Thursday, December 31, 2009


I'm tired. I was driving to my mother's yesterday and heard they'd be counting down the top 20 songs of each year of the entire last decade, and it hit me like a bucket of ice water. I've lost the better part of a decade to my chronic illnesses. And not just any decade, one of the most precious: my twenties.

I was diagnosed in October of 2002. Yup. Over 7 years now. I was 23. At the time, I was still convinced I had the world at my feet. I had no idea how much I was about to lose. My health, my job, and slowly, my identity and independence. I haven't fallen in love since that year. (And this from a girl who had her fair share of falling in and out of it in the few years since discovering it.) I haven't held a job more than 7 months. Worse, my life seems to have regressed so much that although at 23 I felt I was getting old and time was going by too fast for my liking, at 32 I don't feel anywhere near my age and I'm still struggling to remember that I need to look for wedding rings when checking out guys, and that it's perfectly normal for my friends, even my little brother's friends, to be getting married and having children.
Everything I planned and dreamed I would have achieved at this point in my life is so out of my reach it seems like those dreams were from a lifetime ago.
And no matter how much I try and reinvent myself, what I try to concede, or how much I try, I can't seem to get anywhere, and the last few months I've found myself slowly giving up in a million small ways, and I can't decide if it's for the best that I not try so hard, at least right now, or if it is the beginning of the end of me. Either way, I don't really care, because I'm tired of the struggle.
Still, some days, I wake up, and there's a small flame burning deep in my core that gives me life, makes optimism as natural as it once was, and convinces me that everything will be ok, that maybe there is some mysterious path waiting to unravel itself before me.
Sometimes, this lasts for days, sometimes it's just hours before I'm feeling like enough is enough already...and wishing for a way out.
So I'm not going to look back much; I've had worse years, emotionally, but physically, I've never been sicker, and I don't know what's worse; but I'm not feeling quite brave enough to look forward and hope, again, that this year will be better. Instead, I will do my best to live in the moment. And the next. And the next.

Happy New Year everyone.

Wednesday, December 23, 2009

Phoenix Rising Researcher of the Year

This was my favorite part of the article:

"Three of the six teams funded by the CFIDS Association smashed the normal boundaries seen in academia and research. The group studying inflammation and metabolism in the brain CFIDS Association Research Initiative is now collaborating with the group examining autonomic nervous system problems in the body. Then these two groups are handing off their data to a third group, which may have the most difficult job of all; analyzing both groups data together to create (hopefully) a model of inflammation/ autonomic nervous system/brain dysfunction in ME/CFS."

Tuesday, December 22, 2009

A Better Day

Today actually went pretty well. I finally got a chance to practice pacing, and I think it was helpful.

I woke up, drank even more water than usual, and had some salt. I lucked out, in that the laptop was forgotten today, so I got to recline in bed while checking my e-mail (I think sitting up at my desktop pc to do that yesterday is what did me in, definitely what triggered the tachycardia, possibly along w/hormonal changes).

I expected total madness when I hit the stores, but lucked out; I decided ahead of time that I was going to get a gocart, since I had returns to do and that involved standing in line, which kills me. (I don't faint, but I feel really, really ill if I stand in lines for even a couple of back gets really stiff as well, and hurts after just a few minutes.)

I lucked out though, no wait at Tar-jay, and I did do the gocart thing at WalMart, though I felt like a huge dork, all made up and healthy-looking, I got some stares, especially from peopole my age, and I could imagine what they were thinking, but I just smiled or looked away...and it worked, I got the stuff I'd been dreaded all taken care of and wasn't completely exhausted for a change; so nice!

I lucked out with parking, too, now that I think of it, it wasn't looking good, even the handicapped spaces were all taken at both stores, but I got great parking at both stores in the end...

I even made it to a 3rd store, and the doctor (though that was fruitless, as he wasn't there...) and was only worn out when I got home from carrying my bags and coats inside. I was planning on having a nice glass of wine, as a glass of beer had a great effect on me last week, but I ended up having to take a Neurontin for some excruciating cramping; even that worked out, it helped, and it didn't make me sleepy like I expected, perhaps just relaxed :)

I cooked up a quick egg dish for dinner, tidied up a tiny bit, and gave the cat a good, long overdue brushing, which finally did wear me out. It still seems ridiculous that such an easy task could wear me out...of course, I did have to do a little extra because of the allergies...brought the air filter in from the other room, and wore a mask (just the dander from petting her with my foot started my nasal passages swelling, soo...)

Ah, this all sounds so silly even to me, so mundane, but I'm so grateful. OH!
And I did realize a cool thing today, my brain fog is SO much better. It's like someone removed the cotton candy that was clogging it all up and everything runs smoothly...I'm not running around with my forehead wrinkled constantly trying to hang onto every thought lest it disappear before I was done with it. It was so incredibly exhausting! I don't know if it's a result of my social isolation, forced rest, Oxymatrine/immune modulators, or what, but I am so grateful.
I hadn't realized how much better it had gotten until I had a bad fog day a few weeks back and I just wanted to was so stressful, and every little darn thing was so difficult because I kept forgetting what I was doing, where I was going, what I needed to do or take to get there...and then it hit me that it used to be like that ALL the time, and I don't know how I lived like that...

I watched an episode of a TV show called "Fringe" last night; it's a Sci-Fi show, and this man who'd been in a mental hospital suddenly "went sane" after having something surgically removed from his brain, and he was describing how it felt, and he said, "It was just like ah, suddenly...Free..."
That's what it's like without the awful cognitive dysfunction, I can just think and do and function freely, without feeling like my brain is cramping up from the effort, everything's running smoothly instead of bumper to bumper traffic to hold onto and retrieve thoughts!

Yay :)

Monday, December 21, 2009

Finally found it: CFS & XMRV on Dr. Oz Show


A Not-so-good Day Post

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

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

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

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

Thursday, November 19, 2009

Why is it...

That I'm still surprised that folding laundry totally wears me out? My feet hurt, my legs are sore, my back is sore, I'm sweaty and out of breath (thought that might be my allergies, since the cat is in here). I'm exhausted, and it seems so crazy.

I asked myself the same thing a couple of weeks ago after a trip to pick up some groceries. How is it that something so basic wears me out? And then, how is it that I'm still surprised!?

I don't know...Maybe I just thought since I got a lot sicker for awhile, and even being on my feet was exhausting, that when I got better it would be better. But that doesn't really make sense does it? Because it was challenging before, too.

Sometimes I wonder if in that jumble of cognitive dysfunction there's some kind of disruption in the learning process. (I say this because I seem to also have a much harder time getting anything out of talk therapy's like i forget what I learn, so I can't apply it, whereas before it would all click and I could use it, apply it, for years.)

I've had FM/CFS for 7 years now; albeit I've had my ups and downs, but I can't seem to accept so many of my limitations, and I really think it's caused problems with adjusting to my new life... I've gotten better about some things. I use my handicapped placard. I even use GoCarts at the stores if I'm not feeling great. I've learned to ask for accommodations when I need them. (I went to a concert recently and was amazed when I investigated accommodations just how easy it was to get them and what was available, and felt so blessed that they made it easier for me to go and enjoy myself doing something I used to do in my pre-illness days.)

But I still feel guilty asking for help with a lot of things, I still have frequent barely subconscious wars about whether I am letting myself get lazy, or I should try harder. I grew up being a tomboy. I liked to play with the boys, did sports, like running, hiking, mountain biking...I always believed I could do anything a man could do. And now I feel like such a wimp! I can barely carry my own groceries, nevermind the laundry!

Anyone else experience these issues? How do you cope?

Wednesday, November 18, 2009

The Holidays, Interstitial Cystitis and the C-Spine MRI Mystery

Hi everyone! It's been a few weeks since my last post. Things are going ok. My spirits are holding up, though I do find myself slipping into apathy a lot lately. It's like part of me has said, "I give up!" Whether this is the development of patience, or the breaking of my spirit, I can't seem to tell! All I know is, it's better than the anger and despair I was experiencing before. So I'll take it.

The holidays aren't hitting me as hard as I far, but that makes me hopeful. I know what I'll be doing for Thanksgiving, Christmas is pretty much planned out, so at least I have that. :) Never underestimate the importance of friends and family to the chronically ill or disabled; if you want to do something great for them, just make sure they are included in your celebrations.

My Dysautonomia symptoms have improved. Palpitations are far more rare. I still feel sick at least half the time if I am fully upright for long, but that's way better than having definite feelings of that every single day. I've been drinking more water, having salt every day, eating potassium rich foods (Raisins, Roasted Seasoned Nori, Bananas. Chocolate covered bananas!)

I'm having way more trouble getting to sleep at a decent hour, which may be what has caused the cognitive dysfunction to return; I'm grateful though, to have had the chance to forget how awful it could be, having your brain twisted in knots as you struggle to try and keep with every little thing, from why you were walking into a room, what you needed to do next on the way out the door, or what you were in the middle of explaining.

