This is a blog that Andy has written to describe his battle with cystic fibrosis. Andy is 40 years old and is married to his beautiful bride Andrea and has two miracle children, Avery and Ethan. Andy appreciates each day and hopes to show the doubters that in his world CF stands for Can Fight!
Tuesday, September 28, 2010
Life after Disney
Disney
Well this past week we took the kids to Disney. I tell you what. Taking 2 small kids to Disney World is no small feat. First, they are off schedule which means they are CRAZY!!! Second, you have to watch their every move. Third, you have to tell them "no" every five minutes when you pass an ice cream parlor or a souvenir stand. It was fun though and it was awesome to see their reactions to the characters and the rides. Ethan got to meet Buzz Lightyear and Avery got to meet Mary Poppins among others. Andrea and I were exhausted upon returning late Saturday night but it was worth it. Before we arrived at Disney, we stopped at my Nana's house for a night. It was the first time that the kids had been there and Nana was so excited. She had so many toys that Geoffrey the Giraffe was jealous. We also saw Andrea's mom and her husband. The kids love them especially Avery. It was nice to see family. The older you get, the more you appreciate your loved ones. At least that's what I've found.
Today's picture
Enclosed is a picture of the kids in their Halloween costumes. Apparently Disney doesn't disappear just because I left Orlando.
Health
I'm still on Tobi. I believe this is week 3 of 4. It's getting a bit exhausting especially since I was up till 1 a.m. every night at Disney finishing up my treatments. It's like being on Pacific Coast Time but having to arrange your schedule around East Coast time as I still have to work out, do my therapy and be at work in the morning. Still I got some pretty good health news. My sputum culture was normal and my numbers were all pretty good except my cholesteral which was quite high. That's all I need is more medicine. I'll see my doctor and see what I need to do to treat this. I've also lost about 7 pounds on my diet so far. It's been 2.5 weeks. My goal is to lose 12 pounds in 4 weeks so we'll see.
Softball
My softball team is now 2-0 as we blew out yet another opponent last week 18-9. I went 4 for 4 and drove in several runs and played a solid first base. We have a former minor league player from the Dodgers organization throwing it 90mph to me at SS and I'm making the plays so I'm thrilled with that.
Braves
The Braves are 1.5 games up in the wild card race so it's coming down to the final week. Andrea and I are going Saturday. Maybe that will be the clincher. Either way, it's Bobby Cox day and I'm ready to say "Bon Voyage!" I appreciate what he's done for the organization but I think his managing skills have definitely declined over the last decade. It will be nice to get some new blood in here.
Falcons
I'm really proud of my Falcons. Great win against the Saints the other day. Matt Ryan is my QB. I know Vick is having a great year but Ryan is going to win us a Super Bowl in the next 5 years. You can take that to the bank.
Soccer
Avery's soccer team is 1-1 in our first 2 games. The kids have a great time and I'm having fun coaching them. I ordered trading cards of my soccer player if anyone is interested in a definite collector's piece.
My depression
I saw my therapist this week and agreed that since it's fall and almost winter that I will be seeing him more often. This is the time of year where I get depressed. I already feel a hint of it. I've also made some more discoveries about my youth that have caused me to really think hard about how much I really want to know about my past. I've missed my addiction meetings the last 2 weeks due to travel and seeing friends and I look forward to returning on Thursday. These meetings have become part of my life. The phone calls to friends from my group have also become a necessity. I spoke to several of these friends the last few days. My sponsor and I completed Step 9 on Wednesday which has been a grueling step. I will be working on Step 10 next week. That is basically continuing to do the right things and react the right way to things. I've made amends to a few people but I have several more amends to go.
Conclusion
Wish for Wendy is going well. We are having a lot of volunteers sign up and several new sponsors are on board thanks to Rusty Sneiderman our sponsorship chairman. Our goal is to hit $1 million cumulative over the past 11 years. I believe we're around $950 thousand right now. I'm excited that my parents are coming home next week. I miss them very much. My dad is doing great and can't wait to get home. Thanks to all of you who have asked about him. Andrea and the kids are well. Andrea starts her tennis matches again soon. I look forward to hearing about her kick-butt performances.
Well, that's it. I'll try to update my blog once a week for now on. Have a great week everyone. I hope all of you are healthy and happy.
Best Wishes,
Andy
Friday, September 17, 2010
Return of the Speaker
It had been over a year since my last big talk. I wasn't that nervous to get back out there. I was ready. I was speaking to the Kiwanis Club of Northside Atlanta over by the High Museum. There were about 25 people there. Most of them were between 65 and 75 years of age. One guy told me as soon as I walked in, "So you're the speaker? You better be good." He wasn't kidding either.
I'd been a pretty good speaker to this point. I don't want it to sound like bragging but I knew that I could do a good job. My last really big speech had probably been at the 11 Alive Community Service Awards about 4 years ago. I enclosed a picture from that night with Atlanta Falcons defensive pro bowler Patrick Kerney.
It was a pretty serious crowd yesterday. I put some brochures and booklets on the table, grabbed some lunch and waited for Joel Isenberg, a friend of my father's, to introduce me.
I did not have any notes. I hadn't practiced. I hadn't given a speech in a year and a half. How would I do?
I began speaking at 1:30 and finished my speech around 5 till 2pm. I took 10 minutes of questions. And when I finished, I got a rousing standing ovation. This one woman who just come back fom a mission in Africa couldn't stop hugging me. She said she didn't know me but was so proud of me. I had one man tell me that he'd been in this club for 30 years and he'd never seen a standing ovation with everyone getting up at the same time and clapping like that. He said he'd heard many people speak in his 70+ years on this earth and he would group me with one other man that he'd heard speak...Harry S. Truman. I was honored that he would put me in that company. I know I have a gift for speaking but I also think my story is really what captures an audience, not necessarily how I tell it.
I got a donation of $50 from the group after shaking everyone's hands afterwards. I felt like a rock star which is dangerous for an addict. You never want to get too high on yourself. I got in my car and stopped for a moment. I said my serenity prayer and got myself to a place of calm.
