Being Brave

brave
[brāv]

ADJECTIVE
ready to face and endure danger or pain; showing courage:
"a brave soldier" · [more]

synonyms: courageous · valiant · valorous · intrepid · heroic · [more]

That's Oxford's definition of "brave." Brave means different things to different people. To me, bravery is sort of like emotional adrenaline. We don't use it until the situation absolutely calls for it. Some think being brave means masking your fears. Others think it means managing your fears. Then there are even others that think being brave is dependent on the odds one faces. I'm not sure how I would define it.



I couldn't have said it better.

As another doctor's appointment rapidly approaches on Thursday, I have the usual fears. I always am a bit nervous but it certainly doesn't help that I'm on antibiotics for a cough I can't seem to shake while just finishing up with a sinus infection along with medication side effects (vertigo) that I've dealt with for a few months. Add to that, several people that I've known have died, each of them younger than me thanks to this monster of a disease.

I can tell depression is setting in. I find myself often times wanting to sleep or just sit outside and watch my dogs walk around. My at-home PFT tests are down. Today I found myself looking at old pictures of better moments. The last few days I find myself wishing nightfall would come sooner so I can just put my head on a pillow and pass out and not feel guilty about it like I do when I pass out during the day. Of course after a 2 month drought, mother nature picked a fine time to start raining. Depression and rain for me go together like peanut butter and jelly. "Terms of Endearment" better not be the HBO afternoon movie!



Depression is absolutely overwhelming.

There are days when I'm tired and don't want to work out especially recently. There are moments when I feel like my body is breaking down. It's days like these that I have to fight the apathy and find the determination to battle. I have to finish my workout no matter how difficult. I have to go to the gym no matter how much it pains me or no matter how many odd looks I get from coughing. I have to do all of my treatments regardless of how tired I am. I have to be, well, brave.

I'm often asked why I talk so much about cystic fibrosis. Think about this for a second. I do over two hours of treatments a day. That's more time than I spend eating, exercising or even just relaxing. I take 40 pills a day. So even when I have a break from my therapy, I need enzymes in order to eat. You still wonder why my mind constantly thinks about cystic fibrosis? It's always around me. Take my kids. I love them very much but the only way they could be conceived was through IVF which my wife and I had to do because of...you guessed it, cystic fibrosis. Traveling anywhere fun still requires me to pack up two separate bags of medication and therapy equipment. And every 3 months I have to deal with the anxiety of heading to another doctor's appointment that determines whether we keep the course or hospitalize me. No wonder there are days that I feel I'm going insane.

Cystic fibrosis is as difficult a disease as you'll find. I'm at risk for so many things besides a lung transplant. The list is plentiful: sinusitis, osteoporosis, infertility, certain forms of cancer, pancreatitis, CF-related diabetes (CFRD) and liver disease. CF is like the WEB MD cocktail. I'm overwhelmed just by writing about it. And I take more pills than people twice my age. I take so many meds that if I had to write them all down I'd probably develop carpel tunnel.

I talk so much about cystic fibrosis because if I bottled it up inside I would lose it. I know from experience. In college, I lost it. As a grown man in my thirties, I lost it. If I didn't have a psychiatrist, a psychologist, a sponsor and one of the most amazing women in the world who accepted my marriage proposal (Andrea, that's you just to be clear), I don't think I'd ever find my sanity.

Yet still, there's a part of me that won't surrender to cystic fibrosis. It's that same part that keeps me focused on fitness on the bad days and amused by a joke on the even worse ones.

I'm scared about Thursday. The crazy thing is I have no idea how it will go. There are appointments I go in feeling like a champ and leaving as if I have a week to live because the results sucked. I have appointments where I'm shocked how great everything looked because I felt like crap. That's the nature of the beast.

The good news is that I can tell that the sinus infection has gotten much better. The vertigo seems to be near the end as well. Since starting a new antibiotic, the cough has gotten better though it's still present when I run. The key for me is to continue to work out at the highest level and run like there is no tomorrow. That is not just my goal till Thursday...that is my goal forever.

Look. Not every appointment is going to be a great one. I wish it was. Some appointments test a CF patient both mentally and physically. I wish bad appointments were like the ones when I was little when my biggest concern was whether they had the cherry-flavored lollipops available at the checkout counter.

I'm going in there tomorrow knowing that I'm working my tail off and doing my treatments and taking my pills as asked. I even go above and beyond in some cases. I literally can't do much more. If my numbers are down as expected, so be it. The important thing is that I don't feel horrible. I just know that I have an infection. It's up to the doctors to give me the right meds to get better. The ball is in their court.

While CF does scare me, my super-competitive side sees things differently. It's that part of me that wants the odds stacked against me. It wants to be counted out by everyone. It loves the role of the underdog, a role I've had since the day I was born. It's crazy but I think that side of me has probably saved my life and certainly my sanity.

No matter how scary things get, my goal is to keep a positive attitude and kick CF's ass.

I guess that's my definition of being brave.



Tomorrow CF will stand for Courage Found.

Live your dreams and love your life.

Andy

The Many Roles of Cystic Fibrosis

Dear cystic fibrosis,

You have played many roles in my life. Each one has played a pivotal role in the person that I have become.

10. Thief – You stole my childhood away. That’s the one thing that every person holds sacred. While most kids were dreaming of what they wanted to be in life, I was worried I would never live long enough to have a life. On the bright side, I realized at an early age what was truly important.



The face of a child with no childhood

9. Captor – While most people wake up and are free to do almost anything, I have been forced into a monotonous routine for the last 43 years of taking enzymes, administering therapy and inhaling aerosols. On the positive side, you have taught me how to be regimented and that vacation days are only for corporate America.

8. Difference-Maker – You made me feel alienated. I couldn’t go certain places like summer camp or overnight trips without my parents when I was younger. When I was older, I couldn't have kids like everyone else nor could I just pack a toothbrush and clothes when I traveled and be done with it. I've been wearing nebulizer masks since I first put on a diaper. The positive spin is that you turned me into a leader. When you’re different you have two choices. You can cry about it or make the most of it. The first two decades plus of my life, I did the former. I’m proud to say I now practice the latter.



