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

Wednesday, November 26, 2008

think i should update? :-)

so yeah im not pregnant. it turns out my monthly was coming and i ran out of my antidepressants so i had a withrdawl. duh! anyways, i worked 6 1/2 hours and marie callenders today and will probably tomorrow. yay! thats the best! woo hoo.

Tuesday, November 11, 2008

lethargic update

I havent updated in a long time because Ive been doing really well. The last 2 weeks i had alot of headaches because of stress, but they are not debilitating which is key. Thats gone but now its replaced with mild/moderate fatigue in the afternoons. Now the last few days Ive been depressed too. Last night I got a migraine. so im hoping I'm pregnant. which is what I hoped before my surgery too because that means my body is normal and I only have to deal with this craziness for a little while. If Im not pregnant then I'm so frustrated because my antidepressants arent working and I have to find the source of my problems. Ugh!

Other than that Ive been doing pretty great. Again not 100% but there are so many instances where I remember the same situation being in agony like climbing stairs.

Wednesday, October 08, 2008

scar 43 days post op

i'm kinda concerned about my scar. I keep picking at it near the top but I pick it so much that clear ooze comes out. So I need to keep a hands off policy. That area has always been a little red and looked different than the rest of the scar anyways.

Tuesday, September 30, 2008

migraine...went away :-)

Yesterday I did so much. Probably too much. I woke up early to take M to work, went to the bank, stopped to get a burrito, took my car to the shop, took two buses to school, walked a block to my class, walked two flights of stairs to my second class, ate the rest of my food, walked a block to the bus, took two buses to get my car and finally got to M a 5pm. And i only started to feel body aches at the end.

Today I stayed home but mostly felt good. I took my brother and sister to the store and to KFC but my head started hurting. I got home and had to sleep on ice, i had a migraine. I got up a few hours later and ate a little food. My migraine is still there but I still feel pretty good.

This is amazing. I can totally handle this. Every time I get a headache I fear a CSF leak or another complication, but I do better every time. I feel normal. Also the last few nights I have wanted to sleep around 9:30 10pm but M wants to stay up, and we are trying to find a place to live and I feel its on my shoulders even when he says he will do it, he doesn't. So a little stress and inadequate sleep, plus having surgery a little over a month ago...equals a migraine i suppose.

Sunday, September 28, 2008


feeling better every day! :-)
good posture feels better than bad posture. I'm happy and energetic. I can last 4 hours now and rest a bit to go on a little more.

Tuesday, September 23, 2008

update physical therapy

I forgot to mention in my pros and cons post that I used to gag alot and feel like i was going to throw up. not anymore :-)

physical therapy is going well. About 4 more weeks. The therapist said in a few weeks I can go swimming at the Y again. yay!

I saw the doctor at school yesterday. I told him about my hypermobility and he took me seriously! He was actually shocked that the doctors didn't pick up on my chiari right away. Well he used to be an orthopedic surgeon. He said this is something I have to live with and that surgery and physical therapy doesn't really help. But he will add the physical therapy to my prescription for my joints. He said I wasnt too bad. My elbows wrists and fingers along with my shoulders are the bad areas. But my knees and ankles are pretty good. But I do have flat feet. I asked him what to do about it and he said that he has flat feet too and you have to learn tricks to walk properly and avoid the pain. Pretty much what I am doing already. So, yay.

I guess that was a confirmation of diagnosis right?

I took my tramadol the other night and had a rebound yesterday. I was in alot of pain. I felt nauseous all day and sick. So no more tramadol.

Sunday, September 21, 2008

sleeping well

So I havent had that "disappointed" feeling at night for a while now. Ive been sleeping well. Waking up refreshed. My joint pain is pretty bad but today I bought two ankle supports and it works so well. my knees dont hurt bad like before when i dont have them on. I can walk longer with them on. I will get wrist supports soon because i notice how painful they are. Hopefully I can fully function with these things and I can exercise to a point where my muscles hold up my joints. I have more motivation to exercise now. And my biggest goal is to dance and I think with all my limitations I will be a very graceful dancer out of necessity.

Ive been noticing more and more how I put pressure on my joints on a day to day basis. Like holding up a book or my laptop or going up stairs or even resting or driving a car. So I'm trying to relieve the pressure as best as I can.

I plan to get massages at my school. They are cheap. I want to get them maybe once a week now that Im not going to therapy. :-) And hopefully that will help with the muscle tension because I know my muscles work overtime holding up my joints.

