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

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  • runningshoe
    replied
    Everyone dealing with a chronic illness and lots of doctors should read
    HOW DOCTORS THINK by Jerome Groopman, m.d. It is a new book and he was on PR this week. I am finding it very interesting and helpful as I navigate my way through the medical system. It is in hardback but maybe your local library and get it for you. Hang in there all!!

    Leave a comment:


  • Moonheart
    replied
    Bravo and well said!!!!

    Yes, I can feel a cause starting......:woohoo: :woohoo: :woohoo:

    Leave a comment:


  • KathrynPInk
    replied
    I tell you girls; these Docs who treat with half knowlege of IC make me so angry!!!! IC has been updated from when these dudes went to school and they are falling down on their job not keeping up with the lastest literature. I am so sorry that Lori, and many others of you have had to deal with such terrible attitudes. It is hard enough having this illness, and then when one goes for help, they get emotionally beat up by the very people they hung their hope on....grrr..
    It kind of reminds me of the way Docs used to look at Depression after the birth of a baby. Postpartum depression was not taken seriously until the Nation got news of a lady or two who committed horrendous things, plus the publishing of Brooke Shield's book, that Dr.s FINALLYstarted saying "hey, there is a real illness called PPD or Post partum Depression....IC has not gotten the respect and serious attention it has needed! My Doc goes around and teaches others in Med school about this disease, so they will not have the opinion from the middle ages!
    I have a heart for all of you who are still being treated so badly emotionally. To me, Quality of life is a very important issue...and when we have IC, we need to know that whatever it takes to give us a good quality of life is what we deserve. Keep on fighting for yourself and things will change. I know it is very hard to fight when we are sick, but we must. I wish IC knowlege was changing TODAY for all Drs.
    You all are some brave ladies and I respect you for having to sometimes go it alone....that is a bad feeling, and one I do not ever want to have again.
    Please know there are Docs who keep up with the latest treatments and understand this disease is not in our heads....it can make our heads feel terrible, and very depressed, but that is NOT where it originated!!!!
    Time will bring about changes and good ones...do not give up. We will get better.

    Love to you all my dear friends~
    Katheryn

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  • jesamyn
    replied
    Lori,
    You deserve the care that you need if that includes painkillers of whatever kind you are comfortable with...people that don't live with chronic pain like we do have no right to dictate how to manage (or not manage) someone else's pain. I know you probably feel stuck but you absolutely need to find new doctors that actually have a clue about IC and whatever other health problems you are dealing with...and as far as feeling ashamed about being depressed, I would bet that 90% of the people in this forum are or have battled depression in some form or another...if your doctors were faced with all the horrible things that can go along with IC, they WOULD BE DEPRESSED TOO!!

    Hang in there!!

    Leave a comment:


  • sacausa
    replied
    Aaaawe that sucks!

    I think when I was at the worst with IC pain, ultram was like candy (meaning it didn't do ANYTHING)..... I mean it's not like you're even asking for drugs like vicodin (which also doesn't help my IC pain when it's at its worse)...... Aaaaaaaaaaaaaaaaaaaaaaaaaah, I want to scream on your behalf! I know you're not supposed to wish illness on anyone, but wouldn't it be great if these doctors could just experience ONE day with horrible IC pain, and then have YOU tell them it's all in their head?

    I mean seriously, if you wanted to make something up, you could be MUCH more creative than IC!!!!!!!!!!! ugh, this seriously makes me sick.

    Leave a comment:


  • sami4
    replied
    Challenge the medical record

    If that happened to me I would be so darn mad I would make such a big stink! First, I would gather all the medical literature on IC from a hospital library that I could find, in particular one that suggests treatments including pain medications. Then I would ask for a copy of the medical record from the psychologists office, threaten to get a lawyer or report him to the APA (Psychologists association) complain to the licensing board and ask for a review of his assesment.
    Dont be in awe of a PH.D or an MD. I have met plenty of idiots with both. In my PH.D program I couldnt believe how egoistic and narrow minded a lot them were, and they were my teachers!
    Dont be bamboozled! There are other codings he could have used, demand one of them.
    Sammi

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  • SandyRN
    replied
    Lori,

    I went through a similar ordeal the other day at the rheumatologist. I'd been looking forward to seeing him for quite a while now, things came up with my daughter and life just happened and I had to miss my appt...finally I got to go Friday. I went with the highest hopes that he would FINALLY be the ONE to help me. He told me that I have repressed stress from perhaps as early as a toddler, throughout my lifetime, and I'm not aware of it. This "repressed stress" causes a lack of oxygen in my muscles and joints thus causing the pain. He said that while it IS possible I have Lupus and maybe Sjornes, he actually DIAGNOSED me with TMS. TMS stands for Tension Myositis Syndrome....a form of fibro that is mental in origin.

    I was DEVASTATED. I've gone through so much in the years, and after his exam I REALLY expected him to tell me more about the Lupus, etc. He barely even touched on the Lupus. He wanted to sell me a book, yes, really, sell me a book on this TMS stuff.

    I turned the book down, barely got out of his office before I started crying. I came home and looked it up only to find out that it is not at all an accepted theory or diagnosis and that he's really just another one of THOSE doctors who label us as 'hysterical' women.

    I wrote him a letter, which you can find in my thread about that visit. I sat on it for a few hours before I emailed it, but even after I calmed down I decided to send it. He was not going to get away with treating me that way...not without my having my say back at him. I also took my lab sheet and am taking it today, in about an hour, to my primary care doctor and get him to run those labs for me. I know this man believes me and cares about me and will give me the best care he possibly can.

