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.

anxiety, paranoia

I'm turning back into my old paranoid self again

the prozac isn't helping, it seems to be making it worse.

i take everything to heart and way over analyze..

siggh.

Crazy Doctor Says

The doctor..

he said that we've been targetting my b-cells, when in fact my t-cells are what need to be targeted. he thinks that my t-cells are elevated and that's what is causing the arthritis pain.. he's going to try to develop a plan to treat me and i'm going in on the 28th to find out what exactly we're going to do. the basic gist is that we're giong to lower my t-cells, which is going to make me extremely susceptible to illness, and treat the susceptibility as well.

you usually hear about t-cells being affected by HIV patients.. usually they are really low. for some reason, mine are high and causing arthritis, lupus, etc.. he's going to lower them dramatically and try to boost my immune system using other meds..

scary. very scary.

More Chemo.

Well..

I've been taking the Methotrexate (chemo) every week. Anywhere from 17.5 mg to 25 mg for a few months.

Today the doctor decided to put me back on Rituxin. Basically, the methotrexate isn't helping with the RA pain & inflammation, and it's not curbing the possibility of Lupus. In fact, the bad news today is that Lupus' door is open now. Before, it was opening. Now I basically have it.

Lupus, Rheumatoid Arthritis, Evans, Raynauds.. What the fuck is wrong with my body?

The big difference between the Methotrexate and the Rituxan is.. I take the Methotrexate in pill form from home. The Rituxan is purely by IV only, which means I have to spend at least six hours (more like 10-12) in the hospital where the nurses don't give a fuck about me.

He wants me to come in on Monday, but Monday's are really busy at the clinic and I know I won't get the proper attention / care I'm going to need. A couple other factors - my mom is going to be working both Monday and Tuesday, so nobody would be with me - and that's just not possible. The nurses are so un-attentive that I really need someone to be there with me. I'm going to need help walking to the rest room, getting food and drinks, etc. And I need someone there to slap the nurses into shape when they're being jerks - which is usual. Sean would skip work and stay with me if I asked him to, but I don't want to ask him to do that. Plus Monday is Halo night, and I hate missing Halo night. We asked if we could push it to Wednesday and he said that if I feel good on Monday, then we can wait. If I feel like shit on Monday, I have to go in. He gave me a big boost of steroids, again, which means I'm going to eat like a horse this weekend, but the steroids will probably make me feel okay on Monday.

Blehh. I'm tired.

I'm done getting upset about this stuff. It doesn't do me any good to cry about it..

The truth is, he wants me to be on Citoxin - which is a pretty harsh chemo. My hair could fall out, I'd be about 20x more nauseas than I already am..

I'm just one step away from having to do the chemo where all the hair on my body falls out.. That's terrifying.

I'm so tired of being broke.

Somehow I have coellected about $25 in my bank account, just from my mom putting money in, paying bills, etc, and it just collecting and adding up to that much. So I am VERY excited to have money to spend on my Marla Singer costume for the party tomorrow. Well. I lost my ID and I have to go to a bar on Saturday so there's $15 of my $25 that I have to spend elsewhere. $10 isn't going to get me a costume.

I'm so frustrated. I can't ever do anything nice for myself. Because I don't ever have money Because I am sick and disability doesn't care about me, and cares more about ALCOHOLICS than about someone with two autoimmune diseases that are CONSTANTLY eating away at my body.

Disability Response

Keep in mind it's supposed to take three to six months to get a response. They received my information on 9/22. I got my response today. Less than a month for a decision. LOVELY.

"We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, training and work experience in determining how your condition affects your ability to work.

You state you are disabled due to fatigue from chemotherapy treatment. The medical evidence indicates you have had a flare in symptoms in 2005 for Evans Syndrome and are receiving treatment. You receive pain medications for complaints of various joint pain. The medical evidence indicates you are limited to performing tasks where you lift very light objects and where you are able to sit a majority of the day with regular break periods to adjust position. Although you have not worked significant, based on the medical/vocational evidence you are determined capable of performing work within the national economy that is within your limitations. Therefore, a period of disability cannot be determined."

What the fuck? They don't even MENTION the RA, and they say I'm receiving treatment for EVANS right now, when I'm NOT. I'm receiving treatment for RA. Do they not know how to read, or what?

It's just frustrating that people with legitimate disabilities get denied and have to try over and over and over and over again to get a little help.

Meds List

These are the medications I'm taking and for what.

