Please, Can Anybody Hear Me?...Are You Really Listening To Your Patients?...It Takes Patience To Have Patients...

Want to check out ChronicBabe's next blog carnival? The next edition is live on August 10, 2010, and the theme is How Do You Deal with the Medical Establishment? I would love to hear your thoughts on the topic! I did not get my post finished in time to enter, but please take a look at the other posts. They are great reads!

To get my background as to what I've had to go through as a patient to finally get diagnosed with multiple chronic illnesses, please read my post: Connecting the Dots...

It can be miserable, stressful, time-consuming, overwhelming, humiliating, frustrating, patriarchal, condescending, out-of-touch, exhausting, misunderstood, misrepresented, not patient-oriented, not patient-driven, not patient-concerned, not patient-advocated, not respectful, and down-right jaw-dropping at times. I'm talking about the Medical Establishment--the system as a whole, doctors, sometimes nurses, insurance companies, pharmaceutical companies, the FDA, and on and on...

If you are a living, breathing person, you have experienced the medical establishment in some way, shape or form at some point in your life from the time you are born, taking your first breath, until that very last breath you take, which may very well be in a medical facility in both cases, and anytime in between! Being a part of the medical establishment as a patient is not always because of a negative situation or time in your life. The birth of a child is a wonderful time to cherish, and it is a great time to actually want to go to the hospital or birthing center! Of course, just because you are only expecting a new beautiful bouncing baby full of life and joy to hold and love, there are always risks when it comes to your health and that of all those involved.  Be prepared when a procedure or anything is going to be done that is not in your total control. Well, when I put it that way, you should be ready for anything at anytime because we are never truly in control at all times! OMG! I can't believe I just admitted to that! LOL!

I'm going to start off by saying that when you go for a normal check-up or physical, bring a notebook or something that has your questions already written up on it, so that you know exactly where you are going to take your appointment. Otherwise, you will forget what you were going to ask, get sidetracked by the doctors plan for the visit, and go home completely discouraged that you didn't say or do what you really wanted!  Here are some free pointers from me to you:

1. Bring a notebook or paper with prepared questions already written up but with enough room to write down any new information that you may receive, or if you come up with any new questions while waiting for the doctor or as he answers the others so you don't forget to go back in your mind.
2. Always bring a printed out list of all your meds, the frequency and amount you take, and when you take it. Also have written the doctors that prescribe them, your pharmacy phone number, and what you take the meds for. You really should know why you take your meds. If you don't know, that is a great question to put in your notebook for when you see that particular doctor next time! A printed list is also great to keep in your purse and car, and with you at all times. If there is an emergency, the emergency response team will have a list of your meds at the time they get to you to be able to give you the appropriate treatment at the soonest possible moment!  Also, if you have it saved on a disk or desktop, etc., then you can go to it easily to revise it and update it and print out a few new ones to replace the old ones. I also use my list to bring to the pharmacist to mark the meds I need refilled. It makes it so easy, and they never forget to fill any, etc.
3. Sometimes when we go to the doctor, we are told news that we don't always like to hear. We may be in denial over certain conditions that we find extremely hard to face like a terminal illness, or even an illness that we know we will live with for the rest of our lives that will be chronic and cause intense pain, probably won't kill us, but will cause a multitude of problems, dependence on others and disability.  This is why in cases like this it is important to bring someone with you, someone who is close enough to you that they care, but not so close that they will also deny and not be able to actually "hear" what the doctor or nurse is telling you.  Then, later, that person can go over it with you again and again to make sure you got everything that the doctor said, that may have just skimmed the top of your head and not actually made it into the brain or memory or a place of understanding or downloading of information.
4. We all need a patient advocate, this kind of goes with number 3, but there is a little more. The patient advocate will keep pushing the doctor to learn more about the disease or condition or the results to a certain test. She or he will also make sure that you know all there is to know about your meds and the side effects and interactions, etc. You have to be your own advocate as well. Stand up for yourself! Patients have rights! We don't walk in, get lectured on how terribly we've taken care of our bodies, that now we have many illnesses, etc. and we are left to pick up the pieces alone. NO! Don't settle for crap like that! Believe it or not, there are doctors, and these are the ones you want to have as your doctors, that will be your advocate! They will fight for your rights, work hard to find the right meds to suit you, make you feel better, and want you to have the least amount of side effects to function so that you can live as healthy and "normal" life as possible.
5. Go doctor shopping. If you don't mesh well with your doctor, look for another one. You don't have to have an awful doctor. A smart doctor doesn't have to be impersonal. There actually are doctors that will take the time to really listen to YOU! Doctors are stereotypically thought of as unfriendly, but smart because they are able to figure out what's wrong with us. They may not take the time to talk about what problems and new ailments or side effects you may be having, but they are supposed to be very smart, so you will continue to see them. You really don't have to do that. I have found that there are really great well-rounded smart doctors who will laugh with you, take time to listen, and they focus on you. They are usually the same doctors who are great patient advocates! The right doctors for you are out there, but you have to do the foot work.  Think about when you go shopping for anything, ladies...shoes, purses, laptops, cell phones and even nail polish! We take our time, compare and contrast, maybe look on-line and in person, ask friends what they like, or what they bought. It works for you men too...any gadgets and tools and vehicles or lawnmowers, etc.  You do the same thing, shop around and compare. If we do this with all these things down to what we paint on our toenails, why wouldn't we shop for the best doctor for ourselves. Truly, our health and even our lives depend on this...so shop for your doc!
6. Get a second opinion. Even if you have all the faith in the world that your doctor is right and that the MRI, lab work, and general work-up makes perfect sense, I still say get a second opinion. You could be put on a very toxic medication or even surgery that you may not necessarily need. Also, what if the lab work was incorrect, or what if the MRI was showing something that wasn't really there?  Nothing is 100% in this world so get that second opinion, and if you get a gut feeling that something isn't right, get a third, fourth, fifth, sixth, etc. opinion until your gut feels like the answer is what it truly is! Sometimes, it may seem that the entire medical establishment cannot seem to find what you want them to find, not that you want to be sick, but you ARE sick! You have been sick, and that is why you are going to all these doctors. If you feel sick, you are sick, and you should not stop looking for what is wrong until you find it. Don't let anyone say you have exhausted all options. You never can exhaust anything except maybe yourself! LOL!
7. Make sure when you start on a new treatment plan, whether it be meds, PT, an exercise program, supplements or a new way of eating, learn everything you possibly can about that treatment plan.  Go online, talk to others who have done the same treatment option, and check for local support groups or local organizations that have information about your disease and treatment options.
8. Find like-bodied, like-minded folks. It is still good if you have an acute illness, a chronic illness, a terminal illness, or any type of disease, syndrome, or disability to be with people who understand what you are going through, and know what if feels like to be sick! I also think you should have a few "normal," "healthy" friends that keep you grounded--that is the term I would use because otherwise you could end up inside yourself and lost in the disease. With your normal friends, they may do things with you that your sick friends don't that keeps your mind off of the illness and on yourself. Like-bodied, like-minded individuals are great because they don't care when you have had three straight horrible months, and so now you are focused on "me, ME, ME!"  They don't care if you want to have a pity party. They don't care when we sulk, when we cry, when we are on the couch in our PJ's all day. They don't say things like, "You don't work? I just met you, and I already hate you."  Normal people say that because they don't understand that sometimes we can't work at no fault of our own, and work to us is missed a lot of time. Many of us go to school, college even, to specialize in our passion, only to have to give it up, often at a very early age. Some of us, myself included, loved working. So continue to have a support system made up of those who have similar issues to help you get through yours and vice versa.  Also, have in you support system, those that are "normal" to distract you at times so that your life isn't all sickness and doctors!

