Monday, December 19, 2011

Sinus Tachycardia & Stuff.

I realized earlier tonight, that although I believed it to be an evil term that doctors have used to dismiss my racing heartrate, I really had no idea what Sinus Tachycardia really meant! So, being me, I had to look it up. (And also being me, I can't understand how I hadn't already? Maybe I did, but in the days when my memory was REALLY bad?) As usual, Wikipedia delivered. (Remember the days when it was actually considered quite an iffy source?)It even mentions POTS in relation to it! So here that is:

Nothing much new. My heart isn't pounding as badly now that I'm back on the Beta Blocker, except for when right after I took it today, but I'm guessing that's because the Mestinon was chopped in half & released into my system more quickly then the unbroken Metoprolol pills. I did have a lot of near syncope episodes though, even after the Metoprolol should have taken effect, I think. Definitely noticed an increase in those since I started the Mestinon, although it could just be because it's close to the end of my cycle. Nasty ones, too. If they were to keep up, I think I'd have some of those nasty headaches in my future.

Well. This is going well! I was afraid it wasn't a good time to post, seeing as how I was feeling pretty cranky over not being the slightest bit sleepy. And a little bummed out that my stomach's out of sorts, because I stuffed myself with Spanokopitas a little bit ago. I tried to resist the urge to eat, but I didn't manage. I even had two, yes TWO cups of tea to try and turn off the anxiety, or quell my sweet tooth, or just put me to sleep, but nope! Well, I really didn't eat what I would call a proper dinner...I really can't decide which it was, maybe genuine hunger and then topped off with anxiety that makes me want to stuff myself silly.

Nothing much new. Well, I am doing a lot better with the holidays this year! Maybe because I've been so busy, maybe the peace of having the place to myself, maybe I'm just plain used to it not being a big deal and being broke at this point? I am about $200 in the hole this month, so that sucks, but I'm not all that worried about it. The only difference it really makes is, I feel even less inclined to make the effort to drive to L.A. for Christmas with my Mom & brother. And yes, I'm still annoyed that we can't have it here. I started decorating very nicely; managed to find where some of the decorations were stored.

The foster kitties are quite nice to have around. (Except when they start making too much noise at night, ahem, kitties, you boys had all day to play, to bed!) My allergies aren't doing nearly as bad as I'd feared.

So nice to have time to rest and not forcing myself through the motions like a zombie, trying to get to all my appointments. Last week was light, and this weekend I was just plain lazy, although I did find myself sending a fax to my attorney with some new medical records I got from a previous Primary Care Physician (For free! Yay!) as well as some input from my brother about my health and how it affects my day to day life, and Foreclosure notices for this place. Yup, they're all trying to give me the boot now. I won't budge till I have to, hopefully I'll get till Spring or Summer, so if I have to sleep in my car, I won't be freezing. I guess I'd better start finding out more about transitional housing eventually. I know there's something like that at the place where I go to the clinic, a mission, but not sure how that all works. But then, who knows what the future will bring, I'll cross that bridge when I get a little closer to it. Does that sound a bit Zen? Maybe so, I don't know why, but lately I feel quite Zen. Except when I wake up super-anxious in the mornings, but as far as the overall picture...OHHHHHMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM.

Monday, December 12, 2011

Mestinon update

A few days on Mestinon now. BP is up actually, but heartrate is too. Somehow, even 144 didn't seem as bad as 120 usually feels. Maybe heart is pumping faster, but w/less effort due to Mestinon's effect on muscles? Face has color back, but toes and fingers feel kinda swollen. A little breathless, too, but I think it's the heartrate. Ran out of Metoprolol, so getting back on it may take care of that.

Saturday, December 10, 2011

Disautonomia (Dysautonomia in Spanish!)

I am SO excited. I just found these amazing links about Dysautonomia in Spanish! They are actually better than many links & info I've found in English, they even go as far as to describe how it affects one's social life, because we can seem fine at a party and then once we're exhausted, we're kaput! So if you're bilingual or si habla espanol, share/compartanlo, por favor!

Disautonomia (This one has pics at the bottom of ways to push blood up or keep it from pooling in one's extremities, the last one kinda demonstrates how I've managed to do some of the dishes lately, lol!)

