I Already Gave My Right Arm To Be Ambidextrous...Now Read My HIPS!

Now Read My HIPS! is returning very soon. My blog is currently under construction. I am doing some minor renovating and will begin blogging for the New Year, possibly before. I can't wait to start up again. I have missed all of my followers! I love every single one of you! You have helped me to become who I am today! I could never have continued my blog without all of your support. Please be patient, and please continue to support this blog as well as my other blog Chronically Mommy. Pass this information on to anyone that you know may be interested in knowing...To be continued...

I had my shoulder and both hips replaced, and I am changing things up a bit on this blog! I began belly dancing in 2010! Yes you read that correctly!! I am going to be blogging about my experience as a woman with several joint diseases and conditions who had her shoulder and both hips replaced who now belly dances and performs! I still have pain, but I want to blog about how I have fun too! Now Read My HIPS! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain.

Hi, I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, sjogren's, fibromyalgia, and hypermobility. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Seven years ago my spine orthopaedic surgeon told me I had a small amount of autoimmune arthritis in my SI joint. The question still remains: Is the spinal involvement due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? Whatever the diagnosis, the treatment will remain the same. I had my left hip replaced in 2003 & my right shoulder replaced in March of 2010. I literally gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012.

I began belly dancing. Yes that's correct! I began belly dancing in 2010, so now it is time to "read my hips." Pain is still another part of my life. It is just a question of when, where and how much, but I would like to use this blog to write about my experience as a woman with several joint diseases and conditions who had both hips and a shoulder replaced and now spends her free time belly dancing and performing! I belong to a dance troupe since February of 2014, Seshambeh Dance Company. I am dancing weekly with my troupe in an advanced class and on Saturdays with another class which focuses on exercise and being a strong woman. I am performing a lot more often now, at least 4 or 5 times per year! Join me in my journey!

At times, I take 16 to 20 pills a day. I go every 4 weeks to the to get a 2 hour IV for my autoimmune arthritis diseases. Just when one thing seems to be doing better, something else goes downhill! My attitude, however, is always going uphill! I am 42 years old, have been married 16 years, and my husband and I adopted Mick in Dec. of 2010! I have a lot on my plate right now, but I take it one moment at a time. I believe that God will never give me more than I can handle. However, I do need to learn to ask for help sometimes instead of always doing it by myself!

(Formerly "I Already Gave My Right Arm To Be Ambidextrous!")

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these daya are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me, help me, help me, oh.

Now Read My HIPS!

Now Read My HIPS!
Asmara "Beautiful Butterfly"

Blog with Integrity


Friday, December 30, 2011

How to Make 2012 a Happy Year!

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. (www.bellydancebysamora.com)
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!

Thursday, December 29, 2011


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...

Saturday, October 29, 2011

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...

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.

Walk Team

Walk Team





Belly Dance

Belly Dance
Before the Performance 5/6/12
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