I prefer the term "unique" to the word "different."

7. Enemy – I’ve hated you from my 8th year on when I learned who you were. On the positive side, it has allowed me to put all of my anger into one thing and to use those emotions to fight harder in the gym, raise money to defeat you and to not sweat the small stuff in life except possibly the continuous demise of my sports teams.

6. Coach – You have been yelling in my ear from day one. On the bright side, I can hear you now. Without you, I would not put such an emphasis in fitness and competing in sports. I also believe your coaching has helped me to see that I love to help others who may be in the same predicament as me while fighting a terminal disease. I've also learned to transfer those skills into my own coaching which is something I really enjoy in kids’ sports especially with my own children.



Making a difference in someone else's life makes a big difference in mine.

5. Excuse/Motivator - From my mom sending notes in gym class to me not doing something because I blamed you, you have become the ultimate excuse. I have now reversed that into you becoming the ultimate motivator. Whenever people or statistics tell me I can't do something because of you, that pushes me to try even harder. I've learned to relish the role of the underdog.



January 2016



November 2016


4. Competitor – I always knew that you didn’t take a day off. Now I look at that bit of information as a positive. I will work just as hard every day. Neither of us has had a vacation day in 43 plus years.

3. Comic relief – For years, just the mention of you scared me. You were the elephant in the room. Now I literally tell jokes about you. If I can laugh at my own chronic disease, I can do anything. Laughter cures most things. I know that now thanks to you.



Laughter truly is the best medicine.

2. Killer – I know that most people grow up having no idea how they will die. I’ve known for several decades but I’m not afraid anymore. In a way, it takes the surprise out of things and I've never liked surprises. To be honest, I kind of think I may kill you first.

1. Realist – You’ve taught me that life isn’t always fair and though I didn’t like learning that lesson, it has taught me some invaluable things. Each of us is dealt different cards but it’s how we use those cards that matters. Anger and sadness are normal emotions but don’t harp on them. Take advantage of celebratory days and just accept the fact that not all days will be full of sunshine and rainbows. Just be grateful every day that you get.

For years...

I wanted to blame you, cystic fibrosis. Now, however; I want to thank you. I wouldn’t be the person I am without you and I’ve come to learn over many years that I really like that guy. By no means does this signify that I like you but what it does mean is that I am at peace with you. It also doesn’t mean that I still don’t want to kick you in the rear end every opportunity I get but I’ve accepted the fact that you’ll get a few punches in too. Essentially I may not win every battle but I do intend to win the war.

I know you don’t hear this often but “Thank you cystic fibrosis.”

Without “you,” there’d be no “me.”



I am who I am because of cystic fibrosis.

Live your dreams and love your life.

Andy

25 Common Misconceptions Regarding Cystic Fibrosis

I make a lot of speeches outside of the CF community and when I do, I ask one simple question. "What is cystic fibrosis?" The answer I generally get is "a lung disease." While that's not totally false, it's not completely true either. That's like saying that I am a human being. There is so much more to it.



So without further adieu, here are 25 common misconceptions regarding cystic fibrosis.

25. Cystic fibrosis and depression are mutually exclusive.

False. People with cystic fibrosis and really any sort of chronic disease are at a higher risk for depression. In fact, CF clinics are now screening patients for mental illnesses like depression and anxiety.

24. Cystic fibrosis is just a lung disease.

Somewhat false. It is a lung disease but it also affects a lot of other parts of the body including the sinuses, digestive system, male reproductive system and bone density. It increases risk for certain forms of cancer, male infertility, osteoporosis, liver disease, diabetes (discussed later)and sinusitis. It does not affect one's sense of humor though my family might argue that point.

23. Cystic fibrosis and asthma are the same thing.

False. Want to offend someone with cystic fibrosis? Tell that person that asthma and CF are the same. They're not. First off, CF is much more life-threatening and secondly as already mentioned CF affects more than just the lungs.

22. People with cystic fibrosis meet in person all the time to discuss their disease because CF is not contagious.

Somewhat false. It's recommended that patients remain at least 6 feet apart because of the danger of bacterial cross-contamination. CF patients are NOT contagious to people who DO NOT have the disease but we can pass deadly bacterial infections to each other. It's one of the saddest and most difficult things to understand about CF.

21. CF is contagious because some people get it later.

False. As mentioned earlier, CF is not contagious other than passing bacterial infections from one patient to another. CF is a genetic disease meaning that even if you were diagnosed at 45 years old, you've still had it the whole time. Sometimes people are misdiagnosed or their symptoms were not bad enough to get checked. That's why newborn screening is so important.

20. Cystic fibrosis is difficult but not deadly.

False unfortunately. More than one patient a day dies from CF and more than nine a week. CF patients are also more prone than the average person because of our "crappy" lungs to get lung infections like pneumonia or bronchitis and some patients have even died as a result of these infections. Still the life expectancy was in the teens when I was born and now hovers around 40. In other words, we are making serious progress.

19. Since the median life expectancy is 40, people with CF don't live to 41.

False. In fact, I'm 43. Median life expectancy means pretty much an average. So some patients unfortunately died as children while others have lived into their sixties and seventies. When I was growing up people weren't even living through high school and now some patients have full-time jobs, significant others and even children. As I continue to say, "It's a great time to have cystic fibrosis."

18. 98% of males with cystic fibrosis cannot have children because they are too sick.

False. It's because males with CF including myself do not have a fully formed vas deferens which is the bridge that carries mature semen to the urethra.

