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.

Today

So i woke up at 6:15am to realize that I needed to go to my doctors office for my 7:15 appointment. Mike was still asleep. I yelled at him to get up because i couldn't get up myself. He was supposed to wake me up cuz i am too ill right now. and he stayed asleep making excuses for his behavior! meanwhile I'm hurt because I'm the only advocate in my life and I'm not doing that great of a job. we got in a fight where i was yelling screaming throwing shoes and hangers around while he tried to sleep. then i left him alone for a while. He woke up and tried to apologize to me but it wasn't good enough.
so then he walked outside to the car while saying "2 minutes" a minute later he sped off. i was so hurt i bawled. then i called him and he finally came back to get me.
I drove him to work so that later i might be able to go to the docs office. I dropped him off and he was being mean to me. anyways it kinda ended okay i guess. then i drove to the grocery store to get a few things. It killed me. oh my gosh it wiped me out. i was achy the rest of the day. i went home and canceled my doc appointment. i had another one close to here for a maybe PCP at 4:30 so that might happen. i watched some movies then my friends came over just in time for me to go to my doc appointment. they cheered me up. well mike called me and said it was cool that they come over for a while and with a sound that made me think that it really would be okay.
went to the PCP to see what help he had. I think i accomplished a couple things with this appointment. 1: made an ally 2: got confidence to ask for things i need 3: realize that PCP's are useless with Lyme.
When I got home with my friends my husband was already there. so my friends and i got some food to bring home. i wasn't feeling hot at all! we got back and he had 3 different bouquets of tulips out. it was so nice. so yeah we made up.
but anyways i felt like shit still. my lymph nodes hurt, my body aches, and my stomach hurts.
i ate a good amount of food and got some rest.
Elizabeth's mom came to pick my friends up and she prayed for me. her husband has the cancer stage 4. but she said to me that it was okay to ask for healing. and she had me try to visualize myself well. The first time it was hard and i couldn't do it. the second time i got to see myself cleaning and not being exhausted like i get on a GREAT day which i haven't had but I've had like an hour maybe on a GREAT day. but when i got to the dancing part i felt heaviness and pain and burning all to break me down i just couldn't visualize it!
and its hard for me to think that its okay to ask for healing because one day we will all die.
so i don't know. my lymph nodes hurt right now. i went with mike to Wallgreens to pick up some Epsom salt and there everything hurt. even the touch of my nail to my ear hurt really bad. i had to walk slowly and crouch over a few times to take the pain.

abdominal pain!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

i didnt sleep at all last night until about 9 in the morning i fell asleep for a few hours. completely fatigued all day. my stomache hurt alot. like a warm feeling. it hurt alot near my upper abdomen. any pressure makes it worse. I feel like i'm constipated and full. But I have gone like 6 times today and its normal stool but its alot. i ate a bagel and cream cheese for lunch. I am peeing alot too. and these feelings have been for quite a few days but its getting worse. i think it might be IBS. i feel like i had surgery on my stomach muscles and when i try to use them i get weak i feel queasy all over but mostly in my abdomen, shakey and get a slight headache. i took a long bath today and just rested in there because of the fatigue. it was hard to get up. my head hurts right now. there is a pain that is just not going away on my lower left abdomen area. i dont know what thats about. hopefully i can sleep tonight. i do want to get better and i think i'm actally geting that point where i cant deny my illness and think it away for the moment. i need to be more agressive in getting the help i need.

my arms fall asleep fast and i woke up several times during my short sleep with my fingers feeling like they were on fire.

Pictures of scab/mole/bruise

This picture is the scab on my leg I was talking about...

Imagine this bruising on my legs.

These two pictures are of moles/freckles I'm worried about...

update/in-laws/what to say

i'm nautious today. i've been having a small round pain on my left side of my stomache. really its lower than that but it hurts especially when pressed on. i have a low tolerance to pain again. my small dog will walk over my stomache and i will yell alout "OW!!!!!!!" it hurts for him to even walk on my arm. I've used HeadAndShoulders and my scalp is still flakey. Theres tiny bumps that hurt probably from scratching my head alot allowing it to bleed. Last week my leg was itching alot and there was a small rash. Its still there with a crusted part in the middle. I'm not sure what to think of it. The petechie is around my body again. I've noticed a little here and there. Not too much. The body pain is less today and I slept okay last night not much waking up. Lately i noticed less blotchiness on my legs. It looked like it was purpleish bruising but not bruising. I don't know how to explain it. But i noticed less. but its not gone.

my step mother in law thinks I'm bipolar and doesnt understand why I wont work. She thinks its unfair that Mike has to go to school full time and work 30 hours a week. I told her that I did it. A lot of people do it. I hope mike understands that and doesnt get in their trap. Its alot for him to be a new husband, live on his own, and take care of his wife all at once. He's never done any of it before. Its not like he has to clean the apartment or pay all the bills. I had to do ALL of it before. Thats what it takes to live on your own. I'm kinda upset he didnt defend me though to his dad and stepmom. But I was not as hurt as i used to be when someone didnt believe me that I was sick. Probably because I have alot of support now, even if it is a message board group!

Another thing, yesterday I walked my dog down the street and ran into an old school friend from last fall. He asked how I was doing and what I was doing. What am I supposed to say to that. I don't have any small talk to give besides whats going on with me! "Hmm. well i'm married and I have lyme disease, I dropped out of school got fired from my job and now I'm trying to recouporate from this disease where i can lie on the couch for a week at a time and do nothing because of tremendous fatigue or pain! Oh and I went out the other day, yay, cuz i never do that." HOW BORING and weird! So i didnt say any of that. "I'm walking, getting this thing here" We were at 7/11. "then i'm going home!" "great you still living at home?" "no I'm married now" "cool" "oh yeah congratulations" "thanks" And because i was so uncomfortable mainly because of my hair we stopped talking and i turned around to look at something and then he was gone. great! So how am I supposed to give hope to people when i'm like this?

Bone crushing pain

I have officially transitioned from the horrible head pain stage to the bone crunching pain. I awoke several times where it felt like the bones in my neck were painfully grinding on eachother. I have pain in my bones down to my toes. Every bone every part of my body. It sucks. I got a massage today which helped a little bit. I cant wait until I can do this Indian detox thingy. It costs alot so I'm going to wait until we pay off our credit cards. We should have that done by October. Birthday present???

Live as if you were dying.

I did ALOT today. But the feelings of death and doom still plague me. Today I finished the rest of the dishes, vacuumed the living room, ironed about 2 loads of clothes, walked a bit, alot. i also went out to dinner and after went to Sarah's to soak in the jacuzzi. i got home around 12:30am.

last night i went to see Pirates 3 and almost near the end i had a panic attack. I thought I was going to die. I guess the idea of death scares me. i couldn't shake it. knowing that Elizabeth's dad now has stage 4 cancer worries me that i could have something serious and die. But i did some research and knew that if I was going to die any time soon I would be peeing less (which I've been peeing more) my hunger would go and i would probably have dry lips. All which I don't have. But still, I might live a short life. and everyone says to live as if you were dying, or today was your last day.

I watched a podcast from mosaic church about Jeremiah and his purpose. Anyways I got out of it that even if i was dying tomorrow God has a purpose for me in that. Studying this has given me more hope, not for life but for purpose, and life after death. And I know that God uses hardship not for healing in a visual or practical form but in a supernatural form.

all i know is I am definitely learning and growing closer to God every day through this trial, maybe the growing closer is God's purpose in all this and maybe I will die young. Maybe I will live a long and fruitful life, but if I take one thing from all of this it is what I've learned today. Anyways, death is a real thing and I can't run away from it. If I don't die tomorrow or any day from this illness, I will die from a car crash, another illness, murder, accidental death, or natural causes. I cannot escape it. I must face it. And I can't hold onto this life forever. God has given me today to enjoy and give hope to those around me.

If I got better...

If I got better what would I do? This is a hard thing to think about for a couple of reasons. What if I don't get better. If I don't get better I'd like time to think about what I should do with my life, how long I will live, and go through the grieving process early. I'm that kind of person. I like to get things done fast so I can move on and not waste another day...Another question...How old will I be when I get better? Will I be fully better or will I have a number of difficulties after this disease? But I think it's good to note what I would do if I did get better because I don't want to get better and forget everything I learned about life.

Okay so I will start a list of things I would do if I got better:

1) Dance, learn dancing, not competitive or stressful, but for fun.
2) Adopt
3) Travel to third world countries and help distribute food or clothing.
4) Finish a drawing and a color theory class so I can paint better.
5) remember that maintaining a beautiful home for it's own sake is not that important to me. (i forget sometimes)
6) Advocate for chronic illness and infections. and spread good information and uplifting information about them.

Would I continue with school? Why? Should I continue with school? Why? I dunno what to do...

What would you do?

When I was first sick...

This is a picture in December of 2005 when I was first having symptoms. I started having weird cravings so desperate that I would get a headache if I didn't get it. I had to have a hamburger with just ketchup and a bun and if i had sugar it was a problem. later my cravings were for chocolate frozen yogurt. One person said it was hypoglycemia. Even later it was iced tea and pickles. It was driving me up the wall! I used cool packs to help with the migraines.

