The Ten Things That Make My (CF) Life Easier

This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.

16. Good Veins- Having hoses running through my arms has given me the privilege of avoiding multiple sticks most of my life (except this time). I'm not sure if it's something I've done, or just inherited, but I do know that they have made my CF experience more enjoyable. I've had 30+ PICC lines though so who knows how much more they can take.

15. Foot Orthotics- The jury is still partially out on how much the orthotics will help me maintain my running schedule, but so far, so good. I haven't had any major pain to speak of since getting them made for me (Thank you POA and Lindsey).

14. Gyms- I've lived in Arizona my whole life and so far it's been 100+ degrees every summer. That's certainly not optimal outside work out weather. Luckily for me the concept of indoor gyms has been around since before I was born and I have taken full advantage of them. I've had a gym membership since I was 16 years old and although I have had several seasons of my life of consistently going and not going, the gym seems to always call me back to her.

13. My Friends- I've been blessed to always find myself with good friends. Friends who are there for me when I'm sick, but don't treat me like I'm sick when I'm healthy. They've always been understanding in that a CF life is atypical in nature but that it's important for that life to be as "normal" as possible. Often times it's completely forgotten that I'm "different" and they're always there to hold me accountable if I'm screwing up.

12. inCourage Vest System- Admittedly, I would choose a hand pound over the vest every day of the week. I got pounded by hand for the first 20 years of my life at least twice a day and I think it helped me immensely. But with that said, the vest is certainly better than a sharp stick in the eye and I'm thankful that I have a very light and portable one. I take it with me on every vacation and it's very easy to slap on while I work or browse the Internet. It's definitely an easy way to get in all of my treatments and I know that it's doing my lungs good!

11. Wintergreen Mints- It's probably just me, but I swear I breath better when I'm sucking on a wintergreen mint. I usually will have one in my mouth before doing PFTs as I think it opens me up a little. I of course have no scientific evidence to base this on, but sometimes believing that something good is happening is just as good as something actually happening.

10. Baby Bottle Cleaner- This is a fairy new piece of equipment in my house but so far it has produced wonders. I'm actually new to the whole nebulizer cleaning thing (didn't start consistently cleaning my nebs until March of this year) and I started with a hot pot at first and then moved on to just throwing them in a pot of boiling water. Now, I throw them in a baby bottle cleaner, add water, push a button, wait six minutes, and then presto bango, CLEAN NEBS! It's amazing I tell you and what I time-saver.

9. Protonix- So I used to throw-up every single morning of my life from about 1994 to 2004. This of course can be a major problem because I would eventually just be puking up stomach acid, which is not friendly on the throat, mouth and teeth. I had the same routine going of feeling sick almost immediately upon entering the shower and then about 5 minutes later I would start throwing up mucus that I had swallowed the previous night while asleep. I realize that much of this was probably psychosomatic and had just become a habit that I had fallen into, but when I started taking Protonix regularly the throwing up became less and less common.

8. Insurance- I know that I have some problems regarding insurance right now, but there is no doubt that I have been blessed with great medical care my whole life which has been paid for by my insurance company. I've really never had a struggle with getting stuff paid for, and with the exception of one time, they've never put the heat on my doctors for all of hospital stays (a direct phone call from me nipped that in the bud).

7. My Blog\The Internet- This blog has provided such a great accountability tool for me and a great way to express my views and opinions on CF and life (which happen to a lot of overlap). The Internet has allowed my to connect with people out there that I otherwise never would of as well as keep up with the happenings of the CF community and research at the click of a button. Have a question about Cystic Fibrosis? It's only a click away and you can actually get a straight answer from somebody who is going through the same kind of things.

6. Invacare 50 psi Compressor- Going from the PARI ProNeb to the Invacare Mobilaire has made a world of difference. I've cut my treatment times down by at least 50% and the medicine just makes me feel different when going in. It feels like it is having a larger impact on my lungs and it one of the best investments into my health that I've ever made.

5. My Love of Sports- Everybody who reads this blog knows that I preach being faithful with your treatments and staying active. Fortunately for me, I've always been 100% with staying active because of my love for sports. Whether it was tee-ball, YMCA basketball, high school football, or church league softball, I've always been involved in some type of sport. In fact, my longest career thus far has been coaching football which I did from 1998-2004. It required that I stay active just so I could keep up with my players!

4. Patience- Here's the deal, not everything in life is going to work out the way you want when you want. Throw a chronic disease on top of that and your life can be completely different than you ever imagined. There are ups and there are downs, but I've been given the gift of patience by God to see me through the down times. I realize that there is a plan and although I may not know exactly what that plan is, I know that He does and He'll accomplish His Will through me. I also know that His Will in my life will be 100% perfect and I was the man that he chose to carry it out. Sometimes it just takes a little patience for His Will to unfold, as it's not my timing, but the Lord's.