I've developed a mean case of Acid Reflux. (I'd previously been diagnosed with GERD, but had been able to stay off acid meds using natural approaches and watching my diet, but it just got easier to take a pill; now I think it might be the Mobic I've been taking. It's supposed to be a Cox-2 Inhibitor and closer to Vioxx and Celebrex than to Motrin or Naproxen as far as causing stomach problems, but not quite, so...)

I've also been diagnosed (pending a cystoscopy to make it official) with Intersitital Cystitis, which I'm no stranger to, having watched my mother suffer from it for over a decade; fortunately, I have a far milder case. It's still uncomfortable, causing me pain and bloating in my lower abdomen/pelvic area, and pain and pressure in my lower back. I really lucked out with the specialist I saw, she was the kindest, most patient, knowledgeable, and reassuring doctor I've seen in ages, and I'm not really too upset about it.

I had an MRI of my C-Spine done a couple of weeks back, because of steadily increasing neck/shoulder pain and muscle atrophy in my trapezius area, and nerve pain down into my fingers, and am still waiting to find out the results, though I do know the doctor is referring me to a neurosurgeon. Hopefully I can make it by to see the doctor tomorrow; I went last week specifically for that, but they forgot to get the results, so all I got was a message from his nurse saying he looked at them and was referring me to a Neurosurgeon! He can't call me for some reason, so I have to go in person...Kind of freaked me out for a second; I knew I had a bulged disc, and expected to get referred to an Orthopedist, but Neurosurgeon?!? But I after some Googling I found out it might not be much different. Besides, maybe they'll finally do a proper Neuro exam, and once & for all note all the funky little differences my other doctors have noted. (Pupils that don't react quickly enough, hyper reflexes, balance problems...) Who knows, maybe something's even getting pinched back there that causes the Dysautonomia, and either way MRIs are not subjective, so the SSDI judge has to take them seriously.

So that's about it for now...

Tuesday, October 27, 2009

XMRV and XAND - Are We Jumping the Gun?

Well, well, well. As you probably all know, earlier this month, it was announced that a new virus has been found in a large percentage of the CFS population. It has been named XMRV, for Xenotropic Murine leukemia Virus-related virus and "is one of three infectious retroviruses known to infect humans." (For more info see: )

Okay, so I can see why that is a big deal. CFS being linked to a virus of the same sort that causes AIDS, a retrovirus. Granted, that is news. But how big is it? And what does it mean?

In the past 24 hours it has been announced that there is now a test available for XMRV.

It costs a mere $399.00 US, and is not likely to be covered by insurance. Still, very exciting, right?

Well, I thought so, but after reading all the FAQ on Cooperative Diagnostics website (see link above) I have to ask, "Why?"

It seems to me that getting that test now would be nothing but a waste of money. Why?
Well there are a few reasons.

First, XMRV has NOT been proven to be the cause of CFS. The same thing has been presumed to be true in the past for Enteroviruses, Cytomegalovirus, HHV6, and Epstein Barr.

This makes me feel like the CFS community is being exploited, yet again, with hopes for not just with the hope of a surefire, scientifically proven diagnostic test, but a cure, even though the FAQs on Cooperative Diagnostic's website is careful to cover their backs, the propaganda they are building around all this seems aimed at toying with the vulnerabilities of a group of very sick people looking for a shred of hope to hang onto, despite the number of disappointments and dead ends of the past 20 years.

I'm not saying that the XMRV is absolutely NOT that hope, but I do believe that it is far too early to be dangling the type of promise that the researchers seem to be holding out at the moment.

I know this all too well, personally. I was very excited when I first read the news. And, ironically, the specialist who is treating me for CFS had just prescribed me an AIDS/Hepatitis medication. To my chagrin, it is not covered by my insurance...I searched for programs to reduce the price, and as I have in the past, discovered once again that if you have AIDS in this country, you will be taken care of. There are all kinds of organizations, some even government subsidized to take care of anything an AIDS patient could need, from medication, to food, and housing. That's right. I discovered that if I were an AIDS patient, I'd be so much better off than what I am, as a CFS patient. Therefore it came as just validation when I came across the NY Times article where Dr. Nancy Klimas states that if she had to choose, she would choose to be an AIDS patient over a CFS patient. (

It is one thing for this group of researchers to release this information, or rather, release information about the potential of the research they are doing, but quite another for the lab to release a test. To me, releasing a test that does nothing but prove someone has a virus that may only hypothetically cause CFS is as bad as any of the quacks out there selling their protocols, herbs, and "promising" treatments to the desperate masses with illnesses such as CFS and Fibromyalgia. Especially at $399! Why would anyone thinking logically shell out so much money for a test that is not going to help them in the least, at least, not at that moment?!? The only reason I can think of, is what I've already mentioned. That their emotions have overtaken logic, because their weaknesses are being played upon by yet another money-making entity disguised as a helping hand. (I mean, come on, they've gone ahead and created a whole new name for a group of diseases,[XAND] just on the basis of this research? Am I missing something?)

So I don't mean to be a killjoy, but I'd like to remind everyone to exercise caution, and not get their hopes up -- just yet. Yes, this could be big. It could mean that it will be accepted that we have a serious illness caused by virus of the same caliber as the one that causes AIDS, and that very soon all our suffering and struggle will be validated and there will be a definitive, widely accepted and scientifically indisputable way to prove we are as sick as we have been saying all these years. People will take us seriously, we won't have to defend ourselves against doubt, Disability Insurance will be granted to those who need it without having to jump through years of bureaucratic hoops, and best of all, people will start to care, and research will move forward to find a solution for us to take back our lives, if not be cured. OR it could prove to be just another opportunistic infection, one more medication to take, one more hope dashed.

As for me, I'm not losing hope, but I'll not be taken advantage of again or have my hopes raised until they should be.

Friday, October 23, 2009

Sometimes I so want to go all Buffy the Vampire Slayer on CFS

That's how I felt today.
I just had a compelling urge to karate-kick CFS. But, unfortunately for me, it's invisible! And not only that, it's an illness, so you really can't, I mean, maybe if it was Cancer or something, you could remove a tumor, put it in a jar, and do it, or the karate-kick could take the form of radiation or chemo, but, that's probably not gonna do much here.

I guess I was just upset. I needed to do some research online, and my father wasn't home with his laptop, and my body was sending me the really annoying, barely perceptible but extremely insistent message that I should lie DOWN! ASAP! And I was trying to keep on doing what I was doing, but I couldn't focus, and I kept feeling worse. That's Orthostatic Intolerance for ya.

Grrr. Finally, very frazzled, I got up and lay down. But the frazzled wasn't going away, and I just kept wanting to karate-kick SOMETHING. I couldn't hold still, and I was just so frustrated. Finally a little desperate and unable to lie still, I put on some meditation music.

That has been my saving grace lately, meditation music. Something about those frequencies of sound seem to penetrate and resonate deep within me, and smooth out all the chi that is wrinkled, depleted, or bouncing off the wall. Okay, so I may have taken a Xanax as well. It seems to be a typical thing with me. I get worn out, and I know the only thing that will help is rest, but my mind is still bouncing off the wall, and I can't rest, I keep thinking of things I wanted to get done, or feeling like I should be multi-tasking. Being productive used to be my favorite thing, what made me ME. And now it seems it just drives me slightly mad. Or maybe it's what keeps me going? I can't seem to decide. This week, it seems like I've gotten a whole lotta nothing done. I can't seem to focus. And then, I get tired before I've managed to redirect and refocus to get anything done...I was feeling a bit better after laying there, listening to the music, half conscious, for who knows, an hour or so...

Then I went to the doctor. This doctor, he drives me crazy. I go in, and he asks me what I want him to do for me, like seriously. Not like, "Hi there, what can I do for you today hun?" But I tell him what's wrong, and then he asks me, "Okay, so what would you like me to do?" "Umm, I I was kinda hoping YOU could tell me that?"
(I had a UTI.)
Last time I was there, because he told me to follow up on some test results (for the third week in row, they'd always mess up, or not do them all, or...) And he asks me, "So what medication would you like refilled?"
I look at him, kinda confused...
"Vicodin?" he offers.
I tilt my head and look at him, and say, "'s okay..."
(Did I mention when I went online to check this guy out, there was a blurb from someone saying how he seems willing to give out prescriptions like candy?) I only went because he was one of only two doctors locally who take the County Sponsored insurance plan I'm on...and I already didn't like the other one. Her English sucked.

So I'm thinking, okay, so everytime I go he wants to run tests, take the same x-rays over and over again, and he offerred me Vicodin and I refused. So the last thing I figured I'd have to deal with is him accusing me of drug-seeking...

