Friday, October 29, 2010

Very brief update, then bed

- the halter/event cardiac monitor showed nothing eventful. didn't figure it would. just showed some tachycardia. duh.

- still having the tachycardia, despite the beta blockers, still confirming my beliefs that it's not my heart. i have a doctor appointment on monday, i'm going to ask if i can come off the beta blockers. I don't want the drugs in my system if I don't think they're actually doing me any good.

- i have to switch all my doctors with my new insurance. every single one of them. i cried when i found out. i love my doctor. and continuity of care is important, especially with chronic illnesses. but, alas, i sucked it up and made a lot of phone calls today and got a lot of new doctors. I have a new GP with an appointment set up for a couple weeks from now (to establish myself as a new patient and to feel her out as a doc...because i've had a bad doc and i'm not doing that again). I also had to reschedule my genetics appointment. luckily they (only two in the entire system) had an appointment in december, so although it's still more waiting, I can survive a couple more weeks. I decided not to call a rheumatologist. I'll let my doc refer me to one (there is one in the same office, so I'm hoping since i'm currently a rheumatology patient and they're in the same office, she can get me in there easier than if I call myself, even though I don't need to go back until january).
next week I get to play the file collection game where I call up all my old docs and get all the records sent to all the new docs (actually, i think i'll just have them sent to the new GP and let her disperse them from there as needed so that i don't have to run all over town in HIPAA hell).

- i dislocated 4 of 5 toes in my sleep a few nights ago. not fun at all. i tend to dislocate my little toes (the pinky toes on the end) quite frequently, so those didn't really hurt all that bad, or ya know, at all (it actually scares me how little that hurts...i feel it, but it doesn't really cause pain anymore), but the ones in the middle were a might uncomfortable all bent back and stuck like that. not a great way to wake up.

- could somebody please tell me why my tinnitus has been driving me absolutely bat shit crazy lately?!?!?! I know it's there and i'm aware of it sometimes, but for the last couple weeks, it's been relentless. I can't be in a silent room at all. I've been falling asleep with the ipod on just for some peace (in case you don't know anybody with tinnitus, they generally have a hard time sleeping unless there's a tv or radio going just because the noise in their head will drive them insane before any kind of sleep happens! and that's how the last couple weeks have been for me!).

- i learned today that i have a prolapsed rectum. apparently it's been that way (or been working itself into that position) for a couple months, but i thought it was just rawness or discomfort from BMs and sensitive skin. when i finally had a look, i realized that in fact I had close to 2 cm of colon out of my body. wonderful. i'm going to start using baby wipes permanently (they were just an every now and then thing, but now they're going to be all the time) and ask the doc if some preparation H or barrier ointment might help the discomfort.
way to go EDS for screwing me up just a little bit more!

- work tomorrow. with any luck, it will be like yesterday was. yesterday kinda dragged until the afternoon. then i had to sit with a lady while she got a blood transfusion (watch for reaction and check vitals constantly....she did wonderfully, so mostly i was just checking vitals and had someone nice to talk to for 4 hours). if i could have another day like that (obviously not exactly the same, since we sent her to rehab, so my buddy is gone), that would be wonderful for a saturday. then sunday me and matt are doing halloween movies, bumming around on the couch all day, and spending the whole day in and enjoying the heck out of each other's company (he has to leave for 2 hours for raquetball practice with the boys...but that's not too bad). I'm greatly looking forward to that!!!!!

Off to bed for me! Good night!!!!

Thursday, October 21, 2010

Dizzy....weird kind of dizzy

Went to my family doc. She put me on an event monitor for a few days. It was uneventful. Pretty much what I expected. It showed some tachycardia, but nothing irregular, no funky rhythms. The doc offered to increase my beta blocker to help bring the heart rate down a little more, but then we would have to watch my blood pressure much closer because I'm so low already. I declined the med increase and mentioned that I was getting new compression stockings to help raise my blood pressure.
I'm hoping if I can bring my blood pressure up more, my heart rate my react accordingly. Just because I'm not uber dehydrated doesn't mean that that's not my problem. We brushed off dehydration as the cause for the tachy in the ED because I'm well hydrated. But I wonder if my volume is still low despite how well I drink. So I'm hoping compression stockings will help (as well as drinking until I float away).

Went to the rheumy this week. She wants me to see an endocrinologist. She wonders if I'm having hormone problems as the cause for my tachycardia. Specifically adrenaline. So, we'll see what this guy says.
And in the mean time, she gave me more drugs. Lyrica (on top of the Savella) for pain. She said this should be a bed time med, and it should help me sleep a little better, that the Savella would keep me awake if I took it too late. She also gave me Klonopin for sleep. Which is good because I'm not a big fan of traditional sleep aids...they come with downright scary side effects. Klonopin is a psych med (essentially) and she said would help me relax and help with the tossing and turning and over excited and vivid dreaming I've been having that keeps me awake. And it worked really well. I slept great last night. But it causes dizziness. LIKE WHOA. I checked my eyes, there's no nystagmus (just checking, you never know), and my blood pressure isn't causing this dizziness (and that's usually a different kind of dizzy anyway). I'm hoping it will go away soon, that it's just leftover from the night time dose. But I think it's time to buy a cane. My brain doesn't feel foggy like it normally does when I'm dizzy. I just feel horribly unsteady and unsafe when I'm up, like I have to be holding on to something if I want to make it to point B. So I think a cane for mornings would be helpful. I have no idea how I'm going to break that one to my boyfriend or the rest of my family. I know they're instantly going to tell me to get off the med or just take it earlier so that the side effects wear off in the morning or something. But I don't want to go off this. That was the best night sleep I've had in a while, even if it was drug-induced. And if I take it earlier, I'll have side effects in the evening instead of the morning.
I'm just looking for a good night sleep so I feel better during the day and some safety to go with it, because I'm afraid of falling. I realize I can get hurt when I do that. I fall frequently, but I am going to end up in a lot of trouble one of these days, and if it can be prevented, it should be.

