Thursday, October 31, 2013

When I Drempt of Being a Unique Snowflake, This Is NOT What I Had In Mind!

I don't know if it was a steady diet of fairy tales in my youth, or if all teen-aged girls do this, but I'd often dream of being recognized as special and rare... when they gave me my diagnosis of Autoimmune Hypothyroidism, I did not put a check in the "winning" column. Oh, it was a win, to be sure, to finally have the root of nearly all my symptoms (those not given to me through my battle with MRSA - not a good time, by the way). I'm not sitting at home asking people to take pity on me. Share in my frustration, cry with me through the tough stuff, but don't ever pity me, I am not a woman who needs or wants your pity. So when assumptions are made about me based on conjecture and prejudice, I am truly dumbstruck. I shouldn't be, but it happens every time.

You and I exchange knowing looks, roll our eyes, and say, "better luck next time." But we all know the epic grind it can take to gather up all the medical evidence you need... meanwhile, I'm wondering if my soul is being weighed against the mass of a feather as somehow 10 years of evidence means jack-all, given one "I thought it up so it must be true!" Ten YEARS, and somehow answer B looks to be the better choice in their professional opinion. There I go again.... speechless.

I mean, my Unicorn Sister and I could write volumes on the bits they've left out of the books on our disease, but that's because we both have the same thing. And if this was all a prednisone mistake, how did I know I was in remission and overmedicated? Why did I request to come off my meds for 9 months if it was just one big misdiagnosis? How on earth would I have and MRI showing an INFECTION in my PITUITARY?!? Did I drill a hole into the middle of my brain and expose it to bacteria? I mean, what?! What more do you want than PHOTOGRAPHIC EVIDENCE? And will someone wake me up from this nightmare? Can I get an, "Amen!"?

And why was I so scared to go to med school if this is what I can expect? (I know why I didn't... chronic illness made me drop the program, and I went for my best chance just to get through -- and I'd almost kill for that kind of health again! lol) So who am I kidding, I would have washed out, burnt out or both. And I'm happy with the path I ended up on, so no regrets....

Still, there are some days...

My grandmother knew there were days like this. That's why she didn't let them touch her after her heart attack, and she lived for another 30 years. There is truth behind an old medical school saying, "Don't kid yourself, the moment you walk through that door as their doctor, you start killing your patient." And I agree, there should be caution in medicine! Unless the disease is killing them faster than not intervening, and that's when its appropriate to step in, risks be damned.

So like I found my pain specialist, I will find my endocrinologist. Referrals are unreliable. Sure that fellow doctor is good to you, but you're his peer! That has no relation to how he deals with his patients. So I'll have to come up with my screening questions and start interviewing practices. I miss the old bydls message boards; they had lists of doctors that would be objective about tough cases, and several listings for a place as big as the Front Range. Such a loss. Still, I can do this. It's gonna be a grind, but I can manage it, and make it look awesome doing so.

It would just be nice if the system worked the way its advertised for a change, ya know? Oy vey.

P.S. - I went to the IDA banquet recently and have wonderful pictures to share, but I got sick with a stomach flu shortly after so I'm just now starting to catch up. More soon, I promise!

P.P.S. - Calling myself a Medical Unicorn is just a play on that whole "think horses, not zebras" med school saying, though it is terribly ironic in this context. It's okay to snicker. ;^)

Wednesday, October 23, 2013

The Curse of a Bad Doctor

This is a horror story too many of us know all too well: a bad opinion of some doctor gets in your record, and the ghost of that awful experience haunts you throughout your medical quest, poisoning the options of others before giving you a chance. It's happened to me more than once, and it can ruin entire health networks for you. It's happening to me again, as the notes from the doctor who though she could diagnose me through looking get forwarded on to the new endocrinologist I'm trying to see. I was called to be told that they had no reason to see me, even though the labs contradict everything she states in her letters!! But who cares? She's the head of neuroendocrinology for the state, so who's going to take my word over hers?

So I'm going to have my MRI sent from Seattle, the same MRI that got me in to see the quack (but mysteriously that keeps getting left out of the pile of evidence), and see if he'll take me after that. But even if he does, that doesn't mean he won't have an attitude when I finally do get in to see him... Doctors are funny like that. They don't like it when patients push back, regardless of whether or not it was the right thing to do. All I can do is hope he sees reason, but that too seems in short supply among doctors. If the original doctor I'd gone to see had been reasonable, I wouldn't be in this mess. I mean, really... Who gets lab results that disprove the theory, only to have the theory upheld and the evidence discarded? Isn't that what they teach people NOT to do in the sciences?

She claims my original cortisol stim test was "mildly abnormal" which is dead wrong. My original diagnosing doctor was surprised I wasn't in a coma! She claims that medication changes were based on my "feelings" and never mentions all the labs that supported those "feelings." She claims I've been on prednisone since my original diagnosis, but I was off all medication for 8 months while my disease was in in remission. She claims no worsening vision or diplopia (I have both). She says I dont' have cold or heat intolerance (I have both). She claimed no tingling, burning or numbness (I have all three and I'm on serious medication for all three). She claims I have no muscle weakness or easy bruising, when I told her of both. And she claims I have "emotional lability" (a nice way of saying neurotic) all because I got a little choked up telling her about 10 years of chronic pain... as if I was supposed to be stoic through the whole thing.

And now I can't get a doctor to give me an appointment because of all her lies. What ever happened to "do no harm"??? How on earth do a fix a medical record that's full of LIES?!?