Well, not quite that, just when I asked him for the scrips, he told me these drugs were addictive, and if I wasn't already I would be addicted to them, and didn't let me get a word in edge-wise until he asked me what I would do if he didn't give them to me...(I'm going to a concert tomorrow, a very big deal for me, and one of the situations where I just take medication because I KNOW I'll be needing it...I rarely take hardcore pain killers when I'm at home, mainly, I use them for when I have to go somewhere, which is why 30 pills last me about 3 months...Normal dosage is 1 every 4 hours, and if I take 2 in one day it's a rare occurence, last time, it was pain from the UTI that wouldn't leave and only after Tylenol ceased to cut it.)
Haha, so do I sound defensive already?

You bet. I live with an illness nobody understands and that (at least at the moment) is invisible to the eye of any casual observer, but that a specialist was quoted in the New York Times as saying that she would prefer to have AIDS than have, because her AIDS patients are healthier than her CFS patients, and most of them can work and have a normal life, while the CFS patients mostly can't!

(Incidentally, I have to agree...If you have AIDS there are so many programs, too. Programs to give you medical care for it, programs to help you pay for your medications, programs to give you a place to live...and if you do get full-blown AIDS, I don't really see a Disability judge turning you away, saying you are too young, or your doctor is being overly generous in his assessment of your disability. So...)

Okay, sorry, this is beginning to sound like a whine-fest. I said I got defensive!

Everyone's going all crazy about this XMRV virus...but at this point I'm afraid to even get my hopes up. Besides, I already know I have another virus, and I can't get the medication for THAT, because I can't afford it. Incidentally, it's an AIDS and Hepatitis med. And if you have AIDS, and can't afford it, they'll hook you up. But if not, you're outta luck.

As for my doctor, I explained to him that I hadn't taken the Vicodin in two weeks, and hadn't experienced any withdrawals, plus, 30 pills lasts me at least a couple of months, and the other med, I take only at night and have gone without for 3 nights, at worst, I got to sleep a bit later, and if he liked I could bring in my medical records so he could see that I take them only as much as I say, and call my previous doctors. Grrr.
How ironic that he was offering me pain meds I didn't need last time!?!
Thank goodness the other reason for my visit was to get a referral to a Rheumatologist! (He looked surprised, asked what for, and looked surprised again when I said, "Because I have Fibromyalgia..." Yup. Seriously. That's why I took my records with my original diagnosis of FM from back in 2002.)
They can take care of all my meds, and hopefully I won't have to go back there for a VERY long time! (Fingers crossed.)

I so wish I could go in that mosh pit tomorrow. Concerts used to be such a release for me...Ah, well, I'm just happy to be going :)

Saturday, October 3, 2009

Pace Yourself

Easier said than done right?

Well for me, this has been a huge issue lately. I guess I crashed a couple months back, kinda have to face it, now. It seems odd, because I never seemed to crash like most people with CFS & FM do. If I really pushed it, I might be out of commission for a a couple days, a few at most, and rarely. (Unless you count the 3 occasions when I crashed after going back to work for a few months.) This time, it seems endless, and I'm being faced with the fact that I'm NOT going back to normal anytime soon.

Monday, it took just a trip to the drugstore and browsing through their clearance items, and looking for a supplement to set me off into a downhill spiral. By the time I was on the way to my car, I was feeling woozy, seeing spots, sweating, heart was racing, out of breath, and I'd be willing to bet my blood pressure was plummeting. I rested for a couple of minutes, and unwisely talked myself into going to the next store. I ended up lying down in the car for about 30 minutes, went in, and barely made through the checkoutline before I broke into a sweat and collapsed into the car again. Tuesday I felt like hell. The next days were better; as long as I did next to nothing. Any activity (even getting dressed) left me breathless and weak with my heart racing and exhausted. My blood pressure was having trouble staying up, and the head rushes were getting so persistent that I started getting headaches.

Today, I was frustrated and a bit depressed, and finally decided, screw it. I'm just going to stay in bed all day! (After a brief sojourn on the living room recliner w/the laptop.) I was upset, but finally, after a good free-write and some soothing meditation music, I gave in. It felt good, and I ended up embracing it. I started thinking, hmm. Maybe this is what the doctors meant by resting...Two doctors have told me that. Take it easy. REST. I'm not good at resting though. I feel guilty when I rest. (I think I possibly feel guilty for being alive if I get nothing "useful" accomplished, but...)

Then I read this article titled Find Your Limits - How to Put the Push-Crash Cycle Behind You.
Just the title intrigued me, because I've often lately come to the realization that I don't KNOW how to pace myself, I can't get a handle on it, because I keep trying to be normal, but I HAVE no normal these days...

This article makes things far clearer though; it really makes a lot of sense. Apparently the author runs a website and has courses on pacing and dealing with Chronic Illness. They're not free of course; but if it can help me get a handle on things...maybe it's worth it.

Hmm. I had a realization. I feel kind of ridiculous doing nothing. I'm trying to get over it. Just to see. (Or maybe it's my way of saying SCREW YOU, I can't do what I want, so I'll do NOTHING!) It's occurred to me that maybe part of me doesn't believe I'm sick, because people around me don't seem to (and maybe that's the answer to all the questions I've been asking lately?).

Gene Responsible for Chronic Fatigue Syndrome Identified? highlights important research at University of Utah

Wow! I can't believe it...

MCS America article Gene Responsible for Chronic Fatigue Syndrome Identified highlights important research at University of Utah

Is this as good as it sounds?

Friday, October 2, 2009

What's a girl to do?

Lately, I have a gnawing suspicion that everyone is just tired of hearing about my health. In fact, I'd be willing to bet on it. I just don't understand what I'm supposed to do. It's my life. It's all there is. What can I do? Social networking sites have become my lifeline. That quote "I love my computer because my friends live in it"? Totally applies. But I worry even there I've become tiresome.
I have been really, really, REALLY sick the past...WOW: THREE months. One thing after another. My immune system is shot, adrenals are fatigued, can't fight infections well so they recurr...I've been all but housebound, and mostly bed or couch or recliner-bound. It was HARD at first, because what caused me to crash is that I had been getting back to normal. Driving to my hometown to see my friends and take care of business1-2x a week, exercising 2-3 times a week, getting stuff done in general...I was going to bed actually sleepy, and it was wonderful. So it took some adjusting to go back to being even worse than I had been. But then I got even sicker and I had no choice. Resistance was futile. I gave in to lying around, playing MMPOGs, watching lots of shows online, sleeping in, and Googling to my heart's content.

At one point though, I was having a really rough time. I asked my "friends" to come visit me, but they were too busy. I even practically begged my brother to come over for a day or so and just hang out. He didn't. I know I'm a bit needy. Hell, sometimes I feel like I'm on the verge of becoming a basket case. After awhile, mostly to protect myself from further disappointment, I gave up. But today, I texted a friend about something I saw on TV that I thought she'd want to know. She answered, asking me where I'd disappeared to, and I told her, I've just been home, sick. I'd start to get better, then get sicker. I have a suspicion that she's one of those people that is not good at sympathy, and she was sick of hearing about my being sick, which I expounded on at length after a drink too many a couple of times. (I've known her for 5 years, I figured it was safe.) And she despite my attempt to deflect my answer with a question about her, she never answered my text. I don't know why, but I can't bring myself to just lie, make up some bogus excuse...I'm not a good liar, and what's more, I don't like doing it. Besides, it's bad enough going through all this, but then being forced to put on a facade and lie about it? It's like it gives it all more power over me...saying everything is fine or making up some other lame leaves a numbness behind, I feel empty, and if I'm really unlucky, it's like twisting a knife in my heart. It's not enough that my life feels like a living hell, but I'm supposed to help people who don't give enough of a damn about me to help, I'm supposed to make them feel better about that?
Not to mention, the last time I did it because I honestly just didn't want to get into it...I almost burst into tears. My eyes got teary as I mustered a tight, brave little smile and looked away to avoid eye contact. So seriously, what do I do? Nothing I guess. Just play more online games and try and keep it from eating me up inside. It's not working as well though, and I'm not sure how much longer I can take sitting around here, isolated. I've started having one-sided conversations with my cat and the TV. lol.

In other news, my hair is falling out at an increasingly alarming rate. Not only is it everywhere, but now all I have to do is run my fingers through the end of my hair, gently tugging on a few strands, and anywhere from 1-2 to a half dozen strands come gliding out I can do it again and again, and at least one piece comes out, and again, and again. Not even from my head, it seems like they've been lying there, tangled in the rest of my hair, waiting to come out. It seems like I'm falling apart, from my hair down to my toes. (Earlier this week I could not get my legs warm, had to put on thick socks and leg-warmers. My stomach has been acting up, my heart rhythm is too fast, blood pressure is low, memory is bad, and now the hair...)

