diagnosed with lyme disease, plz read, I need some hugs

Discussion in 'Fibromyalgia Main Forum' started by Kimelia, Dec 28, 2006.

  1. Kimelia

    Kimelia New Member

    Hey everyone. I finally know what's been making me sick. Been sick for 13 years. I'm so ill these days and so overwhelmed and tired I don't even know where to start. It explains so much of my physical symtoms and anxiety. I thought I would be glad to know, and I am but I still feel so....scared. I guess it's because I'm having trouble working just 5 hours a week. I need to work more then that but even working that pathetic amount is almost undoable. Some days I can't even drive myself to the doctors office. I feel more pressure to go to the doc now that I know what it is. They tell me I need to be there everyday if possible.


    I would like to just stay home and rest. By the time I drive there, get my treatments deal with rush hour traffic(in a stick shift!) , I've been there as long as if I'd been at a full time job. Then have to deal with Being sick is hard and exhausting, being sick and trying to get well is a full time job and then some, lol.

    Before I go into the negative stuff I just want to say that I do have people in my life who love me and are there for me. I still have a lot of things to face alone but their supportive words and hugs help get me through. Those are the things to appreciate. ANd I guess I wish my family could do that.

    Most of my family don't care they have made that clear. The exception of my brother who told me that maybe the rest of the family maybe upset that despite being so sick I somehow(honestly I"m not sure how, probably like many of you) always manage to have a roof over my head, food to eat and a car to drive with gas in it. I just don't really get it. I mean...Do they get it? They know how serious lyme is :eek: My health has had some serious complications and now I am having trouble walking. Heck, I'm having trouble getting my clothes on in the mornin like the rest of you.. Emotionally, it hurts... I Don't even know how to react. I try to think what I've done to deserve this treatment and lack of concern. I think it must stem back to growing up in an abusive home and the messages that are all circling back to me again.

    I actually even feel guilty for lord knows what. Oh, I know, I feel guilty for needing them to care. I feel like I'm weak to need their emotional support. A kind word. Like, am I a wimp or something. I'm not a rock. They don't even acknowledge my health stuff. Why am I trying to figure out what I've done, or how I'm wrong. I called my sister to talk to her about it. When I told her I have lyme the other day she never even said, wow I'm glad you know after all these years, now you can get treated, NOTHING. Until a few minutes later when she said she just didnt care about anything! She didn't say that specifically towards my situation but none the less it made its point. Finally, several days later after thinking about it and how i didn't deserve her to care i called her today to tell her that my feelings we3re hurt, and ask her if she cared. She ended up yelling at me and hanging up on me. AT one point i told her "I'm not askin for sympathy, i'm asking if you care". Her reply was, you must be asking for sympathy since you are on the phone at all. She even started talking about how she spent an hour on the phone with one of her freinds the other day trying to figure out how to tell me some issue she has with me. I dunno, if it was her I wouldnt be looking for negative things. I don't ever ask her for anything. I called her back a few minutes later, told her on her answering machine that I love her, i don't get it, and that maybe we just shoudlnt' talk for awhile. I have always numbed the pain when hurtful things happen. I don't want to do that anymore... I don't know what to think, feel. What I'm supposed to think or feel.

    I feel so overwhelmed..

    ANyone who is still reading, thanks for taking the time to read my stuff. I think I partly needed to rant but any input would be nice.

    ALso, if you are still reading and you have lyme or are knowledgable about it, I would love any input you may have through experience.
    [This Message was Edited on 12/28/2006]
    [This Message was Edited on 12/28/2006]
  2. susabar

    susabar New Member

    I am hoping that your Lyme DX is cured and that you don't have FM after all !!! This could be a good thing.... our doctors rule out all of those illnesses before diagnosing FM. It sure would be better to just have something and be done with it. NOT to lighten Lyme disease however.... it can make you very very ill for a long time.

    May God Bless you [[[ hugs ]]]

    Susabar
  3. AllWXRider

    AllWXRider New Member

    FYI...there is a Lyme Disease message board...did no one respond?

    Also, there is a Transfer Factor that does target Lyme disease. Immune Transfer C. It also targets Epstein-Barr and Cytomegalo viruses. Usually, when our immune system is down, we get all kinds of stuff. The stuff is expensive but for my Epstein-Barr it really "kicks". There is also a Transfer Factor message board, but this one is more active.

