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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Saturday, July 9, 2011

When Regret Gets The Best of Me...Regret Enters The Dark Hole With Me!

For the third post for the MOWer's Blog Carnival, the subject is Regret. Wow! Now there is a topic that a person with any chronic illness that involves disabling pain would understand!

I think we all probably could have a lot of Regret if we allowed ourselves. We can be rough on ourselves too as chronics.  We have to give up a lot; we miss a lot out of life; we lose a lot of friends (or I guess they weren't true friends to begin with, but it still hurts); our family gets smaller (they stop calling, stop listening--if we were lucky to have them ever start listening--they simply fade into the distance); our dreams disappear or remain just that--dreams; our goals become inconceivable; life becomes less fun; and the world becomes smaller.

I believe that when we start to think and feel this way, that is when we begin to regret things in life that we have done or that we never achieved.  We start feeling this darkness, this sadness, emptiness, and we feel like we can't get out of this dark hole of dwelling on all of this "stuff." That is when the regret enters the dark hole with us...

...Remember when you were a young girl?...You were such a beautiful, delicate ballet dancer. You were SO young then. You danced at the performing arts studio three hours a night and went to school. You had so much energy then!  Remember when you were in contests and shows and tours with professional ballet companies? The GRACE was flowing through your veins, and I do believe you were high on life! You were so joyous then, and the music was a part of you. Flowing, floating, leaping, bending; strong, determined, directed, creative; over-achiever, highly-commended!
You had such talent! You were so far ahead of the other young girls your age. You could have made it so far. What if you continued further as a dancer? Where would you be today, Dana? If you didn't stop dancing so young, would you have been able to still be a ballerina? Well, probably not, but if you stuck with it, you could have gotten in at least another five years, maybe ten. But you were a quitter!!! Quitter, quitter, quitter! You will never know now how far you would have made it with your exams with the Royal Ballet in London. Sure, your first time, you got Honors--not one point taken off for anything--not for the written part, the oral part or the dancing part. And of course you got Highly-Commended for your second exams because you got one point taken off, and I bet you even remember what it was for. Don't you? What if you kept dancing. Would you have continued to do well on your exams? Would you have continued to move up? You will never know, will you?
I'm here now to help you remember all that joy that ballet gave you. I'm here to remind you that you quit before you were too sick to keep dancing. Then you actually were too sick and had to stop your love for ballet. Now I'm here to really rub your nose in it. You can't go back and do it over. You don't get to press rewind and play it all over again. It's too late!! Quitter, quitter, quitter! (by: Regret)

After Regret makes you feel horrible about yourself for a decision that you made years and years ago, then you start to focus only on that.  This is the one thing that always allows Regret to grab hold of me. I loved ballet with a passion that I cannot even put into words. I dream about dancing when I sleep at night (well when I do sleep, which is rare these days).  I dwell on it so much sometimes when Regret gets the best of me, that I can't stop sobbing. The tears flow. I gasp for air. I can never be that ballerina again...

I am not even graceful anymore. My own husband never knew me as a ballerina. I think that's sad because that really is the true me. I will always be that ballerina deep inside. I just can never again glide across the stage on my toes, leap high into the arms of a gentleman dancer who catches me safely, or twirl so fast that my head whips quickly so I can spot something on the side that I'm turning toward so I don't get dizzy. My feet ache so badly from plantar fasciitis and Achilles tendinitis, and my toes all have arthritis in them. I have a hip and a shoulder replacement, and my neck will never "whip" again because of the arthritis and bulging disk in my neck and lower back. 

Just so everyone knows, I stopped dancing for a boy...I had a boyfriend who played hockey. I wanted to watch his practice and his games, so I QUIT ballet! Yes, I really was a quitter! I was young, so I didn't think I was never going to have the chance to go back to ballet. I thought I had all the time in the world. I Regret thinking that way...

From here on out, I will never not do something or put something off or quit something because I think I could take care of it at a later date. Anything can happen. My Avascular Necrosis happened, and it happened very quickly in six joints, and psoriatic arthritis happened, and then psoriatic spondylitis happened, and sjogren's happened, and fibromyalgia happened, and hypertension happened, and endometriosis happened, and hemiplegic migraines happened, and pseudo tumor cerebri happened, and a hip replacement happened, and a shoulder replacement happened, and all the surgeries, meds, and side effects that go with it all happened!!!!!

