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!


Labels:

Comments

Post a Comment

Popular posts from this blog

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...
Post a Comment
Read more

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...
2 comments
Read more

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...
2 comments
Read more