I realize I haven’t gotten to the Part Three of The Incident yet, and for that I apologize. I’ve been obsessing over this for weeks now, and frankly, I’m exhausting from the re-tellings. Can you imagine? ME? Tired of telling an exciting story?
Well, believe it or not, it happens. Part 3 will have to wait just a little longer.
Right now, my life is completely wrapped around the notion of trying to get better and survive. My new obsession is understanding the drug I was taking, why its withdrawal is so drawn out, and why it did what it did. If I can understand it, maybe I can treat it — and when (and if) I ever get proper MEDICAL treatment, I can point my doctor(s) in the right direction. The problem is, my case is so rare, so challenging, and so complex, there aren’t a lot of people remotely QUALIFIED to help me. And those people most likely do NOT live in this stinkin’ small town.
So, seeking answers to my questions and desiring to clarify some of the misconceptions and outright mistakes on my records from the hospital, I emailed their chief toxicologist. Of all the doctors’ notes in my two-inch file, this guy’s were the best. Clear, concise, working off facts and calling presumptions out with question marks (when other docs wrote them as facts). He also indicated in his notes that he was actually thinking THROUGH the problem not reaching for the closest protocol for ‘standard’ cases.
My point being, I liked this guy, just based on his notes. I found his email through the hospital website, and decided to send him a letter asking if he might have time to chat with me, either by email or phone. Hell, if I had a car, I’d DRIVE out there to talk to him, but… at any rate, I figured I’d hear back from him only to have him say NO or to pawn me off on one of his interns. After all, he has thousands of cases each year, and it has been two months since I was a patient. In fact, I really wouldn’t have been shocked if he didn’t reply at all.
Imagine my surprise when I heard back from him! He was really (really!) nice, and would love to talk to me! He said, “Yes, I remember you well; in fact, I will never forget you,” then went on to say, “Your case was so unusual and so life threatening that we all will never forget it.” He added that he’s using my case study — already — with his students to teach them about the types of arrhythmias I suffered from. THAT is how rare it was — I’m a teaching tool! (Okay, probably just a tool, but whatever, haha.) Strange as it might seem, I was thrilled by this news — that The Incident might help teach other students how to not kill a patient strengthened me with a sense of purpose.
And, strangely, I could even imagine myself going after my medical degree and, years from now, ending up in this doctor’s Emergency Medicine class watching a presentation on my own case. Now come on, how WEIRD would that be? Watching a slide show and thinking, “Gee, this sounds familiar….”
In fact, the doctor DOES want to speak with me and invited another one of the Emergency Tox Docs to join the conversation — I told him, of course, whoever wants to chat, I’m open to it. My main interest is understanding the situation, and making sure THEY have all their facts straight too. If all these docs plan to publish about my case, I will not have my story appear in the New England Journal of Medicine while riddled with factual errors! I do have SOME pride.
So now I’m trying to prepare for our chat next week. I want to have my questions and theories clearly outlined so I don’t start telling stories off on a tangent and waste this guy’s time. But I also worry about what to say if this Doc asks me what I’m doing to manage my withdrawal symptoms. I don’t want to tell him I’m back on the OTCATO (even though it’s in smaller doses, noted on a chart, and reducing the dose every other day or so). But at the same time, I don’t want to lie to him either. If he becomes involved in my case, he WILL eventually find out. I also wonder if it’s ethically FAIR to lie to him since that could inadvertently color the outcome of the case. But I also don’t want to put him in the position of “blame” either — it’s not HIS fault that I’ve had zero aftercare, you know? My plan, right now, is, I will evade the question if asked directly, but will otherwise avoid discussion of aftercare management at all costs and direct all conversation (beyond initial pleasantries) to The Event itself.
Beyond that, it’s been an up-and-down week. Earlier this week, I found out I was approved for food stamps. YAY!! I ran down to the Social Services office to pick up my card, then went directly to the grocery store to stock up on actual healthy food. Meat. Veggies. Fruit. And yes, even a few “luxury” items like spices and a couple of prepared goodies. I got home and gorged myself on self-purchased nutrition for the first time in, oh, I’d say probably a year. I’m sure my body has NO idea what to do with raw veggies and protein, but it’s doing its best. I’m working on a transition over to the Atkins low-carb lifestyle again, now that I can afford it. I’m desperately hoping that will help with these withdrawal symptoms I’m experiencing.
Among the worst symptoms has been the Restless Leg Syndrome. Though I’m not entirely sure I have that by definition, I’m 100% sure that it feels just horrible, painful, and would drive me to a mental ward (literally) had I not started the OTCATO again. I’m hoping that a change in biochemistry to lipolysis, with all the accompanying hormonal shifts, might aid me in reducing the dose of OTCATO more quickly while eliminating the insane electric poking, stabbing, slicing feeling that never ceases.
Then there’s the deepening depression that also never seems to abate. The OTCATO doesn’t do jack for that, but it DOES allow me to stand up and move around without pain and the accompanying anxiety. However, on days like this when the depression just throbs like a toothache in my soul, nothing makes it ease. Even having money to buy nutrition doesn’t seem to take the edge off. I got off my duff this morning to walk to the grocery store with the intent of buying more good foods, but arrived there only to find I didn’t really care, nor get any joy or satisfaction from the experience. At least getting out of the house for a little while kept me from deepening inside the blues.
All day, I’ve felt NO hope, like I should just give up. No doctor is gonna want to touch my case (that hasn’t touched it already) — and the docs who have are an hour away in another city (and without a car, how am I going to get there without ‘outing’ myself to someone?).
The depression just really gets to me — and with nothing to take for it, how do you resolve that?
UPDATE: A few minutes ago, I found out I was approved for medicaid/health insurance! And, just moments later, I got UNBELIEVABLY lucky and scored an appointment with my ‘new’ physician on Monday at 8:45. I can’t believe it. I’m not promising that anything will pan out based on this. The doc could be a complete jerk and unreasonable as hell, but at least it’s a start (and a quick one at that!).