Total Raisin Bran

Toes went numb for a couple hours yesterday.

Heart beat really, really hard now for the last few hours. Expecting to stay in bed today. So tired.

more tomorrow,
emma

Cinnamon Toast Crunch

Temperature today of only 98.9!! Lowest it's been in a while. Last day of Prednisone--rejoice!

Really awful migraines last night, plus jaw and ear pain. Went to bed at 10:30, fell asleep around 2, up again at 6. Not sure if I slept any more after that. Kept having paranoia, like sitting up and freaking out because I didn't remember my name or where I was.

My GP doesn't do tilt table tests, so we're trying to set one up through Lake Forest Hospital. My mom is most excellent, and she's found a ton of information on POTS, including who best treats it. There are only 2 "POTS-approved" MDs in Illinois, and 3 in Wisconsin. It's a very new disease, and most doctors don't know much about POTS. We have an appt to see a doctor in Milwaukee in 2 weeks, assuming the tilt table test comes back positive.

In other news, we've switched from Ibuprofen to Tylenol. Woo. Still aching.

I really don't feel like myself today, so I'll stop before I say something stupid.

emma

Blueberry Morning

Yesterday I struggled to stay awake during the day, but I knew if I took a nap it would just make it harder to get to sleep last night. Took the new Rx muscle relaxant Cyclobenzaprine (5mg), went to bed at 10:30, had a lot of trouble getting to sleep. New symptom: a really painful, high-pitched whistle tone in my left ear. Ouch. Only one back spasm, so I guess that's an improvement. Just endless heart palpitations in my neck and wrists, labored breathing. Fell asleep around 4:15, and slept until 11:45. A solid 7.5 hours though, even if it took almost 6 hours to fall asleep.

Tonight we're upping the dosage to 10mg. Hopefully that will help.

Restorative sleep is the best thing for a person. I'm still super tired and groggy.

Trying to challenge myself a little bit physically, although it's sometimes really hard. I stood up while blow-drying my hair today, instead of sitting. Standing for a good 5-10 minutes makes my heart beat a lot harder. Ow.

gotta rest,
emma

Life

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

Berry Berry Kix

Last night, around 11, I suddenly had a ton of energy! Kind of exciting, but I'm feeling it now in my shoulders and hands.

Slept relatively well last night, only took about 1.5 hrs to fall asleep, then a solid 9 hours =)

Today drowsy mostly. Headaches, heart palpitations are my biggest symptoms. Ears really sensitive. Other stuff...stomachaches, etc. Only 5mg of prednisone tomorrow and we're seeing the rheumatologist. Will probably run some more tests. Any suggestions, let me know.

Meanwhile, despite the headaches, I really like reading all these college admission essays. Gives me a sense of purpose, I think. Living vicariously through the over-achievers. Hopefully I'll be back with them in the fall.

suppertime,
emma

Apple Jacks

I've had quite enough of this nonsense. Body, let's get it together!! Agh!

Lots of ear pain last night. Went to bed at 1:30, lay awake for at least 2 hours, listening to music. I must have fallen asleep at some point, because at around 5am I was completely drenched in sweat. I hung my pj's up to dry and they're still wet. Mom says the night-sweats are a side effect of going off prednisone. blah.

Been having a really rough day. Incomprehensible headaches and stomachaches, shooting pain in my chest, dizzy, etc. Had to miss Julia's play at school. Major bummer. So so so tired, but haven't been able to nap.

Still got that fever. Well over a week now.

I liked the "spring forward" though. One less hour of this crap.

time for 60 minutes,
emma

Cap'n Crunch

Last night, took about 3 hours to fall asleep. Woke up a couple times in a cold sweat. Bad dreams I think, plus backache.

10mg Prednisone today. Some improvement in the stomachaches I think. Still headaches, sensitive eyes and ears, palpitations, back pain, chest pain. Especially the upper chest hurts sometimes when I breathe. Kinda weird.

Worn out from a "busy" day.

But I'm having fun rating college essays for U of I's honors program! Hmm...maybe I have a future in college admissions...

the gatekeeper,
emma