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!!!!

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.

Pumpkins!!!!

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 help....so, 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!!!! :) :) :)

*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!

Sleepy time, but first....

So that obnoxious pain in my chest that I've had for years and years and years that I could never figure out, that doctors could never figure out, that I was told I'm just going to have to live with because there was absolutely nothing wrong with me....? Well, I'm quite certain that pain is from subluxing/dislocating ribs. I was in bed when it happened a couple days ago, turned wrong and PAIN. Grabbed my chest (instinct, hand goes to what hurts) and wouldn't you know it, there's a huge bump in my chest next to my sternum. It's a rib. Sticking up. That wasn't sticking up before. After forcing myself to return to a naturally straight position (that's what I learned to do, even if I could never figure out what was wrong or why it hurt in the first place, I knew that staying contracted toward the pain wouldn't help for long), I stretched slowly, massaged and pressed on my chest a little, stretched and flexed a bit more, and eventually it went away (with some dull aching as an after effect, which is normal). So, there we have it. I'm pretty certain that's what's been going on. And I have every intention of bringing that up with the rheumatologist in a couple weeks when I see her (not that there's much she can do about it, but hell, maybe we can get creative).

I think the TED hose are doing something in the way of helping me. I skipped wearing them to work one day last week because I only have one pair and they needed washing (you have to hand wash them, and let them air dry, takes forever and they weren't dry by the time I had to go to work). Within 2 hours at work, my heart rate was ridiculously high and I felt horrible. I had to down close to 2 liters of water (with some salt for retention) in an hour to make my blood pressure come back up enough to make it chill.
And then halfway through the day, my legs were just achy. They're always achy, but this time it was the muscles aching, and in a way they hadn't in a while. It could have just been a coincidence that I was feeling bad that day. But I'm not willing to be testing that theory out all that much. I didn't wear the stockings, I felt like junk all day. Seems logical.
I still want a pair of tighter ones though. The thigh-highs that I have don't stay up while I'm at work. The force from walking all day and friction from my pants rubbing on them makes them scoot down to my knees. Which is worthless. I would rather have the thigh-highs, but not if they're not going to stay put. I ended up getting a pair of regular knee-highs out of the supply closet and switching them halfway through the day.

Tests for my tummy are in a week. Hopefully they can find something this time, or determine better what they can do to help me. Today was the first day of "prep". No meds for a week, to really build up all that nasty stomach acid. Ugh. Today wasn't too bad. Lots of hiccups and burps, and some mild pain later in the day. But I know it'll get worse the longer I go. The day before the test will be pretty bad. Not looking forward to that. But at least I know I don't have to work that day this time around. I have all three days off for the test.

So many tests and doctors and YUCK!! I hate being sick. I hate being a scheduling pain in the ass at work. I hate feeling like a disaster and like I need to explain myself. Today at work was not fun when I had to work around all my appointments that were scheduled. And there was nothing I could do because I'm not about to reschedule them and I don't really want to have to explain to everyone that I have EDS (and fibro) and what it is and that yes I can work but that yes I really am sick and need to be seeing all these doctors. Oy. What a mess.

But at any rate. I think I'm going to investigate the yummy smell coming from the kitchen (I don't think I'll eat, I just want to know what it is ;P ) and then lay down with my book. I'm tired, I could definitely turn in early tonight, but I would really like to carry on with this book!!! So good!!!

Let's play catch up, shall we

Been several days since I got the TEDs. Don't really know that I see any improvements or changes to be spoken of. Yesterday or the day before, after I took them off, my right knee hurt. As in, it didn't until they were off. I'm not sure if that was a coincidence or not, given anything can hurt in the blink of an eye with me. But otherwise, I haven't noticed anything major. But, I'm going to keep wearing them daily, that way when I talk to the doc about it, I'll at least have steady info to give her.

The Savella I've been taking for fibromyalgia is doing nothing so far. Well, nothing for pain management. It is, however, screwing up some kind of thermoregulation mechanism in my body to the point I'm about ready to pull my hair out. I can be hot, standing out in the sun, a warm light breeze comes by and I'm covered from head to toe with goosebumps and shivering for no reason. It also seems to make my legs feel weird in the same respect, I have goosebumps all the time if anything touches them or if there's any kind of temperature change (even a difference in sitting and walking). It's really obnoxious.

I've had two of 3 days of orientation/training for the new job. General orientation and clinical partner training both went pretty well except for the part where we had to sit all day in straight hard chairs that were too tall for me and pushed against my hips in an uncomfortable way. The first day, I could hardly walk by the time I left; I promptly came home and slept for two hours, and was still hurting and did pretty much nothing the entire next day (luckily, didn't have to be anywhere). The second day, I took a pillow, and moved around more. Still achy, and couldn't get comfortable. Finally gave in and took a nap just to forget about the discomfort for about 40 minutes and it helped greatly.
Tomorrow, I'm taking the pillow again. But there won't be much getting up and moving around because I'll be in front of a computer all day, instead of in lectures/videos. So that part's gonna suck. But then I'll have Friday off again to relax a little.

Then Friday afternoon, when Matt gets off work, we're driving home to see the grand opening of my mom's business!!!

