About this Blog

~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again

Tuesday, January 30, 2007

Low Temp

anyone ever get a low temperature when they feel ill? well i do, but i dont know if its all the time or what but my temp falls to about 95.0 when i wake after sleeping for some time and rises a bit to 97.0

Thursday, January 25, 2007

no spoons no job

Linz wrote:
Today for instance, I thought I'd be having a good spoon day as I got to bed earlier than usual but I woke up with LESS spoons than normal so I had to reschedule activities and chores.


OMG i have those days ALLL the time! aaaah they are sooo frustrating. especially if you work and they bug you about letting them know ahead of time if you'll be out or something. ha, yeah like that can happen so practically for us with this problem...haha thank God my mom is paying me to help her homeschool my lil sis and bro cuz she can cuz me breaks (she has fibro also)

Tuesday, January 23, 2007

Dr Apointment

i have a doctor appointment with Dr. Stuart L. Silverman on Feb 1st, whose the Medical Director of the Fibromyalgia Rehabilitation Program at Cedars Sinai. yay!

Monday, January 22, 2007

Introduction to Message Board

hi, ive been posting here and there randomly since last august when i was at my witts end.

anyways heres my story:

past:
in high school i had severe family problems, stress, irregular menstruation, migraines, depression, and suicidal tendencies. which doesnt help the diagnostics...
anyways while in high school i went to a psychiatrist who put me on a bagillion things including lithium, deoakote, buspar, ritalin, and other things like anti depressents and such. and because i went to juvenall hall i had my hep shots 3 times. i dont know what dammage all that did to me.
my mom also has fibro, ibs, and acid reflux. one grandma had lymphoma, and another grandma has diabetes.

last year:
in dec of 2005 i started working with preschoolers in LAUSD schools. i felt nausious and had back pain and in the winter break i had gotten a flu or cold and had lung and ear infections. at this point it wasnt bad just threw me off course a little. what did bug me was i was experiencing some reactive hypoglycemic symptoms.
later months some mornings i would wake up and just not be able to go to work cuz i felt like i was comming down with something.
went to an allergist and a few months later started allergy shots. great! i thought i was better.

last summer:
i took the subway to the other side of LA to visit someone and i started feeling like my nose was stuffy and if i didnt get it out i would get a headache. at night the back of my eyes would hurt and i was feeling woozy. i went to the ER because it lasted for a week and a half. they gave me some vicadin, took a CT and sent me home. the next day I started summer school like 45 min from my house and i was doped up feeling horrible. MY GP specializes in migraines (but doesnt believe in fibro or CSF) told me i had bad migraine attack and gave me prednisone for 7 days. my symptoms cleared, i felt alive, awake, and realized that i also had vertigo, nausia, and other stuff. well the prednisone wore off. i woke up one day with a stiff neck and a headache and got a massage and felt a little better. but i could barely drive because i was out of it. i got in a minor bumper to bumper going off the freeway cuz of my cognitive delay.
one day i was having hypoglycemic issues again and my arms felt like heat was comming off them and my mouth and fingers felt tingly. that night my right foot felt as if it was swelling but it wasnt, but i couldnt sleep so i put ice on it anyways. some days i would have strong cravings for iced tea, plain hamburgers, pickles, or chocolate frozen yogurt or i would feel as if i'm lacking what that thing has in my body.

regular school started and one morning on my way to school taking the bus i had to go home because i was so nausious i felt like fainting. another day i did faint, i felt like i was comming down with the flu but it never came. i had to have someone come pick me up.

later, at nights i would sleep spells and fall asleep randomly (i thought it was narcolepsy but now i dont know). then it would start with burning in my shoulders and wouldnt want to move my upper body cuz it would make me feel like i would pass out.

i have really watched my triggers for migraines and have been eating so that i dont get hypoglycemic issues and eating things that i'm craving so i dont have other weird symptoms.

but i still have foggyness, i'm out of it i feel alot of the time, neck muscle pain thats spreading (i dont feel it all the time). exercize makes it worse

i was taking celexa for a couple months and it helped alot but the side effects were bad so i stopped. soda gives me heart flutter feeling.

today i couldnt wake up in time (usual thing, it takes me a long time to ever hit that "i feel awake" feeling) and so ididnt eat breakfast. i went to this meeting at my church and ate a doughnut (bad move) nd the lady was singing on the top of her lungs and we had to stand cuz everyone was standing and iwas in the front and we were standing for 30 minutes and i felt awful!
around 11 i ate a burrito and my husband and i went somewhere and i crashed on the bed at that place like it was so horrible. it was like i was in deep sleep and couldnt wake up even if i tried! even now it feels like i'm sick (flu sick) but not. aaaahhhh.

well i see a new doctor at Cedar Sinai hospital next week that was recommended by someone.

-Courtney

PS: i'm not sure if any of this makes sense. i'm kinda out of it now and it took me a while to remember what i was typing at times. i've been laying down all day my upper body and head hurts. and to think i had 2 good days and its all over! again.

bad thinking

i find that several blocks before i have to turn somewhere while driving i have to keep repeating to myself "turn right turn right turn right" otherwise i'll just forget. its awful and i'm only 21. i think its silly when i'm with someone and i dont know where i parked. i'm so used to it now like "well everyone is like that" haha

Monday, January 15, 2007

doing stuff!

Dog/Cat Mom wrote:
"Re. losing weight on Prednisone: me, too. It made me so jittery (60 mg) that I didn't think about food, just about doing--well, whatever I needed to do: comb the dogs, wash the dogs, comb the cats, clean the house, vacuum my car, cut out/assemble quilts, work outside in the yard (but only w/long sleeves & hat), etc.

Because, on that high a dosage, my joint pain went away (I was being treated for poison oak YUCK) and I could DO things! So I DID them! This was obviously a form of exercise and I wasn't eating so, for those weeks, I did lose weight.

Thank God.

DCM"


i just read this and though "wow i wish i could do all that with no pain." this summer i took prednisone for about 10 days and i felt amazing! no pain. i was getting treated for a severe case of migraines. i wish i could feel that way again. i asked about the meds but my doc said it was addictive and has a lot of side effects.

not officially diagnosed...

since i'm not officially diagnosed i go through this thing where i want to be diagnosed then i go through denial and depression anger and then back again! its weird that we want this diagnosis isnt it? but yeah, i dont want to feel like i'm crazy.

tingling sensations

it happens after i cross mylegs. when i go to sleep i have to move around alot so that my legs or arms dont fall asleep.
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