Hi, everybody -- I'm new here!

Discussion in 'Fibromyalgia Main Forum' started by kalina, Feb 16, 2003.

  1. kalina

    kalina New Member

    I am so glad this forum is here for us. There's so much to learn! I decided it was time to gett off my butt and stop lurking in the background, so I'll introduce myself.

    I'm Kalina, a 42-year old woman in Texas who has been ill with CFIDS since 1/17/98. (Yes, I'm one of those who remembers the exact day it struck.) I'm not a stranger to chronic illness -- I've also had migraines since I was a teen and the same intractable chronic daily headache I've had for the last 20 years or so.

    It was 3-1/2 years before I found a doctor who was able to diagnose me properly. This D.O. also diagnosed me with fibromyalgia, which I suspect I have had for much longer. Previous docs had told me that my aches and pains were a result of having chronic pain for so many years.

    I felt so horribly toxic and was completely incapacitated while I was trying to find out what was wrong with me. It's really shameful that none of the many doctors I saw during that first awful year had a clue. One doctor I saw insisted that, despite my general interest in life, I had experienced a "sudden attack of depression." Of course, that didn't pan out. My GP told me he was sure my symptoms would disappear simply by replacing my BCPs with a different brand. When I returned for a follow-up and informed him the new BCPs had done nothing, he said he was stumped and told me I "might just have to live with it." I remember how scared I was when he said that.

    I have watched the career I loved go down the toilet. The headaches were bad enough, but the exhaustion and the brain fog have made it impossible to be creative anymore. I had to give it all up -- my job, my design business, my dreams.

    During the last few years almost all of my "friends" have disappeared; most have simply ceased contact, and my former best friend repeatedly made such ignorant and hurtful remarks that it got to the point where it was not in my best interest to have her in my life anymore. The two or three friends I have left don't really get it either, but they at least make an effort to socialize with me occasionally (as long as I am willing to pretend I am not ill). I feel so isolated. Only my husband knows what I go through on a day-to-day basis. I realize, especially after reading some of your posts, how very fortunate I am to have him. But I know he is worn down from being my caretaker and sole support system.

    I know many of you have been living the same nightmare, so I am here hoping to offer and find support with the only people who can truly understand what it is like to have this DD.

    [This Message was Edited on 02/16/2003][This Message was Edited on 02/16/2003]
  2. catgal

    catgal New Member

    Hi Kalina~~So glad you decided to join us. I am 53 and have had FM/CFS for over 35 years and also have severe asthma/allergies, degenerative disc disease with multiple back problems & nerve damage, IBS, osteo/psoriatic/rheumatoid arthritis, and psoriasis.

    I can relate very well to what you said about feeling so isolated. It is difficult for friends & family to understand what is wrong with us and what we go through. However, you are very fortunate to have a supportive husband.

    But, you won't be isolated any longer. There are alot of caring, compassionate, and understanding people on this Board, and you will receive a tremendous amount of support, ideas, and information. At any time of the day or night, there is usually someone online here to talk to--even in the wee hours of the morning when you can't sleep.

    Others will be along to Welcome you. I know you will find many new friends here, and I hope we will hear from you often. So Glad You're Here! Carol....
  3. Debbi

    Debbi New Member

    welcome.....I'm fairly new here as well - even if you don't post a lot, you will find caring and supportive people who know what IT is. Hope to hear from you Deb
  4. susabar

    susabar New Member

    reading your post sounded heart-breaking, it's difficult for me to realize the very same thing is happening to me!!! There is a part of me that is in denial... although I have FM, not CFIDS we have alot of the same symptoms.
    I am attempting to return to my job after a 3 month leave of absence. I am so afraid of failure, I have such a lack of confidence since I crashed with this illness three months ago. There is so much riding on my ability to work full-time. My husband is disabled, and I provide the bigger part of income and all of the benefits for all of us. I feel like I am in a lose/lose situation.... if I work full time, I will have no part of me left for my children, and if I don't there will be not much money to provide for thier needs. I have gotten alot of wisdom from some wonderful individuals who post on this board. Stay with us and you will too.
    Blessings to you
  5. Shirl

    Shirl New Member

    Hi Kalina, what a pretty name! Just stopped to welcome you to our world. Most of us can relate to the doctors and to the 'friends' too.

