Making Pacts with the Devil- an update on me

When people ask me what it’s like living with a chronic disease, I sometimes say that it’s like making a pact with the devil.

Let me elaborate: The best known pact with the devil in literature is probably Goethe’s Faust (ok, maybe Christopher Marlowe too!). Faust, the protagonist, has a terrible problem: He’s educated, good looking, no shortage of money, generally in a good place, but no, Faust is super unhappy. He wants to know more! He wants to do it all, live large! One fine day, after Easter, the devil visits him, first in form of a poodle (sorry poodle owners) and then he reveals himself. The deal is pretty simple: Mephistopheles will lead him through life and Faust will give him his soul in exchange. Obviously, Faust was not raised catholic, or is all that smart after all, because I could have told him that no, this isn’t the greatest of your ideas, man. How could this end well?

In the course of the drama (Part One and Two), Faust is livin’ it up: He attends a witches’ sabbath, has an affair with 12-15 year old Gretchen  (who then has a baby, kills the baby in her desperation and goes crazy over it), parties with the emperor, has another kid (with Helen of Troy, yes, you read that right) and towards the end of his life screws over an old couple, because he wants to live on their land to oversee his works. At the end of Mr. “But I really meant well, peeps” Faust’s life, Mephistopheles is getting ready to take him, but of course, the Lord has other plans- his sexy angels distract depraved and horny Mephistopheles, and Faust’s soul is being saved (and yes, this really is one of the most common scholarly interpretations of the scene, in slightly different wording).

I currently feel like I am making a pact with the devil, just way less glamorous than Fausty. After my surgery wound healed, I finally re-started the Remicade (infliximab) that I had started before the stomach perforation. It’s working fairly well, I think, my blood work looks fine, I am in less pain, I keep gaining weight, and lo and behold, I even have formed stools on occasion. Here comes the price: It’s a two and a half hour infusion every six weeks (and here I am better off than most patients, a lot of people sit there for a good four to five hours). Do I need to schedule vacations, my work and everything else around? You bet. To me, this loss of independence is already big, but hey, it’s once a month and if I feel well enough to enjoy the rest of my month in exchange? Sure. After the infusion, I feel like hit by a truck for two days. I don’t exaggerate- in German there is an expression “aus der Haut fahren”- when you want to get out of your skin. That’s me. Every effing muscle is aching and it can be hard to type because my skin is so sensitive. Oh, and the fatigue I won’t even mention (except that I just did). I also bruise really easily these days, not too great when you have a rambunctious boxer pup at home. Whatevs though, I’ll just wear long pants and sleeves. The latest though, is hair loss. It’s falling out in the bushels. Now anybody who knows me in real life, knows that I have always expressed myself through my hairstyles. This is where I am fed up.I am joking “oh, I guess it’s pixie time again,” but I dread every time I wash my hair.

actor who played Mephisto a little too well: Gustaf Gruendgens
actor who played Mephisto a little too well: Gustaf Gruendgens

I have never thought much of the side effects of the meds I have taken over the years: Prednisone, Azathioprine, Mercatopurine, Methothextrate, Humira, Cimzia, 5-Asa, budesonide. You take the stuff, because if you have the choice between active Crohn’s and nasty side effects (and/or cancer in 30 years), you choose the latter. Except for that it isn’t really a choice. Faust could have said no (and saved a lot of scholars of German the pain to read through the work), but really, what am I to do?

In Faust’s universe, this all would make sense and have some deep meaning and was part of a cosmic plan- “alas, I am lacking the faith” (allein mir fehlt der Glaube).

And yet, I wonder, maybe I am like jackass Faust- because overall, I can’t complain. I went camping two weeks ago, for crying out loud! I have insurance that pays for all of this! What are two days out the month?! Who cares about hair when really I recovered so fast? And why is it now, after all of these years of meds and side effects that I am complaining?

Yours-

ungrateful .

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6 responses to Making Pacts with the Devil- an update on me

  1. Even when there are plenty of things to be grateful for, I believe you’re still allowed all of your feelings, including frustration and being fed up. Those are a part of being a normal human being and don’t make you ungrateful. Just my two cents!

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    • vjhutter says:

      Thanks- it can be hard- the last thing I want to do here is to be whiny and potentially scare other newly diagnoseds. At the same time, I want people to know what’s going on, IBDers or not. Thanks for the encouragement.

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  2. Susannah says:

    Oh, dear girl! You definitely have reasons to be frustrated and upset. Even in the midst of your gratefulness there’s definitely room to be honest about frustration! I’m so sorry you’re going through that!

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    • vjhutter says:

      Thanks Susannah! I think I need to find ways to channel the frustration into something productive though. A little rant on occasion helps still. It’ll get better, I know it.

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  3. carrotbowl says:

    I agree with Catherine. You have to sit with the pain, the hard stuff, the disappointment, the time and figure out how to move forward. It sounds like you are moving forward, finding the places where love and acceptance and kindness towards yourself are filling you. This is not fun stuff. You are stronger than you think you are.

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    • vjhutter says:

      Thank you for your kind words. I think the moving forwards is rarely ever as linear as we’d like it to be. There are good days and bad days, and really dark ones (that I haven’t figured out how to write about yet). I’ll get there, though.

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