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

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. :-)

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.

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.

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.

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.

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.

surgery

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.

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."

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.

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.

attack

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.

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.

Sunshine

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:
PSALM 40
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.

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?

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

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.

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.

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.

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!

"flu lik esymptoms"

Quote:
'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?

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

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!

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

posture

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.

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.

HERPES VIRUS 6 IGG: High: Past Infection

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

Iron Total: High, Saturation: High

Carbon Dioxide: Low

eds

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.

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.

Merry Christmas

I wish it was Christmas every day. I like the tree and the lights and all the warm fuzzy feelings.
I hate the wind it scares me. Stupid Santa Anna Winds...
I hate those little red dots I get randomly on my body.
I like that I've been doing better emotionally and physically. Not great but better.
I haven't updated it a long time. Same as last year.
I moved. My husband and I. in with another couple. Close friends of ours. Long time friends. So far so good.
Changed churches, dropped our small group that was getting us down.
We like the new church. I like the new church. Things are more secure now.
There are some ups and downs. I still have insecurities but they are not as bad.
I'm up because I can't sleep. Nothing new. My body is in pain. A different pain than before. It's always transitioning around my body. Depression, sinus pain, head pain, neck pain, full body pain, fingers and toes pain, depression. Gotta be the lyme.
Grandparents surprised us with my old savings bonds. Over five hundred dollars worth. Taking that to the bank, and using it for my first doctor visit at another place.
The old doctor is a crack.
Whatever.

"i'm new" from PTSD HealthBoards.com

i've just been watching and posting some but i wanted to share this time. I first went in to my therapist to talk about all the issues pertaining to having and dealing with a life threatening illness. and then i realized i was having more and more phobias. i thought hey! i'm better practically shouldnt i be happy? so the cycle began. or shall i say i realized my cycle. so last week i had a breakthrough and realized where my phobias were stemming from kinda. i was happy. then told my therapist and opend the can of worms and all this week i've been a wreck! in and out of reality, dazed, and so upset cuz i cant even go to school or be productive in any real way. i was beating myself up because i thought i was just anxiety prone and it was my fault right?

well tonight i went to mcdonalds to get a burger. it brings good memories of when i worked there and ate a certain meal all the time. this time it brought all the bad memories with it. and i realized i'm not anxiety prone from birth. I've been through alot of trauma and i've just been on hypervigilant mode since! now i can relax and i dont like it cuz all this is comming out! all the phobias werent just that, they were stemming from me stuffing it all down ready for my next move to survive.

at least i know now that i'm not crazy. but it sucks cuz thats one of my traumatic things from high school my step dad saying there was a demon in me and my mom saying i was a tough kid with problems since i was born. i'm still paranoid about that. though i know the truth cuz people tell me.

anyways whats the next step? acknowledging i had traumatic things happen to me? i feel selfish, like suck it up courtney, you need to survive. thats what goes through my head. yet i'm not surviving like this.

does your stress disable you? from PTSD Healthboards.com

I feel like i go in and out of reality so often that i cant focus or go to school clean house... i wish i could just think away all my problems and then boom i'm back to happy me who could manage a job full time school and be independent. it takes so much energy to hype myself up to go to school and study. then i just stress and want to get away from it all again. right now the only calm i have is if i zone out. but then i'm not productive. i feel weak emotionally. like i tell myself "comon courtney! get yourself together, dont be so selfish and be responsible. act like an adult!" but i just can't. it doesnt help that last week in therapy i left feeling like i just opened up a can and its only going to start spilling out. but i cant help but think that i will always be this way and its only my fault.

can anyone relate?

feel grimey

does anyone feel grimey inside their body? like they have an infection? don't laugh but you know when you get a skin infection and its all pus and stuff? i feel that way about my inside my body. and i feel grimy. sometimes (not recently thought) i would feel like this grimeyness would seep out of my skin. can anyone relate?

natural disasters from PTSD Healthboards.com

well my grandma had cancer that almost killed her then a year later i became disabled lost my job then had to drop school because of a serious illness. and having heard about all these disasters with katrina and the tsunami and such i am hypervigilant about these types of things. my main thing is "anything could happen at any time!!!" right now i'm shaking thinking about these things.

does anyone feel this way: i get anxious at night when i'm tired and worry but tonight i stopped to just feel my feelings and they werent worry at all but a feeling like i'm uncomfortable just having things be okay and not worrying about what bad thing is going to happen next... so i let myself be uncomfortable and all i wanted to do was cry. or be sad or whatever. (btw my illness was so in and out for over 9 months and i just recently got over it like a few weeks ago)

triggers...tv and movies PTSD Healthboards.com

since i suffered from a pretty serious illness my triggers involved heaven or afterlife or some other thing that portrayed life being different that it is. i stopped watching scarey movies a while ago when i used to be terrified of loud sounds. and whenever someone brings up or takes light of death or murder or hurting someone i freak. it pretty much is the same in tv and movies. i had to walk out of pirates 3 because jack was in the underworld and they had to turn the boat upside down or whatever to make it back to the real world. freaked me out.