17. It's easy to recognize someone with cystic fibrosis.

False. Cystic fibrosis is an invisible disease because it's difficult to tell if someone has it unless you're with them when many of them do their two hour daily treatments/therapies to remove thick mucous and allow airway clearance. It is also difficult to witness them taking their 20 to 30 enzymes each day to help with digestion. Many do both. We are kind of stealth when it comes to taking our meds so if you're not paying attention, you probably won't notice. Sometimes CF can be revealed by seeing a person's IV wires exposed as they need these to receive IV antibiotics or you might see their oxygen tanks which provide assistance to breathe for those whose lung function is severely depleted. CF patients also generally have doctor's appointments every 3 months so if you're a stalker and you follow that person to the doctor at least 4 times a year, that might be an indication that they have CF. Also, if you're a stalker, please get help.

16. Most CF patients are diagnosed because of their cough.

False, CF patients can be diagnosed through blood tests or genetic tests but most commonly are diagnosed with a sweat test that determines how much salt is in their sweat. Sweat tests are generally about 98% accurate.

15. People with CF have a tendency to be licked by dogs because dogs sense that we are great animal lovers.

False. Though I know many of us do love animals like dogs, the truth is that the faulty CFTR or Cystic Fibrosis Transmembrane Reactor will not allow chloride to reenter the cells. Sodium is therefore also blocked since it travels with chloride. In people with CF, salt then travels to the skin's surface with water and is not reabsorbed therefore making our skin really salty and also meaning we can dehydrate very easily. That's why the sweat test is used to diagnose many of us. Animals specifically dogs tend to love the salty taste. If a CF patient allows, you can taste the salt too. If not, you'll have to grab a Margarita.

14. There is no one famous with CF.

False. Occasionally CF can stand for Celebrity Found. Frederic Chopin, the legendary pianist, is rumored to have CF. Other CF celebs include Alice Martineau, a famous singer from the UK, Nathan Charles, a professional rugby player from Australia and Frankie Abernathy, star of MTV's Real World. Many celebrity families have also been struck with CF including NPR's Frank Deford, pro football quarterback Boomer Esiason, pro football quarterback Joe Flacco and legendary singer Celine Dion.

13. CFRD (Cystic Fibrosis Related Diabetes) is the same thing as Type 1 Diabetes.

False. Patients with CFRD typically experience lung function decline, weight loss and an increased rate of death. CFRD does involve severe insulin deficiency but it's not as complete as Type 1 diabetes. CFRD affects 20% of adolescents and 40 to 50% of adults with CF which are much higher percentages than Type 1 diabetes found in people without CF.

12. Everyone's CF symptoms are the same.

False. CF patients are almost always different. Some are pancreatic sufficient and don't need enzymes and some are not which many times is revealed with CFRD mentioned earlier. Some don't experience as many lung issues while others do. With lung issues comes airway clearance like the vest, postural drainage or the acapella. Not only does each of us have different symptoms but we use different meds too. There are different brands of treatments and medications. Very rarely do you find two people with the same routine.

11. Other than airway clearance and taking enzymes, there is no way to improve your health with CF.

False. Studies have shown that better nutrition and more exercise can lead to improvement but obviously airway clearance and/or enzymes should always be the priority.

10. Caucasians are the only people with cystic fibrosis.

False. One in 31 Americans are symptomless carriers of CF. Caucasians are the most common carriers with a 1 in 29 rate. The other carriers include 1 in 46 Hispanic Americans, 1 in 65 African Americans and 1 in 90 Asian-Americans. The number of people who have CF is 1 in 2,500 - 3,500 Caucasian Americans, 1 in 4,000 - 10,000 Hispanic Americans, 1 in 15,000 - 20,000 African-Americans and 1 in 100,000 Asian Americans. 1 in 25 to 27 Ashkenazi (European descent) Jews are also carriers of CF. So while not widely discussed, CF is pretty diverse.

9. The only way to have cystic fibrosis is if at least one of the parents has CF.

False. For a child to have CF, both parents must be CF carriers. Neither has to actually have cystic fibrosis. If both have the gene, there is a one in four chance that the child will have CF, a 2 and 4 chance that the child will be a carrier but not have CF and a 1 in 4 chance that the child will neither be a carrier nor have CF.

8. The U.S. has the highest CF patients per capita.

False. The "winner" is Ireland. While there are about 30,000 people in the US with CF, there are another 40,000 to 50,000 people around the world who fight this disease.

7. Insurance covers all drugs and treatments for cystic fibrosis.

False. Many people wish this was true but because of the cost, things like the vest and breakthrough drugs like Orkambi and Kalydeco are not approved by every insurance company especially in places outside of the United States. Several countries still not approve several drugs/therapy devices because of the cost verses the amount of perceived improvement these methods have on a CF patient's health. We continue to fight though.

6. The term 65 Roses came from the fact that the oldest CF patient was a 65 year old woman named Rose.

False. The term actually came from a kid who was trying to say "cystic fibrosis" to his mom but mispronounced it "sixty-five roses." The name has stuck. Just glad he didn't say 60 live roaches.

5. People with cystic fibrosis experience clubbing which means they get the urge to go out a lot.

False. Not that type of clubbing. Due to lack of oxygen, we experience something called clubbing of the fingers and toes which means the ends get wider and the nails tend to curve downward.

4. Cystic fibrosis is always capitalized.

False. This one is for the grammar police. When writing about cystic fibrosis, make sure not to capitalize it unless you're talking about something like the Cystic Fibrosis Foundation. Diseases like cystic fibrosis, cancer and diabetes are not capitalized. The only diseases that are capitalized are named after people like Lou Gehrig's disease, Lyme Disease or Alzheimer's disease.

3. Being that CF affects only 30,000 people in the US, there are not any foundations around.

False. The Cystic Fibrosis Foundation has approximately 70 chapters around the country. CF is denoted by the purple ribbon and even has its own awareness month. That would be May. One in 31 Americans are symptomless carriers or 10 million people so awareness is definitely needed. In fact, approximately 1,000 new cases of cystic fibrosis are diagnosed annually. Outside the US, there are other big CF organizations including the CF Trust in Europe and Cystic Fibrosis Australia in, well I think you can figure that out.

2. Having a lung transplant cures CF.

False. Sadly there is no cure and since a CF patient's cells still have the disease, having a transplant doesn't remove it. It just alleviates many of the lung problems that a person is having.

