It’s My Party and I’ll Cry if I Want To: Part II
So right as I decided no more pity party, got myself together, I got a big packet from the Mayo Clinic as I was walking out the door.
I had some genetic testing done back in January during my first visit to MC, but because I had such issues with the doctors and they would not return any of my calls or messages, I never received my results. I also hoped that because no one would return my messages or calls that the tests came back normal (many doctors do not call if results are normal). Wrong.
After writing a letter to the CEO of Mayo Clinic a few weeks back about how awful my experience there was and how unprofessional and downright negligent the doctors I saw were, Dr. W (the rheumatologist I saw at Mayo) finally decided to send me my results and a letter of apology. The letter of apology I don’t care about; it’s done, over-with, and he’s not my doctor nor will he ever be. But here is where his irresponsibility and lack of professionalism comes to light:
The genetic testing came back abnormal.
I tested positive for a genetic mutation usually associated with a condition that has no cure and no effective treatment to date, however my mutation is so rare that there is no research correlating it directly to the disease that mutations of that gene are tied to. Uh, okay?
So those results have just been sitting there in a stack of papers or filed away in computer logs for six entire months, along with the 20+ messages I left for the doctor.
I have to say, it’s incredibly validating. There is no proof quite like a genetic mutation to finally chip away that last bit of crazy-making doubt. No, Emily, you are not imagining this. You are not exaggerating. This is very real, no matter who or what tries to invalidate or make you feel otherwise.
I’m not really sure what this means considering I have yet to speak with my current physicians about it (and will update when I have appropriate information. I’m going to try and bump up my appointment for Monday-Wednesday because this is going to eat away at me until I have something to go on), but I just feel like I cannot catch a break.
I don’t ask myself “why me?” It’s a question that answers itself with another question: why not me?
But damn, can’t I just have a week off? Being sick is a full time job, only I’m not reaping the benefits of the hard work. A vacation, some financial security, some fun? Just this once?
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- cranquis said: That is just shameful of Mayo/those docs. What a rough couple days you’ve had, so sorry!
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- xoxosweetheart said: Sorry you had such an irresponsible doc :( What is the condition if you feel like sharing?
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