A JOURNEY WITH NO REAL DESTINATION

In December of 2010 I was diagnosed with Lupus/Mixed Connective Tissue Disorder. In March of 2011, I was diagnosed with Ehlers-Danlos Syndrome, type 3. The MCTD/Lupus Dx was incorrect, they should call EDS "ACTD", (All Connective Tissue Disorder)!
Since my Ehlers-Danlos diagnosis, I have read a few wonderful blogs that have inspired me and touched my heart. One blog brought me to my knees; I cried, my heart broke, I laughed, I smiled and I identified with this Katie's story. Reading her journey made me realize that I wanted to share my own.
Details are not something I spare and I have never been a girl of few words. I hope I inspire you, educate you, motivate you and touch your heart. I hope by writing this, I learn, understand and accept my new journey...Is there a destination?

Friday, May 25, 2012

Don't walk, don't run....Fly!!!!!


I had Prolo today and it was great, as always. I love that “stiff” feeling I have afterwards! For those of you that read this and don’t have Ehlers Danlos, stiff is a feeling that most EDSers have NO concept of! Today was fairly unusual, the procedure hardly hurt. I’m not sure if Dr. A did a different area or if I am just getting used to being stuck! Either way, it only hurt once…now that one time REALLY hurt, I actually squealed a little “ouch” and I don’t usually do that. It was quick fast and easy!
Today was my last prolo appointment at the Army hospital, from now on I’ll have it done in Dr. Amnott's new office. Dr. Amnott is retiring from the Army next week, he’s dedicated 28 years of his life to Uncle Sam. He’s joining an established practice about 15 minutes away. It sucks a little because I get to change insurance plans and they won’t pay for “everything”  and won’t pay for prolo at all unless we fight for it. 
If you have not given prolo a chance, I highly suggest you do. It hurts a little sometimes, it is expensive and it doesn’t work for everyone. If you are one of the lucky ones it works for, it is a blessing.
Prolotherapy is the miracle that helps my body stay assembled properly. Yes, it sounds intimidating, 50-80 injections where the needle much touch bone and it all happens in about 20-30 minutes. I am one of the lucky EDS'ers, I was never in the danger zone of being incapacitated...I have just always subluxed and dislocated 500 times more than any "normal" human being, it truly interrupts my busy life! Prolotherapy has reduced the painful events by 80%. I've always said "If you can't fly, soar! If you can't soar, glide! If you can't glide, run! If you can't run, skip! If you can't skip, walk! If you can't walk, crawl! WHAT EVER you do, just please do NOT stop!" Ehlers Danlos is tragic for so many people because they let it defeat them! I urge you to do everything it takes to get your body strong, I know it is difficult when you live in pain but once you get there, it's worth the journey! I used to ABHOR going to the gym, I found my groove and now I love it! My time at the gym is one of the most peaceful times of my day. Believe it or not, I get into my little "Zen groove" and go with it...it's not meditation at its best but it works for me! I've been told it is much easier for me to get into shape because I was a competitive gymnast for many years, I partially disagree. Yes, the dexterity of my muscles must play some part of my success. However, I choose to believe my success is from making a conscious decision that this disease will never "break my stride" and because of that, I do everything I can to stay healthy and strong. Yes, I even do prolo and that has boosted my strength to levels that were unimaginable to me just 2 short years ago. I won't stop here, I can not settle, I will continue my journey, I will learn, I will teach, I will accept and I will press on...Will you join me? Let's don't walk or run when we know we can FLY!


Ila

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