This morning David and I drove a half hour to get to an infectious disease doctor only to find out that the doctor had cancelled the appointment without telling me so because according to the receptionist “there is nothing that they can do for mono). I told her that we waited a month to see the doctor, and that I have Chronic mono, not just mono. But, apparently, even though the doctor has results that show that I do, they still think that there is nothing that can be done for this condition. I argued with the receptionist and she gave me the number for another Swedish infectious disease office that may take me, but I have to get a referral from my primary doctor. So of course, I called my primary and put in a request for this, but there is no knowing as to whether or not this doctor will take me because this is the second infectious disease doctor to turn me down.
I am seeing a hematologist at the end of this month, so that’s good, but really, this just exemplifies how hard of a time people with silent diseases like CAEBV, Lyme, chronic/fatigue and fibromylalgia, etc., have when dealing with the US health care system. Basically, a lot of the time traditional doctors just don’t believe you or don’t even know about the rare condition that you have and dismiss it as if it isn’t real rather than admit their shortcomings. This is why a lot of people with viral conditions or auto-immune diseases find luck with naturopaths. And while I’d love to go to a naturopath, my insurance doesn’t cover it or the testing that one would do, so I only go to mine when I absolutely need it. Right now, I’m hoping that we will be able to find a specialist on my insurance that will run the tests that I want (Lyme, mold exposure, etc), and help me. If this doesn’t happen, though, my Psychiatric Nurse Practitioner has offered to run those tests for me. At least I have a couple of doctors in my court, even if they are Psychiatrists/PNP.
And of course I was really pissed when I found out that we drove all that way today and didn’t even have an appointment. I’ve been looking forward to this appointment for awhile and so was really upset. I took a few minutes to calm down before we drove home, and then we ran a couple of errands. Once I got home I ate lunch and put the massage function on the bed for awhile in order to help the chronic pain that resulted from the stress of all of this. I am feeling better now but am probably going to rest for the remainder of today.
I’ll keep all of you updated about my quests to find answers through regular doctors. If I can’t, I guess there’s always Bastyr College in Seattle, which is a naturopathic college with reduced rates for appointments. It will just be more of an inconvenience to have to go to Seattle more often though.
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