pretty much better from Lyme Healthboards.net

just wanted to say i was infected for 1 1/2 years with lyme and bartonella (only the bartonella was confirmed by tests) found a lyme doctor in february and was treated with oral antibiotics for 8 months. we have stopped the antibiotics and i am rehabilitating myself. i plan on doing another protocol just to wipe it out entirely. i cannot do the things i used to do yet but i'm not really sure i want to. i hope this brings you hope. i'm not fully better but i can function.

another thing i didnt realize i would have a problem with is Post traumatic stress from the whole thing. im young and right before i got really sick my grandma almost died from cancer. so that really traumatized me being sick myself. anyways i'm seeing a health psychologist who specializes in trauma as well. its great but i had still feeling lousy emotionally.

no more antibiotics

been off antibiotics for aweek now. i feel like i did like 9 months after i think i got sick. doc thinks i still feel bad because antibiotics are like poisons. if you didnt know my illness began a steady incline about 2 years ago and i started treatment in february.

i felt crappy tonight but i'mpretty functional besides the post traumatic stress from the whole thing and occasional crappiness (every other day to every day). and i just started jogging around my small block. my goal is by tuesday to be able to run around comfortably once. and next week move to twice around.

any advice? i'm telling my doc tomorrow that i still feelcrappy. i def wouldnt be able to work. but if what he is tellingme is right then i'm defintely on my way.

depersonalization and derealization

anyone get this? it seems like i've been in it for a couple of weeks now. and i'm slowly out of it. i dunno really. i cant remember.

anyways, its like the world is flat, i have this thick cloud around my head and i can only see in a tunnel vision. i used to love watching things like the sunset but it seems i cant see it. when i lose stuff i feel like i cant see things to find them. like my peripheral vision is shot.

also i feel like my senses have decreased drastically. touch for example. its all slowly coming back so i'm feeling more optimistic. there is a light at the end of the tunnel!

Climate Change Ticks Ever Closer

On the Leslie St. spit, signs of global warming are being picked right from the feathers of migratory birds. And the ticks now spreading north carry with them the spectre of Lyme disease
Sep 01, 2007 04:30 AM
Hannah Hoag
Special to the Star

At the foot of Leslie St., a spit of land fans out into Lake Ontario. Over the years, the man-made peninsula, built with rubble from Toronto construction sites, has grown into an urban wilderness, home to butterflies, birds, rabbits and the occasional coyote.

The cottonwoods, birches, grasslands and bugs make the park popular with migratory birds that stop in to refuel on their flights – many coming from as far away as South America.

But lurking among the feathers of these international travellers are blood-sucking stowaway ticks that can carry Lyme disease.

Every morning before dawn during the spring and fall bird migration, Dan Derbyshire, co-ordinator of the Bird Research Station in Tommy Thompson Park, organizes a small group of volunteers who track the birds winging through the region.

The station is part of the Canadian Migration Monitoring Network, a string of sites across southern Canada and the northern United States that monitor the population trends of northern breeding birds.

From March to June, in 2005 and 2006, Derbyshire and his team of volunteer birders plucked ticks from the heads of the migrating birds. Then they mailed the ticks to scientists who are trying to gain a better understanding of how birds and climate change might increase the spread of Lyme disease through Canada.

"The number of cases of Lyme disease have been fairly low in Canada, until recently," says Nicholas Ogden, an expert in tick-borne diseases at the Université de Montréal in Quebec and a researcher at the Public Health Agency of Canada.

Since the 1970s, parts of the United States have suffered an epidemic of Lyme disease, mostly within the northeastern, mid-Atlantic, and north-central states.

In the United States, approximately 20,000 new cases are reported each year. The disease – which causes fever, headaches and can spread to the heart and nervous system if untreated – is rarely reported in Canada, but ranks among the top bug-borne diseases in the United States.

Ten years ago, eastern Canada had only two known populations of Ixodes scapularis, commonly known as the eastern blacklegged tick. Today, there are 13 or 14, says Ogden.

"It's not that those two have spread out, but that there are new ones bobbling up," he says.

They tend to settle in migratory bird landfalls, resource-rich chunks of land near large bodies of water.

Point Pelee National Park is one of the better-known migratory bird landfalls in southern Ontario. Each year millions of migratory birds funnel through this small spit of land that juts into Lake Erie.

But the Leslie St. Spit, the Toronto Islands and the Toronto lakeshore are also popular resting spots for migrants.

Like Point Pelee, the region lies within the crossroads of two major migration flyways. It provides weary-winged travellers a chance to rest during their migration over the Great Lakes and stock up on energy for the next leg of their travels.

"Toronto has always been on the migration highways," says Derbyshire. "There are lots of green spaces where the birds can drop in and rest, and the creation of the spit has really added to that."

Ogden says the migratory birds may be bringing ticks into Canada after passing through the northeastern and north-central states, where they're abundant. The birds may also be carrying ticks from established Canadian populations farther north.

Other researchers have previously found blacklegged ticks on migratory birds. "We just wanted to know if it was rare or a common thing," says Ogden.

Although Ogden won't reveal details of the study until they have been published in a scientific journal, he says all the stations from western Ontario to Nova Scotia captured migratory birds with ticks on them.

"We think migratory birds are quite efficient at spreading the tick around," he says.

But once the ticks are here, will they survive?

