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.

Tuesday, November 29, 2011


I read this article and thought, "Yay! It's not just me!" :)

CHRONICLES OF FIBROMYALGIA: The Carpet Cleaners: I have been amazingly forthright with you all about my complete lack of housekeeping skills. Or more specifically, my complete lack of an in...

Monday, November 28, 2011

Holidays, Cats & Cat's Claw

Well. Finally finished off the last of the Thanksgiving leftovers today! Just in time to start taking advantage of all my birthday club coupons that began arriving in my e-mail over the weekend! Uh-oh. And I was doing so well with eating healthy and sparingly! Oh well, birthdays only come once a year, and it's not like I'll be getting out much to get stuffed with holiday goodies.

My stomach, thankfully, listened to me and behaved, at least for a couple of days. I think what's helped is that I've started taking a Cat's Claw supplement. Not one of the ones I had recommended to me, way too expensive, at least at the doses recommended on the bottles, just a generic one my Mom got me at the health store for under ten bucks. Their store brand is usually pretty good, so we figured, why not? I think I started out at too high a dose, but hard to say, because that's the dose I was taking at first, then I backed off/forgot to take it for a day and got worse, so I chose to knock it down a capsule, and so far so good, and thank goodness, because the acid reflux and nausea especially, were getting awful. (Ginger wasn't helping, nothing was; and stomach pain to boot.) So the tapering off the anti-viral is going way, way better than I'd expected. I'm down to half a tab daily.

Tomorrow, it's off to the cardiologist. Fingers crossed that she can do something to help me. I had the luxury of choosing from an entire group of cardiologists at this medical group, and her bio mentioned orthostatic hypotension and tachycardia. Hopefully, with her support, I can get them to allow the autonomic testing.

I am SO glad I've had a little bit of a break from all the crazy doctor appointments this past week. This week doesn't seem so bad, especially since two of my 3 appointments are close by. The follow-up with my PCP is the only far one, but that's okay.

Physical therapy has been interesting, though I've only gone once so far besides the evaluation. The Therapist continues to impress me. Although I still think she may be a bit gung-ho in wanting me to start with 20 minutes of cardio, pending the cardiologist's approval. The exercises she gave me were super-easy...except they're not for me, and every time I do them it seems to set off the pain. It really sucks not going more than once a week, especially at the start, because it's hard to get the hang of doing them right. (I'm terribly uncoordinated, couldn't memorize a dance routine to save my life.) But I think she said that after the cardiologist's input, I can ramp it up to two. She also said that my muscle weakness was equivalent to an 80 year old's (so there, relative who practically called me a liar for saying that I feel like an 80 year old sometimes) but that she has seen someone my age that weak maybe weaker, before, once.

So, all is basically well for now. I've volunteered to foster a couple of cats, I just couldn't take the solitude anymore, and I made the mistake of watching one too many cute cat videos, haha. I wasn't keen on having to clean litter again, but I'll manage. They are young & playful and will be fun to have around I think. I figure, my allergies haven't completely gone away since mine's been gone, so hopefully it won't be that much worse. So I'm excited! I'm not having company over on my birthday after all, I hadn't realized it was my brother's 30th birthday, so I had to forgive him for scheduling his birthday celebrations on my actual birthday, but I'm still getting the place cleaned, a great birthday present to myself! I can't afford it, but I don't care! Like my sometimes illogical mother is fond of saying when she's going to spend money on something she can't afford, "I deserve it!". Well I do, right? Okay, well I'd better go to sleep before I start thinking that I idea through. It's not like I'll have enough money for everything I need anyhow, no matter what I spend it on I'll be short. Oy. Story of my life! Okay, well now I'm going to go meditate on abundance!

Thursday, November 24, 2011

Happy Thanksgiving - Things to be grateful for

Well. I got started last night, after realizing I'd be tired half the day today and probably wear myself out if I tried to do it all. Somehow, I managed to get my Pumpkin Cheesecake in the oven and cooling, my stuffing done (via microwave, to minimize on dishes, lol) my marinade ready, and now I just have to cook the "Turky" (Quorn, a vegetarian brand) and make my mashed potatoes & gravy :) Oh, and microwave some veggies & open the cranberry sauce! Woo!

I'm really glad I did it that way, because for some reason I only got five hours sleep, and have woken up with a grumbly tummy. Not hungry grumbly, more like infection is having a party in here grumbly. Not surprising I guess, since I spent most of yesterday fighting off nausea and general stomach yuckiness. Oh well, I will whip out my arsenal and make it settle down by dinner time, it will not keep me away from my Thanksgiving Dinner darnit!

So what am I grateful for this year? A lot surprisingly. For one, I'm thankful to be in the comfort of my own home for once, and to have my entire arsenal for stomach upset, pain, etc. at my disposal, and to not have to wear myself out more packing & driving & trying to cook in a foreign kitchen and find a place to lie down or worry about what anyone thinks. It's definitely enough to make up for spending it alone, surprisingly. It's been a tumultuous few months, and a marathon of doctor's appointments lately, so I'm grateful that's over & I made it through!

I'm grateful to have a place to enjoy the comforts of home in, because I know everyone is not so lucky, and I don't know what the future will bring.

I'm grateful that I'm not having Tachycardia today so far, and haven't had any bad, bad attacks lately, with the breathlessness & chest crushing or neck coking sensations, or any of that especially nasty stuff.

I'm grateful that I managed to get a nice little Thanksgiving meal together for myself, sweet potato casserole-less, but I've got PUMPKIN CHEESECAKE, so that's okay!

I'm grateful that I'm getting sleepy and after I write this I am free to go back to sleep and stay that way all day if I darn well please.

I'm grateful for the doctors that do their best to help me manage my conditions, and to live in this country with as many resources we have for those in need, because I know it could be much worse!

I"m grateful for my recliner and the gorgeous view out the window from it, and for free cable TV, and cheap Internet, and all the gadgets it allows me to use! (Ha! Couldn't pay my cell phone bill this month, but imagine my delight to find out the Wifi still connects me to all my apps on it so I can periodically check things even when the pain of being on a computer is too much and keep myself entertained and connected to the outside world!

I am really grateful I live in California and not some cold snowy place that would make my body ache, and that I have a temperature-controlled environment to keep my body thermostat issues at bay.

I'm grateful for my car, even though it's giving me signs it's ready for some work, and for the guys who pushed it to the gas station the other day when I ran out of gas because the gas light never went on.

I'm grateful for all the special people in my life, loved ones, near & far, and the memories we share.

I'm grateful for the new people I have met lately who have brought a little joy & normalcy back into my life.

I'm grateful that I've found so many things to be grateful for, because I wasn't feeling it just a few days ago!