    You will like it around here, we are all in pain or a fog everyday, none of us get tired of listening to one another, even when we have a few good days or weeks. We sort of know its coming back sooner or later.

    Glad you found us, and hope we hear from you often, again a big welcome to you!

    Shalom, Shirl
  6. Beth37

    Beth37 New Member

    Welcome,Kalina,I am glad you joined us.I know it has helped me,just to know that there are people that understand what I have been going thru.I know what you mean about losing friends,since I have had to stop working,I don't have the friends I used to have,and even if I do get lonely sometimes,I am okay with it.I feel that weren't really my friends anyway,if they are going to walk away,just because I have problems they don't understand.I have one good friend,which I call her my lifetime friend cause I know she's not going anywhere.I am not married,but my family are standing beside me even though I know they don't quite understand,they just believe in me and know I do have alot of pain and other problems.It's hard to deal with this DD,but I am glad to have this site to come to.It's helped me cope a little better.Well I won't bore you any longer.Just wanted to welcome you.Take Care! Beth
  7. EllenComstock

    EllenComstock New Member

    Hi, Kalina:

    Welcome to the message board. Glad you decided to post a message. Sorry you had to give up your career. The fibrofog is a big problem with me, too, as well as the daily pain. I was diagnosed with endometriosis two and a half years ago and diagnosed with fibromyalgia last summer, although I am sure I have had both diseases a good portion of my life. I can certainly relate to your frustrations with doctors as well as "friends" who suddenly disappear. I also have family members who don't get it either. That seems to be a common problem. Anyway, I am sure you are finding this to be a very supportive, comforting place to be. I, too, am fortunate to have a supportive husband who sees what these diseases do to me on a daily basis. I am still working full-time (half-time during the summer), but know there may come a time when I can no longer do this. We have been doing a lot of reading and want to prepare as best we can for disability. My husband and I are attending the fibro, CFIDS and MPS seminar in Cincinnati, Ohio on March 22. We plan to take notes, especially when the legal experts talk about applying for disability. I can see that it's not an easy process and the chances for being rejected are high. Anyway, write and vent as often as you need to. For many of us, this board is the only place we can do that.

  8. phenom

    phenom New Member

    hi there, just wanted to say hi and that when i was younger, i named my favourite barbie doll kalina, i thought i made the name up! guess not! have a good day!

  9. mersey_ferryman51

    mersey_ferryman51 New Member

    Just wanted to welcome you!

    I'm 51, and my fibro started in 1989, and I wasn't properly diagnosed until 1994.

    I know your heartbreak in having to give up our career, as I too had to stop working....in 1992 when the symptoms became too severe.

    As for the friends you've lost......I'm hoping you'll count me in as one of the many friends here you've just FOUND!

    Take care for now, Kalina!!

    Larry G.

  10. Bambi

    Bambi New Member

    read awhile before I posted also. Now I'm afraid I post too much, but it's
    so great to find a place to share and
    support others with all the same feelings and problems you have. I've
    cried a lot of tears in the time I've
    been coming here, reading posts when
    people are having problems or health
    issues or flares of pain. But I've also found some humor in some of the
    posts and a community of people who
    truly do care about each other and
    seem to be bound by more than just these DD's. I'm going to be the big
    55 in March, have had FM for at least 25 years and severe asthma since a
    child, it was dormant through school
    and then came back during my first
    pregnancy and stayed. I have only been dx'd with FM for five years but
    we all know that's a long time when
    you're in pain and trying to live a
    life of any kind around it. I am just
    grateful though because I went so many years without proper care of pain management. I feel so sad for the ones who are still seeking a doctor to believe, care and treat their pain properly and with compassion! We all need help at some
    time and other times hopefully we can
    BE helpful. Sorry to be so long but
    I really hope you like it here and
    keep coming back! Hugs, Bambi

  11. kalina

    kalina New Member

    Thanks to ALL of you for the warm welcome! When I read your replies I was overwhelmed with so many emotions. What a wonderful thing it is to understand and to be understood. I can't tell you how much I appreciate hearing from each one of you, and I hope we meet again on the board.

    Phenom, what a funny coincidence about your Barbie doll. I too am only 12 inches tall and have enormous sideshow boobs! :p

  12. Revella

    Revella New Member

    I haven't been posting here very long either. Still learning alot. People on this board are so very friendly and encouraging. I'm very glad that I found out about this board and I know you will be too.