Distractions

We just returned from a fabulous vacation to Florida! We spent 9 days away from home, in a different environment with fewer worries. Except for the fact that my son ran a fever on and off for 4 days and my step-daughter had to be seen at an Urgent Care to get antibiotics for a very painful inner ear infection. I guess no matter where we go, how many miles we travel, our worries are never really far away. We made the best of the healthy moments and had a blast!

I was excited to get away. The next couple months are going to be so busy with business travel, my mother's back surgery, my grandmother's new dialysis regimen, and medical appointments galore. This was the last bit of rest and relaxation that I will likely get for a while. I was looking forward to spending time with the family, the sun, the surf and the sand. However, when I walked into our rental unit I became as giddy as a little girl when I noticed this:

A fully stocked book case! I brought my Kindle, which is currently loaded with 57 books...but these were bonus books. More than half were titles I have not yet read. I have noticed over the past couple of years...the years when my health has become more complicated...I have been devouring books. I am a fiction girl. I have no interest in reading about real life experiences. I feel like I get my fix of real life from Facebook and blogs. I want to be swept away in a story. Something completely imagined...a fantasy. I have always been a reader, but never quite to this extent. I find that I have a hunger for books now.

The first book I read on my vacation was called "Home Safe", which was a little story about a mother/daughter relationship and loss. It was good, but it was one of those books that you move on from quickly. No lasting impression.

The next book was not an easy selection. I kept skimming the titles. Maybe I should read something fluffy like The Wedding by Nicholas Sparks. What about something silly, like one of the Shopaholic books? However, my eyes continually focused back on The Kite Runner by Kaled Hosseini. I know, I know...this book came out eons ago...2003 to be exact. I have wanted to read it and wanted to see the movie, but just never got around to it. I knew that the topic was heavy. Did I want to invest in a "heavy" book on my vacation? Of course, I did! I am a glutton for punishment. I have no regrets. The Kite Runner was by far one of the most amazing books I've read. I learned, I felt, I got angry, I cared and I learned some more... This book will stay with me for a long time to come.

Amir, the narrator of the book, was a young Afghan boy who often lost himself in the written word. He read and he wrote, which often helped him cope. In no way does my life parallel that of Amir, but this aspect of the book got me thinking about the role of reading in my life the past few years. Reading helps me fill all the quiet spaces...the times when negative thoughts and worries have the opportunity to creep into my mind. I find that I obsess less about my health when I'm engaged in a good story. When I'm reading a good book in a doctor's office waiting room I find that I obsess less about the germs invading my space. So here lies the correlation...as my health becomes more worrisome I rely more on my distraction...or shall we call it a coping mechanism. So when the going gets tough, you know you can find me somewhere in a corner with my nose deep in a book...er...make that my Kindle.

I decided to add a page to my blog with a list of all of the books I remember having read over the past couple years. I know I'm missing quite a few. This will be a record of all of the hours that I have spent coping...getting lost in a reality that doesn't include Cystic Fibrosis.

On the health front, I am pleased that I have been able to avoid getting any of the illnesses that all three of my kids have had over the past few weeks. I am still on three antibiotics, so maybe that's helping...who knows? I was finally able to schedule my appointment to see Dr. O at the National Institute of Health. I will be heading to Bethesda, Maryland for a couple days in early May for my work-up. Since I re-cultured the mycobacterium, I am really looking forward to hearing if my treatment protocol will change. The coordinator I spoke with today said that they typically treat their patients much more aggressively than other centers. I'm wondering if that may mean more months of IV's are in my future. I am hoping that we can find something to eradicate this beast... I have been having a difficult time following Facebook lately. I have met several people with CF on Facebook who also culture MAC and/or m. abscessus, and the majority of them are doing very poorly right now. I really hope for the best for them. At the same time, it's really hard not to compare and imagine that I may soon in a similar way.

My job over the next month is to not obsess over the possibility of a decline or more IV's. I guess more reading is in my future? Next up "Sarah's Key" followed by "A Thousand Splendid Suns".

Letter to Emma #1

My Dearest Emma,

You are a beautiful soul. You are the little girl I never thought I'd have...my miracle baby. The first time I looked down at your wrinkly, red little face, I was madly in love. I used to dress you up like a baby doll. I was so proud of you and overjoyed that you were mine!

