Tuesday, November 16, 2010

Surviving Showers & Kitchens

All I have to say, is BLESS you Adrienne Dellwo. Any time there's even seemingly obscure facet of living with FM or CFS that makes me feel ridiculous and wonder if I'm the only one, she writes an article on it. Not just that, but her articles are well researched, and authorititave.

Tonight, I was thinking jeez, this is so ridiculous, why does it take me so long to get everything done? I can't even rest properly, I go till I can't stand it then I lie down when I can't stand the fatigue/and/or pain anymore, but half the time I get up before I feel all the way better, so I do a bit more, and repeat. And I wonder why it's so hard for me to find a moment to return calls. Everything must be prioritized. Dinner must be eaten, therefore it must be cooked. Even eating wears me out. Little things. Taking out the trash. Cat's litter must be cleaned. Heart's pounding; medication must be taken.

As for showers: I'm lucky it doesn't seem to be that difficult for me lately, because there have been times when just standing there seems like too much, and I'd give my left foot for one of those shower chairs. I almost don't even shave my legs in the shower anymore, my balance is awful and I'm afraid I'll hurt myself. But still, once I get out, the first thing I do once I'm either wrapped in towels or dressed,is lie down! And like it says in the article, there's the temperature thing. In the summertime, I HAVE to have the A/C on after I shower, or else it's useless. And if I have to use a hair dryer or iron, ugh. I may still overheat. Part of the reason I stopped trying to go out to meet people. I get so tired just getting ready... It gets so old and exhausting trying to manage SO many little things. Ah, this is starting to feel a bit whiny. I'll just post the links now, lol.



Sunday, November 14, 2010

City of Angels

I can't believe I haven't posted about this yet. I've been here a week already! Granted, it was all very sudden. I was feeling trapped, suffocated, feeling the soul-darkening anger-flames licking at my insides again. Yes, as expected, with November came the blues. Actually, I got lucky, they skipped October!

{Music sidenote:Ha, Emiliana Torrini song playing on a TV Show. I swear that's how she makes most of her money, at least here in the States, where's she's never been mainstream, I hear her on soundtracks regularly.}

So anyhow, I was having trouble sleeping again. I went to bed at two one night about 10 days ago, and woke up at 6am. Wide awake, in that mind-running out of control state where I randomly start thinking about unpleasant things that happened, sometimes years ago with a new perspective, or perhaps finding sudden explanations for events I never understood before,letting my bad dreams confuse reality with things that haven't even happened yet; I knew if I tried to go back to sleep, it wouldn't work, I might get halfway, but end up spending hours in that state, tossing and turning, trying to escape all the unpleasant almost automatic, over-thinking. So I went on Facebook, to find my cousin, who also suffers from a chronic pain ailment, had also only gotten a couple of hours of sleep and didn't want to think anymore either. She was leaving the country to see a gravely ill relative, and I was telling her how I wished I could be somewhere else right then, I was tired of worrying about other people's problems, being far away from everyone I knew, without the energy to make new friends. So she offered me her house while I was gone, a good deal for us both, I couldn't believe my luck.

So now here I am, and it has been a really good thing, I'm so grateful! I'd been here many times growing up, but usually for parties, or family gatherings, when it was full of people, and that's not quite the same. On a more personal level, it is a very charming, cozy abode. The outside is adorable, like a Spanish-style California Cottage. Yes, it is an actual, free-standing house, and I, though I grew up in a couple of lovely ones, have not had the luxury of living in one of those for well over a decade. The inside is cozy with some unique customizations, and you can almost feel the love and memories that have inhabited it, with the touches of familiarity that seem to carry over into all of my Mother's family's homes...heirlooms from my grandmother, decorations, paintings, furniture, and tchotchkes that I didn't even know I remembered. It makes me giggle, too, how either through similar tastes, pure coincidence, or perhaps a contagion of the random gifting my mother likes to partake in, I see many products that my own mother uses as well... (For example, my Mom buys something and either she buys one for my aunt, or my aunt sees it, buys it too, and buys one for her daughter, or she sees it and wants one too. Or inversely, my cousin might have something my aunt likes she goes shopping w/my Mom, Mom gets one too, lol.) Though I don't know the inhabitants of the house as intimately as I'd have liked, and though they are absent I somehow feel very welcome, and warmed.

Now if only that were enough to fend off the fatigue!

There is so much to do around here, places to see, cousins to visit whose kids are growing far too quickly, my aging and beloved aunt who I always regret being too tired to come see, all within a 15 minute's drive. Not to mention an entire area to become reacquainted with (if you can say that, I was born and lived in the city that starts a couple blocks away for only my first year, but my grandmother lived there until her death in 1992, my aunt until she re-married...the familiar street names call to me, hinting that maybe if I drive down the right one, and find the right apartment, my grandmother will be sitting there waiting for me. But there is grocery shopping to be done and after, I fear that in my fatigue, my normally/formerly amazing sense of direction will fail and I'll just end up getting myself lost, driving in circles, getting more tired and risking an accident.

So anyhow, I pushed myself,spent some wondeful, simple, quality time with some of my family earlier this week, then ended up spending a couple of frustrated, guilty days I'd hoped to spend seeing more family, trying to rest up enough to shake that fatigue so bad that breathing and being upright are a challenge.

I'm feeling a bit better though, and I feel the energetic blocks beginning to shift, like puzzle pieces, drifting out of their unwelcome resting places, and I begin to feel lighter, not so scattered and uncentered, and energetically clogged. I think soon I will be able to focus and do things I know will benefit me, like Yoga (I brought some DVDs with me) some meditation, and Self-Reiki Treatments. I'm hoping that will help further, and I will manage to get out and explore the City of Angels as well, and if I'm really lucky, do some writing.

Though it's a strange sort of city, L.A., all scattered and in many ways, mostly un-citylike (only a couple of small areas have the concentration of skyscrapers that are signatures of places like New York, Chicago, even San Francisco.) I've found it attracting me lately; out of the blue a couple of months ago, it occurred to me maybe if/when everything works out, perhaps Downtown L.A. might be the place for me, odd, right, a busy city for someone who's always tired, but it's all about the vibe. It's alive, and genuine...and Downtown has been booming slowly but steadily for a few years now. But yes, I've always loved exploring new cities...finding the hidden and not so-hidden places, learning my way around...before I became ill I revelled in it, San Francisco, OC, Hollywood, the infinite maze of Southland freeways carefully connecting them all...Yes, South Orange County is particularly beautiful, with its lush greenery, landscaping,shiny-newness and oceans, but I find something intriguing about businesses in buildings that have been around since long before I was, the variety of people here, and the neverending activity. I've always believed L.A. gets an unfair rap...But if it's such an evil, shallow, soul-sucking place, why do people come here from all over the world? To me, there's something magical about the City of Angels...I just hope I can become acquainted with some more of it while I'm here :)

Monday, October 11, 2010

Reishi Mushrooms

More on Reishi aka Ganoderma Lucidum.

More on Reishi aka Ganoderma Lucidum.

I came across these in a coffee recently. Unfortunately, as much as I love it, I can't drink coffee without being sorry...my heart does not like! So I started looking for it, and found it by accident while looking for Bonito flakes (to tempt kitty to eat) at my local Asian Market...

Stress Eating and Magic Mushrooms?

Ah, it must be that time of year again. The last 3 months of the year, when I find myself getting a bit frantic. The sunshine is slipping away (ok, so we had a heat wave here in California last week, but still!) the days are getting shorter...the holidays are quickly approaching, which is tough when you're broke and can't do much about it. History shows that this time of year can be a frantic struggle for me to hang onto my sanity. I start losing hope, depression begins to creep in, and I want to be well, YESTERDAY.

This year, time has slipped by so fast that I'm half dazed when I try and accept that it's nearly halfway through October...but I feel the crisis creeping in, in the form of a scarcely controllable urge to stuff my face! What's more, I hardly even care. I'm SO anxious so much of the time, and it manifests itself as an urge to eat. Which yes, I can recognize, which seems like a good thing, but I think it might be making me even more anxious!

I suppose a big factor is the kitty. As I mentioned before, my fur-kid of 15 years has developed Chronic Renal Failure. It's been quite a fight to get her stable (not sure if we're truly even there yet) the last month or so. I've had to do lots of research, since I couldn't afford any more multiple trips to the vet, but I found myself in good hands, as apparently, many cats live well with this disease for years, and there is a wealth of information on the Internet about how to manage it. By pure grace I've been blessed to be clear-headed enough to mostly digest it well, though I've still had to re-read it multiple times, I am truly grateful that the fog mercifully lifted enough for me to take advantage of that.

I haven't been sleeping well, and I suppose that's a first sign; when I start waking up early and not being able to get back to sleep, it's a sure sign of extreme stress. I've had to give her pills, hand/force feed her food, stick needles in her to hydrate her...She is the closest thing to a child I have, and hard as it's been, I had no choice, and fortunately, I still have a little bit of that part of me that takes charge in an emergency. Actually, I'd been feeling gracefully calm and relaxed (finally!) before she got sick...so maybe my adrenals had begun to replenish themselves. But it's been exhausting. To be feeling sick and exhausted and know you have to hand feed your cat wet food, despite her razor sharp teeth and lack of cooperation...Or steel yourself to stick a sharp needle through her skin, and keep her from wiggling away as water leaks from it under her skin? Yikes. Ha, as I write this I begin to realize why I have been feeling SO stressed and exhausted. But the reward is, there she is, happily napping away on her meditation pillow, if not as healthy-looking as before, pretty close enough.

I guess the gaining the extra pounds back won't be the end of the world, especially since it's not like I'm dating at the moment. I've given up on the gym as well. (My shoulder's still recovering from giving in to the temptation to vent my frustration on the arm cycle, and the last time I was going to go, by a fluke, checking out an erroneous theory, I found out I had a fever...didn't want any infection being driven towards my heart, I have enough problems already!)

