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:

http://en.wikipedia.org/wiki/Sinus_tachycardia

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.

A Not-so-good Day Post

I woke up feeling pretty good, all things considered. I was ready to go, even planned to do some cleaning, which for me, is a very big deal.

Except, I guess I stayed on the computer too long (maybe an hour?) and kept ignoring the nagging need to lie down until my heartbeat joined in the internal chorus, threatening to smother me if I didn't listen.
I lay down, but it was going crazy, my feet got cold, my hands, my head even, and my lips tingled along w/my heartbeat. (Even heat from my Thermophore pad wasn't helping. I'd hoped it would not just warm me up, but get more circulation to my upper body so my heart would quit working so hard.)

I'm so annoyed. I had some Celtic Sea Salt and a couple of glasses of water, which helped a little, eventually. But I don't want to spend the day in bed. I made the choice to go on another day, and I wanted to make the most of it.
I'm so tired of all of this I don't even feel the disappointment anymore, it's a strange, numbed, dampened version.

I'd planned out my day but it was too much to begin with and now it seems pointless to try. I'm tempted to go at the kitchen floor anyway, give my heart something to flip out about. I really want to lie down though...

Mystery Diagnosis Dysautonomia Episode: The Woman Who Kept Falling Down

Talked to my brother tonight, and he told me he saw this episode of Mystery Diagnosis on the Discovery Channel over the weekend, about this lady with neurological disorder, and her symptoms sounded like mine.

(Ironically, I was lying down in my car in a store parking lot at the time, because I've been sick the past week or so, and just running a couple of errands was threatening to set off a POTS flare, was sweating, weak, shaky, and seeing spots, and having slightly funky heart rhythms.)

I learned something new from his telling me about the show, actually. Funny, because just this weekend when it was acting up, I was telling my Dad how I felt like someone had their finger on my carotid artery. My brother started saying how the woman on the show said she "felt like her neck..."and I interrupted him and said "had a finger on her carotid artery!?" And he said

"Yeah!"

I hadn't known that was a common thing until then!

So anyways, that was cool to get to talk with him about that. Now if only I could be as lucky as that lady and find a doctor who will help me get it under control.

Actually, I may have...I went to see an old doctor of mine, a really fabulous man who is a holistic doctor with an M.D.. (The only reason I haven't seen him continually is that I haven't been able to afford long-term treatment with him.)
He thinks the key lies in my adrenals, and I tend to agree...I had another holistic practitioner who helped me at my sickest treat me for that too...So maybe in me that's what triggers it. The adrenal is a very tricky thing, because for some reason most of the medical community doesn't believe in adrenal dysfunction other than complete failure (Addison's Disease.)

He had me do a Saliva Cortisol test, and also ran another Thyroid panel, since my T4 came up low. (It's my understanding that adrenal problems would in turn affect my Thyroid, so...)

I have an phone appointment with him tomorrow afternoon to go over the results, so I'm keeping my fingers crossed we'll have some confirmation of all that, as well as tangible PROOF for the SSA that I am as sick as I say I am. So wish me luck!

Here's the show schedule for the Episode of Mystery Diagnosis. It's on tonight (2am here in the Pacific Time Zone) as well as again on October 3rd. Spread the word!

Discovery Health :: TV Listings :: Mystery Diagnosis

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Fun with weird symptoms...

Well, I guess they would actually fit into the broad spectrum of Dysautonomia. I haven't checked my blood pressure today, mostly because I didn't want to see how fast my heartrate was, but I'd be willing to bet it's pretty darn low, and dropping steadily the more I stay upright.

I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.

But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.

This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.

I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.

This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.

It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.

I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...

Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!

What a WEEK!

And thank goodness it's over! Even though I've been sick for several weeks now, this past week was the roughest yet. Antibiotics for my kidney infection weren't working, so I had to go get more. At that point, I was overheating, having hot flashes and cold sweats, and feeling nauseous. Somehow, I got myself to the doctor's and even got in a good mood. It was weird. I honestly think after spending so much time home in bed sick and not seeing anyone but my Dad, and briefly, my brain was just craving some human interaction like mad!