My friends and I made a joke out of it. We called our small group "Pretty Corny" because I had corn on my head. haha. Who knew I was really sick?

joint pain fatigue constipation

okay so the joint pain is starting. elbows and knees. yippee. and i'm soo fatigued today. i hadn't really noticed it but i was probably fatigued for a while. and i was constipated yesterday.

Routines

I think I might start a routine. A night routine to go to bed. A morning routine to wake up. A day routine consisting of taking a run with my dog, doing a chore, working on my to do list, and down time. I could also set a specific time in the afternoon or whatever for things i do when I have to go out of the house for something ie: doctor appointment.

I didn't get much sleep last night. But blogging helped me be more at peace with myself.

Focusing on my routine might help me to get in the direction of having a productive and normal life one day instead of putting myself down that I am not already there. Plus if I have a routine then I can be on my way to rehabilitation in exercise as well.

Things I've learned / Thoughts / Worries

Things I've learned so far:

#1 It's okay to have dishes in the sink and a few more on the side
#2 It doesn't matter where I move or when I move or where I live. Take me anywhere.
#3 Ideal beauty is a lot easier to disregard when you shave your hair off.
#4 Take it one step at a time, don't push yourself, look at the progress you've made so far.

Things I need to learn:

#1 Even though I'm a cracked jar of clay, i have value on the inside.
#2 Ideal beauty is irrelevant.

I've been able to do more lately. I've used my nasal spray twice a day now so that might be helping with my headaches. I've ran a bit. Not much though. just little spurts when I'm taking those 20 minute walks with my dog. I've cleaned the bathroom some done dishes, made breakfast, gone out a few times. Theres less pain, but I'm still weak. i can feel it. I guess I can say I know my limits. Its these times where I doubt my illness. I think why i can't push myself, why I cant work, or clean, or other things. Tonight I got a little depressed.

I'm thinking about the future and I wonder if I will still have this thinking problem then. I feel so dumbed down. Its just too much for me to have a schedule, pay bills, remember more than one appointment in a week. I used to be smart, quick, I could handle like 5 tasks at once. My schedule was filled to the brim.

Another thing I worry about is if I get on SSI will my chances for adoption be less? I'm not a suitable mother because of this? I don't know. Especially if I win because of a mental illness instead of my physical illness.

I can't worry about stuff anymore, for example, if I think about a bill we have to pay ie: the possible bill from the ER from like 3 months ago, or our car payments that have to be dropped off at the bank every month, I stress out, it takes a big toll on me. And if i begin to write down a list of the bills I have and things I need to do and I can accomplish to realize all those things on paper, one would think the things to do would be less daunting and less stressful. I've exhausted much of my energy probably a third on a good day, 2/3 on a bad day, on the list alone. Will I spend my whole week on this list of things and spend no time on things to improve myself esteem, happiness? My life would be wasteful, and worthless, and unhappy. Some people don't understand this. But the Spoon Theory explains this quite well.

also i was able to read a couple short chapters in a novel. But now i have this new thing where I'll read like a page worth of words and I didn't take any of it in. I've never done that before.

Another thought I have is if I ever get better maybe working with the elderly and dying or chronically ill people maybe as a social worker or something. But then I think about elderly people and how as you grow older the more stuck in your ways you are. So maybe not...

Life...

today i felt much better. though i had a pretty bad headache. I went to my doc this morning. i managed to ask one question "how long will it be before i get better?" he said at least another year. I requested copies of my records there. Turns out I think, that he already took a bunch of the tests I wanted, ANA, complete blood thyroid, etc. I'll look it over.

I slept for another 3 hours when i got home. I felt pretty ill, stomache hurt, head hurt. but after a while i felt better. though i really didnt do much.

later in the evening around 8:30 i felt better. Mike and I walked at 10:00 about a mile both ways to Del Taco. We took the dog. I ran a little back. Feels good.

anyways, i'm thinking I should start takking note of the things i've been learning so that I wont forget.

other news doesnt relate to my illness but with the other stuff going on:

mike went to work and is using his other arm to serve. (hes a waitor)

my dog got allergy shot and hes doing better.

my mom hates me for ratting them out about my sister. but i have a lot of people encouraging me saying i did the right thing. its still hard though.

oh and i notice that even though my symptoms are pretty much to the same degree i have less symptoms than when i first saw my doctor.

i'm looking into hiring a medical malpractice lawyer for against my previous doctors now that i have blood tests.

and i am going to start the process for SSI soon.

And I was feeling like i was pushing people away and losing friends quickly but I ended up reconciling a close friendship.

Thus is life...

how i'm feeling

So today was a better day, for me at least. I'm worried about my dog, and my sister, and my husband.

my dog has been acting funny lately, sick, lethargic, moody, etc.

my sister got head butted my my step father (shes only 7 years old) i called social services.

my husband found out his arm has a fracture in it from his bike fall last friday.

for me i have been more positve, my head doesnt hurt too bad. but wigs are at least 100 bucks and i am small so i only fit in kids wigs but those are too tight so why bother? and i got an application for SSI and filled out forms to get copies of my health records at one doctor. yay! progress.

but i'm having a hard time getting in the mood. with my husband you know? poor guy. first my period lasted 2 weeks then i was in pain and now i just dont want it. i dont know why. maybe i'm still in pain. someone once told me that with this kind of pain you forget you have it and you get used to it but its still there. i get that one.

Nausia and update

I was nautious today. had a headache like no other. nothing helps it. stretching helped a little today. i was able to walk a bit. run a few errands now that we can drive our car again. Considered moving to Oregon and Mike was up to it.

Here's some questions i'm going to ask my doc this friday:

1) I’m concerned that my illness is not Lyme Disease. Is there any chance it could be something else? Have we exhausted all other possibilities? (autoimmune diseases, viruses, cancer, Rheumatoid diseases, other infectious diseases?)

2) What do you think of the Marshall Protocol? Rife Machine?

3) How long do you think it will take before I get well?

4) Is there anything else I can do for the pain? My head is hurting so bad. I’ve been using “Head On” and Excedrin and Tylenol and Advil. It barely helps. I even cut all my hair off.

walking my doggie and collapsing!

I walked i think about 2 miles to a burger place (i was trying to find a wig shop which wasnt there!) and 2 miles back. my dog isnt trained well enough yet and i was getting realy pissed that he was pulling alot on the leash. it was hurting me. i was in so much pain. my neck and spine and really all my joints, everything was hurting but the most was my neck and back. i finally got home and met my husband. we were locked out of the apartment and i fell to the ground and closed my eyes. didnt move for about 10 minutes. When will this all end???????????????

i cut my hair - i need a wig

i cut my hair really short almost shaved last night cuz my head hurt so bad that i really needed to rub the anesthetic thingy on my head. so i'm going to find a wig of some sort.

the pain the pain, it wont go away!!!!!!!!

What happened at the doctors...

doc said that the high dose of zithro was causing my psych problems. referred me to a family therapist was hesitant thought because she is prob not covered under insurance. asked front desk about MRI and they said it was all insurances making a new protocol as of nov of last year making it harder to get tests like that. doc said to stop zithro for 2 days and continue for a week with 250 1x a day again and that i would go back on biaxin on Friday. he didn't order any blood tests yet. got scared to ask him also confused in my head. i trust my doctor though. he does want to see me a lot to see my progression. i forgot to tell him about applying for ssi though. and i forgot to tell him about my period. i told the nurse though. i still have it. I'll say something Friday if i still have it.

another note: mike fell riding the bike to work today and scratched up, possible small fracture and bad bruising in leg. maybe he'll understand me a bit more.

doc apt tomorrow

i'm going to the doctor tomorrow and im going to ask for some testing. what should i ask for? i'm willing to pay up to 1000 because we got a tax refund.

Convo with Mike!

