Thursday, September 16, 2010
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,