The words “I believe you” and their effects in many avenues of life.


I had the appointment with the rheumatologist yesterday. This was the appointment that had been messing with my mind for a while. I knew that if this doctor didn’t take my symptoms seriously and actually do something…I was not going to take it well. My safety was definitely an issue.

So, I went in expecting less than nothing. I expected him to barely listen to me and to blow me off and say what my ear,nose and throat doctor told me: “your body is just weird”.

I went in prepared. I read on the internet that a good way to get a doctor to listen to you is to list your symptoms in the order that are the most worrisome or bothersome to you and then go from there, so I typed up a list and printed it out. I started with the fact that my lymph nodes have been swelling constantly for over two years now and that it’s been documented by doctors. I told him about my parotid gland swelling a few weeks ago and he interrupted me. He said, “You just told me, but go on reading.” I was puzzled but I went on with my list, the extreme physical pain, the extreme fatigue, the feeling of being sick without ever actually getting sick. I told him about my hands turning into ice no matter how warm it is and staying that way for hours until they finally get warm which then causes pain. I told him about my ENT saying that I have carotidynia (swelling around my carotid artery) and that it comes every two months or so, sometime more. Whew! After I finished reading my list. I kind of hung my head, waiting for the blow the inevitable blow that would come like when my ENT said for me to wash my hands more and take some zinc because people get colds all year. I waited and he said that everything I said could be explained by something called Sjogren’s Syndrome. He told to wait and he was going to get a brochure to show me. After he walked out the door I almost fell out of my chair. I couldn’t think clearly for a while until he came back. I had to ask him; “You believe me? You mean you don’t think that I’m making it up? That it’s in my head?” He said “I believe you.” and I’m not sure how I didn’t fall on the floor in relief.

He gave me the brochure and told me that he wanted me to read it and see if it sounds like me. He checked me physically and asked some spot-on questions and said he wanted to do a few blood tests but not repeating ones that had already been done by other doctors. I told him blood test are not my friends as I’ll have weird results and normal ones. He said that it’s common with this syndrome. He also remembered though that last year, they had done test on me that implied that my muscles were being damaged back then. Back then he had a woman, maybe a P.A. who would carry some of his patient load and she brushed it of after the tests came back high twice. He’s going to look over past test and over all the records from other doctors that I had copied to him. I’m to see him in on the 6th and we’ll talk again. In the meantime I’m supposed to research Sjogren’s on the internet too. Huh, a doctor not threatened by patients who look stuff up on the internet. Who knew?

The words “I believe you.” have a lot of power. I’ve noticed that in therapy of course. Having a therapist who believes you when you tell them that someone hurt you, and they believe you even when no one else did or when the person hurting you said you were making it up or being overly sensitive. That’s powerful. Having a psychiatrist who puts your symptoms together and can diagnose you with something real and then treats you with something more than saying; “You need to exercise more.”, that’s powerful. This was powerful too. This doctor seemed to understand my frustration even though i stayed calm the whole time. It’s like he knew that I’d been to several doctors only to be blown off, but I didn’t tell him that. He repeated himself and said “This brochure means that I believe you.” and he patted me on the shoulder and told me make an appointment for two weeks and go downstairs to get my blood drawn.

Just like that, I had a doctor who finally listened. I don’t know what will happen in two weeks. I do know that if he hadn’t listened to me yesterday, I may have ended up in the E.R. last night with self-inflicted knife wounds. I was at the end of what I could handle and thankfully I was pulled back a little. I’m grateful for that.

I can’t be completely optimistic, that just wouldn’t be like me would it? lol! 😉 Two weeks now seems like forever and I keep thinking that yesterday was a fluke and that when I go back he’ll say that he was wrong and there’s nothing wrong and nothing he can do. He’ll tell me to take ibuprofen and follow-up in a year. I have to think that way because expecting the worse is how I function in life. Huh, I’m fun right?

My psychiatrist left to go out-of-town for a week yesterday which means both he and my therapist are gone for now. Scary. My therapist is coming back for a few days and I will see her on the 30th and then once more a couple of days later before she goes back. I’m kind of stretched all over the place in many ways.

