Happy birthday to me. (and my mom.)

I got my mom a Sony DVD player for her birthday and wrote her a letter expressing my thanks to her. It's pretty sappy. I really love my mom, she's helped me through so much.

I love my dad and miss him so much. I wish he were here in physical to see me succeed. I know he can see me somehow. Not through that heaven BS, but.. somehow.

I Can't Handle This

I'm so tired of this doctor back and forth bullshit.

I used to be scared of asking for pain medication. Then I talked to the nurse and she told me I shouldn't be, because I have a legitimate reason to want them. So I do, and I take the right dosage and everything and I call to ask for more and they tell me that I am taking them too much. They gave me 40 pills and I took all of them in 15 days. that's like 2 or 3 a day, and it says to take them every 6 to 8 hours.. How am I taking them too much?

God I'm so tired of being made to feel guilty about my health problems. It's not fair enough I have them but jesus!

They give any drug they want to people with supposed "back problems", but when I need them for my legitimate and proven illnesses, they don't do anything.

One Year Anniversary

So it's been one year with Sean. A very very happy year. One of the happiest and less-stressful years I've ever had.:)

We didn't do much this weekend.. Just stayed inside, away from the sun and hung out.

I had to take the chemo this morning so I can't go to our usual Monday Halo Nights... I really hate missing it, because I love to play with a big group. I get to take the 'antidote' in another four hours, hopefully it will make me feel a lot better.

I guess I don't have much to say.

Lupus Breaking On Through to the Other Side. This side.

I went to the doctor again today.

The x-rays of my spine turned out okay. They say that the back pain has a lot to do with posture, and that I have to do Williams Exercises with a physical therapist to improve it, and it will help the pain and my posture. But this isn't exactly great news. At least my back isn't completely fucked up like my mom or grandma's, but he said that I DO have some form of arthritis, and that some Lupus cells are trying to push themselves into my system. They are right on the outskirts, really really trying to get in there and infect me with it.

The course of action is a very low dose of a chemotherapy called Methotrexate, which I've taken before. The only real problems I had with it was tiredness and the sun. Since it's such a low dose, my hair won't fall out.. But if I don't respond to it very well (like last time.) then they're going to have to increase the dose, and that may make it fall out.

I told him that I'd been looking for a job, but now I wasn't sure if I should and asked what he thought. He said he wasn't sure either. Meaning, no. I shouldn't find a job. I cried and told him that it's really hard for me not to work. I've been working since I was 16, and that this is one of the hardest parts about my illness. I love working and being self-sufficient and making money and independent and helping people. It makes me happy. He said he understood, he was the same way. I told him I wanted to go to school to be a medical transcriptionist - but I don't have the money for it. He found a social worker in the hospital to help me out with things.

He told the social worker that I was ready to be on disability. Two years ago when I applied, he yelled at me for applying.. He said, "I will never say you're disabled, so don't ask me to.". I didn't even mention it today. HE told HER that it was time for me to get on it. I need to go print off the paperwork and fill it all out. The social worker is also going to help me find a way to pay for school. When I get on disability, it shouldn't be too much of a problem, since I'll have some income.

The thing I'm really worried about is backlash from people for being on disability. I've had people yell at me for applying and tell me that they shouldn't have to pay for my problems. My response was always, "Would you rather me die?"

I want you all to understand that I need this. I'm not one of those people who get on disability because they're lazy and addicted to painkillers. I can't work right now. I need this. Please don't feel like I'm just taking from your taxes because I'm lazy - you couldn't be farther from the truth if you think that.

Sigh.

A bad couple of days.

This morning I get home, and I start having an anxiety type thing because of some stupid argument with my mom. Then this guy I was friends with in high school, tells me that the reason I'm stressed out is because I haven't found Jesus. Go fuck yourself, dude.

Then I find out that I really annoyed someone the other night by making a joke. I try to be as nice as possible, but y'know, it's just not good enough. I'm not even going to bother with some people anymore. Why waste my time?

School Records

I just got my grade school records from when I was in the third grade.