L4Courtney (11:57:46 AM): hey mike, this is courtney from the lyme group
MB58SC (11:58:02 AM): Oh hi Courtney, how are you?
L4Courtney (11:58:05 AM): okay
MB58SC (11:58:18 AM): Are you lying to me?
MB58SC (11:58:33 AM): :-)
L4Courtney (11:58:39 AM): yeah
MB58SC (11:59:00 AM): I figured. It's alright. I know it's hard.
L4Courtney (11:59:12 AM): hold on im' taking to my husband on the phone
MB58SC (11:59:47 AM): S'ok. I only have a minute to talk though, so we might have to continue talking later.
MB58SC (11:59:55 AM): Roomie needs the PC. Unless of course you wish to call.
MB58SC (12:00:08 PM): E-mail is sbauzys@comcast.net
MB58SC (12:00:11 PM): That way too, if you wish.
L4Courtney (12:00:16 PM): yeah i just wanted to know about those good doctors in cali
L4Courtney (12:00:27 PM): that person bob that wrote
L4Courtney (12:00:32 PM): thats my old roomie stephanie
MB58SC (12:00:44 PM): Oh, ok, what's your e-mail address, and I'll send you what I have.
MB58SC (12:00:46 PM): Oh really?
MB58SC (12:00:49 PM): She was pretty upset.
L4Courtney (12:00:48 PM): yeah
L4Courtney (12:00:53 PM): she has her own issues
L4Courtney (12:01:04 PM): L4Courtney@gmail.com
MB58SC (12:01:10 PM): I feel for her, I feel for you too - sympathy isn't going to get us well though, but I understand.
L4Courtney (12:01:15 PM): yeah i keep flipping out
L4Courtney (12:01:21 PM): last night the night before
L4Courtney (12:01:50 PM): i feel stressed because i cant support myself and i need others but they cant read my mind and its really not fair to them
MB58SC (12:01:56 PM): That's unfortunately part of this illness. It makes you raw and snap. Irritation and frustration tolerance are like "zero."
L4Courtney (12:01:52 PM): anyways
L4Courtney (12:02:07 PM): and its harder cus i'm confused in my head alot
MB58SC (12:02:17 PM): What you've said makes perfect sense.
L4Courtney (12:02:29 PM): like i cant think linear steps to stuff simple stuff
L4Courtney (12:02:32 PM): its too much for me
MB58SC (12:02:38 PM): It is hard to allow yourself to be dependent on others -- I had a horrendous time for a long time.
MB58SC (12:02:58 PM): Right, it's as if the channel keeps changing to something random or nonsensical before you can connect the parts.
L4Courtney (12:03:04 PM): yeah
L4Courtney (12:03:13 PM): its like static
MB58SC (12:03:42 PM): What I'm going to do is send you the list. I would recommend you research each doctor on the list by putting their name thru Google or Yahoo. You can read my notes too, but it always brought me comfort to read up on the doctors myself.
L4Courtney (12:03:38 PM): anyways i just love the gropu
L4Courtney (12:03:48 PM): yeah i do that
MB58SC (12:03:57 PM): I'm glad you do, we love ya too -- we are sorry that you are apart of it, and yet grateful.
L4Courtney (12:03:59 PM): haha
L4Courtney (12:04:46 PM): have you heard about that ionic foot detox thingy?
L4Courtney (12:06:10 PM): my husband saw your myspace picture and was like "why do you have that guy on your myspace???" haha
L4Courtney (12:06:24 PM): cuz you have that body builder on there
MB58SC (12:06:28 PM): I've heard of a lot of things, and the one thing 99% of them have in common is they're all useless, consumer gouging, and often unproven.
MB58SC (12:06:34 PM): Uh, that isn't me. *lol*
MB58SC (12:06:49 PM): I'm going to look like that eventually I suppose, but that's just my "goal" picture.
L4Courtney (12:06:56 PM): how do you have energy to work out though?
MB58SC (12:07:06 PM): I don't. *lol*
MB58SC (12:07:17 PM): I don't heal well at all, like you I'm exhausted most of the time.
MB58SC (12:07:25 PM): I'm a brute beast spiritually though.
L4Courtney (12:07:39 PM): :-)
MB58SC (12:07:47 PM): I just hammer my body to shit and go thru a lot of pain -- but trust me, I don't advise it that's for sure.
MB58SC (12:07:57 PM): Because eventually even I've broken down physically.
L4Courtney (12:07:58 PM): aye thats what i've stayed away from
MB58SC (12:08:07 PM): Smart move.
L4Courtney (12:08:09 PM): any kind of physical activity cuz it always results in more pain
MB58SC (12:08:16 PM): If you can fight in another way, it's better.
MB58SC (12:08:39 PM): I'm learning new ways, because I'm finding that my adrenaline and cortisol and stress hormones are thru the roof.
MB58SC (12:08:52 PM): This will not get me well, even if it's keeping my mind and will power alive.
L4Courtney (12:08:57 PM): yeah
MB58SC (12:09:08 PM): So striking a balance is important, but never becoming complacent.
MB58SC (12:09:12 PM): I sent you a long list.
L4Courtney (12:09:12 PM): thank you so much
MB58SC (12:09:19 PM): You'll find notes on the ones I could get notes on.
L4Courtney (12:09:23 PM): thats so awesome
MB58SC (12:09:29 PM): Jessicas recommendations were good.
L4Courtney (12:09:35 PM): yeah i'm still worried though
MB58SC (12:09:41 PM): So those are worth considering while reading the list.
MB58SC (12:09:45 PM): What are you worried about?
L4Courtney (12:09:43 PM): first of all we dont have money
MB58SC (12:09:56 PM): That's a big problem of course.
L4Courtney (12:10:06 PM): second of all i want to see someone that will sit down with me for a while and give me alot of tests
L4Courtney (12:10:13 PM): just so i have them
MB58SC (12:10:23 PM): Right, that makes good sense to me.
L4Courtney (12:10:30 PM): and maybe they can be covered with that health credit card you can apply for
MB58SC (12:10:40 PM): I have a few suggestions.
L4Courtney (12:10:38 PM): that way i can get it
L4Courtney (12:10:40 PM): yeah?
MB58SC (12:10:50 PM): You finish your comments, then I'll tell you mine.
L4Courtney (12:10:52 PM): i did
MB58SC (12:11:11 PM): Ok.
L4Courtney (12:11:14 PM): oh yeah
MB58SC (12:11:23 PM): First, I suggest if you haven't already done so -- apply for social security and medicare.
MB58SC (12:11:27 PM): You are disabled.
L4Courtney (12:11:26 PM): maybe work with a doctor close to me
L4Courtney (12:11:32 PM): yeah i called an attorney today
MB58SC (12:11:43 PM): This is not pleasant to hear obviously, but it's the facts.
MB58SC (12:11:55 PM): Good, a social security attorney can help push the papers thru.
L4Courtney (12:12:08 PM): and he said that i have to be not working for a year or have a doctor to say that i wont get better
MB58SC (12:12:13 PM): Pick up the papers at your local SSI office. Also in CA, they have state insurance too -- like a Medicaid program.
L4Courtney (12:12:14 PM): yeah
MB58SC (12:12:20 PM): File the paperwork with them too.
MB58SC (12:12:27 PM): There are two main things this will give you.
L4Courtney (12:12:27 PM): i know all the services i look into require me to start with ssi
MB58SC (12:12:44 PM): A steady paycheck so you can eat, and pay the rent.
MB58SC (12:12:52 PM): And second: Full medical coverage for almost "everything."
MB58SC (12:13:11 PM): With both, you have a good chance of recovering your health and decreasing a lot of stress.
MB58SC (12:13:16 PM): That's my first suggestion.
L4Courtney (12:13:24 PM): the attorney said i have to start the filing on my own and then have him help with the appeal
L4Courtney (12:13:30 PM): should i call another attorney?
L4Courtney (12:13:38 PM): i have a history of depression
L4Courtney (12:13:42 PM): so thats a plus
L4Courtney (12:13:49 PM): from my high school hate my family days
L4Courtney (12:13:59 PM): haha
MB58SC (12:14:13 PM): With your current testing and doctor -- you should be able to get disability without trouble.
L4Courtney (12:14:16 PM): okay
MB58SC (12:14:24 PM): File yourself. Keep the lawyer on the backburner.
L4Courtney (12:14:36 PM): thanks
MB58SC (12:14:44 PM): Second, when you read the list of doctors I give you -- write up a biography summary of less than one page.
L4Courtney (12:14:51 PM): of me?
L4Courtney (12:14:58 PM): or them
MB58SC (12:15:29 PM): Yes, and include the basics of your case, including symptoms, diagnosis, and the doctors you saw and their phone numbers.
L4Courtney (12:15:52 PM): all the doctors? from my past or the ones i will see
MB58SC (12:16:22 PM): E-mail the doctors on the list who have e-mail addresses. First send a short e-mail regarding you having Lyme and ask if they'd be willing to help you -- keep it short.
MB58SC (12:16:39 PM): If it's excessive -- the number of doctors -- just include those you currently work with.
L4Courtney (12:16:46 PM): ok
MB58SC (12:16:55 PM): I have found that doctors who have e-mail addresses tend to be far more willing to help patients than other doctors.
MB58SC (12:17:10 PM): Second. In my opinion -- avoid hoslistic doctors and alternative doctors initially.
L4Courtney (12:17:14 PM): ok
L4Courtney (12:17:22 PM): even chiropractic work?
MB58SC (12:17:43 PM): You need "medical" care -- standard medical care, to confirm diagnosis with "science" or at least, as close to scientific as you can get -- then....use supplemental integrative care to support treatment.
L4Courtney (12:17:48 PM): ok
MB58SC (12:17:54 PM): Chiropractics is ok if you're already doing it, but don't expect it to heal you.
MB58SC (12:17:56 PM): You get the point.
L4Courtney (12:17:55 PM): yeah
MB58SC (12:18:05 PM): People say all kinds of crazy things.
L4Courtney (12:18:06 PM): thats for sure
MB58SC (12:18:29 PM): If you take this herb, you'll cure AIDS, or if you get Chiropractic care your immune system will suddenly be able to kill Lyme etc.
MB58SC (12:18:47 PM): Ignore all the hype, focus on a diagnosis and testing first.
L4Courtney (12:18:45 PM): i was seeing a chiro and he was so on the side that md's were bad and the spine was good. but i was still not well.
L4Courtney (12:18:54 PM): but it did help with my back when it would go out
MB58SC (12:19:30 PM): Chiropractors are useful, like many integrative therapies, but they can't compensate and replace standard scientific principles without handling the pathogenic cause.
L4Courtney (12:19:46 PM): i'm nervous going to a doctor like you do and telling them i want this test and that test and to work with this doctor cuz i hired them too
MB58SC (12:20:01 PM): You should be nervous.
MB58SC (12:20:09 PM): Because most are going to basically tell you to fuck off.
L4Courtney (12:20:10 PM): plus all of this is so personal to me i hate talking about it cuz i dont want to be shut down
L4Courtney (12:20:15 PM): yeah
MB58SC (12:20:24 PM): Thankfully, the list I give you -- they won't tell you that.
L4Courtney (12:20:24 PM): okay good
MB58SC (12:20:52 PM): These people on the list, most of them are competent, but you must confirm that to be true since I just gather names of physicians who treat Lyme. I don't necessary know who is good or bad.
MB58SC (12:21:00 PM): I know some, but that's only because I got patient notes.
MB58SC (12:21:11 PM): At any rate, you get the point.
L4Courtney (12:21:12 PM): i used to be a cheerleader but i guess i needed that push from someone to do these things, :-)
L4Courtney (12:21:14 PM): thanks so much
MB58SC (12:22:02 PM): You're welcome. Do it for your future family, yourself, your husband -- do it for .....some reason. Just do it and get well -- because you've got to fight this war if you want to win.
MB58SC (12:22:36 PM): If you need to talk, talk -- e-mail me, Jess, or anyone on the group -- if you need to flip out, call us -- if you need information, ask.
MB58SC (12:22:41 PM): We're here to serve you.
MB58SC (12:22:53 PM): And hopefully you'll return the favor once you're improving.
L4Courtney (12:22:57 PM): yes defenitely
L4Courtney (12:23:04 PM): thanks so much
MB58SC (12:23:19 PM): I have a few last suggestions.
L4Courtney (12:23:22 PM): ok
MB58SC (12:23:30 PM): Your worst symptoms -- what are they present?
MB58SC (12:23:31 PM): Top 5
L4Courtney (12:23:55 PM): malaise/feel depleted
MB58SC (12:24:10 PM): Exhaustion/Fatigue
L4Courtney (12:24:09 PM): head pressure
MB58SC (12:24:16 PM): Chronic Fatigue in other words.
MB58SC (12:24:22 PM): Migraine like?
L4Courtney (12:24:23 PM): not really
L4Courtney (12:24:28 PM): it turns into it
MB58SC (12:24:47 PM): Just pressure, like the inside of your skull is going to just explode from the inside out.
L4Courtney (12:24:47 PM): depression/anxiety
L4Courtney (12:25:19 PM): pressure all over my scalp from my neck to my eyes even a massage helps a little
MB58SC (12:25:33 PM): Got ya.
L4Courtney (12:25:28 PM): with pain
MB58SC (12:25:49 PM): I suspect Insomnia must top the list?
MB58SC (12:26:01 PM): Poor quality of sleep, etc.
L4Courtney (12:26:01 PM): yeah
MB58SC (12:26:11 PM): And last but not least?
L4Courtney (12:26:31 PM): um
L4Courtney (12:26:38 PM): currently right?
L4Courtney (12:26:44 PM): cuz it'll change in a few weeks
L4Courtney (12:26:46 PM): haha
L4Courtney (12:26:49 PM): um
MB58SC (12:26:57 PM): Of course, -- I mean through it all.
L4Courtney (12:27:07 PM): oh through it all what are my top 5?
L4Courtney (12:27:11 PM): or right now
MB58SC (12:27:20 PM): Whichever you prefer.
MB58SC (12:27:22 PM): The worst....
L4Courtney (12:27:29 PM): pain lots and lots of pain everywhere
MB58SC (12:27:42 PM): Got ya.
MB58SC (12:28:11 PM): Fatigue, pain, insomnia, psychiatric problems, and?
