Friday, January 29, 2010


Today was the first good day all week. The only day I haven't felt like jumping out of my skin or screaming in angst & frustration. I got sleepy early (the key being a couple of Benadryl I scrounged up from my overnight case, because I ran out of my usual anti-histamines and was having a full-on allergy attack, teary, itchy eyes, addition to the impending sinus congestion, headache, and asthma attack) and I woke up early, for me. 9am. Yay.

I checked my Facebook, caught up on my apps...Apps that the old me would have previously been tempted to judge anyone for having the time to waste playing...
and then I got some more serious stuff done on a project I've been helping someone with.

My cognitive function has been regressing a bit lately. I am still SO grateful for the improvement of the past year, although I don't know what brought it about; if it was Oxymatrine, Inflatrol (a supplement containing Turmeric, a spice found curry being used in tests to fight Alzheimer's plaques, as well as cardiovascular plaques and fight inflammation, and Ginger, another powerful antioxidant, as well as blood thinning enzymes papain and bromelain, Vitamin C, and Quercetin.) or perhaps just gift of not HAVING to push myself like I had previous to moving here, when it was a matter of life and death (or at least keeping a roof over my head, a few drops of gas in my car, and food in my tummy) or just not having to use the brain power to interact with people... Maybe it's a combination. I don't know what it is, but I am SO grateful, especially when I have a bad day, and I can barely fathom how I lived that way for days, weeks, months on end, barely able to keep a thought in my head, walking around in circles, forgetting, getting confused, and feeling like my brain was cramping up, every little thing taking up so much energy... As long as it's only going backwards a little, and it's only a few really bad days every now and then, I'm cool though.

Ah, sad. The kitty just walked in, and I can tell she wants some attention, but I dare not even pat her with my foot lest it encourage her/kick up dander. Picking up my Elavil rx left me with 2 pennies in my wallet, and I ran out of my anti-histamines. Hopefully tomorrow I can get some. Crazy to think that if I am ever stuck in a small room with cats and no anti-histamines it could be the end of me! Especially since I've had the same cat for 14 years and wasn't allergic to her or any other animal for 12 of those years!

Wow, I'm rambling tonight.

I don't know what is wrong with me! Sometimes I wonder if CFS has damaged some kind of learning mechanism in my brain...or if it's just my innate stubbornness that is causing an inability to adjust... Especially this week, it seems...I can't stop wanting to have a life.
Earlier, after talking to a friend who was going out tonight, I found myself thinking, if only I still lived in L.A., I'd go out too, I want to so badly! I need to find a way to make friends here, find places to go. And then reality sets in. Even if I had the money, well, yesterday I got tired walking from the parking lot to the pharmacy and back and had to lie down in the car before I drove home! Today, I sorted my laundry and had to lie down for half an hour before taking it (in a wheeled cart) to the laundry room. And I realize I've tried that before, when I was healthier probably, and it didn't work so well then! I'd get worn out getting ready to go out. Meeting new people is stressful! And then it's really hard for me to keep up with friendships, which makes it really hard to bond with anyone new.

Long story short, lately it's hard to find hope, because it seems like I've tried anything and everything to make my life better, to get what I need to be happy. And everywhere I've turned I hit a roadblock. I feel like one of Pavlov's dogs. I keep salivating thinking I'm gonna get the food, but after years of not getting the food after all, it only lasts a second and then I end up with my tail between my legs because I've been disappointed so many times. Full-time job? Nope, not happening. Legit Part-time job. Nope. School? Uh-uh. Social life? Don't think so.

I swear, I must sound SO negative. And I hate that! I wish I could just be happy lying around not worrying about stuff, most of all, not wanting stuff. But I can't. For long. It's just not me. I want to live. I wanna love. I wanna rock in the city tonight! lol. Sorry, I think that's a song from Live. From the Mental Jewelry Album. (I probably have lyrics wrong, lol. It's the one that says "...he was a rock n roll messiah...")

It's probably hard to tell I had a better day, but I swear I did. I felt calm and okay all day...not till night I started getting a bit frustrated. I'm grateful for the peace though. Night meds are kicking in...Kitty's made herself a little nest in my bed, now I have to figure out how to tell her it's not happening...Imagine if your cat that you'd slept with all your life came up to you and said, "Sorry sweetie, but immune system is all whacked out and I'm allergic to you now"! Well, it could be worse I guess, at least I can keep her around...with a steady supply of higher-than-the-recommended-dosage anti-histamines that is!

