I Already Gave My Right Arm To Be Ambidextrous!

In The Mirror...About to Break...Worthy...Not This Disease...I Am Dance!

2012-01-23T01:53:00.001-05:00

This satisfies the MOWer's blog topic: self-esteem!

When I first began belly dance class, it was at night in the neighboring apartment complex. I had never attempted it before. I had my shoulder replaced in March 2010 and began belly dancing in August of that year. It was difficult for me at the time. I can't lie. I had already finished my physical therapy but still did not have full range of motion in my right shoulder. I didn't have a lot of flexibility everywhere else~back, neck, hips, and legs. I also didn't have a lot of self-esteem. If I was going to go back to dancing, I was going to have to be that same person that held nothing back and just let loose. If I couldn't be that person, then I was going to have a hard time dancing. I also knew if I couldn't allow myself to dance again, that would be like a death sentence.

I only went to the apartment complex belly dance class 4 times. Then I thought it just wasn't for me. I felt self-conscious and as if I just couldn't keep up. I thought for sure everyone was watching me and wondering what was wrong with me. I just knew that I stuck out as someone that couldn't dance because there was "something wrong" with me. I felt every one's eyes looking me over, up and down, and through me. I couldn't go back...I failed!

A couple months later, a bunch of people went out for my birthday. One person that works with my hubby, who happens to be a long-time belly dancer, gave me a gift certificate for class with the same dance instructor that was at the apartment complex but at a dance studio. I thought I should give it another try...

Meanwhile, we adopted our son Michael. We brought him home, and we got settled. Then I returned to belly dancing once more to give it another try. I felt better about it this time for some reason. I was stronger. My right shoulder's range of motion was back to normal, and I was feeling pretty good physically. I began in February of 2011 when Mick was only 2 months old. I started in the Saturday Beginner Class. At first, it was a little hard, but not as hard as it once was when I was going at night to the apartment complex classes. I felt like maybe I could catch on faster now that I was physically feeling better. By the end of that first class, I had a confidence that I had not had in soooooooo long! I really needed that class! I had my friend Ang come visit from out of town, and she joined us for one class to learn the very end to our dance. She caught on extremely quickly, and she did an awesome job especially considering that she had never taken a belly dance class ever. At the end of that class, I took one more Saturday Beginner Class, and then was moved up to the Intermediate-Advanced Class!

I couldn't believe it! By the time I left for my brother's wedding in April, 2011, I had already completed my first Intermediate-Advanced Class! I had no problems keeping up either, which made it so much more enjoyable and worthwhile. I began taking both the Beginner and Intermediate-Advanced Classes together so that I could take more than one class at the same time. I fell in love with belly dance!!!!

Just last weekend (January 15th), our belly dance studio had a performance. We were asked to get together with other people in our class in November to perform a dance or by our self to perform a solo dance in the show. I was asked by 5 different people to do a dance with them. Talk about a boost in your self-esteem! You know that when others ask you to dance with them, they appreciate your talent or else they would not ask you to dance with them. I was honored and excited to begin practicing. Of course, I was going to be out of town for a lot of the holiday season which meant that I would miss a lot of practice time, so I opted out of the January performance. I told everyone that I would love to dance with them in the spring performance in March or May.

The holiday season has come and gone so quickly. We returned from visiting family in St. Louis, and were ready to get back into our normal routine again. I had made an appointment with my hip orthopaedic surgeon way back in November to see him on January 4th. I had been having some problems with the right hip~clicking, sticking, popping, pain, grinding, and I feared that it was near total collapse. My fears were actually made true when I was told that the right hip could collapse totally any moment now. I am continuing to belly dance though until I can no longer do it physically. I went to the performance eleven days after my news from my orthopaedic surgeon. I cheered on my fellow classmates.

Two days later, I went to my belly cardio class, which is fast paced and super-charged fun! I danced my body and my heart out as if nothing was wrong with me physically. I told no one in my class about my hip. I just wanted to be "normal," to feel "normal," and to only have people look at me for how I danced because they liked my dancing! OH, I danced as though my life depended on it! I held my head up high and my shoulders back! I was so proud of myself! No one can make you have self-esteem, it is

The music began...I watched myself dancing in the mirror next to all the other women and young ladies in my class...I couldn't even tell...I don't think anyone could tell...I truly couldn't tell...I moved my hips, then my shoulders, and I could keep up with everyone in the class~old and young alike...No one even knew I was about to break...No one knew I was less than perfect...it looked as if I was afraid of no one or nothing...I gave the impression that I had so much spirit, brevity, courage, spunk...I obviously feel comfortable in my own skin...I know what I'm doing...This is so right!...I am worthy!...I am a dancer!...I am dance!...I am not this disease...it doesn't define me!...I am worth so much more!...

You don't wake up one morning and say, 'I will become a dancer.'

You wake up one morning and realize you've been a dancer all your life,

And you say to yourself, 'I am a dancer.'

'I am dance.'

I Have The Best Friends Anyone Could Ask For...I Don't NEED Anything More!

2012-01-20T14:15:00.000-05:00

This blog post will fulfill the the MOWer's blog carnival topic "NEED." When I think about the word "need", I automatically think about the word "want" as well. Many people tend to interchange these two words as if they have the same meaning, and in fact, these two words are very different in meaning. The word "want" is defined as:

1. desire something: to feel a need or desire for something
"We want a new car."
2. wish something done: to desire to do something or that something be done
"He wants his steak well done."
3. miss something: to feel the lack of something
"After a week on the road, I want my own bed."
4. wish somebody to be present: to wish to see or speak to somebody
"Someone wants you at the door."
5. seek somebody as crime suspect: to seek somebody in connection with a crime ( usually passive )
"wanted for two felonies"
6. desire somebody sexually: to feel sexual desire for somebody ( informal )

So when you "want" something, you could replace the word "want" with any number of these words/phrases: desire, wish for, would like, feel like, crave, covet, yearn for, hanker after, be after, be looking for, hope for, aspire or fancy.

When you "need" someone or something, the definition changes:

1. transitive and intransitive verb require something: require something in order to have success or achieve a goal
"Do you need any money?"
2. be necessary: used to indicate that a course of action is desirable or necessary ( used in negative statements )
"You don't need to thank me; I'm happy to help whenever I can."
3. transitive and intransitive verb deserve something: to deserve something, especially as punishment ( informal )
"Those troops need to be shown who's boss."
4. intransitive verb to be essential: to be essential or necessary to something ( archaic )

Therefore when you "need" someone or something you can replace the word "need" with: demand, require, call for, necessitate, take, have to, must, should or ought.

When I think of wants and needs, I think of a desire (want) to fill what's lacking or absent vs. something essential or necessary either to survival or something more basic, such as a requirement (need) to complete a recipe.

So why am I going to such extremes to show you the difference between wants and NEEDS? Well I think it's important for everyone to know that food, air, water, love and shelter are needs and that candy, ice cream, shoes to match every outfit, and a designer purse are all WANTS.

In my life, just like in every one's life, I have a WANT list. Many people make the list around the holiday season for loved ones to know what to buy for them. I make my WANT list more so to realize that material things are nice to hope and wish for, but they are definitely not the most important things in this world. I put things on my WANT list like outfits for belly dance, velour jogging suits, I-PAD, smart phone, new shoes, hair accessories, new furniture, new TV, etc.

Now to take this in a little different direction...I went to my hip orthopaedic surgeon on Jan. 4th because I was having increased hip and groin pain. My right hip was sticking more when I went from the seated position to the standing position. I was extremely concerned because 8 1/2 years ago, this is what it felt like right before my left hip completely collapsed. It collapsed in August 2003 and was replaced December 22, 2003. I began to prepare myself for what the doctor was going to say, all the while hoping that he would end up telling me that it was still the same as it was in May of 2011. Well, my fears were correct. It is just about to collapse. The hip is a ball-in-socket joint so the hip is able to move in a full circle inside the socket. For me, the socket is resting on the ball, which is already flattened (not round), and the ball has a crack all the way through it. Imagine what the pressure is like on that ball! With all that pressure and a crack all the way through, it does not take a genius to figure out that it could collapse at any moment!

When I found this out, I didn't freak out at all. I had prepared myself for this, and we knew this was going to happen sooner or later. I was prepared to an extent, but you just can't prepare yourself for that specific day to be told that you NEED to have your hip replaced as soon as possible. I WANTED it to be when my son Michael was old enough to feed, dress, and bathe himself, but perhaps that is asking too much. Ideally, we would be in a city with lots of family and all my friends to be able to jump in to help us out, but again, that just isn't in our cards. It would be super if after this hip replacement, I would not NEED anymore joint replacements. Sadly, I am still playing the waiting game with my left shoulder and both of my knees, not to mention that joint replacements do not last forever. They are also replaceable. My left hip is now 8 YEARS OLD! I was told it would only last about 10 years. OMG! I do not WANT to have a hip replacement done two years apart, even if they are on two different legs.

I WANT the surgery to go smoothly without complications~no problems with infection, placement, blood pressure, etc. I WANT to heal quickly. I WANT to be able to have physical therapy that restores my physical activity and range of motion to normal level. I WANT to heal in three months so that we won't have to hire someone to come into our home after my hubby goes back to work for the fall semester. I WANT this new hip to make both legs equal in size. I WANT to get rid of the pain. I WANT to be able to return to belly dancing relatively quickly after the hip replacement~told you I was a type A personality! I don't WANT to have to start all over again with walking, going up steps, driving, swimming, lifting my leg, bending my knee, sitting, standing, riding a stationary bike, then slowly lifting things, then going back to a normal day of cooking, cleaning, taking care of a baby (diapers, bathing, feeding, playing on the floor, chasing, carrying, etc.).

I NEED help with my son who is now 13 months old. This is what is giving me the most anxiety, however, we have it all planned and everything is in the works. I go in for surgery on May 10th, and my mother-in-law arrives here in town on May 8th. She is off work all the time on Tuesdays, Wednesdays and Thursdays so to come in town she will take her vacation days in chunks. She will start her days off May 11th through the 14th, then the 18th through the 21st, then the 25th through the 28th, and so on...She will be here for the majority of May and most importantly on my surgery day and while I'm in the hospital so my hubby can be with me in the hospital while she's with Michael. I will still NEED help in June, July and August. In June, my parents will figure out their schedules to come here. I have lined up others to come in the other months. In August, we will fly to St. Louis so my hubby can go to Memphis for a bachelor party. This way, I will have lots of family and friends to still help toward the end of my recovery. I have put Mick on a wait list for full time daycare for the summer months. If we struggle at all, we will hire a nanny to help with Mick's care. After May, I should be doing most of my own care myself except driving and bathing. I will still be unable to lift 10 pounds, so no lifting up Mick! That will be the challenge.

Anytime you have an illness or surgery that prevents you from taking care of yourself and others like you normally do, you are forced to rely on others. Although I have been through a hip replacement surgery before and a shoulder replacement as well (as a matter of fact, I have had 9 surgeries in all plus this one now). We have been away from family and old friends for 7 of these surgeries and have done OK by ourselves so far. The thing is that we have never had a child until now. So now we especially NEED the help of others for the sake of our son! Well, we have not had to even ask a single person for help.

I find it interesting, and mentioned this in my blogtalkradio show, that when you have really wonderful, true friends who know that you are in NEED of help, they tend to pass the word on to everyone they know that you are in NEED whether they know you or of you or not. They tell their friends, their friends' friends, their brothers, sisters, moms, dads, uncles, cousins, church members, members of their book club, people that serve them coffee, etc. Then all of a sudden, you are getting dinners from people that you think are coming out from under the rugs. Well, they actually aren't coming out from under the rugs. These people are coming to help you, because of people that love you very much. They know you are in NEED because of these beautiful, loving people.

I must have the best friends anyone could ask for! I have had so many friends and people I hardly know or have never met until now offer to help us out during the surgery and after the surgery and even now since I am having difficulty with my range of motion and getting around. Thank you, Angela and Rob, Kelbi and Sam, Susan, Samantha, Samantha and Troy, Debbie, Sarah, Rachana, Grace...and family~Mary Lynn, Mom, Dad, Ricky, Beth, Debbie...and my online friends as well who cannot help in person but in spirit and with support~Cookie, Brenna, Wendy...oh gosh there are so many of you, I could go on and on...if your name isn't on here it is written on my heart! You must know that with friends like you all I don't NEED anything more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I truly love you all! Isn't it wonderful to know you are NEEDED? Guess what? You are also WANTED! I chose you all as my friends, so you all are NEEDED and WANTED, both such great honors!

How to Make 2012 a Happy Year!

2011-12-30T23:00:00.002-05:00

The next edition of ChronicBabe's blog carnival goes LIVE on Monday, January 2, 2012 and it's all about new year's resolutions. What's your plan for the coming year? Is there something you've committed to doing, and do you have an accountability buddy? What's going to change? What's going to be freakin' awesome? Tell us! Not only do we want to know, but also...you'll help inspire others.

To make my 2012 a happy year, I am making a very important resolution for myself. I am going to make sure to exercise regularly. Now I know that is probably the most common resolution, right up there with weight loss every year. For me it's different though. Before we adopted our son, Michael, a year ago in December, I was going to an aqua aerobics class three times a week, walking, and began a NIA class. I was feeling great! Then when we brought home a new baby, things changed! I began to slack on the exercising, put on weight, began to feel worse again, and because of my feeling worse it made it even harder for me to exercise regularly. It was a circle of disaster!!!!

Basically, for me, I need to exercise to keep my joints loose, my muscles warm and to keep my weight down. It gives me some energy, not a lot, but more than the usual amount. My fatigue is really bad and on top of the pain can really bring me down. It can really make me not want to do anything but lie on the couch all day, all week, well forever actually.

I found something that worked for me, and exercise is the key to keeping me active. No, I will never be in the Olympics or dance competitively or anything like that, but I am happier and healthier because of the exercise. I have gotten back into the exercise slowly in the past year so my resolution for 2012 is to keep it up and continue to add new things to keep it fun.

A Little About Belly dance...
A beautiful and distinct ancient dance form, belly dance or raks (raqs) sharki (also called danse orientale), has a deep history dating back thousands of years in the Middle East. It is a dance of celebration and is done by women of all shapes and sizes. It is a dance of beauty and feminitity and embraces and celebrates the true beauty of the woman.

Although most often characterized by sharp, sensual and isolated movements of the torso and hips, belly dance is performed using every body muscle- including those in the arms and hands.

Not only is belly dance fun to watch and to learn, but it has many health benefits as well. It has a healing quality (physical and emotional), improves muscle tone and flexibility, promotes healthy weight loss, improves balance and coordination, builds stamina and strength, helps to maintain a healthy metabolism and can help to condition the body for childbirth.

One of the biggest myths is that belly dance is a dance of seduction performed to and for male audiences. In fact, bellydance tradition handed down through generations of women states that belly dance originated as a dance to celebrate and promote fertility and healthy childbirths. It was a dance to celebrate mother earth to many. It is thought that belly dance aides women in preparing their abdominal muscles for labor and even today, in places accross the Middle East and in North Africa, many of these movements are used in birthing rituals. In countries across the globe, many couples hire belly dancers to perform at their weddings as it is thought to bless the couple with a future of fertility and healthy babies/children.

Moreover, in the harem sub-culture, it is noted that women would enetertain each other by belly dancing for one another. Contrary to what many believe, the women in the harems would rarerly even see the king or sultan.

I began taking belly dance classes off and on about a year ago. I started in the beginner class and am now in the advanced class. I take the advanced class on the weekend and I still take a beginner class during the week. I really enjoy it. I am hoping to perform a dance number in our spring concert. Wow! Now that's big news!

The beginner class is currently having a cardio belly class which is fast paced and makes you sweat! It is great for weight loss. I really enjoy belly dancing because it is easy on the joints, has wonderful movement for my muscles and joints (especially my back and neck), and my body knows if I miss a class. I actually hurt more if I don't dance! That is fantastic news. It makes me want to go back for more. There is no jumping or anything that is hard on my joints~I mean I have 2 joint replacements already and will be needing 4 more in the near future.

If you have read my blog before too you know that I was a professional ballet dancer. I really have a passion for dance. The belly dancing has given me back this passion for dance. I am able to do something I really enjoy, that is good for me physically and mentally as well as emotionally. It makes me a happier person. I am easier to be around! Just ask my hubby!

So for the year 2012, I want to make it a happy year. To be happy, I want to be dancing! And by dancing, I am exercising, I am keeping my weight in check and my pain and physical body as well as my mental and emotional body in check. As long as I keep it up, I will not have to worry about falling back into a rut and having to work my way back into an exercise regimen. So I hope to continue, and stay happy in 2012!!!!! Happy New Year to you all!

Symptoms

2011-12-29T05:35:00.004-05:00

This is my next entry to post for the MOWer's blog. The subject is Symptoms. Wow! What a topic!

If you get symptoms of a cold, you see your internist, primary or family doctor. Symptoms of a cold are pretty simple and well-known: stuffy, runny nose, scratchy throat, post-nasal drip, etc. It's interesting, but if you tell someone you have a cold, they know what symptoms you have already, and there are the traditional treatments as well. You can take a decongestant, drink tea with honey and lemon, take Tylenol if you run a fever or if you have a sore throat even. For all of us with spondyloarthropathies, symptoms can be as different from each other as night and day, as hard to notice from one person to the next, and often stump doctors, even those that specialize in our rare problems~the rheumatologists.

I have been dealing with what I thought at some points in time were unrelated symptoms, then at other times began to swear up and down that everything I have been through in all my years have been related to the spondyloarthropathies that I (will) have been diagnosed with finally! The most difficult issue with all of this is that when you go to the doctor with 1 or 2 symptoms at a time, the frustration will blow your mind. It isn't cut and dry. There is no certainty that your doctor will give you a diagnosis or even treat you for that matter. Meanwhile, you are trapped in a world of pain, weakness, disability, loss of your old self, and a feeling that you could even be losing your mind! One thing is for sure, no matter what symptoms you end up with if you are lucky enough to have one or more spondyloarthropathy, the physical symptoms will be there, and they might be similar to those you meet in the same situation, but you may also notice that they all end up questioning their mental state! Yes, it's true!

When you have certain physical symptoms and no lab tests or x-rays or similar tests to back them up, doctors begin to question automatically if you really have these physical symptoms or if they are manifestations of something else going on~depression, anxiety, a psychiatric condition, or perhaps you appear to have drug-seeking behaviors because you are showing no real signs of pain but wanting something for pain! Well, with all of this, it is only natural to begin questioning yourself, "Am I really feeling these symptoms? Is my neck really this stiff? Is my lower back hurting so bad, I cannot sleep at night? Are the bottoms of my feet so painful that if feels like I am walking on hot coals? Are my joints really so stiff and sore that I can't move them for 2 hours after I awaken in the morning?" When we can't really answer yes or no definitively, it gets pretty scary for us!!!

The symptoms are real, don't get me wrong, and I am in no way trying to make them seem unreal or to make light of spondyloarthropathies or their symptoms. After all, I am a person with spondyloarthropothies, and I know how real they are and that the symptoms are definitely REAL!! So now let me just talk to you a little bit about what I had to go through to finally get someone, anyone, to listen to me about my symptoms. Spondyloarthropathies tend to attack the body’s major joints, primarily were ligaments attach to bone. Like myself, many who suffer from a spondyloarthropathy condition are likely to experience pain and reduced mobility in the ankles, knees, hips and lower back that is much more significant in the morning or when waking. These symptoms may become less severe as the day progresses and have often been much less severe following exercise. Patients, like myself, suffering from spondyloarthropathy may also experience pain or stiffness in the shoulders and wrists that follows the same progressive improvement in severity as the other joint pain. Patients may also experience pleuritic chest pain which is characterized by pain in the chest area that may or may not be accompanied with breathing difficulty. It also can be due to costochondritis, which I have often and is very, very painful!!! This symptom alone is not enough to diagnose a spondyloarthropathy as this form of chest pain is also a common symptom of pneumonia, viral illness, a pulmonary embolism, heart attack, lung cancer or a pleural tumor. For that reason, any chest pain should be considered serious and warrants a doctor’s immediate attention for further testing to rule out anything that is critical and must be addressed immediately.

Weight loss, fever and fatigue are also common symptoms that present with all of the spondyloarthropathy conditions. I would say that for me, in the earlier stages, weight loss was severe. Then I began to gain weight as the disease progressed. Fever and fatigue has been around for as long as I can remember. I have daily fevers, low-grade, in the late afternoon and during the night. Fatigue continues to be a problem for me. Although medications have helped, I still continue to get exhausted and tire easily. I have very little energy, and I also do not sleep well which only makes the problem worse. Some spondyloarthropathies may also cause what is commonly known as sausage digit--a swelling of the fingers or toes. I had the sausage digits on a couple of my toes, which finally went away after starting on a biologic--Remicade. Some patients will also suffer from a heart murmur that will need to be monitored by a doctor as well. I have a history of a heart murmur that comes and goes.

Rheumatoid arthritis is likely the medical condition most commonly confused with spondyloarthropathy but is generally able to be ruled out by tests that reveal the rheumatoid factor is not present in the patient’s blood. Of course, this is not always the case because even those people with RA do not always test positive for the rheumatoid factor. Also, since it is quite possible that spondyloarthropathies run in families, a patient’s family history is also a good indicator of whether or not their condition is a spondyloarthropathy or rheumatoid arthritis. Again, this is not always true either because many of us have no one in our families with a spondyloarthropathy. We do not know, however, if this is the case because there truly is no one in our family history with a spondyloarthropathy or if there is a family history, and perhaps no one ever did anything about it~diagnosis, treatment, etc.