Methotrexate - I'm taking anywhere from 15mg to 25mg a week of this chemo to help my Rheumatoid Arthritis. It make me dizzy for a short period of time, makes me nauseas / no appetite, tired, weak.
Prednisone - 10mg a day. This is a steroid. For most people it suppresses your immune system, but since my immune system attacks itself, it helps my immune system. It also helps with inflammation of my joints. The side effects are horrible though. It helps me eat, which is a nice reversal from the Methotrexate, but it also makes me gain a lot of weight. I'm up to 153 now, and my usual weight is pretty evenly 137. This is in a span of two months.. It also gives you what is referred to as 'moon face'.. Have you seen Jerry Lewis lately? Yeah. He took a LOT of pred. It also makes it difficult to sleep, and it's beginning to make me really antisocial, lonely, paranoid, and just generally annoyed at people - which really sucks. Usually I love going to Halo night, but last night I was just uncomfortable and annoyed.
Oxycodone - 5mg, twice daily. I usually cut the pills in half and take them 4 times a day instead, though. Which - the doctor would kill me if he knew I did that, but the pills just don't last long enough to help with the pain. If I take a whole one it lasts like 3 hours, then what do I do for pain the rest of the day?
Seasonale - birth control.

For awhile I was also taking Sudafed because I was sick.. Bleh.

Doctor Doctor Gimme the News.

Well, I called three days ago to let them know that I have a cold and that I should probably come in. The nurse told me to see my primary caregiver. Who is? Them. Idiot. So, I just don't do anything. I suffer through the pain and take my pain killers. I call yesterday to tell them about my weirdo tongue thing [thrush], my cold, etc. that are driving me insane. So, they tell me they can squeeze me in today.

I go in there, and I have to get poked THREE TIMES and endure intense pain because the stupid phlebotomist can't get a needle in my vein because there's so much scar tissue and my veins are really rolly and sensitive anyway. I sit there and endure her sticking the needle in my arm, moving it around, pressing her finger down on where the needle is, etc. TWICE. ONCE IN EACH ARM. Then, she has to do it in my hand.. So she puts a turnicate around my wrist, and I feel like it's going to explode.. I just want to scream 'FUCK FUCK FUCK OWWIE FUCK' and I'm bawling and crying and I have four people in there around me telling me to breathe like I'm a nine year old. I've done this six thousand times in the 4 years, it's not like I'm scared of the needle.. IT HURTS WHEN YOU PUSH AND TOUCH IT AND MOVE IT AROUND A LOT.

So I finally get to see the doctor and I tell him that I took a few extra pain pills because I was sick and coughing and couldn't sleep because I was in pain, but he completely takes it the wrong way and tells me it's not a cough syrup and yells at me. then he yells at me because i should've been in three days ago and i should know not to talk to the nurses because they don't know wtf they're talking about. he was in a really shitty mood.. the nurses piss him off all the time.. i'm only to call his cell phone now because they treat me like complete shit.

Growing up, Getting out.

I just want out. I just want away. I want away from everything, right now. I honestly wish I could take a trip somewhere by myself. I'd love to go to the Oregon coast, or to go visit Eva for a day or two. I need a change of pace. I need to get away from not only my mom and family and this house and this city, but I need some me time. Some time where I can get a little perspective and some independence.

Trip to Seattle is this weekend, I'm hoping it helps. I'll have my fabulous boyfriend and fabulous friends, so I think it will be fun.

I don't think you guys have any idea how much Sean is a miracle in my life. He's the best thing that's ever happened to me, and I'm thankful everyday for him. He really means everything to me. I am glad we're planning on spending at least the next few years of our lives together - we'll see how it goes, right now it's going strong after a year.

Pain Medication & Crazy Doctors

So two weeks ago, at my last doctors' appointment, he told me I couldn't have any more pain medication. He insinuated that I've been taking too many and that I didn't need them enough to be taking them. Just so you know - this is complete bullshit. Since I got diagnosed with Rheumatoid Arthritis two months ago, he's been giving me 5mg Oxycodones, a weekly / 10 day supply, which forces me to have to find a way to get to the doctor's office every week to pick up a prescription. I've been being extremely careful with the pills. So, no more than two tablets a day of 5mg. If I were addicted, or taking too many, as he insinuated, I wouldn't be taking 10mg a day, I'd be taking like 20 of the pills a day. But I haven't been, I've been taking two, at the most THREE. So he treats me like a god damned criminal for no reason. I'm going through chemotherapy and have Rheumatoid Arthritis, and it's getting to be cold weather so I'm in a lot more pain than usual. He tells me that he's going to let me go through 'withdrawals' for the next two weeks and see if I need to I can see a pain specialist after that.

We get there today and he says, "So how are you feeling?" and I say, of course, "Awful. I can't sleep because of the Prednisone and because my joints hurt so bad." and he goes "Okay well then you passed the test." It's like he was just screwing with me and making me suffer in pain for two weeks for no reason. He hands me a prescription for 20 more oxycodones.

Thanks. It's not the first time he's done it either. I'm not a criminal, I'm sick of being treated like one because I have an illness. It's bullshit.

Anyway, new medication changes!

Instead of taking 10mg of Prednisone everyday, I'm going to do a big boost. I'm going to take 60mg for 4 days, 30mg for 4 more days, then 20 for 4 more days until I'm back at 10.

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.