As long as I can manage my pain and I can do basic things and I can exercise I know that I will have a happy and fulfilling life. And that is honest to God my main prayer. Out of the depths of my soul I cry for this. To be happy and fulfilled. And the tug at my heart says I don't deserve it but I know thats the addicted personality that stems from my chaotic family.

I'm taking Abnormal Psychology this semester and I am feeling so normal. Contrary to what I've always believed about myself deep down. My mom has a tendency to look for the unnormal in others.She did it to me and to my cousin, and now to my little sister. People may have a tendency to one kind of problem but it doesn't mean they have that problem. They should call it Mental Health more often than Mental Illness because everyone needs to be aware of their health. Just like I can have a tendency towards Diabetes because my aunt and my grandma both have it but it doesn't mean that I suffer with it.

Saturday, September 20, 2008


As usual i try another thing to help my condition and I'm still in pain. I have a headache on the verge of a migraine. my joints all hurt. aggrivated by walking It's like my joints either sink in or pop out. (Oh i figured out my spacing thing by the way.) Rest helps it because i'm resting my joints. ugh. this is so annoying. i dont even know if the surgery helped. so far it has helped little but will it be significant enough? Or am I still in the middle of my search for an answer. And in he meantime I can't get SSI because I dont have a doctor to verify my pain. To them they did their job and I just must be complaining. Its cuz they dont understand. And I need a diagnosis but once I get one the doctors usually believe they can help me so I wont need it. In the meantime I have been unable to take care of myself for 2 and a half years.

Sunday, September 14, 2008

pros and cons

tylonal helps pain
dont have to put my head forward just to get through the day
feel good when standing up and walking around
majority of the day i feel good (not like before where the majority of the day i had pain)
sinus headaches mostly when lying down
blood temp is usually 99.2
feel like i'm going to fall over about once to twice a day

Tuesday, September 09, 2008

finding the right therapist

its so hard to keep a therapist it seems.
i had a great therapist , though it seemed as if i wasnt growing any i felt supported in a lot of ways, and she worked with alot of people with health conditions,but she wasn't flexible in her scheduling. i could only afford to go every other week but she couldnt do it, and when i lost my insurance and then got it again, i called and it took her a while to actually tell me she was too booked. so searched for another. the thing i liked about her was there wasnt alot of pressure. i felt safe if i made a mistake. i just didnt like it when she eyed the clock. i get why but its just annoying.

the next therapist i was seeing was great, worked with anxiety disorders and ptsd. the first 3-4 weeks were great. but the last time i saw her i was late and i felt really uncomfortable as if she was frustrated with me. i found she was guiding my thoughts too much at times. i decided to forgive her for just being a normal person, she had a bad day or something, its understandable. I was excited to show her my progress when i returned next week. But I find I got a phone call about a bounced check (yes i bounced a check) but that i also had a 50 dollar fee for the bounced check. i didnt know anything about these kind of fees in the beginning. i feel like i become vulnerable with a therapist, she should set ground rules in the begining not get frustrated afterwards. ti just hurts.

so now i'm off to find a new therapist, i need to make a list of things i need in a therapist and interview them before i accept. im not AS needy of one now as I was before. i just hate starting over from the beginning. so annoying

My FAVORITE therapist of all time was when I was living in a group home during high school. He was awesome. I felt he understood the misunderstood and thats what i want. he really helped me alot. thats why when he left and i changed homes i crashed quickly. But the things i learned from that home i will always take with me and i believe have made me a better person.

This is where the crazy comes in...

I don't like to talk about this stuff because it makes me feel like less of a person. This is why there is an OR between my sick and my crazy. If I have any psychological issue i jump to the conclusion in my head that I must be crazy and its ALL in my head.

Anyways, I must post this, if anything its because it bothers me so much that I need to figure out why I'm feeling like this and solve my problem.

Its like a flash of lightening. It occurred right after I thought about living another night with a fever or waking up with excess snot, wanting to throw up in the morning because of it. (Seriously, its disgusting I hate it)

Its like panic, a flash, nothing, fear, then i think if I die right now I wont call out to God and I dont have any control over it. I feel crummy. (PS I’m not really sure why my computer does this spacing thing randomly. can anyone help me out?)

All I want is comfort foods. Like hot chocolate or chocolate chip muffin. I can't just go get it. (Because I can't drive to the store on my own and its four in the morning) I feel dry kinda, crummy. And this is where I think a physical component comes in. Maybe it's low blood sugar? or is it some type of adjustment disorder? I mean i feel physically crummy. I feel more distressed about the episode and worried it will happen again. I mean it's kinda out of the ordinary, different than my usual personality but it has occurred more times than not.