Joel e-mailed me last night to tell me that the speech was the most inspirational he had seen. I then got a donation on-line from one of the guys in the audience. I got a lot of compliments and was very happy with the response. I guess motivational speaking is what I'm meant to do. This is my talent. When I was young, public speaking was nowhere on my list of careers I'd like to do. I wanted to be a baseball player,a veterinarian, a doctor, a fireman or even a teacher. In 5th grade, I had to memorize a 14-line sonnet and I choked. I couldn't remember a single line. I knew the whole sonnet the night before but I'd totally forgotten it by the time I stood up. Ms. Stansberry gave me a D and asked me to sit down. I was humiliated. I never wanted to get in front of a crowd again. I remember though when that changed.
I was in high school. This was my senior year and everyone was doing reports on diseases that affect this country. My disease was AIDS. One afternoon. my teacher said, "Andy, are you ready to give your presentation?"
"Ummmm...sure," I said, "but can we eat lunch first so I can get something to eat. I'm hungry." We had the choice and the teacher was cool with it. I totally forgot about the presentation. I hadn't done any work for it. Most people spent weeks researching their project. I had less than an hour to put together a 20 minute speech on a disease that I'd barely heard of except for the death of Rock Hudson, a famous Hollywood actor.
I researched for 20 minutes and found very little in our library. AIDS was still not that well known and views about it were different depending on where you looked. Twenty minutes later, I almost went to my teacher and asked for an F, but I knew I needed this class to graduate and this presentation was almost half my grade. I was going to have to wing it. So sadly I made up half of my statistics but I spoke from the heart telling people how tough a disease AIDS was. Looking back, I should have been ashamed for my lack of preparation and misinformation concerning statistics. But that report was half my grade and I had to graduate. The teacher even started to cry. Twenty-five minutes later, I'd given the speech of my life. I'd made up for the 5th grade disaster with an impromptu act that would have made some of the great public speakers cheer. I got an A. The story is something I'm not proud of, but sometimes great things come when you least expect them. It was then that I knew I had this gift. I just never knew how I could use it. I do now. I'll use it to spread awareness and hopefully help us find a cure for CF and save so many people's lives. I'd like to find Ms. Stansberry and have her hear me now.
Today was Yom Kippur, the day of atonement for Jews. I know I have a lot of atoning to do. Yesterday afternoon I finally began Step 9 by contacting a few people who were on my list of people I harmed. Both appreciated my gesture and said the feeling was mutual. It ended on good terms and I felt some relief. My sponsor told me after a few of these responses I was going to feel better about myself. He was right. Still there are more people to contact. There is more closure to receive.
Avery has her first soccer game tomorrow and I'm really excited. I hope the kids have fun in my soccer coaching debut. Andrea has a big tennis match tomorrow. I'll be cheering on my Braves and hoping they can sweep the Mets. We're 1.5 games up pending the SF-Milwaukee game tonight.
I hope everyone has a good night.
Andy
Thursday, September 16, 2010
Morning treatments
Well, since I thought the evening treatment play-by-play was a good idea, now I'm showing you how the morning treatments work while I also discuss another blog topic.
6:00am: I got out of bed, prepared my medications and went to my little workout room which I jokingly call AL (Andy Lipman) Fitness. I hope LA Fitness doesn't sue me. The great thing about the name is that Andrea can work out there too. And Avery. Sorry Ethan.
6:40am: I finished my bicep/tricep workout while I watched season 1 of The Office for about the 200th time. I used to love that show but it kind of jumped the shark when Jim and Pam got married.
6:45am: I did my sinus wash, my sinus spray, my nasal antibiotic and my Xopenex inhaler. I then clean my hands and start my hypertonic saline.
Last night was difficult to write about. It's hard to write about your flaws as a person especially when your life is essentially a book. I used to be so afraid to tell people about myself that I locked myself in my room for days without coming out. Those were my college days, but there are still mornings in which I feel that way. I force myself sometimes to be social. People have a hard time believing that I'm very shy because once I get going I could talk to a fire hydrant. The truth is that I sometimes have to give myself a pep talk before I walk into a big room of people. The irony is that I love public speaking. I've yet to figure that one out. In fact, I have a speech this Friday at a Kiwanis Club in Atlanta near the High Museum. It's my first speech in about a year since I finally started working on my problems.
6:59am: I have started my vest therapy while still being on my hypertonic saline.
I'm a bit lonely right now as Ethan usually joins me in the basement by now. It used to be a pain to have him run around and grab me and throw things at me. Now I realize that I love it. I love having the company sometimes. Therapy I suppose has always been my isolation. Ever since I got the machine, no one really hangs out with me while I do my therapy. Andrea used to offer to hang with me but it's gotten a lot tougher now that we have two kids because she has to listen out for them. My therapy is so loud that it doesn't allow us to hear them. When I say therapy is my isolation, I also mean that by the fact that it makes me different. I've always felt that way. Unless I'm making a speech because people know I have CF, it's difficult to admit that I'm different to the unsuspecting peer. Still, this is all I know. I don't know what it's like to wake up, shower, brush my teeth, get dressed, eat breakfast and go to work. I do all of those things but I add about two hours of therapy and medical treatments to that every morning and every night.
Whenever I take a moment to think of all the meds/treatments I do during a day, I have to admit that it's overwhelming. I try to look at it though that there are other people in much more dire circumstances and I should feel fortunate. I also remember that my sister Wendy would have traded with me in a heartbeat. She only got 16 days on this earth. By my count, I'm over 10,000 days. I hated taking pills growing up. My mom used to stick them in oatmeal and make me take them that way. As far as my postural drainage (when my parents hit my back, sides and front before there was a vest machine), I used to wiggle, jump up and annoy my parents because I hated just laying there. Heck, look at me when I do my therapy now. I have to be doing something else like writing a blog or watching TV.
