Sunday, May 31, 2009
The song she chose is quickly becoming one of my favorites. I'm not a huge fan of the picture slideshow, but the melody, voicing, and lyrics are positively captivating. Too good to pass up.
"This is my winter song.
December never felt so wrong,
cause you're not where you belong...
"I still believe in summer days.
The seasons always change
and life will find a way."
Too, too tired.
we will start again,
p.s. AH! I forgot! Evan K. is terrific. Maybe the next Gene Kelly? http://www.youtube.com/watch?v=JiYfZWY0znc
Saturday, May 30, 2009
Thursday, May 28, 2009
I am totally exhausted. The Wienermobile was absolutely hysterical. More later.
Happy birthday to my brother Jimmy! Now our ages are all divisible by 3. Yay! Once we were all prime numbers. I think that was the best. :)
Wednesday, May 27, 2009
I am writing you in my despair. Beware! Read the carton carefully! Whether you go for the single-serve, pint-size, or, my personal favorite, the 10-gallon tub, the industry is out to get us. Sneaky people, I tell ya. So be on the lookout: "Frozen Dairy Dessert" is posing as real ice cream!! NO!! Truly this is an out-and-out crime. If you're a true-blooded American patriot, you will protest the horror. THE HORROR!
So yeah. Popsicle sales are down. Just thought I'd give 'em a boost.
But in all seriousness, it's all frozen yogurt. Yogurt! Who are you kidding? You think you could fool me? I'm a PURIST!
Well I crack myself up anyway. The Daily Show and The Colbert Report are on vacation this week. Just doin' my part to fill the void. ;)
Tomorrow my family and I will be picking up my sister after school...decked out in the Oscar Mayer Wienermobile. Check it, yo. As if we weren't weird enough.
Today: super tired. Stretched. Doing my best to get beyond grief and move on to, well, whatever's next. I'm adding Political Satirist to my long list of career options. Number 143, right there between International Pop Sensation and Professional Water-Wings Tester.
And just because I know you're curious, Number 1 is Short Film Critic. Because who would want to sit through all the long boring ones? I figure the workday would be a snap!
pfff haha. sorry.
Tuesday, May 26, 2009
I love your comments, I love seeing your name, or maybe "anonymous," or maybe "anonymous" + signing your name. The combinations are endless! You should know, though, that I have been getting some spam (junk mail) comments lately, especially ads for herbal supplements. I delete these comments, but yesterday I made an error. My apologies to a reader whose suggestion was legitimate!
I'm not a blog expert by any means. I'm not exactly sure how to "subscribe" or "follow" without a Gmail account. I don't know how to post comments privately.
BUT I do know how best to reach me -- the magic of email!
So we're all on the same page. Kewl.
News: 30 min of the stationary bike, tons of stretching, sore. Bundles of back pain last night. Involuntary muscle contractions, chest pain, heart palpitations. My eyes are having trouble focusing. So yup, the usual. One day at a time.
Happy birthday to my big brother Matt!
Monday, May 25, 2009
Feel like crap. Ugh.
My bruise is now green and purple. Cool! Sorta.
You know, I never expected to be best friends with everyone. But I really wish my digestive system would reconsider our relationship. :(
What best represents the true beauty of summer? Sugar Ray on a transistor radio.
Sunday, May 24, 2009
New musculo-skeletal pain in my forearms. What the heck. I don't get it.
The good news is my dad got me a new ice pack...and it's enormous! We call it the bullet-proof vest. Helps my pain a little.
One of my favorite "So You Think You Can Dance" auditions:
gonna be back in the arts someday,
Friday, May 22, 2009
Cleared up a bunch more of my college stuff today. Do I really have that many music theory textbooks? Absurd!
American Idol is over, and I'm already hooked on "So You Think You Can Dance." Well that and pretty much anything newsy. Arts freak and borderline political junkie. The more things change, the more they stay the same?
happy memorial day weekend!
Thursday, May 21, 2009
"The Right to Fail," an essay by William K. Zinsser (1970).
Must we conform to a singular measure of success in our society? Perhaps the dropout can use a fresh perspective to define fulfullment on his own terms. "Magna Cum Laude" alone is far too narrow.
