There's something about sticking a needle into yourself that helps impress upon you that this is Serious Business. Still, a fellow QR fan injects herself every day -- she has MS. Makes me feel like I dodged a bullet.
Isn't it funny? I whine and bitch about RA and narcolepsy, but then I look at other things and I think I got off easy.
It's all about what you know. And it's okay. I'm sticking a needle in myself every week. I limp. My feet hurt. I have no shoes that fit over my bone spurs. I have narcolepsy and I'm terribly tired all the time unless I take my wake up pills. But it's not bad. I'm not going to decline neurologically. My chances are good that I won't end up in a wheelchair. And I controlled well by the pills and now the shots.
Perhaps I need another shot.
Still... my injection site still sort of throbs. I had to puncture the top of the bottle a few times to get the last of the MTX. My needle is so freaking thin that that probably blunted it.
I remember the gold shots. That needle was SO BIG! I could see through it.
Still, someone else had to jam it into my skin.
And it was my poor ass that got injected.
I looked back once and all I saw was his face smiling, the needle crying...
Walking out of his room with mirrors....
QR on the brain
sleep Les. Go to bed.
The good new is that I've tagged entries back until October. I'm realizing that by tagging them, I am really putting together a really comprehensive way to scan my journal for stuff that will be useful for my thesis.
I have that "2 am agitation" -- I need to go to bed, but I'm afraid that when I wake up, I won't be as productive.
Someone make me sleep.
I'm such a geek.
He's at school and I slept all day. I got some penicillin's this morning and some mucinex. bleh. The antibiotics wipe me out, but man... I like mucinex. I can actually use my nostrils for breathing some of the time, which is a HUGE advantage over yesterday.
So yeah, here, snotty, not doing much, but recovering. Happy V day.
Blind you search for the truth.
I see myself in you.
Winding at light speed through time
Jesus Christ, this CD is good. Thanks to nasus221for reminding me to listen to it.
I have been sort of Mindcrimed out lately.
I've seen the band four times -- three time, they played Mindcrime. The other time, they played mostly pre-Mindcrime. Yes, I love Screaming in Digital too, but I'd also kill to hear some Q2k or Tribe. My fault, I guess, for not hitting a concert sooner.
Like congested as hell. Like there is so much crap in my nose that I actually cannot breathe at times. I got a fountain drink and when I tried to suck on a straw, my head and ears popped like they do after a bad airplane ride.
My favorite quote of the day:
A friend: "You poor thing. Go get some zinc."
Me: "Zinc? I'm getting some big-ass antibiotics, that's what I'm getting."
I try to stay away from antibiotics because they make me so sick, but this is week three of this cold. It's safe to say it's now passed into sinus infection stage. I see the doc tomorrow.
Also, I get a cold every six weeks, like clockwork. But I am more worried now -- if this were a movie, we'd cut to a picture of my rheumatologist, right after I'd become his patient. I had told him that I'd been on methotrexate for 10 years and was somewhat cavalier (sp?) about getting my labwork done. He said, "There are three of us in this area that work with methotrexate, and every year, one of us loses a patient to it. That's about 1 in 100."
Me: (thinking of all the time I'd had a beer or two, when I'm really not supposed to) "Liver failure?"
Him: "No, usually some sort of lung infections."
At that point, my chest had been hurting for about a year, so I really sat straight up and listened.
I've always known that my health will be more complicated than other people's. But, lately, I'm starting to really understand that in a way I haven't before. Perhaps it's like my dad's death -- having the journal on here made what was just under the surface become visible as I wrote. Almost all of my entries deal with my dad, when I don't hardly deal with him in rl much.
(My mom, in that sweet 1950s sitcom way, called to check on me on D-Day and said "I know it's our sad day." It was the day the bottom dropped out of our lives, but she calls it "our sad day." Very sweet, very mom, but I prefer D-Day, or Dead-Day, as paperflowers calls it. We are so cool and full of gallows humor when we're together. Wise in the ways of the world, we see ourselves. Hard to believe that was 6 years ago.)
I think me thinking more carefully about the long-term impact of my rheumatoid and other health issues is just a function of getting older. 30 itself is arbitrary line, but over the past few years, I've really had to do the "What I want to do with my life" thing -- graduating school, getting married, living away from people who take care of me. (Let's face it -- hubby tries, but the day I fainted, he was flabbergasted and half-way tried to catch me, but was in too much shock. All he could say was "You threw up on the floor" I'm on my own here. His family has rather low drama, where as I woke up every morning to my dad puking. Not much except a severed artery phases us, and that I think I could handle, if I had enough towels.)
