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Showing posts from April, 2011

AS you can leave now

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April is Ankylosing Spondylitis Awareness month--wow! mouthful! Here we are halfway through April and I've really done nothing. Why? Because I have AS! Simple for me to understand and for those that have the disease. Not so simple for those that don't. I would never wish this terrible disease on anyone, but everyday I think "I wish you could understand". I guess it's not possible for anyone to truly understand unless you're going through it--hence the difference between empathy and sympathy. Tomorrow I go for "round 3" of my Remicade infusion--am I excited? um actually, I wish it were now! I've not had any relief so far and I'm hoping the "3rd time is the charm". I'm also hoping for no complications when I whip out a new insurance card-yes, TOTALLY NEW INSURANCE! This literally is a nightmare for someone with my type illness. So for now, I live with AS. Here's my AS awareness---What I'd like for YOU to know-- Every morni

AS is "life altering/changing"!

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When one has AS, "life" plans quickly change! I say "life" because it's everything you do...it's simply "doing life" that changes! Everyday you select the type clothing for the days activities or events..when one has AS, we select clothing on how much pain our body is in that day. Do you dread certain days/things...with AS, I dread methotrexate! I sometimes put it off a day just because I hate it so. I know I shouldn't but I do. :( Do you "think" about what will hurt when you're intimate with your spouse? Yea, with AS the pain NEVER stops...so "it's" always on your mind no matter what you're doing or where you are. Do you ever think, I need to move because of a disease??? My home is beautiful. We love it, but..here's the but, it's 3 levels! Stairs to even come in to my home, so I've often stood at the bottom of the deck looking up and thinking--how am I going to get in the house? Have you ever wondere