3. Mandi- There is no doubt that when God created Mandi, He had me in mind. There is no other way to explain that a woman exists that has everything I've ever hoped for and has opened my eyes to other qualities I never knew I needed. She is the biggest reason why I'm so committed to staying healthy. I want to be around for her for as long is absolutely possible. Not only do I want to be around, but I want to be the boyfriend/husband that she's always dreamed of. She is truly my best friend and a gift sent by the grace of God because I truly don't deserve a woman like her.

2. My Mom- When I thought of qualities that I knew I needed in the eventual mother of my children, many of them came from what I saw in my mom. She has absolute unconditional love and I knew that her family was what she cherished most. She has sacrificed more than I can list in order to provide me the best care possible starting in early childhood by selecting a job because of the benefits. She lived without so her kids could live with. She was incredibly soft and nurturing yet showed tough love when I needed it most (which was often). Most importantly though, she raised me to live my life and to never ever use CF as an excuse. That put me on the path in which I still live today, and for that, I'm eternally grateful.

1. My Faith- Truth be told, God has provided everything to me that has made my (CF) life easier. He chose my mom , He created Mandi, He gave me my talents and character, He provides me resources, and He put specific people in my life at specific times. I know that He also allowed CF into my life for a reason and that He also promises not to give His children things that we can't handle. He has already set my plan in motion and has given me the proper tools to navigate through life. I trust His plan is perfect, and thus far I wouldn't change a thing. Most of all, when I can't do it on my own (which is 99.9% of the time) He's there for me. When I need His strength it's available. When I need His grace, He provides it. When I feel uneasy, He gives me peace that passes all understanding. When I have doubt, He gives me clarity of mind. When I have sorrow, He is there to give me comfort. And when I have death, He will bring me home to spend eternity with Him.

Here's how I look at it: God and I signed a lease on my life when I was born, I don't know when the lease expires, but I do know that I'll go WAY OVER on the miles.

Treatment Time

I know there are plenty of CFers (and probably a good handful of CF family members and significant others) that hate treatments, and I get that. 2-4 times a day, you have to stop what you're doing, sit down, stick a neb in your mouth, and strap on your vest. When you're spending the day somewhere, you have to debate whether to skip a treatment or bring your treatments with you (which includes packing and unpacking cords, nebs, machines, meds, etc etc etc). Man, what a nuisance, huh?

I, for a while, was annoyed by Ronnie's treatments. I didn't like that we would have to go home sometimes in the middle of the day because he was feeling junky. And I still, at times, find myself being perturbed by the fact that Ronnie has to do 4 treatments a day, totaling nearly 4 hours a day. 4 hours away from time spent with me, right? WRONG! Not necessarily. Not if you fill the time right.

Ronnie and I have found a lot of fun things to fill treatment time with. We have found TV shows that you don't need sound for, like House Hunters or Property Virgins on HGTV (and actually, most HGTV shows are good sans sound). We plug headphones into a computer, each taking an ear bud, and listen to funny segments of a radio show in town. We sit at the table and play card games, Skipbo is our favorite. Ronnie will catch up on games that were on throughout the day, and I'll let the shaking of the vest "rock" me to sleep on his shoulder. We'll both pull out our laptops and play around on the internet; he'll do his blog, I'll stalk people on Facebook (shameful, I know). We'll catch up on email or get in an extra hour of work. We'll download a hidden object game (hidden-object-games.com, check it out).

Regardless of what it is, we use the time to be productive or to enjoy each other's company. I've realized that instead of it being "time out of the day", it can become a good excuse to spend quality time together. I've actually come to like Ronnie's treatments (just a little bit) and have started referring to it as "treatment time". Next upgrade to treatment time? We've decided we're going to get wireless headphones so we can watch TV shows WITH sound. WOOT WOOT!

What do you do during treatment time? Give us some more ideas :)

You Can't Always Be There

As some of you know, I am having Thanksgiving in Shanghai with my family (my parents live there), so I flew out of Phoenix on Saturday morning. Most of you are quick on your toes and have realized that I am going sans Ronnie, and worse yet, I’m leaving him all alone in the Hole. I must say, I feel a little guilty. I already felt guilty leaving Ronnie back in the states for the holiday of thankfulness. I would love for him to be able to join me, but the last (and only) time he was in China with me, it ended in a 50 day hospital stay. So him coming along really wasn’t in the cards. To add insult to injury, Ronnie came due for a tune-up...and there was NO way I could back out of my family trip. So where does that leave us? With a little guilt and the reality that we can only do so much when it comes to planning our lives around CF-related occurrences.

