Friday, July 22, 2016

Just Always Waiting

Secondary Medical Problems:

Well, it's been a while since I blogged. Something EXCITING though is we moved into our new home just under a month ago. By moved in... I mean Andrew and I started living there without our furniture. We finally got our furniture and our INTERNET a few days ago.  We had to do some work in it first, before we moved everything over.  I also had 3 Real Estate closings in the last month, plus other medical problems. t has been a busy time (with no internet), so sorry about the gap.  :-) Update: Basically I'm just waiting for everything.

I'm waiting for my eye surgery on September 14th. I'm waiting for insurance to pre-authorize, approve, and move forward with the Orkambi.  I'll wait until after my surgery to start Orkambi, since the side effects can be pretty horrible. But I will discuss my going on Orkambi once I have the "thumbs up" from insurance.

I'm excited to get my eye fixed finally and I'm very excited to see if Orkambi helps me and makes a difference. Plus, I'm going to be setting up more appointments to figure out all my GI problems and arthritis problems (and finally/hopefully get an official diagnosis for the problems).

The older I get the more I realize my secondary problems are becoming more of an issue. I always have dealt with the lung and gastrointestinal problems since I was a child. I get my liver checked every 6 months and keep an eye on my bone density, since I have struggled with those in the past. Plus, Docs have always said I have CF related Arthritis, but I really need to get an official diagnosis, because I think I'm almost at the point where I need meds for it. I'm trying not to take any extra medication and don't want to add more meds, but if I DO need them in the future, I want to have my ducks in a row. ya know?

I do have days where I have trouble with stairs or feel like my body is 20-30 years older. I have trouble getting up off the floor.Then there are the flare ups, where my joints freeze up and I can't move at all. I usually get a fever and my joints kill me. It's gotten bad enough in the past that I needed help changing my own shirt, because my elbows/shoulders couldn't bend. I've been stuck in wheelchair before from it (usually when its really bad a rash appears with it).. Lately my joints just have felt old and stiff. Not frozen. So not sure if it's something different or not.

After a bad fall a few months ago I joked about getting a life line bracelet. However, it made me think about the medical allergy alert bracelet I had talked about in the past.  Here is my thought: I'm deathly allergic to morphine. Last time & only time I was given Morphine I had anaphylatic shock and my organs starting shutting down. So it's bad to say the least. I always tell everyone I can't have it, but the ONLY reason certain people have wanted me to get a med alert bracelt is because EMTs supposedly use Morphine in the field. Which means if I'm unconscious from an accident, etc they would need to know not to administer pain meds. It's seems pretty rare that would happen though, and I absolutely hate bracelets. I never wear them. They never fit right, so I'm really torn. I know others would feel better, and it is smart, but ehhhhh.... So I'm still debating on that... IDK.

Otherwise, I'm just excited to get my health all figured out!!! Andrew and I hope to really make some solid "future family" plans. Including looking into surrogacy, adoption, and fostering in September/ October once my body has had time to adjust to the Orkambi and my health is all figured out. And in the mean time I will be working on our house, doing Real Estate, and power walking. I'm doing another 5K on July 30th for suicide prevention in Peoria, IL. All proceeds go to the Hult Center for suicide prevention programs. I'm trying to find more Central IL 5ks for causes too (so if you know any let me know)

Friday, July 8, 2016

Health and 5K

Getting my Health Back:

I was at my healthiest in 2012. I was walking every day and jogging some parts of that. I was in a musical where we had dance rehearsal at least 2x a week. And I did a 5K where I pushed the hardest I could, finishing in 42 minutes. Well, I did another 5k last Saturday (on my mom’s birthday) and power walked the entire thing finishing in 53 minutes. 

( Picture to right: Ada & I at the 5K)

I knew I couldn’t jog, since my hips now like to pop out of place and it is too hard on my joints. My arthritis has gotten a lot worse in the last four years. While I know I will never will get back to level of health I had in 2012 (due to normal progression of my disease), I think looking at how I achieved that level, will help me to reach the best health I can today. I had a steady hourly job that allowed me to schedule out my day. Routine is what has always worked best for me, which is why I struggled in college and with jobs where hours changed a lot. In 2012, not only did I have the time to walk every single day, but also the motivations. I also started out slowly and gradually added more distance with time.
I had someone who walked with me 2-3 x a week. Those were my walking days, I’d usually push myself to jog walk 2-3 nights. So I’d be active walking or jogging typically 4-5 nights a week. They weren’t long periods of time or very long routes, just a 1 mile or so at first. I started this in late February and by July was jog/walking 2 miles at least 2 x week. Then I built up to do the 5K in September. 

