lungs

so its been a few months since my last post. thats probably a good sign. I am doing well, except i had to move and find a new job and my car broke down and my bike was stolen. But now im walking/busing it to work which is pretty much down the street and i dont have to pay gas or insurance or car maintnence and i love where i live and who i live with. anyways, ask far as health stuff goes, i got sick my second week on the job with bronchitis and a bad cold. took the meds and felt better. for the last few days my chest has felt really tight so i went to the doctor and had a breathing treatment. no asthma or pneumonia. and i got an inhaler.

my back and neck pain is on and off and my coworker is always wondering if i can "handle" the job because i sigh alot throughout the day and rest my back as much as possible. she doesnt understand obviously but im being patient. walking helps my back and so does ice and heat, rest etc. as well as being with friends. ive stopped PT again this time cuz i cant get there and I am broke and still owe them 65 dollars. sucks.

not sure what helped tonight, the 2 cheeseburgers, the double shot latte, or the 3 doses of albuteral in a 3 hour period. we shall see. Im considering trying the gluten free diet just to see what happens. But it's still in the air.

i have to just laugh

"i can cry about it or just laugh at those who cant scratch the middle of their back..." haha.

the pain sucks. hypermobility or eds3 sucks. my spine feels like a collapsing accordion. i have to just laugh at it though, cuz im gonna deal with it the rest of my life...

Drs....aye aye aye

I went to the doctor here at my school. He was an orthopedic surgeon. I went to get a simple PT referral so insurance can pay for it. He had an assistant and was moving my arms around and knees and thumbs etc to show him how I "move" and "sublux". Same thing happened at PT last Thursday. Hopefully this helps, PT. My mom knows a holistic healer type person who sounds interesting. I might try that too :)

shoulder impingement

ah yes my hypermobile shoulders have now gotten the best of me. two days ago my shoulders were starting to hurt. later my head hurt as i was driving to work. i thought, here comes my migraine (in my shoulders) i dont know what i was thinking. anyways i would get bursts of pain shooting around my shoulders and also in my head. it was weird. i took medicine, i also put ice on my back. the next day in ballet i asked my teacher about the pain, she said it probably was from tense muscles in my neck/shoulder area. i sat out half the session putting icy-hot on my shoulders. i missed classes that day so i could go get a massage. the pain was that bad. though the massage felt good the pain still lasted through the night. i tried licorice tea as well as ice and heat packs. this morning i went to school, i was in pain. i thought i would miss my midterm because the pain hurt i couldn't think straight. i went to the health center at school and they said i would have to come back tomorrow. I had my therapy session and was still in pain. I decided to go to urgent care. now i have nausea as well. the UC doctor sent me to the ER just in case... i dont really know why. While at the ER the doctor did "excessive testing" as he put it. I had x-rays, a ct-scan of my lungs, and four viles of blood drawn. all to find out that it was impingement.

anyways this is a secondary condition to shoulder instability. yikes. now i definitely need physical therapy. im on it!

nightmares

its funny how health conditions can produce psychological problems. if i didnt know better my nightmare would still be terrifying me now and probably for a few days. i dreamt i was in an old battered house in simi valley and i was getting some old jewelry. i saw a figure outside and i went to yell at it. the figure ran inside, it happened to be a girl. but a man ran inside as well. instead of running after the girl, now i was running from the man. freaky. anyways i woke up and i was feeling hot. my hands and feet hurt. i feel woozy. i know my salt level is low. i eat some olives and drink some water. i get my blood circulating by doing a few stretches and i rub my hands and feet with some cream or lotion. i set the temperature in the house down a few notches. when i lay back down i will raise my feet up a little so that the blood will get to my brain better. now i have sweet dreams.


anyways, my body has been feeling good. the only thing bothering me this week is my back and shoulders being so sore that i end up getting migraines. and ive been lacking quality sleep. im moving though soon to my own room so i can have some solace. i need to add more to that solace and get my finances straightened out and have a financial plan so that i never have to freak out about rent or bills. ie: maybe i have to get a new job cuz my job isnt giving me enough hours. you do what you have to do.

body pain

this morning i wake feeling sad/dull. then i survey my body and notice my whole body hurts, pins and needles. my head hurts too. its mild but enough to ruin the happy me. its time to take this seriously. ive been avoiding doing anything really health related since the beginning of the year for a couple of reasons. ive been through some drastic life changes, and because i was overjoyed with the ability to go to school, work, and have a social life. its changing for me again, i see.

to be honest

i feel like im getting worse. my eyes have been hurting for 3-4 weeks now, ive tried lots of things to help it and it seems like its only improving slightly. now tonight my upper spine feels sensitive. i'm trying to figure out the cause, if its me or what. i dont know. im going to keep track of my symptoms daily for now on.

stress and pain

I'm really stressed out. I have a job and going to school full time. I just moved into the dorms. I've been lifting too much stuff walking too hard and fast and going going all day long. I've had a head cold the last week. And my head and shoulders have been hurting a lot llately. I don't know what to do because I need to be a full time student to live here and I do not want to move again. I also need to get more hours at work. When I'm up and about it doesn't hurt as bad. I'm going to try my dance class tomorrow I'm just worried it will be too much for my back. At least the teacher was my teacher before and when I got sick so she's understanding. I also need to start physical therapy again. And on top of all that I need to pay my way past due bills and clean up some odds and ends at the old place. I'm just hoping that when my stress lessens then my body will feel better. I worry that I'm either doing too much or I'm getting worse. Both of those are bad cuz I'm on my own now and I have to do all that. I can't afford not to. I also can't afford to get worse. I drove a half hour to work every day and it's bad posture the whole time. At least I'm away from people stressors. Maybe I'll start combating one stressor at a time and see if that helps.

doing good

a long awaited update yes it is.

im doing good. I am getting pressure headaches and migraines but they are manageable. I can dance and work and go to school and clean dishes and cook and do laundry. but I need to pace myself. i'm sleeping well and refreshed. i hiked like a mile and a half last week.

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.

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.

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.

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．