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Thread: I hate LIMBO land!

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    Default I hate LIMBO land!

    Seriously, it's fine being in Limbo Land when I feel "fine". My fine used to be great, but now my "fine" is defined by whole new set of set of rules. If I am not too tired to get out of bed, if my head isnt aching, if my hips arnt hurting, if I am not nauseated, bla, bla, bla, I must be doing fine. But I am the woman I used to be!

    But when I feel like complete crap, I wish that someone in my life (list of doctors) would take some time to look at my big picture and say yes, you have Lupus or some other defined autoimmune disease, and treat it with kindness and respect. As it is, I feel like a ball in one of Venus William's game of tennis, going back and forth, never getting enough time to explaine myself. Obviously I dont WANT an illness, but my labs are crystal clear and my body is clearly in sync with some type of autoimmune thing...my guess is Lupus...or Scleroderma...or both. With no diagnosis at the moment, my treatment is yoga and tylenol....NOT working.

    Today is one of those days. Truthfully this week has been one of those weeks. I do have a pending doctors apointment, but my hope for any real help is nill. I have been playing autoimmune "ring-around-the-rosy" since 2005. I'm so sick of it, yet doctors continue to insist that I follow up with the rheumatologist. So off to a new one I go...next month. It almost hurts to have hope for a caring doctor.

    I have been diagnosed with three different but simalar autoimmune diseases and treated with medications twice since 2005 and twice that diagnosis was retracted by another doctor who didnt agree. The first time it was Lupus. He laughed after looking at me and reading my sad stack of a chart and said you clearly have Lupus. I was given Plaquanil and steroids. The next said that Lupus was a diagnosis that any dumb doctor would give me, but thats not what I have, this doctor said I had Scleroderma. I was given Methotrexate. Nope said the next doctor, you look fine now and I think you have some sort of mixed connective dissorder and fibromyalgia.

    Well thanks! So today I feel like crap, and thats my story. Am I the only one???

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Mynest,


    I was diagnosed with SLE in 2004. It was confirmed by more than one rheumo, including the one I had to see in order to qualify for disability.

    I have SLE.

    Since then, I've moved cross country, and have been through quite a few rheumo's. I learned that I have to TELL these people why I am seeing them, and not let their sometimes less than analytical minds wander too far from that. I don't ask for rheumo's opinions anymore until we establish some ground rules, and they show me that they are willing to stick to those rules. I am not there for an opinion on whether I have Lupus or not. I am also not seeing them just so they can second guess a proper diagnosis made by a competent group of fellow rheumo's. Just because they don't know jack about autoimmune disorders, does not make it OK to "un-diagnose" me because they are ignorant about a subject that they are supposed to be an expert on.

    I tell them I am seeing them so they can monitor my Lupus and keep me going on my already effective treatment plan/meds. If they cannot grasp that I am there to have an existing autoimmune disorder monitored and treated, I turn around and leave. I had one rheumo start his first conversation with me by asking me "what makes you think you have Lupus?". UH, because I do? Because I was diagnosed with it in 2004. Because I was approved for full disability because of it. Because my mother also has Lupus. Because I met and exceeded the diagnostic criteria...

    That appointment did not go well for that rheumo. If I sound angry, and sound like I have very little good to say about most rheumo's, then so be it. There comes a point where we have to walk into that Dr.'s office with a clear cut goal-treating our autoimmune disorders. I refuse to allow any Dr. to throw my life into a confused shambles of second guesses as to what is wrong with me. I will not allow any Dr. to endanger my health by taking me off the meds that have worked so well for me in my seven years of living with Lupus. If I have to be an a-hole to achieve this, then once again, so be it.

    They work for me. I walk into the office with the attitude that I'm running the show, and that they are there to do a job. This is what works for me.

    Rob
    Last edited by rob; 09-01-2011 at 06:09 AM.

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    I remember, being in limbo, was worse that the final diagnoses.
    Don't give up, there is a few good rheumy's out there. Alot of times, the dx takes a long time.
    Good luck with your new rheumy.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Quote Originally Posted by rob View Post
    Hi Mynest,


    I was diagnosed with SLE in 2004. It was confirmed by more than one rheumo, including the one I had to see in order to qualify for disability.

    I have SLE.

    Since then, I've moved cross country, and have been through quite a few rheumo's. I learned that I have to TELL these people why I am seeing them, and not let their sometimes less than analytical minds wander too far from that. I don't ask for rheumo's opinions anymore until we establish some ground rules, and they show me that they are willing to stick to those rules. I am not there for an opinion on whether I have Lupus or not. I am also not seeing them just so they can second guess a proper diagnosis made by a competent group of fellow rheumo's. Just because they don't know jack about autoimmune disorders, does not make it OK to "un-diagnose" me because they are ignorant about a subject that they are supposed to be an expert on.

