The Support of a (CF) Wife

Many of you already know this, but I have the best and most supportive wife in the world. I can't even begin to explain how much of a relief it is to have the support from my wife during times leading up to the hospital. Our family puts my health first, and obviously, we couldn't do that without her. I just wanted to show (mostly to give my wife the public recognition she deserves) what that support looks like in our family. This support happened to come through text messages as I was waiting at an urgent care for x-ray results requested by my pulmonary team.

I love you honey and your support means the world to me.

Treatment Time Support

I feel so blessed that parents and patients in the community actually think enough about my opinion that they continue to send questions my way. Some questions that I get are pretty common, but I've got to say, I've never had this one before. It's kind of surprising though because this is actually a GREAT question!! I want to hear from you guys though, what do you think??

I just have a quick question for you. When you were growing up, did your Mom spend time with you each time you did your treatments? I am feeling a TREMENDOUS amount of guilt since I am not able to spend time doing something with ____ when he does his treatments lately, especially the 5 nebs a day he's now having to do. He seems totally content playing his video games when he does his nebs and vest and said it doesn't bother him that I'm not hanging out with him. But I can't help but feel guilty. I don't want him to think he's dealing with this all by himself. Life just has been so flippin' busy lately, and my daughter has been a bit more needy too, which makes it that much harder. I guess I was just wondering if you would ever get mad at your mom and disappointed with her if she didn't have the time to sit with you during treatments. Any input or suggestions you could give me would be very much appreciated! 

Thanks for letting me vent. I couldn't think of a better person to ask this question to since you seem to credit your mom a ton for your compliance and good health as an adult! I just want _____ to feel that same way towards me when he's an adult, and I don't want to let him down. Thanks again, Ronnie! Hope you and your family are doing well and enjoying summer!

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We have to keep in mind that treatment time as I was growing was completely different. Until I was 14, I had one neb (albuterol) and I was hand pounded by my mom or step-dad as I didn't have a vest until the age of 20. So, our situations were very different. My mom and I certainly bonded during treatment time, but that's because she was beating me and we had no choice but to connect during that time 

When it comes to you and Tuck, I'd take him at his word. I know when I was playing my video games, the last thing I wanted was for my mom to bother me. There are certainly ways you can show him you're thinking about him during that time without being within arms length. From time to time maybe you make him his favorite snack and bring it to him? Maybe you surprise him with a trip to the ice cream shop after his treatment because "it means a lot to you when he takes such good care of himself"?

I would focus more on what you say and what you do for him outside of treatment time. Love up on him. Let him know how special he is. Be sure to tell him how much you appreciate his hard work. Be there to facilitate the great life that happens after treatment time. Most of all, let him know that he is taking care of himself for all of you, so you can enjoy time as one big happy family!

I think it's great that he is showing some autonomy already with his treatments. I'd stay out of the way and do what you can to positively reinforce that behavior.

Teenagers and Cystic Fibrosis

Question: My 15 yr old granddaughter. She has rebelled at times on treatments.Drs say it is age she will get better as she gets older. Were you always as good about it? Any feed back on this will help.

The doctors are correct in saying that it will get better with age. Teenagers in general are rebellious with or without CF. CF only exacerbates the problem as there is nothing more important in a teen's life than status and friends. Having CF and doing treatments can unfortunately at times interfere with these two things. I'm guessing that she has said more than once "I just want to be like my friends," or "I hate CF". Both of these are very common and very valid responses to having CF as a teenager. What she's going through is tough and is not at all fun.

What we must realize however that, "being like our friends", includes having the ability to do what they do. Whether we like it or not, this is made possible by our health. Not being at a good place with our health inhibits our ability to just be "one of the guys" (or in this case girls), but it's hard to see that as a teen.

We often think about treatments as a means to an end when we're sick. I encourage people to think about treatments as a means to an end when we're healthy. What I mean is this - we must be willing to do everything necessary when we're healthy to put ourselves in the best position not to be sick. Treatments need not be a response to sickness, but used in conjunction with wellness.

I use the analogy of a scale. On one side we have someone "sick" with CF and on one side we have someone "healthy" with CF. Now, if you had a rock that represented doing treatments, which side of the scale would you put the rock? Who do we as a community instinctively think about as "doing more treatments" than the other person? I would put forth that most of us would put the rock on the side of the scale with the sick CFer. This certainly isn't true for everyone, but from my experience, that would be my hunch. Now, each one of us must answer why we put the rock where we did and that will generally tell us about our view of CF, control and treatments.