Canada's cooler climate once offered protection from the diseases of warmer regions. But as climate change brings milder winters, scientists worry that the ticks – formerly limited by the cold – may move farther north.

"Insects are cold-blooded – air temperature determines body temperature," says Jonathan Patz, Director of the Center for Sustainability and the Global Environment at the University of Wisconsin in Madison. The warmer air temperature can make it easier for the insect to survive the Canadian winter. It can also speed up the rate at which it develops.

According to the Ministry of Natural Resources, should greenhouse gas emissions remain high, average summer temperatures in southern Ontario are expected to be 4 to 5 degrees Celsius warmer and average winter temperatures about 6 degrees Celsius warmer before the end of the century.

"All the biological processes that are going on require a certain amount of heat," says Ogden. "If it is very cold, those processes are very slow or will stop altogether."

"When people say why should we worry about a half-degree of warming, it means everything to a mosquito carrying dengue or West Nile virus. It means do you have infectious mosquitoes after 10 days or three weeks?" says Patz.

are people SERIOUSLY afraid of the West Nile and Bird Flu???

The Press of Manorville & The Moriches Sept 7, 2007

Trying to take a bite out of Lyme disease---Romaine calls for tick management

http://72.32.16.161/daily/Skins/southamptonm/navigator.asp?skin=southamptonm&BP=OK


By Bryan Finlayson

Rita Mischke, a resident of Baldwin in Nassau County Long Island, was a part-time Central Park ranger and legal secretary until she became a disabled adult.
The 58-year-old unexpectedly contracted Lyme disease from a tick that latched onto her back during the summer of 1998. Several months later, in October, she started noticing a weakness in her left side. She was dancing at her 50th birthday party when she noticed she was having trouble moving.

Doctors told her that she had multiple sclerosis, a disease that gradually destroys the nervous system. However, she says she was misdiagnosed. After going through eight doctors, she was eventually diagnosed with chronic Lyme disease, which, if left untreated, can be fatal.

Ms. Mischke was diagnosed with the disease in 2003, the same year she had to stop working and go on disability. She maintains that the disease has ruined her body.

“It has taken my life away. Because of it, I lost my job and, as you can see, I can hardly walk now,” Ms. Mischke said as her helper dog, Slate, stood beside her. “I certainly hope that I will recover enough to walk on my own. If I get there, then that will be the day I do cartwheels.”

Her story was one of many shared last Thursday afternoon, August 30, during this year’s Lyme Disease Forum, an annual event held at the Suffolk County Center in Riverhead. The event, hosted by Suffolk County Legislator Edward P. Romaine, is meant to spread awareness about the disease. About hundreds from across Long Island attended.

The disease is not obscure and affects the lives of thousands on Long Island each year, Mr. Romaine said. More than 1500 cases of Lyme disease are reported to the state Department of Health every year from our Couties alone. Long Island is seen as a hot spot for ticks carrying the disease, he said.

Meanwhile, there is little the government is doing in the way of prevention. Mr. Romaine said the county spends millions on mosquito control to prevent the West Nile virus, which affects only a handful of people per year, while no money is spent on tick control.
“I can tell you that this is a serious problem,” Mr. Romaine said.

Dr. George Ruggiero, a practicing Lyme physician based in Wading River who spoke at the event, said there is a lack of training in the medical community to detect the disease in patients. He said the disease is problematic to detect because its effects vary greatly from individual to individual. Some people show extreme fatigue, while others exhibit joint pain or trouble focusing.

“Many patients are falling trough the cracks in the medical system,” Dr. Ruggiero said, stating that undiagnosed cases may be 10 times the reported number of cases. “There are so many different symptoms. That is one of the many issues you’re dealing with out in the medical field.”

Though there are doctors who specialize in Lyme disease, a majority of doctors have little training in identifying the disease. Many doctors rely on a series of blood tests to tell if a patient contracted Lyme.

Dr. Joseph J. Burrascano, an East Hampton Lyme physician who retired from practice in 2006, said there are two tests, ELISA and the Western Blot, that doctors use to identify Lyme. Neither test is very sensitive, he said. The ELISA test “if negative, doesn’t rule out Lyme,” and the same goes for the Western Blot test, Dr. Burrascano said.

He said many Lyme patients need antibiotics to combat the illness at its early stages, within several weeks after a tick bite.

Nonetheless, many patients who need antibiotics never get them because the antibody level in blood—what both tests measure to detect Lyme—might fall just short of a pre-established benchmark.

Unfortunately, many patients don’t make it that far because they don’t meet the threshold to make that test positive,” Dr. Burrascano said. “A fair [number] can have a completely normal Western Blot and still have Lyme disease.”
There are two conflicting schools of thought in the medical community that are currently battling over procedures to recognize, and treat, Lyme disease. The Infectious Disease Society of America, currently the standard in the medical community, advocates a three-week treatment period for patients diagnosed with Lyme. That is not enough time to fully treat the disease, Dr. Ruggiero said.
“This shortsightedness for the threeweek period for treatment needs to be eliminated from the thought process,” Dr. Ruggiero said, emphasizing that antibiotic treatment can take months to years. “If it is not treated completely, it will wax and wane for years and years.”