In an ideal world, we family and loved ones would be able to drop everything when it was tune-up time and spend all day and night with our CFers. I know I’d love nothing more. But unfortunately the reality is not as awesome. We all still have to be at work on Monday morning, have prior commitments, have kids to shuttle around, have chores to do, and in my case, a trip booked for months. This all sounds good on paper, but it is a little harder to grasp when you’re sitting on a 13 hour plane ride feeling guilty that you’ve left your fiance of one week sitting in the hospital without you and you’re missing him TERRIBLY (and it’s only been 24 hours since you’ve seen each other).

The only thing that makes me feel better is knowing his family is in Tucson and knows just what he needs when he’s in the hospital. They bring him dinner every night, come over to watch TV, play games, etc. I have to remember that they took care of him for 29 years, and can easily take care of him for a week while I’m out of town. Knowing there’s someone else to pick up my slack makes me feel so much better when I’m feeling guilty, and wishing I was there with him.

Have you ever wanted to be with your family member or loved one and just couldn’t? What did you do to avoid the guilty feeling? And what do you do to make sure they’re still cared for?? CFers- clue us loved ones in, how does it make you feel?

Who's That Lady? (Who's that lady?)

A lot of you have asked me various questions regarding Mandi, who she is and her role in my life. I've directed many of you to different blogs she has written, but I thought for those of you who have come on board to this blog recently, that I would make it easier for you. Please click on the links to get to know Mandi a little bit better.

Who is Mandi: Allow me to introduce myself...

What is Mandi: Relationships and CF

Where is Mandi: The Night We Met

When is Mandi: The Balance: When to Push and When to Nurture

Why is Mandi: View of CF from a Girlfriend

There are many other blogs that Mandi has written if you haven't gotten your fill yet. Just go to the label cloud and check out Mandi Monday, girlfriend or relationships. If you ever have any questions for Mandi please don't hesitate to contact her through this blog or through her Facebook.

Here's a little look on what we do for fun...

I had my tearful eyes opened

This week I realized something that I hadn’t previously.

This past Monday, as we sat on the couch, Ronnie asked to me read his post for Top Ten Tuesday; his list of things that made his CF life easier, and specifically, his number one. As he was reading it to me, and got to the final sentence, “and when I have death...” his eyes got watery as he finished the sentence. I pretended not to notice as he looked up at me with teary eyes for my review, and just offered up my praise for his entry. He then had me read point number three in which he wrote about his beloved (that’s me). As I read it out loud, I could feel him watching me. And as I read his words, “I want to be around for her for as long is absolutely possible” tears welled up in my eyes, my voice began to crack and a tearfully made it through the remainder of the sentence, swallowed the lump out of my throat and finished the point. Out of the corner of my eye, I could see his eyes glistening more than normal in the computer light, and realized in that moment that he too had tears in his eyes. I set the computer down, looked into his watery eyes as a few tears streamed down both of our faces, and told him it was perfect as I hugged him.

What I realized, as I sat there hugging him in the dark family room, only illuminated by the flickering, muted TV and his words on the computer screen was this: Ronnie is scared to die. I guess it’s silly to think that he wouldn’t be scared, but I think I just assumed that because he had always known it was a possibility and because of his personality/faith that it didn’t phase him. But in that moment I realized that he was scared for those of us he would leave behind. He wasn't afraid to die for him. The thought of death itself was one that didn't phase him. And the thought of going to heaven made him overwhelmingly happy. But he was scared to die for the rest of us, left here on earth. He knew the heartache, devastation and emptiness that it could potentially (and most likely) cause. He has always told me that the only time he gets choked up talking or thinking about CF is when he talks about his family. And it suddenly all made sense. He understands the sacrifices they have made to keep him happy and healthy, gets that they are a big reason he is around today, and I think (in psycho-analyzing him) that he’s scared what will happen, to his loved ones left behind, when he goes.

We did talk about it that night. We just sat there, hugging each other, my eyes tearing and opened to a realization that made my fears seem more rational; valid. It was an interesting moment between the two of us. Maybe because it’s the first time I saw my goofy, carefree best friend cry, or maybe because it’s the first time we shared, together, our fears for me when he was called home. Either way, it’s a moment I will never forget!

Mandi Monday should be renamed Mandi's Meltdowns

So in the act of full disclosure, I'll tell you that I actually wrote this last Tuesday. But I did it with your best interest at heart. I had a bit of a meltdown, unexpectedly (and to Ronnie's misfortune) last Tuesday, and figured I'd write about it right away to capture the raw emotion better...for your reading pleasure.

