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. :)
Showing posts with label DOC. Show all posts
Showing posts with label DOC. Show all posts
Friday, 17 May 2013
Wednesday, 15 May 2013
Diabetes Blog Week Day 3: Memories
Today we’re going to share our most memorable diabetes day. You can take this
anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that
you’d like to share. (Thanks to Jasmine of Silver-Lined
for this topic suggestion.)
This was actually a far harder post than I thought it would be to write. When I first started to think about writing this post, all the memories that immediately sprang to mind were all negative. The strongest memories I have related to diabetes are things like dreading going to clinic when I was a child, because I always expected to get yelled at. The times I've passed out and woken up to paramedics. The time I ended up in hospital with DKA because of a GP that didn't know the difference between type 1 and type 2.
But I didn't want to write about any of those things, because living with diabetes is crap enough without constantly having a negative mental association with it. So I had a think, and I've come up with a more positive set of memories I wanted to write about, mainly because for me it represents a huge milestone in my attitude toward my diabetes care.
When I moved down to Cambridge six and a half years ago, I wasn't in a particular great place in terms of my diabetes. I was on two injections of Mixtard a day, my HbA1c was in double figures, and I was going through a fairly extended burnout. Things changed a little bit when I started attending Addenbrooke's - I was put on MDI and taught the basics of ratios, so I was on a much better regime but I was still very much in burnout. I had an annual review, where my endo looked at me and "you're smarter than this, you can get better results." It was the first time in about ten years that anyone had said that to me about my diabetes, and actually offered to help me do it. Things didn't immediately get better, but it planted a seed, and a few weeks later I was floating about on the interwebs (as you do), when I googled something (can't even remember what it was now), and I ended up on the diabetesdaily forum.
It was eye-opening.
Here were a whole bunch of people, all with diabetes, with similar diabetes issues and regimes and thoughts to me, and they were talking about it and discussing ways to help. Up to this point, I knew one other person with diabetes, a fellow type 1 who was also and seemed to get on great with it. I'd never met anyone - online or off - who seemed to be going through the same issues as I was. I can't even explain it, it was like someone lit a fire in my brain. I started reading everything I could, and that whole feeling of belonging, of having finally found people who understood what it was like to live with diabetes, never went away (it never has, even to this day). I introduced myself, I asked for advice, and the support I received was amazing. I started testing again, and instead of getting angry at the high numbers and giving up, I started trying to figure out why I was getting those numbers, and making changes. I picked up some books, I set about educating myself in all the new things about diabetes management that had passed me by. I started seeing changes, and feeling better, and that just motivated me to work harder.
The HbA1c I had at the annual review was 9.4. Four months later, with the new knowledge and work I'd put in it was 7.5. Six months after that it was 6.9. I've done DAFNE, I'm now on a pump, and my HbA1c has been 7 or less for the past three and a half years, and I'm really proud of that. I never thought that was even possible when I was still in Glasgow. And it's all because of stumbling onto that site, and finding the DOC. A very important and positive memory in my diabetes history. :)
This was actually a far harder post than I thought it would be to write. When I first started to think about writing this post, all the memories that immediately sprang to mind were all negative. The strongest memories I have related to diabetes are things like dreading going to clinic when I was a child, because I always expected to get yelled at. The times I've passed out and woken up to paramedics. The time I ended up in hospital with DKA because of a GP that didn't know the difference between type 1 and type 2.
But I didn't want to write about any of those things, because living with diabetes is crap enough without constantly having a negative mental association with it. So I had a think, and I've come up with a more positive set of memories I wanted to write about, mainly because for me it represents a huge milestone in my attitude toward my diabetes care.
When I moved down to Cambridge six and a half years ago, I wasn't in a particular great place in terms of my diabetes. I was on two injections of Mixtard a day, my HbA1c was in double figures, and I was going through a fairly extended burnout. Things changed a little bit when I started attending Addenbrooke's - I was put on MDI and taught the basics of ratios, so I was on a much better regime but I was still very much in burnout. I had an annual review, where my endo looked at me and "you're smarter than this, you can get better results." It was the first time in about ten years that anyone had said that to me about my diabetes, and actually offered to help me do it. Things didn't immediately get better, but it planted a seed, and a few weeks later I was floating about on the interwebs (as you do), when I googled something (can't even remember what it was now), and I ended up on the diabetesdaily forum.
It was eye-opening.
Here were a whole bunch of people, all with diabetes, with similar diabetes issues and regimes and thoughts to me, and they were talking about it and discussing ways to help. Up to this point, I knew one other person with diabetes, a fellow type 1 who was also and seemed to get on great with it. I'd never met anyone - online or off - who seemed to be going through the same issues as I was. I can't even explain it, it was like someone lit a fire in my brain. I started reading everything I could, and that whole feeling of belonging, of having finally found people who understood what it was like to live with diabetes, never went away (it never has, even to this day). I introduced myself, I asked for advice, and the support I received was amazing. I started testing again, and instead of getting angry at the high numbers and giving up, I started trying to figure out why I was getting those numbers, and making changes. I picked up some books, I set about educating myself in all the new things about diabetes management that had passed me by. I started seeing changes, and feeling better, and that just motivated me to work harder.
