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

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

Post- Surgery Appointment

Post Surgery Appt: As you prolly know, I had Laparoscopic Triple Hernia Surgery last Tuesday. Here was a picture of me devouring a piece of bread so I could go home afterward the surgery (4 hours post surgery and 20 mins post waking up from recovery). I was ready to go home! Today I had my post surgery check up. He said everything in the surgery went well and besides the finding the 3rd hernia there were no surprises. He pointed out where the staples/stitches (they are holding the mesh in place) are in me. I have two on each side at the end of the mesh (so 4 on top) and two down farther in my groin. Apparently, I just have one huge piece of mesh that runs the width and length of my whole abdomen/groin area. Bahaha. I am Inspector Gadget after all. He said a few more weeks before I can lift stuff or exercise. Also, he said the area where the staples are will hurt when bending or twisting. However, I only notice really when I twist or turn too fast. Overall, it was a nice appointment

Theatre and Life...how to fit in CF?

Fitting CF into my life: Cystic Fibrosis won't be hard to fit into my schedule right now. As I just finished my job watching my babysitting kids for the year. I'm currently job hunting and taking classes on Mondays at the local community college (as a pre-req for Grad programs/and for fun). Mulan Jr, just ended today. We had two shows. Back-to-back performances are harder, since I had a busy day before the shows, I didn't get a chance to do my meds before the shows. Therefore, I end up bringing my therapy machine along.  Yep, sitting in the light booth and doing my meds, while watching people take their seats. [Note: I turned my therapy machine off when the house lights had to go out.] Its not that hard to fit them in. You just have to be willing to do them sometimes in unexpected places and be willing to have others find out about it. I had two people in the light booth with me, neither knew I had Cystic Fibrosis, but neither were bothered by the nebs. So bottom line