Last but not least, I am grateful for this bed I'm about to sink back into and hopefully get some delicious sleep in!

Happy Thanksgiving to you all, and if you have POTS, try not to overeat, and if you do, may you have a comfy place to rest and minimal discomfort!

Tuesday, November 22, 2011

Chronic Fatigue Syndrome: The Silent Suffering » White House Chronicle

Good article. Spread it around !

Chronic Fatigue Syndrome: The Silent Suffering » White House Chronicle

How to Ease the Pain of Isolation During the Holidays | Psychology Today

How to Ease the Pain of Isolation During the Holidays | Psychology Today

Totally feel this article! I've done the crying thing myself...One time when my heart was acting up, & I couldn't drink, everyone was dancing, and it was one of the few times in years where it seemed just like old times with my family, and I'd finally come to love the music of my culture and the dancing, but I couldn't drink, so my joints were all stiff and I could feel my muscles burning and had to give up. I got so upset... Hate having to leave to go lie down too, which is another reason I wanted my family here, plenty of room for lounging in my living room, which is open & next to the dining room, so even if I can't finish eating or feel sick I could go recline & still be with the family. I've discovered that though I do have to lie down sometimes, no choice, if I can still have people around it makes it less awful. Unless I've tired myself out completely of course, then like the author of this article...time to go...

Don't have to worry about that this year though! Kinda nice, no more doctor's appointments this week, either my PT clinic got confused and cancelled the appointment I had for tomorrow! Yay!

Myasthenia gravis - PubMed Health

Here's a better article on Myasthenia Gravis. That includes more symptoms I have, such as the hoarsness/changing voice, weakness of facial muscles (although I've always thought that was just my smiling muscles being out of use because I don't get out enough? lol) Difficulty maintainig a steady gaze (I've noticed people I'm talking to over the past year or two looking to the side, behind them, as if trying to see what I'm looking at, so have been wondering if I have a wandering eye?) and now that I think of it, when I'm tired, especially while driving but not always, it's hard to focus my eyes, they just zone out, and if I try and force them to focus they feel all tired, I'd chalked it up to lack of bloodflow to the brain from being upright, but...) Plus the difficulty breathing in the morning and even during the day that I usually get when I'm doing's like I forget to breathe. When waking myself up I have to actually prop myself up or I can't stay awake, and it feels like it takes super-human strength to prop myself up...

Ok, like I said freakier & freakier. This particular article makes it sound much better to have than CFS though, lol. great it would be if I could have something where I could get treated enough to enable me to go back to work...I was actually fantasizing about working retail today, ha! Not like I could manage it where I am healthwise right now!

Myasthenia gravis - PubMPublish Posted Health

Myasthenia Gravis - Symptoms affecting the mysthenic patient

Wow. So I was reading up on Cervical Disc Disease and somehow came across some information about a disease called Myasthenia Gravis, which, the more I read about, started to freak me out a bit, because so many symptoms sounded familiar!

Symptoms such as:

Muscle Weakness
Burning muscles
Trouble swallowing
Trouble with breathing
Trouble keeping arms over head
Walking funny
Losing one's balance or having one's limbs give out
Trouble Speaking

All of which I have. What really got me, was the description of the upper back pain when the back gets tired of supporting the neck, which is my main problem, a bizarre sort of burning pain that gets especially worse when I exert myself doing things such as dishes, folding laundry (KILLS me) or sitting at a desk using a computer (this has actually gotten worse, I'm lying in bed w/a laptop on an adjustable-arm laptop desk and it still hurts!). This "pain" has always confused me, because it's more of a burning sensation, and is also accompanied by shortness of breath (I had finally just decided to chalk it up to the pain? But the pain's not that bad as pain goes, I just get an overwhelming need to lie down to stop it.) I lie down, and if it hasn't gotten too bad, I'm okay after 15- 20 minutes or so, if it has, I sometimes require a heating pad to calm it down (which is not going well w/my spine issues lately, which totally sucks, because my back is begging for it, but it makes my spine feel like it's swelling up in an angry sort of way--newer development) and a longer period of rest. I've also had experiences where my thighs muscles burn in a similar fashion when attempting to dance, and if I don't pay attention (cuz sometimes a girl just wants to dance, dammit!) my legs will just give out.

The arm thing, has definitely been an issue for awhile. I've finally started trying to blow dry my hair again after a long hiatus because of this, but I only do it cuz it's cold, and sitting down, usually bent over with my head upside down. Forget trying to use a brush to style while drying though!

Now, especially lately, I have felt like I was walking weird, kinda like stomping around or waddling a bit. I figured this was due to my discomfort of being in public alone/social anxiety, whatever...that I was being paranoid, but I'm aside from being sure people are staring at me (which many times they are) I'm not usually paranoid.

The losing one's balance thing has become an issue the last couple of years, especially since my move. Aside from my hobby of walking into doorways and corners of walls that move into my way, I randomly (and increasingly) find myself suddenly standing on one leg trying hard to stay on it with the other flailing about as if it suddenly forgot what it was supposed to be doing, and it takes a bit to convince it, usually with some arm flailing as well, which way is down and plant it back on the floor. The other day I had it happen while standing in a doorway, hand on the doorframe, talking to my Mom & cousin, suddenly I found myself falling sort of sideways, and had to grab onto the doorframe with both hands and ended up with my back on the front of the doorframe kind of hugging it, as if someone had turned me from 9 o'clock to 6 o'clock, and feeling kind of sheepish, hoping my cousin didn't notice and trying to reposition myself to a more normal stance as quickly as possible. It's so bizarre when I really think about it, because it kind of seems like vertigo, but I don't feel like the world is turning, it's more like my body has just lost touch with it's sense of equilibrium. I 'm conscious of very firmly willing my balance to return, forcefully, I suppose, as one is wont to do when struggling against gravity I suppose. Man, I wonder what I look like, because I feel like a freak when this happens. I much prefer walking into doorframes and corners. As long as the don't provoke a loss of balance, which they sometimes do.

Now the swallowing stuff, well, I seem to have a higher than normal tendency to choke on water at times, and this weird thing where I seem to have to hold water in my mouth before swallowing it, as if I have to coordinate my muscles, get them ready or something. Sometimes I forget and just hold the water in my mouth until I realize it! (Not for long periods of time at all, but one time I somehow managed to smack myself in the face and accidentally forced the water out of my cheeks. I've started trying to pay more attention to this, because that's when I realized if I did this around people I'd probably look like a huge idiot, cheeks all puffed-up with water!) Seriously. This stuff isn't normal, right?