Where is Ethan? Come on buddy. Daddy's ready to be harrassed. He has become such a good talker now. You would never know he had a stroke. When I come home now, he grabs my hand and says "Daddy, look." He shows me something he's been playing with. After about 15 minutes, when I try to go to the bathroom or upstairs to take a breath, he whines "Daddy, uppy!!! Uppy!" He doesn't want me to leave so I pick him up and he hangs out with me. Avery has been a more difficult project for me and I blame that on me. I was not a good father to her during her first couple of years on this earth. I ignored her at times and didn't appreciate the amazing little girl she was turned into. I regret those moments but I've learned that you can't look back. We now have our time together either through daddy-daughter days or just a simple talk when I drive her somewhere. Having my alone time with her is so special. She's definitely got me wrapped around her little finger but don't tell her. I can't afford anymore Barbies.
I never knew I could feel the way about someone that I do about my children. They are a huge part of my life. I would die for them.
7:16am: I'm done with my hypertonic saline and have now moved on to my Pulmozyme aerosol. I'm still doing the vest as I'll finish them both in about 25 minutes.
This weekend is going to be a busy one. We have Yom Kippur Friday night and Saturday morning, which I mentioned in the previous blog is the Jewish Day of Atonement. Friday night is called Kol Nidre which is the holiest night of the year. Andrea and I will be in synagogue Friday night and Saturday morning. We are supposed to fast during that time. Due to taking meds and doing treatments, I usually grab something small to eat and drink water throughout the day. I like to think that God understands. I have fasted before but I've noticed that it affects me a little more than the average person to go without food.
Okay, if Ethan doesn't show up soon, I'm going to start throwing toys at myself. Maybe Avery will arrive first. Sometimes she just walks down and sits next to me. That of course means the end of this blog because it will be time for Starfall which is a kid's educational website that she and Ethan love.
Did I mention that with my therapy, I have to pay special attention to the time. I start my therapy at 40 minutes but I have to increase the frequency at 25 minutes, 20 minutes, 15 minutes, 10 minutes and 5 minutes. There is no buzzer or timer to tell me when to make the adjustments. I just have to be cognizant of the time.
The one thing I don't like about Tobi besides taking time away from hanging out with Andrea and the kids is that it makes me late for work. Most people with CF don't have full time jobs because with our medical agenda, it's almost impossible. I've made it work thanks to a very understanding workplace. Yes, it helps that my father plays a large role in the company but also I have some very understanding co-workers. I do the best I can to be as "normal" as possible. It' just difficult. Most people show up between 8:00am and 8:30am. I'm there closer to 9:00am. Sure I could wake up at 4:30am and do my therapy then but per my doctor and my wife I need to get my rest. It's not healthy to get four hours of sleep per night.
Since I've already worked out, I have to come up with something else to do during my 20 minute hiatus between my Pulmozyme and my Tobi. Today I think I'm going to run laps in the basement for about 5 minutes and then maybe check out my sports scores (although it's tough on mornings after the Braves lose) or my Facebook account. I've added a lot of friends. People think I'm crazy by doing that and maybe it is the addict in me because some of the people I friend don't know me, but they have a tie to cystic fibrosis so I figure it's a good way to tell them about my blog. It's also a good way to educate myself about things they might be doing that I have not tried to stay healthy. Also by starting Facebook groups, I'm learning that I'm not the only one that goes through depression partially because of this disease. There are many others who at one point thought they were alone too.
Well I'm one of the few East coasters that watched the entire Giants-Dodgers game last night. Sadly the Giants won and the Braves are about to be chasing a playoff spot instead of being able to control their own destiny. I love baseball. I don't know if I love it because it's a distraction from CF or if it's because it was the first true thing that my father and I both loved. It was our bond. It was the only show he and I agreed on when I was growing up. He would compromise his "60 minutes" and I would give up "The Facts of Life."
Speaking of my dad, he's doing better. His spirits are high. He'll be home soon. Everyone at work asks about him. I have to wear the strong face at work but I do worry at times. I'm his son and I love him, but I also know that he's doing well and this time in our lives is going to allow me to never take my father for granted again. I can say the same thing for my mother. She has been a rock. I love her so much. Yes, she nags me and worries about me but I believe those are two requisites in the Jewish mother handbook. If you ever lose your "Real White Pages" and you need to get a number, my mom can be your source. She knows everyone. Not only will you get a number, but you can have a background check added on for free whether you want it or not. For example, "Larry, oh I know his mom. Do they still live on Rocky Street? How's her arthritis? Does he still have that birthmark on his right knee?" You laugh but it's incredible. My parents are my heroes. They fight for me and they believe in me. I haven't always deserved their encouragement but they still give it to me and love me as if I was perfect. They show me a love that I not only want to give back to them but that I want to give to my kids and my wife.
7:41am: Vest is done. Pulmozyme is therefore done. I hear Andrea's footsteps which means Ethan and Avery are near. I can't wait to see the three of them. That's how I will spend my twenty minute break. I want to hang out with my family. During my problematic days, I never said nor felt that and that's really sad.
8:09am: I'm starting my Tobi aerosol treatment.
So I did a little running in place, hung out with the kids and Andrea for 5 minutes and then took the quickest shower I could. I also got all my meds together that I'll have to take while I'm at work. That's a total of about 20 pills. I also found out that I'm losing my mind because apparently when I woke up, Ethan woke up but since I left before he saw me, he didn't really think to hang out with me. I also want to bring up another thing. I hope I don't make it look like I do all of this and Andrea is sitting on the couch eating bon bons. That's not the case. That's not even close to the case. She has to get Avery prepared for her day at school. She has to straighten things up for the cleaners who come every other week. She has to watch the kids part of the time I'm doing my therapy. She has to get ready for work. Remember she's also a cancer survivor and has multiple sclerosis. There are so many others things I can mention that she does for me and the kids. She's my lucky star which is kind of what I think about when I look at the picture attached. Yes, funny people, I know that this is a picture of the moon but it's shining and moon metaphors don't go over as well.
Andrea is an overachiever herself. I just try to tell this blog from my end so sometimes I fail to mention things about others in the house. Magic, I'll write about you in the next blog and how you allow me to feed you every morning and give you treats. I know your life is not a picnic either.
Speaking of others in the house, I hear "Daddy, Daddy!" Here comes my little man. I can't believe how much I took my children for granted. I was mentally sick. Depression isn't something that goes away nor are my other emotional/mental issues. I have to be proactive and that's why I attend meetings and seek therapy. I don't want to let my family down again.
