Andy Lipman's Blog, page 14

My Kid is SICK! Summer Flu

Well, it’s summer time and my daughter was just diagnosed with the flu… The three-letter word that no parent wants to hear from the doctor. Despite my understanding that the flu was more commonly a winter virus. Ugh! With kids, there is no telling what they will pick up and per a local pediatrician, summer colds and the flu are in full swing here in Georgia.

Because I have CF, I must keep my distance as much as possible from my kids when they are sick. I think we (parents) can all agree this is one of the hardest things to do as a parent, not be there for your child when they need you the most. 

Due to cystic fibrosis, my lungs are already compromised making the flu an extremely hazardous bug. As a matter of fact, any bug my kids catch can be detrimental to my health if they pass it along. If you have children, I am sure you understand how difficult it would be to NOT catch something from them. It seems like kids are passing colds and other bugs nonstop all year round.

Granted, I think my daughter is okay with me giving her some “space” since she is 13 after all. I try to hug her as many times as I can each day regardless. However, it is important she keeps her distance as she recovers. Some parents would be ecstatic that they can throw their teenager in quarantine for a while… 

The truth is that I feel guilty. Guilty that my wife must do 99% of the work with my kids while they are ill, and of course sad that I am not able to help my baby girl feel better when she is sick. Andrea is amazing as a mom and this is just one more thing I ask of her. Due to my CF, she is always the parent to take the kids to the ER or Urgent Care when they are sick. My wife is solely responsible for taking care of our children when they are sick while I keep my distance. I am sure it is frustrating at times and even worse when they both come down with something. Blessed to have her as my wife and the mother to our children is an understatement.

Avery is on the mend, thank goodness, but my guilt that I can’t be there for her when she needs me most – well, that never seems to get better. Let’s just hope this is the last big bug in our house as we kick it into summer mode! 

Live your dreams and love your life.

Andy

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The Birth of a Movement!

It was October of 2016 and we had just finished our 17th Wish for Wendy softball challenge and while we raised a lot of money for the Cystic Fibrosis Foundation, something else very important happened. That year I started posting about people that I knew with cystic fibrosis on Facebook and many of those posts were getting hundreds of shares and comments. It occurred to me that all the posts were very positive but also told real stories of people who fought to get where they were. 

Andrea (my wife) suggested I write a book about these people. I had never written a nonfiction book about anyone but myself. 

After giving it some thought, I decided to write 10 interview questions and send them out via social media, e-mail, Skype, etc. I picked this method of delivery because individuals with CF are advised not to get within six feet of others due to bacterial cross-contamination. 

I interviewed people from over 20 countries and the toughest part was choosing which stories to use. To help me decide, I enlisted a committee of people who did not have CF to choose what stories to share in this first edition. (Notice I said this edition because my hope is to write as the movement grows). The selection process was extremely difficult for all of us.

What transpired over nearly three years is a book I titled The CF Warrior Projectbecause that’s what it was…a project. I went into it not knowing if the book would come to anything. I could have published more than 300 stories but it turns out I was only given leeway to use 50 per the publisher. I was able to negotiate and get them to take 65 due to the significance of the number in the CF world with regards to 65 roses.

During this time when I discovered that the last remaining son of Mary Weiss, Anthony. (not sure who this is read more here)  I thought all three of her children had passed but Anthony was still alive and it was such a pleasure interviewing him. I chose him to write the foreword. I also found celebrities and CF advocates who I wanted to write endorsements and nearly every one of them said “yes.” I still cannot believe it.

So now the book is available on Amazon. The toughest part is over. The rewarding part is now to come. The CF Warrior Project is focused on helping raising funds for CF charities, but more importantly raising hope in the CF community and explaining to people outside of the CF community what a CF Warrior truly is.

So that’s my story. Please check out the book on Amazon today. The reviews so far have been overly positive. Thank you everyone and thank you Facebook for revealing how much we needed to hear about the CF warrior.

Live your dreams and love your life.

Andy

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CF Awareness ​Month 2019: Three things that kicked some CF Butt this year.

Today May 2019 will come to and end, which means CF awareness month is nearly complete. 

It’s been a crazy month looking back and we wanted to highlight the three highlights of the month.

The CF Warrior Project came out on May 15th !! the CF Warrior Project received so much support from the community. I loved seeing these warriors being recognized (many in their awesome shirts) for not only their feats but also their attitudes. Five Feet Apart finished its time in theaters but not before raising a lot of awareness for cystic fibrosis. I still have yet to see the movie but will probably do so when it hits Red Box. I have read the book and found it to be a good depiction of cystic fibrosis. Did you know Claire Wineland, one of our CF warriors, worked as an advisor on the movie?Then to cap off the month Vertex announced they will be seeking FDA/global approval of the triple combination therapy which will positively affect 90% of the CF community…including me. 

