rootofnewt: (jude)
I fell into a conversation with some local shopowners, as I often do in our small town. They run one of the local birding shops. I was stocking up on suet cakes and buying a couple small feeder items. Another customer asked what birds I see and I laughed and said that I'm not seeing too many, as birds get up much earlier than I do.

The shopkeeper then introduced me to the other customer. I recognized the name of a prominent pyschiatrist/writer, but we did the whole cordial greeting thing. She began chatting to the shopkeeper and I wandered back to look at more items. The other shopkeeper came up to greet me--I always enjoy chatting with them. Then I noticed that the other customer was carrying two books on the Chechen conflict. I told her that I enjoyed both books and that I hoped she found them interesting.

She was shocked that I'd read them. I'm not sure why. She asked why I'd read such depressing fare and we discussed areas of interest and education--she's giving lectures on the Beslan situation, I just keep up with the region out of interest. She then asked what I'm doing with the degree and I cheerfully informed her that I sleep. I'm very casual when perfect strangers ask what I do--these days, people always ask where you studied, why you moved to X, where you work. I typically answer such questions with noncomittal and jovial answers: I studied in DC, I like the food, I'm a poodle wrangler.

Anyhow, she started going off about how I needed a job so I didn't have to sleep all the time. Needless to say, I just smiled and said, "I have chronic fatigue syndrome". This news stopped her in her tracks. She looked shellshocked. She asked how one gets over it. "You don't. You learn to cope."

This is where she went off on a pity streak a mile wide--it continued as we left the store and went to our respective cars, despite my telling her that I'm happy and fine.

I do not need pity.

Yes, my life has changed. Former hopes, dreams, aspirations--all gone. You know what, though, if I can cope with that, so can a perfect stranger. Sure, there's no Peace Corps, no Foreign Service, no grad school. Heck, half the time, there's no dinner service. That's okay.

I have a good wonderful life. My beloved partner in life adores me--or at least puts up with me and even seems to be fond of me. I have a poodle who contorts himself into wacky positions when he sleeps on the couch. I can go for hikes in the mountains and take pictures of wildflowers I'd have never seen if I'd not fallen ill.

I have friends. I have tomatoes which grow in my garden. I have the remarkable ability to throw together a casserole on a minute's notice.

Yes, I'm in physical pain every single moment. Yes, I have overwhelming fatigue. It's true, I can't have a fulfilling career, but a career is not required to live a full life. Nor is good health. Heck, I don't even need a dayplanner and I survive just fine.

My illness may limit certain aspects of my life, but it does not limit me.

I do not need pity. The fact that a stranger can't comprehend how a young woman can be happy while living with a chronic illness is not my problem, it's hers. And I feel sorry for her. She was horrified at the thought of spending one's day watching birds out the window or taking pictures of native wildflowers with a loved one. She can't comprehend how I can be content with the life I have . . . she doesn't realize the value of the small things. Sometimes, the small things are larger than we think.
so i'm in the mood for some more music. all day, i listened to a scrambled mix of Shane McGowan and the Popes (two albums), the Pogues (1 album), Voltaire (1 album), and Sarah MacLachlan.

So now I'm in the mood for something different. With 600 CDs to choose from, this should be an easy task. Of course not. Skold, Mike Patton, Skinny Puppy, Faith No More, Enigma, Fantomas, Enya, Garmarna, the Gathering, Rasputina... There are too many choices. There's stuff in those cabinets I didn't even know we OWNED. Yet there they are, sitting in their dust free little shelves.

So I found Brendan Perry's solo album. Calm, soothing... I'd rather listen to something which will pump me up, but my ears want crooning. I can't wait for the next Fantomas--it will perfectly suit my nighttime needs.

Anyhow, the doctor got sick of me calling daily, so she prescribed Neurontin. This is after she attempted to prescribe Elavil. Been in that hell once before, no thanks. I don't know how long I'll take the Neurontin, since the neurologist will want me off of it for the EMG, I just hope it helps some of this pain.