So anyways, what's this about Magic Mushrooms? Well, no worries, they're not hallucinogenic. They are magic because they are said to restore the balance between the Th1 and Th2 parts of the immune system... Ganoderma Lucidum, aka Reishi Mushrooms...Crazy, frantic girl that I am, I've begun taking some tea, and the results were nearly immediate. Within hours glands in different parts of my body were swelling and tender...This is a good thing, I believe, because as my doctor and many articles have explained, my immune system, if it were normal, would have fought off the Enteroviral infections I have. So if I'm getting all sore-throaty, swollen glandy, that means it's making it work properly, no? I sure hope so...

Incidentally, it also seems to have a very subtle, relaxing effect on me, much like Ashwagandha...Not quite enough to ease my binge-inducing anxiety, but it's definitely taken an edge off...More on those later...

Now, my mission is SLEEP. I'll let you know if it's successful...

Friday, October 8, 2010

Reactivation of Herpes Family Viruses with Epilepsy Drug


Why is this relevant you might ask? Well, the Herpes family of viruses is not what most people imagine, namely the STD. The Herpes family of viruses includes the virus that causes Chickenpox, Shingles, and Mononucleosis (Epstein Barr).

Interestingly, I took Neurontin for severe foot pain (which I now believe was in part due to blood pooling, and exacerbated by the overproduction of pain chemicals common in Fibromyalgia) and while I had expected for my other symptoms to improve during that time, as I was finally able to rest and de-stress (it was when I first moved in with my Dad) I actually got weaker, sicker, and generally worse...
(Incidentally, it was suspected had Epstein Barr about 15 years ago.)


My Phone Aversion, Explained!

Hating the Telephone with Fibromyalgia

Incidentally, it's not just talking...Though I much prefer texts and e-mail, at times I even find that overwhelming, sometimes, I can't even keep up with my Facebook notifications, lol. That was helped for a bit by have SMS notifications sent, but then one day that was too much so I turned them off. (I have SO much trouble switching back and forth between tasks...)

Monday, September 27, 2010

Pushing...and Fantasizing

It has been a long tough couple of weeks. I can't believe it's been so little time, it feels like longer...I was having a tough time as it was, healthwise, but what can you do when someone who has no one else is counting on you? Must, push, forward.

And I did, and it's been so worth it. It's nice feeling, too, to feel like you've managed to accomplish something. Ah, yes, I can hear the voices of various family members saying,

"Well, maybe you should try it more often!"

And I wish, once again, that I could get them to understand, that I'd do anything to be able to feel like that all the time, like I used to. And that they could just spend a week in my shoes, and see what it takes to just get through one of my regular DAYS. And that someone as sick as I am cannot run on adrenaline alone. Actually, I'm pretty sure that's how I ended up like this! I ran on sheer will power and adrenaline for about 2 years before ending up here, and I've been trying to grab a foothold on this slippery slope for the last two.

Anywho. I found myself fantasizing about/half planning what I will do when I get my SSDI retroactive payment. I think first, I will get my hair restored to a nice light brown with honey highlights...I've missed it, so sick of people telling me,

"Wow, your hair looked so good like that! Why don't you get it done like that again?"
Hmm, gee, well maybe because I can barely afford a haircut every few months?

Plus, many chronically ill people will tell you just how helpful it is to at least look good on the outside, even if you feel miserable inside... I think I'd do a spa day, too. I'd start some Gentle/Therapeutic type Yoga classes. See a Chiropractor, get a massage...Just anything to cheer myself up and lift my spirits, then start working on using any and all the holistic treatments at my disposal to get better, than start going on some spiritual (meditation, yoga, etc.) retreats/cruises. (I've never been on a cruise ship, but heaven for me is being on a boat in the middle of any nice body of water, so...I'm thinking the joy from that kind of trip might just cure me!)

Don't get me wrong, it's not about materialism, spending money, vanity...It's about not having to stress about every little purchase, every gallon of gas, EVERYTHING. Just getting rid of the stress and trying to find happiness again, because sometimes I feel like SUCH a bitter old hag.

It's about simple things, like having a clean home. Not having to do fancy footwork everytime I run out of a medication or vital supplement. Not having to worry about going to a meditation group that takes donations and not having money for it...Or worrying about what will happen if the person who's supposed to pay the bills doesn't... (Just when I finally believed it was overkill reminding people to pay the utilities...the electricity gets shut off for a day for non-payment, ah!)

Being able to take a treasured pet to the vet for checkups or emergencies...

Peace of mind, so I can focus on getting as well as possible, to seek out happiness, a living hopefully, and just...a life worth living...

Sunday, September 19, 2010

FMGrrl Needs Your Help!

Please pass this on to any of your "Chronic" friends who you think might be able to help, or know someone who can, please.




Thursday, September 16, 2010


lol. I had to share this amazing blog, I think Michelle says it ALL in one post than I ever could!


Wednesday, September 15, 2010

Pets, Walks, & Reiki

Managed the trip to the vet. It was exhausting, emotionally and physically. I got my Father to come with me, but I guess he didn't get that I needed him there for moral support, and for help if I got tired or my brain went on the fritz. As it was he took about 15 minutes to find parking (I had him drop me off, they were doing a little construction, plus I was late and overheating, but it wasn't more than a 30 second walk) and hadn't gotten to the waiting room until after I was called in. (Kinda like my last trip to the ER, where he ditched me to make a phone call without letting me know he was leaving.) Ok, trying not to be bitter here. Just another reason I can't wait for my SSDI to come through though, so I can get some help around the house & running errands if I need it, hopefully, cuz I get about as much help here as I did when I lived alone.

Anyhow, I couldn't remember exactly when the last time kitty ate a whole meal was, and the doctor was putting the pressure on, telling me it was really important to know the exact time, because it was life & death, basically. It ended up being a huge ordeal, because all I had was $60, and they wanted to do X-rays, which were almost $200, plus blood work for another $150. I ended up getting her an IV, which has helped, she ate after we got home, and finally is sleeping, plus I found out cats can take probiotics, so I'm going to try that before I go back to the vet Friday.
I was so wiped out when I got home, it really makes me thankful I don't have human kids, as much as I adore & want them, I can barely handle a cat!

Pets are such a comfort to the chronically ill though! Lately when I'm feeling really lousy physically and don't know what to do with myself, I brave the allergies, grab my kitty, and make her cuddle with me, and I feel SO much better. Silly, I know, but whatever helps, right? She's been my constant companion all these years, I just hope all the sadness and strife haven't affected her too much.

Speaking of which, I had an amazing weekend. I started out Saturday, feeling stuck and resentful and not wanting to be in these four walls. I was trying to find a reason to get out, and I realized I could just make it to the gym...so I did, ten whole minutes on the recumbent bike, and a minute and a half on the arm cycle, woohoo! I left feeling SO much better, and decided to go walk in this parky area next to a creek, close by, find somewhere to sit and look at the duckies...I found them all splashing around, took pictures, got teased by butterflies, had a ladybug land on my phone...it was lovely. I even did something I can never manage, I had a relaxed walk!
So I did that, and had a sort of wandering meditation (well, I did find a rock overhanging the water to meditate on, and a backless bench to lie on & contemplate the blueness of the sky...then came home filled with joy and with the stuckness lifted. I was giddy, and had tons of (very sporadic) energy when I got home, and was tempted to just go continue meditating, hell, meditating my life away...I figured, hey, if it makes me that happy, and is that good for me, why not? It's not like I have a job to go to...Maybe the extra rest will do me good...

Then Sunday I went to a Reiki Class (an alternative healing therapy that sends energy through your body to heal your chakras & stuff) got & gave some healing, and had some interesting experiences. I left there feeling like none of the bad stuff matters, all barriers were down, and anything was possible. I felt like my writer's block was possibly lifted, fear dissolved, anger & resentments set aside, just free. And maybe a little altered, lol. Anyhow, now I can practice on other people. I'm not sure I have a great talent for it yet (although that might just be because some of my classmates were actual psychics, no fair!) and am not really up to doing it on people as work, but I think I'd like to try some distance treatments, so if anyone wants one, let me know.

An Appropriate Quote

In keeping with the theme of my last post, although sometimes I wonder if my character can withstand all the blows to my reputation my chronic illnesses have made me take!

"Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are."
-John R. Wooden

Frustrated and tired, but hopeful

I've only been up a couple of hours, but my fingers & toes are icy, and my feet have been tingling like crazy. Soon, if I don't get off of this Desktop PC (laptop is unavailable to me at the moment) I'll probably get that creepy feeling like someone is pouring cold water down my scalp. Ickh.

I woke up too early (not as in, like 5 am, but rather early as in, I need 8-9 hours of sleep to be ok, and I got 5-6) for some reason my mind running off on a tangent of suddenly decided to analyze unprocessed information that led me to the conclusion that my Physical Therapist thinks I'm neurotic. I was too out of it to realize it yesterday, but after trying to explain/apologize to her about being late because my state of being suddenly took a nose-dive, I didn't feel like I could drive safely, and I had to persuade and wait for my Dad to get ready and bring me, she asked me if I was seeing a shrink!

"You know, that's known to be a component of that, so it helps". (!?!)

At the time I was taken off guard, happy just to have made it there for my last appointment, and instead of asking her to clarify whether she meant that depression usually becomes a factor in ALL chronic illnesses, or if she was under the mistaken impression that Fibromyalgia, Chronic Fatigue Syndrome, and POTS were all psychological in nature, I told her that the county health insurance "safety net" program I receive doesn't cover mental health. (!)

So annoyed with myself now. And a bit, with her. But more with myself because I could have educated her. Or because I had to? I don't know, lots of mixed feelings. I hate that people are so judgemental. They assume just because I'm capable of getting dressed and putting on makeup and smiling, that I must not be THAT sick?
But then, it's a crazy world, you really can't take people's word for anything these days, so you're almost forced to make a judgement on what evidence you can see...I know I used to, so I can relate. But it still sucks being me, having to cope with stuff like begging my Dad to drive me to an appointment at the last minute because I suddenly feel so exhausted and achy I can't think straight. (Seriously, last time I felt like that, I went anyways, ended up missing the freeway onramp, couldn't decide what detour to take to get back to it, and ended up having to pull over into a parking lot to try and decide what to do, which ended up being to NOT burst into tears of frustration at my lack of brain function and energy, be nice to myself, cancel the appointment, and go home to lie down and not demand anything of myself until I recovered.

