Plan B is a go
Mar. 21st, 2011 07:37 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
selenaySaw lovely GI Guy today. All my tests came back negative so I'm cleared for Humira. Woo! He sent the email while I was in the office and by the time I got home from work, there was a voice mail waiting for me. It was too late to actually speak to anyone by that stage, but I'll be calling tomorrow to get the paperwork rolling and hopefully I'll have an appointment to do my loading doses and learn how to inject myself by the end of the week.
It's all a bit scary, but I'm rather excited by the thought of finally not bleeding all the time and having my energy back. He's also ordered blood work to check my HGB, which we suspect is dropping rather nicely, although he is certain that it will start to go back up once the Humira is working.
Let's just all hope that the Humira works before my HGB is low enough to need another transfusion, shall we?
I've been struggling a bit lately with guilt. Yes, this is insane but hear me out. Every time I see the blood, my first thought is "Is this something I'm doing? Am I eating something or doing something to cause this?"
I know logically that this has got nothing to do with my diet. Or my activities. Or anything. This is my body being insane.
It hasn't stopped me feeling this way. Nor has it stopped me looking at everything I put in my mouth and worrying that it might be the thing that's killing me. I've been making myself eat regularly, but I can see why patients with ulcerative colitis lose weight: you get afraid to eat after a while just in case you're doing the wrong thing.
One of the reasons that I like GI Guy, aside from the fact that he's genuinely trying to help me, is that he seems to understand these thought processes and he's great about talking me down. He reassured me that it's nothing I'm doing, it's nothing I'm putting into my body, I could stop eating entirely (not recommended!) and I'd still be bleeding a bit. I'm eating what I should be and it's fine to keep eating things like veggies because I can't just cut out everything that might ever have been hinted at making UC worse.
That would be every food known to man, BTW, if you're curious.
Most UC patients tend to do what I'm doing (eating a bit less, cutting out/down on known irritants like high-fibre, seeds and coffee), either unconsciously or deliberately, which tends to make us feel better but doesn't stop the bleeding. It's something that apparently physicians have to remember when discussing symptoms because often it's not something we're even aware that we're doing.
And the bleeding is the main symptom of UC. It sounds like it's the hardest one to defeat and the one that diet doesn't do much to. Apparently some patients hardly have any pain or diarrhoea, it's nearly all bleeding.
Of course, the fact that I'm bleeding at 40mg of prednisone is not a good thing because it means pred isn't working completely for me. Bugger. But that's not my fault and there's nothing that I can do to make it work.
I really need to remember that. It sounds like I'm not the first (or last) UC patient to go through this. In fact, he sounds rather well-practised at talking people down from the guilt, self-blame and worry. Even that helps because it makes me normal for a UC patient and not a paranoid crazy person.
Inflammatory bowel disease does a real number on your head sometimes.
In other news, my useless GP has been proved to be useless by someone other than me. The pharmacist is going to try to explain to him that just because the chemicals in two different birth control pills are the same, that does not mean you can just prescribe whatever you feel like. You also have to make sure that the dosages are the same. Prescribing me the wrong one because you couldn't find the right one on your computer screen? Is not a help! Hopefully the pharmacist will have more luck than I did. I spent twenty minutes trying to argue that he'd written the wrong script and he wouldn't believe me. Argh.
And in insane news, how many IT professionals does it take to change the battery in a phone headset? It turns out, you need at least three...
It's all a bit scary, but I'm rather excited by the thought of finally not bleeding all the time and having my energy back. He's also ordered blood work to check my HGB, which we suspect is dropping rather nicely, although he is certain that it will start to go back up once the Humira is working.
Let's just all hope that the Humira works before my HGB is low enough to need another transfusion, shall we?
I've been struggling a bit lately with guilt. Yes, this is insane but hear me out. Every time I see the blood, my first thought is "Is this something I'm doing? Am I eating something or doing something to cause this?"
I know logically that this has got nothing to do with my diet. Or my activities. Or anything. This is my body being insane.
It hasn't stopped me feeling this way. Nor has it stopped me looking at everything I put in my mouth and worrying that it might be the thing that's killing me. I've been making myself eat regularly, but I can see why patients with ulcerative colitis lose weight: you get afraid to eat after a while just in case you're doing the wrong thing.
