My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25^th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

•      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
•       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
•       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
•       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
•       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
•       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
•        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.

Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: http://www.findingtruth1.blogspot.com/ She would also love to hear from you. Her email is ashleycoleman87@gmail.com. 

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.

So Why Don't You Exercise?

E-mail: Hey Ronnie-I am pretty new here...but have been following your blog for the past couple of weeks. I am sort of in a similar situation. For as long as I can remember I have pretty much had one IV clean out per year which would last 2-3 weeks and leave me feeling great. However, this past fall I was on IV treatment for a full 10 weeks...it was hell and even after that was all over my PFT's were still at an all time low. About a month ago I went to see my doc and my FEV1 was at 43% and he is trying to convince me to go on IV again. So basically all of this has scared the crap out of me. Since then I have been working extra hard to try and improve my PFTs without IV meds. I have always been really compliant, but I've added even more neb treatments & chest pt sessions to my routine. My efforts have shown some improvement in my FEV1...now up to 48%...but still not enough to make me happy.

The one thing that I can't seem to get on track with is exercising, and I think this could really make a difference. Some of the problem is because I am lazy...but most of it is because I feel like I have no time! As it is I feel like I have very few hours a day where I am not doing something CF related. I try not to let CF consume my life, but recently that's how I feel. Sometimes it seems like I spend my entire day doing treatments just to go to bed and wake up and do it all over again the next day. So I am sort of having a quality of life issue. I was just wondering how you manage to get in so much exercise time plus regular treatments...and still feel like you have somewhat of a life...haha?!? I should mention that I am not working right now...so I don't have that to worry about...but I do need a lot of sleep (to feel totally rested I need at least 9 hours a night.)

Anyway, sorry to dump that all on you, but I think what you are doing is great and very inspirational! That is a great improvement in your PFTs...I am very happy for you!! Anytime I am read your blog I keep telling myself that I just need to bite the bullet and do it! But easier said than done...{Name kept private}

Response: Hey {Name kept private}-Thanks for the message and trusting me to give you some advice. First, here are some harsh realities:

1) Hardly anybody WANTS to work it. It is only a select few people that actually have the desire to work out everyday.

2) You NEED the benefits of working out more than most people

3) Most people CLAIM to not have the time to work out

4) Without a job, you have MORE time than most people to workout

Now that we have those out of the way, let's talk about some solutions. First, you need to be convinced that working out is going to better your quality of life AND lengthen it. So while you, like the other 99% of the population, don't feel like working out, you have to realize that it is more important to you than that 99%. The key is just to start small and grow from there. Even if you can commit just 30 minutes a day to start, that's all it would take.I know however that you can commit much more, so let's look at how much time you actually have in a day. First, you get your 9 hours of sleep from 10pm-7am. Now your left with 15 hours. Take out 4 hours for treatments, leaving you with 11 hours. Now subtract 2 hours for meal prep and eating, leaving you with 9 hours. If you start working out 30 minutes a day, you'll be left with 8 and a half hours. That's 8 1/2 hours to do anything you want! Most people in the "real world" probably only have 2 hours at the most to do anything that they would want. You and I are actually very blessed with the amount of time that we have for our own "stuff". Think about people who work a 9-5 and then come home and have to devote their "free time" to raising a family AND working out.

So I hope you see by the last paragraph that you actually have PLENTY of time per day. Now, with the laziness. Sometimes this is the toughest thing to overcome. Here's some tips: First, commit to a small amount of time per day until you are completely comfortable and committed to that time. Once you are in a good routine, you can bump it up by 15 minute increments. Second, is there anybody that you can walk/run/workout with? It of course makes things easier if you have a motivational and accountability partner. That way the days that you are feeling "lazy" there is someone around to kick your butt into gear. I also believe that it is best, and most important, to workout on the days that you have no desire to. Really concentrate on pushing yourself on those days. When you're finished, it is more rewarding, and think how easy it will be to go on the days that you are motivated.

Lastly, I am a huge advocate for hospital stays. They really help me and I know that for ME, it is what I need. I've never done well with home IV's and the hospital forces me to rest. There are some countries around the world that make their CFers go into the hospital 3 times a year, and they usually have better longevity rates. I usually go in whether I'm feeling sick or not. Because you have to remember, once your lung scars or dies off, that's it, it's gone and it's not coming back. By staying one step ahead I think you put yourself in a better position to avoid that.I hope this helps. Sorry for the long response, I just wanted to cover everything. If I missed something or didn't answer one of your questions, please, let me know. Also, I wanted your permission to put your questions and my response on my blog www.RunSickboyRun.com. I won't use your name and I think it could be beneficial for others to see.