Still it makes me so mad though, that Cognitive Dysfunction is SUCH a major symptom of these disorders and even healthcare practitioners know nothing about it.

I've had neurologists and psychiatrists tell me it's Depression, even though research clearly shows the central nervous system is affected, and umm, obviously in the case of POTS & Orthostatic Hypotension, if you're not getting enough blood to the head, that's not going to result in optimum brain function, now is it?

But so is the case with SO MANY of the symptoms of these diseases/illnesses/syndromes, whatever you want to call them. After almost 10 years of research I KNOW for a fact that it's not just me, most others with these illnesses have the same symptoms, what's more, they have been verified by actual, scientific testing...yet only a handful of doctors seem to know this.

(SPECT scans showing blood circulation and brain function for example, studies comparing and equating the Cognitive Dysfunction of CFS with that of Multple Scelerosis...)

But yeah, it's hard not to feel like a nut sometimes with these illnesses. They affect one in such dark insidious ways, affecting how you think, interact with people, socialize...I actually keep to myself these days, because I just don't have the brain power. Just trying to have a conversation with my Mother's neighbor while her kids are running around completely overwhelms me. (Doesn't help that she interrupts herself and me all throughout! lol!) It causes me to do stuff like forget to be polite (thanking someone for dinner & the like, stuff that was second nature to me before I got sick) failing to realize I might return a complement, or that I have spent the entire conversation talking about myself (or alternately not being able to hold onto a thought long enough while someone is talking to have anything to say by the time they're done!) sometimes makes me feel like there's not much of who I was left...but I still hold hope I will get better and then happily quit being auch a hermit and be able to properly interact with people again!

Well, I'm off. Have to go rest up to take my beloved 15-year old cat who can't seem to eat to the vet. Having my feet NOT going numb would help, as would not having to worry about whether I can hold onto her if my Orthostatic Hypotension acts up and I have to grab something in an effort to stay on my feet when I have one of my near-syncope spells...Fun times! Wish me luck!

Wednesday, August 25, 2010


Okay, well things are back to normal now. Well close to how they were before the infection that caused my symptoms to go haywire, anyhow!

It's a scary, scary thing being bed-ridden and feeling alone. Personally, it drives me nuts. There's not really anyone to talk to. Some friends are bored with or don't believe in my health struggles (that's what I get for successfully pulling off normal, lol). Any other ones I don't want to risk alienating. My Dad, who I live with, I guess is so used to seeing me in bed, he doesn't get that I'm really, really not doing well, and that I might need help with day to day things, like eating perhaps. Calling out for my Mommy (hehe, no I don't really call her that) is futile, since she and Dad are getting divorced and she'd only come see me here if it was a matter of life and death...(I think she'd come then? lol)and she gets more hysterical than I anytime I try and reach out to her in a crisis. As for my "little" brother, he can't be bothered. Last year I was bedridden for about 6 weeks with the same issues and was very depressed, because I'd been doing REALLY well for a couple of months (the higher you climb the harder you fall) and I practically begged, and he still couldn't make the 40 minute drive, even with a new car...

Anyways, it's over now. I can stand without nearly passing out and having my head squeezed in vicelike fashion. Heart's quit racing and beating erratically. Hand and feet aren't getting icy cold or numb, not out of breath and uncomfortable. Just a bit more tired than before.

School started. I had registered for two classes, then decided only to start back with one. I decided to go to both to check out the vibe & see which I liked best. I usually do better at night, and the class was from 7 - 9:50, but I was exhausted afterwards! I went home & went to bed early and slept past noon the next day, and was still tired.

The next class was today, but as I sat and skimmed through the class syllabus I realized maybe I'd do better to hold off on school for now.

I'm in no condition to handle another failure right now, or to be stressed in any way. (It's taken me most of Spring and Summer to get my stress levels a bit more stable.) Plus, over the weekend I was reading a book and discovered a thirst for spiritual practice, healing and inspiration that I believe will help me heal if I heed it. (No, I didn't find religion, can't stand the stuff. But meditating, positive thinking, a community of like-minded people who share good moral values, that I can handle.)
I realized just trying to make it to some of those events and meetings will take about all I can give right now, and eventually make me more ready to handle school again.
Plus, I have a stubborn, hopeful suspicion that my Disability case will be decided, in the affirmative, soon. Then I can really undertake the holistic/spiritual path to healing I am confident will help greatly. (I sit and fantasize about lots of Reiki Treatments, a good holistic doctor, an energy psychiatrist to guide me, massages, Gentle Yoga classes, and muscle testing my allergies away...ahhh.) Ommmmmmmm...

Getting sleepy now, going to take advantage of NOT being at school and nap!

Oh, and I decided to start the Epivir and Tagamet again, will see how that goes...

Wednesday, August 18, 2010


Got the laptop charger plug working. Yay.
So as I said earlier, last night was tough. It started with feeling so tired yesterday. Mornings have been really tough lately, but I push through them, and I had a PT appointment, so I tried to take it slow, but I had to be there...I wanted to be there...so I showered, got ready but by the time it was time to leave it was pure mind over matter, I just felt so tired, and out of it and and overwhelmed by a need to lie down. But I left, calling my Mom on the way out the door hoping for some support. But she was busy, and I forgot my Bluetooth, so in my already precarious state, I didn't get over for the freeway onramp fast enough. Then I realized I had no gas (and only money for parking at the medical complex) and that I was all clammy and sweaty, plus I couldn't think of how to get on the freeway. Much less fathom trying to do anything involving putting my arms over my head (even the stretches that felt so good, or with the hope of getting my neck rubbed & stretched.) On the verge of tears I just gave up and drove myself home to lie down.

Easy right? Wrong. I couldn't get comfortable. I got home, with my body's thermostat out of control from the 10 whole minutes in the weakish car a/c with outdoor temps of 85 or so degrees , turned on the a/c (even though it was reasonably cool inside, once I get hot like that I need cold cold to get back to normal) grabbed my cat and forced her to cuddle with me on the couch, which she graciously acceded to. (May the Universe bless our pets' souls!) Funny what some steady purring and a warm furry body can do to heal a hurting soul!

Of course, my allergies decided to act up, so I ended up with a sinus headache, which I couldn't take anything for because my tachycardia has been acting up, and the only med that helps is an upper that sets it off.
By nighttime my heart was flip-flopping anyways, all kinds of weird beats, chest pains, weakness, shortness of breath from the heart weirdness, excruciating headrushes and even my chest constricting on standing up, feeling hot, cold extremities, numb and tingling fingers & toes (at one point it felt like my fingers had blood clogged in them, they were hot & dark red) and I was contemplating going to the hospital, even though my blood pressure wasn't measuring too low and pulse was actually not too fast (must have been irregular beats or palpitations, which I happily have proof of since my Mom, a formal medical assistant, listened with a stethoscope and noticed them! Yay! One less thing to wonder if I'm delusional about!)
I was starving, so I ate, which made things worse...(I was starving, nothing easy around to make so I said screw my Body Ecology Diet, and broke out some biscuits and tossed them in the oven. ERRR! Bad idea, too hard to digest, couldn't spare the blood volume for it I guess, no amount of digestive enzymes could help that.)

Eventually I remembered there was a $25 copay for the ER, which I don't have, and since my BP or heartrate weren't too low or high respectively, I didn't want to risk having them dismiss me and make me feel like a nut...as long as I could sleep I'd be ok.

Got to sleep around 2:30am with the help of some sleep supplements.

Woke up at 6am. It all started again. Only worse. I was so tired, but I couldn't get back to sleep. Couldn't get comfortable. Was hot. Then freezing. Even my head was uncomfortable (I think maybe enough blood wasn't getting there and the blood vessels were constricting) I finally ended up getting rid of all pillows, which is crazy for me, because I have neck problems, but it was the only thing I could stand. Chest was tight, fingers burning, tingling, hard to breathe, same as last night but worse, worse and more varied, crazy symptoms than ever.

Need a rest...more later...

GREAT article on POTS

Woke up early. Rough night. Big time POTS flare. Wanted to share this article. Was desperate for something to refresh my memory about all this/some potential help and found this, which explains it all PERFECTLY. Cutting & pasting cuz laptop is dead, and effort of sitting up is making me sweat and feel really ill.

From: http://potsweb.50webs.com/

Postural Orthostatic Tachycardia Syndrome
Patient's report on causes, symptoms, and treatment
Patients should seek professional medical help and only use the contents of this page as general background information.
Tachycardia means an extremely rapid heart rate, usually described as a pulse rate of over 100 beats per minute (bpm). Postural Orthostatic Tachycardia Syndrome (POTS) is usually clinically defined as a heart rate increase of 30 bpm or more from the supine position (laying down) to the standing position within 10 minutes or less. Patients with florid POTS develop tachycardia over 120 bpm within 5 minutes or less. Some doctors use a strict 5 minute standard for defining POTS, while others use a 20 minute standard. Some patients have heart rates that go all the way up to 150 bpm and beyond. During tilt table testing, some POTS patients have large drops in blood pressure and pass out (syncope), while other patients have only relatively shallow drops in blood pressure. A small percentage of POTS patients have no drop in blood pressure at all. Studies show that about 75% of POTS patients are women and that a genetic tendency to develop POTS is often transferred from mother to daughter.
For a correct diagnosis of POTS there must be an absence of any other known cause of tachycardia, such as a specific heart condition. POTS is usually accompanied by frequent spells of neurally mediated hypotension (NMH), but this is not always the case. NMH means low blood pressure while standing, caused by a defect in the function of the autonomic nervous system. A minority of patients exhibit no measurable lowering of blood pressure during tilt table testing. Some patients may experience an increase in standing blood pressure due to an abnormal overcompensation of the autonomic nervous system to the orthostatic stress of the upright position.

