A close family member (not blood related) has been diagnosed with pancreatic cancer. I am not happy about this at all and I have had lots of cries already - and I heard the news less than 24 hours ago. How can they be finding the technology to make body organs with a 3D printer, and not have a cure for this stupid fucking disease!? Angry. A bit of Soundgarden and System of a Down played very loudly within the confines of my car on my drive home yesterday evening.

This news makes me feel selfish about going to write a blog about me. But I have offered all I can to those affected at the moment, so I guess I better just get on with it, with life. Right? Or wrong? I was instructed by the individual diagnosed not to cry. I will follow his request out of respect for his wishes.

I have been on Gilenya now for about a week and a half., the oral MS DMD (Disease Modifying Drug). My first dose observation was a welcoming anti-climax. Just as I had expected, my blood pressure and heart rate were monitored in the first hour every 15 minutes, then every half hour after, until the 6 hours were up. This was followed by an ECG.

My heart rate when I was waiting to begin the whole thing was at 80 (I was nervous as fuck!). There was a bit of a kerfuffle with getting my previous ECG results approved from my neuro, so I had to wait about half an hour before I took that first pill. And just before I swallowed the yellow and white capsule, I was at 74. My lowest recorded heart rate was 61. Very good news. And my ECG was good also. Then I was released without issue.

So far, I have not had any major issues. I have woken up with back pain since last Sunday morning. Two of those mornings it was not so bad, the others were not so great - they bloody woke me up at 4:30-5am! The Deep Heat has been getting a spread over my back and has probably been making me smell a bit weird. You really can't mask that distinctive scent. Why am I talking about back pain? Because it's on the list of side effects! I don't know why it is a side effect, but I really feel I can attribute the Gilenya to this one - I am just not a sore back person.

The first few days of taking Gilenya, I was manically checking my heart rate using my phone - yes, my phone. An app where you place your finger over the light and you get a result in about 15 seconds. Is it accurate you ask? Well, I believe so. I would use this app after almost every time they'd check my heart rate on my first dose observation in the hospital, and the results were the same if not one or 2 beats off either way. Close enough!

This obsession didn't last long - a few days maybe.

The day before starting Gilenya, I was experiencing some little thumb muscle twitches. I am trying to remember if I have written about my previous annoying thumb twitching episode in my earlier posts??? Back in D-Town I had these episodes over a day or two where my left thumb would randomly decide to twitch. It was very freaky. I could feel it any not control it. I could see it and not make my brain stop it. I could hold it in my right hand and it would still do what it wants - and that my friends is a prime example of how MS affects people. Signals from the brain are unable to be controlled because the myelin, the insulation, is damaged/scarred.

So now it's back. This time, it is happening every fucking day. When I am asleep too, it almost sort of disturbs my sleep. It's annoying. BUT, it is not as 'dramatic' as my previous episodes. It shakes/twitches/vibrates to a lesser scale. I guess the Rebif really wasn't doing it's job.

The positives...are there any? Ha! Of course. NO MORE INJECTIONS!!! Yippee! This is a massive relief. This was affecting me more than I thought it was at the time of doing them. Every second night there was this absolute dread of injecting. Lots of false alarms - put machine on skin...press the button Sascha! No no. Take it off your skin. Big sigh. Thoughts on how much you hate this. Fuck it! Why me? Just do it Sascha, it'll be over in a few seconds. On skin again. Okay this time it's for real. Oh geez, this needle is going 1 cm under your skin. Fuck. I can't do it. Take it off again. Can you just do it later? Tomorrow? No. M can do it? No. I have to do it. More big sighs. On skin. Press button. Needle in. Oh it's not so bad. Oh no, there's the sting. Owww! Hurry up. Needle up back in machine. Phew.

Sorry, I went on a bit there.

So yeah, then the injection was over. All good, right? WRONG. Make way for the flu symptoms...drum roll please...headache, fever, heavy, tired. The fever would be the worst. Once those symptoms actually begin, taking paracetamol does fuck all. So making the decision to take paracetamol before the symptoms came down to 'What's on tomorrow?'. I did not want to take paracetamol 3 times a week! And sometimes I would get no flu symptoms at all! But I got them a lot more often than not.

Still...just over two weeks since my last and final injection, my injection site reactions/bruises are STILL healing. Still! Ha.

Have a great weekend.

Oh and it's MS Awareness month. 'Kiss Goodbye to MS'. Donate if you feel like it. I have a profile still up from last year I think. Sascha is the name. Wear red and raise awareness.

Good. Okay? I'm done.