Last night was awful. I was up all night, slept maybe two hours between 8 and 10am. Lots of back pain, hot and cold, etc.
Today saw Dr. Bodkin. Taking 5mg/day of Prednisone for two more days, then no more! Hooray!
Mom suggested the doctor test me for POTS (Postural Orthostatic Tachycardia Syndrome). Basically seeing if my blood pressure and pulse increase significantly between lying down, sitting, and standing. And...drum roll please...POSITIVE!! I'm orthostatic! We don't know if that means much yet. POTS specifically is determined by a more involved table tilt test. Will get that administered through my GP sometime soon.
Anywho, she gave me a muscle relaxant which should also help me sleep. And a prescription for Cymbalta (barf) which I think we'll wait on. She had a patient like me a while ago who took some herbal/natural supplement and felt great, so I'm going to try that first. Cymbalta has like 100 side-effects, and I've been down that path before. No fun.
Really bad migraines today. Probably read way too much yesterday. Need to lie down now.
I just want to clarify something. When people ask how I'm doing, and I say "I'm hanging in there" or "I'm doing okay today" or "Just taking it a day at a time"...this means that I probably feel like crap. "I'm decent" means "I'm still alive, and I'm doing all I can to get my mind off the pain."
I realize my manner of speech can be confusing, but *please* understand: I'm not better. If I have a good couple hours every few days, that's really huge. I'm not better yet. Just...agh. Understand.
orthostatically yours,
emma
Showing posts with label Prednisone. Show all posts
Showing posts with label Prednisone. Show all posts
Tuesday, March 10, 2009
Friday, March 6, 2009
Count Chocula
Rough day. Starting to wean off the prednisone -- 10mg today. Hands, fingers, wrists, elbows in a lot of pain. Especially tired. Didn't sleep too well last night, lots of back pain and stomachaches. I dreamt that there were no more pennies in the world! Very sad. Today also chest pain and in the sides of my rib cage. Still got that fever. Headaches and neck aches sporadically throughout the day.
Beautiful outside. Watching the neighbor kids play and ride their bikes up and down the street is a little depressing though.
I'm going to get better! Really!
deep breaths,
emma
Beautiful outside. Watching the neighbor kids play and ride their bikes up and down the street is a little depressing though.
I'm going to get better! Really!
deep breaths,
emma
Friday, February 27, 2009
One Week - BNL
Spoke with the rheumatologist today. She supports another week of Prednisone (15mg/day), but did not seem particularly encouraged by my recent, small improvements of mental clarity. She wants me to pay closer attention to my musculo-skeletal symptoms. I think I need to start keeping an hourly journal. My symptoms have been so up-and-down lately.
Only slept about 8 hours last night. Had lots of trouble falling asleep. So bored. I mean, seriously. For the past 18 years, I have been the definition of the over-scheduled child. Not that that's a bad thing! I like being involved, exploring my interests, utilizing my time and my gifts, being an advocate. Not being a couch potato. For so long, my plan was to impact people, perceptions, whatever. Now I feel like I impact two things: my sofa, and my doctors' bank accounts.
Surely this will change. But for now I am trying to keep myself busy. Boredom doesn't suit me. Nor do heart palpitations, headaches, extreme drowsiness, joint pain in wrists, hands, shoulders, elbows, hips, backache, neckache, stomachache, chest pain, earache, and continued difficulty reading.
Bah. Maybe the Prednisone is just wishful thinking.
In other news, our microwave went on strike, and the new one is humongous. Julia fits in the box.
how many bags of popcorn can you pop at once?
hmm...
emma
Only slept about 8 hours last night. Had lots of trouble falling asleep. So bored. I mean, seriously. For the past 18 years, I have been the definition of the over-scheduled child. Not that that's a bad thing! I like being involved, exploring my interests, utilizing my time and my gifts, being an advocate. Not being a couch potato. For so long, my plan was to impact people, perceptions, whatever. Now I feel like I impact two things: my sofa, and my doctors' bank accounts.
Surely this will change. But for now I am trying to keep myself busy. Boredom doesn't suit me. Nor do heart palpitations, headaches, extreme drowsiness, joint pain in wrists, hands, shoulders, elbows, hips, backache, neckache, stomachache, chest pain, earache, and continued difficulty reading.
Bah. Maybe the Prednisone is just wishful thinking.
In other news, our microwave went on strike, and the new one is humongous. Julia fits in the box.
how many bags of popcorn can you pop at once?
hmm...
emma
Thursday, February 26, 2009
Freda (with the Naturally Curly Hair) - Vince Guaraldi Trio
Hola! Today it is raining! Most sane people don't like rain, but right now I LOVE it! It washes away the bright white snow...the sun is not out...the clouds are pretty dark. Yes! I can go near windows without wearing sunglasses. Still really sensitive to light and sound. Bring on the rain :)
Feeling physically very fatigued, but my mind has significantly fewer, significantly shorter periods of fogginess. Yay for small improvements! Not sure how we'll present it to the doc tomorrow...whether to try to stay on the Prednisone for a few more days or not. Pain: left ear, right shoulder, both hands/wrists/elbows, chest pain, less severe headaches, palpitations, and my low back and hips feel like they're being held together with barbed wire.
