Becoming Complacent

In a recent conversation with a woman I am just getting to know I mentioned in passing that I had this transfusion thing next week and wouldn't be able to do anything on that day. She looked horrified, then deeply concerned as I explained what it was and how it worked. I realised that going into hospital every 8 weeks for a transfusion is not normal to most people.

This woman patted me on the hand by way of offering support? condolences? sympathy? and stated that needles were horrible and she couldn't imagine anything worse than having to have one stuck in your arm for a whole day every two months. Then she actually shuddered at the thought.

I see it a bit differently.

Not too long ago I was about as sick as I’ve ever been. I remember telephoning my specialist every day in tears, begging him to admit me (which he did after five days). The surgery I'd had a year earlier had made things worse instead of better. I was in more pain than I ever though possible and could not go more than 20 minutes without needing a toilet including having to get up 6 or 7 times a night. 

After two days of observation, the doctors were all in agreement. Medication wouldn’t work. There were too many ulcers, fissures and strictures and they were too widespread to operate. The only solution: Colostomy bag.

I cried for a week. I pleaded. Anything, absolutely anything but THAT. 

Eventually after three weeks in hospital on high doses of steroids, daily injections, humiliating and excruciating enemas, a couple of strictoplasty procedures and a whole lot of begging on my behalf, they decided to try Infliximab. They weren’t really convinced it would work since none of the other similar class drugs had worked. I guess they just took pity on the poor sad creature who was desperately clutching at straws.

“There’s every reason to believe this will work.” I must have uttered that phrase 60 times a day to everyone who would listen, oblivious to the doubtful looks and words of caution about getting my hopes up. It was too late for that, they were already way the hell up there, it was going to work. It just had to. And work it did. Infliximab seemed to work from the first transfusion. Sometimes I wonder if will power and pure determination is enough to make medications do their thing.

Fast forward to today and I am probably as close to remission as I'll ever get. There's been no talk of colostomy bags or surgery. So to me, these transfusions are far from something horrible or a reminder that I have an illness. Infliximab saved my life and I am very lucky to have these transfusions every 8 weeks.

Every time I have the transfusion I’m reminded of where I was and how far I’ve come. I’m reminded of how bad things have been and that they can easily be that bad again and I’m thankful that, in this moment, I’m healthy. It reminds me that I am alive and well and that things are good and I come away from it feeling revitalised. 

Why are we waiting...

So I arrived for my Infliximab at 9am this morning and as I was heading towards the elevator, my mobile rings. It's the co-ordinator (and I use that term loosely) of the transfusion floor telling me they've lost my prescription and so don't come in." Um... too late my friend, I'm already here.

I'm now sitting in the cafe where there's internet access, very patiently waiting for them to sort out getting hold of my prescription so I can get my Infliximab. He said it could take up to an hour. I scoffed, pffft, yeah right! You usually have me waiting at least that long when you have the stuff. He flinched at that and I suddenly felt bad. Sometimes I snap first and think later.

Anyway. It's been an hour. I'm still waiting. So much for having an early transfusion and having the rest of the day to myself. I have a feeling I'm going to be here all day.

Stay tuned!

Update ***

At about 11am I got a phone call from my specialist who apologetically informed me that the research nurse (I'm sure I've blogged about her before, she's the worlds most incompetent person, she constantly messed up my Humira prescriptions when I was on that and single handedly caused me to be SIX weeks without medication) up and left on Friday, giving 3 days notice, and leaving everything up in the air. They can't find my paper work, symptom diary, blood results and so medicare will not release the medication. He asked me where I was and upon discovering that I was just downstairs he came down to see me. He has to have seen me within 10 days of writing the prescription it seems. Freebie!

Long story short, I can't have the Infliximab today. We completed all the necessary paperwork again and he assures me it'll be fine to go in a couple of days. Unfortunately, my only availability is on a Wednesday and next week I have the dentist scheduled, there is no way I'm going to delay getting it for two weeks. I guess I'll just have to wait and see what happens.

It's so unbelievably bloody frustrating.

Swine Flu Come Pnuemonia

Well somewhere around Friday or Saturday of two weeks ago I caught the dreaded Swine Flu. Monday I was feeling pretty drained but otherwise ok. Tuesday my throat started to get sore and by Wednesday I new I was getting the flu. 

I woke up on Thursday feeling as though I'd been hit by a truck. Headache, muscle soreness, sore throat, coughing, blocked nose and a fever. I called in sick, took two Mersyndol and went back to sleep. I felt pretty miserable on Friday too. 

Feeling guilty about the amount of time I have off work, on Monday I got up, took some panadol, cough syrup, and went in to work regardless. It turned out to be the worst thing I could've done. The next day I felt worse than ever and again called in sick. 

I called the hospital to inform them that I was sick and they promptly cancelled my Remicade infusion. I was told to call back once I was feeling better. 

I went to the doctor on Wednesday who informed me that my Swine flu was now pneumonia and that I was not to go to work, or indeed get out of bed for the rest of the week. 

Sigh.

So here i am, still feeling awful, I've been off work for a week and a half now with little sign of improvement. I'm worried about delaying my remicade, since every-time I have even the shortest break from medication my Crohn's goes into hyper-drive and I wind up needing to be admitted into hospital. 

Hopefully I'll start feeling better in the next few days. I need chocolate cake. Stat!

xox

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?