1. Approximately 100 genetic mutations of cystic fibrosis are tested when a person is being screened so that's all the mutations there are.

False. There are more than 1,700 cystic fibrosis genetic mutations but the top 100 are the most common and therefore are the ones that are usually screened.

In closing...

So hopefully you know a lot more about cystic fibrosis than you did before you read this post. Cystic fibrosis is quite the puzzle but it's slowly being solved by medical science. Here's to hoping that someday soon the statement "There is no cure for cystic fibrosis" is another misconception about CF.

Live your dreams & love your life.

Andy

My battle with mental illness

All of you know I'm one of the biggest Braves fans you'll ever find. I've watched all or part of almost every Braves game over the last 35 years. I've been to both the last games at Turner Field and Fulton County Stadium. I took my wife on our first date, celebrated my 30th birthday and even shamefully observed religious holidays all at a Braves game. I even drove from Athens, Georgia to Fulton County Stadium on an October eve in 1995 just to watch the Atlanta Braves win their first and only World Series.

So you can only imagine where I was 24 years ago when with two outs and the tying run on third base and the winning run on second base, little-known Francisco Cabrera came to the plate and knocked in both runs including a sliding Sid Bream with a game-winning single sending the Braves to the 1992 World Series.



Braves fans erupted!!! At least most of them did.

Many consider Cabrera's hit to be the greatest moment in Atlanta Braves history. Most of you knew that. But you probably did not know where I was that night.

I was a sophomore at the University of Georgia but I wasn't celebrating downtown with my friends the moment Bream scored the game-winning run. I wasn't jumping up and down in my fraternity house. To be honest, I wasn't celebrating anywhere.

On October 14, 1992, as my Braves celebrated the greatest moment in their history, I lied in bed, sweating, often throwing up mucus and wishing I was dead. I'd stopped doing my treatments and taking my meds weeks ago. I watched the end of the game from the mucus-entrenched sofa of my pitch black room. Upon its completion, rather than joining my friends in the celebration of a moment we had never seen before and would probably never see again, I shut off the television and resumed my feelings of hate and despair.

That's how overwhelming depression can be.



Mental illness never takes a day off.

Some people wonder if being sad because something bad happened to them is the same thing as depression. To me, it's not the same. That's normal. Depression at least in my eyes is when the sadness lasts too long and/or the cause of the depressive state is unknown. Sometimes I just get really sad. The trigger could be something as simple as boredom. I've had to learn to cope with depression and tell my family and a professional when the feelings are too difficult for me alone to handle. I also have to avoid feeling like a failure for asking for help.



If it was as simple as "just getting over it," I would.

I also suffer from anxiety. How do you know if you have a problem with this condition? I'm not a psychiatrist but I'd say when something bothers you more and for a longer period of time than it would for the "average" person, you might have an issue with anxiety. If I forget to close my garage door one day, I'll beat myself up over it for weeks even if nothing bad came of it. I'll even drive back to my house on certain days just to make sure I closed it this time. I've had to learn to calm my nerves by thinking of the worst case scenario of leaving something like the garage door open and being able to deal with those circumstances.



No one wants to be in the mind of someone suffering from anxiety.

There will never be a time when I think that depression or for that matter anxiety is gone from my life because of that moment in 1992. If my team advancing to the World Series on a game-ending hit couldn't bring me happiness, nothing could. Mental illness stole that moment from me. In my lifetime, it's stolen many moments. It's imperative that I'm cognizant of those harsh memories anytime depression or anxiety rears its ugly head.

Mental illness is not an excuse. It's not something you just "get over." It's not just the result of a bad day. Mental illness is real. It's as real as cancer. It's as real as cystic fibrosis. It's as real as AIDS.



People with mental illness need as much support as someone with a physical illness. Take it from someone who deals with both.

If you are suffering from mental illness, please get help. Just remember that you're not weak because you asked for help. It beats the alternative of staying silent and corrupting your mind.

I continue to battle depression and anxiety everyday and that will never change. I've even been an outpatient at a mental institution and take antidepressants. I see both a psychiatrist and a psychologist. I have my very own sponsor. It's not always easy to fight the inner demons in my head but it's always worth it because of the love I have for my wife, my children, my parents, my sister, my family and my friends. I've let them down before and I don't plan to let them down again.

To those of you losing the battle, I'm thinking of you. To those of you getting help, I'm proud of you. And to those of you who think that no one you know has these sort of problems, tell that to the roughly 450 million people in the world that will be affected by mental or neurological disorders in their lifetime.

One million people commit suicide each year and for every person that falls prey to suicide there are 20 more who attempt it.



If "snapping out of it" is all we needed, don't you think we'd select that option rather than battling fits of sadness everyday?

Mental illness isn't going away but it can be managed.

If you need help, please get it.

I've been fortunate to meet people who have taught me invaluable coping skills that have allowed me to savor the special moments in my life.

Don't let mental illness steal those special moments from you. There are already too few of them.

Sincerely,

Andy Lipman...a warrior in the battle against depression and anxiety

A letter to my 8 year old self on my 43rd birthday

Dear Andy,

Things kind of suck right now, huh? The book said you wouldn’t live to see your 25th birthday, doctors aren’t exactly predicting you’ll live much longer and you’re coughing up a storm most every day. That’s the last bit of negativity you’ll hear from me. I’m here to tell you some things.

1. One, things do get better and for a time, they’ll get worse. What’s important is that you hang in there during the bad days and celebrate the good ones.

2. Don’t get too wrapped up in statistics including that encyclopedia. Predictions are often wrong but it’s up to you to do everything in your power to prove them wrong. You’re a lot stronger than you think.

3. You need to start working out and running. Those two things alone will add years to your life.

4. Don’t blame everyone for your problems. There’s only one person you can blame in this world and you see him every day in the mirror. Blame, though, is not something in which you need to focus.