Please keep me updated with your PROGRESS cause I KNOW it's coming.

Do Life,
Ronnie

50% is not going to cut it

Out of all my goals that I set out to accomplish last week, I'd say my rate of success was about at 50%. That's simply not going to cut it. If my ultimate goal is to be the absolute healthiest I can possibly be, knocking out half of my mini-goals will have me falling short every time. Good thing is that I'm able to look back and see what I can adjust from last week to try and make sure it doesn't happen again, bad thing is I can still feel last week this week. So let's go through my goals and see how I did and why I came up short:

I refuse to miss any treatments. My middle day treatments always seem to get caught in the crossfire when things get busy. When this happens, I generally feel like dookie at the end of the day and my lungs get super tight. Even with that foreknowledge I'll still put off my middle treatments for some reason. Doesn't make sense. This week, I can't afford to do that. I need to stay on my game by staying on top of my treatments.

I'd say I was 3/7 (42%) on this one. I REALLY wanted to do all 4 treatments every single day (which did happen Monday, Tuesday and Wednesday), but I ended up only doing 2 Thursday, 3 Friday, 2 Saturday and 2 Sunday. I wish I could tell you that "life got in the way" but I can't put it all on that. I did have the opportunity to squeeze in another treatment each weekend day, but I decided to put other things first. I could have brought my vest and compressor down to Tucson on Thanksgiving day, but I chose not to. Excuses 1, Ronnie 0.

I will go for a run everyday. My runs have been going well for quite some time now and I refuse to let this crazy week derail the train. Lately I've been running every other day to let my legs rest, but have been going on long walks or bike rides on my "off" days. This week, I want to run every single day. I want to run every single day to make sure my body knows who is in charge and even though he's not going to feel like lacing up his shoes and hitting the road, he's GOING TO DO IT!!

You'll see a reoccurring theme happening here. First three days of the week were good, last 4, not so good. I did not run at all after Thanksgiving until today. I still got in some bike rides and my morning walks, but that wasn't my goal. My goal was to run and that I did not do consistently. I can feel it this week as my mucus is thicker, darker and generally harder to get up and out. Excuses 2, Ronnie 0.

I will not forget to remember all that I am thankful for. This shouldn't be too difficult to stick to as Mandi and I have made this part of our daily lives, but out of any week of the year, I want to make sure this isn't the one I forget to be thankful. If I started listing everything I had to be thankful, we'd be here until next year, but I definitely want to be more vocal about it his week. I want to make sure the people in my life know how thankful I am for them.

I'd have to say that I nailed this one. I don't think a day goes by that I don't voice how thankful I am for my wife, family, friends and life. I was able to reflect even more on that this holiday weekend, but in general, I'm a very thankful guy. Excuses 2, Ronnie 1.

I will not overeat on Thanksgiving Day. Now, I don't want you thinking that I'm watching my weight (although I probably should be); Thanksgiving Day and I have some history. I had my first ever full intestinal blockage in 2003 on Thanksgiving Day and it was not pretty. I won't go into details right now, but I'll try to write about it this week. Long story short, know when to say when when it comes to turkey.

I'm proud to report that I did not overeat. I had seconds, but they were a small seconds. I even managed to throw away some dessert after I started feeling full. With my history of stomach blockages on Thanksgiving, overeating is not something I can afford to do. Excuses 2, Ronnie 2.

They say a tie is like kissing your sister, but I'd rather that than be shut out 4 to nothing versus Mr. Excuses. It looks like I'll have something to work on for this next holiday week coming up shortly. I can only hope that I do better.

Karen's Lung Function Climb (49% to over 100%)!!

Guest post by Karen Vega

I want to start out by thanking Ronnie for inviting me share my story by guest posting on his blog. My name is Karen, I’m 29 years old and have 1 ½ year old twin boys. I’ve shocked quite a few people, myself and doctors included on my drastic increase (75% increase in volume) in PFT’s over the past 10 months. Here’s a quick background on me and what brought about the change.

