Thursday, March 27, 2014

Appointments and Decisions

So busy. I don't even know how to fit everything in my week when it exhausts me. My phone screen cracked (barely) and now my phone doesn't work at all, so I switched back to my older phone ALSO with a cracked screen that DOES work despite being further cracked than the other one. Stupid phones. I need to invest in the stocks for shock resistent cases and bullet proof screen protectors. I'm so clumsy sometimes. I've dropped numerous phones and either cracked the phone, the screen or wound up running over it when it bounces un-noticed under the car. I've also dropped just as many in water. Total clumsy when it comes to phones. More have died naturally, charge ports being messed up etc. I have the worst phone luck of all time.

On top of all that, I had all my appointments stored in the phone and for some reason the calendar didn't sync so I missed my ENT appointment this week. Just a follow up but still. Now I have 3 appointments the first week of April (though only one for me so far). SDiva has her yearly (along with DCourtley) and then the following day we have to take SDiva to a children's hospital 2.5 hours away because she needs to see a GI doctor and the (only) one closer to us doesn't accept our insurance. And open enrollment for switching isn't until May but won't take until July.

I have most of my appointments written down in my notebook but I'm sure I'll wind up forgetting something. It's just SO easy. Most of my doctors call a day or week (or anywhere in there) before the appointment to remind me so that isn't AS difficult, except last minute I wind up scrambling to get everything I need. But my ENT does NOT call. At all. Ever. I've missed two appointments because of forgetting what time/losing the appointment card. Which I understand is all on me, I'm a grown woman, I SHOULD, in theory, be able to keep track of this stuff but I'm usually so sleepy. And brain fog, I rely HEAVILY on my cell phone or other people to remind me things. And my cell phone broke and didn't back up when I switched like it SHOULD have done. I even tried to sync it manually multiple times. I don't know why it didn't work. Oh well. I guess I'll just have to start taking multiple precautions.

In further news, I called the pharmacy again about the Xy meds. My neuro called it in probably 3 weeks ago and I've only spoke to ONE of the people who was supposed to call me. I even called the second and left a voicemail but still never heard back so I called again this afternoon and was told that they were waiting for the preauthorization. Apparently they'd faxed it to my neuro to submit to my insurance and hadn't heard anything from anyone, neither my insurance or my doctor. I tried calling my doctor at 4:36 and they'd already closed with no option to leave a message unless you know the extention, which I don't. Which seems remarkably irresponsible. Most all doctors I know at least have a messaging system so that if a patient needs help after all but non-emergency they can leave a message that gets checked randomly or at least an answering service. I had this same problem before when I was having numbness and tingling in my hands/arms and face as a side effect to the Topamax. It was the weekend and I wasn't able to get ahold of them and by the time I could, it'd stopped.

I'm debating on calling my Electrophysiologist. I've had a few episodes of heart palpitations on the 18th, 19th and 21st and minor ones infrequently over this week. And also, my calcium channel blocker pretty much does nothing for me. I really wish I were back on beta blockers or something. I can't get allergy shots on the beta but the CCB just does NOT seem to work, at all, even with the increase. I don't know what else to do. The blood pressure meds seem to be holding steady for now so at least there is that. But I just don't know. I can't stand my heart racing like that for the littlest things. I can't even carry JSmiley up the steps without it seriously taxing me. I need Big Daddy to do so much because I just can't. It's so hard. But what can you do?

I still don't know if I want to go to Vandy or not. I haven't decided but I don't know. I want to feel somewhat better even if there isn't a cure and I'd like to know ALL my diagnoses, I'm just that type of person. I want to KNOW everything about me. I don't really know where it comes from, there's probably some psychological explaination but I'm not sure I'd want to hear it. I want to know every single detail about my health (which is partly why I put up with the doctors for 13 years and didn't give up, even now I'm still seeking answers) and I want to know about my family history. I love geneology and I want to do one of those tests that tell you your heritage percentages. Everyone here thinks it's pointless but I feel the NEED to now. Just like with POTS, Dr. M feels as if I DO have POTS but will not officially label me unless Vandy does. That "I honestly believe it's POTS instead of IST, but..." just isn't good enough. I mean, it kind of is but not over all. I sound kind of weird saying my doctor says I most likely have POTS but it isn't official. That irritates me. Just like when I wouldn't let the cardiologist leave it alone at "SOMETHING is wrong but we can't treat it unless we know what it is, so there's nothing we can do." I pushed for more testing then. But I just can't make that YES I want to go or NO I'm ok with not going. I don't like being poked and prodded, I am EXTREMELY wary of other doctors (even my own sometimes). I'm afraid of what answers I will or won't get. But yet, I still have that nagging in my head that I WANT to know. How am I afraid of the journey but still feel the overwhelming sense of NEED to know.

Plus I can't go on my own, not only would the testing likely DRAIN my but I can't drive that far on my own. My current doctor visits kind of drain me. I believe my max is probably about an hour and a half round trip plus testing/waiting/appointment and I start getting really symptomatic. Big Daddy is going with us to the GI because I'm almost certain I can't make the drive by myself. I'm not even sure I'll come out unscathed withOUT driving the whole way (or even at all) since I need to recline and rest after being up for a long period. I might be able to make it there and through the appointment, but the drive home will likely be a bit much. But that's all just a guess since I haven't gone that far in a long time. But I DO know I start feeling drained after some of my more local appointments and they're much closer than the GI or Vandy. I really just don't know. My next appointment isn't until May but I could always call before then, or just to report some of the things I've felt lately but I don't know if I'll be able to make that decision. I guess only time will tell. If I can avoid the anxiety of course. Anyway, it's dinner time and I'm starved. More later!

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