Updates, rants, and weekend plans

[selenay]

Yesterday I saw Awesome GI Guy. The news was actually more encouraging than I'd hoped: I'm flaring but not too badly. I don't need a scope (phew!) and he's happy for me to continue with weekly Humira for now, which is a lot better than I'd expected. I walked out with instructions to increase my other meds to their max and a script for a new med to be used if things don't clear up in a couple of weeks. Provided nothing unexpected happens, he's happy not to see me again for another three months.

Although he did make unhappy faces at me because I didn't get any bloodwork done. Oops. I'm under instructions to get bloodwork done before my next appointment Or Else.

This is all a lot better than I'd expected. I find it very difficult to tell just how bad a flare is because my disease doesn't follow the text book. The symptoms most people get when they're really sick are my first symptoms. The stuff most people get early on are the symptoms that wait until I'm flaring pretty well. When I was first diagnosed my bloodwork looked horrific but now I can be in moderately bad flare and my bloodwork will look pretty good: my inflammatory markers won't be outside the normal range and my WBC will only be in the high end of normal. I'll show as slightly anaemic and that's it. But internally I'll be a mess and that really doesn't make treating this easy.

The only warning I get is that I'll suddenly hit what feels like a wall of exhaustion and then a couple of days later, bam. It becomes obvious why I'm exhausted. This time round, I've been flaring since late January and I only started to notice cramping around a week ago.

Stupid, ridiculous, rule-breaking disease. Why can't you just behave like everyone else's implementation? Why must you be special?

Awesome GI Guy and I had a bit of a chat about diet as well. He asked whether I was still taking an iron supplement and I explained that I take a multivit that's got a lot of iron in and I make an effort to eat a diet high in iron: lots of green leafy veg, oats and lentils.

At which point he looked concerned and asked whether I was eating any meat. I said that yes, I still eat it a couple of times a week but I've been getting some pressure to go veggie (specifically, a few people have given me the "there's no medical reason for you to continue eating meat" lecture lately) because it's probably healthier and better for the environment. He then demonstrated why he's the *Awesome* GI Guy because I've been told that I should absolutely definitely never be vegetarian. I've got a history of being unable to maintain my iron levels and losing blood easily. There's no way I'll be able to be vegetarian and keep my iron levels in a place that can cope with my normal level of blood loss without a lot of iron supplements.

I also mentioned that people kept suggesting I give up dairy and wheat, which I'm resisting, and he backed me up on that as well. Woot!

The problem with bowel disease is that everyone knows someone who stopped eating such-and-such food and they got better. What nobody offering me advice wants to hear is that a normal, sensible, balanced diet is what my GI wants me to eat.

*sigh*


Onto more cheerful things!

My local con announced yesterday that they've got Peter Davidson as a guest! *cue running around shrieking*

While Sylvester McCoy is my favourite Doctor (from Old Who) in terms of having the best stories, Peter Davidson is *my* Doctor because he was my first and that always stays special. So I'm rather over the moon and definitely planning on attending :-D

They've got a few interesting names including J. August Richards. On the one hand, I'd love to see him. On the other hand, I'm assuming he'll probably pull out as he's got a major role on the SHIELD TV show and when (I'm no longer going with 'if' here) ABC picks that up officially, I'd imagine he'll have filming commitments that will make jaunting up to Canada rather tricky.

I try very hard never to book for cons based on one single guest. Odds are always good that something will happen and that guest won't be there.

My local con is more of a big media con than I really like these days but they're making an effort not to have everything revolving around the big name guests, which I'm fully in support of. Knowing there are multiple programming tracks makes me much more likely to attend. I'd love it if there were some more fan-oriented tracks and maybe a literary track, but I can't have everything. And hey, at least there's a con here of some kind :-D

This weekend is going to be mostly about sleeping and maybe some napping. It's been an exhausting week and I'm running on fumes today. I've got a pizza in the freezer for supper tonight and I plan to completely veg out and catch up on some TV. The cats are going to appreciate this plan because they've started to act rather cuddle-deprived and mournful every time I get up and have to go somewhere. Poor petals.

Comments

[katlinel]

Sympathies over the flaring and the diet. I've had people express disbelief that a low-fibre diet means for me that I'm in better health than being on a high-fibre one because they can't cope with anything outside the orthodoxies of so-called healthy eating. You can't turn round without someone telling you why meat, dairy and wheat are responsible for every single problem in the modern world; I ignore them on the grounds they're not my GI consultant, nor are they the specialist nurses and nor are they me, living with my body.

[snottygrrl]

being as i'm somewhat late to the party, my guess is that you have some version of what i had, though i know there are a bajillion iterations. i did the no dairy/no wheat thing for a long time, but for me that made a difference. course these days i don't have a colon any more and eat almost anything. er, that's probably tmi.

[selenay]

I've had people express disbelief that a low-fibre diet means for me that I'm in better health than being on a high-fibre one because they can't cope with anything outside the orthodoxies of so-called healthy eating.

That's one of my favourite ones. It causes such a double-take. I'm not very good at easting a truly low-fibre diet but I definitely eat less fibre than I used to. And when I'm flaring badly and my GI instructs me to cut the fibre way back, I reluctantly do it :-( Thankfully, he's happy for me to eat a normal-ish diet within reason when I'm only minorly flaring or not flaring at all.

Every now and again I do something really stupid like eat a huge salad or allow my sister to feed me a vegetable stew and I regret it but I'm slowly learning.

[selenay]

Sounds like I probably do have some version of what you had, if you're colon-free now :-D So far, I've not noticed any difference whether I eat dairy/wheat or not so I'm not planning to cut them out completely. I've noticed that if I accidentally eat way too much fibre then I feel pretty miserable but that's my only real food issue. I just try to eat healthy and sensible and not go mad on the beans and lentils (even when my vegan father is visiting, which is difficult) and I really appreciate having a GI who feels the same way about food that I do.