Friday, May 27, 2011

If you don't care about AS, just don't read

I'm warning you now--that this is a blog for those who truly want to "try" and understand about AS or those of you that HAVE AS.

Do you ever wonder if it'd be easier to say...I have cancer than AS??? And I don't take that statement lightly. Just over a year ago I lost a dear cousin to cancer. She was my age..married, children. One of the sweetest ladies EVER! But, those of you who have AS...you know where this is coming from!! "People", for what ever reason, understand cancer. Maybe they don't understand it totally, but atleast they accept it and try. With ankylosing spondylitis, "people" just don't care! Let me quickly say, my family DOES care. But, I don't really think "people" care.

I also think ok, if "it" were cancer, then I could go through the treatments and be done with it--whatever the outcome. Whoa...you say/think. Yea, I'd be done with it. It would be defeated one of 2 ways--and being a born again Christian, I'm good with that. I can't defeat ankylosing spondylitis. AS will win everytime!

I will LIVE with AS MY ENTIRE LIFE! Again, not taking cancer lightly. But, "people" fight for those with it. "People" do things they usually don't-like raise money, or walk for it. "People" understand it.

-Did you know that 2.4 million people are affected by spondylitis? That's a LOT of folks "people".
-We've all heard about Cystic Fibrosis, Lou Gehrigs, and Multiplescloris, but AS affects more "people" than these 3 combined.

So, why the "not so happy" post..cause I think "people" should at least try! Isn't it funny the comments that come back when you tell "people" what you have. um yea, being a bit sarcastic here. My favorite 2, oh, it's just arthritis and the ultimate, atleast it doesn't affect your insides/organs. ooh, kay. Obviously you HAVE NO IDEA!

So it DOES affect the "insides"...heart, lungs, eyes...and this picture is one that I thought wouldn't gross you out too much. You should see the eye pics that I should've posted!




Ever seen a sweet old person stooped over...yea, that comes from the inside and it's not just "arthritis". You think I want to look this way??? Would you????







So do I think cancer would be easier....sometimes I do. I know that statement probably will make someone mad, but yea, sometimes I think it'd be easier to explain and "live" with.




The only cure that I will experience will be a heavenly one! Now, while NO MAN can predict when the end of the world will be (yes, that was intentional)---I can rejoice in knowing that when GOD DECIDES to come back, I'm ready...and you can bet that I'll be "DANCING IN THE STREETS"!


6 comments:

  1. Meloni,
    This took an enormous amount of courage to write. You've said out loud what so many of us feel and debate internally - can we feel this way - can we share these feelings in some way for "people" to get it. You just did. I thank you from the bottom of my heart for it.
    xoxo
    Jenna

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  2. Well said,and thanks for your honesty. AS is bad enough in it's self, but it is the other bits that are hard, people not understanding, the knowledge it will only get worse, never be cured etc etc etc. I am very bent and now I just get felt sorry for having a "bad back".....sigh

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  3. Thank you for speaking out and posting about AS. I too have issues with other organs, including DRY SKIN, MAJOR EYE issues and it all stems from my AS. Its been a 11 year battle for me, and I know I only have decades to go. Way to STAND TALL!

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  4. You are incredibly brave for posting about your struggles with AS and I'm sorry that people responding to your blog are not being supportive. As a fellow AS'er I applaud you for speaking out and letting people know that it's a difficult road to be on and to see you traveling this road with so much grace is very refreshing.
    Stand Tall, my friend!

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  5. You are one of the strong people we all need to know. you have said what I have thought in my mind before. If they could just see my pain...i almost started carrying around my medical records just to show people "see i am sick" Thank you for being such an amazing everything. keep up the good work

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  6. So you are saying that AS has won and will continue to win. I don't try to explain to anyone anymore, I don't live my life thinking only of my AS. As a friend of mine just recently said,"I have AS, it is not WHO I am." I agree with her. AS does not define who we are. We are a small majority of people with a disease and to even compare it with cancer any anyway is just freaking wrong. I think it is time for the advocates to get off their pity pot and get on with life.

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