splodgenoodles: (Default)
Today is/was a crash day, which would have been best spent at home. But I had the gastro appointment, so 10B had to leave work and take me in with the wheelchair.

Yesterday was infusion day, and I kept moving after I got home, so crashing out today was no surprise really.

CFS crash, not Crohn's.

Home now and planning to stay put until Friday, when I have to see my eye doctor. Have decided to ask for carer for that, because I think I might need the chair again and it looks like the springtime work frenzy might be starting up.

Gastro pretty comfortable that current crop of symptoms are either Cipro or Crohn's or CFS, nothing else sinister going on. Review in 6 weeks, continue keeping fingers crossed that the reinduction of infliximab does something, if it's going to, we'll know by then.

Eye inflammation best treated as is. (Oh and apparently eye symptoms are resolved with surgery...that is, surgery on the effected parts of the intestine.) But they don't have the letter from my eye doctor yet.

On the plus side, we stopped for quite a nice bowl of pho on the way home, needing a quick, low fuss meal so 10B could get on with a rash of things that need doing as soon as we got home. Yay for a restaurant that had a wheelchair accessible eating area....bummer about the toilet, but yay for being able to go there at all.

~~~

And in case anyone's wondering, Abbot and Peacock can take their fucked up, flippant and offensive attitudes to people like me and shove them up their respective arses. Wheelchair accessibility is not guff(see above) and I'm not even going to touch what Peacock said. Although if I can pull myself together, I'll put the details in a post for all you good folk in far flung lands.
splodgenoodles: (Default)
Today is/was a crash day, which would have been best spent at home. But I had the gastro appointment, so 10B had to leave work and take me in with the wheelchair.

Yesterday was infusion day, and I kept moving after I got home, so crashing out today was no surprise really.

CFS crash, not Crohn's.

Home now and planning to stay put until Friday, when I have to see my eye doctor. Have decided to ask for carer for that, because I think I might need the chair again and it looks like the springtime work frenzy might be starting up.

Gastro pretty comfortable that current crop of symptoms are either Cipro or Crohn's or CFS, nothing else sinister going on. Review in 6 weeks, continue keeping fingers crossed that the reinduction of infliximab does something, if it's going to, we'll know by then.

Eye inflammation best treated as is. (Oh and apparently eye symptoms are resolved with surgery...that is, surgery on the effected parts of the intestine.) But they don't have the letter from my eye doctor yet.

On the plus side, we stopped for quite a nice bowl of pho on the way home, needing a quick, low fuss meal so 10B could get on with a rash of things that need doing as soon as we got home. Yay for a restaurant that had a wheelchair accessible eating area....bummer about the toilet, but yay for being able to go there at all.

~~~

And in case anyone's wondering, Abbot and Peacock can take their fucked up, flippant and offensive attitudes to people like me and shove them up their respective arses. Wheelchair accessibility is not guff(see above) and I'm not even going to touch what Peacock said. Although if I can pull myself together, I'll put the details in a post for all you good folk in far flung lands.
splodgenoodles: (Default)
I suppose I could complain about how today's breakfast was interupted by a phone call and how this meant I had a hard boiled egg, not my beloved daily soft boiled egg.

The soft-boiled egg is a part of my daily routine that brings me a frightening amount of happiness.

I could even be bitter and go on about it relentlessly to whoever will stand still long enough to hear me. I'm still in my jarmies and I'm wearing my terrific new old-man-style dressinggown, which is the perfect outfit for standing at the front gate and stopping passers-by with my entirely legitimate concerns about the effect of modern forms of communication on the simple pleasures of life. So I'm all set up for a bit of disconcerting nuttery and let's face it, it's a lot of fun watching people feeling obliged to be polite and act like they have a clue what you're talking about.

However, I won't.

I won't because the call was from the good and beneficent IBD nurse, giving me the appointment times for my first three infusions of infliximab and follow up appointment, about which I'd been feeling a tad impatient.