Daniel G. Hassan, 22, of Brookhaven Hamlet, Long Island, said he contracted Lyme when he was 12 years old and was only partially treated. Now his symptoms—including mild seizures and fatigue—are reoccurring, he said. He said he takes 30 pills every day, antibiotics and seizure medications

The disease forced him to reevaluate his life, he said. “It kinda made me, I don’t know, more cautious. It [made] me cherish my brain more, to use my thinking ability as much as I possibly can,” Mr. Hassan said.

i hate writing these posts as much as i hate taking my medicine

i hate writing these posts as much as i hate taking my medicine. but both are necessary. ive been feeling better the last few days and i'm thinking it has to do with the following or just one of the following:
1) ive been on my new antibiotic for more than a week
2) my cousin and her toddler daughter stayed at our home for 4 days
3) i had my period and now its over
4) i'm happy with school and its filling my mental needs (i dont really know how to put that)

things that have been better:
1) i've been sleeping through the night going to bed earlier and waking up earlier
2) i've been handling this very hot weather rather well
3) i've been eating a little better
4) i was able to walk across the street and back today to get food

things that have been bothering me thought:
1) horrible head pain today (probably from the heat)
2) i was really weak during my period and before
3) anxiety at night
4) i get bouts of narcolepsy randomly

I want to be 21

I am very dissatisfied with my life. And rightfully so. Some would chalk it up to depression and at times I would as well. I want to live life fully. And yet I try to live life fully given my limitations. Do you ever feel like life went by and you did extraordinary things during that time but never fully lived it? Of course not. Not many people do. Or should I say they do because nearly half of all Americans have to suffer through invisible illnesses. I'm only 21 but this illness has caused me to age significantly to about 80 and back. I've lost friends for different reasons. Because I can no longer keep up any kind of social life and because I am no longer willing to be around people who judges me for my illness and the decisions I make around it. So when I want to be around people my age and actually experience what a college student should and when I'm ready for it it's not available to me. Other times, nearly 80 percent of the time I do not want to be around people my age. Few have had to deal with something like this. They cant understand why I am the way I am, even though I so desperately want to have that full of life feeling where I can go anywhere on my two feet. I've lost the last year of my life. I've lost it, even though others haven't. I can't find it and it wont return. That whole year of my life no matter how wonderful things may have been, its gone. I cannot take it back and use it to my maximum agile energetic ability full of passion and promise. Things that are "fun" in my life now, Being ABLE to notice the sunset, oh something i used to dream for every day and now all i can see is the pain in my eyes and all over my body, in my stomach and weakness, sleepy always, feel like my mind has went from IQ of 120 to 50 in just one short year. embarrassment from lack of mind. GONE its all gone. And I can't even look back on the year to remember it and remember the things that happened. Its like my life stopped for a year I was in a coma that was full of crushing pain while everyones lives continued on.

rifampin

my doc added rifampin to the mix today! i'm learning to trust him more.

i got a rash?

it started out as an itch and i rubbed it. a while later my friend noticed it and i looked at it more closely. i noticed it resembled the lyme rash but smaller and fainter. its next to this "scar". the story behind the scar is that i just noticed the scar like 3-4 years ago and never ever remember hurting myself there. i wonder if the rash is related to the scar in any way. anyways i put some pictures of it here to see what you think. its kinda hard to make it out so i put pictures to show where it looks like a bullseye...

Hands and Feet hurt

anyone else get this? and they get red almost as if my blood is pooling to them.

the last two weeks

i went to the doc and he told me to take double my meds. as a result i've had an overall increase in symptoms. i had some marital problems that did get resolved but i hurt my neck in the process. so i started going to the chiropractor at my school which is really cheap. hes done this combo therapy on my neck and slowly getting my neck and back to a place that he can start doing other stuff. its been helpful. but the last few days have been pretty bad. mentally i couldnt take the double meds i was getting confused and couldnt think straight and i still cant but it was so bad. and felt weak and ill and i still do. my hands and feet hurt alot. and this other thing i'm not sure is related whatsoever but my nipples hurt. i decided to drop any dance class and just take the 3 communication disorder classes. i wont be able to handle it at all. maybe i need to move on. its sad. the reason is i was enrolled in a 3 unit intermediate ballet class that i had last semester which i really like the teacher and she would most likely be lenient on me and stuff but i'm afraid i wont be able to catch up at all and it would be too much too fast. if only she had an easier class. but the other dance teacher seems kinda tough. any absence or late or non dress counts. and they are each 1 unit so i would have to take 3 and thats too much. with papers and stuff not worth it.

i really want a maid to come like once a month. i think it would help me a great deal. my husband and i are going to get a car for me. maybe a 98-99 jaguar xj6 or something similar. if we take good care of it in about 20 years it would be a classic. which is always good. we just have to be committed to the repairs. but yeah i need a car to go to school even if its a block away. i'm just too sick. also the doc approved me for a temporary handicapped parking thing, now if i can only find the paperwork he sent me...aye aye aye lyme brain!!!!

