Tuesday, January 21, 2014

Battle Of A Lifetime

September 8, 2011

I have decided to vent my feelings on my blog once in a while. I figure it’s a good way to document what I am going through. Maybe in some ways it can help others who face the same disease or something similar. My hope is that my journey in finding answers will be a stepping stone for the future generations. My great grandmother had it and learned to walk again. Now I have it and some of my cousins.

My journey has been a mixture of searching for answers, going from doctor to doctor and even traveling around the US to visit well known doctors. I am desperate to preserve my life and won’t accept that my only option is liver/ kidney failure and many side effects from medicines. I plan not to give up hope that there is something better out there for me. I am not going to say whether my journey is right or wrong for others, but I do plan to document what I have done and tried. I hope my journey is not in vain. So far, I believe it is not. We have discovered more findings with lab work along with the RA and I am seeing improvements each day. I just hope it continues.  For now I just want to explain the severity of the disease in itself and a bit of what I have gone through over the last 11 months. I had planned to write a journal every day, but I got so frustrated at times when there was months of depressing stuff to tell, so I stopped.

 I call the last 11 months, pure hell………

Rheumatoid Arthritis:

It’s weird how life can change so dramatically from one day to the next.  You don’t necessarily see it coming either. I have learned, some things we have control over and some things we don’t. I never imagined to the extent of what I would face as one of my trials or challenges in this life. Not having that control especially over what your body does is the most frustrating thing in the whole world. With Rheumatoid arthritis I learned control, at times is out of my hands.

The disease started sudden and fast 6 years ago and came on strong the same way again this year. It was at its worst around February, March and April. This time around, I was scared for my life. It got so bad, the doctor, Kent and I worried my organs we’re affected by the disease and would begin to shut down. I was bed ridden. I wasn’t able to hold a conversation; I couldn’t think or speak clearly.

I felt like I was paralyzed in my upper body. The disease had moved into my spine.  I couldn’t move my neck, I couldn’t move from my back to my side when I slept. Kent had to help me, and when he did, I screamed out in pain. For every single movement was sheer torture. Sleeping was also pure misery. I remember waking up crying in pain every single night. I couldn’t even lift a bed sheet to cover my body. Who would have thought a sheet could be too heavy to lift.  I have never experienced so much pain in my entire life. Kent had to carry me everywhere.  Like to the bathroom. He amazes me, he never once complained of getting up at 3AM or all hours of the night helping me. The disease moved around frequently and was affecting almost every joint in my body. My back was hunched over from the muscles that were so stiff. I couldn’t straighten my back and could barely walk. Sometimes when I would wake up my hands would curl into fists and I would have a hard time straightening each finger one by one out again. Sometimes it would take all day to straighten them. Other times I couldn’t straighten my limbs and I would have to deal with it just being half bent throughout the day. This is some degree of what my world was like.

 It has now been 11 months. 11 months of being bed ridden. I am not sure how I kept my sanity through it all. I read a ton when I could, trying to keep my mind off the pain and what I was going through.   Sweet notes from my kids or well wishes from others kept me going.

As time has gone by some things have gotten a little easier.   It’s hard to get a cup out of the cupboard or to get something out of the fridge. I have a hard time opening any kind of object or jar, sometimes I give up and eat something else. It amazes me how heavy objects are and when I was well I had never noticed that before. The joints in my arms are getting a little better. Each time I notice I can extend my arm that much further. I walk better, but still walk inch by inch. I try not to hunch over. I still have a hard time sitting and have to get help up. I can try to walk down a stair case, but going up is a huge challenge. Kent usually has to carry me. There have been times venturing out with friends I couldn’t get up my steps and my friend pretty much had to put her arm under me and lift me up each step.  I can’t drive, I can’t get in my truck and Kent has to lift me. I can’t do laundry or clean very well, or take care of my kids to the extent they need it or how I want to. But you know, through all this I have learned to treasure the very small improvements there are. Emma was 6months old when it started and I am so thankful my kids are more grown up now. I can finally turn in bed now with a little discomfort. There is always pain, but it’s not as excruciating as it was in months past. If I have an itch on my head, I can finally reach it to some degree now. LOL Getting dressed is a challenge, but I am determined to get better at it. Holding any kind of object is hard, but it is getting better. When I get out on a good day, it takes a lot out of me, but it’s worth it and hopefully my energy will improve.

I have a greater understanding for people who have some sort of handicap. My heart goes out to them. For I understand.  I look at old people in a different light and it pushes me that much harder to fight and not give up. I just feel I am not old and this disease does not define me or will not make me that way forever. 

A feeling I have never before experienced when I did venture out in public is when people would look at me; I would look up make eye contact and they would hurry and turn their head away. I got this everywhere I went. One time I went to a b-day party for my niece and there was extended family there from my sister-in-laws side. When I went to leave the party I turned around and I saw all of them staring at me. The whole group hurried and turned their heads away all at the same time. It is funny thinking about it now.   I know they were probably just wondering what was wrong with me, but I realized I have never been looked upon in that way before. It hit me hard. I am not sure why it hit me so hard noticing that. It makes me stronger though.  And yes I do have a handicap parking space and I love it because it’s closer. LOL I also realized, a wheel chair is a symbol to me. When I look at it, the first thing I think of is that this is not me. It makes me stronger in a way. I feel I am fairly young and don’t want to accept this life right now being in a wheel chair and crippled. So with everything it makes me want to fight that much harder.

Also, one of the hardest parts of this trial is, seeing all my muscles atrophy and deteriorate.  In 2010 I worked and trained so hard at keeping myself fit. I was a runner and I loved it. It was good therapy for me in a way and it was a time I was able to think by myself. At the time I thought I was conquering the disease by running and to some degree I like to think that I was.  I was even able to run in the Wasatch Back Relay. One of my legs was 9 miles and another leg was part of the Ragnar hill. At that time that might not seem huge to some, but it was a huge deal to me.  Over the years doctors told me I would never be able to run and I was out to prove them all wrong. LOL I could run a half marathon. I felt on top of the world. I felt great and I was in best shape of my life. At the time I wish I was a little more confident and not worried about the silly things we worry about with our bodies.  It made me realize we take things like our bodies for granted. I know I did. To have been to that place of being on top of the world of accomplishing my goals to being here in the here and now was a huge let down for me. To being physically fit to then be in a situation where I was suddenly the opposite of being fit. Realizing….. I am crippled again. It was detrimental to me.   I felt like I was in this body and there was nothing I could do about it. It didn’t feel like me and I don’t want it to define me of who I am. I didn’t and wouldn’t accept it.  I am determined not to accept this lifestyle. It depressed me. At times I thought well, I can run again I can gain my muscle back. And there were other times I thought, will I be able to run again, will I get it back, let alone walk again?



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