Dancing with My Disabilities!: Oh So Bad I Ache! Oh My God, I'm Still Awake!!!

Blog Title: Dancing with My Disabilities! This blog was I Already Gave My Right Arm to Be Ambidextrous prior to Read My HIPS, which is now Dancing with My Disabilities. I am doing some renovating and will begin blogging for the New Year 2024. Please be patient, and please continue to support this blog as well as my other blog Chronically Mommy, which is also being renovated to be more up to date. Pass this information on to anyone that you know may be interested in knowing...To be continued...

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!

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.

Tuesday, August 23, 2011

Oh So Bad I Ache! Oh My God, I'm Still Awake!!!

OK, Now it's time for the Sleep topic for the MOWer's blog carnival. I hope you learn a lot from this topic. I think this is an important topic for others to read about those with chronic pain/illness. It is, sadly, something that affects all of us.

What I find so interesting is that when our son was born 8 months ago, the question that was asked the most was, "Are you getting any sleep?" I always had to laugh. No, I wasn't getting any sleep, but it wasn't because of my sweet baby boy. He was amazing! He slept through the night since the day he left the hospital. I couldn't believe it!

The reason it's so interesting to me is that this seems to be the only time anyone seems to care if you are sleeping through the night, if you have a new baby. No one asks you if you have a chronic illness, especially chronic pain, if you have been able to sleep (unless the other person is also experiencing chronic pain/illness and also not sleeping). Why don't people think to ask that question? Why is it that we would only not sleep if we have a baby? It was actually torture for me to have a baby that slept through the night from the beginning. I kept thinking, "How perfect; I'll have someone to stay up with me through the night, and we can keep each other company. I will take care of my baby, and the baby will help keep my mind off my pain." Well, that is what I get for trying to think ahead and plan...

I have tried it all...new mattress, flip/turn the mattress, only use the bedroom for 2 things (sex and sleep), meditate before bed, take a soothing bath before heading to sleep, Sleepytime tea, wind down and read just before bed, journaling before closing my eyes, using a TENS unit while sleeping, pain meds, sleeping meds, heat/cold on painful areas, different positions, prayer, and many more...

Lately it has been much, much worse. I stay on the couch, and stay online until the wee hours of the morning while my hubby and dog go to bed. My son also sleeps so soundly. He sometimes loses his pacifier, his fafie. He might whine a little. I smile, and as quickly as I can enter his room to soothe him with his favorite fafie I place it back into his soft little mouth. Thank goodness I was awake.

My hubby gets so aggravated. He doesn't really like to be awakened from a deep sleep, and I always get into bed around two or three a.m. He always thinks that I have just been up watching t.v. and goofing around. It is so hard for him to understand that I just can't sleep. If I try to go to sleep when he does, I stare at nothingness. I watch the clock change from 11 to 12 to 1 to 2 to 3 to 4 to 5. By then, I do finally doze off. Then, he is waking up and getting ready for work. Then, my son wakes up and is ready for breakfast. Everyone is well-rested and ready to face the day. I on the other hand am even more tired than the day before...

Each day I am even more and more tired...

Because I am more tired, I am more and more fatigued..

I need to be able to place my head on a soft pillow and sleep...

I need to be able to find a position to sleep in on a good firm mattress and drift away to dreamland...

I need to actually have a dream again...

I don't remember the last time I had a dream...

I do remember the last time I pulled an all-nighter...last night...

I forgot what it's like to know the difference between night and day...to wake up in the morning refreshed and go to bed at the end of the day...

I want to be able to say to all the people with chronic pain/illness, "How well did you sleep last night?" instead of "How did you sleep last night?"...because I want to ask a question expecting a positive outcome rather than to ask it expecting a negative outcome...

For those of you who don't have a problem with sleep, I have to tell you, it is the worst thing to experience. To just lay in bed and stare at a dark ceiling is miserable. The fact that the pain is keeping you up to begin with is bad, but that you are so fatigued and would give anything to just fall asleep is a different kind of pain. I lay there and want to sleep so badly that it actually hurts!!!! I pray to God to help me to drift off to sleep. I try teas, meditation, hot baths, music, medication, EVERYTHING!!!! Nothing works...And to know that if I could just get some sleep, I would feel a little better.

Sometimes if my hubby wakes in the night, and asks if I am still up, I answer yes, and keep on talking. I am just so happy that someone is up with me. It isn't long-lasting, however. He soon falls asleep as I'm still in the middle of a story. The next day, he doesn't even remember ever talking to me. When I tell him about it, he gets mad that I interrupted his sleep. He doesn't even remember!!! He isn't tired, how did that interrupt HIS sleep? Oh, well.

The biggest thing that I want to get across is what it feels like, why I can't sleep, why many of us can't sleep. This is how it is for me:

On my belly, the pain is so bad.

Instead, I flip to my back.

On my back, my knees begin to ache,

Oh my God, I am still awake!

My feet, my feet, I can't feel my feet!

They start out numb but then I start to feel HEAT!

My feet hurt so bad,

I feel like I could actually go mad!!!

MUSCLE SPASMS IN MY ASS!!!

Please, God, when will it pass?

I want to sleep!!!

The pain is beginning to make me weep.

Tears...

Fears...

Now crying hard.

I change positions, but I have to guard

my hip, my shoulder and elbow too.

Oh, God, what do I do?

The pain is now so intense,

and sleep just doesn't make any sense.

How do I sleep in a bed

that feels like rocks underneath my head?

Will I ever dream again

when my pain is so deep within?

It feels like my marrow is fighting back.

I feel like I could break if I hit the sack.

Burning, pounding, aching, stabbing,

Bruising, biting, pinching; all of it I'm having!!!

It's funny weird;

Each night, having the same things feared,

I want to be able to dream,

but need sleep, so it seems,

to be able to even have a dream again.

So when I think about where I've been,

I dream that I will someday have no pain,

so I can in fact dream again, all the same.

As for right now, when I lay in bed,

the pain is so bad, I often wish I was dead.

It's Time You Understood.

I want you to understand that your arthritis is not the same as mine if you tell me "I have arthritis too in my knee sometimes." That is not what I have. I have autoimmune arthritis. I have fatigue, pain, and stiffness in every joint in my body, take very serious medications like biologics which is in IV form every 4 weeks at the hospital's infusion center and chemotherapy pills. The type of autoimmune arthritis diseases that I have affects my eyes, my lungs, my heart, my skin, my ligaments, my tendons, my salivary glands, as well as my joints. Please visit www.causes.com/WorldAutoimmuneArthritisDay to donate $5 for the cause.