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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Tuesday, March 23, 2010

How to Cope When Things Get Too Painful/Overwhelming!

Today, I woke up at 6am to give my one furkid a drink and take him outside. I've been having to devote so much of my extra time and energy to taking care of him (which already is not a whole lot to be handing out). Max is his name.  We didn't name him; he already had his name when we adopted him. He is a Silky Terrier, and he looked like a big Yorkie (well all 13 pounds of him). We were told that he was 3 years old when we adopted him in Nov. of 2000, right after we got married.  We already had a 9 month old puppy at home, Cookie (a Jack Russell, Beagle, Spaniel mix). I wanted to get him a friend, a companion, a brother.  Max was hit by a car 6 months before we adopted him, and had his back leg amputated. When we got to PetCo, Max was in a cage all alone, and no one was even looking at him.  We ran to his cage (my mother-in-law and myself), the rescue group volunteer came up to see if we needed any help. I said I had read all about Max in the newspaper and that I was there to adopt him.  They looked at me all surprised. You don't want a puppy?  Nope, I wanted Max...Max had went through 12 foster homes, and he was ready to come home, to our home, where he belonged...

Max remained perfectly healthy until 2007, when he developed Cushing's disease--an auto-immune disease that affects the adrenal glands.  It causes the adrenal glands to produce too much cortisol.  Cortisol is a hormone, a steroid. It is like he is on steroids all the time--constant hunger, thirst, change in behavior, etc.  He was started on a medication that was like a chemotherapy drug. It basically attacks the adrenal glands. If it attacks them too much, it can obliterate them.  Exactly one year ago, he went into remission. No one knew why.  We stopped the meds, and he was doing great.  Then, in Nov. of 2009, he began to have accidents in the house. I took him for an urine test at the vet. When they were doing the urine culture, they used an ultrasound to guide the catheter, and that is when they noticed something in his bladder.  He had bladder stones!  We scheduled for him to have surgery.  I was torn.  He was 12 years old, and had already been through so much. I wasn't sure if it was a good idea to put him under anesthesia.  I spoke with a good friend who is a vet in the city I grew up in.  She told me that he needed to get the surgery now before the stones tried to pass through the urethra and cause pain.  Then the surgery would be an emergency.  You don't want that.  So he had surgery on Nov. 20th, 2009, while we were out of town for a wedding. I was so nervous because we left him, but I thought he would actually be in the hospital longer than normal then and under their care rather than sent home. I thought that would be good.  He wouldn't know if I was out of town or just waiting at home for him.  They removed 28 stones from his bladder, which they told me would help him to be able to go potty much better and easier.

He ended up having a reaction to the staples, then 2 months later a suture reaction.  He went on antibiotics multiple times after surgery. He has had no more stones, though. Then he started having more accidents again this past month in Feb.  We took him for another urine test.  There were no stones, but sugar in his urine.  They did some blood tests, and his blood sugar level came back to be 425 (normal is 80-150).  He was diagnosed with diabetes and put on insulin shots twice a day, went blind in two weeks, could hardly walk, licked open his incision from his surgery 4 MONTHS AGO!, and was retested for Cushing's disease, which also came back as positive. I have been trying to decide what to do. He is not in any pain, and he still plays with his ball and his favoritie newspaper.  You have to carry him almost everywhere. It has been so much work for me, though, having all of my own chronic illnesses.  I really needed to make a decision...



For my own self, I began to have more fatigue, more pain.  I could hardly get out of bed to take him out in the early hours of the morning.  I could hardly carry him anywhere anymore.  I was having trouble cleaning up his accidents.  It was getting so hard, and I needed to find a better way to cope...

I needed to get more sleep.  I don't sleep at night. I could say that I don't sleep well at night, but let's face it, I don't sleep at all at night. I am in my most pain. I do my most thinking. I do my most worrying. I can never get comfortable.  The night is THE WORST. So, why not take advantage of my better times and my worst times, and use them for what they are good for.  So, since I can think best at night, I can read and write and do anything that fits into the category of reading or writing, such as blogging or emailing or surfing the web.  Then during the day, I can do some of the various household chores, and take a huge nap.  I don't work anyway, so who's gonna tell me I can't do that?   This is a great way for me to cope, use my strengths at my best times, when I'm least fatigued and have the least pain.  Sleep when I'm able, and when I can't, to hell with it. I might as well do something that I feel like doing rather than focusing on the pain at that time.  Besides, if I lie in bed at night trying to fall asleep and can't, tossing and turning, that is all I think about is how much pain I'm feeling at that moment.  And ya know taking a huge nap in the middle of the day is great because then I'm a whole lot less fatigued!

Prayer and healing go hand and hand with me and are also great coping mechanisms.  Rather I'm on the receiving end or the giving end, I always get something out of it.  Whether you use Reiki, Theta, or another form of healing.  Energy transferred from one person to another is healing!  I have been on both sides. I have been taught how to be the energy healer, and I have received energy healing.  When you are the healer, it is dependent upon the receiver on how well it will work.  So no matter if you are the giver or the receiver, it is always up to the receiver.  So every time I give,  and the receiver openly accepts the energy, I also receive a balance of energy in return.  And when I am the receiver, I graciously accept the energy.  The same goes with prayer.  When we pray, we are always thanking or asking God for something.  So we are giving thanks for something, or we are asking to receive something.  So in prayer we are giving and receiving as well. I believe that as an energy worker, I am a conduit for God's energy or his love, and He/She is sending his healing energy through me to help others who are in pain.  It is a wonderful thing!  Prayer is the same way.  We pray together or alone, bringing the power of God to us to help us here. So Prayer and energy healing are wonderful coping mechanisms.  I use them both on my dogs.  Cookie is living proof that it works. Both of his torn ACL's healed without surgery, and I was told by 5 different vets that surgery was the only way. He has no problems now.  Max's Cushing's disease originally went into remission with prayer and healing energy.  Also, now, as of 24 hours ago, Max is walking on his own, has had no more accidents, is seeing better, his sugar levels have decreased, and he is running around feeling better!  Wonderful coping mechanism!

For days that I cannot get out of my PJ's, I love to read, with a good cup of tea and honey. I prefer chamomile or Earl Grey or even a nice red tea.

I enjoy swimming at the pool at the gym. I feel like I leave my body. It is almost an alternate universe to swim.  You can visit some other posts about how I feel about swimming, but it is a wonderful way to help pain, stiffness, and fatigue. I get a jolt of energy.

I do love a nice warm bath, in the dark with just candles, especially vanilla scented candles. I don't care what season it is; vanilla is always a scent that makes me feel good!

I like to cook to cope!  I just have to be careful. One big problem I have is overdoing things. I have a history of not knowing when to stop. So if your like me, only cook something that will help you to cope and relax you, and when it starts to get painful, or you begin to feel fatigued, STOP!

I love when the sun is shining, and it's warm enough to take a walk with my dogs.  That is so relaxing to me.  I can sit on the swing in the courtyard when I get all tuckered out after the refreshing walk too!

Finally, I love to set an evening routine. I love to wash the dishes in the sink.  The warm water and the movement of my hands with the sponge and the soap bubbles feels good on my hands and wrists. I load the dishwasher, and then I wipe down the countertops, and I feel so calm and relaxed.  It's too bad that as soon as I lie down in bed, every part of my body screams in pain.  Oh well, I guess I can't do something to help me cope with everything! I think I just wasn't meant to sleep at night like everyone else!

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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
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