8:45am: Well, I'm done with my Tobi and off to work. I took Ethan upstairs, grabbed some breakfast on the run and should be at work a few minutes after 9:00am.
Thanks for spending time with me over the last 10 hours and 2 blogs. Hopefully it gave you a small peak into my CF world. Have a great day. For my Jewish friends, have an easy fast. For my other friends, have a wonderful weekend and never take for granted the time you have with family and friends. In fact, never take for granted any time you have just being alive. It truly is the greatest gift you'll ever have. I have to go now. Someone is throwing toys at me.
Live your dreams and love your life,
Andy
Wednesday, September 15, 2010
Making amends, dealing with regrets and a chance to join me during my treatments
I figured I'd give you details of what my therapy is like while I blog. I'll give you a blow by blow call of what I'm doing at each moment.
10:40pm: Two puffs on my Xopenex inhaler, pouring sinus medicine in both nostrils, spraying nasal antibiotic in both nostrils and squirting sinus spray in both nostrils
10:45pm: Starting my hypertonic saline
As I mentioned in my last blog, I'm on Step 9 which means making amends. I'm currently writing letters to those people that I've hurt in some way to amend my wrongs. How fitting that it occurs on the eve of Yom Kippur which is the Day of Atonement in Jewish tradition.
11:00pm: starting my 40 minute vest session
I am having a tough time right now because I'm having to re-live my past mistakes. I've heard the line "Everyone is human" but that sounds more like an excuse to me than a simple cliche. I have made mistakes and I'm far from perfect. I have let my compulsion and depression issues get the best of me. I have hurt several people in my life including many who I love very much.
Not only have I had to look at my recent past but I've had to remember things from my childhood that have played a role in my actions as I grew up. George, my therapist, and I have gone over these issues frequently. I've tried to look up some of the people who affected me negatively as a child but I could only find one and I promised my sponsor I would wait till I finish my 12th step before I call or e-mail him. The other person is unreachable at this point. I looked her up on Facebook, Linkedin, MySpace and Google. It's as if she doesn't exist except in my mind. I'm sorry to be so vague when I speak of my wrongs but I'm not ready to release that skeleton yet. I've released so many already.
I'm about a week into Tobi and I'm spending a lot of late nights and early mornings staring at this computer screen pondering life. I start thinking about my problems and wondering if it was God's grand plan to put me through these things because I'm the type of person who is not afraid to speak about his problems. Maybe I'm a spokesman who can help others. That's my hope. I'm not being cocky when I say that; it's just I hope these things in my life happened for a reason. I have to believe that in order to keep going.
11:17pm: Done with hypertonic saline, still doing my vest and now doing Pulmozyme aerosol for 20 minutes while I finish my vest simultaneously
When I'm having a good day, I look at my life and think I married a beautiful woman, miraculously had 2 children, ran with the Olympic Torch, wrote multiple books and have become a successful fundraiser. When I'm in my dark place, I think about death a lot. I think about leaving my kids with only a faint memory of their father. I think about all of the regrets I have and how I'll never be able to make up for them. Life is a complicated thing. The minute I think that life is unfair, I have to remember how ironic that is. I've been given a life. That's the fairest thing God can do for us. Some of us aren't given the hands we would have wished for but still we're living and breathing and that's fair enough for me.
Several people have asked what depression is like or what addictions/compulsions are like. In my case, depression feels like I'm walking into this very dark place and I can't get out and after a while I don't want to get out. I just become lazy in shame. It feels as if there are no solutions to any of my problems. Every second seems to last an hour and every day seems to last a month. People are constantly telling me to snap out of it as if I want to be this way. Depression is not something I want to feel; it's just something I feel. Imagine having to sneeze but people tell you to just hold it in. You can't do it and neither can I. Compulsion and addiction are kind of the same thing. There are hundreds of addictions out there if I were to guess and since reading about this topic, it seems like a common theme is that addiction is when you can't stop from doing something no matter what the consequences are. It's a feeling like everything is shades of gray while it should be obvious what is black and what is white. It's like having the devil on your shoulder telling you what to do and the angel is fast asleep. It's scary stuff.
I'm on a few anti-depressants and they do help, but I still have my moments though I can cope now in a more positive way. I go to meetings for my compulsions and I go to therapy for both my compulsions and depression. I'm an obvious addict by the way with whatever I do. Let's look at my fish hobby as one example. I started with a beta fish and a year later I have 2 beta fish in my office, 2 tanks in my living room and a large tank in my bedroom. I could name several more examples but they're all the same. I always want more. Nothing is perfect. When I get to the top of the mountain, I want to find a taller mountain. That's something I'm working on toning down.
On a bright note, I'm so excited about going with the family to Disney World. Avery is so excited. It's all she can talk about. Andrea has done a terrific job setting all of this up. I know that the kids will love it. I'm also excited to see my Nana Rose whose house I haven't visited since Avery was a baby. I can't wait to show my kids around the house which my grandmother has had since my mom was a little girl. We are also looking forward to seeing my mother-in-law Roberta and her husband Glenn who live just outside of Orlando.
11:40pm: Finished my vest and Pulmozyme. Now must wait 20 minutes before starting my Tobi aerosol. Cleaned the basement. Watched Giants-Dodgers game on Internet and rooting for the Dodgers so the Braves can stay 1.5 games up on Giants in the wild card race. Between the 6th and 7th innings, I ran 10 laps in the basement.
Well, I plan to start making my amends this weekend and I plan to atone for my wrongs on Friday night and Saturday during Yom Kippur. I can tell you that now I have a very high self esteem but not to the point of arrogance. That's dangerous for any addict. The moment you think everything is great is when you let your guard down and all of your issues return at full force. I'm never letting that happen again. Never!
12:05am: Starting Tobi
I'm not the only one with CF who deals with emotional issues. I started a Facebook group for those with CF who deal with depression too. In just over a week, I have nearly 200 members.
