Tales From the Rose Garden

Tales from the Rose Garden: A Look at Life with CF

2008-04-21T13:04:00.000-07:00

Just a note to let you know that my project of over two years has been completed, Tales from the Rose Garden: A Look at Life with Cystic Fibrosis. Though not as long as I'd planned--I lost a lot of work due to computer malfunction at the end of the first year, and there were stops and starts due to illness--it is finished nonetheless. It is a collection of stories and poems written by CF patients and their families. I self-published with a company called LuLu, that I have used in the past when publishing my book, Grant Me the Courage about my brother's battle with AIDS. Proceeds from this book will benefit the Cystic Fibrosis Foundation. To view the book or purchase, please visit www.lulu.com/kerrimarks

Sink One for CF Disc Golf Tournament

2008-04-21T07:48:00.000-07:00

2nd Annual Sink One for CF Charity Disc Golf Tournament
Presented by INNOVA Disc Golf

Saturday May 17, 2008
Winthrop Lake (rain or shine)
Rock Hill, SC

$20 entry fee/donation

9:00 am sign-in, player mtg at the Shack
9:00 am "shotgun" start time for Round I
12-2:00pm luncheon catered by Firebonz All-American BBQ and Grill (for all paid participants) with live music by Loner Bill, and raffles/auction
Round II begins after lunch
Trophy presentation to follow Round II, with special guest Patti Mercer, Mrs. South Carolina International 2008

Trophies are presented for the high score in each category: Men's Pro, Men's Am, Ladies Pro, Ladies AM, Juniors (age <15). All ages and skill levels are encouraged to participate.

"Hole" sponsorships are still available for $100 each.

Every penny raised by this event will directly benefit the Cystic Fibrosis Foundation to help find a cure for this terrible disease.

Come throw some discs! Help save a child's life!

Our goal for this year is to raise $3,000. Won't you please help!?

For more informmation or to register online, please visit www.marksmanweb.com/65roses

But at Least I Still Looked Good...

2008-04-16T11:01:00.000-07:00

Recently, my sister was reading an article in a magazine about writing your own "7-word biography." Without batting an eye, I had an answer for her:

"But at least I still looked good."

I swear, I'm going to request that be carved into my tombstone one day. It's become a running joke in my family. If I had a dollar for every time someone looked at me and said, "but you look great," I'd be rich!

That is the problem with trying to explain CF to people. It is an invisible illness. I can remember eating in Taco Bell during 10th grade lunch and having "old" people give me grief about what they perceived must be my "smoker's hack." I've had people sitting in front of or next to me in the movie theater get up and move (that usually makes me cough louder and harder and aim it at them because I'm a sick twist like that). I've even had people yell at me in parking lots if I happen to use my handicap placard for parking (I guess if I don't exit my vehicle wearing braces or with the use of a wheel chair lift, I must be faking it and abusing the system, right?)

It's a commonality that people tend to fear what they don't understand. But it's even more common for people to disregard what they cannot see. Call it the "ostrich syndrome" or call it ignorance. Either way, it makes it difficult for a person with CF--especially for someone with a mild to medium case.

Typically, people react surprised and confused when they learn I have CF; mostly it's due to the fact that they've never even heard of it. But when I explain what CF means, they look at me bewildered and say, as though to comfort me, "but you look great."

Like most kids living with a chronic illness, somewhere around age 10 I learned how to work the system. C'mon, admit it...you know what I'm talking about. You learn when and how to play your trump-card. Some days you need to look a little sicker than you feel to avoid school or work or whatever, and other days you need to look better than you feel so as not to miss out on something else. I'm an expert in this department.

My mom got to witness my most recent experiment with the looking good phenomenon. I was sick as a dog when I was hospitalized last fall. I was admitted on a Monday, but knew my best friend from high school was flying in on Friday for a holiday weekend. What to do, what to do? Knowing full well that I would leave with my PICC and handle my own meds at home, I needed to guarantee an out. I spent Monday and Tuesday completely pale and sick and dirty and stinky. Wednesday, I showered and started the pretty process. Thursday added the tiniest bit of blush on my cheeks after that shower. And come Friday morning added the miracle that is black eyeliner and mascara. I told my mom to keep track of the reactions. No lie, within 30 minutes I had been told "you look great" by 2 nurses, a nurse's aid, the lady from dietary that took away my breakfast tray, and finally the doctor. Short story long, I was at the airport to pick up my friend and her family.

It baffles me, really, the idea of how having CF and looking good surprises people. There's this preconceived notion that in order for me to be suffering or fighting for each breath, I should weigh 98lbs and have tubes and tanks attached to me.

Well, I'm here to tell ya, that's a bunch of crap.

Sure, there are going to be days (like today) where I couldn't be bothered to take a shower, let alone spruce myself up. But sick or not, if styling your hair, or putting on a little makeup, or wearing cool outfit makes you feel good about yourself, then more power to you. It all goes back to the old saying "don't judge a book by its cover." People shouldn't judge others based on their appearance, or by how they cough!