Brain Fog

Heth wrote: Every have those days were nothing makes sence or you forget things around you like who is that person or what am i saying?
Feel free to share your funny brain moments. We all understand here. :D


yesterday i was at the mall with my friend and we couldn't find my car. i was for sure my car was in this one area. we ended up going back in the mall to figure it out again. (since there is parking all around the mall). then my friend insisted that my car was to the left but i INSISTED that it was to the right thinking i remembered what the mall layout was. we walked my way and i ended up being TOTALLY wrong! its a good thing i was with a close friend instead of a judgmental one. lol.

actually when i have these moments i get REALLY embarrassed. like i go to a bible study and i hate the prayer time cuz i might have to pray or pray with someone. when i go to pray i forget EVERYTHING i was going to say and stumble over my words and say something like"thank you god......thank you...god....um...you know my heart...sorry i cant remember anything right now....amen."

oh and i'm in love with auto spell check on my computer. otherwise noone would understand me. lol

also. my mind feels like every 6 seconds theres like a hiccup or something where okay i'll give an example. i'm sad so i start to cry and then when the 6 second cycle is ending and the next one is starting i have to remember what was going on so i never baul or cry fully about how i'm feeling cuz i have to keep remembering what is going on. this happened last night.

or i just feel dumb for some reason or like handicapped. i upped my meds and this happened last time i upped them too. so my doc gave me the permission to lower it again if i cant handle it. so i did. and i'm feeling sane again but it still sucks.

i guess its not so funny. but sometimes i laugh at the things that i do. what else can you do right? i'd rather be happy than live in misery.

nauseous today

i feel nauseous today like i wanna gag and i dont wanna eat much. i wondered why but at least its not every other symptom i had! also yesterday i was tired all day and out of it because i woke up several times in the night due to my husband waking up several times. and i got a headache from looking on the computer too long yesterday.

doing the laundry is painful

doing the laundry is so painful! i usually dont do the laundry but i did it today and damn it hurts when i pull that cart of clothes!!!!! then i feel sick. not to mention the heat that makes it much worse! then i wonder if i can really go back to school like this. i'm so limited!

tired but i can take the heat

despite waking up at the usual time today 1200pm i'm pretty tired now at 8pm. weird. i havent been awake that long. and its great news to say that my thermostat is not at 78 degrees! thats amazing because i'm used to having it at least like 72 degrees all the time. my body couldnt take ANY heat. maybe my internal thermostat is regulating finally! lol.

pressure pain is back

the pressure pain is back where i need heat instead of ice and i need massages and desperately want to chop off whats left of my hair so i can apply the HeadOn stuff directly to my scalp. oh joy

update from last blog

so ive done alot of thinking lately. everything i knew i loved i dont enjoy right? well for one thing its only temporary because of my fatigue. and another thing every other day i change my mind about what i'm going to do with my life right now. my mind is wracking over these decisions. do i go to csun and start this new major head on? or go slowly. do i quit csun and go to a community college and take things like creative writing and maybe work? do i pursue more early education degrees? Do i take the things i like such as art and music at csun and possibly create a major? one of the main reasons i'm considering these things is because of control. i want so badly to make money so i can be in control and i need to release the control. i know if i do communication disorders i could be making a decent wage afterwards. or do i pursue just being a wife? learning how to create dishes and do scrapbooking and other things like that just staying home? which honestly is what ive been enjoying much more lately. i feel like maybe this disease has caused me to experience something that i actually love which i never thought i would. maybe my true hearts desire is to be a mother and a wife and not work. thats whats been going on lately at least. having a baby and the desire to be a mom has been popping up alot lately. taking care of my home and such. and my enjoyment comes more out of my imagination than anything else. for instance i just got back from my friends home. shes a mother and a wife and they live in a quaint house owned by her inlaws. she cant really do much with it cuz their renting and her inlaws use alot of the yard for storing equipment and cars (they are contractors) i like their house because well my friend she likes to do some gardening planting herbs and rose bushes, scrapbooking, etc all the things ive been desiring to do. and the thing i like most about their house is that if i lived there i would enjoy it merely because you can imagine so much. if you have a perfect house all brand new and decorated and you can see it with your eyes whats left to imagine or create? youll have to find something else. but there you can do things like plant a rose bush here or place a bench there etc. i dont know if any of this makes sense but it does to me. this diesease has really been a blessing in disguise. i have no hair and can do nothing more than imagine and stare at the stars or go on a short walk or feel the breeze on a warm day or lay in the grass or iron some clothes. its kinda therapeutic. and i dont want to leave it behind to return to the hussle bussle of the busy life that i used to have and everyone else has where they dont have time or care to walk in the park and think of nothing more than how beautiful the leaves in the trees look as they sway against the blue sky.

so back to school. i shared with mike that i just want to be a wife. nothing more. and that i'm torn about what to do. its not really practical yet thats what i desire. he said i could do that just be a wife. and then he suggested a few things where in the end i decided that i will continue my education of communication disorders so that one day when i'm 40 and the kids are in high school or what not i can do something or maybe there will be a day where mike will be out of work or he gets sick and i can care for him by working. so now i'm not going to school so i can finish so i can work so i can make money. and that makes me happy and content.

another thing that bothers me is i have defined myself by the things i enjoy. i never wanted to define myself as a wife and thats all or a mom and thats all. i would cringe at the thought because i want my life to have purpose. i wanted to be a server and help the poor and care for the needy etc. i liked to dance and wanted to be good at it. its hard not to think of those things. and why do i have to go take a class to become a writer or a dancer or an artist? and why do i need degrees in them? i know that came from nowhere but i think about those things only because i think well i enjoy them so i should take classes and then get a degree in them and that is the only way i can do them. i dont make any sense but it ties back to the imagination that ive been developing lately the creativity. it comes from within and i can create in my head and i can write and i can learn all those things without college and on my own even as a wife or a mom. i guess i feel i'm dependent on schooling to learn anything.

im not depressed i just need to redefine who i am and i guess i shouldnt even do that. define myself. just be. and enjoy. thats all there is to life. its weird but thats what this disease has taught me.