Of course, for kicks I read the adverse side effects. I'm one of those kids who gets the worse of the worst with most meds. Advil makes me hallucinate. Trazadone made me believe my teeth were engaged in a conspiracy against me.

I'm sorry, my teeth should NOT mutiny. I sustain them with blood, nerves, and oxygen.

Needless to say, this is why I avoid meds and attempt to manage my health on my own, whatever the cost. Of course, sometimes I need help.

So, I have to ask my epileptic friends... Are all anti-convulsants this risky? Do they all have these horrifying potential side effects? I know the brain is grossly misunderstood, but DAMN! they don't allow painkillers on the market which have a "Frequent" side effect list including anorexia, flatulence, hostility, pneumonia, etc. Okay, so they do... Frankly, I'm looking forward to the "strange feelings", lip hemorrhage, antisocial reaction, testicle pain, odd smell, and skin necrosis. (Those are classified rare and infrequent, btw.)

I've listed a small sampler of the adverse effects listed.

That doesn't even account for the dizziness, ataxia, and sleepiness expected from this type of med. I use "expected" loosely. Folks, I'm a guinea pig. They don't know how or why this drug works. Since the alternative is not washing my hair until I can stand, I guess I'll take it.

Yes, I think this is funny. I cracked up reading this med sheet out loud during dinner. My husband freaked out, but did find certain elements funny. Would we laugh if one of them afflicted me? Yes, but it would be a bitter laugh.

Anyhow, I'm slightly more mobile. Dizzier, but I was dizzy before I took the med. That's just one of the parts of fibro and cfids that gets out of control when I can't sleep.

So I'll take my Melantonin soon and find a book for half an hour... Then I'll sleep the sleep of the restless. I'm in a good mood, though. Back to my normal, feisty, cynical self.

BTW, does anyone know an antidote for dizziness? It's not causing too much nausea (got ginger for that), but it's affecting my mobility. When I'm standing, it's the "room falling up, i'm blacking out" dizziness that causes things to fade. It lasts after I've been upright for awhile, assuming I don't fall down immediately. If it's blood pressure, I don't know how I could add more salt to my diet without turning into a a mummy. While sitting, my couch turns one way, the room spins the other, and the floor moves up and down in waves.

Odd. Maybe I should try painting my view. Of course, the easel would tilt the wrong way most of the time.

So it goes...
It's amazing what a simple anti-inflammatory can do. Yes, I'm still in pain, but the pain that pushed me over the edge--the headache which sent me to bed Monday night and awoke me Tuesday morning--is gone. It was just a headache.

Head pain is something that quickly pushes me over. I'm not sure why. It's all centered in my jaw, which is out of alignment (TMJD). I had horrid migraines in high school, but I underwent treatment around that time and while I was in college, and eventually those daily migraines ceased. I still get one or two a year--especially if I eat something crunchy, chewy, or hard. Stress can also bring them on, and I'm guessing yesterday's popcorn and the recent stress made me clench my teeth a little too much and irritated that susceptible joint in my head.

Boy came home, found me listless and in bed and realized I was very close to a scars-in-palms inducing migraine. He scoured the house for my old meds and then ran to the store for some alleve (miraculously enough, naproxen does worlds for me at times) and convinced me to swallow a couple with some Dr. Pepper.

He's such a good boy. I ended up sitting up for dinner and laughing at him. I'm still angry about the rest of my pain. It's still very close to the edge--closer than I it want to be.

Tomorrow is Wednesday, maybe I can convince boy to give me a massage after work. I'll need it after talking to my doc.
rootofnewt: (jude)
So the hives that came to a head Monday morning were an allergic reaction to hydrocodone.

I'm back to life without painkillers, sleep, or relief... And I'm at the end of my rope.

I hadn't realized how tenuous my grasp on sanity was. I didn't realize how close to the edge I'd come. My pain management cost me my career, my social life, and my housework... Now I don't have any of it, nor do I see how I'll cope for the next month until the neurologist can see me. And I don't have any guarantees that he'll be able to help me.