I have the wonderful experience of being on both sides of the medical establishment. I am a registered nurse as well as a person with chronic illness. I went to school, studied my passion, worked for a short while as a nurse educator, mainly as a diabetes and asthma educator.  I worked with children for a while, then with adults, and decided I liked the hospital out-patient setting with adults and children alike.  The teaching approaches were different, but that was the biggest difference (aside from the obvious differences). Actually, adults have just as hard of a time sitting in a classroom setting and paying attention as children, and our patience can be just as easily tested by both.

Bottom line is, to be on the medical establishment side, there needs to be the consenses that the patient is in charge of his or her own health. No one makes them see the doctor, forces them to take their meds, or straps them down and does procedures without consent for the sake of the medical community!  Since this is the real case here, we should be calling the shots! We should decide how long the doctor can see us, how much we can afford, what option we think is the best for us, with the medical establishment's help with our options to choose from. We shouldn't have anything hidden from us--side effects, research, test subjects' results, and other options that we may like better or that might be our best option for us. Sometimes the medical side gets wrapped up in what they want and forgets that we have rights, and wants and reasons why we wouldn't choose that option, but we would choose another.  Not every option, treatment plan, etc. is right for every patient, and that is why it is all the more important that we are able to communicate with the medical side of this dance. The thing is that many, many times, actually most of the time, the medical side gets so lost in what they want to achieve that they always take the lead, and we, the patients, never get a turn at taking the lead!

The medical side really needs to start listening to what the patients really need and want. I think a lot of times this isn't just the medical sides fault though. Maybe if we were more prepared at our visits, they would take us more seriously as patients that are taking an interest in ourselves, as being an active participant in our care. When we show initiative, this should tell your doctors that we are not easily persuaded, and we are ready for whatever is thrown our way.

It's not just the listening though. The medical side is a system; it's a business now. It isn't healthcare so much anymore. Patients feel rushed all the time. We see the doctor in 5 to 10 minutes. Make the doctor see you and answer your questions. You should be listened to, but the doctors need to have patience to have patients. Many may have not ever learned patience because they were thrown into the health business. Some older doctors remember what healthcare is all bout, and when they have to listen to a patient, they suddenly remember the good 'ol healthcare days when you would see the doctor for a longer appointment, and the doctor knew your name, and he actually cared what was best for you and not for the medical community as a whole or what would better him/herself. So force your doctor or other medical care worker to learn patience by being a prepared patient which forces them to listen, and in turn you will get what is best for you!

So I feel, coming from both sides I can address both sides. I do not work anymore since I'm on disability. I loved being a nurse. I love people. I love to support others with chronic illness who need support to be able to fight for themselves in a system that doesn't really work for us. Knowledge is power. We are Warriors when we stay educated and stand up for ourselves and others like us. So learn all you can beforehand, be prepared, and be an advocate for yourself and others. I am a nurse still at heart, and I continue to keep up with my education hours so that my license is active. I am your advocate always! I am here for us all! We must support each other, so the medical establishment sees that we are an extremely strong force that will get our way eventually if it benefits us and others' health, well-being and our day-to-day lives!

STAY STRONG MY KNOWLEDGEABLE WARRIOR FRIENDS!!!

A tsp of Sugar, A tsp of Spice, A Dash of Everything Nice, And Several Heaping Cupfuls of Pain from Chronic Illnesses...That's What Dana Is Made of!!!

Well.... It is OFFICIAL! The topic and Date (August 11) has been set for the very FIRST GRACEFUL AGONY BLOG CARNIVAL!! The Topic for the FIRST ROUND was left up to a vote, and almost 50% of the votes went to "Let me introduce myself"... This seems like a good place to start... and is quite a generic topic, so please run with it however you'd like to... Get creative!! What brought you to Graceful Agony in the first place? What is something that nobody in our group knows about you yet? What makes YOU tick? WHO ARE YOU???? 

OK, so the title starts out kinda nice, and then you may think to yourself that it turns out to be a pretty scary title, which could make me a person you're not sure you'd want to meet. Well, I'll make it clear for you right now...You definitely want to meet me!  No, I'm not conceited at all so please don't get the wrong idea. I'm here on this planet for one reason only; I'm on a mission to unite all people with chronic diseases and chronic pain together as one force and to spread the word to those who do not have a chronic disease or chronic pain to understand what we go through day in and day out, and in my case, night in and night out!!!!

I am very purpose-driven, and if I'm not, then it's very hard for me to get up in the morning, (although I may still not always get out of bed on bad days, or semi-good-semi-bad days--depends on how you look at it). It isn't always about the pain, sometimes the fatigue is so overwhelming that it takes so much energy to use the restroom, that taking a shower, brushing my teeth and hair, putting on make-up, getting dressed, making breakfast, and then actually leaving my home, would deplete all of my energy stores! It's hard to comprehend this if you don't deal with this daily.

So why am I who I am? Good question...I could just say that I don't know, have no idea, just am, but for one that would be boring, secondly, that just wouldn't make for good writing for a blogger, and third and finally, it isn't true! I know why I am who I am. It took my getting really sick to figure it out, but now I know. It's too late to fix it, but I can use what I know about myself to help others and to continue to help myself...OK, I know stop blabbing and get on with it!

I was always a very spiritual person, and for a small portion of my life I was actually very religious. What I mean is that as a Catholic female, there was a very short time that I felt drawn to the religion vocationally. I thought I wanted to be a Catholic Sister--yes, a nun!  I knew there was a spiritual pull at a very early age which was hard for me to fully understand. I was only 10 years old when this thought entered my head, and the only thing I could think of to live a life for God as a Catholic female was to be a nun. I didn't realize that you could live a life FOR GOD and not devote your life to a religious "organization" to do so. I didn't really come to terms back then with my spirituality. I didn't understand that spirituality was something that you needed to find internally in order to meet God there and then reverse the spirituality outward toward others, all the while, touching others with God as well. Who knew?  Well, not me obviously. I probably didn't fully understand this until my 20's and 30's when my chronic pain and illnesses got the better of me. Although, I always had some kind of struggle with pain and illness in my life, it wasn't really until my 20's and 30's that I really had to step back, then step inside myself, find myself to find God.  Wow, that is some really deep stuff!

That is when I started questioning my Catholic teachings, which you can learn more about in another blog devoted to My Path of Self Discovery.  I still go to a Catholic Church on Sundays and on Holidays, and I want to raise my children in the Catholic faith, but I believe that there is a reason that there are so many different religions out there. There is a consistency in them: there is a belief in a God, love others, treat others like you want to be treated, and if you live a good life you will end up in Heaven, on the Other Side, etc.  So I don't think it really matters what religion you follow, the doctrine, etc. I believe that your spirituality is what's important because that is your connection to yourself, to your God, and to nature and others! That is what really matters. I think having an organized religion, for me, has one important aspect in life though; it gives order and a place of community for common believers.  However, these "common" believers should be able to have their own separate beliefs that differ from their Church's beliefs too ( unless of course they differ so much that they are immoral and unethical, then that is just completely not what I'm trying to say here at all!).

So, I hope this helps you to understand a little more about me. My spirituality, my relationship with God, defines me. It is what I base my relationships on, and how I look at the world, our world--nature; the animals, the trees, the wind, the rain, the sunshine, etc.  I have so much to be thankful for...

So how can someone with the amount of pain that I endure every single day of my life be thankful? How can I think of anything or anyone but myself?  How am I not mad at God?...

I can't lie; there are days that pain takes over every moment, but there will always be someone worse off than I am.  I am thankful for days that I can get out of bed. I am thankful when I can get on the computer and see all my facebook friends and friends from other social networks who can understand what I'm going through. I am thankful that there is always something that I can look forward to. Right now, we are adopting a baby! What is bigger than that!?!  The world is bigger than me!  Yes, I said it! The world is bigger than me! Sometimes when I start to get centered on myself, I have to say that, the world is bigger than me! To some, this may seem silly, but it knocks me down, and helps me to realize that it isn't all about me. I am not my own world. I am a small part of this huge, beautiful world!!! Of course, although I am just a small part, I can still be a great big voice! And I like to think that this little bitty blog is my great big voice! And yes, I do get mad at God! God to me is my Father God, my Mother God, my Friend. As my Friend, I sometimes yell at Him. I will sometimes say that I am sick and tired of being sick and tired. Why does He allow this to happen to me? After I vent, then I go to Mother God, and I ask Her to just hold me because I'm so upset with the way things have been. Life is so depressing. Then I go to Father God, and I ask for His forgiveness!!! I think He wants us to do that! He wants to be our Father, Mother, and Friend!