Up until college I always had “mild” CF. I’ll admit that I wasn’t the best at being compliant with my therapies during high school, college and even beyond. I just wanted to live “normal” and CF was easy for me to ignore at that time in my life. It wasn’t until late in college that I felt my CF slowly progressing and I needed IV’s for the first time. After I graduated and entered the workforce I wound up on IV’s every 6-8 months. My PFT’s were decreasing and I just accepted that this was the progression of the disease. When my husband and I decided it was time to start a family I talked with my doctors who gave me the o.k., had a tune up and at that time was holding steady with a FVC 3.67L (88%) and FEV1 - 2.54L (72%). To everyone’s shock & surprise I found out I was having twins (although they are in the family I just never thought about it), which scared a lot of people, my doctors mostly, but overall I had a pretty normal / easy pregnancy. I did wind up with an exacerbation at the end of my pregnancy and as soon as the boys were born I was on IV’s again.

I had a really rough first few months with them at home. Besides the normal new mom of two tiredness, I had the flu, kidney stones and laryngitis all in an 8 month period. My PFT’s plummeted to an all time low FVC 2.50L (64%) and FEV1 1.56L 49%. This really scared me and I knew something (me) had to change drastically. I had to find the energy and time to really commit to bringing those numbers back up. I knew I had to start exercising my lungs. I started slow, swimming 2-3 times a week. It took me about a month or two to get back into enough shape to even swim ¼ mile without getting winded. Then I started light jogging and 4 months into it I was up to a mile of jogging and ½ mile in the pool. After another round of IV’s last December (and let me add a PICC and two 1 year olds does not mix) I was starting to feel much more energized. I saw a post from Jerry Cahill about joining Team Boomer for this year’s ING NYC Marathon and I impulsively signed up. This was the kick in the butt that I needed.

I’ve been training for the Marathon since April, 5 months now. I’m up to running 28-30 miles a week with my longest run so far of 13 miles. I don’t run straight though, I take walking breaks usually every 2.5 miles or when I feel I need to. It’s not the speed that matters to me, it’s the distance and endurance. I never, ever thought I would be doing this a year ago.

Three weeks ago I had a clinic appointment and my PFT’s were FVC 5.36L (129%) and FEV1 3.71L (106%)! I couldn’t believe it. I still can’t believe it. I haven’t been in the 100%’s since as far back as I can remember. My doctor said she’s never seen results like this and that I must have a tremendous lung reserve. I haven’t changed any medications and haven’t been on antibiotics since December. The only thing that changed was me starting to run, run a lot.

Exercising was always something I had an excuse not to do. But after actually seeing my results I don’t have anymore excuses. Now I’m not saying everyone should go out and run a marathon nor do I think my results are typical. But I do think that everyone, CFers especially, would benefit from any type of physical exercise to the lungs. No matter how slow or how many breaks you need there is such a sense of accomplishment at the end.

I recently started a blog mostly about my training but about my life in general. Check it out the post I’ll be writing on Sunday 9/12 after I finish a 15 mile run! And make sure to check back after Nov 7^th… after I complete the marathon!

http://www.doublethelovehalfthesleep.blogspot.com/

And if you are able, please check out my First Giving Page for the NYC Marathon. http://www.firstgiving.com/karenvega

Thank you all for taking the time to read my story. Wish me luck on Nov 7th!

Note from Ronnie: I just wanted to give a big thank you to Karen for writing an outstanding guest post for RSBR. Her story reminds me a lot of my own. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on. She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Karen your encouraging comments as well as any questions you may have!

If you are interested in writing a guest post for RSBR, simply send me an email with a little bit about yourself and what you'd like to write about.

Another Great Positivity Blog

This is a blog by a fellow cyster, Lauren. It's actually in response to an amazing blog written by Piper just a few days ago. I highly encourage you guys to read through the start of this post and continue to read it by clicking over to Lauren's blog.

A CFer who I is listed for transplant and who I respect and admire so much, Piper, recently posted a blog which you can read HERE . She discusses positivity and questions how CFers, at different stages of the disease, can understand it. She got me thinking about how all CFers as well as non-cfers can universally understand each other's take on being positive. Before I begin my discussion I want to make a Disclaimer that this blog is in no way meant to offend anyone but rather to bring together the CF community in discussion.