So next time you see someone in the handicap space that doesn't outwardly appear to have any disability, don't assume the worst. They could have CF, or cancer, or lupus, or heart disease, diabetes, etc. Just because someone looks good, doesn't always mean they feel good. Again, quit with the assumptions and go ahead and ask how we are doing. Looks can be deceiving and sometimes we may need that opening to tell a person what's really going on in our bodies. And other times, we really feel as good as we look and would appreciate your asking why so we can share the joy.

For young or old, in sickness and in health, when living your life...look good doing it!

All About Me...

2008-04-16T10:41:00.000-07:00

My name is Kerri Marks (nee O'Connor). I grew up in Levittown, NY and graduated from Island Trees High School in 1991. I am the youngest of six children.

I was diagnosed with cystic fibrosis at the age of 7 at Nassau County Medical Center. Cystic Fibrosis (CF) is a life-threatening genetic disease that affects the lungs and pancreas that has no cure. Until age 19, I was seen at the CF clinic at Schneider's Children's Hospital at LIJ in New Hyde Park, NY by Dr. Jack Gorvoy and his team.

It seems as though I was sicker throughout elementary school and junior high than in later years. I spent 7th and 8th grades on home-tutoring. By 9th grade, my school absences started to slow down and I wasn't hospitalized again until 11th grade (spring of 1990). After graduation, I briefly attended both Nassau Community College and SUNY Farmingdale. During and after my high school years, I worked in various retail settings and as a waitress. In 1993, one of my older brother's died of AIDS.

In February of 1994, I moved with my parents to Fort Mill, SC. For the next two years I bounced back and forth between GP's and basically treating myself; self-diagnosis is a fine art. We were new to the area and the closest CF clinics were hours away. I trusted that I knew my own body better than anyone else--plus my mother was a nurse. We did the best that we could.

During that time, I attended Winthrop University and met the man who would become the love of my life. My husband had joined the US Air Force on a "delayed" enlistment program. It was early Fall and we knew that he had to leave in December for Basic Training. Our courtship was brief, but we kept in touch. I flew with his family to San Antonio, TX to see him graduate. Later, I drove to Biloxi, MS and lived out of the Balmoral Inn while he was in Tech School. That May 19th (1996), he came home to Fort Mill on a weekend pass and we were married at the American Legion. Our reception lasted for 4 hours, and then I had to drive my new groom to the airport so he could make it back to base before curfew. We didn't see each other again until that September when I flew to Texas to see him graduate from his next Tech program.

In October we were given our permanent station assignment: Albuquerque, NM. While we were in NM, I attended PIMA Medical Institute and earned my RMA degree and license (Registered Medical Assistant). I wasn't pleased with the standard of care I was receiving at the base hospital, so I sought care off-base at the University of NM Hospital. It turned out that UNMH had an accredited CF care center. From that point on I was seen by Dr. James and his team.

Due to the couple of years I spent without medical care, I had a lot of catching up to do. UNMH provided me with an electric handheld percussion instrument so that I could do my own PT when home alone. They got me signed up with the CFF Services Pharmacy and started me on some "new" meds including Ultrase enzymes and ADEK vitamins, and Scandical to help me put on weight. The UNMH team were also very supportive of the idea that my husband and I wanted to try and start a family. They set us up with a genetic counselor. After a few months of educating ourselves and screening and identifying genes, we got the greenlight to try and conceive. I became pregnant within the first month of trying.

My pregnancy started out rough. I suffered from hyperemesis--throwing up all day and night for the duration of my first trimester and losing nearly 10 pounds. That may not seem like a lot to most women, but for a CF woman, that's too much (it's so hard to put the weight back on). In my 2nd trimester, I was hospitalized briefly with pneumonia. I went home with my first ever PICC line and administered IV medications at home for weeks. My O2 sats began to drop, hovering between 80-85% so I had to sleep for a number of nights with the O2 monitor attached to my finger and start using Oxygen during periods of rest and overnight.

On May 29th, 1998, our daughter was born. In the end, I had only gained 17 pounds. I was completely drained. But our daughter weighed over 7 pounds and was extremely healthy. She does not have CF, but is a carrier.

In the fall of 1999, we moved from NM back to Fort Mill, SC. I decided after having received such good care in NM, I wasn't going to settle for a GP. I got set up with a local pulmonologist, but even that took time (insurance problems, referrals, etc.). By the time I became a frequent flyer with this doctor, I realized that he still had a lot to learn about CF. He wasn't familiar with most of my treatments. A typical appointment would involve him examining me, and then me dictating to him how the prescriptions should be written out. I finally decided that it was worth the nearly 4 hour drive to be treated at a real CF clinic. It took a few months to get the pulmonologist to write up the proper referrals and such, but eventually I was able to transfer to the Medical University of South Carolina in Charleston.

There are 3 CFF sanctioned clinics in SC--one in Greenville, one in Columbia, and MUSC in Charleston. Of the 3 clinics, MUSC is the only adult CF clinic in the state, treating upwards of 85 patients and diagnosing an average of 2-3 new cases per year. I am seen by Dr. Patrick Flume and his team. I drive down every 3 months and spend the day at MUSC for clinic visits.