The speaking hasn't been as bad lately, at least not in English, though I do occasionally spout some gibberish, but I'm having a helluva lot trouble with Spanish, to the point where it's become really annoying to me. At a point where my Spanish vocabulary has expanded tenfold, and I should be finding it easier than ever to converse in it, I seem to be finding it more difficult to make the correct sounds, rather than easier. I find it especially hard to combine languages, simple things like rolling my R's in Spanish names and making sounds distinct to Spanish pronunciation have become noticeably difficult, I've even commented to my Mom that my tongue isn't moving right & seems to get all tangled up. I know how it's supposed to sound, but I can't get it to come out right, even after several tries. Not to mention that I had a friend actually laugh at my Spanish, and when I heard myself pronouncing the words it did sound pretty mashed up and I couldn't understand why because I'd sounded just fine a few months back...years back even.

The other biggies that I didn't list above, are eye muscle problems (which are a key symptom of the disease, but not always) which I don't think I have, and problems with the Thymus gland...which I have been wanting to get tested, because an alternative healer, who also told me my cat was sick before she was, and that my endometriosis was back (this woman had never met me before, and I gave her no details of any medical problems, we barely spoke before she treated me) also told me she sensed something was up with my Thymus gland... Oh, and this can also (though rarely they claim) cause Dysautonomia) and be brought on by a viral infection.

So here's the link:

Myasthenia Gravis - Symptoms affecting the mysthenic patient

I have to add though, that although the thought of having something more treatable than just CFS is wonderful, I'm a little freaked out. (The idea of having to take steroids or immune suppressants is not something I want to contemplate.) I will have to dig up those lab results again and see if they tested for those particular autoimmunities, and will definitely mention this to my Neuro when I see her again.
Wish me luck...although I'm not sure what that would be in this case!

Monday, November 21, 2011

Whacky Itching Could be Related to Cervical Spine Disorders

Wow, who'da thunk it? I've had weird, unexplained itching for years now...turns out spinal issues, one article specifically mentions C6, can cause neuropathic pruritis, or: ITCHING!

No Place Like Home

Back home. I went up to the old stomping grounds to help out a friend with a work event she was hosting, just help keep track of guests and such, and kind of got stuck out there! My Mom got my birthday card and present and decided she loved me again, lol, so I stayed for her birthday. (Thank goodness, because although I had fun at the event, I think all the excitement threw my nervous system out of whack, so I couldn't sleep for hours, but was too exhausted to drive home.) We went for a late birthday brunch to celebrate, and then my cousin came out from L.A. with her boyfriend and joined Mom, brother, and I for dinner around the corner at a kitschy Chinese restaurant. Exhaustion again. (I would have gladly rested all day THAT day, lol.) So Friday, complete apathy, tiredness that could not be overcome through willpower. Really wanted to go home, but I was just too tired! Totally planned on going home yesterday missing too many comforts: Wireless Internet, more than one place to sit comfortably (Mom's apt is tiny, as is her couch) my own bed & pillows, which the neck is tres picky about lately, easy temperature control (like many people with Dysautonomia, my inner thermostat does NOT respond well to even slight temperature changes, ugh, just a couple of degrees too cold, and I can't get warm, just a couple of degrees too warm and I wake up feeling like I've been hit by a truck, end up drenched in sweat, or if unable to sweat, which happens sometimes, like I'm about to internally combust).
So by Saturday I was determined to go, if still exhausted, and getting quite grumpy. But then my Mom gave me my Vitamin B-12 shot, and I got happy and optimistic figured out how to play Monopoly on her Satellite TV, and decided staying one more night wouldn't kill me. Unfortunately, pillows and foreign beds were NOT my problem, at least not as much as a doggie left alone by it's owner upstairs that barked for about 6 hours straight...Then I woke up to rain, but fortunately, all the rain lately seems to have rendered Southern Californians much more capable of driving in it, so the going was wet, and slow, but steady and not marred by excess traffic or accidents. Soooo good to be home at the roomy, multi-roomed, comfy, radiating-heated condo! And Wi-Fi! (Had to let my cell get disconnected, but I discovered I can still use most of the apps via Wi-Fi! Yay! Hmm. If I can still use the Internet on it, maybe I can use Google Voice on it and get rid of my cell service altogether?)

Anyways. I am SO, SO glad that I have no appointments tomorrow. I'm sure I'll find something that needs to be done tomorrow, but it's nice knowing if I wake up feeling like hell or even just as tired as I have been, I can sleep in and not force myself too hard. Of course, Tuesday and Wednesday, PT. Then the holidays begin, ugh. Don't get me wrong, I ADORE the holidays. I just hate being broke and from a newly broken family for them. I had resigned myself to having to stick with just the three of us for Thanksgiving by deciding I would have it at my place (we'd talked about it months ago) last year it was at my brother's and I exhausted myself silly helping bring things and doing my part, had to lie down by the time his girlfriend and her Mom arrived, hated it. Plus, this place is way roomier than my Mom's, more comfortable than my brother's shared, sparsely furnished apartment, and has room for everyone to sleep over. I also figured not having to drive anywhere I would be able to start early and pace myself. Plus I've only once had the pleasure of hosting Thanksgiving in my home, the only other time being when I had my studio, for my best friend and her boyfriend, who spent the whole time arguing. (Between that and exhausting myself cooking & cleaning, I did not enjoy THAT it much, though the food was delish, lol.) Unfortunately, my Mother has developed a phobia of coming to my Dad's former digs, and keeps trying to tell me my brother won't come as an excuse, even after I talked to him, found out he was planning on coming here, and I told her. I told her to come up with a new plan then, and she didn't like that plan either... So...I don't know. I'm starting to not care. It makes my brain so tired trying to function, much less cook in crowded, not completely familiar surroundings. I've had enough driving for the week. I know my brother will come to my Mom's for an hour or so and leave (another reason I was looking forward to having it out here, some family time! That's what holidays are about. Stuffing oneself silly and then hanging least for the evening, if not for leftovers the next day!) and it altogether just doesn't seem worth it make two people happy who don't really care that much about making me happy. So in the light of the anticipated holiday gloom, I decided to throw myself a birthday party. I was a bit apprehensive, but decided to go out on a limb. Hors d'oeuvres fresh from the microwave, hot chocolate, spiced mulled wine & some music. Hopefully I can handle it, haha. But I need some holiday cheer, and I know I can't even depend on my family for my birthday (my brother's birthday is the day after and he decided to celebrate it the same day; last year I got insults and ran out on by my Mom because I was tired and wanted her to take care of her own phone calls & paperwork, and stood up by my Dad) much less Christmas. I so wish I had my own family just to populate the holidays, lol. Now here's hoping the friends come through, though I don't expect much. Oh, wow, don't I sound like Negative Nelly. I can't help it. It's my reality. But I will choose to make the best of it. So Birthday party it is. I know a lot of my friends seem to have taken it personally that I don't hang out with them anymore (never mind that I'm home resting & they can't visit) but I think a couple will show up, and who knows, that might work out for the best!

