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

Sunday, April 18, 2010

My Take on Marriage, Love, And That Confusing Little--No Wait, BIG Thing--That Gets in The Way; Chronic Illness

(This post was presented in  ChronicBabe Blog Carnival #2: Love, Illness and Other Confusing Things on April 20, 2010.  It was the second edition of the ChronicBabe Blog Carnival, "bringing you a big new batch of awesomely babelicious perspectives on love, sex, relationships and chronic illness...working "hard with co-organizer Fibrochondriac to create a real diversity of writing; in fact, she does a lot of the work, Babes, so we owe her a BIG thank you.")

My mom always told me that marriage isn't easy.  You have to work at it--both of you.  Of course if you have to work too hard, I'm not sure the marriage is worth it, but sometimes within the marriage there are challenges that take every bit of your strength, determination, and perseverence. If one of you has a chronic disease, you know what I'm talking about.  With the chronic disease living inside the marriage, sometimes the marriage itself doesn't get the work it needs because so much time is invested in the disease, that there is little time for anything else.

I'm going to talk about my marriage to my loving husband Jim, how we work through the chronic disease challenges as well as day to day issues that affect every married couple.  First of all, just so you know that we have experienced married life for a while with lots of unexpected events, I'll start there, then I'll add the chronic stuff to it and tell you how we handled it as partners.  We will be married 10 years on June 10, 2010. We dated for 6 1/2 years and lived together for 2 of those years before getting married. We have lived in St. Louis, MO; Lexington, KY; N. Providence, RI; and Decatur, GA.  We have had our two senior dogs for 10 years (Max, 13; Cookie, 10). They have lived in every city with us. We have been trying to adopt a child for 5 years now, since we were living in Kentucky.  We currently have no children.  We both went to college, having met as undergrads.  Jim went on to Graduate School to get his Ph.D. He is now a professor. I got my Bachelor's in Nursing.  I worked as a Registered Nurse, and my specialty was a Diabetes Educator.  I am now on disability, which is reviewed every 3 years in Georgia.

We met in college, had the same values, beliefs and religion. Our families were both huge and lived in the same part of St. Louis. Everything started out to seem like a storybook romance and life together.  For the purpose of my blog, throw out any idea you may have in your mind that life with that special someone is going to be like s storybook romance. It ain't happening!  I've said this before in my other blog--"you had me at hello" is only in the movies.

Ask yourself what causes stress in a marriage. Main stressors are finances, kids, work, moving into a new house or a new state/city, losing your job/changing jobs, school, death, and a new baby.  There are others, but you get the idea.  There is one big stressor that I didn't mention on purpose because for many, it causes so much stress that the other stressors pale in comparison, or the other stressors become even more stressful because of it.  That stressor is the big thing that gets in the way within our marriage--that thing is chronic illness.

I can honestly say no matter what seems to be going on at a particular point in our marriage, chronic illness finds a way of forcing its way between us. When we said our vows, we said, "in sickness and in health," but seriously, we never asked for this...

Chronic illness always has to be centerstage. It doesn't care if you've planned a trip for months, decided to accept a promotion with more hours, or if now is the time you and your significant other have decided to start that forever talked about family.  There are so many times that I am feeling great (remember it's all relative), and Jim has a huge work dinner or party. It is gonna take every bit of energy that I can find to over-power that chronic illness this time around.  No matter how many times it comes between us in our marriage, we are just never prepared enough for it. It is depressing, overwhelming, and just makes me so angry sometimes.

We have always wanted children, but were never able to try because of my chronic illness being in the way all the time. Then, 5 years ago, we began the adoption process because chronic illness had gotten so in the way, that my body cannot even carry a child to term now. My joints are just too damaged. Thanks again, chronic illness for your time.  I don't think, unless you actually have a chronic illness, that it is understood how much of a part of the marriage chronic illness is...Let's see, how can I really get this across to you?...

We moved away from our families in 2002. We were the first of both of our families to leave, and we moved to a city where we didn't know anyone.  We were so excited, but chronic illness showed its ugly head so strongly then, that you have to wonder if it has a mind of its own...We had no one there to help us. I had 6 surgeries in our time in that city with just my husband, myself, and chronic illness. One of those surgeries was a total hip replacement. I was 29 years old...

I tell people constantly that having a chronic illness in our marriage only made ours stronger. We only had each other to lean on. By leaning on each other, our marriage became so powerful, and we realized we had chronic disease just where we wanted it. We could do it because we loved each other enough to overcome any of the obstacles that chronic disease threw us. I have written in some of my other posts how humorous it was to have Jim help me recover from a hip replacement. He would bathe me, shave my legs, and wash my hair. I have many of my hip replacement antics in my other posts. I figure, if you can't laugh at yourself, what are you gonna do, cry?  Well, I didn't feel like crying at that point in my life.  We were just beginning this new chapter in our life together, and I wanted it to be a comedy and not a tragedy.  I figure there is nothing wrong with that.  You realize how much that person you are with really loves you, or doesn't for that matter. I know that Jim loves me, otherwise, he would have left me in Kentucky back when I was 29. I would have been OK though. I had a brand new hip, and I am a positive person. I'm glad we stuck it out together though. We only got stronger, but so did chronic disease, only to keep taking more and more of my joints.

