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I don't know how to live with the 307.89 diagnosis

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  • gypsyjoy
    replied
    The Feds and medical

    Lori, Please PM Barb she has experiance with the Feds. And I am sure she should be of help.If not e- mail me and I might get you some help. [email protected]

    JOY

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  • ihurttoo
    replied
    Dear Lori,

    I am so sorry to hear about what these ignorant jerks have done to you! But, yes, I have had the unfortunate experinace of having this happen. With me, it was a d/x of Undifferentiated Somatoform disorder. Only mine was by a Psychiatrist for SSD and the Disability judge agreed with him, even though I had letters written from my IC Dr. (who had seen me 3 x a week for 4years for instills and other things), and also my Rhematologist. Both wrote me letters that said I was completely (physically disabled from IC, Lupus and Fibro. (At that time I also had vulvar vestibulitis, since this was before the vestibulectomy. Plus I also have Endometriois and adhesions that were so severe they had grown thru my bladder and bowels, causing my IC!)

    They thought b/c the endo was removed from my bladder, that I should no longer have IC. They forgot that 1)Endo comes back. 2) Surgery creates new adhesions. 3) I still had Lupus (but it was just showing up as positive nuclear antibodies in the labs then...not on the LE Prep Test yet, since I hadnt had the LE Prep when I was flaring until after I got disability). 4) I also still had everything else, including daily, unremitting pain.

    It seems the cards were stacked against me b/c many of the symptoms of Somataform Disorder are symptoms of IC or one of the coexisting conditions such as VV, (Such as painful sex, bladder problems, fibro, multiple Drs. visits, etc.) (I named all the symptoms on the thread I wrote at the time this happened.)

    The judge granted me Disability alright, but NOT for any of the conditions I applied for or for which my Drs had written letters! Instead, (unbeknowanst to me), the SSD apptointed Psychiatrist thought it was all Psychosomatic and the judge agreed, awarding me SSD based upon "Undifferentiated Somataform Disorder."

    I wrote two or three posts about it here, but I cant find a pen to write down the links, but if you do a search here on Somatoform Disorder, you will see my posts. (Sorry I cant link them here!)

    Obviously, I understand every feeling you are experiancing, including the shame, embarrassment, anger, blind-white rage, helplessness, and everything else. I have also had a few other experiances in common with you. I just want you to know that if you want to talk someone who has experinaced the same things, (a pretty unique combo!) then, feel free to call me. I will send you my number again in a Pm, in case you cant find it.

    I wish you were here now so I could hug you. I am so outraged that they have done this to you. You have every right to feel everything you feel!

    But, the good news is that even with all that happened to me, I still found a pain clinic after that, and finally got on daily Morphine w/ Lortab for breakthru pain. My own 2 Drs (the ones who wrote the letters), still believe me too and know I am not some malingering nut. After all that happened, I thought no Dr. would ever want me again and the ones I had would turn on me. But, as we know, Drs dont always agree and it only takes ONE!

    As for your therapist, just keep this in mind, "If your only tool is a hammer, everything looks like a nail." (I dont know the author of that quote, but I have read it on this site and it rings very true!)

    Sending big hugs your way,
    Amy
    Last edited by ihurttoo; 03-20-2007, 06:01 PM. Reason: spelling

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  • ICNDonna
    replied
    One thing you might do is to take them a copy of Dr. Moldwin's book --- they may see it as more accurate since it's written by a physician and is actually in published book form, rather than print-outs from the internet. Some docs really don't even want to look at internet information --- just because there's some crap on the net, some think it's all crap!

    It does sound like your uro does understand that you are in pain.

    Hang in there!

    Warm hugs,
    Donna

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  • curlycue
    replied
    Prayers


    I will keep you in my thoughts and prayers. Please dont give up.Keep fighting.

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  • Annie2
    replied
    Lori,

    I have been out of town for a couple of weeks and have not had much Internet access. I have not been able to respond through a PM. I'm in a hotel with limited access tonight, but should be home tomorrow evening. Please give me a call at home or on my cell and I'll help in whatever way I can. Are you going to the PM on Yankee? I'm not far from there and would be glad to accompany you ....or do whatever else I can to give you support. If you do decide to go for civilian medical care, I have a little info on docs in the area. Just want you to know I am here for you and will do anything I can to help you find the quality care you DESERVE and the support you need.

    I want you to know I agree with what others have said so well. Like so many here, I truly value you, your spirit, your compassion, your intelligence, your perseverance,....and SO MUCH MORE!!!

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  • Guest's Avatar
    Guest replied
    Dear Lori,

    There's a Swedish saying that goes: "Alla dagars afton är inte kommen." It means that while we don't know what is in store for us before life is over, there is still hope. I think it's okay and even healthy to feel angry and humiliated with what you're going through. I won't get into how I feel about the way our military (or country for that matter) is being run, but it certainly sounds like you aren't getting adequate care and compassion. Sometimes I think it would be easier to have cancer or something that EVERYBODY knows, and everybody wants to find a cure, and everybody feels compassion for the courageous people who fight it. But fighting something as painful/disabling/humiliating/awful as IC deserves more compassion and attention than most of us currently get. It totally freaking sucks. I know how hard it is to feel as low as you do now, and what keeps me going in darker times is the memory of good times in the past. I learned in one of my psychology classes that when we become depressed or are going through hard times, our minds are primed to recall all the other crappy experiences we've had, and a vicious cycle starts. What helps me is writing down, in a sort of novel-like way, some of my happiest memories. Every day I write down one memory, until I have a notebook-full that I can go back to and read over if I need to. When I'm REALLY depressed, I almost have to force myself to write something down, but it's a simple mind exercise that could potentially help.

