Friday, February 17, 2017

Exercise is VITAL to my HEALTH!


One big promise I have struggled with in past, present, and probably future is to EXERCISE!

I know a lot of people struggle with the same problem, regardless is they have CF. We are too good at making excuses for ourselves. I don't have time, I don't feel good, I will start next week. I was on the right track in 2012. I was doing musicals, where I was singing or dancing every night. AND I was coming home to walk or jog almost 5x a week! I started slow and added more distance as I could. I would walk 2x a week with a friend. This is where I focused on distance & length, not speed. Then on the opposite nights, I would jog as much as I could, walk catch breath, and repeat.

I had more muscle, was eating more, gaining weight, and my lung function was the highest it had ever been! 60 - 64% <--- WOW! I was single, didn't have a TV (on purpose) and kept myself accountable through my blog & friend (w CF) Laura.

Since then a lot has changed. Living with another person changes your routine. Sharing schedules, finding time to spend together, balancing my job, his two jobs, our budgeting/bills, cleaning/yard work, plus I'm very involved in 4 organizations right now (and have taken a larger role in volunteering with CF Foundation). I no longer live in a community where I know anyone to walk with, and my friend Laura passed away in 2014. I  just kept telling  myself I didn't have time to work out. I didn't have time to worrying about it.

My Orkambi is FINALLY adjusting. I have been gaining weight slowly without trying. Mostly, my appetite lately has been huge! Gaining weight helps a lot! After putting on weight I have more energy, so I can do more (Orkambi helps with this too).

So this last few weeks I have been trying to find ways to work out. I have handheld weights and ankles strap weights I can use. I'd like to start jogging again (even if it is hard on my joints), I feel accomplished when I finish a 5K. However, I decided to find something more fun and less harsh on my joints! Our local community ceter offers a PiYo class! I have done some yoga before, but those classes were always really long and to be honset, I got bored. I get distracted easy. (Have you ever driven with me. lol) But, PiYo has the muscle-sculpting, core benefits of yoga and pilates. I find it more entertaining, because it is faster paced than regular yoga, it feels like aerobics.  It's a $5 class for 30 minutes, which is the perfect amount of time for me. Any longer and I wouldn't able to finish the class.

Andrew went with me to the class last night, he enjoyed it and would do it again with me (if he gets another night off). I'm not sore really either today, we both were after class though. Our TV streams YouTube, so we can always pull out my mat & do a session at home too!

I'm going to keep doing these classes 2x a week and see what else I can slowly add into my routine. Going to an actual class with force me to try harder. We are also trying to get one our our TV's hooked up in the basement for my treadmill. Walking on a treadmill staring at cinder block is not very interesting. LOL. (Picture right: I had to use my computer to play DVDs while walking in the past)

FitBit users: Add me! I have a FitBit account (Cheriz)!

I'd like to do weightlifting too, but this is a good start. I don't want to add to much, overload and then quit. So baby steps! Hoping to see a difference in my Clinic numbers on the 28th!!


Any tips or things you love doing to work out! Ways to help me stay on track? Thanks!

Saturday, February 11, 2017

Happy 5th Birthday to my Blog

5 years ago I decided to start blogging about my life. I wanted to take a more active role in the CF community, share my story with others, hear others' stories, and fundraise more effectively.

I believe I have accomplished all this and more! I can't wait to see what more the future has in store.

There were many topics I could have blogged about today, but I decided for a such a big occasion that I should talk about one of the biggest decisions I ever made.

