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.

A strange sort of life I lead.

I am back to trying to pace and switch, and trying to work out the best timetable for resting.

...famous last words...

~~~

I've been feeling as though I'm finally managing to hold a lot of things at arm's length, for at least long enough to get a good's night sleep. Not last night though, I had a sudden attack of feelings and concern. Even though there's nothing that can be done or acted on, especially not at 2AM.

I envy people who do not know hypervigilance.

~~~

I am waking up unsure of what to do with my days and old routines aren't working well anymore. It seems to take a few hours before I am even clear headed enough to know whether I'm having a good day or not. It's probably a good time to try using CPAP again, and/or consider a second trial of Modafanil (the wakefulness drug) although there's quite a bit of medication tweaking going on at the moment with the Crohn's Disease drugs, so perhaps not quite just yet.

Decision making consumes an awful lot of one's quota of beans for the day, so I do need to hit on some basic routine that I can generally expect to manage without fuss, but that is still fulfilling enough that I don't feel empty and bored.

Too muzzy-headed for communication with others. Getting breakfast is okay. Washing is too challenging both physically and in terms of sensory overload, although soaking in the bath might be okay. Dunno really, I guess i'm just going to have to poke at things for a while and see what happens.

~~~

On a cheerful note (not that the other stuff is depressing - I actually feel it's neutral - just news), this business of the Crohn's behaving itself at long last is good fun. I've been eating fruit like it's going out of fashion. And all of a sudden I have found I like apples. And carrots! And I bought some muesli on Friday, two kinds. Plus avocadoes, bananas, grapes, cherries, tomatoes and a cantelope.

Unfortunately I'm probably eating more calories than I'm burning, but I was doing that while on the low-residue diet anyway. At least now I'm getting vitamins and minerals as well.

Oh, and I bought asparagus on Friday as well. My beloved asparagus patch is pretty much at the end of its season but I'm still hankering for it, so I gritted my teeth and bought non-home grown asparagus. But double bonus, I just went outside and found several spears among the ferns that I've allowed to grow that I figured I could safely pick. Heh. So now I have *lots* of asparagus.

I'm after some academic articles. Can someone please help me with these two?

1. Ann Med. 2001 Nov;33(8):516-25.
"Thalidomide treatment for refractory Crohn's disease: a review of the history, pharmacological mechanisms and clinical literature."
Ginsburg PM, Dassopoulos T, Ehrenpreis ED.

2. Gastroenterology. 1999 Dec;117(6):1278-87.
"An open-label pilot study of low-dose thalidomide in chronically active, steroid-dependent Crohn's disease."
Vasiliauskas EA, Kam LY, Abreu-Martin MT, Hassard PV, Papadakis KA, Yang H, Zeldis JB, Targan SR.


There may be more, but I'm buggered.

I've calmed down somewhat now. Two sleepless nights will do that to a girl.

(It's okay, I'm premenstrual and have finally accepted that two sleepless nights is part of the deal).

Basically, all that's really happenned is that a Proper Doctor(TM) has written down an opinion (without prompting) that accords quite strongly with one of the possibilities that I've been entertaining anyway.

But it still remains a theory.

The only way we can find out if it's true is to get me off prednisolone, which is where it gets complicated.

I'm probably going to be doing a few posts about the ins and outs of this.

But here's the guts of it for those who are wondering what the fuck I'm talking about and actually want to know (and feel free to ask if you're confused):

( blood and guts and fangs in my teeth )

In unrelated news, Fuzzychops The Outside Cat(TM) is having a bastard of a day. We've got proper winty weather happening here at the moment and I would let her stay on her little heated cat-mat in the laundry all day but well, we're having a clothing crisis at the moment and so we really need the laundry for you know, doing the laundry. So she's outside feeling sorry for herself.

We can't have her in there with the tumble dryer going - it freaks her right out. And worse, if we left her in there with the tumble dryer going for too long, it would stop freaking her right out. She'd get used to it. That would be even worse because then we'd never get her outside ever again except when she felt like going out.

It's kind of important to effective long term cat-wrangling that she remains convinced that the tumble dryer will eat her.

10 year anniversay of CFS coming up. Emotionally kind of heavy.

And now a highly respected endocrinologist disputes that diagnosis.

I feel her main symptoms are directly related to her prednisolone use and that she essentially has iatrogenic Cushing's syndrome.

If he's right, the implications are enormous. If he is not the implications are also enormous.

And hope - I'm scared of hope. Hope becomes dangerous when it fails you too often. I don't want to get hurt anymore.

And I'm scared of doing anything rash. Which I could do. When you see a potential way out of your situation, you can easily believe just because you want it so much.

I got the letter from him last night and I can't quite explain the emotional impact of seeing all this written down. Labels are powerful things. And this raised so many questions. And could change so much.

~~~

Last night Mum-in-Law came by and made a point of sitting me down and telling me not to protect her. That she's always kept her head in the sand and that she needs to stop and so I need to stop protecting her from the reality of my situation regarding the Crohn's Disease and what might lie ahead. She pointed out she's family, and she will cope and I'm not to worry about how she feels, she'll manage and she'll deal with her own issues.