I'm tired, and beginning to feel invisible, and wondering how much longer this is going to go on. But for now, my night meds kicked in, so I won't really care for awhile.

Monday, September 28, 2009

Mystery Diagnosis Dysautonomia Episode: The Woman Who Kept Falling Down

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

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

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


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

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

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

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

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

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

Discovery Health :: TV Listings :: Mystery Diagnosis

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Tuesday, September 15, 2009

Article: When Working No Longer Works

This article struck home big time. I went back to work 3 different times after being diagnosed. I hadn't realized how much of my identity and self worth were dependent on my job until I couldn't do it. Especially when it became apparent that I was only hurting myself by continuing to try.

Also, to add to the identity crisis, I had been determined to be financially responsible and successful...I had just gotten my first solo apartment, and was a little over a year into my first car loan.

I still struggle... I can't reconcile myself with being poor. It's not what I envisioned for myself, and it's VERY stressful, having to try and juggle things I need and stretch dollars, and most of all, feel constantly deprived of things most people my age take for granted; going out with friends, buying clothes, the newest techno-gadgets...I'd also hoped to travel...Instead I'm juggling prescripton prices, and drowning in copays and other medical expenses.

Instead, I find that my twenties have slipped away, and, far from having bought my first home, I've moved in with one of my parents, in a new town, far from the friends that helped make life with chronic illnesses bearable. Not to mention that instead of getting better I'm getting worse...

And to top it off, I get to put up with people judging me. I had one aunt imply that I moved in to take advantage of my father. My own mother told me to go back to work, because it's okay for her to be disabled because she's of retirement age, and when I've had the gall to ask for help cleaning up, my father told me it's all in my head.

I'm finally beginning to understand that I can't expect people to understand, not my illness, and not my not working. Why should I care anyhow? They weren't there when I made the decision to stop, hoping it wasn't too late to prevent another crash. They weren't there when I tried to act like it was okay because it was the only sensible decision to stop banging my head against a brick wall. They don't know that despite my outward non-chalance, I took a nosedive into a deep depression, or the panic I felt at the uncertainty of my future, so much so that I actually got even sicker after I stopped working... They don't know, and I'm tired of trying to explain myself.

Agh. Sob story, I know. I'm trying to get more positive, I swear!

So anyways, here's a great article from the blog, I feel for the author, but at the same time, it's good to hear someone describe something I've been through...

ME/CFS & Fibromyalgia: When Working No Longer Works :

Apathy and Houseguests

I've been feeling so worn out lately. Not just physically, but spiritually as well. I'm maxed out on Zoloft, but I think I may still be depressed. It's weird, there's no rhyme or reason to it...Friday I had to lie down about a dozen times or more before finally being down for the count. (Dysautonomia I guess, still waiting to find out if it could actually be a Thyroid disorder; my T4 came out low, BUT I was having all the symptoms of HYPER-thyroidism: rapid heartrate, hair falling out 10 times worse than usual, gaining & losing weight rapidly, being too hyper to relax even though i was burnt out, dry skin and nails...I checked and it is possible to have both if you have a Thyroid Disorder.)

I got up this morning, and for the life of me, I did not feel like doing anything. I even skipped my meds, which I usually take the second I get up. I can't handle being completely useless though, so I went & took them, made myself breakfast, & after a break, took a shower. So much to do around the house, but I got overwhelmed just thinking about doing anything, so I decided it would be enough just to get myself past this dip and keep myself from falling further into a funk.

I ended up just feeling stressed out. I thought of driving to the beach, taking an impromptu trip to see my peeps in L.A., but in the end, all I ended up doing is dropping off some books at the library, and picking up a few things at the dollar store.

I had spent some time on the computer, but the ergonomic mouse I borrowed from my Dad sets off my tricep pain, which totally stressed me out, too much fighting going on...fighting to keep my mood from falling, fighting my body wanting to lie down, fighting to ignore the pain and concentrate on the other two, while cajoling myself into doing something productive.

Things seemed a little better after I got home though.

And then I was having a nice conversation with my Dad, and he springs on me that we are going to be having a houseguest next month. I knew that, and I was warily looking forward to it. (I don't know if this person likes me much, and I wasn't sure I'd be able to be a very good hostess...) I LOVE being a hostess, and hardly ever get the chance to do it. But on my own pretty much? This was going to mean getting up at a decent hour every day, making breakfast, cleaning up...Stuff I barely manage for myself, okay, actually, don't manage very well at all...but still, I was willing to try. I'm dying for some company, and have been dying to get to show people around my new county...It gorgeous here and I love sharing it...and unfortunately, haven't gotten the chance to do it yet, really with any of my closest friends or family because a 40 minute drive is just too much for them...(That's another story though.)

Then today I find out it's not going to be a couple days to a week, like I'd assumed...but possibly 2-3 MONTHS! WHAT?!? And no one thought to ask me if I could handle this? WTH? I explained the drawbacks to this for me...I'm one of those people who needs alone time to recharge, even before I was sick. Plus, well, I have a hard time seeing people when I'm feeling really bad...I mean, lately, I've often thought about what I wouldn't give to have someone visit me, especially on days when I'm practically glued to the bed...but unless I was violently ill, I'd have to make sure the place was relatively clean and tidy, and even if I was violently ill, I'd probably put on a fresh pair of PJs and do my makeup, make my hair presentable, if only in a ponytail...

It's this bizzare personality quirk I have a I guess...I don't mind telling people all about my illness, but I don't really want them to see it. It's like a dirty little secret or something. I just feel very self-conscious, most of all when I'm in pain. Then there's all that guilt, too. I don't want people to feel sorry for me. Sympathy, kindness, and consideration would be nice, but pity, no. And I feel weird asking for help, or letting on that I can't handle something that I know shouldn't be a problem for someone my age...I feel like they'll think I'm being a baby and presume I'm lying. (Which has been known to happen!)

So anyways, the idea of having a houseguest for months seems pretty overwhelming. My Dad says there are other alternatives, but now I already feel like the bad guy. One more thing that I should be able to do that I can't.

Well, hopefully he'll handle it tactfully for once. And who knows, it might end up being nice to have company...either way, I'm a little nervous about the whole thing...but I guess it's too late now...just amazes me that none of these problems were taken into account, I wasn't taken into account, or consulted on the matter...

I have GOT to start looking at affordable housing apartment complexes & got on their waiting lists. The second I get my SSDI approved, I'm out. The fewer stressors I have, the better, so if I can be free of my dysfunctional family dynamic, that would be GREAT...

Saturday, September 12, 2009

Cuddle You!

Absolutely adored this story, it's so true about the effect a doggie can have on you, even if they're not specially trained to help or offer soothing portable heat!

The Cuddle Cure

Friday, September 11, 2009

Fun with weird symptoms...

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

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

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

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

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

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

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

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

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

Saturday, September 5, 2009

Love this Animated GIF: Get involved with Invisible Illness Week!

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Chronic Fatigue Syndrome/Chronic Enteroviral Infection, Dysautonomia, and Endometriosis.

2. I was diagnosed with it in the year: First two in 2002

3. But I had symptoms since: Major since 2001, less severe since pre-teens.

4. The biggest adjustment I’ve had to make is: Trying to accept that I am not the person I used to be, not being able to work a regular job, and dealing with guilt.

5. Most people assume: That just because I can wear makeup, dress nice, and take a pain pill right before any social events, I must be fine the rest of the time.

6. The hardest part about mornings are: Dealing with temperature extremes and morning stiffness, needing time to let my body/blood pressure adjust to being upright.

7. My favorite medical TV show is: Grey's Anatomy, lol.

8. A gadget I couldn’t live without is: Computer. Keeps me connected when I can't get out.

9. The hardest part about nights are: Feeling better and then having to go to sleep.
10. Each day I take 10-15 pills & vitamins/supplements. (No comments, please)

11. Regarding alternative treatments I: Wish I could afford them because they really help!

12. If I had to choose between an invisible illness or visible I would choose: Visible. It's so hard to ask for help or get it when you look fine.

13. Regarding working and career: I still hope to be able to support myself one day.

14. People would be surprised to know: How much I struggle every day, and that my mind is always running even when my body's exhausted, so I have a hard time doing nothing...

15. The hardest thing to accept about my new reality has been: Not knowing how I'm going to feel, what's going to be acting up from day to day, and not being able to work. It's driven me half insane!

16. Something I never thought I could do with my illness that I did was: Build physical strength. Hopefully I can figure out how to keep it.

17. The commercials about my illness:Get on my NERVES really bad! The way they say Fibe-roe-my-AL-gee-a makes it obvious they don't have it...the CFS ones are good tho.

18. Something I really miss doing since I was diagnosed is: Being able to do anything I set my mind to. Again, WORKING. Going to concerts, too. In general, independence and self-sufficiency.