    I'm thinking about you and hoping you'll feel better soon. Try to have some sweet dreams tonight

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  • Trishann
    replied
    I amen to that.

    Hugs, Trishann

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  • vm
    replied
    I'm glad your "award thread" was so timely. You are most certainly not worthless and no stupid diagnosis on a piece of paper or in a file could ever mean that. It may affect how you are treated, and I know that is what you are most upset about, but it absolutely does not mean you are a different person than you were a year ago or a month ago. Words on paper. You, my friend, ROCK - don't ever, EVER forget that ---- no matter what some doctor says.

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  • ICLori
    replied
    Thank you so much, Kim! BTW, your kind words to me on the award have kept me going. I printed them out and I look at them several times a day, trying to tell myself I'm not worthless. Thank you. You will never know how much those words mean to me, I can never express it well enough.

    I was told by Dr. B. that everyone who walks in the clinic with chronic pain (even from cancer) gets diagnosed with 307.89. It's an automatic. Not sure why - maybe insurance? It's all a military treatment facility.

    What is kind of interesting is that women are diagnosed with 307.89 something like 20 times more often than men. Psychologists are basically saying it's because women are allowed to be weakly and sick in our society and are coddled, while men have real duties and responsibilities, and that's why so many women are imagining that they have pain when really they don't. To me, that smacks of gender bias.

    Shrug. I can't change the world. I don't think I'll bother Jill with this - if she's interested, she will read the thread.

    Blessings,
    Lori

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  • vm
    replied
    Another thought: are they pigeonholing you into this diagnosis in order for their treatment to be billable/reimbursable? That does happen..... Meaning, does the diagnosis on the forms to be sent in to your insurance HAVE to say something about a psychological "issue" in order for them to be reimbursed for mental health related treatment? Could they not just code it as depression if that was the case? Just a thought - it may not be what they are doing, but it crossed my mind.

    Leave a comment:


  • vm
    replied
    Lori, you may have already found this in your research, but I thought I'd post it in case you hadn't:

    http://books.google.com/books?id=znu...ij1I#PPA308,M1

    Click it and then read pg 295 and on - it talks about patients with endo being diagnosed under that code. I don't know that it will be helpful at all - may just be commiseration.

    Honestly, if I were you I would talk to Jill about this. I know this is the sort of thing she's been interested in hearing about before. I wish I had something really helpful to say, but I don't. Just wanted to offer some sort of support and some big smoochies.
    Last edited by vm; 03-20-2007, 02:23 PM.

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  • ICLori
    replied
    Thank you so much, everyone! I'm so sorry for the bad experiences so many of you have had with doctors. It's just not fair!

    My husband and I considered paying out of pocket for my care, but given that I have these chronic conditions (like IC) it would just be prohibitively expensive.

    Barb, thank you so much, I will PM you now!

    Blessings,
    Lori
    P.S. I talked with my husband about this, and he said, "they are idiots - just because they have a PhD doesn't mean they know anything about your disease - when you go to the doctor and if he puts you down, just think to yourself, 'he's an idiot, he's an idiot' and the idea of that kind of made me laugh, so I feel better now."

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  • Babs RN
    replied
    Lori,
    PM me, I think I might be able to give you some suggestions.

    Hugs,
    Barb

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  • SharonA
    replied
    Lori...You wrote: P.S. Thank you so much, Sharon, for your kind and soothing words, and for the prayers! They really help me. Unfortunately, I don't seem able to get my care off-base.

    I am sorry that I did not do a better job of explaining what I was trying to say. Granted that it has been a vey long time since I was connected with the military (former Air Force Brat and Air Force Wife), but somewhere in the back of my brain I seem to remember that you can take your care off-base if you are willing to pay for it yourself. You bet that would be expensive and I do not know if you are in a financial position to do so, (please do not respond about this since it really is none of my business) but it might be worth discussing with your husband.

    Leave a comment:


  • Want2BPainFree
    replied
    Hi, there. I don't know you yet b/c I'm new here, but a couple of things I want to say to you I can type really quickly here.

    There is nothing to be ashamed of. I don't know what happened to you as a child, but that is nothing to be ashamed of either. Please do not allow other people's ignorance of your pain (physical AND emotional...in that order) make you feel shame.

    Also, I actually feel from reading your post that getting away from that whole environment of "medical care"....using that term loosely might be the best thing for your IC pain.

    The thing is: this isn't the chicken or the egg question. We all know as IC sufferers that your angst and your depression and your hurts intensified after IC came along for you. We all understand that b/c we suffer as well. They won't understand until something causes them relentless pain and changes their whole outlook on life.

    I have NEVER known one person with chronic disease and/or pain that didn't go through some sort of grief process of denial, anger, acceptance, etc. If these doctors cannot help you achieve the end goal of that process for all of your entire being, move on from them, they are no use to you.

    At this point, a solitary spa retreat might be exactly what you could use. I wish the military would pay for that for you, but I know they won't.

    Leave a comment:

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