advanced global personality test

It's actually pretty pathetic how right it is. (This was so fucking self-indulgent, but it made me think and look at myself from an outside perspective and from an inside perspective. Something I've been needing, I think.)

Advanced Global Personality Test Results
Extraversion |||||||||||| 43%
Stability |||| 13%
Orderliness |||||||||||| 46%
Accommodation |||||||||||||||| 70%
Interdependence |||||||||||| 50%
Intellectual |||| 16%
Mystical |||||| 30%
Artistic |||||||||||||||| 63%
Religious || 10%
Hedonism |||||||||||||||| 70%
Materialism |||||| 30%
Narcissism |||||| 23%
Adventurousness || 10%
Work ethic |||||||||||||||| 70%
Self absorbed |||||| 23%
Conflict seeking |||| 16%
Need to dominate |||||| 30%
Romantic |||| 16%
Avoidant |||||||||||| 50%
Anti-authority |||||||||||| 50%
Wealth || 10%
Dependency |||||||||||||||| 70%
Change averse |||||||||||||||| 63%
Cautiousness |||||||||||| 43%
Individuality |||||| 30%
Sexuality |||||||||||||| 56%
Peter pan complex |||| 16%
Physical security |||||||||||||| 56%
Physical Fitness |||||||||||| 44%
Histrionic |||||| 23%
Paranoia |||||||||||||||||||| 83%
Vanity |||||| 30%
Hypersensitivity |||||||||||||||||||| 83%
Female cliche |||||||||||||| 56%
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Stability results were very low which suggests you are extremely worrying, insecure, emotional, and anxious. (Couldn't be truer.)

Orderliness results were medium which suggests you are moderately organized, hard working, and reliable while still remaining flexible, efficient, and fun.

Extraversion results were moderately low which suggests you are reclusive, quiet, unassertive, and secretive.

trait snapshot:
paranoid tendencies, irritable, anxious, fidgety, dependent, worrying, emotionally sensitive, prone to regret, depressed, second guesses self, somewhat fragile, dislikes change, prefers organized to unpredictable, suspicious, phobic, craves attention, not a risk taker, low self control, very sensitive to criticism, unadventurous, does not make friends easily, defensive, obsessive, low self esteem


just for me to know, the description of the stuff i scored highest on. (the ones i'm willing to admit are in pink.

accomadation - 70% - nice, happiest when helping and giving to others, does not mind serving others, unselfish, generous, self sacrificing, other-centric, warm, caring, loving, peaceful, modest, has trouble saying no, has trouble being firm, does not enjoy fighting, very loyal, prefers team victories over personal glory, wants everyone to get along, not manipulative, drawn to public service fields, good listener, comforter, not materialistic, honest, agreeable, nurturing

hedonism - 70% - willing to break the law if the monetary benefit is great enough, likes tattoos, likes strip clubs, prone to substance abuse, prone to shoplifting, thinks marijuana should be legalized, not opposed to breaking laws, promiscuous, prone to cheat in relationships, kinky, likes to dress provocatively, believes pleasure should play a central role in life, can be crude, believes religion is foolish, does not worry about consequences of actions, addictive tendencies, more a night person than a day person, erotic, more likely to have been on anti-depressants, gets attention through negative behavior, reckless with money, prone to nihilism, unpredicable, self destructive

dependency - 70% - not confident, prone to mistakes, indecisive, desires security and support, fears having no guidance or support, frequently feels envious, not productive without reassurance, gets very attached to people, feels guilty when they disagree with people, seeks acceptance and recognition from peers, dramatizes their suffering, impressionable, can be talked into doing things, fears being unwanted or unworthy of love, never knows what to do next, personality is centered around low self esteem issues, swayed by emotions, can't handle people being mad at me, freezes up in stressful situations, influenced more by others than self, avoids responsibilities, life lacks direction, prone to paranoia, prone to shame, daydreams about people to maintain a sense of closeness

paranoia - 83% - suspicious of others until they have proven themselves trustworthy, more doubt than belief, preoccuppied with death and suffering, fears being harmed or controlled, bitter, looks for hidden meaning in things, personality is centered around low self esteem issues, feels misunderstood, thinks people would not like them if they really knew them, defensive, often experiences disgust, love-hate relationships with most things, likes to test people's loyalty, thinks life is overrated, focuses on suffering, feels like an outsider, existentially depressed, does not trust what people say, prone to shame, suffers from depression, knows the dark side of life very well, attracted to things associated with sadness, would rather remain alone than risk rejection, hard to get to know, makes enemies, loner

hypersensitivity - 83% - tends to get too emotional, can't take it easy, feels gloomy and distraught frequently, more past than future, more feeling than doing, not confident in their opinions or abilities, dislikes themself, prone to paranoia, affected by the moods of others, broody, envious, ideal love seeking, expressive, dramatic, tempermental, impressionable, swayed by emotions, fears loss and separation, poor self image, gets very attached to people and things, hopeless romantic, focuses on suffering, desires security and support, defensive, suffers from loneliness, feels invisible, fears rejection in relationships, can't control romantic feelings and thoughts, existentially depressed, suffers from depression, prone to shame, prone to panic attacks, feelings guide most of their behavior, can't handle people being mad at them, dreams about a rescuer, daydreams about people to maintain a sense of closeness, familiar with the role of victim, worries they will make the wrong choices, conflicts between thoughts and feelings, desires more attention


Quick note - Got an MRI today.