19. It was really hard to have to give up: My jobs. My apartment. Life as I knew it.

20. A new hobby I have taken up since my diagnosis is: Blogging.

21. If I could have one day of feeling normal again I would: Do something really physically demanding. Of course, then I'd have to have a couple more days cuz the next days I would barely be able to move...

22. My illness has taught me: That life isn't fair. The need for patience (which I'm still not good at.) That I must've really screwed up in my last life! lol, j/k.

23. Want to know a secret? One thing people say that gets under my skin is: "But you look so good!" I don't mind hearing I look great, it's just the BUT part.

24. But I love it when people: Are understanding, come visit me, especially when I'm stuck at home.

25. My favorite motto, scripture, quote that gets me through tough times is: That a flare won't last forever.

26. When someone is diagnosed I’d like to tell them: It's going to be hard work getting better, and staying that way, but never give up.

27. Something that has surprised me about living with an illness is: How unkind, self-involved, and judgmental people you expected better from can be. But also how amazingly kind strangers and people you didn't expect can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: Help me clean my apartment, secretly pay a doctor's bill so I could refill my medication which is was miserable without.

29. I’m involved with Invisible Illness Week because: I don't look sick, but I am, and I feel like I get judged unfairly a lot.

30. The fact that you read this list makes me feel: Grateful, while at the same time, fearing rejection, lol. I feel like I'm expected to somehow be graceful and inspiring about all this, but I'm not a Lifetime Movie actress!

Thursday, September 3, 2009

Anger, Guilt, and Why having to ask for help SUCKS

I'm so mad right now. It's comforting, in a way, because my heart has been beating too fast for a couple of hours now, and getting worse, but at least if I'm angry it feels like it's supposed to be beating fast and it isn't as worrisome.

One of the things I hate about being sick, is that no one seems to understand. Even the people closest to you.

I've had a really rough couple of months. Right as I was feeling better, exercising regularly, able to push myself more, get more done, I crashed. Orthostatic Hypotension up the ying yang (low/dropping blood pressure when upright)and POTS (Postural Orthostatic Tachycardia). My heart was hammering away. Scarier still, I started getting these muscle tremors. They wouldn't settle down unless I lay down, flat, for an hour or so. Shaking & weakness, all over. Having to will my hands to do things like reach and stay closed...scary. About a week into that, I got a killer stomach flu (or flare-up of the chronic one I have hiding in my body according to a certain doc) that lasted almost two weeks. I lost 8 pounds. Once that was done with, I ended up with a UTI turned Kidney infection, which is soo not fun when you have CFS and all the other problems...Fever, pain in the lower back, front...

I got depressed as hell. I'm VERY bad at lying around doing nothing. The fact that I'd become so much more active right before made it almost unbearable to have to sit at home alone for weeks. I got so bored when I was even slightly better I took to cleaning. Then my doctor yelled at me and told me I just needed to REST.

Rest? I thought? Ha! I was so sick of looking around and seeing everything a mess. If I had money, I'd hire someone to come clean, but I don't. At that point, I could barely manage to cook. I had to sit down, my heart was pounding so hard I was getting out of breath, and I was getting dizzy just walking around, and I'd sit at the stove, stir, go lie down for a few minutes, and repeat. I managed to serve my Dad, but then was too wiped out to serve myself or eat. All I could do was lie down, close my eyes and focus on breathing. And how did that make me feel? Embarassed, and apprehensive, because my Dad was acting like nothing, which made me feel...well, how could you ignore someone obviously feeling so unwell unless you think they're faking it or something?!? I suddenly felt like a kid again, waiting to get yelled at. That's how I've been feeling a lot lately, when I need help with something. I'm afraid to ask. I told myself it was silly, but...

And tonight that's how I ended up feeling.

I'm sick. I need help with the cleaning. When I had my own apartment, it was a disaster. I hated it, but I was too busy trying to keep a roof over my head to waste time beating myself up over it. Life was beating me up enough. Towards the end, I was too tired, or in too much pain, or just too plain overwhelmed trying to study and keep up with the odd jobs I did to make ends meet, and dealing with getting through each day. My Dad lived with me for a short while until I got evicted, and I thought he understood how much help I needed. But apparently not. I've been begging him to get someone to come clean, and he keeps insisting we can do it, and if the pain was keeping me from doing it before, well, now, with all the blood pressure problems and the heart issues, I REALLY can't. I probably shouldn't. I was still going to try today though, because I'm stubborn like that. Earlier today I felt the best I've felt in weeks and I was dying to clean, but I ended up realizing I needed to go to followup with the doctor today.

Okay, I'm not going to rant and rave anymore. My point is, it just SUCKS. It was so hard for me to sit around RESTING, it almost drove me nuts. But I ended up so weak, and miserable, I realized I had no choice, but I still had to make a conscious effort at it. At relaxing. And now my Dad is yelling at me about lying around watching TV instead of cleaning just because I asked him if he could please help clean up the kitchen because there were ants. (I took care of the ones that were overrunning the living room area over the weekend, as well as the ones in my bathroom). He blew $40 taking us out to eat, and if he had that money to blow (which he probably doesn't, now that I think of it, but he did) maybe it would have been better spent using it to hire someone to clean? I've been asking him to vaccuum for 3 weeks now...we have a really old one, and it's hard for me to push around, and I have allergies, so it really shouldn't be more than a week between vacuumings, and he keeps putting it off. Sometimes I feel like I'm living with my little brother instead of my father...trying to coax him into doing something as if it was a big favor to me, and not his own house!

So, why is it SO hard for people to get that I'm sick? I guess he's in his own little world and doesn't realize that I have to lie down about a zillion times a day...I don't do it cuz I want to, you'd think he'd know how stir crazy I am and that I'm always doing something when I feel well enough...But lately I literally feel sick if I'm upright too long, and it progresses from sick, to tense and painful, vaguely anxious feeling, to muscle tremors, dizziness and a heartbeat of up to 134 (earlier this week)and breathlessness if I don't. Week before last, w/that and the kidney infection, I could barely manage to get myself something to eat, but not once was I even asked if I needed something even...

Times like those, I have to keep myself from asking what would become of me if I stayed as sick as I've been these last weeks, because I seem to be all on my own, as much as I was when I lived alone. It's just as hard to ask for help, and even if I dare, as tonight showed, it's even worse trying to get it. I just don't understand it. I never imagined this would be my life. In my worst fantasies, even if I were to get ill, there would have been people to help me. In reality, people are scarce, and indifferent. Maybe that's why I have so much guilt, and have such a hard time accepting the full gravity of my health issues and sticking to that acceptance. The objective thinker that I am figures, if no one else believes I'm that sick, it must be in my head...I have to try harder, there must be something I'm not doing something right, I'm not organized enough, I'm not determined enough...I'm just not enough...And I start to wonder if the reason I feel myself so abandoned is just that I'm somehow not worthy of anyone's love or attention or care...

Monday, August 24, 2009

Adrenal Fatigue

Sound familiar?

Symptoms of adrenal fatigue:

* Morning fatigue -- You don't really seem to "wake up" until 10 a.m., even if you've been awake since 7 a.m.
* Afternoon "low" (feelings of sleepiness or clouded thinking) from 2 to 4 p.m.
* Burst of energy at 6 p.m. -- You finally feel better from your afternoon lull.
* Sleepiness at 9 to 10 p.m. -- However, you resist going to sleep.
* "Second wind" at 11 p.m. that lasts until about 1 a.m., when you finally go to sleep.
* Cravings for foods high in salt and fat
* Increased PMS or menopausal symptoms
* Mild depression
* Lack of energy
* Decreased ability to handle stress
* Muscular weakness
* Increased allergies
* Lightheadedness when getting up from a sitting or laying down position
* Decreased sex drive
* Frequent sighing
* Inability to handle foods high in potassium or carbohydrates unless they're combined with fats and protein

That site explains how it all comes together really well, but I liked this one for the supplement regiment:

I'll post what I've started taking later :)

Roller Girl

Ah. The day I discovered the foam roll...I was sooo happy. The YMCA trainer was showing me how to use it to stretch out my thighs, but my back got jealous (like it does when I put Banalg pain cream on my arms or hands) and I swear it was practically crying out, "Now me, me, me!"

And it was RIGHT. I lay down on it, knees bent, and just rolled up and down.
That first time, my back cracked and I felt something falling back into the place where it should've been. It was a GLORIOUS feeling. Who would have thought it'd be so easy to give yourself a back massage? Plus, rolling it under the fronts of my felt like the muscles were so tight, they'd been meshed together in knots, and the rolling action worked it all out...My body was thanking me.

And the trainer was right. I've had this thing, where if I try and do the recumbent bike, within a couple of minutes, my thigh muscles lock up into a cramp-spasm type thing where I can barely walk. No amount of stretching ever seemed to help. But that magic little foam roller? Voila!