CF is a depressing disease. I just glanced at "Growing Older with CF" which is a handbook for CF adults. Some of the chapters include Pulmonary Disease, Gastrointestinal Disease, Pancreatic Enzyme Deficiency, Hemoptysis, Pneumothorax, Sinusitis, Bacteria Fungi and Lung Infection in CF, Pulmonary Exacerbations, Respiratory Failure, Lung Transplantation, Diabetes Millitus, Glucose Intolerance, Arthritis and Other Joint Diseases and Bone Conditions, and CF and Cancer.
Apparently having CF means there is more of a probability of having digestive tract cancers and also the odds of have leukemia increase if a patient has the Delta F508 gene, which most CF patients including myself have. Looking at all of this, it's no wonder CF patients have trouble with depression. I didn't even mention the fact that 98% of males with CF can't even have children without fertility methods. I'm one of the lucky 98% but thanks to in vitro fertilization I was able to enclose the picture of these two cuties who Andrea and I just adore. Then you have the cost of drugs, the amount of drugs and the amount of time spent doing therapies and treatments. It's exhausting.
Still there are approximately 30,000 of us out there and we're surviving. Breakthrough drugs continue to develop. The life expectancy continues to increase. There are several exciting studies out there. In other words, there are lots of negatives to having CF but I'd prefer to see the glass as half full.
12:45am: Done with Tobi treatment. Giants won. Bummer! Heading up to drink some water, brush my teeth and head to bed. Thanks for joining me during my treatment tonight or should I say this morning.
To the day when CF stands for Cure Found. Thanks to the fundraising efforts of so many of you, that day is a lot closer than it has ever been.
Live your dreams and love your life,
Andy
Monday, September 13, 2010
The Program gets tougher
I finished my 8th step today and now I begin the amends process which is Step 9. I'm not looking forward to this step because I'm concerned about the reactions I'll get. Still I'm 4 steps away from completion of my 12-step program and only 2 months away from a year's sobriety. I'm definitely a better person than I was 10 months ago.
Off the Bench or as I nicknamed us The Brookhaven Dream Team began our season tonight. I promised the team that my new additions would make a difference. Well, we fell down 5-0 early and I think players started to doubt me. Then we got to bat and won by mercy rule 22-7. My 3 add-ons had about 7 hits combined and led the charge. I felt like Jon Schuerholz as I smiled with pride. We are going to surprise a lot of teams this year.
I want to make sure I mention in each blog something that tells you what it's like to have CF. Whenever I go in for X-rays and they see from my card that the patient has cystic fibrosis, they always ask me where my son "Andrew" is. I have to explain to them that I am the one with CF. Cystic fibrosis was a childhood disease for so long that many in the medical field still aren't used to us living past our teens. Hopefully they'll get used to grandfathers and grandmothers with CF in the next few decades. Or maybe they won't have CF because a cure will finally be found.
I wonder some days if there ever will be a cure. I don't know if I could get used to not taking pills with meals and not setting aside a time to do my therapy. I don't know if I could get used to less than half a dozen doctor's appointments per year and the life or death concerns that comes from each one. I don't know if I could get used to not having a life-threatening disease. Hey, what would I speak about during my motivational speeches? Maybe I could brag about my ability to read any word backwards but I don't think that will captivate the audience as much as a guy with a terminal illness can.
I had to explain to my daughter what was wrong with daddy several weeks ago when she asked if she would ever have to do therapy. I told her that daddy has something that is different than most people. I told her it's like her peanut allergy. You don't like it but you have it and you make the best out of it. I don't know that she got a lot out of it but it made me think of the conversations I'm going to have to have with my kids when they're older.
They're going to have to make sacrifices. They can't date anyone who smokes. They're going to have to learn how to do postural drainage which is when the person slaps the patient on the back, sides and chest to loosen the mucus. That's what my parents administered before the vest machine was invented. They'll only need to use it if we lose electricity or the machine malfunctions. They're going to have to learn about life and death a lot sooner than most kids. I remember that feeling. I don't plan to hide a lot from my kids. I don't want them to learn about their dad from someone else. That's one of the reasons I'm writing The Drive at 35. I want my children to know their father just in case CF gets the best of me before they're teenagers. I don't plan for that to happen but I want to be prepared. The Drive at 35 might just be their one chance to get to know their father - the good and the bad.
The one thing I want them to know is how much they mean to me. I've run with the Olympic Torch, written 3 books and chaired a highly successful fundraising event yet all of those accomplishments pale in comparison to raising two beautiful children and being married to a wonderful woman. They put life in perspective. I've included one of my favorite pictures of Avery and Ethan from the beach in Charleston. Avery loves him so much and Ethan would follow her wherever she goes.
My Tobi aerosol therapy is going pretty well. I don't like the extra hour or so it adds to my medical agenda but still it's for the best. I'm really excited that the doctor didn't need to put me on antibiotics Friday. I've been off them for more than six months. I'm really proud of that fact. I used to be on antibiotics all of the time.
I'm on day 4 of my new diet. I've replaced nutritional bars with bananas and twizzlers, gummy bears and chocolate with water and mangoes. I'm not going to weigh myself until next Friday to see if I've come down from 197. My goal is to be at 185 in 4 weeks. Maybe then I can fit into my skinny jeans...sorry that's the only thing I remember from Sex and The City.
Well, I hope everyone has a good night.
Andy
Bye Bye Summer
Good morning everyone. Welcome to another week in our lives. I had a nice weekend. I got to see several friends although this might have been the worst weekend in Atlanta sports history. Georgia Tech, Georgia, Georgia State and Georgia Southern all lost. The Falcons and Braves both lost yesterday. I think my hopes of having a championship this season - the first in 15 years for this city - rides on our women's WNBA team. Go Atlanta Dream! Has my life as a fan really come to this? I am excited to watch the Nadal-Djokovic US Open Final today. My worst fears though are that my Dawgs will lose to the Vols again this season. Andrea and I have a running bet that whichever team wins, our kids have to wear the team's outfit the following day. See the attached nightmare that I dealt with in previous years. Ethan (the picture attached), I'm sorry and daddy loves you. Hopefully Coach Richt will do what he can to protect you and your sister from wearing that color this year.
