Fatigue, weight gain, oh joy!

It’s been ages since I’ve written anything and I feel bad about that. I keep meaning to put hand to keyboard but I wind up getting distracted or just run out of time. As it is, I’m writing this when I should be working. Shhh. Don’t tell my boss.

Currently I’m on Methotrexate injections weekly and Remicade infusions every 8 weeks. Most of my symptoms have settled down and things are almost tolerable.

But I am so tired. Really tired. Sleep 16 hours a day tired. I go to bed at 9pm and I get up at 7am and I feel like I haven’t even slept. I walk around with bloodshot eyes and people look at me constantly and ask if I’m ok. Man, it’s always something with me.

Anybody else had this with either Remicade or Methotrexate?

I’m getting regular B12 and Iron shots so I know it’s not that, and thanks to a concerted effort on my part to eat properly most of my other vitamin and mineral levels are ok.

The other thing that happening at the moment is weight gain. Good Lord, I’m averaging 1 kilo a week and if one more person says to me “You needed to put on some weight though” I’m going to put my boxing classes to use and pummel them senseless. Even my GP said it. What nobody seams to under stand is the weight gain from meds isn’t going to stop, when should I do something about it? After I’ve gained 5kgs? 10kgs? 50kg? Or should I get on to it now? I’ve gained about 8kilos since leaving hospital in February, although most of that has happened in the last 2 months. So I have changed my eating habits and get more exercise. I want to avoid getting fat or that will make me depressed and then we’ll have a whole nother set of problems.

Anybody remember what life was like before we got this disease?

Space age bathroom

Last week I was in the CBD. It was a Wednesday and you know what that means? That's right it's my day off work with no pay where I run round like a chook with it's head cut off seeing doctor's, getting injections etc etc etc. I have a standard 9:30am appointment with my GP for the Methotrexate injection which is good because it forces me to get up and get moving while the day is young. It's also bad because it forces me to get up and get moving when I'd rather stay in bed.

Since I'd recently been stimulated by K-Rudd* I decided to splurge on a box of Haigh's Chocolates. As usual the CBD was packed and busy. I eventually found a park a million miles from where I wanted to go. Of course the moment I parked the car I realised I had to go to the toilet. LIKE RIGHT NOW. There was one of those space age, fully automatic, self cleaning restrooms (yes I said self cleaning - They actually exist, go figure. Although a home version doesn't as yet). But whatever, a bathroom is a bathroom so in I went.

As soon as the door closed and locked behind me, I threw my bag and coat up on the hook on the wall and raced over to the loo, dropping my pants as I did so. Sat on the loo I breathed a huge sigh of relief. That was a close call. It was then that I became aware of a soothing male voice which was coming through a speaker in the wall.

"Welcome" The voice said. "You have 10 minutes to use this facility. After this time the door will open and the self cleaning process will begin" Huh.... wait... what? Did you say 10 minutes? That's a lot of pressure for a Crohnie, I'm not sure I can meet those expectations. All of a sudden I felt quite uneasy. The door opened out facing the road at a set of traffic lights.

I was quite sure that in 9 minutes some poor unsuspecting driver is going to get an eyeful of me, on the throne, pants around my ankles, panic-stricken look on my face. I was also quite sure that said driver would have a camera phone handy and would have more than enough time to pull it out. I could see the youtube video as clearly in my mind.

Well, just as you can't hurry love, you can't hurry this particular activity either. I looked around for the toilet paper and at first I couldn't see it anywhere. I always carry some in my bag so I wasn't to concerned. It was about this time that I noticed the signs that were all over the bathroom.

Too bad if you don't speak English. I hit the button for the TP and it came....out....really.....slow.....ly. "Come on you stupid thing." I urged, "Don't you know I'm on a time limit." When it did finally come out, I realised with dismay that it wasn't nearly enough and I'd have to do it again. For the rest of the time I was in there I had one eye on the light, waiting for it to start flashing. When I was done I went over to the magic sink and sure enough as soon as I placed my hands under it, the toilet flushed. the soap and water came out. Again not enough, I had to do it twice more.

