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?