Misunderstood

I have taken a break from writing anything when it comes to my RA and fibromyalgia symptoms and any complications of.  Honestly, it gets a little old, for everyone, I think.  I'm living it and want to escape it.  Even when it came to the blog or posts from Kelly Young, Rheumatoid Arthritis Warrior (not a reflection on her or the blog, just my issue and how I was feeling), I love reading hers, but was starting to feel like I was drowning in it and while some in cyber space got it, some of those living closest to me, didn't.  It's hard to live in two different worlds.  I am sure this happens to a lot of people living and dealing with a number of issues.  It is tough to have to think that no one really gets what ever your "it" is.

I was pleasantly surprised when I opened up the computer this morning to find a post from Kelly at http://rawarrior.com/. "This disease is similar to Lupus and no one says "Lupus arthritis." Changing the name of #Rheumatoid disease so it's not incorrectly referred to as "a type of arthritis." We are DOING it!".  I don't know what it was about that post, but it stirred something inside of me.  I couldn't wait to get the kids ready and out the door for school because my mind was racing and my fingers wanted to hit the keyboard running.

I cannot tell you how misunderstood this disease is.  I have had the owner of a cross stitch shop say to me, "I have customers who have ra and they aren't this bad."  I'm sorry, but I couldn't hold the loop in one hand and a needle between my thumb and any finger.  Either their treatment is really working for them or you are confusing this with arthritis.  I can't even hold a book open!  And that is a big part of the problem.  Everybody knows somebody with arthritis.  And many don't know or understand the difference between rheumatoid arthritis and arthritis.

I know the difference.  I feel the difference.  I am reminded the difference each time I am sent for an echo cardiogram.  Or each time I experience back pain and have to worry if I am getting another kidney infection.  When I hit a wave of exhaustion I know I wouldn't otherwise if not for ra.  The almost daily low grade temps remind me.  And of course, the relentless pain...that screams at me.  What should be simple daily tasks and the difficulty doing them remind me.

I, and many others, I am sure, am my own worst enemy.  I am too proud.  I do not want to ask for help or have to explain why I can't do something. Partially because I know, for a fact, that RA is terribly misunderstood.  It is a disease.  One that I live with daily. I often feel like, because ra is so misunderstood, that people suspect that I am just being lazy which is something I am far from.

But, it has occurred to me recently, if I don't care of myself, one of my biggest fears surely will come true.  Being a burden.  I don't want to be any more of a burden to my family than I have to be.  So I have to do some things to make this happen.  One of those (**hard swallow to clear the lump) is to embrace rheumatoid arthritis.  It is mine and all mine.  And it is up to me on how I choose to handle it.  By handle it, I mean fight it with all I have got.  And that means, making myself the healthiest me I can be even with RA.  

I don't care what anyone thinks my RA is like.  Because, I assure you, it isn't just arthritis.  What anyone can do, is get in my face and ask me what I have done to change the course of what my RA has or will do to me.  Go ahead, challenge me.  I guarantee you, I will fight harder than I ever have to make this disease the best it can be, for me.

Every time I walk into my wonderful (I say that with a smile, because I am lucky to have them) rheumatologist's office, it is in my face what is in store for me.  Would I rather have a walker or cane than a wheelchair.  You betcha.  That means, get this weight off.  Which means a healthier heart (did you know that heart disease is also a major risk and reality for people with RA?).  I understand that I may still wind up in a wheelchair, but it won't be without kick ass effort.

There will be people who underestimate what this disease really means and what toll it takes on me.  That doesn't mean I have to.  And I won't.  But I will fight for myself and my family.  When I die, I want my family to be proud of who I was and how hard I fought to be with them healthy for as long as I could.  I don't want to be remembered as a burden.  I can't think of one good reason not to fight this as hard as I can.

I have been told I have a gift in writing.  I will use that gift to heal my own wounds and continue to reach out to others.  It is so important to be and feel understood.  The link to the following song and lyrics speaks volumes to and about myself as well as many others.  I am not sure how it ties into this post but I found it going round and about in my head as I wrote.  I think that we all need to hear these words sometimes.