Yet another new one here

Discussion in 'Fibromyalgia Main Forum' started by ForeverFlaring, Mar 25, 2003.

  1. ForeverFlaring

    ForeverFlaring New Member

    Hi all.

    I thought I would introduce myself to you. I found this board a few days ago and love it. There is such a wealth of knowledge and experience here I could sit here for hours on end if it didnt hurt to do so. :)

    So anyhow, my name is Sandy. I have had all the symptoms of fibro for the past 5 years. I was a hard working mother in retail management making really good money and on the rise career wise when I got chickenpox from my kids. Things have never been the same since. I lost that job and 4 others after it because I have frequent absenteeism and tardiness. I have seen many docs; official diagnosis is Fibro, CFS, Epstein Barr virus, and RSD. Possible future diagnosis is unknown. I have a positive ANA but Rheumy says I don't have lupus. I am sure you can all relate to the myriad of symptoms we all experience for which there are a thousand possible diseases. I feel like a hypochondriac sometimes even though I am not.

    I think the hardest things about Fibro are how you are perceived by others. When I make new friends it is usually when I am only in moderate pain. They never see me at my worst as I am shut in the house for days/weeks on end. They only see me as the happy go lucky woman with a slight weight problem (Thanks Elavil) They don't understand that some days it hurts to not only get up to answer the phone, but it hurts to hold it to my ear and try to maintain a conversation. I go for days on end without answering the phone or I have hubby make excuses for me like I am at the store, in the shower, laying down etc. They invite me to go shopping, or bingo or out to dinner and don't realize I am not unsociable by choice. It's hard to keep new friends this way. The old ones are the best ones they understand.

    I have recently moved to PA from Virginia. I had a wonderful doc there who would spend an hour with me every visit. I havent found one I like here yet. The last one I went to was a woman and she was very sweet until I told her I had filed for SSDI. You could literally see the mask of ridicule and disbelief as she heard my story. She became very blunt and abrupt and in the middle of conversation she simply got up and told me she would have the nurse bring my prescriptions in. It is extremely frustrating to try to find a doc as you all well know. Sometimes I wish I had a visible physical ailment so my inner voice would not be screaming at me thats its all in my head.

    I filed for SSDI back in April 2002. After I moved I gave them my new address via phone. In October I still had not heard anything so I called back to see why not. They told me my case would be expedited. I was then evicted from my home because I couldn't pay the bills. After 3 weeks of being homeless we finally found a new place to live which happens to be 3 blocks from the local social security office. I went in and gave them my new address, and inquired regarding my application. I was told it was denied and they would send me a denial letter to my new address so I could begin the appeal. To make a long sotry short, they did not have my current address in the system after 4 times of me notifying them. Grrrr. Anyhow I fought with them and won one battle. They said it was too late to appeal. I showed them all documentation of all the times I called and finally they let it go through. The funny thing about all this (not really funny but ironic) is that in my denial letter the last line reads: "We have been unable to reach you by phone or by letter. Therefore disability benefits must be denied."

    I finally decided to contact an attorney. With all of the mistakes they have made in my claim thus far I feel it is the best thing.

    I have rambled endlessly here but my intent was just to say hello. Please pray for a good outcome on this SSDI appeal. I am so upset over the whole thing. I actually thought about suicide for entire month of February until about a week ago. I could never do it because I love my children too much but they have really put me over the edge here.

    Thanks for letting me vent. I promise future posts will be much more positive.

    God Bless us All,
    Sandy
  2. pam_d

    pam_d New Member

    So glad you found us here! I have not gone through the SSDI or appeals process myself, but many here have, you will get lots of support & encouragement here, and hopefully some good information. It seems that most here eventually prevail, it's important to keep that fighting spirit, don't give up! We will all give you support here ALWAYS with coping through the dark days FM/CFS gives you, here you will truly find friends who understand what you are feeling & going through. I've had FM, sjogren's for 4 years, and I have learned so much here from everyone's collective experiences & wisdom. Glad you found this site & hope you have better days ahead----and vent any time, that's part of the process & that's what we're here for!

    Hugs,
    Pam
  3. teawah

    teawah New Member

    I am SO glad you are here to share your story with us. I am having a miserable time and it is good to know that another whom is also having a hard time is not giving up either. I appreciate what you are going through and will keep you in my prayers.

    I also have not been able to find a good doc. I have been here in Idaho for over 3 years now and still no luck. I am trying to get my pcp to give me a referral to go to a pain clinic that someone on this board told me about. My ins. won't pay unless I get the referral so I hope she (doc) gives it to me. Otherwise I may have to blow her up. JUST KIDDING!!!! I am not a violent person although I dream of being now and then. It helps me to get out the anger by imagining being that tuff to blow up their offices, you know?

    Anyway, welcome and I hope you find all the support that I have found from the beautiful people here.

    Love, teawah
  4. Shirl

    Shirl New Member

    Hi Sandy, welcome to our world! We have awhole lot of others that can relate to your problems with SSD, doctors, and a lot of the rest of what you are going through.

    Glad you found our little world here, lots of wonderful, helpful, well informed people on these boards.

    Again, welcome................

    Shalom, Shirl
  5. Bambi

    Bambi New Member

    I love this board even though I'm probably a pain in the posterior to
    some. I haven't tried to get the SSDI since I never worked and hubby has a
    decent job, but hope it comes through
    for you soon! Don't ever give in or
    up--you are right, your kids need you
    and we all need to see each other hanging on. I know what you mean though, I am homebound and see noone
    but my husband and sometimes our daughter who also has FM. I get sooo
    lonely and then depressed. This board
    gives me the chance to see I am not alone in these feelings and it really
    does help at the worst times. Welcome
    and keep coming back! Hugs, Bambi
    [This Message was Edited on 03/25/2003]
  6. ForeverFlaring

    ForeverFlaring New Member

    WOW! Thanks for the warm welcome! I already feel at home here! Angel I live in SW PA near Pittsburgh. I have a friend about 30 minutes from me who suggested I go see her doc. This friend raved about her the day she came home from her first visit. She is a Family Practioner, and although my friend did not see her for fibro she was very sympathetic, sweet, and reassuring. She even hugged her before my friend walked out the door. I think I might go see her. I just hope she is as understanding about fibro as she was for obesity and diabetes with my friend. I absolutely dread seeing any doctor at this point but if I want to win my case, that is what I have to do.

    You all were very sweet to welcome me here, I look forward to laughing and learning from you all.

    Sandy
  7. tandy

    tandy New Member

    Welcome to our endless pain board!! Sorry you have the many illnesses that hardly nobody recognizes!!We sure do here! Glad your here and hope to hear more from you!!
    Good luck on your SSI appeal!! you'll get it!!persistance is the key~
    Warm ((Hugs)),
    Tracey
  8. bejo

    bejo New Member

    Welcome Sandy.I've never filed for SSDI so I can't be of much help to you.But I do want to add my welcome to everyone elses.We always have room for more in our family.How old are your children ? Mine are grown and I have grandchildren.((((((((hugs))))))))) bejo