It’s that time of year again. The When PatientsHeal You concert is back. Only this year we’ve moved out of the lecture hall at the BU Medical Center and we’re back at my alma mater, Boston University. In fact, we’ll be performing in the concert hall where I did my undergraduate recital lo these many years ago.
It will be much like years past, all the performers will be neurology patients of Boston Medical Center and many of them will be epileptics like me. We’ll all get to perform two pieces and probably bring the house down at the end with big sing a long with Denise at the keyboard.
There’s usually a reception afterward with tasty food and a chance to mingle with the performers and the medical staff who not only provide us with excellent care, they sometimes even perform with us. Please join us on Friday night for a great concert and a lot of fun. This is a free event. Tell your friends.
Most of you know that I stay out of warm climates whenever possible. Therefore it seems utterly insane that I left Boston today, in the middle of a snowstorm (Ursula was her name) to fly to Dallas. Intentionally. Where it was 80 degrees.
Many of the readers around here know that Geoff and I both have neurologists at Boston Medical Center. You may also remember me singing in the Boston Medical Center Concert When Patients Heal You last November. (Video is here, sorry for the sound quality) I’ll be singing in the concert again this October. Watch this space for more details.
Anyway, the BMC is loaded with great talent and with people who give their time and talent to not only give back to the community here in Boston but also but to raise money for others who need it, as well as to fund health care for those who would not otherwise have access to it. I’m not performing in the concert listed below, the pianist/nurse/saint I’m performing with in October is. Check it out.
Yes this Friday night! I’m singing in a FREE concert at the BU Medical Center. There will be a reception afterward, and fun will be had by all.
So, one more time:
WHEN: THIS Friday, November 21st, 7:00pm WHERE: 72 Concord St. Evans Building, 1st Floor, Keefer Auditorium, Boston University School of Medicine WHAT: A concert a many types of music put on by patients, doctors, staff, and friends of the Neurology Department at Boston Medical Center, see also: FOOD HOW MUCH: FREE
I came across this on Boston.com this afternoon. I’m not one to generally put much faith in medical studies because one is generally the exact opposite of the next one to come down the pike. This one, however hits home for me.
First of all, a HUGE thank you to everyone who emailed, called, sent flowers, and kept me entertained while I was incarcerated in the hospital. It is such a huge relief to be able to do things like shower and comb my hair again. Also, sleeping in my own bed is really, really nice. While my hospital bed wasn’t particularly bad, it just wasn’t mine.
For those of you who might be thinking about getting 29 electrodes superglued to your head on a lark, know this. I have had to treat my hair with baby oil and wash it 3 times and I am STILL pulling glue out of it. There have been times when Geoff, God bless him, has reached over and pulled a flake of glue out that I couldn’t see, just like the apes on National Geographic groom one another. That’s love, I tell you. The bonus? The glue looks a LOT like dandruff. Awesome. Thankfully, everyone in choir at church this morning was very understanding when I explained that I did not, in fact, have snow and/or dandruff in my hair.
In other news, I didn’t get either job that I interviewed for at Major Local Music School, however each person that I interviewed with did tell me that they wanted to encourage me to apply for other positions within the school. This is good, I think. So I will do that, and I will mention that I have met with both of them and see where that gets me. I REALLY want to work there. Please keep your fingers crossed for me.
Also, keep your eyes peeled here. We’re going to be adding a blogroll to the side of the page. There were so many fantastic suggestions emailed to me of stuff to read that we’re going to keep track of it in one place so that you all can share in the hilarity.
I just spoke with my neurologist and they’re going to let me go this afternoon. The preliminary results are that I didn’t have any outright seizures but that I had a scattering of Sharp Wave* activity. I have an appointment to follow up with her the week after next and she’ll have the final results then. There is a lot of data to process, so it takes a while to go over everything (EEG, Video, Audio, reports from the staff, etc.) I should know if there is any definitive diagnosis when I see her next, but for the moment I get to go home. They’re going to come and unhook me in a little while and then I can take a shower, wash my hair, and Geoff can come and get me.
*Sharp Waves: On an EEG, sharp waves are deviations from a normal brain wave activity and are distinguished by more sharply contoured waveforms of varying amplitude, or voltage. The duration of each sharp wave is 70 to 200 milliseconds. Spike waves, sharp waves, or distinct patterns of spike and sharp waves or spike and slow waves may be indicative of seizure activity.
This morning as I was in the hours between taking my morning meds and finally dropping off to sleep (total time awake almost 24 hours) a nice old man with a Southie accent arrived and delivered my flowers! Very exciting. They are from my Mom, Dad, Brother, and Sister. 😀
Sorry for the crappy cell photography. I tried to make up for it with artistic sounding titles. /CheTONGUEek
I suppose this is technically more like an extension of Day 3. My neuro came and visited me yesterday afternoon and basically said that my brain hasn’t been misbehaving in the expected ways. So, last night was sleep deprivation night. I woke up at 9:00am yesterday, napped off and on till noon, and then was up till, well, now. The goal is to provoke my brain to misbehave so we can catch it on film and then know what is really going on. I’ve had people wishing me “happy seizing” all night long.
I had no trouble staying awake and it’s only now, when my asthma has started acting up, that I’m starting to feel tired. I have breakfast and an asthma treatment to look forward to sometime in the next hour, and then I can probably sleep and hope that my brain short circuits in the appropriate way. By the way, the thing that triggered my asthma? The perfume of the lady that took my vital signs at 5:00something AM.
It’s raining and gross outside. Hopefully it’s a really good day for a nap and a seizure as well.
Well, apparently my brain is not performing as desired. (This is news?) I keep setting off alarms while awake and feeling more or less fine, but have only set off one alarm, that I remember, while asleep. I slept fitfully last night, though I did manage to make it to REM sleep. I had a dream in which the founder of the company that laid me off showed up. I have no earthly idea why, but he was there.
I slept a good portion of the day today. For some reason I was really tired. I know it’s noisy here and that I can’t sleep more than 4 hours at a shot, but I was just really groggy all this morning. One of the residents came in to see me and I know I talked to him but I don’t remember what I said. I think he’s coming back later, so I should find out.
Since you all have been so fantastic about sending me stuff, I thought I’d post it here. A photo of my helmet.
I took this:
last night when my new night nurse came on duty. She was highly amused by the fact that I took a photo of it and actually seemed to warm to me quite a bit. I was listening to MP4s sent to me by a friend from choir when she came in and when she found out I was singing in them she was very impressed and asked me all about them. I like her, I hope she comes back tonight.
Yesterday’s promised passel of med students never appeared, unless they snuck in while I was napping. I managed to get through the day yesterday without 1 full neuro exam, which is both frightening and amazing. I haven’t had one yet today either.
If you have a moment, send Geoff an email. He’s home with a vicious head cold and he’s losing his voice. He can’t come visit me till his fever goes down and he can’t really communicate via phone, so we’re texting and emailing.
I think that’s it for now. If something interesting happens, other than the constant beeping and groaning of machines, I’ll post it here.