This is the first breakthrough drug which will actually affect me directly!

Unfortunately this month we lost a lot of great people with cystic fibrosis, including our very own CF warrior Natalie “Graziano” Harris who was a singer and actor and survived two double-lung transplant. 

Even though things continue to improve in the world of cystic fibrosis, without a cure, we are still losing so many important people in our lives. Despite that fact that May has now come to an end let’s not stop raising awareness. We still need a cure and together we will find one!

Live your dreams and love your life.

Andy

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7 Extra Steps: Traveling with Cystic Fibrosis

Most people look forward to traveling over the holidays, but when you have a chronic illness, travel involves way more than just jumping on an airplane. 

My family will be traveling to Bethesda this weekend for Memorial Day in order to celebrate my cousin’s bat mitzvah. 

We are all very excited for the opportunity to spend time with our family and loved ones, but to be honest the whole idea of traveling can be overwhelming for me.

Don’t get me wrong. I love arriving at new destinations and exploring the sites with my family. It is the preparation for traveling that drags me down. There is so much to consider when you have cystic fibrosis and are traveling. 

1.     You need to pack all your meds and make sure you don’t forget any or that you will have enough for the entire duration of your trip and be prepared to bring a few extra days in case you get stranded for any reason.

2.     I have to prep my vest for the journey. I have a portable and a regular Hill Rom vest. While the portable is easier, I’ve been doing the Hill Rom 105 vest for so long that it’s kind of like my security blanket. I can’t take both on a plane. 

3.     I have the honor of lugging around my heavy equipment through the airport and get the extra screening by the TSA because of all my meds and electronics.

4.     When on the airplane, I have to wear a mask to protect myself from all the fun germs and illnesses people bring on board. I always feel like people are looking at me like I am contagious. It’s you, not me!

5.     Upon arrival, instead of taking a nap or getting out to explore, I have to locate the outlets in the hotel room, make sure the water in the sink is clean (so I can clean my nebulizers especially with international trips). 

6.     If it is an international trip, I have to do my research and plan ahead to make sure the wattage works for my equipment.

7.     I also need to figure out a space in the hotel room that is comfortable to sit and take my meds and do my treatments. 

Despite all the extra work that goes into traveling, I am willing to put in the extra work. CF is not an excuse to miss out on spending time with my wife and kids and see the world. I also know that I am lucky to have the opportunity to travel and experience things people with and without CF might not ever have the opportunity to do. Like I said, once I’m at the destination and settled, I love it. It’s just packing and getting there which is the tough part of the adventure.

I hope you all have a wonderful Memorial Day weekend and enjoy time with family and friends and be grateful for all of our military that has kept us safe from harm. 

Remember, life is what you make of it!

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Remembering CF Warrior, Claire Wineland

Founder of Claire’s Place Foundation 

At the age of 13, Claire Wineland founded Claire’s Place Foundation, Inc., a 501(c)(3) non-profit organizationproviding support to children and families affected by cystic fibrosis (CF). Claire lived with cystic fibrosis her entire life.  

In September 2018, Claire passed away at the age of 21. She was an activist, speaker, philanthropist and author.  Claire committed her life to traveling the world and speaking about her experience, from the beautiful and humorous to the painful parts of her life. She inspired all who followed her journey and broke down barriers for those who live every day with a chronic illness.

Claire’s humanity and wisdom was beyond her years and always shone through despite how sick she was. Claire loved sharing her unique outlook on life and raising awareness of the needs of children living with CF. Her inspirational outlook led her to be a social media star and TEDx Speaker.

Claire, and her undying passion for living a life to be proud of, even inspired the 2019 major motion picture Five Feet Apart directed by her dear friend Justin Baldoni who she met while filming CW’s Our Last Days. Although Claire inspired Five Feet Apart, consulted on the script, attended table reads with the actors, etc., the story is not her life story. It is, however, the first major motion picture to cast a spotlight on people living with cystic fibrosis. Claire, unfortunately, was never able to see the final film. She would be so proud that the film is raising awareness about truly living life fully, regardless of whether you are lucky enough to be born healthy, and especially if you are faced with CF or another chronic illnesses. 

Claire’s Place Foundation was a way for Claire to give back with hope, strength and joy. The foundation gave meaning to her life experience. Thanks to the continued generosity of her friends and fans; Claire’s family and the foundation’s board members proudly continue to carry Claire’s remarkable legacy forward by providing emotional and financial support to families living with CF. 

Claire’s Place is making a huge impact through its two programs – The Extended Hospital Stay Fund and the Family Support Program. For the Extended Stay Program, the foundation has set up a special cache of funds available to families with children such as Barrett that are experiencing a hospital stay of at least 14 consecutive days. Extended stays are a financial stress and often the children are in a city far from home. The Family Support Program connects families living with fibrosis to communicate with each other and share their experience, strength and hope with newly diagnosed or isolated families looking for support. 

