My daughter may have CF/FMS...I do too.

Discussion in 'Caregivers' started by Kimerella, Jul 19, 2002.

  1. Kimerella

    Kimerella Member

    Hello Everyone,

    I am kinda falling apart this afternoon. My daughter who is 8, has had fibro type symptoms for over 2 years. I have kept a detailed journal during that time for her. Just yesterday we went to a new pediatricain. He was wonderful...saw the whole picture instead of just what she was presenting then.

    He is doing all the tests, Rhuematoid, Lupus, Brain scan, go to a neurologists, etc, so forth. He thinks it may be fibro and didn't question my motives or hers. He saw this for what it really is. I was so happy yesterday that someone was finally listening to us.

    Today...I see all of these tests and procedures and fighting for her. Just like I did for me. The fact that the Dr. finally agreed with me when no one else did...even my husband was wishy washy...looses its charm when I realize that I am going to have to take care of myself and my daughter. I am very hopeful for her. There has been some success with children...and I am hoping the same for her. But, it will be a long road. I have already taken this road myself and I know how hard it is going to be on her.

    I am so exhausted, I have been tearing up all day. Mostly from being over tired, I think. I am now in flair. She was very ill all week (vomiting, diarreha). She is doing better today and has had some energy.

    I just need someone to talk to. I know what I need to do. Tests are scheduled for Monday. Luckily, I am pretty educated so I understand things better and can learn quickly. So, I am not confused, just overwhelmed.

    I have support for myself, but need some as a caretaker.

    I hope to hear from any of you that care for young children especially, but anyone who cares for a FM/CFS loved one would be great. I would love to have a pen pal who has FM/CFS and young kids with the same. I know this is rare and so far have not found someone in exactly my position. I know they are out there. I just have to find them

    Thank you so much for letting me pour my heart out.

    I hope I will get the chance to know all of you.

  2. annee

    annee New Member

    My heart goes out to you and your daughter.
    A diagnosis can be a relief......and the beginning of the long road ahead - you know so well.
    You are fortunate (or unfortunate :( ) to have an understanding (and first hand experience) of what your daughter is going through.
    So sad for a little 'dot' of only eight to have to suffer.
    You know your road ahead will not be easy, but you will continue on doing your utmost.
    Your love for your daughter will keep you going on the tough days.

    GB and myself sort of muddle along - day to day, being there for each other.
    As little wifey and carer to GB, I have had fibro symptoms for about 18 months now. I do not want a diagnosis as watching GB go down that drawn out path, I just do not want to go there.
    But the thought is there - who looks after the carer when the carer is sick.
    When I have my bad days we both 'mooch' around the house together.
    But as yet 'touch wood' I have not been totally out of action.
    So, I share your concern re: 'who looks after the carer when the carer is ill?'
    Do you have extended family to help out?
    I guess we get some emotional strength from coming here.
    Then we log off our computers and face the reality.
    Perhaps we can help each other gain strength and wisdom.
  3. Kimerella

    Kimerella Member

    I am really not feeling too well, but I wanted you to know how much I appreciate your support.

    I tried to post night before last...and after writing a long post, I lost it, not really sure what happened but was very discouraged by then.

    I will try to write more later, but everything hurts too bad to be on here.

    I hope you are having a peaceful day and I will be around.

  4. annee

    annee New Member

    I am having terrible trouble with my computer, so my posting is a bit erratic!
    We need a new one!!!!!!!!!
    You know we will get there - wherever that is.
    You must take the utmost care of yourself, so you are able to be there for your little girl.
    hugs to you both,
  5. Renae 2

    Renae 2 New Member

    gradually developed CFS since a stomach virus she had in Feb. 1999 when she was 11/12. She was getting better, but then a doctor messed up and she got the syndrome worse last year.

    I just got through divorce from an abusive husband of 17 yrs, so I'm emotionally dealing with the aftermath of that plus the CFS issues of my daughter. What a challenge you and I have! But I know God can get us through this....cuz He's much bigger than the circumstances and loves us!

    I'm waiting for the school to send a teacher out to start some kind of homebound instruction, but D is afraid she can't do it (cognitively, emotionally, etc)

    Please share... I'm another parent who would like to hear from you!

    praying for strength & peace for us!

    [This Message was Edited on 09/23/2003]
  6. afeni

    afeni New Member

    Hi, my daughter is 15, and has fm. I have been dx'd for about 6 yrs. I have another daughter who is 12. She is suffering from depression, from watching me, then her big sister struggle.

    I'm trying to get my daughter homebound instruction, but they keep denying her. And though her diagnoses was pretty easy going, her treatment hasn't been. Right now, I'm in a flare, and I have been congested almost three weeks, and she has pnuemonia, and her back is out. And I have a son who is six today.

    I am so overwhelmed sometimes, that I feel like a pressure cooker, thats about to blow. It has devestated my family emotionally. and my husband of 17 yrs, and I love each other, but he has problems with us being sick. My house is a pig sty. Before I got sick, I wouldn't have visited a place like this. It makes us both nuts. My daughters have such issues right now. they are both on zoloft for depression, and it kills me to see them like this. My husband has left their emotional welbeing to me. I feel so drained and even ineffectual, but they assure me I'm a good mom. they just want to know whats wrong with dad.

    Sorry for putting mylifestory up here, but the relief at finding people like me is big.
    LOL Liz'a
  7. Renae 2

    Renae 2 New Member

    Sorry that I didn't come back to this thread sooner! Just found your post here tonight!... I'm glad to meet you!!...I hope you come back & post!

    Yes, it gets overwhelming at times!!...
    Are you all getting help for your health symptoms??

    My 13 yr old, with onset of menstruation, is more nauseated now (just like what happened to her sister at that age). I hope hers doesn't develop into the whole CFS syndrome too!

    Do you have extended family living near who might be able to come & help you? Or could you hire someone to help?
    My heart goes out to you! Maybe someone from your church or other friend could help. Do not be afraid to ask for help! Your family is in need!!

    loving hugs to you,