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

BlogWithIntegrity.com
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Tuesday, March 23, 2010

Yikes, Only One Week Until My Shoulder Replacement Surgery!...

(This post was presented in ChronicBabe's Blog Carnival May 5, 2010 that was hosted for Patients for a Moment: What's your most laugh-out-loud illness-related experience?   Fellow ChronicBabes answered the question: "What's your most laugh-out-loud illness-related experience?")

Well, I have been seriously preparing everything for my shoulder replacement surgery next Monday--exactly one week away.  I was thinking about everything that has brought me to this point right now.  Wow, what a ride!

I remember when I told my mom that I needed my first joint replacement surgery, my left hip, in 2003, when I was 29. She was so afraid that she kept a good distance from me.  She thought that a hip replacement was a whole new prosthetic leg.  She thought that the surgeon was going to completely cut off my entire leg and fit me for a prosthesis.  She couldn't even come see me. She couldn't face me because she didn't know what to say.  When she did visit me for New Year's Eve, nine days after my total hip replacement, she started laughing in hystarics. I didn't know what to think except that she had lost it. That is when she admitted to me that she was relieved to see that when I pulled off the blankets, it was my actual, original leg under there. LOL!  She is a nutbag.  I like that word because it isn't mean, just funny. When someone does something really goofy, you can call them a nutbag, and you don't feel like you just called them something you will regret at a later date.

I remember when I first was left alone with my hip replacement and my walker. I would fix something to eat in the kitchen. Then I would try to figure out a way to bring the food into the other room...There was no way to do it with the walker.  I would try to balance a tray, or I would just try to balance a plate or bowl.  Then as I would approach the table...BOOM...the food would hit the floor. Jim would come home from work later that day to find my breakfast, lunch and dinner spilled sporadically on the floor from the kitchen to the breakfast room to the living room...

Oh, another great story was that when I actually went home from the hospital after my hip replacement, it was 2 days after my surgery, and I was sent home because it was Christmas Eve, and my orthopaedic surgeon felt sorry for me to be in the hospital for the holiday.  It was cold and snowing, and I was so weak...I had just received 2 pints of blood that morning because I was anemic, and I was already going home...truly amazing...that's modern medicine for you...So, Jim pulls the car up to the entrance of the hospital, and the nurse wheels me out to the car. They very carefully slid me into the back seat without bending my left leg.  Well, while Jim was working on getting me in the car, he had leaned my walker against the wall of the building.  He closed the back door, asked if I was OK, and I weakly said yes. We drove all the way home, taking about 45 minutes in the snow, while I was feeling woozy all the way there. As we pulled into the driveway, I couldn't wait to get into the bed and lie down again.  Jim opened the back door to think about how he was going to get me out, looked up at the front door with the 6 big steps and the steps in the garage by that door that were smaller, and only 4.  He decided to go with the garage steps. He went to get the walker out of the trunk, when he remembered that he didn't put the walker in there afterall.  He had left it leaning up against the front wall of the entrance to the building.  At this point, I was so warn out, nauseous, and even more weakened than at the start of the trip. Now we had to drive another 45 minutes there, and then back again. I didn't want to sound upset; afterall, Jim was my only family living in KY.  Who else would do this for me?  So, he apologized and looked at me as though he wanted to cry because he felt so bad.  We went all the way back.  And yes, it was still there.  No one stole my fancy alluminum walker.  It was top of the bottom line too!  LOL!  It took me about 25 minutes to get out of the car and up the 4 steps into the house.  When I finally got to the bed, I got all covered up and puked very quietly in a basin on the side of the bed so as not to disturb Jim too much. I just still felt so bad about what had happened.  And ya know, we will never forget that day.

So, whatever happens now, I'm prepared!  I have Jim, who will make mistakes just like before.  But ya know what, it makes for great blog stories.  Also, if you can't laugh about it, then what can you do?


When I was told that for my shoulder replacement surgery, I was gonna be under general anesthesia and a nerve block, which is kind of like an epideral but just for the arm that is having the surgery.  I've had it before for my other shoulder surgeries, and I've had the epideral for my hip replacement.  The nerve blocks are crazy things.  You cannot feel that specific limb at all until the anesthetics start wearing off, and when that happens, it is like a heavy feeling.  When I had my hip replacement, and they came into the room to check on me after my surgery, well a number of odd events happened.  First of all, the male nurse asked if he could look at my incision. I lifted up the side of my gown to show him my left hip, but there wasn't a bandage there. I freaked out. Immediately my thought went to that they replaced the wrong hip, so I looked at the other side, but there wasn't a dressing on that side either.  He lifted my gown up on the left side to reveal my buttocks, and sure enough there was a dressing there.  I was so astonished to see a dressing there. I said to the nurse, they replaced my hip through my butt? He laughed and said that I had a very thoughtful surgeon who wanted to make sure I could still wear a swim suit.  So, I'm feeling pretty good, but the epidural hasn't worn off yet, when it should have.  It hung around entirely too long.  They start to get a little nervous and think maybe they should get me up moving to get some circulation to the leg.  That is when I realize that the feeling is there, but my leg is just not the same as it used to be.  When I think, move leg, it doesn't move. I had to put this lassow around my toes and literally lift my left leg out of the bed because it plum forgot how to work. I had to totally retrain it how to move from side to side, climb chairs, and then rebuild the muscles.  It was incredible. I thought it would be a cinch.  And I'm a nurse, and I was this clueless! I can't even imagine being a person with no medical training at all!