I'm not realy sure, at this moment i'm hoping someone with the answer will happen upon my blog and let me know but I think I will have to search it out like every other problem I have. (Which is normal in the health issues world)

PS: I know I am supposed to be blogging for Invisible Illness week and this is totally agianst the ”rules” for blogging. I will be posting on friendship during illness in a later post. 

Sunday, September 07, 2008

fever headaches

turns out my headache was a fever headache. i threw up. tylonal did the trick to reduce my fever but i have to take it every few hours to keep it down. i did call my doctor that was on call but because the scar looks fine then i'm probably okay. sucks. now i can feel it when my fever goes up again because of those darn headache pains. uggh.

migraine wont let up

this is tough because the only time it does is if i'm sitting up with my head forward putting absolutely no pressure on my neck muscles. laying down starts the throbbing. I went to the bathroom naked (as i did when i was in high school) to lay on the cool tiles and be prepared to throw up. the cool tiles usually help. well there are no cool tiles here but a cool tub which did help. Im not sure what to do about this migraine. i dont know whats triggering it so I dont know how to get rid of it. I'm taking tramadol for my pain and i'm putting ice and cool packs on my forehead as well as taking some herbal stuff for migraines. help! what to do?

Friday, September 05, 2008


the never ending migraine.

Wednesday, September 03, 2008

feeling better slightly

so i rested all day but was hurting alot. my allergies are kicking it alot too. So i'm taking guafisin (zyrtec) and i just got a nasal spray from the drug store to help. i got some cool patches for my head and i have an ice wrap thingy on my back. I changed my prescription to Ultram from Vicodin and/or Percocet (which are the top two meds that cause hallucinations and crazy dreams). I'm feeling drowsy and i have a good possibility i will sleep okay tonight.

I have some great people supporting me. Some possible visitors, yay! I wont be bored all the time. Its hard when I'm spending time with my little sis and bro and i know later i will just be thinking about the pain because its so prominent. TV is just too boring right now and theres only so much you can do online.

Chiari Yahoo support groups have been so great. I had alot of responses to an email post about how I was feeling last night and they all have been helpful. Plus my friend D is really helpful. I called her last night and she was suprised I had any energy at all (probably all the coffee)

The doctors office lady, is really nice, always willing to let me share how i'm feeling, ask questions, change meds if i need to. so patient. its always good to be able to have staff like that. It makes so much a difference because its those people you will be working with mostly.

PS the tylonal extra strength is like baby stuff to me. It barely breaks the pain with 4 tablets and i have to keep popping them. not fun! ULTRAM it is.

My dream details....

In Response to : Vicodin Dreams

yup the vidocin dreams. I'm having them. they suck!

i was at a pool party with some friends and in a bikini and we were looking at each other like geez i thought we were going to the beach so we looked all cute but instead we were with other people for some reason should have been more covered up. We were ready to go home and i needed a ride. we walked outside on this brick path going down a hill and someone said they would bring me back up to my car that was about to get locked in the gate. I was afraid because they were locking the gate and i would get stuck inside. So instead of taking my car we took his car.it was a cool bike looking thing. but it was more like a bus. we actually rode in the back of the bus on the way to the party but this time i was riding in the way back (with the top down) and he was doing wheelie all the way. So when he was taking me back to my car (now we are in a school for some reason) i kept asking to be put in the back instead because i was about to hit stuff. I was yelling and screaming at him and i was terrified. I was hitting stuff and almost falling out. Hitting the door frames ceilings (apparently they were over sized door frames). I fell off and was trying to get out of the school when the gym teacher was walking towards me. the room kinda closed in. he was hovering over me and i would spot an open door or an open wall or something but they were all closing and shutting. and the gym teacher was about to rape me when i woke up hyperventilating.
Talk about freaky.

Yesterday it started with a dream where I thought my parents were yelling about the cat but i was really uncomfortable and sad about it. It felt so real to me i thought it was real when i woke up. then the next dream was about me in this jumping room from the future and a young friend of mine kept jumping on me and i was yelling at her to stop but she wouldn't listen (no boundaries that girl). So i got really mad at her then she was hurt and mad at me. She didn't understand i didn't like the jumping room. My stepfather said that i was being dumb and should just do what everyone was doing and enjoy it. then my uncle(which was a combo uncle of two of them in one) said "she just needs to rough up a bit" so he took out his lazor glasses and beamed me in the eyes. These glasses were from the future and they could change your personality. I didn't want him to but by the time I started to tell him no i fell to the ground and said "ay mama mia" my personality was changed to an Italian! I was so sad because I was just liking my own personality for once and he wanted to change the one thing I liked about myself. I was feeling like "i may be tough to deal with at times but I like who i am!"

oh my goodness. crazy crazy dreams. I'm just concerned the next dream i will be experiencing a rape or suicide because just dozing out a bit I start to hear the growls of that gym teacher. EEk.