So here's a link to an article about using foam rolls and other PT aids for exercise even a weakling like me can do!

What a WEEK!

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

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

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

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

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

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

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

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

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

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

Tuesday, August 18, 2009

Pfizer Launches Free Medicines Program for Americans Losing Employment/Insurance in 2009

Pfizer Launches Free Medicines Program for Americans Losing Employment/Insurance in 2009
by Pfizer Inc. (news release)
June 30, 2009

The company's employees inspired this plan to help people continue Pfizer therapy [including the fibromyalgia drug pregabalin (Lyrica®)] during unprecedented economic times. See the eligibility requirements, contact information, and a link to the printable application form, below.

NEW YORK, May 14, 2009 - Pfizer Inc. announced today that it will launch an innovative program to help eligible unemployed Americans and their families who have lost their health insurance maintain access to their Pfizer medicines for free. The inspiration for the new program, called MAINTAIN™ (Medicines Assistance for Those who Are in Need), was generated by Pfizer employees who were witnessing friends, family and neighbors struggle to make ends meet after losing their jobs.

“We all know people who have been laid off recently and have lost their health insurance, making it difficult for them to pay for health care,” said Dr. Jorge Puente, Pfizer’s regional president of Worldwide Pharmaceuticals, a leading champion of the initiative. “We thought there must be some way we could help recently unemployed people who are taking Pfizer medicines to continue treatment during these challenging economic times.”

The program, which applies regardless of prior family income,

• Will be open for enrollment through December 31, 2009

• And applies to eligible Americans who have become unemployed since January 1, 2009.

It is designed to help recently unemployed Americans and their families:

• Who have lost their insurance

• And who are taking Pfizer medicines to continue treatment for free for up to one year. [See eligibility requirements, info for those in need of medicines made by another company, and a link to view the application form, below.]

Nearly 46 million Americans lack health insurance coverage, and that number is increasing as unemployment rates reach their highest levels in 25 years.

Pfizer employees proposed the idea of MAINTAIN to the company’s senior leadership team just within the last month. Pfizer employees also asked to be able to do their part by donating their own money to the program, and the Pfizer Foundation will match their donations.

The current economic environment has added considerable new stress to the daily life of millions of hard-working Americans, and our colleagues are responding to help their neighbors in the communities where they reside,” said Jeffrey B. Kindler, chairman and chief executive officer of Pfizer. “The speed with which we created and approved this program is proof of our commitment to help people access the medicines they need to live healthier lives. With the launch of this initiative, which I am proud to say was proposed by our colleagues, we are doing what we can to ensure that recent loss of employment does not preclude people from managing their health.”

Eligibility requirements of the new program include:

• Loss of employment since January 1, 2009

• Prescribed and taking a Pfizer medicine for at least 3 months prior to becoming unemployed and enrolling in the program

• Lack of prescription drug coverage

• Can attest to financial hardship.

People who qualify will receive their Pfizer medicines for free for up to 12 months or until they become re-insured (whichever comes first). More than 70 Pfizer primary care medicines will be available through the program.

To make it easy for people to apply, the program will be integrated into Pfizer’s existing family of patient assistance programs called Pfizer Helpful Answers®. A single point of entry makes it easy to get help:

• All of Pfizer’s patient assistance programs, including the new program, can be reached by calling a single phone number (1-866-706-2400) or by visiting

• Those who contact Pfizer Helpful Answers in need of medicines made by another company will be directed to the Partnership for Prescription Assistance, a pharmaceutical industry initiative that serves to raise awareness of, and boost enrollment in, more than 475 public and private patient assistance programs.

The new program will be fully operational on July 1, 2009. However, people in need now can call 1-866-706-2400 for help. MAINTAIN is a part of Pfizer Helpful Answers, a joint program of Pfizer Inc and the Pfizer Patient Assistance Foundation. [To review the printable application form, click here.]

Source: Pfizer Inc. news release, May 14, 2009

What keeps you going?

So I just had a mini meltdown.
After bursting into tears while talking to a rather insensitive, self-important doctor who told me some people live with this for 20 years...

I won't be one of those people. Not the way my life is going now.

I really don't have anything to keep me going.

As I see it, I'm running on a whole lot of stubbornness, and a bit of hope.

What else should there be to keep me going? Don't tell me my religion, because I don't believe in it. It doesn't make sense, causes lots of wars, murder, prejudice, and fighting. I've studied many different religions, so I know what I'm talking about. It just doesn't work for me. It's occurred to me that perhaps, I could be being punished for this belief, but then I remember that in my 17 years as a devout Catholic who would go to mass on Sunday and jerk awake with a start if I dared fall asleep w/o praying, bad things still happened. Plus, it doesn't go along with how religion supposedly works.

I guess there's a wee bit of faith thrown in w/the hope. I have faith that there must be a reason for this. Maybe I even chose this life myself, to learn some particular lesson. So what if I Kevorkianed myself and found out I had just totally sabotaged my own plan? lol.
On the other hand, I COULD find out it was all a game; me and a couple other souls just messing around to see who could stand it the longest? lol. 50-50 chance, really. I'm already in my own personally customized hell as far as I'm concerned, so...

I guess I'll give it a couple of years. My hopes are mainly pinned on my Social Security benefits outcome. The retroactive money, plus benefits I'd be entitled to, would again allow me to live a somewhat normal, self-sufficient life, the money, possibly even allow me to get well, or at least better, there's no doubt in my mind about that...
Plus continual financial stress of the last couple of years would finally be gone, long enough, hopefully, for me to find a way to get on my feet, and I could go back to having a normal life, filled with great people to care about and be cared for, hopefully, some pint-sized. Being attractive is just another cruel joke piled on top, after all, if you never get out...

Tuesday, August 11, 2009

12 More Pages: Great Dysautonomia Info on Facebook

Just wanted to quickly share the Facebook page of Tyler Gurney, which I have been finding very useful and enjoyable. It's always great to have a young person share their experiences with Chronic Illness, and he is doing a great job :)

Here is his website as well:

Gratefulness and Acceptance

Well. So today has been a far better day. I stayed up late last night, enjoying chatting with friends online and playing on one of Facebook's fabulous apps. (I am so grateful for the Internet...I'm not sure what I would've done in the years since I got sick, if it hadn't been for the wonderful people I've met online who have given me the love and support that I haven't always been able to get from my offline friends and family. Seriously. (Although some of them are friends and family as well, love you guys!)

So anyways, today I let myself sleep in. The days have cooled off a bit this week, and this morning felt like heaven, I just stretched all over my nice cool sheets and decided to stay in bed as long as I wanted. When I finally did wake up, I felt surprisingly rested and peaceful. I didn't feel fabulous, but it didn't phase me. It was quite surprising, as I went about my business feeling breezy and relaxed. (The only thing I've done differently, is that I took a supplement called Vinpocetine, which I'd originally bought to try and combat the cognitive dysfunction I suffer from; it didn't seem to help, but it came to my attention that it could possibly be helpful with the Orthostatic Hypotension, by increasing blood flow to the brain. Sounds good, right?)

I had a nice comment from one of those friends who I actually know in person, but who has been an endless source of support and kindness and whom I keep in touch with mostly online, and she spoke of "accepting where you are", which reminded me of a quote from Laurie Edwards (author of Living with Chronic Illness in Your 20s and 30s)that said just about the same thing.

It helped when I read it, but this week...well, I just started seeing things as longer term. For example, I've been sick for a month straight now...Haven't been able to accomplish much of anything, and it was driving me insane yesterday. I kept thinking how it seemed like it would never end, and the fear snuck in that things might continue this way...I began to think that in general, the last years, nothing I try works out. Working, going to school, working from home, dating...
I keep fighting, and I have so much anger inside sometimes...
Today though, reading what my friend wrote, and thinking of all that, I remembered a therapy session where my counselor made a metaphor of my coping style with someone trying to dig a hole to China, lol. I wasn't getting anywhere, so maybe it was time to stop working so hard, digging myself a deeper hole, lol.

Lately, I've felt driven to just giving up. I've been feeling like every single day is such a battle, just to get through...even w/o getting anything significant done. I keep thinking, maybe I should just give up and stay in bed all day, not try and do anything at all. Well, yeah, that may be a slight exaggeration, but maybe it wouldn't be such a bad idea?

Stop worrying about time slipping through my hands, not accomplishing anything that I wanted, stop being so angry, stop stressing...maybe that's what I need to do now.

Anyhow, that heavenly state I was in didn't last. I'm in pain again. It's definitely a UTI, and I have no money for an analgesic from the drugstore, or to go to the doctor. But I'm not that stressed, and I am still SO grateful for my morning of peace and relaxation.

