Skip to main content

Packing it on and figuring it out!

Packing it on and figuring it out.

I used the same pronoun to represent two different objects. It seems wrong to do that, but it leaves some mystery... did it work? are you curious?

As you might have guessed the first "it" refers to my weight. Yep, I'm gaining weight. 105 lbs. yay! I'm sooo excited to show/tell Dr. B next week! Although, I do think its all in my legs. Now that I have been walking/jogging every night, I have noticed my legs have gotten quite a bit thicker (this is a good thing). I'm don't think my legs fall in the "chicken legs" category anymore.


Now!                                                                                         2009
you be the judge...

Now, compare them to Fall 2009...
(sorry its a poor quality picture)
I know, I gotta keep working on it..

AND I blame my dad for "skrony legs" genes.  But at least they are better than they were... yipes!

And the 2nd "it" refers to medical insurance/laws.  I'm researching insurance plans/laws in mulitple states/countries amd seeing how CFers pay for all their Meds. I'm very foruntate that I can still be on my Dad's insurance (which covers 100% including clinical trials, etc). However, I want to figure it all out now, so if/when I'm no longer on my Dad's insurance I can make sure I can afford all my meds and don't have to make sacrifices like "Oh, I will never order my Cayston, because it costs $5,000 a month."

Dear CFers,
Please look into Patient Assistance programs like The CF Patient Assistance Program through the CF Foundation.  For more info click here!'
Love,
Cheriz

It's interesting how much difference there is for CF patients between states and countries.
 Some states don't have a single Cf Clinic!!!

Some patients in other countries are still fighting to get Kalydeco!
(for info on Kayledeco click here.

For info on the Quest for Kalydeco in other countries check out their Facebook Page : Quest for Kalydeco  or  follow them on Twitter @QuestKalydeco!
No matter where we live we should support everyone on fighting for the medications that they deserve!


Comments

Post a Comment

Popular posts from this blog

End of Summer -Updates!

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...

How Fostering and CF impact my work

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...

Why I Hope this Hospital Stay is Different

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...