Hallucinations and Nightmares

Alice in wonderland effect I should call it. I've been taking Vicodin and have had horrible nightmares the last 3 nights. Now i'm afraid to go to sleep. I finally was able to rest for about 4 hours or so but woke up so upset from my nightmare. I dont know which medicine I should take for pain because of this ugh!

Tuesday, September 02, 2008

tender and in pain lots of pain

i'm in so much pain. everything touches the base of my cranium because everything touches my spine! so any kind of pressure reaches there!!! any slight movement. and now the muscles there are really really tender.

surgery pain!!!

its been a week since i had surgery and now i'm feeling it. i'm so used to living my life around my pain and when i didnt feel it anymore i just did normal stuff like walk up and down stairs and lift a milk gallon (i know i know so horrible)

well NOW i feel it. its bad. but i know its related to my surgery. i HAVE to keep wearing my comfy shoes and do everything i did before so i dont aggrivate it again. how frustrating! i'm having a hard time because will i be able to dance again?

i'm having a hard time sleeping too and lying down. is the chiari pillow worth the 45 dollars? we are poor :-(

i feel tingling pain where they clamped and now shooting pain hear the scar. ugh!

up late cant sleep

for the first time in oh lets say 2 years! coffee keeps me awake. I'm all expecting a no prob the caffiene will only work for the pain i'll be sleepy soon type of response like usual. nope. i'm STILL up!!! And I drank only like 3/4 a mug at about 9:30. (I had a headache and this was a common remedy of mine okay!)

So since I'm up I'll be sharing about some other bothersome symptoms:
1) the upper right part of my scalp feels like its swelling but there are no signs of redness.
2) I'm tingling every few seconds for a few seconds sometimes painful tingling on my scalp (mostly in the prementioned area)
3) I'm studddd-dd-ering on some words
4) I'm gagging on my own saliva like 2x a day.

The PRESSURE HEADACHES now have gone. and they have found an accurate cause. Sorry Christina who once said maybe it was stress. Duh I was stressed but this was it! :-)(PS: I know you were trying to help) It only took 2 1/2 years! :-)

scar 7 days post op

Sunday, August 31, 2008

post surgery update

I'm home from the hospital. Ended up going to Ceder Sinai Medical Center. It was a good experience as far as the hospital goes but it was really painful. I'm still in pain. I was there from Tuesday to Sunday. I hope i heal up well and there is no complications from now on. I hope this helps me. I will see the doc on Thursday. And go back to school next week maybe. If all goes well. :-)

Monday, August 18, 2008

Surgery Postponed

So my surgery is postponed till next Monday because apparently I had doctors and nurses calling and leaving messages at my home (we are staying with my parents) about 17 messages asking me to call back because I needed some more blood work. Also I have to take 5 days of antibiotics to clear a minor bladder infection.

If I had gotten the messages right away I don't think the surgery would have been postponed. But maybe, all depends on the test results I think.

So I took the blood work today at Quest and I'm starting the antibiotics tomorrow. Here are the tests that were ordered:
Factor 8, 9, 11, 12
PT correction Mixing Study
VW Factor
Ristocetin CoFactor
Lupus Inhibitor
Antiphospholipid panel
Bleeding Time

All were taken except the Bleeding Time.

I guess the doc is checking up blood clotting problems because of the past blood work.

So the problem now is next Monday is my first day in school and I asked Mike to go for me the first two days except he will be with me those times. I don't know what to do yet... It's only 3 classes.

Friday, August 15, 2008

What is Arnold Chiari Malformation?

What is Chiari Malformation?

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Is there any treatment?

Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition.

What is the prognosis?

Many people with Type I CM are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent.

What research is being done?

The NINDS supports research on disorders of the brain and nervous system such as Chiari malformations. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and, ultimately, cure them.