Wednesday, January 27, 2010

On NOT Living

Music used to be a passion of mine. More perhaps, the oil that kept me greased and running, that fueled me in a million small ways, barely perceptible from the outside. It got me going in the mornings, inspired me on long drives, was the soundtrack to passion and love and heartbreak, to every important memory...

I hardly listen to it anymore. I have to go out of my way. I tell myself it's because of the cashflow issue getting sick has bred, just now I was listening to something I hadn't heard in awhile, and I realized maybe it's not.

See, music affects me very deeply, always has. I've escaped, drowned, reveled in the lyrics and melodies. I used to work at the college library and I remember walking around shelving books, playing an entire album back in my head in order... I listen, and I don't just think, oh cool sound. It fills my very soul and moves me some way or another. I may think, I want to dance, and find it hard to restrain myself from doing a little boogie. Or I may identify with the lyrics and feel compelled to learn every last word, and become lost in thought. It was like my lifeblood in a way.

So I'm listening now, I hear the lyrics and the rhythm and I get tears in my eyes listening to the stories the singer tells, the life snapshots in his lyrics, in his tone and inflection. And it makes me desperately want to live. It reminds me of all the potential I had, have, trapped in this defective body. It makes me want to LIVE so badly, not just be alive like I am now, but to LIVE like I always did before...taking the bull by the horns, seeing and doing, and to experiencing...being around people and loving and vibing and feeling and just BEING part of the world, a world, something. And I feel so full of angst because I can't. It makes my head want to explode... I try and think of things I could do, but reality is far clearer now than it ever has been before, and it is ugly...but I also have a sneaking suspicion that if the right circumstances presented themselves, maybe I could live again, the way I was meant to...but it's too hard to even hope.
I feel hopelessly tangled and clogged inside, and I can't seem to clear the cobwebs away to find it within myself to overcome it.

Every thing is so hard and I'm so tired of trying so hard and for so long. I don't mean to sound dark...that's not what this is at all. I will keep going, no doubt about that, as long as I can keep the tiny glimmer of hope that I have locked away far, far, deep within, I will try and believe there's a reason to hang in. I have at least a couple of years left in me I think, before my spark is completely extinguished...I've resolved to give it that long simply because I've known that's how long I might have to wait, so it seems childish to give up now...

Sometimes I think I'm silly to hope anything else good could happen that would end that timeline, and bring happiness sooner. Something good. But recently I've hoped...and honestly, I'm getting tired of hoping, and I kind of want to just withdraw back into my cocoon and hide and wait till the storm has passed and the sun begins to show again...But I seem to lose more and more of who I was each day I do...I feel like I'm regressing in so many ways, unlearning, some things that were things I wanted to be and learned to practice, other things unbidden, so much so that I sometimes wonder if my brain really is being slowly damaged...Some people say illness has made the more compassionate people, better people. For me, I sometimes think it has worked the opposite. With attention span and memory sometimes go thoughtfulness, tact, consideration, even politeness, sometimes, all once treasured qualities. Always hardship and never any reward. It's too hard. Not to say I'm not grateful for what I do have, and the small graces bestowed upon me on occasion...But it's just not enough to balance it out. I need something to balance it out. It's not just my body that's ailing, failing me. It's my soul. It wants to live. And love. And begin to learn again...

What a mindf@$# this all is...

Tuesday, January 26, 2010

Trying to Live

Well. I finally started feeling better around Friday; not well enough to drive out and see a show I'd have liked not to miss, much less in the seemingly incessant rain we had here in California last week. Saturday, I was determined to get out though, and encouraged by my first real breakfast in a weeks, I set out to do so.