I have realized that if we look back at everything that we missed out on, and dwelled on it and Regret all that we could have done because of it, we can't move on in life. It is like being stuck in that black hole and having Regret treat us like shit the whole time--tearing us down, reminding us of stuff we did or didn't do, making us remember stuff we don't need to remember or we want to forget. Ya know we might just want it to be that--a memory. 

For me, I have made ballet a wonderful memory. I have learned to fill it with other things. The music and I were one with ballet. I had always "felt" dancing because of the music so now I take dance classes that are less stressful on my joints. I take classes like NIA and belly dancing. I love them, by the way. No, they aren't ballet. To some, they may be the most wonderful dance classes ever. To me, nothing will ever replace BALLET, but I am no longer in that dark hole with Regret!

I would love to one day teach little children ballet. I know the fundamentals, and I love children! I think that just might fill that void almost completely.

I would like to end this by saying that I may not be able to actually dance as a ballerina anymore, but in my heart, mind and soul, I will always be a ballerina. No one can ever take that away from me. I will continue to dance in my daydreams and in my dreams while I sleep.  And I will leave you with this...

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!' (By: Anonymous)


 

Saturday, July 2, 2011

My New Found Independence!

Since our next carnival happens around the USA 4th of July holiday, we were asked to submit a post on the theme of independence.

Let's face it: chronic illness can definitely be a challenge to a person's autonomy and self-reliance; how has chronic illness impacted my self-sufficiency and ability to do things for myself?...


Independence is such a strong and powerful word for anyone with disabilities.  When I say the word, I get a lump in my throat and fight the tears in my eyes. For those of you who know me well, you know that I have been through some pretty rough times, and I have had to depend upon others, mainly my husband, to take me to doctor appointments, reach for things on shelves, and do many of the household chores. I had come to think that I would never reach a point where I could actually feel the freedom of independence...

Many people that didn't know me through the really hard times, and yes I still have hard times, but I'm talking the times where I needed help to get out of bed, to get in and out of the shower, to shave my own legs, and so on, find it hard to believe I was ever that dependent on another human being.  Well, let me be the one to break it to ya...I was. I was in a wheelchair, then a walker, then a cane, and slowly made my way out of using the cane. Then when my shoulder collapsed, I was unable to use my right arm for anything. Then it was in a sling until it was replaced. Then it was in a sling after it was replaced, then the range of motion was limited for several months. Now I can reach up and grab things off the top shelf--well not quite the top shelf because I'm not tall enough!


I was originally dependent on others for my lower half of my body, then it was the upper half of my body. Now with all the problems with my spine, I'm having some problems with depending on people for only certain things like making the bed and bending over for some things, as well as lifting heavy things. Also, my fingers are still in pretty bad shape so I am sometimes dependent on people if I need to do anything that requires intricate work with my fingers. Also, my other hip and both knees will collapse at some point and so I have to be prepared for the fact that I may have to depend on my hubby once again for my lower body again, and my other shoulder will collapse at some point as well, so I will be dependent on my hubby for the upper part of my body as well. I don't like to dwell on it, but I keep it in my mind so we are prepared for when it does happen.


At this point, other than some minor issues of dependence, which I would consider to be more than I need some help now and then. Right now I depend on no one. I feel as though I can finally say I am FREE! I feel a freedom that I never thought I could ever feel. Thank God! I get myself out of bed, I take showers alone, I dress myself, I take care of my baby while my hubby works,--feeding, diaper changes, baths, playing on the floor, etc.--shopping, cooking, cleaning, and laundry!  I really, truly feel so free because of this wonderful independence. What a gift!


This fantastic gift of independence came at no better time also! I had my shoulder replaced in March and adopted our first son in December. I must say, all the stars must be aligned just right for me!  Independence is a gift unlike any other gift. It keeps giving every single day when I figure out more and more I can do with this new found freedom! 


I know that the freedom that I am given with this independence will not last forever. There will always be this impending doom leering over me. I know what my future holds with surgeries, etc. I will have to live each day as though it is my last day of freedom...my very last day to enjoy my independence.

Friday, July 1, 2011

"Guilt"

It is that time again! It is time for the second MOWer's Blog Carnival. The title is "Guilt."  Now, I just wrote about guilt not too long ago, but it is something that seems to enter the lives of someone with chronic illness/chronic pain quite often. Actually, being human, we are the only animals that are faced with the feeling of guilt.  When guilt surfaces, it eats at our soul and resurfaces over and over again. Many times the guilt can make the illness even harder to bear.

