CFS to Fibro to Neuropathy

Discussion in 'Fibromyalgia Main Forum' started by JimCoyote1942, Aug 12, 2006.

  1. JimCoyote1942

    JimCoyote1942 New Member

    I was first diagnosed with Chronic Fatigue and then it appeared that I had fibro. Finally they decided I had inflammatory neuropathy and short fiber neuropathy. I have been at Methodist Hospital in Houston this week receiving the gamma globulin infusion treatment. They put antibodies taken from thousands of pints of blood in your system for about five hours a day for a week. It will take a while for the results to show. I also have a non-malignant brain tumor, an acoustic neuroma, and I will have six weeks of gamma knife treatment for that. I am living by myself in a motel and it gets lonely. Fortunately I have some friends but they work hard and I don't get to see them much of the time. So any support from anyone is greatly appreciated. I like those kind words that people send out. They are usually sincere and heartfelt. I also enjoy the hugs from the ladies too. Thanks for your help.
  2. tlayne

    tlayne Member

    I am sorry that all this has happened to you. I do hope that you will see great improvement from globulin treatments. Please keep us informed. If you ever want prayer we have a worship board here where you can put in your requests.

    I am looking forward to hearing good news for you! Oh ya, and here's a hug! lol! Tam
  3. lenasvn

    lenasvn New Member

    Oh, noh, that sounds awfully boring (not the treatment, but in between). Do you have internet access?

    How mobile are you, is walking in the evenings an idea? Maybe making a routine for yourself will keep your mind of the boredom that hits.

    Make a scedule with favorite TV shows, evening walks, checking the board here (LOL!),chokolate buying spree (ok, that one is MINE!), call and harrass friend #1,2 and 3, evening bath and so on. I know it must be awful, but maybe this may create some structure while you go thru this treatment. A deck of card will take you far (at least for me)!

    Maybe invite the guys over for a game (they might want to get away from home for a couple of hours) even if you guys usually don't meet like that.

    Maybe my ideas are superdumb, I wish I could help more!

    many hugs to you
  4. Cinlou

    Cinlou New Member


    I am so sorry that you get lonely....You seem to be a very smart man, as your bio shows that you have many interests.
    I just started reading about Jung myself. I find it a very interesting read..Did you bring any books to read while you have your treatments?

    I wish you well with all of your treatments.....and..........((((Hugs))))

    [This Message was Edited on 08/12/2006]
    [This Message was Edited on 08/12/2006]
  5. findmind

    findmind New Member

    I'm so glad you wrote and let us know how you are doing. As I read your post, I remembered you said you had to be alone in Houston during treatment.

    I have always been curious about Jung. I really should start studying about him and his philosophy. Can you tell me some things you have found interesting, or what you have learned from his teachings/therapy?

    We could keep you very busy answering posts, and the time will just fly! Please keep writing, and I'll look for you, ok?

    Many gentle hugs and caring...

  6. JimCoyote1942

    JimCoyote1942 New Member

    Thanks very much for responding to my post. I would very much like to correspond with you all about Jung or whatever else you would like to discuss. I have been reading lots of psychology, psychiatry and philosophy over the last ten years, but I rarely find anyone else who is interested. I understand that there is some way to go into a chat room and exchange an e-mail address. So if you all can explain it to me, I am eager to write.
  7. Marta608

    Marta608 Member

    I've been wondering how you are. When I read your post the first thing I thought of was that you're doing a little walk on fire now.

    I'm so glad that you have a laptop and therefore a connection to friends! (I assume you do.....?)

    Is this to say that you don't have FM? Could you explain neuropathy? And what is acoustic neuroma?

    I remember when you were first thinking of doing this and how apprehensive you were. And here you are doing it!! I'm proud of you, Jim. Keep up the good work - and it IS work.

