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

Monday, April 30, 2007

my leg hurts

so i've been feeling much better the last two days. i've managed to clean my living room and kitchen and fold all the clothes from like 6 loads of laundrey. But the heat was wiping me out today. and tonight i got depressed. i guess the pain makes me realize whats important because all i was focused on was how i want to be pretty and not all gross and stuff. I put on makeup and did my hair, changed my shirt all to go get groceries. lame i know. i went to 3 different stores (cuz thats what i do) and my right leg was cramping up so bad. it still hurts. i got depressed right after i realized that i had small groups tonight and it was just too much to figure out how to get my friend to give me a ride after i drop the car off at mikes work so he could get home without me. I guess i'm not ready for all that thinking and rushing to get stuff done and do things. I used to do it so well. I used to go to school full time, hold a part time job, volunteer in two ministries at church, and maintain a social life. where have those days gone. I got pretty sad tonight. But I bought myself yellow tulips which are making me quite happy. and they go well in my blue and white libing room. :-)

Sunday, April 29, 2007


i never knew what it meant to have weakness or if i experienced it. i knew i FELT weak but to have weakness in a part of your body... well now i feel it. In both of my legs. i can only stand up for so before i will collapse.

i'm soo tired!

i'm sooo tired. after 10 hours at least of dead sleep where you would think i would wake up refreshed, i wake up tired. and i'm not depressed because michael does the greatest things and makes me smile :-) but i'm so tired, like not the excrustiating tired i used to feel where i would fall to the ground and pass out tired but just like i want to go to sleep all day long! aaaaaaah.

Saturday, April 28, 2007

too ticklish and too tired

so i'm way too tired today. like normal tired when you just feel tired, not the exhausted depeleted tired like i usually feel. i was just tired but it extended to all day. i want to sleep. i've barely eaten the last two days. but i'm not in all that much pain today. a tiny bit but barely. but i'm weak, like the last day of the flu feeling when you need that extra day to rest otherwise you'll get sick again feeling.

on top of that michael barely touches me and i laugh hysterically cuz i'm ticklish. he touches my stomache or my let or my ear! and i'm laughing! poor man.

i looked it up and youre ticklish because your sensitive or its a defense mechanism, so maybe i'm just defending my already wacked up body even though i dont feel pain.

ps: my knee pain is all gone!

Friday, April 27, 2007

so i've been playing with my dog...

ive been using red clover and hyssop extract on my hands feet and scalp to help me fall asleep along with my heat pack on my back. it soothes me.

i started up my antidepressants again at least until my next apt so i can get one thats not as hard on the stomach.

i can only do one major outing a day, one minor outing and 1 small jobs or 2 minor outings, 1 big job and 1 small job, or 5-7 small jobs.

major outing = taking car to mechanic, getting groceries
minor outing = bank, going to my mothers
big job = dishes
small job = art drawing, phone call

ive been getting migraines every day but today i got me some HEADON great stuff!!
i barely ate today.

i'm getting that feeling again that i eat lunch and i feel like total crap afterwards. i wonder why.

Wednesday, April 25, 2007

no sleep

well i still cant get to sleep. i think its because on monday i had a migraine and i slept from 10 till 9. thats like 11 hours! and i still woke up with a bit of my migraine left.

aaah damnit!

now i have knee pain! I'm so tired of this! and tonight i was trying to explain that all I could do in a day was 5 things. I am limited to a small number of things i can accomplish which includes: washing dishes, making a phone call, walking, drawing, writing an email, paying bills online, grocery shopping counts as like a whole days worth and so does going to school to meet with a teacher/counselor/staff member etc. and a lady (which i dearly love) just didnt understand it! ugh! and i had a hard time explaining it because my brain is just swirling in circles and i cant keep a straight line of thought! anyways i wish it was all over.

Monday, April 23, 2007

theres always something

now i'm getting that pressure in my head that i got last summer which turns into a migraine. this is like my 3rd day i think with this. theres always something with this stupid illness!

anyways, my doc said to see my allergist and continue getting my shots. and he told me to take nasonex for the ear thing. I forgot to post that last time.

Friday, April 20, 2007

doggy doggy bartonella

so i got a note from my doctor saying that my pet dog is needed for my health. so we get to keep our dog Eyago! yay!.

and he ordered the right test this time. well at least the labs ordered the right one this time. so we'll see. all my tests from last time were good. so the more normal tests i get the more accurate my lyme dx is.

