Thursday, March 25, 2010

So this idea of blogging has been in my mind for a while now....but the thought of having a diary that is unlocked and everyone reading..well, that kind of bothers me. Having a disease and wanting folks to be aware is the main reason for this blog.

A couple of years ago I started having pain. Pain in my lower back and especially my ankles and hands. Nothing like little sausage toes...now don't get me wrong, I love little smokies-in a crock pot for tailgate food-not my toes. And let's not forget the dreaded "kankles" that I now have. For those of you who are not familiar with the word "Kankles"--let me define it for you. It's where your knee and ankle have become one--hence my families term-kankles!

The pain was sooo bad, my primary care doc-after a ton of blood work-sent me on to the rheumy! I was diagnosed with fibromyalgia. The husband always said, I just don't think you have fibro. On a regular visit to primary doc, she says you know you test positive for ankylosing spondilitis...ankle WHAT?

Off to a NEW rheumy who I love! After Dr. Pauls examine--yes you have AS (anklylosing spondilitis). FYI-I carry the genetic marker HLA-B27 should have been a sign for the first rheumy..but he missed it!

So, this new disease for me..hmmmm it's hard. I'm a very active type person. I'm learning how the pain is constant. What I do sometimes sets me back for a couple of days. I even come home and look at the stairs that I have to climb to enter my house and consider calling my husband on the cell to come carry me in because the knees and ankles are hurting so bad. Then I think about how bad it would hurt if he through me over his shoulder to carry my up and in. Now, don't get me wrong he most certainly could and has many of times--before AS and how I would love to be thrown over now..but AS won't allow that!

Another hard part is the people who just don't get it. I look fine! Limp every now and then. Have swollen joints. Have toes that look like little smokies. Have kankles. But, the pain is, at times, unbearable--but you will not know it if I can help it.

I have this disease but I will NOT let it have me.

So, here's my first blog! A 43 year old mom with ankylosing spondilitis (AS). Mother of 2 beautiful daughters, a wonderful BFF husband and my english bulldog! The story continues.......

7 comments:

  1. Thanks for sharing you story. (This is the T(s)U journalism side of you coming out.) I hope that your story will help 'diagnose' others who deal with this and build an online community of care for those who suffer from chronic pain as well as AS.

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  2. Hey Meloni,

    Blogging is fun...let me know if you want help making this blog a little more eye candyish...mom has fibromyalgia too...she doesn't love her doctors...and props for keeping at it!!!

    Corrie

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  3. I do hope to build a knowledge of AS, as well as help those around me understand what it is as well. It's certainly all new to me after being misdiagnosed with fibromyalgia...I wonder...how many folks get a misdiagnoses. Fibro seems to be a "catch-all" at times. I think my brother has been misdiagnosed--or not diagnosed--actually he's been told he has AS, but he also has AVN...but does he? The more I read, the more I wonder! Classic AS! Thanks for following and helping get this word out!

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  4. First....Wow! I am so impressed about your knowledge of blogging.Glad you knew how to do this. 2ndly...glad you came out....to tell everyone.So very sorry for your pain. I dont know what to do for you. You hide it so well. You always need to let ME know though honey.I love you so much! Thankyou for all your songs of love and hope.When you sing tears always come cause I know God gave you that gift.Excited to see what can come out of this. Always know I Love you. MAMA

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  5. Meloni,
    I didn't know you had AS. My mother-in-law has AS. Like you, she is determined to stay active and not let others see her pain. You both inspire me with all you do despite the constant pain. Im sure your faith gets you though on the most difficult days, as it does my mother-in-law. I'm now a follower to your blog! God Bless you, Lang, and your beautiful daughters. Dee Dee

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  6. It took me 2 rheumatologists to be diagnosed too. The first one didn't know what I had, but said it certainly was NOT AS, RA, or anything inflammatory or autoimmune. LOL. 3 weeks later a much more experienced rheumatologist said different. I am also positive for the gene and my father has AS as well. Thanks for blogging!

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  7. I just found your blog just now! I am a 43 YO mom that was just diagnosed with AS in October. I am looking forward to reading the rest of your story. It has already helped me to see that I am not alone.

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