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 , 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

Monday, May 24, 2010

Alternative Energy - Treatments that Is.

Been so tired lately. My lady cycle has begun again, and I've been struggling badly for energy since a day or two before. I got to bed hours earlier than normal last night, and relatively early the night before, but I still woke up exhausted. I'm struggling right now, but I figured I might as well post as I try and wind down from the LOST finale :)

Anyhow, my first Reiki Treatment (well 2nd really, first in a couple of years, and with this practitioner)appointment was Friday evening, and it couldn't have come at a better time. (I might have mentioned it, but I found a Reiki Practitioner close by who works by donation, and got an appointment almost right away.) I was still tired afterwards, but it felt different. Before I felt exhausted, like gravity was pulling me down...after, I just felt really tired...but when I went to brace myself to hold myself up and will myself to move, I found a lightness and ease that made me have to stop and re-evaluate whether I was tired after all. I was, but it was definitely a different, much better form of tired. It made me wonder if this is how normal people feel when they're tired...

Anyhow, the treatment was amazing. I mean, nothing crazy, but my closed eyelids felt like a movie screen the lights I started seeing after she got started were so bright and vivid that I had to stop myself from opening my eyes because they felt like they were open, and I had a strong suspicion, that if I were to open them they would still be there. I saw the same as last time...Blue, Indigo, Purple, Fuschia...and then a very muted off white khaki tone swirling with a soft shade of pink, very odd.

I felt the energy too...Odd because, like last time, I'd swear I'd hear movement at one end of my body and yet feel the energy at another part.

Also, like last time, I felt a strange sensation in my hands, as if they were being held open and weighed down by something very, very heavy. Last time it felt like an energy ball or something. This time I could feel a tingling but most of all I felt the heaviness in my hands as if they were being pinned to the table. I don't think I could have moved them if I'd wanted to.

I opted to tell the practitioner nothing at the beginning, so it made it extra interesting to hear her observations at the end of the session. She said I had blockages in my Throat Chakra (which I expected) but also my Heart Chakra, and Pelvic Chakra. (Interesting in itself because my Endometriosis and Interstitial Cystitis were making themselves known that day. Her words were "something down here, like with your ovaries.") I looked up the Chakras she mentioned, and lo and behold, they correspond with the colors I saw! The colors for the Heart Chakra, the decription of which matches my issues perfectly, is actually Green and Pink!!!!
The Throat Chakra was the other Purple colors I saw.
I also got curious about the heavy hands thing, asked her, and she said that most people who say that end up becoming Reiki Practitioners themselves, so it seems to mean that one has a talent for it, which I had begun to suspect by the end of the session.

So, no crazy burst of energy, like last time, but definitely last exhausted. Prolonged one on one encounters with people I don't know well usually leave me a bit overstimulated, full of very nervous energy afterwards, but I only felt a little of that and overcame it very quickly. The most defined effect seems to be on my mood, outlook, and spirits. I feel calmer. I got some unpleasant news today which normally would have upset me to the core and revived all kinds of anger, hurt, and nasty feelings. It was (wonderfully) strange though. Intellectually, I was angry and upset by it. But I felt like I had some kind of emotional force-field around me keeping it out and away the vulnerable parts of myself. I vented, and then I let it go.
So anyhow, weekends like this, where I am SO excruciatingly fatigued, are usually really tough for me emotionally. (Thursday I almost drove myself to tears, I'd been doing so good at keeping up with tidying up, but I just couldn't do it at that point, with so little energy...not even cook, for myself...So getting through an entire weekend like that without getting bummed out is really something...)

SO anyhow, I hope this all makes sense, just wanted to share/document my experience w/the Reiki healing...I'd also like to post some research I found on Highly Sensitive Central Nervous Systems, but I think that'll have to wait till next time...until then... :)

Tuesday, May 18, 2010

The Question Rises. Again

And the question is: Do I try and go back to work.
The same old question.

Right now, I'm not working, because I don't feel well enough. I'm tired of failing. I'm tired of making myself sicker everytime I try and hold down a regular job, or in the case of the last few months I lived on my own, trying to survive and keep a roof over my head.

Oh, I've made a couple of attempts to start a home-based business. But I get so overwhelmed with the ups and downs (I believe my adrenals are extremely fatigued, and my Central Nervous System gets over-aroused far too easily, been doing some research on that, which I will share soon)I end up giving up.