Initially, a patient suffering from spondyloarthropathy will experience pain or stiffness in the lower back; especially in the morning. That pain or stiffness will often gradually feel better throughout the day or following a period of exercise. Fatigue is also a common indicator that someone is suffering from this condition. They may feel worn out more quickly than previously or may feel tired much more often. In time the pain and stiffness in the lower back will spread further into the lower back and the buttocks. Treatment will likely not eliminate the symptoms entirely but should allow relief and prevent the condition from progressing further as quickly. Nothing has been proven to stop the progression of the condition entirely, but treatment will at least slow down the process. For many women, the first symptom is pain and stiffness in the neck, before the lower back, which does not mean that the lower back isn't experiencing any problems. Many times, by the time, they feel symptoms in the lower back, the damage is already severe.

Because a major component of the eye is collagen just like the ligaments, tendons and tissue within joint spaces, it is reasonable to think that the eye would also be affected by the symptoms of spondylitis just like the joints. Thirty percent of people with spondylitis have had or will develop a potentially serious inflammation of the eye called iritis. (Acute anterior uveitis and iridocyclitis are additional medical terms to describe iritis.) I have had iritis/uveitis four times. Three of the four times I knew what to look for, but the first time, I didn't even know that the inflammation was occurring. I was at my ophthalmologist for my yearly check up when it was found. This condition can cause blindness if not treated properly, so it is essential for you to recognize its signs and symptoms , and understand the important role you play in your eye health care. Symptoms often occur in one eye at a time, and they may include redness, pain, sensitivity to light, and skewed vision. By using a slit-lamp microscope, an ophthalmologist or specially trained optometrist can distinguish iritis from other causes of eye redness (such as from an allergy, trauma, or viral infection).[http://www.spondylitis.org/members/03.aspx?PgSrch=symptoms]

In a minority of individuals, the pain does not start in the lower back, but in a peripheral joint such as the hip, ankle, elbow, knee, heel or shoulder. This pain is commonly caused by enthesitis, which is the inflammation of the site where a ligament or tendon attaches to bone. Inflammation and pain in peripheral joints is more common in juveniles with ankylosing spondylitis (AS). This can be confusing since, without the immediate presence of back pain, AS may look like some other form of arthritis. Many people with AS also experience bowel inflammation, which may be associated with Crohn's Disease or ulcerative colitis. Advanced symptoms can be chronic, severe pain and stiffness in the back, spine and possibly peripheral joints, as well as lack of spinal mobility because of chronic inflammation and possible spinal fusion. [http://www.spondylitis.org/about/as_sym.aspx]

I have had symptoms of inflammatory back/pelvis pain, unilateral or alternating buttock pain, enethesitis--inflammation where a tendon or ligament attaches to the bone, peripheral arthritis, arthritis of the small joints, heel pain, fatigue, the scaly patches on the skin caused by psoriasis, skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, pain and swelling in the fingers or toes, sometimes the swelling causing a "sausage" appearance, small indentations, lifting and /or discoloration of the fingernails or toenails, fingernails and toenails which may become thickened and crumble as if infected by fungus, pain and swelling in the joints, pain and stiffness of the spine, especially after prolonged inactivity, fever and chills, cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating, mouth ulcers, inflammatory eye conditions of the eye such as iritis/uveitis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. I was told that I have sacroiliac joint involvement. I was also told several years ago that where the spine meets the pelvis looks like it was crushed in an automobile accident when I had an MRI done. I never had my pelvis/SI joints crushed in an auto accident.

There are several types of spondyloarthropathies, and a big difference is age of onset and which sex it affects more. General onset of AS commonly occurs in younger people, between the ages of 17-45. However, it can affect children and those who are much older. AS is more common in men, but occurs in women as well. Most individuals who have AS also have a gene that produces a "genetic marker"-- in this case, a protein-- called HLA-B27. This marker is found in over 95% of people in the Caucasian population with AS (the association between ankylosing spondylitis and HLA-B27 varies greatly between ethnic and racial groups. It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis. Undifferentiated spondyloarthritis has an onset of the disease which is insidious and, even years of disease inflammation or calcification of the sacroiliac joints (the joints where the spine meets the pelvis) is often absent or mild on routine x-rays. According to some experts, the age of onset is very wide and tends to peak at age 50. Unlike AS, USpA is more common in females and only 20-25% of people with USpA are HLA-B27 positive. Some people with undifferentiated spondyloarthropathy later develop symptoms of the other forms of spondylitis, such as AS, but many will continue to have chronic, but not severe symptoms, and remain "undifferentiated." [http://www.spondylitis.org/about/undif.aspx]

In juvenile spondyloarthritis, sometimes the symptoms are episodic and unpredictable, seeming to come and go without an obvious cause over a long period of time. This cycle of disease flare up followed by remission may be repeated many times. It is important to note that the disease progression and the severity of symptoms vary in each person. Some children may experience a mild, short-term disease, whereas others experience a severe, long-term and disabling condition. The more common symptoms of juvenile spondyloarthritis include arthritic pain, especially around the heels or toes, around the knee and in the lower back. Frequently, the first symptom is pain at the site where ligaments and tendons attach to the bone (the inflammation at this location is called enthesitis). Months or years later, other joints may be affected, particularly joints of the spine or sacroiliac (SI) joints - the joints at the base of the spine, where the spine meets the pelvis. At the beginning of the disease, children often have inflamed, swollen joints like the knees and ankles, but in adults, the spine is more likely to be involved. This inflammation can cause permanent damage if left untreated. Sometimes children with spondyloarthritis develop other symptoms as well. These include fever, psoriasis (a chronic skin rash), other rashes, colitis or Crohn's disease (inflammation of the intestines), and iritis (inflammation involving the eye). Rare complications may affect the heart, kidneys, or spinal cord. It is also important to know the exact cause is unknown, but genetics do play a key role. Much like in adult-onset spondyloarthropathies, the genetic marker, HLA-B27 is often found in those with JSpa. [http://www.spondylitis.org/about/juvenile.aspx]

About 20% of people who develop Psoriatic Arthritis will eventually have spinal involvement, which is called psoriatic spondylitis. The inflammation in the spine can lead to complete fusion - as in ankylosing spondylitis - or skip areas where, for example, only the lower back and neck are involved. Those with spinal involvement are most likely to test positive for the HLA-B27 genetic marker. The symptoms of psoriasis include scaly red patches appearing anywhere on the body, but often on the scalp, elbows, knees and lower end of the backbone. In psoriatic arthritis, the skin condition is accompanied by arthritis symptoms: the scaly patches on the skin caused by psoriasis; pain and swelling in the fingers or toes, sometimes the swelling causing a "sausage" appearance; small indentations, lifting and /or discoloration of the fingernails or toenails; pain and swelling in the joints; pain and stiffness of the spine, especially after prolonged inactivity; inflammatory eye conditions of the eye such as iritis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. [http://www.spondylitis.org/about/psoriatic.aspx]

Reactive Arthritis usually develops 2-4 weeks after the infection. A tendency exists for more severe and long-term disease in patients who do test positive for HLA-B27 as well as those who have a family history of the disease. Symptoms include: pain, swelling and stiffness in the joints including the knees, ankles and feet; skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, or a red scaling rash on the penis; involved fingers and toes that often swell, causing the so-called "sausage digits;" fingernails and toenails which may become thickened and crumble as if infected by fungus; fever and chills; inflammation of the eye (conjunctivitis, uveitis or iritis) that can cause redness, pain, sensitivity to light and skewed vision; enthesopathy - inflammation where the tendon attaches to the bone; inflammation and pain in the lower back or pelvic area; cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating; genital sores appearing on the shaft of the penis or scrotum, or in women, on the external areas of the genitals. These are usually blisters that break open and crust over. Although they heal without scarring, these blisters can be a source of great anxiety in those with ReA. [http://www.spondylitis.org/about/reactive.aspx]

Ankylosing spondylitis and related diseases tend to run in families, so there is a genetic factor involved as well. Those who test positive for the HLA-B27 genetic marker are much more likely to have spinal involvement with enteropathic arthritis than those who test negative. Ulcerative colitis and Crohn's disease are the two types of IBD most commonly associated with enteropathic arthritis in spondylitis. Abdominal pain and bloody diarrhea are the most common symptoms of IBD. Arthritis symptoms may precede the IBD symptoms. About one in five people with enteropathic arthritis will have inflammatory arthritis in one or more peripheral (limb) joints such as an arm or leg, although the lower limbs are more commonly affected. The severity of the peripheral arthritis normally coincides with the severity of the IBD, thus when diarrhea and abdominal pain are flaring, the peripheral arthritis tends to flare as well. About one in six people with IBD also has spinal inflammation, although this inflammation is independent of the severity of the bowel disease symptoms. In many, this may just be arthritis in the sacroiliac (SI) joints, but in about five percent of people, the entire spine is involved, as it is in AS.[http://www.spondylitis.org/about/ibd.aspx]

When I was writing this, I kept thinking that I should have a site like Google just for symptoms. It would be like an online search tool for symptoms only, but it wold only be for symptoms~kind of like Web MD's search tool. The part that would be most interesting is that it would come from me since I've actually experienced most of the symptoms myself. It would be like asking me personally~have you had this symptom Dana Morningstar? How did it feel? What did the doctors tell you? What did you do about it? Could you give me some advice? It would be so cool?....Someday in the future I hope...

Social Outings: My Disabled Parking Spot Is a Microcosm of My Life in Regards to Social Outings in How People Look at Me and Treat Me When I Go Out...

2011-10-29T08:45:00.001-04:00

My heart races, my palms sweat, and I worry about how long I will last. Will I feel well enough to make it through a full dinner, sitting in a chair at a table in a restaurant? Will there be a place to sit at the party we are attending? What is the parking like? Do we park on the street; will it be a close enough spot so I won't have to walk far? Can I wear my awesome new shoes, or will I be stuck standing in the corner praying that we leave soon so I can cut my feet out of my shoes? The history of my family's nationality is Italian (Sicilian), Irish, German, and my very own history is that I was born on Nov. 3rd, making me a Scorpio, born in the year of the Tiger. What does all that mean? Well, I'm normally outgoing, happy, funny, everybody knows me, the life of the party, easy-going, and loud!

I was always the person that loved a party. I enjoyed throwing a party and going to one. I still do, but just not the same as I did years ago. I was even thrilled with the prepping for the party; still am, but it's so different now. I used to decide last minute to have friends over, or I'd jump at the chance to go over to a friend's spur of the moment. First of all, so much planning is involved just in my day-to-day life now that adding any new tasks, activities, etc. involves extensive planning. Besides extra planning, I also have to take into account that I will need to set aside more rest periods and breaks because I will be doing more in the time allotted for my normal activities of the day. I can't add more time to my day. That would be perfect!
Usually with social outings, I want to look good. If we are going out, I want to take some time to fix my hair and make-up and put on an outfit that makes me look confident, strong, will make heads turn, and so people will be talking about me the next day (and not about the fact that I limp, the size of my scar on my right arm, if I look like I'm getting enough sleep, about my weight--up or down--or their opinion about the status of my arthritis and physical condition in general). I want people to talk about me as a person, as Dana, not as my chronic illnesses. I want them to notice how awesome I am and like me for me! That is what I look forward to when we have social outings. That is why I love to go out with my hubby and friends. I forget about being sick for a brief moment. Others see me for me. Problem is that my illnesses are a part of who I am, and they don't go away just because I forget about them for a while. I am not my chronic illnesses; they are not me; but we are partners in a sense.
Certain things that others may take for granted, I have to struggle with daily. I can choose not to wear make-up which is a lot easier for me because it is painful for my hands, fingers and wrists to put on make-up. Normally, I just wash and brush my hair and then let it dry~easy shmeezy! When we are getting ready to go out somewhere, I have to one-up myself. Make-up application can be a painful procedure, but when I have a psoriasis flare, which I have been struggling with for almost 4 months now since June, I have to deal with how to apply my make-up. It is a difficult process, a tedious one, and requires several careful steps. First, I wash my face with a gentle scrub to remove as many skin flakes as possible, and the gentle scrub doesn't irritate the skin. I pat my face dry, and then I apply a moisturizer for eczema/psoriasis prone skin. I let that soak in a bit. Then I apply my psoriasis steroid lotion. It's thin so make-up goes over it pretty easily. I use all Physician's Formula products for my make-up and apply a very thin layer of green pre-treatment to cover the redness. Then I apply a thin layer of light liquid foundation. Then I use a powder that is translucent with yellows and greens in it to again cover any redness that is still visible. Then I use a buff beige or creamy natural colored powder compact. I brush gently over my entire face to remove any excess powder. Then I apply a light bronzer to bring a little life and light back into my skin. Then I add some rose colored blush to my cheeks and eyelids. Then I am done. I still am flaky a bit, and I still have some redness and itchy/painful skin, but the difference is like night and day!

Then there is the hair...I usually am so worn out from doing my make-up, that I don't have much strength left in me to do much to my hair. I have straight hair, but I use a flat iron to flip the ends out or curl them under. I also curl my bangs under with it. I have a long, asymmetrical hair style with bangs. It is pretty simple to style. It looks pretty when I use the flat iron, and as long as I am caught up with coloring my hair (dark auburn), I'm good. If my hair needs to be dyed, I use Clairol's Natural Instincts 30R. Otherwise, if I fall behind, I have gray roots. I just experienced that, and I do NOT want to go there AGAIN!!!! All my roots are so gray now, almost white. They are so coarse and break easily. Some are about an inch long from the root and stick straight up from my part. OMG! They are so noticeable. I used to pull the gray hairs out before a social outing. Now, there are too many to count let alone pull out.

With my horrible psoriasis flare, I couldn't dye my hair because it was on my scalp. I didn't want to put any chemicals on my head with open sores and wounds from the psoriasis rash on my scalp. That would be all I needed~an infection on top of the psoriasis. So I waited and waited for the scalp to clear up. The first day that the scalp was clear of the psoriasis, I tore open a box of Clairol's Natural Instincts, and away I went with the application! Funny bit of info~the only time I wear my contacts is for a really elegant event like a wedding or a gala......AND.....when I dye my hair. Why?...because I can't see but a couple inches in front of my face. I wear glasses all the time. I have contacts for those special events, but I really can't wear contacts because of the Sjogren's. I make next to no tears at all. The tears that I do make do not contain the oily lubricant. They are just salt water. Just thought I would give ya that little bit of info about me. Kinda funny I think. Most people would take their contacts out for fear they might get the dye in their eyes and get it under their contacts. I put my contacts in specifically for the dye-job. Hmmm....hope I didn't just jinx myself. I haven't gotten any in my eyes yet...

So for me, social outings can be fun, but in order for me to enjoy myself, I have to be fully prepared. I have to be fully rested. Not only for the party, but rested enough to prepare for the party to have enough energy for the prep and for the party itself. I also need to remember that prep might include my getting ready, food preparation, cleaning and straightening our home, decorating, and now that I have a baby, getting him dressed and ready for the outing or for the babysitter. Wow, just by putting it all in writing makes me exhausted!

I really wish that my family and friends that see me at these social outings and events could walk in my shoes for a day or a week or a month. ( I really, REALLY wish if they walked in my shoes for a while that during that time, I could borrow their shoes and switch places and be normal for a bit. Phew. That would be such a relief!) Sometimes it is so hard to imagine what it takes for someone who is in chronic pain, who has several chronic illnesses at once to deal with, is disabled and on top of it all has a baby! Now I know I chose to have a baby. Don't write any comments about that little, teeny, tiny part of the sentence. I am just expressing to those that are not chronic babes out there everything we deal with on top of a life as a mommy, which is fairly normal. We do have the right to live a life like those that are fairly normal. I hope you all agree with that!

That is why we will go through hell to cook and clean, and put layer upon layer of pre-treatment and make-up, dye our coarse, gray hair (most likely caused from all the medications and anesthesia). We want to enjoy our lives. We need the social interaction, whether it is with healthy, "normal" people, or with people that are going through similar chronic conditions like us.

I don't always go to social outings with "normal" people. I also go out with my "like" friends. Although I like the social outings that take my mind off being sick and help me feel normal for a moment, I also actually enjoy going out with my "like" friends to be myself in another direction completely. Those are the social outings when I don't have the energy to cover the psoriasis, and have my gray roots that are 2 inches thick. We limp along together, and sometimes get looks from others. These are the social outings that others look at me for me when I DON'T look good. This is when my illness is not so invisible, and for once in a great while I look sick. I have a few "normal" friends that I can show this side of me with when we go to social outings, but with most I prefer to hide as much of the chronic side of me that I can when we are in public shopping, partying, having dinner, celebrating, or whatever we are enjoying together.

Sadly, many people who say they love you no matter what, will be a shoulder for you to cry, will hold your hair while you get sick from your chemo, will have a pajama day with you everyday whereby no one wears any make-up or does their hair; but the moment you are invited to an important social event together, they do not want to be seen with you if you are not going to be able to do something about covering up that skin condition (psoriasis) that looks like the horrible acne you had back in high school. They don't understand why you won't go ahead and cover your grays with the dye. Psoriasis is "just really dry skin on your scalp, right? So how could dye harm it?" They don't want to take the time to understand your illness, so they just make assumptions which are incorrect, and as I was always told about when you assume, you make an ASS out of U and ME! Psoriasis is not acne. When it is on the face, it does resemble it. It can be severe. It can bleed. It can scab and scar. It can look like raw meat and pizza face like the awful names kids called each other in high school with severe acne, but it is not acne. It is not caused from being dirty. Washing your face more will not clear up your skin. These are all things that have happened to me, real things that people have said to me, actual words from "normal" people who are not sick. These are hurtful things. This is why it can be hard sometimes to go to social outings with "normal" people, and why it is a lot easier to go with "like" chronic babes!

This isn't always the case though. I just want to stress that I do enjoy going out with my "normal" friends that treat me like a person, like I mentioned in the beginning of this blog post. That is why I am able to forget for the moment that I'm sick. They treat me like I'm not sick. That is what is so fun about it. I get all dressed up and spiffy, and then my "normal" friends treat me normal! So ya see, it is hard for us chronic babes to live in both worlds. Best case scenario is to be able to bounce in and out of both worlds from the "normal" world back into our "chronic" world. It takes practice, and trial and error. Find what pace works best for you, and how often you can leave your chronic world to go to "normal" social outings. Also, make sure that you are treated equally in the "normal" world. If you aren't, it isn't worth your time and effort. You would be using a lot of energy preparing to go and then actually attending for something that you would be getting nothing but heartache and pain from.

It makes me think of all the times that I park in my disabled parking spot...

So many times I have gotten out of the car, and someone has said to me not to park in a disabled spot because it was for someone that needed it. Each time, the person thought there was nothing wrong with me to cause me to park in a disabled spot. Of course, I have many, many things wrong with me physically, and in fact, have 2 joint replacements, and I am awaiting the collapse of 4 other ones at any moment to then have them replaced. There are some days that are better days (I rarely use the term good days), and on these days, I may still park in a disabled spot (because I am still disabled even if I'm having a better day), but I will most likely have my make-up on, be dressed nicely, and have my hair done and dyed! On bad days, I again will be in the disabled spot, but on those particular days, I will very likely be in sweats or lounge wear, will have no make-up on, and will definitely have my hair in a ponytail with my bangs clipped back. The disabled parking spot is a microcosm of my life in regards to social outings and how people look at me and treat me when I go out.

World Arthritis Day! My numbers 85-18-36!

2011-10-12T00:21:00.004-04:00

I'm kicking off World Arthritis Day with a look back at when I really began having symptoms that made me ask questions and seek advice from my doctor. I began to put things together and wonder if different symptoms and things that I had in my childhood that were showing up again were chronic conditions. I wanted to put a name to the way I was feeling. I knew there was no way I was wearing myself out with just my normal day-to-day activities and a lifestyle of no smoking and no drugs (I'd love to say no drinking, but I was in college at the time and was experimenting with drinking beer at parties and then going to class at 8 a.m. the next morning). So If you asked me when my onset of my autoimmune arthritis symptoms were, I would have to say that when I began college is when my body really started going crazy! I remember that during this time, I had several severe kidney infections. I had a staph infection that somehow decided to land in my outer ear and earlobe. My ear became double its size and filled with fluid. It was like all the poison was waiting to take over my body! I began having severe stomach problems. I always had problems with my skin. The next year, I had mononucleosis and missed an entire semester of school. I never got out of bed. I basically slept through a semester of my Sophomore year.

Then, my Junior year, I was hospitalized for unexplained fever, joint pain, and abdominal pain. Of course they found nothing. Figures.

Although I had been dealing with symptoms and vague chronic pain issues since I was a young child, my general health began to go down hill when I started college. I went to four years of college, and with each year that passed, my health became more challenging. I went to college from 1993 to 1997, and I sadly have to admit that during that time, no doctor was able to pinpoint what was wrong with me. Each doctor just thought there were many small things happening in clusters at the same time, which made it seem a lot worse than what it actually was. I began college when I was turning 18. I was still just a child! I didn't realize the importance of knowing my childhood medical history. It would have helped with a much quicker diagnosis. I wasn't diagnosed with my autoimmune arthritis until later as an adult because I didn't know all the details of my childhood medical history. It turned out that I had Psoriatic Arthritis, which led to a later diagnosis of Psoriatic Spondylitis or Ankylosing Spondylitis. It depends if it is in addition to the PsA or a part of the PsA. I was also diagnosed with Sjogren's and EDS. My diagnoses were not made until between 2002 and 2004. If I had known that I had Psoriasis as a child, that my mother also has Psoriasis as well as my brother, the diagnosis may have been made when I was a young child. Instead, I didn't seek a doctor to give me a diagnosis until the 90's, and it took nearly a decade to diagnose me.

There is a huge debate right now over whether or not being over weight can lead to autoimmune arthritis. No, it can't! It is that simple. There is plenty of information out there people. Read it! Osteoarthritis is different from autoimmune arthritis. Osteo is caused by the overuse or wearing down of the joint/connective tissue. Autoimmune arthritis is when something in the body causes the body to attack itself! It depends on what type of autoimmune arthritis it is to know what part of the body will be damaged.