Tuesday, August 12, 2008

pre-op apt went well

my husband and i are staying at my parents house for about 4 weeks. today was my preop appointment and it went well. went to the 15th floor on time and got an ekg. down to the 2nd floor to see the doc. i shared some concerns, showed him previous blood work and asked for an antidepressant now that i know a doctor cant say its ALL in my head and that it will help with pain. He confirmed that I have an umbilical hernia and I could take care of it later no problem. My ekg when i looked at it said I had some sort of arrhythmia but the doctor didn't say a thing so I think it's not going to effect my surgery. Went down to the 1st floor for a chest x-ray and 4 tubes of blood. Back up to the 15th floor to get an ultrasound of my heart a stress test (which I hated and couldn't complete) and another ultrasound of the heart.

What a fun filled day. Besides like 2 people every person at the hospital seemed really nice and on top of things. I like that I never have to pay for parking.

The sucky thing is now I cant take any anti-inflammatory meds.

I'm nervous but it's not too bad. I think I will be okay.

The question is now, where do I actually go for my surgery? lol. I know the hospital but it's not like I've done this before :-) I'll figure it out.

Saturday, July 19, 2008

surgery question

Hi, Im having decompression surgery on the 19th of August. I just want
to know what to expect. And if anyone has heard of Dr Lanman in
beverly hills. I'm nervous. I heard it was REALLY painful. How long
before I can go back to school, etc.

Monday, July 14, 2008

surgery date

My surgery is scheduled for August 19, tuesday at 7:30 in the morning. I'm nervous and I thought I was dealing with it well but I realized that I'm just stuffing my feelings instead of dealing with them. I'm worried about it and all the dangers of haviing surgery. There is some logic in my worries but I know I'm being irrational.

Someone said that I should check for EDS first because the surgery would involve fusing. But I think that I will do this surgery and if I have any problems I will check on that. But at my presurgery appointment I will bring it up along with my blood tests from a while ago that showed signs of blood clotting. But I'm not too worried about that. I hope this surgery helps.

And whats better is that the surgery is the day after my final. When the time gets closer I might end up taking the final the week before.

I have to bee off pain meds for 10 days prior so that will suck bad! Hopefully it doesnt interfere too much. When I'm in pain either I panic or I just forget anything else going on.

Thursday, July 10, 2008


So I'm having the ACM Decompression surgery. Just have to schedule it. The doctor said everything else was fine and I just have borderline Chiari. He let me ask as many questions as I wanted and I feel really comfortable around him concerning this. So thats good. Wish me luck.

Monday, July 07, 2008

head swelling

The last few days the back of my head has been hurting in two spots. Now it feels like its swelling and its really sore. I'm putting ice on it. Earlier I was having pins and needles and sharp pointing type feeling all in my thighs. It hurt more than normal.

drop attacks kinda

"Well I asked about drop attacks because I've been having something similar but not quite and wondering if people can tell me whats going on. I get really sleepy and my head falls forward. I stop in my tracks and my knees lock so I dont fall down. It lasts for about 10 minutes. Sometimes in the car but mostly when i'm walking. I think it's triggered by something because it doesn't happen when I'm just lying around all day. Usually I feel really nautious later."

Saturday, July 05, 2008

crappy night

I had a really crappy night. the fireworks had a lot of debris and it made it hard for me to breathe so i was coughing and i had a bad headache so i got a double shot iced coffee which helped alot. But what was crappy was after the show and walking to the car i started collapsing and getting dizzy and woozy in the head. It sucked alot. Now i'm feeling better. rested watched some tv and put ice on my head but i'm still nautious and i still feel lots of pressure up my spine and into my head. ugh! i missed my apt on thursday so i had to reschedule to next thursdayl.

Wednesday, July 02, 2008

doctors appointment

So tomorrow is my doctors appointment after i got my 2 MRI's today. I've been lethargic and depressed but realizing my depression is due to my lethargy. its a vicious cycle. I do not claim I don't have depression but I don't want to just give up on figuring out what my triggers are.

anyways i got to look at my mri's and i don't see any srynx's in my spine but I'm not a doctor or mri tech.

Monday, June 23, 2008


So I had a really bad attack last night. its 4am and I'm still nauseated and my back still hurts but it's calmed down alot. I just have to be careful so I don't aggravate it. I wonder if its because i tried a basic ballet class on Saturday. I don't really know what brings it on. It felt like that night I went to the ER. so i wrapped myself in a heating blanket on the couch and distracted myself with television. I felt like I was on the verge of throwing up for hours.Any type of position felt like pressure shooting up my spine. I still feel it but I don't know. UGH!