Having that serious health crisis last year at this time, which was diagnosed as everything from mono to depression to narcolepsy (I think narcolepsy is correct) really hammered it home.... it was part of the mini catharsis I had that day in Tahoe, when I just took off walking for an hour or two. I'm going to have to face some scary things by myself and my health is one of them. I can die from this, particularly as I get older and no longer have the "young and healthy" thing going for me.
That being said, my chances of dying from this now aren't very large.
As I get older and have spent more of my life on medicine and the disease process works, my chances will increase. I have already spent almost half my life taking at least one pill a day, sometimes upwards of ten.
I exaggerate the risks of this because I struggle to wrap my head around them. What will probably happen is that the rest of my life will be like this -- cycles of flare and remission, managed by medication. There will be stretches of weeks or months where my feet hurt, and I consider buying a scooter, or my hands hurt, and I can't type. There will also be stretches where I can do marathons and pick up the kids I work with, and lift 100 lb clients out of wheelchairs and onto beds and toilets. I will get a little bit worse and a little bit better, but god willing, not a lot worse. So far, I only have minimal irreversible damage and that's the stuff that hurts like hell, once the cartilage starts going away. (poor feet. I wish I had appreciated you and how wonderful you were back when you were all there.) I imagine I will start to get worse gradually as damage happens, but I'm not looking at terrible disability, I don't think. Not like I was when I was 15.
There are chances, though, of scary shit, of lung infections and pneumonia and heart attacks. I imagine that will eventually get me. I have always thought that I wouldn't live past my 50s, but I think that's a natural thought in someone who had a parent die young. There's lymphoma and leukemia, both of which I'm at an increased risk for. And what sort of side effects will they find from the biologic agents? Those things scare me even more than chemicals, for some reason.
I'm sure this latest bout of stuffiness is brought on by my predisone and by taking my methotrexate last week, even though I knew better. It'd been three weeks though! My feet were hurting.
That's enough wallowing in self-pity. To tell you the truth, I don't feel sad or upset. Annoyed, perhaps, that super-thick-don't-squeeze-the-charminn-
The Ryche mix on my computer is on a live version of "Anybody Listening?"
Nice moment to sign off.
Is there anybody listening?
Is there anyone that sees what's going on?
Read between the line, criticize the words they're selling.
Think for yourself.
And feel the walls become sand...
beneath your feet....
Feel the breeze?
Time's so near, you can almost taste the freedom.
There's a warm wind from the south.
Hoist a sail and we'll be gone.
By morning this will all seem like a dream.
If I don't return to sing a song,
Maybe just as well.
I've seen the news, and there's not much I can do....
I have been thinking about Watchers, especially since my counselor is leaving and I have to start over with someone new. Again. I really think I've made lots of progress with Dr. H and I'm sad to see him go. He's managed to hit on some issues that I was really unaware of...
Anyway, I told him about the watcher idea and how I knew it was unhealthy.
He told me about a Native American (I forget which tribe) concept of "borrowing medicine." If someone in the tribe was about to do a task they were unsure of, they might channel the ability and spirit of another member of the tribe who excelled at that task. It's part of being inner-connected, which Americans tend to shy away from.
My personal variation on that, performing in a way that matches how I want to be seen through the eyes of a watcher, isn't necessarily a bad thing, he says. I think of how it made B. a concept and not a person but Dr. H wasn't really concerned with that. I knew he was more, right?
It's a neat metaphor. I remember my hapkido instructor saying that he would borrow our energy when he went up for master status. I had no doubt that he could channel energy -- there are some people that are magic in a way that defies explaination and he was one of them. I could feel his help sometimes, even when I was terrified. I remember when I had to spar with him and how I ended up across the room every time I tried to land a punch, but with no pain -- it's like he shoved me there with energy alone and not by kicking or hitting.
Anyway, I feel like suddenly someone has given me permission to enjoy the fact that I channel and that I perform for my Watchers... even if they are imaginary. The idea of borrowing someone's medicine is comforting and friendly and doesn't seem as weak and co-dependant as other metaphors. He said that others are probably channeling me right now, imagining how I'd handle a situation or how I'd write something, and taking a course of action based on that.
I'm at peace with that.