MRIs and CT Scans.

months ago, i requested dr. reynolds send paperwork to GAU so I could get disability assistance, and he never did. and he had THREE MONTHS to send my medical records to Dr. Kenney, and never did. So today, Kenney had to call them and request they fax my information, but it was all useless crap. So he has to start from scratch, which isn't exactly a bad thing. he took SEVEN VIALS of blood - which was incredibly painful. they had to poke me twice.. the worst part is the needle being held in and being knocked around and bumped when they're filling the vials. i hate that. i get uncomfortable with the touriquette around my arm, and them poking at my swollen veins. i hate that. then, when they don't get the needle in the vein, they have to poke the skin, WITH THE NEEDLE IN IT, to try to get it in the vein, and let me tell you - it's not fucking comfortable. it's not like it's agonizing pain, but it hurts, and it's uncomfortable, and i don't suggest it. the doctor noticed some concentration / memory loss problems and decided to get me a brain scan / mri.

people generally have no idea what an mri or ct scan consists of. a lot of people automatically assume that you're in a big closed coffin like tube for hours unable to move. those kinds of scans really aren't THAT common. the most common mris aren't always of the brain / head, and it's not a long tube you're in. you're in a big round hole that makes loud clanking noises and you have to stay very still, but it's usually only for about 20 minutes. sometimes less. and CT scans are even BETTER. there's the big round hole that makes a lot of noise, but it only takes a minute and you're in and out.

this one is going to be incredibly uncomfortable. i'm going to have to be laying there for an hour to and hour and a half getting this brain scan. i told dr. kenney that i didn't think id' be able to stay still for that long.. for those of you who don't know what it is like to have lupus, ra or fibromyalgia, it can be really hard to just stay still. there is no comfortable position - especially not on an mri table. it's harder than a rock and NOT comfortable in ANY way. Thankfully, dr. kenney is a great doctor - unlike my last one, and was actually concerned about my anxiety. so i'm getting sedated.

Eye Pain

My eyeball hurts really, really bad.

i figured out that it's probably something related to lupus or ra. i have an appointment with dr r. on monday. argh. i hate going to see him i don't want to go to an appointment with him. why do i have to wait three months to see this other doctor? this is ridiculous. so now i'm going to stay positive until we can figure out what's wrong with it. maybe it will just go away on it's own.. but the lupus and ra websites said that it isn't good to leave it untreated. i worried sean about it at work. =/

i looked up a bunch of stuff about our plants and potted a plant today. it was eyeball hurts.

Troubles With DSHS

I have problems with my medical / food stamps / etc ALL THE TIME. The latest in said developments?

First of all, my food stamps didn't go through until the 3rd of the month. When I called my social worker to ask about the day they should be available her extremely helpful response was 'I dunno.. Usually it's on the first, just keep checking.' And when I first picked up the EBT card I asked for a welcome pamphlet, but was told they didn't have them.. However, whenever I do research about DSHS online, it says I should've recieved a welcome packet with my EBT card. Nothing.

Today, I go to the doctor, then I go to the pharmacy to fill my prescriptions for Prevacid (because I have acid reflux, and when I don't take Prevacid at least once daily, I get horrible, awful, heartburn.) and for more pain killers. This is my usual pharmacy, I know the pharmacist, he knows me, etc. He tells me that I was denied both. 'Person not covered.' WTF?! That's really great for a person with severe illnesses and an anxiety problem, tell them they don't have medical. So, my mom paid $20 for my pain medication, $5 for some lesser strength antacid, and we came to my house to get the phone number to call my social worker.

It wasn't even HER fault! It was some other random person. Since my program changed (meaning I got food stamps.) they had to switch to another program on my file. Well, they didn't do it right, she put me down for food but removed me from medical. She didn't apologize or anything. She said 'Want to come pick up your coupon?'

Um, no, we don't want to have to pay for your mistake. She is sending it in the mail, and hopefully I'll be covered soon. Also, the doctor sent in my paperwork for CASH assistance, yet DSHS hasn't recieved it yet. Which means, it's probably going through DSHS's horrible and long process of filing and processing paperwork.

Another Denial.

Fifth time. Not disabled by their standards.

New House.

Sean's parents are helping him buy a new house! It's a 4bd 2ba, we'll each have a room and we'll have three roomies. I haven't been there yet, but I'm really excited.

I'm really hoping my disability gets approved and I can start paying my way, and doing new things.. I want to build a couple websites, (Sean and I are in the early stages of putting together a comedian reference website.) and also create an etsy store where I can sell the various things I make.. Jewelry, crochet hats, crochet washcloths, etc.

I don't see the dr again until 10/23, then we move into the house on 10/25. busy month!

