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"

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Tuesday, March 29, 2011

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

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



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

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


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


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


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


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


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


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


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

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



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

Love,
Dana



2 comments:

Anonymous said...

I hope that Team Dana is soon back on track! Going cold turkey is tough; I'm sending you good thoughts and healing vibes as you go through the process.

I hope that your body, mind, and soul continue the dialogue you've begun. With your strength of spirit and will, I'm sure the conversation will continue, with all parties sharing equally in the discussion.

The weight gain could be Savella-related, too. Weight gain wasn't initially listed as a side effect of Lyrica, but it is now (and I gained weight on it.)

With your permission, I'd like to post a link to your conversation with your body on my blog. I'd like to share the various conversations that folks have been having with their bodies.

Thanks for sharing!

Dana Asmara Morningstar-Marton said...

Fantastic, post away!

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