5. At 16, you’ll finally gain independence from cystic fibrosis and have the freedom to go to college just from one device. It’s not a car. Let’s just say the “vest” has yet to come.

6. College is going to be tough but eventually you’re going to figure out that you weren’t given cystic fibrosis so you could have a shortened life. You’ll see that this disease has secretly given you strength, passion and opportunities you would never have without it.

7. Wendy is never too far away. One day you’ll figure out a way to pay her back for visiting you in your dreams and giving you hope. Oh yeah, by the way, that girl in the dreams…that’s her.

8. You’re going to be told that having children is an impossibility. There are no impossibilities though, Andy, with perhaps the exception of any of your sports franchises winning anything of significance.

9. Oh yeah, you may dabble in standup comedy.

10. Four years from now your parents will surprise you with some really good news. You will be blessed with an addition to your family who may star in a reality TV show one day. You don’t know what reality TV is so let’s not worry about it right now.

11. In less than a decade, doctors will find the CF gene. Don’t get too excited as it doesn’t mean a cure is within reach but it is a good starting point.

12. You’re going to be invited to a party a few years after college. Even though you won’t be in the mood, you’ll need to go. That’s where you meet that special someone. Oh, and this special someone is an even stronger fighter than you. And she laughs at your jokes. That’s huge!

13. Talk to Nana Rose. You need to know how amazing she is and what’s she been through. It will give you a feeling of gratitude for all that you have.

14. Don’t just get stronger for you. Help people who need that same attitude. Wendy is helping you. You need to help others.

15. Don’t let negativity creep into your life. If there are people out there that poison you with it, kick them to the curb.

16. I know you idolize Superman but truth be told you don’t need a cape to be a role model.

17. You can have children. It may not be the way you want to have them but you can have them. All I ask is that you name at least one after a Braves pitcher.

18. Uncle Bobby may be tough on you now but it’s all part of a worthwhile strategy.

19. In college and beyond, you should start playing softball. The sport will change your life in more ways than you can ever imagine.

20. You’re an addict. I want to be the one to tell you. Don’t get too low on bad things and too high on good ones. That’s how you’ll learn to cope.

21. Take advantage of having Howard in your life. Dogs are truly man’s best friend and you have a damn good one.

22. If you ever want to write a song about your nebulizer, do it. Oh, and by the way, you still don’t have any musical talent whatsoever.

23. A few non-CF notes: At the risk of insider trading, don’t buy Enron stock. Don’t get too wrapped up in Milli Vanilli. Something called a GPS will cure your lack of direction sense. Y2K is a hoax.

24. Don’t get too concerned about the pulmonary function test (PFT). Some appointments it will suck. Others it will be great. It shouldn’t determine your mindset or your effort the moment you leave the hospital.

25. And finally, if you give it everything you have, you’ll live long past 25. You’ll even have grey hair. You’ll have 2 children and an amazing wife. And you will create a legacy. Oh and one other thing, you will kick the crap out of cystic fibrosis.

Now get some sleep because dad is going to introduce you to baseball in the morning.
Love,
You at 43

The Big 4-3!

Today is my 43rd birthday and you can’t understand how grateful I am for getting this far. I know that I wasn’t supposed to be here today. In fact, I wasn’t supposed to be here 5 years ago, 10 or even 20. Furthermore, I wasn’t supposed to get married, have children or sport a head of grey. I am proud to say that I’ve accomplished all three.



Every grey hair is an accomplishment

Thirty-five years ago I was writing a book report on Christopher Columbus when I had my first true encounter with cystic fibrosis. According to what I read, I would be fortunate just to hit 25 years of age. That day I realized that I was an underdog and I'd be lying if I said that I cherished the role. I contemplated giving up that day and it wasn't the last time. As anyone with a chronic disease will tell you, it's never easy. I’ve hit rock bottom on plenty of occasions and know that while the lowest point is not somewhere I want to reside, it is a place that I can wallow for a little bit, calculate my next move and begin a comeback. It's taken many years but I’ve finally learned to use the role of underdog as a positive.



An underdog with bite

Doctors can measure my lungs, my sinuses and my digestive system but they cannot and will not measure my heart. I know that I probably should feel like life gave me a bad hand but after learning about my sister's fate, I think it has actually been quite fair to me. Outsiders and those first diagnosed with a chronic disease may see it as a curse but for many like myself who have lived with it all of our lives, we have learned to see it as more of a blessing. Yes, cystic fibrosis is responsible for weakening my lungs and pancreas and most likely shortening my life, but it also has strengthened my appreciation for life, my efforts regarding my health and my desire to give back to others.

In many ways, cystic fibrosis, the disease that will someday most likely take my life, is probably responsible for saving it.



Thanks CF

My journey has been a long one but 43 years later I can honestly say it has also been a blessed one. I have an amazing wife, two wonderful children and an amazing family and friends. Thank you everyone for the birthday wishes. And while we treat birthdays as special occasions, please remember that the other 364 days are pretty special too.





I am truly blessed

Live your dreams and love your life.

Best Wishes,

Andy

The Big 4-3!

Today is my 43rd birthday and you can’t understand how grateful I am for getting this far. I know that I wasn’t supposed to be here today. In fact, I wasn’t supposed to be here 5 years ago, 10 or even 20. Furthermore, I wasn’t supposed to get married, have children or sport a head of grey. I am proud to say that I’ve accomplished all three.



Every grey hair is an accomplishment

Thirty-five years ago I was writing a book report on Christopher Columbus when I had my first true encounter with cystic fibrosis. According to what I read, I would be fortunate just to hit 25 years of age. That day I realized that I was an underdog and I'd be lying if I said that I cherished the role. I contemplated giving up that day and it wasn't the last time. As anyone with a chronic disease will tell you, it's never easy. I’ve hit rock bottom on plenty of occasions and know that while the lowest point is not somewhere I want to reside, it is a place that I can wallow for a little bit, calculate my next move and begin a comeback. It's taken many years but I’ve finally learned to use the role of underdog as a positive.



