Saturday, April 30, 2011

Back to Basics: Pain

Cool sites I found about pain & what to do. I think sometimes, when we have Fibro, and the magic pills have failed us or are unavailable, I think we forget that there are other things to try that help, as outlined here:

Another one on my other weak spot, arms/wrists:

Good stuff, especially the exercises, some of which are stuff that they had me do at Physical Therapy, so I KNOW they help.

Friday, April 29, 2011

Vote Now to Get a Chunk of the $5M Chase Community Giving for WPI & CFIDS Assoc.

Please do this, if we get up there, the money will go to help us! (PWCs)

Vote Now to Get a Chunk of the $5M Chase Community Giving for WPI & CFIDS Assoc.

Potential For New Target Structure For Antidepressants

Thought this was interesting!

Potential For New Target Structure For Antidepressants

Friday, April 22, 2011

Just another day...

Well. Isn't it funny, how when you WANT to sleep in, and CAN, you end up waking up early? I was stubborn, went back to sleep after a couple of hours, because I actually did feel really sleepy. And then when I woke up again, it was awful. I felt like I couldn't move, and it took me awhile to realize that it wasn't that I couldn't move, it was that it hurt to move.

My morning stiffness had gotten better for quite awhile, but lately it's back and with a vengeance. If I'm lucky it's limited to my fingers feeling like someone turned them into overstuffed sausages, but I've occasionally again been greeted by the feeling when I get up that my feet have been smashed to bits and may not hold me long enough to get to...wherever it is I'm headed! But today, it was every bit of me, from the fingers, to the point where my hips and spine meet, my knees, elbows, all felt like I was about 120 years old. I'm talking excruciating pain to move, like a rusted tin woman, which is why before I was fully conscious, since my mind couldn't register more than move=not a good idea, I thought I just couldn't move, but it was really some primitive instinct telling me I probably didn't want to, lol.

Fortunatley, once aware of this, I could move more slowly and carefully, and once the getting up was accomplished, I was okay, except for the sausage fingers, which lasted quite awhile longer. (Again, I think this was the case, I feel like I'm forgetting something else that hurt. See, this is why it's so hard to tell doctors just how bad I feel. In order to stay sane I happily forget any pain that isn't either excruciating, very consistent, or chronic for years.)

I don't know exactly what it is that's causing this to come back. That I quite taking my Inflatrol supplement (Ginger, Turmeric, Quercetin, Enzymes) because I ran out, or not taking Fish Oil anymore for a few months, or stopping the Immune Support supplement that was obviously helping my immune system function better. But anyhow. I still consider it a pretty darn good day. Not a ton of fatigue, after the sleepiness and proceeding nap. Not a ton of pain (though my wrists are nagging a bit at me while I type, that's almost not worthy of mention) feeling ok... Today the problem is mostly spiritual and mental.

Spiritual, because I spent most of the day feeling stifled, stuck inside, something I've been struggling with that I can't decide if to name depression, anxiety, uncenteredness, or just overwhelming isolation and stir-craziness. (Because certainly, being occupied and interacting with people makes it go away.)

Unfortunately, that part is mostly out of my control, and the mental, or rather cognitive part seems to be making getting occupied a problem, I think...I can't decide if my restless spirit won't let me focus, or if I'm restless because I can't focus. So frustrating, wanting to get something productive done, but being thwarted by either one. I'm leaning further towards my brain being the issue, because I've been having SUCH a hard time concentrating. Some work that should have taken me 3 hours or so took me more than double, that's how bad it was. Lots of walking around forgetting what I was doing, starting something new, forgetting that, remember two things ago, forget current, aahhh, just maddening. But the topper, was definitely when I went to meet a friend, knew that I'd opened the ravioli I was planning on having for dinner, but forgot about the water on the stove that I left ON, then proceeded to decide to have dinner out instead. I came home to the sound of a smoke alarm, then realized it was at MY home, not the neighbors, walked into a smokey, beeping condo which I almost burned down via Teflon pot. How's that for a good one? Oh well, I'd wanted to throw that thing out anyhow. Teflon is evil. If you don't believe the cancer reports about it, well here you have it, proof that it IS in fact evil: it tried to burn down my condo. ;)

Saturday, April 16, 2011

New Study Confirms Cognitive Dysfunction in CFS

Cognitive deficits in patients with chronic fatigue syndrome compared to those with major depressive disorder and healthy controls

TO summarize:

Patients with CFS had slower phasic alertness, and also had impaired working, visual and verbal episodic memory compared to controls. They were, however, no more sensitive than the other groups to suggestibility or to fatigue induced during the cognitive session. Cognitive impairments in MDD patients were strongly associated with depression and subjective fatigue; in patients with CFS, there was a weaker correlation between cognition and depression (and no correlation with fatigue).