Getting my stomach tube!!! Also it (apparently FB says) is "Feeding Tube appreciation week"

Let me take you back to when I was in 6th grade. (time travel music insert here). I weighed 45 lbs around 4'8 ft tall and ran out of energy so often, I'd stay in during recess or breaks to eat extra food and drink ensure. I struggled keeping up with my friends on Halloween, didn't have enough energy to even play sports. I struggled a lot, but I kept on pushing. Thanks largely to my family, friends, and care center.  Doctor C ( LOVE him) told us about the option of getting a stomach tube in the summer of 1997 (just before 7th grade was about to start). He said it could really help me gain weight and reach my age/health goals. My parents thought it sounded like a great idea, but they always firmly believed in letting me have a say in my health ( I usually always obeyed anyway). Dr. C and parents told me how much it could help. They also told me it was a surgery and I would miss a good chunk of school. For the first few months I had to have a long tube (not the small mickey buttons you see usually). They explained how feedings worked, how I could keep it bandaged, etc. I didn't want to miss school and idea of a tube hanging out of my belly weirded me out. I told them I wanted to think about it. We drove from Clinic to home (1 hour away). Later that night I told mom I would do it, but I wanted it done fast. I didn't want to chicken out and the sooner it was done then the faster it would be over. She called Clinic and Dr. C had me scheduled for surgery the very next day.

I had some complications with the tube & also got sick that year, so I spent half the year home schooled. I will never forget a classmate of mine calling me over the phone to ask me questions to put in our school newspaper, they eventually gave me a column and I kept the school updated on my health. My principal understood and my parent's received amazing support during the whole time.  My Grammer & Grandpa A (and uncle Brian) would come over all the time and we would pass my reading book around the room and take turns reading The Adventures of Huckleberry Finn. (tearing p thinking about my Grammer). <3 I didn't complain about the tube and was motivated to get healthy to be like the other kids.

It was crazy! I went from 45 lbs to 90 lbs just that school year. I grew a few inches and had more energy than ever before! I got to change out the long tube for a Bard button (it didn't deflate) after a few months. Bard's had a solid piece of plastic that they shoved into my stomach hole after taking the tube out. A few months after getting the Bard placed the surgeon told me about a button that was new to market called the mic-key button. It inflated and deflated for replacement, to make it less
painful. I had the Bard taken out ( oh and I cussed big time when they took it out, no pain meds, they just ripped it out) but, LOVED the Mic-key a lot more.

The hardest part was being hooked up to a feeding machine/ IV pole for 8-10 hours a night, because I never can sit still. I was stubborn at first and didn't like flushing the tube (after it was done). So my mom used to do an awesome Lon Chaney impersonation, all hunched over saying " Masteeer, I want to fluuush your tuube." My mom's humor made anything possible.  (picture left: Mic-Key & right: Hooked up for the night feedings)

By the time 8th grade started I felt like a new person. I tried out for the pom squad (and made it) something I could never keep up with before. I spent 8th grade, excelling at dance, school, and mostly my health!!! In High school I only missed a few weeks here or there, whereas in elementary school/ middle school I missed months.

Once I went to college I had it down to a routine, it was hard going home instead of hanging out past 9pm with friends. But I had to be hooked up by 9pm to be done by 6am to get my vest, etc done before I had morning classes at 8-9am. My health struggled in college, trying to balance everything. But I had some amazing friends who were there for me. *Cough* Stacey *Cough*

Stacey was someone I met and two weeks later we were looking for apartments together for the next year. We became instant best friends. When we lived together she would get my breakfast packed or pack my bag will I finished meds, or when I was sick she would make & hook up my IVs or feedings. Basically, I was living with someone who became my partner from the moment I met her.

So while yes, I did accomplish great things with my feeding tube, I had lots of help. A person with CF needs support from those around them to tackle big decisions or get through sick or rough patches. This was KEY!

Fast forward to 2012. I met Andrew, my now husband. Instant connection. We met in August, He asked me on a date in October, we were pretty serious by December. He read my entire CF blog and was never afraid to ask questions when I met him. He immediately jumped in, like Stacey, and helped me. He'd carry heavy bags, keep me company during meds, make my meds, etc. He moved in with me after my surgery in 2013 and I decided to move with him to Chicago the following school year. I didn't want to let this sweet, selfless guy go and I knew I couldn't do long distance. By Dec 2013 we felt I didn't even need my feeding tube, plus it was starting to leak around the edges a lot ( it was old).