I have always been the person to take on every one's problems and pain. I would hold onto their pain in hopes that they wouldn't feel the pain anymore. I never knew that this was hurting me in the process! Please take it from me, do not take on other people's pain and problems! You can help them out and support them, but you can damage your own body by taking on too much.

Yep, this is another thing you may not have known about me! I am a medical intuitive and energy healer! It took me years to understand it. I just recently started doing free remote energy healings for my fb and other social network friends. I'm thinking about starting an energy healing Blog Talk Radio show. Once I get enough followers that know who I am and what I can do to help them, I can start a practice here in Atlanta, where I can see clients in person, and get paid real money. Until then, if you are in need of a healing, send me a message with the date and time you would like the healing, and if you are lying down or sitting. I would love to be able to help.

So I hope these are some things that you hadn't known about me already, and I hope I haven't scared you away. It's a lot to take in! But, I'm Me. My hubby likes to just say he was drawn to me because I was eccentric. Wow, he didn't know the half of it.  Now he has to deal with energy and dreams and the paranormal and metaphysical world that I live in, which is only just part of my world; the other part is much bigger--CHRONIC PAIN AND CHRONIC ILLNESS!

The Big Breakdown: When Everything Goes to Hell, What Do I Do?

This is a post from the next ChronicBabe Blog Carnival (publish date: July 27, 2010), and the theme is: The Big Breakdown: When Everything Goes to Hell, What Do We Do?  How do you handle yourself when everything feels like a disaster? How do you get though it and come out the other end a stronger woman?

Ok, first of all, I'd like to say that I think I have pretty good coping mechanisms, and that I can handle disasters pretty well, so when I saw the topic I didn't think it would be that difficult to write about it.  Then when it came down to it, I stared at my laptop for a good 20-25 minutes before anything came to mind. I had no idea what to say about it really. Truth be told, it doesn't really take too much for a person with a chronic illness, especially one that involves pain, and widespread pain especially, to have a breakdown. Now, I don't mean a full-fledged breakdown like you hear about people having in their mid-life--a mid-life crisis--nothing like that at all, but it doesn't take much to send our lives into a tailspin.

For me, I no longer work because I'm on disability, but I do lots of volunteer work because I am a Type A personality, over-achiever, control freak, always-has-to-be-busy-kind-of-gal.  So normally 2 to 3 days of the week I'm doing some sort of volunteer work outside the home plus whatever work is required of me to do from my couch and my laptop.  I have two dogs. One dog, Max, is blind, has diabetes, Cushing's and 3 legs, and is 13 years old. The other dog, Cookie, has fear-aggression issues because he was attacked by a dog that got into our apartment when I opened the door to take them outside. Now he is so afraid of all other dogs that he feels he needs to attack them before they get to him first! So I take them outside during the day one at a time to prevent any problems. This way I can keep total leash control over Cookie in case another dog is around, and Max has my undivided attention so he doesn't fall off the curb and get hit by a car or wander off somewhere where I can't get to him.  We always eat at home, so I always make a home-cooked dinner. I do the cleaning, minus the vacuuming and high reaching.  We are in the process of adopting a baby, and if you know of anyone that has done this before, you have to always be on top of things--paperwork, profiles, and being ready at all times for "the call."  Also, you would know that the woman tends to be the one that keeps it all in order. I order more copies of our profiles, I keep the home study up-to-date, and I make sure that the adoption website is up and running. He just assumes all of this just "happens" magically.

OK, now throw in doctor appointments, physical therapy, dental appointments, oil changes for the car, a pedicure (possibly if a friend comes to visit for something fun and girly to do), a haircut, dyeing your hair (I actually do it myself), arching your eyebrows (I also do it myself), grocery shopping, shopping for shoes (the kind that you have to buy because the flip flops are killing your feet, and you just can't deal with the pain anymore even though you have 300 flip flops in every color, and you absolutely love the convenience and cuteness factor of them), veterinary appointments for the dogs, and trips to visit family (because you're the only ones in the family that live out of town, and it falls on you to visit them instead of them to visit you).

So see where I'm at now! Things are starting to feel crazy, but this is stuff that is not too far off the normal stress charts for other people. OK, so now let's throw in a couple staff parties for my hubby that I have to go to with him. And.....hmmm.....let's also say there is a birthday party in there for a friend to go to dinner and listen to a band play or a movie or bowling or go to a bar...you get the picture. Now let's throw in the fact that there is a big event with the Young Professionals Group that I Chair; let's say the Arthritis Walk Atlanta.  Let's also say that not that many members actually show up at the Walk, and that leaves more work for the few of us there. On top of that, oh let's throw in a fibromyalgia flare.  Let's say there was a huge storm that blew in...OMG!  Thunderstorms and fibro do not mix!!!! Now let's say that I had to miss my Remicade infusion because I ended up getting a cough from an allergic reaction to feather pillows (true story), so I had to wait a whole week later to get it. Now we'll throw in an arthritis flare on top of it; oh and my arthritis is psoriatic arthritis, so my psoriasis flared too!!!!!  Then, my parotid glands swelled up to look like I had mumps because of my Sjogren's! We had finished making a video for our adoption website, so I had to work on editing that, with all my flares and other responsibilities of life....

For me, I have all these conditions, and on top of that, I've had 9 surgeries! Most recently, in March, I had a shoulder replacement at the age of 35. Imagine going through all of the above while recovering from shoulder replacement surgery!  Add to that, the stress that they could call at any moment saying they have a baby ready for you!  Going through rehab is hard enough, but with fibro and arthritis, and now migraines on top of it, I have been to hell and back!

So what do I do with that...well I reach a breaking point of course!  There is only so much that the human body can withstand.  All of that is too much!  And in reality, it only takes a swollen knee or elbow to have to cancel a night out with friends. You only need rain in the forecast to cause a flare for your fibro, and your whole week could be shot--don't even think about those plans to clean out your closet! HA! I say to that!

So what do I do to prevent a breakdown? What are my coping strategies?  Well, I am very obsessive-compulsive, so I make tons of lists and have a calendar in my purse, on my fridge, on my wall by my desk, on my phone, and on my laptop. I make sure that every single calendar is updated regularly--as soon as an appointment is added. I also have a running task list on google and on a notepad in my purse and on post-its. I prioritize them by what has to be done today, tomorrow, this week, next week, this month, next month, within 3 months, within 6 months, within 9 months, and within the year. And daily, I update the priorities. I know it sounds like a lot, but if I don't do this, my foggy brain gets confused, mixed-up, unable to concentrate, depressed, anxious, nervous, and everything that I have to do seems huge and like it could never get done. That is when I totally freak out!!!!

A couple weeks ago, for instance, I was extremely foggy and could hardly concentrate on normal daily tasks. I had a dental appointment, and when I returned to my car in the parking lot, the car door was wide open. I forgot to shut my car door!!! OMG! I thought I was totally losing my mind. On this particular day, I had a list of things to do that were not prioritized. My hubby asked me to make some errands for him after my dental appointment. I put everything that I needed to do in a bag in the front seat of the car (except the bank deposit--which I placed in my purse thank God).  I did my errands, still trying to remember how I could have forgotten to close my car door--I did however lock it. Thank goodness I did that because that surely kept the robbers away! I finally got home, mentally exhausted, only to find my apartment door ajar! Yes, I left my home, and just let the door fall gently closed behind me without a thought. I didn't pull it all the way closed or lock it! I just went to my car with my bag-full of errands to run after my appointment, already stressing over it because I didn't have it well-planned out like I usually do!