    Many CFS/FM ppl seems to also have symptoms of mercury toxicity. I match them rather well. It wouldn't hurt to research your symptoms against it as well.

    I would also consider systemic enzymes. Dr. William Wong N.D. has done a lot of pioneering research in immune research.
  4. spacee

    spacee Member

    Wow, you have been through alot. Alot of us have few, if any people who understand. It seems to me that the worse we are, the more people distance themselves.

    I have been ill 20 years. Profoundly ill at first. Lost every friend I had. And I had some friends that I was extremely close to but they dropped me. Oddly, they kept in touch with my hubby.

    Now I am better and they are beginning to try to make contact with me. I will have NOTHING to do with them. I would rather be friendless than to be around these people. (But I do have a few new friends).

    Anyway, I know I am ranting. Your thread touched a sore spot in my heart. Your letter was more about family that didn't understand. Mine didn't/don't either but some have died and others are out of state so I don't have contact with them.

    My thoughts for you would be to "take care of yourself" right now and deal with the family later. Toxic people don't aid in our healing. It is almost impossible to shake the hurt when family doesn't understand. Distance yourself may be best.

    Hugs

    Spacee
  5. pam_d

    pam_d New Member

    Boy, I don't have any advice on the treatment of Lyme disease, I'm just hoping you get a lot of responses and direction from those here who know a lot about it.

    I DO know what it feels like to get a tough diagnosis; I was diagnosed with Leukemia in March. Not sure if I've gotten over the shock even yet, there's no words to describe the feeling of a doctor telling you that grim news. So I feel for you, knowing what that's like. I only hope that you are comforted by the fact that at least you have a reason for WHY you've felt so ill all these years, and that there are ways to treat Lyme disease.

    Anyway, I can't be of much help, but as I said, others here DO know about Lyme, and can chime in with their experiences. I will pray it gets a little easier for you, and with your family, as you learn more about how to treat it. Good luck with everything & better health, I hope.

    ((Gentle Hugs))
    Pam
  6. Kimelia

    Kimelia New Member

    thank you all for your replies. I didnt have time to come check but I really needed to. I feel the hugs :)

    I am going to distance myself from my whole family, except my brother. I will also pray that God helps me forgive them so that when I get well I can love them. Not that I don't love them now, I do. But I don't wnat to be bitter. FOr my sake or theirs.


    Oh, I think I probably have fibromyalgia too. Apparently it tends to run with lyme disease sometimes.

    God bless you all. Hugs to you.......

    I didn't know there was a lyme board, I will check it out, thanks.[This Message was Edited on 12/29/2006]
  7. klutzo

    klutzo New Member

    Hi,
    I was misdiagnosed with MS for 4 years, then with FMS for 17 years before being correctly diagnosed with Lyme 3 1/2 yrs. ago. Yes, I still have FMS, but now I know it is caused by Lyme.

    I agree about family. My family is OK, but we have cut all ties with my husband's family, since their attitude of non-belief was toxic to me. You have the right to be validated, and family ties do not give anyone an excuse to treat you like dirt. Stress makes Lyme a lot worse...it actually lowers immunity, so protect yourself and put yourself first, a hard thing to do for many women.

    There is excellent info on Lyme at LymeNet. Join their flash discussion and read the Newbie links. It will give you hours of info that should help you out. Use their Seeking Doctors section to find a Lyme-literate M.D. near you, since most other doctors are clueless about treatment.

    Late-stage Lyme is not curable, but with ongoing proper treatment, you can improve a great deal and live a better life.

    Best wishes for a healthier 2007,
    Klutzo
  8. Kimelia

    Kimelia New Member

    thanks for the great sources. I will check them out this weekend.

    Yes, It will be hard to cut my family out. I mean they will think that I"m running away and think of it as a negative thing. That's waht I learned to do since they all threw me away when I was young. Argh, it's never easy even though we've had issues for years. I still have the urge to call my sister and tell her why it's best for me to cut her out, "surely she would understand" . I guess I'm a lil naive but i do know better.

    Thanks everyone. H ave a great weekend... I'm actually feeling halfway decent for a change, gonna go with a guy friend to help him pick out some clothes. He's been asking me to for a long time. I should rest but.....he needs my help. lol

    *hugs*