As for me, I put the rock on the side of the healthy CFer. When I was a teen? Not so much. I thought only "sick people" did a bunch of treatments. Granted, I was doing two a day, but it was rarely willingly and not something that I looked forward to. In many ways, I fell into the trap of being "too healthy" with CF. See, in high school; my FEV1% was around 110. I felt and acted just like everyone else. The only time I thought about CF was during said treatment times and when I required a hospital stay due to an exacerbation (about twice a year). Apart from those times, CF never entered my mind. I felt some relief from my treatments, but I didn't feel THAT much.

What really made my lungs feel like a hundred bucks was football practice, or any other physical activity like basketball, baseball, running etc. That's another thing to point out - until I started playing sports year round, my FEV1% was nowhere near that 110% that I mentioned earlier. So in essence, I was doing a ton of treatments, 2-3 hours per day to be exact, just not the traditional treatments (nebs, vest) that we think about. I was doing additional treatments in the form of sports and exercise. To this day, nothing makes me cough more or produce more mucus than running, be it on the treadmill, street or football field.

My family supported me in many ways regarding treatments and CF care. I think a lot of the credit has to go to my mom for being quite possibly the biggest reason that I took such good care of myself growing up. She had quite a “unique” strategy – My house, my rules (I’m of course kidding when I say that it was unique). One thing I’ll say however is she delivered this strategy with complete love. I never doubted for a second that I, and in turn my health, was the single most important thing to my mom when I was growing up. I was an only child for quite some time, so my mom was able to focus all of her energy and time on making sure she did everything necessary to put me in the best position to succeed. This included running me around to practice, supporting me when I wanted to try a new sport and most of all, holding her line when it came to treatments. 

Here’s the deal though, she balanced that with great freedom. I had a very normal childhood. I could do just about anything I wanted to do in terms of sleepovers, extra curricular activities, etc AS LONG AS my treatments were done. And when I stepped out of line, she didn’t waffle or give me another chance; I faced consequences for not following the rules. She only had to keep me out of football practice one time to show me she was serious after I chose to rebel against treatments that particular morning.

All teens have something important to them. All parents find their children, including teens believe it or not, important. In my opinion, effective parents mesh what’s important to them with what’s important to their teen. There is one key thing to remember though – one is the parent and one is the teen. In a perfect scenario the parent and the teen can come to a mutual agreement about treatments and expectations. But, and this is a big but, perfect scenarios aren’t the majority. At some point, the parent must decide what’s more important to them, a perfect scenario or their teen doing his or her treatments.

There is hardly a fool-proof strategy when it comes to convincing teens that treatments are important or implementing a system that results in few missed treatments, there is however a great reward for parents, and teens, that manage to do so.

Ever Have One of Those Days?

You ever have one of those days? I can see all of you throwing up your hands right now saying “Uhh, YEAH!!!". And for those of you who don't know what I'm talking about - I'm talking about those days where you're running around like a chicken with its head cut off and just when you think the day is winding down something pops up. The days when you're at the post office and decide to use the self-service machine to “save time” and the woman in the front of the line decides to use said machine to get all of her postage and stamp each one of her Christmas cards individually. Yeah, that kind of day. The kind of a day where all you want to do when you get home is kick off your shoes, put up your feet and just hang out. The kind of the day that the thought of doing something active at the end of it makes you want to cringe. Do you guys know what kind of a day I'm talking about now?

Yesterday was that kind of day.

All day I knew that at some point I was going to have to get my butt to the gym. It was tough to get done everything else that I needed to get done, including treatments, but gym time felt like it was looming over my head. I made a commitment to myself and to my family that I would make my health my number one priority. A big contributor to my increased lung function and energy has been consistently getting to the gym. It's not that I love being there, I actually love leaving the gym, but I know it's what I have to do if I want to be the best version of myself. Still, there are days like yesterday. The kind of a day that even a priority in your life seems just too hard to accomplish.

When I finally got home from running around the city, the first thing I did was love up on my family. It was probably a little bit of a stall tactic on my end thinking that the further off I put the gym maybe it would go away. I asked Mandi what our plans were for last night (take note guys) and she responded with, “you're going to the gym”. I love that woman. I felt guilty about being gone a good part of the day and even when I was home not really “being” there, but Mandi made me feel at peace with it by saying those five words. It's so nice to have a supportive wife that is willing to recognize how important it is that my health needs to be our family's priority. Admittedly, it makes my life about 1000 times easier. And it's not something that I think we can expect out of our spouses either, it should be, but sadly it often times isn't. I think communication was key and is key for us in terms of setting priorities for our family. Mandi made it very clear that she wouldn't be a nag when it came to my health, but she also made it very clear that she would kill me if I didn't take care of myself (Duly noted). That made setting my priority pretty easy. Oh yeah, I did in fact make it to the gym and I had a very good workout.