God she's a trooper. As it happens, given I know how squeamish she is, I've been amazed at how well she *has* coped.

Family!

~~~

But now I have to fight. I have to push hard to get a chance to explore all options, to not simply go down the same road that others go. Because I don't want to go there, and I *am* willing to fight to avoid it. I *am* willing to try other options first and I need to find the people who will support me and help me in that. I've just got to find them, prove that I'm willing and get them on side, whether that's because they feel sorry for me, want to rescue me or are simply wanting to follow up on some research possibility that they like. Doesn't matter why. Shake them by the lapels and say 'take my body it's yours, do what you want'.

OMFG so much work to do. Soooo much.

(For those of you who aren't from round these parts: drugs on the Pharmaceutical Benefits Scheme are subsidised for certain medical conditions, which takes the price down from whatever the company charges to about $31ish for people on normal incomes and about a third of that if you're on a health care card. The PBAC is the Pharmaceutical Benefits Advisory Committee. As you can imagine, getting drugs listed for any given medical condition is a pretty big thing for all stakeholders.)

From both shehasathree and the Crohnology blog,
Humira is going to be listed on the PBS.

From The Age:
New drug on PBS for Crohn's disease


July 24, 2008 - 7:28PM

About 3,000 Crohn's disease sufferers will be able to access a subsidised drug to treat the condition from next week.

Crohn's disease is an inflammatory disorder of the gastrointestinal tract, which mostly affects people aged 15 to 35.

Sufferers of Crohn's disease can experience chronic abdominal pain, diarrhoea and bowel movements containing blood.

Symptoms include fever, anorexia, fatigue and joint pain.

Federal Health Minister Nicola Roxon said the drug adalimumab, sold under the brand name Humira, would be available to Crohn's sufferers under the Pharmaceutical Benefits Scheme from August 1.

She said patients will be able to self-administer by an injection under the skin rather than being admitted as a day patient to receive an infusion.

"At a time when people's household budgets are really under pressure, we will keep on doing everything we can to make sure that people who are suffering can afford the medicines they need," Ms Roxon said.

"This announcement will help thousands of Australians who battle with what can be a debilitating disease."

Gastroenterologist at the Royal Prince Alfred Hospital in Sydney, Warwick Selby, said Crohn's was a debilitating disease striking young people in the prime of their lives.

"Humira provides another treatment option for patients suffering from moderate to severe Crohn's disease who have not responded to conventional therapies," he said.

About 3,200 sufferers will be able to access the drug under the PBS in the first year, saving more than an estimated $20,000 each a year.

The extended listing of adalimumab will cost taxpayers $131.8 million between 2008-09 and 2011-12.

© 2008 AAP

I must say I find it vastly amusing that the author says that listing will mean sufferers are "saving more than an estimated $20,000 each a year". Bollocks. They aren't saving us money because most people can't afford the drug if it's not subsidised, end of story. Without the PBS, drugs like this just don't exist for very many people.

But I am very heartened by the news. Humira didn't seem to have much to offer me (although my gastro and I agreed we would try it again if it did get listed), but it will be a godsend for many people.

Also, it does look as though the PBAC is taking seriously the need to provide the range of new treatments that are being proven useful in managing Crohn's Disease. There are two more drugs in the same class (natalizumab/Tysabri and certolizumab pegol/Cimzia) that have recently been approved in the US for Crohn's which may prove useful to me - the listing of Humira leaves me optimistic that the PBAC will seriously consider these ones soon as well. And maybe they'll work for me.

~~~

Even though my experience on Humira wasn't a roaring success, there were some unexpected benefits, like increased overall energy. And there was a definite improvement in Crohn's-specific symptoms for a short period of time. So I'd like to try it again just to see what happens.

Unfortunately, research and after-release data shows that Humira can lose effectiveness over time for many people (and one of the selling points of the newer drugs that aren't approved here yet is that so far, they appear to remain effective for much longer).

On my fairly deliberate avoidance of people who have colds someone recently said:

"In some places, everyone just accepts that you get sick round about now, with the change of seasons.

I don't see why you should be any different."

I tend to assume that when one person complains or comments about something, there's another ten (at least) who agree but choose to keep their mouths shut.

So. This is for those ten (at least) people.

1. Because I am different. My body works differently. I am immuno-suppressed. The medications for Crohn's Disease are *all* immunosuppressants. ME/CFS - the disease that actually cripples me - appears to be one of weird auto-immunity as well. Whenever their are public health warnings addressed to the aged, parents, and people with medical conditions - that last one is me.


2. I get the ordinary old cold that everyone else gets, magnified several times. You'll be better within a week to ten days, back to normal within a fortnight, three weeks if you're unlucky. I won't be. It's not just the change of seasons for me, it's the whole fucking season.

3. Plus the secondary infections.

4. This whole damn ME/CFS nightmare appears to have been triggered by a cold. Not influenza, not pneumonia, nothing exotic. A cold. So whenever I get one, I really have no idea what will be left of me when it's over. I say it just takes me longer to get back to my normal (if rather depressingly low) baseline, but this is me putting on a brave face (mostly for the comfort of others). I never know that I will actually get back to where I was. You can call this paranoia if you like, but given what life's been like this last (almost) ten years, I think it's quite justified.

