Sunday, July 29, 2012

Inspired into a Funk.

Having a tough time...
Friday, I had big plans. Well, not for the average person, but for me, or anyone with M.E., yes; I'd planned on running errands, vacuuming, and performing key girly grooming rituals. (Probably far too much to ask for in one day, but I was determined!) Instead, I manged to check my e-mail and make some phone calls before that raging fever of weeks past paid me another visit. (Spots are mostly gone, although my chest pain keeps coming back, possibly from sitting up unsupported to use my laptop in bed?) So I supplemented, medicated the fever away, and rested, waking up in time to watch some of the Olympics Opening Ceremonies, which I love (can't believe it's my second Olympics here, incredible) and I think that was the key culprit. I adore seeing all those cultures together, in peace, and hearing the amazing stories. But this time, it also reminded me of all the dreams I've been forced to put aside.

Fortunately, by taking all the immune supplements I could, particularly, I believe , regular doses of ProBoost Thymic Protein (along with my regular doses of others) every few hours with my acetaminophen, by Saturday I was able to at least shower and do my hair. For some reason, despite the fact that I rarely ever put on more than eyeliner and lipstain lately, I decided to go the extra mile with my makeup, mascara, kohl eyeliner & smokey shadow, along with base and powder on the rest of my face. It made my eyes look so distinctly brown, and large, and so much like my mother when she was my age, and then I got silly and took pictures, because it seemed like such a waste that no one should see the fruits of my labor, despite the fact that I always roll my eyes at pictures of people taking pictures of themselves. I then wasted so much time on that, I tired myself out & didn't get to the store before closing. That's when the funk really began. I'm just so tired of not living. A couple of the pictures came out so well they didn't even look like me, really, but even the ones that look at me, you'd think there was so much potential. You can't see that I spend 75% of my hours in some form of physical discomfort, or that I'm ridiculously weak, sickly, and almost constantly tired. That's not me.
And I miss me.
I miss being strong, steady on my feet, and knowing if I really wanted to I could have a chance of having a 4 pack, being able to clean my home in one day without fearing the vacuum cleaner, and then go out for some fun after. I miss squeezing every bit of fun out of the summer sun & nights, being able to take advantage of living in one of the most fabulous places on the planet; going to the beach, the mountains, the desert, or the city at my pleasure. I miss working, feeling accomplished every day, having a paycheck to look forward to, and a future to plan for, and the knowing I could do anything I set my mind to. I want back all the years I've missed out on, all the concerts I've missed, all the making memories with my friends, being a part of my familes' lives. I can't believe I've been here, as if in some kind of time-out, for FOUR years, as if the previous few of grasping for some sort of normalcy weren't enough. I'm tired of life passing me by, sitting around with my mind running in circles, trying to find a way out of this state, grasping at ways to be happy and things to be happy about, being so willing to settle for some peace and tranquility, or at least, trying not to be miserable.

I watched the Olympic Cyclists, and I know in any life I never would have been one of them, but I'd at least like to be able to do more than ride my bike around the block in circles for 10 minutes, only to spend 15 on the lawn recovering, weak, and heart beating out control and be turned off trying it again until the air had gone from the tires from disuse.

And always, the sneaking suspicion slinks in, maybe I'm not trying hard enough. Maybe I'm so worn out from failing I'm not approaching things in the right manner. But I'm tired, and sometimes I feel like a wild horse that's been unskillfully broken; angry and fearful of everyone who approaches, completely out of control. And I envy all those young, dewy-eyed Olympians, all their hard work, their hopes, goals, and dreams. But I'm so worn out, I don't think I can even be properly angry about it...

Monday, July 16, 2012

POTS Links

So, I heard the other night on E! about this guy, Greg Page who had to quit the children's band (I have lots of cousins with kids, lol.) due to POTS, so went to read up about him, and found these two links I hadn't really seen yet! I especially liked the one for young people, and it was cool, because I'd been thinking I had to do SOME kind of exercise, spending wayyy too much time in bed, and gaining way too much weight & getting too weak. Then I checked that site out, & they had an article & a link to strengthening exercises, so I thought that was cool.