Here's a second one:

Now if my family members and Spanish speaking friends would just read this, lol. Maybe then they'd stop assuming I'm lazy, crazy, anti-social, or a pill-popper. (It's like seriously? Did you not know me at all before I got sick?) Okay, well maybe a little crazy, but aren't we all? (I didn't do well on a trip to South America to visit family, which as one of the articles points out, makes sense due to the elevation making things worse.) Some of my friends on the other hand, decided not to come to my birthday party, which I suspect is because I've missed so many of their parties the last couple of years that I've been sicker, but then, they've also made it clear that they don't believe I'm sick so...Ah well, what are you gonna do? Just keep on keepin' on...and make the best of the little things. Even if they are little tiny things. :)

Friday, December 9, 2011

New Cardiologist

I saw my new Cardiologist last week. When I left, I felt so lucky! What are the odds that I would find a Cardiologist on the county health plan who has experience treating POTS? Especially when the last one didn't even want to try even though he did acknowledge something was wrong.

So yes. New Cardiologist. She's pretty young, maybe even younger than I, but very professional. She surprised me, having the Medical Assistant take my blood pressure standing, sitting, and lying, before she even came in. Had a quick EKG, which was fine. She then gave her my records, which just took her a second to read (that always surprises me, ha!) and we went over everything. (Apparently she had my records sent from the clinic in her computer already! LOVE computerized offices!) She agreed with me the Cardiologist who did the Tilt Table Test was off in his interpretation and that it WAS in fact positive. (Victory! Ha-ha.)

Anyways, so she put me on Mestinon (what a relief, I'd half forgotten, but that was the drug I was looking at that sounded best, better known for treating Myasthenia Gravis; I'd been afraid she'd want me to take steroid-type medications. She wants me to get compression stockings, which she said should help the neuropathy in my feet and help keep blood from pooling. She wants me to stick to my vegetarian diet, as she says that's the best for POTS w/gastro symptoms, eating meat would likely make it worse (Yay! I wanted to start eating meat again, but I just couldn't!) Slow, graded exercise, ideally recumbent bike starting at 10 minutes, which was my plan, but she said that without knowing that, and a couple of other minor things. (Staying on my high salt diet, drinking at least 64 ozs of water daily, magnesium to help with symptoms during PMS...) She believes that the type of POTS I have is only temporary, and that with some work I can improve in a year or so. Which would be awesome, but not going to get my hopes up too much...

So started on the Mestinon last night...Not sure of any changes yet, except that my lips are a bit tingly, and my face is a bit flushed, which I'd read could be a side effect, but I kind of like, cuz I've been a bit pale lately and every blush I use seems to make me break out, so now I don't have to decide between blush or breakouts, haha. Now if it'll just help with that muscle weakness I've been feeling lately (can barely hold myself up sometimes!) and help my blood pressure stay up & heart rate normal, wow, that would be amazing. Stockings, I have to see if I can get those covered, although I found some online for under $20, I'm already going without a ton of stuff I need, Rx's, supplements, car registration...but hopefully I'll find the cash for that soon. So we shall see how it goes!

Thursday, December 8, 2011

A Day OFF!

Finally, tomorrow, no appointments, dinners, or birthdays. I've been dying to write for over a week now but was just too tired to summon the will. Seems like every second I'm not doing something I'm trying to rest...but as I was trying to explain to my Physical Therapist today, I need a LOT of rest! Once I get exhausted like this, it takes 2-3 days of doing nothing, and I mean pretty much nothing, to get back to my "normal". I have to say, I almost didn't go today, because I knew she was going to get on my nerves, little spitfire dynamo that she is, and I was so tired, I just wanted to go back to bed or at least RELAX. And sure enough, she has to argue with me about every little thing. I tell her I need 9 hours of sleep a night to be at my best, she says no, that's too much 7-8 is enough. (Nevermind that I only got 5!) I tell her my cardiologist agreed with me that exercise is okay, but she wants me doing no more than 10 minutes on the recumbent bike to start, and Ms. PT wants me to walk & goes on a tirade about that. (Fresh air, blah, blah, whatever,I agree but I have an anxiety disorder so I hate walking around by myself in a place where everyone stares at me; just what I need, more stress?!) I tell her hopefully next time I come I will not be so tired, because I can't focus or coordinate the exercises she's teaching me and she says, no, I want you to come when you're tired and at your worst.(!?! I'd get it if I was in pain, but I'm talking when I'm so exhausted I can barely hold myself up and I can't think straight, and therefore can't learn the exercises properly, which makes me less likely to do them at home.) And this after she's talked for half an hour! Oy,oy-oy.

When she finally tried to tell me that I felt like I needed to sleep because I was depressed (which I totally have NOT been lately! Upset, frustrated, overwhelmed,at moments, maybe a day or so, but depressed, no.) I finally had a little tirade of my own. Ha, writing this I'm really fully realizing the nerve of her trying to tell me I don't know my own body! Yes, I know my health could be managed better, but I've been working my butt off on it lately, and if I'm excruciatingly tired after days of not being able to rest properly or even get enough sleep, it's because I need to rest, my body, and my psyche! It takes a lot of will power to keep going when you're feeling that bad and it wears you out mentally, too! Yes, I know feeling tired all the time CAN BE a symptom of depression, but I also know all too well what depression feels like. (And I always got out of bed anyhow.)

