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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Monday, January 23, 2012

In The Mirror...About to Break...Worthy...Not This Disease...I Am Dance!

This satisfies the MOWer's blog topic: self-esteem!

When I first began belly dance class, it was at night in the neighboring apartment complex. I had never attempted it before. I had my shoulder replaced in March 2010 and began belly dancing in August of that year. It was difficult for me at the time. I can't lie. I had already finished my physical therapy but still did not have full range of motion in my right shoulder. I didn't have a lot of flexibility everywhere else~back, neck, hips, and legs. I also didn't have a lot of self-esteem. If I was going to go back to dancing, I was going to have to be that same person that held nothing back and just let loose. If I couldn't be that person, then I was going to have a hard time dancing. I also knew if I couldn't allow myself to dance again, that would be like a death sentence.

I only went to the apartment complex belly dance class 4 times. Then I thought it just wasn't for me. I felt self-conscious and as if I just couldn't keep up. I thought for sure everyone was watching me and wondering what was wrong with me. I just knew that I stuck out as someone that couldn't dance because there was "something wrong" with me. I felt every one's eyes looking me over, up and down, and through me. I couldn't go back...I failed!

A couple months later, a bunch of people went out for my birthday. One person that works with my hubby, who happens to be a long-time belly dancer, gave me a gift certificate for class with the same dance instructor that was at the apartment complex but at a dance studio. I thought I should give it another try...

Meanwhile, we adopted our son Michael. We brought him home, and we got settled. Then I returned to belly dancing once more to give it another try. I felt better about it this time for some reason. I was stronger. My right shoulder's range of motion was back to normal, and I was feeling pretty good physically. I began in February of 2011 when Mick was only 2 months old. I started in the Saturday Beginner Class. At first, it was a little hard, but not as hard as it once was when I was going at night to the apartment complex classes. I felt like maybe I could catch on faster now that I was physically feeling better. By the end of that first class, I had a confidence that I had not had in soooooooo long! I really needed that class! I had my friend Ang come visit from out of town, and she joined us for one class to learn the very end to our dance. She caught on extremely quickly, and she did an awesome job especially considering that she had never taken a belly dance class ever. At the end of that class, I took one more Saturday Beginner Class, and then was moved up to the Intermediate-Advanced Class! 

I couldn't believe it! By the time I left for my brother's wedding in April, 2011, I had already completed my first Intermediate-Advanced Class! I had no problems keeping up either, which made it so much more enjoyable and worthwhile. I began taking both the Beginner and Intermediate-Advanced Classes together so that I could take more than one class at the same time. I fell in love with belly dance!!!!

Just last weekend (January 15th), our belly dance studio had a performance. We were asked to get together with other people in our class in November to perform a dance or by our self to perform a solo dance in the show. I was asked by 5 different people to do a dance with them. Talk about a boost in your self-esteem! You know that when others ask you to dance with them, they appreciate your talent or else they would not ask you to dance with them. I was honored and excited to begin practicing. Of course, I was going to be out of town for a lot of the holiday season which meant that I would miss a lot of practice time, so I opted out of the January performance. I told everyone that I would love to dance with them in the spring performance in March or May.

The holiday season has come and gone so quickly. We returned from visiting family in St. Louis, and were ready to get back into our normal routine again. I had made an appointment with my hip orthopaedic surgeon way back in November to see him on January 4th. I had been having some problems with the right hip~clicking, sticking, popping, pain, grinding, and I feared that it was near total collapse.  My fears were actually made true when I was told that the right hip could collapse totally any moment now. I am continuing to belly dance though until I can no longer do it physically. I went to the performance eleven days after my news from my orthopaedic surgeon. I cheered on my fellow classmates. 

Two days later, I went to my belly cardio class, which is fast paced and super-charged fun! I danced my body and my heart out as if nothing was wrong with me physically. I told no one in my class about my hip. I just wanted to be "normal," to feel "normal," and to only have people look at me for how I danced because they liked my dancing! OH, I danced as though my life depended on it! I held my head up high and my shoulders back! I was so proud of myself! No one can make you have self-esteem, it is

The music began...I watched myself dancing in the mirror next to all the other women and young ladies in my class...I couldn't even tell...I don't think anyone could tell...I truly couldn't tell...I moved my hips, then my shoulders, and I could keep up with everyone in the class~old and young alike...No one even knew I was about to break...No one knew I was less than perfect...it looked as if I was afraid of no one or nothing...I gave the impression that I had so much spirit, brevity, courage, spunk...I obviously feel comfortable in my own skin...I know what I'm doing...This is so right!...I am worthy!...I am a dancer!...I am dance!...I am not this disease...it doesn't define me!...I am worth so much more!...


