A Sick Foreseeable Future

daily pillsI’ve mentioned recently (and elsewhere) that I’ve been dealing with a lot of chronic health issues. They are pretty much a void in which all of my time and energy have been getting slowly sucked away. My health has caused me to miss more work than I have in the last six months than the past six years combined. They’ve caused near paralysis with my writing and have prevented me from even leaving the house much. It feels like there is not a lot I can do but write about them as I make my stand.

I’m 32-years-old, but you’d never guess if you saw my medical chart. I’ve got an arthritic back, severe ulcerative colitis (UC), IBS, acid reflux, lactose intolerance, Celiac Disease, a tree nut allergy, allergies to most things that grow on trees (including most trees, themselves), generalized anxiety disorder, clinical depression, extreme ADD, and insomnia. The picture above is the minimum number of pills I have to take on any given day. The problem(s) lie in that the treatment of some of these issues results in complications with others.

Around the end of September of 2013, my UC began to flare up again. It progressively got worse despite the treatment I’d undergone since my diagnosis. My gastroenterologist prescribed more powerful mesalamine drugs (Lialda, Asacol, and Apriso), but each of them failed to work to expectations and came with an alarming side effect of their own: severe chest pains. The doctors had me stop taking the mesalamine because in some cases, it can cause pericarditis, a condition in which the sac-like covering around the heart (pericardium) becomes inflamed.

I’m still having some residual chest pains from the mesalamine; I need to schedule an appointment to have an EKG done to see if my heart got fucked up or not. So that’s something fun to look forward to.…

The next step up in the chain of drugs used to treat UC is an immunosuppressant called mercaptopurine (Purinethol), which is usually used to treat lymphoma. (Fun fact: in rare cases it can also actually cause lymphoma.) This drug wrecked me from the beginning. I have been experiencing truly unbelievable nausea since the third day and have developed a laundry list of taste aversions (something that’s really inconvenient when you are allergic to more foods than you can actually eat…).

To (at least try to) control the nausea, I’ve been taking ondansetron (Zofran). It kind of works. Mostly it takes just the most extreme edge off wanting to vomit so that I can amble around the house. It does nothing for my complete loss of appetite. Simply eating the most basic foods has become a truly Herculean task.

Part of the nausea is attributable to the effect mercaptopurine seems to have on my pancreas. In 2008, I had a really severe case of pancreatitis which is the worst thing I’ve ever suffered through. It’s basically where you pancreas decides to take a vacation and your body can’t make enough/any digestive enzymes. This results in extreme malnutrition and severe nausea. I’ve been having many symptoms of pancreatitis again and it’s just as horrible the second time.

I’m only writing this blog post right now because I went rogue this past weekend. I stopped taking the mercaptopurine. Just temporarily. I needed a break. I’m not nearly as strong as I’d like to be. Forcing myself to take 125mg of the drug each day is how I imagine it would be for a person to force themselves to drink syrup of ipecac each day. You know it’s going to make you sick. You know exactly how horrible it’s going to make you feel. But you also know that really bad things can result if you don’t take it.

One of the biggest complications my doctor told me he worries about is when a patient’s UC gets so bad that it perforates their bowel. I didn’t need him to elaborate much to know that it sounds really horrible. This is a real Scylla and Charybdis situation here, the ultimate “stuck between a rock and a hard place” scenario.

My doctor is going to call me today to talk about the blood I had drawn Friday as well as adjusting my dose of mercaptopurine. I’m both looking forward to- and dreading his call. The worst part of mercaptopurine is that it isn’t something you take until you feel better or until the UC flare is under control – you take it for life. I’ll be frank: that notion fucking terrifies me. Right now, reading is almost impossible; it’s like having motion sickness sitting still. Writing is even harder. Those are two activities that have come to define me.

Who will I be if I can’t do either?

In any case, this issue will probably take up a lot of the focus on my blog. It’s what dominates each of my days right now. I have a small hope that maybe writing about it will be a kind of therapy that helps, even if it’s just in the smallest of possible ways. The hope is faint. Most days I feel defeated. I feel like hopelessness is a tiny misstep away. It’s hard to be so sick and know there’s no such thing as a full recovery. It’s hard when your life becomes an ever-growing list of things you can’t do. The bottom line is: It’s hard.

I should mention the light spots in my life and they’re very bright: my wife, Jenni, and my son, Joseph Paul. Without them, it’d be impossible to tackle this; it’d be too easy to give up. But I don’t need any more motivation than those two. I can’t really put into words how much they mean, but I think they know.

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7 thoughts on “A Sick Foreseeable Future

  1. That sounds very very challenging!

    Thinking of you and wishing you a good recovery/improvement even if it takes time.

    Let me know if I can help from the distance I’m at, even if it’s just to send a few @ tweets per day.

    Big hugs!

    • Thanks so much Berit! It means a lot! My most realistic hope is fairly simple: I’d just really like to get to a point of some kind of equilibrium. I don’t have to feel perfect (that’d be nice), but being basically incapacitated isn’t really living. It’s surviving, getting by. I’m just hoping for something to get better soon!

  2. John Domini says:

    Joseph, thinking of you, & I send healing. You take your time — I’m living proof, myself, that a season or two (or three) lying fallow will result in greater fertility another time.

    • Thanks so much for the words, sir! It’s interesting how time always seems to fly…except for when you’re sick or experiencing something unpleasant. Then it almost grinds to a stop. I wish that was more metaphorical, but the perception of it feels all too real.

  3. Lx says:

    goddamit,man….goddamit

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