The brain is the most metabolically active organ in the body and requires a steady supply of oxygen and glucose to maintain healthy function. Although the brain represents only 1-2% of the body's mass, it utilizes 20% of the body's oxygen consumption and 15% of cardiac output. Our brains are thus highly dependent on adequate blood circulation to maintain our sense of health and well being. The thought process, regulation of body temperature, hormone release, and many autonomic systems can be impaired by loss of proper blood pressure control. Our survival is as dependent on adequate blood pressure regulation as on the fundamental process of breathing.

A UCLA medical study found that women tolerate stress better than men, thus the claim by some uninformed doctors that POTS is caused by "stress" rather than an underlying physical disease process is not based on the scientific evidence. If stress caused POTS, then men would develop POTS more often than women, the exact opposite of what accepted statistics indicates is the case. Men have a stronger adrenaline fight or flight reaction to stress than women and are less prone to work out problems with friends and family. Researchers found that women have higher levels of a hormone called oxytocin. "Animals and people with high levels of oxytocin are calmer, more relaxed, more social and less anxious. In several animal species, oxytocin leads to maternal behavior and to affiliation."

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system's regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.

Causes What causes POTS? The answer to that question can be answered with a pie chart showing multiple causes, not by any one line statement. Postural intolerance has been likened to a fever in that it is a symptom which can have many diverse root causes, both central and peripheral. It is extraordinarily easy to induce orthostatic intolerance in human beings, and that is why most mammals have four legs, not just two. Even our close genetic relatives, monkeys, chimpanzees, and apes, do not usually stand erect as humans do. Just becoming dehydrated or overly heated can cause temporary orthostatic intolerance, so it should be no surprise that there are many proven and suspected causes of orthostatic intolerance. Although gaps in our medical knowledge remain, most of the main root causes for the development of POTS have been identified and are listed below as general categories.

Please remember that very little is ever 100% proven in the field of science. Eternal doubt is an intrinsic part of the scientific method. This page passes on the latest theories and accepted "facts," but does not guarantee that better facts and theories will not make some items on this list obsolete in the future.

1) Viral and bacterial infections that damage the autonomic nervous system are a common cause. Patients who develop POTS due to an infection, with no deeper underlying genetic cause, have the best chance for a spontaneous recovery over time.

2) The development of POTS in women after childbearing is very common and may be due to changes in blood volume during pregnancy.

3) Exposure to toxic chemicals which damage the autonomic nervous system can cause POTS. This group includes adverse reactions to prescription drugs. Some Gulf War veterans have developed POTS like symptoms after being exposed to small amounts of nerve gas, insecticides, and inadequately tested experimental drugs.

4) POTS can be caused by genetically inherited neurotransmitter disorders, including disorders of catecholamine production and release, such as Norepinephrine-Transporter Deficiency.

5) POTS can be caused by peripheral nerve damage due to rapid weight loss, diabetes, and alcoholism. Doctors at the Mayo Clinic have identified autoantibodies specific for nicotinic acetylcholine receptors in the autonomic ganglia, which are believed to cause of approximately 10% of all POTS cases. Doctors at Vanderbilt University believe that some POTS cases are caused by a partial sympathetic denervation, especially in the legs.

6) POTS can be a phase in the gradual onset of Shy-Drager Syndrome.

7) Damage to the vagus nerve can be a cause and there have been documented cases of patients developing neurally mediated hypotension and POTS after undergoing radiation treatment to the neck.

8) There is a mixed bag of less common potential causes, both genetic and acquired. Ehlers-Danlos syndrome, a connective tissue disorder which permits veins to dilate excessively, is now an accepted cause of POTS. Essentially anything that can damage the brain stem and important autonomic nervous system structures can cause POTS.


POTS is diagnosed on the basis of heart rate increase and heart waveform signature revealed by electrocardiogram, not on the basis of a drop in blood pressure, as is the case with orthostatic hypotension and neurally mediated hypotension (NMH). Neurally mediated hypotension is commonly associated with POTS, but having NMH is not a prerequisite for a diagnosis of POTS. The secondary symptoms of POTS vary significantly from case to case. The most commonly reported symptoms are listed below.

The length of time POTS patients can comfortably stand varies widely from case to case. Patients may become dizzy, lightheaded, and develop chest and heart pain from standing beyond their limit. Blood pooling in the legs and splanchnic bed (abdomen) may occur, which is felt in the same way you feel water fills your mouth when you get a drink. Shortness of breath, blurry vision, tingling in the legs, sweating, and feelings of heat from increased adrenaline production are common symptoms of orthostatic stress. Some patients pass out frequently, which is dangerous as well as uncomfortable. Many patients experience spells of supine or standing vertigo, but this symptom is dependent on the root cause of the POTS. Remember that POTS itself in not a specific disease like polio, but rather a symptom and a syndrome (a collection of symptoms).

The current prevailing theory is that the heart pain associated with POTS is predominately non-ischemic, but further research may alter this perception. It is believed the left sided heart pain so common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. It is not related to common angina which is usually caused by blocked arteries cutting off the supply of blood to the heart. While uncomfortable and debilitating, this left sided heart pain is not believed to be immediately life threatening.

With POTS and NMH you become lightheaded and weak even before you get a measured crash in blood pressure because the small blood vessels in the brain paradoxically constrict when you are under orthostatic stress. This cerebral vasoconstriction cuts off the blood supply to brain cells while veins in the legs and splanchnic bed are dilated and pooling blood away from your heart. With inadequate filling of the heart's left ventricle and abnormal function of the alpha and beta adrenergic systems, it is no wonder that strange and irregular heart beats (palpitations) are a universal symptom of POTS. These are often referred to as ectopic heartbeats, with frequent premature heartbeats the most common aberration reported.

POTS often generates a temporary rise in blood pressure immediately upon standing due to the rapid acceleration of heart rate. Tachycardia is the body’s defense mechanism against a lack of sufficient venous blood returned to the heart. Blood vessels, particularly veins, can become unnaturally dilated, causing blood pooling in the legs and splanchnic bed. Thus the heart must beat more times in a minute to make up for the reduced blood volume transferred by each beat. If a POTS patient stands up too suddenly, there may be so little blood in the heart that it may collapse upon itself, causing very painful heartbeats. Patients often have measurably low standing pulse pressure, which can be an indicator of venous pooling.

Frequent urination is a common symptom of POTS, NMH, and severe cases of CFS. This problem is sometimes misdiagnosed as diabetes insipidus, which is a disease caused by reduced production of a pituitary hormone called vasopressin. Some POTS patients develop a diabetes insipidus like syndrome which is believed to be caused by somewhat reduced vasopressin output, low blood volume, and disruption of the alpha adrenergic system, which helps the kidneys retain water and sodium.

Reactive hypoglycemia is a common problem for both POTS and CFS patients, and occurs through a complex series of neural and hormonal interactions which are not yet fully understood. The traditional definition of hypoglycemia is an abnormal lowering of blood sugar levels after the body overreacts to carbohydrates with excessive insulin production. Researchers now understand that this lowering of blood sugar levels is not the only cause of symptoms. Recent studies show that when patients with reactive hypoglycemia eat carbohydrates, which cause a sudden increase in blood glucose levels, their bodies abnormally produce excessive amounts of adrenaline and other stress hormones. These stress hormones themselves cause many negative symptoms of their own in addition to the eventual crash in blood glucose levels due to excessive reactive insulin production.

Most patients with POTS have difficulty sleeping, which may result from a number of factors, including abnormally high adrenaline levels caused by increased orthostatic stress (the stress of standing). Central sleep apnea is a problem for some people with POTS, which in some cases may be due to damage to the medulla, which controls important cardiac and respiratory functions. Central sleep apnea causes breathing to temporarily stop while sleeping.

Low grade fevers, mild chills, and general flu like symptoms are common with POTS. This may be explained by a neurologically based loss of control of basic autonomic regulatory systems, an overactive immune system, or abnormally high adrenaline levels effecting body heat production. Many patients have positive anti-nuclear antibody tests (ANA test), which some doctors say is due to high adrenaline levels activating the immune system. Other doctors suggest positive ANA tests may be due to an autoimmune disorder damaging nerve cells. Patients are left in confusion as to which theory to believe.

Chronic fatigue and weakness are common problems for POTS sufferers. Those who have pure POTS, without CFS or significant immune system involvement, generally feel better and have greater postural tolerance despite tachycardia. Many POTS patients have common allergies, uncommon food allergies, and are highly drug and chemical sensitive. Many POTS and CFS patients experience severe night sweats.

Nausea, bloating, and sore intestines are a frequent complaint. The nausea can usually be eliminated by not stressing yourself beyond your capabilities. Bloating is caused by low motility in the intestines. Patients often develop irritable bowel syndrome, which leaves the intestines feeling raw and tender. Difficulty swallowing (dysphagia - pronounced dis-FAY-jee-uh) is also a frequently reported problem.

Numbness in palms and soles is a common symptom of POTS. Legs, arms, and hands are often totally numb upon awakening from sleep. Upper extremity somatosensory evoked potential studies are usually normal in POTS and CFS patients, but this is not always the case. Unusual coldness of the hands is also common and is referred to as acral coldness. Patients frequently experience sporadic itchiness, burning and tingling sensations all over the body, especially at night. Some patients may also have dramatically reduced sweating, which can be tested for through a thermoregulatory sweat test.

Most POTS patients have poor balance, which may be caused by decreased blood flow to the brain and other disturbances in the vestibular system. The patient's root neurological damage may also cause balance problems directly as well as causing the debilitating symptom of orthostatic intolerance. Patients are often unable to pass a drunk test by walking with one foot placed directly in front of the other. An abnormal gait is common. Patients may walk with legs wide apart and feet flared out to the sides as an instinctive adaptive response to increase their stability.

