Tuesday, November 29, 2011

There Must Be Some Misunderstanding. There Must Be Some Kind of Mistake.

2011 is drawing to a close, and my team of physicians still haven't figured out what the hell is wrong with my system. The team includes a gastroenterologist/internist/primary care physician (all in one little Polish man!), a cardiologist, an electrophysiologist, an endocrinologist, a psychologist, an OB/GYN and a pancreatic/liver disease specialist.

During the course of the year, I fired my old primary care physician and eliminated my psychiatrist, because the PCP was a clueless resident providing sub-par care under a HIPAA-violating, nasty proctor (the downside of Medicaid), I've been assigned a new psychologist and the cocktail of bipolar meds is sufficient such that my internist is comfortable Rx'ing them to me, which eliminates a tri-monthly, 15 minute appointment with the shrink who would do nothing but dole out the new Rx's anyway and, per former blogs, couldn't comprehend why I needed to be on anti-anxiety medications.

From a cardiac standpoint, I'm good to go. I have Postural Orthostatic Tachycardia Syndrome, characterized by a very low baseline blood pressure coupled with a ridiculously rapid heart rate, which I've had for years. It wasn't discovered until my old PCP noticed that every time I came in for a checkup, my heart rate was between 110-150 and my typical BP was 80/50-90/60. I underwent a battery of cardiac tests, the electrophysiologist diagnosing the POTS, with me following up with my cardiologist, who put me on a low dose of Propranolol, a beta blocker, that keeps my pulse down to a normal rate of 60-80. It's at the expense of a still-low BP, but that's ok. I function just fine.

It was around Fall of last year when I was at a reasonably healthy, if not a little thin weight for my height. In the mid 130's. I started having bouts of intense vomiting, which at first I chalked up to stomach flu. But they persisted to where I was throwing up nothing but a ton of bile and having intermittent but out-of-the-stratosphere upper epigastric pain, just under my breast bone. My mom was on vacation at the time, and my PCP admitted me to the hospital. I remember my cardiologist coming into my room early the first morning there, as I have to be on a cardiac telemetry floor to monitor the POTS, and me asking him what the hell was wrong with me. "Pancreatitis," he said. "Huh?" Pancreatitis is common in people who abuse alcohol, which I hadn't in 3+ years. He said there were over a dozen idiopathic causes of pancreatitis, though, and no one could figure out its origin. Unbeknownst to me, toxicology screenings were being done without my knowledge or consent, and I always came back clean and sober. (I'd sooner lie my son down on a slab of concrete and sacrifice him at the bequest of my Lord and God than take another drink.)

Had a good month or so, though my gallbladder went south and quit functioning, so I had to have it out. Soon thereafter, developed pancreatitis again, this time with even more severe epigastric pain and more bile vomiting. Anyone who's had pancreatitis will tell you (and I know of 2 people) that it's one of the most painful illnesses to endure. The pain is so severe that you break out into a sweat. You're pumped with Dilaudid or morphine every 2 hours into your IV, on complete bowel rest and nourished only with IV fluids. I started losing quite a bit of weight, into the 110-teens.

Eating caused pain and frequent vomiting, as well as diarrhea. Bile was just pouring out of me, clearly stop-gapped somewhere in my ducts. I underwent an ERCP with another gastro, who opened up the bile duct, which relieved some of the problems, until I came down with pancreatitis again in December of last year, again with no clear reason. I was referred to a pancreatic/liver specialist at a different hospital, who put a pancreatic stent in, which again helped for a while, but could only stay in for a month. I haven't had pancreatitis since, though I still vomit a lot and have diarrhea, which doesn't help me with my weight, and after a few months of no pain when I ate, which is always relieved by vomiting, the pain came back, hence the Norco I have to take as needed, which I don't like taking and by design, *should* constipate me, but doesn't at all.

Enter another diagnosis of hypoglycemia, low blood sugar. This nonsense had been going on for a couple of years, seriously, with me not knowing why I'd get so sleepy and out of it, word-slurred and needing immediate rest, at the most inopportune times. I'm not trusted behind the wheel of a car for any distances, I have attacks at work and it's a huge pain in the ass. The endocrinologist did a 5 hour glucose tolerance test, during which my sugar dropped to 35 and I passed out. A consult with the endo and his nutritionist, in order to start a low-carb, high-protein diet and a medication to block carb absorption, proved fruitless and frustrating. I have no forewarning of when a hypo attack will occur, though I watch my diet with great care. Sometimes it's just easier not to eat anything at all rather than risk a hypo attack. On the carb-blocking med, as I've said before, I lost 17 lbs in 2 months and had constant GI troubles, so my gastro told me not to take it anymore. The attacks are still sudden, getting more frequent and more severe. If I'm at home, I surrender to the sudden exhaustion and sleep for sometimes 3-4 hours in a coma-state, unable to be roused by my family. If it happens at work, I try my best to eat something small and drink copious amounts of apple juice to counteract the low blood sugar. The endo doesn't know why it's happening. Another medical mystery.

