Friday, October 3, 2008


This entire week has been extremely difficult to get through. I did somehow manage to make it through the Scholarship Reception on Wednesday, and I think I even managed to make a decent impression on my donor, but then I came home and absolutely crashed. And I wasn’t at all ready to deal with Thursday by the time it came around. And I still feel horrible. My rheumatologist seems like an ok guy – he’s very optimistic about my prognosis and keeps insisting that we will find something that will make me feel a lot better – but the process of finding a treatment is frustratingly slow, and there are way too many hoops I have to jump through. And feeling horrible while jumping through hoops is no fun at all.

For example, two weeks ago today I went to the rheumatologist to tell him that the treatment we are trying right now clearly isn’t making me feel any better. He decided, two weeks ago, that I should start a treatment called Remicade. Remicade is a newer treatment that is supposed to be more aggressive. It is administered by IV, so you have to spend two or three hours sitting in your doctor’s office to get each infusion. Eventually you only have to get infusions every eight weeks, but during the first eight weeks you have to get three infusions. But the good news is that Remicade can supposedly have you feeling better in as little as two weeks. Two weeks have passed since we decided to start the Remicade, so why am I not feeling better? Because I still haven’t even had the first infusion.

First, I had to get a PPT test – which is a test to make sure you don’t have TB. It’s the one where they prick your forearm and then two days later you have to go back to the doctor’s office and they make sure no little bumps have formed on your arm. Even though they could have done the test at the rheumatologist’s office, my labs are only covered by my insurance if I get them done at the student health center. So the rheumatologist wrote me a script to have the test done and two Mondays ago I went to the student health center to get the test.

They wouldn’t do it that Monday. Why not? I needed to have an appointment. Are you serious? I need an appointment for someone to take 30 seconds to stick a needle in my forearm? Apparently I do. Are there any appointments available today? No, there aren’t. Are you sure there isn’t a nurse who could just place it quickly right now? No, apparently there wasn’t. Fine. Give me an appointment.

Last Tuesday I went back to the student health center for my appointment. I checked in, they called my name, we walked back to the nurse’s center, the nurse filled out some paperwork on the computer, she poked my forearm with a needle, she told me when to come back to have it checked, and she sent me on my way. The whole process took literally less than three minutes. Last Thursday I had to go back to the student health again so that they could check my arm. They checked it and decided I didn’t have TB. They faxed the results to my rheumatologist. Great, I thought, now I can start the Remicade right away.

Wrong. I have to get the rest of the paperwork in order. Because Remicade is really expensive: as in my 20% co-insurance is going to be about $600 per infusion. And I have to get three infusions in the first eight weeks. Luckily, there’s this program called RemiSTART that can help refund up to $400 of my out-of-pocket expenses for each infusion. So I have to fill out the paperwork for RemiSTART to help get through the payments. But then I have to ask the nurse at the rheumatologist’s office a question about the paperwork and she doesn’t work on Fridays. So I have to wait until Monday.

This past Monday I got the paperwork in order and finally called to schedule my first infusion. They tell me you can get your infusions on Monday afternoon, Wednesday afternoon, or Thursday morning. Apparently it is completely impossible to get this treatment if you have anything remotely resembling a real 9-5 job. So I ask, how about this afternoon? No, there aren’t any openings today. In fact, there aren’t any openings for the rest of this week. So I have to wait until next week. What about Monday afternoon? I have class until 2:15pm and I can be there at 2:30pm. No, that’s too late. The infusions take 2-3 hours and so they won’t let you start any later than 1:00pm. So that makes Wednesday afternoon out of the question too. So next Thursday morning at 9:00am it is, even though I’m not so good at mornings these days.

So now I have to wait another whole week before I even get my first infusion. And it will be another two weeks after that before I “may” start feeling better, assuming the Remicade works for me at all. So what I want to know is this: how on earth am I supposed to get through all of that? One day at a time, I guess. But with how horrible I have been feeling these days, each day has become more of a struggle.


~kelly marie~ said...

The fact that you made it through that day is such a testament to who you are. Both of our views of accomplishments have had to change but making it through that day was your 100%. :).

You know how much I hate insurance companies and their evilness. Just know, that you will get a chance to try that drug. I know you won't take no for an answer :). I really hope Remicade is going to be a help for you. I am going to start sending it out there. I too have turned to hippy-woo woo stuff. It's amazing what a difference it makes. Someone within the group of people I've been seeing said to see my medicine not as cursed, but as blessed. To view the medicine as candy. It may sound totally silly, but it kind of works. So, I look forward to the day you can get your blessed IV candy. I just know it will help you.

A said...

Um, three cheers for you AND Kelly Marie. Viewing meds as candy=fabulous in my book. Think of it as a blending of East and West, a meeting of modern medicine and ancient treatment. With a crispy chocolate coating. And while you're at it, bring some real candy to indulge in during your wait...

~Mariah~ said...

I have just dedicated an entire post to this medicine as candy idea, so thank you both for your advice/thoughts/ideas. I really appreciate it. A lot of dealing with this is just trying to figure out how to wrap my head around my new situation, so I completely welcome any and all ideas for how to do so. No matter how hippy-woo-woo they may sound. ~;o)

Skye said...

God this is exactly the crap i'm going through it sucks! soooo much :( I just want to start Enbrel already!!! Ugh

~Mariah~ said...

SKYE: It DOES suck! A lot! Hang in there. Hopefully it will be over soon.