MB58SC (12:28:21 PM): Heart, joints, intestines?
L4Courtney (12:28:28 PM): i get rashes and i cant hear right and i'm sensitive to the light and my vision goes in and out of blurriness i also have heart flutters
L4Courtney (12:28:32 PM): migraines
L4Courtney (12:28:37 PM): lately
MB58SC (12:28:43 PM): Ok, got ya.
L4Courtney (12:28:41 PM): they went away for some time
MB58SC (12:28:47 PM): That's Lyme alright.
MB58SC (12:28:57 PM): Alright, here are my suggestions.
L4Courtney (12:29:06 PM): tinglinng in my fingers
L4Courtney (12:29:11 PM): oh sensitivity to heat
MB58SC (12:29:18 PM): Focus on getting the diagnosis firmly situated and getting together with a competent Lyme treating physician.
L4Courtney (12:29:15 PM): thats like #2
MB58SC (12:29:43 PM): Focus on SSI, file that and the state insurance paperwork once you have clear support from your doctors.
MB58SC (12:29:52 PM): One of your doctors currently will support you in your disability?
L4Courtney (12:29:53 PM): I have dr gonzalez in thousand oaks hes an llmd but i'm irritated that i havent gotten all the testing
L4Courtney (12:29:58 PM): i dont know
MB58SC (12:30:11 PM): What has Dr. G said to you?
L4Courtney (12:30:12 PM): im scared to ask if he would support me
L4Courtney (12:30:23 PM): hes treating me for lyme i have bartonella
MB58SC (12:30:33 PM): Does he treat you kindly?
L4Courtney (12:30:31 PM): yes
MB58SC (12:30:39 PM): Does he show you respect?
L4Courtney (12:30:36 PM): hes so nice
MB58SC (12:31:03 PM): Does he answer his own telephone?
L4Courtney (12:31:01 PM): no
MB58SC (12:31:10 PM): He has office staff.
MB58SC (12:31:28 PM): I know Dr. G -- or at least "of him."
L4Courtney (12:31:28 PM): office staff yes that are nice but kinda i dunno
MB58SC (12:31:39 PM): He's a competent physician from what I understand.
L4Courtney (12:31:35 PM): the nurses are so nice
MB58SC (12:31:42 PM): Is he far away?
MB58SC (12:31:46 PM): Or local?
L4Courtney (12:31:43 PM): 45mins only
MB58SC (12:31:54 PM): That's local for a Lyme physician.
MB58SC (12:32:03 PM): Ok, you really already are situated then with a physician.
MB58SC (12:32:11 PM): Next on the list is getting what you need.
MB58SC (12:32:17 PM): To get what you need, I suggest writing it.
MB58SC (12:32:25 PM): You're too sick to remember everything during an appt.
L4Courtney (12:32:31 PM): what bugged me was that i asked to fill out some papers for school so i can get a withrdawl and he said to sit down with a nurse and fill it out together
MB58SC (12:32:37 PM): I also suggest bringing someone with you who is vocal and supportive.
L4Courtney (12:32:41 PM): i called the office and they kinda got bugged at that
MB58SC (12:32:54 PM): Did they? What did they say to you?
L4Courtney (12:32:52 PM): asked me if i can fax it and i told them what the doc said
MB58SC (12:33:05 PM): Or how did they say it I guess I should ask.
L4Courtney (12:33:05 PM): and i went in yesterday and an assistant filled it out
L4Courtney (12:33:26 PM): and i overheard them saying that it was kinda bugging them that they had to be so detailed
MB58SC (12:34:01 PM): Did you feel it was personal, or that they had to be be detailed in the paperwork.
MB58SC (12:35:21 PM): What I do is write monthly reports to my doctors. I'll send you a copy and you may copy it if you wish. I type it out and either e-mail it or hand it to them.
L4Courtney (12:35:18 PM): i dont think it was personal but they are the same ones saying that it will take months to get approved for an MRI
MB58SC (12:36:01 PM): It sounds like you'll need to work with Dr. G most of the time then. I'll give you another tip.
MB58SC (12:36:07 PM): Find out if Dr. G has an e-mail address.
L4Courtney (12:36:03 PM): and the doc said to SIT DOWN WITH A NURSE not have the paperwork filled out by the front desk. he made that clear to me which i made it clear to them
L4Courtney (12:36:07 PM): yeah thats good
MB58SC (12:36:38 PM): When you call to talk to the doctor -- you have to bypass the office staff, especially if they're short, annoying, or otherwise rude.
MB58SC (12:36:52 PM): To do so, when you call, simply say "I need Dr. G to call me back, may I leave a message?"
MB58SC (12:37:12 PM): They'll say "who are you, birthdate etc..." Then they'll say "What's this about?"
L4Courtney (12:37:17 PM): so annoying
MB58SC (12:37:32 PM): And simply say "Test results, or ... symptoms."
MB58SC (12:37:36 PM): Something vague basically.
MB58SC (12:37:44 PM): They'll then ask for your phone number and he'll call you back.
MB58SC (12:37:51 PM): Then you have a direct link to him, not them.
L4Courtney (12:37:47 PM): i hate it when office staff want to know details in oder to see if its important enough
L4Courtney (12:37:52 PM): cool
L4Courtney (12:37:54 PM): sounds good
MB58SC (12:38:19 PM): What you'll need to do is write down everything that's on your mind, then simplify it on one sheet of paper.
L4Courtney (12:38:16 PM): yeah i did that once because i was really pissed at my previous doctor and i wanted to talk to him directly
MB58SC (12:38:24 PM): Always keep it to one sheet.
L4Courtney (12:38:22 PM): ok
MB58SC (12:38:54 PM): Each appointment, you can list, meds, symptoms, lifestyle [what you've been able to do or not do daily], and questions, concerns etc.
MB58SC (12:39:07 PM): On this paper, you will write everything you have told me, but keep it brief.
L4Courtney (12:39:09 PM): ok
MB58SC (12:39:23 PM): When you see him, hand him a copy. You keep one in your hands, and he keeps one in his.
MB58SC (12:39:37 PM): Then you follow what you wrote and tell him how you feel, what's going on, what your questions are etc.
MB58SC (12:40:11 PM): On that paper, tell him "I have felt uncomfortable working with your staff. I am uncomfortable not investigating my situation with further testing and I'd like to have more testing done.
MB58SC (12:40:18 PM): You can not simply say "I need more testing, test me."
L4Courtney (12:40:21 PM): ok
MB58SC (12:40:27 PM): You must write down which tests you think would be useful.
MB58SC (12:40:36 PM): To find out which tests are useful, you ask the group.
L4Courtney (12:40:38 PM): yeah
MB58SC (12:40:45 PM): Then you ask him what he thinks and what tests he thinks would be useful.
MB58SC (12:40:47 PM): You collaborate.
MB58SC (12:40:59 PM): You must work together, not simply be a patient.
MB58SC (12:41:13 PM): This takes time and work to get used to, but we can help you do that.
MB58SC (12:41:22 PM): Dr. G will likely respond positively as a result of this organization.
L4Courtney (12:41:20 PM): what do you think about allergies and allergy shots
MB58SC (12:41:42 PM): I think you should be allergy tested for various antibiotics if possible.
L4Courtney (12:41:51 PM): i went to an allergist because of my symptoms and they were giving me allergy shots
MB58SC (12:42:17 PM): They thought you were sick with allergies originally?
L4Courtney (12:42:25 PM): but i stoped them because i was worried that it would interfere with other treatment and maybe my allergies were a result of whatever is wrong with me
MB58SC (12:42:44 PM): Allergy shots shouldn't hurt you -- but unless you have actual allergies to dust or dander or whatever else you come in contact with -- you don't need them.
L4Courtney (12:42:42 PM): my first doctor i made him send me to an allergist cuz i was sick all the time
L4Courtney (12:43:14 PM): pills that they give you didnt take my symptoms away so they started the shots
MB58SC (12:43:22 PM): Chances are if the allergy like symptoms come and go when other symptoms wax and wane -- it's your illness causing them.
MB58SC (12:43:54 PM): Allergies are common among tick spread illnesses, especially Lyme.
L4Courtney (12:43:53 PM): i feel like its just another thing i have to do that i cant
MB58SC (12:44:11 PM): Did they make you feel better?
L4Courtney (12:44:10 PM): thats what i thought but dr g said to keep doing the shots
MB58SC (12:44:15 PM): The shots...
L4Courtney (12:44:20 PM): for a short time i thought they did
MB58SC (12:44:31 PM): And then they didn't?
L4Courtney (12:44:39 PM): well i just think it was the lyme changing direction
L4Courtney (12:44:47 PM): and now its back to that area
L4Courtney (12:44:51 PM): the head pressure
MB58SC (12:45:03 PM): Well then, listen to your body. You don't have to take anything you don't want to.
MB58SC (12:45:11 PM): Especially if it didn't work the way you think it should have.
L4Courtney (12:45:26 PM): i asked the allergist if allergies could cause that head pressure and he said no
L4Courtney (12:45:38 PM): thats when i worried about it
MB58SC (12:49:08 PM): What you're describing is very familiar to all of the patients on the forum.
MB58SC (12:49:19 PM): Clearly having confirmation and evidence to support a diagnosis is important.
L4Courtney (12:49:26 PM): yup
MB58SC (12:49:35 PM): If Dr. G says you have Lyme, assume it's true -- but persist and requesting further testing to exhaust other areas.
MB58SC (12:49:42 PM): I sent the template.
MB58SC (12:49:49 PM): Use that structure to help you get organized.
L4Courtney (12:49:58 PM): thats what i want to do , ehaust other areas. thanks
MB58SC (12:50:02 PM): Keep copies of every one of these updates you write.
L4Courtney (12:50:03 PM): oky
MB58SC (12:50:16 PM): Think you can do this?
MB58SC (12:50:26 PM): It takes courage to say what you need and want to a doctor.
L4Courtney (12:50:34 PM): yeah i think i can
L4Courtney (12:50:51 PM): if i write it out can i email it to you to see before hand?
MB58SC (12:51:12 PM): However, Dr. G sounds like a good doctor and I would be honest and upfront about your discomfort with his staff, with the lack of testing etc.
MB58SC (12:51:34 PM): Sure. You can send a copy to me, or post it on the forum or do whatever you wish.
L4Courtney (12:51:31 PM): ok
L4Courtney (12:51:36 PM): sounds good
MB58SC (12:51:42 PM): Getting multiple opinions is useful.
L4Courtney (12:51:53 PM): is your last name parent?
MB58SC (12:52:04 PM): Yes.
L4Courtney (12:52:20 PM): i've never heard of that before
MB58SC (12:52:30 PM): I will tell you, if you do have Lyme -- expect a lot of difficulty accepting the diagnosis, because it's very hard to get testing, because all the testing is flawed.
MB58SC (12:52:38 PM): Even the "best" Lyme testing, isn't credible.
L4Courtney (12:52:36 PM): though my friends last name is sepulveda the name of a major street around here
MB58SC (12:52:48 PM): Interesting.
MB58SC (12:52:51 PM): Well now you have heard it.
MB58SC (12:52:52 PM): :-)
L4Courtney (12:52:54 PM): heehee
MB58SC (12:53:02 PM): I would rule out as much as you feel comfortable doing though.
MB58SC (12:53:11 PM): I would recommend two main places to begin.
L4Courtney (12:53:10 PM): ok
MB58SC (12:53:22 PM): Neurolgy, and Psychiatry.
MB58SC (12:53:33 PM): Perferably neuropsychiatry.
MB58SC (12:53:53 PM): Your symptoms are systemic, but seem to be rooted in the Neurological and psychatric centers.
MB58SC (12:54:05 PM): You likely have a systemic infection, but it's causing these other problems.
MB58SC (12:54:11 PM): So starting in those places is a good idea
L4Courtney (12:54:07 PM): i went to a rheumy specialized in fibro and cfs and he said i should see one because of my cognitive problems
MB58SC (12:54:19 PM): Right.
MB58SC (12:54:26 PM): However, you will need to do something.
L4Courtney (12:54:25 PM): but he never got around to refering me
MB58SC (12:54:37 PM): If you see these other doctors, you must do the same thing you do with Dr. G.
MB58SC (12:54:44 PM): You must be organized and bring medical records.
L4Courtney (12:54:42 PM): just to his freaking pain clinic that cost me too much to see the one day and the one doc
L4Courtney (12:54:46 PM): ok
MB58SC (12:54:57 PM): Always get copies of every medical record from every doctor and every office visit.
MB58SC (12:55:09 PM): This helps your credibility.
L4Courtney (12:55:04 PM): yeah i'm going to gather all my past med records just to have them
L4Courtney (12:55:24 PM): i lost my car keys so thats going to be hard
MB58SC (12:55:32 PM): With credibility and clarity -- even if you're out of your mind, the paperwork speaks for itself, especially if you prepare it in advance.
MB58SC (12:55:57 PM): As far as the psychiatrist is concerned, I have recommendations later for meds to try.
L4Courtney (12:56:08 PM): darn it i have 3 hours to do 2 self portrait drawings for my art class!
MB58SC (12:56:20 PM): Sounds like a real hoot.
MB58SC (12:56:29 PM): I must get going, my roomie is pacing.
MB58SC (12:56:34 PM): Record this conversation.
MB58SC (12:56:59 PM): Read it over if you must -- summarize the most important parts and follow them. It will help you get on track.
MB58SC (12:57:02 PM): Got it?
L4Courtney (12:57:19 PM): got it
L4Courtney (12:57:21 PM): thanks again
L4Courtney (12:57:31 PM): i'll talk with you later
MB58SC (12:57:45 PM): Ok, you're welcome. If you have any questions, problems, whatever -- tell the group, me or whatever -- we'll help where we can.
MB58SC (12:57:51 PM): Talk soon, hope you feel better.
MB58SC (12:58:00 PM): *out*

