Just needing to belong...

Discussion in 'Fibromyalgia Main Forum' started by mamusia, Nov 21, 2002.

  1. mamusia

    mamusia New Member

    Hi, I am new to the message board and this is my first posting. I have been reading messages for several weeks now and I have been impressed with the amount of sharing and support that everyone gives to each other.

    I guess I just needed to belong to this because I have been feeling very overwhelmed and isolated because of what has happened in such a short time since my diagnosis of FMS/CMP Complex.

    For years just like all of you so many things were happening to me and I would be mistreated or brushed off by medical persons. Finally in July of this year the pain became so severe that I have not been able to stand completely upright from my lowerback area. In August my Rheumatologist made the diagnosis, and as of the end of this month I will have a new Primary Care Physician that will help coordinate my care with my Rheumy.

    I had not realized how much stress plays a roll in this illness and I am no stranger to stress. My job was very stressful for 20 years in the financial industry and operations divisions (with overbearing bosses), my mother and two brothers passed away from cancer, found out I had fourth level endometriosis that was pre-cancerous and had to have a hysterectomy, and then when all was seemingly lost met my husband (he's a pretty special guy).

    We moved to Florida (little bit of stress there leaving family and friends, but we thought the weather would help my "made up aches and pains" and "have an overeating problem and anxiety syndrome" as the doctors called it - keep in mind that at the time the doctors said this I was about 155 pounds and am 6 foot 2 inches tall). We had always wanted to have a family of our own so after years of domestic adoption disappointment we went through a lengthy and stressful international adoption process and brought home our 3 beautiful children last year.

    I have always been a dilligent employee and paid into STD and LTD. My parent company has been holding my salary for 3 months because they received my doctor's diagnosis in August and stopped paying me. They then required that I go for a Functional Capacity Evaluation at a facility of their choosing and I did. That was 15 business days ago and I am still awaiting their decision on my appeal. They are really making it difficult for us because my income was half our family income and now we have exhausted our resources. The sad thing is, as is the case for many of you, the financial stress adds to the illness. We continue to pray that my company will find in my favor on this appeal, and quickly because we were already financially stressed from the cost of the adoption.

    Well, I know this is getting long but I just felt so good being able to have people who truly understand hear my story and not feel bad for sharing it. I have needed to speak out for so long and it really has helped.

    I am lucky to have 3 beautiful children and a very supportive husband, family and friends. But, it is so overwhelming how much life changes and not in the direction you thought, plus you get your diagnosis and you want to shout to the world "see, I am vindicated, this is not in my head" but the people that control the purse strings want to make it just the opposite, and the medical profession that is not on board continues to make life a living nightmare.

    Whew, felt so good.....thank you for letting me go on and on, have to go rest now, have not been able to sit upright for very long and typing makes the hands go numb.

    Mamusia (Polish for Momma - and I am a very happy new Momma!)
    [This Message was Edited on 11/21/2002]
  2. mamusia

    mamusia New Member

    Hi, I am new to the message board and this is my first posting. I have been reading messages for several weeks now and I have been impressed with the amount of sharing and support that everyone gives to each other.

    I guess I just needed to belong to this because I have been feeling very overwhelmed and isolated because of what has happened in such a short time since my diagnosis of FMS/CMP Complex.

    For years just like all of you so many things were happening to me and I would be mistreated or brushed off by medical persons. Finally in July of this year the pain became so severe that I have not been able to stand completely upright from my lowerback area. In August my Rheumatologist made the diagnosis, and as of the end of this month I will have a new Primary Care Physician that will help coordinate my care with my Rheumy.

    I had not realized how much stress plays a roll in this illness and I am no stranger to stress. My job was very stressful for 20 years in the financial industry and operations divisions (with overbearing bosses), my mother and two brothers passed away from cancer, found out I had fourth level endometriosis that was pre-cancerous and had to have a hysterectomy, and then when all was seemingly lost met my husband (he's a pretty special guy).