    I tell them I am seeing them so they can monitor my Lupus and keep me going on my already effective treatment plan/meds. If they cannot grasp that I am there to have an existing autoimmune disorder monitored and treated, I turn around and leave. I had one rheumo start his first conversation with me by asking me "what makes you think you have Lupus?". UH, because I do? Because I was diagnosed with it in 2004. Because I was approved for full disability because of it. Because my mother also has Lupus. Because I met and exceeded the diagnostic criteria...

    That appointment did not go well for that rheumo. If I sound angry, and sound like I have very little good to say about most rheumo's, then so be it. There comes a point where we have to walk into that Dr.'s office with a clear cut goal-treating our autoimmune disorders. I refuse to allow any Dr. to throw my life into a confused shambles of second guesses as to what is wrong with me. I will not allow any Dr. to endanger my health by taking me off the meds that have worked so well for me in my seven years of living with Lupus. If I have to be an a-hole to achieve this, then once again, so be it.

    They work for me. I walk into the office with the attitude that I'm running the show, and that they are there to do a job. This is what works for me.

    Rob
    .

    Dannnnnnnggggggggggggg! You go Rob! (Can hear a crowd going "whoop whoop" LOL (now back to your regularly scheduled thread0
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    I am so sorry that you are going through this! Way too many of us run on this merry go round for years. You are*
    I wasn't clear about your current meds. Are you still taking plaquenil and steroids? If not did they help when you were on them?

    ( For me FINE is when things suck! At one point in my life I worked in a drug treatment center and fine was the word people used when they didn't want to discuss their feelings so FINE is "F****D Up, Insecure, Neurotic and Emotional. Aerosmith actually wrote a song about it. LOL I am fine way too often!)
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Move over and make room for me in Limbo Land. For two years now I have had symptoms of something AI. Last summer's bloods showed a positive ANA but nothing else. This summer the symptoms got much worse with the burning and aching joints. PCP sent me to Rheum. Went earlier in the month - nothing, zip, zero, nada. Bloods are fine with the exception of an elevated RPN and xrays show nothing other than what one might expect from aging.

    Odd thing was that within one day of rheum appt. all symptoms disappeared. And they stayed gone until a few days ago. The burning and aching in all joints is gradually creeping back in. My energy level is still good tho.

    So I don't know - - do I leave this alone or continue to look for answers? Are my bloods always going to be normal? Right now, the doc I work for is looking at my results and he might refer me to a chiropractor who is also an internist and rheumatologist. My ins will not pay for this since I am in HMO.

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    Rob, so many truths to what you said! I need to adopt your attitude and not let docs play the guessing game with my health after 10 min. of meeting me! In fact I wont!
    Thanks.

    tGal, thanks for understanding what "fine" really means. There should be a patient dictionary that defines our code words like Fine-meaning a state in which a patient feels like crap, but doesnt want sympathy or is avoiding a long winded explanation of their illness that will go in one ear and out the other, rendering it useless.

    My current meds are Topomax for the headaches and migraines. I have a few less migraines, but the headaches are not the same and last for days at a time. My primary gives me Skelaxon for muscle pain and phenegran for nausea becuase I ask for it. I used to take Plaquenil (and a corse of cortosteroids), and thought that I couldnt live without it...but after about 2 years, I could no longer tell if it was working. I felt awful with Methotrexate, but that was a really rough time health-wise, so its hard to know if it was my body or the methotrexate.

    Anyhow, thanks for the back pat! I needed it. I hope you all are feeling a little better than fine!!!

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    Quote Originally Posted by tgal View Post
    I am so sorry that you are going through this! Way too many of us run on this merry go round for years. You are*
    I wasn't clear about your current meds. Are you still taking plaquenil and steroids? If not did they help when you were on them?

    ( For me FINE is when things suck! At one point in my life I worked in a drug treatment center and fine was the word people used when they didn't want to discuss their feelings so FINE is "F****D Up, Insecure, Neurotic and Emotional. Aerosmith actually wrote a song about it. LOL I am fine way too often!)
    This I did not know. Thanks T. If anyone would know F.I.N.E. it would be Steven Tyler. Ever read Walk This Way? Interesting read.

    ETA: I do know the song, but I didn't know the meaning behind it.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by tgal View Post
    .

    Dannnnnnnggggggggggggg! You go Rob! (Can hear a crowd going "whoop whoop" LOL (now back to your regularly scheduled thread0
    Bad Rheumatologists bring out the inner Drill Instructor in me-

    Click for Fullsize-
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    Quote Originally Posted by rob View Post
    I refuse to allow any Dr. to throw my life into a confused shambles of second guesses as to what is wrong with me. I will not allow any Dr. to endanger my health by taking me off the meds that have worked so well for me in my seven years of living with Lupus.
    Go Rob!!! I want to make this into a plaque to hang on my wall over the kitchen sink so I read it every day!

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