I Already Gave My Right Arm To Be Ambidextrous...Now Read My HIPS!

Now Read My HIPS! is returning very soon. My blog is currently under construction. I am doing some minor renovating and will begin blogging for the New Year, possibly before. I can't wait to start up again. I have missed all of my followers! I love every single one of you! You have helped me to become who I am today! I could never have continued my blog without all of your support. Please be patient, and please continue to support this blog as well as my other blog Chronically Mommy. Pass this information on to anyone that you know may be interested in knowing...To be continued...

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 and performs! I still have pain, but I want to blog about how I have fun too! Now Read My HIPS! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain.

Hi, I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, sjogren's, fibromyalgia, and hypermobility. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Seven years ago my spine orthopaedic surgeon told me I had a small amount of autoimmune arthritis in my SI joint. The question still remains: Is the spinal involvement due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? 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 literally gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012.

I began belly dancing. Yes that's correct! I began belly dancing in 2010, so now it is time to "read my hips." 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 belly dancing and performing! I belong to a dance troupe since February of 2014, Seshambeh Dance Company. I am dancing weekly with my troupe in an advanced class and on Saturdays with another class which focuses on exercise and being a strong woman. I am performing a lot more often now, at least 4 or 5 times per year! Join me in my journey!

At times, I take 16 to 20 pills a day. I go every 4 weeks to the to get a 2 hour IV for my autoimmune arthritis diseases. Just when one thing seems to be doing better, something else goes downhill! My attitude, however, is always going uphill! I am 42 years old, have been married 16 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!

(Formerly "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.

Now Read My HIPS!

Now Read My HIPS!
Asmara "Beautiful Butterfly"

Blog with Integrity


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!!!
Please, God, when will it pass?
 I want to sleep!!!
The pain is beginning to make me weep.
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.

Walk Team

Walk Team





Belly Dance

Belly Dance
Before the Performance 5/6/12
Watch live streaming video from arthritisfoundation at livestream.com