You have ALWAYS been a Daddy's Girl. I can't say that I always found this to be fair. After all, I'm the one who carried you in my body for nearly 10 months. I gained weight, endured pain and have permanent stretch marks as a reminder. I worried about you from the moment I found out that you existed. Your father, on the other hand, gained a few pounds of sympathy weight...but never endured quite the same experience. Yet, you always preferred Daddy. I've taken enough Psychology courses to know that this is common in little girls. So I never really worried that it meant anything significant...until recently.

Early last week you woke with a start very soon after falling asleep. You ran into me and Daddy's room sobbing, saying that you had a bad dream that Daddy died. You were inconsolable. We tried to find out more details, but you just cried and cried...hanging onto Daddy for dear life as I stroked your hair. You slept with us that night. Afraid that if you left something horrible would happen.

As I thought more about that incident, I tried to make sense of your tears. This was much more than the run of the mill reaction to a bad dream. Why were you afraid that Daddy would die? Might you have been afraid that I was going to die, but unable to express this fear? Might you have already come to terms with the fact that I may die soon, so you were fearful that if Daddy died too you would be left without a parent. Maybe I'm making more out of the situation than need be. I just want you to know that my heart hurt for you that night, if only because I hate the possibility that my disease makes these thoughts even enter your world. I truly hate that my disease complicates your otherwise normal childhood.

As you have grown it has become apparent how very similar you and I are to one another. Not only do we hear how much we look alike all the time, but I think you have picked up many of my traits...both good and bad. You're a smart girl...always preferring books over dolls, you know what you want and how to get it, you can be stubborn, you truly care even if you have difficulty showing it at times and you struggle with anxiety. Sometimes we butt heads. Even as I'm writing this you became upset with me when I told you that you couldn't put a K$sha temporary tattoo on your forehead. I don't care how temporary it is, the answer is still no.

As you've gotten older I can feel that you sometimes keep me at arms length. I often wonder if this is self-preservation. Might you be afraid to get closer, since the reality of losing me is there? When I was sick a lot, sometimes you even seemed a little angry with me. I want you to know that I understand. I honestly think I would do the same thing. I am a master at putting up walls to protect myself from devastation. I get it and it's OK. However, no matter how high or thick that wall gets, I will never stop saying and showing you that I love you to the end of the Earth and back again.

I know that you know that this song reminds me of you. I know that you roll your eyes every time I say that when it's playing on my ipod. It's true, though. Emma, I want you to listen to these words and please, ALWAYS know that I love you more than you may ever realize during my lifetime. You're my little M&M after all...

I love you and I love you and I love you!

Mommy

(Sorry I couldn't get the actual video, as it wouldn't allow me to embed...don't click on the screen if it doesn't play...like it says)

CF Denial Awareness

I got my new "CF Denial Awareness" shirt in the mail today! Look...


I told my husband that I ordered the shirt as I was giggling about the message, which I find amusing. He just looked at me, dumbfounded, and said "I don't get it". Please tell me you get it.

CF denial is sometimes a wonderful thing. Not the type that leads to apathy and non-compliance. Instead, the kind where you unconsciously go through your daily CF routine, while not thinking or obsessing about the harsh realities of this beast we call Cystic Fibrosis. The kind where you're feeling sorta good for a day or two and you 'almost' forget. The kind where you're so busy or preoccupied with life that CF doesn't make it into your thoughts for minutes...sometimes hours. The kind where you sometimes feel like everyone else...all the other 'normal' people. This is my kind of CF denial and let me tell you...it is one comfortable place to be. So this is my effort to raise CF Denial Awareness!

This shirt was designed by Kelly Langs, a graphic designer with CF, for the late Paul Mooney aka "Q". I never got to know Q...he died just before I delved into the world of cyber-CF. From what I've heard, he was a funny guy, who wrote and sang music about CF in a very Bob Dillonesque fashion. I have all of his songs, with my favorite being "Cystic Dreams". Listening is a good time. These shirts were being sold for Q to help pay for his transplant. Following his death, Q's parents started an organization call The Cystic Dreams Fund and all shirt proceeds now go to this fund.

If you want a shirt like mine, you can order from here.

Ciao!

No Longer Who I Used To Be

I work full time. My office is in New York and I live in Ohio, so I telecommute. It works for me, because most days I get the kids off to school head to my basement and do my thing for 8 hours. I'm able to do my nebs at my desk in front of my computer. It's really the ideal situation for me right now.