Tuesday, November 15, 2011

Water Pulsator - Natural Sinus Rinse by Waterpik SinuSense

Anyone tried this? I swear by Sinus Rinses, as a last resort, lol. (Very helpful, but come on, it's a pain in the butt.) I wonder if this would be any easier?

Water Pulsator - Natural Sinus Rinse by Waterpik SinuSense

I'd love to. $34.95, not too expensive for the average person, I suppose. There are coupons on the bottom of the page, in case anyone's interested in trying it out and letting me know how it goes!

Defying Gravity: POTS Letter For Students by Dr. Ahern and Stacy Reed, RN

Love this! It is SOOO hard & awkward trying to explain it all, and this is it in a nutshell!

Defying Gravity: POTS Letter For Students by Dr. Ahern and Stacy Reed, RN

Sunday, November 13, 2011

Anemia - B12 deficiency can cause False Positive Pap Smear

I had never heard of this before:

"Possible Complications

Vitamin B12 affects cells that form the outer surface of the body and line inner passageways (epithelial cells). Therefore, a lack of B12 may cause a falsely abnormal Pap smear."

Whoulda thunk?

Anemia - B12 deficiency: MedlinePlus Medical Encyclopedia

Treating Chronic Fatigue Syndrome (ME/CFS): Low Dose Naltrexone

Anyone try this? Read about it before, but it sounds especially fascinating to me at the moment. And it's CHEAP!

Relieves pain
Relieves fatigue
Anti-viral properties (this, I did not hear about last time I saw this, I don't think!)
Helps inflammation
Even helps w/some side-effects of HIV drugs!

Wow. Full story below:

Treating Chronic Fatigue Syndrome (ME/CFS): Low Dose Naltrexone

Testing, Testing...

Yay! The girls are okay! I've been tired since, so it's taken me a couple of days to get to this.
It was a long day. I forgot that I didn't remember how to get there (even though this would be the third time, as I had an ultrasound there, and it shares a parking/driveway with the SSA hearing building where I had to go in May for my hearing) so that got a little complicated, fortunately only involving some stress and getting off on the wrong exit to find the address and enter it into my cell phone's GPS. (It's so hard to imagine life w/o Mapquest, Google Maps, & GPS, isnt' it? It actually surprises me when I stop to think how I used to get around w/all the driving to new places I used to do when I was well and I remember that I used to carry a Thomas Guide in my car and plot the directions on my own! Mind blowing! Haha! Anyone remember Thomas Guide coordinates? Located at H22 in your Thomas Guide! LOL!)

Anyhow, though I will never recommend having your boobs squashed by a robotic machine in every which direction, I have to say that I was pretty impressed by the rest of the experience. There was a separate section of the radiology department especially for Women's Breast Imaging. The staff was wonderful, & all female. There is a separate waiting area after you change into your robe, complete with munchies, tea, cocoa, & water. My radiology tech was a bit on the serious side, but she did keep up a constant chatter, which was a nice distraction, and she was very kind, offering me a blanket, while I waited between tests and while I was waiting for the doctor to look over them, she get me another one, graham crackers, and some water (I'd mentioned I was hungry, because my stomach kept growling). That took awhile, but it was fine, because I was lying down comfortably during the wait, although it WAS at that point that I got a bit nervous and realized I really, really didn't want to have cancer. I got to thinking, and it would mean ever so many more trips to the doctors and hospital, and tests like these, ugh! Yes, I'll stick to the illnesses I have, thank you very much, even if no one gives a damn about them, I can't get disability benefits, help from my loved ones, proper medical care without a ton of effort, if at all, and I'll likely soon be homeless. Wait. Cancer is starting to sound good again. Just kidding.
So I wouldn't say it was a good experience, but I am definitely grateful to the people who thought up these types of centers and all the people who give so much TLC and kindness to the women they serve.

Monday, I'm off to the Neurologist. I'd be looking forward to that, since she can hopefully get me some help and evidence about my cervical spine issues that have been bugging so much lately and SSA misinterpreted, as well as potentially get me some further diagnostics and treatment for the Autonomic Dysfunction. Except that I'm totally broke, and am not sure I have enough gas to get back home after I get there! Oy. Cashflow is definitely going to be an issue this week. As well as being out of gas, I'm running out of vital supplements. Ran out of my probiotics, which has my stomach up in arms. All gurgly and yuck.( I see stomach flu symptoms and many trips to the bathroom threatening.) Also out of my ginger candy for nausea & queasiness (fortunately they take foodstamps for that) so I have to go get some more, I'm gonna need it more than usual... Took the last of my enzymes that were keeping my sinus issues at bay. Oh, and I realized the reason for all that wacky tiredness? Sinus infection, duh. Ever since I started taking the Epivir, my system can keep them at bay (rather than my being knocked on my butt, miserable, feverish, exhausted & tachy) but not quite fight them off. (I'm still tapering it off, so dunno if it's still working or if it's had a permanent good effect on my immune system.) I had gotten my PA to write me an Rx for antibiotics because I suspected I had an infection, but was saving it for if it got really bad, cuz half the time, antibiotics make me feel just as sick as what they're treating. (I hadn't realized that it was probably causing the really bad fatigue, although I had other bothersome symptoms.) So I was all ready to go get it filled finally, but then I realized it costs about $20 more than I have, ugh. My phone is due this week, Mom's b-day's Saturday, electricity next week, and no cash, yikes. Oh well, just have to see how it goes... Hopefully I can manage to sell off some furniture I've had listed. Stupid people keep e-mailing me about buying them then never getting back to me...starting to think someone is just messing with me...maybe those scammers have changed their tactics and are waiting to see your e-mail address (to see if you've told them off before) before they offer to send you that check for $5000 that you just have to cash for them (cuz it's counterfeit)? It's just weird how many responses I've gotten and not one of them follows up!

Well, at least it's been a nice weekend. Ever since I figured out the sinus thing, I gave in and just let myself rest, and best of all, not pushed myself to do anything that requires pushing myself to do it. (Which is just about everything most people do on a daily basis.) Such a luxury...I think I'll go get back to it!

Friday, November 11, 2011

Are Pets a Luxury?