I get very upset when people talk about moving your joints to keep them in shape or from getting arthritis. Don't be overweight and you will avoid autoimmune arthritis. These are terrible ways to educate the public about autoimmune arthritis. Moving the joints to keep them from being stiff can be helpful even for those with autoimmune arthritis, but it will not prevent autoimmune arthritis from forming. If it is in your body's make-up to have the autoimmune disease, then it will be done. Period. There are some myths floating around out there about weight and autoimmune arthritis. I just want to set the record straight so that all know; being over weight cannot cause you to get autoimmune arthritis!

My numbers: 85-18-36!

Please post your story of your onset of autoimmune arthritis in the comment part of this blog. Stress how you feel about weight and its affect on autoimmune arthritis. Also, post your numbers if you know what they are. And since we are on the subject of our numbers, if you know what I am talking about, please post your numbers as your facebook status, on twitter, and ask others to do the same.

Thank you all so much and enjoy World Arthritis Day!

Here are some links with information you may be interested in:
http://www.ncbi.nlm.nih.gov/pubmed/20812050
http://www.ncbi.nlm.nih.gov/pubmed/7986867
http://rheumatology.oxfordjournals.org/content/50/3/450.abstract

This should be an exciting day for Autoimmune Arthritis…thank you in advance for your participation!

Link to website www.IAAMovement.org .
Link to Facebook page: https://www.facebook.com/InternationalAutoimmuneArthritisMovement .
Twitter: @IAAMovement

Friendships

2011-10-07T00:43:00.000-04:00

For this MOWer's blog carnival, the topic is friendship. I have had a lot of time to think about friends and friendship since I'm behind in writing my blog posts for this particular blog carnival. Thank goodness this group isn't strict on due dates! I would be in trouble if that were the case because I have so much that I would like to share with this group, and I am grateful for these special friends that I have made online for adding my posts after the fact~after doing all that work. One particular friend, Cookie, finds the time to add my posts, corrects my grammar, and carefully reads and re-reads each of my posts over and over again to make sure it looks the way that I wrote it on my blog. She has even typed it out one word at a time if it didn't look JUST the way it looked on my own blog site. She is an amazing woman and friend. I'm so glad I met her. I look forward to "hearing" from her online daily, and worry when I don't. She does the same. That is a true friend! Thanks again, Cookie, for being such a great, dear friend to me. ;D

According to Wikipedia, Friendship is defined as...

...a form of an interpersonal relationship generally considered to be closer than association, although there is a range of degrees of intimacy in both friendships and associations. Friendship and association are often thought of as spanning across the same continuum. The study of friendship is included in the fields of sociology, social psychology, anthropology, philosophy, and zoology. Various academic theories of friendship have been proposed, among which are social exchange theory, equity theory, relational dialectics, and attachment styles.Value that is found in friendships is often the result of a friend demonstrating the following on a consistent basis:
The tendency to desire what is best for the other
Sympathy and empathy
Honesty, perhaps in situations where it may be difficult for others to speak the truth, especially in terms of pointing out the perceived faults of one's counterpart
Mutual understanding and compassion; ability to go to each other for emotional support
Enjoyment of each other's company
Trust in one another
Positive reciprocity — a relationship is based on equal give and take between the two parties.
The ability to be oneself, express one's feelings and make mistakes without fear of judgement.
It is very important to have honesty, trust, sympathy, respect and helpfulness in friendship.

All those fantastic fields that I mentioned above are studying and researching the impact of friendships' influence on our well-being and happiness. We cannot deny that having strong social supports helps us, especially women, feel better. People live longer, healthier lives when they have friends, especially strong, bonding friendships. No one knows if friendships actually lead to better health, if there truly is a correlation, a cause-and-effect relationship. There have been plenty of theories though. One theory is that if you have a good friend that leads a healthy lifestyle, he/she will then encourage you to also lead a healthy lifestyle as well. Another theory is that good friends better enhance your coping skills to deal with illness and health problems. Still another theory is that good friends encourage you to seek out help and to access health care and other health services. And the final theory is that there are actually physiological pathways protective of health that good friends affect. Friendship is believed to protect both physical and mental health. Loneliness and lack of friendships have been shown to be linked with more heart disease, viruses, and cancer as well as higher mortality rates.

Friendship is an interpersonal relationship also found in animals~mainly mammals and birds. Cross-species friendships can develop between a human and a domestic animal~a dog or a cat. Sometimes friendships develop between an animal and another animal of a different species. I can say that I have and have had friendships with my dogs. Max was my very close furry friend and buddy who is no longer with me! Cookie (different from before-mentioned Cookie) is still my furry friend and now my son Michael's best friend! I have neighbors with a cat and a dog where the cat and dog are best of friends as well. Also, many times, we have seen a dog and a horse or another farm animal that the dog has befriended. Friendship crosses over too when a dog nurses another animal's babies to health even when it isn't another dog. Amazing stories come out of things like this too!

I recently blogged about my bestest friends~Ang, Susan, Kelbi, and Carlene. Each one of these people has brought so much to my life, has entered my life at different times,--perfect times actually--and each one of them is as strong of a woman (or Babe) as the next one! I have known Ang since we were 6 years old. Ang is the type of friend that I can have a no-holds barred kind of fun with. She is also the kind of friend I can trust with my deepest darkest secrets. She knows how to bring me out of my lowest points and how to make me laugh until I pee my pants! She supports me when I fear no one else will. I can text her at 3 a.m. She has come to visit me~jumped on a plane at a moment's notice~because I need a friend, because she wants to share my excitement, because I need a shoulder to lean on, or just because she wants to take a trip somewhere fun or go to a concert--in a two bedroom apartment on a sofa bed in the sunroom or on an air mattress in my baby's room to help with and play with him during the day and then watch a scary movie or two with me at night!!! Kelbi, Susan and Carlene all share my pain. I mean they all have a form of arthritis and fibromyalgia. I am able to call or email them any time of the day to talk about anything. It is especially wonderful to have friends who share something like this because they understand exactly what it's like to not be able to get out of bed, to cancel appointments, to feel so fatigued you can't even wash a bowl in the sink or stand to take a shower. They just "get me." It is sad that what brought Carlene and Kelbi to me was the Arthritis Foundation. If it weren't for our disabling conditions and wanting to help other young adults and other people learn to help themselves to deal with the pain and fatigue, we may have never met. If I didn't have arthritis, I wouldn't have been seeing a counselor, and I wouldn't have been introduced to Susan. I have four Bestest Friends: Ang, Kelbi, Susan and Carlene. They each have entered my life at different times, in different ways, for different reasons~all staying to support me, love me, care for me, understand me, and always be there for me!!! Thank you so much. What would I ever do, where would I ever be, and how could I ever go on without you all? Please read more about them in my previous, more detailed blog about all four of these fantabulous friends in "My Bestest Friends!"

Also, please read more about my hubby; he is my lover~true~but we started out as friends. When we were married 11 years ago, we shared this quote with everyone, and it really summed everything up for us:

This day I marry my friend;
The one I laugh with,
Live for,
Dream with,
And Love!

Eleven years married~seventeen together~we still laugh together, live for one another, share our dreams, and love one another more and more each day. We are true friends with a romantic love for one another. To learn more about my significant other and how much he means to me, please read my poem to him, "Significant Other~Will Never Your Eyes, Soul, Heart Forget!!!!"

I began blogging to help myself. I thought of it more like journaling, the difference was that others had access to it. I didn't even think anyone would read it~ever! I didn't think anyone would be interested in my pathetic, boring life. I also started blogging before I did anything else online. I had an email address, and that was all. My grade school was searching and searching for me for our 20 year Grade School Reunion from 8th grade. Most didn't know that I moved to Georgia from Missouri (with a couple stops along the way in fact). Most didn't even know I was married. Almost no one knew I was in chronic pain, had chronic fatigue, was sick all the time, and had already had one joint replacement at that time, and was well on my way toward more. I basically thought no one would understand, no one would want to be burdened by me, and I would just end up being a bother to everyone. My life seemed to stand still, although we had moved several times. I had gone to a university and gotten my BS in Nursing. I had worked as an RN for a short while, and my hubby had also worked after getting his Ph.D. He was on his 2nd tenure-tracked position. We still had no children, and we had been trying to adopt in every state we lived~no luck!

Somehow I found out that people were searching for me through Classmates.com. I found out that people wanted me to go on Facebook so they could find me easier. They thought I fell off the planet! Ang, that I mentioned before, was looking for me for a few years. Her parents passed away, and she was looking to re-unite with old friends that she shared a special friendship with when she was younger. I got the search on Classmates.com. I contacted her, well when I figured out how to do instant messaging! I can't tell you how excited I was to be chatting with her online! I didn't even know what I was doing. I thought it was like the Jetsons at the time. I couldn't believe it! She told me to get on Facebook as well, so I did. Before I knew it, I had become a new person. I loved it online! I was "friends" with all these people I knew from grade school, high school, and college. Then I started adding family to my "friends" list. I then started blogging more. I added my Facebook badge to my blog. Then others started asking to be my "friend" on Facebook. These people were actually reading my blog, commenting, liking what they read, and wanting to be my Facebook "friend." I then was being invited to join other social networks online for people with chronic pain~ChronicBabe, My Invisible Disabilities Network, Patients Like Me, etc. Then as my blog got more followers and more people knew who I was, I was introduced to this new exciting thing~blog carnivals!!! I began writing blog posts for different blog carnivals, and then I started joining people's group pages on Facebook for their blogs as well as other Facebook pages related to chronic pain to which these other Facebook pages led me. I really started racking in the new Facebook friends online. I was up to over 1100 friends! It started getting crazy actually because I felt like I didn't really "know" the people with whom I was friends. I decided to divide my personal Facebook into two separate profiles, one for family and friends that I actually knew and met and one for online friendships. This happened when we adopted our son Mick. It worked out well because I didn't really want to post pics of him online for people to see that I didn't really know anyway. Now that it has been a while, I have added to my family and friends profile online friends with whom I have built a relationship and trust. I like this so much better because I spend so much time on my family and friends Facebook profile but not very much time with my online friends profile. Some people are on both of course because they started on one and wanted to be added to the other. If you started on the family and friends and were added to the other, it was probably your choice. If you did the opposite, then I probably felt like I got to know you enough and trust you to add you to my family and friends profile. I am so happy to have you all on whatever Facebook profile you are. I care about all of you, whether I know you well enough to really love you as a true friend or care about you by association because of a common cause or interest, etc. So thank you all for that!

I find it so amazing how the internet works now. I met people on social networks other than Facebook, on Facebook itself, through my blog, through other blogs, and in groups on Facebook. I have recently looked back at old conversations and comments with people that I have met online. I have had their support and have been supporting those same people from the beginning! Our friendships are long-lived and strong. We have fought the same battle. We have lived lives so similar, so challenging, and with so many struggles. We think about people with whom we see and talk in our everyday lives that mean so much to us, and of course those friendships are special. But, I can't believe how much my friendships have meant and still mean to me that I have made online. The nice thing about my online friends is that they are always there! I turn on my computer, and your smiling faces are all right there staring at me. I can't tell you what that means to me. Well, I guess you all know, because you see it too! It is a wonderful feeling to be able to find someone at any time of day anywhere in the world at your reach. I never thought I could have friends from Ireland, England, Germany, Canada and even within my own country in other states~Texas, New York, etc.~who all seem to live together inside my laptop. Thank you all for always being there.

There are so many people out there who don't "get it." My online friends are very important to me. Many of them are true friendships that mean as much to me as do my friendships with people that I can touch, see and go to lunch with~some even mean more to me depending on who we are talking about. There are a few groups of online friends that are going through such similar things as me healthwise or know someone going through the same thing that I am going through that they can sympathize or empathize with me. I can think of a few online individuals who I know for a fact desire what is best for me because they have told me over and over again how to take care of myself because they want to see me as well as can be. I can also even pinpoint a select few who are so honest with me that they would outright tell me to stop doing something because it's not a good idea and do something different for myself immediately because they care about me as friends. There is a mutual understanding and compassion there, and I will always be there for them just as they are always my emotional support. I am able to be myself. I don't have to act like someone else in their presence. I am never judged, and I do not ever judge them. We trust each other and enjoy each other's company. And like I stated before, all of this is important to have a true friendship~honesty, trust, sympathy, respect, as well as helpfulness.

Now it doesn't mean that I am ditching my friends in "real-life" to be with my online friends all the time. And I never said that I like the friendships in "real-life" more than my online friends either. They are just different types of friendships. The relationships are all together different, but I am still the same person. I don't have to change, and that is super-important. All of you get to know that I like to joke even when I'm not funny. I like to talk a lot, so for my online friends, it comes across as "wordy" most likely. But, ya know, if I took out a lot of those words and adapted to this new form of "texting" and chatting, etc., well, you just wouldn't get the "full effect" of the true "Dana." I'm expressive. And with expressive, well, comes lots and lots of words...

Now, I was going to end here, but I feel it's important to add that with all my talk about how important friendships are and getting to know people online, I wanted to add that I recently was introduced to a fellow blogger, Sweet Sara (Gitzen Girl). She blogged about being homebound and having Ankylosing Spondylitis. She very recently got sick, very sick, so sick that she did not get better. She passed away Saturday, September 24th at 11:14p.m. from complications of A.S. Thank you, Sweet Sara, for becoming an online friend to so many people...

You are not alone. I am here to stay...

2011-09-05T00:42:00.000-04:00

"Lyrics bring tears of joy as well as tears of loss. The rhythm and the beat infectious; I can be distracted from my chronic pain. Use the lyrics and music to embrace the pain and my chronicness. So, my assignment, should I choose to accept it (totally did) is to think about a personal playlist (while Apple works on the imoodpod): what songs inspire, elevate mood, give a shot of energy? And, why these songs – what about those lyrics, that singer/songwriter, band – speaks to me? By sharing – my songs of inspiration, mood improvement (or reflection), anthem(s) to my chronic illness(es), get-me-moving-beats – with other folks dealing with chronic illness(es) and chronic pain, I can open up new worlds of lyrics, musicians, musical styles." This was my entry for the PFAM blog carnival.

I immediately thought to use Michael Jackson for my artist of choice and choose a few of his songs that I feel represent what is going on in my life right now. Michael Jackson suffered a lot, and although he was a public figure, he was a very private person. He suffered from pain. He had trouble sleeping, lost a lot of weight, had what many believe to be arthritis and lupus. He also had a skin condition called vitiligo. He very well may have also been dealing with skin and hair conditions due to the lupus and arthritis as well. We lost a very talented artist, a legend, and someone that we should have probably been spending more time listening to his lyrics than focusing on what he was wearing or what he was covering up under his clothing, his masks and his sunglasses and hats. Who cares about all of that? How the hell did that affect any of us?

We need to Heal Ourselves so we can "Heal The World",

Because "We Are The World"!

We all "Cry"!

We have to start by looking at the "Man In the Mirror" for everything, helping ourselves, others, asking for help, opening up to others, etc.

Many times, all we want to say is "Leave Me Alone!"

"Don't Walk Away"! I'm not done yet. Michael Jackson has always made me feel like dancing. When I was 10 years old, I had a hope chest full of pictures of him because I wanted to marry him, sadly that dream has dissolved...

Michael Jackson has made me feel like dancing, has given me ideas for the best Halloween costumes, has caused people to memorize his dances (ummm, Thriller ring a bell?), and people know his songs from when he was a little tike~ABC as easy as 123...

He has a following that no other musical artist has, was a humanitarian, a father, a dreamer, sensitive, a poet, a loner, sad, likely depressed, in pain, suffering from chronic pain and chronic illness, suffering in silence, alone, and like many of us, afraid to talk about it and wanting to be left alone and instead considered odd and different and weird. Had he stood up for himself, admitting he was sick, becoming an advocate and an activist for those with chronic pain and chronic illness, would it have changed his life at all? I would have to say yes. I don't know for sure, but if you are suffering in silence, don't. Today, you are "gonna make a change for once in [your] life, [it's] gonna feel real good, gonna make a difference, gonna make it right..." Tell others about your health problems, educate them, people jump to conclusions many times and make assumptions because of ignorance and lack of knowledge. It is up to you to let them know about your chronic illness and pain.

"You Are Not Alone." I will always be here to blog for all of you!!! I love you all. Hugsssss!!!

Oh So Bad I Ache! Oh My God, I'm Still Awake!!!

2011-08-23T00:03:00.003-04:00

OK, Now it's time for the Sleep topic for the MOWer's blog carnival. I hope you learn a lot from this topic. I think this is an important topic for others to read about those with chronic pain/illness. It is, sadly, something that affects all of us.

What I find so interesting is that when our son was born 8 months ago, the question that was asked the most was, "Are you getting any sleep?" I always had to laugh. No, I wasn't getting any sleep, but it wasn't because of my sweet baby boy. He was amazing! He slept through the night since the day he left the hospital. I couldn't believe it!

The reason it's so interesting to me is that this seems to be the only time anyone seems to care if you are sleeping through the night, if you have a new baby. No one asks you if you have a chronic illness, especially chronic pain, if you have been able to sleep (unless the other person is also experiencing chronic pain/illness and also not sleeping). Why don't people think to ask that question? Why is it that we would only not sleep if we have a baby? It was actually torture for me to have a baby that slept through the night from the beginning. I kept thinking, "How perfect; I'll have someone to stay up with me through the night, and we can keep each other company. I will take care of my baby, and the baby will help keep my mind off my pain." Well, that is what I get for trying to think ahead and plan...

I have tried it all...new mattress, flip/turn the mattress, only use the bedroom for 2 things (sex and sleep), meditate before bed, take a soothing bath before heading to sleep, Sleepytime tea, wind down and read just before bed, journaling before closing my eyes, using a TENS unit while sleeping, pain meds, sleeping meds, heat/cold on painful areas, different positions, prayer, and many more...

Lately it has been much, much worse. I stay on the couch, and stay online until the wee hours of the morning while my hubby and dog go to bed. My son also sleeps so soundly. He sometimes loses his pacifier, his fafie. He might whine a little. I smile, and as quickly as I can enter his room to soothe him with his favorite fafie I place it back into his soft little mouth. Thank goodness I was awake.

My hubby gets so aggravated. He doesn't really like to be awakened from a deep sleep, and I always get into bed around two or three a.m. He always thinks that I have just been up watching t.v. and goofing around. It is so hard for him to understand that I just can't sleep. If I try to go to sleep when he does, I stare at nothingness. I watch the clock change from 11 to 12 to 1 to 2 to 3 to 4 to 5. By then, I do finally doze off. Then, he is waking up and getting ready for work. Then, my son wakes up and is ready for breakfast. Everyone is well-rested and ready to face the day. I on the other hand am even more tired than the day before...

Each day I am even more and more tired...

Because I am more tired, I am more and more fatigued..

I need to be able to place my head on a soft pillow and sleep...

I need to be able to find a position to sleep in on a good firm mattress and drift away to dreamland...

I need to actually have a dream again...

I don't remember the last time I had a dream...

I do remember the last time I pulled an all-nighter...last night...

I forgot what it's like to know the difference between night and day...to wake up in the morning refreshed and go to bed at the end of the day...

I want to be able to say to all the people with chronic pain/illness, "How well did you sleep last night?" instead of "How did you sleep last night?"...because I want to ask a question expecting a positive outcome rather than to ask it expecting a negative outcome...

For those of you who don't have a problem with sleep, I have to tell you, it is the worst thing to experience. To just lay in bed and stare at a dark ceiling is miserable. The fact that the pain is keeping you up to begin with is bad, but that you are so fatigued and would give anything to just fall asleep is a different kind of pain. I lay there and want to sleep so badly that it actually hurts!!!! I pray to God to help me to drift off to sleep. I try teas, meditation, hot baths, music, medication, EVERYTHING!!!! Nothing works...And to know that if I could just get some sleep, I would feel a little better.

Sometimes if my hubby wakes in the night, and asks if I am still up, I answer yes, and keep on talking. I am just so happy that someone is up with me. It isn't long-lasting, however. He soon falls asleep as I'm still in the middle of a story. The next day, he doesn't even remember ever talking to me. When I tell him about it, he gets mad that I interrupted his sleep. He doesn't even remember!!! He isn't tired, how did that interrupt HIS sleep? Oh, well.

The biggest thing that I want to get across is what it feels like, why I can't sleep, why many of us can't sleep. This is how it is for me:

The pain is so bad.

Instead, I flip to my back.

On my back, my knees begin to ache,

Oh my God, I am still awake!

My feet, my feet, I can't feel my feet!

They start out numb but then I start to feel HEAT!

My feet hurt so bad,

I feel like I could actually go mad!!!

MUSCLE SPASMS IN MY ASS!!!

Please, God, when will it pass?

I want to sleep!!!

The pain is beginning to make me weep.

Tears...

Fears...

Now crying hard.

I change positions, but I have to guard

my hip, my shoulder and elbow too.

Oh, God, what do I do?

The pain is now so intense,

and sleep just doesn't make any sense.

How do I sleep in a bed

that feels like rocks underneath my head?

Will I ever dream again

when my pain is so deep within?

It feels like my marrow is fighting back.

I feel like I could break if I hit the sack.

Burning, pounding, aching, stabbing,

Bruising, biting, pinching; all of it I'm having!!!

It's funny weird;

Each night, having the same things feared,

I want to be able to dream,

but need sleep, so it seems,

to be able to even have a dream again.

So when I think about where I've been,

I dream that I will someday have no pain,

so I can in fact dream again, all the same.

As for right now, when I lay in bed,

the pain is so bad, I often wish I was dead.

Patients for a Moment Wordless Wednesday

2011-08-21T00:41:00.003-04:00

"Words tell part of our story as we blog, but pictures often complete that story.
So instead of words, I would like to include photographs of life with your chronic condition(s) to create a Patients for a Moment Wordless Wednesday on August 24."

Each day we do so many tasks. How many things do you do in one day that involve the use of your hands? Imagine being unable to move or grab things because of intense pain, stiffness and inflammation...