For more information on Claire’s Place visit clairesplacefoundation.org

Read more of Claire’s story in the CF Warrior book, now available on Amazon.

You can also connect with Claire’s Place on social media: Facebook,Instagram

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Being a CF Warrior

Being a cystic fibrosis warrior means fighting a disease that up till now has an undefeated record. 

It means having hope when “experts” who study our disease every day did not predict we’d still be here.

It means losing friends multiple times a year, friends who you’ve never met in person but still hold a very special place in your heart and knowing that you have the same disease that took their lives.

It means waking up every morning around dawn to do treatments regardless of how you feel and finishing your last one around midnight. 

It means taking enzymes with each meal as long as there is at least a gram of fat. 

It means traveling with an extra couple of suitcases and looking like the number one on the FBI’s Most Wanted List when you go through airport security. 

It means quarterly doctor’s appointments that determine if things are okay “for now” or if you need weeks of IV antibiotics to treat a serious lung infection. 

It means feeling different 11 months of the year and having the month of May to make a difference during CF awareness month. 

And it means not living to work out but rather working out in order to live.

What does it mean to be a CF warrior? It means having our own undefeated record in the most important game of all: the game of life.

My name is Andy Lipman, I’m a CF warrior & I look forward to putting a blemish on CF’s undefeated record one day & there are lots of people like me out there!

Check out The CF Warrior Project available now on Amazon

#cfwarrior

#cfwarriorproject

#May15

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Mental Health and Chronic Illness

May is Purple and Green

Many of you are aware that this month is Cystic Fibrosis Awareness Month but it’s also Mental Health Awareness Month. These are both topics I’m passionate about because I deal with both. I didn’t know about either disease until I really experienced a fight with both. Before I turned 10, I read that people with cystic fibrosis don’t normally live to the age of 25. I went into the ultimate panic mode. My anxiety was through the roof and I thought those words meant there was no way I would live a real life. I got depressed and angry and blamed the world for all my problems. It was then that I knew how serious my cystic fibrosis was but had no idea about the severity of my mental illness.

Depression and anxiety have plagued me most of my life. I credit that to the fact that I have to deal with a chronic illness my whole life. Because of my illness I strive hard every dat to love a “normal” life. What I mean by that is imagine trying to be a dad, a husband, a son, a brother and have a career while also battling a terminal illness and all that goes with that. Each day, I do two hours of treatments, take 40 pills, and exercise for over an hour.. It’s not easy especially when you want to hang with your wife, help your kids with their homework, coach little league and have any semblance of a writing/speaking career.

Luckily, I have taken the step needed to get my physical and mental health in order. I’ve spent time in an out-patient mental health facility and now take antidepressants daily. I also go to both a psychologist and a psychiatrist multiple times a year. Every now and then I say the serenity prayer or just sit out in the sun to clear my thoughts. I am excited that CF clinics around the nation are now giving surveys to patients to see if they are having issues with mental illness.

Studies have shown that people with chronic illness suffer more with mental illness so I know I am not alone.

Physical health starts with mental health no matter if you have a cronic illness. If you can have a positive mindset, you can do all the things you want to do to succeed. It goes the other way too. Physical exercise can help your outlook. The key is to focus on both. 

Your “health” depends on it. If you are feeling depressed or anxious talk to your healthcare provider. They will provide you the resources you need. Visit mentalhealth.gov for more info

Live your dreams and love your life.

Andy

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“Hope-Raising” Through the CF Warrior Project

Just 9 more days until “The CF Warrior Project: 65 Stories of Triumph against Cystic Fibrosis” goes on sale!

Some have asked “Why is this movement, much less this book, so important to me?”

As a young boy growing up in Atlanta, my experiences with cystic fibrosis were all virtually scary. Anything I read about CF then was how little time I had left or what things I would never get to do. Whenever I saw a flyer regarding fundraising which my parents did their best to hide from me, it was ultra-negative in order to secure donations. While this was great for fundraising purposes, it provided despair for those of us with the disease, myself included. 

I realized that while fundraising is so important to helping those of us with cystic fibrosis, there was a serious lack of “hope-raising” going on that could do so much for the mental outlook of a person battling the disease on a day-to-day basis.

For so many years, I watched as “other” people participated in athletic fundraising events to help those of us with CF. Now things have changed. We are now the ones participating, fundraising and kicking some serious ass!

When I started the journey to write this book, I never thought I would find so many inspiring people. Because of the concern of getting within six feet of each other due to bacterial cross-contamination between those of us with cystic fibrosis, all interviews were conducted over the phone, e-mail or social media. I talked to people from about 20 different countries around the world and published stories of CF warriors from nearly a dozen of those. I learned that journeys were not only affected by symptoms but also by age of diagnosis, outlook and by treatment and medication availability in each warrior’s country.