Are Pets a Luxury? | Care2 Healthy Living

Interesting arguments. I think pets need us as much as we need them. I really can't see chihuahuas and pomeranians fending for themselves, around here, or in any other environment. Here, they'd be dinner for the coyotes...cats might fare better, but from experience, not for long. We give them food, they give us, and the gift (for us as well) of loving them back; and yes, sometimes, a reason to get up in the morning, as I'm sure many of us with chronic illness can testify, lol. :)

Funny, not sure if I mentioned it, but my primary care provider actually told me to get one! I miss my kitty so, almost a year now. I wouldn't mind getting a new pet at all, but the allergies make things much more complicated. (For those of you who don't already know, I, like many other people w/CFS/FM, suddenly became allergic to my cat of 10 years a few years bac, my doctor says it makes sense as the part of the immune system that's wiggy in us is the same that overreacts to cause allergies, or something like thatk. Nothing could make me give her up though, it would've been like giving up my child.) Maybe I'll hit the adoption website again and see if I can convince anyone to let me foster a less hairy I can see if it makes a difference (besides, then they take care of all the vet bills, and it would be a good deed, giving them a home until they find a forever one, if I can't cope long-term).

What about you out there, chronically ill or not, feel free to share how a pet has enriched your life! I never get tired of pet stories.. :)

Thursday, November 10, 2011

PT, Fish & Tea

Well. Today definitely had some rough patches. I've been having that thing happen again where I wake up and can't stay awake, I have to summon all my willpower to try and prop myself up to a semi-sitting position, or else I fall back asleep so deeply it's like I've lost consciousness, and in fact, I've often debated whether or not I actually do. So that's annoying and been going on for a week or two I think. Usually not a good sign, it's happened in the past when I'm really not doing well, or on my way there.

Worse, usually even if I'm down in the dumps the night before, I wake up okay. I dunno, might it was that I had to answer a call from the doctor right after waking up, pushing me right into overdrive mode. No chiropractor after all this Friday, cancelled, it's a holiday. And I'd realized I had another missed call from them, the transcript of which I didn't understand, so I had to talk to that person too. Which reminds me, I have another phone call, another appointment to make, ugh. Oh, right I'd forgotten. Also an e-mail saying my Internet charge didn't go through, and not a penny more coming in...

So I was grumpy and trying to get ready without stressing out, debating whether to shower or not, that kind of thing. And then I called my Mom for something, she said something that struck a dissonant chord with me (something along the lines about examining what I may have done wrong to bring all this awful stuff on myself) and then I was just fuming, because even though it's totally irrational (unless little kids with cancer have done something wrong and are being punished for it too) of course I've asked myself things like that, more though, like, wondering if this is some kind of karmic payback, in which case there's not a thing I can do but live through this. Still, there's always the guilt, like, I should be able to fix this, I must not be trying hard enough...but you don't need to hear that ish from your own mother...

Anyhow, I was falling apart, feeling like imploding. Like, I'm emotionally, physically, and spiritually so tired, and I feel like I might snap, and where do I turn? But then it was time for my Physical Therapy Evaluation appointment and it was time to pretend to be sane again.
Which turned out to be a good plan. It was just around the corner, so close, and the Physical Therapist was just amazing.

This tiny little thing, cheery, not ridiculously so, but full of energy and on top of her game. Took an extremely thorough history, so much so I realized things I'd never put together before, also gave me some input on the severity of my back problems after looking over the new records/test results I brought with me, and best of all she was interested in the entire picture, not just my problem area, and came up with a plan to try and help with my general well being, not just strengthening my shoulders & stuff, although she wants to wait until I see my Neuro & Cardio docs to have them clear me for some of it. I hope she's not toooo overzealous though, she wants me to start cardio twice a week for 20 minutes...even though I told her I was barely managing 15 minutes and had been planning on re-starting at 10. Well, I will see...I think she's right, I need to do SOME exercise for my well-being. Not just my weight, which continues to go up, but my circulation, muscle tone, and sanity. So that was that...
Tomorrow, mammograph and ultrasound. Yup, they required I throw that first one in with the ultrasound, ick. I've always thought that whole procedure sounded barbaric, but oh well, just another indignity of the female human condition to endure. Besides, if I have cancer maybe I can finally convince the SSA I am sick! No, I'm just kidding, I'm sure I'll be fine. Besides, I feel my case is looking stronger every day...I think maybe something about me has changed, but these days, instead of feeling defensive when I go to the doctor, I find they believe me before I have a chance, they acknowledge that I'm pretty unwell & I've been blessed with a primary care provider that is on top of her game, and willing to do her best to help me, even if it means learning new things, and she even cared enough to suggest I get a cat! Ha! (For those of you that don't know, I had one for 15 years until December of last year, she got sick and passed away, and I'm actually allergic to cats as of a few years ago.) So she suggested a fish, lol. I actually think she's on to something. She convinced me to try doing washing 3 dishes every day, since that's been an issue that's frustrating me. Finally did it today, did 5 actually, lol. Flared my trapz again, badly, but I got to have soup and tea. I was feeling SO tired & stressed, like wired, uncomfortable, so I made some Kava tea, and the stuff is lovely...tastes chocolate-like and relaxes one.Totally got rid of the awful wired feeling. Yay for clean dishes! I so wanted to do more but something is something, right? What kind of fish should I get, any ideas?

Monday, November 7, 2011

Any Tips?

Oh wow. Seriously. I'm looking for tips. I have a dilemma, and it's beginning to overwhelm me right now. I'm just so tired lately. It's a different tired. I think. I don't know anymore. But I think it's different, because I want to sleep. It's all I want to do. I think usually, or at least more prevalently, when I'm tired, I just feel exhausted, but I couldn't sleep if I wanted to. No, this is different. It's not like I'm sitting down and dozing off...but I do want to just do nothing. Got my "food money" today. Had a nice shopping list I made myself make last night, because I'm trying to minimize the running out the last two weeks of the month. Usually I'm rarin' to go. I mean, it's the only real shopping I get to do, lol! Plus I've been low on stuff, and eating lots of unhealthy stuff, and my stomach is starting to act up. I woke up at a decent hour, and mentally wanted to go (mostly to get it over with!) but my body seemed to be saying to take it slow. So I convinced myself I would go out & get breakfast (which as it turns out they didn't have, because, as I found out a couple hours ago, I looked at the wrong chain's website) and bring it home & eat it. My thinking was maybe I just needed some fuel. So I went out, in SWEATS (gasp! No really, that's a big deal for me, my Mom, bless her, brought me up with a healthy sense of vanity, lol) and NO MAKEUP (I at least always wear eyeliner & lipgloss) cuz, after all I was just going to a drive-thru...but like I said, I went to the wrong one, so at a loss for another option, I gave in, swallowed my vanity and went to the grocery store in the same parking lot to get some breakfast food of some kind. I realized I might as well pick up the double gallon of water they wouldn't have at the health food store-ish place I'd planned to do my grocery shopping at, and then figured I might as well get everything I could get there...Then I came home to resume the rest of my plan, but nope. Can't seem to get back out. I did fill out some & fax some forms for my attorney & e-mail them, but for the life of me I can't get my butt out either to the laundry room, or to the store. I just want to go to bed. (Granted, filling out those forms really kicked my butt, Dysautonomia I guess? I felt like I couldn't breathe, and it didn't let up until I reclined my recliner ALL the way back and lay there for awhile. It's anxiety attack I guess is the best way to describe it. But anxiety attacks don't get better just from lying down, so it's gotta be that. Man, I wish I had a doctor that treated just that....