Before and after my hip collapsed and was replaced, I had to use a cane to walk with. Yes young people do use canes...

Shoulder replacement surgery is not for the faint of heart...

Atlanta's Arthritis Walk. You should be an activist for your cause...

With Psoriatic Arthritis, when my psoriasis flares, it isn't pleasant. It is red, flaky, itchy, painful, scaly, and often on my scalp, neck, ears, eyebrows, elbows, knees, hands, and face (which is not a common place to get psoriasis). It is hard to hide the psoriasis rash on the face, even with make-up because the skin is so dry and even peels. It can be embarrassing because people stare and think it's contagious...

Every 4 weeks, I get an I.V. for my Psoriatic Arthritis/Spondylitis...

Healing takes a while after surgery when you have an auto-immune disease...

My tendons tend to become inflamed and sore. It makes it especially hard to move...

The fatigue from all of these & fibro is overwhelming...

Thank God for my wonderful support...

from surgery. Even a black eye after surgical removal of a tear duct plug and draining of duct due to Sjogren's complications...

I take 16 to 20 pills per day...

and vitamin supplemts...

Weathering My Chronic Body's Storms!!!

2011-08-20T19:19:00.001-04:00

Time for yet another MOWer's blog carnival post.

It's interesting how people choose to use weather terminology for everyday occurrences.

Your room looks like a tornado hit it!

The bathtub overflowed, and now the bathroom is a flood!

The dog devoured everything; looks like a cyclone tour through here!

That child is as mean as a tsunami hitting land!

Those birds were like hail as they pecked at the roof.

OK, you get the idea. I hope. I could go on and on. So if we could talk about anything in our daily lives so descriptively like it was something to do with the weather, imagine how we could describe our bodies. I'm not just talking about any bodies. I'm talking about weathering the storms with chronically ill bodies.

Our bodies with chronic illness go though so much and weather many, many different storms. Today, as I sit in the infusion center getting my Remicade infusion, I can tell you that my body has been through storm after storm and so many other weather conditions: rain, hail, sleet, tornado, cyclone, tsunami, blizzard, flood, torrential down-pour, icy roads, slick sidewalks, clouds, excessive heat, thunderstorms, earthquakes, windstorms, breeze, sunshine, clear skies and rainbows.

It's interesting too because so many people with chronic illnesses, especially pain and joint conditions, put the blame on different weather patterns for how they feel day to day. Many say if the barometric pattern changes suddenly so does the pain, or if it drops or rises, so does the way they feel. For me, if the pressure drops below 30, I know it. I have pain and fatigue and general malaise. If it rises above 30, I feel out of it, and my sinus pressure tends to increase. But I also feel it in my bones if there is a sudden increase or decrease in the pressure. I like to consider myself a human barometer because my body will let me know just before the pressure is going to rise, fall or change dramatically. Many times that tells me when a storm is on its way, when the humidity is coming, etc. I also don't do well with increased humidity and precipitation, which many times happens when the pressure drops or rises. The body know!

So enough of the literal, actual weather correlation, let's talk about my body. How have I weathered my own storms?

RAIN

When it rains, it pours! With my body, I can start with just a little cold or allergies, and it is never anything little. Just these last couple of weeks, my allergies have been fierce. I began to cough from the post nasal drip, the coughing got worse and worse, and the pain increased. How can coughing be painful? It's painful with a little thing that turns into a bigger thing called costochondritis. It is an inflammation of the connective tissue that attaches the ribs to the breastbone. In my case it involves more than just that but also the rest of the rib cage in the intercostal spacing. Every time I take a breath, it hurts. When I have a bad cough, it really hurts because the deep breathing is nearly impossible. I thought I was winded from my asthma, but it turns out I was feeling this way because I wasn't allowing myself to take a deep breath. It hurt too damn bad! Who knew that joint diseases could be such a pain! Ha, I made a funny! Of course they are a pain. I mean a pain in areas like breathing. Well, they are, and people need to know this because if you have costochondritis, and you get a cough with it, it not only rains, it pours. You are looking at torrential downpours, my friends!!!

HAIL, SLEET, ICY ROADS AND SLICK STREETS

Hail and sleet, to me, is when my body is bombarded in all areas at the same time. It happens a lot, unfortunately with chronic pain conditions. Just recently, I was driving down the road and realized I couldn't move my right pointer finger. It was stuck, swollen and red. The pain was unbearable. Now, I know what you are thinking, "Pain in your one finger? Big flipping deal." Well, the pain was cruel. My joint pain isn't just like when you stub your toe, people! It is always real, absolute, moderate to severe pain. I never complain though, I just use it to educate people about chronic pain. So I had to drive with my other fingers. Later that day, I realized the way I was holding the stuck finger, started making my wrist hurt. It began to swell and get painful and swollen. Then my wrist was stuck! As the day progressed, my elbow stuck, was swollen and red! Then the other wrist and elbow were swollen. Then my knees were red and hot. Then my ankles were both swollen. Then the bottom of my feet began to hurt so badly I could hardly walk on them. I could hardly move. I was worried earlier that day about driving. It was hard to turn the steering wheel. Now I couldn't walk to the bathroom from the couch. It was my body weathering yet another storm. It was sleeting and hailing, and it was attacking my body alone in the middle of a hot July summer! I was driving my car on icy roads and walking on slippery sidewalks, and it was dry, sunny and super hot! Can you even imagine?

TORNADO, CYCLONE, TSUNAMI, HURRICANE, FLOOD

I woke up knowing that I was getting a migraine. I have aura's that tell me one is coming. When I have a migraine, my fibro flares. I don't really know why, but it happens with me. It never fails. With my fibro, it makes it so difficult to get up and go. The fatigue is overwhelming, and it is so hard to do anything that is just the everyday stuff~get up, get dressed, take a shower, and mommy stuff~so I find it impossible to muster up any energy to exercise, even just to take a short walk. So I will just stay on the couch all day and set my son up next to me. Not moving around will make me so stiff and sore, and one by one, my joints will flare up. The psoriatic arthritis will flare. On a particular occasion that this happened, I also wouldn't eat or drink enough, so the Sjogren's symptoms flared~my eyes, mouth and nose got extra dry. I then got sores in my nose, and mouth. I had to see my cornea doctor because my tear duct was infected from getting too dry, and I had to have the tear duct plug surgically removed and the tear duct drained. I had to go to the ENT, and had to have my nose cauterized because it wouldn't stop bleeding from being so dry. Then my psoriasis flared. The scalp psoriasis was the worst. I was even losing hair. My bowels were messed up and I had to see the GI doctor and have a colonoscopy scheduled...I had weathered my tornado, cyclone, hurricane and tsunami. Then there is the flood. There is so much to wait for after so much has happened at the same time to your body. It takes a while to recover. Imagine the clean up after these storms! It can take so long to feel better, and then to get back into normalcy again. The flood waters do go down, but it takes time.

BLIZZARD, WINDSTORM, EXCESSIVE HEAT

One day my bones literally feel like they are so brittle that they are barely surviving a blizzard, and have frozen solid, that a windstorm could blow through and break every single one to pieces. Other days my body feels like it is in an oven on broil, and I am overheated. With many auto-immune diseases, we run fevers that are caused by unknown factors. Mine occur usually at night before bedtime or while I sleep. I sweat and get chills just as though I were sick, but it is all part of my auto-immune illness. How my body can burn up from such excessive heat like that; it's like when they talk about heat warnings and heat alerts in the summer time! It can happen any time for me, even in the middle of winter. What I find so crazy about this is that my body is burning up from excessive heat, yet my bones feel like they are stuck in a blizzard with windchill factors below zero. The bones are so sore and achy that it reminds me of being out in the cold, and shivering, but I'm hot! If a windstorm knocked me over, I would crumble! Are you picturing the imagery here? I hope you are.

EARTHQUAKE

An earthquake is such a great word to use when referring to my body. I have all these little fault lines throughout my different joints, well it was 6 in all but 2 were already replaced. My hips, knees and shoulders all have Avascular Necrosis. Because the blood supply doesn't reach the joint, the joint dies, then collapses, and then the only thing left to do is replace the joint. When you look at the affected joint on an X-ray or MRI, there is a crack or line that resembles the letter "C" that goes through the middle of the joint. That is my fault line. After a while, the weight-bearing joints especially, can't take the pressure on the joint anymore, and collapse and crumble. I had my left hip collapse in 2003 and my left shoulder collapse in 2009. It's actually strange that the shoulder collapsed before the the other hip and the knees since it isn't a weight-bearing joint. But basically, it's a similar idea. I couldn't carry anything around anymore on that joint, I couldn't lift or push with that arm anymore. Then one morning, I woke up and I could move it no longer! It had collapsed. These joints move at the fault line and collapse, their own version of an earthquake. So now I have to wait for each one of the remaining 4 joints affected with AVN to have their own earthquake, probably at separate times, and most likely unexpectedly. I have small quakes, where the joint moves just so slightly at the fault line, like if I go from a sitting position to a standing position, vice-versa, or if I sit for a long time, or if I exercise and move around an excessive amount. I have endured 2 large earthquakes, and will endure 4 more, unless the AVN spreads to other joints, then possibly more, and I will endure small quakes daily for many, many years. Ah, a wonderful picture~sarcasm!!!

CLOUDS, BREEZE, CLEAR SKIES, SUNSHINE, RAINBOWS

We all have bad pain days, and we all have better pain days. I can't say that with chronic pain we ever really have good pain days, but we can have good days. I consider days that have less pain cloudy or partly cloudy, and sometimes during that day, the pain is even less, so I see that as a nice breeze that blows by. If the breeze blows hard enough, then there are clear skies. When there are clear skies, these are days that are definitely better days. I can do more stuff, like make dinner, and exercise, etc. Then when there is sunshine, well those are the even better days where I can do stuff that I like to do not just want I need to do, like dance and swim, and play more with my son. And then there are the rainbows! Yes, you don't see rainbow days too much. If I had to call a day a "good day" for a chronic, I'd call it a rainbow day. These are the very rare days when I can catch a movie, go shopping, take a drive somewhere. These are harder now that the psoriatic arthritis has started to involve the spine~spondylitis. I can't sit for a long time in the same position or stand for a long time. Exercise helps a bit, but if I am flaring, it's hard to start exercise. I mostly look forward to partly cloudy, breezy, clear sky days. Sunshine and rainbows I dream about!

Significant Other~Will Never Your Eyes, Soul, Heart Forget!!!!!

2011-08-13T02:29:00.038-04:00

For this MOWer's blog carnival, we are to blog about our significant other.

When I first looked into your eyes,

I knew you would hold my hand.

On our first date, you looked in my eyes

and said, by my side, you would stand.

How did you know already that you loved me?

How did I know that you would never leave my side?

The eyes are the windows to the soul, you see,

and we gave each other our souls as we met with our eyes.

When you told me you loved me,

I already knew

that I was in it for the long-run, sweetie!

Because I Loved You too!

Unfortunately, you were in it too,

and your long-run was quite bumpy.

My life ended up quite chronic and way too true!

When you said "will you?" you also got my chronic pain~crummy!!!

I said yes! without a thought.

I know you had at least one or two...

There hasn't been one struggle that together we haven't fought

because we are soul mates, and that is what we do.

For richer, for poorer, in sickness and in health,

If only we knew how hard it would be.

I never wanted wealth,

but one day with no pain would be SWEET!

You have made each day a little better,

and each night with less pain,

You have made me able to write this letter,

and given me a kiss that takes all the bad away!

Do I take you to be my husband?

Yes, yes, yes!

I would do it again and again.

You have kept me from becoming a complete mess.

You have taken on so much

from helping with our home,

to cooking without a fuss,

and most importantly--being my caretaker/caregiver all on your own.

You bathed me,

shaved my legs and washed my hair.

You help with our baby,

and you always care.

I have had surgeries,

even replaced my joints.

You have taken me for I.V.'s and helped with injuries,

and you have always been there, which gives you brownie points!!!

I will say "I do" again and again,

I would hope you would too.

In this relationship, I win,

but I hope that you would also again and again say "I do".

I hope that just because my body is falling apart,

you will always know who you met,

when you first looked into my eyes, into my soul and saw my heart.

That person is still there and will never your eyes, soul, heart forget!!!!!

I Click My Heals Together Three Times...There's No Place Like Home...There's No Place Like Home...There's No Place Like Home...And I Find My Happy Place!

2011-08-02T01:25:00.001-04:00

"We've all heard the expression 'Find your Happy Place.' That may be a tough thing to do as a chronic chick. So this edition of PFAM asks 'Where's your Happy Place?'"

I could easily say my favorite place to go is the ocean. I love the beach and the sound of the water as the waves hit the shore. It is peaceful and relaxing. I could also say that I enjoy walking through a particular park in St. Louis. I love the neighborhood that surrounds it, and it reminds me of when I was younger, meeting my husband, and starting my life as a young adult. I could also say that going to the aquarium in Georgia & Kentucky calms my soul. I have mentioned before that I so loved to dance, so anywhere I could dance would certainly bring out that passion. Of course, I have yet to mention the one place where I truly find HAPPINESS.

I don't have to go very far, you see...

The best part about this place is that anyone can go there, you don't need an invitation, you don't need a plane or a car, and you never have to leave your living room!!! That's right. My Happy Place is a state of mind! I can get there when I am having a relatively pain free day and have friends to share laughter with, or if I'm having a painful day and use humor and laughter to simply release endorphins and make me feel better. They say laughter is the best medicine. Well in this case, laughter, humor, a comedy, a joke, the newspaper's funny pages all can take me to My Happy Place.

I have learned that every single day it is important for me to take the time to think about the important people in my life and anything else that God has blessed me with in my life. No matter how badly I think I have it, there is always something I am blessed with. It is never helpful for me or anyone to focus on the negative, but sometimes we do get stuck in funks, especially when we suffer from chronic illness and pain. If everyday we take that time and focus on the positive, like me you just might find that it helps you get to your Happy Place much easier. It makes since. Doesn't it? When we concentrate on the positive, we are happier than those who dwell on the negative.

It might even help if you take it a step further. You could actually write a thank you letter to someone who has helped you out significantly. You don't even have to actually give that person the letter. Just putting those words down on paper or typing them out on your computer will amaze you. Expressing gratitude shoots the happiness quotient up a notch! Afterward, I'll bet you even stay in your Happy Place longer than if you didn't write the letter.

I have found that finding My Happy Place is easier when I am doing something that I love. I enjoy many different things so I am extremely fortunate to be able to get to My Happy Place often. Writing and blogging, painting, dancing, swimming, and meditating are just a few of the activities that I love to spend time doing. So when I'm able to have fun doing something I'm good at, I'm at My Happy Place in no time. What's better is that one of my strengths is social connection. Given the chance to interact meaningfully with other people and practice self-expression, allows me to choose hobbies that involve others. I get to meet lots of different people, and many times I can do it from home, even online. So how great is it to be able to go to My Happy Place when I'm online, say chatting it up with my facebook friends or other social network buddies who also have chronic illnesses, who are also looking for a social connection, to interact with someone and find their Happy Place!

Finding the time to volunteer, donate my time, do simple acts of kindness, and just being generous basically adds up to doing good to others. I feel that is extremely important to getting to My Happy Place quicker. Ya know why? Well, it raises the happiness factor. It just does. You give to others; you are happier. Therefore, you reach your Happy Place much faster than if you didn't do good to others. Simple!

Mostly though, I am able to get to My Happy Place with my little family. I just have to sit in our sun room with baby toys spewed all over the floor, my hubby making funny noises at our son, my son sounding like a pterodactyl screaming, my dog licking the food off my son's face, and me~well, I am just in awe!!! Yes, this is what I always wanted! I always wanted this! Believe it or not. I prayed for this. Who wouldn't want a child that sounds like a pterodactyl, a dog that keeps their kid clean, and a hubby who sounds just like the baby!? It is exactly what I pictured My Happy Place to be. When I'm here at my home, and in that "Happy Place" state of mind, it's a relaxed, calm, peaceful kind of happiness. But whenever I am away from my home and want to go to My Happy Place, I go here to the sun room with the toys and the kid and the dog and the hubby!

These are my steps to getting to My Happy Place since you can't get there by car, plane, train or boat. You have to train your brain. This is how I do it. I hope it helps you. I hope that you can enjoy your Happy Place as much as I enjoy mine. I hope to meet up with you sometime. Perhaps our Happy Places will cross paths.

First, I decide, "Do I want to be happy right now?"
If the answer is yes, then next, I tell myself that I have permission to be happy.
Then I understand that I am in control of my own happiness.
It is OK to feel my own feelings and to laugh.
Focus on the positive.
Show gratitude.
Focus on my strengths.
Interact meaningfully with others.
Do good and be kind.
Live in the now~find My Happy Place!

Hope

2011-08-01T00:22:00.003-04:00

I have faith that tomorrow they will find a cure
   for all those with joints~pain and stiff.
And have confidence that all of us who dream, plan and wish
only hold in our hearts an optimism and a courage that is pure.

The likelihood that many of us could end up as cripples
   is a possibility that is high.
   Chances are that you and I
can expect a cane, then walker, then wheelchair~the effects that ripple.

I trust that you desire for more.
   For I yearn to dance!
   I again want to look forward to a second chance.
I want to at least be as normal as I was before!

I long to take endless walks,
   to not have to plan for rest breaks,
   to just anticipate~
For anything fun! And no longer expect that others will gawk.

If I can set one goal today,
   my wish is to set my expectations high.
   I promise to myself and others to aspire
to reach these in good faith.
*******************************************************************
I have hope that tomorrow they will find a cure
   for all those with joints~pain and stiff.
And have hope that all of us who hope, hope and hope
only hold in our hearts a hope and a hope that is pure.

The likelihood that many of us could end up as cripples
   is a possibility that is high.
   Chances are that you and I
can expect a cane, then walker, then wheelchair~the effects that ripple.

I hope that you hope for more.
   For I hope to dance!
   I again hope to hope for a second hope.
I hope to at least be as normal as I was before!

I hope to take endless walks,
   to not have to hope for rest breaks,
   to just hope~
For anything fun! And no longer expect that others will gawk.

If I can set one hope today,
   my hope is to set my hopes high.
   I hope to myself and others to hope
to reach these in good hope.

In Hopefulness,

Dana Morningstar

This is for the next MOWer's blog carnival. I hope you all find what you need from this blog post!

When Regret Gets The Best of Me...Regret Enters The Dark Hole With Me!

2011-07-09T00:46:00.000-04:00

For the third post for the MOWer's Blog Carnival, the subject is Regret. Wow! Now there is a topic that a person with any chronic illness that involves disabling pain would understand!

I think we all probably could have a lot of Regret if we allowed ourselves. We can be rough on ourselves too as chronics. We have to give up a lot; we miss a lot out of life; we lose a lot of friends (or I guess they weren't true friends to begin with, but it still hurts); our family gets smaller (they stop calling, stop listening--if we were lucky to have them ever start listening--they simply fade into the distance); our dreams disappear or remain just that--dreams; our goals become inconceivable; life becomes less fun; and the world becomes smaller.

I believe that when we start to think and feel this way, that is when we begin to regret things in life that we have done or that we never achieved. We start feeling this darkness, this sadness, emptiness, and we feel like we can't get out of this dark hole of dwelling on all of this "stuff." That is when the regret enters the dark hole with us...

...Remember when you were a young girl?...You were such a beautiful, delicate ballet dancer. You were SO young then. You danced at the performing arts studio three hours a night and went to school. You had so much energy then! Remember when you were in contests and shows and tours with professional ballet companies? The GRACE was flowing through your veins, and I do believe you were high on life! You were so joyous then, and the music was a part of you. Flowing, floating, leaping, bending; strong, determined, directed, creative; over-achiever, highly-commended!

You had such talent! You were so far ahead of the other young girls your age. You could have made it so far. What if you continued further as a dancer? Where would you be today, Dana? If you didn't stop dancing so young, would you have been able to still be a ballerina? Well, probably not, but if you stuck with it, you could have gotten in at least another five years, maybe ten. But you were a quitter!!! Quitter, quitter, quitter! You will never know now how far you would have made it with your exams with the Royal Ballet in London. Sure, your first time, you got Honors--not one point taken off for anything--not for the written part, the oral part or the dancing part. And of course you got Highly-Commended for your second exams because you got one point taken off, and I bet you even remember what it was for. Don't you? What if you kept dancing. Would you have continued to do well on your exams? Would you have continued to move up? You will never know, will you?

I'm here now to help you remember all that joy that ballet gave you. I'm here to remind you that you quit before you were too sick to keep dancing. Then you actually were too sick and had to stop your love for ballet. Now I'm here to really rub your nose in it. You can't go back and do it over. You don't get to press rewind and play it all over again. It's too late!! Quitter, quitter, quitter! (by: Regret)

After Regret makes you feel horrible about yourself for a decision that you made years and years ago, then you start to focus only on that. This is the one thing that always allows Regret to grab hold of me. I loved ballet with a passion that I cannot even put into words. I dream about dancing when I sleep at night (well when I do sleep, which is rare these days). I dwell on it so much sometimes when Regret gets the best of me, that I can't stop sobbing. The tears flow. I gasp for air. I can never be that ballerina again...

I am not even graceful anymore. My own husband never knew me as a ballerina. I think that's sad because that really is the true me. I will always be that ballerina deep inside. I just can never again glide across the stage on my toes, leap high into the arms of a gentleman dancer who catches me safely, or twirl so fast that my head whips quickly so I can spot something on the side that I'm turning toward so I don't get dizzy. My feet ache so badly from plantar fasciitis and Achilles tendinitis, and my toes all have arthritis in them. I have a hip and a shoulder replacement, and my neck will never "whip" again because of the arthritis and bulging disk in my neck and lower back.

Just so everyone knows, I stopped dancing for a boy...I had a boyfriend who played hockey. I wanted to watch his practice and his games, so I QUIT ballet! Yes, I really was a quitter! I was young, so I didn't think I was never going to have the chance to go back to ballet. I thought I had all the time in the world. I Regret thinking that way...