One of the reasons that I like GI Guy, aside from the fact that he's genuinely trying to help me, is that he seems to understand these thought processes and he's great about talking me down. He reassured me that it's nothing I'm doing, it's nothing I'm putting into my body, I could stop eating entirely (not recommended!) and I'd still be bleeding a bit. I'm eating what I should be and it's fine to keep eating things like veggies because I can't just cut out everything that might ever have been hinted at making UC worse.
That would be every food known to man, BTW, if you're curious.
Most UC patients tend to do what I'm doing (eating a bit less, cutting out/down on known irritants like high-fibre, seeds and coffee), either unconsciously or deliberately, which tends to make us feel better but doesn't stop the bleeding. It's something that apparently physicians have to remember when discussing symptoms because often it's not something we're even aware that we're doing.
And the bleeding is the main symptom of UC. It sounds like it's the hardest one to defeat and the one that diet doesn't do much to. Apparently some patients hardly have any pain or diarrhoea, it's nearly all bleeding.
Of course, the fact that I'm bleeding at 40mg of prednisone is not a good thing because it means pred isn't working completely for me. Bugger. But that's not my fault and there's nothing that I can do to make it work.
I really need to remember that. It sounds like I'm not the first (or last) UC patient to go through this. In fact, he sounds rather well-practised at talking people down from the guilt, self-blame and worry. Even that helps because it makes me normal for a UC patient and not a paranoid crazy person.
Inflammatory bowel disease does a real number on your head sometimes.
In other news, my useless GP has been proved to be useless by someone other than me. The pharmacist is going to try to explain to him that just because the chemicals in two different birth control pills are the same, that does not mean you can just prescribe whatever you feel like. You also have to make sure that the dosages are the same. Prescribing me the wrong one because you couldn't find the right one on your computer screen? Is not a help! Hopefully the pharmacist will have more luck than I did. I spent twenty minutes trying to argue that he'd written the wrong script and he wouldn't believe me. Argh.
And in insane news, how many IT professionals does it take to change the battery in a phone headset? It turns out, you need at least three...
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no subject
Date: 2011-03-22 07:19 am (UTC)So, I'm no help. I can offer no advice that will make you feel better about feeling better. So... *squish*
no subject
Date: 2011-03-22 10:29 pm (UTC)I don't think anger is going to help with this because it will just start a spiral of anger and then depression over how my body is betraying me. I've already done the anger over the doctor who told me to drink peppermint tea. Now I'm working towards accepting it all and working out how to keep the life I enjoy despite it.
I am assured that I'll be allowed my fibery, seedy noms when I'm in remission. So that's something to look forward to :-)
no subject
Date: 2011-03-22 07:47 am (UTC)lol at the headset thing!
Take care and all the best. Love and light xxx
no subject
Date: 2011-03-22 10:33 pm (UTC)So, tomorrow I'm calling to see about moving to a new practice with a GP that several friends recommend as awesome.
no subject
Date: 2011-03-22 03:31 pm (UTC)I often wonder am I doing something wrong, to cause so many dislocations?
Well.. no..
But I can't help wondering it.
On the bleeding side, I really do get into huge twists of logic about what I'm eating. But then I don't have UC, I have weird side issues of EDS causing bleeding in my GI system.
And I know for a fact that it's made worse by eating bad things.
Annoyingly, I can't seem to give up those bad things for various reasons - finding affordable gluten-free, lactose-free, guarenteed nut-free, and a load of other allergen-free, vegetarian ready meals is next to impossible, and cooking daily is impossible for me.
The brain is an odd thing.
Disease and disability in particular.. I think it's partly because of the social response to disease / disability. We're MADE to feel guilty, and we often don't realise that - it's a subtle, subconscious undermining of our very being.
Sorry... must not waffle lots on other people's lj's!
no subject
Date: 2011-03-22 10:37 pm (UTC)There is a big message in society that if you're chronically ill, it must be because you're not trying hard enough to get better. Disease and disability scare people. At the back of their minds, they know it could happen to them but they don't want to think about it, so they unconsciously decide that it must be the disabled person's fault. With all the crap out there about benefit scroungers with 'fake' illness and the way that most people hide from illness and disability until it happens to them, is it any wonder that we're made to feel like something scraped off someone's shoe because we're ill?
Don't worry about waffling :-) Know that I'm not the only person who is feeling this way helps a lot.
no subject
Date: 2011-03-27 07:06 pm (UTC)rachat de credit proprietaire
Date: 2011-04-23 01:48 pm (UTC)