So I don't know if keeping up with all the doctor's appts is wearing me out, or if it's tapering off the medicine that was causing the anemia, or the sudden shift from summer to full-on winter weather or some of all of the above but it's getting old! I'm trying to spread things out and simplify wherever I can and keep organized but....I'm getting overwhelmed! On the days I have doctor's appointments especially (I usually try & run an errand or two while I'm out) I am just desperate to get home and get in bed! My kitchen actually smells from the dishes not being done and I got tired just now doing one so I could have bowl of soup...cuz I'm suddenly freezing, and somehow spending $40 at the store didn't get me anything microwaveable and slightly healthy. I just microwaved it, reclined to write this in my chair while it was heating up, and now I don't even wanna eat it, I just want to go lie down and take a nap. Maybe I will save it for later and take a nap, call it a day. After all, I WAS thinking earlier how I can't wait for it to be time for bed so I can go to sleep and forget about getting anything else done...Maybe that's the answer? I have a doctor's appointment early tmo afternoon, but I can probably find something to wear amongst the clothes I still haven't put away from last time I did laundry, lol. Sigh...Strangely I'm calm lately though. Thank goodness for small favors...
But anyways, yeah, what do you guys do when you feel like a soggy vegetable?

Thursday, November 3, 2011

Sleepwalking through Life

I just took half a tranquilizer. I feel so overwhelmed, it's almost a scary feeling because I feel strangely calm, but with undertones that I could lose it at a moments notice...maybe that's what my new psychologist was referring to yesterday when he said I seemed so calm describing my illnesses, my life, and how it's all affected me. I was tired, and getting to his office 20 minutes away by 1pm took a lot of planning and will power. I think THAT'S the problem. I am running on pure will power lately, so it's bound to make me a little zombie-ish. Have to, have to, have to, must do... I feel like I just need a few days, a week, of doing NOTHING, of everything being easy and effortless. I've been keeping busy. Trying to have a social life, because I don't think I'll make it without one; I can't keep wishing my family would be there for me. I need people who have the capacity to give a damn. But the cost is high. So exhausting.
I'm tapering down on the anti-viral, as per my doc's instructions, and I'm starting to get sore throats again daily, and hoarseness, feeling like I'm coming down with the flu, but then it goes away. (And comes back, the very next day.)
Pain is back full force. It's a whole new type of pain, that makes the aches and pains that (fortunately) were the whispers that I'd learned to live with from the Fibromyalgia seem insignificant. I feel like I have lobster or a scorpion attached to the top of my spine, I swear I can feel the vertebraes; they hurt and they are wrapped in barbed wire, making the skin around them raw and sending shooting pains to random areas of my upper back, almost to my armpits, and sometimes down into my fingers even. I can't even get comfortable lying down much of the time, and my recliner was off-limits until right now. And normally I need to lie down often...Fine, I'll adjust, I'll stay upright longer to ward off that discomfort, but then I start looking for things to do, which is easy, because there are dishes and laundry, but then, if I do those, it will aggravate my back. Catch 22. Yes, I've been pulling out every trick in my dusty pain-management archives of my brain...heat, no, ice sometimes, capsaicin, when desperate and willing to risk the stomach effects, daily anti-inflammatory, shiatsu massager if tolerated, TheraCane for what that doesn't get, an extra muscle relaxer or more than one narcotic class analgesic a day, which I usually would hesitate to do...Fun times are here again! lol. It's ok, I'm seriously laughing, what can I say, maybe my therapist is right and I am getting somewhat Zen? Sometimes? What can I do, one must keep on keeping on, or so they say...

I'm waking up SO tired again. I've slept till 1pm twice this week, and still woken up tired. So much to do at the beginning of the month when I get my little government check. I desperately have wanted to do nothing most of the week and inevitably find that there is something I HAVE to do. Doctor's appointment's to keep. Oil to get changed for the Smog Check I can't afford for the Registration I also can't afford. And then I know telling the shrink that my very soul is tired was right on, because making myself go back out to get some food (can't cook with all the dishes dirty) after 20 minutes of indecision so bad it almost drove me to tears, I pull out of my carport and tear off my sideview mirror on a pole that's always been there, which as it turns out, makes driving so much harder, and adds more money to the things I can't afford but must somehow come up with column. (No, not to worry, I wasn't on any medications I shouldn't drive on at the time. Just a fully natural daze I guess. Plus the neighbor parked her car too close to mine, making me veer to the left myself after pulling in.)

Now reality hits. How the hell am I going to get through all the doctor's appointments I have scheduled for myself this month? (They do kinda have to be now, case is waiting for it) 2-3 a week for a month, topped off by Thanksgiving and birthdays all around, for myself included. Thank goodness the Physical Therapy is right around the corner, but still, I'm not used to being out & about and having places to be feel good or not, so it takes far more out of me than it should. (Or else I'd gladly volunteer, that dilemma is what keeps me away from that, as well as school, so exhausting to deal with letting people down. Right now is about survival, I think that's enough, no?) No, people aren't as much a challenge as they used to be, I was a much bigger recluse last time I had PT regularly. Then, I was just so happy to be around people my age, such a rarity, and they were good-looking, chatty, and gave me massages & made me feel better! And thank goodness because I was becoming a bit tooo eccentric!

Lately I've been graced with kind people and easy conversation almost everywhere I go, now that I think about it. I was actually able to have a slice of pizza at Costco, completely relaxed one day recently, just people watch and feel completely calm and at ease...was it the Pharmacy Tech that shared his experience with the two Capsaicin creams I was trying to decide between? The smile and gracious politeness of the checker, or the easy conversation with the pizza girl? Maybe my energy has shifted and they are just reacting to that. Whatever, I'll take it!

It's later, lately, when I get home, that I can't turn it off. Everything is going but deep inside I'm so exhausted and somehow I can't stop the overdrive and it's hard to handle. Life seems like a big storm of chaos this month, and I'm expecting surprises to boot and there's nothing I can do but walk through the storm, and see what I encounter, hopefully stay in the eye for a bit when I can.

