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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Sunday, May 30, 2010

What I Like To Do To Help Myself When I'm Having A Bad Day...

"Welcome to our fifth edition of ChronicBabe Carnival! We're talking about our favorite self-care tools and techniques. ChronicBabes want to be AWAP (As Well As Possible). But sometimes chronic illness gets in the way and we forget to take care of ourselves. Or we get stuck in survival mode. Self-care can sometimes be a challenge. The bloggers of ChronicBabe Carnival #5 are sharing some seriously useful self-care tools and techniques. Take a look!"



This is an interesting topic because I've had a few bad days--weeks since the week leading up to the Arthritis Walk Atlanta up until now.  It took so much energy to prepare for the day, then finally getting to the day, and actually walking a mile, was a lot more than my body could really sustain.  I can't even believe that I walked the mile without my cane. I haven't been using it since my right shoulder was replaced because (even though I used it in the other hand) it makes it impossible to carry anything. I can't hold anything yet with my arm that had the shoulder replacement, and when you put a cane in the other hand, well, you might as well forget it--you just can't carry anything. I did find a purse/fanny pack that was actually stylish. I can use that!

So then my mother-in-law came into town, and we went to Zoo Atlanta. Although it is a small zoo, it was 90 degrees outside, humid, and I still was fatigued, exhausted and in a lot of pain since the Walk. Also, it may be a small zoo, but it is all hills!

After she left, I just collapsed! I decided that since my orthopaedic surgeon told me that I can go back to the pool at the gym to move my arm around, that would be a great idea to do on Saturday for the long weekend. I went there for 45 minutes while my husband was working out. I started in the hot tub just moving my arm all around. Then I moved to the pool. I can't swim yet because I can't move my arms fast enough to keep afloat, so I walked back and forth, moving my arms in the water with some resistance. It didn't seem hard, and I really didn't feel tired when I finished. Oh, but when I got home, I hurt so bad! I actually took 3 pain pills that day! I went to bed and slept until 10 o'clock the next day. Then on Sunday before Memorial Day, I slept all day long; I just couldn't keep my eyes open! I looked at the clock and it was 11, then 2pm, then 4pm, then Jim was coming home from work and it was almost 6pm!

So this leads to what I can do to help myself when I'm having a bad day...

Obviously, one of the best things I can do for myself is get some well-deserved sleep. It's amazing; I can't sleep worth a damn at night, but when I need to, I'll sleep my whole day away on the couch. It doesn't seem to make much sense to healthy people, but I'll bet you chronics out there get it!  Also, I always feel better when I can easily grab something to eat that is healthy. I really enjoy Kashi. They have good granola bars and other snack foods as well as frozen foods.  It is hard to have to cook when you don't feel well.  I really love to cook, but when I'm so fatigued that I can't stand longer than 5 to 10 minutes at a time, cooking is off the list.  So then there are warm baths...I love a warm bath. Sometimes I'll sprinkle some epsom salts in there. I love natural shampoos and conditioners and body washes. Right now I'm using Tea Tree Oil shampoo and conditioner and for my body wash--pomegranate acai berry wash. I also use Tea Tree Oil in a dish and light a candle under it to burn the oil. I love to use aromatherapy. I find it relaxing. It helps me to feel better mentally as well as physically. I try to find time to get a full body massage or a foot massage or even a pedicure. It's nice to be self-endulgent sometimes!

I like to read and write--journaling is very therapeutic, and actually that is how I began blogging in the first place. I enjoy nature--God gave it to us, and I believe we should take advantage of it more when we are able to. I try to walk the dogs more often. On bad days, I walk them one at a time, and I take them on shorter, more frequent walks instead of longer less frequent walks. Music can be relaxing if you choose the right kind, but of course, it also depends on your likes and dislikes as well. I prefer country music and classical when I'm having a bad day. Anything any louder makes my head hurt more.

I have sparked an interest in energy healing. I have gone to an energy healer and looked into other healing arts. I am a very spiritual person, and I firmly believe that when that person places her hand on or above me, God is working through her. Miraculously, I can feel God's energy pulsing through my body and literally "healing" my pain. I would recommend it highly. The down side is that it is not covered by insurance usually and can become expensive. Try it once and you'll see! Prayer and meditation can also work very well. Also, try to use healing energy on yourself. It is amazing!

I also find that being able to exercise at the gym, for me it's in the pool, is really great if I'm able to. Since I'm unable to actually swim right now, just being in the water is therapeutic to me...

Connecting with others is important to me because I tend to go inside myself on bad days. I withdraw from the world. I like to be able to go online and connect with my different network communities, blog communities, and email friends and family. I also like to be able to pick up the phone and talk to people if I need the company. What I've found interesting is that when I'm having bad days, I'm drawn more to those who are sick like me, but when I feel good (it's all relative) I am able to communicate with anyone sick or not. It seems like it's harder to keep my attention with those that don't understand because they don't live it. And of course, let's face it, even good days, are bad days for those that are not sick, so how can we even explain that our world is collapsing around us? It is just easier to be around those who really get it on those really bad days.

I love to just relax with my furkids on the couch and get all caught up with the Lifetime Movie Network! That is my ultimate bad day revival kit. Take a warm bath, a walk with nature and the furkids. Relax with my favorite book, sleep for hours, awake with my laptop to catch up with friends, grab quick snacks all day long, and then give an old friend a call on the phone. If she stops by, that would make it even better!

4 comments:

Migrainista said...

Very insightful. I also find it difficult to do much communicating with "well" people when I'm having real bad days.

Unknown said...

Bless you're heart - so much physical pain. I've had my share, but nothing compared to what you endure each day.

I'm following you from BlogFrog. I couldn't link up to your other blog :(

I hope blogging & writing provides you with some ease and comfort in your life's journey.

Doce said...

I was diagnosed with fibromyalgia four years ago, and I have been struggling daily just to get out of bed and go about my day. The treatments in the book "Beat Sugar Addiction Now!" by Dr. Jacob Teitelbaum (http://endfatigue.com/) have made a huge difference in my life. I am not cured, but my symptoms are much less and I have a lot less aching and less pain..........I feel that the SHINE protocol which is described in detail here has made such a huge improvement in my quality of life. I was surprised to see thatt he author had suffered with this same condition and had used the treatments he describes here to treat himself and to get himself well enough to complete medical school and live a good life. Knowing that he has been where I have been makes all the difference as far as I am concerned. Dr. T is one of the foremost experts on Fibromyalgia and CFS in the country - be sure to follow him on Twitter: http://twitter.com/DrJTeitelbaum

Selena said...

I appreciate all the ideas about what to do on a bad day. Some are new to me and I must try them!

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