Well I laid down to take a 15 minute nap before I was going to head to a church function and when I opened my eyes again it was almost 9:00p.m. Most likely because I was up most of last night in so much pain, sleep didn’t come. I think I feel asleep sometime after 1a.m. but then was awake again by 4 something. Love those nights….
My medical file finally came in the mail today!! All 477 pages of it!! Its my small book hehehe. I felt I should have a copy of it just in case I ever needed it…the hospital seems to take forever to send them to my doctors so at least now if I need a test result I can give them my copy. Woohoo!!!
Matt and I have been doing a lot of talking and we think we figured out what we want to do. Our first priority is that we want to become advocates for RA mostly because that was my primary diagnosis, of course we want to also help bring Fibromyalgia to light because it is soo new as well. We want to accomplish two things 1) we want to advocate for a name change. Why? The name RA is sooooo mis-leading….I can’t tell you how many times I tell people I have RA and the first thing out of their mouth is “oh I have arthritis too.” And it is so frustrating because really yes it is arthritis (inflammation or joint pain) but it is so much more..it is an auto-immune disorder that requires a shut down of your immune system….that is A LOT more than taking Ibuprofen or Alleve to not hurt. Not that Osteoarthritis (the most common “arthritis” ) is not painful or serious because it is but RA needs a cure and we need a cure NOW! We think that one way to bring more research to it would be to encourage a more accurate name. We know that anything with “cancer” or something like that on it gets an automatic response both in research and support…names like arthritis tend to not.
Our second priority is to get more RA research going, perhaps even encourage researchers to find what actually causes RA. In order to successfully treat something you really need to know what starts it. Although my hope is that they can find a treatment that does not require such harsh drugs…hopeful thinking right!
My biggest hope and prayer is to continue to be able to support, encourage and love on others who need support to fight through their illness, life struggles and all that life can throw out you! It is VERY hard sometimes to deal with what life hands you – be it death, loss of a job, issues at home, or even fighting an illness. I remember when I found out I had RA..I was stunned to find out that this would not go away (aside from miraculous healing which I do believe in ). The words “no cure yet” kind of equal with “terminal”…very overwhelming!
I remember praying through my first two years of graduate school to find a population/speciality in counseling that would be unique for me. Half way through I realize how intrigued I was with death, dying and dealing with trauma…and then I found out I have RA. Grief is part of dealing with this type of disease..sad to say but my interests match the needs in my life too. Gods’s plan? We shall see! I know that while I pray in part to be healed, I also pray in part to be able to be used by God through this to touch some one else’s life too!