Darker Side of the Moon

For a recap - the day I went in to do the Cytoxan (chemo) a nurse told me I didn't have an appointment for that day and that Dr Reynolds wasn't even sure he wanted to go ahead with the Chemo. I cut my hair, I mentally prepared myself for over a month and that's what happens. We have a meeting with him, I freak out because I'm incredibly angry and he's acting like it's MY fault. He even said to Sean and my mom 'This must be difficult to deal with all the time.' I'm not fucking like that all the time, I am pissed because YOU fucked me over, and are blaming it on me!

So I get referred to Dr. K. We called ahead and asked if he accepted my medical - DSHS, which most people don't. The receptionist said they did, we sent me paperwork and tried to make an appointment today, but the lady said they don't accept my medical. Just wonderful. Even if they did I wouldn't be able to get in until November. Lovely. I need to see someone ASAP. My lupus and ra are currently untreated except steroids, which I'd like to get off of EVENTUALLY. I've been on em for a good two years now.

Not only that but the last time I got pain meds from Dr. R., he prescribed me Hydrocodone instead of my usual Oxycodone. The difference is Hydros have a bunch of tylenol in them, Oxy's don't. The tylenol makes me nauseas, headachey and hurt my body really bad. We have been trying to get ahold of him since Thursday of last week. We've been calling every day and the nurser promises he'll call us tomorrow. but he's NEVER there when we call and he hasn't returned the call yet. He's calling tomorrow and I'm LEAVING tomorrow at like 6pm! This is SUCH bullshit. I'm SO SICK OF EVERYBODY IN THE MEDICAL / GOVERNMENT SUCKING FOR A LIVING.

on a lighter note -

bumbershoot is so close, and doug benson is probably going to help us get into some good shows. i'm terrified i won't get into some of them. i'm not going for music and the comedy tents are usually sold out.


Monday I'm going in to Dr. R.'s office and signing a medical release form for Dr. K. Then I'm calling and making an appointment with him. Hurray.

I'm a little worried about my pain medication. I only got 20 the last time I filled them so they'll be gone soon. :(

Five Days Until It Begins.

Only 5 more days until the chemo starts. I don't even know if we can go to Bumbershoot. We don't have a ride.

Scared. Nausea. Lack of energy. Lack of hair or skin pigmentation. Lack of usefulness.

I made a pretty necklace today. I am proud.

My Doctor is a Nutcase.

That is about as nicely as I can put it.

We went in, already angry. We came out infuriated.

He sensed I was pissed. Basically, he said it was his nurses fault and tried to blow off the fact that HE TOLD ME we were doing Cytoxan for SURE. To cancel my upcoming Bumbershoot trip because I was going to start Cytoxan.

It was scheduled to be the Friday after I got back from Seattle. But while in Seattle, I got an outrageous tooth infection and I had to get it pulled immediatley upon coming back to Spokane. Obviously you can't begin chemotherapy with a big hole in your mouth that hasn't healed at all yet, so my mom called and postponed the chemotherapy for two weeks (August 4). We called a couple weeks ago and asked if we could do it sooner (last Friday, July 28th) because my tooth (or hole where a tooth used to be) healed really fast. The nurse said no, we're doing it for sure on August 4th. My mom says ok, assumes the appointment has been made [even though she never talked to the scheduler], and I prepare myself mentally for a month for this six month intensive chemotherapy treatment where I'm going to lose all my hair and be a hermit during. (Which I cut all of my pretty red hair off - FOR NO FUCKING REASON.)

Sean, Chad and I show up on Friday, bags in hand, in my pajamas, ready to get my chemo. I'm psyched. Let's do it. The head nurse comes out and says she doesn't think my appointment was set for today and she needs to go talk to the doctor and figure out what is going on. After waiting for an hour or more, she comes back and schedules me an appointment for Monday (today.) and that he's not even sure he wants to do the Cytoxan. This is the first I've heard.

Today we went in and had a big blow out. I was so mad, I stormed out and said flat out "I'm leaving right now because i'm really pissed." My mom and Sean were pissed as well. My mom basically told him we were sick of his bs and we're finding a new doctor. Basically, what went down is he didn't take ANY kind of responsibility for HIS screw up, blamed us and his nurses for everything. At one point during the meeting he said to Sean and my mom, "It must be really hard dealing with this." How the FUCK is that supposed to make me feel? I just got done telling him I had extreme anxiety because I have to depend on people so much. Then, right before i left the room - this is was really pissed me off.

He said "Y'know, this has been hard for us. And you have been difficult." I don't remember specifics.. But basically it's been hard for them to help me. I was like "Isn't that what you are supposed to do when someone is sick?" and that was when I broke down and said, "I'm just leaving right now because I'm really pissed off." Sean chased after me, my mom stayed back and kinda yelled at him. She came back out.

He put me back on Methotrexate, a higher dose. six 2.5mg pills a week. i just took them. Wooh can't wait to feel even shittier than I do now. I'm supposed to call on Thursday and figure out what's going on.. But I think I'm just going to call a rheumatologist, Dr. K.

I'm so fucking angry.

I Wish People Would Quit Jerking Me Around

I'm so fucking angry.. I've been so angry since we left the hospital. I'm infuriated. I've managed to have a good time today and laugh through stuff, but my mind always goes back to the fact that every day I get screwed over more and more by the people who are supposed to be HELPING me.

I just want to hit and throw and kick and scream and cry.

I just want to fucking rip somebody's eyeballs out.

I'm so tired of all this shit.

No Chemo All of the Sudden

I walked into the appointment, ready for my first cytoxan treatment. I had a pillow, Sean and Chad were carrying my backpack / cooler.

The nurse walks out and tells me I don't have an appointment that day, and then says that the Dr. "wasn't sure about the Cytoxan."

But he didn't bother to tell me he changed his mind, he just changed it, then made me look and feel like a fool.

When my tooth was pulled [after the Cage concert in July], I asked my mom to reschedule me for last Friday, but when she talked to the nurse (not the scheduler) they said they wanted to wait until after this Friday.

So, today [Friday], Chad, Sean and I get all ready and go to the hospital. We show up and Nurse V. comes out and says, "We're not sure you have your appointment for today. We're trying to figure it out." An hour later I am told that Dr. R. doesn't want to do Cytoxan anymore, he wants to put me back on Methotrexate [which didn't do anything for me last time.]

So I worried, I cut off my long hair for this? What kind of Doctor doesn't even talk to me about the decisions he makes? I am so furious!

Disability Determination Response

So I got a letter today from DSHS. I got excited thinking it was a denial or approval of cash benefits.. But I open it and for the first time, they're actually making me go to a doctor to get looked at about my condition.

"It was determined that we didn't know enough about your condition so we're sending you to this doctor to get a physical exam." The thing is? They're sending me to a chiropractor. If anybody knows what autoimmune diseases have to do with chiropractors, please let me know. If anything, she [the social worker] should be sending me to arheumatologist for a full exam. I'm thinking, since she's made silly mistakes before, that she saw 'arthritis' and automatically thought 'bones', therefore thinking 'chiropractor'. Why does the government hire people who know nothing about their jobs?

I'm beyond tired of getting fucked over by the government.