It’s a good thing I’ve not got heart problems…

Every two weeks I inject myself with a very expensive medication that is a big part of the reason why I’m currently in remission from ulcerative colitis. It’s very, very expensive but I have an excellent drug plan through my job (I should do, I work for the insurance company that provides my drug plan!) so all my life sustaining medications have a simple $10 copay for each refill. My plan covers everything else. As all my colitis meds are life-sustaining, it works out nicely for my insanely expensive medication.

Except today when I went to pick up the pen for tomorrow’s injection, the charge was $155.


It was an error, thankfully, that I’m not going to query too closely and it took my lovely pharm techs a while to work out what had happened.

However, it did give me rather a heart attack and I was shaky for a while afterwards. That is a lot of money to find each month for meds that I can’t just stop taking or reduce the frequency I take them. Ouch.

2011: A very, very brief review

Everyone’s doing it, so I’ll join the bandwagon.

2011 basically sucked for me. I won’t lie. Any year that has an emergency hospital admission in the first month and the diagnosis of a severe chronic illness is never going to go well. I’ve spent most of the year on steroids and now take a ton of pills and injections to keep things at bay.

While the UC diagnosis did at least finally give me access to lots of help and doctors who are eager (and wonderful) carers for me, it did also make my life a bit more complicated and I ended up cancelling most of the trips and fun plans for the year due to flare-ups. When you add in all the things that I couldn’t do due to my back, you end up with a year that did not have many trips or fun days out and consisted of a lot of hospital trips, tests, needles and bad news.

Thankfully the last six weeks has been better: I’m in remission (I hope, we need to discuss the recent stomach cramps in the new year) and my back has eased off a lot since late November.

I’ve written a bit during December, for the first time in months, and my Christmas has been so much better than last Christmas.

All of this gives me hope that 2012 is going to be a lot better than 2011. So here’s to the end of a sucky year and the start of what will hopefully be a fantastic year!

Er, why is it December already?

(This post was very witty. But WordPress ate everything except the first sentence and I had to re-write it. I forgot most of the jokes. Argh)

Normally I’d title this one “I aten’t dead (still)”, but I suspect that I’ve used that title too often…

I’m not, though. Dead, I mean.

It’s been a weird year, largely featuring my battle to get the colitis into remission, which has involved several rounds of steroids and a variety of increasingly powerful drugs. Thankfully we’ve finally got there and I’m now on some lovely strong immune suppressors (plus a couple of other things) and the steroids stopped three months ago.

Unfortunately the stopping of the steroids meant the return of the back pain. That is being investigated. Ugh.

Still, looking at how ill I felt this time last year, I think that I’ve still made progress. At least I’m able to eat normally again and retain my food, which I think we can all agree is an important thing. I’m slimmer than I was, but at least I’m here ๐Ÿ™‚

What else have I been up to? Not a lot. The big trip that I’d planned in September had to be cancelled due to another flare so much of the last few months has been pretty quiet.

I’ve read lots of books, become a (bigger) TV addict (thank you, Netflix in my Wii, DVD manufacturers and my new iPad with BBC Global iPlayer) and achieved very little knitting. Professionally has been better: despite all the illness, doctor/hospital visits, tests and drugs, I managed to get promoted at work and we successfully released a big bit of software last month. Not too shabby, I think.

So, why have I finally dusted this thing off? Well, it’s easy – books!

And maybe, TV!

As I am pretty terrible about updating on things like what I’m doing and how my life is, why don’t I fill in the gaps with book nattering? My page for this year’s books is here and I’ll be setting up something for 2012 soon.

Also, I’m doing a book challenge next year so I need to get myself signed up and a thread started for that. So much reading to do!

Good thing reading is my first big love ๐Ÿ™‚

Oh, right, I’m supposed to update this thing sometimes…

I’ve been rather quiet on this blog lately. I’m not quite sure why, although I think it’s got a lot do with being tired and a bit overwhelmed and therefore not having things to post that aren’t medical and health related.