Bless her and all who spring from her! May daisies and violets sprout from her footsteps, may songbirds sing for her where'er she goes, and make nests for their young from her long luscious hair.

I eat my hard boiled egg with loving gratitude.

Next I shall go outside and hug people. Won't that be nice?




I have to be there at nine o'clock in the morning...? Oh jeez.
splodgenoodles: (Default)
I suppose I could complain about how today's breakfast was interupted by a phone call and how this meant I had a hard boiled egg, not my beloved daily soft boiled egg.

The soft-boiled egg is a part of my daily routine that brings me a frightening amount of happiness.

I could even be bitter and go on about it relentlessly to whoever will stand still long enough to hear me. I'm still in my jarmies and I'm wearing my terrific new old-man-style dressinggown, which is the perfect outfit for standing at the front gate and stopping passers-by with my entirely legitimate concerns about the effect of modern forms of communication on the simple pleasures of life. So I'm all set up for a bit of disconcerting nuttery and let's face it, it's a lot of fun watching people feeling obliged to be polite and act like they have a clue what you're talking about.

However, I won't.

I won't because the call was from the good and beneficent IBD nurse, giving me the appointment times for my first three infusions of infliximab and follow up appointment, about which I'd been feeling a tad impatient.

Bless her and all who spring from her! May daisies and violets sprout from her footsteps, may songbirds sing for her where'er she goes, and make nests for their young from her long luscious hair.

I eat my hard boiled egg with loving gratitude.

Next I shall go outside and hug people. Won't that be nice?




I have to be there at nine o'clock in the morning...? Oh jeez.
splodgenoodles: (Default)
I am feeling so incredibly twitchy and pissed off. Box Hill still have not rung me about starting infliximab. I know it's not the end of the world, what's a few days here and there..?

However:

-I am afraid the application has been rejected and want reassurance that it's not (I've rung to check but have had no return call);
-I guess I figured that by now it would be happenning - and that I would be feeling better even if only for a while. It's like waiting and waiting for a taxi when you're standing outside on a hot and windy day;
-and I'm anxious about whether or not it will work, and whether or not I'll have bad side effects, to the point now that I just want it to happen rather than live with the uncertainty.

Really, in the whole scheme of things I have little to complain about here, I know I'm being irrational. All I have to do is just keep on surviving as I always do, and direct my thoughts to things I can control. But it's easier said than done.
splodgenoodles: (Default)
I am feeling so incredibly twitchy and pissed off. Box Hill still have not rung me about starting infliximab. I know it's not the end of the world, what's a few days here and there..?

However:

-I am afraid the application has been rejected and want reassurance that it's not (I've rung to check but have had no return call);
-I guess I figured that by now it would be happenning - and that I would be feeling better even if only for a while. It's like waiting and waiting for a taxi when you're standing outside on a hot and windy day;
-and I'm anxious about whether or not it will work, and whether or not I'll have bad side effects, to the point now that I just want it to happen rather than live with the uncertainty.

Really, in the whole scheme of things I have little to complain about here, I know I'm being irrational. All I have to do is just keep on surviving as I always do, and direct my thoughts to things I can control. But it's easier said than done.
splodgenoodles: (Lady Penelope's car.)
Some of you may recall my hope that infliximab become available for people with Crohn's Disease, followed by my cheery happiness when it got approved then by disappointment when it didn't happen after my doctor had thought it would happen by August and then that he didn't know when/if it was going to happen. Well...

I got an email this morning from the website of the remicade/infliximab petition. It will be available on the PBS from October.

This is lovely news. I guess my gastro just had his timelines wrong or there was some extra phaphing - or maybe faffing - to be be done at a senior level or something, although I confess that I think I might just wait until they're looking for a nice vein while they chat to me about the weather before I really get excited(it's delivered by infusion. ie - by iv). Although if I get a choice, I'll go onto the humira trial he told me about instead, because humira (adalumimab or something) looks easier and safer in the long run, and probably more effective.