Apparently, because I have a lisp, I was put in the slow learning classes from third grade on. That is so screwed up, it didn't impair my ability to learn whatsoever! I may have been a bit more antisocial and been picked on more, but that is just encouraging people to behave that way. My tongue is just abnormally larger than other peoples - I don't even want to hear the joke you're thinking of making.

Lab Work

Last week I was told by Dr. Reynolds that I was to come in today and get a lab draw only. He told us we could either go up to the office and they could call someone up, or we could cut out the middle man and go straight to outpatient lab. They even tell us directions to get to the outpatient lab office.


We get in there and she asks us all sorts of questions, treating us like we're complete idiots. She gets on the phone for 10 minutes, then comes back to us and says 'They say that the paperwork is for Lab & Exam, so they want me to take you up there and just to the lab draw up there." The lady can't get a needle in my vein, so it rolls around and hurts really bad. She decides she's going to get the blood out of my hand. Alright fine, whatever. I just don't want to have to deal with the vitals nurse who treats me like I'm nine years old.

We get upstairs and he asks me all sorts of questions and basically says we don't have to stay for an exam and we are released, still slowly leaking blood.

Doctor Time

I got up at nine this morning to go to the doctor. I had a major headache and felt a bit nausea and just overwhelmingly like shit. I get to the doctor's office, and let me just remind you that I still see a pediatric doctor, because he's the "best oncologist in Spokane" and he actually knew the man that discovered Evans. I get there, and I ask if I can have a room so I can lay down, if available. They tell me that none are available. I sit down while my mom runs back by the rooms to get coffee and one room is completely empty. I got my blood drawn and my vitals by the nurse then I go back to the waiting room with my mom. She turns one of the regular chairs around so that I can stretch out and lay down in one of two waiting rooms.

Then these two little red headed kids come in. The boy is about 10 and the girl is 7 or 8. They are so loud and bratty, and their parents are nowhere to be seen. At one point, I hear the boy say, "Get off of me." and then I hear the little girl say, "You like me on you, remember?" Immediately my mom and I look at each other and start laughing hysterically to ourselves. Then their mom comes in, and the kids are still really loud and I'm still laying down feeling crappy, and the mom doesn't tell them to be quiet at all. She doesn't tell them to shut their traps at all. Not only that, but the door to the waiting room is really loud when it shuts and everybody came in staring at me laying down, but didn't have the common courtesy to shut the door like a polite and normal person.

So I get called back and explain everything to my doctor. My blood counts are fine, which is surprising since I've felt so terrible lately. He tells me that my feeling terrible is probably still from the Rituxan (chemo) that I had a month ago. Apparently I won't feel normal again for at least another month. My mom wants to go for disability again, but my doctor doesn't think I am disabled. He doesn't know exactly how I feel all the time. I actually start crying because I'm so tired of this shit.

I got home and crashed, and when I woke up I still felt awful with this terrible headache, so I got a hold of Sean and let him know I couldn't go to Halo night.

She's On A Roll

My mom and I are watching TV together, and she looks over at me and tels me that my stomach looks really fat and I've gained weight and I look pregnant. Thanks mom! I'm 5'7, 140 lbs - Sounds about normal to me.

Needlessly Cruel and Ignorant People

A lot of high school drama involving a "feud" between myself and multiple members of the school band. I was never really friends with them or said much to them, but suddenly they started accusing me of things that were completely false. They took someones relationship and misconstrued it to their liking. They had never really talked to me about it to my face, only cowardly said cruel things behind my back. One of them was a boy who, for no reason at all, called me a "dyke". While eating lunch, I asked him why he would say that about me? He said, "Because everybody knows you sleep around!" Of course, I was a virgin at the time.

After high school, a friend of mine has still maintained contact with them, though reluctantly. He always considered one of them an uptight, demanding and controlling woman. I haven't spoken or even though about this group of people in two years. The friend of mine ended up mentioning something about my having to go through chemotherapy. Her response? "Karma." with a pretty little smile.

Doctor Ridiculousness

So, yesterday at the hospital we discussed the possibility of my getting some pain medication for this week, since the Rituxan has been getting worse and worse.