Steroids

just a question but has anyone ever felt better when on any steroid? i know its not good for you but last year when my symptoms were starting to debilitate my life one of my docs gave me prednisone for a week and i felt great! too bad it wont do much for me lol.

everything i knew i loved i dont enjoy

i find it so sad that i find more enjoyment in cuddling in my blanket, spending hours ironing clothes and nothing else, laying in the grass staring at a tree while listening to music and staring at the stars than anything i love. i love kids, i love dancing, i love art, etc. but when i do those things i dont have enjoyment anymore. its so sad. i dont know why this is happening to me! everything i knew i was i cant find anymore.

also i get distracted really easily now to the point where its overwhelming for me. like i have ADD or something but i was never like that.

i've been fatigued. i dont know really what to call it. my body is awake but my mind is asleep. in a dream state.

today i walked in the heat with my dog for about 1/4 mile and started feeling a little ill. i think that i'm still sick but i've managed it very well with my different supplements and strategies to fight inflamation and such. i used to push myself through it.

fuck it all!

i'm not awake

last night i had a migriane and went home early. i was kinda out of it because of the head pain migraine like thing. ugh! and i woke up with my head and sinuses hurting. i havent really woken up all day though. i ironed clothes and imported cd's to itunes. when i was sleeping i had alot of vivid dreams. sucky! and now i'm all sleepy and its torture! at least im not in alot of pain so thats good just i cant sleep but i'm defenitely not awake.

MRI

i'm not much better than last year honestly. my anxiety and stress levels are still high despite there being a bittersweet thing to it.

i called my insurance company today to see about the MRI i was supposed to get and found out that there is no preapproval needed. stupid bitch who swore to me that it was needed and it would take MONTHS to get! anyways i'm going to demand stuff now from that office.

i'm bruising alot now. i have about 8 bruises alone on my thighs and now a lump in my left arm that looks like a bruise. i'm having those hypoglycemic feelings again. i'm tired my face feels wiped out like usual and pouring water over it helps for about 30 minutes.

a few times last night my arms would fall asleep but not all the way. quite annoying!

inflamation switching words and stress (generally i'm feeling better)

i'm generally feeing better. i'm using this stuff called BioFreez that my chiropractor gave me samples of for inflamation and I'm taking the Primrose Oil 2x a day.

my anxiety is slightly returning but i think its due to excess energy. i'm switching my words around here and there like yesterday i said bathroom instead of something else completely different.

my stress tolerance level is 0 and my couzin really stressed me yesterday. i feel bad because i want to be there for people who need people but i can't like my ability is not there anymore.

also i decided despite being worried i'm on the wrong treatment plan I will stick with my antibiotics and my doctor in the meantime. when he takes me off the meds a few days will go by and i will relapse. then he will probably try another med when i will suggesst Levaniquin or something like that...

"bad days"

finally got my period! and my gyn apointment is on tuesday. i have inflamation and that flushed feeling in my face, migraines and fatigue. not horrible but i think these are my "bad days" (hopefully!)

food allergy? and no period!

so i'm pretty sure i might have a food allergy. at first i was thinking not but today i got that flushed feeling in my face after eating at the bbq. i ate alot of new things than usual. i felt like my face was swelling and stuff but it wasnt and i was tired. and also the only thing that helped was cool rag on my face and i slept for like 3 - 4 hours in the air conditioned apartment. so i'm going back to the allergist to take the test.

another thing, i still dont have my period. i've been depressed today (probably from being tired) moody and i gained weight so i thought maybe the pregnancy tests were too early so i took another one and it was negative. i mean i would rather i be pregnant than it be something else cuz that would mean i was healthy in that area. it pisses me off that the doctor who took all those tests wont call me back and the staff in his office are incompetent. i think i might just go in and request copies of the records and take the tests to another gynocologist.

chest pain/red dots/strechmarkrashes/allergist

i felt "funny" today. that wiped out feeling for a bit. but i was able to move the living room around, make dinner, sweep, among other stuff. at dinner time my chest was hurting but only around my esophagus and my heart area so mike said it must have been some muscle or something (not my heart). i feel that chip in my throat still. i heard that meant acid reflux not really a chip. i still havent had my period. i go tot he allergist tommorrow and i'm asking for mold testing, and food and other allergy testing. as much as i can get. they did test last time for immune disfunctions (like last year) and i was all good in that area. friday is my LLMD apointment. i'm having nasal dishcarge and head pressure slightly. also i'm seeing more freckle sized red dots in places like my back arms torso and legs. not nearly as many as that one time i broke out. and i'm finding those "Strech mark" rashes around. last week i had 3 on my butt. this week i had 3 small ones on my hip. and now i have on on my stomach.

feeling content

I've had two good days. I'm happy at peace and I'm trying hard not to push myself or get down on myself. I'm feeling content and i have little pain and weakness. i mean I'm not feeling like today i could work or anything without killing myself but I'm feeling like I'm getting there. I'm hoping its not a fluke.