So that is why all the calendars, notepads, task-lists and post-its are so important to me!!! They literally keep my mind intact!

So that is one coping mechanism--I guess I can call it organization or scheduling or just obsessing and compulsing!

I also make sure that I begin to treat my pain immediately. I cannot push myself through the pain. I am a strong person, but I don't feel that shows strength at all. I think that shows that your body is telling you to slow down--listen to it. Rest, take pain meds if you have to. Take a warm bath, meditate, relax...listen to mood music, maybe do light exercise. I actually like swimming when I first feel pain coming on, not when it is full-blown, but just at the first sign. It releases endorphins and makes me feel better fast.

One really big coping mechanism is talking about what is going on. Write it down if you don't feel comfortable talking about it to another person. I started blogging for that very reason!  I joined ChronicBabe and other social networks for those who are chronically ill or in chronic pain. I have lots of friends who share my illnesses or illnesses like them to be able to talk to them about it.  On facebook, a good 90% of my friends are those with chronic illnesses. It is great to have that support! I think that it is definitely needed!

I also see a counselor/therapist regularly. I was going weekly, well until my insurance said I have to go every other week. So now I go every other week. I look forward to seeing Suzanne. There is a healing process that goes on when you talk to someone that isn't a friend or a family member, but rather, is a professional person. She isn't going to walk into another room; she isn't going to think you are being self-centered always talking about ME, ME, ME!  I always feel so good when I leave her office! If you haven't gone before, go now--go before you reach that breakdown. That is what I suggest.

Also, pray, pray, pray!  No matter what religious or spiritual belief system you have, pray to your higher power. I pray to God My Mother and God My Father! I pray for strength when I think there is no way that I can find it, courage when I think I can't take one more step, and I pray to learn from my own experiences as well as from the experiences of others. Afterall, if we aren't here to learn, and in turn to use that knowledge to help others with similar problems, situations and concerns, then what the heck are we here for?

That is how I come out a stronger person in the end, after all is said and done. After all of life's stresses, and my body's working against me, and when people wonder just how I'm gonna be able to do it yet again, I do!

We are all WARRIORS!!!!

God grant me the Serenity to accept the things I cannot change,

    The Courage to change the things I can,

          And the Wisdom to know the difference!

                                                                        Amen!

Connecting The Dots...

Although you know about a lot of my medical problems, I think it's important to go over the entire medical history of my struggle to find the right diagnoses. Many people are going through the same thing everyday. It's a terrible thing to go through. It takes forever...lots of pain and suffering before the right meds are prescribed. It's a hard life to live with a chronic pain illness anyway, but getting to the diagnosis is half the battle. 

 

I have Psoriatic Arthritis, Sjogren's, fibromyalgia, CFS, Hypermobility EDS, Osteonecrosis,
Osteopenia, Osteoarthritis, Pseudotumor Cerebri, Endometriosis, and so
much more. I was always a sickly child. I didn't walk until I was 16
mos. I couldn't flush the toilet or turn the door knob until I was 5
years old. I was a dancer starting at a very young age, 2, b/c my mom
thought it would help build up my muscles and strength. I always had
aches and pains since I was a young child, but doctors always thought it was because I danced. Also, the doctors said that my immune system was not fully developed, so I would pick up everything. So I had to be extra
careful around others. A few of my diseases are Auto-Immune diseases,
the others are not.

I was always sick. In second grade, I missed 32 days of school. I would
get strep throat every single time I returned to school. Then I ended up
w/ chicken pox that same school year so bad that it was in the corners
of my eyes, my ears, the bottoms of my feet, etc. My body was covered!

In High School, I had Mono from the Epstein Barr Virus, and was very
sick from it. I had no energy at all. I had heard about Mono before, but
never knew how drained you really felt. It took me 6 months to feel
human again.

Again in College, I had Mono again. It was even worse. I slept through
an entire semester. I was so sick. I didn't eat. I lost weight. It was
awful. I found out that I would continue to get Mono 7 times at least,
each time being worse and worse.

One year I had Mono an Shingles at the same time. I felt like a truck
hit me and put it in reverse to back up over me a second time. Then,
that same year, I got Shingles again. That is when my joints began to
really start hurting me again. I thought it was still from the Mono, but
it just wouldn't go away. I was told that I had Chronic Fatigue
Syndrome, but the doctor said that most medical people don't believe in
it, so I would have a hard time getting treated. I was also diagnosed
with hypertension in 1997. I had a hypertensive storm. It was severely
high--280/120. They told me that it was primary hypertension w/ no
underlying cause.

I got married in 2000, and my hubby knew all about my illnesses, but he
married me anyway. I began having pain in all my joints.The doctors said
there was nothing wrong w/ me, but no one x-rayed my knees or hips or
did any tests on my legs at all. Instead, they did a brain scan to
search for lesions to rule out MS. When that was negative, they no
longer searched for anything physical. They assumed it was
psychological. I was put on antidepressants for depression. I was told
depression could cause pain.

I had horrible reactions to the antidepressants.


We moved to KY in 2002. I didn't have any doctors yet, so I ran out of
meds. I went to see a psychiatrist who said that I wasn't depressed and
shouldn't be on antidepressants. Then I couldn't walk up our back steps.
The PCP sent me to an orthopaedic surgeon who did an x-ray. He found
nothing. But he told me that he had an idea what it was. He sent me for
an MRI. He told me then that my diagnosis was osteonecrosis or avascular
necrosis of both hips. Two months later it showed up on an x-ray. It
was stage 3. One month later, I had core decompression on both hips. The
right hip took; the left did not. I was in a wheelchair the following
year and remained there for 6 months. I had a total hip replacement of
the left hip in Dec. 2003. I was 29 years old. I went from the wheel
chair, to a walker, to a cane. I used the cane for quite a while until I
switched arms and used the cane for the other hip.

I didn't understand why all my joints and muscles hurt so much though if
I had AVN/ON in only my hips. I soon found out that I had AVN/ON in my
knees and shoulders as well, and the shoulders were as bad as the hips.
Then a rheumatologist said that I had to have some type of connective
tissue disease if I had all of these joints involved in AVN/ON. Already
AVN/ON is so rare to begin w/, but to have 6 joints w/ idiopathic
involvement almost never occurs.

I was diagnosed w/ sero-negative rheumatoid arthritis in 2003. Then it
was changed to sero-negative spondylarthropathy
involvement. Then I was also diagnosed w/ Sjogren's that same year when I
found out I had no tear production, and my cornea's had sores on them. I
also had blocked salivary glands b/c no saliva was being produced. I
was put on anti-inflammatories, oxycontin, artificial tears, restasis,
pilocarpine, and an anti-malaria medication (plaquenil) for arthritis.

We moved to RI in 2006, when I was finally diagnosed with fibromyalgia
after having excruciating muscle pain for all those years w/ no relief.
He started me on an antidepressant, hoping for no crazy side-effect like
before, and also a muscle relaxer. It was a good start.

RI was a great place for me to live for a short 9 months. I was finally
diagnosed with psoriatic arthritis when I broke out w/ psoriasis from
head to toe, and I also had a sausage digit indicative of psoriatic
arthritis. I found out later that I had psoriasis when I was a child, so
that would have helped w/ an earlier diagnosis. I also had my
medication changed from plaquenil to methotrexate (a chemotherapy
medication). My fibromyalgia medication remained the same for the time
being.

