Stuck in a rut

I recently received an email by someone that I consider to be a friend in the CF community. We've worked together on a project that had us talking every week for about 3 months and I was fortunate enough to get to know her and her husband. I feel invested in her and was honored that she would reach out to me in this situation. Her writing is in blue with my response in italicized black. It's split up like a conversation so it's easier to follow:

I read your blog post today and I feel like it really spoke to me. Last month my doctors gave me a "new baseline" lung function of 59-60 FEV1 which was down from 80. I stayed pretty positive. After all, I felt fine and was able to run a bit. I sat down and made a plan for myself to keep working out to be able to run 3 miles.  Then life happened. I got called into the hospital to work 3 out of the last 4 of my weekends (she tried the 4th but it was my wedding anniversary).  The girl I job share with has 2 kids who have been getting sick and passing whatever it is around her household.  Although most weeks I still got 2 days off at some point, there were stretches where I worked 8 out of 9 days. I was/am exhausted and now, puny. I'm coughing all night. I get winded doing laundry...much less running.  

First things first, this IS NOT your new baseline. You will simply not allow it to be. You will make the adjustments necessary because the two most important people in your life is your husband and you (You're the most important by default since you are your husband's most precious treasure...at least that's what I tell myself regarding Mandi ;) ) Was the crazy work schedule happening before the "new baseline" or after? 

Life happens to all of us. There are seasons of no problems and seasons of nothing but problems. The trick is to maintain our level of commitment to our health, even at the expense of some things we love in life. When I get sick and life is crazy, I basically have "no life". I handle my "have-to-dos" (in your case work) and outside of that, it's all about my health. If I'm not working, I'm at the gym or doing a treatment. It's no fun, no fun at all. Frankly, it sucks. But, when I'm in the season I always think back on two things: How I felt/feel when my health wasn't my priority, and the about the promise I made to Mandi. I promised her she would never be alone. Ultimately, there is only One person who can keep all promises, but I'll make sure that I do everything on my end to make sure I stay true to my word.

I am so sorry that you are feeling the way that you do. I wish I could take it from you. I wish there was something I could do.

I guess I just don't know what to do. I got the "be proactive" lecture from my doctors and I've sent them an email asking what I should do.  I'm just frustrated because I feel like I can't win. Since my coworker has sick kids, I feel like saying "Sorry [name withheld] I can't trade you a day because I may get sick if I don't sit on my couch. You're going to have to tough it out." is so lame.  I'm not missing treatments, and I was exercising.  What more can I do?

Let me say what your excuse is actually, maybe not what she'll hear, but what's actually going on, "Sorry [name withheld], I can't trade you a day because I'm sick. I'm sick because my health is declining. My health is declining because I've been putting more into this job than into my health. I need to put myself first for at least a while and get back on track. You're going to have to make other arrangements.". That is NOT so lame. That's being selfless for your husband. I understand that she may have to find another job or spend (lose) money on different childcare, but frankly, it's either you or her. You'll be the one losing money (and other precious commodities) if your health continues to decline.

There are times in our lives when what we did before will not fit, or fix, the present situation. I lived for years doing the same amount of treatments and exercise all the while watching my lung function decline. I wasn't willing to adjust. I loved my job. I was good at it. I felt valued. I didn't want to give that up. The ICU and the threat of intubation quickly changed my frame of mind. Seeing a lung function in the 20's slapped me in the face. I new if I didn't change, I was going to die.

You're not there, but I don't want you coming even close to that.

My doctor suggested that I may want to try a less physical job...maybe at an outpatient clinic where the patients aren't as sick and don't typically have to be lifted or anything.  But there are no jobs around for that...especially not full time. We can't afford me not to be full time right now. 

I don't think the physicalness of the job is the bad thing (in fact, it could be good). But being exposed to sickness can drastically alter your course. I've never been as sick with non-CF sickness as I was for the past year. I have a little girl who loves to give kisses, and I don't turn them down. I catch what she has almost every time. It's been hard. I'm trying to make adjustments, like washing my hands more and less kisses, but it's real hard. However, I know she'd rather have a living daddy who doesn't kiss her as much than a dead one not kissing her at all.

As far as the job situation, all you can do is to keep your eye out. Also, I'd rather see YOU make the decision to switch jobs, go part time, change careers, etc. than you being forced to change because of a decline in health. 

I realize now that I'm reading this over again, I'm kind of dumping a lot out there. Sorry.  I just wanted to see if you had any ideas. 

Listen, I'm always here for you. Always. You're one of my faves and I actually hurt a little bit reading all of this. I wish I had the answer. All I can do is share with you what I've learned over the years with my (good and bad) choices and you have to take it from there. 

Please never, ever hesitate to reach out.