But I'm feeling for some reason a lot more upbeat, which seems like a big deal.
Took the Prednisone with pudding this morning--seemed to help stomachaches temporarily.
watching the National Geographic Channel,
I had no idea there was such a thing!
emma
Feeling physically very fatigued, but my mind has significantly fewer, significantly shorter periods of fogginess. Yay for small improvements! Not sure how we'll present it to the doc tomorrow...whether to try to stay on the Prednisone for a few more days or not. Pain: left ear, right shoulder, both hands/wrists/elbows, chest pain, less severe headaches, palpitations, and my low back and hips feel like they're being held together with barbed wire.
But I'm feeling for some reason a lot more upbeat, which seems like a big deal.
Took the Prednisone with pudding this morning--seemed to help stomachaches temporarily.
watching the National Geographic Channel,
I had no idea there was such a thing!
emma
Monday, February 23, 2009
With a Little Help From My Friends - Jim Sturgess & Joe Anderson (Across the Universe)
Little change of plans. To really give the Prednisone a "fair trial" we're continuing the 15 mgs through Friday, then see what Dr. Bodkin says. My tummy's not too happy about it, but whatever. Maybe it just takes longer for some people. Pain, pain, go away...
today: headaches, dizziness, hurts to move my eyes quickly, ear aches, joint pain esp. wrists and elbows, excessively thirsty, difficulty sleeping last night, etc.
We're still waiting for a more detailed report, but it sounds like KF's surgery is "so far, so good" :)
This is really rough, but I know I have a lot of terrific people in my corner. Thanks for everything; even if I haven't had the energy to reply, know that I appreciate you. =]
I emptied the dishwasher today! And folded socks! chyea. big deal.
smelling like fabric softener,
emma
today: headaches, dizziness, hurts to move my eyes quickly, ear aches, joint pain esp. wrists and elbows, excessively thirsty, difficulty sleeping last night, etc.
We're still waiting for a more detailed report, but it sounds like KF's surgery is "so far, so good" :)
This is really rough, but I know I have a lot of terrific people in my corner. Thanks for everything; even if I haven't had the energy to reply, know that I appreciate you. =]
I emptied the dishwasher today! And folded socks! chyea. big deal.
smelling like fabric softener,
emma
Sunday, February 22, 2009
Cold Shoulder - Adele
Two posts today. Today's been bad.
Around 1, I started having a really bad stomachache, so I went to lie down. It got worse. Headache, low grade fever, really hard to breathe, lots of pain in my upper chest, like when you've been running outside in cold, dry air. Pain in my side, spreading through my entire right rib cage like a net of nerves getting zapped by electricity.
I don't know if this is making sense. Thinking is delayed and foggy. Having short-term memory loss. So frustrating.
Anyway, it hurt, so I called to my parents, but they couldn't hear me. I always keep some kind of phone on my bedside table in case of emergency, but my cell had died. So that was scary. But we called the rheumatologist's pager or whatever, and she said that the prednisone was probably causing my upset stomach. Planning to wean off-- 10 mgs tomorrow and 5 on Tuesday. Happy to get off the drugs, although they say depression is the biggest side-effect. ugghhh.
As for the spasms in my chest and side, she said it was probably just a pinched nerve (just? just a pinched nerve?! it hurt a lot!) and that when I go in next week she'll prescribe a muscle relaxer. In the meantime, just took some ibuprofen and tums and rested.
We thought we might have to go to the hospital today. Dr. Bodkin at first thought that my stomachaches might be a sign of appendicitis or whatever that's called. My dad had it. I guess it's good we didn't have to go to the ER or anything, but I'm still in a lot of pain.
I don't get it. I don't understand any of this. How does a perfectly healthy teenager suddenly get into this mess? I started watching the Oscars, but I don't know, I guess I'm just insanely bitter. The world spins on! Everyone's lives go on! Every so often I'm just shocked, like, whoa! It's 2009? Really? Huh...how did that happen? (Slept through New Year's.) Wait, and it's February?
...and i'm. still. HERE.
...and i'm. not. BETTER?!
I don't get it.
patience patience patience patience,
emma
Around 1, I started having a really bad stomachache, so I went to lie down. It got worse. Headache, low grade fever, really hard to breathe, lots of pain in my upper chest, like when you've been running outside in cold, dry air. Pain in my side, spreading through my entire right rib cage like a net of nerves getting zapped by electricity.
I don't know if this is making sense. Thinking is delayed and foggy. Having short-term memory loss. So frustrating.
Anyway, it hurt, so I called to my parents, but they couldn't hear me. I always keep some kind of phone on my bedside table in case of emergency, but my cell had died. So that was scary. But we called the rheumatologist's pager or whatever, and she said that the prednisone was probably causing my upset stomach. Planning to wean off-- 10 mgs tomorrow and 5 on Tuesday. Happy to get off the drugs, although they say depression is the biggest side-effect. ugghhh.