Swollen Eyed Girl

A few days ago, I told Sean that my eye was bothering me. The next morning, it was super red and swollen. I have to go see Dr. R tomorrow.

I'm really anxious and am sort of freaking out in my head, about everything.

Bumbershoot 2006

So this was my first year attending Bumbershoot, the Seattle arts and music festival. They have a billion music acts and each year the comedy has been getting better and better. When I found out that Tinkle was going to be performing at Bumbershoot, I decided then and there I would go. I didn't know any other music or comedy I'd want to see at that point. Then they released the whole lineup. Nothing musical I had any kind of inkling to see except Atmosphere and Sean wanted to see A Tribe Called Quest. But the comedy lineup was PHENOMENAL.

Not only were Tinkle, a comedy 'troupe' that consists of three of my favorite comics of all time, David Cross, Todd Barry and Jon Benjamin.. But also Zach Galifianakis, Doug Benson, Maria Bamford, and a bunch of other comedians I'd never heard but have heard OF. As we got closer to Bumbershoot, I began to worry more and more about being out in the sun, being tired, walking around.. Plus everybody I talked to said that the comedy theaters are usually packed to only standing room, and if you saw one show, there was NO WAY to make it into the show directly after that.I stressed, but then I saw Doug Benson say that if anybody needed help getting into shows to let him know.

Doug gave me his number and I called him when I got to Seattle. Thanks to him, Sean, Chad and I got to sit in each theater between setting up / emptying and filling the theater. So we had amazing seats the entire time.

The first day we saw John Mulaney, Maria Bamford, Dana Gould, (Eric) Slovin & (Leo) Allen, Zach Galifianakis, Aziz Ansari, Nick Thune, Mary Lynn Rajskub, Doug Benson, and Tinkle at the Intiman Theater. The Mulaney/Bamford/Gould show I had crappy seats all the way in the back, but the rest was front and center, basically.

The second day we saw ASSSSCat (with emcee Doug Benson.), Nick Thune, Mary Lynn Rajskub, Aziz Ansari, Trapped in the Closet (hosted by Paul Scheer and Aziz Ansari with guest panelists Leo Allen, Matt Walsh, Mary Lynn Rajskub, John Mulaney, and Rob Huebel.) and Best Week Ever Live (Paul F Tompkins, Christian Finnegan and Doug Benson). While waiting after ASSSSCat got over, Michael Blieden, a documentary filmmaker interviewed me for Doug Benson's upcoming project. He's doing a documentary on Marijuana. Kind of like Super Size Me only 30 days of smoking weed. I just gave a short interview about medicinal and how it helps for me so much. It was really great to meet Michael Blieden - who I was a fan of without even knowing it. He did the Comedians of Comedy movie AND show, and the upcoming Zach Galifianakis Live at the Onion movie.

The third day Sean and Chad ran to get me some food while I waited outside the handicapped entrance at the Charlotte Martin theater. While there, I happened to be sitting by the stage entrance, where Doug Benson strolled out and hung out with me for a few minutes. After that Arj Barker came and sat on the other side of me, then out runs Zach Galifianakis. They introduced me, and I got star struck. Doug, Arj and Zach surrounding me plus this great filmmaker filming it all. It was a great time. I was then interviewed for awhile more about medicinal, so I'm thinking i'll be in a decent part of the flick. So be sure and watch for me. ;)


Darker Side of the Moon

For a recap - the day I went in to do the Cytoxan (chemo) a nurse told me I didn't have an appointment for that day and that Dr Reynolds wasn't even sure he wanted to go ahead with the Chemo. I cut my hair, I mentally prepared myself for over a month and that's what happens. We have a meeting with him, I freak out because I'm incredibly angry and he's acting like it's MY fault. He even said to Sean and my mom 'This must be difficult to deal with all the time.' I'm not fucking like that all the time, I am pissed because YOU fucked me over, and are blaming it on me!

So I get referred to Dr. K. We called ahead and asked if he accepted my medical - DSHS, which most people don't. The receptionist said they did, we sent me paperwork and tried to make an appointment today, but the lady said they don't accept my medical. Just wonderful. Even if they did I wouldn't be able to get in until November. Lovely. I need to see someone ASAP. My lupus and ra are currently untreated except steroids, which I'd like to get off of EVENTUALLY. I've been on em for a good two years now.

Not only that but the last time I got pain meds from Dr. R., he prescribed me Hydrocodone instead of my usual Oxycodone. The difference is Hydros have a bunch of tylenol in them, Oxy's don't. The tylenol makes me nauseas, headachey and hurt my body really bad. We have been trying to get ahold of him since Thursday of last week. We've been calling every day and the nurser promises he'll call us tomorrow. but he's NEVER there when we call and he hasn't returned the call yet. He's calling tomorrow and I'm LEAVING tomorrow at like 6pm! This is SUCH bullshit. I'm SO SICK OF EVERYBODY IN THE MEDICAL / GOVERNMENT SUCKING FOR A LIVING.

on a lighter note -

bumbershoot is so close, and doug benson is probably going to help us get into some good shows. i'm terrified i won't get into some of them. i'm not going for music and the comedy tents are usually sold out.