This study confirms the presence of an objective impairment in attention and memory in patients with CFS but with good mobilization of effort and without exaggerated suggestibility.

Wednesday, April 13, 2011

Myers Cocktail

Another thing I want to try when finances allow.

My fears of waking up back in that place were unfounded, thank goodness. I think it was hormones. (Hate those darn things!) Or maybe it was the sage! lol.

Hair Loss in CFS/FM

Great article by Doctor Teitelbaum (one of my fav CFS docs).

Wish I could have read it a year ago! So grateful my hair's not falling out anymore, and has even seemed to grow back in. While it wasn't coming out in chunks, like from chemo, I could run my fingers through my hair and enough strands would come off that it would be alarming. The carpet was lined with a film of my hair (getting help vacuuming usually takes months around here) as was the bathroom tile, even though I would clean it up often, and it even ended up in the fridge and on the stove & counters, eww. (Those I cleaned right when I noticed, but it kept happening.) It was a little alarming, and icky, too.

Thankfully, it's all better, but just in case any of you are suffering the same symptom, now you know you're not alone and there are some things to consider/try :)


How ironic, just as I typed up that title, I remembered I had a dream last night about riding rollercoasters! (Something I don't think I will probably do again, as much as I'd love to, because I used to already feel so sore before I got sick, and between FM and my neck problems, I doubt my doctors would approve.) Man, it was a creative some kind of reality contest show, and we took a trip to Disneyland, or Knotts Berry Farm or something and all kinds of craziness ensued. My dreams are pretty amazing, the brain is an mysteriously fabulous thing, cuz I can't count the number of times I've woken up thinking, "Wow, that would make an AWESOME movie!"

But I digress.

And now I regress to my point. The rollercoaster day.

Well it started at the bottom. I didn't want to get out of bed. I woke up and my soul felt like something was trying to smother it. It's a feeling like you're suffocating inside. It's hard to explain, but suffice it to say, it is a very, very awful feeling. And it seems to do away with your willpower. I felt okay, but I just had no desire to get anything done, and I ALWAYS have something I want to get done...
If I hadn't woken up with my stomach physically starving, I don't think I would have eaten, I didn't feel like it, I only did to stop the stomach pain.
And like I said, everything is a mess and I feel so overwhelmed. Unlike previously, I know there's nothing to do. It's kind of scary, because it's so desperately awful a feeling, that I want to scream. Maybe like a long-term panic attack maybe? Weeks before my hearing, and I feel like I want to check out, like it's not worth it to battle this same stifling force day in and day out for something that isn't a sure thing. It occurs to me that it would be quite ironic if I left right before my life became worth living, and it makes me laugh, because I feel so cynical and bitter inside. And apathetic. A really awful apathy, so hard to attack & break through. I try and tempt myself with thoughts of productive tasks, but nothing appeals to me. And it's weird, because while I'm trying to think how to make it better, which means finding out what is causing it, well, I think I already know all the causes, and they're all out of my control for now. Also, I know there's no point in reaching out. I've been here before. My mother would end up getting upset with ME for stressing her out, making it all about her, and just all around make things a million times worse. My brother, can never be bothered (I've begged him at times to come spend some time with me when I've been bed-ridden or really down, unsuccessfully) and/or will tell my Mom (of course, leading to a freak out & her calling & yelling at me) and my Dad is too wrapped up in his love-life and avoiding reality, he could barely be bothered to sit with me when I was homebound and bedridden, and he's been pretty much seeing right through me for the last couple of years. (With the exception of when he wanted to use my car to take his "friends" out, and didn't want to take no for an answer.) Friends, don't understand that their bubbly formerly party-loving friend really IS sick, and/or are too busy with their own lives to make the trip. I dare not ask or expect anything from any of them because I already know better, having it thrown in my face would only devestate me more. It's so strange, I've never understood. It's like that song from Grey's Anatomy: "I'd have stayed up with you all night, had I known, how to save a life..." But I really think that's something people only say that when it's too late. To make things worse, I'm not one of those people. I've saved a life. I've kept a friend company for 72 hours straight to make sure she'd be okay before. I don't understand how people can not understand how little it takes. When someone is down, they don't even usually need THAT much attention. Just hang out with them for awhile, make them laugh. Give them a hug. Bring them a wildflower, or Starbucks, lol. (Ok, well not Starbucks for me, can't have caffeine.) Or have dinner with them. Anyhow, I know better than to sit and get more upset because no one cares, cuz it doesn't stop the pain, it just makes it worse.

