Sliding toward oblivion / Nurses know best / Drugs, drugs, more drugs

Things continue to go as they have been the last couple of days, I’ll be anemic soon, electrolytes will be all fucked up, and I’ll be very weak—weaker than I am currently. Last time I felt myself getting this bad was during Flare #2, and I’d reached the point where the thought of walking to the kitchen for breakfast was too much, too intimidating, like that would have been such a journey, equivalent to climbing Everest. Nearly fainting in the shower is when I knew I couldn’t do this alone anymore and decided to go live with CF⁽¹⁾ for a period of 2-3 weeks.

I’m losing weight, I can tell. I just don’t look or feel good. And mentally I’m not straight at all. This morning I called CF again to let her know what was up and we had a good cry and talked for almost a half-hour about everything. I was angry, didn’t feel well, we (or I) started talking about suicide (tends to come up often, between us), and I just told her, this is one of those days. She had made me promise to call if I ever got to that point, and I did—promise—so that’s basically what the call was this morning. She’s in another state, can’t exactly stop by and give me a hug or whatever, and there’s only so much you can do or say over the phone before all the Look-On-the-Bright-Side talk sounds trite and empty, and I guess I knew that before I called. So I think I basically called to let myself be persuaded. Because for a while there I was lying on the couch, suffering through the nausea, and could see—really see—shuffling into the kitchen, dragging the loras out of the fridge, and taking the whole bottle, like sixty-ish milligrams, at least. Then I remembered I only had two pills in the bottle, and that I needed a refill.

Divine intervention? Maybe, if only I believed there was a god.

And the thing is—and this is always how it goes—I’m sitting here typing this account, thinking back on that period of time, only a few hours ago, and because I feel better and the nausea has subsided, I have lost touch: I cannot really imagine the pain, mentally and physically. I no longer understand suicide like I did this morning. It’s distant now, a place receding—the valley in the rear-view mirror. And because I can’t remember, or re-feel what I felt then, I wonder if I was ever really there, capable of making an exit. But I know I was. I was angry and in terrible pain and alone, and that is what it takes.

The other phone call I placed this morning, after CF told me to, was to my gastroenterologist’s office. At first I talked to the secretary (mistake) and told her about my current state, asking whether they could move the date of my colonoscopy from mid-April to next week. She said no, they couldn’t. I struggled for words after that, in the back of my brain wondering if all the other patients with scope-appointments were also bleeding out of their ass and lethargic. Talking with the sec left me dispirited at best, and when she offered to transfer me to one of the nurses in the office just so I could listen to their oft-repeated Suggestions For Better Living⁽²⁾ and politely pretend like I WASN’T ALREADY DOING THOSE THINGS made me chuckle a little, bitterly I’m sure. Thanks, I told the sec, and hung up. For nothing.

CF then called the office and bypassed the sec and spoke nurse-to-nurse with another woman and helped me get things worked out. Long story short is they can’t move my appointment up, I’m stuck mid-April (unless I admit myself to the ER, which was the other option CF and I discussed and ultimately passed on, for reasons of finance and because my own self-assessments had me not quite ill or desperate enough for those bloated medical services).

The nurses there said they didn’t realize I was flaring. That’s interesting because I remember calling them toward the end of January with an ‘update’ (read: pain-induced public whining) of my condition. Doesn’t really matter now who said what or when, just as long as they know now. I told them I’d been in a mild flare since the middle of January and that I’d been mild to moderately nauseated for that intervening month and a half, all the way up to present day. Only lately, as in the last five days, my health seems to have plunged, like some sort of thrill-seeker with a hazardous love of heights, especially when it comes to jumping from them.

So they have me on Entocort now, or will in a few hours when I go to fill the script. Three milligrams three times a day, the nurses tell me. For a total of nine milligrams. Physically, this means three pills, color unknown at the moment. Wish is too strong a word, and I’m not exactly hoping either, but maybe it’d be cool if the pills were purple or cherry-red or something. Anything but white or peach. Then I could spread them out on the counter in the mornings like I do and both admire the new total—sixteen—and the new array of colors. Maybe one day I’ll be so sick they’ll let me have my own rainbow.

When you’re early thirties, sick, with a quality of life approaching zero, this is the kind of fucked up shit you wonder about and bitterly hope for and loathe the arrival of. Keeps the blood moving, I guess. And hey, at least I wrote something today.

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(1) Close Friend.

(2) An eight ounce glass of water with two scoops of Metamucil powder stirred in; a half-cup of Fiber One (“Make sure you buy the original Fiber One,” the nurses always say.  “Has to be the original.“).