Monday, February 28, 2011
Will and I won our final match on Sunday. I told him that if we won that we would be the only topic on this blog. We won 6-3, 4-6, 7-6 (8-6). It was a heck of a match. Game ball to Mr. Shields!!! As they say, it's not how you start, it's how you finish. We have a 1-game winning streak!!!
It only took us 6 match points to put these guys away. A win is a win though.
It only took us 6 match points to put these guys away. A win is a win though.
Friday, February 25, 2011
Before I begin, the first 2 pictures are of Ethan (the pimp) and Avery (the swimsuit model).The third picture is what happens when your aunt gives your daughter an array of dress-up clothes and you are the only "model" in the house.
I wanted to report that I'm doing very well. Things haven't been this well in a long time. Still I recognize that with my emotional issues, that it only takes one thing to happen for me to spiral out of control so I have to be on top of things.
Here are a list of the good things. We had a nice birthday dinner with Avery, Andrea's dad and his girlfriend, my parents and one of Avery's best friends. Everyone in our family is really healthy so we're blessed with that news.
I will hopefully have a deal with a publisher today or Monday which would mean publication of my new book The Drive at 35 in early 2012. I did an extensive revision this week and I feel like the book flows better than it ever has. I can't wait to put it in print and hopefully help a lot of people that deal with not only physical issues but emotional issues as well.
I'm enjoying playing tennis with my buddy Will. We may not have a winning record but it's nice driving to the ends of the earth to play matches and catch up on our lives. Will is a really good friend to have. Sunday is our last match and we will win. Yes, Will, we will win!
Softball starts in 2 weeks. I believe we have put together our best team ever. I'm looking forward to a good time this season.
I saw a couple of really good high school friends last week. We had a really nice time catching up. They are not only high school friends but they are good friends. I'm proud of both of them for all they've accomplished.
I also was able to catch up with some friends for dinner this past week. It was great to catch up and play some trivia.
Ethan is going through his terrible 2's. On the bright side, he has shown me what a good baby Avery was. Ethan is a nut but we love him and his speech continues to improve from his stroke at birth. He is truly a miracle.
We are in the midst of looking at schools for Avery. There are so many good schools out there so it's tough to decide. We have narrowed it down to a few choices. I never knew how competitive these schools were and how the assessment process works. I don't think I could get into some of these schools...now!
Avery will be at Disney with my in-laws next week and Ethan will have a few sleepovers with our nanny and while I'll miss them both very much, I look forward to getting some much deserved alone time with Andrea.
I have gotten three new speeches for the month of March so far. I'm looking forward to spreading my message of hope and determination. I also had a speech last night at Raw Love which my sister did an amazing job putting together. Thanks to Raw Denim and East Andrews for putting on a terrific event and thanks to all of the models who did a terrific job at the fashion show. Emily, please pass my blog information and contact information on to them. I love you and am proud of you! I met several new contacts including Falcons QB John Parker Wilson and also ran into an old high school friend there. Andrea and I had a terrific time.
A friend of mine started her own cupcake business. We tried them out for Avery's birthday dinner and they were amazing. Let me know if you want her information. I highly recommend her.
Don't forget to check out Emily's store in Buckhead called Raw Denim. It's a cool little boutique with some cool clothes. I'm not a fashion guru (duh!) but Emily has dressed me better of late. Try out her store. You can find Raw Denim on Facebook.
Some of you have asked how I'm dealing with the loss of Rusty. It's been about three months. I'm doing better. There are still times that I miss hearing his voice or his self-deprecating humor, but I realize that he will always be in my heart. When this trial is over, I want to focus on naming something at Wish for Wendy after him much like we did in Dr. Wolfenden's memory last year. I got to spend some quality time with Rusty's Andrea last night. She looks amazing and is doing well. My Andrea and I are both really proud of her.
That's about it for now. I hope that everyone has a good weekend. Live your dreams and love your life.