From here on out, I will never not do something or put something off or quit something because I think I could take care of it at a later date. Anything can happen. My Avascular Necrosis happened, and it happened very quickly in six joints, and psoriatic arthritis happened, and then psoriatic spondylitis happened, and sjogren's happened, and fibromyalgia happened, and hypertension happened, and endometriosis happened, and hemiplegic migraines happened, and pseudo tumor cerebri happened, and a hip replacement happened, and a shoulder replacement happened, and all the surgeries, meds, and side effects that go with it all happened!!!!!

I have realized that if we look back at everything that we missed out on, and dwelled on it and Regret all that we could have done because of it, we can't move on in life. It is like being stuck in that black hole and having Regret treat us like shit the whole time--tearing us down, reminding us of stuff we did or didn't do, making us remember stuff we don't need to remember or we want to forget. Ya know we might just want it to be that--a memory.

For me, I have made ballet a wonderful memory. I have learned to fill it with other things. The music and I were one with ballet. I had always "felt" dancing because of the music so now I take dance classes that are less stressful on my joints. I take classes like NIA and belly dancing. I love them, by the way. No, they aren't ballet. To some, they may be the most wonderful dance classes ever. To me, nothing will ever replace BALLET, but I am no longer in that dark hole with Regret!

I would love to one day teach little children ballet. I know the fundamentals, and I love children! I think that just might fill that void almost completely.

I would like to end this by saying that I may not be able to actually dance as a ballerina anymore, but in my heart, mind and soul, I will always be a ballerina. No one can ever take that away from me. I will continue to dance in my daydreams and in my dreams while I sleep. And I will leave you with this...

You don't wake up one morning and say, 'I will become a dancer.'

You wake up one morning and realize you've been a dancer all your life, and you say to yourself, 'I am a dancer. I am dance!' (By: Anonymous)

My New Found Independence!

2011-07-02T02:03:00.000-04:00

Since our next carnival happens around the USA 4th of July holiday, we were asked to submit a post on the theme of independence.

Let's face it: chronic illness can definitely be a challenge to a person's autonomy and self-reliance; how has chronic illness impacted my self-sufficiency and ability to do things for myself?...

Independence is such a strong and powerful word for anyone with disabilities. When I say the word, I get a lump in my throat and fight the tears in my eyes. For those of you who know me well, you know that I have been through some pretty rough times, and I have had to depend upon others, mainly my husband, to take me to doctor appointments, reach for things on shelves, and do many of the household chores. I had come to think that I would never reach a point where I could actually feel the freedom of independence...

Many people that didn't know me through the really hard times, and yes I still have hard times, but I'm talking the times where I needed help to get out of bed, to get in and out of the shower, to shave my own legs, and so on, find it hard to believe I was ever that dependent on another human being. Well, let me be the one to break it to ya...I was. I was in a wheelchair, then a walker, then a cane, and slowly made my way out of using the cane. Then when my shoulder collapsed, I was unable to use my right arm for anything. Then it was in a sling until it was replaced. Then it was in a sling after it was replaced, then the range of motion was limited for several months. Now I can reach up and grab things off the top shelf--well not quite the top shelf because I'm not tall enough!

I was originally dependent on others for my lower half of my body, then it was the upper half of my body. Now with all the problems with my spine, I'm having some problems with depending on people for only certain things like making the bed and bending over for some things, as well as lifting heavy things. Also, my fingers are still in pretty bad shape so I am sometimes dependent on people if I need to do anything that requires intricate work with my fingers. Also, my other hip and both knees will collapse at some point and so I have to be prepared for the fact that I may have to depend on my hubby once again for my lower body again, and my other shoulder will collapse at some point as well, so I will be dependent on my hubby for the upper part of my body as well. I don't like to dwell on it, but I keep it in my mind so we are prepared for when it does happen.

At this point, other than some minor issues of dependence, which I would consider to be more than I need some help now and then. Right now I depend on no one. I feel as though I can finally say I am FREE! I feel a freedom that I never thought I could ever feel. Thank God! I get myself out of bed, I take showers alone, I dress myself, I take care of my baby while my hubby works,--feeding, diaper changes, baths, playing on the floor, etc.--shopping, cooking, cleaning, and laundry! I really, truly feel so free because of this wonderful independence. What a gift!

This fantastic gift of independence came at no better time also! I had my shoulder replaced in March and adopted our first son in December. I must say, all the stars must be aligned just right for me! Independence is a gift unlike any other gift. It keeps giving every single day when I figure out more and more I can do with this new found freedom!

I know that the freedom that I am given with this independence will not last forever. There will always be this impending doom leering over me. I know what my future holds with surgeries, etc. I will have to live each day as though it is my last day of freedom...my very last day to enjoy my independence.

"Guilt"

2011-07-01T00:31:00.000-04:00

It is that time again! It is time for the second MOWer's Blog Carnival. The title is "Guilt." Now, I just wrote about guilt not too long ago, but it is something that seems to enter the lives of someone with chronic illness/chronic pain quite often. Actually, being human, we are the only animals that are faced with the feeling of guilt. When guilt surfaces, it eats at our soul and resurfaces over and over again. Many times the guilt can make the illness even harder to bear.

I am currently faced with the guilt of not being a good enough wife. We recently had visitors for 3 weeks in a row--friends, then a friend, then my parents, then my mother-in-law, and then the rest of the family. My friend and her hubby and 2 kids stayed with us a couple days, and then went home, then my friend came back by herself so we could go to a concert. Then she stayed for my son's baptism since she is the Godmother. Then my mother-in-law also stayed with us, and the rest of the family stayed in hotels. So family from out of town and friends that live in town came for the baptism on Sunday. The baptism and celebration to follow turned out to be wonderful, but the planning and getting all the food, drink, cake, and decor together was a lot of work. Also, getting everyone together, and knowing that everyone was traveling from out of town to get here, was very stressful. Yes, it all got done, and it was a beautiful ceremony and a lovely celebration. But when it was all done, and everyone left, I literally collapsed!

I slept all day yesterday whenever Michael was taking his naps. When he wasn't napping, I watched him play on the floor with his toys or in his pack 'n play or his jumper. Today, I slept again all day!!! My hubby acted like he didn't even understand why I was so tired/fatigued/in pain. He wondered why things weren't done, and he wanted to know how I was able to take care of Michael if I couldn't do anything but lie around all day.

Here is where the guilt comes in...

I know I need to do laundry. I have sheets and blankets because we made up places for guests to sleep. I have regular laundry to do that I didn't do while guests were here. I have regular cleaning to do and dishes. Now I need to continue with the normal everyday stuff~make bottles, make dinner, change diapers, feed Michael, feed my hubby, take the dog out, feed the dog, walk the dog, etc. I can hardly do the normal daily activities, let alone anything extra from having guests for 3 weeks. My housework is so far behind, and I have no energy!!!

I feel so guilty that I can't be a normal wife and parent!!!

The use of guilt here is not referring to the fact of being guilty of something, but to seeing or projecting my mistakes, while not knowing what to do about them or refusing to correct them. In this definition, guilt is a negative, paralyzing emotion, based on non-acceptance of myself or the situation, and it leads to depression and frustration rather than change or improvement. Guilt is usually a negative focus on myself: I am a bad person. I can't bear myself. I am not worthy.

What can I do about it?
1 - Reflect on responsibility. Often it is/was not my responsibility or fault! Blaming myself for everything negative that happens is a form of ignorance and self-centeredness. Of course, if I am careless and intended to cause problems, then I should take responsibility for my action and see to it that I will not repeat this regrettable action. Instead, maybe I can do something to make up for it.

2 - Reflect on motivation. An act done with positive intention and without self-interest is not negative, although other people may be harmed by it. The suffering experience of others is strictly speaking the result of their own actions. However, we may have made some mistakes like wrong communication or insufficient attention, etc. If this is the case, it should just be a reason to change our habits by improving our communication or mindfulness.

3 - Changing or accepting. If you can change yourself or the situation, change it! If you can't change yourself or the situation for a good reason, accept it! Not acting where we can and could act can lead to frustration and guilt in the long run; just like acting where we actually cannot do anything.

4 - Analyze the use of feeling guilty. It is based in the present; it is intelligently concerned with the future effects of your recent actions; and it leads to remedying the damage already done and to caution about repeating such an act.

5 - Forgiving. Making mistakes is an inherent human quality: if you don't make mistakes you are definitely not a normal human being anymore. If we are unable to forgive ourselves, we will never be able to properly forgive others.

6 - Reality check with others. If you can overcome your feelings of guilt and shame somewhat, try to discuss these matters with others and see if your reasons for feeling guilty are really valid.

7 - Emptiness. An ultimate cure for all delusions, realizing emptiness will also rid our mind of guilt.

In summary, try to transform the lack of self-confidence, ignorance and mental paralysis with repentence, purification, forgiving yourself, love and compassion for yourself, openness, reality check with others, and wisdom into positive action, fearlessness, and self-confidence. Believe it or not, this is based on Buddhism! They don't believe there is such a feeling or emotion as guilt. So this is how they explain the human experience of guilt and repentence. For Buddhists, they believe that guilt has such a prominent place because of the Judeo/Christian background of our culture. The concept of being born onto the earth with "original sin" - for which you personally are not even responsible - easily puts a feeling of guilt in your minds (I am bad, even without doing anything wrong). Furthermore, the presentations in several Christian traditions can give you the impression that you should feel guilty and ashamed. I believe that this type of guilt is a socially learned emotion. Tibetans do not even have a word for it! If that is correct, it is not even a basic human emotion, but a culturally - imposed type of mental frustration; which means that you can relatively easily overcome it by un-learning this artificial emotion.

Are You an Advocate for Your Own Health?

2011-06-30T22:52:00.000-04:00

For our new Masquerade of Words (Spondylitis Blog Carnival)'s (MOWer's) our first blog topic has been chosen...the first is "The Definition of a Health Activist." This is an extrememly interesting topic for me because I am not only a patient with multiple illnesses, many medications, who has had numerous surgeries, but I am also an RN. I have been on both sides of the hospital bed, if you will. I have been the one providing the care and also the one receiving the care. I have been advocating for myself and advocating for all my patients. It is extremely important that you advocate for yourself because you cannot always count on the fact that others will advocate for you. If you have a close friend or family member who will also be a patient advocate for you, then that is even better. And of course, if you are lucky enough to have your physicians and healthcare providers also as your advocates, then you are one of the exceptions!!!!

The most important thing to remember when faced with a health crisis is to be an active part of your healthcare team. All decisions must be made WITH you not FOR you! You must educate yourself about your illness and all your treatment options. By being an active member of your healthcare team, you are sure to see results and improve. Begin by researching your illness so that you begin to understand what is wrong with you. One excellent site to begin is www.nih.gov (National Institute of Health). That site will also link to other equally helpful sites. Remember that there is no one treatment that is right or that works for everyone. Every person is different and unique with equally different and unique needs, beliefs, cultures and spiritual values.

There are several important factors to be considered when being a healthcare or patient advocate for yourself. Curiosity may have killed the cat, but it can save your life! Just as you may shop around to buy a house or a car, use that same spirit of inquiry to find your own medical care. Ask questions and investigate! Always, always, always seek out a second or even a third opinion. A good doctor or healthcare provider will welcome your research. Do your research carefully and choose your doctors ad healthcare providers wisely. There are many people who love and care about you. You are very important to many, many people. Keep that in mind, when you think you do not want to do all the work involved.

Also, keep in mind that doctors and healthcare providers are human, and humans make mistakes. Do a background search on the hospital as well as the physicians you choose. You can contact your state's Board of Medicine/Medical Examiners for information on the physician at www.fsmb.org/directory_smb.html. You can compare the quality ratings of the hospitals at www.ConsumerHealthRatings.com as well at www.HealthGrades.com, which are both independent sites. I recommend, if possible, to choose a hospital that specializes in the care of whatever your particular condition is.

A federal regulatory body that governs all healthcare institutions which accepts federal funds--The Joint Commission on Accreditation of Healthcare Organization (JCAHO)--along with the Centers for Medicare and Medicaid Services started a national campaign to help

patients advocate for themselves and prevent medical errors: The Speak Up Initiative.

The Speak Up program encourages people to: 1. Speak up if your have questions or concerns. If you still don’t understand, ask again. It’s your body, and you have a right to know. 2. Pay attention to the care you get. Always make sure you’re getting the right treatments and medicines by the correct healthcare professionals. Don’t assume anything. 3. Educate yourself about your illness. Learn about the medical tests you get. Learn your treatment options and ask about your treatment plan. 4. Ask a trusted family member or friend to be your Advocate (advisor or supporter). 5. Know what medicines you take and why you take them. Medication errors are the most common healthcare mistakes. (A wonderful resource to learn about your meds is www.rxlist.com. Learn this site and tell others). 6. Use a hospital, clinic, surgery center or other healthcare institution that has met federal guidelines. Ask about their Joint Commission rating on their quality standards. 7. Participate in all decisions about your treatment. You are the center of your healthcare team!

Remember, it is your right to refuse treatment until you understand what is happening.

Watch for the simple things like hand washing. All healthcare workers must wash their hands before working with you. Stethoscopes should be washed as well. Ask your nurse to identify all medications before you take them. Have your doctor clearly mark the site of your upcoming surgery. This is really important as mistakes are made every day. When you have a healthcare issue, your illness is too complex or the system is too confusing make sure you have someone who can help you through all the confusion.

Remember to protect your rights and safety, educate yourself and advocate for yourself with all your medical providers. I wish you the best of health and will assist you in any way I can in your healthcare journey.

Be safe….ask questions!

My Bestest Friends!

2011-06-24T19:19:00.001-04:00

When I found out that the next blog carnival with Chronic Babe was supposed to be all about my Best Friend, my first emotion was pure happiness, followed by excitement, and then anxiety. OK, you may be wondering why anxiety. Well...I can't just pick one!!! I have narrowed it down to Ang, Kelbi, Susan and Carlene. Each one of these people have brought so much to my life, have entered my life at different times,--perfect times actually--and each one of them is as strong of a woman (or Babe) as the next one!!!!

I will begin with Ang. I have known Ang since we were 6 years old. We have a bond that starts with both of us being Italian and Scorpios with birthdays in November. We both have always loved dancing and enjoyed the same music. We even just celebrated this likeness this week when we attended the New Kids On The Block concert. Yes, we are 36 years old! Don't judge!!! We had the time of our lives! We went out to dinner, split a bottle of wine--which for me is a rarity in and of itself since I don't drink alcohol because of my meds. We reminisced about being young and attending the NKOTB concerts when we were young. Ang is the type of friend that I can have a no-holds barred kind of fun with. She is also the kind of friend I can trust my deepest darkest secrets with. She knows me better than my own husband of 11 years. She knows how to bring me out of my lowest points and how to make me laugh until I pee my pants! She supports me when I fear no one else will. I can text her at 3 a.m. I can get on a plane and fly to her home and stay with her for a day, a week or a month because I need a friend, because I want to share my excitement, because I need a shoulder to lean on, or just because I want to take a trip somewhere fun--in a house with 2 kids to play with during the day and someone to watch scary movies with at night!

Ang is a special person because she truly listens when I talk to her. She doesn't pretend. She doesn't act like she understands if she doesn't really. She truly understands. She may not go through the same type of health issues that I am and have, but she has had her fair share. She does have some pain issues that I'm aware of. I know she has migraines that she suffers from often. She never complains about them. She may say she has one, but never whines or burdens anyone with her pain. She wears hearing aids because she lost her hearing due to Scarlet Fever when she was around a year old. I have never considered her to be different from anyone because she wears the hearing aids. She has never asked for or wanted to be treated any different either.

Ang also lost both of her parents by the time she was 30.This is a loss I cannot even imagine, a pain I have never had to experience. She has had pain in her life too, just not the same pain that I have endured. So she has taken what she has went through, and just as I have done with my painful experiences, has become an even more compassionate and understanding person. Pain in any form can allow you to enjoy life more, to hug your children tighter, kiss your husband one more time each day, and notice how bright the sun is and just how beautiful even rain can be (especially when you are running up steps all dressed up in heels going to the NKOTB concert~something only Ang and myself would understand!)

Ang and her hubby Rob have two children, gorgeous children, a boy and a girl! They have raised them well, and they will be wonderful adults who will know to treat everyone with respect, even those who have challenges. They don't see people who are different from them as being bad or wrong. Great job, Ang and Rob! When we were in the process of adopting Michael, my husband and I decided to ask Ang and her hubby Rob to be the legal guardians to Michael if, God forbid, anything were to happen to us. Now of course, I see Ang with Michael, I see a Mommy! I see Rob with Michael; I see a Daddy! I really hate the term " legal guardian." I would hope if something happened to us, Michael would call them Mommy and Daddy. That is how good of a friend she is to me! She is also going to be Michael's Godmother in a couple days when he is baptized. Michael is a very lucky little boy.

Kelbi, Susan and Carlene all share my pain. I mean they all have a form of arthritis and fibromyalgia. I am able to call or email them any time of the day to talk about anything. It is especially wonderful to have friends who share something like this because they understand exactly what it's like to not be able to get out of bed, to cancel appointments, to feel so fatigued you can't even wash a bowl in the sink or stand to take a shower. They just "get me." It is sad that what brought Carlene and Kelbi to me was the Arthritis Foundation. If it weren't for our disabling conditions and wanting to help other young adults and other people learn to help themselves to deal with the pain and fatigue, we may have never met. If I didn't have arthritis, I wouldn't have been seeing a counselor, and I wouldn't have been introduced to Susan.

Kelbi is considered "Aunt Kelbi" to Michael. She has not only been a wonderful support to me when I needed to vent my frustrations with these awful chronic diseases, a fantastic knowledge base when I had questions about certain treatments that I was considering, and a smiling face when she comes over with lunch and a beautiful gift for Michael. She is the best person to go do things with like Crystal Bowl Meditation. I can't think of anyone I would rather go to that with!!! I have to give her a call to do that again sometime soon, actually. I am due for some Bowl Meditation about now!! She also is a talented photographer who helped us with our photo album for the adoption of Michael. She is a Reiki Master, which is just another connection we have since I am also an energy healer. The universe has somehow brought us together.

Susan was introduced to me by my counselor. We were both introduced to an energy healer instructor Beth. We learned how to better direct our energy and use it to help others. We began to learn that we are very much "soul sisters." She and I both have spondyloarthropathies. We both have fibromyalgia. We both are learning about energy and its use to better others and the world around us. We both rescue dogs. She is also known as "Aunt Susan" to Michael. She lives a little drive away from us, but she makes the drive to come see her "nephew" and me. Susan has dealt with the pain of arthritis, fibromyalgia as well as other pain in her past and divorce. She is a great friend to go to lunch, get cookies at our fave place, try new places around town, chat online, by phone, and she always saves me on my Blog Talk Radio show by being the only caller. She is a great secret keeper!

I met Carlene when my husband was a visiting professor. I decided to keep myself busy and took a took a class to be an instructor for a self-help class for people with arthritis with the Arthritis Foundations. That is the first time I spoke to Carlene. She is a person who has not only had pain in her life from arthritis and fibromyalgia as well as infertility and a painful childhood, marriage and now a divorce. She has given me strength through her compassion, understanding, courage and hard work. She went back to school after getting married and having a family (a wonderful son). As she learned how to stand on her own two feet and that she did not need a husband to make it in the world, she got a divorce and continued through her schooling. She is studying mental health. She would love to help others with chronic disease/pain conditions. This has made me want to do more. So I have begun to write a book and have started my Blog Talk Radio show. She is a fantastic Mommy. Her son will grow up with such respect for women and people with disabilities and challenges because of Carlene~because he has lived this life with a mother who has denied him nothing although she cannot always do everything the same way others can.

So in summary, I have four Bestest Friends: Ang, Kelbi, Susan and Carlene. They each have entered my life at different times, in different ways, for different reasons~all staying to support me, love me, care for me, understand me, and always be there for me!!! Thank you so much. What would I ever do, where would I ever be, and how could I ever go on without you all?

My First Guest Blogger!

2011-06-01T01:22:00.024-04:00

I have met such a wonderful person and fellow blogger online. She also is a chronic illness blogger who wants to get the word out to people about health, activism and how illness affects us and our daily lives, while keeping it real and fun! Her name is Kelly Christal Johnston, and the name of her blog is Hurting But Hopeful. She describes herself as: "...a mother and wife first, and a patient with Ankylosing Spondylitis second...meant to be an AS Activist, and...take(s) that very seriously. [She] hope(s) [she] can not only teach the world what living with AS is about, but...[she] can help others like [her] deal with the toll it takes on not only our bodies, but our souls. So with this blog...[she] hope(s) you can get to know [her], [her] goals, and more about AS." I chose her as my very first guest blogger! So, please read this wonderful, blog post, by Kelly. She writes from her heart, mind, soul and body!

I Want

By hurtingbuthopeful

I want to be a grandmother one day, I want to sit in a rocking chair on my front porch next to my husband, while I watch my grandkids play in the front yard and drink lemonade.

I want to give all my worries to God, to never have to carry their weight on my shoulders again, to know He will take them and replace them with absolute Faith.

I want my family to know that I will always be here for them. That I will do anything and everything in my power to make this life the best I can.

I want to be able to take my kids to the park, to the zoo, to the beach without having to worry about medications or the weather or how my body is going to feel that day.

I want the world to know that there is a group of diseases called Spondylitis, and I have one of them, Ankylosing Spondylitis. I didn’t ask for it, I don’t want it, but it’s here so I need to make the best of it.

I want my body to know that it can fuse my spine, and it can damage all my joints, but it will not damage my spirit and my soul that lives within.

I want my kids to know that I didn’t have this disease before I had them, but I do have it now, and even though I know how hard it is to be a mom with AS, I would never not want to be their mother and I will always try to be the best mom I can be.