Finally I remembered a phone call I should make, do that, and got busy sending some faxes, and playing with my MRI scans on the computer. (I made a movie slideshow, and exported them as graphic files, too, woo! But I was still feeling choked and stifled, just going through the motions.

I've been dying to go to the gym for days now...My butt is huger than it's ever been, EVER! I have to admit I'm getting truly overweight. I'm pretty sure I have an eating disorder, cuz I've done nothing but eat for days before today. I can't fit into my pants, but can't stop eating. Well, it did help that I realized that Vitamin B-12 makes me ravenous. I thought the hunger felt weird, like some kind of psuedo-hunger, yet not at all like I wanted to eat as a distraction or to cheer myself up.
But, yes, back to the gym. I wanted to go, but I felt like I couldn't make myself.

So desperately, I started looking on YouTube for any Chakra Clearing or Reiki Meditations in hopes of some healing. I burned some sage, to cleanse the space and my chakras...and then I did the Beat Fatigue Yoga DVD, and finally felt reasonably balanced and lighter, clearer. I tooked a nice hot shower, did some dishes (Been putting if off because of my wrist, but hey, my wrist isn't getting any better anyway.) I put away some laundry, too. Wonderful. Feel so much better now. It's a good thing my meds have me falling asleep though, cuz I fear waking up tomorrow to the same thing and might not have gone to sleep for hours...Well wish me luck.

Sunday, April 10, 2011

Doable Exercise: Beat Fatigue with Yoga DVD

Found this DVD and decided to try it out. Found it was pretty good. Not all of it is quite as easy as Healing Yoga for Aches and Pains, but you have more routines to choose from, and there are even some you can do in bed, so it works out. I'm going to give it a long term try... And of course, if you want to buy it or check it out, click on the link below and go to my store. :)

Beat Fatigue with Yoga' really is a unique DVD release. There are several DVDs available on yoga but most of them involve supermodels and perfect bodies. This DVD is for the ordinary person who gets tired; and that includes almost anyone. The programmes on this DVD are designed for people in different conditions. The DVD features Sue Delf, one of the UK's most experienced yoga teachers who teaches at the famous TRIYOGA centre in London and Fiona Agombar, author of the well known book also titled ""Beat Fatigue with Yoga."" Both have gentle and encouraging style, perfect for those just starting doing yoga, and those who already have a practice.

Saturday, April 9, 2011

Now for the Science

Have a couple of interesting articles I wanted to share.

One is basically, as far as I can tell with my current attention/concentration span, about viruses, and how they can get into your brain and affect different parts of your neurological system, and how once they get in you, you're pretty much stuck with them, and if you're lucky your body can keep them at bay, if not... (I didn't say it was good news!) I think it might also explain my developing what seems much like ADD (when I was trying to clean the other day, I realized that part of the reason I seemed to be getting nowhere is that I couldn't focus! I'd go in one room, pick something up, on my way to the trash, see something else, start doing that, get distracted...ugh! Plus the memory problems...what was I doing again?)