Monday I'm going in to Dr. R.'s office and signing a medical release form for Dr. K. Then I'm calling and making an appointment with him. Hurray.

I'm a little worried about my pain medication. I only got 20 the last time I filled them so they'll be gone soon. :(

Five Days Until It Begins.

Only 5 more days until the chemo starts. I don't even know if we can go to Bumbershoot. We don't have a ride.

Scared. Nausea. Lack of energy. Lack of hair or skin pigmentation. Lack of usefulness.

I made a pretty necklace today. I am proud.

My Doctor is a Nutcase.

That is about as nicely as I can put it.

We went in, already angry. We came out infuriated.

He sensed I was pissed. Basically, he said it was his nurses fault and tried to blow off the fact that HE TOLD ME we were doing Cytoxan for SURE. To cancel my upcoming Bumbershoot trip because I was going to start Cytoxan.

It was scheduled to be the Friday after I got back from Seattle. But while in Seattle, I got an outrageous tooth infection and I had to get it pulled immediatley upon coming back to Spokane. Obviously you can't begin chemotherapy with a big hole in your mouth that hasn't healed at all yet, so my mom called and postponed the chemotherapy for two weeks (August 4). We called a couple weeks ago and asked if we could do it sooner (last Friday, July 28th) because my tooth (or hole where a tooth used to be) healed really fast. The nurse said no, we're doing it for sure on August 4th. My mom says ok, assumes the appointment has been made [even though she never talked to the scheduler], and I prepare myself mentally for a month for this six month intensive chemotherapy treatment where I'm going to lose all my hair and be a hermit during. (Which I cut all of my pretty red hair off - FOR NO FUCKING REASON.)

Sean, Chad and I show up on Friday, bags in hand, in my pajamas, ready to get my chemo. I'm psyched. Let's do it. The head nurse comes out and says she doesn't think my appointment was set for today and she needs to go talk to the doctor and figure out what is going on. After waiting for an hour or more, she comes back and schedules me an appointment for Monday (today.) and that he's not even sure he wants to do the Cytoxan. This is the first I've heard.

Today we went in and had a big blow out. I was so mad, I stormed out and said flat out "I'm leaving right now because i'm really pissed." My mom and Sean were pissed as well. My mom basically told him we were sick of his bs and we're finding a new doctor. Basically, what went down is he didn't take ANY kind of responsibility for HIS screw up, blamed us and his nurses for everything. At one point during the meeting he said to Sean and my mom, "It must be really hard dealing with this." How the FUCK is that supposed to make me feel? I just got done telling him I had extreme anxiety because I have to depend on people so much. Then, right before i left the room - this is was really pissed me off.

He said "Y'know, this has been hard for us. And you have been difficult." I don't remember specifics.. But basically it's been hard for them to help me. I was like "Isn't that what you are supposed to do when someone is sick?" and that was when I broke down and said, "I'm just leaving right now because I'm really pissed off." Sean chased after me, my mom stayed back and kinda yelled at him. She came back out.

He put me back on Methotrexate, a higher dose. six 2.5mg pills a week. i just took them. Wooh can't wait to feel even shittier than I do now. I'm supposed to call on Thursday and figure out what's going on.. But I think I'm just going to call a rheumatologist, Dr. K.

I'm so fucking angry.

I Wish People Would Quit Jerking Me Around

I'm so fucking angry.. I've been so angry since we left the hospital. I'm infuriated. I've managed to have a good time today and laugh through stuff, but my mind always goes back to the fact that every day I get screwed over more and more by the people who are supposed to be HELPING me.

I just want to hit and throw and kick and scream and cry.

I just want to fucking rip somebody's eyeballs out.

I'm so tired of all this shit.

No Chemo All of the Sudden

I walked into the appointment, ready for my first cytoxan treatment. I had a pillow, Sean and Chad were carrying my backpack / cooler.

The nurse walks out and tells me I don't have an appointment that day, and then says that the Dr. "wasn't sure about the Cytoxan."

But he didn't bother to tell me he changed his mind, he just changed it, then made me look and feel like a fool.

When my tooth was pulled [after the Cage concert in July], I asked my mom to reschedule me for last Friday, but when she talked to the nurse (not the scheduler) they said they wanted to wait until after this Friday.

So, today [Friday], Chad, Sean and I get all ready and go to the hospital. We show up and Nurse V. comes out and says, "We're not sure you have your appointment for today. We're trying to figure it out." An hour later I am told that Dr. R. doesn't want to do Cytoxan anymore, he wants to put me back on Methotrexate [which didn't do anything for me last time.]

So I worried, I cut off my long hair for this? What kind of Doctor doesn't even talk to me about the decisions he makes? I am so furious!

Disability Determination Response

So I got a letter today from DSHS. I got excited thinking it was a denial or approval of cash benefits.. But I open it and for the first time, they're actually making me go to a doctor to get looked at about my condition.

