Let me tell you about Acetazolamide.
So I start taking it 12 hours before my Trex. Pills every 6 hours from midnight the Monday night just before I start. It protects me against Trex toxicity. Great. Love that. I’m onboard.But you know what the trade off is?
Pins and needles.
In my face.
And knee caps.
Ok so you can move your knee caps around and usually dispell it. Balls of feet too. Feels hilarious but manageable. But you can’t really move around the bits of your cheek and nose. It is disconcerting. And hilarious. And off putting. Mostly hilarious. But also so weird. Thankfully the Acetazolamide only lasts for 48 hours. But by that time you’re pretty happy to see it gone.
The last two weeks I’ve had some problems with my pumps being super sensitive. I mean I’m glad that there is an alarm to tell me if there is air in my line. But it doesn’t need to do it 3-4 times a week as it has been doing the last two. Prior to this stint it had only ever happened once. One of the times the alarm went off this week I had to take myself over the the main hospital tower at 9:30pm to get them to fix it. I had to leave the boys at the pub watching the football while I wandered over to level 16. The next day in Ambicare they just gave me a new pump as they had the week before and no problems arose after that.
At least I’ve had a shorter trip back to Ambicare each time now that I’m back at my beloved Cotton Rooms. And we were able to cook in the oven and eat our delicious takeaway Ramen in the dining room (which we have affectionately named the Cottonstaurant). Makes such a difference being back here. And omg I can have baths every day. I am in heaven!!!
Anyway I just got my all clear from blood test this afternoon and I am on my way home for the weekend! Back again next week for the mean drugs.
But guess what. Can you believe I’m now ONE THIRD of the way through my cycles??? Amazing. Not even a challenge!