I wake up everyday and some lymph nodes somewhere are swollen and hurting, I’m tired but I get fatigued to the point where I can’t walk or sit upright anymore and I have to lay down. The body pain is beyond desription. On the other side, I’ve gained more weight even though I’ve been eating fat-free, plain yogure and granola. I’m considering starving myself again so I can at least stop wanting to vomit at my own image. I’m working my way to it by trying to eat less and less each day. I have no mental health team at the moment which has never happened and I’m very aware that I need to keep in mind that my husband is a great guy so I need to put in more effort to pretend with him, so I don’t take my anguish and craziness on him. I still like the idea of the asylum but meeting the doctor yesterday eased some of the pressure. If I had a choice thought, I’d find that padded cell and live there. I don’t know how I am or what I’m doing. I just know that someone finally listened and I’m going to try to hold on to that until something else happens later today to beat me down. And yes, I’m aware of how perky I sound 😛

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About CimmarianInk

Abuse Survivor Diagnosed with Bipolar Disorder PTSD and Dissociative Identity Disorder (DID) also known as Multiple Personalities
This entry was posted in abuse, bipolar disorder, Child Abuse, Child Molestation, depersonalization, depression, derealization, DID, dissociation, dissociative fugue, dissociative identity disorder, fibromyalgia, Incest, Mania, Mental Health, Multiple Personalities, neglect, Post Traumatic Stress Disorder, Psychiatric Drugs, Psychiatric medication, Psychiatry, PTSD, Rape, self-harm, Sexual Abuse, Trauma and tagged , , , , . Bookmark the permalink.

15 Responses to The words “I believe you” and their effects in many avenues of life.

  1. empty says:

    I’m SO glad you finally found a doctor who listened. When I was reading he’d interrupted you, I was thinking, this doesn’t sound good. When I get time I’m going to do some searching on the Internet to read more about it. Don’t you feel validated now? Hip, hip hooray!!!

    jo

  2. Freasha1964 says:

    Hi Tai,
    That is so fantastic. I believed you, too.
    I can understand your expecting less than nothing. It sounds like if that had transpired you would have been in dire straits. Thank goodness he believed you. What a shame that you had to go through so much before reaching this point. I think it might be safe to keep your hopes up now. I ‘d be feeling relieved and angry about now if I were you.
    Have you had the time to read about Sjogren’s Syndrome? I am VERY interested in knowing if it fits you. (Never heard of it, though).

    • tai0316 says:

      I’ll reply to you and jo here. Yes, I feel validated while still thinking that he’ll take it back two weeok lol!

      As for Sjogren’s and whether I think it fits? Yes, if you understand what it can entail. I’ll cut and paste stuff that applies in my case (if the doctor doesn’t throw me under a bus, which I will do myself if he takes my answers back)
      If you look at the basics, it’s an autoimmune disease. The main things it does is affect salivary glands like the parotid and it causes them not to work right like tears and dry mouth. BUT since sjogren’s is autoimmune, if it afffects other body systems then it does other stuff and it’s the “other stuff” that I can’t handle. That other stuff, for me, is
      Raynaud’s: In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas. During an attack of Raynaud’s, affected areas of your skin usually turn white at first. Then, the affected areas often turn blue, feel cold and numb, and your sensory perception is dulled. As circulation improves, the affected areas may turn red, throb, tingle or swell. The order of the changes of color isn’t the same for all people, and not everyone experiences all three colors.
      Vasculitis– Vasculitis is an inflammation of your blood vessels.General signs and symptoms that most people with vasculitis experience include fatigue, muscle and joint pain, nerve problems, such as numbness or weakness. I’m kind of wondering if this is why there’s swelling around my carotid? Don’t know.
      Dryness– that is an issue in my mouth. My tongue has cracks like the Sahara desert and my lips crack and bleed regularly. Also skin dryness is a big problem, but I could deal with that.
      Cancer (sort of)- There is a slight increase of getting cancer of the saliva glands but I’m not worried. My lot in life is to get stuff that annoys and pisses me off not kills me. I’m more likely to die from killing myself than anything, or maybe tripping over a pothole and breaking my neck. 😉

      That’s a bit of it. Glad you asked? lol! Don’t worry, I’m tired of complaining, I’m turning into the person I hate and I’ve got to stop. That means no complaining. Remind me ok?

      • Freasha1964 says:

        Yes, I AM glad I asked.
        My neighbor has Raynaud’s. None of these symptoms sound very inviting.
        Anyway, I kind of slapped my head and said – of course! It is an autoimmune condition! That sure makes sense.
        Let’s hope there is some treatment that will make life livable for you.
        And you still have your sense of humor, so I am appreciating it.

