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

Saturday, December 29, 2007

Merry Christmas

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

Wednesday, November 07, 2007

"i'm new" from PTSD HealthBoards.com

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

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

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

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

Tuesday, November 06, 2007

does your stress disable you? from PTSD Healthboards.com

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

can anyone relate?

feel grimey

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

Saturday, November 03, 2007

natural disasters from PTSD Healthboards.com

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

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

triggers...tv and movies PTSD Healthboards.com

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

pretty much better from Lyme Healthboards.net

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

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

Thursday, October 25, 2007

no more antibiotics

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

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

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

Tuesday, October 09, 2007

depersonalization and derealization

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

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

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

Saturday, September 08, 2007

Climate Change Ticks Ever Closer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But once the ticks are here, will they survive?

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

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

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

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

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

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

The Press of Manorville & The Moriches Sept 7, 2007

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

By Bryan Finlayson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, September 02, 2007

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

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

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

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

Wednesday, August 22, 2007

I want to be 21

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


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

Thursday, August 16, 2007

i got a rash?

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

Tuesday, August 14, 2007

Hands and Feet hurt

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

the last two weeks

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

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

Monday, August 13, 2007

Brain Fog

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

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

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

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

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

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

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

Friday, July 27, 2007

nauseous today

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

Tuesday, July 24, 2007

doing the laundry is painful

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

Monday, July 23, 2007

tired but i can take the heat

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

pressure pain is back

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

Friday, July 20, 2007

update from last blog

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

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

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

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


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

everything i knew i loved i dont enjoy

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

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

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

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

fuck it all!

Wednesday, July 18, 2007

i'm not awake

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

Tuesday, July 17, 2007


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

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

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

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

Friday, July 13, 2007

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

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

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

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

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

Sunday, July 08, 2007

"bad days"

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

Wednesday, July 04, 2007

food allergy? and no period!

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

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

Wednesday, June 27, 2007

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.

Saturday, June 23, 2007

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

Friday, June 22, 2007

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.

Wednesday, June 20, 2007


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.

Saturday, June 16, 2007


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.

Friday, June 15, 2007

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.

Tuesday, June 12, 2007

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.

Friday, June 08, 2007

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

Thursday, June 07, 2007

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.

Sunday, June 03, 2007

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.

Friday, June 01, 2007


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.

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*
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