The tachycardia I've been having the last couple weeks is really concerning to me. Every day I wonder more and more how long I can function with this much discomfort. I think about trying to get through nursing school and nursing clinicals and how I would possibly be able to keep up. I don't think I would. That thought scares me. I feel like I would be disappointing everyone. I've been holding back the pain and discomfort and everything I've been going through for so long that by the time I tell people how bad it is, I feel like they wouldn't believe me. Because I don't look sick and it's all come on too fast, right?
I just...I don't like letting people down. And I don't like letting myself down. I really do want to finish school. And I feel like sometimes I'm giving up too easily. But other times I wonder if I am. Am I really being fair to myself to keep pushing it and having less quality of life if I'm always in pain, and not focused because the tachycardia keeps getting worse?
I know life won't come to a halt while I try to figure this out, and that's fine, but I wish people would stop pressuring me while I thought about it in the meantime. The choices I make are hard. And I wish things were different, but they're not, so I have to think about the future, not just today, no matter how much I wish that were different.

I worry sometimes that Matt got a bad deal. That the girl he fell in love with isn't the girl he got stuck with. I know he could leave if he wanted to, and I tried telling him that once. But even though he loves me, and I know he does, I still feel like it's not fair to him. I'm not the same girl. Just in the last year I've changed a lot. I'm not as energized and I don't like going out to do things or going out late with friends and standing around talking in an uncomfortable room. Because I just don't have the energy for those things. I love to go out and do things with him. But I like planning ahead, that way I can plan ahead for my body too. Having a friend call at 8pm on Friday night when we're on the couch watching TV and ask if we want to grab a drink might seem like nothing. Except that I've already tackled a whole day. I don't have the energy left for a few more hours out with people. But how do I say no? Or even when I head over for dinner and he says we're going to meet some friends somewhere instead. That takes more energy. But....I hate having to tell him no. Because he doesn't get to see his friends much and he likes to socialize, and he always feels like he hasn't seen them enough, and he's a very social guy so he likes to go out and when he doesn't get to do that enough he feels couped up. It's hard to deny that.
It's hard to tell him that I feel like my body is going to implode and everything hurts and I might cry at the very thought of going out.
Or, even if I do have a little energy left, it'll all be wasted quickly, and I won't enjoy myself as much as if we had done something more low-key.
I hate having to plan life, but it helps so much now. And I don't like having to tell him that he has to do that just because of me now. It hardly seems fair.

....I think I should be done purging. That was unintentional. I think I'll go write fic while my hands are feeling good. Then early to bed tonight for an early day tomorrow.

Real quick before bed

It's closing in on getting late. I find it very hilarious that 10pm is late. But considering I didn't sleep much last night (never do), and gave up and got up at 4:30 this morning, I'm just about wiped. So we'll keep this short.

My compression (TED) stockings came early this morning. I ordered non-prescription ones online a couple days ago. I was hoping to try them out to see if the light pressure would help stabilize my joints enough that I could avoid braces/splints. On good days, I don't wear them anyway because they're so uncomfortable and cumbersome. But on bad days when I need them, I hate wearing them. So I'm wondering if this will be an alternative to the good days.
I've also been having trouble with my blood pressure/heart rate. I don't know if I'm starting to develop POTS secondary to EDS, but the last few weeks have been pretty ridiculous. And I've had bouts of severe tachycardia for the last year. A couple dozen unexplained episodes where I jump up to 130 or higher for no reason at all. I had a full cardiac workup in February and nothing was found. We chalked it up to medications/diet/stress. But I don't think that's what it was.
Now, I've been having daily spells of high resting heart rate (90-110) with no discernable cause. I've always had good heart rate in the past. My blood pressure has always been low though because of my size (5'3 and always under 120 lbs means low BP). Since I've been losing weight lately too, I think that might be contributing. But the tachycardia is very uncomfortable. It makes it hard to focus, makes me nauseated, makes me feel faint...all the fun things tachycardia should do.
Non-prescription compression stockings aren't very strong, but it's a start. I figure I'll try these for a couple weeks and see what happens. I may also ask my doc about a stronger pair to see if that helps any.
The good news is that they weren't as uncomfortable as I was expecting. And maybe they'll help prevent the couple of varicose veins that are forming on the backs of my legs. I'm too young to be getting those already.

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Did lots of running around today. After much hassle, I got the doctor's note I needed for my new job. I went to my rheumatologists office and picked it up and hand delivered it to the HR department to make sure they got it. Because otherwise, I was looking at not starting for another 6-8 weeks. And that would suck considerably. So now I'm set. I have general orientation bright and early tomorrow morning. All day. Not the most ideal way to spend a Saturday. But hey, I'm used to not having my weekends anyway ;P

Got to see my guy for a little while tonight. It's hard not getting to see him as much now that school's started. But hopefully we'll get to spend more time together on weekends. He was very whiny when I had to leave though. Because it's Friday night, the night he actually gets to stay up later (even though he was falling asleep on the couch) and I had to leave because I had to start getting around for bed. It sucked. But it is what it is. As long as we're seeing each other at least once a week, we'll survive. Hopefully once I get a schedule and get into the swing of this new job, we can see each other a little more again. I miss him.
And I reminded him that once we're married, we'll be in the same house and we can see each other every day. Even if it's just to sit in the same room while we work :\ I still take this over the long distance crap any day.

Well, I need to hit the hay. Morning is coming whether I sleep or not. And I'd really like to sleep. Night all!