What have I learned from this journey? The term “CF warrior” is not a phrase coined by just being born with cystic fibrosis. It’s a title that each of us earns by fighting cystic fibrosis with hard work, determination and a positive outlook even on the most difficult days.

It’s an honor to call myself a CF warrior. I can’t wait until you begin reading about these awesome people in my new book.

Just 9 more days…

Pre Order today!

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2019: A Special Year for CF Awareness

This is a very special year for CF awareness. Not only is there a New York Times best-selling book (Five Feet Apart) and a blockbuster movie that which feature the disease, but there is another breakthrough drug that could come available by the end of the year. For the first time in my life, that breakthrough drug would finally affect my genotype.

Cystic fibrosis awareness month is an opportunity to spread the word about this disease and how far we have come in regards to breakthrough drugs and people living a lot longer. 

It’s also the opportunity to explain what the disease cystic fibrosis does to your body, as many people think it is only a lung disease.

Cystic fibrosis awareness month is an opportunity for people either with the disease or taking care of those with it to spread the word about the disease and help raise money to find a cure. 

It’s an opportunity for 70,000 people around the world to use their voices to make a difference so that CF will one day stand for cure found.

My hope is that The CF Warrior Project will help us raise awareness and lead us closer to a cure as well as people hope with regards to living with CF or any terminal disease.

I am looking forward to the next 31 days of raising awareness and hoping that one day there is no need for a month to recognize this disease because we will have cured it. 

Live your dreams and love your life.

Andy

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Someone Special – Dating with CF

Dating with a terminal disease like cystic fibrosis is one of those things that is so difficult to do whether you’re a teenager or an adult. The question that would always pop into my head is when to reveal it. It’s like deciding when to light the match and potentially blow up the relationship. It can’t be easy for the other person either because no matter what your reaction is, I’m going to read into it. I’ve had women I’ve dated not call me back after they find out I have CF and I’ve had women who were totally understanding. The problem is that once it’s out in the open, I’m going to be thinking two things. One) Are you really with me because you love me or is it because you feel sorry for me? Two) Am I being fair to you by sticking around knowing I could be hospitalized at any point and I probably will not be able to have children?

My dad once told me that the advantage I have over most people is that the person I do find will be special because she can accept all the awful things that CF brings to a relationship and still love me for who I am. That’s what I found in my wife. That’s what I hope everyone finds in their partners.

Still just because I’m married and now with kids that we had through in vitro fertilization doesn’t mean the CF guilt just disappears. I still feel bad when I have to do my therapy when I could be helping my kids with their homework or watching a movie with my wife. I still feel bad when I’m coughing so much that my wife and kids can’t hear what’s on the television set. I still feel bad that some of my family members have to take less stuff on vacation so daddy can take his machine and nebulizers and fit them in the car. I still feel bad when we have to leave someone’s house early because I have to do my treatments. I still feel guilty when I’m on a double-date and I can’t drink alcohol with everyone else because I’m on tons of antibiotics. I still feel guilty that though neither of my children has CF that both are carriers of the disease.  

Relationships and cystic fibrosis can work together though. My best advice is not to have a schedule in your head as to when to reveal the big secret to someone you’re dating. I used to hide my pills or take them in the restaurant restroom. I hid my therapy equipment when I brought a girl home. I sprayed Pledge in the restroom after a CF bathroom break so that she did not leave me after whiffing the odor. But still, I think you tell someone when the time is right. I’ve mentioned it on first dates, second dates, fifth dates, etc. I had my own spiel at one point in which I would warn them not to read about my disease in books as it would only scare them and that I’d be glad to answer any questions. Truth is though that I never used it. My response to the subject of CF was usually “I’d rather not talk about it.” It was a negative subject for me and I hated when it was brought up. I hated the morbid subject of a very possible shortened life and the way it made me feel guilty for even broaching a relationship with someone. Was I truly being fair to them by dating them? Andrea made me realize that’s it was HER choice if she wanted to date me and she loved me for who I was and not just because of the cystic fibrosis though it was a big part of me BUT definitely not the only part of me. I was funny, hard-working and made Brad Pitt look like Gilbert Gottfried. Okay, just making sure you were paying attention.

Anyway, with “Five Feet Apart” out in theaters and dating with cystic fibrosis being discussed, I thought I’d give my two cents. The thing is that all we can do is be honest when the time is right and let the other person decide whether he or she is prepared to deal with that part of us. And if they are, we need to relinquish some of that guilt and enjoy that special person because any partner who can love someone despite cystic fibrosis is truly “special.”

There are no dress rehearsals in life. We were born with this disease but we don’t have to let it affect every part of our lives. Let it do what it did for me…and find the most amazing person you could ever dream of and love that person till death do you part.

Live your dreams and love your life.

Andy

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