Oh my, this is turning into a rant, isn't it? Well, long story short, I ended up cutting her short a bit after I'd explained to her 3-4 times that I understood PT required my effort to work, that I'd put so much thought into whether I should be even trying it right now with all I have going on that I even spoke to my therapist about it yesterday, and assured her that because I finally have a break from 2-3 appointments a week (sometimes a day!) and all kinds of other craziness, I would now be able to focus my full attention and make the effort and reap the benefits. The reason is, that she kept trying to tell me about some guy my age who had been in an accident but did his exercises and saw rapid improvement despite having to work 2 full-time jobs...which is great for him, and yes, I know, PT can do wonders if you work at it...that's why I'm going, and why I'm telling her I plan to start taking advantage of it. See, anyone who's not sick reading this will probably do like my aunt, say I'm exaggerating, but being this chronically ill IS like working two jobs! And yes, I HAVE worked two jobs before, so I do know what that is really like. But just getting from day to day, taking care of my basic needs, stuff that most people take for granted, for me, that's as exhausting as a full-time job. Then add the marathon of appointments, followup phone calls with lawyers, doctors, faxes sent & received, social services issues, more faxes sent & received, prescriptions to pick up, getting records together that pertain to each specialist, figuring out how to get money for gas to get everywhere, how to stretch my budget, plan my days, micromanage myself so I can keep on doing it even if my brain fails me (thank goodness for electronic calendars and lists!) and managing all my symptoms (nausea, upset stomach, tachycardia, low bp, anemia, numb/tingly and cold extremities, near-blackouts, spells of being freezing & not being able to warm up, night sweats, allergies, pain, weakness, ovarian cysts twisting, irritated bladder, need I go on?)Add in some holidays, new foster kitties & making the house presentable, and mine and my brother's birthday (I had to get up early on mine to sell a piece of furniture I'd put on Craigslist, and then spent the afternoon trying to convince myself to go to my brother's to celebrate BOTH our birthdays and being unsuccessful until I finally gave in and took a nap...and went.)Now try stuffing random things you have to do everyday anyway in all the little cracks of free time...Like I finally told Ms. PT, I'm so exhausted from all that I've had going on and because my body is asking me for rest, my mind is so tired of pushing it, that if I push myself any harder I'll be on the verge of a nervous breakdown, lol. I then reminded her that I do have chronic infections taxing my body and am coming off medications to manage them, too...And then she tells me I need to stop thinking of myself as sick. Which I understand, am already aware of, and I actually am doing better at, but when I'm at health appointment having to explain myself it kind of does come into play... (I mean, seriously, if I sat around thinking about how sick I am, would I really have even gotten through the last few weeks?) Although it's been exhausting, and I'm glad I get a much needed break, it's been wonderful in a way, to feel like I'm living again, doing all this stuff, so despite the fact that I've been dealing with medical records & Disability cases & specialists galore, I've mostly been busy just time to dwell on the bad or cry about the world collapsing around me, or people being mean, or anything, really. If I did, I simply wouldn't make it. Even when I'm busy keeping my symptoms in check, I hardly notice, it's become almost automatic. If I'm nauseous, I take some ginger. And go about my business. If it doesn't go away when I realize it's been awhile, I take some more, or try another remedy. Then continue. If I'm feeling weak, tired, cold, in too much pain, or my back or feet are telling me, I rest. Then get up & continue. I don't sit around thinking Oh no, OMG this sucks, I hate my life, I'm so nauseous/sick/blah. I mean, I probably actually took it to an extreme, which is why I stopped trying to get help, so I could think about it less, lol, and why I'm having to see all these docs now as part of taking care of business. (Well, that and it's really damn complicated and exhausting, especially when you have no insurance and have to beg for every little bit of help.) Now that may be hard to believe after reading this rant, that I don't focus on my illness, but...well, this is my place for that.

Alright. No more dwelling on this negative stuff. Whatever. I'll do my PT exercises from now on, I shall get my rest & be ready to go, and if Ms. PT tries to lecture me again, I will cut her off again, cuz I'm over it. I know I'm doing my best, and also that my best will be better next week. My next post (oops, did I say that before?) is about the awesome cardiologist I found who can and is actually going to try and treat my POTS! How's that for an awesome birthday gift? I'm so grateful that this little marathon of doctor's visits has been fruitful, so very grateful for all of my docs, and yes, even Ms. PT, because I know she means well, that tiny little dynamo.