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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Sunday, July 25, 2010

The Big Breakdown: When Everything Goes to Hell, What Do I Do?

This is a post from the next ChronicBabe Blog Carnival (publish date: July 27, 2010), and the theme is: The Big Breakdown: When Everything Goes to Hell, What Do We Do?  How do you handle yourself when everything feels like a disaster? How do you get though it and come out the other end a stronger woman?

Ok, first of all, I'd like to say that I think I have pretty good coping mechanisms, and that I can handle disasters pretty well, so when I saw the topic I didn't think it would be that difficult to write about it.  Then when it came down to it, I stared at my laptop for a good 20-25 minutes before anything came to mind. I had no idea what to say about it really. Truth be told, it doesn't really take too much for a person with a chronic illness, especially one that involves pain, and widespread pain especially, to have a breakdown. Now, I don't mean a full-fledged breakdown like you hear about people having in their mid-life--a mid-life crisis--nothing like that at all, but it doesn't take much to send our lives into a tailspin.

For me, I no longer work because I'm on disability, but I do lots of volunteer work because I am a Type A personality, over-achiever, control freak, always-has-to-be-busy-kind-of-gal.  So normally 2 to 3 days of the week I'm doing some sort of volunteer work outside the home plus whatever work is required of me to do from my couch and my laptop.  I have two dogs. One dog, Max, is blind, has diabetes, Cushing's and 3 legs, and is 13 years old. The other dog, Cookie, has fear-aggression issues because he was attacked by a dog that got into our apartment when I opened the door to take them outside. Now he is so afraid of all other dogs that he feels he needs to attack them before they get to him first! So I take them outside during the day one at a time to prevent any problems. This way I can keep total leash control over Cookie in case another dog is around, and Max has my undivided attention so he doesn't fall off the curb and get hit by a car or wander off somewhere where I can't get to him.  We always eat at home, so I always make a home-cooked dinner. I do the cleaning, minus the vacuuming and high reaching.  We are in the process of adopting a baby, and if you know of anyone that has done this before, you have to always be on top of things--paperwork, profiles, and being ready at all times for "the call."  Also, you would know that the woman tends to be the one that keeps it all in order. I order more copies of our profiles, I keep the home study up-to-date, and I make sure that the adoption website is up and running. He just assumes all of this just "happens" magically.

OK, now throw in doctor appointments, physical therapy, dental appointments, oil changes for the car, a pedicure (possibly if a friend comes to visit for something fun and girly to do), a haircut, dyeing your hair (I actually do it myself), arching your eyebrows (I also do it myself), grocery shopping, shopping for shoes (the kind that you have to buy because the flip flops are killing your feet, and you just can't deal with the pain anymore even though you have 300 flip flops in every color, and you absolutely love the convenience and cuteness factor of them), veterinary appointments for the dogs, and trips to visit family (because you're the only ones in the family that live out of town, and it falls on you to visit them instead of them to visit you).

So see where I'm at now! Things are starting to feel crazy, but this is stuff that is not too far off the normal stress charts for other people. OK, so now let's throw in a couple staff parties for my hubby that I have to go to with him. And.....hmmm.....let's also say there is a birthday party in there for a friend to go to dinner and listen to a band play or a movie or bowling or go to a bar...you get the picture. Now let's throw in the fact that there is a big event with the Young Professionals Group that I Chair; let's say the Arthritis Walk Atlanta.  Let's also say that not that many members actually show up at the Walk, and that leaves more work for the few of us there. On top of that, oh let's throw in a fibromyalgia flare.  Let's say there was a huge storm that blew in...OMG!  Thunderstorms and fibro do not mix!!!! Now let's say that I had to miss my Remicade infusion because I ended up getting a cough from an allergic reaction to feather pillows (true story), so I had to wait a whole week later to get it. Now we'll throw in an arthritis flare on top of it; oh and my arthritis is psoriatic arthritis, so my psoriasis flared too!!!!!  Then, my parotid glands swelled up to look like I had mumps because of my Sjogren's! We had finished making a video for our adoption website, so I had to work on editing that, with all my flares and other responsibilities of life....

For me, I have all these conditions, and on top of that, I've had 9 surgeries! Most recently, in March, I had a shoulder replacement at the age of 35. Imagine going through all of the above while recovering from shoulder replacement surgery!  Add to that, the stress that they could call at any moment saying they have a baby ready for you!  Going through rehab is hard enough, but with fibro and arthritis, and now migraines on top of it, I have been to hell and back!