Friday, February 11, 2011
The picture enclosed is Ethan holding a poster of me as a young boy. It was shot by my Aunt Susie in the late seventies. I'm glad that Ethan will not have to spend time taking pills and doing treatments like his daddy.
As a young boy, I probably took ten pills per day, did not work out and only did treatments once a day for about an hour at the most. Things have changed as I've gotten older. I need more maintenance. Sadly, the clock has become my enemy as I spend so much time watching it to see when I can finish my treatments and get on with being a dad, a husband and a human being.
Here is my medical routine for the week:
I have to make sure to grab my 33 pills each day. Thirteen of those pills are for maintenance and the other 20 are for meals and snacks. On Mondays, Wednesdays and Fridays, I add one antibiotic per day. Also on Mondays, I take an extra pill. On Mondays and Thursdays, I take a powder called Miralax for my digestive system. So over a week's time, I take about 235 pills. If I forget my pills, I can't eat. My digestive system has issues without these pancreatic enzymes. That's why packing for trips is so nerve-wracking. The pills are primarily for my digestive system.
On months that I do my Tobi (a 35 to 40 minute inhaled treatment), I spend about 1,155 minutes of therapy per week plus six days of workouts which equal another 180 minutes. I also run in place during my Pulmozyme for another 13 minutes a day six times per week. I also have a required 20 minute break between my Pulmozyme and Tobi. In other words, between workouts and therapy, I spend about 1,515 minutes or roughly 15% of my week including sleep and my daily 20 minute breaks. I also take 2 one minute breaks in between my treatments to cough out my phlegm into the toilet. These numbers don't even factor in taking my pills, ordering my meds with our on-line pharmacy or going to doctor's appointments. My treatments and workouts are primarily to help my lungs. Due to the fact that I have CF, I cough a lot more than the average person but coughing is actually necessary for me to get rid of the phlegm in my lungs. I need to do treatments and workouts to help me get rid of the mucous.
In short, coughing is good for someone with CF.
My daily routine features doing nasal treatments for five minutes (clears my sinuses), working out for 30 minutes, administering Hypertonic Saline treatment, Running in Place (Running for about 13 of the 20 minutes) and doing my Vest for a total of 20 minutes. Then I take a coughing break and then it's on to my Pulmozyme and Vest for 20 minutes, another cough break, the 20 minute required break between Pulmozyme and Tobi, and then 35 to 40 minutes of Tobi. On months without Tobi, I can remove 840 minutes from this total (60 min x 2 times daily x 7 days). I guess you understand now why most people with CF do not have full time jobs. I'm proud of the fact that I have one and that I have been successful achieving my goals in my profession.
Fitting in the time to be a parent, husband, philanthropist, author, full-time worker and having my own life is not easy but it's worth it. My family comes first. Sadly it took me some time to see that, but now I cannot see it any other way.
It's funny how my Tobi routine is the same every month.
Week 1: Bring it on!
I do my Tobi early at night and usually am finished by 11:30 p.m. at the latest. I'm up at 5:00 a.m. for my morning treatments and am done by 7am.
Weeks 2 & 3: Return of the Nebulizer Driver!
I fall asleep before and during most of my treatments and wait till the last minute to do them. I'm fortunate to have a wife who is willing to wake me when I pass out in the bed or on the couch. I wake up late because of that. I'm up at 6:30 a.m. for my morning treatments and do my evening treatments at 10:30 p.m. and after falling asleep several times, I'm usually done at 2:00 to 2:30 a.m. I do my TOBI in the car in the mornings because of the late wake up.
Week 4: The Finish Line
I can see the finish line now. I tend to do my treatments earlier most days and wake up a bit earlier most mornings. I'm up at 5:45 a.m. and finish my treatments around 7:45 a.m. I do my treatments around 10:00 p.m. and finish around midnight. I still do my Tobi treatments in the car for the most part.
My last day of Tobi is this Sunday and I can't wait.
So that's my CF routine and the scary thing is that there are a lot of patients who do more than me. So when you donate to the Cystic Fibrosis Foundation or the Wish for Wendy Foundation, please know that your gift will go a long way towards making our days a lot easier.
