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

BlogWithIntegrity.com

Tuesday, April 19, 2011

I Am A Superhero!

I am a Superhero!

April 18th, 2011 

This was a winning entry in How to Cope with Pain BlogWrite Something to Share” contest and is written by Dana, who writes at I Already Gave My Right Arm To Be Ambidextrous!

After coping with pain for many years, it becomes a way of life.  I’m truly not being negative.  I’m just stating a fact.  If you live with chronic pain, you understand what I’m talking about completely.  You learn to give yourself more time, to plan ahead, to always expect things could change at the last minute, to never put too much weight on your plans, and above all to give yourself a lot of slack.  You have to learn to not be too hard on yourself.  Ultimately, a person with chronic pain wants more than anything to be normal or to appear as normal as possible.  I know that I will never be normal again, and I accept it; but I can still dream…right?
I cope with my pain better than a lot of others I know, and I cope much better than I did when the pain first began.  There is a learning curve.  One of the most important things to know about coping with chronic pain that I have learned is that I can’t blame myself for what seems to follow when the pain days are bad, or worse than usual.  There is no reason to put more stress upon myself by putting blame upon me for something that I didn’t cause.  Now there are times when I overdo it, and I definitely can point the finger at myself for the increased pain that will cause.  But overall, with chronic pain, it is going to be there every day, and it will increase and decrease from day to day at no fault of my own.
I am the type of person who has always been extremely hard on me in order to challenge myself and accomplish goals in my life. Yes, I think that is important most of the time, but not when it comes to chronic pain.  I have learned that chronic pain is almost like a characteristic that makes me who I am, that can’t really be changed because it is a part of me.  For instance, I am short—5 feet   1 ¾ inches tall. I cannot make myself taller than that.  I can wear heels (although I don’t really suggest I do that with the pain that I experience in my feet, ankles, knees , hips and lower back),  but when I take my pumps off, I will always be 5 feet  1 ¾ inches tall.  If I wanted to be shorter, well first of all, I would have to ask “why?” Secondly, unless I am sitting down in a chair, I will always be the same height without heels.  So, with pain, I will always have it. I can better cope with it by taking pain medications, practicing relaxation techniques, exercising, resting throughout the day, proper stretching, proper shoes, etc.  But the pain will always be there, and it will never completely disappear.  I will have bad pain days, and I will have better pain days, but I will never have pain free days.  I accept it. It is a part of my life.
I can’t really say you get used to it, but I have gotten stronger as a person because of the pain.  Not necessarily physically, but mentally, psychologically, emotionally, and spiritually I am a superhero. That is how strong I am!  Because of the ability to cope so well with day to day chronic pain, and not allowing it to run my life, I am able to use the coping skills that I developed to help me cope in other ways in my life.  It is amazing how much more life I have now that I have transferred my pain coping skills into the rest of my life…Ok, so you want examples?  Well, I can give you one HUGE example that has been the biggest change in my life, which hasn’t had a HUGE effect on my pain though because I have such great coping skills.
This past December, my husband and I adopted a baby boy.  He is our first child. We have been married for nearly 11 years now, have tried the adoption route for 6 years, and finally we were blessed with a beautiful, healthy baby boy.  We had to fly to another state to pick him up, and we got there 6 days before he was born (he was overdue).  We were able to pick him up and take him with us from the hospital when he was just 4 days old.  So we were staying in a hotel.  It was a nice hotel for extended stays.  Luckily, from the very first night with us, he slept through the night 5 to 6 hours at a time (now 8 hours at a time at 2 ½ months old).  At this point, my body was faced with probably one of the biggest stresses possible—feedings every 2 hours, diaper changes, carrying the baby constantly, bouncing the baby, holding the bottle for 30 minutes at a time in the same position, burping the baby, giving the baby a bath, putting on a diaper, etc., etc., etc.  All of these things I was able to do, I just have to do them in a different way than other mommies do them.  It also may take me a little bit longer.  I have learned to love the slings to carry him close to me. I have also learned to love pillows to lay him on when I feed him and prop him up, and to prop my own arms up.  I have learned easier ways to make up his bottles and to change his diapers and even to give him a bath.  I may do things a little differently, but I get everything done and have a very happy and healthy baby boy who is thriving!
I have learned that just as I must be patient with my own body because of the pain, I must be just as patient with my baby boy who will cry a lot. I may not always know what he needs, or it may take a while to figure it out, so I must use that patience that I know so well with my own body.  I have learned to take care of the tasks that have to get done and put the others off until I am able to do them.  Those tasks will keep.  Anything that the baby needs is priority—making bottles, changing diapers, soothing his tears, playing with him, bathing him, etc.  Dusting, vacuuming, and cleaning the kitchen and bath are among the tasks that are at the very bottom of the list.  Taking care of me is very important though too. I can’t put me off because if I flare, who will be there for the baby?  That is constantly running through my mind.  I do my best to make sure I get the rest I need, to eat healthy, to take my meds, to exercise when I can, etc.  I have found that by taking care of myself, by making sure that the baby is taken care of, and by putting off the less important tasks, and letting some of my chores keep until I can get to them has kept me from flaring these past 2 ½ months. I have not flared once since we brought the baby to the hotel out of town.
I will tell you that we had some major unexpected events occur during the adoption process.  The birth family found out that I had a joint disease and wanted to back out of the adoption agreement with us.  I was devastated! For the first time in a long time, I allowed my chronic pain conditions to define me!  That was so unlike me!  I stood back, took a good hard look at my life and why we were adopting, and realized that this was what we had always wanted—to raise a family.  It was a promise we made to each other before God in our vows.  We were going to make this happen!  My rheumatologist spoke to the birth family about how I was coping so well and was very capable of raising a child.  He had no doubts.  The family decided to go with their previous decision and place the baby with us!  We were excited and nervous all at once, but we felt we were ready at this point in our lives.
Then while out of town, staying in the hotel, we had some problems with the paperwork and fingerprinting, so we had to stay much longer than anticipated.  We ended up being out of town from December 9th through the first week of January.  We had the baby in a hotel room with us from the 18th of December until we left in January!  We had to do our fingerprints in that state, and I had to redo mine 3 times while I was there because they have a hard time rolling my fingers with the ink because of the arthritis in them.  So that was more stress.  I was unable to exercise at the gym there, so I was unable to release the stress that way, which really helps me to cope better.  Our luggage got lost at the airport!  The window in our hotel room wouldn’t close, and it was winter—snow and freezing temperatures!  We asked for another room, and the desk worker said that was the last available room we were in. She said to use all of our weight and push down on the window.  Well, actually, that did work!
So with all the stress of a new baby, I’m making it because of my fabulous coping skills with having chronic pain.  I also have to say that I have never been happier.  It was worth the wait.  I love him with all my heart!  In a way, I can thank my chronic pain for helping me to be a better mom.  If it weren’t for my chronic pain, my coping skills wouldn’t be this perfected.  I wouldn’t be able to handle the daily stresses of motherhood and the unexpected stresses that life throws at you as well.  So, thank you, chronic pain!

