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.

Cravings!

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.

Period.

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.

Cytoxan

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.