I'm glad to hear you're doing so well! Your baby girl is adorable by the way. I like seeing all her cute fb pictures. :)

Thank you. Mckenna is just very fortunate that she has a smoking hot mom who passed down half of the genes ;)

**Update: She has been focusing on nothing but work and treatments/exercise for the past couple of weeks and is starting to feel much better. Sometimes a "boring life" is just what we need for a while!!**

I wish I wasn't FORCED to do treatments.

I remember the good old days as if they were yesterday. Those were the days I was able to do treatments on my own schedule, whenever I wanted, and work cystic fibrosis around my life. Those were the days when my doctors recommended 2 treatment sets a day and 3 if I wasn't feeling quite up to snuff. Those were the days I was running around like crazy and it felt like I barely had enough time to get in even the 2 recommended treatment sets a day.

In those days my treatment sets consisted of albuterol, Pulmozyme and the Vest. I only did TOBI when I was in the hospital, or when my docs convinced me that I needed a month or 2 at home. If I could go back to the good old days, I would. (If only to correct the mistakes I made concerning my health)

If I took better care of myself when I was younger and actually had less responsibility and no one truly dependent on me, there is no doubt that I'd be a better version of myself today. I firmly believe that I'd be a better husband, father and friend.

It's funny, because now I have real responsibility in my life and I do truly have less time for treatments and exercise.  Back in the day I was filling up my time doing many things that didn't have any real impact on the world nor did I have a family that I was required to put first. I often think back on the “good old days” and wonder what in the heck was I doing?

[SIDE NOTE: They wanted me to do at most 90 minutes of treatments and 30 minutes of exercise a day back in the "good old days". Today, I often do 90 minutes of treatments in one sitting. It's not uncommon for me to put in 240 to 300 minutes of treatments and exercise each day.]

Back in the "good old days" doing my treatments was a choice, a choice that I wish I would have made more often. I would have been much better served to have treated my body well when I was healthier than to take my health for granted, as I did, and end up at a place that I wish I never experienced.

For those that are new to this blog I'll give a very brief summary of what really changed my CF journey:

When I was younger I was very active and I never missed any treatments. I was very active and I didn't miss any treatments because those were the rules that I had to abide by to live with my parents. When I moved out I started making my own choices with regards to treatments and exercise. I didn't always make the best choices. I saw my lung function steadily decline from 97% in 2000 (the year I moved out of my parent's house), to a baseline of 70% in 2007 (I was in the hospital for 30 days every 3 months),  to an all-time low of somewhere in the 20's in 2009 (I was too sick to blow in the ICU and blew a 31%, 10 days into a 52 day stay). I decided during that hospital stay that I could no longer exercise only “when I had the time” and that 2 treatment sets a day (which I was actually doing consistently at this point) just simply wasn't going to cut it anymore. I wanted to live.  

After leaving the hospital in March of 2009 I made a dramatic change. I started exercising and/or working out every single day. I started doing 4 treatment sets a day, no matter what. I added any additional medication that I could take. I added an inhaled antibiotic every month. I decided that if I was going to take care of myself, the way that I should, I was going to go all in. If I wanted the results I was aiming for (an FEV1 of 75% after they told me to be happy if I got it up to 55%), I knew that my health was no longer a choice, but a "have-to". 

Through hard work, dedication, and the grace of God, I was able to regain and surpass all of the lung function that I had lost in the previous 10 years. 

I sit here today writing this blog feeling better than I have in a long, long time. The cool thing is that I'm able to say on most days that I feel better than the day before. I recently had an FVC of 92% and that's something I haven't done since 2001. My FEV1 baseline is 75% now, and I haven't seen that baseline since 2003. My life is fuller and more enjoyable than at any time in those years I was making my own decisions concerning my health care.

It's not all good news though - I am FORCED to do treatments. I am forced to exercise. I am forced to put my health first.

If I don't put my health first, even for a day, I feel it. I can no longer miss a treatment here and workout there and not feel a negative impact from that decision. If I want to be at my best, I have to do all my treatments; I have to get to the gym; I have to put my health first.

Back in the “good old days” I could miss a few treatments without consequence. Back in the “good old days” I could sit on the couch for days on end and still have the lung function of most of my peers. Back in the “good old days”, health could be more than a few notches down on my priority totem pole and I'd still be able to live a full and active life.

Not today.

If I miss treatments today, my lungs feel tight, my breathing is suppressed, and my lungs are junky. If I don't move around for an extended period of time, I feel incredibly lethargic, I get very achy, and taking a full breath is nearly impossible. If I don't put my health first and at the top of my totem pole, I wouldn't be able to take Mckenna to the park every morning; I wouldn't be able to tackle life with Mandi; I wouldn't  be writing in this here blog.

When I look back on the “good old days” I realize that though they were good, they weren't great. In all honesty, they were pretty pointless.