Of course, there's absolutely no guarantee that I'll be deemed eligible to take either drug, no guarantee that one or another of them will work and no guarantee that there won't be side-effects that screw things up. And in the overall scheme of things re-my physical capacity, it's not likely to cause huge changes, it won't make me well, because it's (probably) not the Crohn's and/or the prednisolone that's making me so sick. But still, there's movement at the station.

If things work out as well as can be expected, I'll no longer be on prednisolone with all its attendant problems. If things work out as well as I hope (hope which is entirely unfounded and I shouldn't even think this way) I'll find that the adrenal suppression caused by the prednisolone was the cause of more trouble than anyone realised and don't worry, I won't be disappointed when this doesn't happen because I also wish to win Tattslotto on a regular basis and yet somehow manage to continue with life even though I don't.
splodgenoodles: (Lady Penelope's car.)
Some of you may recall my hope that infliximab become available for people with Crohn's Disease, followed by my cheery happiness when it got approved then by disappointment when it didn't happen after my doctor had thought it would happen by August and then that he didn't know when/if it was going to happen. Well...

I got an email this morning from the website of the remicade/infliximab petition. It will be available on the PBS from October.

This is lovely news. I guess my gastro just had his timelines wrong or there was some extra phaphing - or maybe faffing - to be be done at a senior level or something, although I confess that I think I might just wait until they're looking for a nice vein while they chat to me about the weather before I really get excited(it's delivered by infusion. ie - by iv). Although if I get a choice, I'll go onto the humira trial he told me about instead, because humira (adalumimab or something) looks easier and safer in the long run, and probably more effective.

Of course, there's absolutely no guarantee that I'll be deemed eligible to take either drug, no guarantee that one or another of them will work and no guarantee that there won't be side-effects that screw things up. And in the overall scheme of things re-my physical capacity, it's not likely to cause huge changes, it won't make me well, because it's (probably) not the Crohn's and/or the prednisolone that's making me so sick. But still, there's movement at the station.

If things work out as well as can be expected, I'll no longer be on prednisolone with all its attendant problems. If things work out as well as I hope (hope which is entirely unfounded and I shouldn't even think this way) I'll find that the adrenal suppression caused by the prednisolone was the cause of more trouble than anyone realised and don't worry, I won't be disappointed when this doesn't happen because I also wish to win Tattslotto on a regular basis and yet somehow manage to continue with life even though I don't.
splodgenoodles: (Default)
I only realised yesterday that I got that bad medical news on Friday 13th. I hadn't even noticed the date.

~~~

Yesterday was nice - time with friends - took my mind off things for a bit and got me out of the house. It was nice to see everyone.

~~~

And I now figure I'm no worse off than I was before I heard about infliximab, really. I'm a bit more upset about the cataracts than I had been, now that I know I'm not about to be coming off the pills that are causing the damn things, but I've had worse things happen and I've survived okay.

However it might be a while before I risk feeling hopeful about anything again, and I do feel kind of jaded and pissed off.

~~~

In other news, I just switched off the telly and the radiator in the living room. InsideCat had been happily sprawled in front of the radiator and she started to get up, and I couldn't help noticing how scrawny she is now, how unkempt her fur has become, and how much effort it took for her to get to her feet. She let me pick her up and bring her in here with me, 12 months ago she'd have had my arm off for trying a stunt like that.

But fortunately she has started eating again and stopped throwing everything back up, so maybe she'll start gaining weight again. And she still seems happy to be alive, which is our main concern.

~~~

Tonight I got this sudden urge to cook. Given that I can't cook (by Royal Decree and on pain of death) so all I've done to indulge it is make some porridge, and browse the PWMU cookbook while watching Angel with 10B. Hopefully the urge will pass soon. I figure it's been triggered off by both increased awareness of my own physical frailties and the awful things that happen to your bank balance the moment you so much as think about home improvements.