We moved to GA in 2007. My rheumy there decided that he didn't care what
my medical records said. He took me off all my medications to see for
himself if my joints would swell. I couldn't even believe this was a
real Atlanta doctor. He was even voted Atlanta's Best Docs. In the
meantime, I tried to get into another local rheumy that I heard was a
great doctor. While I waited those 5 months however, I could hardly
move. I also was waiting to get into a pain doctor for the AVN/ON and
fibromyalgia treatment, which also took several months. I had pain where
I didn't even know you could have pain. I had sensations in my body
that I never felt before. I literally prayed to God that I would just
die!

One week before my appt w/ my new rheumy, my elbow swelled up to the
size of a softball. I went to the ER just so someone had record of it
for my new rheumy. They wanted to know at the hospital if I wanted
something for the pain or any treatment, and all I wanted was an x-ray
or mri and written record of proof that my elbow was indeed swollen from
fluid on the joint, that I indeed had synovitis.

I had already gotten in to see my pain doctor by then and was given
oxycontin as well as a medication that works on the central nervous
system for pain for the fibromyalgia called Zonegran. {I actually had
been on it before in 2002, when my optic nerve was swollen. I had
pseudotumor cerebri. No one knew why, but I had severe headaches w/
nausea and other visual disturbances daily. I had also lost some of my
sight. While on Zonegran, it decreased the pressure behind my eye,
causing the pain to go away and my vision returned to normal. I was
taken off the medication after being on it back then until 2003 because I
was told w/ pseudotumor cerebri, after 6 months of treatment, if it
goes away, it won't come back. Well, I noticed that I wasn't really
watching TV anymore, but just listening, then when driving, I could no
longer see the street signs, and then I couldn't tell which way the cars
were facing on one-way streets to know which ones to turn down. Then I
could see nothing, and the headaches returned. The pseudotumor cerebri
came back w/ a vengence. No one understood why, but I was put on a
different medication than Zonegran in 2004. It was called Topamax. It is
used a lot w/ migraines, but it also relieves the pressure. I was just
on an extremely high dose, and I lost a whole lot of weight w/ it.} So
when I went to see the pain doctor and he put me on Zonegran for the
fibromyalgia, I already knew how I would do on it b/c I had been on it
before.

Then I went back to that pain clinic and my pain doctor had left the
practice rather suddenly so I was placed w/ another doctor in the group
who wasn't w/ my insurance. Of course they didn't check on that. I ended
up paying a ton of money out of pocket for an out of network provider.
Then he said I probably needed to up my oxycontin after so many years of
being on the same dose of 10 mg long acting twice a day. He said that
your body gets used to it. I agreed although I wasn't quite sure I
agreed to his decision. He wrote a script for oxycodone 15mg twice
daily. The problem was that this script was not a generic for the long
acting; it was a short-acting medication. The doctor didn't even know
what the heck he was prescribing me. I called the pharmacist b/c I
thought it was odd that it wasn't Oxycontin, and that it didn't say XR
or SR or something like that after it. The pharmacist said it was indeed
short-acting. So I contacted the nurse w/ my concern. He really thought
it was a new dose for Oxycontin long-acting. He apologized and gave me
my original script again. He said he could write me a new script for 20
mg twice a day for the long acting to up the dose. I said "no." firmly
b/c I didn't think I wanted to go up in dose anyway. That same doctor
also said he was going to give me and injection in my shoulder. I waited
w/ my arm out of my sleeve, and he never returned to the patient room.
The nurse came in w/ my fee slip and my script and told me to come back
in a month. He just totally forgot. So I asked to please give me a
competent doctor that was at least in my network. Finally they gave me
the head doctor for the group as my new doctor. One day all patients on
narcotics were ordered to take a urine test to make sure they are
actually taking the drugs prescribed for them. No problem. I voided in a
cup, set it on the counter, and left.

A month later, I came back. The doctor came in and said that my test
came back positive for cocaine and negative for oxycontin. I was
shocked. Obviously, either one of the nursing staff switched it on
purpose or accidentally or it happened at the lab, but the doctor didn't
believe my story b/c he had the results from the lab. I told him I was
going to get a lawyer and everything b/c they didn't even test it
correctly. Drug testing needs to be sealed in front of the patient, etc.
That was not done. I have no idea what they sent as my urine. It was
finally straightened out when I came in a week later and tested again w/
no sign of cocaine and normal levels of oxycontin. It was obvious that
the other urine wasn't mine. They have changed the way they test for
drugs now, etc. The problem is that the first test is already part of my
record. He had to type a letter and put it in my chart stating his
belief that it wasn't my urine. It was a horrible ordeal.

My new rheumy meanwhile started me back on all my anti-inflammatories,
methotrexate, and remicade (an IV infusion for arthritis), as well as
flexeril and skelaxin (muscle relaxers for fibromyalgia). He also gave
me pilocarpine for saliva, the supplements that would be depleted by
methotrexate, and pain patches (non-narcotic). He tested my vitamin b-12
and D levels. They were next to nothing, so he put me on extremely high
doses of those. He did a bone density test as well, which still showed
osteopenia--not quite osteoporosis. He wanted to put me on calcium, but
my bones do not absorb calcium supplements. {Back in 2004, a metabolic
bone doctor tested me out for all kinds of things. He said that I had a
lot of calcium deposits outside of the bone, I also had kidney stones
that were calcium oxalate. He told me that I should cut calcium out of
my diet. Because I had such a low vitamin D, he told me to take vitamin D
supplements instead.} Obviously, the amount of vitamin D that I had
been taking was not enough. Then, when I increased my dose to 2000 IU
per day, my calcium in my blood decreased. It had been incredibly high.
Also, I no longer have the calcium deposits and haven't had any kidney
stones either.

So what I didn't mention was that I also had severe problems w/ plantar
fasciitis, achilles tendonitis, tenosynovitis in my wrists, tendonitis
in my elbows, bursitis in my shoulders, problems w/ my ACL's, my SI
joint, and my neck, and was told that my pelvis looked like it was
crushed in an auto accident.

I've been skin tested 4 times for allergies, and all my allergists have
said the same thing. They have never seen reactions like mine. I am
allergic to everything and w/ a huge reaction. I carry 2 epi-pens and
albuterol. I also have asthma. I have a severe shellfish allergy and
latex allergy--they both cause anaphylaxis. I have many food allergies. I
react to changes in temperatures w/ hives. The sun gives me hives. I
have to have tinted windows on my car. I have so many sensitivities. I
also have endometriosis. I had 2 laparoscopies. I was in menopause for 6
years. I don't even know if I'm having periods or not again, for real. I
was put on the Nuva Ring in 2002, and that is when I began having a
cycle again. Now I keep the ring in to just have 4 periods a year, but I
only bleed for 1 day. So again, I'm not certain that if I stopped the
ring I would still have a period. I had a fertility doctor test my
levels in 2002, and she said I was at the level of a pre-pubescent 5
year old. I'm not even sure what that means. I had periods for years up
to age 21. Then they stopped.

My right shoulder collapsed the day before Halloween this past Oct. I
had to wait until March 29th to finally have it replaced. I have been
working very hard to rehab it. I'm doing very well w/ it, but I'm also
currently in PT for my back and neck, PT/OT for my hands and wrists b/c
of hypermobility EDS, and also using a TENS unit and aqua therapy.

The reason I wanted to share this w/ you is that we all have such
incredible medical histories. Many times we are told that nothing is
connected, and that we have all these different diagnoses. How can one
person who never drank or smoke or did drugs have so many things wrong
w/ them? I was premature. I was born 2 months early, weighing 4 lbs 11
oz. They found nothing wrong w/ me at birth. I believe that I always had
something wrong w/ my immune system that affected immune response to
allergens, and has attacked itself in many ways causing many auto-immune
diseases. I think that they will figure out that a lot more of my
diseases will end up being auto-immune or auto-immune related. So what
about your story? Do you you think there is a connection? Can you
connect the dots?

                                         

Congratulations To....ME! I Received The Versatile Bloggers Award, My Very First Blog Award!

 VERSATILE BLOGGER AWARD!!!!!!!!!