Having someone walk with me 2x a week really helped keep me on track. My 2nd major motivation was my health in general. My lung function was around 56-58%. Whereas, now I struggle to hit 50% at clinic. I’ve lost 10% lung function in the last 3 years. I’m hoping being more active (with the help of “hopefully” Orkambi) will help me increase my lung function again. In 2012, I actually hit 64% at one clinic. While I think 64% is a pipe dream, I’m trying to 58% again. Which will be hard, but I WILL do it! My 3rd motivation was Laura. My best friend Laura (who passed in 2014 and also had CF) was being evaluated for a lung transplant in 2012. We were hopeful and she’d tell me how hard it was and that I needed to push to stay healthy. She was honest and open. She wanted me to succeed more than anything. I was also motivating her to keep her health stable until she could get her new lungs. [Note: Laura was denied transplant listing and therefore, had to try to make do with her 18% lung function]. Her living 2.5 years with 18% lung function was amazing, especially considering all her secondary problems, like diabetes, gastroparesis, etc. She was one tough lady.

While Laura isn’t here anymore to cheer me on, I can still hear all the words of wisdom and motivation she gave me. I have a playlist I put together that reminds me of her and my future for while I go out walking.  My new motivation is my future with Andrew, in our home, hopefully with a family. The biggest motivation is wanting to be a mom (via surrogacy/ foster/adoption) and to have the ability to run and play with them. I want to be able to pick up my child and carry them if they are scared or hurt. I don’t want to drag an oxygen tank with me to their games or recitals. I want to be healthy for them. I want to live to see them grow up.
I can not jog anymore due to arthritis, but I can power walk. So I’m going to keep walking and try to do another 5k for a good cause later in the year! I loved that the one I did last week. It was for ALS research. I have a friend, Sean, who has ALS. It is a truly horrible disease and I seeing him continue to fight it, is some powerful motivation right there. Perhaps I will powerwalk the CF Walk in October!

Anyway, fighting for my health and trying to get to a point where I feel healthy and not sick is where I am right now. I will continue to update you as I go along. Also, if anyone has a Fitbit add me!

Wednesday, June 29, 2016

So Proud

Cystic Fibrosis Great Strides Walk:

Saturday, June 25th was the 3rd Annual Great Strides CF Walk. It was a really fun day and I'm so fortunate to have so many people that truly care about furthering the CF Foundation's Mission! Each year the walk grows in activities and fun! We had more raffles and silent auctions than ever before. 20 silent auctions & 10 raffles. Subway in Henry, IL donated all the sandwiches, Sullivans donated the chips, and Dave Huseman donated all the water. We had Unique Twist create balloon animals and Chariss Hoffman did face painting. T Entertainment donated their time to DJ our event  and had a jam sale too. Teams walked 1 miles around the loop at the park. All the sponsors & donors were listed on the banner :-) make sure to thank them and show their businesses some love!

Overall, the teams raised more than they did in the past. Our walk raised $11,750 on Saturday. While this is quite a bit lower than the $23,000 we raised last year, I’m very proud. One of our biggest teams from 2015 moved out east and another large past team had another commitment that day. Those 2 teams were responsible for $13,000 of the $23,000 last year.  I was projecting us to raise around $9,000 this year and the teams really pushed themselves. Team CF2 (my team) typically raises $7,500 a year, this year we brought in over $10,000 of the donations!  Also, we are not done fundraising for the walk yet. The link remains active and open through the end of the year. So anyone who wants to raise more, please feel free!

We have a fundraiser going on at Rip’s in Ladd, IL on November 21, 2016, as well as a couple more bake sales this year.  I’m so proud of my team!!! I can’t believe of the 85 teammates that were able to come & fundraise we all raised $10,000.  A few of my team members really stepped it up. One asked friends, co-workers to donate, and shared their link online a lot; he raised $745. One team member had a bake sale at their Chiropractic office on Wednesdays (for a month), and threw a dessert party at their home. They asked their friends to just brings donations for CF Foundation. Between the two events they raised $780.  Another team member makes jam & jelly all summer long and sells the jars for $5, donating all proceeds to our team, she has raised over $300 already and still making more! All three of these team members found a way to fundraise by themselves to supplement the amount they donate to the walk. Way to go guys!!!

This supplemental/secondary fundraising is called passion fundraising. Fundraising is the only way this team or walk is going to grow! I hope it continues to grow, as it is very important. People may not realize the almost every single cent donated goes directly to the CF Foundation for research for a cure.
I want a cure in my lifetime, for many reasons. 1. I’m selfish. I can tell I feel like I’m 80 years old already, my joints, bones, body just hurt almost every single day. Some days I wake up feeling like I’m suffocating until I do my breathing nebs. Some days those don’t event help as much. I can tell every year how much more toll Cystic Fibrosis has taken on my body. I am DETERMINED to live a full life.  A beautiful life with Andrew, with goals and dreams. My dream is to have a family and to see my kids become adults, get married, even wish to become a grandparent one day!  2. I want to see the day a child is born with CF and no longer given a “life expectancy”  3. I want to know the future generations will have a better life (medically) than I did!

So please consider joining us next year, helping us plan, fundraising, and make a difference in all the CF Community’s Lives!  Thank you!!!!

Pictures will be posted as an album on Cheriz: My Life with Cystic Fibrosis (Facebook page)

We started putting together a Walk Committee for 2016 and some big & exciting changes will be happening, let me know if you want to help us plan the walk :-)  ALSO, make sure to check back. Soon I will be posting about our new house we bought and the next big step for Andrew & I's future, plus I'm starting Orkambi soon!