I'm trying to eat better. i really pushed myself on Sunday though when i made one too many commitments (meaning 2 commitments haha) and told myself that i should follow through with them anyways because that way I'll learn to not do that again. i got a migraine that night and felt dehydrated so i drank a glass of water.

i find myself trying to find ways to entertain myself. I'm usually a doer and now i cant do stuff only because of my "SUMMER OFF" thing. i know i need purpose. this summer will definitely stretch me in that way because I need to stick to doing nothing really except relax and have a vacation and get better.

i need to praise God for my health lately. i prayed for him to make me better and told him i would praise him for it every day if he did but I'm still hesitant. that comes with the territory (meaning ME lol).

I'm thinking of doing Communication Disorders program at school so I'm going to a meeting on thursday about it. My husband and I are getting along better now, my sister is still a little upset at me but my mom is not at all (she is always extreme like that though.)

PS: I havent had my period for almost 2 months now. I should know the results of my labs this week (if i call) or at least by my follow up in a couple weeks.

wow today was great. i slept in though which is good. i was able to walk ALOT today and even do a few turns (cuz i like to dance in random places like the bus stop :-)

i'm tired tonight and i think i'm gonna be able to sleep well. i feel like i did before when i worked and i was having a hard time because i was working and going to school and not feeling well at the same time. so thats good. its much improvement.

i think that god might be healing me.

i get this feeling when i take a shower like the blood is pooling in my feet and hands and they hurt alot and feel like i need to shake them and massage them and lift them up instead of standing on them (or in my hands case keeping them down).

another thing i've been still spotting those red dots in random places. my right shoulder has a bigger one (still very small but i was able to take a picture of it before my camera died on me).

along with the feet pain i feel i see like spider veins all in my feet and calves. at first it was just in my right foot and now its in my left foot. so i'm going to bring that up to the doc next friday when i go.

i spent a long time in Michaels' today looking for scrapbooking stuff for my wedding album. i found some cool paper. i got some good ideas. i'm going to take it like one page at a time and i have an idea of what i'm gonna do with the whole thing as well.

i havent done any knitting lately though. but i will in time. i think that scrapbooking is a little funner and slightly more challenging and if i have the energy for it i like to do that instead.

TAKE THE SUMMER OFF!!! is my motto

AT LEAST i'm happy

I cant sleep tonight because of all the things going through my head

anticipation of scrapbooking
maybing talking with my mom again
wanting to dance
wanting to work
wanting to be something more
the apointment tomorrow about my dog with the housing office...eek
the fact that i will probably miss the apointment because if i wake up still tired the rest of the day is shot for me.

i have to tell myself to at least take the summer OFF!!!!!!!!! doing NOTHING!!! i can't take that chance of pushing myself and then i just end up in the roller coaster again. But i dream of what i could do with the money.....basically all related to my health and enjoyment (cuz if i can enjoy somethings then that will improve my health).

Today i made an apointment with the allergist (again) but this time i asked for more than just the regular allergy test. I asked if they tested for food allergies and molds and stuff and that I wanted those as well. So i'm defintely having more confidence.

My tack board is now filled. I dont know if i can fill it any more than it is. The thing is I will notice things much better if they are up there rather than in a pile somewhere. it has actually done me good so far! I look at it a couple times a day just cuz i do that sort of thing. I have a few encouraging things up there as well. so it works out.

okay i was fatigued/ well really more sleepy really today. i have like sharp stabbing shooting pains through my head and neck but its nothing compared what its like usually. I was able to get a few things done, clean up a bunch and relax a bunch. I felt like i made some goals and plans for myself and accomplished things today.

so now i have a few hobbies possibly. so its good.

stuff

i hate writing updates. i know i need to and this is the easiest way to do it for me. I've just been feeling crappy the last few days. with the chiropractor helping the inflammation its good. I'm going to go twice a week for now. i want to get better!! i want to dance again.

okay, well I've been happy, no depression. but if i think about another doctor telling me that I'm depressed i know i would cry because i try and believe the doctor and then i look back at all the things i love to do that i cant do any more then i cry and then the doctor thinks that's reason to believe I'm depressed! aah.

that hasn't happened for a while but never mind.

i went to the gynaecologist yesterday because my period hasn't come for like 40 days and last time it came for a week then it stopped for a week and came for another week. i thought maybe i was pregnant or something, i actually would like that. i mean i dont want to plan for it and it would be hard but I'm noticing myself smiling and talking about babies and stuff instead of being scared of the idea whereas before i would freak. so maybe its just my time to warm up to the idea right? but i had an ultrasound today to look at everything. the doc should get them by Monday.. eek. no sign of pregnancy.

today i felt like crap. sharp pains go through my head and neck. my legs feel heavy. i try and move and i feel more like crap. maybe its the heat. i really should limit my movement. I've been eating much more. and last night my stomach was hurting me and today.

theres more but i don't now what else to say. that's why i should be keeping more track of it.