I had a bit of a meltdown today. Why, you ask? I have no clue. Ronnie and I were sitting having our breakfast and BOOM, meltdown about health insurance. How did it come up and where did my emotions and fear come from? I have no idea. Ronnie and I both can't remember the first words out of my mouth, maybe I blacked out as I hyperventilated through my sobs? Within a short span of time I said we'd never get married if we didn't start working on insurance now, tried to find career options for both Ronnie and myself, said I felt like it was all my responsibility, wished I had a job that gave him benefits, and the list of grievances goes on. Where did that get us? No where - as Ronnie continuously pointed out during the conversation as he lovingly tried to say, "why are you worrying about this right at this moment. Nothing will change at this second by you worrying and getting worked up" to which I would tearfully respond, "one of us has to worry about it or nothing will ever change" (not so logical).

Let me give you a slight background. I have medical benefits with my job, but I'm at a SUPER tiny company, so there's no way my plan can support him on it. Ronnie works for the same non-profit part time, but if he gets benefits through it, the company's premiums go up 10 fold. He's currently still under his mom's insurance, so if we get married, he is no longer considered a "dependent" on his mom, so no insurance. Which leads me to the kicker, we can only tie the knot once I have a job that has good enough benefits for him. It has been discussed that Ronnie work (part of my melt down was that it all depended on me, and I wanted him to try also). We'll explore that option, but it's obviously a little riskier because he needs to make sure he can keep up on his treatments, working out and hospitalizations while working.

So here leads to the bigger issue that I was upset about (I think...it's tough to quite tell). I feel a little embarrassed to actually express this, but I think it may help both CFers and CF significant others, so here it goes. I felt, in that moment, like I was having to sacrifice a lot. I felt like I had to leave a job I love to get him benefits. I felt like I had to work forever to keep those benefits, while I had always dreamed of being a stay-at-home mom (like my mom was). I then thought, "well we may not even be able to have kids" (something I've always wanted). I felt like we couldn't get married when we wanted (we've been ready for awhile now). I felt like we didn't have all the time in the world (I clearly never pictured marrying someone I knew could potentially just not wake up tomorrow). I felt like I was having to give up a lot of what I've always wanted to be with Ronnie because he had CF as all those unenvisioned circumstances piled up in my mind, I got more and more worked up.

But here is what I often think about, when I return to a rational state. There are two main things:

1. I may be giving a lot when it comes to Ronnie's CF life, but I am not giving up anything when it comes to Ronnie. Ronnie is just what I need. I cannot begin to tell you what he does for me. All we talk about on here, is what I do for Ronnie and his CF because that's what this blog is about, but that's only a small portion of our relationship and certainly only 1 side of it. Ronnie is my rock. He provides guidance, confidence, understanding, excitement, support, encouragement, comfort, joy, and countless other things in my life. At the end of a tough day, one conversation with him is all I need to put the day back into perspective and make me forget the stress of anything that may have come my/our way. His sense of humor has a way of cracking me up until I've got tears running down my face and I snort (yes, snort). Also, I'm very much a rollercoaster of excitement, anxiousness, sadness, happiness, goofiness, intensity, animation, etc etc, while Ron is a consistent, steady-eddy. That's just what I need (and certainly what my future family will need). He is very much like my dad. And I can tell you that there is no better father and husband than my dad and I'd be bless to marry a man just like him (not to mention I've learned how to interact with my dad for the last 22 years, so it comes naturally). So while Ronnie's CF presents a different set of circumstances that I maybe never pictured, Ronnie is the man I always wanted and never knew I needed. And he is very much the way he is because of his CF, so I would NEVER take that away. I'd rather have the challenges of CF then the man Ronnie would be without it.

2. I may have always pictured my life one way, but that doesn't mean God planned it that way. I pictured what I've always known. A dad/husband that worked, a mom/wife that stayed home, a few kids that came with ease - as fortunate accidents, a guaranteed long life with my spouse. That is what I envisioned as a perfect, beautiful life. But what isn't beautiful about this?: A stay at home dad/husband (that is FAR more patient, just as loving, and just as good of a role model), a mom/wife that works, a few kids that are miracles, and a blessed marriage that is full of love, happiness and memories. So sometimes I need to push aside my preconceived ideas of what I wanted my life to look like and let God show me what my life is supposed to look like.