Thursday, April 19, 2007

hurting ears/nausiated

so I've been depressed lately and cant seem to kick it! Mike took me to dinner and it was loud in there and my ears started hurting. like deep inside. i ate and i felt nauseous! and when i covered my ears i heard everyone talking clearer. Its like things close to me were muffled and i heard too much of everything else. Well i went home and now I'm all out of it. I feel like I'm retarded or something, like I'm acting that way cuz its hard for me to think straight. i don't know. i hate this. and it definitely affects mike and my relationship.

Tuesday, April 17, 2007

ugh depressed

i've been feeling better but as soon as i get out for a little bit my neck starts cramping up alot! i have to take a heat pack with me and take half a vicadin for pain. So today i was like Okay i'm going to class maybe? and as i was waking up i decided i liked my bed and sleeping much better :-)

i liked it all the way till 11:30 :-( I really dont want to do much today. but i'm cleaning a little. Maybe i should just take it easy and not be so hard on myself. this doesnt necessarily mean that i'm lazy or once i'm well i wont do stuff. okay i'm encouraging myself as i type this. thats good!

Monday, April 16, 2007


has anyone had any luck with applying for SSI? I've noticed I cant work and i cant go to school now, i can barely go out and do an errand without feeling horrible.

Sunday, April 15, 2007

feeling better

So I'm definitely feeling better. I drove an hour today to go to a restaurant with two of my friends. We laughed till we cried. But I'm wiping myself out a bit. I vacuumed and put stuff away. My apartment is definitely not where I want it to be but I've made ALOT of progress. And I played with my dog, Eyago. He makes me happy and I believe is a definite part of my treatment. :-)

Friday, April 13, 2007


can anyone explain this to me:
have you had one?
how long do they last?
When do they happen in relation to treatment?

pain agony go away...come again another day

drove the 45 minute drive by my weak self to see my doctor today. He changed my meds back to zithromax 250 1x a day. he wants to wait a week for me to do 500mg a day and go from there. Well i waited to take my clarithromycin until I got to the office in fear of something happening while driving. So I drove to McDonald's and got me some food. Then I felt really bad so I had a #3 in the bathroom. Drove a bit and realized while going barely 20mph that i was going to crash on the freeway home. I called my mom and begged her to pick up Michael at 3:30 and drive out there to get me. When I tried to eat my food I wanted to throw up! Mostly I felt that with my Mr.Pibb which is weird. I slept, agonized, etc. I felt so bad. When I woke an hour later I started to feel better. Slowly I was able to drive home. I did. So now I'm wondering if I had a Herx reaction, which would be a good thing.

anyways, on the breast pain: The doc said I had fibrocystic breasts which is common but I should check them everyday so I can notice a change right away.

lungs crushing

i got 2 hours of disturbed sleep. I feel like my lungs are crushing in my neck where my lymph nodes feel sore and slightly stiff as if inflamed or something and my bumps are still here. i hope this is just anxiety!


decided to check out my body for signs of more bumps.
they are on my arms/back but not chest or stomache. and they itch slightly
i also noticed that my legs have small subtle bruises on them all over.

this disease is SOOOOO anoying!!!!!!!!!!!!


the only thing I've really been able to do lately is watch TV and other passive things. I've been worse but its not agonizing. i am basically bed ridden but i only felt really bad for about an hour today. my pain is minimal and my stomach feels funny. if i get up to do anything i get achy light headed and weak. my temperature is staying around 96.5. We've had to deal with some past due tickets which have cost us 2000 that we are still figuring out but I definitely think a testing at Igenex will do me good. Most of my teachers are willing to work with me which is nice.

I never thought i would be so weak and ill but not feel agonized. I always had the two come hand in hand. I'm NOT on the verge of killing myself. ha ha despite my being bed ridden and all cuz I'm feeling Okay.

the bumps on my arms have been coming and going.
took another pregnancy test and its negative.yay!
and my left breast still has pain.

Tuesday, April 10, 2007

geez another symptom

still incapacitated...or whatever. i have little lumps in both of my arms (could be a rash) doesnt itch though. and my left breast hurts with light pressure, still. I thought it would go away but I guess i should put everything down here,

other possible diseases i could have

Meningococcal disease
Relapsing Fever
African trypanosomiasis
Sandfly Fever

My diagnosis...