The love I had for life back then pales in comparison to the love I have for my wife today. The fulfillment I got from the "good old days" isn't even in the same universe as the fulfillment I get from being a daddy.  I'm able to write about the "good old days" with a new purpose, a purpose that wouldn't have been discovered if I continued to live in the "good old days".

Things would be a lot different today if I would have taken better care of myself in the "good old days". If I would have put my health first when I had the choice, maybe I wouldn't be forced to put it first today. Choices in life are a great luxury to have. When I had that luxury, I made really poor choices. Today, with that luxury gone, my only choice is to live a life full of treatments and exercise if I want to be the best version of myself each and every day.

I don't have many regrets in this life, but I do wish that I would have listened when they tried to tell me that the "good old days" pale in comparison to what God had in store for me.

I can promise you this - I would have made better choices.

A Tough Choice

Hey Ronnie, I know we've never met, but I have a lot of respect for you and no one better to turn to who could give me some advice. My son [Name Withheld] is 18... the magic age where I no longer have control. His PFTs have been really low for a couple months now, 65% today. Docs think we've mucked around enough and really want to admit him for a clean out. He will not give his consent because it will mean missing the first game of basketball season. Basketball is [Name Withheld] love and this is his last season with this group of boys that have played together since 2nd grade. I know this is very important to him, but waiting to treat can mean perminent lung damage.... I know you know the routine. I was hoping you had some words of wisdom that would help me help him. He has always been a very compliant kid, and knows his disease quite well. Sometimes there is resistance, but he usually makes the best decision in the end. This time Im not so sure. What is it like to be an 18yr old boy with CF? As that boy once yourself, what would you have wanted from your mother... should I push, or let him makes a dicision that could impact his health for years to come? Thanks for listening

......

That's a tough one for sure...

I can only think to give you advice through a story. My freshman year of high school, I earned the spot of a starting running back during my pre-season workouts. I worked hard all summer and leading up to the season all I cared about was football. I then had a check-up about 8 days before the opening game - my lung function had dropped. I was given a "choice" by my docs and by my mom - go in now for a short stay, work my butt off and be ready to go for the second game of the season, or delay the stay, possibly get sicker and end up being forced to go in and miss 2, 3, 4 games or more. I say "choice" because my mom had a good way of getting me to choose what she ultimately wanted most of the time. I think it was a healthy balance of love and fear that I had for her that was the trick 

I chose to go into the hospital and I ended up missing the first game of the year. The coach stood behind the decision of of putting my health first and held my starting spot for me upon my return. I worked my tail off in the hospital and ended up making it a very short stay. My lung function shot up and I felt great. The dangling carrot of that second game was out there, and for me, it worked! I went on to play in every other game that year.

Looking back on my regrets from when I was that age, I never once think about that decision. What I do think about are the times that I didn't put my health first. I have the "what-ifs" and "if only I would haves" that will pop up from time to time.

On the continuum of time, the start of a basketball season is but a speck of dust. Admittedly, it looks like a mountain range to your son, and that is completely understandable. I couldn't fault him for either decision that he would make as it's much easier to be a Monday morning quarterback sitting here today 

I can tell you this, the people in my life now are VERY thankful for the times that I put my health first. When I compare that first football game of the season to my wife's kiss or my daughter's snuggle, it really puts into perspective how insignificant the game, the sport and that time really was.

At 18, you're not only making decisions that will affect your future, but the future and happiness of others.

So, to finally answer your question...As a son, I always expected my mom to be loving, respectful and honest. Kids are always more open and responsive when their parents show empathy and not "I'm the boss" in this situation. (With that said, may I remind you that you are in fact the boss if he still lives under your roof and you're paying the bills).

Hope that little story helped prepare you for your conversation with him and please let me know how it turns out. If there is any other question I can answer or anything else I can do, please let me know!!

Fill to be Filled

Have you ever noticed how fulfilled you feel when giving your time to someone or something less fortunate? There was a time when I wondered what in the heck I was going to do for the rest of my life (like I'm sure most of us do) and generally it would end with something sports related or in a field that made a bunch of money. Problem was, I was looking at careers that would fill me and make me happy (so I thought). I wish I would have realized sooner that the only way to feel full in this life is to live a life that is filling to others.

My word of advice to anyone who feels empty or like "something is missing" is to volunteer and give of your time with no expectation of a return. The greatest times of my life are in service to others. Don't know where to start? Opportunities won't always fall right into your lap, but there are people all around you that need help. You just have to be willing to keep an open eye out for that person or situation and be ready to join and fulfill that need at a moments notice. If you're anything like me, your opportunity may come out of nowhere.

I used to have a hardened heart for the homeless. I would say "life is choices" when I saw someone begging on the street. It wasn't until God softened my heart and called me to serve at a homeless shelter that I started to see things a different way. Yeah, life is still made up of choices, and many times the homeless make terrible decisions that land them in their current situation, but, it's deeper than that. Their story isn't as black and white as I used to think it was. Sure, they made bad choices, but all that did was make them have something in common with me.