Eye pain is another common problem, as is a feeling of pressure behind the eyes. Patients can become so weak that their eye muscles are easily strained and focusing is difficult. Many POTS and CFS patients see tiny little black dots floating in front of their eyes. This is a problem of the fluid in the eyes which occurs naturally with age, but which can be made dramatically worse by the onset of CFS or POTS.

Supine blood pressure readings are usually normal or below normal in POTS patients. This is in sharp contrast to multiple system atrophy (Shy-Drager syndrome), idiopathic orthostatic hypotension (Bradbury-Eggleston syndrome), and other forms of central autonomic failure typified by low standing blood pressure and high supine blood pressure. Lack of supine hypertension (high blood pressure when lying down) is usually a sign you do not suffer from the classic forms of central autonomic failure.

Most POTS patients will only have a few of the symptoms listed here, while others will have unique symptoms all their own. A poor memory is a major symptom of POTS, and many patients will have a difficult time just remembering their own symptoms while conversing with doctors. The total damage to the autonomic nervous system POTS sufferers experience, called dysautonomia, causes what Dr. David Robertson of Vanderbilt University refers to as “mild autonomic abnormalities.” These symptoms, such as frequent urination and reactive hypoglycemia, are not life threatening, but they are quality of life destroying.

People who do not have problems with low blood pressure have a difficult time understanding the concept of orthostatic stress. They fail to realize that blood pressure is as basic and essential a bodily function as breathing. How would you feel if your breathing were constricted for even one minute? Low blood pressure can cause an enormous amount of symptoms and suffering, but those who don’t have it often miss that fundamental point. Some patients with POTS have such a damaged regulatory system that they may get paradoxical wild swings in blood pressure from below 50 to over 200. Complexly, POTS can be a low and high blood pressure problem combined.

Treatment Treating patients with POTS and neurally mediated hypotension is often very difficult. When you stand up your body should automatically constrict blood vessels to help maintain blood pressure in the face of increased orthostatic stress. In the standing position, gravity wants to pull your blood down to your feet. When you lie down, your body should automatically dilate blood vessels as gravity is no longer a force to fight against. With POTS this automatic regulatory system breaks down and blood begins to pool in places where it should be flowing rapidly. The heart is then stressed with the added work of trying to pull all that blood uphill without help from the much needed alpha adrenergic constriction process.

Non-drug treatments have low risk and high rewards

Adding lots of extra salt to the diet can increase both blood volume and blood pressure by increasing fluid retention. One must increase fluid intake for salt to effectively expand blood volume. The use of a large, stainless steel chef's style salt shaker can be helpful. A high salt diet should only be tried under the recommendation and supervision of your doctor.

Pouring lots on ordinary table salt on food works better for most people than the use of salt tablets. Salt tablets can irritate the stomach, cause vomiting, and tends to centralize body fluids in the digestive tract, which is not good for either blood volume or blood pressure. For most people salt goes into the human body more smoothly and easily when mixed with food.

Patients with POTS and/or neurally mediated hypotension should avoid garlic and nitrates in food, which lower blood pressure. Most patients also need to give up alcohol, coffee, tea, and adrenaline stimulating herbs like ginseng. Try to avoid eating heavy meals as overloading the stomach decreases orthostatic tolerance by drawing blood to the digestive tract and away from main arteries which feed the brain.

Make sure you exercise every day when you are able. Try to keep your muscles alive, as they produce the natural vasoconstricting hormone norepinephrine. Good muscle tone, especially in the legs, helps limit abnormal blood vessel dilation and blood pooling. Severely affected patients may find any amount of exercise difficult, but one can slowly increase activity over time as you improve. Even just ten, two minute walks a day adds up to twenty minutes of walking, which can help maintain vital muscle mass and thus increase your orthostatic tolerance.

During the day it is better to rest in a recliner chair rather than lying in bed, as constant bed rest decreases orthostatic tolerance dramatically. Astronauts often develop a temporary form of orthostatic tachycardia upon returning to earth due to the deconditioning effects of weightlessness, which are quite similar to prolonged bed rest. When muscle mass is lost it is difficult to regain, therefore it is very important to avoid becoming deconditioned through inactivity.

Activities that can aggravate POTS symptoms include working with your arms over your head, lifting heavy objects, and climbing stairs. Warm temperatures have an especially negative effect on the exercise tolerance of POTS patients, as heat dilates blood vessels and diverts blood to the skin, thus reducing blood flow in key arteries that feed the brain. Air conditioning during hot weather is essential for most POTS patients. A few patients claim benefit from wearing medical support hose, which can be obtained from medical supply stores on the advice of a qualified physician. These support garments look like long underwear and can reduce vasodilation in the legs by applying mild pressure. Many patients, however, find them ineffective and/or uncomfortable to wear.

Meditation may help some patients reduce stress, feel more rested and alert, and often has a mild analgesic effect, reducing the perception of bodily aches and pains. Meditation will not cure POTS or increase your comfortable standing time. Meditation is a possible alternative to the use of sleep aids and sedatives, which often increase vasodilation and reduce orthostatic tolerance. This Recliner Chair Meditation Technique may help patients who have the time and temperament for long periods of quiet sitting.

It is impossible to replace the body’s dynamic, constantly changing system for controlling blood pressure with something as static as a simple dose of chemicals. Drug therapy for POTS and neurally mediated hypotension often works much better in theory than in practice. Patients who have neurally mediated hypotension or POTS due to Chronic Fatigue Syndrome are rarely helped by drug therapy, and often have bad drug reactions, ranging from mild to very serious. Patients with a history of bad drug reactions should be extremely cautious when considering drug therapy for POTS.

Note - Below are brief descriptions of some commonly used drugs for the treatment of POTS. This partial list is not a recommendation for any treatment, just the factual reporting of some of the drugs doctors most commonly prescribe. I strongly urge all POTS patients to see specialists in the field and not ask ordinary doctors for treatment with these drugs.

Florinef is a common drug for the treatment of POTS and NMH. It is used to stimulate the body’s retention of salt and water and it also has a very small alpha agonist effect (vasoconstricting effect). The list of Florinef’s known potential side effects is hair raising, but at the small doses prescribed Florinef is not unusually dangerous. Some patients have had bad reactions to Florinef, but that is true of all drugs. Florinef makes you expel potassium so you must take potassium supplements to keep in balance.

Midodrine is a useful drug for many patients, and is probably the most effective alpha agonist currently available. Alpha agonists work by constricting blood vessels, thus reducing blood pooling in the lower part of the body. Sold in the United States as ProAmitine, Midodrine has the advantages of being long lasting and is most like the body’s own natural vasoconstricting hormones in effect. Midodrine is a large molecule that does not pass through the blood brain barrier, which is helpful for patients who are drug sensitive. Because you do not want your blood vessels constricted when you are supine, it is essential that alpha agonists should not be used before bedtime. Supine hypertension is not only uncomfortable, it is dangerous. Alpha agonists are usually only prescribed for those patients who are not seriously overweight, who have consistently low blood pressure, and whose main problem is vasodilation. Florinef is usually tried first and Midodrine introduced for those who do not respond sufficiently to expansion of blood volume.

Some patients have an abnormal supersensitivity to alpha agonists which can present serious problems during treatment. Supersensitivity to alpha agonists can be caused by impaired amine uptake in the nerve endings of alpha receptors (denervation supersensitivity). Abnormal sensitivity can also be produced by a prolonged lack of norepinephrine release from sympathetic nerve endings, which leads to enhanced receptor responsivity (decentralization supersensitivity). These conditions usually produce a two to five times increase in sensitivity level, but there is a small subset of patients who are hundreds of times more sensitive than normal. For these patients vasoconstricting alpha agonist drugs are dangerous to use because of their sheer potency. If your physician prescribes any alpha agonist drug, consult with him about taking a very small test dose first in order to gauge your sensitivity level.

Beta blockers are used by many doctors to treat POTS and neurally mediated hypotension (NMH). I have heard of more bad drug reactions to beta blockers than any other drug, especially for those patients who have NMH secondary to Chronic Fatigue Syndrome. Beta blockers release histamines and should usually not be prescribed for patients who have significant allergies or asthma. In a number of cases, beta blockers have actually caused the onset of POTS. Some patients have found beta blockers to be helpful, however, especially those patients who develop POTS because of an overly sensitive beta adrenergic system. For these sensitive patients only very low doses of beta blockers are usually required.

Celexa (citalopram hydrobromide) is a selective serotonin reuptake inhibitor similar to Paxil, Zoloft, and Prozac, but with the claim of fewer side effects and less potential for negative drug interactions. Serotonin reuptake inhibitors have been used for many years to treat neurally mediated hypotension and syncope (passing out). The mechanism through which central serotonin levels affect blood pressure and heart rate has not been fully mapped out. The net effect of Celexa appears to be to increase nerve communication and stimulation of the standing vasoconstriction reflex. This limits venous blood pooling and increases orthostatic tolerance. Celexa and the other serotonin reuptake inhibitors are known to increase norepinephrine release to varying degrees.

Please note - I have never taken Celexa and do not personally recommend any specific drug or other medical treatment. This page simply passes on general information which is received from dozens of doctors and hundreds of patients. For recommendations of treatment you must see a specialist. I myself do not take any drugs for my chronic orthostatic intolerance.
Beware the teddy bear effect
Much has been made of the "placebo effect" in medicine, where a patient derives benefit from a pill, not through any chemical action of the medication, but through the purely mental belief that the pill is doing the patient some good. It is my experience that this placebo effect has little affect on POTS patients, but many patients do fall victim to what I call the teddy bear effect. The drugs used to treat POTS are not like antibiotics or anti-cancer agents. They do not "cure" anything. At best they can help your body cope with symptoms of a dysfunctional circulatory system, thus making you feel and function better. If the drugs do not make you feel and function better, then consult with your doctor about stop taking the pills.

