Wednesday, July 3, 2013

Some Feathers May Get Ruffled

Ever so often, I'll write a blog on here that will ruffle the feathers of some in the CF community. It's rarely, if ever, intentional, and my intent is never to upset my readers or make them feel bad. It's something that goes along with the territory I guess. I think an ex-preseident of ours said it best: 
“You can please some of the people some of the time, all of the people some of the time, some of the people all of the time, but you can never please all of the people all of the time.” Abraham Lincoln
Another thing that goes along with the territory is negative responses from some of my readers. These include, but are not limited to - personal attacks, attacks on my family, unfounded accusations and attacks on my faith. 

Fortunately, the positive reactions outnumber the negatives ones about 100 to 1. I always keep that in mind when someone decides to take it upon themselves to try and "hurt me" because I "hurt them". 

I'll tell you what the best medicine is though, it's getting responses like the one below to my blog yesterday:
Mama: Hi Ronnie, I just want you to know we are so grateful for you and how encouraging you are! [Son's name] is doing his treatment that he does not want to be doing and read your post about how you did not do your treatment like you should of and he said, "Man, mom, Ronnie is so encouraging!!!". Thank you sooooooo much ! 
Me: I'm so glad that he can find encouragement from some of my posts. My hearts desire is that others, the next generation, learn from my mistakes and don't make the same choices that I did. If I can change someone's life as a result of my stupidity, I'm glad to do it. Thank you for sharing that with me. Made my day!!! 
Mama: Are you kidding, you just helped me stop nagging, I get tired of hearing myself, too.
That's EXACTLY why I do what I do. I've been very upfront about all of the bad choices I've made. I talked about the different tricks that CF can play that I fell for hook-line-and-sinker. I write because I hope that people like the Mama above and her son are reading. I hope that something I say can help them make better decisions than I did growing up. Simply, I hope that the next generation treats themselves much better than I did.

I'm often reminded by this quote of a fellow cyster in the community that I think put it best:
"I wanna help as many CF'ers as possible. It's therapeutic to think my failure could be someones success." - Michelle Matta
I love it. After hearing that, I just knew that she had to write a guest post on RSBR, which she did, here. I reminded her however that failure only happens when we give up and it's an outcome of deciding not to try. Both failure and success comes in many forms and is different for each person involved. Fortunately, I've rarely seen anyone in the CF community flat out fail!

Lastly, I'd just like to thank all of you who send kind notes, emails and encouraging comments. You keep me going. I'll continue to write as along as there are people out there who will read, and hopefully, leave this blog feeling encouraged, motivated and/or inspired. 

I've come to realize this -  The feathers of my generation may get ruffled while I encourage the next generation to fly higher and straighter at any cost.

Tuesday, July 2, 2013

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.

Monday, July 1, 2013

IVF Update

...There isn't really one - Ha! I just don't really have much else to write about, and figured some of you might be curious where we are in the process. I think we posted about taking some time off. I needed a break from being on meds. With the exception of a day here or there, since November, I was on some type of IVF med. I was feeling a little nutty, mentally and physically. I wanted to have a little break from the injections, hormones and stress that comes with an IVF cycle, let alone the back to back to back cycles.

We decided to just take a month off. It feels great to not be on any meds. I feel like myself again. It feels so nice to not have the emotions of a crazy lady, control over my body, and to just not worry about what medication and procedure I have when. My time off has felt incredibly freeing to be honest. Almost like a summer vacation. That's how I know we made the right choice for our family.

A month off sounds like nothing, yet it sounds like a lot all at the same time. When you want and crave to be pregnant again. When you want so badly to have another baby, a month sounds like an eternity to postpone it. It feels like you are putting your dreams on hold, forever. You think about the due date. You think about how 5 more weeks will feel, waiting. You hate putting off the unknown for another month. You think to yourself, "well, if we take a month off, and next time doesn't work, then we're looking at another potentially 4 months before we are pregnant...4 months?!" And I can tell you, if 1 month feels like a long time...4 months is BRUTAL. It's a total mind game. 1 month sounds like an eternity to wait to start your next chance at your dreams.

But at the same time, 1 month is so short. In the big picture of life, 1 month is nothing. I know this. Mentally I know this. When the kid(s) is 15, will I remember this month? Will I care about this month? Probably not. And I know that. So we went ahead with the decision to take a month off.

And what's crazy, is the month off is almost over...Where did the time go? It sure didn't feel like an eternity once we got into it.

Our month off is almost over. And we will be diving back in with both feet. I feel really rejuvenated. Refreshed. I'm ready to take on this next cycle. We will share details at some point. It will be another long protocol of meds, so we have a ways to go. We aren't yet sure when/how we plan to share all the details. But please keep the process in your prayers. Pray for patience (for me) and pray that God provides us with exactly what He has planned for our family.