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,


1 comment:

  1. God bless you, Andy, for taking your hardships and offering them up for others to learn from. It's a far better thing than wallowing. You're still making lemonade when you can, and that's remarkable. Your attitude inspires, Andy. Thanks for keeping our collective chins up.