"It was determined that we didn't know enough about your condition so we're sending you to this doctor to get a physical exam." The thing is? They're sending me to a chiropractor. If anybody knows what autoimmune diseases have to do with chiropractors, please let me know. If anything, she [the social worker] should be sending me to arheumatologist for a full exam. I'm thinking, since she's made silly mistakes before, that she saw 'arthritis' and automatically thought 'bones', therefore thinking 'chiropractor'. Why does the government hire people who know nothing about their jobs?

I'm beyond tired of getting fucked over by the government.

Pre Chemo Anxiety

the whole ordeal last week has given me a lot of anxiety about myself. i was finally at a place where i was happy with myself. i have friends who make an effort and like to hang out with me, who like me for me, so i started to kind of like myself. now i'm worrying that i am making my friends upset or sad, but i'm being paranoid because i know i'm not. and i know that the person who said that is far more self righteous and self involved than I am. at least I have a reason to be - what's hers?

i just needed to vent. i'm tired of losing sleep over this and ripping my stomach to shreds. everybody's told me a million times that what was said was ridiculous and that i should pay it no attention, but i can't help it.

note: i had an anxiety attack last night.


So I've been an emotional and internal wreck since the things Emily said to me. I hate myself right now and I hope she's pleased.

I'm so terrified. Sean is asleep next to me and I'm crying. I am scared of the chemo, dying, not being a good friend, my parents and family hating me. I want to talk to someone about what I'm going through without being afraid of being too focused on myself.

My tooh is gone.

sigh.. so much anxiety about everything.

lindsey, puffy, richard, ella and sean did amazingly well taking care of me this weekend and i wish i could thank them the way they should be thanked.

i'm sorry for ruining your trip.

Weekend of pain.

so this weekend i went to seattle to see cage and the sword.

friday night i developed an excruciating tooth ache which lasted until sunday day. it deprived me of sleep and i was in so much pain i couldn't go see the sword on sat. night. i went to the er on saturday and spent over an hour sitting in this little tiny room at virginia mason, more like a cubicle, the pain worsening, and the asshole gave me a shot in the mouth of like.. anbesol. he said it would last eight hours, enough time to give me some sleep and antibiotics to take away the infection to in turn take away the pain. the numbing shit didn't do anything, practically. it numbed to a bearable throb, but it was still a 6 or 7 on the retarded 1-10 scale hospital's use. so i went back to richard and ella's house (the people we stay with when we go to seattle.) and continued to be in misery. ella, who is amazing, couldn't tolerate me being in pain anymore and was astonished the er doc didn't write me a scrip for some pain killers. i know now, but nerve pain is probably some of the worst pain imaginable. she called her dentist on call and explained the situation. amazingly, this woman who didn't even know me, prescribed me some hydrocodone. i was soo relieved. i'd make it through this.
then i got the fucking things and i puked everytime i took one. i couldn't keep ANYTHING down. even when i ate with them, i'd just puke it up and the pot wasn't helping the nausea AT ALL - for the first time ever. so it's like 11:30pm and i'm in the bathroom taking a bath for the 3rd or 4th time the pain. Richard is out driving around Seattle looking for 'oil of clove' which EVERYBODY told me was easy to get, but guess what? it's fucking not. then we call university of washington and they have a dentist on call in the er. they say they're closing now, but to come in in the morning.

i did. and i waited 3+ hours. and i finally got some fucking help. i was a ball of anxiety all weekend, especially sitting in that hospital er waiting room with a bunch of sick people with my immune system. i had to cunnive my way into getting seen earlier than some people who had been waiting a long time but i mean, this shit was down to the bone.

first she looked at it and said it was restoreable, which would mean a root canal. then she took the xray and said that decay is down almost to the bone and it may not be restoreable.. and even if it was, they couldn't do a root canal there - they don't have the equipment. i told the lady everything about my medical shit, about my pain killers, how i couldn't keep down the hydrocodone but i take oxycodone regularly and it doesn't make me nauseas. she said she'd have to prescribe me a higher dose because nerve pain is so bad that my reg 5mg dose wouldn't do much. So she gave me 24 oxycodone 7.5mg with 350mg tylenol. worked like a fucking charm. i got some sleep, the swelling has gone down but it sitll hurts.

anyway, i got to see cage. and he stage dived and landed on my head in all his sweaty hiphop glory. i didn't see him jumped, and when his belly flopped on top of my head i realized and went 'YES!!!' and sstarted pushing up. his sweat poured all onto me and mixed in with mine. yes. it was sexual. just kidding, but it was an AMAZING SHOW. I can't WAIT for the next one. unfortunatley camu tao wasn't there, but charlie chan was, and cage was sick and he performed amazingly. brilliant show.

other stories to come later. oh by the way - i'm going tomorrow to probably get my tooth pulled.

Hair today, gone tomorrow.

One of my friends came over tonight and chopped off all my hair in preperation for the Chemo. I don't like it.


I'm really craving a big plate of Chinese food. Something people who work take forgranted - the ability to choose what you want to do and eat. I basically get to eat whatever someone has puchased for me or given to me.