If it hasn't gone by tomorrow I'm going to make tuna mornay.

~~~
splodgenoodles: (Default)
I only realised yesterday that I got that bad medical news on Friday 13th. I hadn't even noticed the date.

~~~

Yesterday was nice - time with friends - took my mind off things for a bit and got me out of the house. It was nice to see everyone.

~~~

And I now figure I'm no worse off than I was before I heard about infliximab, really. I'm a bit more upset about the cataracts than I had been, now that I know I'm not about to be coming off the pills that are causing the damn things, but I've had worse things happen and I've survived okay.

However it might be a while before I risk feeling hopeful about anything again, and I do feel kind of jaded and pissed off.

~~~

In other news, I just switched off the telly and the radiator in the living room. InsideCat had been happily sprawled in front of the radiator and she started to get up, and I couldn't help noticing how scrawny she is now, how unkempt her fur has become, and how much effort it took for her to get to her feet. She let me pick her up and bring her in here with me, 12 months ago she'd have had my arm off for trying a stunt like that.

But fortunately she has started eating again and stopped throwing everything back up, so maybe she'll start gaining weight again. And she still seems happy to be alive, which is our main concern.

~~~

Tonight I got this sudden urge to cook. Given that I can't cook (by Royal Decree and on pain of death) so all I've done to indulge it is make some porridge, and browse the PWMU cookbook while watching Angel with 10B. Hopefully the urge will pass soon. I figure it's been triggered off by both increased awareness of my own physical frailties and the awful things that happen to your bank balance the moment you so much as think about home improvements.

If it hasn't gone by tomorrow I'm going to make tuna mornay.

~~~
splodgenoodles: (Default)
I just got back from the gastro. You may recall I was going in to get everything sorted out so I could try infliximab, a new(ish) drug for Crohn's, that, if it worked, would enable me to stop taking prednisolone which is fucking me up in more ways that I can be bothered listing right now.

He met with the drug reps today and for reasons no one understands, infliximab is not yet on the PBS and at this point, no one knows when (or if) it's going to happen.

So my treatment does not change at this point.

Would anybody like a cataract? I have a couple I don't want.

I've just checked out the websites that I would look to for details on this matter, but they say nothing. Maybe it's just that we heard wrong when we heard that it would be happenning around about now.

But he did tell me that there is a research project happenning soon involving a drug called Humira. Humira is already available in the US - I see people discussing it in the relevant LJ communities all the time - and is actually, probably, all things being equal, the drug that will eclipse infliximab anyway. He said he will put my name forward when the time comes. He couldn't recall whether or not it's placebo or open-label, he thinks the latter, and the difference will be in the dosing regimes. He also said that if it works for you, they will give you ongoing access to the drug for a further two years. I suspect my complex medical history will exclude me but it's kind of him to put me forward and I'll certainly jump through the hoops and see what happens.
splodgenoodles: (Default)
I just got back from the gastro. You may recall I was going in to get everything sorted out so I could try infliximab, a new(ish) drug for Crohn's, that, if it worked, would enable me to stop taking prednisolone which is fucking me up in more ways that I can be bothered listing right now.

He met with the drug reps today and for reasons no one understands, infliximab is not yet on the PBS and at this point, no one knows when (or if) it's going to happen.

So my treatment does not change at this point.

Would anybody like a cataract? I have a couple I don't want.

I've just checked out the websites that I would look to for details on this matter, but they say nothing. Maybe it's just that we heard wrong when we heard that it would be happenning around about now.