    I just wanted you to know you aren't alone. I know what it feels like to be humiliated by being labeled by a doctor. It's a terrible thing. It shouldn't have happened to you, and it shouldn't have happened to me.

    I wish I could help you more, but I wanted to share my story. I hope you get some help off base somehow and that you get things straightened out soon.

    Take care, Sandy

    Leave a comment:


  • Moonheart
    replied
    Lori, If you've been diagnosed officially with IC, how can they say it's all in your head? Or are they saying you are over-amplifying your pain, making more out of it than is warranted? I've been terrified that a doctor would think that of me, because I know how the pain is affecting me, but I never feel like anyone will believe that and think I'm overreacting.

    I'm so sorry you are going through this, but somehow you have to ignore this diagnosis because you know in your mind the truth. You do not have to be defined by a dianosis.

    HUGS,
    Moonheart

    Leave a comment:


  • ICLori
    replied
    LOL! That's a good one, I'm pretty sure there's a code for that in there somewhere!

    Blessings,
    Lori

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  • SharonA
    replied
    Cannibalism??????

    Leave a comment:


  • ICLori
    replied
    Well, okay guys, thank you thank you thank you all for the support and prayers. I don't understand really why I found this so humiliating, but I did. And it's still going to be kind of hard to go in to doctor's appointments, knowing they know, wondering what they think.

    But I think I'm through with the crying and stuff, at least for awhile.

    In fact I was thinking, do you guys remember the story about the rat, in Dr. Brookoff's lecture that is here on the ICN? It was the story of the rat given IC temporarily, the rat started writhing around in pain, then finally bit into it's own belly and tried to eat its bladder. Right on videotape!

    I was thinking what diagnostic codes the psychologists would give to the rat.

    Let's see - first they would give 307.89, for the general medical problem with psychological factors predominating....then there would be some code for attempted suicide, I am guessing. Hmmm...then there would be a code for self-mutilation (bladder eating...you 'spose they have a specific code for that? The book is some 900 pages long, maybe they have an exact code for that...) Oh, and of course they would have to throw in depression, naturally. And probably PTSD because they would feel the rat responded in too hysterical of a way to the make-believe pain.

    Can anybody else think of some more codes/diagnoses the psychologists would probably come up with for the rat? I'm feeling a bit wicked today, can you tell? Lori the smart-a##.

    Blessings,
    Lori

    Leave a comment:


  • ICLori
    replied
    You know, I did bring that book (and another one on pain and IC) in to him, left them there for a couple of weeks (he said he was interested in reading them) but the thing is, he's a new psychologist, still in rotation, and he's going to do everything "by the book." The DSM-IV says that the symptoms we have - the bladder symptoms, and also anyone who has endometrial symptoms, and anyone who has cramps with their period - are all hysterical in nature. Well, they don't use the word hysterical anymore, they use the word somatoform, but it's just a substitute for the old category of hysteria.
    So if you have those symptoms, it has to get coded under somatoform disorder, by the book.

    I think part of the problem is, the psychological books/coding manuals have not kept up with the new medical knowledge. We know that endometriosis is real, we know there is a physical reason for menstrual cramps, and we know IC is real, as is IBS - but all of those are still regarded in the diagnostic manual as psychological problems rather than physical illnesses.

    I wonder why they haven't changed their manual? The last manual came out I think in 2004, surely it was known by then these diseases are real...?

    I guess there just isn't any political pressure to change how the codes are.
    After all, we are only hysterical women, we don't matter.

    Blessings,
    Lori

    Leave a comment:


  • Rose Fish
    replied
    IC Pain

    Hi Lori - I love Donn'a suggestion about sending this doctor Dr. Moldwin's book or a copy of any of the lectures that have been given on the ICN such as Dr. Brookoff's lecture. I wish you the best of luck and your friends on this forum all understand the pain that is related to IC.

    Leave a comment:


  • ICLori
    replied
    Thank you so much, everyone. I think I'm going to stop volunteering at that hospital. I don't see why I should continue there - I'm not really appreciated, it's a long day (usually 12 hours) and now that hospital has really unpleasant associations for me. I don't want to go back, so I won't.

    Thank you so much for the advice and comfort, everyone. It's amazing the things that happen to women. It really is true that it's difficult for women to be treated well as far as medical or psychological treatment goes. I guess I shouldn't have expected good treatment.

    Blessings,
    Lori

    Leave a comment:


  • Zygala87
    replied
    Hi Lori. As I have said before, one can not expect much from military Doctors yet we have to be careful due to our mates careers. I do not know what 307.89 means??? I once went to the hospital when our Son received a dog bite on his face. When asked about the dog and who owned it I told them the truth, strange dog and I have no idea who owns it as it ran off. Later I had a chance to peek at my Son's record. The jerk who took my information wrote down that I was very uncooperative about supplying information pertaining to the dog. When I next took our Son to a Doctor I told him how awful I felt about what was in the record and explained what really happened. The Doctor took his pen and crossed it out in full. This was back in the 70's so I guess everything is on computer now. I know it is difficult but try to look upon these Doctors as a necessary aggravation. Some (rare) are OK. Someday you will be out and away from the service then you will call the shots. I look back now and think how foolish of me to let them upset me so much as I was right and they were wrong. They should be ashamed not you! Hugs, Ziggy

    Leave a comment:

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