All drugs have side effects, some of which are obvious, while others may build up slowly over time. If you have chronic high blood pressure and your doctor tells you to stick with a drug, he is trying to save your life. With POTS the situation is usually quite different. If the drug works, you usually feel the benefit fairly quickly, have more energy, have longer comfortable standing time, and generally feel better.

You would be surprised how many letters I receive from patients who keep taking drugs that they claim only makes them feel worse. They continue to take the pills because they want to do something, anything, to fight this devastating illness. For them, taking a medication may be comforting like a teddy bear, even if that pill has no discernible benefit, not even a positive placebo effect. Generally speaking, patients should take a minimum number of drugs and only those drugs which have proven benefit. I hear of some patients taking four or more drugs a day, but ask yourself this. If any one of them really worked, or any reasonable combination of two drugs taken for synergistic effect really worked, then why would they need to take all the rest? Over-medication is a serious potential problem, not just for POTS, but for any serious illness that has no swift or easy cure.

It has also come to my attention that some doctors continue to advise POTS and NMH patients that sleeping with the heads of their beds slightly elevated at night will improve their orthostatic tolerance. This method was originally developed to help patients with classic orthostatic hypotension diseases, such as Shy-Drager syndrome (multiple system atrophy) and Bradbury-Eggleston syndrome (idiopathic orthostatic hypotension). Those diseases usually cause supine hypertension (high blood pressure while lying down). It was simply assumed, without clinical studies, that elevating the head of the bed would help those with other orthostatic intolerance conditions as well.

There is now documented evidence to suggest that some percentage of POTS and NMH patients experience supine hypotension (low blood pressure while lying down), which often manifests itself after the patient falls asleep. If your blood pressure drops to below normal levels while sleeping, the last thing you want to do is to sleep with the head of your bed raised, thus draining even more blood and vital oxygen from your brain while you are unconscious. It is therefore advisable that patients only elevate the head of their bed at night if they have proven supine hypertension.

Finding Help It is vital that you obtain proper professional medical help and do not try to diagnose or treat yourself. The National Dysautonomia Research Foundation (a wonderful organization which I am not affiliated with) has a list of doctors who are educated in the diagnosis and treatment of POTS at: http://www.ndrf.org/physicia.htm. Anyone interested in POTS can also read the following medical papers and books. Some of the medical papers are from common medical journals, which can be obtained from local public, hospital, or college libraries. Please do not ask me for copies.

"The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management" - Satish R Raj MD MSCI, Indian Pacing Electrophysiol. J. 2006;6(2):84-99

"Orthostatic Intolerance and Orthostatic Tachycardia," guest editor of special symposium issue on orthostatic intolerance David Robertson, M.D., The American Journal of Medical Sciences February 1999;317:#2: 75-124

"The Fainting Phenomenon: Understanding Why People Faint and What Can Be Done About It," by Blair P. Grubb, MD, and Mary McMann, MPH. This book is available on-line through the NDRF Reference Page or through amazon.com.


If you read the above mentioned articles, you will know more about POTS and low blood pressure than your average cardiologist or neurologist. Most doctors know about high blood pressure, not low blood pressure, and the first thing uninformed doctors will usually do is blame the patient for the symptoms. I strongly suggest you consult an expert in the field instead of trying to educate your local doctor. The drugs used to treat POTS can be dangerous and an experienced physician is needed to determine which drug or treatment is best for the patient.

POTS is recognized as a physical, usually neurological based disorder by every major medical university in America. Chronic Fatigue Syndrome is currently more difficult to diagnose and thus skepticism in the medical community remains. Research by Dr. Jonathan Kerr, Dr. Arnold Peckerman, and the Center for Disease Control has found credible evidence of serious measurable physical abnormalities in patients with Chronic Fatigue Syndrome. These abnormalities include abnormalities in heart function and blood circulation, and abnormalities in gene expression in white blood cells and in brain cells that regulate metabolic and immune system response to stress, infection, and chemical exposure. Doctors ridiculed people with MS, diabetes, and even polio for decades before a critical mass of evidence proved they were real diseases. The same psychological torture (see Mind Experiment for Doctors) is now being inflicted on patients with Chronic Fatigue Syndrome. It is essential that medical schools teach students humanity and humility instead of just teaching them how to prescribe drugs and mend bones.

If you find any important research not mentioned on this page, please let me know. Please read the brief Frequently Asked Questions page before you write me.

Christopher Calder email = calderhouse at yahoo.com

Useful POTS links

National Dysautonomia Research Foundation (NDRF)

http://www.ndrf.org/ - The NDRF has doctors list, discussion forum, and general information.

http://www.nymc.edu/fhp/centers/syncope/POTS.htm - Center For Hypotension

"The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management" - excellent article

http://content.nejm.org/cgi/content/abstract/343/14/1008 - The Neuropathic Postural Tachycardia Syndrome

http://content.nejm.org/cgi/content/abstract/343/12/847 - Autoantibodies to Ganglionic Acetylcholine Receptors in Autoimmune Autonomic Neuropathies

http://content.nejm.org/cgi/content/abstract/342/8/541 - Norepinephrine-Transporter Deficiency

Chronic Fatigue Syndrome links

Gene Expression Subtypes in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

CFS as Heart Failure Secondary to Mitochondrial Malfunction

http://www.cfids-cab.org/MESA/cardiac-1.html - Abnormal impedance cardiography predicts symptoms in chronic fatigue syndrome

http://www.newscientist.com/channel/health/mg18725093.700 - European doctor also finds CFS genetic abnormalities in white blood cells

http://www.cfids.org/ - CFIDS Association of America

Monday, August 16, 2010

Blues Night

Hi Everyone.
Truth be told, overall, things have felt better lately than they have in a long time. (I know, why don't I blog when I'm feeling like THAT? lol.) But tonight, to be honest, I've got a case of the blues. I think I watched too much reality TV today. It was no use, I wasn't feeling well. I think I did too much the last couple of days. I've been fighting an infection all last week, barely made my outing to the County Fair Friday, then spent Saturday pushing mentally and physically cleaning as much as I could for a visit from my brother and his girlfriend that never happened.

Getting up was excruciating, as it has been most of the week; pain, stiffness, and the vice-like head rushes from low orthostatic blood pressure that seem to come on worse any time I'm fighting an infection requiring antibiotics...(Thursday I had one so bad it made me nauseous, not sure that's ever happened before.)

Plus, before I got up I got the news that all my effort the day before had been for nothing. I've always been a planner, and things like that have always irked me, but it's even worse now, because it takes extra effort to psych myself up to do something as hard as cleaning is for me, and for pushing myself to prepare and be a good hostess and ignore any discomfort or fatigue...I concentrate on the good and end up looking forward to the visit so much...and then, poof. My bubble gets burst.

Honestly, after I got up, even after getting dressed and going to the store (if I'm going to feel okay, going out usually gets me functioning) but when I got back all I wanted to do was crawl into bed and curl up, pulling the sheets up to my chinny-chin-chin...

So that's how I ended up watching all the Reality TV I once scorned. Lately, I've found it entertaining, I guess living the life I can't have vicariously through some silly but lucky celebutant-ites can be amusing. But now I suddenly feel blue and dissatisfied, because somehow, I started envying them their jobs, travels, sisterly and relationship issues. Somewhere along the way I forgot that the sky is no longer the limit for me, and that I can't do anything I want just by setting my mind to it anymore. (Don't try and tell me otherwise. I'm a stubborn, determined girl, if that was enough I wouldn't be writing this. I believe I have a different lesson to learn, perhaps patience, so I'm trying to take that route for now. Plus I'm tired in more ways than I can count of attempting to defy my limitations and failing miserably again and again.)

Truly, this week has been rough. I've been reminded that a pretty simple infection takes a huge toll on me. I find the fear creeping up on me that maybe stopping the Epivir was a bad idea, and left wondering, what if this is just the beginning of another era like last year's, where I suffer from infection after infection, getting weaker and sicker, feeling more alone and depressed, and less able to take care of the little things bits of daily life, that keep my need to be around people, and feel slightly productive fed and happy.

Which reminds me of an article I just found posted on the NFA Facebook page about Control, and how these illnesses take away your control, and if you can find something to control, you will feel better. Truly, it feels like there's nothing left I can control, and while that advice sounded really good at the time, I am reminded of another bit of wisdom: control is an illusion. I think at the moment I feel a bit freer reminding myself of the truth in that, and letting go...

Tuesday, July 20, 2010

Energy after Epivir Discontinuation...

A couple of weeks ago I ran out of Epivir. I made sure to taper off, as I knew I was running out and more wouldn't be available quickly. As I did, my energy, which has been wanting all year long, seemed to bounce back. Around the same time, I re-started a once daily 1/2 dose of Tramadol, which I'd previously used with success to get me going past the aches, stiffness, and sluggishness of an FM/CFS morning. I also began a supplement called Tre-en-en, as well as Methylcobalamin (an readily absorbable version of Vitamin B-12). I wasn't sure which of these was having the effect, or if it was simply the absence of the Epivir, but I now suspect the energy and stamina may be due in large part to the B-12. (I'm a lacto-ovo vegetarian of 10 years, and I've had a borderline anemic Iron level for quite awhile.)
Whatever it is, am I am infinitely grateful for the energy. The list of things that need to be done is endless and it gives me so much joy to accomplish so much, even if they are mainly little things, like phone calls, errands, and tidying up around the house. Accomplishment is a heady reward.

I am happy to report that my sleep is improving as well. I regularly fall asleep no later than 2:30am, and sometimes as early as 1:30am, a huge difference from my former 4-6am bedtime. Which means I'm waking up earlier too. I'm not exactly leaping out of bed, but I find myself going as soon as I get up much of the time, and able to keep it up for a bit...

Not sure if I had previously reported it, but I got scared off from the Tagamet experiment when I began to wake up groggy and spend the day extremely sleepy. (It knocked me out at night, also.) I've tried it again since I went off of Epivir, and found that it doesn't seem to have the same effect on my energy level and sleepiness. (Maybe makes me a little sleepy at night, and if today is any indication, tones down the energy, but nothing like before.)

