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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Friday, June 24, 2011

My Bestest Friends!






When I found out that the next blog carnival with Chronic Babe was supposed to be all about my Best Friend, my first emotion was pure happiness, followed by excitement, and then anxiety. OK, you may be wondering why anxiety. Well...I can't just pick one!!! I have narrowed it down to Ang, Kelbi, Susan and Carlene. Each one of these people have brought so much to my life, have entered my life at different times,--perfect times actually--and each one of them is as strong of a woman (or Babe) as the next one!!!!


I will begin with Ang. I have known Ang since we were 6 years old. We have a bond that starts with both of us being Italian and Scorpios with birthdays in November. We both have always loved dancing and enjoyed the same music. We even just celebrated this likeness this week when we attended the New Kids On The Block concert. Yes, we are 36 years old! Don't judge!!! We had the time of our lives! We went out to dinner, split a bottle of wine--which for me is a rarity in and of itself since I don't drink alcohol because of my meds. We reminisced about being young and attending the NKOTB concerts when we were young. Ang is the type of friend that I can have a no-holds barred kind of fun with. She is also the kind of friend I can trust my deepest darkest secrets with. She knows me better than my own husband of 11 years. She knows how to bring me out of my lowest points and how to make me laugh until I pee my pants! She supports me when I fear no one else will. I can text her at 3 a.m. I can get on a plane and fly to her home and stay with her for a day, a week or a month because I need a friend, because I want to share my excitement, because I need a shoulder to lean on, or just because I want to take a trip somewhere fun--in a house with 2 kids to play with during the day and someone to watch scary movies with at night!


Ang is a special person because she truly listens when I talk to her. She doesn't pretend. She doesn't act like she understands if she doesn't really. She truly understands. She may not go through the same type of health issues that I am and have, but she has had her fair share. She does have some pain issues that I'm aware of. I know she has migraines that she suffers from often. She never complains about them. She may say she has one, but never whines or burdens anyone with her pain. She wears hearing aids because she lost her hearing due to Scarlet Fever when she was around a year old. I have never considered her to be different from anyone because she wears the hearing aids. She has never asked for or wanted to be treated any different either.


Ang also lost both of her parents by the time she was 30.This is a loss I cannot even imagine, a pain I have never had to experience. She has had pain in her life too, just not the same pain that I have endured. So she has taken what she has went through, and just as I have done with my painful experiences, has become an even more compassionate and understanding person. Pain in any form can allow you to enjoy life more, to hug your children tighter, kiss your husband one more time each day, and notice how bright the sun is and just how beautiful even rain can be (especially when you are running up steps all dressed up in heels going to the NKOTB concert~something only Ang and myself would understand!)

Ang and her hubby Rob have two children, gorgeous children, a boy and a girl! They have raised them well, and they will be wonderful adults who will know to treat everyone with respect, even those who have challenges. They don't see people who are different from them as being bad or wrong. Great job, Ang and Rob! When we were in the process of adopting Michael, my husband and I decided to ask Ang and her hubby Rob to be the legal guardians to Michael if, God forbid, anything were to happen to us. Now of course, I see Ang with Michael, I see a Mommy! I see Rob with Michael; I see a Daddy! I really hate the term " legal guardian." I would hope if something happened to us, Michael would call them Mommy and Daddy. That is how good of a friend she is to me! She is also going to be Michael's Godmother in a couple days when he is baptized. Michael is a very lucky little boy.


Kelbi, Susan and Carlene all share my pain. I mean they all have a form of arthritis and fibromyalgia. I am able to call or email them any time of the day to talk about anything. It is especially wonderful to have friends who share something like this because they understand exactly what it's like to not be able to get out of bed, to cancel appointments, to feel so fatigued you can't even wash a bowl in the sink or stand to take a shower. They just "get me." It is sad that what brought Carlene and Kelbi to me was the Arthritis Foundation. If it weren't for our disabling conditions and wanting to help other young adults and other people learn to help themselves to deal with the pain and fatigue, we may have never met. If I didn't have arthritis, I wouldn't have been seeing a counselor, and I wouldn't have been introduced to Susan. 

Kelbi is considered "Aunt Kelbi" to Michael. She has not only been a wonderful support to me when I needed to vent my frustrations with these awful chronic diseases, a fantastic knowledge base when I had questions about certain treatments that I was considering, and a smiling face when she comes over with lunch and a beautiful gift for Michael. She is the best person to go do things with like Crystal Bowl Meditation. I can't think of anyone I would rather go to that with!!! I have to give her a call to do that again sometime soon, actually. I am due for some Bowl Meditation about now!! She also is a talented photographer who helped us with our photo album for the adoption of Michael. She is a Reiki Master, which is just another connection we have since I am also an energy healer. The universe has somehow brought us together.  


Susan was introduced to me by my counselor. We were both introduced to an energy healer instructor Beth. We learned how to better direct our energy and use it to help others. We began to learn that we are very much "soul sisters." She and I both have spondyloarthropathies. We both have fibromyalgia. We both are learning about energy and its use to better others and the world around us. We both rescue dogs. She is also known as "Aunt Susan" to Michael. She lives a little drive away from us, but she makes the drive to come see her "nephew" and me. Susan has dealt with the pain of arthritis, fibromyalgia as well as other pain in her past and divorce. She is a great friend to go to lunch, get cookies at our fave place, try new places around town, chat online, by phone, and she always saves me on my Blog Talk Radio show by being the only caller. She is a great secret keeper!


I met Carlene when my husband was a visiting professor. I decided to keep myself busy and took a took a class to be an instructor for a self-help class for people with arthritis with the Arthritis Foundations. That is the first time I spoke to Carlene. She is a person who has not only had pain in her life from arthritis and fibromyalgia as well as infertility and a painful childhood, marriage and now a divorce. She has given me strength through her compassion, understanding, courage and hard work. She went back to school after getting married and having a family (a wonderful son). As she learned how to stand on her own two feet and that she did not need a husband to make it in the world, she got a divorce and continued through her schooling. She is studying mental health. She would love to help others with chronic disease/pain conditions. This has made me want to do more. So I have begun to write a book and have started my Blog Talk Radio show. She is a fantastic Mommy. Her son will grow up with such respect for women and people with disabilities and challenges because of Carlene~because he has lived this life with a mother who has denied him nothing although she cannot always do everything the same way others can.

So in summary, I have four Bestest Friends: Ang, Kelbi, Susan and Carlene. They each have entered my life at different times, in different ways, for different reasons~all staying to support me, love me, care for me, understand me, and always be there for me!!! Thank you so much. What would I ever do, where would I ever be, and how could I ever go on without you all?



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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