Dysautonomia Youth Network of America (DYNA)

National Dysautonomia Research Foundation

Oh, I believe the Wiggle's guy, Greg Page, founded one of them, and also very cool, he's mostly recovered and back to work!

My Heart is Sore

Or at least I think that's what it is. I'd noticed some weird feelings in my chest since I got sick w/the fever & rash dealio, a funny feeling, like itchiness in my chest, sharp little pains when I inhaled too sharply, and it made me wonder if it was possible to get the rash on my organs, too.

But even after I started feeling better, I kept feeling this random soreness in the left side of my chest, it felt like muscle pain, but as it persisted I realized it there was something weird about it; it was in the wrong place! Now, I used to have a really demanding track coach, and I took weight-lifting for P.E., in fact, I could bench more than my own bodyweight at one time, so I know what sore pecs feel like, and this isn't quite the same. It's in the wrong place, and it's almost like an itchy, scar-healing sensation, along with being sore. Actually at one point today, it was driving me a little nutty, and it also started feeling like someone stuck a balloon under my left breast and was slowly blowing it up, just really uncomfortable. Plus, I've been waking up with really bad tachycardia, the second I sit up the slightest bit, my heart is racing so fast I'm out of breathe and all I can do is lie there.

I have a feeling what made it worse was the vacuuming I did Saturday evening...the darn fleas seemed to be multiplying so I figured I'd better vacuum again, and I was soo proud of myself when I finished! I was drenched in sweat, and it felt SO good. I can't remember if my heart was racing then, or if I was out of breathe, all I cared about was feeling victorious. To top that off, I managed a shower, which felt wonderful after all that. And then I do remember noticing my chest feeling sore again. Yesterday, I woke up feeling like hell...then last night I had trouble getting comfortable , my chest seemed to hurt if I lay down sideways but I found it hard to breathe if I lay down flat, grrr. Today I woke up feeling possibly worse than yesterday, less sore, but very swollen and battered feeling. Sigh. I started reading up on myocarditis caused by infections (mainly Coxsackie B viruses, oh yay.) and it seems to fit...called my cardiologist & she wants me to see my PCP. Earlier, the thought of driving the 20 minutes to go there (had planed on going to pick up a form & some medication waiting for me there.) just made me want to cry, but hopefully tomorrow will be better.  I guess Viral Myocarditis is usually minor, and just requires rest, but I DON'T HAVE ANYMORE TIME TO REST!! I'm so tired of resting and, of depending on the kindness of strangers. But even worse, the treatment if it's more severe includes all these meds and a low salt diet. I already have to cut back on salt a few days a month, and it's hell, so the idea of having to do it longer almost makes me want to cry! Oh well. I guess I'd better just stay calm. At least, I got good news about my case when I called the SSA directly (had  It is being expedited and was sent to the department that can make decisions or send it to trial) even if I can't get any word from my attorney...

So I guess I'll just try & stay comfortable & calm & take it easy & hope for the best...

Friday, July 13, 2012

Spotted Chick

Gross!! But like a trainwreck...

Hand, Foot, & Mouth...& Diabetes?

Okay, will try and keep this short, because I think I feel that fever coming back again. It really doesn't like me being on the computer!

Well, like any 21st Century sickie, the Internet is my friend. And looking at my diseased looking legs, I really wanted to know more. I've looked up the Enteroviruses before of course, and Coxsackie B4 in particular, but I wanted to find a rash exactly like mine, and my memory sucks, so I wanted to refresh it on Coxsackie B4 and did some digging. Here's what I found:

This is a story about the children dying in Vietnam that has been on the news lately. I stumbled on it doing an image search. While the strain they're talking about seems to be Coxsackie A, I did read that Coxsackie B can cause the same thing, Hand, Foot, & Mouth Disease, and they do mention it:

The baby's foot (in the photo on above link) looks just like mine, I even have spots on the bottom now. And incidentally, I found out that it can be Hand, Foot, & Mouth w/o the sores in the mouth, but I did actually realize I do have a couple ulcerated spots in my mouth, I noticed because one, on the inside of my right cheek, has been there nearly two weeks, and I kept trying to get the Food-grade Hydrogen Peroxide/Aloe liquid I've been drinking on it to get rid of it, to no avail. (Usually that wipes out anything like that, overnight!) So that was kind of cool. Although, not because it's the kind of thing that makes a little voice in me say, HELP! Make it stop! But because it's visible. And I shouldn't have it (most people get it as children, and it doesn't become chronic) and basically, I JUST WISH SOMEONE WOULD FIX ME! :)

Then I found this, which I'd NEVER heard of and didn't like at all, especially since I had already concluded that some weird/different/new sharp pains I'd been having were my pancreas:

Yup. Apparently it has been found that Coxsackie B4
"can trigger an autoimmune reaction which results in destruction of the insulin-producing beta cells of the pancreas, which is one of several different etiologies of diabetes mellitus.
An absolute deficiency of insulin renders the person a type 1 diabetic."

Ahhh! I'd heard rumors that Diabetes was caused by a virus, I just had no idea it was MY virus! (Or rather, one of my viruses. If memory serves well, I have another strain of Coxsackie B and 1-2 of Echovirus as well.) I didn't even know Type 1 Diabetes could be acquired, I thought you were born with it . The more I learn, the more I wish the SSA were a person I could shake and say, "NOW DO YOU BELIEVE THIS IS SERIOUS?" Oh well. I absolutely refuse to get diabetes, but I do think I will start putting together an information packet myself to refute all their obnoxious little digs, suppositions, and false conclusions. (Say like, how my primary treating doctor is a published, respected researcher who is trying to make me better even if it's with alternative medicine because no FDA-approved medicine exists; my lawyer already said that wasn't kosher that they dismissed his input because they have to give treating physicians findings a certain amount of prevailing weight and they didn't.) Maybe I'll send them pictures of my pretty red dotted limbs and see if it helps. Even if they aren't that serious (usually at least) maybe they'll get a better reaction than my pile of medical records. I know they creep me out!

Thursday, July 12, 2012

Another Reprieve

So I got up  tomorrow yesterday (fog!) fighting the fatigue with every ounce of my being, because my friend was coming over to help me pack. I somehow forced myself into action, inducing a spell of tachycardia, which really doesn't bother me as much anymore as it used to, and right before I was going to call someone to get some more definitive information about whether there was any chance I might not have to move in 3 days, I looked up the sale date one last time online, and found out the foreclosure sale had been postponed, again, for another month! Same reaction as last time, simultaneous irritation (coupled with an urge to scream) and relief, or something like it. I still haven't sold any of my stuff, still recovering a bit from last week's manifestation of what I have concluded to be the Coxsackie virus, and exhausted from attempting to subdue a massive flea infestation...So gross, I actually vacuumed pretty much the entire place, fear of inducing months of pain and discomfort from my screwy back be damned. (Not only am I totally grossed out, as anyone would be, by the site of the dozen fleas that jump on my socks and legs everytime I got up to get something, but with my immune system so wacky, and knowing they can transmit parasites...eww. Not what I need!)

My friend was over by then, and bless her, she helped me vacuum again, and kept me company while I started the laundry (didn't want to risk any hiding bugaboos in my dirty laundry re-infesting the place.) Later, I went to the store, finally made it to my beloved TJ's before closing, and by the time I got home, I felt like every muscle in my body was spazzing out. (Unusually humid weather for Southern California probably also not helping.)

But thank goodness, I have time to rest now! I was annoyed yesterday because I finally felt like I had most everything figured out, and now have to re-work it all. I got my P.O. Box, had reservations for a truck and storage, most of my breakables packed...and the timing for going to visit my cousin worked out perfectly. ( A couple of weeks before her kids got home from visiting their father to rest up and get in a better mindset. I used to adore kids, and them me, but nowadays, they just overwhelm me, and I can't seem to get a handle on how to relate to them...but maybe it's just from lack of practice?) Oh well, we'll see how it pans out. I guess it will work out better, as I will have more money (provided I sell the stuff!) may not have to stay at my brother's before I leave, and have time to take care of business like getting to my rheumy for refills, make the county pay for my PT they are trying to weasel out of, talk to my attorney, and yell at Social Security about why they haven't sent my attorney their files yet (or whatever else I can think of that will make me feel better about their failure to make good on using my tax dollars to help me in my time of need).

