Dancing with My Disabilities!

Title: Dancing with My Disabilities! 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, dances hip hop, performs, teaches dance to children of all ages and abilities, teaches belly dance fitness classes to adult women, teaches chair belly dance movement classes to people with mobility issues and disabilities, and takes a Pure Barre class as well! I still have pain, but I want to blog about how I have fun too! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain and being a mom to a 13-year-old son. I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, axial spondylitis, Sjogren's, fibromyalgia, hEDS, POTS, MCAS, vascular/ocular/hemiplegic migraines, pseudotumor cerebri, trigeminal neuralgia, occipital neuralgia, endometriosis, and chronic shingles. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Fourteen years ago, my spine orthopedic surgeon told me I had a small amount of inflammatory arthritis in my SI joint. The question was if the spinal involvement was due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? Now, they have an updated term, Axial Spondylitis, which fits my symptoms and diagnostic proof. 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 gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012, and I began belly dancing two years prior to my right hip replacement surgery. Yes that's correct! I began belly dancing in 2010, just after my shoulder replacement, before my son was born. I performed for the first time in 2012, five days prior to my right hip replacement surgery. 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 dancing, teaching, and performing! I began dancing with a troupe in February of 2014, Seshambeh Dance Company. I now take a Pure Barre class on Monday mornings, teach ballet, tap, and creative movement on Monday evenings to children of all ages and abilities, take a hip hop class with all adult women on Tuesdays and Wednesdays, teach a belly dance fitness class on Thursdays to all adult women, and teach a chair belly dance movement class to people with mobility issues and disabilities as often as I possibly can. Join me in my journey! At times, I take 16 to 20 pills a day. I give myself an injection each week on Fridays for my autoimmune/autoinflammatory arthritis diseases. Just when one thing is doing better, something else goes downhill! My attitude, however, is always going uphill! I am 49 years old, have been married for 24 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!

Blog Title: Dancing with My Disablities!

Formerly Now Read My HIPS, and before that, 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.

Dancing with My Disabilities

Dancing with My Disabilities
Asmara "Beautiful Butterfly"

Blog with Integrity

BlogWithIntegrity.com
Powered By Blogger

Monday, September 20, 2010

OMG! You're Gonna Stick That Needle Where?


The theme of the 13th Chronic Babe's Blog Carnival is: how do you handle a crisis? There are always times when things go terribly wrong with your health or a personal issue no matter how hard you try to take care of yourself. In this blog carnival, we are going to blog about how we prepare for such turn of events, how we cope in the middle of everything, and how we recover from it.

A crisis is a crucial or decisive point or situation; a turning point, an unstable condition, involving an impending abrupt or decisive change, a sudden change in the course of a disease or illness, toward either improvement or deterioration, an emotionally stressful event or traumatic change in a person's life, a point when a conflict reaches its highest tension and must be resolved. Synonyms for crisis are: crossroad, head, juncture, pass.

This is a very easy topic for me because I'm in somewhat of a crisis right now with my health. I was doing really well, and had begun to go to the gym to an aqua aerobics class 3 times a week, swim, and picked up a dance/movement class called Nia. I have also been doing beginner's yoga/pilates, light aerobics, and light weight training at home with workout videos. I really was really great--well for me; it's all relative. And just as quickly as I began feeling well and taking advantage of it, I started feeling tired, fatigued and having pain and stiffness. Yes, it's true; I had begun to have a flare two weeks ago, and I haven't hit the upward swing yet.

For me, I can live with the pain, but the fatigue is killing me. When I wake up in the morning, which is bright and early--about 6:30 or 7:30 a.m.--I have so much fatigue that I literally cannot physically get myself out of bed for four to six hours. That is a lot of time that I am losing each day, which is adding extra stress to my life. Of course, this isn't anything that unusual for me. I tend to have ups and downs all the time with my many chronic diseases. I just have to take it a little slower and easier for a while, and slowly increase what I do each day until I am back to my normal activity schedule.  But for some reason, this time around, I have had a flare with my fibromyalgia, sjogren's, and psoriatic arthritis. To top it off, I only have my period every three months, and this is the month that I will have my period, so I am also PMSing! I have psoriasis on my scalp, I am having muscle spasms, fatigue, bowel and bladder spasms, headaches/migraines, forgetfulness and confusion, and extremely dry mouth and eyes. I ended up getting a new prescription steroid foam for my scalp. I am on a new medication for my fibromyalgia--Savella. I began taking a migraine medication again--Topamax. I had to go to my eye doctor because of scleritis. I had silicone tear duct plugs placed in my eyes two days ago to help to keep what little tear production I have on the surface of my eyes.