jemsec specialty clinic

what are your thoughts? i'm considering it just to get all the testing and a good workup out of the way from someone who claims to be the leading doctor in lyme disease? but i live in california where he lives in north carolina.

i'm officially depressed.

i am officially depressed. after finding a small creature the size of a nickel on my body on two occasions today while on the couch i have successfully managed to flip out to the point of total break down after which i repeatedly pinched myself longing for the days when i was only depressed from family situations and cutting was the first step towards redemption into my own individual life where i became self reliant.

now all i want is my own robe, a personal butler, enough influence to get any tests i need and any doctor and method in order to get better, and unlimited Dine-Wise meals sent to my door daily. oh and a personal masseuse and unlimited amounts of detox foot baths (maybe they work). boy am i spoiled.

and the other option is to watch myself decompose while my brain and soul are still working enough to be awake for it all. if only i wasnt so spoiled, where i could watch tv, distract myself with my computer, have access to HeadOn to relieve a small amount of my pain, be comforted by a limited amount of food, baths, and blankets just enough to have enough hope for maybe the future where i will go back to the womb and everything will be alright again, if only this wasnt the case, then i can just get it over with. maybe thats why god made me born in los angeles, where its too hard to make it, let alone with any type of invisible illness with a political problem attached, but you get enough taste of things to keep me going in this hell hole. maybe this is what hell is like.

How long should it take?

