Quote:
Originally Posted by cricket52
Hi bobcat:
You are a very gifted writer, you sum up what many of us feel.
Limbo is not a good place to be, especially when you are a Type A who needs answers. We all need support.
Sadly, many of us can't get the support of those we love. That's why there are these forums. It was my MS neuro who suggested finding a good forum - this is one - and they has been my lifeline. It is where I come for comfort and support and friendship - people on the forum go my speed.  I get my questions answered and my bad days, my angry days understood. My family can't help me, they expect me to help them, and I can't always do it.
I don't know what to say except some of us understand. The last 10 years for me have been tough. That's when I went on disability. Living in Canada my medical care and drugs are paid for, I can't imagine the discouragement you must feel, for you deserve decent medical care and without insurance how can you possibly get it?
I can no longer play the piano or organ, or follow a knitting pattern or read a book. I cannot walk the many kms. I used to love. I sleep too much and struggle with pain and the irritability it brings. My marriage ended after 34 years because my husband didn't have the wife he used to. My bowels keep me inside more than I would like. There's more, but what difference would it make? All the tests rule out everything.
So we sit with a dx of possible/probable MS, the uncertainty reminding us daily that our bodies have betrayed us and the medical community has no answers. Sympathy from them? Maybe. Or maybe they think we are part of that group of psychiatric patients who can manufacture symptoms. For me that's how it feels.
Sometimes there are no answers, except that 5% never show lesions. That's not much comfort because we are back at square one - limbo.
Time helps a bit, just not enough. I too want an answer - any answer. Sadly I don't think it will be forthcoming any time soon for me or my friends on the forum I frequent.
Courage isn't a one time thing - it's a daily act of the will, like love. Your gift of writing will help others here and in turn, they will support you.
Hang in there bobcatsrule - you are among friends. I truly wish you had the money to get the help you should have. It's not fair. |
Thanks cricket! You truly understand where I am coming from! I often feel too that i am like that. Viewed as the crazy symptom factor that belongs in a psyciatric ward rather than the real world. the good and weird and i do mean wearid thing about america is that in someways it is almost better to NOT have insurance. that is if you are resourceful. I happen to be one of the resourceful ones.
i have only been researching MS and things like that for 2 days now but so far, it is the thing that makes the most sense to me and even if i don't get dx with MS i will probably continue with this forum b/c 2 reasons.
1) i understand a LOT about the disease now (hey i took 5 physiological psyc classes in college. what can i say i'm a research/physio nut!
)
2) weather it is MS or probable MS or what not most of the symptoms that i have seem to match this constilation of symptoms and so there are people here that understand me no matter how
crazy i seem to be.
It is comforting to know that there are people out there weather it ends up being my dx or not that understand me for who i am and don't judge me on my bad days and who don't mind long "emails" (posts). I feel safe here, i feel understood here and i feel like i am a human being here not just a psyc ward inmate in a body that doesn't understand me and in a world that thinks at times that I'm crazy. i say a body that does not understand me becuase i have dreams, i have goals i have life to live and i can't seem to get that across to a body that has declared mutiny!!!!
it is scary living in a body that is a little more than slightly defective. I have always enjoyed writing and I appreciate the complement! some people (him who was my major professor in college but is now just an awesome friend and used to get bombarded by my "eloquent"
discourses in writing, via email) didn't always take to kindly to being bombarded but it is nice to be appreciated.
I enjoy life, and if i can get my body on board
then I think I'll be ok.
friends are a
and precious
possession never to be taken for granted.
Sincerely, Rachael (bobcatsrule)