Things are going better overall than they have in a long time, and I can almost say that I am ok, closer to actually brushing against happiness than I have been in a very long time. I have truly been blessed this year, with progress in my emotional and physical well-being and I'm starting to feel like a worthwhile person again; part of "the world" as I tend to think of it, rather than an outsider looking in...

To thank, I have my family, their love and generosity, and I like to think, maybe Reiki or the fates smiling upon me and mine, because all around me the wheels that were frozen for such a long time seem to be turning things in the right direction once again. It so lifts my spirits to see those around me moving onward and upwards...even the darn (i.e. beloved) cat is doing well...and I got a notice from the Disability people that they are requesting any further info, so I'm guessing they may be looking to finally move forward. Yup, there is much hope to be had these days and maybe soon, life can finally, truly, be continued...Wish me luck!

Saturday, June 26, 2010

Postprandial Hypotension

Alright folks. So today is a new one. Well, not BRAND new, but a recent development. Instead of my usual tachycardia, I seem to be experiencing bradycardia. My blood pressure is 91/58, pulse 67, my chest feels tight, it's harder than usual to breathe, and I feel like someone has my heart in their hands and is squeezing it just a little too tightly and too slowly. Fun times. Kinda feels like someone's got there hands around my neck squeezing a bit, too.

I'm so tired of all these rarish symptoms. It feels so uncomfortable, a bit scary even, and there's not likely anyone to call for help or reassurance who isn't likely to end up making one feel like a raving hypochodriac.

It seems that the trigger (aside from going of the oxymatrine supplement) is eating, which would likely make it something I believe is called "postprandial hypotension" but that is even more infuriating, as good food is one of the few things available to cheer me up. Sometimes I swear I wish I had a punching bag, I get so angry and feel so helpless and tired of all this.

I ended up not having to do the family thing at least. The person I was supposed to "help", though the truth is the help was going to be moral support, because I'm definitely not up to moving, and I would have just been uncomfortable, felt guilty, and probably ended up making myself good and sick-er by forcing myself to help. Hell, forcing myself to make the 40 minute drive may have done it, I've been so exhausted lately. Yes, another fun facet of this illness. The "but you don't look sick" phenomenon. I tried to feel out the possibility of cancelling yesterday, and found myself being attacked. I was told I was exaggerating how bad I felt, and that I was just lazy and all I wanted to do was lie in bed and watch TV and be online. Nevermind that I'm actually compelled to lie down by overwhelming exhaustion, or that I actually start to lose feeling in my feet if I even sit at my desktop PC for long, and sometimes my head begins to get cold, and my hands turn icy, or that I feel ill and my back will begin to hurt so much I can hardly breathe. Nevermind that it's taking me days lately to recover from the 40 minute trip North. Or that despite having to lie down frequently, I suffer from that "tired but wired" phenomenon and would go crazy without the distractions of Television and Laptop (what am I supposed to do, stare at the ceiling?)
I suppose I could take some solace in the fact that this accusation was likely made purely to spite me, but that almost makes it worse because this is a person I should be able to trust with my worst insecurities, burdens, weaknesses, and disappointments, and yet they use these as weapons against me, and for what?

Well, blessed sleep is creeping up and I'll be happy to go sink into its forgiving oblivion. Lest my heart leap back into my throat. (Can you tell I've been reading a novel that takes place in the Middle Ages, in England?)

Friday, June 25, 2010

Day 1 Cimetidine

Took my first dose yesterday, and I think it definitely interacted with some of my other night-time medications, as I seemed to feel extra woozy. Went to bed at a decent hour (for me, 2:30am) but woke up extremely tired at 10am. Went back to bed. Slept past noon, and was still so tired/groggy and it was such a huge battle to get out of bed, I decided to compromise by not going back to sleep, but staying in bed and trying to read. Managed that for a bit, and finally got up after around an hour or so, but already I'm feeling very tired and lusting after my bed...I have something important to do tomorrow, family stuff, so I think I may lay off this particular medication experiment for a couple of days until that's done with and recovered from, and then resume next week at half the dose. (Current dose was 400 mg 2x daily. Perhaps I took the 1st two doses too close together though?)

Re-read and read some more of the posts on the aboutmecfs.org forums (http://www.forums.aboutmecfs.org/showthread.php?2077-Tagamet-(cimetidine)-for-CFIDS-(worked-for-me)/page6) and saw some people definitely felt like they had a Herxheimer Reaction (healing crisis, dieoff symptoms, etc.) and that some people improved on a very low dose. The book I posted the link to earlier also says that improvement was reported by some people taking only a sliver of Cimetidine, so...

Well, back to bed for a nap, or whatever type of rest may come, because I will have to attempt to tidy up my bedroom, at least, for tomorrow, among other preparations...and besides feeling tired and drowsy, my Circulatory/Dysautonomic problems are rearing their ugly head, and being supine is the only remedy for that.
Which reminds me, my doctor mentioned that it remains to be seen whether those problems are permanent damage to the Autonomic Nervous System, or if they will go away if the virus is successfully treated. I truly hope it's the latter, because if not, I'm not sure there's much point in getting better, because those encompass most of what disables me currently...

Thursday, June 24, 2010

Doctor's Visit, Cimetidine vs. the Immune System

I've been trying to get around to posting since Monday, but it seems like the trip up to L.A. is taking more and more out of me lately.
I seem to spend days recovering my energy.
Anyhow, it went wonderfully. My doctor was a sweetheart, it didn't turn out as expensive as I'd feared, and I came away with a new treatment option.

Unfortunately, the trip up there took a bit out of me as well, plus with brain fog rising back up lately, I just couldn't concentrate on some very interesting info the doctor shared with me on what he thought of XMRV and some tests being done. I remember the info, I just can't seem to make it fit together, so I figure if I come across something related later on, it will probably make sense.

As for the "new" treatment, he suggested I try, of all things, Tagamet, aka cimetidine. Normally used as an antacid, it turns out cimetidine has been used off-label to modulate the immune system, specifically in the treatment of viruses that cause warts. The key word of course, being "viruses". (I can hardly believe I'd never heard this one before!)
But yes, I did some research, and my findings were quite interesting.

So my plan is to get back on the oxymatrine/herbal supplement I was taking (as I've realized that the brain fog began to get worse about the time I stopped it, and with a little prodding from the doc, that the aches & pains & fatigue and feverishness increased around the same time) keep taking the lamivudine (anti-viral commonly used in HIV & Hepatitis which has shown some effectiveness against strains of the Coxsackie B virus) and start the cimetidine. And once again, I will wait. And see.
And I will try and do it patiently. :)

Here are some links regarding Cimetidine and CFS/Viruses/Immune System Function. Also, I was quite interested to see that it has also been used as a treatment for such illnesses as PCOS (Polycystic Ovary Syndrome) Fibroids, Endometriosis, and other "estrogen dominant" disorders, as well as for Interstitial Cystitis (per Wikipedia, source cited). I'm curious to see as well, if it helps control my allergies (being a histamine blocker) and helps my stomach at all. (I also read a tidbit somewhere about it being good to take probiotics with an acid blocking medication for better effectiveness.) Very interesting stuff...

Tagamet on Wikipedia
(before you scoff, it has plenty of citations)

Tagamet and CFS

More info on Cimetidine
AboutMeCFS Forum - Tagamet

Sunday, June 20, 2010

A long one

Another holiday down. I made it through, not scott-free; got off my diet (which incidentally, I can't wait to be back on, although I couldn't help but indulge in one last biscuit!) and felt ill most of the day, which I pushed through. (Usually I need to sit in my recliner after I eat or I feel sick, it's all related to the Dysautonomia, not enough blood volume, blood gets diverted to stomach for digestion, or there's not enough to get there, which either leads to fatigue, possibly cold extremities, and tachycardia, or just plain feeling ill, or problems w/digestion and feeling sick. Worse when off the B.E.D. diet because regular food isn't as easy on the tummy; plus carbs & sugar raise blood sugar causing more ill feelings.)
Of course, couldn't get by without a little family dysfunction either. Suffice it to say I don't do well with being screamed at by someone who should be treating me with love and respect, especially after I've spent a couple hours trying not to get irritated about having to make sure the day revolves around Dad, not around anyone else. Another reason I'm dying to have my own family, just to have something go nicely and not need people who would ruin the fun to feel like I'm part of a family. Holidays and family mean so much more to me now that I've been sick for so long and it's constantly breaking my heart that even that seems to be out of my control. I'm not perfect, but at this point in time, with everything I've been through the last few years, I just can't seem to muster the serenity to not let my buttons be pushed, especially when someone acts selfishly and nonsensically and rubs salt in the wound called "life is NOT fair, and you really don't have control over anything you thought you would, even the closest people to you are never going to be there for you in the way you would like". Expectations. They're killer. Even worse if you're a writer at heart, and you thought in your head that the story had already been written and everything was supposed to happen just SO. Stories are a writer's babies, and we guard them jealously. But I've had to keep letting go of pieces of the story, as it seems The Editor keeps making shocking changes to (in my mind) the most key plotlines! Now, I don't mind a few liberties being taken, but for goodness' sake, don't throw the entire manuscript in the trash! ;)

Speaking of writing...I feel like I'm getting closer to overcoming the panic that inevitably pops up when I think about getting back to my novel. But I still feel pretty unfocused, overwhelmed, and uncentered, too much noise blocking my soul from connecting to the inspiration. But it's getting better. Maybe when I get back from my July tour of friends who will let me crash at their pads I will have managed to let go of some of the emotional pain that I know is the main obstacle. For now it overwhelms me to the point that I know it is impairing my healing, is part of what I need to heal in order to heal. But nothing to do but try the best I can to overcome it without putting pressure on myself.