Please help us make CF stand for Cure Found so patients like myself can have it stand for Cough Free or at least Clock Friendly!
I hope everyone is having a good week.
Friday, February 4, 2011
I was going through the 2010 Wish pictures the other day when I found this one. It's a picture of a batter with his third base coach in the background. I'm the batter but that's no ordinary third base coach. That was my friend Rusty twelve days before he was murdered. This picture tells a thousand words. I always felt Rusty was looking after me. I looked up to him. Rusty will always be my third base coach and I will always try to hit a homerun in life in his memory.
I'm finishing my final week of Tobi this week. In the interim, I have found a great way to stay awake while doing it. I have gotten into Wii sports and play about 40 minutes of tennis, baseball and bowling during my treatments. Still I'm sure people on Buford Highway will miss the Nebulizer Driver. Attached is a picture of me parked in front of a light doing my Tobi. Doing Tobi in the car every morning allows me an extra 40 minutes to sleep.
Last week was exceptionally busy and I got some good news from my doctor that my blood pressure, cholesterol and weight looked great. I'm between 179 and 180 pounds, a loss of nearly 20 pounds since September. I do not intend to lose anymore but plan to stay around 180 pounds. 165 pounds is the ideal weight for my height but I have to factor in CF and therefore can't lose anymore weight. I continue to work out with heavy weights and jokingly nicknamed my home gym "AL Fitness."
I'm excited for my sister's fashion show later this month to benefit Wish for Wendy. Raw Denim has done pretty well thus far but be sure to check it out if you haven't gone. If you have gone, please check it out again.
I'm also looking forward to my little girl's 5th birthday ten days from today. It's hard to believe Avery's already turning 5 years old! She has me wrapped around her little finger, but don't tell her. I'll spring that upon her when she leaves the nest.
I found out that my 20th high school reunion is in June. Part of me is really looking forward to seeing everyone. On the other hand, I'm a little nervous as most of these people I haven't seen in two decades. I had a lot of friends but I wasn't in the "cool" crowd. I know we're beyond the cool crowd now, but I felt like I greatly underachieved in high school with my social skills and my academic work. I matured much later in life. Still I do talk to a few of my former classmates today and there is definitely a different relationship than there was in school. Maybe in honor of the occasion, I'll grow out the mullet I tried for part of my 9th grade year and throw on my old Led Zepplin T-shirt and see what kind of response I get. My guess is Andrea will want to hang out at another table. Alright, I'll wear slacks and a nice shirt but I at least hope they're serving those egg roll Hors d'œuvres and not those awful corndogs they served on "What animal did these get made with" Wednesdays at the cafeteria.
Anyway, I hope everyone is healthy and happy.
Wednesday, February 2, 2011
Nothing Can Be Accomplished Without Dreams
I was once the little boy who lived in a bubble,
Now I have to face the doctors when my health is in trouble.
I miss the days when I didn't concern myself with death,
Now it's as much a part of my day as stopping to take a breath.
Days pass, I wish they would wait,
But alas, I'm on year thirty-eight.
Some days I wish I could just hit rewind,
Memories of no responsibility enter my mind.
My hair was blonde, then brown, now gray,
My youth grows more distant every day.
A tragedy was once a report card full of C's,
Now it's losing friends to murder or disease.
A decade ago I ran with the Olympic torch,
But my mind still wandered to those old days on my porch.
I sat with my best friend Howard then, the dog with just one trick,
He could turn my day from bad to good with just a single lick.
I miss my days on West Fontainebleau,
Going to school at Kingsley and Mt. Vernon too.
I miss the days when Van Halen ruled,
And seeing my friends at the neighborhood pool.
I remember thinking I would never be on my own,
I'd be living with my parents until I was full grown.
Finally that changed when I was sixteen,
With the arrival of my therapy machine.
I got to go to college where I learned a lot about me,
Confidence was an issue along with irresponsibility.
I wish I'd been stronger and had more fun,
But that part of my life is already done.