This guy is good... I'm sorry to lose him. I feel like he has a way to see through what I think my issues are and get at the real issues that I've kept hidden from myself. I think I'm lazy, I think I can't time manage, he points out that it's because I give too much time to others and don't think that I'm important enough to devote time to. I always thought it was an avoidance/fear of failure thing, but I see the whole issue so much more clearly now. The fact that I got grading done with minimal self-hate illustrates that. I also was able to look at my schedule, see exactly what needed to happen to get my grading done, and say "no" to everything else. That's pretty cool. I hope the next person I go with is half as insightful as Dr. H.
Although, when I first started seeing him in June, he said he was a big believer in short term therapy -- 10 sessions or so. He didn't mention that after a session or two with me. That makes me wonder how fucked up I am. :) It makes me sigh to think I gotta start over with someone. I feel pretty psychologically healthy, no more or less messed up than the average person. But I also think that being in counseling helps with that. I might be one of these people that see a counselor their whole lives. Counseling junkie, I call it. But, well, notice that aside from a few rants and getting PMSy with the hubby, I'm 100% better than I was this time last year.
I was feeling bleh again today. Like really bleh -- dead bleh -- sleep cause I don't want to be awake bleh. But I finally got myself up around 9 ish and ran by a friend's house. i was supposed to show up earlier to watch a movie, but I didn't feel like it. Anyway, it was at the house of the mom of the boy with autism who shit all over yesterday.
He has a tooth knocked out and they are waiting for medicaid to fix it. Meanwhile, he's in real pain. Hence the hair pulling and shit smearing. He was okay tonight but then woke up screaming and biting his arm. Poor baby. I came in and he got ahold of me really really good -- double hands in my hair, pulling. Then he got my cheek and pinched it. What he's saying is "this hurts, dammit!"
What I was saying was "yeah, I can see that baby. Now let me have my hair back, kthxby." I want medicaid to have to listen to this boy's screams. His mom wants to mail them his shit-smeared pillow as a reminder that this is urgent. I suggested letting him run loose in the office of whoever is dragging their feet on this issue.
But still, an hour of being around people did me good. On the way home, hubby bought me a Steak and Shake. Yay!
My counselor asked me once if I might make my health worse sometimes so I get a chance to focus on me. I mulled that over. I like dealing with health related crap -- not the effects or the pain or the fatigue, but the doctors and paperwork in some bizarre way. It's like I exercise control over it. It's how I get permission to focus on me.
I don't think I make it worse. I think sometimes I see how much I can take before I break myself, stress-wise. But I think that most of my unhealthy habits are maladjusted coping mechanisms. The bad food, the sugar addictions, Dr. Pepper etc. are a way of trying to give myself an energy boost as I struggle with chronic energy issues. And really, as bad as I felt at 9 pm or so, a big ass sippable sundae was a pretty effective way to combat that. The over-scheduling that I did last semester was a deliberate attempt to give myself structure, thinking that my problem was that I was too lazy.
Today, the sippable sundae and going out and letting a boy pull my hair was the lesser of the evils. Oh yeah, I was in a hurry this morning, opened a cabinet, dropped something, bent down, picked it up, stood up as the cabinet door swung back over my head.... yeah.... I hit my head so hard that I had to lie down on the tile -- well, I fell down, but didn't lose consciousness, wasn't bleeding, and stopped feeling like I was going to throw up, so I went ahead and went to work. (I was late). I was paying that I wouldn't pass out in the car, but after a block, I was fine. So when the boy grabbed my hair today, it hurt like hell. but it's really just tender. Not even a headache.
Yeah, and I can't find my prendisone. That's two days without it and I worry my kidneys will shut down. I'm on a low enough dose that shouldn't happen, but it does explain my mood.
feet are much better after two weeks on predinsone. I didn't get to take my methotrexate this Sunday because I have a cold and I was afraid of making it worse. *sigh* I cut down to 7.5 mg of pred for the next few weeks.
Also, the prendisone has eliminated the need for the provigil for now and I'm more used to some of the emotional side effects (I tend to mood swing on pred.) I need to start fading my provigil in as I fade the other stuff.
Yay for good health. But, I know I need to go get my disabled hang tag from the DMV (THAT was a long story where the bitch lady at the DMV destroyed my paper because the dr. didn't write his address on it, and she wouldn't let me write it. HE SIGNED IT!). Anyway, I need to do this, get my permission to ride in the golf cart, and start personal training now. It's easy to pay attention to my health when it's bad -- when it's good, I'm proud, almost as if I accomplished my feet not hurting all by myself.
I need to not take on too much and remember that although I feel good now, I need to maintain a schedule that I can stick with when I feel bad.
Naps are down.
Dr. Pepper consumption still dangerously high, but I feel like shit is coming together for me.
