Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)
This is actually a blog post I've been meaning to write for a while. I live with two chronic diseases already - type 1 diabetes and autoimmune hepatitis (AIH) - and I've said for a while that if I was given the opportunity to get rid of one (and only one) of them, I'd get rid of the AIH. This topic gives me a chance to explain why.
For those of you unfamiliar with AIH there is a fairly good explanation on wikipedia here, but basically my immune system has declared war on my liver (see, it's that bloody immune system again), and is trying to destroy it. It's quite rare, and I have type 2, which is supposed to be even rarer. Diagnosis is through a variety of blood tests (to rule out other as much as anything else) and a liver biopsy (and oh, what fun that is). There can be many symptoms, but when I was waiting to be diagnosed I mainly had nausea, fatigue and jaundice. It's hard to explain to people how ill you are when those are the symptoms, because it just sounds like you're a bit sick and tired, but it was pretty damn horrendous. I had no energy, and I was so tired I would fall asleep watching tv, on the bus, sitting at my desk at work. Just getting up in the morning was an effort, and the nausea was constant, which made it difficult to eat normally.
It also messed with my blood sugars big time (it was actually first picked up after I had a seizure caused by low blood sugar) and my endo basically explained that my liver was having issues with pumping out it's normal levels of glucose - sometimes it would shove out more, other times it wouldn't be able to do that and the levels would drop. On top of that, the inflammation and stress on my body would be combining to push my levels up. It was a bit of a nightmare.
The treatment for AIH is steroids and immune suppression. For those of you who've ever had to deal with steroids and diabetes, I'm sure you can see the problem... I was lucky in that my hepatologist started me off on a dose that was a bit lower than they normally would, and I responded really well to that. My hep has been fantastic in trying to balance the AIH and diabetes, which has been incredibly helpful.
So, now my liver numbers have been in the normal range for about two years now, and a second biopsy I had a year ago showed that a the level of damage is considerably less than it was. I take a bunch of tablets every morning, and had regular blood tests to keep an eye on my liver function and my white blood cell count (something they have to do when you're on immune suppressants). IT doesn't sound too bad, right? So why would I get rid of it instead of diabetes?
Because I have no control over it.
Diabetes is a pain in the ass - I don't think anyone would dispute that . However, with diabetes I have a certain level of control. I can monitor my own blood glucose levels. I can take action if they are out of range. I can make changes to my treatment on my own, and I can monitor the effects of things like different types of food or exercise, and I can respond to those and then see the results. I have longer term monitoring at the clinic, but I'm in charge of the day to day stuff, and even when it's not behaving, there are generally things I can do. I don't feel helpless.
With the AIH, it's the complete opposite. I rely on blood tests and clinic visits to tell me how I'm doing. I have no idea what's going on with my numbers, so I can't respond to changes in them. Flare ups (where the immune system has another go, and your liver numbers rise again) aren't uncommon, and I can't head them off at the pass - basically I'll most likely end up with some of the same symptoms as before, and then have to wait to see my hep before I can change my medication to deal with it. AIH kills people if it's untreated, and I know of people who have had to have liver transplants because of it. Diabetes doesn't scare me the way that AIH does. I hate the feeling of being so helpless and basically at the whims of my immune system. I'd get rid of it in a heartbeat if I could.
In terms of how I treat people with other medical conditions, I think participation in the DOC has kind of changed that, but in a way I hadn't considered until I thought about it. In the DOC, we've all had those stupid questions from people who have no idea about diabetes. Thinking about other chronic conditions, I realise that I don't often know much about them. Being part of the DOC makes me stop and think before I ask questions or assume things, but this has also made me realise that, if I wasn't diabetic, I probably wouldn't know much about diabetes myself, which gives me a little bit more patience with those stupid questions. :)