Monday, April 28, 2014

Appointment Rambles!

Today's appointment was surprisingly good. I know I hold a lot of stock in past treatment/first impressions, especially doctors. But she surprised me. She seemed more knowledgeable and she said she'd been discussing my case with Dr. M. She told me to start salt tabs and REALLY try to increase my fluids more and suggested compression stockings (which I already have) and said the next strength up would possibly be helpful. She was really impressed with my documentation and said it was a good thing.

She didn't want to do the EP Study at this time but ordered another 30 day loop monitor except this one I don't take off except to shower. I'm not sure if I'll have any success but it's worth a shot I guess. I go back on Friday for that then the end of July for a follow up with Dr. M. My file as usual says (JM MD only), first she wrote 6 months, then 3, then 2 months or 6 month follow up so that was a bit spastic, plus they are actually advocating for me to go to Vanderbilt, she wrote that in the notes but when the scheduler went to schedule it, it'd been pulled so she has to get it put back in there. If I don't hear something by Thursday morning, I'll call and remind them.

I called the pharmacy and I had to confirm that my co-pay is $0.00 ( O.o ) before they can procede. Still waiting on YET another phone call. >.>

But my patient summary included POTS for the first time! It's 3 pages long, one being mainly meds and stuff. Anyway, more later as I get it.

Saturday, April 26, 2014

Writing, writing, writing

I've spent all day, off and on, writing down things in a 5 subject notebook. I'm definitely not going to fill it any time soon but I hope it'll come in handy. I get all nervous trying to get my point across to doctor. Especially one I've had any amount of trouble with. My EP I'd only take my stats/vitals. His PA, I'm taking every piece of info I can find in addition to the stats. Same with my neuro because, while she's a million times better than the PA, she's made me mad and brushed me off before. Even with my MSLT positive for N, she refused to believe it until I went to a second sleep specialist for consult. The one who simply said, to the effect of, "If it's positive, it's positive." But that it could ALSO be REM behavior disorder. I said no at the time because I wasn't aware I mildly act out dreams. It wasn't until Big Daddy described something later that I realized I do in some instances. When I told my neuro, she brushed me off. Though it was her that suggested RBD as a possibility to begin with. >.> SO, mostly ok, needs improvement.

I set up an appointment to see about neuropathy and I'm afraid of being brushed off again so naturally, I'm writing down a lot of the different neuropathies. >.>

Speaking of neurology. I had a missed call from the pharmacy. Called back less than 10 minutes later, and NATURALLY, they're closed on the weekends. Closed enough to call me then not answer 7 minutes later. So, point for calling on the weekend, despite being closed. But -1million points for everything else. Including calling on the weekend while I'm asleep. Waking me up, then not answering.

So much shit pisses me off. >.> OBVIOUSLY if you want ANYTHING done, it has to be done by you.

Friday, April 25, 2014

Everything and Nothing

I need some teeth pulled. Like yesterday. I don't know what they are, molars or wisdom teeth but either way, they need to come OUT. NOW. I'm in so much pain, it isn't even funny. All day every day, the pain moves. Either the base of my skull in the right, my jaw, the right side of my nose/sinus, right side of my head (top), below my ear. I don't know what to do. I am taking every medicine I have for migraines, and it's not doing much. The teeth are trying to come in and there's no room. It does it every year but the last two were the absolute worst and it gets worse each year. Last year I could barely open my mouth for over a week.

On top of that, earlier this week, a stomach virus hit everyone BUT Big Daddy. In rapid succession. It lingered with me and I got dehydrated. My heart rate wouldn't go below 100 (except every so often, and only briefly), my blood pressure tanked when standing. When it tanked, I had severe heart palpitations, I also had chest pain and shortness of breath. I went to the ER and got 2 liters of saline, something mild for pain, and nausea. I didn't expect much else. I'm not sure what happened but I *think* the end of the IV port nicked my vein elsewhere. It's really sore almost 2 inches from the puncture site. When he started the second bag of saline it immediately hurt where it's sore now, and again when he flushed the port. It hurts to extend my arm. Well, more sore than pain.