So what do I do with that...well I reach a breaking point of course!  There is only so much that the human body can withstand.  All of that is too much!  And in reality, it only takes a swollen knee or elbow to have to cancel a night out with friends. You only need rain in the forecast to cause a flare for your fibro, and your whole week could be shot--don't even think about those plans to clean out your closet! HA! I say to that!

So what do I do to prevent a breakdown? What are my coping strategies?  Well, I am very obsessive-compulsive, so I make tons of lists and have a calendar in my purse, on my fridge, on my wall by my desk, on my phone, and on my laptop. I make sure that every single calendar is updated regularly--as soon as an appointment is added. I also have a running task list on google and on a notepad in my purse and on post-its. I prioritize them by what has to be done today, tomorrow, this week, next week, this month, next month, within 3 months, within 6 months, within 9 months, and within the year. And daily, I update the priorities. I know it sounds like a lot, but if I don't do this, my foggy brain gets confused, mixed-up, unable to concentrate, depressed, anxious, nervous, and everything that I have to do seems huge and like it could never get done. That is when I totally freak out!!!!

A couple weeks ago, for instance, I was extremely foggy and could hardly concentrate on normal daily tasks. I had a dental appointment, and when I returned to my car in the parking lot, the car door was wide open. I forgot to shut my car door!!! OMG! I thought I was totally losing my mind. On this particular day, I had a list of things to do that were not prioritized. My hubby asked me to make some errands for him after my dental appointment. I put everything that I needed to do in a bag in the front seat of the car (except the bank deposit--which I placed in my purse thank God).  I did my errands, still trying to remember how I could have forgotten to close my car door--I did however lock it. Thank goodness I did that because that surely kept the robbers away! I finally got home, mentally exhausted, only to find my apartment door ajar! Yes, I left my home, and just let the door fall gently closed behind me without a thought. I didn't pull it all the way closed or lock it! I just went to my car with my bag-full of errands to run after my appointment, already stressing over it because I didn't have it well-planned out like I usually do!

So that is why all the calendars, notepads, task-lists and post-its are so important to me!!! They literally keep my mind intact!

So that is one coping mechanism--I guess I can call it organization or scheduling or just obsessing and compulsing!

I also make sure that I begin to treat my pain immediately. I cannot push myself through the pain. I am a strong person, but I don't feel that shows strength at all. I think that shows that your body is telling you to slow down--listen to it. Rest, take pain meds if you have to. Take a warm bath, meditate, relax...listen to mood music, maybe do light exercise. I actually like swimming when I first feel pain coming on, not when it is full-blown, but just at the first sign. It releases endorphins and makes me feel better fast.

One really big coping mechanism is talking about what is going on. Write it down if you don't feel comfortable talking about it to another person. I started blogging for that very reason!  I joined ChronicBabe and other social networks for those who are chronically ill or in chronic pain. I have lots of friends who share my illnesses or illnesses like them to be able to talk to them about it.  On facebook, a good 90% of my friends are those with chronic illnesses. It is great to have that support! I think that it is definitely needed!

I also see a counselor/therapist regularly. I was going weekly, well until my insurance said I have to go every other week. So now I go every other week. I look forward to seeing Suzanne. There is a healing process that goes on when you talk to someone that isn't a friend or a family member, but rather, is a professional person. She isn't going to walk into another room; she isn't going to think you are being self-centered always talking about ME, ME, ME!  I always feel so good when I leave her office! If you haven't gone before, go now--go before you reach that breakdown. That is what I suggest.

Also, pray, pray, pray!  No matter what religious or spiritual belief system you have, pray to your higher power. I pray to God My Mother and God My Father! I pray for strength when I think there is no way that I can find it, courage when I think I can't take one more step, and I pray to learn from my own experiences as well as from the experiences of others. Afterall, if we aren't here to learn, and in turn to use that knowledge to help others with similar problems, situations and concerns, then what the heck are we here for?

That is how I come out a stronger person in the end, after all is said and done. After all of life's stresses, and my body's working against me, and when people wonder just how I'm gonna be able to do it yet again, I do!

We are all WARRIORS!!!!

God grant me the Serenity to accept the things I cannot change,
    The Courage to change the things I can,
          And the Wisdom to know the difference!
                                                                        Amen!

2 comments:

Amanda said...

Perfect! Great solutions including the most important - pray to whatever you believe in, and do it most often and importantly. Hold on to the blessings you have and things/people you love, and make the effort to try to live more than you take a day off, sit it out, put it off. Amen to serenity!

Dana Asmara Morningstar-Marton said...

Amanda, I'm glad you agree w/ me! YEs, Amen to serenity. It all seems to work for me!
Blessings, Dana

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