I guess that's part of why this whole "sicker than usual" spell has been so tough. Prior to it, I had at least 3 doctor's appointments a week. (No, I'm not some kind of crazy, it was physical therapy, or my allergist, or a therapist, lol. Just trying to treat as much as was treatable any way I could. Physical Therapy did wonders btw, I'll have to talk about that!) So, pathetic as it may sound, at least I got out and got to talk to real LIVE people at least a couple of times a week and feel like part of the world. I used to be okay with sitting at home alone, but it's just so great to be around people, get distracted, joke, laugh...But lately, I've had to give up on that. First because of financial issues, I had to cut back to bare minimum appointments, and of those, I ended up asking to be billed for most of the co-pays. I'm in such a hole!
Then, I've actually, without a doubt, been far too sick to do much. I kept trying, and trying to do stuff, because I'm stubborn, pig-headed, and that whole guilt thing, but after a few weeks of being sick...I could almost say it broke me a bit...but on the other hand, there was some of that whole "if you can't beat 'em, join 'em" thing going on.

I just had to come to the realization that, okay, I'm really, really sick right now. Nothing else to do but face it, especially when it's so bad I was starting to avoid even checking my e-mail because being upright was making me feel so ill.

Ah, yes. Dysautonomia. My blood pressure was no lower than it has been since I started on the Beta Blocker, but I could tell it wasn't staying up. I was having headrushes galore, to the point where I was starting to get headaches again, and being upright, sitting at the computer was making me feel just plain ill. It's almost like this anxious feeling, it seems like it's hard to breathe, the muscles in my upper body get completely tensed up, and I just feel sick. And an overwhelming urge to lie down.
It got to the point where I was getting all shaky, like a few weeks back, so I decided I'd better listen and keep lying down, cuz that stuff unnerves me.

PLUS, the UTI was getting so bad, my back was killing me, all the way around actually, and my stomach was swollen enough so it looked like I was pregnant, though I was hardly eating. (Eating made the pain worse, kidney infections seem to screw up one's digestion; at least with me they do...)

I started to get better after a day or so of antibiotics, but then the Dysauntomia flared back up, complete with a resting heartrate of 130. It was so bad I felt out of breath, like I'd been running. I figured, I've gone up to 150 on the eliptical trainer before (back when I was well enough to do that for 20 minutes or so) and there's a hospital less than a mile away, so if it got worse than that, I'd go.
(I think it may have partly been because I ran out of my Beta Blocker the night before, plus, in retrospect, I now see that infections always trigger the Dysautonomia symptoms.)

So all that was fun. I medicated myself any way I could. I had some Celtic Sea Salt, extra pouches of Emergen-C, and vitamins/supplements galore.

I've come (back) to an old conclusion. I need to help my adrenals. Yes, I may have chronic enterovirus infections, but they don't usually make me this sick. And in the past week, I've had different types of infections...so I knew it was my immune system that was having issues. Plus, the Dysauntomia always gets better when I treat my adrenals. I've had a couple of different holistic doctors tell me I was having adrenal troubles, and I KNOW one supplement for them that was key in getting me out of a Dysautonomia flare that was the worse ever (after my last "real" job).

So even if the virus is the cause of everything, treating my obviously exhausted adrenals SHOULD help right? Adrenals regulate your immune system, your digestion, blood sugar, BLOOD PRESSURE, electrolytes, stress response...all of which I've been having trouble with...I am happy to report, that I was pleasantly surprised to find that w/the purchase of some Whey Protein and a box of Emergen-C, I actually have many of the supplements that can help support my adrenals already! (At least for a couple more days...)

So I'm going to work on that, but most of all, just relaxing and accepting that I need to rest, and it's ok to be lazy. Sheesh, that Catholic guilt really does NEVER leave you! Hoping to start some chair yoga tomorrow. Must find my Zen, wherever or however my life is destined to be...