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.

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.

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

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?

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.

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!!!!

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.