5. There is a false egalitarianism going on with this attitude. As well as ignoring the fact of immuno-suppression, the idea that I'm no better or worse off than anyone else, just different ignores objective difference in capacity for action of any kind. Capacity for living normally. Capacity to excercise the same choices and fulfill the same obligations as my healthy peers. My capacity is somewhere down at sea level compared to most people.** This is objective fact. Therefore I have less room to move before I really do find myself drowning.

6. Missing out on one social occasion matters to me far more than it does to most people: I struggle to keep up at the best of times and in general I don't. In general, I'm isolated and as time passes, more so. Every little activity is important to me. I can't make up for it in a week, or two, or three. Time matters in the maintenance of a life, and it doesn't wait for us. Missing out on yet another several months of opportunities to communicate and interact with people - it matters. And it's a cumulative thing. As time goes on it matters more, not less.

7. Staring at the walls and feeling bloody sick for weeks on end doesn't become an okay way to live - just different - ever. The fact that the best I can hope for is to graduate from that to sitting around and feeling sick when I try and do anything remotely normal with my life doesn't make it okay. You might be willing to accept it as my lot in life, I'm not.

8. I'm sure there was more but I'm buggered.

In deference to LJs new emphasis on clean living, I didn't preface or conclude any of these points with "fuck you sideways with a pineapple". If you still need convincing, please insert this comment accordingly.


**Before anyone jumps in with irrelevant platitudes, I do not say this through lack of self esteem, I say this because it's objectively true. How well people use the capacity they've got is a different topic, not relevant here.

The last two days I've been mostly dining on soy milk and sustagen, with small dinners of real food - some chicken and potato, some rice noodle soup with egg and tinned fish. Minimal fibre, very little fat.

( More medical ranting. )

On the plus side, I had a different home carer from usual today so I did my usual brief explanation of CFS, and she got it straight away and said I really didn't need to explain. Although I did mention one or two more things, which she wasn't aware of, but I was impressed that she took the new knowledge on board so quickly.

Basically, she did *not* do that thing that dumbarse people do where you tell them you have x symptom and they say "no you don't because it's not visible to me" (which is why I'm telling you, dickhead) or you say "x symptom incapacitates me" and they say "no it doesn't because I know how you feel", completely ignoring the bit about you saying that it incapacitates you. I've always wondering where such people get off. /rant

Point is, she politely assumed I know my situation better than she does and am a reliable witness to what is going on. I like that in human beings.

(Sorry I said I was going to end the rant and didn't. Oh well.)

Possibly I'm just older and gnarlier and not so simperingly apologetic about my incapacity as I was nine years ago. I've certainly had time to hone and rehearse the educational spiel (and stop being such a woos), but I prefer to think it's the carers who are improving. I doubt it's anything to do with training - carers are rarely trained - I suspect it reflects broader social attitudes. I hope so. Because improved attitudes are the first step towards better support and real money for research.

I've been meaning to post this for a while. It's one man's story about deliberately infesting himself with hookworm in order to see if it would cure his asthma and mishymoocow and I were discussing it when she visited a week or two ago, so here it is.

It's a few minutes reading but he is an engaging writer and it's not the sort of story you read everyday.

( Squicky medical stuff. )

There. Wasn't that rivetting?

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.

Last night we went to a fish'n'chip shop and then to the beach only I had a steak sandwich. I do love eating takeaway while watching the waves, all from the comfort of the car.

I wore boots when we went out last night, had to dust them first. I'm not one for cold days and lack of sunlight but at least I've got some nice footwear. And it feels like the seasons are turning this week so I'm about ready to pull out the Fluffy Boots of Doooooom and put away the summer sandals as my default round-the-house podiatriacal option. tenbears will probably cry, he hates those boots but I think they're great. I only wish I had a high heeled pair so sometimes I could look classy, and then when I was wearing them I could try and crack on to him and he'd end up with post-traumatic stress disorder.

Not that I spend my days devising ways of making his life hell or nothing.

( Medical stuff )

If I could do anything today, what I would do is walk round to one of the local op shops and rummage for crockery. Specifically I would look for the cereal bowls of a size and shape that we like that do not appear to have been made by anyone since about 1983. I've got no reason to think that they'll have any and we aren't short of them, but this morning it occurred to me that it would be cool to go and look. You know, just for the hell of it and all that.



Oh and my new life plan of watching more TV is working out really well. As well as helping to pull my head out of my own arse, it also means I get more crafty stuff done.

Last week I sent a letter to my CFS doctor updating him on my progress. It was quite upbeat.

It bounced.

Twice.

I think the internet was trying to tell me something. I should know by now never to say things are getting better.


~~~

Probably going to be a few days before I get my thingyness** back.

In the meanwhile, fuck it. I'm going to lie around with a pillow on my head wishing to hell this stupid body of mine would let me drink or smoke or speed or trip or something. I need a holiday from this.




**Thingyness: fight, equilibrium, internal locus of control, sense of stability and equanimity and stuff.