Wit, a play by Margaret Edson (1999).
My situation is certainly different than the main character's, but I can empathize with Dr. Bearing's frustrating medical encounters. Bedside-manner is so underrated!
"my dreams, my works must wait till after hell," a poem by Gwendolyn Brooks (1963).
Special thanks to my bud Aud who brought this poem to my attention. Her words are tragic but beautiful. Certain lines echo endlessly in my head. "none can tell me any word but Wait." But I'll store my dreams and keep my works as long as necessary. Someday I'll be able to pursue them again.
Thoughts? Other recommedations?
In other news, I had all that blood drawn a couple days ago, and now I have a huge blue bruise on my arm!
You shoulda seen the seen the other guy,
Wednesday, May 20, 2009
k, so, this morning I woke up...and I felt halfway decent! So I thought I'd try a few minutes on the stationary bike...and 20 minutes later, I still felt decent! Revolutionary! (Oh, I am SO full of puns.)
And then I was totally hyper for almost 2 hours! Aah! I cleaned my room a little! I unpacked a little! I carried my own laundry all the way downstairs! It kinda felt I'd been injected with 10 pots of coffee! I almost felt like my old self. Well, maybe my old self on a crazy caffeine jolt. (Plus nausea, some abdominal pain, eye dryness and oversensitivity to light and sound.)
Then the clock struck 11:15 and I crashed. Bummer. It was like the wind was knocked out of me. Spent the next 3 hours in bed with all the old symptoms. :(
A few more Dr's appt highlights:
- Neck trauma may or may not have led to POTS
- No sodium tablets or magnesium supplements for now; again, trying to add naturally in diet
- Many POTS patients find the transition into summer their worst time of year.
Best part about today: I found my collection of drawings saved from the kids I used to babysit. :D I'm so glad I labeled their priceless works of art with the original titles. One five-year-old's meticulous depiction of squares, triangles, and circles is aptly named "Definitely Not Shapes." I also like the scribble one called "The Babysitter Sleeping."
Tuesday, May 19, 2009
Totally exhausted, but I gotta get something down before I forget. Or pass out.
Dr. Gilden is very knowledgeable about POTS & autonomic dysfunction. She also said "Only time will tell" about a dozen times. Yeah. Ouch.
(HTML, you stink. Where is the bullet point button?)
- 10 vials of blood for a panel of 14 tests. man oh man. PLEASE no more fasting!
- 12 blood pressure tests. A little lower than at Mayo, but still around 100/60 standing, so not too bad. Heart-rate jumped from 79 sitting to 109 standing. Gosh dern!
- THE most awkward EKG...like, ever. =P
- Will be doing an at-home 3-day blood sugar monitor soon.
- Getting off iron supplement and potassium supplement; might be contributing to my upset stomach. Will try to replace both in my diet.
- No explanation for 3-month fever. Gah.
- Emphasis on exercise. So easy for a healthy person to say. I'm trying.
We'll see her in a week or two to discuss the test results. Might put me on Midodrine. I'm a little confused because she says I have orthostatic hypotension? I was really out of it, I don't know, whatever, we'll talk about it.
Gonna go rest now.
hospital gowns mean hospital FROWNS!
Monday, May 18, 2009
We're hoping Dr. Gilden will offer some new insight and maybe change my meds. However we also know they might not have much to suggest. We'll see how it goes. Thanks for your thoughts and prayers!
Someday I will own a chain of inspirational dry cleaners, and it shall be called...PRESS ON!
Sunday, May 17, 2009
My stomach is speaking whale. [See: mmmrrrrwaaaaaalllahhhh sadface]
I can barely tolerate crackers and applesauce. No fun. Just 36 hours til the new doc!
I'm updating our records for the big Dr appointment downtown on Tuesday.
1996, age 5, necrotizing faciitis along with chicken pox. Probably no relation to POTS.
