Posted by katekite on July 31, 2002, at 17:52:22
In reply to Re: Please don't give up on hope. » janejj, posted by rjk on July 31, 2002, at 16:43:41
I've felt a bit like that. I haven't had a job in 8 months, body feels like its deteriorating quickly... then one day I took the right hormone combo and felt around 80%, up from maybe 10%. More importantly it pointed me in a direction for diagnosis. The hormone is just a stop-gap measure. And lastly, it showed me that almost over-night I could be returned to the self I used to know. A self I was worried might no longer exist.
Under-neath how you feel now is probably still the old you. It's hard to remember, but that man would not want you to give up, even knowing what you're going through.
If you had to tolerate 5 years of this it would be worth it if you only could know that the rest would be 100%. It is the not knowing that kills more than the day to day pain, well at least for me.
It helped me to set a reasonable time limit. For me that was 5 years to find some way to improve life, and it had to be 5 years from the time I actively started trying. It has taken one year (a whole year) to get to 80%. If the five years had passed with no solution (and still if it turns out I have some inoperable tumor or something) I would not stay around to suffer. Along the way I have been told such horrible things as "you were born this way". Those things are not to be believed. It's time for looking for help and answers, not time to allow wayward docs to brand you as something you know you are not.
I don't believe that people should have to suffer and be uncomfortable all the time and be expected to just live with it if the condition is expected to last for life. A reasonable time period is how long it would take for the medical world to diagnose and treat a rare condition, at least a few years, and then for good measure add a couple years in case the first round of specialists are uninterested or hopelessly dumb or get on the wrong track.
If you were diabetic you would most likely not rather die than take insulin. It is hard to accept a condition that requires diagnosis and treatment when we used to be just normal healthy people. But diabetics do eventually accept that. Just like that, we need to get appropriate help. Diabetes is an "easy" disease to diagnose but it can take a year or two for most people to really figure it out because that is just the way it is. Rarer or more subtle problems take longer. Psychiatric issues take longer. Combined medical and psychiatric issues or multiple problems take even longer. If the doctors you've seen have blown you off, find a doctor you can work with. Find one who agrees you should not have to live like this forever.
Even when you feel terrible I've seen you give good advice to people and your words are rational. There is more to your 10% than in many people's 100%s. I know that 10% is not acceptable -- it's just not. But you don't seem beyond hope in any way. No more so than the people I see here that suddenly one day get a solution. It is worth it to stick it out.
I'm sorry you are suffering.
Have you been able to follow-up at all with the finding of the slow EEG? That seems to me like something to gather about 10 unrelated expert opinions on before tossing it aside as irrelevant. It's evidence of a true problem.
Lastly, if you don't have one, get a therapist just to bounce ideas off of and who can get you through the roughest spots. Therapy most likely can't itself change your brain chemistry, but a kind word never hurts the day to day living.
Kate
poster:katekite
thread:114575
URL: http://www.dr-bob.org/babble/20020731/msgs/114687.html