You don't wake up one morning and say, 'I will become a dancer.' 
You wake up one morning and realize you've been a dancer all your life,
And you say to yourself, 'I am a dancer.'
'I am dance.'

Friday, January 20, 2012

I Have The Best Friends Anyone Could Ask For...I Don't NEED Anything More!


This blog post will fulfill the the MOWer's blog carnival topic "NEED."  When I think about the word "need", I automatically think about the word "want" as well. Many people tend to interchange these two words as if they have the same meaning, and in fact, these two words are very different in meaning. The word "want" is defined as:
1. desire something: to feel a need or desire for something
"We want a new car."
2. wish something done: to desire to do something or that something be done
"He wants his steak well done."
3. miss something: to feel the lack of something
"After a week on the road, I want my own bed."
4. wish somebody to be present: to wish to see or speak to somebody
"Someone wants you at the door."
5. seek somebody as crime suspect: to seek somebody in connection with a crime ( usually passive )
"wanted for two felonies"
6. desire somebody sexually: to feel sexual desire for somebody ( informal )
So when you "want" something, you could replace the word "want" with any number of these words/phrases: desire, wish for, would like, feel like, crave, covet, yearn for, hanker after, be after, be looking for, hope for, aspire or fancy.

When you "need" someone or something, the definition changes:
1. transitive and intransitive verb require something: require something in order to have success or achieve a goal
"Do you need any money?"
2. be necessary: used to indicate that a course of action is desirable or necessary ( used in negative statements )
"You don't need to thank me; I'm happy to help whenever I can."
3. transitive and intransitive verb deserve something: to deserve something, especially as punishment ( informal )
"Those troops need to be shown who's boss."
4. intransitive verb to be essential: to be essential or necessary to something ( archaic )
Therefore when you "need" someone or something you can replace the word "need" with:  demand, require, call for, necessitate, take, have to, must, should or ought.

When I think of wants and needs, I think of a desire (want) to fill what's lacking or absent vs. something essential or necessary either to survival or something more basic, such as a requirement (need) to complete a recipe. 

So why am I going to such extremes to show you the difference between wants and NEEDS? Well I think it's important for everyone to know that food, air, water, love and shelter are needs and that candy, ice cream, shoes to match every outfit, and a designer purse are all WANTS.

In my life, just like in every one's life, I have a WANT list. Many people make the list around the holiday season for loved ones to know what to buy for them. I make my WANT list more so to realize that material things are nice to hope and wish for, but they are definitely not the most important things in this world. I put things on my WANT list like outfits for belly dance, velour jogging suits, I-PAD, smart phone, new shoes, hair accessories, new furniture, new TV, etc.


Now to take this in a little different direction...I went to my hip orthopaedic surgeon on Jan. 4th because I was having increased hip and groin pain. My right hip was sticking more when I went from the seated position to the standing position. I was extremely concerned because 8 1/2 years ago, this is what it felt like right before my left hip completely collapsed. It collapsed in August 2003 and was replaced December 22, 2003. I began to prepare myself for what the doctor was going to say, all the while hoping that he would end up telling me that it was still the same as it was in May of 2011.  Well, my fears were correct. It is just about to collapse. The hip is a ball-in-socket joint so the hip is able to move in a full circle inside the socket. For me, the socket is resting on the ball, which is already flattened (not round), and the ball has a crack all the way through it. Imagine what the pressure is like on that ball! With all that pressure and a crack all the way through, it does not take a genius to figure out that it could collapse at any moment!

