Cheriz: My life with Cystic Fibrosis

I have blogged a little in the past about Andrew & I's challenges with starting a family. Our first step was to buy a home. Which we did in June! If you haven't read the Guestblog I wrote for the CF Foundation, it will give you the background to our decision making & how we plan to become a family. Read it right here at the CF Website!  It will help you understand all our reasoning.. I started by talking to the social worker at my CF Clinic. She directed me to compass. To be honest there wasn't much else to do. So we eagerly called compass and found out there are a few grants that help with adoption costs, but not much support for surrogacy and foster care. The  Compass (CF Foundation Help Site) did give us the name of place that does genetic testing that they said was fairly inexpensive. When we called the place they said they can't tell us the cost or about the tests, until we had a script from a doctor.  I called a few GPs to get Andrew an 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...

I don't really like to make New Year resolutions. My resolutions were always something really important like being 100% compliant with nebulizers. That's a lot of pressure when you do 10 nebulizers, 3 airway clearances and take over 50+ pills a day. If I go out of town and forget my pulmozyme, It ruins my prefect streak. While they are simple mistakes, once I mess up, I have lost that competitive streak I had and it's hard to stay on track. So I decided this year just to examine where I am at now and take it a day at a time. My doctor explained my lung function in a great way that emphasizes it's importance. I have at the most 65% lung function (due to permanent scarring & damage). Which, it's sad to realize at my healthiest, I'm still missing 35% (over 1/2 of a lung). But the lowest I can go is really 20% and I start preparing for a transplant at 30%, so 30% is somewhere I don't want to be EVER! So if I have between 65-25% range from best to well (w...