Good news is, I haven't gotten AS sick as I'd feared getting off the anti-viral, though, strangely, supplementing with Zinc seems to be helping a great deal (just ran out and already noticing the difference, ugh) and the Nattokinase & Indole 3 Carbinole supplement I took seem to have done the job, very slight discomfort this month, compared to last, for a much shorter time (although I was on various analgesics before & at the time) and also hardly any worsening of autonomic function, just bit of dizziness, but not even almost completely blacked-out-eyeball-squeezing, headache-inducing kind. Well, I'm sleepy, which is happening early a lot lately, and I'll take it. Going to see a Chiropractor tomorrow, yay? My head keeps telling me this will likely help, even if painful at first (I usually feel like my back is in pieces when I get an adjustment after not having one in a long time, and then better later) but I've never had quite this type of pain before, usually it's muscular, this seems to be all bones and nerves so I'm a little scared. Whatever happens, I MUST get to Costco sometime tomorrow, too, running out of essential meds & toiletries, ugh, wish I could do home delivery! And that damned mirror...Oy. A credit card and someone to help me run errands would be SO handy right now...

Monday, October 24, 2011

Great Link about What Your Doctor Should Include in a Report for your SSDI Case

Found this website called Survivorship from A to Z, which is awesome. It gives advice on guidelines for 3rd party Function Reports & Letters from friends & Family, as well as the one below, for doctors. (Apparently they expect them to speak Social Security Legalese, too...what's up with that? It's like being in school again, being forced to write papers in MLA or APA formats! Just more confusing perhaps!) Anyways, this kind of breaks it down. Have to show it to my doctors. Left my decision with one of mine the other day, in hopes he'd take a look at it, see how nasty they were, figuratively tearing his letter to shreds and be inspired to tell them what they want to hear, and make it just a little harder for them to deny me next time. After all, if all of us w/CFS who can't work start putting together airtight cases and they have to actually start giving us the benefits we're sick enough to receive, maybe that'll give the CDC/government/whoever a kick in the butt to start funding more resesarch!

Great article.


Physicians Statement


In addition to obtaining your medical records, Disability Determination Services (DDS) will sometimes send a questionnaire to one or more of your doctors for completion.

Since the forms are created by each state, there is no standard. In general, the forms include questions about restrictions in your ability to perform work-related tasks, social functioning, and activities in daily living (transportation, household chores, personal hygiene) -- all information that you also provide.

If you know one is coming, alert the doctor ahead of time. Ask all your medical providers to contact you should they receive an inquiry from Social Security.

Some doctors will permit your input in the completion of the forms.

  • Remind the doctor of the definition of disability used by Social Security (instead of their own idea of what a disability may be). See Disability For Purposes of Social Security Benefits.
  • Ask the doctor to complete the statement focusing on both:
    • How your symptoms keep you from working.
    • The affects on your daily living.

If your doctor will agree to it, review the statement before it is sent to DDS. There may be symptoms the doctor didn't include or affects on your work or daily life that aren't included.

See What Your Doctor Should Include In A Report for advice on what should be included in the report and how to get it.

NOTE: If a nurse practitioner is your medical provider, try to get the report signed by a doctor.
Again, from:

And here are a couple of more related articles:

I swear, if it drives me to my deathbed, I am going to win these benefits! I will beg for letters, reports, beg borrow or steal to get all my records complete to submit, whatever! I'm getting beyond over jumping through hoops, so it's do or die!

A Pain in the Neck.

Hi there. I should probably not be typing right now, but I'm bored silly and I keep stuffing my face even as I feel myself getting fatter, so I need a distraction! Sunday, even though my upper back stuff was still bugging a bit, I got frustrated, and told myself blah, it's just a a lil vacuuming. I'll live! So I vacuumed the master bedroom. Silly optimism. I soon had a burning shoulder, and felt like someone was sticking a crown of thorns into my neck on the right side. Switched to the left till I killed that one too. Last night I was in so much pain & discomfort, and nothing seemed to help; Heat, Ice, Rx-strength anti-inflammatory, hardcore muscle relaxant, Arnica Cream, Capsaicin Cream....and if I'd had no copayment I was thinking about hopping over to the ER...Haven't had pain this bad in ages! I think it's the messed up discs/pinched nerve, magnified by Fibro, because it ended up being that type of thing where I couldn't stand any pressure or even light sensation on it, plus, I think the Capsaicin really helped in the end, and that affects nerves to shut down pain soo... Finally got to sleep . Woke up better. But not for long. Within an hour I was to the point where I was doing yoga stretches, then I know it's bad! Helped a little, then I had to lie down, because even the back of the recliner was aggravating it, and it's amazing how much your arms weigh when your shoulders/back hurt just having them attached, all the little things you can do to aggravate them! Tried to watch depressing reality TV about overly fat people and overly skinny people... Yeah, I ended up making more phone calls, I couldn't take the inactivity. More hoops to jump through to get the specialist for my Endo, got referred to the wrong one again! Oh, let's not forget a shouting match with my social worker, who claimed not to have gotten my form yet, and then found it in her Inbox. That could have been that, but I made the mistake (more like right move) of asking her about the stupid Direct Deposit form I sent her 2+weeks ago! She said she had received it but knew nothing about them...and when I told her I'd assumed she did because they had sent me one a few months back, she started to get defensive so I told her, it's okay, just find out and get back to me, you can do that, right...ugh, it was just ridiculous. Long story short, I'm pretty sure it's not going to be set up for next month, but I kinda knew that, would have been okay with it if she hadn't made my heart rate shoot through the roof with her confusing shouting! Wow, scary this is starting to feel normal, but I just took a step back and thought, Wow, my world is SUCH a madhouse...Just utter madness. But what else to do but soldier on?

Just so long as this darn pain eases up, I'd forgotten it could be this bad. It totally makes my anxiety go up, especially when nothing is working. Usually it's just aches & pains, malaise, but somehow that's not the same as full-on pain. Tempting to try the gym tomorrow, because that same anxiety had me eat half a box of graham I can just do the recumbent bike and maybe that will ease the tension & help? Of course, the idea was to start back at a few minutes, so as not to piss off my heart/nervous system so not sure how well that would suit both purposes, ugh. Hate having to think about every little thing. Alrighty, my hands & arms are prickling, so I guess it's time to go for now.