I guess my main point of this blog though is to encourage you guys to not only put your health as your number one priority, but to be willing to do anything to be the healthiest version of yourself. This doesn't have to just be for CFers either. To you parents, start right now with instilling in your child that there's nothing more important than their health. Without good health, we don't have much. And we must make taking care of ourselves the most important thing in our life.

Don't want to start with health? That's fine. Here's my challenge for you. Do something today that you've been putting off. It could be cleaning the bathroom, running errand, doing an extra treatment or finishing a school paper, whatever it is, promise yourself that you'll get it done today. Because here's the thing -  both you and I know that once you do it, you won't regret it.

Thankful Thursday - Support the Freezers?

We can't stress enough how important it is in our own lives to slow down when things seem to be getting "fast" and just think about the little things that we're thankful for. We had 3 brave souls join us last week in expressing their thankfulness last week and we're hoping that more climb on board today! I have a little "Linky Tools" at the end of this post that you can use to join the party and link up your thankfulness post! Feel free to spread this around to anyone you know that may like to participate.

Mandi's List:

I'm thankful for freezers. This may sound like a weird thing to be thankful for, but let me tell you what, our freezer saves us a TON of money. I can't imagine if we had to buy and eat everything fresh! We'd have food going bad all the time. It also makes dinner time easy when you can just pull out some frozen veggies, frozen chicken and vwalla!

I'm thankful for the TVs at our gym. We have been really good at getting in 30-60 minutes of cardio every time we go to the gym and a big part of that is because the time flies by since we're able to just watch tv shows. It's hard to say, "Naa, I'm done" when you're doing exactly what you'd be doing at home, only getting a work out in at the same time.

I'm thankful for email. My family constantly has emails flying back and forth with pictures from the day, forwarding on updates from work, filling each other in on happenings. It makes me feel like my family is really close, even with my parents far away. It's a nice, quick and easy way to stay plugged into each other's lives.

I'm thankful for friends who have been there/are there! I have been chatting with several ladies on CysticLife, Facebook and the phone who are all going through the IVF process right now, or have recently gone through it, and man am I thankful. It is so nice to chat with others about their experience, hear what to expect, and have someone who can relate to what you're experiencing. It's very awesome to have people to chat with!

Ronnie's List:

I'm thankful that although I've had some coughing up blood issues over the past couple of days, my PFTs haven't taken that much of a hit and I may be turning the corner. I'm not sure what brought on the sudden case of hemoptysis since I have been feeling great these past few weeks, but I'm just thankful that it wasn't worse. It can always be a little touch and go during times like this- I'm definitely going however!

I'm thankful for my upcoming opportunity to speak to the awesome folks at the Stony Brook CF clinic in Long Island, NY on Saturday. I was invited to speak at their CF education day and I'm always thrilled to be a part of these types of events. They fill a much needed knowledge and social gap in the community that I'm just honored to be a part of. If you're anywhere near Long Island, I'd love to see you there on Saturday!!

I'm thankful for a CF team that trusts me. Although I'm coughing up blood and my PFTs dipped a bit, they trusted me enough to make the call whether or not I needed a tune-up. I'm confident that this little set back was just a minor blip in the road and I'll be back on my game in no time. I of course promised them to keep up my four treatments a day, continue with additional airway clearance through exercise and hop on Cayston ASAP (which I'll be thankful for if it arrives tomorrow). It's so comforting to have trust amongst myself and the team, but I have a feeling it stems from two things: They know I love feeling good and they know I'll do anything to feel good.

I'm thankful for support. I feel support all around us coming from it feels like 1000 different places and people. We have great families, first and foremost, but we also have amazing friends and an amazing community behind us. Throughout this whole IVF process, we've been able to connect with others who have gone through (or are currently going through) similar situations on CysticLife. It's nice to be able to throw any and every question out to them and know it will be answered promptly, honestly and with eagerness to help.

Thoughts heading into the Hole...

I thought it would be a good idea to piggy back off of Mandi's post and share with you guys what's going on in my little head in anticipation of this next hospital stay. Her post was quite the delight to read and just confirmed once again that she is my one and only. I've been very fortunate my entire life to be able to surround myself with friends that take CF "in stride" (Of course my family has been great too, but to be honest, where I come from, there's no choice in that matter). I've always felt that it was so important to have friends that "got it" but didn't care. Friends that would push me when I needed to be pushed and then would be right there to push when I didn't have the strength. I think I developed that screen in choosing friends by how I was raised. My mom never, AND I MEAN NEVER, let me use CF as a crutch or an excuse. I remember like it was yesterday coming to her as a youngster before school saying that I didn't feel good. Her response? "That's a good story, now put on your shoes cause you're going to school". I mean, I was a kid, give me an inch and I'll take a mile. Too be honest, not much has probably changed.