 

 I would like to first start out by thanking Shalunya from Gypsy Shalunya Graceful living under trying circumstances for giving me this awesome award. I am extremely excited to accept it because it is my very first blogger award. I'd like to thank Shalunya, for this truly remarkable award, Susan for inspiring me to use the deep desire to write to start out as a blogger, Mo for being the first person to follow my work as an inexperienced but anxious and eager blogger, Selena for always encouraging me to express more, and Migrainista for being my most devoted follower. Shalunya wrote...

I always love reading your blog and I wanted to make sure I told you so!!! I am passing the Versatile Bloggers Award onto you.  

Rule #1: Thank the person who gave you the award.   Shalunya from Gypsy Shalunya. Rule #2: Share seven things about yourself.   

1. I am passionate about writing, and would love to write for a magazine about health or something like that. I have been secretly writing a fiction novel and auto-biography for several years now. Blogging fills that need to write in me. However, I really enjoy a pen to paper. The books that I'm working on are currently all being done by hand in notebooks. 
2. I was a dancer when I was younger, starting at age 2. I ended up sticking w/ strictly ballet and started dancing for the company St. Louis Performing Arts Centre in MO. It is no longer in business. It was the only Cechetti style ballet in the state at the time. I was in the Nutcracker Suite w/ ballet companies Kansas City Ballet and Dance St. Louis (Missouri State Ballet). I would love to dance again, and although my many joint and connective tissue diseases keep me from physically dancing again, I will always "be" a dancer. No one can take that away from me. In my mind, I am always dancing... 
3. I am living 2 completely separate lives. And in one of my lives that I have kept secret for many, many years, I am beginning to share w/ others my abilities as a clairaudient, a clairsentient, an intuitive (mostly medical), and an energy healer. I'm still in the early stages of understanding it, but I believe my purpose is to help others to better deal w/ pain, lose, illness, and injury as God works through me. 
4. My husband and I are in the process of adopting a baby/a child/siblings. We have been trying to adopt for 6 years and have worked w/ several agencies including the state to adopt a foster child/siblings. The state even lost our paperwork. Now we feel very content w/ our adoption facilitator out of California, Lifetime Adoption. We are at the end, just awaiting a match for a birth mother to pick us. If anyone is interested in finding more about us because you know of someone who is pregnant and thinking about adoption, visit Dana and Jim's Adoption Website. 
5. I love the paranormal and supernatural! It fascinates me! I read and learn all about it from past lives, to ghosts and spirits, to haunted houses, to psychics and mediums, to astral travel, to magic, to animal totems, to angels and spirit guides....and I could go on and on. I even went to a paranormal and metaphysical convention last month in Atlanta, Through the Veil. I met some wonderful people, like Chip Coffey, Chris Fleming, and Christopher Moon--all of which can be seen on paranormal TV programs! 
6. My husband and I have lived together in MO, KY, RI and now GA in our 10 years of marriage and our 16 years of being together (11 of those years were together-together under the same room). Of course, we did stay together a lot when we lived in the same dorm in St. Louis, and I would stay w/ him and his mom in their apartment as well. 
7. Not surprising at all that I have several joint and connective tissue diseases, both auto-immune and not because I have always been so empathic to those around me, feeling what they feel. I have taken on entirely too much pain from those around me in my life, and now have so many chronic pain conditions--I can't even call it irony!  I call it a burden that my body cannot carry anymore. My body's foundation literally cannot carry anyone elses problems, pain or issues anymore. I realized in my late 20's and early 30's that a person must take care of themselves before ever helping anyone else. You cannot help anyone if you are not strong enough to stand on your own.  If someone needed a walker to use to help them to walk, they would not use one that had a wobbly leg. So why would you lean on someone for help all the time, that can't even help herself?  I am helping myself now. My meds are working, I'm exercisng, I had a hip replacement in '03 at age 29 and a shoulder replacement this past March at age 35. So, basically, I'm becoming stronger physically, mentally, emotionally, and spiritually!  

Rule #3: Pass the award onto 15 bloggers who you have recently discovered and you think are are fantastic!!

1. Leslie @ Getting Closer to Myself 
2. Annie @ It's Time to Get Over How Fragile You Are 
3. Maya @ Loving with Chronic Illness 
4. Mo @ Mo Is Blogging...I Think
5. Lauren @ Novel Patient
6. Selena @ Oh My Aches and Pains
7. Kerri @ six until me 
8. Stephanie Lynn @ Sudden Randomness 
9. Kathy @ Fibrocondriac 
10. Judith @ Fibromyalgia and Life Altering Conditions
11. How Can I Explain It To You? Just A Grad Student with Lupus
12. How To Cope with Pain
13. Becky @ Instructions Not Included
14. One Disadventure After Another
15. Lipstick, Perfume, and Too Many Pills a sick girl's quest for normalcy

I love these blogs so much (and Shalunya's and Migrainista's) as well. Of course, Shalunya just received her award in order to pass it on to myself and Migrainista so I'm giving the other well-deserved versatile bloggers their turn for this award! So Rock on Bloggers!!!! Thank you all for giving me so much to read, learn, stop to dwell on for a moment, and some of you who have given me great ideas to expand upon with my blog....

SO HERE'S TO YOU ALL..........................................

VERSATILE BLOGGER AWARD!!!    

When I was first told about the theme being Passion, my mind automatically went to what everyone's goes to...a strong sexual desire...

This edition of Chronic Babe's Blog Carnival went live on June 15, 2010, and the theme is Passion. We would love to hear your thoughts on the topic, which really, could go in any direction!Check out the rest of the Chronic Babe's Blogs!


Hmmm...When I was first told about the theme being Passion, my mind automatically went to what everyone's  goes to...a strong sexual desire...

When you look the word "passion" up in the dictionary, it says,

1. A powerful emotion, such as love, joy, hatred, or anger.

2. 

    a. Ardent love.

    b. Strong sexual desire; lust.

    c. The object of such love or desire.

3.

    a. Boundless enthusiasm.

    b. The object of such enthusiasm.

4. An abandoned display of emotion, especially of anger.

I think when you are talking about someone with a chronic disease or illness, and you ask them to write about their passion, you will get so many answers as well a so many ways to answer it. For me, passion can be used as a powerful, intense emotion. Richard Brinsley Sheridan wrote, "There is not a passion so strongly rooted in the human heart as envy."  I also have passion in my life that is a burning fire, as Oliver Wendell Holmes, Jr. said, "In our youth our hearts were touched with fire [passion]."  Passion can be a feeling of love for another person, or an intense feeling of love for something. And passion is commonly called zeal when we speak of a strong, enthusiastic devotion to a cause, ideal, or goal and tireless diligence in its furtherance. "Laurie [resolved], with a glow of philanthropic zeal [passion], to found and endow an institution for ... women with artistic tendencies" (Louisa May Alcott). So synonyms for passion are fervor, fire, zeal,  and ardor.

I, of course, have a burning passion for my husband. We just had our 10th anniversary on June 10th, 2010, so how fitting it is to speak of passion. Now, we may not have a sex life that others would necessarily describe as "strong" or "sexual," but there is a fire, I swear. After 10 years of marriage, there is still that spark.  Don't worry, I'm not going to go into detail, but although we can't do what healthy couples can in the bedroom, we definitely make do.

Also, I have a passion for my husband that is a love like nothing I've ever felt for another human being. It is a love that so intense, that I would give my life for him.  Now that is the definition of passion. I also have a passion, a love for the environment, for this world. I don't want people to ruin it. This is it people; it's all we have, take care of it! I have a deep connection to people, animals, trees, plants, God, the angels, my spirit guides, and all things that have energy--which is every single thing. Everything has energy, so ever single thing is connected. I feel that connection. I have a special passion for all of those things, God's creation!