Getting ready to go however, turned out to be a bit more of a taxing enterprise than I'd hoped. I was exhausted by the time I was ready to leave, my back was aching, heart was racing, was out of breath and sweating...but I had to go. (Interstingly enough, I experienced a symptom that I only usually get when I'm not doing good, usually when I've been making myself work and I'm at my limit, and that I had just had validated for the first time Friday night reading about studies being done in NY about Dysautonomias in CFS patients. I just feel like I forget to breathe, as bizarre as that sounds...I'm not sure if that's truly the case, if I'm breathing too shallowly, or what, but I feel like I'm not getting enough air, but I keep forgetting to breathe! I've gone through times where it's been so bad I practically begged my father to bring me an oxygen tank from work...thankfully it was only a brief episode this time.)
I got to my Mom's house, 40 minutes away, ok, but tired. (Driving is soothing to me, really...if gas were free and my neck hadn't started bothering me when I drive, I'd just drive endlessly, perhaps pointlessly, all weekend...)
I'd planned on going out, if only to see and be seen and perhaps do some karaoke for an hour or so, but I never made it. After I'd been there an hour, I found my stomach rebelling, cramping up and churning the mini pizza I'd eaten before leaving. Nothing awful happened, but I definitely ended up feeling sick and weak, but I was just happy to be out of my four walls and at least be around people (my Mom and my brother) sick or not, so I settled in for a night in. I also came prepared with my secret weapon: packets of ginger and honey crystals to mix with water and drink. Works wonders for stomach upsets of any kind...

Sunday, I was still feeling weak and tired, but better...and as long as I kept the ginger drink coming stomach stayed settled. I didn't get out to do any of the shopping I'd planned on, but I made sure and got out to the movies, I just needed something FUN! The movie was wonderful; one of those cool 3-D ones, and although I had trouble getting comfortable, and was definitely a bit tired after 3 hours, it was worth it, and it flew by. I was too tired to drive home, so I stayed another night. Didn't sleep much, and had to leave early. Was feeling feverish with exhaustion by the time I got home. Still, being out and about so early was somehow exhilirating, and I was tempted to do my laundry...however, once my heart started racing I realized how badly I needed to sleep,and how important it was, so I settled down with my kitty for a nap...
(My allergies were strangely at bay today...I even let her wander up to cuddle in the crook of my arm without any ill effects...)

Now I'm bored. I miss the buzz and activity of a busy household. I want to be part of life, instead of sitting here at home watching fake lives on TV...playing virtual games online, typing at people. I want to make new friends to visit and be visited by, and feel like I'm part of life and not that it's passing me by... least I'm still pretty tired...I could use the sleep. I just dread waking up early tomorrow, and being stuck here with no way to go anywhere even if I up for it and want to...there are things to be done of course...
Of course, right now, if opportunity presents itself, it seems like such a huge effort, I almost want to hide under the covers it just seems like more than I can pull off, I'm tired off all the effort and think maybe I should just give in to sitting here calmly, mindlessly watching the days go by, and not caring, not trying...not wanting... but eventually I always want, always need to try, it's who I am...that part of me I cannot seem to lose, and I can't decide for the life of me if that's something to be grateful for or if it is just making my life that much harder...

Tuesday, January 19, 2010

A Stir-Crazy Brain and a Neurotransmitter Shortage

Stir-crazy in the brain. That's how I feel today. I've spent way too much time in my head. I woke up early, having fallen asleep early, for once (early these days meaning about 1am) and with the urge to speak my mind. This may not sound like a bad thing, but, I'm pretty opinionated, and many of my views are not very conservative. (Religion, politics...all stuff for another blog:))

I suddenly felt like my old self, who wasn't afraid to rock the boat and risk upsetting people. BUT, the facts are, I have CFS and a myriad of other chronic disorders, and these isolate me enough as it is. I need everyone I can keep in the boat. I'm a passionate person by nature, so I HATE to have to admit it, but illness and the ensuing poverty have forced me to become more practical.

So I couldn't figure out, why I was running around speaking my mind left and right and risking catastrophe in my fragile little world.

What's more, I'd been exhausted for hours, and I couldn't tear myself away from the computer. I read blogs and Googled until I couldn't think anymore, because my brain, like many a PWC's brain, is quite easily cramped up and burnt out. And then it hit me: I picked up my Sertraline rx today, BUT, I was out of it for a few days (ooh, fun electric-shock sensations and vertigo!) and it appears that its leaving my system was causing me to lose the touch of calm and lack of impulsivity I'd become accustomed to, and which, had probably made my life a bit easier, if a bit boring and unauthentic.

