Food and Dancing (what a busy day!)

Food and Dancing (what a busy day!)

On every Saturday morning for the last year and a half I deliver mobile meals to people in the community. I really love doing it, the people I deliver to are amazing! Today, one of the older men I deliver to gave me a picture that he cut out of the paper. It was of my cousins (twins) holding their soccer team's trophy.

Then I had play practice (its a hour drive there, and an hour back) so that takes up a chunk of the day, but since the play is Hairspray, I decided it is more than worth a couple hours in the car.

It had been 5 years since I had been to our local Mexican Restaurant Los Ranchitos and I'm not sure why. However, I loved it! The food was great, the price was decent, service was good, and overall a fun time! It was really busy, good thing they added on a while back!

I ate quite a bit today, but that is good, since the pharmacy hasn't sent me more stomach feeding bags. Tonight will be my third night without any feeding. I have lost 2 pounds I'm pretty sure because of it..

I got my Vitamin D retested, but results aren't in yet. I will keep you posted!

Today's BIG Appointment

I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...

Video Blog: Life in the hospital (as a child)

The daily life in the hospital! Most people cringe at the idea of a hospital. However, when I was little I never minded going into the hospital. I usually would have at least one other friend with Cystic Fibrosis to hang out with there (before we knew about the "CF Bugs"). I didn't love being sick, but I loved my CF friends that I would hang out with. Also the hospital, nurses, and my parent's tried to make it a "normal" environment. I got up and put on cute clothes, "walked to school", flirted with a couple CF boys, did homework, came "home" (back to my room), my friends would ask my parent if I could go play with them. We'd hang out in the play room or go on a walk with one of my parents! My dad loved taking me on walks and I LOVED going on our walks! Here is a video blog of the route we took and bit of information on what is was like growing up (for a chunks at a time) in the hospital! (it is posted via youtube, let is dow...

Orkambi & the Hospital

I haven't really felt up to blogging or doing anything since I got sick. I have been having a few breathing problems and more asthma attacks the last two weeks. I had my regular Cystic Fibrosis Clinic check up on Tuesday of last week. I knew it wouldn't be great, but I had no idea how bad it really was... At clinic we found out my lung function dropped majorly from my "baseline" of 58% to around 38%. My Respiratory therapist responded "Dang, that's transplant range, we gotta get those numbers up." It's scary to think one sickness, one medication and my lung function can go from 58% to 30s. Where I struggle to breathe and could be listed for a transplant. But I have faith, hope, and trust. This is why. My doctor(s) at the CF Center are very proactive! My doctor told me I had a couple options: 1. be admitted 2. Stop Orkambi 3. Keep doing Orkambi, but switch up some of my meds at home and call in a few days for update Of course... I decided...

Cheriz: My life with Cystic Fibrosis

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