To top it off, I fucked up and called my EP (last post, I believe). They wanted me to come in sooner. To see the physicians assistant. I nearly had a full on panic attack. I REALLY hate seeing her. I'm already anticipating a fight. I don't know what I want. All I know is no meds are fully helping, none of the tests have shown heart palps but I've had them since 2007. I think, at MINIMUM, I want an electrophysiology study. I really want to talk to Dr. M instead. I'm going to try to take a notebook full of information and hopefully I don't get a brush off. If I do I'll probably file a complaint at the very least. And make sure I NEVER see her again.

I've also scheduled an appointment with my neurologist about testing for small fiber neuropathy (and autonomic and peripheral neuropathy). It's next month. I got a call on Monday that my insurance had approved the Xyrem (FINALLY) and that they'd faxed the pharmacy the acceptance letter. I called the pharmacy yesterday and they haven't gotten anything. WHAT the fuck is going on with that shit?!?! It takes a million phone calls between all of us just to get the approval processing. The woman at the pharmacy said they hadn't gotten the fax (is there a block in the lines or some shit?) but she'd "send it on" to someone who is supposed to call my insurance to confirm. No call today. Of course. I'm getting SO fed up with this shit. I called either my doctor or the pharmacy WEEKLY, and now I'm still calling. It's fucking ridiculous. Several "we called, they say they faxed but we didn't get anything". How many times does a fax "get lost"? I mean really? >.>

Thursday, April 17, 2014

I'm That Girl

I'm pretty sure I temporally turned into the patient office staff laugh at/hate. I called my EP several weeks ago over compression stockings. Never got a call back. Called yesterday and left a rambling voicemail requesting a call back. I identified myself, my date of birth, everything they normally ask to confirm you're you, everything my neuro needs to call back, no call back. Called today and left a pissy voicemail spelling out my name. My phone number is in my chart. The info needed to access my chart is in the voicemail. So WHY no phone call? Perhaps because I didn't rattle off my phone number? Thinking about it after the fact, the instructions say leave name and phone number. I think I left it at least once but still. It's IN my file.

But I've seen medical bloggers blog and laugh about patients calling and leaving no identifying information. I'm embarrassed. Rationally, I know it's not TOO bad. I did leave plenty of identifying information, they have my number (they use it to reschedule my appointments every time), I left everything else and who treats me. But still. I want to call tomorrow (and leave my number) but I'm embarrassed and afraid they'll remember the crazy chick who keeps calling. >.>

Sunday, April 13, 2014

Poor Man's Tilt

So I decided to do a series of Poor Man's Tilt Table Tests so that I could take the readings to my EP next month to further prove my point more that just him saying he suspected I have POTS. I've been researching so much this month it isn't even funny and trying my best to log information and stats so that I'll have plenty to present to him.

I did two different ones in two days. The first one I did was only 5 minutes. My blood pressure did not drop in that time period (though it did fluctuate on occasion) but rose, fairly steadily. I didn't do longer than the 10 minute one and I'm not sure about the full criteria for diagnosing NCS but I've already gotten it from an extended regular Tilt Table Test where my BP dropped and my heart stopped (asystole). So based on the face that it takes longer than the guidelines for OI for my BP and heart rate to drop (but does during the extended tilt), and the fact that my HR rises significantly (both immediately and sustained in a steady climb over the period of the PMTTT) I surmise that I have both NCS and POTS. Here's the results from the two I did today and yesterday.