Well, at least now I knew exactly how it's helping the little bit it's helping. Though I can't say it does quite enough for the calmness. Of course, I've been newly nearly bedridden for a week now...which would normally drive me half insane... (No matter how rotten I feel, unless I'm sleeping, or have taken something to knock me out, my brain is ALWAYS going, going, going.) But I've still lost something.

Part of me says it's lack of discipline. Another part of me feels like my spirit is broken and it's enough to manage just to stick around here, and try to stop wanting more than to merely exist. I'm not a quitter. But I'm so worn out! 8 years I've been fighting a war for my life, and I feel like I've lost far too many battles, and the war is just on the edge of being lost. I make goals. I reach them. I fail. Or sometimes I just fail from the start. I can barely keep straight in my head what a realistic goal even is anymore, I feel so overwhelmed, disillusioned, and worn out. And I am one stubborn girl. Or I was.

Some days are almost normal. Good days. I wake up with desire, and a plan. But most days, I just want to keep my brain amused just enough so that my body can rest and not care about a thing else. For awhile there, I was feeling SO overwhelmed by every little thing I was practically paralyzed into uselessness, a 4-letter word in my vocabulary...

It's so strange to think what neurotransmitters can do. 1 pill a day and I can feel like there's a reason to keep living this non-life. Am I tricking myself? It's hard to say. I don't know what the future may bring. But I guess I can see for myself when I get there. That's something, right?

Hmm. I wonder if I dare eat a cookie? I've progressed to Top Ramen fairly well...Maybe I'll try it, and if not, back to applesauce and crackers I go.

Friday, January 15, 2010


I'm trying, really, really hard to have some. But the anger beneath keeps threatening to lash out, rearing its ugly head.

All I want is to be able to live. A somewhat normal life.
I'd like to be able to go to the gym without wondering if it'll make me sick, so I could fit into more than one pair of pants, all the rest having become too tight since my only feasible hobby is food.

I'd like to be able to clean my room without becoming hot, breaking out in a cold sweat, and feeling the room spin.

And lastly, and I know this is far too much to ask, I'd like to be able to go on a date two weekends in a row.

What is the point in being alive if all I can do is lie here, waiting for things to change, and trying not to get my hopes up?

Ugh, my stomach is in revolt! (For the 4th day in a row, 3rd time in two weeks.) I could deal with that though, if it weren't for how sick I feel when I try and start doing stuff: ill and spinny and queasy and sweaty and weak.

My feet and hands keep getting icy cold too, and my heartrate goes tachy at random.

Well, I guess I'm point in continuing to whine, right? I'll put on a (Hopefully) good movie, put the heating pad on my feet, try and keep my hands not elevated and warm...and be.

I want to see a Reiki practitioner. I may not be overwhelmed with anger now, but it's still there, beneath the surface, and I'm so weary... An influx of healing energy sounds just wonderful. Maybe it'll unstick me so I can make more of the times I am somewhat ok...

Sunday, January 3, 2010

Hope and optimism are back!

And this has been a day-long thing, as opposed to after I take my muscle relaxant & other meds, hehe. I think perhaps it's the Ashwaghanda I started taking again. (My stress tolerance was so ridiculous I was walking around feeling stressed out for no reason at all! Very uncomfortable, makes you wanna jump outta your own skin! And cranky! I hate being cranky!) But suddenly, everything seems possible, and I feel hopeful and can't wait till Monday to start DOING stuff. Just wanted to share, seeing as how so many of my posts last year were kinda downers...

I'm actually toying w/the idea of adding a CFS video blog...It occurred to me that not only would it be good for people to see that a chronically ill person can look just like everyone else, but that it could be good for ME to see me talking about it. I seem to have trouble with acceptance and guilt...incredibly, after all these years, I still seem to be in denial sometimes...and it causes me to feel guilty, and a bit ashamed, that I haven't been able to fix myself...and it's utterly ridiculous but...

