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.

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?