I'm not sure if these are natural feelings that come along with a CF relationship. I would imagine that they are. I'd love to hear your thoughts if you've had similar ones, or if you never have, I'd love to hear that too. I think all to often we think it's not "appropriate" to share some of the negative thoughts or fears we have. But they are quite normal and therefore healthy to discuss. I think we're often scared to verbalize things like this with our CFers because we don't want to hurt their feelings or assume that it will be insulting, but if done tactfully, it can really strengthen a relationship. They have had their whole lives to figure out their perception of their life with CF, for most of us, we are new to figuring out ours. However, I will say, my approach, expressing all of this in a moment of fear, anxiousness and sadness, maybe isn't the best. I would guess that you can probably more tactful in your approach if conversations like this are had in rational, calm conversations, but sometimes, it's just not how it happens.

So bigger lesson of the day: Share your feelings, both good and bad, about CF with your CFer. There's nothing wrong with the way you feel about it and by talking about it, it becomes you and your CFer against CF, not you against you CFer, which could happen if you bottle it up.

The Night We Met by Ronnie and Mandi

In this first edition of Sound-off Saturday I decided that Mandi and I would recap the story of the night we first met. Here's the deal though: We each wrote separate stories and had no knowledge of each other's story while writing. So here it is, a "he said, she said" about that fateful night in June when Ronnie met Sally...I mean Mandi.

Ronnie:

I first want to stress that I had met Mandi about 6 months earlier during the Christmas season while she was home on break from school. It was a very basic meet and greet and I didn't come away with much of an impression. We literally said "nice to meet you" to each other and that was it. The only initial thoughts I had was that she was smart and kind of stiff. Not so much stiff should I say, but she just sounded proper and educated, plus she had these librarian glasses on. Other than that, I knew only that she was the little sister of my good friend's roommate. I wasn't in the market for a girlfriend (my girlfriend at the time actually met her at the same time that I did) and I was enjoying myself listening to some of my friends play in their band, so I wasn't being a social butterfly. The next time I saw Mandi again was June 27th, 2008.

At this time I was again a single man, but not back in the market (or so I thought). I had recently ended a relationship so I had decided to lay low for a while and not even make very many "public appearances". See, I meet people very easily. I'm able to hold a conversation with absolutely anybody at anytime and while I understand that I don't have to date somebody just because I speak to them, I wanted to take that option off of the table. Friday night of that week rolled around and I was planning a nice quite evening at my house to catch up on some movies I had yet to watch. I got a call earlier in the day from friends wondering if I wanted to join them for a movie and I politely declined. The night time had now arrived and just as I was getting comfortable on my couch I got a call from my buddy Bryan, "Dude, why don't you just came hang out with us?" he asked. "Because I don't feel like hanging and I've already sat on my couch to watch a movie" I replied. "If you're going to watch a movie anyway, it should be with us" to which I replied "Dangit Bryan, what theater are you guys at.". Usually I don't succumb to peer pressure, but for whatever reason, that night I decided to appease my friends.

Mandi:

I met Ronnie on June 27, 2008. I was home from school for summer break and since I wasn’t from AZ, I tagged along with my brother, Josh, and his friends to a movie. I had been hanging out with them for quite some time, so I knew all of the people going. We were sitting in our seats waiting for the movie to start (I think it was Wanted that we were seeing) when Bryan, one of Josh’s friends, said, “Ronnie’s coming, so we need to save him a seat.” A few minutes later, here comes a guy with khaki shorts, a t-shirt and “the messy hair look” walking up the stairs, stopping at our row. Everyone said their hellos (all knowing each other) and then Bryan said the words that would change my life forever, “Oh yeah, Ronnie, this is Mandi, Josh’s LITTLE sister.” Boom...fireworks, we fell in love and lived happily ever after. Haha I wish! We sat there waiting for the movie to start, Ronnie was telling riddles and having Josh, who’s a genius, solve them in a matter of seconds. Ronnie made several jokes throughout the first 5 minutes and had me cracking up. Point one for Ronnie: He was a funny man. Because he was so funny, I got super nervous to make jokes because funny people have a higher standard when it comes to funny...and I’m afraid I generally don’t make the mark. Suddenly, hunger struck and I went to get some candy. As I crawled over the other members of our group and passed Ronnie, who was on the isle, I asked if anyone needed anything, to which Ronnie replied, “I kinda need to pee, think you could do that for me?” I playfully rolled my eyes and said I’d see what I could do. When I got back I made sure to get a few sexy, intriguing lines in there like, “Want some m&ms” and (handing him the m&ms again) “Help yourself”. I made occasional eye contact with him as he made little comments during the movie, but there unfortunately, that was it.

