So since my confession last week about my diet some things have improved and others did not. My diabetes went off the tracks big time and my dry/wet mouth issues are compounding. I did manage to feed every night and have gained 5 lbs so that’s good. Food choices were improved by a little bit but the junk food remained but to a lesser degree. I did get myself an air fryer and that has kinda been a game changer. Just made a pork roast and potatoes. I’m looking forward to cooking some yummy meals quickly so that I don’t resort to the quick fix options.

Physically It was a very off week. I needed more oxygen, had some serious jitters, anxiety and just an off feeling. My bloodwork from last week showed that my iron is down and my transplant team has put me on iron supplementation. Normally once a day but I have to take it twice a day. Not sure what that’s all about. It’s been a very unstable week health wise.
Now for my diabetes. It went from really well controlled to a complete nightmare in the matter of days. It is quite alarming for me. I have no idea what has set it off besides the chaos that trikafta can cause. I am trying to adjust my insulin but so far it hasn’t levelled off. High, highs and low, lows. Right now at this moment I feel extremely agitated. There has been no calm for me this week, which is very unusual.

I reached out to clinic to talk about my mouth issues. I really think its not dry mouth because my mouth is watering all the time but to the extreme. I also have a bitter sour taste. I don’t have a clue what is going on. I’ve googled everything it could be. Not one thing can explain it. It’s been all consuming at the moment.
The only highlight of my week is upgrading our trailer to accommodate all our needs. It is an amazing little tiny home and my only refuge from this pandemic. As all the restrictions get dropped in my neck of the world I shall have to stay in my house even longer. I’m starting year 3 of never seeing the inside of a mall, restaurant or movie theatre with no end in sight.



In 5 months I turn 50 and I had planned on having a bash of some kind but day by day I see a huge bash being whittled down to a small socially distanced happy hour. I have a 50’ banner to hang from my house of myself reaching out my hands inviting people to join me. It’s from the fundraising campaign I was a part of in 2004 ish. It’s hysterical. Other than that I have nothing planned. I really want to share it with so many who have supported me along the way. There are many. 50 was a pipe dream. I remember being a teenager and thinking if I live to 40, that that would be a good life. Now I’m entering my next half century and things look optimistic to make it to 60 and maybe 70. I’m not mad about that. I have lots to look forward to just not feeling it this week.
Onto my next week to find some joy and eat some healthy food. Baby steps…
The fabulous fifties! Welcome to the club 😊. I too am not supposed to be here, my LE was five years in 1993😁
Take care and thank you for the inspiration.
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Thank you! Stay awesome.
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