An underdog with bite

Doctors can measure my lungs, my sinuses and my digestive system but they cannot and will not measure my heart. I know that I probably should feel like life gave me a bad hand but after learning about my sister's fate, I think it has actually been quite fair to me. Outsiders and those first diagnosed with a chronic disease may see it as a curse but for many like myself who have lived with it all of our lives, we have learned to see it as more of a blessing. Yes, cystic fibrosis is responsible for weakening my lungs and pancreas and most likely shortening my life, but it also has strengthened my appreciation for life, my efforts regarding my health and my desire to give back to others.

In many ways, cystic fibrosis, the disease that will someday most likely take my life, is probably responsible for saving it.



Thanks CF

My journey has been a long one but 43 years later I can honestly say it has also been a blessed one. I have an amazing wife, two wonderful children and an amazing family and friends. Thank you everyone for the birthday wishes. And while we treat birthdays as special occasions, please remember that the other 364 days are pretty special too.





Blessed

Live your dreams and love your life.

Best Wishes,

Andy

What it's like to live with a Chronic Disease

What it's like to live with a chronic disease?

by Andy Lipman



The author has 43 years of experience living with chronic disease.

Want to know what it's like to live with chronic disease? Well, here you go.

The promise of a cure

I often wonder what it would be like to go a day without having to treat cystic fibrosis. I sometimes have dreams of doctors telling me to blow up your therapy machine, flush all your pills down the toilet and kick your inhalers to the curb because you've been cured. That dream slowly turned to mere fantasy when every doctor's appointment became like Groundhog's Day.

"When do you think there will be a cure?"

"7 to 10 years Andy."

The following year...

"When do you think there will be a cure?"

"7 to 10 years Andy."

5 years later...

"When do you think there will be a cure?"

"Well, Andy..."

"Let me guess...7 to 10 years, doc?"

Eventually the 7 to 10 years sounded less like the time till a potential cure and more like a prison sentence.

Am I scared?

People with other chronic diseases tell me they remember when they didn't have those diseases." I am unable to have those memories but sometimes I think it's better that way. I didn't have a huge transition into chronic disease by getting a doctor to diagnose me while I was old enough to fear for my life. I know many people including my own wife who have been diagnosed with diseases like cancer and I can't even imagine the Hell that goes through their heads. My introduction to CF was an encyclopedia article. I knew I had a disease but I didn't realize how deadly it was until I read my median life expectancy.

So in short, am I scared? You're damn right I am. But I've learned to focus less on the fear and more on the appreciation of everyday that I do get. I've also learned to use my disease for good. I can raise awareness, help others and even use this platform as a therapy for myself. I tend to personalize my disease by giving it a face and feelings. I like to say that everyday that I wake up, enjoy my day and go to bed is a victory over my villain. I'm a very competitive person so to know that I will be faced with the same bullying competitor for a lifetime is highly motivating.

How do you live with a chronic disease?

I live one day at a time. I don't tend to focus too much on my future though I always wonder if today will be the last day that I will be feeling good for a while. CF comes on so suddenly that I can be feeling pretty well one day and be sick in bed the next. Everyday is a schedule. I have to examine my plans and figure out when I will have time to do three sessions of 30 to 45 minutes of therapy. Actually it's reversed. I make my plans many times based on when I plan to do my therapy. Packing for trips is exhausting. Not only do I have to deal with the anxiety that I forgot something but I have to pack at least 2 bags of medical equipment and medicine. That takes care of my carry-ons. On the bright side, it allows me to board a plane early along with everyone else with visible diseases. I look like that guy who took the handicap spot at the local store and has to fake a limp in order to validate why I needed the space. Cystic fibrosis is very much an invisible disease. Unless you're the mother, father, brother, sister, wife, husband, son or daughter, you rarely see all that goes into staying somewhat healthy with this disease. My daily routine consists of taking 40 pills, doing two hours of treatments and doing multiple inhalers and aerosols. I go to the doctor quarterly and am often on oral or IV antibiotics.



My life may not be "normal," but it's all I know.

"You inspire me. I could never do what you do."

I'm often told "You inspire me. I could never do what you do." I tend to disagree with the latter but let's start with the former. It's flattering that I inspire you but it's also a little bit overwhelming. I don't want to be treated as a symbol of awe but rather just someone like you that will do anything possible to stay healthy and live a long life which brings me to the second part of that statement. You could do what I do if you had to in order to stay alive. I see people all the time that work out for two hours a day or go on very strict diets. The only major difference between me and you is if you stopped working out you'll probably just get a little flabby or out of shape. If I stop doing what I need to do, I'll die. I know that's a big difference but believe it or not someone like me may still look at you and say "Wow, that's impressive." I think people who are diagnosed with something later in life understand this from both viewpoints. They used to look at others and say they could never do that and yet when they are put in the position, they do that and a whole lot more.



Each of us is one phone call away from going from being inspired to the one doing the inspiring.

What's one piece of advice you would give as a chronic disease sufferer?

For one, I don't suffer. I just temper my expectations on how I live. In other words, I don't just drive off one day and move to California with just a suitcase of clothes and my dog Spike. I can't do that with all that I have to pack and my treatment schedule the way that it is. It's nearly impossible to find a good CF center so once you find one don't do anything to jeopardize losing it. Also I would never name my dog "Spike" but that's neither here nor there.

My advice is not for only those with chronic disease. It's for everyone. Live your dreams and love your life. Sounds simple and it is. Sometimes achieving your dreams is filled with obstacles. That doesn't mean you can't get there. It just means your journey may be a bit different. Heck, my dream was to have children and my wife and I unfortunately couldn't do that the "fun" way. We had to spend lots of money, deal with emotional distress and face the physical pain of in vitro fertilization (IVF) in order to even have an opportunity to reproduce but thankfully the stars aligned and we have a 10 year old girl and an 8 year old boy. There are other avenues too including adoption and surrogacy.

And as far as being able to "live your life," technically we all have a chronic disease. It's called life. We each have it, there's no magical cure to prolong it and we will have a lot of regrets if we don't enjoy the moments. I often say that everyone breathes but not everyone lives.