Unfortunately, in the last few years, I've been hospitalized many times--1/04, 3/05, 2/06, 10/07, and 1/08--for what they call "tune-ups". It's not easy, seeing as how the hospital is so far away--3 1/2 hrs, and our daughter is school-aged now. I have family who have, since our wedding, moved to the Myrtle Beach area. So they help me out as much as possible on that end, while my husband's family lives locally, and they help out on this end. Dr. Flume is sympathetic to our situation and doesn't keep me for very long (the first visit he kept me for about 12 days, in order to do as many tests as possible and have a "base line" for future comparisons). Dr. Flume usually has another PICC line inserted and I go home after about 4 or 5 days, continuing my IV meds and treatments at home for a few weeks so that I can be near my daughter.

On May 19th, 2006 we celebrated our 10 year anniversary by having another "wedding" and renewing our vows with our daughter. We had about 70 guests, lots of great food provided by family, and a karaoke DJ--it was quite a night. We even had a Star Wars 3-tier cake (laugh if you want, but consider how we spent our 9th anniversary: He and I were both interviewed by the local newspaper because we were among the most devoted SW fans in the area and we both have SW tattoos. Our anniversary fell on the release date of SW Episode III, and our photos/story/tats made the cover of the paper). My daughter and my husband are what keep me going.

Over the years I have been involved in many different types of fundraising events. When I was younger, my family would always enter the CF Bike-A-Thon on Long Island, and I won the grand prize (for most money donated/collected) quite a few years in a row. They would give a brand new 10-speed bike to the winner. After the first year, I didn't need any more bikes, so I would always trade my prize with the 2nd place winner--which was always 3rd base box-seats to a Mets game. I have been involved in Bike-A-Thons, Walk-A-Thons, Dance-A-Thons, Motorcycle "Poker Runs", and even a "Halfway to St. Paddy's Day" dinner and live music event one November.

Unlike some other states that have multiple CFF chapters, SC only has one chapter and it is located in Charleston. As a result, most of the CF fundraising endeavors take place along the coast and near the two pediatric clinics (Columbia and Greenville). Living as close as we do to the NC border, some people choose to travel up to Charlotte and participate in events there, such as the Great Strides Walk.

For the last three years, I have been the organizer/chairperson/event director for the Rock Hill GREAT STRIDES 10k Walk for CF at Cherry Park. This year also marks the 2nd Annual Sink One for CF Disc Golf Tournament presented by INNOVA Disc Golf. For more information about these events or to register, please visit my website: www.marksmanweb.com/65roses

I am in the process of completing a self-published book compiled of stories written by CF patients and their families, detailing life with CF. All of the proceeds from any books I sell directly benefit the CF Foundation.

It is my goal to make sure that every person in York County, SC knows what CF is and that we need to continue to raise awareness and fight for a cure. If you want to help, you can sponsor me in the GREAT STRIDES walk by visiting www.cff.org/great_strides/kerrimarks

If you would like to learn more about CF please visit www.cff.org

My Theme Song

2008-04-14T18:02:00.000-07:00

"Superman"

by Goldfinger

So here I am doing everything I can

holding on to what I am

pretending I'm a superman

I'm trying to keep the ground on my feet

it seems the world's falling down around me

The nights are all long

I'm singing this song to try and make

the answers more than maybe

And I'm so confused about what to do

sometimes I want to throw it all away

So here I am growing older all the time

looking older all the time

feeling younger in my mind

And here I am doing everything I can

holding on to what I am

pretending I'm a superman

I'm trying to sleep I lost count of the sheep

my mind is racing faster every minute

What could I do more

yeah I'm really not sure

I know I'm running circles but I can't quit

And I'm so confused about what to do

sometimes I want to throw it all away

Controlling everything in site

I'm feeling weak I don't feel right

you're telling me I have to change

telling me to act my age

but if all that I can do is just sit and watch time go

then I'll have to say good-bye

life's too short to watch it fly

to watch it fly

So here I am growing older all the time

looking older all the time

feeling younger in my mind

And here I am doing everything I can

holding on to what I am

pretending I'm a superman

the Debut

2008-03-27T19:34:00.000-07:00

So here it is, my first foray into the world of blogging. Not that this is my first blog; no, I've been pecking away at the keyboard for years on myspace, ranting about this and that.

I plan on using this blog to talk about my CF. Caution: I'm long-winded.

No, seriously. In recent years I've discovered that the things I do to raise awareness can have an impact on the younger CF patients and families that I come in contact with. Why shouldn't my words do the same?

Each of us living with CF have more common bonds than mere faulty genetics. Our experiences help to define us. Our weakness gives us strength. We each have special gifts, and sharing them will help to deter us from the ever constant cries of "why did this happen to me?"

I'm a true believer in the idea that everything happens for a reason. If sharing my adventures with CF positively affects even one person, then I will feel like I have done something to make a difference, however great or small.