Usually, when we ask my 70 year old doctor to fill out a prescription for me - he manages to screw it up somehow. One time he wrote to give me 7.5mg of a certain pain medication. We get to the pharmacist and he tells us that 7.5mg of that particular drug doesn't exist. My mom had to go all the way back to the hospital to get the doctor to write something else, while I'm at home in pain right after surgery.

Well, since he left before I did yesterday, my mom had to go to the hospital and pick up his prescription for me. He's giving me Oxycodone which is a very high prescription drug that a lot of people get addicted to and abuse. Therefore - he can't call it into the pharmacy, he has to write it, and it needs to be physically handed to the Pharmacist. Well, my mom brings it to the pharmacy and the Pharmacist - Ron, a super old guy who's really nice and we always BS with, tells us that Dr. Reynolds, the dingbat, didn't SIGN THE PRESCRIPTION. So my mom is stressing out, because she has to go back to the hospital to get him to sign it then go back to the pharmacy then be at work by 3pm.

I was bitten by a dog

Here's the whole story, since I never really elaborated on it.

I had started noticing that neighborhood dogs have been running free. Once, I was walking by a house that was three houses away, across the street. And a big white dog started to approach me, showing his teeth and obviously looking for a fight. I stood very still and called my mom on her cell phone so she could help me get him away. She pulled up in the car to separate us. We called animal control. There's a leash-law in Spokane that means dogs can't be off a leash unless they're fenced in, and this guy wasn't. So, we called animal control, because I walked that way very frequently to catch the bus and didn't want any more confrontations with Mr. Meanie Dog.

Then a couple times when I was walking to or from the bus stop, passing by the house that is three doors away from my house on the same block. A young girl (Her name is Misty.) , about my age, is standing in her doorway with the screen door open, kinda half-calling for her dog to come in the house. The dog is in the yard barking, and he is MEAN. She is just standing there, while he's barking at me and scaring me, so finally I told her "Quit being fucking lazy and come get your god damned dog away from me." or something along those lines. After that happened, I'd seen her doing the same thing. Fucking laziness.

So on June 16th, I get off the bus from work to come home, and I'm walking up my street, and Misty is standing outside with her dog, who is barking fiercely, and a friend who is getting into her car. Misty is in the yard with the dog, who runs at me.. So I stop - it worked last time. My thoughts are, if I stay still maybe he'll leave me alone. He then bites me on my right ass cheek - close to my upper thigh. Misty is doing nothing to try and get her dog away from me. Finally I said, "Get your fucking dog away from me right now, he just bit me." She ignores me, and continues to talk to her friend. I yell again "GET YOUR DOG AWAY FROM ME OR I'M GOING TO CALL ANIMAL CONTROL." This girl, does she apologize for her dog biting me? Like a normal person would do? Oh no.. She says these exact words, "Do something, bitch." I say "Oh don't fucking worry you little bitch, I'm calling animal control and getting your dog taken away from you."

I storm home, take off my pants and I see that I have a bloody bite mark - I have photos. We call animal control, and the bitch avoids them to the point of her not getting in any trouble and the dog not being isolated or anything. She gets away with it.

The same dog bit the mailman a few days ago. Misty fought with him about it as well. I'm taking this stupid woman to court.

STATUS UPDATE

I just got out of the hospital for my last Rituxan treatment. The first week was awful because I had two nurses who are lazy, cackling hens. The second and third weeks, I had different nurses, who were wonderful. Today I had the same nurses from the first week and had problems again. I'm going to write an evaluation.

Dr. Reynolds told me that my Neutrophil's (white blood cells) are pretty low, so I shouldn't be playing 'tackle football' or anything like that. I'm supposed to just take it easy. The Rituxan has been increasingly more tiresome and painful on my body, so we requested some pain medication to take home. I have another appointment on Friday to be checked up on. I won't know if I have to continue treatment until then.

Dream Entry

I had a couple strange dreams on Saturday night/ Sunday morning, Mother's Day.

The first dream was about Les, my step-dad. I had woken up in the middle of the night and went to the basement door and he was down there, drunk, mumbling about how angry he was at me and what a failure I am. The next day he said he was leaving my mom because he didn't like me. I woke up, then went back to sleep.