I've made terrible choices as well. The difference is that I've had people in my life that were willing to pick me up when I was down or be by my side to see me through a mistake that I had made. One thing I learned about many of the homeless - they had no one. They were one mistake away from being homeless. So there they were. No one to turn to. No one to pick them up. No place to go. And eventually, no one to be.

It was through that experience that I realized how important family was to the outcome of one's life. It was through that experience that I felt obligated to give my time to others who only get one shot at this life. I serve a God of second, third and eighty-second chances. The least I can do is give my fellow human a couple as well.

Gophers and The CF Life: The Similarities Are Astounding

For the past couple of weeks I've been playing a cat and mouse game with a critter that is getting oh so close to my garden. Before I get too deep, let's start from the beginning, let's go back in time about 2 weeks...

So I walked outside (to the side of my house) to some above ground planters, that Mandi and I planted cucumber and zucchini in, in order to do some pruning. I noticed that some dirt had been kicked up and the cucumber plant just looked a bit "off". At this point I thought that it was possibly the wind that had kicked the dirt up and shifted the plant enough so that it looked different. I went about my business and pruned both plants.

The next day as I was walking to my trash can, by way of the planters, I noticed that the cucumber plant was now a bit smaller (and not a result of my pruning). As I investigated further, I came to the conclusion that some bugs must have gotten into the plant and started nibbling away. I then brought out the bug spray and gave it a good dousing.

Then two days later when I was putting some recycling in the bin, I noticed that the entire cucumber plant was now gone! My first thought was that my neighbor was playing some sort of joke on me to be honest with you. Due to my very green thumb, I couldn't come up with many more answers other than bugs or pranks. That's when I noticed a mound of dirt about 5 feet away from the planter. Now, I'm no expert, but at this point I figured that there must be some critter making holes in my yard and then proceeding to eat it's way through my vegetables. I then noticed a very tiny hole in the dirt of the cucumber planter that after digging it up found it to be a much bigger hole. I didn't however see any critter.

The next day I noticed a new mound of dirt in-between the cucumber planter and the zucchini planter. Ok, I thought, this needs to be handled. I didn't want to lose my zucchini plant like I did my cucumber plant. Knowing that things were progressing with this little rat, or whatever it was, I new that I needed to kick my butt into gear. But it didn't. Could have done something that night, but I didn't. You can probably guess what I walked out to the next day.

Yup, the zucchini plant didn't look as vibrant as it did the day before. The dirt had been dug up and the leaves were already starting to wilt. I reached down, grabbed the plant and up it came. Not a root in sight. The little bugger actually ate all of the roots to the plant but had not yet made his way to the leaves or zucchini. I put the plant back down to grab Mandi and showed

her what had happened. After she checked out the damage and headed back in, I stood by the planter to decide what step to take next. It was then that I looked down at the hole this dude had dug and noticed his stupid nose pushing dirt literally 6 inches from my foot. Looking back, I wish I would have grabbed a shovel and done my best to "find" him with the end of it. I may have been able to take care of the problem right then, but I didn't. Instead, I picked up the zucchini plant and hastily tossed it into the trash can.

Then for the next week, I talked about how this critter, gopher to be exact, was making his way through my garden. I rehashed the story at least a dozen times and each time ended it with what I needed to do. See, by this time, he had moved on to another planter which is only about 10 feet from my main garden. I knew that I had to act in order to save the "prize" of my backyard. But, I didn't. Instead, I just talked about options. I told people who would listen that I really didn't know what to do. I mean, I knew something had to be done, but just what had to be done I did not know. I sat idle and complained even though I new the future. I knew, based on this gopher getting closer and closer to my full garden, and the destruction that had been left behind, exactly what was going to happen. It wasn't a matter of if my garden would be destroyed, but when. Yet, I did nothing. At this point, even though I didn't know what exactly needed to be done, I should have done something, yet, I did nothing. In fact, I didn't attempt to do anything. It felt like I was waiting for my garden to be destroyed, to then figure out what to do. Almost as if the garden being destroyed would somehow make this threat more "real". By that point of course it would be to late.

I could've acted a few days prior, but I didn't. I could've acted when I noticed a big mound of dirt and my cucumber plant destroyed, but I didn't. I could have acted when I was holding a dead zucchini plant in the air, but I didn't. I could've acted as the gopher made it's way towards my garden and proceeded to do what was almost a certainty at this point, yet, I did nothing. So what was it going to take to make me actually do something to solve this problem? Not sure, but apparently it hasn't happened yet. I just hope by the time I decide to act that it won't be too late.

So what exactly does this have to do with CF/Treatments/Life? Well, what do you think?

To be continued on Wednesday....