Basically, for me, I have to always anticipate that a crisis with my health could be awaiting me around the next corner. It is one of the main reasons why I cannot go back to work because I could need another joint replacement at any moment. After all, that is how this whole blogging thing got started in the first place. I had my right shoulder replaced in March, and although I knew that both shoulders were in extremely bad shape, I would have never thought that my shoulder would collapse ahead of my other hip or one of my knees. And yet, it did. If I had taken a job here in Atlanta, I would have had to quit by now, and we hadn't even been here four years.  So as you can see, planning and foreshadowing what could and will happen next is the only way that I can live my life. So I have a doctor for every single part of my body. I plan trips accordingly. I make sure that I get my Remicade infusion just before a trip so I have more energy. I make sure that I get all my prescriptions filled before I leave to go out of town. I check out every new symptom immediately, and everything that has changed as soon as possible even if I think it might not be anything at all.

This is important because with my eyes for example, I made an appointment with my cornea specialist when I felt like I was getting a sore on my cornea. I have a history of uveitis, iritis and scleritis because of the sjogren's and the psoriatic arthritis. My eyes have been especially dry lately, and I have had to use not only the Restasis twice a day, but also artificial tears during the day and eye ointment to lubricate my eyes at night. Well since May, they have been exceptionally dry, but in the last couple weeks, they have been scratchy, sore, the vision was a bit blurry and even looked as though they had a spot on each one of their white areas. So I felt it was time to see the doctor. It turned out that they were much drier than they were previously in May. They did have a spot on each eye in the sclera, or white part, and the doctor ended up placing silicone tear duct plugs in each eye right there in the office chair. I didn't know they did it right there. She came back in the exam room with a tray, gloves and a needle and the instrument to place the plugs. I said "you're gonna put that needle where?" She actually put a needle into the tear duct to numb it and then placed the plug into the tiny tear duct in the right eye, and then the left eye. I WAS SCARED OUT OF MY MIND! I was at the appointment all by myself, and at that moment, I wished that Jim was there to hold my hand. I kept thinking, "what if she slips?" It went without any problems. She told me that if this didn't work, they would have to place a specially designed contact to cover the white part of my eye only to keep it moist, or to take the serum from my blood and use it as my own natural tears to keep my eyes lubricated, or the last resort is a cornea transplant if all else fails. For now, I am using my Restasis four times a day instead of two, artificial tears and gel tears during the day, as well as the eye ointment to lubricate my eyes while I sleep. I need to wear large sunglasses to keep the wind and sun out of my eyes and avoid breezes--stay away from fans and vents. It's scary stuff, and I'm not even sure that what's been done so far is helping.

I believe that being ahead of the game, knowing that a flare or anything else unexpected could be awaiting around any corner up ahead, is the only way to live my life. I keep a journal, and write everything in it about how I feel that day--pain, fatigue, and symptoms. I usually can see a pattern just before all hell breaks loose. I did notice that at first I was able to exercise 30 to 60 minutes 5 days a week with no problems except my normal pain issues. I began eating better and going to bed at a more reasonable time. So the exercise caused me to be more healthy in other aspects in my life, and in turn I felt more healthy, so I exercised even more. But then I began to slow down, I was able to notice the fatigue first in my journal, so I took it easy on the exercise, and I took some of it out for the week so that I wasn't overdoing it. Then I noticed that my sleep pattern got messed up again, which caused me to have more pain, and then which in turn made me begin to start eating at odd hours. It is a never-ending circle of events.

Hopefully, if we can get the scleritis and dry eye situation under control, I think that I am on my way out of this crisis though. Today, even on a methotrexate day, I played kickball, and yesterday was my aqua aerobics class. So I was able to do a couple days of exercise in a row, and I'm getting my blog post finished on time--well let's hope--for the blog carnival!

Monday, August 23, 2010

Getting Crafty With My Arthritis!

The next edition of ChronicBabe Blog Carnival is live on August 24, 2010, and the theme is Arts & Crafts. It is all about how you design creative idea to make life easier when you have pain and joint problems.








I have to say that as far as arts and crafts go, I'm not all that clever or creative, but when you have arthritis and other pain conditions like I have, sometimes you realize that creativity often presents itself when it comes to necessity.


I think that my most creative invention ever was my Intuition razor extention. When I had my hip replaced in 2003, I relied on my hubby to shave my legs, help me with taking a shower, and even washing my hair when I couldn't walk the steps up to the shower.  When I was finally able to use the shower, and I knew that the hubby really didn't want to shave my legs anymore (after all, he had to sit on the floor in our one-person shower stall with the water spraying him in the face, while he shaved my legs), I had to think of a clever way to shave my own legs without bending over to do so. I ended up using my Intuition razor and the long handle to my shower sponge. I cut the sponge off the handle, and I attached the handle to my Intuition razor with 5 hair rubberbands. It worked out great. I do not have it anymore to show you my creative invention, so the next time I make one, I'll be sure to take pics!