    Here's a hug for you too,


    Just read ahead (I must remember to do that...). You can agree on a time to go into a chat room and exchange email addys. It's a bit tricky getting times coordinated in different time zones but it can be done. Maybe we can take a number? Boy, that's gotta be making you feel good. lol

    [This Message was Edited on 08/13/2006]
  8. JimCoyote1942

    JimCoyote1942 New Member

    I have most of this Sunday free, so if anyone would like to set up a chat time, I would feel complimented. We can discuss whatever anyone likes.
  9. angelstapleton

    angelstapleton New Member

    Sound like you have so much going on. I will pray for you if you don't mind. I have fibro and I know how hard it must be for you. Just try to keep your mind on other thing if you can. Like reading or writing .
    I hope all turnes out well for you . Please feel free to talk about how you feel any time you please>
    Bless you Angel
  10. lenasvn

    lenasvn New Member

    into your profile and realized cards is out of the question,,,LOL! I noted the spiritual interests, which excited me. Cayce, have you read anything about him? I love psychology and spiritual philosophy too, I find myself in the same seat with few people to battle thoughts and ideas with.

    I have to go, I have to jump to the computer in short spurts during the day because of my children. The only uninterrupted time I have is in the evenings after 9 PM- sigh.
  11. JimCoyote1942

    JimCoyote1942 New Member

    Yes, I read a biography of Edgar Cayce and a couple of other books as well. I have also read widely about psychics. I do believe some people have psychic abilities. As for me, I am not psychic, but I have some good intuition. I have a strong feminine side and that helps me to understand. I also am highly sensitive--sometimes too sensitive for my own good--and that helps me see into others. I try to work on this. The books say everyone is psychic and can bring that out in themselves. That is what I hope to do. I try now to focus in by looking deeply into a person's eyes and listening to every word. I also watch everything about the expressions and body movements.
    I know a lady that says she can see auras on occasion. Usually this is in times of real distress or great joy. Do you know anything about this or have you had any experience?
    I do thank you for writing and conversing. I hope to hear more in your spare moments. I will look for you tonight around nine. I am not sure of your time zone, so I will check at other times. I am in Central.
  12. winsomme

    winsomme New Member


    i hope you get a boost from the IVIG. some people with CFS have had good response to IVIG.

    here's sending you some positive vibes form MA. we all could use some positive energy, i think.

  13. lenasvn

    lenasvn New Member

    Maybe a little late? We'll see.

    Do coyotes and wolves get along? LOL!
    [This Message was Edited on 08/13/2006]
  14. Cinlou

    Cinlou New Member

    I am very interested in exchanging ideas about thoughts we have on books, etc...I am reading a book by Carolyn Myss...along with Man and His Symbols.....have you ever read Messages From Michael?
    I have quite the library of books on many subjects from Astrology to Zeth...I have a friend that wrote a book on Reincarnation, (he crossed last year)it has not been published though. I think it is up to me to do this.. I miss him very much, we were kindered spirits...

    I do not know how to work the chat....I will need to learn...I am In Pacific Time..I think...California. My uncle lives in Spring, my mom was born in Brownwood, are you familiar with these??
    PS I have read and own books on Edgar Cayce, too..

    [This Message was Edited on 08/13/2006]
  15. Cinlou

    Cinlou New Member


    FOYBOYFOY New Member

  17. Kay31

    Kay31 Member

    Being alone in a motel "ain't" fun while you're havin these treatments. Good luck to you.

    Read in your bio that you believe people have psychic abilities. I had that proven to me. There was a time when I went from one so-called psychic to another who were nothing but frauds. It reached a point where I was totally turned off.

    THEN, I met a true psychic; she never asked for money and most people received messages from her on the phone. Over the years, we became friends. She was "blessed" with this ability as a child. I can't believe some of the things she told me....for example, I was at work and phoned her; she said she saw a beautiful blue owl on my desk. And I DID have a beautiful blue porcelain owl on my desk. She said she didn't know why he was there....perhaps to impart wisdom. She told me other things that were "right on the money."

    I think we're all gifted to some extent. Think of the times our "what ifs" actually happened.

    Enough prattling, you have my prayers for recovery. Keep up the good spirits....and hugs galore.

    [This Message was Edited on 08/14/2006]
  18. tata1580

    tata1580 New Member

    I agree living in a motel room must not be the most pleasant thing in the world but then again not the worst either I guess...I like the maid coming in everyday

    I hope all works out well for you!

    I am also very interested in the psychic world..Maybe we should start a weekly meeting on that subject...I would love it!!

    Take care

    Here is one of your hugs..

  19. tata1580

    tata1580 New Member

    for more hugs
  20. 69mach1

    69mach1 New Member

    i wish you all the best...i have to start college over my tender age of 41 years...anyways..i get to take general psychology over..they will not accept my classes from way back...

    get well!


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