However, I manage/consult with 22 Chapters of my organization...18 in the US and 4 in Canada. That means I must travel. A few years ago I was traveling A LOT. I was reaping the frequent flyer rewards...being upgraded to first class from time to time...getting to pre-board and walk on the "blue carpet" that is reserved for "elite" members only. At the security checkpoint I knew just how far I had to strip down, what had to go in a zip lock bag and how to smile just right at the TSA agent to avoid a pat down. I used to zip through the airport in my suit and heels, checking my Blackberry, walking with purpose...because I had places to get to and people to see. I'd catch my flight, get to my destination, catch a cab and meet with colleagues for many more hours. I'd then meet up with any friends I have in that town/state/province, head back to my hotel late in the evening, get a HORRIBLE nights sleep in a bed that is not my own, then get up and do it all over again the next day. I'd fly home, being sure to buy some little trinket for each of my kids from a random airport gift shop. This always helped with my own guilt for leaving them for a few days. Then I would get up the next day and work a full day...never missing a beat.

I'm pretty certain those days are now over...

I set out for my first trip in many months last week with letters from my hospital explaining my medical devices and wearing sensible shoes. I knew before even leaving for this trip that the heels were going to be a no-go. I got through security with no problems and my flights to Oklahoma City were fine. All was on time and smooth. Besides the fact that my lungs felt like they were shriveling like raisins while on the planes, all was great. I was thinking...this isn't going to be hard after all.

I got a good nights sleep with a little help from my friend, Ambien. My work day went well. I even got to meet with a fellow CFer, Darby, that evening. We compared coping mechanism and micro organisms, listened to the music of a fellow CFer who lost his battle and laughed a bunch...all while abiding by the three foot rule. Good Times!

I had another OK night of assisted sleep, woke bright and early (4am) and made it to the airport by 5am for my flight. We all boarded the plane and pushed off from the gate. All was right with the world. It was going to be another smooth day of travel. NOT! It turns out Houston was not allowing planes in due to fog. Back to the gate we went to wait for our clearance. I bought one of those gynormous bags of trail mix and read for a good while, until it was time to board once again. Three hours later...off we went.

We arrive in Houston and have to exit the plane outside. It's 175 degrees outside, and being a born and raised Ohioan, I'm draped head to toe in North Face gear. I start to sweat. My skin starts to burn from the salt being left behind. I rub my eye and now I'm done for...salt in the eye is the worst!

I get into the airport and find a screen to get information about my next flight. Turns out it takes off in 15 minutes. I spot a cart with one of those holier than thou drivers who gets to decide who gets a prized seat on the vehicle. I contemplate asking...maybe even begging...for a ride. I even thought about pulling out the CF card for this one. Then I decided it wasn't worth the questions or the ridicule. I think I would have cried at that moment if the driver had said, "But you don't look sick".

So I run, only to find out after a few minutes of running that this is going to be a marathon. This is where I thank the Lord that I decided to wear sensible shoes. After more than a mile of running with 2 bags wearing some of the most insulated clothing there is, I finally make it to my gate a few minutes too late. I rebook on to the next flight to Cleveland and set out to find something other than the sunflower seeds and raisins that I have been munching on all morning. This, of course, means more walking...more lugging of bags...more sweating... The people...there were just so many of them. A lot of them were twice my age! They were all wearing their suits, checking their Blackberry's and walking with purpose. I was just sitting there...defeated...coming to terms with the fact that I was no longer part of that club. My body has been beaten up by this damn disease.

I finally drag myself to my new gate and board my new plane. When I got to my seat I pretended to struggle with getting my bag in the overhead bin, until a kind business man lifted it for me. When I was a "real" traveling business woman, I would have NEVER let anyone help me with my bag. That would have been a sign of weakness. This time I just didn't care.

I make my way to my window seat and put my headphones on to attempt to avoid any and all interaction with other human beings. The guy next to me doesn't get the hint. He bumps my arm and signals for me to remove my headphones. I humor him, only to hear him tell me how very glad he is that he's sitting next to me on this flight. He continues to tell me how his last flight was hell, because he was sitting next to a guy with the most disgusting cough. He was certain that the guy had Tuberculosis. It took every ounce of restraint I had to not tell him to F$#& Off. I should have told him that I have something similar to TB...I should have coughed on him. Instead, I just put on my headphones and pretended he didn't exist.

I got home in one piece. Even though every muscle, bone and join ached. I also brought a nice little sinus infection home with me. While I used this opportunity to bitch about how crappy business travel can sometimes be, I am happy to still feel well enough to work. I have just come the the realization that I am no spring chicken anymore, especially in CF years!