This is not something I can handle. My doctor is afraid to prescribe anything else because of my allergies. There are still a couple families of painkillers I haven't been exposed to, so why the hell can't I try them now? She should know that something was up when I actually ASKED for painkillers. I avoid them at all costs.

It's not like me to sit and cry, but I have a feeling that's what I'll be doing. It's all I have left to do.
rootofnewt: (jude)
Today was a little better. A friend of mine drove me to the doctor. She was having a computer crisis, so I brought the laptop. She and her daughter sat down in the coffeeshop while I talked to my doctor.

My doctor read the notes from the podiatrist. He thinks that I'm showing signs of peripheral neuritis/neuropathy and that it needs to be checked out ASAP. My doc didn't want me taking Neurontin (gabapentin) before I see a neurologist (could mask test results). I explained that this nerve pain is making it very difficult for me to sleep. Without sleep, I cannot manage the fibro/cfids.

She told me she could only give me narcotics. Previously, I've turned down offers of narcotics and stronger drugs. At that time, however, I was still driving, working, babysitting, living by myself, etc. I can't take loopy drugs while doing those things.

Today I told her I didn't care. I pointed out that I cannot function like this, so altering my state of mind isn't going to hurt me. I don't get suicidal on narcotics, so she agreed that pain relief is better than going insane. ;)

Unfortunately, Vicodin only works on me for about three hours. I'm going to take it when I need to sleep and when I can't stand the nerve pain (dealing with it has cost me a lot of energy and mental stability). So I have relief. What's more, it also helps the fibro pain, which has gotten less tolerable (less sleep, again). It doesn't help the joint pain, but I can cope with that.

Hydrocodone, however, makes me very loopy. It also makes me quite talkative and excitable. It does *not* make me sleepy (no narcotic makes me drowsy, actually. codeine actually gives me insomnia). So I've been entertaining for boy tonight.

My doc is trying to get me into a neurologist sooner, rather than later. I appreciate that effort. Saves me the hassle of trying to find someone, calling them, arranging a records transfer, etc.

So it goes. I'll go to bed soon. I'm waiting up for boy. He'll brush my hair so that I don't awaken to find gutterpunk rats squatting in my coif.
rootofnewt: (jude)
I really despise pain. Most of the time I can bear it and I have a really high tolerance, but nights like tonight, I just want to curl up inside of myself. I've got the laptop on my lap because the heat soothes my leg muscles, but I wish I could have a laptop for my neck, shoulders, wrists, arms, feet, head, knees, and everything in between.

I think it's ridiculous that doctors expect fibromites to put up with pain. This pain is often worse than that from a non-compound fracture. It's all-consuming and relentless. Yet, we're expected to get by without any type of relief all too often. Since I'm in my twenties, the docs say "Oh, it can't be that bad... besides, you don't want to get used to the pain meds when you've still got 50 years ahead of you."

I'm sorry, it IS that bad and I don't care how much longer I live, because the pain is here NOW. Judging by my family, I've got another century to live. I do NOT want to live another century in chronic pain. I've already dealt with it for a few too many years as it is. I'm twenty-five. Gimme a break.
When I got ill, I let all contact with my old friends from home drop off. I stopped contacting my college friends. Basically, my core group of friends now is comprised of the ones who persistently emailed me, made an effort to stay in contact with me, or lived with me.

I have various reasons for doing it. I discovered that twentysomethings are very disturbed by the concept of chronic illness. We don't like to admit that we're mortal, vulnerable, or that we'll eventually get old. Some folks avoided me because it scared them. Ever accomodating, I didn't want to cause unease. I felt guilty. I was once very active, both physically and socially--very energetic and bouncy. When I got ill, everything slowly ground to a halt. For awhile, I'd spent all week in bed just so I could hang out with my boyfriend on Friday or go to the club with my girlfriend on Sunday. Then even that got to be too much.

