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.

yay

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.

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.

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.

pain

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.

pros and cons

pros:
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)
Cons:
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

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．　

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?

migraine

the never ending migraine.

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!

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

Day two after I came home

Day one after i came home