Ronnie:

I show up for the movie just in time for the previews (which are my favorite part of the experience) and give a quick greet to everyone. I remember re-meeting Mandi and I believe a friend of mine was sitting in between her and I. I should just warn you guys now, if my story sounds completely different than hers, just believe hers is actually the way it happened. I have a TERRIBLE memory. I'll often recap a story to a friend about something awesome he missed to which he will reply, "Yeah, I was there. I was sitting right next to you". Whoops. Or when I asked Mandi about how much fun we used to have playing Boggle together to which she responded, "I've never played that game". Double whoops. Anyways, I'm getting off track. I don't think there was much conversation before the movie started between any of my friends (although now I'm starting to remember playing some kind of game, but that was a different time I think). So the movie Wanted (I think) started and was entertaining as I remember although I can't recommend it to any of you because of the language. After the movie ended we all decided to head to a local (and favorite) Wine Bar called Armitage.

We got there and claimed one of our favorite couches and just started hanging out. I'm pretty sure that Mandi and I started talking almost immediately when we sat down. I'm sure we exchanged some normal stuff but then we got into the heart of what dominated our conversation for the rest of the night- relationships. Since I had recently gotten out of a long-term relationship, the topic quickly started to focus on my ex. As I recall, I did a lot of mental "dumping" on Mandi about what I thought went wrong and what I would do the next time and what I was looking for and yada yada yada. She then analyzed me like an armchair psychologist and soon was telling relatable stories. It was so nice to meet someone who seemed to understand where I was coming from and could sit there and listen as well as dominate a conversation. I've always been used to being dominate in conversations (not that I want to), so this was a welcome relief. I was able to sit back and just listen to her speak (diagnose my situation). Now, she'll tell you the opposite. That I went on and on about my ex and wouldn't shut up. That she never got a word in. What I remember though was me dominating the first 40% of the conversation and then her bringing home the last 60%.

I also remember her completely ignoring some friends of hers that showed up to hang out with her. This told me something about her that night- she actually about what I had to say and was enjoying our conversation, not just putting on a show. I remember her making me feel like I was the only other person in the bar that night. I have to say, it felt really good. What other impressions did I form that night? Instead of thinking of her as stiff, I realized that she was incredibly smart, articulate, and well-spoken, but anything but stiff. She was full of laughs, jokes, stories and just down right entertaining. I was very impressed by her. Even on that first night I remember thinking, "Man, she's like the total package". There was a couple big problems though, I wasn't in the market for a relationship and she was the little sister of a guy in our "crew". I couldn't be that guy. Plus, if we're going to be honest (which Mandi has heard this before), I really didn't think she was my type. She was blonde and she had freckles- two looks that I generally didn't go for. Throw in the fact that she was "related" and lived 3000 miles away and still in college, the last thing that crossed my mind was a relationship.

Mandi:

After the movie we all went to one of our favorite spots, Armitage, to listen to live music. I “happened” to sit next to Ronnie (You will begin to realize, I’m a VERY strategic thinker). I began to ask him questions and soon realized he had JUST gotten out of a relationship. Minus one point for Ronnie: Baggage. I began to poke and prod about him and his ex (had to know why they didn’t work so I could know what NOT to do, right?). He had no bad things to say. One point for Ronnie: Nice guy. Minutes turned into an hours of talking about him, his ex, his life, his CF. What’s that? It was all about him? You betcha...I managed to make him think I wasn’t a big talker...SUCKER. No, I actually enjoyed listening to him talk about himself. He had a way of talking that hooked me. His laugh, his mannerisms, the way his eyes would light up when I would say certain things. I loved it. One point for Ronnie: He was interesting. So I just kept digging. I couldn’t tell you how long we sat there talking. Conversation just came easy with him. There was never a lull. I was hanging on his every word. I remember wishing this night wouldn’t end and that I could learn more about this green-eyed, playful friend of my brother’s. To ensure this wouldn’t be the last I saw of him, I began to plot again. At some point, someone was leaving and mentioned future weekend plans. I quickly threw out an offer to make everyone blueberry pancakes the next morning (genius: where there is food, Ronnie will come). Ronnie agreed to show and Bryan offered up his house. Perfect, this would not be the last I saw of him.

Ronnie:

We ended up hanging out for a bit after everyone else had left back in my truck listening to music. The conversation turned towards our tastes in music at some point and she had not heard of some of what I thought were "classic" songs I was mentioning. We chatted for a while longer as I played some tasty treats for her ears. I can't recall a single conversation that we had in my truck as we listened to music and I think I was half asleep, but I do know that I loved every minute about it. She was just so easy to hang out with. After an hour or so of music we parted ways and she left me with question (which probably put us on the road to success) "If I make pancakes tomorrow morning for you guys at Bryan's house, will you be there?"

I couldn't wait for the next day.

