I want to take a moment and say thank you.

I am so happy to be back at work. I am so happy to see my friends are okay. I am so happy to be doing what I have been trained to do for the last 17 years. My body is probably in a little bit of shock – but feels good to be back. It is probably trying to process.

There are times when I have to step out of life – some of it is reasonable and some seem less so. I don’t know if I ever told you, I am starting to forget it is terrible. Since my mom, parents were fearful, petrified of me not taking my enzymes correctly in school, I had lunch with the school nurse for 1st, 2nd, and 3rd grade. Until I really, really wanted to eat with my friends.

A friend of mine kept asking me why I had to eat with the school nurse and I would explain and she just looked at me like she didn’t quite understand. Looking back, I may have had a crush on her.

I tried to get the courage to ask my mom, but I remember my days were running out as the end of the school year was approaching, and as I remember she had not been in an approachable mood for a few days. Good, bad, and the other, I decided I will write a note myself. I did. I remember trying to mirror my mom’s signature to the best of my ability. I was nine at the time.

I brought it to the school nurse. She called my mom. I got grounded. It was awesome.

But the next year – I got to eat with my friends. Not that year, but at least the next. Finally.

Actually, a friend of mine after finding out this little story, said, “That’s what happened to you.” She laughed in good nature. She said, “You were taken out of those formative social years.”

Another friend has said, or two friends, that sometimes I may have slight autistic characteristics. It’s very possible. Who knows really? I am not ruling it out. Oh well, what can you do? Laugh and move on.

But you know – I prefer to step into life. I don’t like stepping out. It is just so much better.

I prefer to gather and have wonderful conversations.

I am also very happy for my health. I am so happy and grateful that Trikafta came into play right before this contagion. I am so happy that I can continue to take Trikata.

About 2-3 weeks ago, I ventured to get my labs done. I was getting pressure from MN and from here to see how my liver is handling the drug. I am supposed to get my liver checked every 3-months for a bit. It had been 6 months.  I am thankful my liver keeps chugging like it does and I can continue to take it.

I also found out I am a bit anemic. I guess I have had this issue in the past here and there, but this time it was more apparent. I have had four conversations about my need to get iron from different providers. Got my iron. Apparently, being anemic can affect my breathing. Who knew?

I learn something every day, I am telling you.

I have also learned from my endocrinologist who has tracked me down, that there has never been a study in regards to CF patients and diet changes to regulate their sugars. The emphasis has always been on weight and consequently, insulin. I understand in some CFers are not well at times and nutrition is not something they want to constrict or alter, but never in the last 20 years?

I think personally since Trikafta, I can handle my sugars better. But I do still crash. I crashed twice last week and it seems even though my AIC is perfect, my sugars are great really; as I have been testing them more – I don’t have enough reserves to make it through the night.

So without a doubt, I have to eat a protein-based snack 30-60 minutes before bed. I did that for those two nights but depending on activity level, food, metabolism – life, my body is going, it changes how it processes.

My PSA to you: if anyone ever tells you that you are pre-diabetic, fix it. I know the negotiation daily is tough. I personally think being diabetic is systematically equally difficult at times as CF.

Many, many wonderful things to be thankful.

One more thing I would like to touch on, I haven’t addressed COVID at all. Mostly because I am searching for more data. However, there is little data out there.

Per the Journal of Cystic Fibrosis, relatively CF patients who have contracted COVID have done fairly well overall. The latest information is from April 29, as I can’t find anything more recent. Link below.

It is a very small group of CF patients in the entire world. Only 40 have tested positive, 25 in the US alone.

“To date, the incidence of SARS-CoV-2 amongst the CF population (0.07%) appears to be lower than the average derived on April 13 from the general population of participating counties (0.15%).”

They believe it is because CF patients adopted protective measures earlier and the population’s strict adherence to social distancing, hand washing, and other infection control measures.

My doctor said to me, it’s unlikely that a person will contact COVID face-to-face with another person – if people are wearing their masks, social distancing, etc. She said, “You have to know where your hands are at all times.” She suggested keeping a small hand sanitizer on my body just in case I am in a place where the sink or sanitizer is just out of reach.

Everyday data changes.
We have to pay attention to the data.
We also have to be thankful for today.

On that note, I really want to share bits of things I learn here and there. I have just learned some very fascinating information in this new book I got. I may add a separate section at the end of my blogs to write about and share new things I have learned that may not at all be related to health or anything. Just interesting things, and because I purely want to share. I haven’t decided what to call it or to break it from the blog, or may be a separate blog altogether, meaning separate blog page, but it will be more defined to “Oh hey, this is something new in the world that I may be interested in.

Tiny blip: I had a gentleman today who does construction on homes. And when finished, in his way of saying thank you for the work; thank you to the homeowners, he plants a small bed of flowers for them. Does it on his own, no direction, just his way of saying thank you.

Thank you for reading. Thank you for today. Thank you for you. Much love and please be well.

https://www.cff.org/About-Us/Media-Center/Press-Releases/International-Study-Reports-COVID-19-Outcomes-in-People-With-Cystic-Fibrosis/

https://www.sciencedirect.com/science/article/pii/S1569199320301259

Postscript: something happened to my link last time. I don’t know what. Fixed I believe.