Finally LIVING with CF: Is This a House or a Pharmacy?

As many of you know, Ronnie and I just started living together. You hear stories all the time from married couples about the adjustment period when you first get married. I must say, we haven't had any real issues thus far (let's hear it for the honeymoon period...woot woot), but there was one thing that did make me snap (in a minor, fleeting sort of way). Having just moved in, our house is still in a state of organized chaos. For the most part, things are where they should be, but there are occasions where we'll find a random article that is misplaced. Sometimes it's that it was thrown into a box with unassociated stuff, so it got unloaded in a room it shouldn't have been. Other times, we will have set something down and totally forgotten about it.

Well, as I was going around trying to clean up and organize a few weeks back, I kept finding Ronnie's medicine and/or treatment paraphernalia. We're talking, empty vials from his albuterol, atrovent, and pulmozyme on the floor (in Ronnie's defense, just missed "shots" into the trash can); neb cups and tubing under my sink and in my shoe organizer; Albuterol and Atrovent packets on the desk; inhalers on shelves; more neb cups and tubing in the closet. After picking up empty vials on my hands and knees and finding several clusters of meds all over the house, I snapped (and again, I use this term loosely, I really didn't get THAT bent out of shape). I told Ronnie that I love his CF, but hate living in a pharmacy. I (probably not so) kindly asked him if he could please make sure all his meds, nebs, and the like made it to the medicine stash in the kitchen.

Needless to say, I still have some adjusting to do when it comes to the CF life. I'm totally fine with the fact that there are tons of medical supplies and medicines in the house, I just don't want them strewn all over every room.

Do you guys ever feel like your house has become one big pharmacy?

**Side Note: We were in the settling in process. Ronnie would have picked up the misplaced items at some point in the near future, so me copping a 'tude was probably not needed.

I Know My Enemy...

I have so many things to be thankful for, but here are a few that are on my mind:

- I'm so thankful that I know my enemy. I know what I'm up against and better yet, I know what I can do to help me in my fight. There are so many diseases that strike suddenly and harshly with out any warning. I've been blessed to know my enemy since I was six months old and have been given a battle plan from day one. I know no different than to be in a fight every day of my life. I'm battle tested. Nothing that my enemy does surprises me and so far I've been able to fight back with everything I have. Over the last couple of years, I've been given more weapons then ever before and it's up to me to use them. For the first time in my life, I can actually see this war being won- and not by Cystic Fibrosis, by me.

- I'm so thankful for Twitter. That sounds funny when I actually type it out, but seriously, it's been such a blessing. I have met so many wonderful CFers and CF families that I can't even begin to keep a count. It's a great way to keep up on CF news, CF events and what's going on in the CF world in general. Setting up an account is very easy and you can be active on the site as little or as much as you want. If you need help setting up an account or have more questions, please, contact me. If you're on Twitter, you can find me at @RunSickboyRun. I'll give you some other great Cystic Fibrosis related tweeple to follow if you want to contact me through Twitter.

- I'm so thankful for people that have no affinity with Cystic Fibrosis that still pour their heart and soul into raising awareness and money for the CFF. I seem to be running into these people more and more and I am humbled and thankful every time that I do. Who knows who will be next to hop aboard the CF awareness train? Could that person be the next to raise millions of dollars? We never know, which is why I treat everybody I talk to about CF like they're the key to curing Cystic Fibrosis. Like I've said before, we may be just one person away from making a HUGE difference. Maybe you're the CFer or family who will bring in the next person who changes the game?

It all starts with sharing your story.

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 Daily Battles of Cystic Fibrosis

Hey guys, thanks for your continued support! I wanted to encourage you to try and watch the videos all the way through. I know I can become long winded and I'll try to make them shorter, but it's tough to squeeze in everything I want to say. I'll work on it though! But again, thanks for watching the videos at all, I just don't want you guys to miss anything! Take a look around the blog and check out all of the new features. I'm trying to make it easier for you guys to spread the word about CF and get it in front of people. I have also added some features along the left hand side of the blog including popular posts, recent comments, and my PFT history. I hope you guys enjoy all of the new stuff and as always, thank you for your interaction, thoughts and prayers.