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

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Thursday, February 11, 2010

Everything You Have to Go through Just to Get through The Day!


So as I sit at the infusion center at the hospital, in the basement besides, next to chemo patients and others like me. I'm generally the youngest person in here even though being 35 doesn't always feel so you. But people always say, "you're so young to have arthritis." This can be followed by an endearing "honey" or "dear" or I've even heard "darling". Well, I live in the South first of all, and secondly, a lot of people are a lot older than me that say this, and those seem to be the words that come off their tongues. Also, I find that people assume that I'm younger than I am chronologically. And we all know that sometimes that's a compliment, and other times it can be upsetting. Many times it depends on our mood at the time that people are making these comments.

So back to the infusion center...Every four weeks I prepare the day before by taking my prednisone, a pretty hefty dose to boot--20 mg three times that day. I also take 2 Zyrtec the night before I go for my infusion. I make sure the car has a full tank of gas, so my husband can drive me and then drive back home and then take the car to work and have the car for the day that day. I also make sure to get to the ATM to get cab fare because I won't be driving myself home afterward. We leave our home around 7:15 or 7:20 a.m. and head for the hospital. I make sure that my arms are warm and that I'm well hydrated because I'm a hard stick. I have been known around there to have been stuck up to EIGHT TIMES! Don't let this deter you from going on biologics if you have some type of auto-immune or inflammatory condition that requires it. It is worth it even after that. I have been on this particular biologic for a little over two years now, and am feeling much better on it, but after about 6 months on it, I had a reaction in the infusion center that was made up of hives, tightness in the chest, coughing, and stomach pains. They make sure now, and basically it is in my hands to do the home pre-treatment, to pre-treat with every infusion. Not only do I take my meds at home for pre-treatment, but when I arrive, they order my I.V. meds from the pharmacy, and 15 minutes before starting, push intraveniously 25 milligrams of Benadryl and give me 500 milligrams of Tylenol orally as well. On the day of my reaction, they stopped the infusion for 20 minutes and gave me another 25 milligrams of Benadryl by I.V. push, waited for the symptoms to subside, and decreased the speed of the infusion of my biologic, which I haven't yet mentioned as Remicade. So now, I must only get my Remicade infused over 3 hours, even though the FDA has approved the infusion for over 1 hour. It is just too risky to increase the speed.

So when I am finished with the I.V., and the nurse removes the I.V. and tubing, I am free to go. I walk to the main hospital through 2 other buildings and call the cab. He (I'm not being sexist; I've just never had a woman pick me up yet)usually picks me up within 10 to 30 minutes as I get more and more tired and groggy from all the drugs. I climb slowly into the cab and set out to my home. I pay the driver, go in, take the dogs out, and collapse on the couch for several hours. When I wake up, I generally take more Benadryl because I feel a bit itchy. I do some things around the house, and pass out on the couch again.

It seems like so much to go through doesn't it?

2 comments:

Anonymous said...

Hey Girl,
Thinking of you today as you go through this! Next time, let me know when you are going and if I am feeling well enough, I will come and pick you up, bring you home, walk the fur kids and tuck you in! I would LOVE to do that for you!
Peaceful blessings and healing light,
Susan

Dana Asmara Morningstar-Marton said...

Susan, I wouldn't expect you to come all the way over here to pick me up and take me home. That is asking way too much. Besides, I wouldn't have funny taxi cab driver stories to tell anymore. I know you would Love to do that for me. That is the kind of person you are. I love you for that. Stay that way! I would rather you come visit me when I'm home recovering from surgery. We could watch movies and eat popcorn, or nachos or something like that. It could be like a sleep over in the middle of the day! Not many people can do that w/ me b/c they have to go to work. See, things do happen for a reason! Blessings and healing to you also, Dana

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