Recently, some old friends have been contacting me again. At a friend's wedding last year, I ran into a few old friends. I went to an alumni weekend at my old high school in May and caught up with some others. I explained that I'm different now and you know what? Most folks accepted that. I even discovered that a lot of my high school friends burned out early and were just now going back to finish their degrees/dreams (seems common with students at state academies with advanced curricula). There are a few who are still weirded out, but they may come around. Even if they don't, I know that I have enough friends I can count on. These people were a huge part of my life for a few years. I don't want to lose them again.

And I've had friends from my college years come back into my life. That, too, is excellent. They realize they won't be using me for a networking connection, but I've become rather helpful in entertaining their out-of-town guests during the workday. It seems that, for the most part, a lot of people try to understand... or, at the very least, empathize. I appreciate that.

I appreciate those folks who've been with me through the years. I'm grateful for the support, love, and companionship I've received. I'm glad that those of us who parted on less than pleasant terms are now able to chatter away for an hour. Thank you, all of you.
I met boy on the metro this morning. We'd each crashed at a friend's place, albeit different friends. We came home, showered, then went off to see Planet of the Apes. I was exhausted on the metro and bus ride home, but after getting home and romping with boy, I realized that I couldn't put off going to the grocery store. Boy really wanted Indian food tonight (fortunately, he wanted Tasty Bite Indian, which is uber-quick), but we were out of rice and I wasn't in the mood to make flatbread. Walking down the block isn't a fun prospect when one's all tired and achy, but the thought of making flatbread to accompany dinner was right out, too. Kneading--bad; having boy carry groceries--good.

So we went to MacGruder's and picked up a few things, including rice *and* flatbread. Oh, it was quick rice. I really prefer the real thing, but boil-in-a-bag has its moments. I came home and realized the kitchen was still a mess. One of these days I'm going to have kitchen gnomes, but for now I'm stuff with elbow greasemonkeys. I cleaned the kitchen, which is something boy normally does for me. Then I cooked dinner, which consisted of boiling lots of water and tossing packets in. After most of the food was cooked, I heated up the flatbread. I didn't drop any pots of boiling water today, but I managed to drop each utensil at least once. It's good to know some things don't change.

After dinner, boy took off to watch the opening credits of Iron Chef. Something came over me and I emptied the dishwasher, rinsed the dirty dinner dishes and loaded those in the now-empty dishwasher, and put the leftovers in the fridge.

Dinner clean-up is not my realm. I usually cook, though boy will do it when I'm not feeling up to it. He does clean-up duty almost all the time. He usually handles emptying the dishwasher, too. I feel bad, but it's a necessity with fibro/CFIDS and carpal tunnel. I break too many dishes. They're hard to hold on to and seem to triple in weight instantaneously. Corelle is pretty hardy, but my pattern is discontinued, so I don't want to break any more of my set.

I'm very proud of myself for doing so much today and last night (very full schedule). There was a time when I took my abilities for granted. I could run or swim several miles, climb a rock face, handle complex equations, or speak at length on Soviet nuclear submarines (in Russian). Now I'm thrilled when I can walk down the block to the Russian market and read the ingredient labels on the candy. I don't take it for granted, though.

I've spent days and weeks in bed. I've gone through periods when I couldn't comprehend written English. The toll invisible illnesses take on one's body and mind is staggering. In spite of all I've gone through and how far it seems I've fallen, I consider myself incredibly lucky. I have friends who are far sicker, folks who must stay in bed. I have friends who are dying of terminal illness. I've still got my relative health and, when I take care of myself, my mind.

I've also realized that I have a lot of time to get to know myself. I have friends who don't have thetime--or the energy--to think about who they really are. I know who I am and, more importantly, I both love and like me. *Me* I think that's a pretty cool accomplishment. I'd say it's worth all the pain and brain fog, but I'm not stupid. ;)

And I think a very comfy bed is calling me now. mmmm, bed.

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