When I found this out, I didn't freak out at all. I had prepared myself for this, and we knew this was going to happen sooner or later. I was prepared to an extent, but you just can't prepare yourself for that specific day to be told that you NEED to have your hip replaced as soon as possible. I WANTED it to be when my son Michael was old enough to feed, dress, and bathe himself, but perhaps that is asking too much. Ideally, we would be in a city with lots of family and all my friends to be able to jump in to help us out, but again, that just isn't in our cards. It would be super if after this hip replacement, I would not NEED anymore joint replacements. Sadly, I am still playing the waiting game with my left shoulder and both of my knees, not to mention that joint replacements do not last forever. They are also replaceable. My left hip is now 8 YEARS OLD! I was told it would only last about 10 years. OMG! I do not WANT to have a hip replacement done two years apart, even if they are on two different legs.

I WANT the surgery to go smoothly without complications~no problems with infection, placement, blood pressure, etc. I WANT to heal quickly. I WANT to be able to have physical therapy that restores my physical activity and range of motion to normal level. I WANT to heal in three months so that we won't have to hire someone to come into our home after my hubby goes back to work for the fall semester. I WANT this new hip to make both legs equal in size. I WANT to get rid of the pain. I WANT to be able to return to belly dancing relatively quickly after the hip replacement~told you I was a type A personality! I don't WANT to have to start all over again with walking, going up steps, driving, swimming, lifting my leg, bending my knee, sitting, standing, riding a stationary bike, then slowly lifting things, then going back to a normal day of cooking, cleaning, taking care of a baby (diapers, bathing, feeding, playing on the floor, chasing, carrying, etc.).

I NEED help with my son who is now 13 months old. This is what is giving me the most anxiety, however, we have it all planned and everything is in the works. I go in for surgery on May 10th, and my mother-in-law arrives here in town on May 8th. She is off work all the time on Tuesdays, Wednesdays and Thursdays so to come in town she will take her vacation days in chunks. She will start her days off May 11th through the 14th, then the 18th through the 21st, then the 25th through the 28th, and so on...She will be here for the majority of May and most importantly on my surgery day and while I'm in the hospital so my hubby can be with me in the hospital while she's with Michael. I will still NEED help in June, July and August. In June, my parents will figure out their schedules to come here. I have lined up others to come in the other months. In August, we will fly to St. Louis so my hubby can go to Memphis for a bachelor party. This way, I will have lots of family and friends to still help toward the end of my recovery. I have put Mick on a wait list for full time daycare for the summer months. If we struggle at all, we will hire a nanny to help with Mick's care. After May, I should be doing most of my own care myself except driving and bathing. I will still be unable to lift 10 pounds, so no lifting up Mick! That will be the challenge.

Anytime you have an illness or surgery that prevents you from taking care of yourself and others like you normally do, you are forced to rely on others. Although I have been through a hip replacement surgery before and a shoulder replacement as well (as a matter of fact, I have had 9 surgeries in all plus this one now). We have been away from family and old friends for 7 of these surgeries and have done OK by ourselves so far. The thing is that we have never had a child until now. So now we especially NEED the help of others for the sake of our son! Well, we have not had to even ask a single person for help.

I find it interesting, and mentioned this in my blogtalkradio show, that when you have really wonderful, true friends who know that you are in NEED of help, they tend to pass the word on to everyone they know that you are in NEED whether they know you or of you or not. They tell their friends, their friends' friends, their brothers, sisters, moms, dads, uncles, cousins, church members, members of their book club, people that serve them coffee, etc. Then all of a sudden, you are getting dinners from people that you think are coming out from under the rugs.  Well, they actually aren't coming out from under the rugs. These people are coming to help you, because of people that love you very much. They know you are in NEED because of these beautiful, loving people.

I must have the best friends anyone could ask for! I have had so many friends and people I hardly know or have never met until now offer to help us out during the surgery and after the surgery and even now since I am having difficulty with my range of motion and getting around. Thank you, Angela and Rob, Kelbi and Sam, Susan, Samantha, Samantha and Troy, Debbie, Sarah, Rachana, Grace...and family~Mary Lynn, Mom, Dad, Ricky, Beth, Debbie...and my online friends as well who cannot help in person but in spirit and with support~Cookie, Brenna, Wendy...oh gosh there are so many of you, I could go on and on...if your name isn't on here it is written on my heart! You must know that with friends like you all I don't NEED anything more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I truly love you all! Isn't it wonderful to know you are NEEDED? Guess what? You are also WANTED! I chose you all as my friends, so you all are NEEDED and WANTED, both such great honors!




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
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