I am in line for this new job as a preschool teacher. It's perfect. I would work in the mornings and have my own class of 3 year olds. Its a small class and I would do whatever I wanted. I just hope I can handle mornings because mornings are really hard for me. I have a hard time waking up and staying awake. I don't want to look lazy and I want to give them all my attention. At least I'm not an assistant because that would put more pressure on me to perform and I would have to do heavy lifting.

I am so stressed out too. I need to see my therapist but she's been booked. I might have to see someone else. Thats good too because even though the rest of the therapists in her office are Christians I am pretty sure she is not.

Wednesday, June 18, 2008

so its official

(note this is not an mri of MY brain) diagnosed today. i have chiari's. ugh! i was hoping it was something i could fix :-( i have chiari malformation. i'm seeing a doctor in beverly hills recomended by a friend. i'm getting some more mri's done in two weeks because he will be out of town.

Tuesday, May 27, 2008


I remember a year and a half ago running into an old friend from high school and on the verge of tears because I was about to lose my job. The start of my illness in full swing trying to put behind me the horror I went through the summer before. Her life was going great, hot boyfriend, head of her sorority Delta Delta Delta. I'm worried I can't make it to my dance class because of my bout of narcolepsy coming on me making me more insecure. Embarrassed because I look flaky. vulnerable and lazy. I'm not that person although my past before college dictated that I was. My life was doomed to disappoint. And it didn't stop there. It took another year before the light would begin to show.

A year wasted? I think not. It's not something i wanted. It certainly felt like it was wasted. But God had His plan. It was a boost into the healing that I wanted, that I asked for. I've learned the art of grieving about the idea of hope. And though my life looks like I'm choosing these paths, the path was chosen for me. I am limited I am working and going to school like I was before. Maybe people will think I"m picking up where I left off, and in a way that's what I want.

But it's not like that. As I'm writing this I know I will go home so I can use a TENS unit on my tense muscles that go spastic whenever they want and I have my instant ice packs in my purse along with an almost empty bottle of Aleve, Migralief tablets and my Dramamine for nausea. My sunglasses are always available. The major and classes I chose, the work I choose has to be flexible. If I have a bad day and need to stay home or if I need to zone out or rest. I have to learn to relax my muscles as much as possible and even though I want good posture I need to forget about that for the sake of neck pain relief.

Whats gotten me through has been http://chronicillnesssupport.typepad.com/ and this verse:
I waited patiently for the LORD;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.

Also the knowledge that all things are for the good of all those that believe. The order of events in my life contribute to the order of events in another life. If I know that theres a possibility I'm in pain and distress because another person will benefit greatly it is worth while. It's a way to endure.

But one thing that has been constant since the start of my back pain 2 years ago is I have prayed and hoped it would not interfere or cause my dancing to go away. I don't know why but I still have that passion and who knows if it will ever be fulfilled in any way. I hope that my blogs are a source of encouragement to anyone out there.

PS I do like my classes and I do like my job and I am enjoying my husband more and more each day.

Sunday, May 11, 2008

happy update

i noticed that my blogs were depressing so I wanted to let everyone know the good things coming out of this. I'm slowly able to to more and more. My mom and I are trading Saturdays and going to each others home to help clean/organize. i had gone to the ER the first week i started work and the doc took an xray of my lower spine which showed that the only thing noticeable was that my tailbone was straight instead of curved. The doctor said I have bad back spasms though and prescribed muscle relaxers and pain medicine which I was not able to afford. but all in all I'm doing better. I'm trying to relax my back as much as possible, not rush etc.

We still need insurance. Probably going to go with student health insurance. the safe route. but not sure yet. we'll see. any suggestions?

Thursday, May 08, 2008

post-polio syndrome?

"Partly due to association with past epidemics there has long been hypotheses linking ME/CFS with polio. From the very first well documented epidemic in 1934 (labelled Atypical poliomyelitis) the question has arisen concerning the relationship between an infection and immnunization. Many ME patients prior to 1956 suffered a paralytic association along with typical ME/CFS symptoms, however post 1956 ME/CFS patients have been spared paralysis, and it was hypothesised that polio immunization altered the symptoms common in earlier epidemics. Despite polio having been first described in 1881 there was no mention of PPS or even named until about 1979, the same time ME/CFS catapulted into public attention, and the rise in numbers of PPS closely parallels the rise in ME/CFS. It has also been noted that patients who had previously fallen ill with Akureyri disease (a synonym for ME/CFS) in 1948, and the general population of that particular area, of Iceland failed to succumb to the polio epidemic that swept that country at the time. Which raised the questions; are many ME/CFS patients simply PPS patients who had contracted a subclinical case of polio years earlier or is ME/CFS in subgroups, a poliomyelitis variant? [5] [6] [7]"

