January 28th, 2009
Yesterday might have been the worst “disease day” I’ve had in a few years. The full implication of the side effects from the prednisone came crashing down as I came face to face with the crazies. Suppressing my immune system means I keep catching all kinds of infections, which aren’t worth noting except to say that combined it’s all just a bit too much. Spent much of yesterday vacillating between bawling in my cubicle and wanting to drive myself head first out our 20th floor window. I know it’s not rational. I know it’s the prednisone. Having been through this all before, I can recognize that the medicine is turning my brain into a gloomy source of desperation and despair, but it still doesn’t make it any easier to get through the day.
Sometimes, just sometimes, it’s hard to stay positive when something so strong pulls you in the other direction. I fell down a little yesterday and just cried for a good long while. My RRHB was very kind by the time I got home and let me get it all out. Really, all I wanted was someone to tell me that it’s all worth it, that it’s a good thing to keep fighting the disease, that it’s a good thing I’m not dead. I know none of this is rational. But there are moments when I can’t pull myself up from under the weight of it all.
Today, though, is better.
January 18th, 2009
We just finished watching The Big Chill. All the chores are done. I’ve got the last load of laundry in the wash so two more buckets to fold, not bad for 5 PM on a Sunday. Usually, I leave the laundry until the last possible moment and then it gets folded on Tuesday, maybe Wednesday. My head’s so mixed up these days that everything’s coming out all wrong and the more I keep busy, my fingers working, my shoulders hunched, the less time I can dedicate to wondering why, yet again, the disease is back. Wondering how come I have a huge list of all the things I want in my life and am not brave enough to get them all out in one place, to say them out loud. I know one thing for sure: perhaps I need to stop watching Intervention.
I’m halfway through The Given Day and Once (short stories are very good for the commute). I was reading one on Friday and was so engrossed that I didn’t even notice my boss standing next to me on the subway. Whoops. The days are flying by and this week coming up proves to be just as busy. One freelance assignment, The Jersey Boys with my in-laws, my RRHB has a show on Friday night, and then we’re seeing a hockey game with my dad (the Marlies, not the Leafs; we’re not that connected) on Saturday night. I think I might have to call in sick on Monday because I’ll be so tired.
Disease, what disease? That’s what I’d love to say but I feel rotten this weekend. And that’s hard to admit. Overall, I’ve been feeling so much better — doing the GOOP detox and not eating sugar or dairy during the week, walking, restorative yoga earlier today — but sometimes I just want to kick and scream and shout, “why f**&ing me.” And enough is enough already. But it all just doesn’t work out that way, does it? What I need is a top 10 list for dealing with super fancy diseases. Anyone got one of those?
January 10th, 2009
It’s been a hard week, I’m not going to lie. In a way I had worked myself up for it, knew that by taking the prednisone for a month this past December, and by how I was feeling that the disease was flaring. Finding myself again at the crossroads: my body working against me and me working hard to change my life only results in more disease activity. Sometimes, it just gets you down. There’s a lot of protein in my urine and my creatinine is sneaking up again — key markers in terms of the Wegener’s being active in my body. It’s nothing dramatic, it’s just me being back on medicine.
At least this time the Super-Fancy disease doctor asked me what treatment I would prefer. I rallied hard against the methotrexate. I really don’t like giving myself and injection once a week. But maybe that’s just because my RRHB and I have been watching way too much Intervention (holy crap is that show addictive; how ironic). Plus, I can’t gain back all the weight I’m trying so hard to lose. I managed a month on prednisone with really no change and I can’t go back to marshmallow ragdoll on methotrexate. Kindly, SFDD agreed to let me go back on imuran. Baring any dramatic episodes like the last time, let’s hope my body responds well and my bloodwork starts coming back with some improvements.
I have to say, though, that after months of feeling awful, of catching everything that wandered by, of battling just to get out of bed in the morning, that I’ve starting fresh in the New Year with better eating habits (no sugar [we'll see how long that lasts] this week; no dairy next week) and walking both ways to the subway in the morning. You know, I’m actually feeling better. I had energy all week and only one bad day (due to mucho stress at work) where I crashed the moment I got home. Overall, I’ve been reading more, sleeping fine (yes, chemically induced but without it the prednisone crazies will come up and bite me on the ass), and getting a lot of stuff done on a day to day basis. My horoscope is on my side, that’s got to mean something, right?
Now the goal becomes squeezing in some writing.
December 10th, 2008
Back on meds. I think it’s the most depressing news I’ve had this month. After valiantly battling back to health, I saw the Super Fancy Disease Doctor today and even though my tests are looking okay, my symptoms are of concern. He doesn’t know if the disease is flaring yet but to be careful, he’s put me back on the dreaded prednisone. I hate prednisone.
