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pianoman

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About pianoman

  • Birthday 09/22/1994

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

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    pianomaneighty-eight

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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 that I can do that everyone else can. I always hung on to this, and even in general had a positive attitude. Always just looked at what I had and what I liked, and kept moving forward. I believe the perspective I had was and is a good one, but it also has its sense of in-denial. Esp. because life's harder to avoid now with more adult transitions coming my way. (fun, fun, fun.... ) Trying to figure out your future is tough in general, but even tougher when you have a condition. And the thoughts and frustration always go back to the condition part. "I have to put extra steps and time into my health- I can't deal with all this right now- too frustrated- only me- WHY is this happening to me?" Something that really clicked to me one day and brought a crap load off my back was: Yes, this is happening to me. It is unfair, and unclear. But if you like to life, and lives, these things don't just happen to one. I can't think of one friend in my life that something tragic and incredibly unfair hasn't had to go through. Yeah, sometimes its like, man up! that ain't nothing! But sometimes it can be just as heartbreaking. I also get how it is more than one struggle. I was in OCD rituals for 7 hours a day, and worked really hard (and working hard) at CBT (Cognitive Behavior Therapy), to get in under control. Sessions twice a week with doing a lot of reading homework and strategies, to like twice a month. This was also when my mood was at its worst. I would def recommend therapy to everyone(I don't care who!!!! It works, I was a non-beliber). Just make sure to find the right fit. It sounds like your on a great track with that(and a cat!!!!!). Some other folks mentioned what I am about to say, but I think it is CRUCIAL!!!! Have your daughter find a craft. Something she is good at and can grow with in positive ways. Mine is music. It's everything for me, and now it is looking at my major for school. Wouldnt even have touched it if hadnt got ill, but my sister did it and i needed something to do quick. Yes school work is a good option too becuase it is productive, but music provides the best of all worlds in my humble opinion. Also, social time. Esp. out (if can be) in a group setting with people she likes. THIS has really helped me a lot mood wise. Idk what it is exactly, but its prob the combo of: being out, good company, and fun. I wish the absolute best to you and you family! My thoughts are with you!
  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 know the exact words to describe it), but nothing like symptoms of what I've heard SSRI's cause-i've avoided those. I'd love to personal message you, if you'd like!!! I'm a newbie, so is there a way you could pm me?!!
  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 take life away. That"s what I'm trying to realize...
  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 "when", or " what triggers it". To me, I feel like those questions are to get certain responses out of me that they are trying to correlate as to being in my head, even when they are trying to help. I'm on IV fluids 24/7. A doctor took me off for one day while in a hospital to do tests and compare those with results from being on fluids. Before he even did the testing, he had a picture painted of me; and when he did almost all the tests off fluids and everything looked ok(though I had significant low blood volume...but I think that result came back later), he was assuming I was fine. However, the toughest test was still yet to come. A cardiac output test which involves a tilt table. Since I was pretty wiped from all the tests earlier and had blood drawn, I knew I was going to pass out-I was already light headed and having other POTS symptoms. My Mom noticing this, didn't want me to do it. However, I wanted to show them I did have something wrong. So I did the test, passed out, and had my BP taken: something like 72/38, after one minute of trying to get the machine to cooperate. Doing the test and passing out was very difficult. There was a period in my life before fluids when passing out was all I did. So doing it reminded me of the place when I just didn't know when something was going to happen, and just in general felt scared. I'm not too sure if deciding to do the test in the end and there by proving what goes on w/o iv fluids for me was worth it, but yet, the doctors seemed to get it more. Man, I just don't know what to make of things sometimes, but what I know, is that there is a lot of ignorance out there. What's good for me though, is at the end of the day, the people I live with, I love; and love me. My family's great; I am wicked fortunate for them and their support!
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