Tonight is the opening game in our fall softball season. I'm excited to get started, but a bit scared too. No, I'm not scared about softball. I'm scared because the summer is nearly over. It's not because I will miss the hot weather nor because I like vacationing. Granted, these are two things that make the summer special, but those aren't the reasons I'll miss this warm season. I'm actually scared of the fall and winter.
Those are the two time periods where my depression really seems to soar. First off, due to the colder conditions and some of the particles in the air (ragweed), I always seem to get sick this time of year and therefore my pulmonary function numbers go quite a bit down. I've reacted that way to the cold weather since before I can remember. Second, the days end earlier in the winter and it's a lot tougher to go outside and exercise. That's why I now play in a basketball league in the winter. I want to make up for not playing softball and having less opportunities to go running outside. It was last November that I admitted myself into a rehabilitation facility. Don't think that fact and the actions that put me there are not constant reminders in my head. Also, looking at the other picture attached (Grizzly Adams Lipman), I don't want to be that guy again. While I'm smiling in that picture, that was one of those moments where depression was getting the bet of me. I didn't care what I looked like nor what I did. I'm not going back there. By the way, the beard was real and it was spectacular.
Here's the good news. Through the rehabilitation process, I've learned how to cope with my concerns. I've learned how to work a 12-step program and how to deal with my triggers. Today my sponsor and I will complete Step 8. I'm really excited about that fact. Only four more steps to go after today and I will have completed the 12-step process. I'll explain step 8 later but I can tell you it's the most grueling step for me because it forces me to go back and remember my issues and why I'm in a 12-step program. It also forces me to remember the people I hurt for quite some time.
I'm proud though that my sobriety is at 10 months today. I know there are a lot of people who can't even make it 10 days. I also know that if my sobriety ended today, 10 months would not mean anything. My goal is life-long sobriety.
Well, that's it for today. I wish all of you a happy and healthy week. Let's hope the Braves can get it together soon because otherwise Andrea's going to have to deal with me complaining about Bobby Cox, Frank Wren and Nate McLouth for the next four months! Pitchers and catchers report in about 20 weeks, folks...wahoo!
Have a good one.
Andy
Friday, September 10, 2010
My doctor's appointment
Here's what happened at Emory today. I found out the previous night that I had to fast from midnight till about one o'clock p.m. today. I arrived at the lab at 10 a.m. As I was walking in, I helped a guy in the elevator to move his cart in and out on the next floor. He rewarded me with the last apple juice he had. It was really generous, but I wasn't allowed to drink so I paid it back a few minutes later when I arrived at the lab. An older gentleman was really thirsty so I gave him the apple juice and he was very appreciative. I talked to a few people today. I met an older lady who was a huge Georgia fan. She had to be in her 80's. I then met a woman going through a kidney transplant.
When I arrived at the lab, I had to give a urine sample (no, I did not ask Roger Clemens to take it for me) and then I had to give blood, more blood...and more blood! I had 13 vials of blood taken. Remember I'm still fasting at this point and then have to go another two hours before I have to come back and get another vial taken before I can finally eat. It's called the glucose test to see if I have CF-related diabetes. I had to drink a sugary beverage that tastes like a Mountain Dew that had been flat for weeks. I had to drink it in a five minute time span. The goal of the test was to see how my body broke down sugars. If the goal had been to be nauseas and light-headed, then it was certain that it was a success.
I went up for my PFT's around 10:45 and Dr. Sueblinvong was very pleased. I scored four percent higher than last time. She was bragging to the other doctors. I was really happy with the news. Next I worked on a new diet plan with Jessica, my dietician at the clinic. I have ballooned to 197 pounds. I am going for 185 pounds which means I'm going to be cutting out sodas and gummy bears, which is my sugary vice. I won't be seeing Dr. Sueblinvong for another three months which is the equivalent to several years for a CF patient.
I got the test results back this evening and I do not have CF related diabetes so I was glad to hear the news.
We took the kids to the Braves game tonight and tomorrow I'm planning on resting after a long day.
Thanks everyone for keeping me in your thoughts. You are in mine.
Have a great weekend and I am including a picture of my sister and Andrea from the Emmy's. Don't they look amazing!
Talk to you soon,
Andy
Thursday, September 9, 2010
It all starts at 11:44 P.M.
Well, it's 11:44 pm and I have started another month of Tobi. I will endure 28 days of treatments. I caught a cold the other day (or it's bad allergies) and coincidentally my doctor's appointment is tomorrow. Ugh! I hate being sick and going in because it almost guarantees my PFTs (pulmonary function tests) will be down. Also I will be doing labs (blood work) in the morning and a glucose test throughout the day to see if I have CF-related diabetes. I have to fast from midnight to noon. Maybe I'll just consider it a start to a new diet. I think I have love handles.
Today was Rosh Hashanah or the start of the Jewish New Year. It's a little confusing if you're not Jewish and you see people wishing each other a happy new year in September. You may be a bit concerned about them. We're okay though. I went to services today as it's tradition to miss work and pray on the new year. Our rabbi, Joshua Heller, had a great sermon today. I shouldn't just say today. He's always really good. He talked about making mistakes and making things better out of your mistakes. If that doesn't describe my goal from the last few years, I don't know what does. Even Andrea said it was like he was talking to me. It was tough having a cold and wearing a suit and sitting in a room with thousands of people but during that sermon it was as if I was the only person in the room. Thank you Rabbi Heller.
I'm worried about my doctor's appointment as I always am but I know I've worked hard and before this cold I was kicking butt in the gym. I know I'll have several tests too and that means weeks of waiting for results which is another wonderful thing about having cystic fibrosis.
I had a great day off with Andrea and the kids. Andrea made a great dinner the other night. I think she surprised herself but I think she's a really good cook and just doesn't give herself enough credit. Last night Andrea and Emily put the kids to bed so I could rest and Andrea let me rest today after synagogue as she went to a friend's house for an after synagogue meal. I've had bad cough the last two nights and could not sleep. I took a nap today though and the coughing is definitely down.
