|Just me and my iiiiiiiiiiiiiiiiiiiiiiiiii – v!||Jan 11, ’06 9:52 AM
Here is a picture of me and my IV from today!
The infusion went okay. They stuck me first in my left arm near my hand and they hit a nerve! Has anyone ever felt that? It is HORRIBLE! It was like piercing electric shocks that made my pointy finger bolt out straight! AUGH! So, she took it out and went for the bend in the arm, which totally sucks because you are a one-armed Sally the rest of the day. Because you cannot bend that arm at all or it messes up the IV, and it also hurts like hell.
I think all the goofy feelings from the past week are stemming from the huge amounts of Prednisone. Today was my last day of 30mg, but the same kind of steroids are given to me in an IV as a pre-med, before the Rituximab. I started feeling shaky inside, hot inside, and having muscle cramps everywhere about a half hour into the pre-meds. My heart would race like it does when you get really scared, it felt like it was beating out of my chest. The hooked a blood pressure cuff on my arm and it squeezed me every fifteen minutes. They took my termperature every half hour. Excpet for the occasion racing of my pulse, everything was normal. The old men were all watching Westerns again, today’s feature was McClinock, with John Wayne. Not my cup of tea. I begged to watch Montel, but no one was on my side. So, I dozed off again and woke up with metal mouth. Yum. It isn’t as bad this time as it was last time, or maybe that is just because I was expecting it and not taken by surprise? It also could have been because I ate a whole bag of gummy worms and a whole bag of Werther’s Originals in those five hours.
The headache/neck ache has come back with a vengance, so loud noise is really hard to take. I feel hot and sweating one minute and then cold and shivering the next. Even my jaw is starting to ache, and it hurts between and behind my eyes. The muscle aches are having a good old time traveling around my body, and I am just plain exhausted.
I did this in the wrong order and forgot to say that Kasee drove me all the way to Wichita this morning and dropped me off. (Which was very kind of her, thank-you Kasee and Kalee) I had a quick half hour appointment with my psychiatrist, and then walked over to the hospital for the infusion.
My pyschiatrist’s name is Dr. Fast, and he is a really nice man. I started seeing him last Fall when my RA doctor wasn’t sure if I would get approval to try Rituximab. At that point if I was denied the Rituximab we had two options; Gold Shots (which had little to no chance of working and they are also painful injections given weekly into your muscle) or pain pills/chronic pain counseling. Since anger and crying haven’t really gotten me that far, I figured it wouldn’t hurt to talk to someone about it all. Turns out he is a great listener, which I suppose is his job, but he REALLY is an exceptional listener. I feel like he really “gets” me and he gives me better ways to communicate my feelings. He also seems to really empathize with my frustations and aggravation, and he works hard to find solutions for me.
At one session we discussed the troubles I have with people judging how sick I am by my appearance. I feel like this is one of the biggest thing that frustrates me. Probably bugs me the most when it comes from people I have just met or people that don’t know me. Like people that make comments when I use my handicap sticker or when I am at the VA. I work really hard to not look sick, because who wants to look sick? But it seem to be just shooting myself in the foot. I can explain things to people and it seems like they are understanding, but then they will disregard everything I said and made comments based on how I look. (like the chronic pain social worker lady that said, “you are pretty and everything is going to be just fine”. So, Dr. Fast uses analogies a lot. Once he used the analogy that I was a zebra, but everyone treats me like I am a horse. Which is so very true! I don’t want to meet someone and in the first five minutes tell them that I have RA and that is why I don’t work, go to school, can’t run, can’t carry that, etc…. So, I work hard to maintain a normal person’s appearance and avoid circuimstance where I will have to be forthcoming with that information up front. But as time goes by and I can start to trust people, and then I want to let them into that part of my life. So, I wait awhile before I drop the bomb. In the volunteering I do at some point it becomes a neccessity that the organizations know my limitations and restrictions. So then I have to say, look I know I look like a horse, act like a horse, etc…but I am really a zebra. A lot of people I encounter, (doctors, nurses, the pharmacy), are taught to group people into categories and base their diagnosis/treatment on what category you you fit into. So, they are used to treating horses, and I am a zebra. You have to think outside of the box when dealing with a zebra, and not very many people can do that. Maybe sounds crazy, but it makes perfect sense to me. When he said all of that, it was like it was the first time somebody really heard what I was saying and totally understood me from the moment I met them. But, then what do you do with that information? I have to either learn how to tell everyone off of the bat that I am a zebra, (which is not my personality) or I have to find better ways to deal with people when they treat me like I am a horse.
Anyway. Back to Dr. Fast and today, the whole doctor fiasco from Monday had him all amped up. I told Kasee this morning that I feel great relief when I unload all the crap onto him, but, I also feel guilty that I leave him there to deal with the aggravation and frustration. I look relieved, and he looks, well…… like I did before I talked to him. But, again, I suppose that is his job. He was just plain pissed that the VA did that to my Dr. and to all of her patients. So, I left him stewing in it. The last time I left him stewing was after all the trouble I had the VA pharmacy, which he sorted all out, he pretty much had the pharmacist begging for forgiveness.
Then it was on to the infusion. It ran faster this time. We didn’t get started until about a quarter to eleven and we were done at about ten minutes to four. BB got there at three thirty and sat with me until I was done.
I have taken some pain pills/muscle relaxant and I am starting to get really sleepy. I am going to head to bed early. I hope someone is reading this, haven’t had much feedback lately. So, just hope I am not just sitting here typing to myself. Anyone out there?