I've been trying to be patient and hang my hopes on the idea that my Social Security Disability could come through any time, and then I'll have all the money I need to seriously pursue holistic treatments that have helped in the past, try some new ones, and (here's the key) actually have the means to see them through to the end. ("The End" being my being cured, or at the very last well enough to work enough to make the money to maintain that level of wellness.)

But lately, I see myself declining in a whole new manner. It's not so much depression, as it seems to be a spiritual poisoning of sorts. I've come so far in other ways. I've progressed by leaps and bounds as far as acceptance goes. I've let go of the misplaced shame and judgment I'd felt at not being able to overcome my health problems and lead a normal life. I've felt much more like me than I had in years. But I'm so angry inside so much of the time, and the dynamics of the environment I'm living in is so warped, I feel as if it's a sort of darkness that is invading my soul, eating it up, and could ultimately destroy and warp the essence of all that is good in me if I don't take action to stop it.

My intuition tells me I need some energy healing. Experience tells me I need some adrenal supplements, which seemed to be helping a couple of weeks ago. I'm so anxious lately, like a generalized sort of anxiety, I've botched my diet...I probably bought $80 worth of junk food with my grocery money and ate it all in a week. It made me feel better. (Can you say headed for an eating disorder?)My stomach's a mess, IC is acting up, and I've gained back some weight.

I need money so much. I'm thinking of just doing it. What's the difference anyhow? I don't work and die a slow, spiritual death, or I start getting some gigs, which maybe I won't do well, but they will get me some cash while it lasts, get me out and around people, which will lift my spirits, and help me afford treatments that might save me or at last make me a little better.

It seems worth the risk right around now. Failure is not much of a fear, I've become accustomed to it...So we shall see...

Thursday, May 13, 2010


May have posted this before, but I really love this site. Bless those researchers fro what they're doing!

(If you read through this site, you'll also see where Xyrem ties in...)

FM Awareness Day; New Drug Research Reviews

Sorry everyone, I know FM/CFS Awareness Day is technically over...
But thought I'd post anyhow.

I did a lot of FM/CFS-related posts on my personal Facebook page, but wore myself out before I could make it here. Today I got an e-mail on FM news stories that mentioned two drugs; one I'd heard little about, and another I'd never even heard of, Sodium Oxybate (aka Xyrem aka GHB) and Flupirtine.

I found this article on Flupirtine, and was astonished to read how GREAT it sounded as a treatment for FM. A non-narcotic, non-NSAID analgesic that also helped with energy! I got really excited. Then I looked at the date on the article. and saw it was dated in the year 2000, much to my disappointment. Apparently this drug has been available for a couple of decades in Europe. So what I want to know now, is why is this the first I'm hearing of it? I still have to do some follow-up research to see if I can find the answer, but I'm guessing it will be FDA/Big Pharma red tape -related.

The second drug, which vaguely rang a bell, after a quick Google search to refresh my memory, is being prepared for marketing under the brand name Xyrem. I also found out that it is basically GHB...Better known as "The Date Rape Drug".

I thought, WOW. Are they serious with this? Do they know about Fibro fog? It just seemed like a bad move, a VERY bad move, to prescribe a drug that makes date rape victims forget what happened, as well as being effective in making making people forget traumatic experiences. My first thought was, not a chance I'd try that! I then did a search on memory and GHB, and found this article, which explained the effects of it on people with FM/CFS.
Sounds AMAZING. The main mechanism by which it works seems to be by quieting the overactive nervous system of people w/FM/CFS. It also seems to help with anxiety, as the article mentions. (I'm a total anxiety ball, and I've often wondered if day after day and year after year of pushing past all that anxiety (I rarely let it stop me) had something to do with my body beginning to betray me, that the stress helped run me down and make/keep me sick.
Here's a link about Xyrem & FM; note the main point:

"Some people already take Xyrem, off label, for fibromyalgia and anecdotal evidence supports its use. Clinical trials have shown that the drug can significantly improve sleep quality and reduce pain in people with this condition. The first 2 Phase III trials have been wrapped up but the findings are not yet released. Jazz Pharmaceuticals submitted a New Drug Application to the FDA in late 2009."

Hence, probably not the right drug for me, I already sleep decently (aside from staying too late.) And my pain is currently manageable. To learn more about Xyrem, check otu this article:

That's all folks...falling asleep here,now, yay!!!!!!
Oh, did wanna mention that I made it to the gym today! So it's ON! Well...guess I should wait & see how tomorrow feels....but I'm optimistic and can't wait to work of some more of the pounds I've accumulated!

Hope you all had a great Awareness Day & did your part! And if you live in Southern California, try & make it to the NFA's even on Saturday!

