Acetazolamide, alarms and ONE THIRD THROUGH, BABY!!!

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.



Kneeeeee caaaaps 


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!

15 Comments Add yours

  1. Kathy says:

    You’re doing so well jen always so positive and happy hope you have a great weekend much love xxxxxx

    Liked by 1 person

  2. Jane Doherty says:

    One third through is fantastic Jen. All that positivity is helping. I’m so glad you built your iron up yourself. Well done

    Liked by 1 person

    1. Jen Eve says:

      I’m surprised I’m already a third through!! It’s going so quick!
      And I’m also rather glad I managed to hold off the blood transfusion with some good old iron tablets! The strange thing is that the doctors were all surprised how I managed to get my iron levels back up… So odd!


  3. John Kirby says:

    Hi Jen, I enjoyed reading your last three blogs. I am amazed at how you manage to maintain a wonderful sense of curiosity about all your treatments, and take it all with a great deal, of good humour. You are an example to us all, in how to handle adversity. Now , one third all done, and working towards the halfway mark. Go well. Hope you enjoy the Grand Prix this weekend. Love to you both, John

    Liked by 1 person

    1. Jen Eve says:

      I’m so glad you’ve been enjoying them. I am forever curious, there is so much to learn!
      We enjoyed watching the race very much!!
      Hope you’re getting some walks in whenever the sun is out!!


  4. Andrew Taylor says:

    Go Jen. It’ll be half way through by the time we meet up in December. Going so well, look after yourself, keep up the good work.

    Love to you both.

    Liked by 1 person

    1. Jen Eve says:

      It’s going so quick!


  5. Jenny says:

    Fantastic that all is going well! Love reading all about it!

    Looking forward to seeing you soon. Have a great weekend.

    Liked by 1 person

  6. Pins & needles., frustrating & irritating on top of all the other stuff you had going on.

    I had that all over my body, they call it Nueropathy.


    1. Jen Eve says:

      Ugh I feel for you. I’ve got neuropathy so bad now I can hardly use my hands. My feet trip all the time and at night time the sheets feel like someone is stabbing my feet with knives. Not to mention the pain the rest of the time… 😔

      Liked by 1 person

      1. Holy Cats!!! You got it bad. You have all my empathy, you’re sure getting your fair share of troubles.

        Mine felt like a small metal rake was slowly being dragged down my body, hellish, but there was enough other pain to keep me occupied.

        I had straight up Morphine but also Ativan & Valium.


      2. Jen Eve says:

        Ugh not nice is it! I have no pain killers but they say nothing helps neuropathy. They also say it can last for up to two years 😭 and mine is still getting worse.

        Liked by 1 person

      3. So no pain meds in general? My meds weren’t for the Neuropathy, just for all the other sh$t going on, but the Ativan did help.

        The Ativan was a relaxant, not a pain killer, it made me not care.

        For the Neuropathy I just had to lie there and let it happen. LOL, and let everything else happen too, not like I could do anything else.
        *big eye roll*


      4. Jen Eve says:

        Ah interesting. I have paracetamol only. Lol lucky me.
        Yep the concept of sitting and letting things happen does not fit well with me. But it’s all we can do

        Liked by 1 person

      5. Is that all your need or allowed to have? Do you have anything stronger available to you?
        Well I guess you can always pop down to the pub!

        Heh Heh, well yeah, I had no choice but to let it all happen to me. Also, unfortunately, the world did not stop while I was laid up, so it was a real culture shock trying to get back to Real Life


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