The HbA1c I had at the annual review was 9.4. Four months later, with the new knowledge and work I'd put in it was 7.5. Six months after that it was 6.9. I've done DAFNE, I'm now on a pump, and my HbA1c has been 7 or less for the past three and a half years, and I'm really proud of that. I never thought that was even possible when I was still in Glasgow. And it's all because of stumbling onto that site, and finding the DOC. A very important and positive memory in my diabetes history. :)
Monday, 14 May 2012
Diabetes Blog Week 2012: Finding a Friend
Monday 4/14 It seems the most popular thing about Diabetes Blog Week is that it
helps us find blogs we weren’t reading yet and connect with some new
blog friends. With that in mind, let’s kick off Diabetes Blog Week by
making some new connections. Think about the d-blogs you read that you
think we may not know about and introduce us to one that you love!!
Let’s all find a new friend today!
There are several blogs I follow regularly, and you can see them on my reading list at the side here ->
I'm looking forward to seeing what other people post today and hope to pick up a few more blogs to add. It was difficult to pick a couple of blogs to highlight from my own list, but here goes!
Shootuporputup This was one of the first diabetes blogs I came across when I first started poking around the DOC. I immediately loved the attitude that Tim and Alison showed towards diabetes, and the blog is informative and funny and, when I first started reading it, one of the rarer UK-based blogs. I love the slightly irreverent view of diabetes while still acknowledging it as a serious thing. I'm very much a believer in using humour and fun to help you through things, and this site is a great example of that. One day I will make it to a shootup meetup - despite coming from Glasgow and visiting fairly often, I have yet to time it so that I'm up when there's a meetup in Edinburgh!
Everydayupsanddowns I came across Mike's blog after reading some of his posts on the diabetessupport boards. I found his blog to be just as thoughtful and interesting as his forum posts, and I continue to enjoy his posts. He posts wonderfully though out posts about his diabetes experiences, and I've particularly enjoyed reading his transition from MDI to pump. As someone who had no doubts of reservations about pumping, it has been really enlightening to read what it's like from the point of view of someone who was came at it in a more cautious way.
Sixuntilme I'm sure pretty much everyone already reads Kerri's blog, but it's one that has always struck a chord with me. I love the way Kerri blogs about life with diabetes, and again, it was one of the first I came across and had the whole 'omg it's not just me!!' revelation. One of the things that had particular struck me about this blog is that Kerri's a little bit ahead of me in dealing with the big things in life, like marriage and kids, and it's been especially inspiring to read about these things from someone who's actually going through it. I actually took printouts from the post about pumps and wedding dresses to my wedding dress person to show him what I wanted him to do with my pump, and it worked fantastically, and so when I think about what's going to happen in the future when we start thinking about kids, it's blogs like this that actually make me believe I can do it. :)
There are several blogs I follow regularly, and you can see them on my reading list at the side here ->
I'm looking forward to seeing what other people post today and hope to pick up a few more blogs to add. It was difficult to pick a couple of blogs to highlight from my own list, but here goes!
Shootuporputup This was one of the first diabetes blogs I came across when I first started poking around the DOC. I immediately loved the attitude that Tim and Alison showed towards diabetes, and the blog is informative and funny and, when I first started reading it, one of the rarer UK-based blogs. I love the slightly irreverent view of diabetes while still acknowledging it as a serious thing. I'm very much a believer in using humour and fun to help you through things, and this site is a great example of that. One day I will make it to a shootup meetup - despite coming from Glasgow and visiting fairly often, I have yet to time it so that I'm up when there's a meetup in Edinburgh!
Everydayupsanddowns I came across Mike's blog after reading some of his posts on the diabetessupport boards. I found his blog to be just as thoughtful and interesting as his forum posts, and I continue to enjoy his posts. He posts wonderfully though out posts about his diabetes experiences, and I've particularly enjoyed reading his transition from MDI to pump. As someone who had no doubts of reservations about pumping, it has been really enlightening to read what it's like from the point of view of someone who was came at it in a more cautious way.
Sixuntilme I'm sure pretty much everyone already reads Kerri's blog, but it's one that has always struck a chord with me. I love the way Kerri blogs about life with diabetes, and again, it was one of the first I came across and had the whole 'omg it's not just me!!' revelation. One of the things that had particular struck me about this blog is that Kerri's a little bit ahead of me in dealing with the big things in life, like marriage and kids, and it's been especially inspiring to read about these things from someone who's actually going through it. I actually took printouts from the post about pumps and wedding dresses to my wedding dress person to show him what I wanted him to do with my pump, and it worked fantastically, and so when I think about what's going to happen in the future when we start thinking about kids, it's blogs like this that actually make me believe I can do it. :)
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