Tuesday, October 22, 2013

You can change my body, not my fighting spirit. (Patients for a Moment PFAM post)

How has my life changed since I heard the words "You have Rheumatoid Arthritis." I thought it was a mistake! I had to change my thinking I learned that RA is much more than just Arthritis. Rheumatoid Arthritis doesn't just happen to "old" people. Anyone can get sick. It doesn't matter what color, what age, how much money you have, what kind of food you eat or where you live. No matter how many times you say that can't happen to me, it can and does happen everyday to millions of people of all ages.

RA attacks your immune system and your body attacks you. You feel like you have a super magnified version of the flu that would keep you in bed for days but you don't have time for that. I didn't, I was in my 20's a mom and had to go to work everyday. Then I couldn't, I was flat on my back in the hospital with an IV drip filled with cortisone shoved in my arm.

My joints were deteriorating fast and my wrists fused on their own. This all led to surgical fusions and a knee replacement. I got an education on medications that I previously thought were used in Cancer patients. Needles, IVs, insurance companies and blood work became a routine part of my life. My once active social life is now reduced to checking my Facebook and Twitter pages. I'm are too exhausted from fighting my disease/diseases to go out with any of the people who remain after they found out I can't keep up since I got "sick." 

Your family now judges you, looks at you with either pity or disgust. They wonder why you can't do things that person down the road who has the same disease can do. You hear "maybe you should walk more." 
"Maybe you should try this medication, it worked for (insert random name here.) 

 Since I became sick people think I no longer have a brain, like somehow being sick has reduced my intelligence level. I'm not sure how or why this happened. Am I not the same person who  worked a job, was trusted to make decisions, assisted teachers in my child's school, the same person who made it through a divorce, raised kids, volunteered and did so quite competently?  I will admit to having days of being what I call "foggy" but I know plenty of "healthy" people who have days like that too.

I have always been independent and fight daily to stay that way. Asking for help is a major change and not easy for me. I find when I need help, people make me feel guilty for asking or there is nobody there. Everybody is so busy living their healthy lives they don't have time to deal with me. I end up trying to do it myself then the same people get angry at me for doing it. The sad part is the same kind of people exist 26 years after my diagnosis. My hope is that 26 years from now, hopefully sooner people will be more understanding.

Twenty-six years of fighting first one illness now several Autoimmune Diseases plus Migraines and stomach issues has taken its toll both physically and mentally. The changes these illnesses have brought into my life are endless. My body in scars from wrist fusions, to a knee replacement, to cataract surgeries from years of prednisone use. I don't remember what a day without pain or fatigue feels like. I have learned to live with both. I think sometimes the emotional effects are just as bad if not worse than the physical. I have dealt with  anxiety, loneliness, anger, guilt, fear of losing my independence, and a strength I never knew I possessed.

When I was diagnosed the medications were different. I was started on prednisone IVs and moved to gold shots in the hips along with various other old school methods. Thankfully that is one thing that is changing. There are more medication options than there has ever been and there will be more to come. I am hopeful that in the future there may be a cure. I can say with all of the negative things, I have learned strength, patience, and who and what is important to me. Things that mattered to me before I got sick don't matter to me anymore.

 It's funny all these years of going to doctor's appointments and being a patient. The irony is not lost on me. 

I have changed doctors over the years, some terrible and some wonderful. I'm lucky now to have a great Rheumatologist. Don't be afraid to change if you have one that isn't working for you. I used to be afraid to speak up, then I realized I wasn't helping myself.  

This past year has been the hardest year of my life and there are still things I'm dealing with. Through it all I have learned what makes me happy. My grandchildren bring me extreme joy and the volunteer work I do for the International Foundation for Autoimmune Arthritis. That is the one thing that makes me feel like I'm making a difference, helping someone and I'm working with people who understand. No one there makes me feel like I'm less intelligent. That is a place where we can and will make change happen together by raising awareness and providing support and promoting patient centered research to help improve the quality of life for all of us, which will in turn improve the lives of those who live with us.


 Another bright spot I received several nominations from WEGO health for the 2013 Advocacy Awards. Click on the link to nominate your favorite advocates. 

Last but not least, I realize my post is all over the place, it is a lot like my life right now. Thank you for reading and thank you for being a part of my life.


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