Friday, December 10, 2010


I don't have too many grudges, not being a person who can hang onto anger for very long. That and I have a thing about excess baggage. Carrying a grudge can get heavy, and I'm too lazy to want to carry anything heavy for very long. But for all my high minded words, I have 2 grudges that I am not quite ready to let go of.


That's right, I have a grudge against Rebif because it happened to be in the wrong place at the wrong time. Or was it diabolical enough to put itself there? I'll let you be the judge. Right after I was diagnosed, I didn't want to read anything more about MS because everything I had read about it up to that point was not anything I wanted to hear. I wasn't ready to research any deeper than the most basic information, and even that was too much. After a period of avoidance, I decided to try reading a magazine I had gotten in the mail, figuring it wouldn't be too overwhelming. I took the magazine into the bathtub with me and got trapped in the tub with a magazine that turned out to be one long advertisement for Rebif. I wanted to read about MS and the different treatment options out there for me as I was still trying to decide which medicine to go with, but I obviously got a magazine that was funded exclusively by Rebif. I stalked out of the bathroom, and as soon as my foster daughter and husband saw the look on my face, they grabbed some popcorn, propped their feet up, and sat back to watch the show. I threw the magazine against the wall, was unsatisfied with that so I threw it into the fireplace, and ranted and raved and frothed at the mouth about how it told me nothing about MS, only propaganda about Rebif. That started my deep antipathy for Rebif, and I swore then and there that nothing would ever induce me to take it. And I still hold with that position. I don't care if God Himself comes down and tells me to use it, I will have to decline as politely as possible and pack my bags for hell.

The icing on the cake came in the form of a representative for Rebif. I liked her personally, I just hated what she was representing, and representing she did with gusto. One day, at a MS walk, I was talking to someone who was hoping to go on Rebif. I said how much I hated the interferons -- I had been on Avonex and didn't enjoy the experience -- and wasn't hip on doing them again (I didn't tell him about my grudge against Rebif). We were talking about the side effects, and I said how higher doses of interferons means a higher risk of neutralizing antibodies. He, all pompous and holier-that-thou, pooh poohed my statement with a, "Oh, I don't know about that." The rep came over and we asked her, she admitted that it was true, and I was big enough to not yell, "CHECK and MATE!" in his face. He lost all interest in continuing the conversation, and I lost all interest in having any more conversation with his pompous self.

The only Rebif I will touch is my Rebif pen, because I like the way it writes and the general public doesn't know what it is. They would probably think it was some medicine that stops bladder leakage at the cost of the rest of your organs. The day someone knows what it is and comments on it, is the day I throw it away and use a pen that doesn't write as well, but that is a sacrifice I am willing to make.

That "Brave" Woman

I had met this woman when I first started Tysabri, and she had just started too. I saw her years later, after I had gone off of Tysabri due to the higher risk of getting PML the longer you are on it. She asked me if I was still doing Tysabri, and I told her what I just wrote. She, still doing Tysabri, said, in a voice one would use to talk to a slow child, "I'm not scared of dying," like I was one of the cowering masses who live in fear of death, which I am not, death seems like blessed release to me. She was walking away, head held high like the superior person she is could not possibly be seen talking to a coward like me, when I told her that I am not afraid of dying, I'm afraid of living through PML and what it could do to me. She actually slowed her walking away, and got a frown on her face as she processed that answer. She lost all interest in ever talking to me again and still doesn't have too much to say to me whenever I see her. Maybe because I didn't have the proper awe for her and her blithe disregard for death? Maybe because I had a point and have blithe disregard for death, too? Who knows? And I have no intentions of having further conversations with her, not enjoying being talked down to. It actually gets my hackles up and doesn't cow me the way I feel like they are intending it to.

Even though I don't like holding grudges, these are 2 that I have no intentions of letting go, they having offended me to the marrow of my bones. It is rare for me to be that deeply offended, so I'm going to enjoy these grudges to the end of my days. Some baggage is worth carting around.

1 comment:

Times Three said...

Thank you for writing this. My best friend was recently diagnosed with MS, and I came upon your blog while I was reading about it. Enjoyed reading your blog!