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.
by Miss at 6/29/2006 05:10:00 PM
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.
by Miss at 6/27/2006 10:04:00 PM
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.
by Miss at 6/27/2006 05:07:00 PM
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.
by Miss at 6/26/2006 09:29:00 PM
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.
by Miss at 6/22/2006 11:30:00 PM
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.
by Miss at 6/22/2006 06:58:00 PM
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.
by Miss at 6/22/2006 04:57:00 PM
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.
by Miss at 6/21/2006 11:15:00 PM
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
by Miss at 6/20/2006 04:51:00 PM
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
by Miss at 6/17/2006 12:07:00 AM
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.
by Miss at 6/16/2006 11:30:00 PM
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.
by Miss at 6/16/2006 12:04:00 AM
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.
by Miss at 6/15/2006 12:03:00 AM