Monday, August 10, 2009

Coping, Acceptance, and Dating

I am utterly exhausted. A problem I have, is I have a very active mind. I raised myself with the philosophy of living life to the fullest...nothing makes me happier than a productive day, working, playing, whatever, as long as I feel accomplished. I can't seem to get rid of that notion, it seems to be an integral part of who I am.
I remember a few years back, when I'd only been sick for awhile, having a summer when I was trying a new treatment, had just recently stopped working full-time, and I was so exhausted from the moment I got up...that all I could manage was to move myself to different upright positions around the apartment. From bed, to my futon. Once I was fully awake, to my computer chair, once my knees started hurting, outside to the balcony onto a chair with a leg rest...back to bed, and so on. All the while I was thinking, planning, brainstorming for ways I could manage to work at home successfully. I was confident I could do it, once I had the energy. My last job had allowed me the freedom to wear many hats, and despite having my brain so burnt out I couldn't concentrate or remember enough to be of any use by the time I went on sick leave, it had given me to the confidence to know that I could do anything I set my mind to. So I planned, & plotted. And waited.

These days, I just don't know anymore... I still have ideas...I just can't seem to set them in motion. When I've come close, I've worn myself out...
The problem I face these days is, that I never can tell how I'm going to feel. I beat myself up mentally, telling myself I'm just not trying hard enough, not getting organized enough, not planning well enough, not pushing hard enough. And then I have a day like today. I sat for awhile to allow my body and blood pressure to adjust. Had breakfast. Checked my e-mail and Facebook. I'm still having unexplained pain (I can't figure out if it's a UTI, or the Endometriosis acting up) in my lower abdomen, which gets worse if I have my knees up in a reclined position, so I gave up on the gym, as the only cardio I can do right now is the recumbent bike (treadmill hurts my ridiculously sensitive feet, plus would allow blood to pool in my legs, if I'm already feeling sick (POTS) then that would not seem like a smart idea...eliptical trainer is out too as the up and down motion seems to aggravate that as well).

So I decided to just try putting my feet up against the wall while lying down, to get the blood out of my legs and back up to my upper body/brain. That seemed to help. So I tidied up around my home, mostly just put things away or in the trash, which consisted of picking up something in one room, taking it to the other room, forgetting why I was there or why I'd picked something up, where I wanted to put it, and repeating with different things in different rooms. Then I'd start to feel sick. I'd sit down for a bit, then get up and start doing things again. Then sit. Check my mail, because my mind was too restless to just sit and watch TV, and my lower abdomen hurt lying down in the recliner, and there was nothing in my bedroom to keep my mind occupied...I made progress though.
Finally, I made it to the bane of my existence. Clothes in my room I'd repeatedly put on my bed to try and fold and put away, but that I'd repeatedly ended up not doing for about two weeks. This is where the guilt and self-reproach comes in.
Until, finally, I'm almost done folding, and I find that my back is killing me, I'm out of breath, and I feel like I need to lie down NOW, and I struggle to finish, but I do, and then I lie down. I don't lie down for long, my mind gets bored. But the fatigue is overwhelming. I'm exhausted, and on the one hand I can't believe it, while on the other hand it suddenly makes sense why I hadn't gotten it done. Maybe I wasn't being a wimp? All the while my conscious mind refused to admit that it knew this was why, my subconscious still believes I am a normal person, that it shouldn't be such a big deal. And this is the dilemma I find myself in. This is the battle I find myself exasperatedly fighting day after day.
It occurs to me that something is wrong with me. That after 7 years of dealing with these health issues, I should have adjusted. I shouldn't feel guilty, I shouldn't be questioning myself, or caring what others think of me. But I haven't, at least, not completely, and I don't understand why or how to fix it.
I'm a problem solver, a fixer, but I can't fix this.
I'm stuck. No matter what plan I come up with, it backfires, because the plan must be different every day. Some days I push, and I reap the rewards. The very next day, pushing might prove to be the completely wrong choice.

I drop myself into the computer chair. I can barely hold myself up, but I need a distraction to stop myself from thinking myself into a scream of frustration.
My phone goes off, and I have a message from a guy I've been talking to, dating being part of my latest plan to make my life worth living again. He's wondering where I've been, if I got his message. I try to think of an answer other than being sick, and I end up overwhelmed and I can't bring myself to check his msg online. I don't want to scare him away, it's not time to risk it yet.
But it all shouldn't be this hard, should it?

Saturday, August 1, 2009

Back from Hiatus!

Hi everyone! I'm baa-ack! I know it was a long hiatus. The holidays were really, really tough on me this past year. To be honest, by January, I was feeling like a bit of an emotional trainwreck, so I didn't want to risk subjecting any readers I might have to all of THAT!

So. This is the NEW fibrogrrl blog. You might have noticed, I changed the name. I really loved Phoenix Rising, because it seemed to fit so well. BUT, my rising from the ashes has been very slow to date, AND it just so happens that there is ALREADY a blog called Phoenix Rising, and it's about CFS.

Fibrogrrl, if you're wondering, stems from a couple of different things; first my fellow Gen-Xers may remember the whole RiotGrrl movement. Although I'm not sure I'd call myself a RiotGrrl, a big part of my life pre-Fibro was dedicated to the pursuit of and enjoyment of good music. I was a grunge girl, wore babydoll dresses with 20-hole Doc Martens. Or with pink schoolgirl skirts and knee-his while smoking in the parking lot of my high school. I listened to Hole and Human Wast Project, and wanted to be sure everyone understood that girls could rock just as hard as the guys, and that we could run in music industry circles WITHOUT being groupies.

Most of my credit card charges were for schoolbooks and concerts. I even had a fabulous internship at a music mag where it was my job to go to concerts and shows and give out free stuff or execute marketing promotions between the magazine, and partners which included radio stations and bands (none other than LA.'s World Famous KROQ, and the likes of Metallica, or Korn!)
Pre-Fibro, music was my life. I judged people by the music they liked, picked boyfriends and friends the same way. Sounds crazy, right? But really, the type of music a person likes says a lot about a person. Or so it seemed at the time, lol. Those were some good times. I lived, breathed, and dreamt music. I could go the Sunset Strip and go to any of the famous little clubs you hear about anytime a cool band was playing, and I would know someone there, whether music lover, person in the band, a journalist or mangement, and various other people from the music industry. I rubbed shoulders with soon-to-be rockstars and sometimes the actual thing. And no I was NOT a groupie, lol. (Actually, you had better not have even used that word with me!) I actually hated how full of themselves guys in bands could be, so I rarely gave them the time of day...I left them to their true groupies. I just wanted to be around the music, and the people who loved it.

Okay. So, the other part of Fibrogrrl is that, well, to be honest, living with a chronic illness, much less a few of them, sometimes it CAN feel like you need Superpowers or something. It's not something like Cancer, where you (usually) go through a set period of hellish treatments (which at least are proven to work) and then you're either better, usually for good, or you are no longer of this Earth. Everyone understands the severity of Cancer. They know it's not always visible on the outside. They don't question a person with Cancer for managing to pull off looking normal, like so often happens with FM and other invisible illnesses. (It's like, sheesh, well excuse me for using makeup, putting on my best clothes, taking extra pain medicine and managing to smile for family and the cameras for a couple hours on holidays, sure that MUST mean I'm just fine, right?)

With chronic illness, you have to reconcile yourself with the fact that you may be feeling almost normal one day, or several even, and then feel like you honestly are trying to summon Super-human might just to get started with your day or accomplish the most trivial of things the very next day. Sometimes just getting through the day almost feels like too much...

I recently heard or read someone remarking that they thought it would be better to just have a leg amputated than live with Fibromyalgia, because at least then you would know what to expect, you could deal with it, and get on with life. I have to say I agree...Awful as it sounds, even w/o a prosthesis, you would at least know what you were up against every day, and learn to work around it. The scenarios with my particular group of illnesses are so varied, I can't seem to get a handle on them, and it drives me nuts!

I'm stubborn, a fighter, a problem solver. I'm used to being the underdog. But I was also used to meeting my goals, getting to the finish line. The hardest thing for me to accept is that my health seems to be a problem I cannot solve. I've tried so many things, evaluated, re-evaluated. Pushed myself, forced myself to rest...Nothing seems to work. When I have more than a few good days sometimes it seem like a cruel joke...I get so happy that I can be a productive human being, feel useful again, not feel like a failure, let go of the guilt that plagues me for not being able to work a normal job...I begin to think maybe I just wasn't pushing hard enough before...that I'm just wasn't being disciplined enough with myself. I start to have hope that I can find a way to make money despite my health...and then it all comes crashing down. Hopes crashed, coping skill sets must be switched. No amount of pushing will help, because I just physically can't. And did I mention that even the good days are challenging to get through?

Anyhow, so that's what that change and name are all about.