I then had a dream about my dad. It was my house, but the rooms were arranged differently. It seemed as though we were really poor. I got up at night again, and went to my mom's room. There were two beds, and a TV. My mom was in one of the beds snoring.. Then I went to the kitchen and looked out the window to the back yard. The garage light was on and the door was wide open. Then I saw my dad outside by the big tree pulling his hair back and my mom said something about him wanting to wax his head. Then I got into bed with my mom and I looked out the door and my dad was sitting in the living room in the semi-dark glaring at me. Then I woke up.

It doesn't sound nearly as awful now that I type it all out. But on Sunday morning.. I cried and cried. Sean held me and we talked and I felt better, but man.. I felt so awful.

I keep waking up in a sweat. I hate it. Chemotherapy sucks.

Avoiding Tomorrow Like My Plague

'm to be awake at 6:45 am tomorrow, so that I can go to the hospital, have a hole (probably a lot more) poked in me, and have a bunch of poison run through my blood. Pretty awesome, eh? So not excited. The steroids have helped my lymph nodes go down in size, dramatically, although the huge one under my left arm is still bigger than usual.

Evans Syndrome Relapse and Chemo

So I just wanted to let everybody know that I went to the doctor this morning, and my Evans Syndrome is back. This weekend I'll be taking a high dose steroid to make my immune system stable, then on Monday I go in for an 8 hour chemo treatment. The three Mondays after that as well.

I Feel So Stuck

I feel like I'm stuck in time in my current station in life.

I have no job, not many friends, no talents, no hobbies, nothing to show for my life up thus far. I have a boyfriend who I care about very much, and who cares about me too. For that I'm lucky. I'm lucky for the few friends I have.

But I know that I have one thing I can always count on. My body failing me and betraying me. For late April to come along and make me stress and cry and think about how I'll never see my dad again. I've noticed that the lymph node underneath my left arm has been steadily growing larger and larger in the past few months. It's getting so large now that it's extremely uncomfortable to relax my arm at my side, to get comfortable in any position, to sleep. It even throbs sometimes and hurts. I haven't been feeling particularly well, but not horrible either. I haven't noticed if I'm feeling like my counts are up or down or what. I'm really worried about my lymph node and I discovered that there's another one right beside it that is enlarged, and another one in my neck which is smaller than the ones under my arm, but still is pretty big. I made an appointment with Dr. Reynolds for Friday. I'm so scared.

I'm stressed out, because I don't even know if I'll have medical insurance next month. I have medical bills that haven't been covered by my medical coupons. I have a credit card bill I haven't paid in six months because I can't afford it. I don't have a job, because I can't get around town to apply, and I'm too scared to even apply because what if I have to spend the next six months in and out of the hospital again? I don't want to put Sean through it, I don't want to put my mom through it again. And I sure as hell don't want to go through it again.

All I want is to go back in time and somehow figure out how to not get this disease, so I can do well in school, then go to college, live by myself, have a good job and not constantly worry about money I don't have. I want to not be insecure and paranoid and depressed. I want to make friends. I want to not be obnoxious and annoying and depressing.

Lymphnode-tacular.

I feel like I have elephantitis.

I have a enormous lymph node, literally the size of a fist, underneath my left arm. It's extremely uncomfortable for my arm to be just resting normally at my side, and it hurts sometimes. This usually isn't a good sign.

Friends Make Me Smile

Every Monday, Sean and I go to our friends' house and play Halo 2 with like 10-15 people. It's so much fun. Last night, I couldn't go, since I'm so sick.

When I talked to Sean, he told me that they made me a get well card last night.:D How cute is that?

I can't wait to see it. It really makes me smile to know that they care about me!

Still Pretty Sick

Last night, Sean came over. We didn't hang out for long, but it was comforting having him there to snuggle up to as I slept.

I swear, he's the sweetest boy ever. This morning when we woke up, I was miserable.. He wrapped me in his arms and said that he wished I wasn't so sick all the time, and that he likes to think it's his job to make me feel better.

Back To Work

My first day back to work in eight days, and I feel awful.

I threw up twice at work, once semi-in front of a customer, but he didn't know what I was doing.

Been laying in bed for a couple hours with a major headache, and I think I've developed a fever, so I just took a bath. Now I'm cold and my head still hurts.