As for the spasms in my chest and side, she said it was probably just a pinched nerve (just? just a pinched nerve?! it hurt a lot!) and that when I go in next week she'll prescribe a muscle relaxer. In the meantime, just took some ibuprofen and tums and rested.
We thought we might have to go to the hospital today. Dr. Bodkin at first thought that my stomachaches might be a sign of appendicitis or whatever that's called. My dad had it. I guess it's good we didn't have to go to the ER or anything, but I'm still in a lot of pain.
I don't get it. I don't understand any of this. How does a perfectly healthy teenager suddenly get into this mess? I started watching the Oscars, but I don't know, I guess I'm just insanely bitter. The world spins on! Everyone's lives go on! Every so often I'm just shocked, like, whoa! It's 2009? Really? Huh...how did that happen? (Slept through New Year's.) Wait, and it's February?
...and i'm. still. HERE.
...and i'm. not. BETTER?!
I don't get it.
patience patience patience patience,
emma
Friday, February 20, 2009
Send Me On My Way - Rusted Root
Happy Friday! Free bagel day at Einstein's :)
The rheumatologist wants me on the prednisone for another week, then we'll be able to fully evaluate its effectiveness. She's thinking of putting me on a muscle relaxer in a couple weeks too, to relieve pain and help me sleep.
The biggest problem I have with the prednisone is that it makes me so hungry! All the time! I'm eating a full meal literally every 3 hours. I feel like a hobbit. Breakfast, second breakfast, mid-morning snack, brunch, lunch, afternoon snack, tea, supper, dinner, dessert... :P haha.
Didn't sleep well last night. Kept waking up thinking I had one day to plan an entire Snowball weekend...which I did successfully by the end of the dream! :) Anyway, today doubly fatigued, especially my eyes, heart, and arms.
Praying for a friend KF in the hospital this weekend, having surgery Monday.
nap time,
emma
The rheumatologist wants me on the prednisone for another week, then we'll be able to fully evaluate its effectiveness. She's thinking of putting me on a muscle relaxer in a couple weeks too, to relieve pain and help me sleep.
The biggest problem I have with the prednisone is that it makes me so hungry! All the time! I'm eating a full meal literally every 3 hours. I feel like a hobbit. Breakfast, second breakfast, mid-morning snack, brunch, lunch, afternoon snack, tea, supper, dinner, dessert... :P haha.
Didn't sleep well last night. Kept waking up thinking I had one day to plan an entire Snowball weekend...which I did successfully by the end of the dream! :) Anyway, today doubly fatigued, especially my eyes, heart, and arms.
Praying for a friend KF in the hospital this weekend, having surgery Monday.
nap time,
emma
Saturday, February 14, 2009
xoxo
You know, if it weren't "xoxo" it would be "ox ox." No animal is half so romantic as an ox, or pair of oxen if you will. Haha...makes me think of the computer game Oregon Trail. I was quite fond of trading with the local natives and acquiring dysentery.
Last night I went to bed at 11:15, took 3 Advil PMs, and couldn't fall asleep until 4:30. Hands and feet really achy, back spasms, wrists sore, really dizzy. Today I've been feeling like my hands are closing in on themselves. Taking a break from reading/writing for a while...time to rest my hands and eyes.
I started the Prednisone today. Feeling a little bit better, a little more energy, at least within the hour I took it. But I'm noticing pain in places I didn't have it before. My jaw feels really tight. And my body temperature appears to change often. Still having heart palpitations and have grown tired in the last few hours. I'm taking 15 mgs/day for 2 weeks. If I don't see improvement in about 5 days, I can stop taking it.
I'm trying not to think about the fact that it's Valentine's Day. February 14th! When I came home for the second time, on November 17, I felt certain that with a little rest and doctor's care, I'd be fully recovered by Thanksgiving: November, what, 26th? I feel stuck. Stuck in the Molasses Swamp of life. And it's not sweet!
Anyway, in honor of Valentine's Day and my deep love for childhood movies, I just watched Babe. A classic! The music is great, particularly the singing mice.
That'll do, Pig.
emma
Last night I went to bed at 11:15, took 3 Advil PMs, and couldn't fall asleep until 4:30. Hands and feet really achy, back spasms, wrists sore, really dizzy. Today I've been feeling like my hands are closing in on themselves. Taking a break from reading/writing for a while...time to rest my hands and eyes.
I started the Prednisone today. Feeling a little bit better, a little more energy, at least within the hour I took it. But I'm noticing pain in places I didn't have it before. My jaw feels really tight. And my body temperature appears to change often. Still having heart palpitations and have grown tired in the last few hours. I'm taking 15 mgs/day for 2 weeks. If I don't see improvement in about 5 days, I can stop taking it.
I'm trying not to think about the fact that it's Valentine's Day. February 14th! When I came home for the second time, on November 17, I felt certain that with a little rest and doctor's care, I'd be fully recovered by Thanksgiving: November, what, 26th? I feel stuck. Stuck in the Molasses Swamp of life. And it's not sweet!
Anyway, in honor of Valentine's Day and my deep love for childhood movies, I just watched Babe. A classic! The music is great, particularly the singing mice.
That'll do, Pig.
emma
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