I fight the attacks at work SO hard, you can't imagine. After being randomly drug and alcohol tested, and NOT glucose tested during a severe attack on May 9th, my birthday, coming up, yet again, clean and sober, an agreement was made with the docs and my supervisor that I would clock out and take a break if I had an attack. When I feel one coming on, I start pumping apple juice to stabilize myself, but usually my supervisor happens upon me and tells me to clock out, because to the untrained ear on the phone, I sound half in the bag. Admittedly, I do. I can't write. I can't speak clearly. It's an unwelcome irritation to say the least, and costs me and my company time and money. Yet it is a legitimate, documented disability. Just like they don't know how many times I may or may not slip into the bathroom to get sick. I keep on pressing forward, maintain my composure and do my job. The office tries hard to make me feel like it's not *my* fault, but then I get snide comments from my (not their fault either) co-workers who chalk it all up to me not eating enough, when that's not simply the case. They tease me about eating mac-n-cheese, or whatever big, carb-rich meal they can think of, and debate all the drugs I'm on to try and reason why I'm a) so thin and b) can't eat and c) walk into walls.

I had my pharmacist cross-check EVERY medication I take, and I'm on plenty, to see if hypoglycemia is a side effect, and it's not. So that was ruled out. And no, it's not because I smoke. It doesn't help that my pancreas is essentially shot, the only reasonable hypothesis being that it's an after effect of the years I was drinking.

I weighed myself this morning, and I am up 2 lbs, thanks to eating generously at Thanksgiving. 115 today. By eating generously, that equals what a normal person might eat at a dinner, not gluttonous. After Thanksgiving, my cardiologist asked me how I ate at Thanksgiving, and I said I ate like a "hog." "Yes, but did you keep it all down?" he asked. Valid question. And I did keep it down.

My normal eating routine is this:

Breakfast: one whole grapefruit and an Atkins meal bar (1g of sugar, 10g of protein, 2 net carbs), or sometimes a Greek yogurt
Snack: An Atkins protein shake
Lunch: An apple
Dinner: A decent portion of whatever Ma makes, or something small if I go out, tea and a single cookie (by dinnertime, it's highly unlikely that I'll have a hypo attack. Mid-to-late morning is my worst time. Though if I want to fall asleep at night in under 10 minutes, I'll have a bowl of cereal.)

By standards, I'm still almost 1000 calories below what my frame needs to gain weight on a daily basis. I haven't felt a hunger pang in over a year. My stomach is probably really small, I don't know. When I'm stressed, I eat even less. I get a litany of well-meaning friends telling me "Try eating this or that" or "You should do this or that," none of which helps. "See a nutritionist." I did that already; that's where the low-carb, high-protein diet came in. (By the way, if you're interesting in losing weight, the Atkins diet TOTALLY works, I must say.)

Even my son says, "I'm chubby and YOU have some weird-ass disease that makes you super thin."

A well-meaning friend asked me not to get mad at her, but assumed I subconsciously enjoy being the weight I am, for it makes me more attractive, assuming to the opposite sex. I told her that truthfully, yes, I'd rather be thin than fat, but I'm not thin BECAUSE I am trying to attract men. I'm so tired of the "How do you stay so thin?" Questions from my patients when I put them on the scale at work, that I've been reduced to simply saying, "I just don't eat food" or "I am kind of sick." I know full well what it's like to be quite overweight, and no, it's not somewhere I would ever aspire to be again. Being teased for being either over or under-weight is hurtful and difficult to take. Yet somehow I think this friend thinks it's easier on me to be ridiculed for being too thin as opposed to overweight, and that's simply not the case. I find myself, because I'm so open about everything, especially in my blog, being harshly criticized or told off, or dispensed advice when I don't solicit opinions, though some of them I do appreciate and know it's done with love.

So perhaps knowing more about the medical side of my story will be helpful to those of you who care to gauge whether or not I'm a grown woman, capable of caring for herself. I'm small but mighty. Pancreatitis can suck it, so can random drug tests, fibromyalgia and hypoglycemia, and POTS. I'm just trying to live a productive life, simple as that. There's a lot getting in the way of that, which sucks, but what SHOULD I REALLY do? Live and let live.

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