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I want out

Discussion in 'Help Me! I Need to Talk to Someone.' started by hurttoomuch, Feb 10, 2010.

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  1. hurttoomuch

    hurttoomuch Member

    All I can think about is getting out. I'm stuck with a very painful, relentlessly progressive, and debilitating disease. No medicine is effective in controlling the symptoms. I cannot find a neurologist who will treat me as they say they have no experience with this and to find someone else. I am becoming paralyzed; I cannot sleep (9 days was the worst). I spend my days and nights watching tv and surfing the internet. Going out is a huge endeavor and greatly increases my pain. I did not realize a person could hurt so much for so long. It has crushed my spirit. My ex divorced me and left me destitute (he hid money for almost 4 years w/o my knowledge prior to replacing me with a "new and improved" version). I was undiagnosed at the time, so he thought I was faking my neurological problems for attention. I lost a job that I loved (my former boss hung on with me until I could not do it anymore, and he let me decide when it was too much, bless him). I need constant distractions to cope, but I cannot do much. There's 2 reasons why I'm still here. My son would not understand. Also, I tried once (what PEACE I felt when I downed all those pills...) and, obviously, it didn't work. Interestingly, my parents get it (mainly because I had to live with them for a few years so they saw how bad things are). I want to walk, drive, work, sleep. If I had one wish, it would be to have my health back. I'm so sad when I see someone just strolling down the road. I want to do this and I can't. My limbs burn with scary random electric shocks up to several times a minute which can make my leg or arm jump. I don't know how bad they will be at any given time,and cannot anticipate what to brace for so my anxiety level is high. Last year, I was hospitalized with a severe septic infection related to my illness. Because my disease is so rare, at first the doctors thought I was exaggerating and sent me home after a week (with a 103.2 fever, yet). I almost died that night. A friend called an ambulance as I was passing out and they "saved" me after 2 more weeks in the hospital. Even my friend understands now why I don't want to go on and feels bad about calling for "help." Why just exist in intractable pain? I want some semblance of a life and that's not going to happen. I have become PAIN. It's just too hard to fake it around people for any length of time (who get tired of the drama). Why do people want others to continue to live under any circumstances so THEY won't have to experience the pain of loss? That thinking seems as "selfish" as suicide. We put animals down when they are severely messed up, but humans are supposed to go thru he** at any cost until we expire. I just don't get it.
  2. WildCherry

    WildCherry Staff Member ADMIN

    I'm so sorry for what you're going through. :hug: I know words can't really help in this situation, but I wanted you to know I care.

    I guess you've already done this, because you've probably tried everything. But have you done any online research to see if there are any doctors anywhere in the world who treat or specialize in the disease you have?
  3. total eclipse

    total eclipse SF Friend Staff Alumni

    I understand your pain as i continue to have neurological pain r side my foot never stops jumping and the pain is horrendous at times. I keep taking pain meds but all my test come up with nothing really. One gets tired of the constant pain I am still working with it but find it so hard. I think your son will always need you You are there emotionally for him and in other ways Spend this time knowing you are helping him by just being here. I hope the doctors can teach you how to cope with the pain as i know it will never leave. I have tried everything accupunture therapy everything and it is stillthere a nerve constantly jumping take care okay enjoy your sons company as i am sure it brings you some release.
  4. hurttoomuch

    hurttoomuch Member

    Hi, thanks for the quick replies. I live in a large urban area, but even with health care teaching experience (I used to be a lead clinical instructor for dental hygiene) and health research skills, I have already had all the treatments that are recommended. The sleep neurologist said he was out of medications and ideas. At least he was honest..

    I have had some doctors recommend things that are contraindicated (they were treating me without informing themselves of the expected outcomes and using outdated treatments, further causing physical damage). My neurologist abandoned me when I was in the hospital. I'm reporting her and the hospital to the Dept. of Health as that's illegal. The university medical school said not to bother with making an appointment(!) as they did not have a protocol for treating me...

    I have stage IV Reflex Sympathetic Dystrophy (~see stages of RSD in the website, rsdrx.com). The closest place that knows anything is 2 (large) states away. They require all the $ up front and my insurance doesn't cover it. It's mainly for improving mobility. They cannot do anything for the pain. I hurt so much sometimes it makes me vomit. Some people locally who also have this "orphan" disease are trying to organize so we can visit the same facilities and get people to take us seriously. Or, we'll all go down in flames. I just want to go quietly away.

    Violet, you make a good point. My son (just 20) is an only child and I'm MOM. I will do whatever it takes to get myself together when he visits. He's got some severe food allergies, and I make him goodies that resemble the "good stuff" that he can't eat, and he can't get anywhere else. I know he really appreciates it. Thanks again for the thought, I am in a better place just thinking about him. He means the worlds to me.
  5. IV2010

    IV2010 Well-Known Member

  6. Stranger1

    Stranger1 Forum Buddy & Antiquities Friend

    Do you have a pain clinic there?? Maybe they can give you some releif from the pain..
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