Plus, this gives me more time to earn miles! Okay, first rest is priority, I'm horrible at it, and today I think I felt the fever coming back. I still look like an off-color spotted duck, and the spots had turned darker (and freakier looking!) are itching and sensitive to the touch now (almost like blisters). (I did manage to fade them a bit by soaking them tonight though...)

Also, my brother is talking about coming up with a plan to help me with my quest to get better, although it might have made more sense say, sometime in the last 4 years when I actually had a free place to live, but that's something...Honestly, at this point, all I want is to be somewhere stress-free and peaceful with the occasional person to make me laugh. I really think that would be the best medicine...

Monday, July 9, 2012

Spotted and still feverish...with strangers.

Yuck. Spots, spots everywhere.
(They look worse in person, but I gave up trying to do them justice.)

Taking a break. Just got back from escorting a nice Asian gentleman (I wish I could describe him further, but all I have are impressions, too dazed & tired) to the store to get change for a lamp that he bought from me. He'd come for my bed & fax, but changed his mind, and got the lamp, which I hadn't thought about selling, instead. And I didn't have change, so...we went to the store around the corner, and he told me there was something wrong with my car and described, pretty much, exactly what was wrong with it. (I know this, because I already knew all this.) Very warm fella, good energy, I found myself thinking as I walked back to my place. Then I realized my fever was back with the vengeance. I don't know if it's a prelude to delirium, that no one talks about because if they get delirious, they don't remember, or they don't notice cause they're home in bed, resting, but I keep finding myself in public, feverish (like, grocery-shopping & stuff...after a week straight of fever you have to go out for food & drink sometime) and it's kind of amusing, everything seems a bit unreal, and right now I want to giggle! (It's so much more amusing like this.) Or maybe it's a new defense mechanism... I just don't feel overwhelmed with stress anymore, just don't feel the stress. It still all seems crazy though. I lost an entire week in bed trying to get rid of this darn fever, slowly turning into a flesh and pink-dotted version of  a British dessert dish...And somehow I'm going to move this weekend (I think). Maybe I'm just okay because I have a plan now, or maybe I'm just too tired to care because I didn't realize that my nifty anti-oxidant acai-berry popsicles I've been slurping down to cool down give one energy and alertness one does not want at 4am when one wants to get up early...and I just need a nap. Ugh. Some new stranger is calling my phone and I don't want to get it, even though I swore I wouldn't miss another call because I really need to sell some of this stuff NOW...But I think I might get really, inappropriately giggly if I have to deal with another person who is very nice but wants my stuff for dirt-er cheap than I'm selling it...I swear, I'm not losing it. I'm just sleepy and feverish! (And spotty!)

This is what a Viral Exanthema looks like

Fancy doctor speak for a Viral Skin Rash. I just thought I'd share the eww factor.

Thursday, July 5, 2012

Feverish Ramblings

Well. I hope everyone had a Happy 4th of July! Myself, I had hoped to get down to the beach (a 15 minute drive that I usually don't have the gas to spare for, so a treat!) to see the amazing fireworks (from a picturesque little cove, waching the pyrotechnics reflected over & over in the waters, and the smoke gathering like in the canon fight in Pirates of the Caribbean at Disneyland) but I've spent most of the week nursing a fever. Low grade, only a couple of degrees mostly, but enough to make me nice & uncomfortable, alternating between either uncomfortably warm, or unreasonably chilled. Fun times.