Sunday, April 3, 2011

Help Me If You Can...I Do Appreciate You Being Round...Even If I Don't Always Act Like It!

For this blog carnival, it's our take on help. How do we  help ourselves, get help from others, or even recognize our need of a little helping hand? How do we feel about asking for help or getting some when we haven’t asked for any? Let's explore this topic. smileyIcon

Oh wow! Where do I begin with this topic? Help, I need somebody! This is so difficult for me. I am so independent. I am such an advocate for people with chronic pain and chronic illness that I lose sight of what I really need~HELP! 

The difficult part of this topic is that no matter how independent, self-assured, and secure we are, there is always a time in our lives when we feel down, fall down, have a door close in our face, and go through a life-changing event. For me, pain is constant and daily, so I have learned to live with it as a part of my life which is good and bad. It's good for me because I have learned to deal with life as a person with chronic pain, meaning that I know how to make plans and choices that fit my lifestyle. It's bad because those plans and choices will likely change in an instant. When those plans and choices have to change due to extreme pain days, weeks or months, it would be smart to ask for help. However, the stubborn side of me will almost never ask for help. It's not that I don't want it or need it. It's not that I think people like family and friends should be able to read my mind and automatically know when my pain is so bad that I have to start canceling things. I always feel like it makes me weak. Silly isn't it. The reason I think this is a silly thing is because here I am living with several pain conditions daily, which makes any person that does this strong, but I can't find the courage inside me to ask for even a little help.
This week, I was so stressed out. I went off my fibromyalgia medication. The pain was severe. I was so tired and fatigued but couldn't sleep. We have a 3 1/2 month old. Need I say more? Actually, I will give you a little more info. My hubby, baby and myself all live 9 1/2 hours away from any family member. We mostly hang out here with the hubby's friends from work, which have in turn become my friends, and I have made a few friends of my own as well. I feel bad asking people from his work for help because I don't know them that well. I also hate asking friends for help because I would rather help them. So that leaves the hubby. I guess I got so stressed out from not asking anyone, including my own spouse, for help that I lost it. I told my hubby that I couldn't do any of it. It was too hard. I was behind with getting bottles made, doing laundry, running the dishwasher, going to the store, sending birthday cards out, making meals, and putting stuff away. I couldn't or wouldn't even admit that it's been months since I cleaned, dusted or vacuumed the house! I was wearing the same clothes for the third day in a row and hadn't showered in I don't know when. I needed help!

He literally said to me that he couldn't believe how helpless I had become! I was furious! I was not helpless, and yet I was because I wasn't asking for help! I don't know if I ever looked at the word that way before, but at that moment I did. I was helpless. I was not taking any one's help or asking for any one's help. I was helpless! He told me that he wasn't a mind-reader. He couldn't tell what I needed help with unless I asked for it. Ah! That is the secret behind asking for help, you see. Help doesn't just come to you. You must get the courage up and ask for it. He told me that he just assumed that I had everything under control and didn't need any help. He said that on the outside looking in, I appear to have it all together. Hmmm...interesting, to say the least. It's kind of like our pain conditions. We look just fine from the outside until we let people know!

I realized this day that I had it out with my hubby, after he called me helpless, and then I felt hopeless for a while until I really got my senses together. To ask for help will only help keep us independent. Here is where I'm going with this...If we don't ask for help while our world is crumbling around us, and we lose all sense of reality until someone has to literally take over for us, that is not the answer. If we see that the foundation is beginning to crumble, we should ask for someone to please help us to strengthen it again so we do not fall apart and lose everything that we ever were or ever worked to be. It's kind of like when you press the refresh button on your computer!




Walk Team

Walk Team

2012

2012

2012

2012

Belly Dance

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