I watched the time when I took it last night, and I'm watching the time now. I'm hoping as my body gets used to it, the time the side effects last will be less. But for now, I have to be careful not to fall. That's my biggest concern.

Actually, my biggest immediate concern is making breakfast. Without incident. Wish me luck.

Saturday, October 16, 2010


Going to the pumpkin patch with my guy and a few of his friends from work today :) :) :) Gonna pick some punkins and get festive!! Can't wait!!!
I'm also taking along a recipe for cupcakes that I saw on Biggest Loser last week. They're Curtis Stone's 100 calorie cupcakes and they're beautiful! I don't need anything in the weight loss area (I need to gain a few), but my guy has a problem when it comes to eating. I think comes from two main problems. One, he used to be a boxer, so he used to eat like one. He stopped boxing about 18 months ago. But didn't give up the eating. Two, he broke his nose several times as a boxer. So he can't breathe. So he can't taste as much. So he inhales food before he even tastes it, therefore eating much more than he really wants (seriously, he'll put in several spoonfuls before he closes his mouth to chew...and I honestly think it's because it's the only way he can taste). So by the time he feels full, he's had way too much. He also tastes extremes because of his lack of taste, so he goes for sweets a lot.
I'm hoping this way, he'll have something tasty but still healthy to munch on when he feels like he needs something. I don't have a problem with him gaining weight as long as he remains healthy, but the fact that it bothers him so much bothers me. He doesn't like the way he looks but doesn't know when to stop. The lack of exercise and the current diet are what's doing him in. And I think he doesn't see that to the same extreme that I do (but with his current job, the exercise is unfortunately not something he can get much of....the diet can be changed though, which may help him, and I would love so much for him to feel better about the way he looks).
So we're going to give these cup cakes a try today. They look amazing! And no artificial junk in them either. No sweeteners or processed garbage. It's all natural and still low cal/low sugar and very healthy. My favorite (actually, these would be great for me too because I need the low sugar option).


So, went to the doctor Thursday to follow up from my ED visit Saturday. She still didn't have my labs from the ED (apparently they're really bad about getting records over in a timely manner...she said they're HIPAA crazy!). But given what I told her, she wasn't sure how much the labs were going to show anyway.
I asked her if she thought it could be EDS related, and she said it's possible, but not her area of expertise, so she wouldn't want to be the one making that call. She told me to go over it with my rheumatologist on Monday when I see her (had a routine follow up scheduled) and she would probably be able to make a better guess at it.
She did decide to keep me on the beta-blockers that the ED doc put me on, just in case they're actually doing more than we realize (and, they're starting to bring my HR down a little bit when I'm at rest, but not really doing anything when I'm up moving during the day, when I need the extra, still thinking this isn't a heart thing, but a dysautonomia thing), but not to increase the dose because my BP runs low as it is; don't need another problem on my hands.
She also decided to send me home with an ambulatory telemetry monitor (Halter/event cardiac monitor). Maybe what's happening when I'm having episodes can be seen on an EKG. So I'll wear this for a few days and see what happens. Mostly it's just obnoxious because it beeps at me a lot and the sensor pads irritate my skin and it has to be charged at least once during the day. *shrug* Could be worse. At least I don't have to be at the hospital to do this. Because that used to be the only way to monitor the heart. Now I just get a kit, attach it all at home, and the info is sent via a special cell phone. Nifty.

Well, it's getting to be late in the morning, so I'm gonna finish getting around here and go see if my boy is awake yet (he'll sleep all day if I let him ;P ).

Pumpkins Pumpkins Pumpkins!!!! :) :) :)

Sunday, October 10, 2010

*flop* I will win! I will win! You cannot beat me!

My body is being a pain in my butt again. Had to go to the ED last night. At that point, it had been over 24 hours that I had been tachycardic, without any relief, not even for a minute or two. So went to get it checked out. Surprise, surprise, the doc found nothing to explain the cause of my discomfort (I don't mean that as a slam to the doc, I mean it as a pointed statement at my body). He ran pretty routine tests for heart and chest anomalies, sending a few to my GP (because they would have taken forever to wait for). I asked if he thought it could be EDS related, he said it's possible, but he wouldn't put it high up on the list (though, who does when they don't know about a disease, right). I don't know if it's EDS/dysautonomia/POTS related, but that would be my best guess. For now.

Either way, I ended up leaving with a new prescription. [insert sarcasm here] Just wonderful. I have a beta blocker. Which may lower my heart rate and make that more comfortable, but it might also lower my BP, which is not high at all (if it goes much lower, I'll have a whole new set of problems to deal with).

I was only given a low dose to begin with, and I took just half a tab tonight to see how I do to start out. I would rather start slow and deal with my heart rate high for a little longer than to have too much of this drug hit me too fast and end up with wicked side effects. And I'm going to call my doc tomorrow, to get the results of the last lab work from the ED and to make an appointment to see her. Hopefully she can see me tomorrow. If not, I'll settle for anytime this week.

Not looking forward to a hospital bill. Yuck. Even with insurance, I'm still going to be out a small chunk of change that I didn't really have.

Dear broken body, quit picking on me! I have a life to live and you're making things very difficult!