Monday, May 10, 2010

A couple of great days...

Thursday (I think) Friday and Saturday were GREAT days. I guess I can't quite say I felt normal, but close enough to it that I'd take it any time if it's the best I could get to it. I ran errands. Lots and lots of errands. Mostly involving groceries.

I started my cat on raw foods, because I'm afraid she might be sick, she's been overweight for ages, no matter what diet food I've tried, and she's getting up there in years. First thing I saw when I Googled holistic treatments for cats was feeding a raw diet, and I'd wanted to do that years ago anyways, only I only had a mini-fridge at the time w/not much of a freezer to keep the food in. She took to it really well, and as morbid as it seems, especially with my being a strict lacto-ovo vegetarian of 10+ years. But it just seems right. It's only been about 50 years or so since the barns they used to hunt mice in disappeared and fewer since they became relegated to yards, and now, indoors only, like my baby. I still remember the days when gifts of birds, mice, and lizards were left on our doormats as offerings from our little hunters...

So along with the obvious changes I've seen from changing my own diet to include more raw and unprocessed foods, it really seemed like the right thing to do for her.

As for me, I went a little buck-wild on the sweets this weekend. Week, actually! Oddly, that's when my energy went up. BUT, it also caused the worst flare up of my IC symptoms I've had since January or so. I really believe there's a tie-in between IC and Candida. Before I had it, when my mother was suffering from it, I found and had her doctor put her on a treatment that included Diflucan (an anti-fungal) for a few weeks, and tons of probiotics, and she's been far better off since. She also notices sugar seems to set it off. And while I was sticking stictly to the Body Ecology Diet, my IC symptoms were pretty much managed except for some premenstrual flare ups.

Well I started back on it, and I'm back to itching like crazy, like I did at the beginning (I'm assuming for die off of the candida fed by my sugar binges) and my energy has plummetted so much that I was just now having to remind myself to breathe because it seemed like so much effort...But I'm going to get back to business. I'd lost over ten pounds...and if I can stick with it eventually the detox will taper down and I hope to feel like I did the past few days for far longer!
Saturday I went to 3 different stores AND the beach! Maybe I'll post pictures later! :)

Monday, May 3, 2010

One of those Days...

Where I feel like I'm treading water. I keep getting my head well above, and I keep getting dunked by a well-timed wave. UGH.

I'm bored silly. So restless I could cry. At the same time, I have hardly any energy. But I don't really have the will to live in the Virtual World anymore. I'm out of things to do there!

It's just been such a challenge today. I woke up early. Just completely awake, and tired. And angry. Feeling spiritually damaged. I'm so tired of the people closest to me letting me down. But I don't have much choice but to keep them populating my life. Still, I have the foreboding feeling that if I can't get away from all the hurt and end the cycle of forgive and get hurt again, I will soon become so bitter, angry; damaged, that I will cease to be who I am, I will lose the good, joyful, happy, BEST part of me, forever.

I managed to get back to sleep, and felt a bit better. Not so damaged when I woke up. But lots of things yet to go wrong. Mainly, not getting some money I was counting on, the idea of which had kept me going for days. There was medicine, supplements, and toiletries to get. Some foodstuff. But my doctor is being uncooperative. I hope he's not bent out of shape because I requested my records, thinking maybe I'm going to another doctor? I just wanted my new GP to have them, and a copy for me. Anyhow promises from his staff were left unfulfilled. And this, in turn, most likely means that I will lose certain benefits I was receiving and have to start the process of applying for them over again, meaning I will have no money until, perhaps, the end of the month, if I'm lucky.

I also got the joy of dealing with an annoying pharmacy tech who questioned if I was getting one of my meds at any other pharmacies, even after I said "no". (This is a pharmacy I go to regularly, everyone who works with the public there knows me... and could probably tell you that my habits indicate I'm not one to abuse my medications.) Yes, she was doing her job, but I'm so sick of being suspect of something I would/could never do: abuse the medications I use to manage my conditions. Makes me really miss my old, private doctors. They had my history right at their fingertips and could check my medication history and see that I've been using the same medications, in the same, small amounts, for years now, which wouldn't be possible if I were abusing any of the habituating ones.

Ah. Rant.

Well. I have to go see if I can gather up the energy to go to the store and spend all my remaining cash on kitty kibble. I do love that cat, allergic to her or not. I just wish we could cuddle more! Which I guess, if I stuck to this darn diet, I could. But I keep getting blue, and then I go after the nearest chocolate or ice cream I can find...