Went to my appointment today and saw the disability documentation sent from my doctor:

My doc: Specialization-Internal
How often sees patient: every 2 weeks
diagnosis: 780.79, 784.9, 088.81
disability considered : progressive

Here is the def. of the dx codes according to http://www.icd9data.com/2007/Volume1/default.htm:

ICD-9-CM Diagnosis 780.79
Other malaise and fatigue

* Clinical sign or symptom manifested as debility, or lack or loss of strength and energy.
* Exhaustion that interferes with physical and mental activities.
* Fatigue is that state, following a period of mental or bodily activity, characterized by a lessened capacity for work and reduced efficiency of accomplishment, usually accompanied by a feeling of weariness, sleepiness, or irritability. (On-line Medical Dictionary)
* The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli.
* Weakness; lack of energy and strength.

* 780.79 is a specific code that can be used to specify a diagnosis
* 780.79 contains 31 index entries

ICD-9-CM Diagnosis 784.9
Other symptoms involving head and neck

* Abnormal breathing through the mouth, usually associated with obstructive disorders of the nasal passages.
* An offensive, foul breath odor resulting from a variety of causes such as poor oral hygiene, dental or oral infections, or the ingestion of certain foods.
* The sudden, forceful, involuntary expulsion of air from the NOSE and MOUTH caused by irritation to the MUCOUS MEMBRANES of the upper RESPIRATORY TRACT.

* 784.9 is a non-specific code that cannot be used to specify a diagnosis

ICD-9-CM Diagnosis 088.81
Lyme disease

* A deep type of gyrate erythema that follows a bite by an ixodid tick; it is a stage-1 manifestation of LYME DISEASE. The site of the bite is characterized by a red papule that expands peripherally as a nonscaling, palpable band that clears centrally. This condition is often associated with systemic symptoms such as chills, fever, headache, malaise, nausea, vomiting, fatigue, backache, and stiff neck.
* An infectious disease caused by a spirochete, BORRELIA BURGDORFERI, which is transmitted chiefly by Ixodes dammini (see IXODES) and pacificus ticks in the United States and Ixodes ricinis (see IXODES) in Europe. It is a disease with early and late cutaneous manifestations plus involvement of the nervous system, heart, eye, and joints in variable combinations. The disease was formerly known as Lyme arthritis and first discovered at Old Lyme, Connecticut.

* 088.81 is a specific code that can be used to specify a diagnosis
* 088.81 contains 5 index entries

Monday, April 09, 2007


So I went to the doctor today and he changed my meds to clarithromycin. and i got a test for Bartonella. He says the red spots all over my body indicate that.

It adds up with the lumps i used to get that got to be the size of golf balls!

anyways i'm just glad i get an interview with the disabilities office at my school.

Sunday, April 08, 2007

getting worse

i have a really stiff neck. barely can move it and pins and needles all through my spine and bones, my right arm keeps falling asleep also.


anyone get this? got it all over my body., Dont know if its related to 1)a nasty sunburn i got in Mazatlan or 2)not taking my antibiotics for a couple of days

Rash still here.

my neck is cramping up. i felt like crap today and finally got two weeks of medicine for just about 50 bucks. geez. the rash isnt gone. Here is my list of possible dx:
Meningococcal disease
Relapsing Fever

who knows what i have. hopefully i get better. at least this summer i wont be doing anything.

another thing i worry about is being pregnant. I just have this feeling that I am even though i've taken 2 tests and both said negative. so i'll force myself to wait a week to take another one. But I actually dont want to deal with that right now. I just want to get better. As it is we cant even get our tiny apartment in order.

At least my sunburn has turned into a nice tan thanks to the maker of Aloe Vera!

Saturday, April 07, 2007


So I'm really itchy all over, found petechiae all over my body. I havent taken my medicine for two days now because I dont have the money and i run out. But I found some prescription assistance programs so it wont be so bad. But the petechie worries me and i'm bruising more.

Friday, April 06, 2007

medical bills

ugh! i just found out that my insurance doesnt cover prescriptions! And this whole time I thought it did and that I just had to pay up front and submit a claim and I would get reimbursed! we dont have that kind of money...

Sunday, April 01, 2007

mexican sunburn

so i went to mexico this past week and used sunscreen every day except yesterday. now i have a nasty burn all over my body! bright red. chills and a weird achy feeling. not to mention i was EXTRA anxious on the plane ride home today. i couldnt shake it. anyways, even mike said i should see a doc about it. he never says that.
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