Reasons I could have had a mild case of wild-poliovirus
#1) I did not have a polio booster shot prior to my trip to Ethiopia
#2) There was an outbreak coming from Nigeria around the time I was in Ethiopia
#3) I had diarrhea upon returning for 2 weeks.
#4) One other person on my trip came back with symptoms including mild paralysis on one side
#5) my main problems are back spasms, joint pain, dysautonomia like symptoms, hypoglycemic like symptoms, fatigue

Sunday, April 20, 2008

unhappy and unsatisfied

but i feel unsatisfied and unhappy but mostly unsatisfied. i'm not sure why. i think it has alot to do with my health and how i used to be and how i am very limited now.

for example i cant even enjoy you know with my hubby because i get muscle exhaustion. i cant enjoy housework because now i work 4 hours a day and come home feeling unwell. i cant just get up and enjoy life anymore. all i can do is go online and go on the computer and go out sometimes and go to work now (my first week). every action i take and every goal i set is limited by my health.

I used to dance. before i got really sick i realized what i love the most is dancing. now i cant do it :-(

what to do?

my first step i think is going to join the ymca. they have arthritis swim and chair classes so we'll see.

Monday, April 14, 2008

some pain relief

finally got some pain relief by sitting on a chair backwards literally on my crotch :-(

i dont know how i'm going to get by like this. i start work tomorrow and i'm starting school in a month.

i might have to invest in one of these kneeling chairs with a cushion/pillow.

Saturday, April 12, 2008

chiari question (undiagnosed)

i noticed when i sit my hip bones put pressure into my spine putting pressure into my head causing horrible pain and then a migraine. this also happens when i walk and my heels put pressure into my head! is this chiari symptom?

im waiting on insurance to see a doctor.

Friday, April 11, 2008

health update

So I want to update everyone on my health. Its been a tough ride!

I'm feeling alot better now. My lab work shows no signs of any infection.

I'm starting a part time job next week at an afterschool program. I don't know yet which school it will be.

I'm starting school again for summer. I'm changing my major to psychology although I absolutely loved Communication Disorders! But that major was like taking a midterm every week in every class. There was no break. And it's too hard on my body. Psychology is a big major at CSUN so I can choose which teachers and what times I want classes. I will be graduating hopefully next spring!

I started acupuncture which has been helping my pain and sleep.

I hope to get health insurance soon so that I can see a few more doctors. My back is really messed up, I noticed I feel much better after eating salty foods, and i still get those pressure headaches and migraines.

I have chronic fatigue syndrome now because of the infection but I'm able to manage it fine, though I can't do any aerobic exercise.

I've had to work through all my feelings in regards to becomming sick which I hope to continue doing, because it changes your life dramatically.

And I hope that people will call me and hang out with me soon, cuz i miss everyone!

Friday, April 04, 2008

"flu lik esymptoms"

'Flu like symptoms often occur when the thoracic spine becomes stiff. Passive or active mobilising techniques of the spinal and rib joints can alleviate the symptoms.

this quote was in the above website about hypermobility syndrome. does anyone have this? i do! when i would go to the chiropractor about every 3rd visity my thoracic back stiffens up and subluxes fast and i feel more sick trying to move it.

what has helped it for you?

Tuesday, April 01, 2008

instant antibacterial hand cream

do you think this is a good idea? i've stayed away from it mostly because i dont want to get a superbug but i'm thinking to try it out for a while cuz i might start working with kids again.

who uses it and who doesnt and why? does it help? if you dont use it what else do you do?

all day migraine...again

spent all day with a migraine. sleeping, in pain, got absolutely nothing done. ints 430am right now and i'm finaly getting something to eat

Monday, March 31, 2008

first aid bag

when i start school i want to have all the things i need to get through the day with me.

list the things that you would bring with you i'll start

1) instant ice packs

rantings about being sick

why do i have to deal with this crap every day? i'm only f-ing 22 for god sakes! its a constant battle dealing with symptoms! and not just symptoms but everything that comes with it! today its my ass feels numb and my body hurts and i have a headache coming on so i put an ice pack on my head and the bed is uncomfortable so its an f-ing pain to move the blankets, it takes energy to move them one by one while in pain. if you can't imagine it and you think i should just shut up and stop complaining 1)go f-yourself or 2) imagine that every action you take every slight movement in your body causes you pain or some type of bad reaction. all you want to do is curl up and die and dream of your life that you should have had! ugh!!!!!!!!!!!!!! every day i wait patiently waiting waiting waiting for it all to go away for me to finally start to get better!!!! i waited for the money to come in so i can see that crap doctor who thought he was helping but just spewed the same shit he did to the previous 60 people who came in, and the supplements he suggested didnt help! why? because he doesnt know SHIT! he says they are all up to date on all the cfs and fibro treatments! bullSHIT! i'm more up to date than he is! and i'm just a person with no college degree. ugh!