I mentioned that the hubby had to also help me wash my hair when there was no way for me to go up the steps to get to our shower.  We tried several different ways to wash my hair,--in the kitchen sink, in the half-bath sink--but the best way to do it was to take a water basin that you use to wash dishes. Put some warm tapwater in it to begin. I layed on my back with my head off the sofabed. The hubby used a big plastic cup and filled it with some of the warm water in the basin, and he carefully poured it over my head. Then he added the shampoo to my hair and rinsed it the same way that he wet my hair to begin. Then he conditioned it and rinsed again with the cup. It worked wonders! They do sell hair washing basins and hand-held sprayers, but they can cost a fortune. This was an inexpensive way to have your hubby or significant other or caretaker wash your hair with no fuss!


I have found that washing your dishes can be really hard when you have arthritis in your hands. The dishes slip out and slide out of your hands! I found that the rubber mat that you put in your tub works great in your kitchen sink. The rubber mat keeps the dishes from slipping in the shiny sink, and then you don't have to worry about them sliding out of your hands and spill water all over or even break the dish!

When making my bed, I use a pizza paddle to tuck in the sheets! This is a great idea if you have trouble with your hands and fingers trying to tuck sheets in by hand. It can be hard and very painful, but the pizza paddle helps tremendously!

Sometimes using a wash cloth or spongy or scrubby can be difficult to hold onto on really bad painful days. I like to use a wash mitt. You don't have to grasp anything then, so if your hands hurt badly, you won't have to hold onto anything, just wear the mitt. They are easy to make with old towels and a sewing machine!

I do have a shower chair from when I had my hip replaced, but it is big and bulky so we have it in storage. I do find that there are some very bad pain days where I cannot sit all the way down in the tub, and I am too fatigued to even stand for a quick shower. I use an all-weather garden chair in the shower. It is a lot less huge and easier to handle.

I keep a gripper in the tub/shower next to the faucet knobs. On some days, the pain is so bad, I cannot even turn the water on or adjust the temperature. I use a gripper to grasp the knobs and make it easier to turn. I just use the same gripper that I use in the kitchen for opening jars. I have like 3 of them, so I keep the one in the kitchen, one in my bathroom, and another in the guest bathroom.

I use a toothpaste squeezer device to squeeze out the toothpaste from the bottom of the tube. I cannot squeeze the tube with my hands because it is hard to make a fist. You can find them at the dollar store even!

If you have a regular toothbrush, try putting a large foam hair roller on it to make it bigger and fatter to hold easier--you can do this with eating utensils too. Otherwise, if you get an electric or battery-operated toothbrush, they are bigger and fatter and easy to grasp as well. For flossing, I use the reach flosser. It has a handle to hold the floss, and it makes it easier to hold than those tiny dental floss strings in your hand.  You can also use a large foam hair roller on it as well. Use the same idea with your foam hair roller on anything with a handle like hairbrushes.


When it comes to filing your nails, it can be a lot easier if you take an emery board and glue it to a large sponge. You can more easily grasp the sponge than a tiny emery board. It is a lot easier on your hands!

Anything that is aerosol in a can--shave gel, hairspray, and even my olive oil that I use to coat pans--the lids can be difficult to take off and put on. I just keep them off all the time!

You can loop a scarf around certain handles to pull them open with your forarm instead of your hands and fingers.  A good example for this use is on the refrigerator, if you have those type of handles that you can tie a scarf around.

Keys can be hard to turn. Have your keys made with a large plastic handle that is easier to grip or put your key in a stiff sleeve to make it easier to turn.

You can put a laundry basket in your car attached to the floor with electrical tape. This way, when you have groceries, you can place them in the basket. They will be easier to reach, and you don't have to worry about bags falling over in the car.

I hope my ideas and creativity helps you out! Just remember, if something is hard for you, try to think of a better way of doing it. Let those creative juices flow!!!


Sunday, August 15, 2010

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!!!

Wednesday, August 4, 2010

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!

Sunday, July 25, 2010

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!

Tuesday, July 20, 2010

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?

                                         


Thursday, July 15, 2010

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.  

2012

2012
Performance 5 days before my Hip Replacement Surgery!

2012

2012
Performance 5 Days Prior to my Hip Replacement Surgery.

Belly Dance

Belly Dance
Before the Performance 5/6/12
Watch live streaming video from arthritisfoundation at livestream.com