About this Blog

~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again

Wednesday, May 30, 2007

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.

Monday, May 28, 2007

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?

Sunday, May 27, 2007

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???

Saturday, May 26, 2007

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.

Thursday, May 24, 2007

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.

Wednesday, May 23, 2007


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.

Tuesday, May 22, 2007

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...

Friday, May 18, 2007


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...

Wednesday, May 16, 2007

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.

Monday, May 14, 2007

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???????????????

Sunday, May 13, 2007

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!!!!!!!!

Friday, May 11, 2007

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.

Thursday, May 10, 2007

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.

Wednesday, May 09, 2007

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...

Tuesday, May 08, 2007


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.

Friday, May 04, 2007

yay for tests!

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