Yesterday I did the 5 minute test. Immediately upon standing my BP rose from 113/77 HR 72 (laying) to 132/82 HR 99. That immediately upon standing reading made my PP 50. However it dropped down to 116/85. I guess that might be positive for OI as well but then it raises steadily and/or fluctuates. The data is obviously bottom up in both instances. In every instance it jumps, both BP and HR when I go from laying to standing, then drops down a little, then slowly gradually (mostly) raises. Also raising is my heart rate. From 72 to 122 in 5 minutes (which is 50 bpm rise) and 78 to 134 (a 58 bpm rise). Which is well over the 30 pt increase in 10 minutes criteria for diagnosing POTS through a tilt.

But also, I never noticed before, but my pulse pressure also drops. The lowest recorded was 18, that I remember. If you noticed, 118/100 isn't the only weird reading I got, however I redid it. I got an error reading then it went back to normal so I erased the other reading and put in the "normal" reading. The second time (the one recorded), it stopped reading after that. I kept getting error readings so I quit trying, I got two errors when trying to repeat the 9 minute reading and 2 errors when trying to actually GET the 10 minute reading, which is why there are only readings for up to 9 minutes and not 10. I'm not sure what that means. I'll report that too.

Thursday, April 10, 2014

Pains and Points

Big Daddy scored points today. I'm always complaining of pain, specifically in the neck/back region (but also others). I go through so many products it isn't even funny. thermacare, muscle rub, icy hot, etc. The gels, the sticks (like deodorant only muscle rub), the creams, patches, you name it. I need it. Big Daddy usually does the honors even though he hates the feeling of creams/lotions/gels on his hands. It's nice that he does that even though he hates it. Which is also why he buys the sticks of it. He doesn't always have to rub it in by hand.

Anyway. Tonight he goes to the store with the older girls and said he was going to bring me a surprise. They didn't have what he originally planned but he took a trip over to the pharmacy section and bought some Stopain spray. It works SO well. He also looked at I'm guessing caboodles (by his description). He bought me a big travel toiletries case that I use for most of my medical things. Meds, sugar testing things (for if I suspect hypoglycemia and to raise it), creams, rubs, eye drops, nose spray, anbesol, etc. Just basic necessities and comforts. I have my heart rate watch/strap and epi-pen in there too. If I had more than just the bp machine I'd be able to use a larger case but I'm fairly sure it's the only thing I currently have that doesn't fit in the case. It's kind of irritating and sad thinking about how I'm not quite 25 and need/use all of that and could probably use more.

Wednesday, April 9, 2014

Neurology Follies, Ped Gastroenterology and a road trip.

Still waiting on my prior authorization. I didn't call on Monday and Tuesday we were at the Pediatric GI for SDiva. It took us almost 3 hours to get there. Big Daddy went with us since I most likely wouldn't have been able to make the drive on my own. So I called first thing this morning and left a voicemail. The nurse called me back around lunch and said they HAD finally received the first form and sent it back but that they'd sent ANOTHER one and now they were working with that form and she'd keep me updated. I'll probably call back on Friday. She said normally the pharmacy does most of that work so she was surprised they were sending it to them. This is driving me crazy. If we don't get it situated soon and a follow up scheduled I'm going to go ahead and request an appointment for neuropathy symptoms.

As for the Ped. GI, like I said, it took us almost 3 hours to get there. There was road work outside the city and in the neighboring cities, with detours and everything. One lane traffic on the interstate doing max 25 miles per hour. We got there at 11 for a 11:30 appointment (after leaving home at 8:20 AM). It was nearly 2 before we saw the doctor, so a little over 2 hours of sitting there. The doctor asked about a diagnosis that had been written down, apparently either her normal pediatrician suspected a possible cause or something because he asked if it had been diagnosed with a scope and I said I'd never heard of anything so he looked again and saw a question mark beside it meaning the doctor suspected it. Anyway, he ordered both an endoscopy and a colonoscopy. He wanted to do it next week but Big Daddy needs advance notice to get off and I can't do it alone much less repeat it next week.