I was ordered to get an MRI oh a few months ago maybe more and I'm still not approved. I dont get any updates about it or anything but a couple weeks ago i asked about it and they said it takes months to get approved. whats up with that? should i say something to my doctor? I have Blue Cross so that might be the problem...

tired

i did a lot yesterday with mikes birthday surprise party. so today i went to the car which was parked on the other side of the complex to realize i forgot the keys. i went back home and was wiped out. not wiped out like my head and chest like usual but just tired. I'm not in a lot of pain or anything, just need to rest. but my foot hurts and i still have my period. its been over a week now and i had it two weeks ago as well and that lasted a week. so i should see a doctor about this.

yay for tests!

Positive testing for bartonella heneselae and bartonella quintana antibodies. woopie! actually I've never been so happy! :-)

my leg hurts

so i've been feeling much better the last two days. i've managed to clean my living room and kitchen and fold all the clothes from like 6 loads of laundrey. But the heat was wiping me out today. and tonight i got depressed. i guess the pain makes me realize whats important because all i was focused on was how i want to be pretty and not all gross and stuff. I put on makeup and did my hair, changed my shirt all to go get groceries. lame i know. i went to 3 different stores (cuz thats what i do) and my right leg was cramping up so bad. it still hurts. i got depressed right after i realized that i had small groups tonight and it was just too much to figure out how to get my friend to give me a ride after i drop the car off at mikes work so he could get home without me. I guess i'm not ready for all that thinking and rushing to get stuff done and do things. I used to do it so well. I used to go to school full time, hold a part time job, volunteer in two ministries at church, and maintain a social life. where have those days gone. I got pretty sad tonight. But I bought myself yellow tulips which are making me quite happy. and they go well in my blue and white libing room. :-)

weakness

i never knew what it meant to have weakness or if i experienced it. i knew i FELT weak but to have weakness in a part of your body... well now i feel it. In both of my legs. i can only stand up for so before i will collapse.

i'm soo tired!

i'm sooo tired. after 10 hours at least of dead sleep where you would think i would wake up refreshed, i wake up tired. and i'm not depressed because michael does the greatest things and makes me smile :-) but i'm so tired, like not the excrustiating tired i used to feel where i would fall to the ground and pass out tired but just like i want to go to sleep all day long! aaaaaaah.

too ticklish and too tired

so i'm way too tired today. like normal tired when you just feel tired, not the exhausted depeleted tired like i usually feel. i was just tired but it extended to all day. i want to sleep. i've barely eaten the last two days. but i'm not in all that much pain today. a tiny bit but barely. but i'm weak, like the last day of the flu feeling when you need that extra day to rest otherwise you'll get sick again feeling.

on top of that michael barely touches me and i laugh hysterically cuz i'm ticklish. he touches my stomache or my let or my ear! and i'm laughing! poor man.

i looked it up and youre ticklish because your sensitive or its a defense mechanism, so maybe i'm just defending my already wacked up body even though i dont feel pain.

ps: my knee pain is all gone!

so i've been playing with my dog...

ive been using red clover and hyssop extract on my hands feet and scalp to help me fall asleep along with my heat pack on my back. it soothes me.

i started up my antidepressants again at least until my next apt so i can get one thats not as hard on the stomach.

i can only do one major outing a day, one minor outing and 1 small jobs or 2 minor outings, 1 big job and 1 small job, or 5-7 small jobs.

major outing = taking car to mechanic, getting groceries
minor outing = bank, going to my mothers
big job = dishes
small job = art drawing, phone call

ive been getting migraines every day but today i got me some HEADON great stuff!!
i barely ate today.

i'm getting that feeling again that i eat lunch and i feel like total crap afterwards. i wonder why.

no sleep

well i still cant get to sleep. i think its because on monday i had a migraine and i slept from 10 till 9. thats like 11 hours! and i still woke up with a bit of my migraine left.

aaah damnit!

now i have knee pain! I'm so tired of this! and tonight i was trying to explain that all I could do in a day was 5 things. I am limited to a small number of things i can accomplish which includes: washing dishes, making a phone call, walking, drawing, writing an email, paying bills online, grocery shopping counts as like a whole days worth and so does going to school to meet with a teacher/counselor/staff member etc. and a lady (which i dearly love) just didnt understand it! ugh! and i had a hard time explaining it because my brain is just swirling in circles and i cant keep a straight line of thought! anyways i wish it was all over.

theres always something

now i'm getting that pressure in my head that i got last summer which turns into a migraine. this is like my 3rd day i think with this. theres always something with this stupid illness!

anyways, my doc said to see my allergist and continue getting my shots. and he told me to take nasonex for the ear thing. I forgot to post that last time.

doggy doggy bartonella

so i got a note from my doctor saying that my pet dog is needed for my health. so we get to keep our dog Eyago! yay!.

and he ordered the right test this time. well at least the labs ordered the right one this time. so we'll see. all my tests from last time were good. so the more normal tests i get the more accurate my lyme dx is.

hurting ears/nausiated

so I've been depressed lately and cant seem to kick it! Mike took me to dinner and it was loud in there and my ears started hurting. like deep inside. i ate and i felt nauseous! and when i covered my ears i heard everyone talking clearer. Its like things close to me were muffled and i heard too much of everything else. Well i went home and now I'm all out of it. I feel like I'm retarded or something, like I'm acting that way cuz its hard for me to think straight. i don't know. i hate this. and it definitely affects mike and my relationship.

ugh depressed

i've been feeling better but as soon as i get out for a little bit my neck starts cramping up alot! i have to take a heat pack with me and take half a vicadin for pain. So today i was like Okay i'm going to class maybe? and as i was waking up i decided i liked my bed and sleeping much better :-)

i liked it all the way till 11:30 :-( I really dont want to do much today. but i'm cleaning a little. Maybe i should just take it easy and not be so hard on myself. this doesnt necessarily mean that i'm lazy or once i'm well i wont do stuff. okay i'm encouraging myself as i type this. thats good!

ssi

has anyone had any luck with applying for SSI? I've noticed I cant work and i cant go to school now, i can barely go out and do an errand without feeling horrible.

feeling better

So I'm definitely feeling better. I drove an hour today to go to a restaurant with two of my friends. We laughed till we cried. But I'm wiping myself out a bit. I vacuumed and put stuff away. My apartment is definitely not where I want it to be but I've made ALOT of progress. And I played with my dog, Eyago. He makes me happy and I believe is a definite part of my treatment. :-)

Herx

can anyone explain this to me:
have you had one?
how long do they last?
When do they happen in relation to treatment?

pain agony go away...come again another day

drove the 45 minute drive by my weak self to see my doctor today. He changed my meds back to zithromax 250 1x a day. he wants to wait a week for me to do 500mg a day and go from there. Well i waited to take my clarithromycin until I got to the office in fear of something happening while driving. So I drove to McDonald's and got me some food. Then I felt really bad so I had a #3 in the bathroom. Drove a bit and realized while going barely 20mph that i was going to crash on the freeway home. I called my mom and begged her to pick up Michael at 3:30 and drive out there to get me. When I tried to eat my food I wanted to throw up! Mostly I felt that with my Mr.Pibb which is weird. I slept, agonized, etc. I felt so bad. When I woke an hour later I started to feel better. Slowly I was able to drive home. I did. So now I'm wondering if I had a Herx reaction, which would be a good thing.

anyways, on the breast pain: The doc said I had fibrocystic breasts which is common but I should check them everyday so I can notice a change right away.

lungs crushing

i got 2 hours of disturbed sleep. I feel like my lungs are crushing in my neck where my lymph nodes feel sore and slightly stiff as if inflamed or something and my bumps are still here. i hope this is just anxiety!

bumps

decided to check out my body for signs of more bumps.
they are on my arms/back but not chest or stomache. and they itch slightly
i also noticed that my legs have small subtle bruises on them all over.

this disease is SOOOOO anoying!!!!!!!!!!!!

update

the only thing I've really been able to do lately is watch TV and other passive things. I've been worse but its not agonizing. i am basically bed ridden but i only felt really bad for about an hour today. my pain is minimal and my stomach feels funny. if i get up to do anything i get achy light headed and weak. my temperature is staying around 96.5. We've had to deal with some past due tickets which have cost us 2000 that we are still figuring out but I definitely think a testing at Igenex will do me good. Most of my teachers are willing to work with me which is nice.

I never thought i would be so weak and ill but not feel agonized. I always had the two come hand in hand. I'm NOT on the verge of killing myself. ha ha despite my being bed ridden and all cuz I'm feeling Okay.

the bumps on my arms have been coming and going.
took another pregnancy test and its negative.yay!
and my left breast still has pain.

geez another symptom

still incapacitated...or whatever. i have little lumps in both of my arms (could be a rash) doesnt itch though. and my left breast hurts with light pressure, still. I thought it would go away but I guess i should put everything down here,

other possible diseases i could have

Leptospirosis
Meningococcal disease
Relapsing Fever
Septicemia
Brucellosismelioidosis
dengue
African trypanosomiasis
Sandfly Fever
Trichinosis

My diagnosis...