On the other hand, maybe this is a good thing? I've been taking two immune modulating supplements called Inosine and Samento. For awhile there, I kept running out of one or the other, so last week when I got them both, I thought I'd be feeling better, but...nope. My suspicion and hope is that maybe the fever is a sign that they are working, that they've weighed heavily enough on the correct side of the seesaw that is my unbalanced immune system and the fever is, a sign that, as my doctor described, "the heavy artillery" are being ordered out to slaughter the infections causing such grief.  (I guess I should note that I also added some Anise Seed and Hyssop, the first for it's properties as a nerve tonic, and the second for it's anti-viral and stomach-soothing properties now that I think of it, maybe they are what finally tipped the scale?)

The bummer is, that I had A LOT planned for this week. An entire College-Ruled notebook page full. The first day, I really needed to go out and get food and load my monthly allowance from the county onto my Debit Card so I could at least pay bills online and reserve my storage and PO Box, plus get some food, and it was an interesting experience walking around the grocery store feverish and on pain medication, made me very jumpy, but I got it done. I was also having a lot of nerve pain, that scorpion-like sheath feeling on my c-spine, pain in the back of my leg and down to my right heel. The next day that was all gone though, and I found myself regretting the thought the day before when I was surprised that my stomach wasn't acting up at all...Severe cramping & discomfort along with the usual nausea and queasiness. And still needed to take acetominophen every 4-6 hours to keep the fever from going up. (Like it did Monday night; last time I had fever that bad was a few years ago when I had a kidney infection; it's hard to describe, this awful desperate feeling that makes you toss and turn without knowing why or being able to put your finger on what exactly is wrong; like a prelude to delirium, my brain started to feel odd and I wondered if I'd be able to get myself to the hospital, because come on, who calls 911 for a fever, right? Thankfully, I guess the acetominophen kicked in shortly after, and I suddenly felt calm and able to breathe, and my head didn't feel so tight, I guess the thermostat being turned down, haha.)

But yeah, what a pain in the butt! Any exertion and I'd start feeling feverish again. (Even being on the computer too long.) And now, I'm out of Inosine again, Samento is on it's way to being gone, and I just want to scream (because when I run out I also get sick, mostly stomach stuff). And I probably have to move next week. Also, I'd spent the weekend convincing myself that my cousin might get what she hoped for, and we would have a blast if I went to visit with her for a bit, because truth be told, I'm terrified that not only will I NOT be up for doing anything fun, but I'll be a crappy guest, and they'll end up not liking me. I mean, who am I kidding, I could barely keep up with the people helping me do my laundry and pack last week...I'd feel bad watching people do dishes & such and not helping, but there's a reason I needed help getting my own done...I get so exhausted being around people and trying to pretend to be well and not feel bad or awkward for having to sit or rest, I hate having people watching when I get up all stiff like an old lady. Have having to excuse myself to go lie down, hate this all. I wish I had the money to just go off to South America, rent a place to rest and be alone and maybe get a little better so I can deal with being around people better... $300 a month apparently is what it takes. I hate this situation. My brother offered to let me stay at his & his roommate's place, but only for a couple of weeks, not sure what difference that would make...(Well, maybe an airline ticket to get me further, got miles coming, but, I need cash, too...) I know this probably sounds crazy, maybe it's the control freak in me, or too many neuroses...sometimes I think this illness is also severely putting a cramp in my ability to not appear as crazy as I am, haha!

I wish I could go stay at a hospital somewhere, like when they sent chronically ill people or people with TB to sanatoriums in Switzerland or in warm climates back in the day to convalesce...don't they have those anymore? I'm pretty fearless, still, I don't mind going to a foreign country, but I'd prefer to have some extra cash considering how not well I am...I don't think I'm being pessimistic when I fear that I won't do well after the plane trip and need to stay in a hotel for a day or two or there before proceeding to find transportation to my destination... Maybe I don't have anything to lose, it can't be worse than staying here, spending what little money I have on motel rooms and ending up sleeping in my car and getting sicker...Back again to the conclusion, I just need to go. Somewhere. Anywhere. There's nothing for me if I stay, even if I found a place, it's not worth the misery, and I want to get away from the dysfunction...