Stay tuned for next time, an update on my battles with Dysautonomia and Chronic Enteroviral Infection. Fun stuff. lol!

Friday, January 16, 2009

Low Cortisol in Women with FM

Can't really say this is a surprise! (At this point, I get stressed out over nothing...and that is so not me.)

Urinary Cortisol Levels in FM
Friday, January 16, 2009

FMOnline vol. 9, no. 1

A study recently published in BMC Research Notes looked at levels of urinary cortisol in women with fibromyalgia, hoping to prove that the lack of strength or vigor in people with fibromyalgia is associated with below-normal levels of urinary cortisol, expressing a deficit of the hypothalamic-pituitary-adrenal axis. Comparing urinary cortisol levels of 47 women with FM, aged 29 to 64 years, with levels in 58 women of comparable age who do not have FM, the researchers confirmed that women with FM have significantly lower urinary cortisol levels than women who do not have fibromyalgia.

FDA Gives Milnacipran Green Light for Fibromyalgia Treatment

Interested in seeing how this works on real people. Not that I could probably afford it anyhow, since my insurance has a brand name drug deductible of $500...What are your thoughts?

FDA Gives Milnacipran Green Light for Fibromyalgia Treatment – Third to Be Approved, After Lyrica and Cymbalta
January 15, 2009

The drug milnacipran (to be marketed under the brand name Savella™) received FDA approval as a prescription treatment for symptoms of fibromyalgia (FM) on January 14, 2009 – and reportedly will be available in U.S. pharmacies by March.

Milnacipran – a selective serotonin and norepinephrine dual reuptake inhibitor (SSNRI) developed as an antidepressant – has been tested in multiple trials for ability to demonstrate concurrent improvement in FM pain, physical function, and overall impression of change (global assessment).

Trials Measured “Global” Symptom Status
Generally, more trial subjects taking milnacipran than subjects taking placebo reported “at least a 30% reduction in pain from baseline and also rated themselves as ‘very much improved’ or ‘much improved’ in the global assessment,” according to a release by the drug’s developer, Cypress Bioscience (San Diego), and Forest Labs (New York), which owns the rights to milnacipran in the U.S. and Canada.

Milnacipran “is the only product approved for the management of fibromyalgia that used this complete responder analysis as its primary endpoint,” observes Cypress Bioscience CEO Jay D. Kranzler, MD, PhD.

“The introduction of Savella is important because it is the first drug approved to treat the symptoms of fibromyalgia using a composite responder analysis,” notes fibromyalgia pain specialist and researcher Dr. Daniel Clauw, Professor of Anesthesiology and Medicine (Rheumatology) at the University of Michigan, Ann Arbor.

May Address “Abnormalities in Certain Brain Neurotransmitters”
“Although the exact mechanism by which Savella improves the symptoms of Fibromyalgia is unknown, some researchers believe that abnormalities in certain brain neurotransmitters may be central to fibromyalgia," the news release states. "Savella blocks the reuptake of both norepinephrine and serotonin, with greater selectivity for the inhibition of norepinephrine reuptake in vitro. This may be the mechanism by which Savella acts to improve the symptoms of fibromyalgia.”

As with all potent drugs, milnacipran is not without potential side effects and contra-indications, as detailed in the Cypress Bioscience/Forest Labs news release under “Important Safety Information.”


Thursday, January 15, 2009

Ixnay on the Endometriosisnay

Got back test results from my visit to the doctor the other day. Turns out, I have a raging UTI. THAT'S what all that pain was about. Yay!
I thought it was odd that the Neurontin, which worked so amazingly last month, had no effect this month.

I also have no cavities. Contrary to my brother's girlfriend's dire prediction that I had a cavity that needed a root canal, the sensitivity is due to some dentin wearing away, and if I don't stop it, it will be a cavity. I've already switched to a toothpaste for sensitive teeth with fluoride though, so that should help, and I'm going to be more diligent about keeping my mouth moist. It dries up from some of the meds,common thing w/FM, used to constantly suck on Halls Breezers, but then discovered there's sugar in there...switched Xylitol mints (have TMJ so can't chew gum) but kept running out, so I bought myself a ton of them...

Had other tests come back not so conclusive, meaning further exams, but I won't get into that unless I need to. The whole cross that bridge when/if you come to it deal. I had a good day darnit, and I'm going to keep it that way.
I'm so tired, but it feels good. It's "normal people tired". Like, I had a full day and got a ton done and I'm drowsy and ready for bed tired. How often does THAT happen?
(In case you're new, not often. Usually it's more like, so exhausted I can hardly breathe but I can't relax much less sleep for the life of me. So this is a sweet deal.)

Off I go...

Endometriosis makes a comeback...

Ahh. So about two posts ago, I was wondering about what it would be like to be in really bad pain that didn't go away. I got the best glimpse of that I've had in awhile today.

I'd gotten my Neurontin filled, because I remembered how bad and unrelenting the cramping was last month, and it having occurred to me that maybe it was the pain amplification of FM making it hurt so bad, and my blood pressure being above normal (high) for about the first time I know of from the pain(usually too LOW) I decided to try some Neurontin. (My other painkillers were not doing the trick, and I figured if my blood pressure was that high, I wasn't being a baby, it really WAS that bad.)
And it worked, like magic. After constant dull nagging pain for 24 hours, it was like something went still, and I realized I was relaxing because I had no more pain!

So today I had to drive an hour to go to court over a ridiculous issue with a ticket.
Moderate pain all the way there. But once I got there...The Neurontin didn't work this time. I was contemplating how bad it was going to get and if it did get worse, which hospital would take me, since I have ER bills at about every hospital in that town. But I'd been waiting 4 months for that court date,driven all the way out there in pain, and I didn't know what would happen if I didn't appear...So I took one of every painkiller I had (which I've never done before, but desperate times...) and finally it let up, right about the time I was thinking I couldn't take any more.

Guess it's time to get back on the Nattokinase & Indole-3-carbinole...whether caused by a virus, or just another weird consequence of FM/CFS (I read that as high as 50% of women with these illnesses have Endometriosis as well) it's back, it hurts, and I have to stop it. My first surgery for it sucked, I don't want to do that again, or deal with the symptoms that made me have to get it. (Nausea, hot flashes, insanely bloated stomach, pain so bad I had to take Vicodin 24/7...I would actually wake up at 5-6am from the pain because the meds had worn off!I never get up that early! Go to bed,maybe but no wake UP!) Or these hellish periods. I have enough bad days.

On the up side, I was feeling a little loaded by the time I had to get to court. That thought does give me a little perverse joy (though it was pretty justifiable I think) especially after the judge being a jerk. Not that I condone that for myself or anyone, I hardly ever take heavy duty meds like that, or go out in public on them, but I had to be there...By the time I was called up, I was feeling okay. Up until the part where he ordered me to pay $583 bail (on a fix-it ticket I sent in on time that THEY lost) and come back for a trial in JUNE. (I thought he said January though.) Then I burst into tears. I'm just so tired of being made to jump through hoops by one branch of government or another...

Well, here's hoping the pain stays at bay long enough for me to get some sleep, so tired...and wishing I had a lawyer!Then I wouldn't even have to go probably. Screw judges.

Sleepydust Video

I guess I'd sent this to my cousin awhile back. The memory of doing it is lost in the fog, but she e-mailed me today, saying she saw it, and had no idea I was going through all that. The greatest thing she said though, was that she loved me.
That says everything. I really think it's impossible for most people (w/o FM/CFS) to understand just what I've been dealing with...Even I have to admit, that I would look at my MySpace & Facebook pictures, my smiling face and all the mischief, and think, well, she can't really by all that sick. What those pictures don't say is how I felt the next day or days, or that some of them are a year old, or that it was months before I went out with my friends and had a day as fun as the ones in those pictures again, that I retreated back into my cave guilty for having used all that energy for fun, or was too busy trying to get from day to day and survive, keep a roof over my head, to risk wearing myself out by going to a get-together or a party.
Or they don't realize at holiday get togethers, just how much it takes to put myself together so well,don't know how exhausting it was to do my hair, they forget about the makeup, don't know I bought my dress on sale for $7 or that my tights have runs, my 4 year old boots had to be carefully polished to hide the scuff marks & wear & tear,or that their tiny heels, worn for just a little while, had me limping the next day, and the inside of my cute purse is falling apart, all because I can't work a normal job, no matter how I long to, but I go through all the trouble because it makes me happy to look pretty every now & then.

So while I can hardly expect people to understand, that just makes me extra grateful when anyone catches a glimpse of it, and says those three words that mean everything, because sometimes it gets even tough to love yourself when you seem to be losing everything, and no matter how you rack your brain you can't find a way to fix it because your body won't allow it, so to know that someone you admire and hold very dear still loves you no matter what, that is a true gift :)

Here's the Sleepydust vid...if I posted it already, oops!