Then, there is the passion for a cause. I think that this is pretty self-explanatory. If you or someone you are close to have/has a certain disease or illness, you want to fight for a cure, a treatment or for more research to understand it more.  Everyone out there who has chronic pain from arthritis, fibromyalgia, cancer, etc. wants to find a cure, wants to help those that are in pain like them, wants to support people with the same or similar issues. It becomes a tireless, diligent fight, an endless battle, a passion!  I support causes such as: arthritis, fibromyalgia, AVN, chronic pain, saving the planet, saving the animals, conservation, anything that helps children, and also any cause that will help us to keep our minds open, to reach a higher consciousness, to understand our purpose here, so that this world can achieve a balance of energy and truly be healed!

So this is a list of things that I have a passion for:                              
1. The environment.                                                                         
2. Animals.                                                                                      
3. Unity.
4. Acceptance.
5. Spiritualism.
6. Life.
7. Family.
8. Healing.
9. Friendship.
10. Prayer.
11. My Many Causes.
12. God.
13. My Angels.
14. My Spirit Guides.
15. The Arts: Dance, Music, Poetry, Painting, etc.
16. Food.
17. Water.
18. Writing.
19. Reading.
20. Swimming.

This is a list of what [who] I have a burning passion for:

1. My Husband.

2. My Baby That We Will Adopt Someday. 
3. Max and Cookie "Buddy" (Our Fur Kids). They Are 10 And 13 Years Old.

What I Like To Do To Help Myself When I'm Having A Bad Day...

"Welcome to our fifth edition of ChronicBabe Carnival! We're talking about our favorite self-care tools and techniques. ChronicBabes want to be AWAP (As Well As Possible). But sometimes chronic illness gets in the way and we forget to take care of ourselves. Or we get stuck in survival mode. Self-care can sometimes be a challenge. The bloggers of ChronicBabe Carnival #5 are sharing some seriously useful self-care tools and techniques. Take a look!"

This is an interesting topic because I've had a few bad days--weeks since the week leading up to the Arthritis Walk Atlanta up until now.  It took so much energy to prepare for the day, then finally getting to the day, and actually walking a mile, was a lot more than my body could really sustain.  I can't even believe that I walked the mile without my cane. I haven't been using it since my right shoulder was replaced because (even though I used it in the other hand) it makes it impossible to carry anything. I can't hold anything yet with my arm that had the shoulder replacement, and when you put a cane in the other hand, well, you might as well forget it--you just can't carry anything. I did find a purse/fanny pack that was actually stylish. I can use that!

So then my mother-in-law came into town, and we went to Zoo Atlanta. Although it is a small zoo, it was 90 degrees outside, humid, and I still was fatigued, exhausted and in a lot of pain since the Walk. Also, it may be a small zoo, but it is all hills!

After she left, I just collapsed! I decided that since my orthopaedic surgeon told me that I can go back to the pool at the gym to move my arm around, that would be a great idea to do on Saturday for the long weekend. I went there for 45 minutes while my husband was working out. I started in the hot tub just moving my arm all around. Then I moved to the pool. I can't swim yet because I can't move my arms fast enough to keep afloat, so I walked back and forth, moving my arms in the water with some resistance. It didn't seem hard, and I really didn't feel tired when I finished. Oh, but when I got home, I hurt so bad! I actually took 3 pain pills that day! I went to bed and slept until 10 o'clock the next day. Then on Sunday before Memorial Day, I slept all day long; I just couldn't keep my eyes open! I looked at the clock and it was 11, then 2pm, then 4pm, then Jim was coming home from work and it was almost 6pm!

So this leads to what I can do to help myself when I'm having a bad day...

Obviously, one of the best things I can do for myself is get some well-deserved sleep. It's amazing; I can't sleep worth a damn at night, but when I need to, I'll sleep my whole day away on the couch. It doesn't seem to make much sense to healthy people, but I'll bet you chronics out there get it!  Also, I always feel better when I can easily grab something to eat that is healthy. I really enjoy Kashi. They have good granola bars and other snack foods as well as frozen foods.  It is hard to have to cook when you don't feel well.  I really love to cook, but when I'm so fatigued that I can't stand longer than 5 to 10 minutes at a time, cooking is off the list.  So then there are warm baths...I love a warm bath. Sometimes I'll sprinkle some epsom salts in there. I love natural shampoos and conditioners and body washes. Right now I'm using Tea Tree Oil shampoo and conditioner and for my body wash--pomegranate acai berry wash. I also use Tea Tree Oil in a dish and light a candle under it to burn the oil. I love to use aromatherapy. I find it relaxing. It helps me to feel better mentally as well as physically. I try to find time to get a full body massage or a foot massage or even a pedicure. It's nice to be self-endulgent sometimes!

I like to read and write--journaling is very therapeutic, and actually that is how I began blogging in the first place. I enjoy nature--God gave it to us, and I believe we should take advantage of it more when we are able to. I try to walk the dogs more often. On bad days, I walk them one at a time, and I take them on shorter, more frequent walks instead of longer less frequent walks. Music can be relaxing if you choose the right kind, but of course, it also depends on your likes and dislikes as well. I prefer country music and classical when I'm having a bad day. Anything any louder makes my head hurt more.

I have sparked an interest in energy healing. I have gone to an energy healer and looked into other healing arts. I am a very spiritual person, and I firmly believe that when that person places her hand on or above me, God is working through her. Miraculously, I can feel God's energy pulsing through my body and literally "healing" my pain. I would recommend it highly. The down side is that it is not covered by insurance usually and can become expensive. Try it once and you'll see! Prayer and meditation can also work very well. Also, try to use healing energy on yourself. It is amazing!

I also find that being able to exercise at the gym, for me it's in the pool, is really great if I'm able to. Since I'm unable to actually swim right now, just being in the water is therapeutic to me...

Connecting with others is important to me because I tend to go inside myself on bad days. I withdraw from the world. I like to be able to go online and connect with my different network communities, blog communities, and email friends and family. I also like to be able to pick up the phone and talk to people if I need the company. What I've found interesting is that when I'm having bad days, I'm drawn more to those who are sick like me, but when I feel good (it's all relative) I am able to communicate with anyone sick or not. It seems like it's harder to keep my attention with those that don't understand because they don't live it. And of course, let's face it, even good days, are bad days for those that are not sick, so how can we even explain that our world is collapsing around us? It is just easier to be around those who really get it on those really bad days.

I love to just relax with my furkids on the couch and get all caught up with the Lifetime Movie Network! That is my ultimate bad day revival kit. Take a warm bath, a walk with nature and the furkids. Relax with my favorite book, sleep for hours, awake with my laptop to catch up with friends, grab quick snacks all day long, and then give an old friend a call on the phone. If she stops by, that would make it even better!

Am I Allowed to Be Sad, Angry and Upset on Mother's Day?

I know that Mother's Day is such a lovely day for most people, but to be honest, I hate it!  I try to avoid it all day long. I hope that I get my own mom's voicemail so that I don't have to speak to her and can just leave her a message.  It's just too painful for me. I always send her a card and a gift card to someplace she really likes. This year I sent her a gift card to Talbot's. She works there and loves their clothes. I also send a card to my grandmother. I only have one remaining grandparent alive--that includes my hubby's as well, just the one, Gammie--and she lives in a nursing home with Alzheimer's Disease, if you can really call that living. Then, I send a card to my mother-in-law with a gift card also included. This year she received a Target gift card. This way, she can pick out anything she wants. And of course there's my other mother, my friend Liz's mom Kim. I always send her a mother's day card too. Liz was always like my little sis, and she was even my maid of honor in our wedding, so we share our moms. What we don't get from one mom, we receive from the other.  It just seems to work out good that way. This year I got 2 extra mother's day cards because we have 2 friends who had babies in the fall, so this is their first mother's day! 

Ok, fine on the cards...