But he did tell me that there is a research project happenning soon involving a drug called Humira. Humira is already available in the US - I see people discussing it in the relevant LJ communities all the time - and is actually, probably, all things being equal, the drug that will eclipse infliximab anyway. He said he will put my name forward when the time comes. He couldn't recall whether or not it's placebo or open-label, he thinks the latter, and the difference will be in the dosing regimes. He also said that if it works for you, they will give you ongoing access to the drug for a further two years. I suspect my complex medical history will exclude me but it's kind of him to put me forward and I'll certainly jump through the hoops and see what happens.
splodgenoodles: (gruntled bears)
Gosh my entries are humdrum at the mo...I'm feeling reasonably chipper though. And last week's drama and worsened health appears to have been a glitch, which has certainly cheered me up some.

~~~

The plumbers are finally here to install the greywater system and [livejournal.com profile] tenbears is doing the garden irrigation side of things on Wednesday.

~~~

My Case Manager just emailed to say she's applying for $$ to help towards the scooter. If she's successful it will bring the cost down by lots and lots. And now the hired scooter has gone, I've forgotten all about being self-conscious and angsty and keep thinking about things I'd like to do as soon as I get my own.

~~~

The architect is coming back on Monday to take measurements and have more of a chat - this time it's our turn to talk about what we want. He seemed genuinely pleased that we want to proceed with him, which is nice because he was interesting and fun to talk to. Of course he may be less pleased when he finds out he cannot shut us up, and just how many things we definitely do or definitely don't want. We tend to be a little....eccentric?... about the sort of things that are important to us.

~~~

I am inordinately excited about the prospect of a medication change and have to keep calming myself down. You see I've started to imagine it doing more good than we expect so I really need to nip this one in the bud. But also, I'm just dying to be off prednisolone. This stuff has changed me so much, I'd given up on ever getting to change back. It will be very weird though, and I might end up with the saggiest boobs in the whole world not that that's my main preoccupation or anything, on account not only of possible weight loss but also of weight shifting. Even if the prednisolone doesn't make you gain weight, it can change your proportions. When I first went on it as a maintenance thing, it was like going through adolescence all over again - I (quite suddenly) found I moved differently and I wandered round feeling generally gawky and awkward for months. Favourite comfortable clothing was now uncomfortable and stretched in odd places. And the temperature thing: I used to love the heat, suddenly I couldn't stand it. And my skin: I know I'm not going to have 26 year old skin again, not without committing a vile crime anyway, but it might just stop being so manky. There's about 15 more things I can think of that might change, but I'll spare you the list.

I wonder if my hair will go back to being really curly?

~~~

On an entirely different note, I finally got [livejournal.com profile] tenbears into Ultraviolet, we finished it last night. It was my second viewing and I could probably watch it again in a week or two. And we go see Harry Potter tomorrow night.

~~~

Now, if I can just get a bit of focus and make conscious choices about how I want to use the rest of the day instead of letting it drift, things will be even nicer.
splodgenoodles: (gruntled bears)
Gosh my entries are humdrum at the mo...I'm feeling reasonably chipper though. And last week's drama and worsened health appears to have been a glitch, which has certainly cheered me up some.

~~~

The plumbers are finally here to install the greywater system and [livejournal.com profile] tenbears is doing the garden irrigation side of things on Wednesday.

~~~

My Case Manager just emailed to say she's applying for $$ to help towards the scooter. If she's successful it will bring the cost down by lots and lots. And now the hired scooter has gone, I've forgotten all about being self-conscious and angsty and keep thinking about things I'd like to do as soon as I get my own.

~~~

The architect is coming back on Monday to take measurements and have more of a chat - this time it's our turn to talk about what we want. He seemed genuinely pleased that we want to proceed with him, which is nice because he was interesting and fun to talk to. Of course he may be less pleased when he finds out he cannot shut us up, and just how many things we definitely do or definitely don't want. We tend to be a little....eccentric?... about the sort of things that are important to us.