First let me make a couple points:

1. CF is a confusing disease in the sense that it affects everyone differently. There are many factors contributing to this difference including environmental factors, upbringing, bacteria, access to healthcare and technology, age, biology, genetics (both with the CF gene and others), compliance, lifestyle, and just plain luck. Some people with CF may appear perfectly healthy, some run marathons, some have never been in the hospital, some have received transplants and are living healthy lifestyles, some live on oxygen every day, some spend half of their year or more in the hospital, some are preparing for transplants, and unfortunately still some don't make it past the age of 16, or 20, or 30 (and we pray for the families and lives of those people every day). The fact is, it affects everyone differently and although there are some people who are non-compliant, there are also people who try their best to be healthy and still end up sick.

2. It has been my own personal experience that if I do everything I am supposed to as far as compliance and exercise, that I am one of the "lucky" ones. But this is taking into account that I go to clinic and have been admitted to a world renown hospital in Boston, I was diagnosed very young (although not at birth), I have been lucky enough to always have good insurance that enables me to have the best treatments possible, I live a lifestyle that is not detrimental to my health (i.e. I have not yet begun to work full time), and I am young. I have had medicines like pulmozyme and tobi for the majority of my life, I have had access to the vest since I was 7. Yet, before I started to be religious about doing my treatments and exercising, I was in the hospital two or more times a year for 2 or 3 weeks at a time (and not just for routine things, I've had severe hymoptisis, i've been on oxygen, been to the ICU, been so sick I could barely talk, etc.) I also had my fair share of skipping treatments (sometimes for a week at a time) of cheating (dumping out my nebs, shortening my vest, not taking my pills) of not exercising, of being lazy. And I saw, as a direct result of that, a lot more time spent feeling sick and being in the hospital.

3. Although it is difficult to compare someone with CF who is virtually symptomless and someone who is getting new lungs, there should still be respect for the lives that we all live. There is still a baseline of numerous amounts of treatments and therapies that all CFers must do to keep themselves healthy. The disease is still progressive and just because someone may be healthy now, it doesn't mean their disease might not take a turn for the worst at any moment. (And vice versa, it doesn't always mean that just because someone is unhealthy now they can't get better)

I think that as a CF community we all need to respect the fact that our disease affects each of us differently, sometimes we don't have control over it, but that doesn't mean that we should ever stop trying to make ourselves better, like Piper said "here's to trying." We can still be inspired by each other's fights even when one of us is sicker than the other if we respect and understand how differently CF can affect some people. I stress compliance and exercise a lot in my blog because ...

To read the rest of Lauren's great blog, please click here.

So Why Don't You Exercise?

With so many new readers popping up I've decided to start re-posting some of my favorite blog posts every once in a while.

E-mail: Hey Ronnie-I am pretty new here...but have been following your blog for the past couple of weeks. I am sort of in a similar situation. For as long as I can remember I have pretty much had one IV clean out per year which would last 2-3 weeks and leave me feeling great. However, this past fall I was on IV treatment for a full 10 weeks...it was hell and even after that was all over my PFT's were still at an all time low. About a month ago I went to see my doc and my FEV1 was at 43% and he is trying to convince me to go on IV again. So basically all of this has scared the crap out of me. Since then I have been working extra hard to try and improve myPFTs without IV meds. I have always been really compliant, but I've added even more nebtreatments & chest pt sessions to my routine. My efforts have shown some improvement in myFEV1...now up to 48%...but still not enough to make me happy.

The one thing that I can't seem to get on track with is exercising, and I think this could really make a difference. Some of the problem is because I am lazy...but most of it is because I feel like I have no time! As it is I feel like I have very few hours a day where I am not doing something CF related. I try not to let CF consume my life, but recently that's how I feel. Sometimes it seems like I spend my entire day doing treatments just to go to bed and wake up and do it all over again the next day. So I am sort of having a quality of life issue. I was just wondering how you manage to get in so much exercise time plus regular treatments...and still feel like you have somewhat of a life...haha?!? I should mention that I am not working right now...so I don't have that to worry about...but I do need a lot of sleep (to feel totally rested I need at least 9 hours a night.)

Anyway, sorry to dump that all on you, but I think what you are doing is great and very inspirational! That is a great improvement in your PFTs...I am very happy for you!! Anytime I am read your blog I keep telling myself that I just need to bite the bullet and do it! But easier said than done...{Name kept private}

Response: Hey {Name kept private}-Thanks for the message and trusting me to give you some advice. First, here are some harsh realities:

1) Hardly anybody WANTS to work it. It is only a select few people that actually have the desire to work out everyday.