I want my friends to know that I hate having to cancel plans, and I hate not being able to answer their phone calls. I wish I wasnt that sick friend who flakes out. I will always do the best that I can to be there for them, disease or not.

I want my dad to know that I love him, and I am so proud of him. I want him to know that even though I can’t work like I used to, that I am still me, and I will still try to make him proud.

I want everyone to know that my mother is in Heaven, and that she has been there for over 10 years, and I still can’t think about what that means. My heart will never be whole, and I walk around expecting people to see me falling apart.

I want all medical professionals to know that people with pain didn’t ask to hurt. Please treat us the way you would treat your own parent, spouse, or child, and when a patient tells you they need help, help them without judgement.

I want to wake up without pain, I want to get through an entire day with nothing but happiness and joy. I want to be carefree and just have fun.

I want to fall asleep with ease, and to sleep like a baby, then to wake up feeling rested and healthy.

I want to look to the future with hope and great expectations. I want this disease to know it will not keep me from making goals, or from accomplishing them.

I want to be free of bitterness and anger. I want to let go of the attitude that I am generally unaware of. I want everyone to like me, I want everyone to know who I really am on the inside.

I want to be healthy. I want my body to work right, and to be at a healthy weight, to be able to touch my toes, and to pick up my kids.

I want my body to be the 32 years old it is, instead of the 92 years old it feels.

I want to know that all my friends are happy and healthy. I want them to know they will never be alone, or in pain, or sad again, that we will always have a solution for every problem.

I want to be understood. I want to be able to communicate my feelings accurately and to be able to help others with my words.

I want my students to know that I cherish the years I had with them. I want them to know I am proud of them and I love them like they were my own children.

I want everyone to know that the sky is the limit. Life is what we make it, so lets make it great.

I want my husband to know that I love him more than anything in this world. He completes me, and our lives may not be perfect, but I am completely in love with him, and I will never give up on us.

I want those of you who read my blog to know that it means so much to me, your comments and encouragement gives me strength I didn’t know I had, and you are not alone as long as I am around.

I want the future to be amazing, I hope it is full of good surprises, full of family and friends, and full of perfect memory making moments.

I want to remember that sometimes things won’t turn out the way I would have wanted, and that I will be ok with that. I want to always keep in mind that life has this funny way of working itself out.

I want a cure for all illnesses, but especially for Ankylosing Spondylitis, and for the ignorance that surrounds this disease.

What do YOU want?

Did you like the idea of having guest bloggers? If you are interested in being a guest blogger, please send an email to: danamarton74@gmail.com or reply to the comment section of the blog post. Also, start thinking about topics for blog carnivals. I am going to begin hosting blog carnivals with Kelly!!! Yay!!!

What the heck are biologics?

2011-05-26T22:50:00.004-04:00

I had been asked by several people in a Facebook group and also someone had asked me twice on my Blog Talk Radio Show, I Already Gave My Right Arm To Be Ambidextrous!
if I would post information on the biologics for inflammatory arthritis/psoriasis. I did some research, had my radio show for part 1 about the biologics, and now am compiling everything so my followers can read the information that I gathered.

I found my information online from Web MD, the National Psoriasis Foundation, Wikipedia, From Your Doctor.Com, MedImmune, the FDA, SkinCarePhysicians.Com, Surgical Biologics, Rheumatology, the Psoriasis Association.

Biologics are among the newer treatments for psoriasis that have revolutionized treatment of moderate to severe psoriasis and psoriatic arthritis and have become an important treatment option for these people that have not responded to other therapies. Unlike other therapies for these conditions, these biologics are considered to be a potentially safer option for long-term therapy. Some of these biologics have been shown to slow or stop the joint damage of psoriatic arthritis. In the last decade, the Food and Drug Administration (FDA) has approved several biologics for the treatment of plaque psoriasis and psoriatic arthritis. These are a few of the biologics approved for psoriasis: Amevive (alefacept), Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab), and Stelara (ustekinumab). Before the biologics, people with psoriatic arthritis could take medication to alleviate the symptoms, but treatment could not prevent joint damage, which can cause lifelong disability. The biologics also have proven effective for some people when other therapies have not worked. Biologic drugs, or "biologics," are a relatively new class of treatment for psoriasis and psoriatic arthritis treatments. They are given by injection or intravenous (IV) infusion. A biologic is a protein-based drug derived from living cells cultured in a laboratory. Biologics are not new medications. While biologics have been used to treat disease for more than 100 years, the changing of modern day molecular biologic techniques has accelerated their use in modern day medicine tremendously in the last decade. Vaccines and insulin are considered biologics because they are derived from living sources. It is only recently however that biologics that are specifically targeted toward psoriasis and arthritis have begun to emerge as potentially promising new treatment options. Different from the traditional systemic drugs that impact the entire immune system, biologics target specific parts of the immune system. The biologics used to treat psoriatic diseases act by blocking the action of a specific type of immune cell called a T cell, or by blocking proteins in the immune system, such as tumor necrosis factor-alpha (TNF-alpha) or interleukins 12 and 23. These cells and proteins all play a major role in developing psoriasis and psoriatic arthritis. The biologics are taken by injection or by IV infusion. Amevive is administered by intramuscular injection in a medical office. Enbrel, Humira and Simponi are injected in the legs, abdomen or arms, typically by the individual with psoriasis or a family member. Stelara is administered as a subcutaneous injection by a health care provider. Remicade is given through IV infusion in a doctor’s office or infusion center. Biologics are prescribed for individuals with moderate to severe cases of plaque psoriasis and psoriatic arthritis. They are a viable option for those who have not responded to or have experienced harmful side effects from other treatments. The TNF blockers have been shown to reduce the progression of joint damage in psoriatic arthritis.

Immune system cells, T cells and B cells, monitor the body for bacteria, viruses and other infections. When these immune cells come in contact with a foreign substance, they release chemical signals, such as tumor necrosis factor (TNF) and interleukins, that trigger inflammation. In people with psoriasis, the immune system mistakenly activates T cells that travel to the skin and produce excessive amounts of inflammation, resulting in rapid skin cell growth and psoriatic lesions. Biologics inhibit the immune system, reducing inflammation and inhibiting the excessive skin cell growth. Different biologic medications target different portions of the immune system. Some biologics reduce T cell activity, while others reduce the production of tumor necrosis factor (TNF) or interleukins. A doctor may recommend the use of a biologic for people whose psoriasis is moderate to severe, cannot be controlled effectively with other psoriasis treatments, or cannot tolerate other psoriasis medications because of side effects. Talking with a dermatologist who has experience with the biologics is the best way to decide if a biologic is an appropriate treatment option. Before speaking with a dermatologist, it helps to know a bit about the biologics. Biologic agents may be used alone, but are often given with other DMARDs, disease-modifying antirheumatic drugs, (e.g., methotrexate, leflunomide, hydroxychloroquine, sulfasalazine), to increase the benefit and decrease side effects. When patients start biologic agents, they usually also stay on their current dose of nonsteroidal anti-inflammatory (NSAID) and/or corticosteroid (i.e., prednisone) medicines. Some of the TNF inhibitors have been approved for use in juvenile arthritis, Crohn’s colitis, psoriatic arthritis, ankylosing spondylitis and psoriasis.

Biologics are different from other medications for psoriasis and psoriatic arthritis because they are designed to block both diseases early in their development - in the immune system.

Psoriasis and psoriatic arthritis begin in the immune system when certain immune system cells are triggered and become overactive. These overactive cells set off a series of events in the body, eventually causing psoriasis to develop on the skin and arthritis symptoms to develop in the joints. Biologics work for psoriasis and psoriatic arthritis by blocking the action of certain immune cells that play a role in the diseases. In some cases biologics reduce the number of these cells in the skin and blood . In other cases they block the activation of the immune cells or block the psoriasis causing chemicals released by them.

Almost all treatments that work for psoriasis and psoriatic arthritis impact or target the immune system in some way. This is true for Ultra Violet treatment and systemic medications such as methotrexate and cyclosporin. The difference is that their impact on the immune system and body is broad, including the risk of potentially serious side effects on other organs. Biologics are more targeted and should spare the body these broad side effects and they have the potential to be a safer option. Because of the effect these treatments have on the immune system, patients on systemic and biologic treatments may require an annual flu shot.

Biologics are a class of drugs that have been used since 1998 and have been studied for almost 10 years. Overall, they have been given to more than 600,000 people worldwide. A “biologic” drug copies the effects of substances naturally made by your body's immune system. Biologic agents are genetically engineered drugs – meaning that human genes that normally help with the production of these natural human immune proteins (i.e., an antibody to TNF) are used in non-human cell cultures to make large amounts of a biologic drug. These drugs are given to decrease inflammation by interfering with biologic substances that cause or worsen inflammation. These new biologic agents can specifically affect some of the abnormalities of the immune system that lead to the joint inflammation and other abnormalities seen in rheumatoid arthritis and so help treat its symptoms. In the last decade, there have been great advances in treating rheumatoid arthritis, especially for patients whose arthritis does not respond to traditional DMARDs, with the most important advance being the development of the biologics. There are a number of biologics approved to treat rheumatoid arthritis. Biologics are genetically engineered proteins derived from human genes so they are designed to inhibit specific components of the immune system that play leading roles in fueling inflammation, which is a key feature of rheumatoid arthritis. Biologics are used to treat moderate to severe rheumatoid arthritis that has not responded adequately to other treatments. They differ significantly from traditional drugs used to treat rheumatoid arthritis in that they target specific components of the immune system instead of broadly affecting many areas of the immune system. Other biologics are being studied to treat rheumatoid arthritis as well as other conditions. Biologics may be used alone but are commonly given along with other rheumatoid arthritis medications. Biologics have been shown to help slow progression of rheumatoid arthritis when all other treatments have failed to do so. Aggressive rheumatoid arthritis treatment is known to help prevent long-term disability from RA. Biologic agents have been approved by the FDA to treat moderate to severe rheumatoid arthritis that has not responded to an adequate trial of one or more of the traditional DMARDs. Because of their expense and side effects, most people with mild to moderate rheumatoid arthritis are treated with methotrexate before a biologic agent is used unless they are unable to take methotrexate because of side effects or other conditions. Currently available biologic agents act as inhibitors of the cytokines IL-1 or TNF. Cytokines are messenger molecules that the body's cells make to act to excite other immune system cells. Interleukin-1 (IL-1) and tumor necrosis factor (TNF) are made in large amounts in rheumatoid arthritis and other forms of inflammation. In these diseases, TNF or IL-1 act to increase inflammation, like gasoline on a fire. However, in rheumatoid arthritis TNF or IL-1 (the gasoline) acts by exciting the inflamed joint (the fire). Hence, these cytokines actually worsen inflammation and joint damage. Biologic agents were made to specifically attach to TNF or IL-1 and inhibit or inactivate them.

For rheumatoid arthritis, the starting doses have been decided due to large clinical trials. Biologic agents must be given by an injection under the skin--etanercept (brand name Enbrel), adalimumab (brand name Humira) and anakinra (brand name Kineret)--or by intravenous (IV) infusion--infliximab (Remicade). These medications must be stored in a refrigerator and warmed to room temperature before use. Patient education information and videos are available for the self injectable medicines. A nurse or doctor can teach you about the medicine and how to give the injections. It is helpful to bring a spouse or friend with you to learn how to do the injections. You can inject the medicine in the front of your thighs or abdomen. Injection sites should be rotated so that the same site is not used repeatedly. Most patients who are afraid to inject themselves are usually able to give these injections repeatedly with little or no discomfort. Remicade infusions are either done through an IV line in the doctor’s office or in specialized infusion centers. These treatments usually take 2-3 hours, during which time the patient can rest, read, watch TV or do office work without discomfort.

Biologic agents usually work quickly to relieve the symptoms and swelling associated with rheumatoid arthritis. Studies show that most patients will improve within 4-6 weeks of treatment, but most patients receiving Enbrel, Humira, or Remicade will notice marked improvement after the first or second injection/infusion.

Key features of the biologic drugs: taken by injection ot infusion ( either in an infusion center or at home depending on the specific medication); treatment schedule and frequency vary; will improve psoriasis and psoriatic arthritis for some people but not all; short term side effects are generally minor although an allergic reaction to the injection can occur; long term safety is still being evaluated; they are expensive; they must be taken continuously to maintain improvement.

The most common side effect seen with biologics is pain and rash at the injection site in less than 30% of patients. As with any drugs that suppress the immune system, biologic therapy poses an increased risk of infections and other diseases. Patients taking biologics should tell their doctor immediately if they develop a persistent fever or unexplained symptoms. Vaccinations that prevent infections should be considered prior to administration of biologics. Patients should not receive live vaccines while taking biologic medications. Biologics may also cause some chronic diseases that are dormant (such as tuberculosis) to flare, and they are not recommended for people with conditions such as multiple sclerosis and congestive heart failure. All patients should be skin tested for tuberculosis before even starting biologics. Since biologic therapy is in its early stages of use, some of the long-term effects of using these medications aren't known, and your doctor should regularly monitor your health while using them. Biologics are also more expensive than traditional treatments. However, the evidence suggests that they work well and pose fewer risks than other systemic therapies. One disadvantage to current biologic medications is that they must be given either by injection or by intravenous infusion. However, researchers are currently working on developing a biologic that can be taken orally.

Although animal studies of biologics have shown no effect on fertility or effects on the fetus, these studies cannot always predict the effects in humans. Pregnant women should receive these drugs only if they are clearly needed because the effects on the developing child are still unknown. Biologics are commonly discontinued before surgery until wounds have healed and the risk of infection has passed. As a general rule, different biologic therapies should not be taken at the same time. With any treatment, it is important to meet with your doctor regularly to monitor your progress and to evaluate side effects. Your doctor may periodically order blood tests or other tests to determine the effectiveness of your treatment and detect side effects that cannot necessarily be seen on the outside. Biologic drugs have affected the treatment of rheumatoid arthritis tremendously. As mentioned above, newer biologics are being developed that either provide alternative methods or frequency of administration or different targets of action. The most common side effects seen with the injectable medicines include skin reactions, which are called “injection site reactions.” Skin reactions to injection occur in less than 30% of patients, and these patients usually complain of localized rash, burning, or itching at the site of injection. With Enbrel and Humira these skin reactions may last up to a week. Kineret injection skin reactions may last for 10-14 days before fading away without scar. The most significant side effect of these medications is an increase the risk of all types of infections, including tuberculosis (TB). Before starting an anti-TNF medication a TB skin test is usually done. Treatment with these agents should be stopped while you have an active infection and are taking an antibiotic or if you have a high fever. Remicade can cause allergic reactions. There are also rare neurologic complications from the anti-TNF medications, and people with multiple sclerosis should not use them. People with significant congestive heart failure should not take the anti-TNF agents.

Do not take biologics if: your immune system is significantly compromised; you have an active infection. Screening for tuberculosis (TB) or other infectious diseases is required before starting treatment with Enbrel, Humira, Remicade, Simponi and Stelara.

People considering taking a biologic drug should talk with their doctor about the short- and long-term side effects and risks. It is important to weigh the risks verses the benefits of using the drugs. Biologics can increase the risk of infection. Individuals who develop any sign of an infection such as a fever, cough or flu-like symptoms or have any cuts or open sores should contact their doctor right away. The impact of biologics on a developing fetuses or nursing infants is not known. Biologics should only be prescribed to pregnant or nursing women if there is a clear medical need.

Common side effects for biologics include: respiratory infections; flu-like symptoms; injection site reactions. These side effects are generally mild and in most cases do not cause individuals to stop taking the medication.

Rare side effects for biologics include: serious nervous system disorders, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes have: blood disorders; certain types of cancer. Call your doctor if you are experiencing any side effects with biologic drugs.

All of the biologics currently on the market can be used with other treatments such as phototherapy or topicals. Data suggests that phototherapy in combination with Amevive may improve the outcome. Using phototherapy along with Remicade may increase your risk of skin cancer. Enbrel, Humira, and Remicade are safe and effective when taken with methotrexate. Talk to your doctor about whether using any other treatments with a biologic is right for you.

Most medications are created by combining chemicals. In contrast biologics are made from living human or animal proteins. The medications made from these proteins are specifically designed to act in certain ways in the body to correct something going wrong that leads to disease. Currently, all biologics used for the treatment of psoriasis must be injected or given by IV. They currently cannot be taken by mouth because the protein molecules are too large to be absorbed by the intestine and are too fragile for the stomach acid.

Biologics work by targeting the underlying cause of psoriasis — excessive skin cell growth because of an overactive immune system. Although they can often provide long periods of clear skin, they are not a cure for psoriasis and ongoing treatment is necessary.

Biologic agents represent a new kind of treatment for patients with inflammatory arthritis, like rheumatoid arthritis. They are expensive, generally effective, well tolerated and quite safe in most patients, but do increase the risk of infections. Their safety can be enhanced by proper screening procedures (TB skin test) and periodic monitoring of blood tests by your doctor. Patients should request and read educational materials from the doctor who prescribes these medicines. Watching instructional videos and having another person give you these injections can minimize the fear of injection yourself.


Amevive (alefacept) works by blocking the activation of a type of white blood cell called a T cell, which results in a reduction in skin inflammation. T cells normally help the body rid itself of foreign invaders such as viruses, fungi and bacteria. However, in psoriasis the T cell mistakenly attacks the skin; this sets off a chain or "cascade" of events that causes psoriasis lesions to form and become inflamed. Amevive blocks the action of T cells to reduce inflammation and inhibit skin cell overgrowth. This leads to a clearing of lesions and other psoriasis symptoms. The medication is given by intramuscular (IM) injection, usually in the doctor's office. A typical course with Amevive is one intramuscular injection per week for twelve weeks, followed by additional 12-week treatment cycles if necessary. Treatment cycles must be separated by 12 week periods off treatment. Blood tests are performed regularly to monitor T-cell counts. Each doctor may tailor the use of Amevive according to how well someone responds to treatment and tolerates the medication.

Stelara (ustekinumab) works by selectively targeting the cytokines interleukin-12 (IL12) and interleukin 23 (IL23). Interleukins-12/23 are also cytokines which are thought to promote the inflammation associated with psoriasis. Stelara was FDA approved for the treatment of psoriasis in 2009. It works by blocking interleukin-12 and interleukin-23, immune-system proteins linked to inflammation and the rapid skin cell growth underlying psoriasis. Stelara is usually given by injection twice in the first month, and then every 12 weeks. This results in approximately 5 treatments per year. The relatively low number of injections and long duration between treatments are considered to be some of the benefits of Stelara. Although other biologic medications may be self-injected at home, Stelara should be administered by a medical professional. Patients should be screened for latent tuberculosis (TB) before taking Stelara and blood tests may be performed to monitor the immune system. Each doctor may tailor the use of Stelara according to how well someone responds to treatment and tolerates the medication.

Actemra, given by monthly hour-long infusions, is the first IL-6 inhibitor for rheumatoid arthritis. It can be used alone or in combination with disease-modifying drugs such as methotrexate. IL-6, or interleukin-6, is a chemical messenger of the immune system. The FDA has approved Actemra for moderate to severe rheumatoid arthritis in patients who have not responded to one or more TNF inhibitors. TNF inhibitors include Cimzia, Enbrel, Humira, Remicade, and Simponi.The most common adverse effects include upper respiratory tract infection, inflammation of the nose or throat, headache, high blood pressure, and elevated liver enzyme level.

Cimzia works by blocking the action of a substance in your body called tumor necrosis factor (TNF). This reduces inflammation and the pain and stiffness from rheumatoid arthritis and can improve fatigue within a couple of weeks. Cimzia is an injection. Through the use of prefilled syringes, you can give it to yourself once you are taught to do so by a doctor or nurse. After the initial doses, Cimzia can be taken every 2 to 4 weeks, depending on the dose your doctor feels is right for you. In addition to pain at the injection site, the most common side effects seen with Cimzia are upper respiratory infections, such as a cold, rash, and urinary tract infections.

Enbrel reduces joint inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation called tumor necrosis factor (TNF). Enbrel is also an injection. Enbrel is given by self-injection under the skin once or twice a week. Patients can learn to give their own injections or receive them from a family member or caregiver who has had proper instruction. Preloaded syringes are available as self-injectable “click-pens.”

In addition to pain at the injection site, Enbrel's most common side effects are infection, including upper respiratory infections like a cold, headache, and runny nose. Enbrel is FDA approved for the treatment of psorias, psoriatic arthritis and rheumatoid arthritis. It works by inhibiting the activity of TNF (tumor necrosis factor), the chemical “messenger” that triggers inflammation. Enbrel is given as a subcutaneous injection (under the skin) similar to the insulin used by people with diabetes. People can learn to administer subcutaneous injections themselves at home. A typical treatment course with Enbrel is two subcutaneous injections per week for three months. A weekly maintenance dose may be recommended. Symptoms often return within a month or longer after stopping the medication.

Enbrel may be used alone or in combination with other psoriasis medications, including methothrexate. Blood tests may be performed to monitor the immune system during therapy with Enbrel. Each doctor may tailor the use of Enbrel according to how well someone responds to treatment and tolerates the medication.

Humira reduces joint inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation called tumor necrosis factor (TNF). Humira is an injection. It is given by self-injection under the skin once every two weeks. Patients can learn to give their own injections or receive them from a family member or caregiver who has had proper instruction. Preloaded syringes are available as self-injectable “click-pens.” In addition to pain at the injection site, the most common side effects with Humira are upper respiratory infection, headache, and rash. Humira has been prescribed for rheumatoid and psoriatic arthritis and was FDA-approved for the treatment of psoriasis in 2008. Like Enbrel, Humira helps clear psoriasis by interrupting the activity of TNF (tumor necrosis factor).