      • tai0316 says:

        Humor, what would we do without it?

  3. roseroars says:

    So…you change color, swell up, and have dry skin…..I know what’s going on. You are a reptile. Ha-ha-ha!!! Oh god, I’m funny!

    My rheumatologist also put me at ease a couple of years ago.

    My favorite thing to do is write down my symptoms, dates or times, concerns, etc., on nice stationary and go over it with the doctor. That always works and I get the help I need.

    I’m so happy you’re going in the right direction finally.

    Lisa

    • tai0316 says:

      Ha! If I’m a reptile i want the cool eyes to go with it!

      Thanks Lisa, I’m still being cautious though. I won’t even tell anyone besides you guys and my therapist what he said. I need official words before I accept stuff, always have.

      • castorgirl says:

        Ohhh I’m watching the series Angel from the start… can you get the vampire eyes??? That would be cool!!

      • tai0316 says:

        LOL!

        You forget that I am one of the hated Twilight fans (despite the fact that I’m not a screaming, swooning iodiotic tween and I actually read the books before the movie craziness started), point being that if I was a good vampire, my eyes would be gold and if I was bad they would be blood red. Actually, isn’t there a frog or something that has bright red eyes? That would be cool.

        I love where our conversations can go lol!

      • castorgirl says:

        Twilight… You have GOT to be kidding me!!! The dude sparkles in the daylight for goodness sake!! How is that ANY part of vampire mythology???? Then there’s the whole sort of creepy stalker thing that he does with Bella… How does that empower anyone????

        I firmly believe that Buffy needs to come back!! *cough* try to think of the pic as powerful, rather than sexualisation… it was for a meme after all 🙂

        I got the first Twilight movie out because of all the hype, and watched it on the couch with my lip doing the whole Elvis/what the heck??? thing, and my head titled to the side.

        Yet, I know that really intelligent people love Twilight… different tastes I suppose. I prefer Joss Whedon over Stephanie Meyers.

      • tai0316 says:

        😉 Actually, i think Joss Whedon is awesome so we’re on the same page there haha. Buffy kicked ass so as a girl I like that too. Let’s shake hands lol! All I can say is: the books are so different than the tweeny movies that i can’t compare them. Personally the movies embarrass me hehe.

        Joss Whedon is badass and he’s going to rock directing the Avengers movie for Marvel woohoo!

  4. castorgirl says:

    Yay for validation!!! Yay for a doctor who listens!!!
    Sort of makes you think that he’ll do the same in two weeks… 🙂

    It’s amazing the difference it can make to feel as if someone is actually listening to you. Odd things doctors… some of them listen, but don’t have the skills to take the problem further; some are like cold fish, but have the skills to know when to take it further.

    I hope this gives you the boost you need to know that you can keep asking questions.

    One thing I meant to ask before, but keep forgetting – do you have pain clinics over there? We have them here, and they are brilliant and helping those who are in chronic pain to manage their symptoms and pain.

    Take care,
    CG

    • tai0316 says:

      Yay indeed 🙂 I wish I could be more “yay” about it but we’ll see in a couple of weeks. And yes, someone listening is HUGE!

      As for pain clinics, I don’t know that I ever would have looked into one since I was diagnosed with fibromyalgia and not everyone takes that seriously despite the commericals for Lyrica etc. I don’t know if we have any around here or not. I’m little “Miss Official”, I can’t proceed unless he stamps this diagnosis on my record, otherwise I’ll just go back to how I was before, feeling defeated and self-pitying. I guess that I mean that I’d want the people at the clinic to take me seriously so that they would really help me. Sounds dumb I know.

      • castorgirl says:

        Yup, you have every right to be cautious about the dr and tests and everything… but I’m going to be optimistic on your behalf 🙂

        As for pain clinics, I’m not sure of the procedure about getting referred to one – not even sure if you need a referral over there?? Hmm, it’s something to ask about. People here are often referred to them when they experience constant pain for long durations, and you would qualify under that criteria. The thing is, the pain effects your quality of life, so it should be addressed in some way. It’s something to ask about, and is independent of any diagnosis.

        It’s not dumb to want to be believed, we all do. I think this is often more difficult for survivors who are told that their feelings are invalid. Try to remember that the dr listened to you before, so the chances are, he will listen to you again.

        Take care,
        CG

      • tai0316 says:

        Thank you CG, you are always so supportive, one of the many things I love about you!

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