Saturday, October 22, 2011

Fabulous Article on Pacing

Although I just tried it, and all that happened when I decided to stop after 20 minutes or so to rest, is that I ended up feeling too tired to get back up! Ah well, I did clear up the living room and some of my room. But what I really, really need to do is vacuum...if I want to sleep in that master bedroom. (I sprinkled carpet powder on it a few weeks back, and if I don't vacuum it up first it's likely to make my allergies attack.) Hmm...Little Engine that Could is playing in my head...(I think I can I think I can...) While I attempt to convince my body it wants to get up, here is a great article from the amazing Adrienne Dellwo on Pacing for CFS & FM, which in truth, is a good idea. After all, that's how I got enough dishes done last night to eat breakfast AND lunch in, woohoo! That and a glass of While you're there, check out her articles on Stress, Acceptance, and Grieving for those with FM/CFS! I wish I could have found these articles a couple of years back!


Cool Apps for Tracking Activity & BP/HR

There are a bunch of these out there. By far one of the most impressive things I've found about Android phones! So far I have only found Heart Rate Monitors for free, and I think they work best with cameras with flash, which I do not have, but still. The hung for Blood Pressure Monitors has not been as successful, at least not free ones, but I know they exist, because my cousin, who is the one who first turned me onto these, has one. I'll find out what it is and share when I do. Buyer beware: many of the apps that look like BP Monitors are actually logs so you can enter and track your data, AFTER using another method to measure BP or Pulse. But those can be useful too:

LinkLifetracker - Tracks
Heart Rate Monitors for Android

Friday, October 21, 2011

I feel like I'm working as a Professional Scheduler.

I'm writing to stall on doing the dishes. No, not really. I just had some lovely, salty, Onion Soup. Sooo good. Now I'm just in my recliner, letting it digest a bit & making sure my heart's not going to go tachy before I go piss my body off by doing some dishes. Okay, I guess I should be more optimistic. I'm going to set a timer for 10 minutes, so maybe I won't get to that point. (But still get to the point where I have dishes to eat on &/or cook with!) I hate dishes these days. I didn't used to, before I got sick. I actually used to go to guy friend's houses who'd had frat parties and clean up for them, it was like a compulsion, ahh, you have company and your kitchen needs cleaning! Must fix! (Thanks Mom, ya clean freak, lol!) So letting that go has been HARD. But I feel so overwhelmed lately...Hey at least I'm getting other things done!

Now, I don't know if it's because I'm depressed and apathetic or I subconsciously don't want because I know it'll exhaust me & make my back hurt, but I haven't managed to do them in weeks. I was going to have someone come do them, but I was feeling too sick to even deal with that, and then when I felt a bit better there were other more important things to spend that cash on.

Everything is a mess. Got my files from my attorney, all over the living room, plus books I sold the shelves out from under, lol. Files I was scanning all over the office area off the living room. Dining table has all kinds of random stuff. My room, ugh. Clothes & papers. Mostly clean clothes. Folding & putting away clothes kills me, I think I finally figured out why, it has to do with holding up my arms to fold & hang. I can't keep up with it. I think I'm going to move into the Master Bedroom, AGAIN, told my Mom sorry, if you end up here, I'm staying in there this time. (I started getting comfortable TWICE and then she came to stay for a bit and left.) That room is bigger, has 3 more windows/lots of light, whereas my room is kinda cramped, and I noticed when I was sleeping in there it was easier to keep them both clean somehow (maybe it was just because the bed was made in the other room? I dunno. Less stuff ended up on the floor, therefore it was more open looking & you could get around in it. Plus, on days bed is more comfortable than the recliner, I won't be sitting in the dark, I'll be stuck in the (now) most nicely decorated room in the condo, with lots of light and airy-ness.

I sent the paperwork back to the new attorney. Woke up way too early, anxious, so I started making phone calls. At least half a dozen later, I'd booked appointments for pretty much every week in November. 2-3 of them. (Thank goodness for my phone syncing with Google Calendar!) Oh, this is going to be fun. (Not!) Worried though, because the really important ones aren't until later in the month, and my appeal is due before then, so I probably won't be able to submit any new evidence from them. Maybe I can convince the Internist, who I'm seeing sooner to send me for some of the tests I wanted to get from the specialists. Well, hey, at least all the appointments will keep me busy and around people, maybe that will help my (since I got sick and broke) yearly holiday blues.

Kinda bummed the PT won't be until mid-November, my trapz are really making themselves irritating. Maybe when I see my PCP next week, I can convince her to let me see their Chiropractor in the meantime. (She'd told me to see how PT went first, but that's over a month away, and my first appointment with her for the referral for that was another two weeks back! 6 Weeks is a bit much to be in pain nearly every day and getting worse, no?)

Figured out for sure what the whole PMS angry thing is. Ever see those commercials for PMDD? Yup, totally what I have. The most surprising thing when reading up about it, was that I'd thought it was like a PMS Depression thing, but the most apparent problem seems to be...ANGER! So right on with what I've been experiencing. I was just fuming for hours yesterday, just like the day before, but worse. I didn't think it could be that time yet, but I checked my nifty new Period & Ovulation Tracking App, which I downloaded mostly for this reason, and yup, actually, almost on the dot, a week away. I think realizing that helped with the anger a bit, but the apathy is tough. I don't feel that bad and I was thinking I should totally try and go play some pool for a couple of hours (the great thing about pool is you can sit down between shots!) and see if I could hang out with the guys I met there last week, but even though I feel slightly crazy spending so much time alone I couldn't motivate myself. I'd also contemplated starting the gym again (I don't think I went the entire month, except for the massage machine, ugh, what a waste of $20!) super slowly though, but then I realized, I'll probably work up more of a sweat tidying up here, even if I split it up, and I know that will cheer me up to have the place presentable again. So I'll push myself on that instead of socializing or the gym....

Oh, but yeah...PMDD. It was hard to see what the treatment options were. I'm already on anti-depressants so...I think I saw one study about alprazolam, but it wasn't very specific. Maybe the OB/Gyn can help with that. Oh wait, that was the one appointment I didn't get to make, figures, they referred me back to my old PCP clinic, where the receptionist transferred me to a nurse, who NEVER answers, and rarely calls back. (Which is why they are my FORMER PCP) Oyyy. Pretty sure another November appointment though. I really hope I can keep up. I got exhausted just making the appointments today, I ended up going back to sleep around noon and waking up at almost 3pm! (Because my PCP was calling me back, they messed up and wrote my female well-exam results on the wrong chart so had to check where they were supposed to write the Ultrasound for, and then also wanted to tell me they faxed my Rx for the PT, which the PT scheduler insisted they needed, and my PCP's office insisted they didn't, lol. Hoops, hoops, and more hoops!)

So that was the day, today...Guess I'll write another post to update about my appointment Wednesday, not sure I said much about that, either that or I forgot some things....