That's not to say I have many regrets,
I have a beautiful family and have loved all of my pets.
Statistics told me that I wouldn't see thirteen,
And having children would be a pipe dream.
Life is fair; that much I know,
I just don't understand why we all have to go.
What happens after life, I question it every day.
Do things just turn to black or are we going to be okay?
I tell my kids to always treat people fair,
Yet when it comes to good or bad, death doesn't care.
God has his reasons, he knows our outcome from birth,
He must have bigger things for us once we leave earth.
That's the only explanation I could come up with why,
So many amazing young people in this world unexplicitly die.
That's why we must make the most of our lives,
Appreciate the kisses, hugs and high fives.
I sometimes ponder if I made the right choices,
Did I listen to myself or to too many uncaring voices?
Peer pressure was an issue for me,
I had no idea what I wanted to be.
Sometimes I think about how I will be remembered,
To my parents as their miracle baby who was born one September.
To my kids as a dad who loved to make them laugh,
To my wife who I was blessed to have as my better half.
To my sister, who I wanted to give sage advice,
To my friends, who I wanted to treat them so nice.
Will I be remembered for what I did to combat CF,
Though odds are this disease will take my last breath.
Each day I look in the mirror and it's an older man I see,
I miss the kid whose only concern was watching the Braves on TV.
It's hard to believe that I've been out of high school for twenty,
For the last fifteen years I've been in the real world earning money.
I'm 37 years old and received awards for displaying bravery,
Yet my two biggest trophies are my Ethan and my Avery.
I was given a sentence of twelve years when I arrived,
Yet thirty-seven years later I am still alive.
Why am I here waiting for my thirty-eighth birthday cake?
Yet others have gone; I'm not sure how much more I can take.
I miss my friends, I miss my youth,
I miss dreams of becoming the next Babe Ruth.
I miss feeling I could do no wrong,
I miss feeling that I was too damn strong.
I used to feel invincible but I've seen serious regression,
My cystic fibrosis has gotten stronger and so has my depression.
I'm a better person for having the people in my life,
From hard working parents to a beautiful loving wife.
Each day with me is not always a piece of cake,
Sometimes I need help with the choices that I make.
Along with the positive things, I've made my share of mistakes,
Some resembled tremors, while others were more like earthquakes.
I could recount my poor decisions, but the list is too long,
Certainly I've learned more in life from the things I've done wrong.
Failing doesn't make you a loser, you are defined by your reaction,
Get back up on your feet and avoid any distraction.
Dreams aren't meant to disappoint, they're meant to show us hope,
Don't give up on the possibilities, that's not a healthy way to cope.
I look back at the doctors and now I can laugh,
My life is literally a book, not the predicted paragraph.
I got to have children, I got the joy of experiencing my own wedding,
If I'd bet on those things when I was little, I wonder what odds I'd be getting.
Sometimes I get down when I think of my late sister,
I never got to hug her; I never even kissed her.
While she's a source of my sadness, she also motivates me year round,
To beat this disease in her memory and help CF stand for Cure Found.
I've run the Peachtree Road Race fourteen straight years,
I got to compete in a triathlon and face my biggest fears.
I've been able to write several books and help those in need,
I've been able to speak to others, I've had the chance to lead.
I've lived in fear for most of my life,
My mind has lived in constant strife.
But I'm stronger today than I've ever been before,
And I'm far from being done, I have dreams I can't ignore.
In life, there is good luck and in life there is bad,
There are times to be happy and times to be sad.
Remember the good times but don't dwell on the present,
Follow those rules and your future will be pleasant.
Life is full of tough times but it also has its glory,
I think I've shown you that by telling my true story.
Thirty-seven years ago, my doctors feared I was in trouble,
But if it weren't for having dreams, I'd still be stuck in that bubble.
The first picture was one of me during my youth. The second is this year's Foundation team. I'm on the far left and my good friend the late Rusty Sneiderman was on the far right wearing his famous Cleveland Indians hat. We miss him very much.