Went to my appointment today and saw the disability documentation sent from my doctor:

My doc: Specialization-Internal
How often sees patient: every 2 weeks
diagnosis: 780.79, 784.9, 088.81
disability considered : progressive

Here is the def. of the dx codes according to http://www.icd9data.com/2007/Volume1/default.htm:

ICD-9-CM Diagnosis 780.79
Other malaise and fatigue

* Clinical sign or symptom manifested as debility, or lack or loss of strength and energy.
* Exhaustion that interferes with physical and mental activities.
* Fatigue is that state, following a period of mental or bodily activity, characterized by a lessened capacity for work and reduced efficiency of accomplishment, usually accompanied by a feeling of weariness, sleepiness, or irritability. (On-line Medical Dictionary)
* The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli.
* Weakness; lack of energy and strength.

* 780.79 is a specific code that can be used to specify a diagnosis
* 780.79 contains 31 index entries

ICD-9-CM Diagnosis 784.9
Other symptoms involving head and neck

* Abnormal breathing through the mouth, usually associated with obstructive disorders of the nasal passages.
* An offensive, foul breath odor resulting from a variety of causes such as poor oral hygiene, dental or oral infections, or the ingestion of certain foods.
* The sudden, forceful, involuntary expulsion of air from the NOSE and MOUTH caused by irritation to the MUCOUS MEMBRANES of the upper RESPIRATORY TRACT.

* 784.9 is a non-specific code that cannot be used to specify a diagnosis

ICD-9-CM Diagnosis 088.81
Lyme disease

* A deep type of gyrate erythema that follows a bite by an ixodid tick; it is a stage-1 manifestation of LYME DISEASE. The site of the bite is characterized by a red papule that expands peripherally as a nonscaling, palpable band that clears centrally. This condition is often associated with systemic symptoms such as chills, fever, headache, malaise, nausea, vomiting, fatigue, backache, and stiff neck.
* An infectious disease caused by a spirochete, BORRELIA BURGDORFERI, which is transmitted chiefly by Ixodes dammini (see IXODES) and pacificus ticks in the United States and Ixodes ricinis (see IXODES) in Europe. It is a disease with early and late cutaneous manifestations plus involvement of the nervous system, heart, eye, and joints in variable combinations. The disease was formerly known as Lyme arthritis and first discovered at Old Lyme, Connecticut.

* 088.81 is a specific code that can be used to specify a diagnosis
* 088.81 contains 5 index entries

Bartonella

So I went to the doctor today and he changed my meds to clarithromycin. and i got a test for Bartonella. He says the red spots all over my body indicate that.

It adds up with the lumps i used to get that got to be the size of golf balls!

anyways i'm just glad i get an interview with the disabilities office at my school.

getting worse

i have a really stiff neck. barely can move it and pins and needles all through my spine and bones, my right arm keeps falling asleep also.

petechie

anyone get this? got it all over my body., Dont know if its related to 1)a nasty sunburn i got in Mazatlan or 2)not taking my antibiotics for a couple of days

Rash still here.

my neck is cramping up. i felt like crap today and finally got two weeks of medicine for just about 50 bucks. geez. the rash isnt gone. Here is my list of possible dx:
Leptospirosis
Meningococcal disease
Relapsing Fever
Septicemia

who knows what i have. hopefully i get better. at least this summer i wont be doing anything.

another thing i worry about is being pregnant. I just have this feeling that I am even though i've taken 2 tests and both said negative. so i'll force myself to wait a week to take another one. But I actually dont want to deal with that right now. I just want to get better. As it is we cant even get our tiny apartment in order.

At least my sunburn has turned into a nice tan thanks to the maker of Aloe Vera!

Petechiae

So I'm really itchy all over, found petechiae all over my body. I havent taken my medicine for two days now because I dont have the money and i run out. But I found some prescription assistance programs so it wont be so bad. But the petechie worries me and i'm bruising more.

medical bills

ugh! i just found out that my insurance doesnt cover prescriptions! And this whole time I thought it did and that I just had to pay up front and submit a claim and I would get reimbursed! we dont have that kind of money...

mexican sunburn

so i went to mexico this past week and used sunscreen every day except yesterday. now i have a nasty burn all over my body! bright red. chills and a weird achy feeling. not to mention i was EXTRA anxious on the plane ride home today. i couldnt shake it. anyways, even mike said i should see a doc about it. he never says that.

Whooping Cough

I got my test results back today at the doctors. No suprise i'm negative with the Western Blot for lyme disease and babosia. The labs accidently did wrong labs and tested me for B. Pertussis (aka whooping cough virus). And my results were high!!! weird! But nonetheless my doctor is continuing my treatment of Lyme like illness with Zithromax 1x a day 250mg.

going out of the country/feeling better/school

Last Tuesday was mike and my couples group. Well I was giving an update on my health with the ladies during prayer requests: I said i have been feeling a lot better on my antibiotics, happy, hopeful, thinking i might actually enjoy my wedding. I said i should know my dx next Friday. One lady mentioned "what if your doctor says you shouldn't leave the country?" We are going to Mazatlan Mexico for our honeymoon. I straight up said (although she was just making a mini joke) "I wouldn't go".

Tonight I was thinking about that, how sad that is, a honeymoon is soooo wonderful and one of those things (especially if you pay so much for it) that you just don't give up. I must be so devastated by my illness to think that I would rather shoot myself than go on a trip that would keep me sick. And thats sad.

well I've been feeling rather good comparatively. I can walk the dog, walk around campus, lift my arms, etc and not feel like i used to. I can think clearer. Its pretty nice.

but today i crashed slightly. I was in the library finding books for my ballet term paper and felt this rush of this drained feeling. I didn't go to Spanish class. Well, I can't feel bad. My teachers are all supportive, but I wouldn't blame them for giving me anything less than a C. At least I'll have a report from the doctor to give my school and that'll help with showing why i did bad this semester.

feeling clammy

is this a symptom of anyone? And what is usually associated with it? For me its a sinus thing as well with sticky feeling in my sinuses. its weird. I feel wiped out usually at this time too.

underarm abscess...

the other tick disease caught my attention (the cat scratch thingy) and I found a picture of what i used to get. abscess under armpit? any one ever get these? i got it 3 times. it was strange, never had them before, this was 6 months after i possibly got sick. one time a doc said it was folliculitis but it was the size of a golfball. another time the other doc said it was inflamed sweat glands. just curious

Lymie Headaches

I've heard you guys mention this headache that you all get. would you guys describe it?

I remember complaining to my first doctor about headaches and he just said they were migraines when I knew they werent because i actually did get migraines in high school and randomly still did but this headache was different. went to a different doctor who said it was tension and i needed to see a therapist (neither of these doctors listened to my other symptoms cuz i was crying that i wasnt feeling well so they just thought i was depressed)

anyways, it would be nice to hear some different descriptions...

Azithromycin aka Zithromax

I'm on it. I don't have my labs back yet but i've been on it a week and have significant improvement. The doctor said today that it was interesting I was improving. I don't know what he meant by that. Do you think that means I probably have lyme? Or based on your experience what do you think? I guess I'm just impatient and cant wait till my next appointment in 2 weeks to find out.

anyways i live in los angeles and i distinctively remember hiking with some friends and we sat on this wood thing and it had a whole lot of tiny black ticks on it. The more I look into it I really think they were nymph black legged ticks. so im not sure if i got sick in another country a year earlier or i got sick then...

no diagnosis as of yet...we'll see in a few weeks. I didn't have hope before. alot of my dreams i had to set aside because I thought i would never get well. now that i have a good doctor i have hope agian.

documentary on lyme disease

http://www.lymediseasefilm.com<--watch this film trailer!!!


Lyme disease may be the fastest growing infectious disease in the U.S., yet each year, thousands are misdiagnosed. Many don't look ill, but suffer from crushing pain, numbness, and fatigue.

Others lose mobility, memory and even speech.

Why are physicians so unaware of classic Lyme symptoms and the true extent of the epidemic?

Once diagnosed, why are so many doctors and insurers refusing to treat these patients?

stages of chronic illness

Stage 4 – Depression

Realizing how dramatically their lifestyle has changed, FM patients experience depression. They wonder how they are going to live the rest of their lives, and feel utterly hopeless about their situation. Realize that there will be good days and bad days, that pacing can help prevent FM flares, and that there is life after FM.

i dont have fibro but thats the stage i'm in in this moment. i feel like i've been wasting my life away this last year feeling ill. i've done alot but its so disapointing to sit here and realize that its going by so quickly and so quickly in pain. i have malaise (i think, just feeling ill all the time) cant work and now its affecting my going to school, clean the house go out to dinner even. it was a depressing feeling realizing my wedding is next month and will i be able to dance? feel good after walking the few steps down the isle? will i be so ill that morning i want to just cancel it all? what about my honeymoon? what about school, do i have to take all online classes? what about not being able to think clearly cuz i feel so ill? and then i'll turn 50 like my parents just did and my whole life wasted.

i'm either trying to figure out whats wrong with me while lying here on the couch (the only thing i can do) or distract myself. how depressing! good grief. bah humbug.

motivation

what do you do when there is no motivation to get up. I'm thinking in my head, if i get up and go out i will feel better but i know its not true. i feel the same sleeping as i do getting out going to school. the sucky thing is (or maybe its a blessing) i cant hold a job because of this illness now (whatever we may call it cuz there aint a dx yet). how do you motivate yourself to get out of bed? I''m not depressed I'm just in a lot of pain and feel ill all the time.

waking up

t takes everything in me to get out of bed this morning. nautious, in pain. i have to tell myself to take it one step at a time cuz i think of all the spoons i will use up just going through 3 hours of my day. but stressing will rid me of spoons. Now time to get Jamba Juice to take my yummy pain killer. Hopefully I don't look too bad this morning. I only have a little spoon to use to lookin the mirror and mess with my hair a bit.