Softball starts on Monday as Off the Bench will be ready to show off the new crew to the rest of the league. They are going to be surprised. Avery has soccer on Sunday so Coach Lipman will be ready to go. The four of us are going to the Braves game tomorrow night. The team could use our help.
Well, that's all. I will let everyone know how the doctor's appointment goes. Please keep me in your thoughts. I hope that all of you have a great weekend.
Andy
Tuesday, September 7, 2010
CF stole my youth but I'm still kicking!
First, let me say that the 3 groups I've started on Facebook have been very well received. These are the three:
1) I have cystic fibrosis, depression and other emotional issues.
2) Cystic fibrosis was supposed to take my life yet here I am.
3) People with CF raising money to beat CF.
On my 37th birthday, I decided I wanted to get people together who are making a difference in the world of cystic fibrosis but I also wanted them to know that they are not alone when dealing with depression, addiction, compulsion and just an overall feeling of being overwhelmed when having cystic fibrosis. When we were kids, we had to deal with life-threatening doctor's appointments. We had to deal with the fear of cross-contamination and bacterial infections. A cold was not just a few days at home. It was a doctor's appointment followed by another followed by weeks of concern and confusion. Overnight camp was not an option and having a day without some type of therapy or taking some type of medication was the equivalent to a "normal" person going a day without eating or drinking.
CF has restricted me from many things. I had to stay close to home when I went to college. I could not have children without in vitro fertilization. I cannot eat anything with fat without taking some type of pancreatic enzyme. I do four hours of therapy a day, I take 20 to 30 pills and I go to a doctor at least a half dozen times a year.
Despite all of that, I sit here 37 years old and 3 days knowing that to this point this disease has not beaten me.
I've mentioned my problems with depression. I was suicidal in college and have thought about suicide off and on for years. I've dealt with childhood traumas - some I've mentioned and others I'm scared to confess. I've mentioned the problems I've encountered currently but I've held in some of my issues because I'm afraid how people will react. My book will do the confessing for me.
As I completed Step 7 and started Step 8 in my 12-step program today, I thought about what a different person I feel like compared to when I entered a rehabilitation facility nearly 10 months ago. I'm stronger emotionally, more prepared to cope and open and honest for the first time in my life.
This Thursday is Rosh Hashanah which is the New Year in Judaism and will soon be followed by Yom Kippur, the holiest day in the Jewish calendar. This is the day in which we atone for our sins. I think I can forgive myself now but I still must atone for a lot of things I've done wrong. I've hurt some dear people in my life.
So I go from sitting at home and praying all day Thursday to a doctor's appointment on Friday to see how my lung function is. It will be the first time I've been back since Dr. Wolfenden died. It will surely be hard to walk through those doors. I'm going to give it my all though as I know she would have wanted me to do that. I'm worried about my pulmonary function scores but I've worked hard the last few months so I can't fault my effort.
I'm looking forward to The Drive at 35 coming out in the next year once we get a publisher. I'm really excited about Celine Dion, Garth Brooks, Dale Murphy, Boomer Esiason, Robert Beall (President of the CF Foundation) and Frank Deford being on board to write forewords for the book.
Ethan continues to prosper despite the stroke he suffered at birth. Avery is a twenty year old in a four-year old's body. Andrea is doing well. She's on hiatus but her tennis season will resume shortly so I will keep everyone updated. My softball season begins next week. I think I've recruited the dream team of softball and I think this is my best chance to captain a champion. Avery's soccer team has been fun to coach and I look forward to our season opener in a couple of weeks. I know as much about soccer as Paris Hilton knows about modesty so it should be interesting.
That's all for tonight. I wish everyone a healthy and enjoyable week and to keep working hard to prove the naysayers wrong.
Best Wishes,
Andy
1) I have cystic fibrosis, depression and other emotional issues.
2) Cystic fibrosis was supposed to take my life yet here I am.
3) People with CF raising money to beat CF.
On my 37th birthday, I decided I wanted to get people together who are making a difference in the world of cystic fibrosis but I also wanted them to know that they are not alone when dealing with depression, addiction, compulsion and just an overall feeling of being overwhelmed when having cystic fibrosis. When we were kids, we had to deal with life-threatening doctor's appointments. We had to deal with the fear of cross-contamination and bacterial infections. A cold was not just a few days at home. It was a doctor's appointment followed by another followed by weeks of concern and confusion. Overnight camp was not an option and having a day without some type of therapy or taking some type of medication was the equivalent to a "normal" person going a day without eating or drinking.
CF has restricted me from many things. I had to stay close to home when I went to college. I could not have children without in vitro fertilization. I cannot eat anything with fat without taking some type of pancreatic enzyme. I do four hours of therapy a day, I take 20 to 30 pills and I go to a doctor at least a half dozen times a year.
Despite all of that, I sit here 37 years old and 3 days knowing that to this point this disease has not beaten me.
I've mentioned my problems with depression. I was suicidal in college and have thought about suicide off and on for years. I've dealt with childhood traumas - some I've mentioned and others I'm scared to confess. I've mentioned the problems I've encountered currently but I've held in some of my issues because I'm afraid how people will react. My book will do the confessing for me.
As I completed Step 7 and started Step 8 in my 12-step program today, I thought about what a different person I feel like compared to when I entered a rehabilitation facility nearly 10 months ago. I'm stronger emotionally, more prepared to cope and open and honest for the first time in my life.
This Thursday is Rosh Hashanah which is the New Year in Judaism and will soon be followed by Yom Kippur, the holiest day in the Jewish calendar. This is the day in which we atone for our sins. I think I can forgive myself now but I still must atone for a lot of things I've done wrong. I've hurt some dear people in my life.
So I go from sitting at home and praying all day Thursday to a doctor's appointment on Friday to see how my lung function is. It will be the first time I've been back since Dr. Wolfenden died. It will surely be hard to walk through those doors. I'm going to give it my all though as I know she would have wanted me to do that. I'm worried about my pulmonary function scores but I've worked hard the last few months so I can't fault my effort.
I'm looking forward to The Drive at 35 coming out in the next year once we get a publisher. I'm really excited about Celine Dion, Garth Brooks, Dale Murphy, Boomer Esiason, Robert Beall (President of the CF Foundation) and Frank Deford being on board to write forewords for the book.