Oh yeah, so here THAT is:

Encephalomyelitis Is an Unusual Complication of Infection with Encephalitic Viruses

That posted, it occurs to me to ask...anyone else taking reverse transcriptase inhibiting anti-virals who wears contacts notice any yucky stuff coming off with them? It's like protein build-up, when you take them out you can see clear little squigglies like oil residue floating in the case...I'm guessing possibly some waste product from the cells that can't duplicate the viral RNA because of it? Funny thing is, I had it when I was on that Guaifenesin Protocol as well...I think that's when I got the idea it might be protein, but this stuff is way worse, doesn't just make them gooky, it makes them stiff & unwearable way faster than usual. That or phosphates. I'm sure that all sounds totally whacky to anyone who hasn't experienced it, but it's been bugging me, and I keep forgetting to write it down to ask the doctor.

The other article is titled: Increased plasma peroxides as a marker of oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Basically what I can glean from that is that a symptom specific to CFS is that we are oxidizing faster than the average person, which as you can guess if you're a user of anti-aging skin creams, is probably not a good thing. Does it mean we're aging faster? (The reason for all my grey hair?) Not sure. But I'm pretty sure it does mean our bodies in general are going downhill faster. Cells, organs, tissues...all getting worn out and dying and having to be replaced faster...yup, that sounds kinda bad. (Although I think I may be missing a key point unless I point out that perhaps they are thinking this could lead to a diagnostic test of some kind? I would think lots of diseases lead to oxidative stress though, no?) I could be wrong, I'm not a doctor of any kind, after all, but I think I'm gonna have myself an extra serving of Goji berries, just in case... (My brother got on an unexpected health kick after watching a documentary about how crappy our food is these days, and got me into them. He says that besides giving him an energy boost and being amongst the best anti-oxidants known to man, they keep him regular. Ah, the things that begin to matter when you are quickly approaching thirty! Hang in there little brother it's gonna be's surprising the things your body throws at you to let you know you are definitely not a kid anymore, but'll be ok.)

So eat your Goji Berries boys and girls! Even if you don't need to be regular, the anti-oxidants can't hurt. And I think they do give you a little kick. :)

SSDI Pre-trial Meeting with my Attorney

Well, it went better than I expected! Yup, I had to get up early, but fortunately it seems like the B-12 I've taken the last couple of days has eased up the POTS, so no dizzy spells or excessive stumbling around grabbing doorframes or walls waiting for my vision to clear and the vice-grip on my head to let up. Of course, I still lost track of time; in order not to stress myself and end up sweating and exhausted by the time I'm ready, I try and take things one at a time, and I inevitably lose track of time, but it worked out ok.

I was exhausted and frizzeldy brained & frazzled by the time I got there, had to wait a bit in the waiting room, put my head back against the wall and closed my eyes to try and calm my spazzy brain/body, and was embarassed when the receptionist called out my name, looked concerned and let me know the Attorney would be right with me. I put my headset on and started my meditation playlist on my phone for a few and that helped de-frazzle me.

My new attorney (old one left the firm) was very nice, and was as I'd hoped, gave of more of an air of maturity. (The last one seemed positively GREEN!) But with the new one, her maturity, professionalism, and thoroughness left me with a very good feeling. She asked me an entire list of questions as if she were the judge, and took very good notes. She was familiar with my judge and even stated she liked him, and she asked some good questions. It was a good experience.

When we were done, after a good hour, I was exhausted, but was perked up a bit once I walked outside. Something about actually having my feet on the ground in the City of Angels (or any city, really!) excites me, inspires me, makes me feel like the possibilities are endless. The same building houses Billboard Magazine, and given the writer in me, and my fascination and past experience with the music business, I had to sneak up onto the publisher's floor, sneak a peak and restrain myself from asking about employment opportunities, lol. One day, I hope to be published in one of their mags! One day, I say!

Still, I was tired, so I let the GPS take me home, nevermind that it was again insisting on taking me to the Golden State Freeay, which I'd avoided on the way there due to it's reputation of random accidents and traffic jams.

Made it home ok, albeit with a numb rear end, only to encounter the mess this place is again...and decide I didn't care, I wanted to lie DOWN!

I really hate it, this mess. But I'm absolutely too overwhelmed to do anything about it. I realized yesterday that it is probably depression rearing one of it's heads...the idea of cleaning makes me want to hide under the covers. And I think I figured out why. Cleaning=pain. What was puzzling me was, why was I able to help at my Mom's so much more? And I came to this conclusion: Pain is much more easily dealt with when you are distracted and have something to look forward to, which I was and did at my Mom's.