2) You NEED the benefits of working out more than most people

3) Most people CLAIM to not have the time to work out

4) Without a job, you have MORE time than most people to workout

Now that we have those out of the way, let's talk about some solutions. First, you need to be convinced that working out is going to better your quality of life AND lengthen it. So while you, like the other 99% of the population, don't feel like working out, you have to realize that it is more important to you than that 99%. The key is just to start small and grow from there. Even if you can commit just 30 minutes a day to start, that's all it would take.I know however that you can commit much more, so let's look at how much time you actually have in a day. First, you get your 9 hours of sleep from 10pm-7am. Now your left with 15 hours. Take out 4 hours for treatments, leaving you with 11 hours. Now subtract 2 hours for meal prep and eating, leaving you with 9 hours. If you start working out 30 minutes a day, you'll be left with 8 and a half hours. That's 8 1/2 hours to do anything you want! Most people in the "real world" probably only have 2 hours at the most to do anything that they would want. You and I are actually very blessed with the amount of time that we have for our own "stuff". Think about people who work a 9-5 and then come home and have to devote their "free time" to raising a family AND working out.

So I hope you see by the last paragraph that you actually have PLENTY of time per day. Now, with the laziness. Sometimes this is the toughest thing to overcome. Here's some tips: First,commit to a small amount of time per day until you are completely comfortable and committed to that time. Once you are in a good routine, you can bump it up by 15 minute increments. Second, is there anybody that you can walk/run/workout with? It of course makes things easier if you have a motivational and accountability partner. That way the days that you are feeling "lazy" there is someone around to kick your butt into gear. I also believe that it is best, and most important, to workout on the days that you have no desire to. Really concentrate on pushing yourself on those days. When you're finished, it is more rewarding, and think how easy it will be to go on the days that you are motivated.

Lastly, I am a huge advocate for hospital stays. They really help me and I know that for ME, it is what I need. I've never done well with home IV's and the hospital forces me to rest. There are some countries around the world that make their CFers go into the hospital 3 times a year, and they usually have better longevity rates. I usually go in whether I'm feeling sick or not. Because you have to remember, once your lung scars or dies off, that's it, it's gone and it's not coming back. By staying one step ahead I think you put yourself in a better position to avoid that.I hope this helps. Sorry for the long response, I just wanted to cover everything. If I missed something or didn't answer one of your questions, please, let me know. Also, I wanted your permission to put your questions and my response on my blog www.RunSickboyRun.com. I won't use your name and I think it could be beneficial for others to see.

Please keep me updated with your PROGRESS cause I KNOW it's coming.

Do Life,
Ronnie

Body and Soul of a 65 year old

6:30am: I think I'm getting older and older by the day. I've often told people that I have the soul of a 65 year old, but when I'm trying to get out of bed I'm pretty sure I have the joints and body too! It just feels sooooo good to lay there. Problem is, laying there is doing nothing positive for my lungs. I decided that I would do the gym this morning and get that out of the way cause I know it's going to be a crazy work day. It was arm day which as you is one of my favorites. My shoulders were actually giving me some problems this morning though so I actually cut out two of my tricep lifts. Both of the lifts (overhead tricep extension and dips) put unneeded strain on my shoulder and I got a good pump already from the other lifts. I really like getting my workout over and done with in the morning just sometimes I don't have the time due to other obligations. Since I still need to eat and do my treatments when I get home from my morning workout I can count on staying around the house for at least an hour. That's why I usually do Jezzabel's walk in the mornings cause it only takes around 40 minutes (and I cough a little bit more...and can spit it on the ground). Anyway, glad I've got the gym out of the way, now I just need to figure out what sort of cardio to do later.

So the rest of the day got sidetracked with a bunch of work and excuses. I WAS going to do more cardio but Mandi's brother grilled up some meat just before I was going to take off. I couldn't turn that down right? Then I WAS going to do cardio after dinner but I ate too much and felt super full. I'll tell you what, excuses aren't going to make these lungs any better. If I get sick I can't blame the excuses, I'll only have me to blame.

Great Post on Exercising and Running

I really recommend that you check out this blog post by Chic Runner. She has compiled a great list of how to put yourself in the best position to run/exercise. I highly suggest you check it out!!!!

http://www.chicrunner.com/2009/05/starting-out.html

Beneficial Email Exchange with a Reader

I think that everybody can gain something from reading this email exchange. This is my correspondence with a reader of my blog. It is used with permission. Enjoy!

