Well another week has come and gone. It was another busy week. I talked to my surgeon on Monday and we have postponed my sinus surgery until mid-march. I am happy with that. On Tuesday the fam and I celebrated my Dad’s 15th year of sobriety. That is just terrific. He was confronted with his drinking that day 15 years ago and stopped that same day. I cannot imagine how hard it was for him. Unbelievable resolve. Needless to say we are all so proud and also thank the non-alcoholic brewing industry. Dad gets to still have a cold one around the campfire.

I started a comprehensive testing of my sugars to get a good picture of my diabetic journey. It was eye opening. I was having 2-3 lows a day. Lows are worse than being high. I was a bit gobsmacked as that means I am taking too much insulin which, in turn, means that my pancreas has decided to participate in my care. So I have lowered my long acting dosage from 8 units to 6 units. I am still dipping below 4 in the middle of the night and I’m not sure what to do to fix that. I have sent my numbers to the CF team. Overall I am pleased but still need to keep a close eye on this. Truthfully, diabetes is quite hard to manage some days.

I also tackled a big challenge in my life. A long standing, almost impossible, challenge. I have always been dehydrated but being on the new drug I am extremely dehydrated. I hate water. I hate drinking it, I hate the taste and find it annoying because it has no nutritional value in my weight gain world. No calories+fill me up=no energy. Well I had to get that out of my head and pivot. I ordered a huge 250ml syringe to allow me to inject this much needed H2O into my abdomen. This has allowed me to easily inject 1 cup of water instead of using the smaller syringes I have with several injections. It literally takes me 30 seconds to do this every hour while I am awake. Now, have I noticed a difference? I can say with 100% certainty that it has. in fact, changed my health. Yesterday was probably one of the best days I have had since starting the new drug. I wasn’t sluggish, I had oodles of energy and the lungs were on point. I also felt clear headed. It was a true revelation for me. I have always told myself that I get enough water in my tea, coke and milk. Which is wrong. So now I am addicted to water, still hate it but love the results of getting it into my body. I can be a butt head sometimes.

I also had a meeting with my transplant team and for now we are just taking a wait and see approach. They are happy for me but I still have severe disease and a transplant will most likely be in my future at some point. I am grateful for the team. Between my CF clinic, transplant clinic, diabetes doc and surgical team, I am in good hands. Nothing will slip through the cracks.

I see so many people talking about being cured and forgetting that they have CF. For the younger generation it is true for some of them. For those of us old folk, a transplant is the only way we will ever get to take a real, deep, long breath like able bodied people. That said I am not in a rush but I do wonder how it would feel to breathe again. To play basketball and volleyball, compete at an elite crossfit level or go for a nice 5km run. It’s a dream.

So that’s my week. I don’t have a particular purpose but I certainly find ways to keep myself entertained. The hours not spent doing all my treatments are quite enjoyable and I look forward to adding more activities into my life as I navigate COVID and improved health. I’ll end this with this question, Did you make someone smile today?

One Comment

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s