What would be your advice to your 18 year old self?

I'm going to actually change the question to what advice would I give my 8 year old self because it was at 8 that I thought my life was over. That's when I read the encyclopedia. That's when I thought I was going to die. That's when I first faced the uphill battle of living with a chronic disease.

I remember crying myself to sleep that night I read about my prognosis. I thought life wasn't fair and that I wasn't going to live to see any of my dreams come true. Well, here's what the soon-to-be 43 year old me has to say to that kid.

Dear Andy,

I know things don't seem very favorable but I promise that if you work hard, your dreams can come true. And it's ok to get down. Don't let anyone tell you otherwise. All I ask is that you seek help when you are down. A day or two is normal. A week or two is not.

You need to know some things. While it may not seem it, life is fair. In fact, it's very fair. You had a sister that didn't even live a month. You want to argue with her that your life isn't fair?

Never fear failure and don't feel high and mighty when you achieve success. Andy, I hate to be the one to tell you but you're an addict. The highs and lows are dangerous to you and your family.

Don't worry so much about how long you're supposed to live rather worry more how you live. Don't be fearful about how different you are rather be more concerned with how much you try to be like others.

And finally, I have a feeling you will some day meet the perfect girl for you. She will be one special girl and not just because of the way she handles your disease but also because of the way she handles everything in front of her. Don't screw that one up.

Oh and if you happen to have a daughter and you get a chance to name her after one of the Braves pitchers, don't name her "Glavine" or "Smoltz."

Stay positive!

43 year old Andy




I do as I'm told.

And finally

The most important thing to know about someone with a chronic disease is that we may not like the fact that we have it but many of us have embraced the fact that it is part of who we are. How much of who we are is up to the individual. I've made my cystic fibrosis platform a prominent part of my life but I understand that others prefer privacy regarding the subject. I find that talking about CF and especially joking about it, makes it easier to live with it. Still, there is a time and place to discuss such things. I do believe that awareness is a 24 hour a day, 7 day a week job and if even my presence in a room starts a conversation then that's a definite step in the right direction.

I hope that all of you are well.

Live your dreams and love your life!

Best Wishes,

Andy

What it's like to live with a Chronic Disease

What it's like to live with a chronic disease?

by Andy Lipman

The author has 43 years of experience living with chronic disease.

Want to know what it's like to live with chronic disease? Well, here you go.

The promise of a cure

I often wonder what it would be like to go a day without having to treat cystic fibrosis. I sometimes have dreams of doctors telling me to blow up your therapy machine, flush all your pills down the toilet and kick your inhalers to the curb because you've been cured. That dream slowly turned to mere fantasy when every doctor's appointment became like Groundhog's Day.

"When do you think there will be a cure?"

"7 to 10 years Andy."

The following year...

"When do you think there will be a cure?"

"7 to 10 years Andy."

5 years later...

"When do you think there will be a cure?"

"Well, Andy..."

"Let me guess...7 to 10 years, doc?"

Eventually the 7 to 10 years sounded less like the time till a potential cure and more like a prison sentence.

Am I scared?

People with other chronic diseases tell me they remember when they didn't have those diseases." I am unable to have those memories but sometimes I think it's better that way. I didn't have a huge transition into chronic disease by getting a doctor to diagnose me while I was old enough to fear for my life. I know many people including my own wife who have been diagnosed with diseases like cancer and I can't even imagine the Hell that goes through their heads. My introduction to CF was an encyclopedia article. I knew I had a disease but I didn't realize how deadly it was until I read my median life expectancy.

So in short, am I scared? You're damn right I am. But I've learned to focus less on the fear and more on the appreciation of everyday that I do get. I've also learned to use my disease for good. I can raise awareness, help others and even use this platform as a therapy for myself. I tend to personalize my disease by giving it a face and feelings. I like to say that everyday that I wake up, enjoy my day and go to bed is a victory over my villain. I'm a very competitive person so to know that I will be faced with the same bullying competitor for a lifetime is highly motivating.

How do you live with a chronic disease?

I live one day at a time. I don't tend to focus too much on my future though I always wonder if today will be the last day that I will be feeling good for a while. CF comes on so suddenly that I can be feeling pretty well one day and be sick in bed the next. Everyday is a schedule. I have to examine my plans and figure out when I will have time to do three sessions of 30 to 45 minutes of therapy. Actually it's reversed. I make my plans many times based on when I plan to do my therapy. Packing for trips is exhausting. Not only do I have to deal with the anxiety that I forgot something but I have to pack at least 2 bags of medical equipment and medicine. That takes care of my carry-ons. On the bright side, it allows me to board a plane early along with everyone else with visible diseases. I look like that guy who took the handicap spot at the local store and has to fake a limp in order to validate why I needed the space. Cystic fibrosis is very much an invisible disease. Unless you're the mother, father, brother, sister, wife, husband, son or daughter, you rarely see all that goes into staying somewhat healthy with this disease. My daily routine consists of taking 40 pills, doing two hours of treatments and doing multiple inhalers and aerosols. I go to the doctor quarterly and am often on oral or IV antibiotics.



My life may not be "normal," but it's all I know.

"You inspire me. I could never do what you do."

I'm often told "You inspire me. I could never do what you do." I tend to disagree with the latter but let's start with the former. It's flattering that I inspire you but it's also a little bit overwhelming. I don't want to be treated as a symbol of awe but rather just someone like you that will do anything possible to stay healthy and live a long life which brings me to the second part of that statement. You could do what I do if you had to in order to stay alive. I see people all the time that work out for two hours a day or go on very strict diets. The only major difference between me and you is if you stopped working out you'll probably just get a little flabby or out of shape. If I stop doing what I need to do, I'll die. I know that's a big difference but believe it or not someone like me may still look at you and say "Wow, that's impressive." I think people who are diagnosed with something later in life understand this from both viewpoints. They used to look at others and say they could never do that and yet when they are put in the position, they do that and a whole lot more.