So, before I got my hip replacement I was working as a diabetes nurse educator in a hospital in Lexington, KY. I was in a wheelchair because I could no longer walk on my left hip because it had already collapsed (just like my right shoulder now, except I don't do a lot of walking on my hands).  Would you believe that the HOSPITAL was NOT WHEELCHAIR ACCESSIBLE!?  Yes, you read that correctly, so you don't have to read it again.  I would park in the parking garage, and then I would call the nursing manager to meet me by my car.  She would come down and push my wheelchair from my car to the door.  Then she would open the doors and stand there holding it open while I rolled myself into the elevator lobby area in the parking garage.  We'd take the elevator up to the floor we needed. Then she'd wheel me over to our building and open the next couple of doors for me as I wheeled through them. Then we'd take the elevator to our floor. She'd wheel me to my office door, and open it for me, and again, I'd wheel my way on through the doorway.

Well, you can imagine this got old for me and for my boss.  I knew I wasn't going to work like this much longer.  I taught classes in that building at night, when I was the only one in our department.  How was I gonna get out of the building without a hospital guide?  I needed a service dog at the very least.  So I was approached by the nursing manager to take medical leave until I could figure things out.  So I did. I took it for an indefinite amount of time, thinking I would return to the job when I got better.  I never got better. I got my hip replaced, but the other hip still needed replaced at some point. I began having problems with my knees and shoulders and wrists and elbows and fingers and ankles and toes, etc., etc., etc.  They had even told me not to worry that my job would always be there for me whenever I wanted to come back. Instead, I ended up on disability--bummer!  Instead, I ended up with the World's Record of the amount of chronic illnesses one person could get in a lifetime.


This time, what is really important to me is that I will have my mother-in-law here for the actual surgery. That means so much to me.  People don't realize how hard that is to live far away from friends and relatives that you have known your whole life, and not have them there for such a serious surgery.  I get very nervous the day of the surgery.  Up until that point, I'm completely calm.  But there is something to be said about having a loved one there when you go under, with that fear that there is always the possibility that something could go wrong.  Things can go wrong anytime there is anesthesia involved, but I'm getting a nerve block, they are cutting through a huge muscle, and literally cutting through and removing my shoulder and putting in a new one.  CRAZY!!! Even though, I've had this done to my hip, I still cannot even fathom that they did that to me or that it is gonna happen again, or that it will happen several more times in my lifetime, and then revisions will more than likely also occur.  I guess I might as well sit back and enjoy the ride...

Lastly, I'd like to mention about my pain management. So I go today to see my pain management doc.  I was supposed to ask him, per my surgeon, if he was gonna be following me post-op or if the surgeon should do that.  He said that he was gonna follow me normally and not change anything and to tell my surgeon that all the pain management therapy that I'm currently on will continue now, during and after the surgery plus whatever they give me for pain because the therapy that he has me on is my normal regimen for pain control on a daily basis.  My pain for post-op will be separate from that. So I called and left a message with my surgeon's nurse with that info. He calls me back and says that the surgeon is definitely gonna have to call my pain doc because the amount of pain meds that I'm on is more than they have ever seen.  If they add to that, that is an extreme amount of narcotics, and he believes that I'm already on very powerful narcotics.  First of all, let me clarify. I am on the lowest dose of a long-acting narcotic twice daily, and have been on that same maintenance dose since 2002. I am also on a short-acting narcotic that is the lowest dose that technically can be prescribed up to every 4 hours as needed for pain. I have it prescribed twice a day and only take it at bedtime because it makes me sick.  So, how is that extreme!!! When I had my hip replaced I was taking the same short-acting every 4 hours before my surgery, and I just continued it after the surgery, and then weaned myself off it as the post-op pain got better.  When I spoke with my pain doc about what the surgeon's nurse said, he told me he would talk to the surgeon because he was not going to have me go into surgery without adequate pain control, and he was not going to have me come out of surgery in post-op for that matter without adequate pain control!

This is very important info people...communicate with all your docs if you are gonna have surgery...you may be on lots of meds or have lots of different conditions...make sure you know everything you need to know before you go to the hospital that day for surgery!!!

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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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