Email:

Hey Ronnie-
So you are not going to be too happy with my progress over the past week, well I guess I am just not too happy with myself. Last week was rough in terms of exercising. I had an extremely busy week getting ready for the Brooklyn Great Strides walk which was on Sunday. I also decided that it would be a good idea to have all my family/friends over to my house for a BBQ after the walk. Well it turns out that everyone was extremely enthusiastic about the walk this year…in terms of participating and donating, which was absolutely great!! But I also ended up with about 50 people coming over…and on top of that it rained… so the BBQ became an indoor event…and let’s just say I am a perfectionist who gets very easily stressed out!!! But all in all it was a really great day…we still walked ponchos, umbrellas and all! Everyone was a little drenched but had a lot of fun!

On top of that 2 days before the walk was my boyfriend’s birthday. He is a huge hockey fan, specifically Rangers fan so I decided that it would be a good idea to make him a Rangers birthday cake. The good news is that the cake turned out awesome! The bad news is that it took about
2 whole days of my life to make it…haha. Bottom line, I only got moving
2 days last week, a 3.2 mile bike ride one day, and a 3.5 mile walk another….boooo!

So I know that these are all poor excuses, which I am not buying from myself, and I hoping to make this week better. It has been raining in new York for 5 days straight now, and looks like it will continue for 5 more which is a bummer because that kind of knocks out the outdoor exercise…but there is still the gym. Also, I am having a PICC placed on Friday afternoon for another round of IVs….fun stuff! So, I was wondering if you have ever kept up an exercise routine while on IV? Usually I am pretty knocked out the first week of it, so I don’t know if I’d really be up for anything strenuous…but I’m thinking just slow-paced long walks might do the trick until I am feeling a little better.

Also been doing a little better about my sleeping schedule. Getting to bed by 10 is really a challenge for me…but 11/11:30 is working out well right now. That’s actually where I am headed now…

Talk to you soon!

My Response:

It’s certainly most important that you recognize that you are not happy with your own effort. The great thing is that you are the only one who can control that effort so it is literally and completely up to you. I will be here as a support mechanism and do anything and everything I can do to give you tips and motivate you. Ultimately, it is up to you to get it done, whatever “it” may be.

So let’s look at the last week. Bottom Line: Sometimes life gets busy and we can’t always control that. We have obligations other than ourselves to attend to and that is ok. Don’t beat yourself up for being a good friend, girlfriend, daughter etc…Believe me, there has been days in my life these last couple of months that there was just going to be NO WAY of completing my full exercise routine. Here’s what I think the key is though: DO SOMETHING. It doesn’t matter if that something is walking or jogging half a mile or going to the gym and walking on the treadmill for 30 minutes. The battle is never doing it once we start, it’s the actual starting it part that is hard. There are times where me night just gets super busy and if that happens, instead of walking 3 miles, I’ll just do one. Or I’ll do the stair stepper for 15 minutes.

The key is just to get your body moving. You’re body will start to expect to do something and you will start to form a craving for it and actually feel weird if you miss a workout. We are creatures of habit. Make sure that your habit is doing SOMETHING everyday, no matter how short or small.

And let’s not forget, you did a 3.2 mile bike ride AND a 3.5 mile walk! You know what I call that in terms of comparing it to the week before: PROGRESS!!!! Now here is your challenge, for the next 7 days, do SOMETHING everyday. It doesn’t matter if that something is walking up 10 flights of stairs at a local building and it only takes you 5 minutes. You are letting your body AND mind know that you WILL train everyday no matter what. Exercising is just as much of a mentality as it is a physical thing. If you set aside a small amount of time everyday, eventually that will become a habit. And like I said before, you will start to crave that habit and you will see the benefits of having a GOOD habit in your life.

As far as a PICC line and exercise goes, for me, it has never been a problem. When I first start IV’s in the hospital, I too feel like doodoo, but I do focus on at least walking around the unit a couple of times a day. Usually by the second week I am able to do a fast paced walk outside of the hospital and by the third week, I am doing stairs or jogging. The doctors have never told me to back off because of a PICC. So again, I would try to do something everyday while you have your PICC and just play it by ear as to how strenuous it is.

I’m glad to hear you are getting to bed earlier. That is a HUGE part of this whole process. I promise that as you start to do more, you will be able to go to bed even earlier yet. Just make sure you’re not hitting your snooze button 100 times in the morning!

Good Luck!! I KNOW YOU CAN DO THIS! I’m excited to see what the next report will bring!

Do LIFE.