Tramadol and Sudafed

i took my tramadol this morning and i had a sinus headache so i also took some psudofed. i ended up with the worst migraine ever and all keeled over, i haven't eaten all day and have been sleeping. after throwing up all the psudofed I'm feeling slightly better.

no diagnosis no tests

so i went to this fibro expert and he was really nice and told me to get any test results from my previous doc so that i could get more tests. well i went back and told him how much pain i was in and he just sent me to fibro rehab clinic and gave me pain meds. then i call him and ask if the clinic will take more tests, and he said no and then said bye. i;m not an expert but isnt he supposed to take more tests to rule out other things? I mean i dont even have a diagnosis yet! UGH!

how docs should treat you!

this is just what i added to a forum question

~dont automatically rule out rarer diseases if symptoms fit the criteria. make sure and get some ACCURATE testing. (IE hypoglycemia or certain cancers)
(one time i went in urgent care for a cold or something and a newer doctor ordered chest x-rays JUST IN CASE, that was awesome!)

~if a symptom doesnt seem to fit into textbook diagnosis, still consider it.

~Consider newer studies on different illnesses and not blow them off just because you were never taught about them in school.

~just because your an expert in a certain area of medicine (IE migraines) dont assume all symtoms lead to this problem. (like my old doctor who only focused on my head pain and dismissed all my other symtoms to depression)

black spot under skin

black spot under skin? i have like 2 of them about nickel sized on my upper thigh. feels like a bruise. i was wearing some new jeans and it kept feeling like it was pinching my skin. i was freaking out and couldnt stand the pain and ichiness so i took them off and those black spots were there and i scratched it a bunch. anyways that was 2 days ago and its still there.
and my bones hurt and i'm drained with NO energy. havent really gone out for 2 days cuz of the pain fatique and weakness. Rhuemy says its not fibro. i'm going in for more tests on thursday.

needles in the bones

i feel like prickly needles along my spine, neck, under jaw, shoulders, back arms fingers toes. and yesterday it stared where the air itself is too heavy. weird. but instead of being tired and worn out feeling i am alive feeling health, moving furnature, etc. but still this pain. is it lupus? also i can do ballet class for two hours but if i do 15 minutes of my next class (dance for children) where we turn around and do slow random movements i get weak really suddenly and need to sit and i get shakey like i have the flu.

What happened at the doctors...

so i went to the doctor, he was nice and listened and wants to find out whats wrong. i got 2 of the fibro points cuz i was feeling well that day. but i was having a hard time telling him my symptoms, blanking out and such (which has been a recent thing last month) and hes sending me to a neuro psychiatrist to figure that out first. he said i have a low tolerance to pain. could possibly be vit d deficiency or atypical depression. or something else. who knows...... but he said he didnt want to give me anything until he knows what it is. i go back in a couple of weeks to get more tests after he reviews all my previous testing from other doctors.

Low Temp

anyone ever get a low temperature when they feel ill? well i do, but i dont know if its all the time or what but my temp falls to about 95.0 when i wake after sleeping for some time and rises a bit to 97.0

no spoons no job

Linz wrote:
Today for instance, I thought I'd be having a good spoon day as I got to bed earlier than usual but I woke up with LESS spoons than normal so I had to reschedule activities and chores.


OMG i have those days ALLL the time! aaaah they are sooo frustrating. especially if you work and they bug you about letting them know ahead of time if you'll be out or something. ha, yeah like that can happen so practically for us with this problem...haha thank God my mom is paying me to help her homeschool my lil sis and bro cuz she can cuz me breaks (she has fibro also)

Dr Apointment

i have a doctor appointment with Dr. Stuart L. Silverman on Feb 1st, whose the Medical Director of the Fibromyalgia Rehabilitation Program at Cedars Sinai. yay!

Introduction to Message Board

hi, ive been posting here and there randomly since last august when i was at my witts end.

anyways heres my story:

past:
in high school i had severe family problems, stress, irregular menstruation, migraines, depression, and suicidal tendencies. which doesnt help the diagnostics...
anyways while in high school i went to a psychiatrist who put me on a bagillion things including lithium, deoakote, buspar, ritalin, and other things like anti depressents and such. and because i went to juvenall hall i had my hep shots 3 times. i dont know what dammage all that did to me.
my mom also has fibro, ibs, and acid reflux. one grandma had lymphoma, and another grandma has diabetes.

last year:
in dec of 2005 i started working with preschoolers in LAUSD schools. i felt nausious and had back pain and in the winter break i had gotten a flu or cold and had lung and ear infections. at this point it wasnt bad just threw me off course a little. what did bug me was i was experiencing some reactive hypoglycemic symptoms.
later months some mornings i would wake up and just not be able to go to work cuz i felt like i was comming down with something.
went to an allergist and a few months later started allergy shots. great! i thought i was better.

last summer:
i took the subway to the other side of LA to visit someone and i started feeling like my nose was stuffy and if i didnt get it out i would get a headache. at night the back of my eyes would hurt and i was feeling woozy. i went to the ER because it lasted for a week and a half. they gave me some vicadin, took a CT and sent me home. the next day I started summer school like 45 min from my house and i was doped up feeling horrible. MY GP specializes in migraines (but doesnt believe in fibro or CSF) told me i had bad migraine attack and gave me prednisone for 7 days. my symptoms cleared, i felt alive, awake, and realized that i also had vertigo, nausia, and other stuff. well the prednisone wore off. i woke up one day with a stiff neck and a headache and got a massage and felt a little better. but i could barely drive because i was out of it. i got in a minor bumper to bumper going off the freeway cuz of my cognitive delay.
one day i was having hypoglycemic issues again and my arms felt like heat was comming off them and my mouth and fingers felt tingly. that night my right foot felt as if it was swelling but it wasnt, but i couldnt sleep so i put ice on it anyways. some days i would have strong cravings for iced tea, plain hamburgers, pickles, or chocolate frozen yogurt or i would feel as if i'm lacking what that thing has in my body.

regular school started and one morning on my way to school taking the bus i had to go home because i was so nausious i felt like fainting. another day i did faint, i felt like i was comming down with the flu but it never came. i had to have someone come pick me up.

later, at nights i would sleep spells and fall asleep randomly (i thought it was narcolepsy but now i dont know). then it would start with burning in my shoulders and wouldnt want to move my upper body cuz it would make me feel like i would pass out.

i have really watched my triggers for migraines and have been eating so that i dont get hypoglycemic issues and eating things that i'm craving so i dont have other weird symptoms.

but i still have foggyness, i'm out of it i feel alot of the time, neck muscle pain thats spreading (i dont feel it all the time). exercize makes it worse

i was taking celexa for a couple months and it helped alot but the side effects were bad so i stopped. soda gives me heart flutter feeling.

today i couldnt wake up in time (usual thing, it takes me a long time to ever hit that "i feel awake" feeling) and so ididnt eat breakfast. i went to this meeting at my church and ate a doughnut (bad move) nd the lady was singing on the top of her lungs and we had to stand cuz everyone was standing and iwas in the front and we were standing for 30 minutes and i felt awful!
around 11 i ate a burrito and my husband and i went somewhere and i crashed on the bed at that place like it was so horrible. it was like i was in deep sleep and couldnt wake up even if i tried! even now it feels like i'm sick (flu sick) but not. aaaahhhh.

well i see a new doctor at Cedar Sinai hospital next week that was recommended by someone.

-Courtney

PS: i'm not sure if any of this makes sense. i'm kinda out of it now and it took me a while to remember what i was typing at times. i've been laying down all day my upper body and head hurts. and to think i had 2 good days and its all over! again.

bad thinking

i find that several blocks before i have to turn somewhere while driving i have to keep repeating to myself "turn right turn right turn right" otherwise i'll just forget. its awful and i'm only 21. i think its silly when i'm with someone and i dont know where i parked. i'm so used to it now like "well everyone is like that" haha

doing stuff!

Dog/Cat Mom wrote:
"Re. losing weight on Prednisone: me, too. It made me so jittery (60 mg) that I didn't think about food, just about doing--well, whatever I needed to do: comb the dogs, wash the dogs, comb the cats, clean the house, vacuum my car, cut out/assemble quilts, work outside in the yard (but only w/long sleeves & hat), etc.

Because, on that high a dosage, my joint pain went away (I was being treated for poison oak YUCK) and I could DO things! So I DID them! This was obviously a form of exercise and I wasn't eating so, for those weeks, I did lose weight.

Thank God.

DCM"


i just read this and though "wow i wish i could do all that with no pain." this summer i took prednisone for about 10 days and i felt amazing! no pain. i was getting treated for a severe case of migraines. i wish i could feel that way again. i asked about the meds but my doc said it was addictive and has a lot of side effects.

not officially diagnosed...

since i'm not officially diagnosed i go through this thing where i want to be diagnosed then i go through denial and depression anger and then back again! its weird that we want this diagnosis isnt it? but yeah, i dont want to feel like i'm crazy.

tingling sensations

it happens after i cross mylegs. when i go to sleep i have to move around alot so that my legs or arms dont fall asleep.