It sucks not being able to just order a meal for yourself when you have a craving. Especially when it's your favorite food and you haven't had it in like three months.

Massage Therapy Not Covered By DSHS.


Even if it is prescribed by a doctor and/or through a physical therapist. The worst part is the lady I talked to kept referring to it as "feel good therapy".

When you are this tense, it doesn't particularly feel good.

My future and my love.

Yesterday at my doctors appointment he informed me that on July 21st I'm going to start six months of chemotherapy called Cytoxan. My hair will fall out, and my immune system suppressed for that long as well.

I'm scared and I know that losing my hair is going to be a ton more traumatizing when it actually starts to happen..

My point is that.. The next six to eight months are definitely going to be hard.. Maybe harder than anything I've ever been through, but I am happy with the fact that I'll have Sean there to hold my hand and listen when I'm angry and frustrated and sad and in the Why Me? mood. He's done an amazing job the last two years, and I don't doubt he will this time.


Chemotherapy. The bad kind. It makes your hair fall out. I told him about the Cage concert next month and he said he'd start it after the show, so I could have fun before I went through the treatments. But he said I can't go to Bumbershoot in September, as planned.

Once a month chemo for six months. So for six more months at least I'm going to be really susceptible to infections. I need to brace myself for what is the biggest risk - getting sick and not being able to fight it. It's how a lot of people with similar disease go.

Today, I was really sad to tell Sean. I've really put him through enough.

I hate to think it, but sometimes I feel he'd be better off without me.

Let's lay out my number one flaw.

When I'm stressed about something of actual importance, I tend to stress and freak out about stupid stuff. Why do I dwell on and mentally freak out about stuff that doesn't fucking matter?

Who cares what kind of outlook you THINK I have, I know what the next six months hold for me. I've dealt with this for FOUR YEARS. I am terribly sorry if I'm a tad bitter, but get the fuck over it. Please allow me a good 24 to 48 hours to be pissed, bitter and fucking murderous. Everybody can't have a positive outlook ALL the time. I'm not Mother Teresa, and I've never claimed to be.

It isn't you who has to worry about germs because the smallest of infections will land me in the hospital. It isn't you who is already practically confined to the house because you're just too tired to get dressed, get somewhere, stay there for 1+ hours, and get back home. Just those menial everyday tasks that everybody does, exhausts me. I think I do pretty good with not being crabby ALL the time. Leave me alone.

So many times today, I wanted to just shut off all the lights, shut the door and just sit alone in the darkness. I've cried a lot today, my eyes are so heavy and the bedroom is still so hot.

Sitting alone on the front porch at dusk I started thinking about how I'm not ready to leave Sean. I'm not ready to give up on life. He's my reason for keeping going. I think our relationship is incredibly special. I love him so much and I want to spend more time with him. We've got trips to take, concerts to see and comedians to meet.

I'm so worried about medical next year.

How am I supposed to live on $400 a month, IF I GET SSI. I'm going to be forced to be a child for the rest of whatever time I have left.

"Evan's Syndrome is serious, rare and has an 18% mortality rate."

I'm never going to be able to buy my own clothes or groceries or anything! I won't be able to live on my own. I really feel like I just bring everybody down. I don't know why anybody even wastes their time, sometimes.

I want to just give up caring or expecting or anticipating anything. I just get disappointed or disappoint.

Sorry I'm such a pain in the ass.

Doctors Visit

I'm beyond tired, just from the visit. It's so exhausted getting jerked around constantly.

Meds I'm currently taking: Seasonal, Prevacid, Cephalexin, Prednisone, Naproxen, Plaquenil, Oxycodone.

Tomorrow I need to call Dentists and see if they take DSHS medical for adults. Most places only accept it for children 18 and under. Which means that adults are forced to get their teeth pulled instead of fixed. Also, I need to call physical therapists and see if they do massage therapy or accept DSHS.

I am so tired today, yet so much to do. It never ends.

I've been in such a mood lately.

Just generally agitated. I keep taking it out on Sean, then he'll snap back and it's a cycle. We both usually snap out of it after a short time, so it's not that big of a deal. It just really bothers me that I'm so irritable. I don't want to be, and I know it's ridiculous to get irritated about these things, but I really can't help it.

I just feel like I'm a giant burden to everyone today. Every other day I tell myself I'm not going to depend on people anymore, but I'm forced to time and time again. It makes me feel terrible to go out with friends and to not be able to pay for dinner. They always pick up the tab. I really want to contribute.

I love Sean a lot. He is amazing to be so patient and supportive of me, despite the stress I put him under.

We're back from the funeral.

I'd never been there before. My general impression? Yech. The lack of trees there makes me appreciate Spokane's beauty more than I used to.

The service was sweet and sincere. I cried, even though I'd never met Art. Listening to Sean's aunt talked about him so sweetly coupled with the fact it was the day after Father's Day, made me think about my dad. I cried a lot for him.

"Don't got to apologize, for the way I feel. Nothing can stop me now."
- Sun Spot by Nine Inch Nails

Oh how I art sweaty.

