Changes: Living with Postural Orthostatic Tachycardia Syndrome

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome (POTS)

“If I hear, one more time, how good I look I’d like to punch somebody in the face…” LOLOL

This video was created by the folks at DINET

There are more parts (4, 5 etc) listed on you tube for that video but it actually ends at part 3 (and then starts over again in error). I bet someone with dysautonomia uploaded it haha. 😛 Thanks to whomever did.

I’ve said before that this blog is where I complain about being sick so… venting ahoy!…last week was the first time I said to myself, f*ck it, this (being alive with EDS and POTS) is too hard, I’d rather give up. :/ Didn’t last long though; just have to rearrange my support system (down to 1 IRL person LOL) & have better boundaries.I’m working on my SSDI “function report” – SSA-3373 where you innumerate what you used to be able to do compared to now, in excruciating detail. Blurgh.Last week I also made an appt with the pain clinic (next month) to see about going on Tramadol or whatever. I was reading this thread about pain tolerance & I thought back to when I had my middle finger (ha) accidentally slammed in a car door and broken in a couple places. That was about a 6 on my pain scale. I am about a 4 or 5 all the time though, so maybe I should get something? I’ll talk to my pain Dr about it. I’m getting myofascial release tomorrow and that always knocks the number down for me for a week or so.I have been hesitant to go on pain meds because I don’t want to be all stoned & also, I go to the grocery store etc a couple times a month in the car & I don’t want to have to give up driving. :/

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  • BubbleGirl  On October 31, 2011 at 6:31 pm

    I'm glad the "f*ck this" phase ended before bad things happened. It is unfortunate that the pain we all deal with can get so overwhelming at times. Have you thought of joining a support group? There must be something in your area for chronic pain, or living with debilitating illness. That may not be the answer for you, but it couldn't hurt (much) to try.I'm sending happy thoughts your direction. If you get the giggles for no apparent reason… It was my happy thought reaching you.

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