invisible chronic illness

I've been busy sending e-mails to various organisations, trying to get more information about whether there are any blood disorder related support groups. I contacted the New Zealand Organisation for Rare Diseases, who suggested that I contact the New Zealand Leukaemia and Blood Foundation. I have also e-mailed the ImmunoDeficiency Foundation of New Zealand. I'm not really holding out for any sort of network, seeing that cyclical neutropenia only occurs in 1 person per million. But to get in contact with someone else in NZ who is similarly affected, would be really beneficial to my state of mind. There are overseas web-based support groups, and that is my plan B.

I have so many questions, but I'm not going back to the hospital for another month, so I don't know who to ask. I guess that's why I would like to talk to someone who knows firsthand what it feels like. I've been reading books on living with chronic illnesses, but they all suggest joining a support group. Not so helpful. The best of the bunch (so far) is a book called Sick and Tired of Feeling Sick and Tired: Living with an Invisible Chronic Illness. It is a relief to read stories of other people who have the day-to-day problems that I face. There are lots of little things, like having to stand up on the bus while elderly/disabled people are given seats by other passengers. Not that I begrudge them this courtesy, and I certainly don't wish a physical disability upon myself. But sometimes it is painful for me to stand around for long periods of time, especially the day after I inject the ol' Neupogen.

I've also found a good website: www.butyoudontlooksick.com. The author of that site has a great story called, "The Spoon Theory" (http://www.butyoudontlooksick.com/the_spoon_theory/). I can relate to this really well, although she suffers from something different (lupus). Jeremy and I have introduced the terminology into our lives, as a sort of monitoring system I guess. He knows what I am talking about when I say, "I'm low on spoons today, so I need you to make dinner tonight." And it works well for us; I guess it's just the same as saying "I am tired/I am exhausted/I can hardly get out of bed", but without sounding so whiny.

Jeremy is away for a few days this week, back in the Bay of Islands. We made lots of food over the weekend so that I would not be tempted to have toast for dinner. I am starting to get used to being home alone at night, but I don't much like it. I never sleep very well.

This week, all my spoons are going towards getting out of bed (often a whole spoon in itself), going to class, coming home, editing manuscripts, proofreading, eating dinner, and making my way to bed. There isn't a lot of room for me to do much else at the moment both because my schedule is full and my energy is low. I guess it's all about prioritising.

graduation day

Here are some of the best photos from our graduation last week. I had a good time, despite the warnings that the ceremony would be boring. The musical interludes were good, and it didn't feel like the certificates were being handed out forever. Maybe that is because I was eagerly awaiting Jeremy's turn to cross the stage; he was near the end as one of the only BMus graduates. I made a total fool of myself by yelling out "WHoooooooo" and clapping almost above my head, and saying (in a voice far too loud) to the graduate next to me, "That's my husband!!" (She just smiled and nodded politely..)

Today's entry was brought to you with a handful of peanuts, eaten in honour of the following quote I saw last week, written on a wall of the cafe:

No man in the world has more courage than the man who can stop after eating one peanut.
(Channing Pollock)

graduation eve

Tomorrow, Jeremy and I are graduating.

I picked up my gown, hood, and trencher last night. I must have chosen a pretty good time, because there were only 3 people in front of me in the line! I tried on the paraphenalia with my brand-new-Stella-Gregg-graduation-dress-kindly-paid-for-by-Mum, and looks good.

The graduation parade was today, but I was relegated to watching from a 6th floor office. I am on work placement this (and next) week, and they had already given me all day off tomorrow; I felt too sheepish to ask for another half day off. But their offices are on the corner of Lambton Quay and Willis Street, so I had a pretty good view of my fellow graduates.. and the Scottish pipe band. Plus, the other factor that went against my parading was that there would have been noone to watch me walk down the streets. Jeremy has been in Auckland this week for a 'professional development' course, and my visiting family don't arrive until tonight. I had (foolishly, it seems) assumed that the parade would take place on the same day as the ceremony, but not so for the Humanities and Social Sciences graduates. Aeroplane tickets were booked, but couldn't be changed once the graduation week programme was sent out. Anyway, I think I just wanted to walk in the parade to get some big bunches of flowers that everyone seems to get given.

Nothing much else to report. The aforementioned work placement is going fantastically; I could really see myself working there. I've been working on heaps of different publications; doing things like proofreading, editing, writing case studies, and being involved in various other tasks. I think I've been really lucky to get such great experience in just four days. Even better, everyone gives good feedback on the work I've done. Not just, "Oh thanks, that's great", but "Thanks for doing that. You've really done well on this bit, but you could have done blah blah blah here, which would make it a bit more readable." Or something like that. I marked up two pages of document and was told my proofreading marks were very clear and logical. High praise for a junior editor!!

I know this is the sort of work I would love to do. Example: Yesterday, I asked of a colleague: "So, Alex. Is the house style to hypenate 'hip hop'?" I mean, how great would it be to have a jobs where you get to discuss words in such delicious detail?! Definitely in my top five. Probably straight after "reading books and getting paid for it."

little boxes

Noodles? check.

Avocados? check.

Sundried tomatoes? check.

The most delicious hummus ever? check.

10 boxes of G-CSF injections? check.

Another visit to the hospital today, this time just to pick up the aforementioned and aforepictured little boxes. Consequently, I've had the song "Little Boxes" by Malvina Reynolds stuck in my head all afternoon:

Little boxes on the hillside,

Little boxes made of tickytacky

Little boxes on the hillside,

little boxes all the same

There's a green one and a pink one

and a blue one and a yellow one

And they're all made out of ticky tacky

and they all look just the same.

***

I recently read a blog by a lady who takes the same medicine I do, who said she pays (per injection) US$200. Someone from Holland said they pay nothing for their medicine because of their health insurance, but otherwise it would cost them €120. (Another patient, from the UK, said that because of the NHS, she gets 42 injections for £6.85.) I work those costs out to be between NZ$300-$350, roughly.

Here in New Zealand, I get all the G-CSF drugs absolutely free. I also get to see the haematologist for free, and free hospital care should I need to be admitted due to infection... the only thing that isn't free is the exorbitant parking prices at the hospital.

Since November 2007, when I started going to the hospital regularly for all these tests, etc, I figure I've racked up a pretty hefty bill.. but I haven't had to pay a cent.

I have always known that I am really lucky to live in New Zealand. This is just one of the reasons.