~~~

I am inordinately excited about the prospect of a medication change and have to keep calming myself down. You see I've started to imagine it doing more good than we expect so I really need to nip this one in the bud. But also, I'm just dying to be off prednisolone. This stuff has changed me so much, I'd given up on ever getting to change back. It will be very weird though, and I might end up with the saggiest boobs in the whole world not that that's my main preoccupation or anything, on account not only of possible weight loss but also of weight shifting. Even if the prednisolone doesn't make you gain weight, it can change your proportions. When I first went on it as a maintenance thing, it was like going through adolescence all over again - I (quite suddenly) found I moved differently and I wandered round feeling generally gawky and awkward for months. Favourite comfortable clothing was now uncomfortable and stretched in odd places. And the temperature thing: I used to love the heat, suddenly I couldn't stand it. And my skin: I know I'm not going to have 26 year old skin again, not without committing a vile crime anyway, but it might just stop being so manky. There's about 15 more things I can think of that might change, but I'll spare you the list.

I wonder if my hair will go back to being really curly?

~~~

On an entirely different note, I finally got [livejournal.com profile] tenbears into Ultraviolet, we finished it last night. It was my second viewing and I could probably watch it again in a week or two. And we go see Harry Potter tomorrow night.

~~~

Now, if I can just get a bit of focus and make conscious choices about how I want to use the rest of the day instead of letting it drift, things will be even nicer.
splodgenoodles: (hypocrates)
Today I saw the endocrinologist.

According to the path report from my bone densitometry scan:

The values show a loss in bone density which does not meet WHO criteria for osteoporosis but does indicate a mild increase in fracture risk.
(For those who came in late, this is a vast improvement on straight out osteoporosis).

More specifically, lumbar spine is a tad worse, but not enough that she's concerned AND the bone density of my hips is now within normal range.


Go me! Go my dense bones!


Also, I am no longer vitamin D deficient.

Go me! Go my appropriate vitamin intake! Boo sucks to sunlight and healthy eating! Hooray for drugs that do it for you!

AND I simply don't have any blood-testable markers for PCOS anymore. She cannot explain this and does not understand, especially since my weight has increased not decreased. In fact, my hormones are mostly well below average. This is brilliant.

Go me! I am a medical conundrum! (Who doesn't have PCOS, which is potentially quite nasty!) Hooray!

Then we got onto the interesting stuff (Cut so only the stalkers need know). )

Damn but I wish one or two other medical folk were as proactive as this.
splodgenoodles: (hypocrates)
Today I saw the endocrinologist.

According to the path report from my bone densitometry scan:

The values show a loss in bone density which does not meet WHO criteria for osteoporosis but does indicate a mild increase in fracture risk.
(For those who came in late, this is a vast improvement on straight out osteoporosis).

More specifically, lumbar spine is a tad worse, but not enough that she's concerned AND the bone density of my hips is now within normal range.


Go me! Go my dense bones!


Also, I am no longer vitamin D deficient.

Go me! Go my appropriate vitamin intake! Boo sucks to sunlight and healthy eating! Hooray for drugs that do it for you!

AND I simply don't have any blood-testable markers for PCOS anymore. She cannot explain this and does not understand, especially since my weight has increased not decreased. In fact, my hormones are mostly well below average. This is brilliant.

Go me! I am a medical conundrum! (Who doesn't have PCOS, which is potentially quite nasty!) Hooray!

Then we got onto the interesting stuff (Cut so only the stalkers need know). )

Damn but I wish one or two other medical folk were as proactive as this.
splodgenoodles: (hypocrates)
These are very rough notes, I'll need to look stuff up later, I just wanted to get it all out of my head for a while, so I can go and have a lie down.

Infliximab: questions, pros and cons. )
splodgenoodles: (hypocrates)
These are very rough notes, I'll need to look stuff up later, I just wanted to get it all out of my head for a while, so I can go and have a lie down.

Infliximab: questions, pros and cons. )

Profile

splodgenoodles: (Default)
splodgenoodles

June 2017

S M T W T F S
    123
45678910
11 121314151617
18192021222324
252627282930 

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Jul. 24th, 2017 06:40 pm
Powered by Dreamwidth Studios