Each of us is one phone call away from going from being inspired to the one doing the inspiring.

What's one piece of advice you would give as a chronic disease sufferer?

For one, I don't suffer. I just temper my expectations on how I live. In other words, I don't just drive off one day and move to California with just a suitcase of clothes and my dog Spike. I can't do that with all that I have to pack and my treatment schedule the way that it is. It's nearly impossible to find a good CF center so once you find one don't do anything to jeopardize losing it. Also I would never name my dog "Spike" but that's neither here nor there.

My advice is not for only those with chronic disease. It's for everyone. Live your dreams and love your life. Sounds simple and it is. Sometimes achieving your dreams is filled with obstacles. That doesn't mean you can't get there. It just means your journey may be a bit different. Heck, my dream was to have children and my wife and I unfortunately couldn't do that the "fun" way. We had to spend lots of money, deal with emotional distress and face the physical pain of in vitro fertilization (IVF) in order to even have an opportunity to reproduce but thankfully the stars aligned and we have a 10 year old girl and an 8 year old boy. There are other avenues too including adoption and surrogacy.

And as far as being able to "live your life," technically we all have a chronic disease. It's called life. We each have it, there's no magical cure to prolong it and we will have a lot of regrets if we don't enjoy the moments. I often say that everyone breathes but not everyone lives.

What would be your advice to your 18 year old self?

I'm going to actually change the question to what advice would I give my 8 year old self because it was at 8 that I thought my life was over. That's when I read the encyclopedia. That's when I thought I was going to die. That's when I first faced the uphill battle of living with a chronic disease.

I remember crying myself to sleep that night I read about my prognosis. I thought life wasn't fair and that I wasn't going to live to see any of my dreams come true. Well, here's what the soon-to-be 43 year old me has to say to that kid.

Dear Andy,

I know things don't seem very favorable but I promise that if you work hard, your dreams can come true. And it's ok to get down. Don't let anyone tell you otherwise. All I ask is that you seek help when you are down. A day or two is normal. A week or two is not.

You need to know some things. While it may not seem it, life is fair. In fact, it's very fair. You had a sister that didn't even live a month. You want to argue with her that your life isn't fair?

Never fear failure and don't feel high and mighty when you achieve success. Andy, I hate to be the one to tell you but you're an addict. The highs and lows are dangerous to you and your family.

Don't worry so much about how long you're supposed to live rather worry more how you live. Don't be fearful about how different you are rather be more concerned with how much you try to be like others.

And finally, I have a feeling you will some day meet the perfect girl for you. She will be one special girl and not just because of the way she handles your disease but also because of the way she handles everything in front of her. Don't screw that one up.

Oh and if you happen to have a daughter and you get a chance to name her after one of the Braves pitchers, don't name her "Glavine" or "Smoltz."

Stay positive!

43 year old Andy




I do as I'm told.

And finally

The most important thing to know about someone with a chronic disease is that we may not like the fact that we have it but many of us have embraced the fact that it is part of who we are. How much of who we are is up to the individual. I've made my cystic fibrosis platform a prominent part of my life but I understand that others prefer privacy regarding the subject. I find that talking about CF and especially joking about it, makes it easier to live with it. Still, there is a time and place to discuss such things. I do believe that awareness is a 24 hour a day, 7 day a week job and if even my presence in a room starts a conversation then that's a definite step in the right direction. I hope that all of you are well. Live your dreams and love your life! Best Wishes, Andy

The Race that Changed Everything

"Most people run a race to see who is fastest. I run a race to see who has the most guts." -Steve Prefontaine

When I was a little kid, cystic fibrosis scared the hell out of me. Imagine reading in an encyclopedia that you weren’t supposed to see your 25^th birthday. Now imagine finding this out when you’re not even a teenager. It was beyond scary.

My Uncle Bobby, who bravely married into our family around that time, played the role of my coach and cystic fibrosis’s biggest adversary. He trained me to run 1k and 5k road races. The training regimen improved my health. Instead of not being able to complete laps in PE every single day, I was now finishing amongst the top tier of runners in my grade. That year, I won most improved athlete in the fourth grade. That award sounds like winning "Most Likely to Succeed" in a high school yearbook but I promise you that award still stands out as a moment of clarity for me. It showed me that with tireless effort, overachievement was possible. I also began to realize that defying the odds felt damn good.

Uncle Bobby at one of his last Peachtree's

Still I made every excuse I could think of not to run the most famous 10k in the United States. I just couldn’t get my head around running 6.2 miles. That was running 25 quarter-mile laps around the Peachtree High School track where Bobby and I spent hours training.

Bobby didn’t take to my pity especially being that he’d run the race for years. He had a drawer full of the legendary Peachtree T-shirts. He soon began teasing me that I would never be able to earn the legendary shirt because I didn’t have the strength mentally to run the race. He would try to add fuel to the fire by calling me every year after the race to ask me how he looked on TV while earning another shirt. As my running days subsided and I stopped wanting to train with my uncle, his post-race calls faded and eventually stopped. It wasn’t until I finished college that I realized that my lungs didn’t stop me from running the Peachtree Road Race.

My head did.

All I wanted was one of these.

On July 4, 1997, with my uncle by my side, I ran and completed my first Peachtree Road Race...and I was soon hooked.

Tomorrow morning marks 19 years from that day and will be the 20th consecutive time that I run those hilly 6.2 miles on America’s Independence Day. Sadly, because Bobby's last Peachtree was in 2012, I’ll be doing it without my ruthless coach beside me. Uncle Bobby is alive and well but his body told him it was time to stop running…his nephew did not.

Therefore he should be expecting a post-race call tomorrow from his former running mate, who will be adding a 20^th Peachtree Road Race T-shirt to his own drawer.

Hey, a little teasing never hurt anyone…heck, it probably saved my life.

Thanks Uncle Bobby! Let me know how I look on TV!

I run this race without him now but he's still busting my chops in spirit.

Live your dreams and love your life!