    We moved to Florida (little bit of stress there leaving family and friends, but we thought the weather would help my "made up aches and pains" and "have an overeating problem and anxiety syndrome" as the doctors called it - keep in mind that at the time the doctors said this I was about 155 pounds and am 6 foot 2 inches tall). We had always wanted to have a family of our own so after years of domestic adoption disappointment we went through a lengthy and stressful international adoption process and brought home our 3 beautiful children last year.

    I have always been a dilligent employee and paid into STD and LTD. My parent company has been holding my salary for 3 months because they received my doctor's diagnosis in August and stopped paying me. They then required that I go for a Functional Capacity Evaluation at a facility of their choosing and I did. That was 15 business days ago and I am still awaiting their decision on my appeal. They are really making it difficult for us because my income was half our family income and now we have exhausted our resources. The sad thing is, as is the case for many of you, the financial stress adds to the illness. We continue to pray that my company will find in my favor on this appeal, and quickly because we were already financially stressed from the cost of the adoption.

    Well, I know this is getting long but I just felt so good being able to have people who truly understand hear my story and not feel bad for sharing it. I have needed to speak out for so long and it really has helped.

    I am lucky to have 3 beautiful children and a very supportive husband, family and friends. But, it is so overwhelming how much life changes and not in the direction you thought, plus you get your diagnosis and you want to shout to the world "see, I am vindicated, this is not in my head" but the people that control the purse strings want to make it just the opposite, and the medical profession that is not on board continues to make life a living nightmare.

    Whew, felt so good.....thank you for letting me go on and on, have to go rest now, have not been able to sit upright for very long and typing makes the hands go numb.

    Mamusia (Polish for Momma - and I am a very happy new Momma!)
    [This Message was Edited on 11/21/2002]
  3. Shirl

    Shirl New Member

    Hi, glad you found our world here. You really had a story to tell!

    Glad you have your children, and such a great husband. We do need support at all times.

    Florida is the favorite spot for these illnesses, many of our members have moved there. It must be better than the cold areas. Plus it is so beautiful a state.

    Do hope you get your finances straightened out, as stress is one of our worst enemies.

    I am originally from New Oreans, and have moved to a quiet country area of Louisiana for the peace and quiet, instead of the hassle of the City. It has made a big difference for me, plus a big change in lifestyle.

    We have some wonderful members here, very friendly and well informed in these illnesses too. Also be sure to use our Library, as it is indispensable to FM/CFS.

    Again, welcome and hope we hear from you often.

    Shalom, Shirl


    [This Message was Edited on 11/21/2002]
  4. mamusia

    mamusia New Member

    I appreciate your kind words. I have been trying to read as much on this site as I can because it is a wealth of knowledge but I do tire so easily that I sometimes print it to read in spurts.

    I'm just glad to have found a place where someone understands, truly inside, what the pain and exhaustion and neverending battle is really like.

    Thanks again!
  5. mariac2000

    mariac2000 New Member

    I've been on this board for while' but have just recently actually got a diagnosis of FM. I too am having trouble dealing with the diagnosis. This board has been a life saver for me. If you have any questions someone here can answer it or point you in the right direction. Plus it is a great place to "sound off" if you are going through a rough time. It's like a family here, and everybody understand what you are going through.

    Wishing you well

    Maria
  6. karen55

    karen55 New Member

    Like Mariac2000, I've only been a member of this board a few weeks, but I've found it to be most helpful and supportive. I spend much more time reading the posts than responding to them, but I feel like I'm learning a lot here, and I feel validated since many of the things recommended here are things I was already trying on my own. Sorry you are feeling so badly, but hopefully there will be something posted here that will help you too. And if not, at least you know you can come here for support.

