Saturday, December 20, 2014

I Guess I Really Needed To Get That Out

I know it's been a while but I'm still having problems with my cell phone, and it will probably be February or March before I get a knew one considering we are a one income family. My phone drains if I'm on it at all, even when I'm not on there much. It's a poor excuse but I get so little time on it then have to charge it for 4ish hours before I get to use it again. Right now I'm on my tablet but connection is shaky at best. I'm attempting anyway.

I hope that I'll be able to post but so far it isn't even letting me download the blogger app. Hmph. Anyway,  not much has happened in the last little bit.  I finally got both my paperwork and appointments for Vanderbilt. I am a bit apprehensive to say the least. I always get anxious about doctors, especially new ones.  I've had such a long journey just to get the first diagnosis and had to pretty much fight for each of them,  tooth and nail. It took 13 years and multiple doctors just to get the NCS diagnosis. I mean really. 3 states (I live on the border so I see doctors in 2 states plus I lived in South Carolina the first 5 years of that 13), 2 Emergency Rooms/hospitals in 2 of those states,  2 pediatricians (since it started at age 10), one family practice doc, one FNP, 3 pregnancies with 4 OB/GYNs (plus the last ones partners since you had to see them all AND their NP) and TWO CARDIOLOGISTS. You know the only people who gave a damn/acted like it was actually something, instead of brushing it off was 2 of the many OBs I saw. The 3rd and 4th. My last 2 pregnancies. THEY sent me for testing. They referred me to cardiology. But it wasn't until after my last pregnancy, when I had to literally argue with my cardiologist that it wasn't pregnancy related, wasn't anxiety, wasn't nothing. It was something and needed treatment. But all the doctors but those 2 OBs just brushed it off. I'm literally afraid of going to the doctor most days. Before most appointments, I get so anxious that they are going to dismiss me, or tell me that I am not sick/don't have xyz. Even the two doctors I see now, they KNOW I have a LOT going on and know that there is more they haven't found. I'll give my EP props, he's at least sending me to Vanderbilt. But I just feel like they aren't in any hurry to investigate further themselves. And I'm afraid I will get the same at Vanderbilt. I'm hoping for a positive visit but I'm also afraid.

I've forgotten when my appointments are but I think it's mid-late April. I'll have to dig out the paperwork. I just hope it shows stuff. I'm always afraid they won't find anything. Or they'll brush off test results. I mean, my cardiologist thought all my testing, the echo,  the stress test, etc,  that they were bad/abnormal for stupid reasons instead of an actual medical problem. My neuro thought I couldn't possibly have narcolepsy even with the test results showing classic positive. I'm so bitter because of all of this. The doctors who didn't believe me,  the ones who were downright hateful, the ones who tried to come up with alternative explanations. I admit it.  I am bitter. And it sucks. I wish it were easy. I wish I could just,  like,  give one vial of blood and have some computer analyze it and tell me what all is wrong. Man,  I wish it was that simple.

I don't even really mind the testing. Most of it is fascinating (if sometimes a bit painful). I mean, the tilt test sucked but was still interesting. Echoes and other tests like that were interesting. Seeing your heart on a screen is just as interesting as seeing a baby via ultrasound. Watching heart rhythms. Ok, so the testing for neuropathy sucked. But it was cool. In theory. I'm no sadist. Getting shocked repeatedly in my arm and leg hurt. The double biopsies above my ankles... Still got the scars. But the instruments and procedures as a whole are cool. Sleep studies, I mean, studying brain waves and stuff. It's fascinating. I just don't like when Murphy's Law rears up and bites me. I *know* I'm sick. I just hope the testing shows.

I have 3 appointments in January, ENT, Neuro, and Gynecology. One in February, Electrophysiology. Then Vanderbilt in April. I want to ask for more testing here,  like something Vanderbilt may not do. I don't know what though. I just feel like nothing has been done for a while. I want testing for the disorders that others with Dysautonomia have,  like Sjergens, or MCAD/MCAS/etc, or EDS,  or well, you get the picture. I want a non doubting doctor to review the tests I've had in the past and tell me, now that they KNOW something is up, we're those tests really "fine" or did they just say it was because they used an alternate explanation, like my cardiologist did on all the tests before the tilt. I already know he brushed off two tests,  possibly more. So what did they REALLY mean. I need to get copies of all my records to have on hand but with that many doctors, it's a bit daunting. I don't even remember the pedi in South Carolina. Plus,  do they even keep records that long? That began over 15 years ago. I haven't been in SC as a patient in 10 years. So how the hell do I get or even FIND those records. And considering my shaky, premature birth and broken blood vessels and spending weeks in the hospital, I want THOSE records too. So 2 hospitals in Illinois (possibly pediatric records since I lived there a while), 1 in South Carolina, plus that pediatrician, 1 in Tennessee plus all those doctors and the ones in Virginia. I know all the local ones. And the hospitals. But how long do they keep records. I'm coming up on 26, in May. Plus I'm pretty sure you have to pay them to give them to you. It seems a bit daunting. And at least some of them will likely piss me off (the docs who brushed me off/yelled/said it was anxiety etc).

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