April 15th 2016: A decision and a compromise (reposted from Facebook)

At the beginning of the year I did some thinking. You know, new year… 40th birthday… and I decided I will not grow old with this disease. That’s definitely an option: with invasive support, meaning a feeding tube and a tracheotomy I could theoretically live with this another 30 to 40 years. Some ALS patients make that choice and if it works for them, that’s great. But I don’t want to live like that. So no invasive stuff for me. This means of course that I will die sooner rather than later (unless I get my miracle…). Not next week but it’s probably safer to think in terms of months rather than years. And I’m ok with that. Don’t get me wrong, I’m really pissed of about having ALS at all. But I have it and it is what it is and I’m ok with the choice I made.
However… I’m not ready to go just yet, and I’d rather have many, many months, and I don’t want to make things unnecessarily difficult for myself and those around me, so I got a port yesterday. That’s also kind of invasive but I’m ok with messing with my veins. I wanted one for three reasons:
1. I’ve been getting IVs for support, mostly vitamin C, glutathione and homeopathic stuff. And my body really wants and needs that but my veins are not having it any more.
2. I can easily be given fluids.
3. I can even be given calories to support me gaining weight again.
So this port should make my life a lot easier. It was a small surgery procedure with a local anaesthetic, unpleasant but ok. The spot is a little sore now but thankfully I have my yummy raspberry-flavored children’s ibuprofen syrup. And later today I’m getting my first high calorie IV. Wish me luck!

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  1. Trauma. Anger. Sadness. | Anja's Little Situation

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