Humira is given as a subcutaneous injection (under the skin) similar to the insulin used by people with diabetes. A typical treatment course with Humira is one subcutaneous injection every two weeks. These injections are given on an ongoing basis to relieve symptoms and stave off future outbreaks. Humira may be used alone or in combination with methotrexate or phototherapy. Patients should be screened for latent tuberculosis (TB) before taking Humira. Blood tests may be performed to monitor the immune system. Each doctor may tailor the use of Humira according to how well someone responds to treatment and tolerates the medication.

Kineret is a protein that reduces joint inflammation by blocking the action of the chemical messenger interleukin-1. The drug is administered as one injection daily (can be self-injected or given by another individual). In addition to pain at the injection site, the most common effects with Kineret are upper respiratory infection, headache, and nausea.

Orencia is used to treat moderate to severe rheumatoid arthritis. Orencia is a protein that blocks signals that are needed to activate T-cells of the immune system. Activated T-cells play an important role in the development of rheumatoid arthritis. Orencia is approved to reduce the symptoms and stop the progression of RA in patients not helped by methotrexate or other biologics. It can be taken alone or with other medications except biologics. Orencia is given by intravenous infusion monthly. Side effects include serious allergic infusion reactions. Symptoms of infusion reactions include flu-like illness, fever, chills, nausea, and headache. Caution should be used in prescribing Orencia for patients with chronic obstructive pulmonary disease (COPD). Orencia's most common side effects are headache, runny nose, and dizziness.

Like Enbrel and Humira, Remicade reduces inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation, tumor necrosis factor (TNF).

Remicade is given by intravenous infusion in the doctor's office, an infusion center, or hospital. Each infusion takes about two hours. The intravenous treatments are given three times during the first six weeks of therapy, then every eight weeks thereafter. Remicade is often given with methotrexate for treating rheumatoid arthritis.

Because it is administered intravenously, Remicade has the potential to cause an allergic infusion reaction, and patients are therefore monitored during infusions.

The most common side effects of Remicade are upper respiratory infection, headache, and nausea. First used as a treatment for psoriatic and rheumatoid arthritis, Remicade is also FDA-approved for the treatment of moderate to severe psoriasis. Like other biologics used for the treatment of psoriasis, Remicade works by blocking the action of TNF. Remicade is administered via IV (intravenous) infusion in a doctor's office or infusion center. It is commonly administered three times in six weeks, and then once every eight weeks. Remicade may be used alone or in combination with methotrexate. Patients should be screened for latent tuberculosis (TB) before taking Remicade and regular blood tests may be performed. Each doctor may tailor the use of Remicade according to how well someone responds to treatment and tolerates the medication.

Rituxan is approved for patients with moderate-to-severe rheumatoid arthritis who have not improved with TNF-blockers, such as Enbrel, Humira, or Remicade. Rituxan is an antibody protein that works by targeting and reducing the number of specialized white blood cells, called B cells, in the blood. Rituxan is given as two intravenous infusions -- separated two weeks apart -- in combination with methotrexate. Repeat courses of Rituxan are considered after four to eight months. Because it is administered intravenously, Rituxan has the potential to cause an allergic infusion reaction, and patients are therefore monitored during infusions. Symptoms of infusion reactions include flu-like illness, fever, chills, nausea, and headache. Rituxan's most common side effects are high blood pressure, nausea, and upper respiratory infection.

Like Remicade, Enbrel, and Humira, Simponi blocks the effects of TNF. It blocks the effects of a chemical that triggers inflammation. Simponi should be used in combination with oral methotrexate, and it’s intended for adults with moderate to severe symptoms. Simponi is taken once a month by injection. After a health care professional shows you how to do it, you can give yourself the injection at home with either a prefilled syringe or an autoinjector.

The most common side effects include upper respiratory infections, runny nose, and abnormal liver tests.

Raptiva (efalizumab), a biologic that blocks the activation of T-cells, was approved in 2003 by the FDA. It was voluntarily taken off the market in 2009 due to safety concerns. For more information about this matter, visit the Food and Drug Administration's website.

Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab) and Simponi (golimumab) are drugs that block TNF-alpha. TNF-alpha is an immune system mediator called a cytokine that is a key mediator of inflammation. In psoriasis and psoriatic arthritis, there is excess production of TNF-alpha in the skin or joints that leads to the rapid growth of skin cells and/or damage to joint tissue. Blocking the TNF-alpha helps to stop the inflammatory cycle of psoriatic diseases.

Biologics prescribed for the treatment are not always covered by health insurance. It is important to check with your health insurance carrier to see if and how biologics are covered. Some insurance companies offer partial coverage, require prior authorization, or work only with certain pharmacies through mail-order programs. Also, some biologics manufacturers provide information on how to work with insurance companies and offer reduced-cost medication for qualifying patients.

The biologic medications have been investigated by the National Institute for Health and Clinical Evidence (NICE) who have issued guidelines on when they can be prescribed. NICE have issued guidelines for five of the biologics used to treat psoriasis, Etanercept (Enbrel), Efalizumab (Raptiva), Infliximab (Remicade) and Adalimumab (Humira) and Ustekinumab (Stelara). However, since issuing the guidance, Raptiva has had its marketing authorisation suspended and so will not be prescribed.

NICE recommends that Enbrel, Humira and Stelara be prescribed for people with severe psoriasis who have not responded to other systemic treatments such as phototherapy, Methotrexate, Cyclosporin and Acitretin, or if these treatments cause a reaction--which means the person should not take them--or if the person has another condition or medication--which means that they should not take the other systemic treatments. If the psoriasis doesn't show a measurable change for the better after 12 weeks of therapy (in the case of Enbrel and Humira) NICE recommends that the treatment be stopped. If the psoriasis doesn't show any change (in the case of Stelara) after 16 weeks of starting treatment, NICE recommends that the treatment be stopped. Remicade can be offered for the treatment of very severe plaque psoriasis if the psoriasis has not responded to other systemic treatments such as phototherapy, Methotrexate or Cyclosporin. If the psoriasis has not shown any measurable change after 10 weeks then treatment should be stopped.

NICE have issued guidelines for three of the biologics used to treat severe Psoriatic Arthritis--Enbrel, Remicade and Humira. NICE recommends that Enbrel, Remicade and Humira be prescribed for people with severe psoriatic arthritis when the person has three or more tender joints and three or more swollen joints and at least two other DMARDs given on their own, or together, have not worked. If the psoriatic arthritis has not shown any measured response at 12 weeks, NICE recommends that the treatment be stopped.

If you have any questions, please tune into my Blog Talk Radio Show. Call in or sign in to the chat room with your questions live! Part 2 is live May 26th at 11 P.M. ET! Call in # is (714) 459-3943, press 1 if you want to talk on air! I would love to hear from you!!!

MediGuard.Org has info on a safety alert regarding biologics. Please read.

I Am A Superhero!

2011-04-19T22:05:00.002-04:00

I am a Superhero!

April 18th, 2011

This was a winning entry in How to Cope with Pain Blog “Write Something to Share” contest and is written by Dana, who writes at I Already Gave My Right Arm To Be Ambidextrous!

After coping with pain for many years, it becomes a way of life. I’m truly not being negative. I’m just stating a fact. If you live with chronic pain, you understand what I’m talking about completely. You learn to give yourself more time, to plan ahead, to always expect things could change at the last minute, to never put too much weight on your plans, and above all to give yourself a lot of slack. You have to learn to not be too hard on yourself. Ultimately, a person with chronic pain wants more than anything to be normal or to appear as normal as possible. I know that I will never be normal again, and I accept it; but I can still dream…right?

I cope with my pain better than a lot of others I know, and I cope much better than I did when the pain first began. There is a learning curve. One of the most important things to know about coping with chronic pain that I have learned is that I can’t blame myself for what seems to follow when the pain days are bad, or worse than usual. There is no reason to put more stress upon myself by putting blame upon me for something that I didn’t cause. Now there are times when I overdo it, and I definitely can point the finger at myself for the increased pain that will cause. But overall, with chronic pain, it is going to be there every day, and it will increase and decrease from day to day at no fault of my own.

I am the type of person who has always been extremely hard on me in order to challenge myself and accomplish goals in my life. Yes, I think that is important most of the time, but not when it comes to chronic pain. I have learned that chronic pain is almost like a characteristic that makes me who I am, that can’t really be changed because it is a part of me. For instance, I am short—5 feet 1 ¾ inches tall. I cannot make myself taller than that. I can wear heels (although I don’t really suggest I do that with the pain that I experience in my feet, ankles, knees , hips and lower back), but when I take my pumps off, I will always be 5 feet 1 ¾ inches tall. If I wanted to be shorter, well first of all, I would have to ask “why?” Secondly, unless I am sitting down in a chair, I will always be the same height without heels. So, with pain, I will always have it. I can better cope with it by taking pain medications, practicing relaxation techniques, exercising, resting throughout the day, proper stretching, proper shoes, etc. But the pain will always be there, and it will never completely disappear. I will have bad pain days, and I will have better pain days, but I will never have pain free days. I accept it. It is a part of my life.

I can’t really say you get used to it, but I have gotten stronger as a person because of the pain. Not necessarily physically, but mentally, psychologically, emotionally, and spiritually I am a superhero. That is how strong I am! Because of the ability to cope so well with day to day chronic pain, and not allowing it to run my life, I am able to use the coping skills that I developed to help me cope in other ways in my life. It is amazing how much more life I have now that I have transferred my pain coping skills into the rest of my life…Ok, so you want examples? Well, I can give you one HUGE example that has been the biggest change in my life, which hasn’t had a HUGE effect on my pain though because I have such great coping skills.

This past December, my husband and I adopted a baby boy. He is our first child. We have been married for nearly 11 years now, have tried the adoption route for 6 years, and finally we were blessed with a beautiful, healthy baby boy. We had to fly to another state to pick him up, and we got there 6 days before he was born (he was overdue). We were able to pick him up and take him with us from the hospital when he was just 4 days old. So we were staying in a hotel. It was a nice hotel for extended stays. Luckily, from the very first night with us, he slept through the night 5 to 6 hours at a time (now 8 hours at a time at 2 ½ months old). At this point, my body was faced with probably one of the biggest stresses possible—feedings every 2 hours, diaper changes, carrying the baby constantly, bouncing the baby, holding the bottle for 30 minutes at a time in the same position, burping the baby, giving the baby a bath, putting on a diaper, etc., etc., etc. All of these things I was able to do, I just have to do them in a different way than other mommies do them. It also may take me a little bit longer. I have learned to love the slings to carry him close to me. I have also learned to love pillows to lay him on when I feed him and prop him up, and to prop my own arms up. I have learned easier ways to make up his bottles and to change his diapers and even to give him a bath. I may do things a little differently, but I get everything done and have a very happy and healthy baby boy who is thriving!

I have learned that just as I must be patient with my own body because of the pain, I must be just as patient with my baby boy who will cry a lot. I may not always know what he needs, or it may take a while to figure it out, so I must use that patience that I know so well with my own body. I have learned to take care of the tasks that have to get done and put the others off until I am able to do them. Those tasks will keep. Anything that the baby needs is priority—making bottles, changing diapers, soothing his tears, playing with him, bathing him, etc. Dusting, vacuuming, and cleaning the kitchen and bath are among the tasks that are at the very bottom of the list. Taking care of me is very important though too. I can’t put me off because if I flare, who will be there for the baby? That is constantly running through my mind. I do my best to make sure I get the rest I need, to eat healthy, to take my meds, to exercise when I can, etc. I have found that by taking care of myself, by making sure that the baby is taken care of, and by putting off the less important tasks, and letting some of my chores keep until I can get to them has kept me from flaring these past 2 ½ months. I have not flared once since we brought the baby to the hotel out of town.

I will tell you that we had some major unexpected events occur during the adoption process. The birth family found out that I had a joint disease and wanted to back out of the adoption agreement with us. I was devastated! For the first time in a long time, I allowed my chronic pain conditions to define me! That was so unlike me! I stood back, took a good hard look at my life and why we were adopting, and realized that this was what we had always wanted—to raise a family. It was a promise we made to each other before God in our vows. We were going to make this happen! My rheumatologist spoke to the birth family about how I was coping so well and was very capable of raising a child. He had no doubts. The family decided to go with their previous decision and place the baby with us! We were excited and nervous all at once, but we felt we were ready at this point in our lives.

Then while out of town, staying in the hotel, we had some problems with the paperwork and fingerprinting, so we had to stay much longer than anticipated. We ended up being out of town from December 9^th through the first week of January. We had the baby in a hotel room with us from the 18^th of December until we left in January! We had to do our fingerprints in that state, and I had to redo mine 3 times while I was there because they have a hard time rolling my fingers with the ink because of the arthritis in them. So that was more stress. I was unable to exercise at the gym there, so I was unable to release the stress that way, which really helps me to cope better. Our luggage got lost at the airport! The window in our hotel room wouldn’t close, and it was winter—snow and freezing temperatures! We asked for another room, and the desk worker said that was the last available room we were in. She said to use all of our weight and push down on the window. Well, actually, that did work!

So with all the stress of a new baby, I’m making it because of my fabulous coping skills with having chronic pain. I also have to say that I have never been happier. It was worth the wait. I love him with all my heart! In a way, I can thank my chronic pain for helping me to be a better mom. If it weren’t for my chronic pain, my coping skills wouldn’t be this perfected. I wouldn’t be able to handle the daily stresses of motherhood and the unexpected stresses that life throws at you as well. So, thank you, chronic pain!

Help Me If You Can...I Do Appreciate You Being Round...Even If I Don't Always Act Like It!

2011-04-03T01:51:00.000-04:00

For this blog carnival, it's our take on help. How do we help ourselves, get help from others, or even recognize our need of a little helping hand? How do we feel about asking for help or getting some when we haven’t asked for any? Let's explore this topic.

Oh wow! Where do I begin with this topic? Help, I need somebody! This is so difficult for me. I am so independent. I am such an advocate for people with chronic pain and chronic illness that I lose sight of what I really need~HELP!

The difficult part of this topic is that no matter how independent, self-assured, and secure we are, there is always a time in our lives when we feel down, fall down, have a door close in our face, and go through a life-changing event. For me, pain is constant and daily, so I have learned to live with it as a part of my life which is good and bad. It's good for me because I have learned to deal with life as a person with chronic pain, meaning that I know how to make plans and choices that fit my lifestyle. It's bad because those plans and choices will likely change in an instant. When those plans and choices have to change due to extreme pain days, weeks or months, it would be smart to ask for help. However, the stubborn side of me will almost never ask for help. It's not that I don't want it or need it. It's not that I think people like family and friends should be able to read my mind and automatically know when my pain is so bad that I have to start canceling things. I always feel like it makes me weak. Silly isn't it. The reason I think this is a silly thing is because here I am living with several pain conditions daily, which makes any person that does this strong, but I can't find the courage inside me to ask for even a little help.

This week, I was so stressed out. I went off my fibromyalgia medication. The pain was severe. I was so tired and fatigued but couldn't sleep. We have a 3 1/2 month old. Need I say more? Actually, I will give you a little more info. My hubby, baby and myself all live 9 1/2 hours away from any family member. We mostly hang out here with the hubby's friends from work, which have in turn become my friends, and I have made a few friends of my own as well. I feel bad asking people from his work for help because I don't know them that well. I also hate asking friends for help because I would rather help them. So that leaves the hubby. I guess I got so stressed out from not asking anyone, including my own spouse, for help that I lost it. I told my hubby that I couldn't do any of it. It was too hard. I was behind with getting bottles made, doing laundry, running the dishwasher, going to the store, sending birthday cards out, making meals, and putting stuff away. I couldn't or wouldn't even admit that it's been months since I cleaned, dusted or vacuumed the house! I was wearing the same clothes for the third day in a row and hadn't showered in I don't know when. I needed help!

He literally said to me that he couldn't believe how helpless I had become! I was furious! I was not helpless, and yet I was because I wasn't asking for help! I don't know if I ever looked at the word that way before, but at that moment I did. I was helpless. I was not taking any one's help or asking for any one's help. I was helpless! He told me that he wasn't a mind-reader. He couldn't tell what I needed help with unless I asked for it. Ah! That is the secret behind asking for help, you see. Help doesn't just come to you. You must get the courage up and ask for it. He told me that he just assumed that I had everything under control and didn't need any help. He said that on the outside looking in, I appear to have it all together. Hmmm...interesting, to say the least. It's kind of like our pain conditions. We look just fine from the outside until we let people know!

I realized this day that I had it out with my hubby, after he called me helpless, and then I felt hopeless for a while until I really got my senses together. To ask for help will only help keep us independent. Here is where I'm going with this...If we don't ask for help while our world is crumbling around us, and we lose all sense of reality until someone has to literally take over for us, that is not the answer. If we see that the foundation is beginning to crumble, we should ask for someone to please help us to strengthen it again so we do not fall apart and lose everything that we ever were or ever worked to be. It's kind of like when you press the refresh button on your computer!

"I'm Thankful to See The Next March 29th!"

2011-03-30T00:36:00.001-04:00

This is in Chronic Babe's Blog Carnival # 26, "I am thankful for..." Last year on this day, March 29th, 2010, I was at Piedmont Hospital in Atlanta, GA on my first night of recovery following right shoulder replacement surgery. I am writing this post on March 29th, 2011, thankful that I have made it a full year with a wonderful new shoulder! I wouldn't be here today if it weren't for such a wonderful orthopaedic surgeon. He is the best in town, and that is why I picked him. My shoulder had collapsed in Oct. of 2010, and I waited until the end of March that year for that particular doctor to replace it. I could have had another orthopaedic surgeon from another group do it sooner, but I chose him! Thank you, Dr. D! I also would like to thank my wonderful friends from the Young Professionals Arthritis Group. They had brought me food as I recovered. Thank you dear friends, and you know who you are, Susan, Ang, Carlene, Kelbi and Michelle for being wonderful company to talk with and for taking me out when I was stuck at home and couldn't drive yet.

There is so much to be thankful for in this past year. With this shoulder replacement, I was able to get back into an exercise routine that helped me to get my strength back. It helped me to get a routine. Not even 7 months after my shoulder replacement, we were matched with a birth mother! What a wonderful gift to get well for! Thank you to that family for choosing my husband and I to raise Michael. I don't think I have ever been more thankful for anything in my life. With my health on the up rise, I could look forward to being a mommy for the first time in my life!

Although we had our rough times preparing for Michael to come home to us--meaning that the birth family almost changed their minds when they found out I had arthritis. They almost decided against my being Michael's mommy for fear that I couldn't do it because of my joint problems. So thank God for my Dr. W! He agreed to speak with the birth family to let them know that I would be a good mom, and that my arthritis would not prevent me from being able to raise Michael. So thank you, thank you, thank you, Dr. W!!!! I will never forget what you did to change our lives from husband and wife to daddy and mommy!

Thank you so much for all of the support that I have received online. Who would have guessed that people that I never met and probably will never meet in person would have given me so much encouragement and also have made me realize that blogging isn't just for me, it helps others. I am so thankful for all of you out there in cyberworld that have read my blog and have commented and given responses and replies. You have helped me to use my blogging and now Blog Talk Radio to help others in their journey to help themselves by helping others just by telling their story, and by helping themselves by the sheer joy of knowing that you helped even just one person with your story! What a wonderful feeling!

I am thankful that I decided to blog about the pain of waiting to have my shoulder replacement because had I not done that, who knows where I would be today~one year and a half since I began my blog! So thank you all my followers, friends, doctors, cyberfriends, facebook friends, chronic babes, and family that has been there for me and I for you! Remember, if it weren't for you, there would be no blog, and if it weren't for me, this blog would suck! So my story of my struggle has brought humor, love, pain, sadness, and most of all a great read for you all! Thank you all for listening and being there! Hang in there because ya never know when the next joint will need replacing!!!! Blessings and healing to all of you out there!

A Note to Us (Body, Mind and Soul):

2011-03-29T22:02:00.000-04:00

A Note to Us (Body, Mind and Soul):

I thought that we had finally reached an understanding. I know that you will sometimes have days when your muscles will tighten up so badly that you can't move them. You will still wake up every single morning with stiff joints that will get better as the day progresses. I know that there are still some unknowns like when the other hip and shoulder will collapse and when both knees decide to totally give up and collapse all together. But what is up with you right now?

Why are you not communicating with me again? We were doing so well for a while! We were able to work together to eat well, exercise, and enjoy life. Now, you are sending out these strange new symptoms from the Body to the Mind and it is really irritating to the Soul! There are hot flashes, sweats, an increase in blood pressure, tachycardia, a decrease in sleep but an increase in sleepiness and fatigue. The Mind gets these symptoms from the Body and automatically thinks it's something hormonal! Is it something totally new? Is it menopause or my thyroid? Have we put on weight? Oh my, we have gained 25 pounds in 6 months!!! OK, why has the body put on so much weight? The Mind is obsessed over the weight gain! It is becoming too much for the Soul, for our spirit! It's upsetting us and making us depressed! 25 pounds isn't good for our joints, ya know. We are trying to conserve what we have here!

OK, the doctor said it isn't menopause or the thyroid. Let's really think about it...What is different? 7 months ago, we started a new fibro med, Savella. We looked up the side effects and to our amazement, they are all of our problems except weight gain. Now there are people that have said they gained weight on it. It is an antidepressant, and they do cause weight gain in some people. These particular side effects from Savella that we're experiencing are actually adverse reactions!!! Don't stress, don't stress, don't stress! We will wean ourselves off it. That is the responsible and right way to do it. So we begin...

What are we doing? We are having withdrawal symptoms coming off Savella. We wouldn't be having these symptoms if we tapered the dose, but instead we stopped taking it cold turkey. We did think about it for a good 15 minutes. We went through the pros and cons. We decided to just stop it because we became afraid of all the cardiac symptoms that we were having. We wanted them to stop. We didn't want to have anymore harm done to our heart than what may have already been done! So we just stopped it. To rationalize what we did, we thought about if we had been allergic to the medication, we would have just stopped it; wouldn't we? Now tomorrow we see the pain doctor. What will he tell us? Oh dear!