Doc wanted to be sure, so we made a plan. I had to go without using it and still gain weight (and not drop), then I could have it removed. It worked. In June 2014 I had it removed. But typically when they remove them, they don't sew them up. The stomach wall sort of collapses in on itself and repairs the hole itself and the skin should too. Well, I had my tube for 17+ year sand in that time, my skin grew inward around the hole. I had developed a fistula. So after 4 months of waiting to see if it healed, the surgeon agreed it wouldn't.  By that point I had dropped from my beautiful 107 lbs to the 90s again. Because once they removed the tube the hole was still there and leaking everything I drank and small foods. I had an enzyme come out of the hole once. I was scared to eat or drink in public for
fear it would leak all over, bandages didn't even contain it. It was a mess. I was glad in October 2014 when they went in and sewed my stomach shut and sewed the skin closed.

My stomach took a while to stretch out again and eat correctly. But slowly with Andrew's help I returned to my original weight. So while I'm glad it is out and I don't have to deal with the mess, tube leaks, feeding leeks, raw skin. I will always be thankful for the 17 years with it.

I whole-heartedly think it saved my life!!!!! It gave me my future.

So kudos to big decisions to work towards big goals and accomplishing them!





Wednesday, February 8, 2017

Back from Vacation

We spend 5 wonderful days on vacation in Florida and come home to SNOW!

It barely snowed all winter and today it decided to play a little catch up I guess. Well, we enjoyed our few days in the sun! The weather was perfect! (picture: you can see Andrew out swimming in distance)

 I love taking trips & vacations, but having CF always makes it a little difficult. We make sure to pack all my meds in my carry on. I have a small portable nebulizer machine that fits in small spaces. We always call ahead to get permission to carry my vest on at no additional charge. We put all of clothes and my Wabi sterilizer in the big bag, which we check. We just make sure the Wabi is safely packed. They always pull my bags to look at them & check them, we make sure to have a letter from CF clinic too!

As a kid I had feeding tube connectors & feeding to bring on trips. Which adds up weight wise. So flying was tougher. We typically always traveled by car when I was growing up. We even did a driving vacation to Disney for two weeks, stopping at other places on the way home.  My first flight was in 2008 (I think). I have only flown 5 (round trip) times (counting this trip). Two of those have been with my uncles. I LOVE vacationing with my uncles. I feel comfortable around them. I could puke or pee all over and would not be the least bit embarrassed. And with coughing fits, believe me, that can happen :-)

My family is very close, which helps. I honestly think of my uncles as 2 of my best friends. It's nice to vacation with family that just understands everything. When I get tired they notice. Uncle Brian slows down and walks with me or suggests we get snacks. It was a great vacation, and while we packed quite a bit in, I wasn't tired when I woke up the next day.

We did  a murder mystery dinner train ride, spent time on the beach, attended a big Artfest, and took an airboat ride through the Everglades. We saw a dolphin, manitees, pelicans, crocodiles, and more! We even got hold a 2,5 year old gator!


We did a lot, but we always take time to find amazing places to eat! Every single meal was fabulous.  We are all about the food in the house. We plan trips around food sometimes (hence our honeymoon spot). Andrew and I both LOVE seafood, so we made sure to take advantage of that while we were in Florida. We ate A LOT of FRESH seafood. Which is my favorite thing to eat. Calamari, Stone Crab Claws, Paella, Crab, Grouper, and more! YUM! I gained 5 lbs. over vacation. WOW! I mean I'm not really surprised. I ate a ton. The weird part was once we came home I was still always starving. I ate all day the last few days.


I'm starting to wonder if it is side effect from Orkambi. I mean my last appointment showed my lungs slowly climbing back up to my normal function range. I was around 50% and I hope to reach 60%. I know weight & lung function are correlated. I was 105 when we left for vacation. But the scale in the vacation home put me at 110. I don't have a scale in my home currently. I decided not replace my old one. I worry to much over it. So I will find out at clinic on the 28th how I am improving.

Wouldn't it be nice to get a prescription for vacation??? I mean it did bump up my weight big time (and maybe lungs too) :-)