Now I just went through a shoulder replacement. It hasn't even been a month. It's been about 3 weeks since my surgery. I'm doing OK, but I'm not as young as my last surgery, and really not as young as my last joint replacement. I'm 35 now!  Wow! I feel like so much has changed, but when people look in from the outside, they may not see it like we do from inside.  We still have the same dogs since before we were married, no kids, and we look almost exactly the same as the day we walked down the aisle.  But ya know we have changed so much. We are so strong, so much more than we were before chronic disease really gave us a run for our money.  Although I didn't actually get a diagnosis until 2002, I had been sick since I was a child. I missed a lot of school, had a horrible immune system, and always had problems staying well. But after we got married and moved away, chronic disease just seemed to try really hard to be the third wheel in our marriage.

This time is a lot tougher on our marriage, I can't lie. We are in an apartment and not a house this time around. I don't like Atlanta as much as I liked Lexington, KY and N. Providence, RI, so I'm not as happy or as content. We seem to be taking on so much. Jim is working all the time. He leaves early and comes home late. I do a lot of the housework and cooking. I take care of the dogs, and they are getting old and need a lot more care. I am involved in volunteer work at a pregnancy center and at the local Arthritis Foundation. My medications are so expensive, and I have to fill them every month, as well as go every 4 weeks to the infusion center for an I.V. We are at the waiting stage for the adoption this time around. We have never gotten this far along. On top of all of that, I'm about 3 weeks out of a shoulder replacement surgery. My right shoulder collapsed the day before Halloween. I woke up that morning, and couldn't move my right arm at all. I knew what had happened. It had happened before to my left hip, but again, we just weren't ready for it to happen at this stage of the game, ya know.  So, we had my mother-in-law come before my surgery to help out with cleaning, laundry, dishes, the dogs, etc. before my surgery. Then while I was in the hospital, she got the place all ready for me to come home. I came home to a gorgeous home--clean and organized, and she had let the dogs out every 2 hours besides. She left the day I came home, and then my parents arrived 2 days later to help out.

One thing you need to know is: don't sweat the small stuff. It's so true. I have been so worried about my home being so messy, dishes in the sink, laundry not washed, and things in the wrong place.  I don't think anyone else cares about it but me, so why be so worried about it. So I've let it go. Yes, I with OCD, who has to always be in control, etc., has let it all go.  I should know better, actually. When you have chronic illness in your life and in your marriage, you are not always in control. Sometimes it runs the show. Sometimes it decides that today you stay in bed, tomorrow you might be able to put some clothes on, etc.  That's how it is with chronic disease--so you better be ready to drop everything and cancel at the last minute, and order in instead of cooking, and go one more day in your PJ's because you just can't get around to getting dressed again.

So back to love in our marriage...You know love is there when your significant other is still there pushing through the rough times with you and chronic disease. You know he loves you when he makes sure you feel OK, when he still asks even though he knows you feel like crap. You know he loves you when he asks you all the time if you need anything.  With this crazy busy time in our life right now, I still know he loves me...He always comes home to me no matter what...He didn't leave me when he knew I was gonna have another joint replacement, and I know he didn't fancy the recovery period of the first one. I know he loves me because he comes home and finds time to do the laundry when he can, washes the dishes before they cover up the countertop, vaccuums the carpet when the leaves and flowers are brought in on our shoes and on the dogs paws, feeds the dogs twice a day everyday and gives Max his insulin after each meal--he's even getting more patient with the dogs because he knows I want him to be. Let's face it, all you people out there with chronic illness that stay home all the time, we have a lot of work to do without having a job, so when he comes home late every evening and then does my housework, I know it's not easy for him.

Also, with the shoulder replacement, I've been sleeping on the couch since I got home. It is just more comfortable for me because I can sleep sitting up. In bed, I lay too flat...He misses me sleeping next to him in bed. I miss him too. It is lonely when you have slept next to someone for all these years, and suddenly you find yourself alone.  Well, the dogs sleep next to me, so I'm not completely alone, but you get my point...

I know he loves me because he does my arm exercises with me. He gets up in the middle of the night to check on me because he thought he heard me walking around.  He takes me to all my doctor appointments. He drives slowly over bumps and potholes so that my shoulder doesn't hurt. I just know that he loves me.

Still, everyday we can't help but look chronic disease dead in the face. I have a 5 inch long incision going down my arm from my shoulder replacement. I don't even think about what it will end up looking like when it heals becaue I already have 3 scars on my legs, 4 other scars on my shoulders, and 5 little scars from my gallbladder. I don't even think about the marks that chronic disease has left to remember it by. I wonder if he does though...I wonder if he thinks about my untouched body that he originally fell in love with...Do all these surgery marks take any of that attraction away? It doesn't seem like it to me. It seems like he just loves ME!