Besides that, I like to stay to myself and not really talk to anyone, or stay busy to forget that it actually is mother's day.  I always thought that we would be married and have tons of kids by now. Jim is 36, and I'm 35.  When my parents were 35, I was already 15 years old, and my brother was 10. The same goes for Jim; he was already 15 as well.  I just always thought that would be me. I just thought we would start a little bit later of course because we got married when we were 25 and 26. I thought we would have a baby when I was 27 or 28, and then when I was 30, and then again when I was 33, another at 35, and our last at 38. The perfect house full of kids! I always imagined a house full of children's laughter; children running all around, a big kitchen table--long enough to fit everyone--bunk beds, a tree house, and a tire hanging from an old oak tree.  That is how I pictured it. Of course, when you picture a house full of children running and screaming, you also picture yourself "not sick".  So, when we found out I had all these chronic illnesses, I scaled down my dream a a bit.

I imagined us with 2 children a couple years apart, a boy and a girl--the girl is older. She has dark curls, dark skin, and blue eyes, and the baby is a boy with lighter skin, lighter hair and blue eyes.  And yep, you guessed it, I didn't carry them in my tummy.  Ya know, I never ever imagined that part though. I never thought about what it would be like to be pregnant. So I'm OK with missing out on that part. I always imagined that my kids would all look different, and that none would look like me.  Kinda funny, right? So, yes, you guessed it, I always imagined that our big family would be an adopted family.  And now, I believe that little girl will be adopted, but I'm not so sure about that little boy.  I'm thinking for our second baby, we might think about a surrogate. We would use Jim's sperm and a donor egg. So yes, that baby would still not look like me. It's OK with me though still. I don't need my kids to look like me. I just want kids soooooo badly!  Like I said, I always pictured us with a family. Now here we are married nearly 10 years with no kids, well no human kids. We do have 2 furkids who have brought us a lot of love and joy, but nothing near what 2 human kids would bring us. I just will not feel fulfilled without human children.

So today when I called my mom, as her phone rang and rang, and I prayed and prayed for her voicemail, and suddenly I got it..."Hi this is..." Oh, thank God. I don't have to talk to anyone about mother's day. I'm off scott-free! No sooner did I leave her a message and hang up did my phone ring.  "Did you just call me? I missed a call and when I looked at my missed call, it looked like your area code." Damn. I have to talk to someone on mother's day, a mother, and my mother at that.  I told her happy mom's day and let her know that her card was on the way. She asked what I was doing and wanted to know if the dogs got me anything. She wanted to know exactly what was going on with the birthmother that is interested in us right now to explain it to everyone that was with her at the St. Louis Zoo. It was her and Dad, my aunt and my cousin, and her friend (my other mother) and her family.  For me, it was just like someone rubbing mother's day in my face. They were celebrating the wonderful day, talking to me the odd girl out, wondering what all the details were in the "other way" to become a mom on mother's day.  I explained it to her, but as each word came out of my mouth, I became more and more upset. I really didn't want to talk about it on this particular day.

He will be with you also, all the way, that faithful God. Every morning when you awaken to the old and tolerable pain, at every mile of the hot uphill dusty road of tiring duty, on to the judgment seat, the same Christ there as ever, still loving you, still sufficient for you, even then. And then, on through all eternity.
-- Thomas Kempis

So that is why it is so tough for me to wake up on mother's day. I don't want to even get out of bed and face the day.  It's very depressing to me. I ask myself sometimes questions that I know are not worth asking, that I know have no answers. I want to know why? Why does everyone around me seem to be having babies and getting pregnant, and we keep waiting and waiting--for six whole years!  I feel like we could have had a six year old daughter by now. We have such open preferences, Jim has a great flexible, good paying job. I'm a nurse, even though I stay home now. I ask God all the time, why we are being punished. I know he's not punishing us. I know that it just hasn't been the right time for us. I know that all the other times in our lives wouldn't have worked out with my illnesses, with our moving around all the time, etc. But I can't help but question things because, well, I'm human, and that's what we do.  I have gotten better at allowing myself to "let go and let God," but it is difficult.  Everyday is a learning experience for me. I have to remind myself each morning and each night, that I'm not in control of this adoption. These scripture passages and quotes I have even attached to my email signature. It reminds me that I am not in control and that God is.

God is in Control of My Adoption. 

Fear not I am with you… Isaiah 41:10 

Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord. Psalm 27:14

We have chosen adoption as our option.  

God will show us the way.

So today was a particularly tough struggle. I think it is a combination of my recovery from a shoulder replacement, the fact that I am due for my Remicade infusion in 4 days, it's mother's day, I made the mistake of looking at everyone's mother's day wishes on facebook, so many of my friends either just had babies in the last year or are due in the next year, the waiting part of the adoption is so hard, no one in my family has donated to my Walk Team (I take this personally), and I'm trapped at home because I can't drive yet. The recovery from my shoulder has been easier than I thought it would be in some ways and harder than I thought in other ways. The joint pain is gone completely because it was replaced, but I still have a lot of muscle pain that I wasn't expecting. I didn't have that with my hip replacement. The skin around the incision gets very taut and stiff. I have to pull on it every so often to stretch the skin. It's weird. I'm not sure if it has anything to do with my connective tissue disease or not.  I feel like my range of motion is really good. It is already better than my other shoulder. I still have a long road ahead of me, I fear though.  Always, by the week before my Remicade infusion, my body is ready for it! I already said it; I hate mother's day!  There are too many reminders that I have no children, that my life keeps being put on pause while everyone else's is on play, and that it is yet another year that my family (including my own mother) is in complete denial that I have a chronic illness or that I had a serious surgery.  Being stuck at home makes me think about all of this stuff more and more. I'm not so sure it's all that bad though. It could be worse, I guess, if I began to sink deeper and deeper into a depression. But for me, I think it is helping me to see things as they truly are.  I just would like to be able to escape them once in a while, which is a bit impossible right now.

Jim knows how hard this day is for me so he got me a card from our furkids and took me out to get a haircut. I'm gonna do my eyebrows later.  I know my furkids are very thankful for their mommy!

I'm trying not to be so negative, but I feel like with everything that I've been dealt in this lifetime, sometimes I deserve to vent every once in a while!  Ya know the Arthritis Walk is coming up on May 22nd in Atlanta. I have been doing this fundraising thing for a couple of months now on facebook and with email.  I raised $275, which isn't bad considering that I can't even leave my house. The thing is that all these other people send emails out to their family and friends, and they get donations from their family right away because they're family. I have not had one single family member donate to my walk team. I have had one really close friend donate that I've known for 10 years, a friend that I have recently gotten close to in the last 2 years, a couple of friends from high school (which was let's just say a long time ago), a friend that I really hadn't seen since college, someone that works with my husband and the sister-in-law of a friend of my mom's.  That is quite a list! Can you believe that all of these people donated before my family? Now I know that it's not very good economic times, but you can't tell me that for a family member, you couldn't find something in your life you could give up to give even 10 bucks. You could not go out to dinner once or twice and eat at home instead and donate what you saved to the Walk. My friend here in GA told me that she didn't have the money to donate. I told her that was OK. I said we would love to have her walk with us. She also has arthritis, so for us, we are walking for her too, not just me.  I would have loved for her to walk with us, and even if she couldn't donate, to know that she supported the walk in that way would have been enough for me.  She replied to me and said that she couldn't walk this year. She said that she supports our team and hoped we did well and had a great day at the walk.  How wonderful is that!  Not one of my family members said that to me!  She actually even ended up donating anyway. She sent me an email that she did her bills for the month and had money left over so she donated to our team.  That was so nice, and I will never forget that loving gesture!  

I do admire all you mothers out there; don't misunderstand this post. Mothers have the hardest job in the world. They have the longest hours, the lowest pay rate, and the least time off.  Their children and spouses often forget to tell them how much they appreciate them, so they work without incentives as well. But, they have the most rewarding job in the world. Once you sign on to this job, you will never want to quit! God Bless all the mothers and mothers-to-be!