Wednesday, June 22, 2011

being an advocate for AS

I've been asked to join a group of bloggers who all have our "mystery" disease called ankylosing spondylitis (AS). Why the mystery?? Well, YOU can't see it--but can you??? If you look close enough, I think you can. So, I'm writing on being a patient advocate today. I started my blog because of AS. I do want people to know how it not only effects me, but my entire family.

I had NEVER heard of such a disease, but yet there are over 2.4 million with spondylitis. How have we never heard of it? Why have I always thought when I see that stooped over older person they didn't do what their mom told them and stand up straight. Mmmm, maybe they have spondylitis?!

What does it mean for me to be an advocate for AS? I feel it's important for me talk about AS (blog about it). To tell those how it's my entire families disease. To educate myself and others. To inform folks that if you truly look--I mean look--it's not invisible.

--yes, it's a "form" of arthritis. But, it's not something I got because I'm getting older. I can't take a Tylenol and the pain goes away. It can effect my organs. I know I "look" good. Thank you :) but my body is SCREAMING 24/7! My future--not sure, but I do wonder! I wonder if I'll be in a wheelchair. I wonder if I'll be blind in this right eye that's always hurting. I wonder if my back will be fused together and stooped over and that I won't be able to turn my head. I wonder if folks will stare at me and wonder what's wrong. But, if we all lived wondering it'd not be worth "living"! I'm thankful that I have a Savior that I can call out to and I'm thankful to know that when I get to heaven, I'll have a healed body! One free of sickness and disease.

For now--I wish that everyone knew about AS so that I wouldn't be asked everyday how I feel. My response will always be the same--I'm okay! If everyone knew about AS, they wouldn't ask the question because it's not ok. It sux. There isn't a day that I wake pain free. There isn't a day that I don't have to take a "time out" to rest some part of my body that is killing me. There isn't a day that goes by that I pray I don't pass this to my children. There isn't a day that I wish that AS didn't come into my marriage. There isn't a day that goes by that I wish AS didn't come into my body and there isn't a day that goes by that I wish AS didn't come into my life.

So, open your eyes, it's not a silent mystery disease. You can see it. You just have to care enough to see it.

3 comments:

  1. Hi Meloni,
    You are doing so great. I know it doesn't feel that way because of course you are "doing great" while in a lot of pain. But you are, you were one of the first AS bloggers (you've been talking and sharing a lot longer than most of us) so you are a great advocate! And... you just won a video contest put on by the SAA to help educate AS'er! Way to go sister!!!
    Jenna

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  2. Yes!! Meloni, so much of this is how I feel too. Thank you for sharing your thoughts with us.

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  3. Hi Meloni,

    really enjoyed your post. I'm going to link to it from my blog. Keep up the good work

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