Mandi:

Ronnie and I continued to talk as people trickled out. We eventually decided to leave since it would be an early morning of blueberry bliss. But as we were wrapping up our conversation, music started to be discussed. One point for Ronnie: He loved music. (If you’re keeping score, he’s up in points big time). Ronnie tricked me into listening to the songs he was talking about that I had never heard. Could it be that he too wasn’t ready for the conversation to end? It gave me a little hope (although he’ll tell you he WASN’T interested at all and really just wanted me to hear the songs). We walked to his car, which, to my surprise, was a Ridgeline truck. Why was that surprising? I have no idea...just surprised me. I didn’t know then, but that was the first of many surprises Ronnie had in store for me. We jumped in the FRONT SEAT (for any of you who were trying to predict the story) of his truck and he began to play song after song on his ipod. Before each song he would swear was better than the last, tell a story to set it up, or act amazed that I had never heard it. We sat singing songs, talking, laughing. A few hours past, and we decided that it was actually time to wrap things up, as we would see each other in just a few hours. I gave him a quick hug, told him how awesome it was to meet him and get to talk (I tried to play it cool while still letting him know that I thought he was the coolest thing since snap bracelets), jumped out of his truck, and walked to my car, on air.

I don’t know if I ever told him this, but I had trouble falling asleep that night. I was like a little kid on Christmas eve, anticipating the morning, when I’d get to see him again. And if I had known what I know now about Ronnie, and if I had knew where we would be today, I would have been even more excited.

This is a bench outside of Armitage. Mandi made breakfast and we ate there for our first anniversary. See the post here.

Allow me introduce myself...

You all already know me as Sickboy’s exercise buddy and partner in crime, but since you’ll be stuck reading my posts once a week, why don’t I tell you a little more about myself.

I grew up all over the place. Born in Ohio, I moved every few years (for my dad’s job) from Ohio to Michigan, Michigan to Pennsylvania, PA to Singapore (in Asia), Singapore back to Pennsylvania. Once I graduated high school, I moved to Syracuse, NY to attend Syracuse University. I just graduated from Syracuse (Go Orange) in December with a degree in public relations and minors and marketing and psychology and moved out to AZ, where my parents moved while I was in college and my older brother now lives. My parents still own their house here, but are living for 3-5 years in Shanghai (that’s what brought Ronnie to China over the holidays). I am currently working full time at a small start-up non profit -- but more on that later...

Now that we’ve gotten my standard story out of the way, let me give you a better idea of me. I think you can tell a lot about someone by the things they love...so here’s a short list of things that I love: sunsets, the first sip of coffee in the morning, traveling, sailboats, live music, running, sun dresses, Skipbo, the first few hours after the sunrises, chocolate chip cookies, graphic design, time with family, bonfires, any and all candy (chocolaty and fruity), House Hunters (HGTV), surprises, Dunkin’ Donuts, Christmas morning, romantic comedies, hiking, and orchids.

That’s my brief introduction...to give you a little glimpse into Sickboy’s lady and your Monday author. I’d love for you guys to introduce yourselves to me by giving a short list of things you love...

...I look forward to Monday’s with you. Thanks for taking the time to get to know me and for reading my ramblings :)

Re-entering the Real World

My little wooly mammoth (you’ve seen the videos, you see the beard) is getting out today! When he’s in, I try to be there as much as possible, and when I’m not there, we webcam frequently, but there’s NOTHING like having him home.

By now I’m sure you can tell that I’m pretty energetic and easily excitable. Now add to that my giddiness (yes, giddiness) when I haven’t seen Ronnie in a while, and you have one bouncy, overwhelming monkey anxious to do everything you haven’t done for a few weeks together RIGHT when you walk in the door.

You may be thinking, “Aw, how sweet”...but for Ronnie, who is generally a little out of sorts when he gets out, not so much. I have learned that after being stuck in a tiny, bland room for so long, Ronnie’s body and brain go into system overload when he’s first out. Loud noises, people all around, screeching girlfriends all overwhelm him. So every time he gets out I have to do my best to suppress my prancing, clapping, wiggling, giggling, blabbering, blubbering ways for the first few days.

I’m happy to do my part because I know Ronnie does his. He tries to snap out of hospital mode a little faster than normal and not let himself go into overload (if you know Ronnie, you know he’s one of the most controlled, patient guys in history - one major point on which we differ - maybe he’ll rub off one of these days, but I doubt it), but there’s only so much he can do.

It normally takes the first day for us to get back into our grove and I’m sure the longer we are together, the better we’ll get at balancing the first few days post hospital. As for today, I’ll enjoy snuggling up and enjoying some quiet time with Ronnie home and save all my craziness for tomorrow!