Ethan continues to prosper despite the stroke he suffered at birth. Avery is a twenty year old in a four-year old's body. Andrea is doing well. She's on hiatus but her tennis season will resume shortly so I will keep everyone updated. My softball season begins next week. I think I've recruited the dream team of softball and I think this is my best chance to captain a champion. Avery's soccer team has been fun to coach and I look forward to our season opener in a couple of weeks. I know as much about soccer as Paris Hilton knows about modesty so it should be interesting.
That's all for tonight. I wish everyone a healthy and enjoyable week and to keep working hard to prove the naysayers wrong.
Best Wishes,
Andy
Saturday, September 4, 2010
To my friends on my 37th birthday
This was an incredible day. I woke up to several e-mails wishing me a Happy Birthday. The number escalated throughout the day to over 200. I also got a few calls too. I was thrilled. I'm not great with birthdays. I haven't had much luck with them for one. Number two, as hard as it is to believe, I don't like to be the center of attention for something I have not earned. I believe my birthday was the day I was born and that's about it. When I was younger, I was scared to turn a year older because I looked at it as another year closer to CF killing me. I know that's morbid but that's how I thought.
Still this one was different. It was the first time I equaled the median life expectancy for someone with CF. I spent the night before celebrating my anniversary with Andrea. We had a great time at dinner. The next morning I got to spend some time with the kids. Then my parents and Em came over. It was so great to see everyone and everyone looked terrific especially my dad. A few hours later, I took Avery to see Toy Story 3. I told Andrea that's what I wanted to do on my birthday. The funny thing was that Avery fell asleep on the way there but when we got in the parking lot, she immediately awoke and said "Daddy, I slept in the car so I wouldn't sleep in the movie." Is she really just 4?
Thirty-seven was never supposed to get here. My parents told me that doctors were hesitant to say that I'd see my teens. So the eve before my 37th birthday, I started a Facebook group called "Cystic fibrosis was supposed to take me as a kid, yet here I am." And in one day there are already about 100 members. Looks like the median life expectancy will be increasing again soon.
Andrea got me a really cool gift that will enable me to enjoy more Braves games even when I am not near a television. It's called Slingbox. I just hope the Braves make the playoffs so I can take advantage of her generosity.
I was proud of my Bulldogs for winning against UL-Lafayette. Not much of a test I know but I loved the fire that our new defensive coordinator showed when we allowed the only points we'd allow all day. Aaron Murray, our redshirt freshman QB, looked great as well.
This is my favorite time of year: October baseball, the start of college football and the NFL and the temperatures in Atlanta lowering so that I can actually walk outside without sweating like a Richard Simmons commercial.
Friday we got our pictures back from Charleston and Melissa did an amazing job. If you want a great photographer in the Charleston area, please let me know. I will recommend my high school friend highly. I am enclosing a picture that Andrea actually shot though. She may not be a professional, but she takes some terrific pictures too. Avery looks totally angelic here.
Well, that's it. It is now September 5th and I am 37 years and 1 day. I guess that means I'm now beating the median life expectancy. I guess I can truly say that I am OFFICIALLY beating cystic fibrosis today.
Have a good one and thanks again for the special wishes. I wish them for each of you as well.
Andy...37 and still going...
Friday, September 3, 2010
Is there a God and NINE hours from my life expectancy!
Do you believe in God? I believe there is someone or something that created this earth and other planets but I have to wonder if there is a God, why do some things happen that make absolutely no sense.
For example, my doctor passing away after helping so many people with cystic fibrosis. She had two young boys. My sister only living 16 days before CF took her life. Then there are these serial killers who are in prison who will live into their sixties or seventies. How fair is that?
I didn't believe in God for most of my life. If he or she was real, why was I born with this disease? Why do I have the emotional problems and compulsions that I do? Why would my son have had a stroke at birth?
I hated God for a long time. I hated him because I believed he hated me. I believed I was cursed like I'd done something to piss him off in a past life or he just didn't care much about me when he made me.
Lately my opinion has changed though. I'm in a program where believing in a higher power like God is pivotal. It's made me think about God in a different way...a more positive way. We had a meeting last night and I completed the 7th step the other day. It's my job now to give my problems to God and live my life.
I'm ready to change my views about God. I was never an Atheist nor an Agnostic which I'm not saying is wrong. I just want to be clear that I am Jewish and I have been a practicing Jew but I have always gone into synagogue and read the words. I never emotionally felt them. I think that's going to change. I believe my perspective has changed. I don't want this to sound like I'm religious and you're not. This is not about religion. It's about having faith in something whether you're Christian, Jewish, Muslim, or whatever. It's about believing in something and not playing God yourself. I played God for a long time and look what good that did me. I'm now going to believe in him and hope he will believe in me. Perhaps though I was just missing all of the things he did for me. Perhaps in all the bad stuff that has happened, I missed the good things in between.
I wasn't supposed to live to see my teens yet here I am. I'm able to make a difference in people's lives with my story and my message. I've found people that get me and get what I deal with. I have 2 beautiful kids and a wonderful wife. I have an awesome sister and such loving parents. I guess there must be a God and his message is that I'll never understand why he does the things he does but I can't question his reasons. I just have to live my life and appreciate what I have. Maybe that's what he's trying to say. Life is unpredictable so take advantage while you're here. We are all very lucky. We have had a chance to live a life. It's a true blessing.
Tomorrow is my 37th birthday, the median life expectancy for someone with this disease. I've been really down about it. I've been thinking about death. It's been a tough few months for me with losing my doctor, dealing with all of my issues and having to worry about my dad. I have not been looking forward to tomorrow until now. I'm looking at my 37th birthday as sort of a finish line. It's the first time I'll be at the expected life expectancy. Every year for a long time the median life expectancy has gone up. When I was born, it was in the teens. When I was in my twenties, it was in the early thirties. Now here I am finally ready to face my life expectancy in just 9 measly hours.
I'm ready to cross the finish line...though I am far from done with this race.
Have a nice holiday weekend.
Andy
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