August 2006, age 15. Possibly an episode of POTS; I developed a mysterious "virus" / circulation problem while working at an outdoor day camp. During some 100+ degree days, I became very dizzy, nauseous, and achy. They suspected dehydration and sent me home with a pack of Gatorade. I started getting frequent, painful charlie horses in my calves and feet. I had to quit my job; I could barely walk. For three weeks I suffered from these weird symptoms, which vanished a couple days before school started up again. Doctors never found an explanation for my illness. Maybe a heat-induced case of POTS?
July 2008, age 17. Fell off a swing, landed on my head. No symptoms beyond immediate headache. August - happily started school!
September '08, 10 Sept - Donated blood for the first time; bad reaction. Felt weak and nauseous for days. Probably due to low blood volume -- common in POTS patients. 9/26 - went on a student retreat to a rural area. Abdominal pain and nausea started soon after.
October '08, age 17/18. Digestive symptoms worsened, extreme fatigue set it. Suddenly needed a lot of sleep. Chest pain, palpitations, migraines became more frequent towards the end of the month. Trouble sleeping. Muscle weakness, back pain, neck pain. All medical tests at school health center came back negative.
November '08, age 18. Freaky bad everything. Tremors, short of breath. New eye and ear problems. In a lot of pain, could hardly get out of bed. Came home from school, all the tests at the Dr's came back normal. Desperate for an answer (and an explanation for my absences), diagnosed with anxiety/depression, started Paxil.
December '08, BAD reaction to Paxil. Clearly anxiety was an effect of my physical symptoms, not the cause of them. [Many POTS patients are misdiagnosed with anxiety disorders. Request a tilt-table test to rule out POTS!] Prescribed Focalin (an ADHD drug - to help boost my energy). Worst day ever - stopped Focalin. More tests returned normal. Cervical spine MRI showed four protruding discs in my neck, likely due to my fall last summer. Proceeded to receive chiropractic treatment. Tried a few chronic fatigue supplements. No improvement, officially left U of I.
January 2009. Found a more holisitc chiropractor, very promising. Sadly, his treatments didn't fix me either. While weaning off the Paxil, I fainted. Unable to begin classes at community college. Ouch. Keep on keepin' on.
February '09, met an ignorant neurologist. Saw a rheumatologist. Zillions more tests. Found everything normal, except my inflammation numbers were a little high. Put on Prednisone.
March '09. Weaned off Prednisone. Started taking Ambien. Heard about POTS. Orthostatic intolerance was confirmed, but my tilt-table test was deemed normal. My symptoms made a turn for the worse overnight, and we were lucky enough to land a cancellation at Mayo Clinic (Rochester, MN). My mom and I were there for a week, testing for everything imaginable. I was diagnosed with POTS; all else normal.
April '09. Started Beta blockers (Atenolol) and Florinef. Increased fluids and salt intake. Struggled to get adjusted. Made my blog public.
May '09. Still suffering from oodles of symptoms. Lost 15 pounds in about 2 weeks. Yikes. New doctor soon!!!!!
Saturday, May 16, 2009
Friday, May 15, 2009
Breathing, speaking, writing, singing, learning, living. That's the goal.
gotta rest. more tomorrow.
Thursday, May 14, 2009
Most people have no idea what to say to someone with POTS or another chronic illness.
My Top 3:
- How are you feeling?
- I'm thinking of you. / My heart goes out to you. / My prayers are with you. / etc
- That sucks!
My other advice: stay away from the phrase, "I know exactly how you feel." Hm, yeah. Unless you have or have had POTS, prob not so much.
Thanks for ALL your comments! Okee, back to our regularly scheduled program.
Slept SO much better last night, seeing improvement today. One thing I should mention, just for my fellow POTS patients, is that I've lost a considerable amount of weight in the last week or so. I don't think we should be worried [yet], as I had gained a lot on Prednisone most recently. I'm now about where I was when I left for school last August. Just something else to ask Dr. Gilden about on Tuesday.
Yesterday my sister had her choir concert! And I made it through 30 minutes of it! She was so terrific, lemme tell ya. "Je le Vous Diray" was flawless! I was so glad I was able to make it, even if I had to go home terribly early. Half an hour of sitting up, heart rate jumped to about 105 bpm. Super dizzy, hard to keep my eyes open. Bleh.
But Julia is awesome!
Go Cubs Go!