Hospital Stays Are What You Make Them

ENTRY BY MANDI:

It’s hospital time again. I am actually a little excited about Ronnie being in for his tune-up - and no, it’s not because he’s gone for 3 weeks ;-). I never thought I would actually be excited for a hospital stay because I used to hate hospitals. I’ve never be admitted to a hospital, or spent much time in one outside of the quick ER visit (although we all know ER visits are never quick). They always felt cold to me with their white walls and stainless steal. Ronnie had no idea how much I hated hospitals the first time I went to visit him. I drove to Tucson from Phoenix, in a terrible thunderstorm, and when I got there, I was informed that the power was out. Yes, the power was out IN THE HOSPITAL, I didn’t know that could happen. It felt like I was stepping into a horror movie as his brother, Grant, lead me through the dark, deserted halls. It was like one of those scenes in scary movies where you want to yell at the character and say, “What are you doing? You NEVER go into a hospital when the power is out.” But after I spent my first few days with him, I began to feel comfortable, and actually began to enjoy it.

I like our hospital time together for two reasons. First, and this may sound funny to most people reading this, but it’s a special time for us. It’s a rare time where we have nothing to do but enjoy each other’s company (and enjoy it we do; we play games, listen to old John Jay and Rich shows, talk, play catch, watch TV (especially 48 hours, dateline) and the list goes on). I enjoy being there.

Secondly, it helps make CF real to me and helps me understand everything that comes along with it. I’m a worrier. I’ll worry about anything and everything. So for me, it helps if I can see what’s going on. If I weren’t there when he went into ICU, I would have been terrified and worried. If I weren’t there to see him on the BIPAP, I would have thought it was scarier. If I wasn’t there when he coughed up blood, I would have panicked. Being there helps me see that each thing isn’t as scary as my mind makes it. And while it makes all the “hospital things” less scary, it makes CF more real. Ronnie downplays his CF and how much it really affects him. When I’m in the hospital with him, however, I can see and hear things first hand - not his diluted, “it’s no biggy”, version (although I must admit, he sure makes me feel like he can handle anything that gets thrown our way, whether it’s related to CF or not, and I do love that about him). This helps me understand more about how he’s really feeling and just how serious CF can be because it’s easy to forget when I’m with someone that seems “healthy” so much of the time.

All in all, I’m excited for this stay - I want him out and home in two weeks. Lucky for me, I can work from anywhere now, so I’ll be able to be here all week, working during the day and enjoying our time at night.

The Balance: When to Push and When to Nurture

**My fantastical girlfriend Mandi has agreed to do more guests posts after the overwhelming appreciation of her posts in the past**

I get that I don’t get it. I don’t know what it’s like to wake up everyday with lungs that feel tight. I will never know how it feels to exercise with “only a straw to breathe through”. I won’t get sick and tired of feeling sick and tired. I’ll never quite get CF!

But while I’ll never get CF, there are certain things, as a CF loved one, that I can work to understand. One of the most important, in my opinion, is knowing when to push and when to nurture. There’s a delicate balance between pushing someone to do their best and pushing them past their breaking point. At times, we all need to be encouraged to go further than we think we can. There are also times that we feel so crumby we just want to be loved on. For example, there are times while running that Ronnie feels like crap (excuse my bluntness). At times, it is advantageous for me to say, “Come on get going, your body is supposed to hurt like it is”, when he’s so winded and I hear him gasping for air. Now do I know that he is, in fact, supposed to feel like he’s feeling? No, because like I said, I don’t get it. But I have learned, that afterward, he often feels good, so I push. There are other times, like when we were making our way home from China, that he wasn’t supposed to hurt like he was hurting. How did I know that? I’m no doctor, but I certainly can tell when someone’s skin looks flush, they appear to be passing out in flight, and have trouble completing whole sentences without keeping their head from drooping, their eyes from glazing over, and gasping for air with a pained look on their face. Also, I know Ronnie and unless he’s feeling really bad, he doesn’t let on.

Now let me come back to the statement: “there’s a balance”. What is it? I have NO clue. I think it’s different for every CFer. For loved ones of CFers, I encourage you to watch your CFer closely. Study them. Learn what they look like when they’re “just being lazy” vs. when they’re actually suffering. A good way to tell is by trial and error. When you see them slacking, being lazy, not doing treatments, not exercising - push them. Pay attention to see if they end up being able to push through or not. Then reflect and make note what they were like prior to the success or failure and use that as the gage for next time. There is no science to this, unfortunately. For CFers, help us non-CFers out. Tell us how you’re feeling. Communicate with us why you can or can’t push through at certain times. That will help us help you be more successful in your day to day struggles. We don’t get CF; we can’t. But we want to get you, so help us out by explaining to us how we best can help you.