I go back to see him in a month and then he’ll decide if I need to go back on the methotrexate again. I really don’t want to do any of it. I really don’t want to cry either but that doesn’t seem to matter either.
November 25th, 2008
It’s been no secret that I’ve been feeling under the weather for weeks now. It’s funny, I can usually pinpoint the exact moment of when it all started to go wrong, and this time around it was the second week of September when my mom passed away. I think trying to hold it all together might have done me in and for the last few weeks I’ve been having disease symptoms. Symptoms that can also be explained by other causes: a fall down the subway stairs, yoga after a year away, terrible shoes, all could be the reason for my joint pain. The cold that simply refuses to die could be the reason why my sinuses are so besieged at the moment. The exhaustion from a very busy life and the time change could be causing the sluggish, always-tired feelings that I wake up with every single morning. But I can’t say that I’m not worried. I can’t say that I’m not totally freaked out that in the few months I’ve been off the needle that the disease has reared its ugly head. I’m just trying not to totally panic and make it even worse. Cross your fingers for me.
July 15th, 2008
This morning was a great bloody morning. I rode my bike to work. Now I know I’m late in doing this but I simply couldn’t get my sh*t together before this morning. My timing, however, couldn’t have been more perfect as I had totally forgotten I needed to see the Super Fancy Disease Doctor at 9:30. Which meant that I hopped back on my bike and pedaled myself over there just in time for my appointment with one minute to spare.
The good news?
I no longer have to take ANY disease medication!
It’s just for three months. If he sees any disease activity whatsoever they’ll put me back on a low dose of prednisone or maybe even back on the needle, but for now, I’m disease and medication free.
The sun is certainly shining.
March 10th, 2008
“…At her time of life, anything of an illness destroys the bloom for ever! Hers has been a very short one! She was as handsome a girl last September as any I ever saw, and as likely to attract the men.”
From Sense and Sensibility.
My family doctor to me upon learning of the treatment for my disease all those years ago, “It’s such a shame that this had to happy to such a pretty girl.”
Good to see the sentiment hasn’t changed in three hundred-odd years.
March 5th, 2008
Love arriving at the hospital an hour and a half before my regular scheduled appointment to get a chest x-ray only to find that the intern has filled the form out incorrectly, which means I’ve got to go bother poor Rose, the secretary, and get her to fix it, only to arrive back and discover that it’ll be at least another hour before it’s my turn, and then discover I’ve been semi-usurped by a seriously old woman with a lovely male nurse who are still in the change room when I poke my head in and say, “I’ve got an appointment at three,” which means they whiz me through because the x-ray itself takes approximately 17 seconds, and by the time I finished, she hadn’t even made it to the room, slooooowwww.
And I wasn’t even late for the Super Fancy Disease Doctor.
Where I discover that my tests are excellent (yay! double yay!) even if my blood pressure’s a bit high but that he’s still got no idea why I’m so bloody tired I can barely make it up a flight of subway steps, is it the disease is it not the disease, maybe I’m eating all wrong or maybe it’s just the weather pulling me down, down, down with every original flake that falls from the sky, and when they have no answers it just means you have to see them more often, so I’m back in a month for more bloodwork, more tests and a whole bunch of other non-fun health-related things.
I did manage to get home a little early and took a nice long walk to the streetcar stop.
But I’m so tired that I’m finding it absolutely impossible to even get one sentence down, completely unlike how I was on Sunday where I managed over 5,000 words (in a row!) before collapsing in front of the TV with a delicious vegetarian burrito and the teacher’s words are still echoing in my mind, “it’s those of you who work regularly that’ll survive,” the rest are just “tourists,” and the last thing I want to be today is a tourist in my own writing life, no my own life.
And isn’t American Idol on?
February 24th, 2008
Peeing in a jug really farking sucks.
February 21st, 2008
Woke up after having a good night’s sleep. Finished Jennifer Haigh’s The Condition (#17). And managed to not only be on time for my appointment with Dr. Kidney today, but I was even fifteen minutes early, which gave me plenty of time to spend with Marianne and Elinor Dashwood.
I heart my kidney doctor, he’s kind and gentle, and has always, always been on top of my care in terms of the disease. But today, today is a grand day: my tests (blood work) are better than they’ve been in 5 years. My creatinine level is 97 — it hasn’t been under 100 since 2003, well before the disease flared this time around.
On top of that, I’ve managed to lose 4 kilos!
So, things are moving in the right direction when it comes to my health. Maybe I should stop complaining about the medicine, because it’s literally saved my life.