Friday, April 1, 2011

AS is "life altering/changing"!

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 wondered how you could "walk" into your home???!!! Or thought if we were to move I won't be able to help. I can help some now, so we need to do this while I still can and am able. Needless to say, we've put our HOME on the market! Not because of anything other than AS! Now, what a terrible time to sale--it's a buyer market, not a sellers! But, we will not just sell for the sake of needing to sell. This is our home and if it's meant to be, it'll happen. Otherwise, we'll just stay for now.

So, it's spring break and we're packing for the beach...with AS you plan for all types of "days" that you might feel...plus a bag just for all the medication you must travel with! While I'm looking forward to heading to the beach....I also know that the 8 hour drive will be a killer-literally! You have to realize that your 1st day will be a day of recovery just from the car ride! So, there can NEVER be a quick trip--might as well not go at all!

AS is life changing! It slows you down. It affects your ENTIRE family! It affects your relationship with your loved one! It doesn't just affect the person with it.

It's life changing/altering for all!!!! This is kind of off topic--but what I hate is explaining AS and then you get the "oh, it's arthritis"..yea, it's just arthritis. My fav lately was someone saying "well, at least it doesn't affect your organs"....hmm my reply kind of shocked that person, uh, well, the medicine I'm on can shut my liver and kidneys down, and AS actually can affect my HEART and my eyes. So, I'm ending with April is ankylosing spondylitis (AS) month. Do you know what AS is? Truly??? Do the research and find out...just a few facts...

-2.4 million-MILLION-people are affected by AS and it's related disease.

-AS affects more people than multiple sclerosis, cystic fibrosis, and Lou Gerigs COMBINED!



It's time for folks to KNOW...KNOWledge is key! AS has my body and sometimes my life but I'm determined to NOT let it have me!

2 comments:

  1. You hit the nail on the head! I can relate to all of it! I think I am going to make your last sentence my theme song with just a slight change. "AS and MS has my body and sometimes my life but I am determined to NOT let it have me!" Thank you for your blog.

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  2. Hi Meloni,
    Wonderful blog post! I so hear ya on the plans for the plans - lol. We learn to adjust to a life with this disease but it doesn't mean it becomes us. I for one will not give up the awareness fight until the simple utterance "I have spondylitis" is met with true understand and not glazed over eyes or someone who thinks they know what it is and then have the answers to our "cure" Have a wonderful time at the beach - rest, relax, recoup, and feel the sun on your face.
    xox Jenna

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