KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
For many years, I've had
chemical sensitivities, and I've had
reactive hypoglycemia most of my life, so I'm no stranger to being aware of what's in my food. A few years ago, my blood sugar became a bigger issue -- harder to control, often too high, but still manageable with diet and exercise. So, then it was MCS and diabetes -- still not so awful in terms of living with people in the world. It wasn't until my recent health crisis that the wheels came off and I crashed...
During the week leading up to Christmas, I started having flank pain. Lots of it. I'm generally pretty good at ignoring these things, so I put it off for a few days. The pain kept getting worse, and I started making my father's noises (you know, the ones you hear your parents make when they get aches and you swear you will never sound like that???) every time I reached to get something from a high cupboard. I convinced myself that I must be having a gallbladder thing, and when it finally got intolerable, I went to the hospital. I was sure that I would part ways with my gallbladder and be done with this irritating pain. Turned out that my gallbladder was pristine. Liver, fine (how did that happen?) Pancreas, good.
But my kidneys were bleeding.
After many tests and visits to specialists, it turns out that I have IgA Nephropathy. When my immune system produces IgA proteins, they plug up my kidneys and cause inflammation -- glomerulonephritis. This causes end stage kidney disease in about 25% of cases, but since I don't have an autoimmune disorder, I will probably escape that fate if I take care of myself.
That's why I eat like a freak now. But I dodged a big bullet.
Most of the time, nobody discovers this condition until there is significant kidney damage and they are near end stage kidney disease. I still have good kidney function, and have a good chance of keeping it. IgA protein gets elevated when them mucosal immune system gets triggered. Anything respiratory or digestive is an issue. It's important that I avoid getting flu-like viruses or irritating my digestive tract, because that will get a bout of nephritis started.
There isn't a good treatment for this disease, and I want to avoid the current standard of care -- which is steroid therapy. The side effects, particularly with respect to diabetes, could make me much sicker. Instead, I choose to be closely monitored and take an alternative approach. This is a strict diet with supplements of omega fatty acids, turmeric, and cinnamon. Even mainstream doctors recognize this as having theraputic value, so if my kidney function remains good, I will keep doing it.
That's why I eat like a freak. I avoid grain, alcohol, sugar, most chemcial additives, and gluten. Why do I list gluten when I already avoid grain? Trace gluten is everywhere. I can't even lick an envelope! And I completely blew it this weekend. I'm paying, too. My hands and feet and face are swollen, I'm tired, and I'm even a little sick to my stomach. So, I'm writing this diary as if I'm an expert at sticking to a strict diet when I'm not. But we can have that discussion...
The biggest inconvenience is that I can't assume anything I didn't make myself is gluten free. I can't just grab something at a deli. And most "gluten free" prepared foods contain sugar or something else I have to avoid. It's a major hassle to eat with other people -- which brings me to my personal rant: Why do people care so dang much about what I eat?
What's the matter? Our food not good enough for you?
People get hostile when you won't try their pasta salad. What to do? Must I launch into a detailed discussion of my medical history to justify my not tasting this stuff? Do I walk away and leave them feeling snubbed? I'll tell you what I don't do -- I don't tell them that I'm on a diet.
Oh, you can have just a little taste. You can be a little bad, it won't hurt.
It will hurt. Don't be that guy. And don't the be guy who tells me about this diet book or that diet program that I should be on instead. Or when I request food without starch, don't ask me if I'm "one of those Atkins dieters." And whatever you do, don't be this guy (staring while imagining me hiding in a corner in the middle of the night with a pint of ice cream and a spoon):
You can't possibly survive on a little protein, vegetables, and nothing else.
Translation (whether you mean it that way or not): you can't possibly be fat as you are and eat that little. I once had a waiter bring me a double order of spinach because he was sure I needed more food. He charged me for it, too.
You can't eat that way. You have to have your carbs. You need a low fat, high carb diet to be healthy.
No, I don't. That notion was based on one flawed study, and it was dismissed by medical people more than a decade ago. Get current, please. And don't troubleshoot me. And if you're that guy, please don't roll your eyes in disgust because you don't believe me. Keep that disdain to yourself.
People surely get riled about their food. WTF?????
Of other things:
I will write a technical diary about IgA Nephropathy sometime if there is interest, but today I want to emphasize how much the Daily Kos community -- and KosAbility in particular -- is responsible for saving my kidneys.
My original "kidney infection" diagnosis didn't pass the smell test. I have to give credit to Patriot Daily News Clearinghouse for convincing me to go the hospital in the first place (she tried this for a few days prior and failed, but she didn't give up), and then hounding me to keep bothering doctors until my diagnosis made sense. Kitsap River, who answered my questions about diabetic kidney disease in a series of emails taught me all sorts of goodies about the racket and what to ask when I saw a nephrologist. And NurseKelley still harasses me to take care of myself. Kudos to them and the Daily Kos community.
But I never would have thought that I could have kidney disease if I hadn't read Kitsap River's diaries here at KosAbility. I'd have dropped the ball when the acute nephritis cleared, and I probably wouldn't have learned that I had a chronic disease until it was too late.