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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Re: Im New Here
Oct 18, 2003
Hi Lori! :wave: Its so nice to meet you! Im STILL up! Can you belive it?!? The above posts are older, but I disappeared for a while because I became what I call "addicted" to my RSD and I needed to break away from letting it not only consume my body, but also letting it consume my mind 100% of the time! (when Im tired, I talk a lot, so hold on to your readin' glasses! LOL I'm gonna explain why I went away, and then came back... :D)

At the peak of my worst flare up ever, I won Fleetwood Mac tickets on the radio. Its not hard to do at 4am, theres really not much competetion! :D I cried like a baby thinking that there was no way I could even get out of bed, much less go to a concert, and at my doctors appointment while venting, I mentioned this. My doctor, bless his heart, said "There's no time like the present to start living...Afterall, THIS may be your baseline." He ordered me a wheelchair, so that I wouldn't have to walk, he explained to me how to get my handicapped tags on my car (which I did that same day) and he talked me into takeing a few EXTRA pain killers to be able to stand up long enough to actually groom myself to be presentible, and I got out of my house for the first time (other then to see a doctor) in months.

Now, I wasn't excited about it at all, and actually just (in retrospect) felt sorry for myself and silly for the first leg of my adventure. My sister was my date for the evening, and I actually felt sorry for her too, and expected her to have a rotten time as well, just because she had to go with me... her sick, broken sister.

But I'll tell you what, as soon as I got to my seats, and was surrounded by all those happy people, and just as soon as Stevie Nicks started singing, and everyone started clapping and chearing and singing and dancing, my mood changed just a tad.....

And within' 10 minutes, I was finding 5 minute spans would go by (or as long as those 'special' songs would last that I REALLY liked) that my mind was distracted from my disease! Sometimes, those 5 minutes would turn into a whole chain of 10 minutes and then 15! It was the first time in MONTHS that I was allowed that 15 minute break that I was BEGGED God for ("oh God, please, Just give me 15 minutes without pain, so that I can catch my breath... PLEASE God, just 15 minutes pain free...") And he did!

And furthermore, What I call a miracle happened about 1/2 way through the show... I stood up during one of songs and when I did, it felt like someone had pulled a plug in the bathtub, but in my legs! *strange huh?*... They had been swollen so tight they were shiney forever it had seemed and were pitting... but when I stood up for that song, I actually felt something...It was the strangest thing.

Well, the next day, my swelling was markedly reduced and my pain levels were MUCH lower. I continued to recover from that flare every day for about a week after that concert, after distracting myself.

Thats when I told myself that I will not let RSD consume my MIND ever again no matter how painfull it insists on being. Even if it means taking a magazine, because Im in too much pain to read, into the back yard in the sunshine and get OUT of the house, I need to get out of my 'sick bed' and out of the 'sick house' and get away from the places where RSD feels right at home and keeps me imprisoned. Its so easy to slip into that place mentally where I start to focus on the fact that 1. There is no cure, and 2. Nothing seems to help the pain 3. All seems helpless, and 4. The common thread between me and all my RSD'er friends is that we're all waiting and clinging onto "hope". That "HOPE" on One day can be a blessing, and on another be a curse.

I needed to go away and wait for my mental pendulum to stop swinging and come to a nice resting place in the center. A place where I stopped preaching and stopped allowing the preaching to happen to me. (the RSD preaching... yanno what I mean?) I had to learn to live with my body that doesn't want to work with me anymore, the darned ol thing, and yet, Im mentally ready to go as soon as it decides its ready to cooperate! (remember when we didn't talk about our bodies as if they were someone else? I act like its a rebellious teenager or something thats in BIG trouble! :))

Insomnia is a sign that I have a bad flare up coming on...that stinks, but yet, I've learned to deal with it without getting all bend outta shape... no pun intended! LOL...

Anyway.. enough rambling on THIS post! (sigh...bear with me.. I have NOTHING else to do! LOL)

Big hugs cuz its a cyber one!
Leanne (Lacei2)






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