So we'll see how that develops...For now...Hopeful & Optimistic are the words! :)

Saturday, January 2, 2010

Epivir, Day 1

As you know, a few months back I was getting a bit desperate. I was pretty much bed or couch-ridden for most of two months; I pretty much lost an entire summer. POTS was flaring up pretty bad, and Orthostatic Intolerance, all made worse by infection after infection, and I could tell my immune system was kaput. No sooner would I finish one round of antibiotics than I'd feel the infection returning, plus the Coxsackie B &/or Echovirus acted up too, so I couldn't even eat, was feverish, in pain, and weak as a kitten. I literally felt like I was dying at times, just wasting away...and it didn't help that apparently I'm sensitive to the antibiotic Bactrim, and didn't figure it out until I had an episode where my throat was closing up, the tachycardia flared up, and I couldn't breath and was having chest pain, not to mention feeling so weak and tired I couldn't re-arrange myself in bed w/o getting wiped out.
It was hell.

My doctor told me he wanted to try me on another anti-viral, after I stabilized a bit.
When I went back a few weeks later, he gave me an rx for Epivir, a drug used mainly to treat HIV, and also Hepatitis B. Yup, we're talking the big guns here.
(The doc chose it because it has been shown effective in treating a strain of Coxsackie B.)

Epivir, also known as Lamivudine, is a nucleoside analog reverse transcriptase inhibitor (also known as an nRTI). Basically, from what I can gather, it stops retro-viruses from duplicating in your cells. (If you watched Dr. Oz's explanation of what retroviruses do when he was explaining XMRV, that'll make sense...Basically he said they duplicate and copy themselves into the DNA of your own cells so the body can't fight them off...almost like a bad guy using a human shield...except I'm not even sure the immune system knows it's doing it because it's hiding so well, at least that's my interpretation...maybe it knows, but won't kill it's own cells?)

Anyways, that sounds good, right? Because the cells are still malfunctioning and sick, so the more the virus does this, the sicker you get. And if it can't do it anymore...I'm guessing the infected cells eventually die off and that gives the body a break and the immune system can respond to the damage the virus, and other infections, better. Again, total layperson's interpretation, so please cut me some slack if the science is a bit off.

Anyways. I got the original rx for it months ago, only it costs about $400, only available in brand name, and my old insurance had a $500 brand name deductible. I managed to find coupons and stuff and get it down to $200 or so, but I still couldn't afford that!

So, I ended up losing my insurance, and was able to sign up for assistance from the drug manufacturer and get it -- FREE! (They won't help you meet your deductible, but they will give it to you for free! Is that whacky or what?)

I was putting off taking it until the New Year, because I was afraid of side-effects, holidays are stressful and hard enough when you're chronically ill, and I wasn't sure how I'd respond.

Last night, I did some research, and found the side effects aren't too bad, not worse than anything I already take, except for something called IRS (lol!) or Immune Response Syndrome. Basically your immune system might suddenly go into gear in overdrive fighting all the infections it finds and cause an inflammatory/immune response which would result in feeling pretty rotten.

I was also debating, because I REALLY want to get back into an exercise regimen, and was planning on starting, like, now. I got nervous though, that taking the new med and starting to exercise again might be too much. And I REALLY need to start on it, even if it's super slow, not just because my genetically endowed gene for very generous hips is kicking in, but because it makes me feel better, not just physically, but mentally, too.

In the end, I said screw it, I took the little diamond shaped pill and I'm going to the gym on Monday, if only to do 5 minutes of cardio and the isometric exercises I started out with in Physical Therapy last year...

Today, I woke up, and I'll admit I did feel pretty groggy and yucky, like I was swollen all over, pretty miserable. I haven't felt QUITE that bad lately, but it happens occasionally, and it was a sunny day so my room got hotter than it's been in awhile, which always makes me wake up feeling like that, so...chances are it was just that.

The only thing I did notice, is it made me sleepy, and I think it is again now, so I'm off, at least to lie down...

Wish me luck, I hope to update regularly!

More XMRV Info and Research Survey

I found a good discussion about XMRV and what it all means here:

There's a link in it to this Research Questionnaire The Whitmore Petersen Institute is doing on there, but in case you don't want to read through it all to get there here's the direct link:

Whitmore Petersen Institute Our Research Questionnaire.
At the end they ask if you'd be willing to give a blood sample, so I think this is SUPER important. I think we've all wished the power to find a successful treatment or cure was in our hands, so maybe this is an opportunity to help!