It does seem like times are a lot more trying right now for us in our lives. Adding chronic illness to it only makes it that much harder to deal with normal marriage issues and concerns.  For instance, it is so much harder to deal with an adoption homestudy when you have a chronic illness. You want so badly to show that you are going to be good parents and that you will have no problems taking care of a child. The truth is, I'm scared to death about having a child. We know that is what we want...That is the way we have always seen it, and we won't feel fulfilled without a family.  It won't be a real family without a child or two.  I'm just scared that I will be seen as not good enough to be a mother because of chronic illness. We have overcome so much in our lives not in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationship. If you love someone enough, you will make it work together. That goes for a marriage, as well as other relationships, including special friends.

Since I mentioned these special friends, I'd like to say that because of these special friends, we have gotten through some difficult patches as well. Since my surgery, I have spent a lot of days home alone while Jim is at work. These wonderful friends, of whom I love, have brought meals and treats and flowers and taken me out of the house and just came to visit and talk with me for hours and hours.  Thank God for those that love us!

Again, I stress, we do not overcome so much in our lives in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationsip when chronic illness is a part of it!

Tuesday, April 6, 2010

Pain, Fatigue, Sleep...


I must admit that the medication that I'm taking for pain is really controlling the pain. I begin to feel the post-surgical pain 4 hours after I take my pain meds. They are prescribed every 12 hours and every 6 hours. The pain that I feel after 4 hours is not the same as the pre-op pain that I felt from the AVN where the joint collapsed.  It is where there are bruises and at the incision.

The deep bone pain is completely gone!  The same thing happened when I had my hip replacement. The deep bone pain was gone immediately after the hip was replaced.

So I must say, overall, I would say that I'm happy with the pain control.

I am very tired and fatigued. I really need to use this week to get plenty of rest and caught up on my sleep. I'm sleeping well at night as well, which has been a long while since I did that.

I was due to have my IV infusion this Thursday, but have to wait another week to give my body an extra week to heal. That will be kind of tough because my body knows and feels it's ready for the infusion.

I see my surgeon on Monday, and I get my bandage taken off and my order for PT.

Until then, I will continue to wear my sling while I sleep and go out and take it off when I'm at home.  I'll do my exercises 3 times a day that were taught to me at the hospital.

I am getting a little better every day...

Visitors...

I just have to say that my parents left yesterday after staying with us for 3 nights. My mother-in-law had been here for 5 nights prior to my parents coming as well. She came 3 days before my surgery, and left when I got home from the hospital.  I had our place totally clean and organized, ready for people to visit as well as for me to come home, knowing that it will be a while before I can really clean like that. She was wonderful!  She helped with the dogs, did the laundry, the dishes, and cleaned the entire house until it was spotless!  When I returned from the hospital, she helped me to change into comfy PJ's and made sure everything was ready for me while I was home since she was leaving that afternoon. She even had already washed and folded her sheets that she slept on.  While I was in the hospital, she took the dogs out every 2 hours, made sure they always had water, cleaned everything (even what was already clean), went into our bedroom and looked for clothes to wash and did loads of laundry and folded or hung them up, so like I said before, she left our place sparkling clean. I really have to thank her lots and lots. I wish she could come back, actually.

My parents came then. My parents had so much fun while visiting. They enjoyed their vacation. They had us take pictures of them in front of our flowering tree outside that they just fell in love with.  But they were only here from Friday at 3:30 p.m. to Monday at 9:30 a.m.  They were really only here 2 full days!
We went out to eat for almost every meal, went to every shopping center/mall, went out for ice cream, and we drove all over showing them around the area where we live. I went back on my chemotherapy medication that I take on Sundays, so I'm back to watching what I eat so I don't get sick.

Yes, I was able to do all those things with them, but I believe if no one came at all, I wouldn't have gone out to those places at all. I am so exhausted that yesterday and today all I've done is lay around and rest or sleep.  Since I have psoriatic arthritis and fibromyalgia besides the avascular necrosis that led to my shoulder replacement, now I am totally flaring. I overdid it. There is no other way to put it. I can't even put it any simpler. My parents don't see me but maybe a couple times a year though.  So they don't realize how sick I am. They don't understand that with chronic illnesses, we don't complain because it is what we live with day in and day out. So yes, a lot of times I will push myself even harder around people that don't see me as often. For my mom especially, everytime she sees me, she thinks I'm doing great and tells that to anyone and everyone.

I need to just stop and rest now.

So my mom said thanks for making her trip so enjoyable. When they were packing their car to leave yesterday morning, my mom said that she didn't think they ended up being much help. She said that she thought they were a good "distraction" from the pain and the side effects from the pain meds.  I didn't change out of my PJ's. I lay on the couch while Jim walked them out to the car.

I just wanted to cry.

I have been trying to get some laundry done today--8 days since surgery--but I have to do very small loads since I can only use one arm.


I sit here trying so hard to keep from.................................................................... CRYING!

Walk Team

Walk Team

2012

2012

2012

2012

Belly Dance

Belly Dance
Before the Performance 5/6/12
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