Wednesday, May 13, 2009
If you've been on Ambien for a couple months, don't be stupid and try going back to Advil PM for a night. Awful, awful, stupid me. Freaky tremors, super dizzy, vertigo, nauseous, and I felt like I couldn't breathe. I think I ended up getting to sleep for a couple hours. Maybe. Ugh. Stupid.
**Note: It was probably a reaction to the other medications I'm on. I don't mean to give OTC sleep aids a bad name or anything.
Monday, May 11, 2009
Spent nearly the entire day in bed again. Had a good hour or so, but once I expend my limited energy, I can hardly sit up. Music in my room is a comfort. I'm listening to John Mayer's album "Continuum" on repeat. Just hit the 40th playing in 3 days. Good thing I like this CD! :)
No one should be in this much pain. Could come in handy if I ever pursue a career as a blues lyricist.
"Pain throws your heart to the ground. /... No, it won't all go the way / it should.
But I know the heart of life is good."
Sunday, May 10, 2009
Really bad day again yesterday. :( Stayed in bed pretty much the entire day. Migraines, nausea, dizzy, heart palpitations to no end. Sitting up is a challenge. So frustrating. Just keep breathing.
no drama mama llama,
Friday, May 8, 2009
Thursday, May 7, 2009
*Brushes dust off shoulders*
Yup. All in a day's work. Special thanks to my mom...and her urgent call from the office. ;)
Doing okay today, really sore from stretching. Nausea and eyelid twitching, heart palpitations, chest pain. A gorgeous day outside, but way too much for my silly heat intolerance. Ten minutes on the porch = 2 hours in bed recovering. Not a perfect equation, but something like that.
Arrite, that's enough. One month until the Tony Awards! Enjoy this recording from the new musical "Next to Normal" - Jennifer Damiano, 16, is up for Best Featured Actress. You might recognize her voice from Spring Awakening. Gotta admit, teen angst suits her!
More clips to come,
Tuesday, May 5, 2009
Tomorrow I hope to finish packing up my college stuff to put in the basement. :( Everything's just been sitting in the hallway in boxes for a few months. Such big dreams, so short lived.
I probably sound really dramatic. Sorry. Just keeping a record for my book. ;)
Okay, funny story! Last night I dreamt that Stacy and Clinton (from "What Not to Wear") were my high school gym teachers, except class was held in my junior high dance studio(?). Anyway, I convinced them that instead of kickball we should play "Throw-Ice-Cream-at-the-Teachers." Haha, evil student minds prevail yet again!
quick before it melts,
Sunday, May 3, 2009
I love my family. But it's amazing how easily people equate "looking well" with "doing well." I'm not faulting my family specifically -- however frustrating, it is quite natural. Last night I excused myself about four times to go lie down, and, maybe I'm wrong, but I sensed surprise and even judgment in the room.
"She's well enough to come, but she can't sit for 20 minutes and have a conversation?" I imagine them thinking. "She looks fine to me."*
Doy. I may look about the same as a year ago, but lemme tell ya, I'm not the same. My body has a lot of trouble with basic processes that we take for granted. I don't function very well. Today I had a really good half-hour. I put away all my laundry and folded some socks - a big deal for me. To have 30 minutes where my symptoms are somewhat under control, this is a big deal.
It's really common for people to try to minimize my illness by saying, "Well everybody's got their good days and their bad days." Thanks for your optimism, really, but it's not like that.
My mom is emphatic. "No. She's severely limited, all day every day. She can't go to school. She can't drive. Her life has been turned upside-down! Every day is a bad day."
Might sound harsh, but it's true. POTS is my reality, and Level 3 / Grade 3 should be taken seriously. Not everyone can see or accept that. But a lot of you ARE very understanding, so thank you. :)
the ice cream truck just drove by!!
*Note: I can't read minds.
Saturday, May 2, 2009
Friday, May 1, 2009
Overall not so bad today, for my standards anyway. Eyes have been really dry and at times feel like they're crossing...that's new.
This just in: my elementary school is putting on the spring musical "I Need a Vacation" ... the very same production we did 9 years ago! Oh, the good ol' days.