    Karen
  7. BonBons

    BonBons New Member

    Yes, the stress levels contributed to my problems. We also moved to Florida for health reasons (mine). I am always sad when I read about another person the docs can't figure out and I know how scary and angry that made me (and still does, at times). This is a good board, I've read so many informative things and most of all, realize I am not alone. Also, when I had endo (one total hysterectomy, then 5 years later more popped up) the doctors didn't understand it either and since 1984, they are light-years ahead. So now you have good medical support and hope for the future. Take care of yourself, there's no-one like you!
    BonBons
    [This Message was Edited on 11/21/2002]
  8. twjen

    twjen New Member

    I know just what you mean about so many things. I even tried to convince myself it was all in my head, and waited, it never went away. Even if it was all in my head than Id still be sick right LOL, I know its not, Im pretty darn sensible and SANE. Work is giving me sh.. also. Have a great weekend!
  9. tandy

    tandy New Member

    Todays one of my worse days....so darn worn out&tired-I'm watching the clock for bedtime!!Its never to soon for me,but for my kids it is.(gee-maybe I could set the clocks ahead!!Tee hee! Anyway,I wanted to say HI and welcome you here to the board!I'm sure you'll find it helpful and just nice to see others with the same symptoms that make us wonder if its part of these diseases.I hope to get to know you better.And a big congradulations on your children!!!they are fun!!Sorry about the endometriosis~I have that also.(lots of pelvic pain!!)I'll be getting a hysterectomy in the near future too~
    best regards,
    Tracey
  10. kadywill

    kadywill New Member

    Bless your Heart!!!! I understand and empathize and I am so glad you found us. On this board you can get info, comfort, support and warm fuzzies!!! Please post a lot and let us talk about all of this~~it DOES help to have friends who know what you're going through.
    Happy to meet you! I'm in NC......
    Love,
    Kady
  11. LindaGa

    LindaGa New Member

    I hope you enjoy the board,I'm perrty new here and the people are great,if you have a good or bad day its good to come here.I use to live in Fla,Ft Lauderdale.I now live in Georgia moved here 4 years ago I just got dianosied 6 weeks ago,and with winter coming wish I was back in Fla,LOL. Take care,God Bless.LindaGa
  12. karen2002

    karen2002 New Member

    My Grandmother was Polish---ohhh did I love her cooking, as a child!
    So nice to meet you. It sounds as if you have a wonderful family--
    Try not to let the stresses brought on by finances, affect you--but you already knew that.
    I am looking forward to hearing more from you, and getting to know you. This is a wonderful site--comprised of great folks.
    Best Wishes,
    Karen
  13. tamara!

    tamara! New Member

    I know how you felt not having people to talk to who understood.
    I read the messages a long time before I posted. Guess I was chicken, and not use to computers or the lingo.
    It has help me so much just to know there are others going through this and I'm REALLY NOT crazy like everyone thought.
    My husband is great too. That helps a lot. My mom has always understood (of corse),but it's great to have people who are right there with you.
    Welcome to the board.
    For the fight,
    TAMARA!
  14. pam_d

    pam_d New Member

    So glad you found this site, I know exactly what you mean about needing to belong; even with many friends & family members to support us, there's nothing like having people who are in the same situation as we are to really feel that sense of "belonging"...you will get that here, plus a whole lot of great information.

    I also joined a local support group, which I have enjoyed, too---it's been great as far as finding out which are the best doctors, chiros, therapists, dentists even, in my area for treating FM, in addition to providing support & friendship. So you might consider checking that out---not everyone's a "joiner" but it's great for some.

    I'll be keeping my fingers crossed for you regarding your job situation. Hopefully it will be successfully resolved soon so that the financial concerns won't continue to add additional stresses.

    Sounds like you have a loving husband & children, you are blessed with those riches!!!

    Hope we hear from you often!

    Hugs & welcome!
    Pam
  15. mamusia

    mamusia New Member

    Thank you so much for all of your words of encouragement. I am still learning how all of this works with replying to each of you. I want so much to be able to share with you the same kindness.

    I'm glad I didn't prevent myself from signing on and sending my first message. This has been such a warm experience and I feel like I have a place to call my own, where people truly do understand.

    I went to a support group too, and I am going to go to the next meeting too. I just want to make sure that it is an uplifting and educating group because I just don't want to get down again. I can't afford the shrink anymore...LOL