To distract myself further, and hopefully get to that place more easily, I've decided to take a class. It's not a required course (frivolous, I know, and worse yet when I'm so close to being at the point where I could finally transfer to a University, but I have my reasons)and I've chosen it solely for the purpose of engaging my sometime Fibro-addled brain, and bringing enjoyment, hopefully spurring creativity and boosting my confidence. (Last time I took classes, I practically ended up having a meltdown...I was miserably sick and kept waiting for a good day to do my work, but they were too few and far between, leading to the stress of trying to finish coursework at the last minute, while STILL feeling unwell, and coupled with being extremely worn out from at least a year of struggling to keep a roof over my head and the merciless self-judgement of myself for yet another failure. Abject failure being something I wasn't very familiar with before I became ill...)
SO yes, I will be taking a course, but for fun! And I refuse to worry about how it would look on my transcript if I can't finish it or don't do well...(Partly because the subject matter leaves little room for it!) Yes, a course on Latin American Culture & Literature (taught in Spanish) is as probably as close to Heaven as I can get in a classroom, so we shall see...I don't think even a professor obsessed with symbolism could ruin a course like that, as long as it contains at least some Marquez and Allende.

In other news, I have a doctor's appointment tomorrow, with a certain well-known ID doctor who treats CFS. I haven't managed to see him since I lost my insurance, so I'm nervous both because I'm afraid of the cost, and because I missed my last two appointments and stopped taking one of the medications he had me on. $40 a unit suddenly overwhelmed me...along with the cost of my usual allergy supplements and some supplements I added in an attempt to boost my adrenals and stop feeling so overwhelmed and stressed out for no good reason. (Or perhaps with good reason but that I should have adjusted to long ago.) I'm thinking I may have to find a way to go back on them though, because I've definitely noticed a marked decrease in cognitive function (I found myself having to do this thing where I have to stop and visualize putting ideas or steps in order before I can verbalize them, because I can't seem to organize them enough to do it otherwise and end up tongue-tied. What better form of torture for someone who prides themselves on succintness?) and now that I think of it, my heart has been bothering me more than usual since I discontinued it as well...

Sadly, I doubt this doctor can do anything more for me, but he is probably the most reputable ally I have as far as proving my SSDI case goes. Plus, one of the experimental treatments he put me on has improved my immune system noticeably. It's not helping me get rid of the CFS, I don't think, but it has definitely put an end to getting sick with various infections several times a year, for which I'm very thankful...

So wish me luck...

Wednesday, June 16, 2010

The Temp Sensitivity Swings Both Ways!

I'm in Southern California, and have found myself feeling pretty let down by the weather so far this year! Very few sunny days. 2 in a row this week, and I feel lucky! Yes, I did say I live in California! But that has happened before, and just when I was getting comfortable enough to turn off the thermostat, it got cold again!
Not drastically, but enough so that I found myself suddenly waking up very uncomfortable and achey on a regular basis (to the point of not wanting to move) something that hadn't happened since late last Fall, when I realized turning the thermostat up to around 72 degrees kept me from having to wake up to a subtle but all-encompassing ache and discomfort every morning.

Yup, you may not read it in many places, but those of us with Fibromyalgia/or CFS will tell you, we are very sensitive to temperature.

Now, if this sunshine continues, the problem begins to be the opposite, as I found this morning...Just a slight bit too warm, and I wake up feeling feverish and groggy. It doesn't take much...I'd bet it wasn't more than 77 degrees in there, but it was enough to make me wake up and groggily scramble to turn on the fan!

Still, I so hope to be able to enjoy some sun this summer! Once I cooled down, that was what I most wanted to do today. Like last summer, to make up for the lack of sun the year before, I decided to use a self-tanner yesterday. (No, no pricey products for me, my trusty self tanner is a generic version of Neutrogena's from every broke Fibrogrrl's fav store, the 99 cents Only Store, lol. It works great though.)

I woke up today with a glorious simulated tan...and I felt poolside-ready. Only problem? No car!!!!

I contemplated riding my bike to the pool, but had too much to take, wasn't sure I'd make it or if I'd be up for the ride home later if I did. So I hoped for the best. And hoped. And hoped! Dad didn't get home till nearly 5, and by then there was a very cool breeze outside, and I was feeling exhausted. (Which sucks even worse when you've not done a thing to earn it!)

I am counting the days until July. In July I'm taking off! I've been planning since May... I just can't take how stressed I get here, how lonely and stifled I feel. You'd think not working I could at least get to take advantage of it, but that's seemingly impossible w/o my car. Case in point, went to visit my Mom this week. Was dead tired. Hardly managed to do any of what she needed/I wanted/she wanted to do...and then I was bone dead tired and couldn't bear to drive home Sunday night. So I stayed, but anxious the entire time knowing I had to get home.
So I'm stuck here, home alone in a Sr. Community, with not much to do but get tired, which is a bummer because if I'm going to feel miserably tired I'd at least like to have it broken up by spending some time around friends or other family members! As it is, w/the time I have to do that in a leisurely manner, I might as well be working. Which leaves me more time to think about that, and fight off many other sour thoughts, lol. I mean, I'm not talking going out & partying w/my friends & staying over at my girlfriend's. Those days are long over. It'd just be nice to be able to visit friends & family who live a little further away & enjoy it.

Anyhow, so I was feeling particularly stressed (about certain chaotic things that are out of my control, about being "exiled" in the OC, and dying for a breath of fresh air outside these suffocating walls) and decided, if what it will probably take to get my car "back" (ah yes, my Dad lets me live with him, but c'mon a month that turns into 6+ twice, and 50k+ miles on the only item of value I have left? It's a bit much. And makes me sad, and angry, and is another reason I need to not be here, so I can quit dealing with that sort of insanity and hating my body even more for letting me down and being angry at the world, myself, and stuff...ahh, rambling, but see what I mean?) I need a vacation, even if it means the dreaded couch-surfing I moved here to avoid...At least it will be willingly...and hopefully, even with the increasing brain fog of late, and the oversensitive nervous system, it will do me some good to be around people going about their daily business. (These days, I'm mostly over the huge complex I had about not being able to work, but I still find myself feeling like a bit of an outcast and being around people going about their daily business seems ridiculously enjoyable! Seriously! Take me with you to pick up the kids from school, or let me hang out while you run some errand, go to the park/mall/etc. and wooo! I'm part of the world! lol. Silly but true.)What I wouldn't give to live around the corner from my cousins who have kids and help them out sometimes. I guess if I can't live my own life, at least I could be part of theirs...

Ah, but things are looking steadily up...the more time goes by the less time I have to wait for my SSDI case to be approved, even if it's anywhere from 1 month to 1 year, I'm closer. And then I will have money to start putting my life in order, making everything just so...(i.e. allow my inner anal freak to organize things "how they're supposed to be") or at least as close as to what I'd planned as I wanted, or the modified chronic illness-accommodated version of it. I can be on my own again, I can seek the appropriate treatments to improve my health, I can find a way to break my life free of this ice block it's been caught in and move forward towards my future, whatever it contains...a degree so I can be a "sexy librarian" (lol! j/k!)or start writing articles on health, music, or that book I can't seem to get out; some foster kids to adopt or just love and hopefully help guide onto a good path, or just a good if somewhat still chronically health-challenged life filled with good, positive people who can be my "tribe"...Definitely need one of those :)

Friday, May 28, 2010

Holidays, Dreams

Had fun chatting with my Aunt as I was taking her to the airport.

Fatigue is way better today. Yesterday was killer. I got showed what's what for saying FM doesn't bug me much these days! Achy, burning, oversensitive muscles. Big time overactive pain receptors, ugh. I ended up in warm, loose clothing (just the sensation of the straps from a loose tank top seem to overwhelm my nervous system during flares like these) slathered in smelly pain cream and doggedly sitting on my shiatsu massager pad trying to get the muscles untangled, lymph fluid moving and whatever else it does that helps. It was a close call between taking my nightly muscle relaxer a little early and taking a painkiller, because I couldn't handle the slightest sensation anymore but I decided to go w/the muscle relaxer and it was the right choice. That and becoming obsessed with a website called faceinhole.com , where I found out I look pretty great in Evangeline Lily's body!

On the way back from the airport, I got a little wistful. I could sense something in the air that reminded me it was a holiday weekend. Formerly one of my favorite holiday weekends, GREAT memories of Memorial Day weekend at my former L.A. Beach City home. Ah, yesss. Suddenly I realized maybe I did care that I don't have plans.
And once again, that desire to LIVE life to the fullest (which used to be a continuous thing) surged up and sent my spirits crashing down. I started imagining the people in the cars whizzing by me on the freeway, their occupants rushing home to get grab their bags for getaways with friends and lovers, to Vegas, the river, various lakes. Getting ready for barbeques with friends and family, days at the beach with kids and friends...bonfires, parties, beach festivals, outdoor concerts, dollar beer specials at the pier... Suddenly it was hard to remember that it had been my choice to treat this like any other weekend and lay low at home. I felt desperately blue and had an overwhelming urge to flee to L.A. But really, I'm not up for all that would entail...

I know my day will come. At the very least 3 day cruises to relax and renew in the glorious sea breeze. Ideally, a good man and some kids to love to death (the man is expendable, the kids are not) or alternately a happy home living within my means in a South American country (I'm eligible for dual citizenship in two countries, and am thinking of adopting there if things go as I hope. I would have a hard time living on Disability here if I don't get well enough to work, but there my income would be multiplied and I could live comfortably, in a house, with domestic help for the house and the kids. I speak Spanish well enough, though Fibrofog makes it a bit of a headache...I could be happy with that though.) The possibilities, albeit dwindling slowly, are still hopeful. (Another nice scenario is finishing school, getting my M.A. in Library Science, and having a nice, quiet job a Reference Librarian where I could possibly work on writing in between questions, lol.) Who's to say I won't get well and become a fabulously successful businesswoman or author? It all hinges however, on the oh-so overly-cautious Social Security Administration ceasing to take their darn time...Hurry up already so I can get one with my life! :P