Oh yeah, don't take airbourne before going to bed. HYPER!
I think I need some nyquil.
Got hair cut short again.
Trying to wear make-up regularly for the first time since 1991. I'm just tired of looking so pale and tired. I also, just, well, I don't know how to describe it but I want to convince myself that it's okay that I want to look nice. It's okay to want things for myself -- not to look in the mirror and groan at my frizzy hair, but to say "It's okay to invest the $6.00 in hair products and the 5 minutes every morning to do something about this. No, it's not the most important thing in my life, but I am important, and if I like it, well, it's worth it."
Today was the most wasted day of my life. Sat in a room for 8 hours, watching a badly recorded tape of an 8 hour training. One lady was rude and insulting and wouldn't shut the hell up. I wanted to kill her. I just got so sensory overloaded, between the small room, the big ass dose of prendisone, the provigil, the caffinne that I kept drinking to stay awake. I was tired and jittery and ready to throw a full out, autistic, overstimulated TANTRUM!!!
Then 2 hours at the Olive Garden. But it was heavenly.
Yes, we have gotten our loan checks for the semester!
And I'm making a plan of attack for tomorrow. That's my goal right now.
My feet are sometimes better, sometimes worse. I'm realizing that a week or a month of foot pain doesn't mean that I will ALWAYS have it, but it's good to plan ahead. The campus Center for Students with Disabilities has a golf cart service that I might take advantage of. Between busses and golf carts, I should be okay. The bus comes from my doorstep, practically, to the place where my office is. the rub is that I'm teaching clear across campus. I am thinking of golf carting that. Barring that, renting a scooter would be cool. I'd only need it for four months.
It's an identity shift every time I have a health shift. What I need to do is develop a stronger sense of self that isn't dependent on how my feet feel.
There's more to tell here, but I am running late. Gotta run!
from the transit site:
Under the Americans with Disabilities Act, disability
alone does not qualify a person to ride paratransit. A person must be
functionally unable to use the fixed-route bus service. Paratransit
service is provided to the following three general groups of persons
Persons who have specific impairment-related conditions which make it impossible, not just difficult or inconvenient,
to travel to or from the bus stop.
They didn't include PAINFUL!
I'm just mad right now because I'm realizing that I'm pretty mobility impaired for the first time in a long time. *sigh*
Less methotrexate = more pain = less energy = shitty diet = ulcer
less methotrexate = more pain = more celebrex = ulcer
ulcer = nausea = less interest in food = shitty snacking instead of eating = less energy, etc.
All the way around, it SUCKS!
When I'm a good girl -- when I take every pill when I'm supposed to, as I'm supposed to, I get this chronic nausea and stomach pain. It might not be an ulcer, but it's sure not fun.
How I've dealt before is cutting out EVERYTHING not needed -- vitamins, even my folic acid, anti-inflammatories, birth control, etc.
I can do some of that. I can cut vitamins. But, well, I'm married and I need the birth control consistently.
And I'm on antidepressants now and I can't just stop them without going a little wacky.
And my dose of methotrexate isn't enough to prevent pain. I'm a little annoyed with my doc -- I feel like I was relatively stable, was on a high dose, but an effective dose of methotrexate, and was doing well. But cutting my dose in half and adding celebrex, he hasn't made me safer (he thought my mtx dose was too high). Studies are showing that cox 2 drugs don't necessarily prevent stomach problems. 17,000 people with arthritis die of bleeding ulcers every year. 1% of the people on methotrexate die of it every year. I know my chances are probably better with celebrex, but I've been on a stable dose of mtx for 10 years. Why fuck with it?
To top it all off, the pain is seriously limiting my mobility. I make decisions based on my feet again -- pull into a parking lot and decide whatever item I wanted isn't worth the walk. I risk parking tickets because I can't walk to school anymore and can't afford the parking deck. I look longingly at scooters on stores. I want my disabled parking sticker back.
I fear that my foot erosion is worse, and possibly has started to erode the cartridge.
I will list my demands when I see him next week:
I want a foot and hand x ray.
I want to go back to 22.5 mtx a week.
No celebrex. I'm tired of puking up my guts.
Give me an assful of steroids to get me over this hump before my joints get damaged. I know how risky steroids are, but dammit, wearing away my cartridge is risky too. He can put it in injectable form, if he'd like, that way I don't puke it.
Maybe I should switch to the injectable methotrexate so I don't feel like ralphing every time I look at the medicine bottle.
sorry you had to hear this.