I am currently faced with the guilt of not being a good enough wife. We recently had visitors for 3 weeks in a row--friends, then a friend, then my parents, then my mother-in-law, and then the rest of the family. My friend and her hubby and 2 kids stayed with us a couple days, and then went home, then my friend came back by herself so we could go to a concert. Then she stayed for my son's baptism since she is the Godmother. Then my mother-in-law also stayed with us, and the rest of the family stayed in hotels. So family from out of town and friends that live in town came for the baptism on Sunday. The baptism and celebration to follow turned out to be wonderful, but the planning and getting all the food, drink, cake, and decor together was a lot of work.  Also, getting everyone together, and knowing that everyone was traveling from out of town to get here, was very stressful.  Yes, it all got done, and it was a beautiful ceremony and a lovely celebration. But when it was all done, and everyone left, I literally collapsed!

I slept all day yesterday whenever Michael was taking his naps. When he wasn't napping, I watched him play on the floor with his toys or in his pack 'n play or his jumper. Today, I slept again all day!!! My hubby acted like he didn't even understand why I was so tired/fatigued/in pain. He wondered why things weren't done, and he wanted to know how I was able to take care of Michael if I couldn't do anything but lie around all day.

Here is where the guilt comes in...

I know I need to do laundry. I have sheets and blankets because we made up places for guests to sleep. I have regular laundry to do that I didn't do while guests were here. I have regular cleaning to do and dishes. Now I need to continue with the normal everyday stuff~make bottles, make dinner, change diapers, feed Michael, feed my hubby, take the dog out, feed the dog, walk the dog, etc.  I can hardly do the normal daily activities, let alone anything extra from having guests for 3 weeks. My housework is so far behind, and I have no energy!!!

I feel so guilty that I can't be a normal wife and parent!!!


The use of guilt here is not referring to the fact of being guilty of something, but to seeing or projecting my mistakes, while not knowing what to do about them or refusing to correct them. In this definition, guilt is a negative, paralyzing emotion, based on non-acceptance of myself or the situation, and it leads to depression and frustration rather than change or improvement. Guilt is usually a negative focus on myself: I am a bad person. I can't bear myself. I am not worthy.

What can I do about it?
1 - Reflect on responsibility. Often it is/was not my responsibility or fault! Blaming myself for everything negative that happens is a form of ignorance and self-centeredness. Of course, if I am careless and intended to cause problems, then I should take responsibility for my action and see to it that I will not repeat this regrettable action. Instead, maybe I can do something to make up for it.

2 - Reflect on motivation. An act done with positive intention and without self-interest is not negative, although other people may be harmed by it. The suffering experience of others is strictly speaking the result of their own actions. However, we may have made some mistakes like wrong communication or insufficient attention, etc. If this is the case, it should just be a reason to change our habits by improving our communication or mindfulness.

3 - Changing or accepting. If you can change yourself or the situation, change it! If you can't change yourself or the situation for a good reason, accept it! Not acting where we can and could act can lead to frustration and guilt in the long run; just like acting where we actually cannot do anything.

4 - Analyze the use of feeling guilty.  It is based in the present; it is intelligently concerned with the future effects of your recent actions; and it leads to remedying the damage already done and to caution about repeating such an act.

5 - Forgiving. Making mistakes is an inherent human quality: if you don't make mistakes you are definitely not a normal human being anymore. If we are unable to forgive ourselves, we will never be able to properly forgive others.

6 - Reality check with others. If you can overcome your feelings of guilt and shame somewhat, try to discuss these matters with others and see if your reasons for feeling guilty are really valid.

7 - Emptiness. An ultimate cure for all delusions, realizing emptiness will also rid our mind of guilt.

In summary, try to transform the lack of self-confidence, ignorance and mental paralysis with repentence, purification, forgiving yourself, love and compassion for yourself, openness, reality check with others, and wisdom into positive action, fearlessness, and self-confidence. Believe it or not, this is based on Buddhism! They don't believe there is such a feeling or emotion as guilt. So this is how they explain the human experience of guilt and repentence.  For Buddhists, they believe that guilt has such a prominent place because of the Judeo/Christian background of our culture. The concept of being born onto the earth with "original sin" - for which you personally are not even responsible - easily puts a feeling of guilt in your minds (I am bad, even without doing anything wrong). Furthermore, the presentations in several Christian traditions can give you the impression that you should feel guilty and ashamed. I believe that this type of guilt is a socially learned emotion. Tibetans do not even have a word for it! If that is correct, it is not even a basic human emotion, but a culturally -  imposed type of mental frustration; which means that you can relatively easily overcome it by un-learning this artificial emotion.

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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