As I pushed the button to open the door, the same male voice thanked me, and wished me a good day. I found myself actually saying out loud "Thanks, you too." Luckily no-one was around to hear me talking to an automated toilet.

A few days later I was relaying this story to a friend who far from being amused actually looked like she was in pain. When I asked her if she was ok, she informed me that she too had used one of these new toilets, but she had not made it out in time.

Apparently her mobile had rung as she went in. She chatted away for 5 or so minutes, completely unaware that time was ticking. She hung up used the facility and as she was washing her hands became aware of a beeping noise but dismissed it. The door opened and she fluffed about in the mirror, fixing her hair etc when suddenly the door closed and water spewed forth from every direction. She frantically pushed the button to open the door but it remained firmly shut. Shortly after the water stopped and where before there had been water, now there was air. She likened it to being inside a giant hair dryer. The door eventually opened and she emerged, soaking wet, hair a frizzy mess, vowing never to set foot inside one of those ever again.

*Our Prime Minister Kevin Rudd decided to give everybody $900 to spend to help stimulate the economy. Being the responsible citizen that I am, I did my civic duty and spent mine on a KitchenAid Stand Mixer in Cobalt Blue, Haigh's Chocolates, three books from Borders and various DVD's from JB Hifi :-)

Commencing Humira

I think I've been on almost every medication approved (and some not approved) for Crohn's Disease at one point or another. I wrote this in 2007 when I started Humira (adalimumab) for the first time.

Humira, a new hope?

My doc decided that Humira was a better option then Remicade because we only get one shot at remicade. Also, I can give it to myself, rather having to have infusions at St V's. So he sent me away saying that the research Nurse would contact me in two or three days.

I went home and waited.

and waited.

and waited some more.

Four and a half weeks later I finally got a call and I headed off to St V's where the nurse began to explain all the potential side effects and benefits of Humira. I should mention that the information leaflet inside the pack is HUGE. It's this double sided A3 sheet with 6 point font writing. It's the encyclopedia of Humira.

She then calmly informed me that I would be receiving not one but FOUR injections and that I would be giving three of them to myself. Then she took them out of the box and laid them out in front of me.

"Yikes! I don't think I can do this" I thought feeling queasy all of a sudden.

I had tried to find a copy of the instructional DVD on youtube to save me explaining it all but the best I could find was the one imbedded on the humira website which you can watch here

So she did the first one while I watched. Wipe skin with an alcohol swab. Pinch the skin. Hold the syringe like a dart. Stab it in. Plunge slowly. Pull it out. Throw it in the sharps container.

Then it was my turn. She talked me through it. Wipe skin with an alcohol swab. Pinch the skin. Hold the syringe like a dart. and then I hesitated. This was the hard part. I took a deep breath and...hesitated again. The nurse laughed, "The first one's the hardest". I sat there looking at my pale skin and the sharp needle. Maybe I really couldn't do this. I felt the queasiness returning. It had to be done. There was no other option. I counted to three and it was done. It was in. I continued following her instructions. Plunge slowly. Pull it out. Throw it in the sharps container.

It actually turned out to be no where near as bad as I thought it would be. Under the watchful eye of the nurse I managed to plunge a 20mm piece of steel under my skin and inject myself not just once but three times. She warned me that it would hurt, that the skin might swell up and that I might have flu like symptoms for two or three days afterwards, none of which happened, thankfully. Although I did have a killer headache the day afterwards.

So today I had to give myself the injections at home. On my own. With no help. I psyched myself up, got out my sharps container, alcohol swabs, cotton balls. I washed my hands thoroughly and was ready to roll. It was at this point I realised I hadn't taken the syringes out of the fridge yet. The nurse's words or warning echoed in my ear "It'll hurt a lot if the Humira is cold".

So I waited fifteen minutes and then decided it was now or never. The first one stung. I think I plunged it too fast and the Humira was still a bit cold. I made a point of plunging the second one much slower and it didn't hurt at all.

I have the next dose in two weeks time. From then on it's just one dose every fortnight. It's probably still to early in the show to know if it's helping at all. I feel better but it could be pure determination. I really want this to work.