The trip took a lot out of me. I wore my compression stockings and still felt minor discomfort in my legs, my arms were losing some feeling if they weren't kept down. I fell asleep at least once (Big Daddy said twice but I don't remember the first one) on the way home and literally felt as if I couldn't move once I got back into bed and relaxed. Then I slept all night. Big Daddy laid out the girls clothes for school, made sure their homework was back in their bags and woke them up this morning for me. All I had to do was fix their hair, make DCourtley's snack (kindergarten eats last so they require a daily snack). I went back to sleep shortly after and slept until after 12. I feel much better now but still not 100% but still, I didn't expect that to drain me QUITE as much as it did. I mean we were home before 5 and I did next to nothing until bed and slept all night. But I guess it'll give me some idea of what to expect next time. I'm for sure taking headphones or something, and maybe I need to invest in stronger compression. The ones I have now work well for around the house and for a while even under strain but I still notice discomfort after a while, whether sitting or whatever. And I want to get some compression sleeves too. My arms are just as bad as my legs. I was able to recline a bit but full on laying isn't an option. I did take plenty of fluid to stay hydrated. And we stopped about 3 times to stretch legs etc on the way there. I'm not sure what else I can do.

We have to go back next month and either stay at the Ronald McDonald house (if they have an opening) the day/night before or leave around 4:15 AM the day of. THAT will REALLY mess with me. My narcolepsy will go crazy not to mention my dysautonomia. That is one of the options but honestly, the least preferential of the two. I'm not sure what to do about DCourtley. We took her with us this time because we had no way to get her from school (since it was after 4 when we got home) but I don't think it's necessarily right to keep her out every time. I'm fairly certain we can find her a way TO school but I don't know about home. And I don't feel comfortable leaving JSmiley with anyone but I don't know if we can bring her. The nurse asked if we'd be able to find childcare or if we'd have to bring them. Of course, it'd probably be better if we COULD find childcare for them as we'll be waiting on the procedures plus 1-2 hours in recovery for the sedation. That's just yet another thing to figure out.

Anyway, I'm still not feeling that great so I'm going to go relax for a bit. Later.

Sunday, April 6, 2014

Neuropathy and Neurology

Still waiting. Always and forever waiting. I called my neuro's nurse on Friday (4/4/14), a week after the first check call. The nurse said she had called and they said they were waiting on a form but that she'd never gotten one. Which confused me so I reminded her about our conversation last week where she'd said the pharmacy sent the prior auth to the old number (which, let me remind you, is on the first floor of the same building, in their former office which they shared with Urology, that is still there). I don't understand why they wouldn't/couldn't take it up there. Anyway, she said she still hadn't gotten anything, that the number they sent it to the second time was correct but sometimes things don't go through. And to keep calling her if I hadn't heard anything.

It's been nearly a month (the 10th is a month I think) since my neuro sent in the prescription. That is absolutely ridiculous. I suppose I'll call tomorrow during lunch and see if they'd received it yet. And Wednesday. And Friday. I mean, it's a fax, not snail mail. And considering the fact that my neuro pushed for this at EVERY appointment after my narcolepsy diagnosis, I really shouldn't be the only one trying so damn hard to get it approved. Plus, they wouldn't schedule a follow up until after I'd gotten everything situated. They have to see me regularly on Xyrem, I believe she said every 3 months and I think they do blood work at those appointments. But scheduling depends on everything getting situated.

I don't know but I think she's the doctor I need to see about testing for neuropathy. I've got almost/all symptoms of Autonomic Neuropathy and probably half of Peripheral Neuropathy symptoms. I never knew there was a connection to those symptoms but like everything, I mostly ignored them (well, as much as one CAN ignore stuff like that). Sure it could be coincidence, but I don't think it is. I'm sure I could ask my EP next month but I'm fairly sure he'll just tell me that's my neuro's jurisdiction.

I like my EP better to be honest. He listens more and I don't feel like he brushes me off. I may not always get what I want at that appointment, but it's never a no. I really hope I don't have to fight hard for this. It's so exhausting just constantly fighting for my health and recognition and even life. Anyway, I'm getting sleepy. Time to rest. <3