My trip to England was lovely and the convention was fantastic. It returned me refreshed, renewed and enthusastic for all the things that I’d been not doing or thinking about while I was sick. I read some excellent, amazing books (I’m on a good book roll right now) and was feeling thoroughly ready to tackle the world again.

Then I got the news from my specialist that my colitis was not in remission and seemed to be prednisone dependent. As my symptoms (the bleeding most noticably) had returned when we tried to taper down the pred, I had to concurr. This meant that our plan to taper off the pred and introduce a nice, cheap, easy-on-the body maintenance drug was not going to work. Yup, pretty devestating news. I’m now waiting to hear whether my insurance company will fund an insanely expensive biological immuno-suppressant called Humira, which has the advantage of kicking in fairly quickly, or whether I’ll have to use the cheaper, non-biological drug azathioprine, which takes several months to reach theraputic levels. In the meantime, we’ve bumped the prednisone back to high levels and I’m dealing with the side-effects (acne, gastric reflux, yay) while also dealing with the anemia from my heamoglobin dropping due to bleeding.

Mostly, this has involved insane levels of exhaustion and me turning into a crazy person obssessed with everything I eat in case that’s the thing that’s killing me and OMG what am I doing to myself?

My specialist keeps reassuring me that this is nothing I’ve done to myself, this is not my fault, and I could be not eating anything at all and I’d still have active colitis. My disease is severe and extensive, but it’s not something that I can fix by diet or by not eating or by turning into a crazy obssessed lunatic.

He may not have come out and said the bit about being a crazy obssessed lunatic. He’s far too nice for that. But it was certainly something he would have said if he wasn’t so lovely.

On Friday, I had a slight existential crisis in the middle of the grocery store. I was exhausted, to the state of being a burnt out zombie, and the exhaustion had been doing funny things to my brain all day. I was depressed, feeling rather desparing and defeated, and it all seemed to fall on me in the middle of the grocery store.


A slightly dramatic few weeks

So, when I last wrote on this blog it was the day after seeing the duty doctor at my medical practice and I was feeling really rough. Her prescription of peppermint tea was not helping and I was starting to get very dizzy with flashing lights and sudden unexpected naps. I had been putting all of this down to my ‘stomach bug’ and was planning to get my fasting bloodwork done the next day. There is a reason that there has been no update since – and it’s a little dramatic.

On the day of my bloodwork (January 26th) I was feeling so tired, dizzy and breathless that I could barely stand long enough to dry my hair. It took me forty minutes to achieve that and I realised then that something might be wrong. My lovely cousin was a star and took me out to get my blood done, despite having only just finished a night shift, because I knew that I wasn’t safe to drive. Afterwards I went home and worked, reclining on the sofa a lot, because I am slightly crazy and still couldn’t quite believe that I was actually ill.

A few hours later I got a call from my doctor’s office. My haemoglobin was dangerously low and I needed to get myself to the ER immediately. I called Mum to cancel our Wednesday night Skype chat, called my cousin for a lift and checked myself into the ER.

The nurses who treated me that night told me they had never had a patient my age, with those results, able to walk into the ER. I should not have been conscious, never mind ambulatory, and if I had passed out at home my blood levels were so low that I would have been dead in a day or two. The tummy symptoms that the doctor had dismissed a couple of days before were actually symptoms of a large GI bleed and I was dying. The only reason that I hadn’t passed out was because I had lost a lot the blood gradually over several months (apart from the big loss in the final week) and so I had acclimated as my levels dropped. Thankfully the ER staff were able to pump me full of blood and saline (when they found viable veins!) and after twenty hours I was released on condition that I went straight to see a GI specialist that they had found for me.

He examined me, said that it was unlikely that I had IBS, and got me started on tests to figure out the real problem.

By the time I got home that day, my Mum had booked tickets and was due to fly in a couple of days later to look after me. I felt so much better thanks to all the transfusions that I couldn’t really understand why everyone was so worried, although when my tummy troubles returned at super-strength a day later it was lovely to have Mum around to look after me.