sore throat. I'm tired alot. i slept like 6 hours i think last night but i was sooo tired today.

forgetfulness/chiropractor/reflux

i'm having a hard time figuring out like what day it is and if i did something that day or not. Like i had no idea i wrote a blog already for "yesterday". which is really today cuz i havnet gone to sleep yet. so i guess thats a symptom. like today i went to the chiropractor and i looked at my phone to see the date. June 15 then i had to use my hands to figure out what number june is. then like a minute and a half later i had to sign one more thing and i asked what date it was again.

so the visit went well. i'm not supposed to say anything but...my insurance will pay only 25 dollars a visit for 12 visits in a year. so the chiropractor is letting that be my payment and then i asked him later what happens if i have to come more than 12 visits and he said i could just pay the 25 like my insurance. yay! score! and hes so much closer than my old chiropractor. so yeah and he does like this wobble chair thing and this vibrating thing that goes on your back and this big clicky contraption and a few adjustments. wow. my back pain was alot better after that. bearable. and he told me about toxins and such and how my back was inflamed just like my stomach and stuff cuz of my ibs and reflux problems.

so new symptom: i feel like theres a chip stuck in my upper esophagus, i looked it up and its like acid reflux but in your esophagus. laryngopharyngeal reflux. i dunno.

back pain

the last two days i've had horrible back/neck pain. it started yesterday when my neck started to cramp like usual but then I got wiped out. its like I tried to stretch my neck and it got worse then I got a migraine had to sleep it was so bad! like i had a migraine in my neck. same thing tonight but its with my back this time. i tried to strech and it made it so bad i had to lie down with ice on my back and even now i have ice on it. the pain radiates outward. like a burning feeling. my stomach gets nautius and i have chills. but i dont have a fever. i slept in till 12 today too. i cant tell if i'm just cycling through symptoms, or i'm getting worse. so basically i'm not able to to things. also both times i ate fatty fast food and then i felt like crap. but i've been eating fast food for a while. its easy, gives me my protien and carbs that i CRAVE! i thought maybe i got the migraine because ive been drinking too much soda and not enough water. So i'm going to stop soda for a while.

also i've started to resort to OLD habits. I'm picking at my face and scratching at my arms with things so i can forget about my pain. its crazy i know. why beat pain with pain? but i'm not depressed. i'm RAW. i'm always at my last straw. i have happiness in things but this disease has stripped me of everything that I knew.
well turning my neck makes it worse. aaah.

sleep problems

i have this thing where i am tired and i go to sleep but i wake up realizing i'm not breathing and i feel my pulse strongly in my head so i get nervous and really wake up and catch my breath. Its probably just sleep apnea as a result of the lyme or bartonella affecting my central nervous system. stupid lyme...

i havent posted all my symptoms lately but there have been some noticable ones but i'm not going to go there.

lately i've been feeling well. not great but well. i'm doing alot more. my apartment is half cleaned up and when i start to feel unwell but i keep going i dont feel worse i feel better. which is a GREAT sign.

I found out another girl I know had lyme for 9 years while she was younger. And I'm bonding with other people with health issues.

Sunday I reluctantly went back to the college group at my old church. There I realized just how fragile and broken I am. Especially with my marriage issues. Accepting instead of denying i think is a good thing for me cuz none of this is going away any time soon.

whats new

I cry more easily now. I'm mad at the world for not believing me.

"the story of my life. the only one who believes in me is YOU. Never ending, what else do you have for me? (referring to the past when my family was against me in high school) Was I wrong to give my life to you? (referring to stepping out in faith and reaching out to people etc.) Always suffer and for what cause? You are the ONLY thing that keeps me going. I want to die but i have hope. And I don't want to die. I fear death and I fear to suffer. Yet I am suffering."

I guess i'm learning things that people will never learn without such a drastic thing happening. But will I use these things that I learn or will i learn never to trust? What do I do when i have kids? Why would I put them on this wretched earth where all I've seen is suffering? And even in the USA when the suffering is the least.

I'm sensitive, fragile, open, learning, reactive, understanding, wise, instense, playful, childlike

never without pain

i cant sleep because of the pain. i'm never without pain. even my heat pad doesnt help.

feeling better

I've been feeling better. Thats all I have to say. For the last few days I havent been able to update because I havent had access to the internet. Besides the stomach pains and migraines i've done alot today and i feel a little better. I was able to clean alot. Oh yea the other day I got in an argument with my husband and I went out. This one lady at the pet shop was very happy. My gloom went away. It's amazing what a messsy enviroment will do to you. I hope I didnt overdo it though because then I'll just crash. Stress on a "good" day will make the rest of the week bad. My lymph nodes under my chin still hurt.

tired / abdominal pain

im so tired.
getting too much sleep now.
i took an epsom salt bath yesterday and felt so bad after. i also took some vitamin c on top of the other stuff i take. i was able to go to the mall with stephanie later in the evening but i still felt like crap there. i was feeling better while driving home but despite taking one benadryl i couldnt fall asleep till 2am. i woke up 5 hrs later to tremendous abdominal pain and went in the living roomwhere i put my heat pack on my stomach. i fell asleep and woke up at 1:15pm. i'm still tired. i stand up and i get dizzy.