Sunday, March 30, 2008

celexa withdrawal

Symptoms of withdrawal include dizziness, tingling sensations, tiredness, vivid dreams, and irritability or poor mood.

it sucks not having insurance. its like pulling teeth to get a prescription

Saturday, March 15, 2008


hi I have not been diagnosed with chiari's but i'm pretty sure I have
chiari 1. (i have mri's and symptoms)

anyways i was wondering if anyone has bad posture and if this is
related to chiari. when i try to have good posture i can do it for a
little bit then it feels like my bones are crushing in and i can no
longer do it.

Friday, March 14, 2008

lab results

thrombotic marker panel: d-dimer test high: A negative D-dimer test result may be helpful in excluding the presence of a blood clot. A positive test, on the other hand, is not, since it can be due to many things other than thrombosis (for example liver disease, trauma, surgery, pregnancy, infection); it, therefore, does not confirm the presence of a clot. In patients who have had a clot in the past, who are known to have a clotting disorder, or in whom the physician has a high suspicion for a thrombosis, the D-dimer test is not reliable and should not be used; in these patients one should go straight to obtaining an imaging study (Doppler ultrasound, venogram, or lung scan). The D-dimer test can return to normal within a few days to a week, but that depends on how elevated the test-level was to begin with and whether there are other reasons for the level to be elevated.

C3A DESARG FRAGMENT high: Elevated C3a concentrations are found in most patients with active SLE; C3a concentrations start to rise 1-2 months before SLE flares (e.g., nephritis, pericarditis and/or cutaneous vasculitis), and are also elevated in pregnant SLE patients.4 C3a is elevated in 33% of patients with non- immune nephropathy (polycystic kidney, hydronephropathy).4 Elevated C3a is also reported in patients with rheumatoid arthritis, multiple sclerosis, Guillian-Barré syndrome, diabetes, neonatal bacterial infection, sepsis, acute respiratory distress syndrome, thermal injury and following different forms of extracorporeal circulation such as hemodialysis and cardiopulmonary bypass.4

PLASMIN ACTIVATOR: Inhibitor (PAI-1): high: Elevated levels of PAI-1 are associated with risk of throbotic stroke, myocardial infarction, venous thrombosis, diabetes and pregnancy.

Epstein Barr Early AG: (R+D) IGG, IFA: Antibody Detected: A tansient elevation in titer is seen in 85% of acute EBV infections. Although low titers may appear at a later date due to asymptomatic viral reactivation. Titers are also elevated in Burkitt's lymphoma and nasopharyngeal carcinoma.

Past Infection

CHLAMYDOPHILA NEUMONIAE C. Pneumoniae IGG high, C Pneumoniae IGA High: Past Infection:

Iron Total: High, Saturation: High

Carbon Dioxide: Low

Tuesday, March 11, 2008


hey so i think i might have EDS and Chiari's. We'll see. once i get insurance i'm seeing a geneticist.

everything hurts today. all my joints. my mid back is out and it hurts. i took a whole 5 hour energy drink today and have almost normal energy. that is sure sad.

Tuesday, January 15, 2008

here we are again

so I've transitioned from the 2 weeks of joint pain so convincing that i made an appointment with a geneticist to rule out Elhers Danlos syndrome. Either way I have hyper mobility which could cause more joint pain so better treat it anyways. I think it's the same with my allergies. Yeah I have allergies and I am treating them but theres so much more to it than just allergies.

Now I transition from needing heat to needing ice. Migraines up and down my spine and head. Heat radiating from my body. Last week I had a sore throat and thought I had strep throat. Body aches, sleepy etc. But I didn't. As usual my temperature was down.

Now I wake up at 12:30 still tired and weak. I will probably do nothing all day. It's good I set up my business and school online so I can still function somewhat.

I'll be sending in all my SSI paperwork today. I hope I get it so we can pay our bills and not stay in debt and I can get the treatment I need to go back to work someday.

It's sad its been a year since I became completely disabled. Almost a year since I had to stop dancing. I thought it would be over by now. I no longer hold on tightly to my dreams, because I never know what the next day will bring.
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