We just want to feel better. We want to be able to go to belly dancing class again next week and to attend aqua aerobics without feeling dizzy. We were feeling so good. The reason we went on Savella is because the migraines came back so we went back on the migraine medication. By doing that, we went off the medication for fibro and went on the new medication for fibro, Savella...and here we are today.

We are a mom now. We have a 3 1/2 month old baby boy. We must all work together and be on the same page to be strong enough to take care of a new baby. He is getting so big, and we must be healthy to hold him and carry him around the house.

We are a team. Remember what it was like just 6 months ago when the team was working so well together. We were the right weight. Our joints did not ache every time we bent over and picked up Mick. Our fingers did not stiffen every time we tried to put his diaper on.

Come on Team Dana! How can we get the team back? When the withdrawal symptoms are better, let's start exercising more! We already walk together. We already attend aqua aerobics together. We signed up for our next belly dancing class that begins next week!

Come on Team Dana! Let's work together Mind, Body and Soul!

Dear Body, please tell the Mind when you need more help with your symptom checks. Dear Mind, please look toward the Soul to give you strength when you begin to feel depressed and confused by the Body's symptoms. Dear Soul, please do not give up on the Body and the Mind because we need your Spirit to keep us in check! We need all of you to keep Dana all together as a whole person.

Thank you so much! Hope to hear from each of you soon (Body, Mind and Soul),

Love,
Dana

I Can Be a Mommy & Have a Chronic Illness!

2011-03-18T22:55:00.001-04:00

In Chronic Babe's "I can do it!" we talk about something you thought chronic illness would never let you do until you mustered up the courage and went for it.

As you know from following my blog, my hubby and I had been trying to adopt a baby for about 6 years now, and you also know that I have several chronic illnesses that cause pain, fatigue, disability and joint replacements (among other things). Well, I have always thought of myself as a brave person and a strong woman. I was strong long before the chronic illnesses became permanent, so at least I had a good foundation! I never realized how strong or how courageous I truly was until my body tested me to the extremes, and daily life became more and more challenging. I realized when I became so overwhelmed that I just needed to step back and take a good look at myself. I had gotten overlooked. It was awfully foggy at the time and hard to see ME through all the CHRONIC STUFF! When I finally took a good hard look at myself, I realized that I didn't change at all. My health changed. I was still the same Dana that I had always been; well, I was a bit more experienced and a lot more educated about the world. I didn't realize that of course until I saw myself again for the first time.

I still had the same hopes and dreams; the same values; the same beliefs; the same goals. I had to tweak a lot of things to fit a newer, different lifestyle, but above all, I found out that I can accomplish anything and everything I set out to. Now I have to constantly tell myself, remind myself if you will, that things that once were accomplished easier, faster, and more directly are now done more slowly, carefully and what seems to appear as a more round-about way. It is an amazing discovery! I can have chronic illnesses, have goals, accomplish goals, and not lose sight of ME! I love it.

So what is so important about this. Well to me, and to all of you with similar issues, when you become Chronic Illness instead of Dana, that actually becomes your identity. You lose yourself. You lose that want for life, to live for anything including yourself. I'm not even being extreme. I'm not even talking about suicide or anything like that, although it could get that bad for some people if you don't find yourself quick enough. For me, I lost who I truly was--my spunk, my love to laugh, to dance, to see the beauty in things, and to want anything for myself.

When my hubby and I were married, nearly 11 years ago, we vowed to have a family. We new we wouldn't be complete without children. That was something that we wanted for ourselves for so long. Although, we continued to go through adoption agency after agency, the foster care system, and even adoption facilitators (as well as advertising with a facilitator online), a part of me thought it would never happen after approaching the 6 1/2 year mark. I began to fear that maybe it was God's way of telling me that I "couldn't" do it, I "couldn't" be a mommy. I started to bury the goal beneath the chronic illnesses. We signed with a new adoption place in December of '09. I started to come out of the fog and realize that I needed to start working toward that goal, to be a mommy. I knew if I didn't find that hidden "mommy" inside me, she would be lost forever. I knew I didn't want to lose that want. It was something that was highest on my list of goals. We made a promise to ourselves and God on our wedding day to have a family, and here I was, 35 years old, still childless!

The moment we began with this adoption place, filled out paperwork, had our physicals, got our fingerprints and background checks, and did our home study, Dana had surfaced! I once again was getting those wonderful "mommy" feelings! Thank God. We waited and waited with this place to be matched with a birth mother. It felt like eternity! I knew there was a baby out there for us, and that was a good sign to me that I was hopeful once again to be a "mommy." We right away put the nursery together, decided on a theme (forest animals), began decorating, and we bought our first baby layette of bath towels and onesies and set it in the nursery. Jim put the crib together. We made our photo album up to handout to birth mothers that fit our preferences. We were open to any gender, up to a year old, any race or creed and a sibling up to age 8 as well. We began to prepare family and friends. We had our website put together and were linked to as many as 15-20 other websites. We even made a video welcoming a birth mother and baby into our home. I painted a gigantic heart tree and hung it behind the crib. We waited...

The most important thing here is that the waiting wasn't painful. We prayed a lot and had faith that there was a baby out there for us. We thought the baby would most likely be of another race because of statistics, so we prepared family and friends for that. And we waited...patiently...I actually had something in my life to wait for, to dwell on, to pray about besides my chronic illnesses. It was a welcome change of pace.

Then, when it felt like time had stood still, we got a phone call in October, the week before my mom's birthday. A birth mother and her mom had chosen us to parent. Wait a minute...What did she just say? OMG! The first thought that came to mind was, already? After 10 months with this adoption place, I suddenly felt like we hadn't waited that long. I know, too funny, right?! Jim was out of town at a university outside of Philly for the weekend. He hardly ever goes out of town, but he was attending a conference. He was in the middle of a Nor'easter as well! It took him 3 hours to drive 70 miles! I hadn't heard from him in hours. I was worried and excited all at once. I didn't want to call him while he was in a storm, so I waited for him to get to his hotel. I didn't want to make a decision to speak with the birth mother and her mother without talking with my hubby first about the situation. It's only right; after all, we are a team!

I explained the situation to Jim who safely arrived at the hotel. He was so excited as well. The next day, the birth mother's mother called me at home. We spoke for two hours on the phone and hit it off well. Then I spoke briefly with the birth mother. She was very sweet. I told them that they could speak with Jim when he returned home. They agreed, but felt so far that they wanted to go ahead with this. I also agreed. Jim talked to the birth mother 2 days later. It went well. We talked all 3 of us for a while on speaker phone too. We laughed about Jim playing sports, and whether or not Michael would be a good athlete or not. She wanted us to name him Michael Robert. We agreed. We agreed to raise him Catholic like ourselves, to say the rosary, to send pictures of him to the family. We had no problem doing this. Michael was going to be our son!...

Meanwhile, our last name was leaked somehow by the adoption place. We don't know how, but what was done, was done. They googled me and found out that I had several chronic illnesses--joint diseases. Our adoption coordinator contacted me to say they were having second thoughts. I was devastated! Was I right in the beginning to think I couldn't be a mom? Was I not cut out to be a mom after all? When the birth mother's mother called me, she said some awful things to me about my illnesses and my inabilities to be a mom to Michael. She obviously didn't realize that there are people who are great moms who are in wheelchairs, who don't have the ability to use their arms, who can't walk, who are blind or deaf. To some, these are seen as inabilities to be a mother, but to those that are moms and "can do it", they are just differences. They take care of their children but find other ways to reach the same outcomes. I couldn't think of how to change their minds. I felt so hopeless and helpless, I felt myself slipping back behind the chronic illnesses again. I began to lose Dana and the mommy I was to become in less than 2 months. Think fast! What to do? I offered to fly up to meet them. I offered to have my rheumatologist call them and let them know that I am perfectly capable of taking care of a child...

They just needed time...

Time for me at that moment just made me slip further and further behind the cloud...Then the phone rang. They agreed to speak with my rheumatologist. I don't know what he said to them, but after I arranged for a time for him to contact the family, 24 hours later, the birth mother's mother called and left a message for us to contact her. We called back immediately. She said that they thought about it all, and they picked us for who we are as a family and how we will raise Michael. Anyone can get sick or hurt at anytime, and we have no control over it, so they wanted us to parent Michael. We said thanks and that we had prayed so hard over this. We felt so connected to Michael already, calling him Michael to everyone we know. He had a name, he was our son already! The phone call we received was the weekend of the feast day of St. Gerard Majella, the patron saint of childbirth and motherhood, also my mom's birthday. Michael was due on the Immaculate Conception. We prayed to St. Anthony every single day for a miracle. All of a sudden, we received a wrist rosary with St. Anthony on it, then a St. Anthony key chain, and while visiting friends in Boston, I looked in the directory to find the nearest Catholic church. 2 minutes from our hotel was the Shrine of St. Anthony. We lit a candle there and said a prayer again for a miracle! Also, our hotel # was 128, which was his due date 12/8. The birth mother and her mother gave us a gift of a picture of the Holy Family: Mary, Joseph and baby Jesus. We were still in the hotel for the feast of the Holy Family because we were out of town the entire holiday season. We found out also that the birth mother's middle name was Mary and the birth mother's mother's middle name was Joe, so Michael was like Baby Jesus at the Inn! So many wonderful religious significances in the birth of our baby. We are going to baptize him June 26 which is the weekend of the feast of St. John the Baptizer! Might as well keep with the theme!

Ok, so speaking of theme; I found out that I can be a mommy! I am a darn good mommy. I am home with Michael every day while Jim is at work. I have been feeling great. I am able to do everything that any other mom can do, but sometimes I just have to go about it a different way. I might have to lay him across my lap or carry him in sling. I might have to prop him up on a pillow and feed him a bottle that way. I might have to have Jim open the formula cans so I can pour it into the bottles. Some days, we have lazy days together where we lay in bed together and play in bed. He has adjusted well with his mommy and her chronic illnesses. Ya know, that is the only way he knows it after all. It is normal to him. I change his diapers just fine. As a matter of fact, as long as the supplies are all laid out so I can easily reach them and get to them, we get those messy poopy diapers taken care of in jiff! We have lots of fun together. I am enjoying being a mom so much. Thank God I didn't keep Mommy Dana hidden behind Chronic Illness. I am so much more than that!

Our big adventures are going to the Farmer's Market together, doctor's appointments (he knows all my doctors now), and taking walks with the stroller and his furry brother Cookie! Life is so beautiful again! I'm so glad I have Michael to share it with, to teach about life and love, and to understand about people with chronic illnesses. He will be such a compassionate and understanding person because he had ME for a MOMMY! All because I decided to search for myself again!

Thanks for listening!

Guilt Is a Real Symptom!

2011-03-16T00:15:00.000-04:00

There are so many symptoms of chronic illness that seem to cross over from one disease, illness, syndrome, etc. to another. Focusing on pain conditions because that happens to be my specialty, chronic pain conditions tend to come with fatigue, pain, loss of sleep, depression, and other widespread symptoms as well as vague symptoms that many don't even know to list as a symptom that go with chronic pain conditions. One hidden symptom that may get overlooked by the person with the chronic illness and by those around him or her is guilt, yes guilt. Now, you may ask how guilt is a symptom and not just an emotion, a feeling, or a result of being sick...so allow me to explain...

Every single day with a chronic pain condition, every decision we make, every place we go, every step we take has consequences. And we know very well that these consequences do not only affect ourselves. Yes, we would love if each decision didn't lead to another, and another, and yet another, but that is how life is. We may plan for certain things, but we all know that planning doesn't always mean a thing when it comes to a chronic illness. We never know when pain, fatigue, exhaustion, or pure overplanning can occur. We may wake up with a day that is a better pain day, but by the time we leave our house, it has shot clear up to a bad pain day. It is not our fault; it could be the weather, stress, or that we have a cold on top of our chronic condiiton. A real problem that occurs with all of this planning and pain, etc. is that we have to tell the friend that we were going to meet for lunch that we are going to have to cancel or reschedule for another day, that we just can't make it today. We might not be able to spend that extra time with our baby or child because we need to have a lot of extra resting today. Maybe you have a baby that you can't hold as much today or a young child who wanted to go to the park to play, and you had to tell him that you have to do it on another day when Mommy is feeling better. Maybe it was an important work day because you were in charge of running the meeting, and you had to call in sick, and worse yet, your boss had to take over your meeting for you. Maybe you are a religious or spiritual person, and you just can't make it to the church service today because it is so hard just to get going that you know you won't be able to stand up during the service. What do all of these scenarios have in common? The answer is GUILT! Yes the hidden symptom of chronic pain conditions. We don't always see it, and people on the outside looking in don't always see it either. Guilt is a symptom that can actually cause you to feel even worse. You may think there is no way you could possibly feel worse, but you definitely can.

I have felt the guilt build up within me when I have had to cancel on the same friend numerous times. You begin to think that friend must not understand. She must think that I am just bailing on her because I don't want to be with her. It hurts us just as much as we think they hurt because we cancel on them. We are dying inside dwelling on it over and over again. Will she ever believe that I want to go to lunch with her again? Will she think I am faking? Does she think I am really sick or that I just don't want to be with her? It is awful what it does to us. I have had the guilt of having pain and fatigue and being unable to hold my infant son as much as I'd like because it hurt too much, or my arms were too weak. I felt like he knew something was different. I felt like he thought I didn't love him anymore. It just tears at your heart! You find other ways to be present, to show your love and to play with them, but it isn't the same as holding a little baby in your arms. They are so sweet and innocent, and hopefully they have never felt pain like you have felt, so they do not understand why you won't hold them when they cry. Instead, you console them in different ways. You lay them on your lap, put them next to you and talk to them and touch them. But the guilt is too big to tuck away. Although you can't see it, it surfaces in other ways. It causes a pain so deep within your heart, no pain meds can reach it. It can't be measured on a pain scale either! My son is only 3 months old, so I do not know what it is like to make promises I can't keep to a young child who may want to go to the park or something similar, but I can certainly imagine what it would be like when my son is older.

I do not work anymore, but I did have the guilt of missing work, important dates that I was supposed to be there and had to have someone cover for me because of my illness because of my surgeries. I felt so much guilt! Also, I am a very spiritual person. I love to go to church on Sundays and holidays. When I can't because of my illness, I feel so guilty. I think that God gave me so much, I should be able to go for an hour to thank Him. And yet, I cannot! The guilt is incredible.

Guilt is real. It hurts. It is a symptom not a feeling or an emotion. We cannot ignore it. We must work through the guilt because if we don't, we will find ourselves getting sicker. It is not something that we can hold on to. It will find a way to surface because although it is an invisible symptom, it cannot stay hidden forever!

Inspiration in The Face of Adversity!

2011-02-28T22:45:00.001-05:00

I wanted to share with my followers how important it is to be positive, to keep your faith no matter how hard life may seem, and to remember everything that we experience in life that we learn from can be shared with others so that they can also learn something from it. No matter how big or how small our experiences are in life, some one out there will find something to take from them to better themselves or others. It can be an incredible feeling to know that one person can have such a huge effect on another, and that effect can be passed on further from one person to another.

When I began blogging, it was because my right shoulder collapsed, and I wanted to share with others my challenge and struggle to wait for it to be replaced. I woke up one morning in October unable to move my right arm because the shoulder had collapsed, and I had to wait until the end of March to have it replaced. I needed to share this with all of you to help me get through the pain, the trials of daily life, and to keep the strength and courage up to make it that long. I am so glad that I started this blog. I have met some wonderful people online, have realized that there are so many people out there living with chronic pain conditions, and we all need each other to share our stories with to help one another to get through the rough times, to carry on. I first want to thank you all for helping me, and second I'd like to share with you all what someone told me about my story that helped her with her life experience with pain.

Thanks...you have given me inspiration as I've gone through the process of seeing doctors, even getting the second opinion about my shoulder, and getting in a place where I think I am going to get my shoulder "fixed" after nearly 8 months. I've had myofascial spasms for 12 years; we have been calling it and treating it as fibro for the past 2 (I'm on the fibro medications now for pain, and they help a lot). I cannot imagine the arthritis pain you go through. Your story of success after shoulder replacement surgery inspires me. I tore 2 rotator cuffs (the top and "bottom" ones--supraspinatus and subscapularis) while stretching on a stretch bar--one of the morning sretches I had enjoyed for years. When I got the MRI results several months later after my pain and spasm/guarding in that arm/shoulder had not subsided, I was SHOCKED to read that all 4 of my tendons that make up the shoulder joint were unhealthy, and that 2 were damaged. I'm an attorney who helps people who have had injuries including by the healthcare establishment or MVAs--so we now laugh because when I got my MRI faxed to me at the office, someone confused it and after reading it over, said "what client is this for????" Then we realized it was MINE! Shocking.

Dana...I appreciate your attitude of gratitude, grace and help in the face of adversities. I think these qualities make you a better candidate as an adoptive parent than many people out there who don't have adversities. I say this because in my view, your comments...and your response to your health conditions overall, have been so very positive and healthy and strong. I know you are a Christian...and I am also, so I'll just say--I think that our God is a loving God, and we live in an imperfect world of free will and accidents and all sorts of wildness and imperfection. In this context, we experience illnesses and pain and losses that we can actually ask God to help us USE to get stronger. You have done this, Dana. I commend you. This is the attitude that I aspire to as I face surgery...as well as just every day when I get up and look in the mirror and say "I'm not able to walk in my own shoes today God, so help me out here, ok? Help me turn this boat around and make it a positive ride, for myself and others, can we?"

For your information, she did have her shoulder surgery, and was recovering well the last time I communicated with her. Also, with her lovely comment in mind about my being a better candidate as an adoptive parent than many others without adversities, my husband and I adopted our first child in December of 2010. It was less than 9 months after my shoulder replacement surgery. We are so blessed with a beautiful baby boy. He was 4 days old when we picked him up from the hospital. I have to say that my new shoulder came at the perfect time. I have a brand new shoulder for my brand new baby! Perfect timing! Thank you, God for listening to my prayers--both for the recovery from my surgery and for our son!

Our Health Care System

2011-02-28T17:54:00.005-05:00

(Publish date: September 7, 2010), and the theme is: Health care reform. Everyone has an opinion. What's yours? We want to hear all about your experience, what you hope will happen, what you think will actually happen. I did not enter my post in time, but I did write it. I did not publish my post though until months later due to personal situations. I have a link to the Health Care Reform Chronic Babe Blog Carnival for you to read the blog posts that were published. Please read them!

OMG! Health care reform! It is so important, and yet, I believe we may never come to a decision that will be able to help everyone equally or at the very least make everyone equally happy. I do have my own opinions on the health care reform situation. I believe that there is a desperate need for change, I believe that for those who have good insurance already it's scary for them to change anything, I also believe that for those that have no insurance or expensive insurance or the dreaded HMO's that need referrals and can only pick doctors, etc. from a list as well as for those on government aid of some kind, it is scary for them already unless changes do occur and soon. People with the good insurance that already have everything covered and can see any doctors they want, etc., they fear that changing anything will take away from what they already have. They don't want to have to wait longer than the usual wait to see specialists or to have surgery, etc. Those with anything less than good insurance fear that they may need a specialist or surgery, and they will have to wait a long time, perhaps too long, and their health may worsen or the procedures may become more expensive or too expensive to perform. Death is feared the outcome for some of those people with chronic conditions or with a terminal condition. It is all so overwhelming!

I must admit, I'm not the right person to blog about this topic probably. I have been very fortunate. I have been able to use my husband's insurance through his job which has not considered anything pre-existing. If I were to try to get my own insurance, I would be turned down instantly because of pre-existing conditions. I could always go on Medicare, but I fear that the doctors, hospitals and treatments would be less appealing and worse still, not as good at treating my conditions. I know for a fact that my shoulder surgeon doesn't take Medicare, so I would not get the best shoulder surgeon in my area to do any further shoulder surgeries because of that. I find that scary for me. Then I think about the whole picture, everyone else. I don't think it's fair that I already get top of the line health care, and others do not. Others are still waiting to be able to go to any doctor or hospital they want. That should be a human right to choose your own doctor or hospital rather than have your insurance choose it for you. So for those that have never had that right, I feel terrible that I have never had to think twice about it. For those that have no insurance at all, it would be so scary to know you have been diagnosed with a condition that will require much needed medical care, surgeries and other treatments. The financial side of that could be extremely detrimental to a lot of people.

I do believe in equal rights to all people, and health care should be included in that. I believe that there are just some things that should not only be considered privileges, but rather human rights for all people. It shouldn't be a question whether a person can afford it or not, has a job or not, has a job that will pay for it or not, etc. Every man, woman and child should have the right to equal health care. I don't know that I believe it should be forced on everyone though. Of course, those same people that complain about having universal health care/insurance should not complain when they end up with a chronic illness, a debilitating illness, or a terminal illness and then want the health care/insurance that was once "forced" upon them. I think it is something that you have to think about long and hard. If you are going to turn it down, ask yourself that question, "what if I end up with a serious illness that requires me to have health care/insurance?" There is no way of knowing ahead of time what may happen in the future when it comes to a person's health.

I can say also that the idea of getting rid of pre-existing conditions is a great idea and will help out a lot of us with chronic illnesses. Many of us also have more than one! I for one have several! I have been saying for years that one of my biggest fears is that my hubby will get a job where they will not cover me, and I will be unable to get insurance on my own unless it is Medicare. With Medicare, there are several of my meds that are not covered under the prescription plan. My out of pocket expenses would be huge!

I have not read the entire health care reform bill, so I do not know everything that is on there to change, get rid of and/or add. I can just express my opinions, concerns and fears. I am not a very political person, but I am a person living with chronic illnesses, and I am a person who is an RN with a BSN so I am educated and experienced in our health care system. I truly believe that the most important thing to keep in mind is that every change, any small addition and all things taken from the health care bill will affect someone in some way or another. If we keep that in mind, I think we will be able to come to some agreement in coming up with a health care reform bill. I think that truly that is the only way we will ever come up with a universal and equal health care system!