I am alive and doing OK. I didn't mean for things to get so quiet around here. June was a month of struggle for me as I wrestled with some serious questions. Like Why now? How did this happen? Now what? How soon? Do I have to go back in the box? etc. Oddly enough never a why me? did I ask or even really think about or have cross my mind.
I did have to scratch my July 14th "Sweet 16" post. I was really excited about sharing it with everyone. Had a pretty good post written up and ready to go. Now I won't know until after that date as to if I can share it or not. So to be safe I have put it on hold and am trying to figure out something else to share on that date if anything.
So what's been up with me? why the silent treatment? Grab something to drink, put your feet up and get comfortable this is going to be long.
I haven't been feeling right for a while now. I often don't feel right because of all the various health issues I have the biggie being something called CMT, throw in a little Fibromyalgia, some Chronic Fatigue, a dash of hypothyroidism, and stress that would send most people to an early grave... and well it is no wonder I feel off most of the time. So what is different about this time?
It started several years ago with a feeling like I had something stuck in my throat from time to time. It progressed to if I laid in certain positions or held my head just so that it felt like a cat was poking its paw into the spot at the base of my neck and just above my chest. Go ahead and laugh at this description but when I was a child there was a cat who would sit on my mother's chest when she was sleeping and place it's front paws right there and slowly push down until she woke up in a state of fright. The cat only did it to me once but it left a very strong lasting impression. It took time but five years ago I plucked up the courage to ask my doctor about it. I was told that it wasn't possible to have anything going on to make me feel that way. So I dropped it.
Due to circumstances beyond my control, I wound up changing doctors several time and each time I mentioned that this sensation was getting worse, I was brushed off. It went from well that's to be expected because you have a cold with a sore throat, that isn't unusual for people who had surgery like you did, to *coughnutjobcough*, to look just admit it's a figment of your imagination and your doing this for attention here take this anti-depressant or valium.... Then I would be reassigned to a new doctor.
I thought I had hope around 2010 because a new doctor (an Endocrinologist) was intrigued by my whacked out lab work and weird symptoms and hodgepodge of diagnoses. Especially by the genetics back track in regards to the CMT. He ordered some testing to be done and wound up in a medical coverage SNAFU to get some of it pre-approved and authorized. He called me saying that it had finally been approved. An appointment is scheduled for his next available two months later to get started with all the testing.
Well something comes up and I have to change my appointment. (Que the dj to play "Another One Bites The Dust" a song that is highly appropriate for medical providers and I swear is there theme song) You could imagine the sadness and disappointment that I felt when I was told that the office was just going to call me to inform me that the appointment was being cancelled. Why? Because for some reason the doctor was no longer here to practice medicine or see patients. I was promised that my name would be taken down and put on a list to be gotten in for follow up just as soon as a replacement doctor was found. OK fine. Like the sucker that I am, I fell for it. Hook, line and sinker for about 6 months. then I called and asked and was told just a temp was in place and then I called 6 months later and was told ever so firmly and politely not to call them as they would call me when a doctor was available.
Fast forward to last year, I finally have a doctor that is willing to see me regularly. He's willing to deal with my quirks of not running true to form and the progressive nature of the CMT. I finally trust him enough to mention that I think I need to have a speech eval because I'm struggling to take my medication. It's getting caught in my throat and same with food and no matter how much I drink it doesn't dislodge it. I mention the new information about CMT and my concern about my mother's diagnoses. He agrees to some basic lab work and a referral to the Speech Therapist.
I see the speech therapist and she gives me some suggestions and refers me to have a swallow study done. Only that doesn't happen because of my list of allergies and a shortage of Barium. mean while my labs trickle in and they are not at all what the doctor was expecting. i was expecting it but no where near as bad as the numbers showed. I was totally off the charts and so far from normal that it might as well have been on Pluto.
I asked to get into an Endocrinologist and for some additional labs. I was told I didn't need to get back into an Endo just yet and only some of the additional labs were done. Waited a little bit got a phone call within a few days to a week. A record considering usually lab results don't come back for 2 to 6 weeks normally. the doctor decides to adjust my meds and redo the testing.
Time passes along I'm taking my meds like clock work and labs are redrawn. The results are better but no where good enough for someone with my history. A decision is made to get me into an Endocrinologist. I spoke to the scheduler and she wanted to know who I wanted to see. I didn't know how to answer that. I wanted the dr I saw roughly 15 years ago but she had retired i was told. the last one I had seen left and I was on the call as soon as a new one was hired list. I was stunned to learn that the dept had actually had a replacement and that the replacement had been there awhile. i was also very sad and hurt that I wasn't contacted to get in like I had been promised.
So the scheduler said she'd get me in with the Endo she sees. Said I'd like him. I don't know how she did it but she was able to get me in towards the end of April. I saw this new doctor with a lot of apprehension and uncertainty. i was less than impressed when it sounded like I was getting the same ol' same old coughnutjobcough routine. So I gave the long list of 20 some years of dealing with issues. I named the last Endo I saw and explained that he had wanted to do testing because of these issues and that the change was far more now than it was when I saw him especially with the whacky labs.
So he looked in my file and found that doctor's notes and reluctantly agreed to do an ultrasound, changed my meds yet again, and wanted me back in 6 weeks with 3 additional lab draws. I was lucky to get the ultrasound scheduled just a few days later.
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