It's shocking I'm still a little chubby with how much I sweat. I love like a pint a day. I was pretty tired after we woke up but I dozed for 10 or 15 more minutes.

"Everyday, it's a dream, it's obscene,
I wish I was there, far away,
Havin' fun in the sun, my feet in the sand.
But, here I am, freezing cold, shovelin' snow.
But, why should you care?
I wish I was there. I wish I was there.
It always begins, and never ends.
Winter breeze, anti-freeze,
Screamin', "Please, I wish I was there."
- Caipirinha by Peeping Tom

Paper Beads

basically just cutting long triangular strips of magazine paper. And my back and shoulder started hurting about 5 to 10 minutes later. I kept pushing, but the pain got so bad, I had to stop. I live a boring life. Doing stuff hurts, so I don't do much stuff.

Sean's grandfather died so we are driving across the state with his parents for the funeral. It's goign to be difficult going on a trip with how I've been feeling. I have motion sickness, and it's uncomfortable to sit in one place for a long period of time.

I'm so tired. I took all my medications at like 2 am, then went right to bed. Big mistake. I woke up 4 or 5 hours later feeling nauseas. Thankfully, I made it to the toiler on time, but man, did it taste bad. Just like delicious pills. Yech.

At this very moment, I'm feeling very tired and my joints are achey. Mostlymy knees and shoulders and fingers and arms and head. So.. Only like 75% of me hurts right now. The other 25% is probably just too tired to give a damn.

I want to help

Somewhere in the back of my mind I feel like writing about what goes on in my head. body and attempting to get on disability. Could really help some other people who are going through something similar. Just to let them know I've been there. I am there. So far I see no way out but I chug chug along. Is it conceited to feel like you could make a difference? I think - who cares? Then I realize that there are plenty of people who would benefit from learning of my struggles. Friends and family members of a young adult battling any kind of serious illness could benefit from reading my entries. See how someone with Fibromyalgia and Lupus.. How their brain works.

I wish I could figure out something to do. I just don't feel good.

Potential Bumbershoot 06 Trip?

so for those of you who don't know who tinkle is.. it's only a group made up of three of the most amazing comedian / performers ever. david cross (arrested development, mr. show, etc.) h jon benjamin (home movies, dr. katz), and todd barry (of just being badass todd barry fame.) called Tinkle.

well, they're slated to perform in seattle at bumbershoot this year. sept 2, 3 and 4. i'm thinking the chances of sean and i going are really really high. hopefully i'll be on disability by then and i'll have some me money saved up. plus, since the festival is like a week after my 22nd birthday i bet some awesome family member would contribute to the tickets cost. three day pass is $70 if we get them in advance. totally worth it though, for how many comedy acts perform. we probably won't even see much music, especially considering there isn't anybody i particularly want to see. atmosphere is playing, who i'd like to see. the blood brothers are playing who i know sean would like to see. that's all i know of right now. plus the possibility of patton oswalt or brian posehn being there is likely.. i think they've both been there before. maybe the comedians of comedy will perform as a whole.

the sooner i go to bed, the sooner i get to eat delicious amazing pho which i haven't had in like three weeks and i'm dying without it.

Why Doctors Piss Me Off

So this is how the day began...

Sean and I woke up at eight am and I was completely drenched with sweat. My tshirt was soaked through and the sheets where I was laying were damp. I still felt sick from a cold I spent last weekend recovering from, and I had a doctor's appointment to go to at 9:45. I tried to convince my mom that I didn't need to go. I really just wanted to get in the shower and wash away the sweat, smoke, and fall asleep again. Sean even told her he'd stay home from work and take care of me, but they still had to see me. This was Sean's first visit to the doctor with us, and I don't think he'd be able to stand another. Regardless, him being there with me really meant a lot and made the whole process a lot easier to deal with.

I've been having these night sweats for a couple weeks now, and I've also lost about 10 pounds in two and a half weeks. I just haven't felt like eating anything.

Anyway, the people who draw my blood don't get up to the clinic until I've been waiting for 45 minutes. Then it's another hour or more until they take me back to the exam room. We wait another half hour to 45 minutes while he is with the patient before us, then he comes in and tells me that night sweats are common with Hodgkins, which they thought I had originally. (Hodgkins is a very treatable type of Lymphoma *lymphatic cancer*) and that we need to get a CT scan or an MRI immediatley. Then he says he's going to go make the appointment and ends up wandering off for forty five minutes, leaving my mom to stew and be really scared and upset that we're being told I have something ELSE. He really treated it like.. It wasn't important, by just forgetting about me. My mom is pissed, because by now, we have been there for three hours and we haven't heard from anybody in an hour. She walks out and asks the nurse if she's seen the doctor, and of coruse, no they haven't. Then she comes back and tells us that they couldn't get me in for a CT today, that I should go home and they'll make the appointment and call us.