I have absolutely nothing to look forward to here. No one will see the results of my labor . There's no one to enjoy it with. Nowhere to go after (put every last cent I had in the gas tank to get to L.A. & back, and I don't know what there is to look forward to? Winning my case is about the only thing...and I'm not even sure what that outcome may be.

But yay, that's all over with and the hearing will be here before I know it!

Falling asleep now, so gotta go. Will post some articles on hair loss & FM/CFS tmo.

One Month to go...

I can't remember if I posted this before, but I did get my new hearing date, finally. It's in about a month. I can't believe it's really happening. Time is going by so fast, and while I talk about it and the positive outcome I expect often, deep down I'm not sure I believe it is really happening, or maybe it just scares me too much to believe something I've waited so long for is actually happening.

But thank goodness it is, because really, it's the only thing keeping me going. I have to get away, soon, I'm only half exaggerating when I say my sanity is at stake. I desperately need to detach myself from the dysfunction I live amongst.

I was doing well for a good couple of months, I was actually at the point where I was actually feeling happy for the first time in years. Spending a couple of months at my cousin's while she was gone made the holidays a breeze, although someone in my family managed to ruin my birthday, and we didn't really, really celebrate Christmas, but I was too tired to care anyhow.

Then I spent 2-3 months with another family member, and kept seeing a lot of my family, which was great...they even managed to let me feel useful. (Nothing better when you've felt so useless for so long!) It didn't even matter that I was broke, the surroundings of the place was so beautiful and awe-inspiring, just being there was great. Plus, it was nice not to be ignored, to actually have contact with someone all day and have someone to run errands with, and a little furry one to play with, or just laugh at when I had to lie down, and of course the joys of having a DVR at one's disposal...(hehehe)

Yes, it was quite a difference from being at home, alone, pretty much all the time,kept disregarded and separate, just trying to keep from thinking too much, eating too much, and with nothing and no one to distract me from my myriad of symptoms. It was amazing really, what a difference it made. I had to push myself to be around someone 24/7, but sometimes that was a good thing, and I think I became stronger, and it's amazing how much it helps you forget your ailments when you're busy!

Alas, as is typical in my family, the honeymoon never lasts. No matter how much much of myself I give, how hard I try, how well things are going, there's always an irrational blow-up at the end, especially if I'm upset about anything and vulnerable, precisely when I need support is when it all falls apart. ALWAYS.

So I had to go home, permanently. I was having a big increase in pain, and I worked through it, the house had to be clean because we were having company, family from out of the country, so I made myself do it with the help of some pain medicine and a lot of willpower. (Okay, so not all of it, by any means...I got to call in some help...which I'd been begging for for years...and of course cheering me up by having a clean place to stare at isn't as important as impressing ones family...we even got the window coverings I'd quit begging for about 2 years back!) And then I was nervous, because I absolutely HATE being around people I don't know super well when I'm not feeling well...and with me it's always up and down. 1-2 good days, 1 bad, 1 good, 3 bad one day may start out good, and I might be tired after a couple hours, or vice never know. So anyhow, I had to stick it out, but it all turned out well. I got to see some of my relatives from the other side that were very dear to me, and for once I had someone to share the beauty that exists down here as well.
In the end, I also realized I'd been taking on some emotions that weren't mine, that someone has been feeding my anger and frustration over certain things unrelated to my illness, but nonetheless stressful or poisonous, and that it's probably best the way things have turned out.

So here I am, just trying to lay low, telling myself...Just another couple months...just a couple more months girl, weeks, really, and you can quit just being a virtual girl and return to living...I will go somewhere peaceful where I can replenish my soul, heal the cracks in my heart, and hopefully begin to repair my malfunctioning body. I will begin again, and I will re-emerge with the strength to keep away all those who would hurt me and have the courage to trust that there are those who might not. I'm hanging on for that. And I know there are those who would say I have the power to do all that now...but I don't feel like I do. There are only so many times you can pull a rabbit out of thin air, and I've beyond exhausted those. Finding ways to get things done despite it all can wear you down to nothing when there's no joy or any reward to replenish you. So I have to believe I will have my chance, that things will go my way.