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About pianoman

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  • Birthday 09/22/1994

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    piano, jazz, composing, math, science, resonating messages, kindness

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  1. Hi JuneFlower, I am so sorry to hear you, your daughter, and the rest of your family are going through this challenging time. There are so many layers of chronic disease to cope with, it's ridiculous. It is like getting sick, abused, bullied, rejected, depressed and anxious all at once. It feels like a trauma forever sometimes. I became medically challenged at 8 and diagnosed at 9. Completely normal, and then just the opposite. Now I am nineteen, and feel it is almost more difficult to cope with now. I think it is because I always hang on to the "normal" parts of my life. The everyday things t
  2. My hopes are with you weathermandj!!!!!!!!!!!!!!!!!!!!!!!! I am an OCD sufferer too( along with POTS of course). 6 months ago, when my OCD at its worst, I was performing head rituals for most of the day. In that time tho, I've made a good amount of progress with Clonidine and CBT. My clonidine is 1/2 of .1 mg tablet four times a day(net of 2 (.1) mg pills). And I've taken that with my beta blocker. Ive felt great on both meds and clonidine really helped my OCD. The first couple days on clonidine made me feel a little more "sensitive" like on touch(or something a little weird, i dont really k
  3. I have been fortunate that I have had great parenting. I was always a polite kid (still am, I"m 18), so I always did the kind thing and apologized if something happened that was awkward, not my fault, but nonetheless awkward. I agree with RubyLane, in that it definitely got worse after POTS, and I think that's because of the awkwardness: something might happen where an unfortunate circumstance-like not feeling well from POTS-cause a plan to get canceled, and maybe someone gets a little upset. There's a need to feel responsible, but its one of those things in life that just happens. Life can ta
  4. My vision's never gotten dark, except right before I pass out. It gets gray and fuzzy, and I then my ears' make a high-pitched electric buzz thing. Sorry your going through that! I hope some other people can shed some more light on it!!!!!!!!!
  5. Yeah-I have had brady and tachy(though not sure at the same time). In my recent years Tachycardia has been more of a problem and Iv'e had to take a Beta Blocker which has helped incredibly! However, in my first years, when I was 8, I had alot of low pressures and heart rates. And I was passing out all the time. That's improved since I'm on 24/7 IV fluids, though. Btw, I really appreciated the labs coming back normal! That happens to me ALL the time!!!!!!!
  6. What this guy did is DISGRACEFUL! I get so tired of the things people say and do! it doesn't make sense at all; why wouldn't you want to be there for someone going through a tough time!? It's called being kind! Like someone posted earlier: What a Doctor he's gonna be! Sorry I'mapumpkin! I wish you the best on your heart surgery!!!!!!!
  7. I can really relate to what you are saying. So many people I don't think really get it, even the people that you'd think would understand more. Through figuring out the diseases I have (Mitochondrial Disease, POTS...) and being diagnosed, there have been some(feels like a lot though) doctors that haven't understood what I go through and have passed it off as "head" stuff. Consequently, when any doctors ask questions I feel like they are trying to show that I shouldn't feel the way I feel, even though I am chronically ill. Like when I say I have chest pain, the response from a doctor might be
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