While we're making the appointment for next week, one of the nurses in the front of the clinic gets me a CT scan THAT DAY at 3 pm, but they can't figure out what kind of contrast dye i need to have in my system before the actual scan, so they can see certain things brighter. It's this massive jumble of confusion between the nurses, the doctor and radiology and I don't even know what the fuck is going on, except that I haven't eaten since midnight the night before and it's 1pm now. I'm cranky, exhausted, and I need some pain meds, but I'm not allowed to eat anything because I'm not supposed to before a ct scan. FINALLY they tell me at 3 that I need to drink contrast dye, over two fucking hours. TWO HOURS. Of more NOT eating. Two more horus of hanging out the hospital because the assholes couldn't get their shit together. Finally I get everything done with and I got to go to Sean's hosue and rest for the rest of the night.. but I'm really getting fed up with this clinic forgetting about me and acting like I don't exist.

One of the nurses, while my mom was crying, said "You know what you need to do? Throw darts at his picture, like we do." Why don't I find a new doctor? He's the best oncologist in the vicinity. He knew the guy who discovered my disease.. And he's stubborn. He's helped me before.. He is just a huge quack and I'm really getting sick of it. It's such bullshit that they get away with treating me like complete crap everytime I'm there. It's always something with them, either they forget to let the nurse know I'm there to get checked in, so I don't get checked in for 35+ minutes, or the Dr. forgets about me, or the nurses don't care.. Especially when I'm staying inpatient or outpatient to get treatment, most of the nurses just don't give a fuck. There are two nurses who are really, really attentive and nice, but the rest are just.. ridiculous.

Update from the Hospital

Not to worry anybody, but this is the best way I can let people know what's going on with me without calling everybody. Besides, half of the people this is directed at don't read it and won't ever read it so who cares? :P

I'm sitting in the Teen Lounge at the Sacred Heart Children's Hospital..

Lately, I've been waking up just drenched with sweat. My t-shirt was soaked all the way through today when I woke up.. And I really didn't want to go to my doctor's appointment. I really just wanted to stay in Sean's bed and just sleep away the sweat so I wouldn't have to feel it. But I was convinced to go.

I guess it's a good thing I did.. Because my doctor thinks I may have Hodgkins Lymphoma now.. (again.. This is what they originally thought I had at the very beginning of all this...) I've been here since 9:45 am.. I've been getting jerked around by the doctor all day long and have spent way more time here than I actually needed to. If he had given the proper directions, I could've been done with this a long time ago. At least I get to go to Halo tonight.

I'll give a more detailed update at another time, I don't want to go into the whole thing while I"m here.. Sean is passed out on the teen lounge couch while I drink this dye crap for my CT scan and I want to put together a puzzle.

I Really Feel Like Giving Up

I would really like to have friends that I could talk to when I'm completely freaking out.

I reach out but everybody is caught up in their own stuff. I guess I can't blame them, but I'm allowed to feel hurt that nobody gives a shit.

Valentines Day

On Monday, the 13th, I went to have my weekly needle poke and switch up with the ol' doc-a-roo. I'm having a Lupus flare, you can tell from the amount of pain I've been in constantly, and the massive rash on my face. I have these tiny inflamed bumps on my cheeks, nose and chin. It gets really itchy sometimes, and makes my face really flushed. A famous record producer just died from Lupus.

Anyway, the doctor told me that he is going to start focusing his attention more on the Lupus, rather than the RA, since it's clear I'm having a flare. I'm also starting a new medication called Plaquenil that is widely used for Malaria, but also RA and Lupus. So, hopefully things will start to look up. It is't supposed to even start working for at least a month though. At least one more month of feeling like shit and taking it easy. My joints have been hurting so bad I haven't really been able to crochet or play video games much.

On Valentines Day, Sean got up and went to work, and I stayed in bed because the side effects from the steroids were really bothering me. Then he showed up with an awesome snack grab bag: 2 hours later with a rose, a Mountain Dew, a Pepsi, a bag of Kettle chips, Tootsie Pops and a Milkyway Midnight. Then we just laid around watching Mr. Show. It was awesome.

Kids Are Dicks

I slept for most of the day, and I finally dragged myself out of bed to go up to Sean's so I could see the place he just moved in to. I am exhausted from the new medication they put me on: MMF (Cellcept), an immuno-suppressant, which means I can get sick really easily and it would be very difficult to get over, if I did get over it. Basically, I have to wear a bacteria mask when I get on the bus from now on, because people are so damn germy and I can't risk getting sick. It's either that or stay locked up in my dark basement.

Yesterday was the first time I had to wear it. Nobody on the bus even looked at me twice, but when we got to a red light a van full of teen girls pulled up and started gesturing, laughing and pointing.

Still miserable, but getting better.

I'm still miserable but at least I have all my meds now. My doctor is mean, I have to keep taking the medication that's made me have the worst diahrea for the last two weeks. I have to keep taking it for maybe another month!! :(

I'm so exhausted and pained.

I am very miserable right now.

basically, ive been on the toilet for a week straight. my doctor claims it's food poisoning, but wtf? a WEEK? it hurts SO bad. i have been drinking water and TRYING to eat but not getting much down.

this is awful. im so sick of this stuff.