Let Me Show You My O Face

My little cousin Asher is one of the cutest kids around. He's to that stage where he can copy much of what you do and does it rather well...except he's also MUCH cuter.

Flash Me Friday - Kitchen(s) :)

This week's edition of Flash Me Friday is the Kitchen!! Mandi actually took pictures of the kitchen last night to send to our Grammy so this one was easy. You'll see that it also includes a picture of what I call the dining room, but Mandi also calls it the kitchen. We've had quite a few spirited debates about that which usually leads to quite a bit of laughter...and tears by me cause I always lose the debate :)

There's a little nook with a desk in the corner of the kitchen. Perfect to pay the ever growing stack of bills!!

This is our "second kitchen"...LOVE YOU HONEY :)

....and this is our kitchen

Are you interested in also participating? This brainchild of Jen over at The Groettum Family blog is going to be a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever. If you want in on the action, please visit here for the "rules".

What the _____?: July 1st, 2010

So last week we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. We don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) Susie's name will be submitted into the drawing for coming up with the series name (thank you Susie!!) 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org, as Andrea R found out last week (which by the way was hilarious) :) 4) I REALLY enjoy this contest and I look forward to the weeks to come.

This week's picture:

Alright, what do ya got!?!?

Last week's photo with the winning caption:

Winner: "Between a rock and a hairy face"

submitted by Caroline

2nd: "I went on a hiking trip and all I got was this stupid beard"

submitted by Melissa Jones-Weston

3rd: "When Hairy met Mandi"

submitted by Jen

³Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; ⁴perseverance, character; and character, hope.

Romans 5: 3-4

Confessions of a Cyster

I wanted to share with you a new blog to the CF community that I am very much enjoying. Stacey has quite a way with words and her posts (and pictures) are quite entertaining. She recently started a series detailing certain segments of her life and it's amazing how many of our experiences overlap. I encourage you to stop by her blog, become a follower and say hello.

Growing Up with CF in the 70's and 80's...

1977 ~ 1981

I'm not sure where to begin, so I'm going to begin at the beginning. I was a sick, sick little girl. I spent most of the second year of my life in the hospital. No answers were ever given to my parents about why I ALWAYS had pneumonia. My problem was that I was of normal weight. I couldn't possible have Cystic Fibrosis, because I was not failure to thrive. Therefore, they refused to even give me a sweat test. Back in 1977 you either had CF or you didn't. They didn't speak of variations in severity and symptoms. My digestion was adequate, so I must not have had the disease.

The medical team must have thought my mother was either crazy or a b%*ch.After a year of hospitalizations, she refused to take me home until someone found out what was wrong with her little girl. Thus, started many years of my mother being my #1 advocate! They finally caved and gave me a sweat test. They were shocked to discover that my sweat test levels were through the roof. I had Cystic Fibrosis. When I improved they referred me to an allergist for ongoing care (what was that about???) and sent us on our way. They gave my mother the facts, which were that I maybe had 10 more years of life ahead of me. Years filled with 2 hours of rigorous treatments each day, many pills, medical appointments, worry, anxiety, grief... I don't remember a time in my life where I didn't know that my life was going to be shorter than most others. My mother was very honest with me, which I appreciate now.

For those who don't know, CF is a progressive and terminal disease that effects the lungs and digestive system. For me, the digestive symptoms are very mild. I do get repeated lung infections. Each infection causes scarring in the lungs. The scarred areas of the lung no longer function, resulting in the need for a lung transplant. In the 1970's, when I was diagnosed, the life expectancy was 12 years. By the time I was 12, it had improved to 21 years. When I was 21 years old, it increased to 32 years. With recent medical advances and more frequent lung transplantation, about 50% of us are living to see the age of 37... I'm hoping I can keep staying ahead of the trends!

From what I remember, my parents divorced soon after my diagnosis. I think my mother grieved about my diagnosis, while my father felt an enormous amount of guilt. As a genetic disease, CF is passed to a child through the parents genes. I think my father felt somewhat responsile for his little girl being brought into this world with a death sentence. I have since discussed this period of time with both of my parents. I have let them know how much I admire the sacrifices they made to keep me alive. The sacrifices were MANY. I let them know that I have never once blamed them for my CF. I actually feel like my life may not have as much meaning if I didn't have this disease. Don't get me wrong...I HATE CF...I just sometimes can appreciate the opportunities and insight that this reality has provided me.

Many of my early memories revolve around treatments or hospitals.

• I remember being locked in a glass box and screaming my head off. I think I was about 3 or 4 years old. I could see my father, but couldn't understand why he wouldn't rescue me. I remember the look in his eyes...the look of helplessness. It was very hot and I think they were trying to make me sweat. This was not the box they put you in for PFT's. I think it was an archaic way of doing sweat tests???
• I remember my mother once bringing my nebulizer to pre-school and showing my teachers how to use it. I was sooooo humiliated!!! I remember hiding behind a book shelf in the classroom. I was NOT going to get a treatment in front of all of my little friends. The horror!!! Was my mother trying to ruin my social life or something???
• I remember recovering from my sinus surgery when I was 5 years old. I was in a room with a little girl who got hit by a Greyhound bus. Her parents never visited. She cried out in pain all day and night. My mother ended up sitting with her as much as she sat with me. That was my first glimpse of suffering and the kindness of my mother.
• I certainly remember the hour in the morning and hour at night of clapping treatments that I had every single day growing up!!! Not because of being "beaten" to keep my lungs clear, but becuase of the HORRIBLE television my mother made me watch during my treatments. I think I saw every single episode of Pete Rose's morning baseball program...seriously!!! What was with that stupid chicken??? I also had to sit through every Cleveland sports disaster...baseball, basketball, football...I mean seriously!!! I got a little break when my father did my treatment with a little bit of Solid Gold, Hee Haw and Donnie & Marie...whew!

So let's summarize...

1) My first few years of childhood were not quite as carefree as I would have liked.

2) My parents were/are my heroes!

3) I am not my disease, but my disease has helped shape who I am.

4) Advice for CF momma's out there ~ let your child watch what they want on TV during treatments or they may hold it against you forever!!!

New Insurance...In an Old Kind of Way

Mandi started a new job last week and with that came new insurance. I've been on COBRA since we got married but have yet to make a claim on it. They may come after me for some meds that were tabbed to my old insurance, but that's only because we got 17 different answers to just one question. The questions was simple in nature, but seemed impossible to answer by anyone that we spoke to. The question was this: "When does my coverage end?". That's simple enough right? We were told 60 days, 45 days, 30 days, 14 days, immediately, whenever the paperwork is filled, whenever the paperwork gets processed, etc. Finally (we think) the answer is that my insurance ceased the day we got married. Again, we're not sure, but then again, it sounds like the powers that be aren't either. We got COBRA just to be safe and we didn't want to have a lapse in my coverage.

The great thing about Mandi's new job is that I'll have the same exact insurance that I had under my mom. I'm hoping that will limit the number of battles that I have to fight with them as they "know me". But, as we all know, insurance companies rarely pay without a fight. It will be very interesting heading into today as I have a CF appointment plus I have meds to fill. It's always a little nerve wracking when switching policies and today will be no different. I hope that it's a smooth transition though and I won't have to spend hours upon hours on the phone with these guys.

I guess the first order of business is figuring out what my new policy number is :)