That's how all of this wraps back around to Mandi. She just never cared about CF. It came up in the first conversation that we ever had and I'm pretty sure we spent about 34 seconds on it. She was much more interested in my stories, or my likes, my family and my career. That's who I am. Now, that's not to say that CF hasn't played a major role in who I am today. It most certainly has. It's shaped how I react to those things that are most important in my life. So while I told her about my life experiences and my family, I was, in essence, telling her all about CF. I am a CFer, no getting around that. I have a disease. No getting around that either. But she was interested in how this diseased little CFer was living his life and nothing else much mattered to her.

I kind of got off topic there, sorry. This is about how great my wife is with me in the hospital. So first, obviously she just rolls with the punches. She knows I need it. She knows that we'd both probably rather be somewhere else. But she also knows that it's not the place that makes it special but the people who are there. She's done such a great job over the last couple of years of really making the hospital a special place for us to "get away". It's funny, cause we actually have way more interaction with other people while in the hospital (you guys know what I'm talking about. People coming in the room every 16 seconds). Somehow though, every time I'm in, she plans something or does something special that makes me feel like we're the only two people in the building. I really think it all comes back to, she just really doesn't care about the circumstances as long as "my man is there". And I'll tell you what, it's a great feeling knowing that the love of your life feels that way. There are very few people in this world that I can say with confidence "have my back" 100%, no matter what and Mandi would be at the top of that list.

As far as what I'm feeling going into this hospital stay (probably happening this Friday): I'm excited. I've always been pretty good at seeing the forest through the trees. The light at the end of the tunnel if you will. When it comes to the Hole, I know that it will get me close, if not all the way back to being where I need to be. When I say "where I need to be", I'm talking about being in a position where I can say with 100 percent certainty that I can stay on top of my game all by myself. Meaning I have the energy to do all of my treatments, get in all of my workouts and get enough rest to fight off infection. Right now, I don't feel that way. But here's the deal, I don't feel awful physically. In fact, it's rare that I feel awful heading into the hospital. I think it'd be a detriment to both my overall health and my lung function to wait until it got to that point. When it comes to the hospital I've always been VERY proactive. Shoot, I used to have them admit me with a 85% FEV1 cause I was used to 100%. I just never want to be in the position to say "if only I would have gone in sooner". So with that said, BRING. IT. ON!!

I've received many encouraging notes regarding this next hospital stay and I want to make sure you guys know how much it means to me. I appreciate your support and your prayers, but most of all, I really appreciate you guys cheering me on. It's really tough not to want to kick some major booty when I have a cheering section like you guys. So, wish me luck, stay in touch and I'm sure I'll be out of the Hole sooner rather than later.

**And just a reminder, some of you got the impression that I was already in. I am not as of this posting and it looks like the magical day will be Friday**

My New Year's Resolution: Getting Back into the CF Routine

I have a new year's resolution...kind of...that I wanted to share with all of you. This year, my resolution is to be more supportive. Now, I feel that I am extremely supportive by most standards, but I have realized this holiday season that I'm not exactly doing my part to get Ronnie back on track with his treatments and exercise. As most of you know and experience, the holiday season has a way of throwing routines out of whack. For Ronnie and I, this is very much the case. We haven't gotten back into our work out routine since he got out, we've been running around and having to squeeze in shortened treatments and even skipping a few here and there. While this is understandable and even somewhat acceptable for a week, but it's inexcusable beyond that. (Although I must say that when I say he's been slacking on treatments, I mean some days only getting in 3 or 2 and a quick 3rd. He never missed a morning or night.)

Now comes into play my new year's resolution...I think I need to step up my support in order to get back on track, together. I have to admit, ever since my half marathon, I have NOT felt like running or even really working out. But I need to remember, it's not so much about what I do or don't feel like doing. I need to say, "we're going to the gym" regardless, to encourage Ronnie to get back into the workout groove, even if I don't so much feel like it. He did that for me A LOT these last 6 months, and I need to do the same for him. We are a team. So even when I don't feel like working out for ME; I need to feel like working out for HIM. In regards to his treatments, I should come clean. You see, this last week, I have been VERY selfish. I have wanted to run around all day, keep up with my parents agenda, done what I wanted to do. But I need to break that streak and make sure that I put Ronnie's treatments back on my priority list, and right at the top. Ronnie would have been a lot better about his treatments this week if I didn't demand he follow my agenda.

I know it's not quite the new year yet, but it will be before I post again, so I wanted to make sure I verbalized my new year's resolution so that you all would hold me accountable and ask us how we were doing on getting back into our routine. Have you all thought about your new year's resolutions? Any good ones you've thought of? Any you want to come clean with so we can hold you accountable? I want to hear them and PLEASE ask us how we're doing getting back into the workout and treatment grove after this holiday season.