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
Sunday, September 4, 2016
Saturday, September 3, 2016
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
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
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
Friday, September 2, 2016
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
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
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
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