Saturday, April 30, 2011

Transitioning to Middle Adulthood

Guest post by Leah Sands

Erik Erikson, social scientist, defined "middle age" as the period between ages 40-65, although the US census has often linked it to the ages of 35-50. Therefore, I feel that I am now at the point where I'm transitioning from early adulthood into middle adulthood. My thoughts on this have been hovering in my head as I realize what this means.

As a child and teenager, I remember looking at adults with gray hair as inferior to my world. They always exuded some kind of confidence as they went about their business. Most of them had horrible fashion sense in my opinion. And why should they be so happy and carefree? After all, they were "old".

After recently celebrating my entrance into my 30's, I began to contemplate a lot of realities about my life. It basically began when I injured my back a few weeks prior. This caused me some major pain issues and an inability to be very active. It made me question why I was having this type of back problem because "I'm too young" to be having these issues already.

In addition, I've even become much more aware of educational and media commentary on the changes that start to occur after you reach age 30 - as if there's some automatic switch that changes you from young and thriving to old and degenerating.

"Young and thriving" - not always the case with people with CF. I was fortunate enough to have been diagnosed when I was born due to meconium ileius; although, I still had difficulties gaining weight and maintaining it. My childhood days were filled with swingsets, coloring, forts, and sleepovers. My daily routine also included enzymes, antibiotics, vitamins, inhaled medications, and chest therapy, which was usually accompanied by exciting games of 'I Spy'.

But as I got older, I came to realize that all of this extra daily routine stuff was actually really a desperate effort to keep me alive and functioning normally. I began reading books from the library, secretly, about CF - only to come to realize my true fate. The encyclopedia told me I'd be dead by age 18. Several non-fiction books told gruesome truths of the tortures of CF. I'd spend nights in my room recording my cough so I could replay it to myself to see how bad it really sounded to others. My family would casually redirect me or suggest alternate options when discussing my future and a family of my own. All of this collectively made me understand that I would never see myself as an old person. No sense in planning things out that far. Plus, who wants to be old anyways.

But hey, I'm still alive. I'm 30 and still surviving. Not only am I surviving, but I'm thriving....And how do I know this?.....I'm now a whopping 192 pounds! Yep, thriving all right! It is true what they say - your metabolism slows as you age. Not only that, but the pregnancy weight you gain also sticks with you for life. And yes, I've even been pregnant - something I didn't think was ever possible. Now I see my two boys running around our back yard and I can only be grateful for all the wonderful things in my life. Not only have I achieved my personal and family goals, but also my educational and career goals. I finished my graduate degree last year and landed my dream job on my 30th birthday. So thriving is an understatement to say the least - I'm living a dream!

Amongst all of these achievements, that I originally thought were impossible, I have maintained my health. I feel guilty and sad when a friend with CF has a difficult time or passes away. Why isn't this me? So many people aren't able to live their dreams and accomplish their goals, so what makes me so special? Everyone deserves a chance.

So I look in the mirror and evaluate my life. I can almost look into my soul and see all of the feelings I have inside. I can look into my eyes and relive the memories that have made me who I am today. I can look into my hair and realize that I'm starting to get grays --- WHAT?!?!?!?!

I never, in a million years, would have thought I'd see this day. Should I pluck them out? Color them? This brings awareness to the fact that I'm not so young anymore and I want to look young. But the other part of me wants to embrace this change. I want to cherish the fact that I'm old enough to get them. I've made it to a point where so many others have not, a point where I hadn't planned for.

I've made it to being....old.

Leah's Bio: I am a 30-year-old cyster, married to my life partner, and we have two beautiful boys ages 4 and 2. I work as an application analyst for medical practices, have an MBA, and also hold a license as a registered nurse. I love playing organized sports, such as soccer and softball. I love spending time outside with my boys teaching them how to play sports and jumping on the trampoline. I also enjoy photography, scrapbooking, and anything crafty really. I am very fortunate that my health has remained stable over the years and my mutations are double DF508.

Note from Ronnie: I can't thank Leah enough for reaching out to me and contributing this blog. We are such a "large" small community and can really learn a lot from each other's story. It's always great to hear stories of cysters my age who are not only living with CF, but THRIVING with CF. Growing up in my generation, we were always left to wonder just what age we would make it to. Now, because of all of the wonderful advances in CF care, we are seeing the next generation carry less of that burden!

Friday, April 29, 2011

Our Week 13 Ultrasound!!

S/he really put on a show this week. Best part of the video is when s/he scratches his/her knee :)

Thursday, April 28, 2011

Thankful Thursday - Fibros & RTs

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

Mandi was super duper sleepy tonight and I didn't have the heart to wake her up to write her part of this. I'm sure she'll wake up in the morning and whip something out for you guys, so you'll have to check back!

Ronnie's List:

I'm thankful for another great week of workouts so far. We've switched it up quite a bit from walking, to riding, to gym time and it all seems to be going well. I'm really hoping that next week I can test my foot on a light jog. The good news is that my lungs haven't held me back at all from my workouts, just this stupid foot. I guess we'll see if that changes next week. Fingers crossed!

I'm thankful that I'm going to have the opportunity to meet up with my fellow fibro Brian who is currently going across the country on his motorcycle for the CF Riders awareness tour. He started with a simple dream and has been able to set off on this mission with a lot of hard work and determination. I'm really looking forward to finally being able to meet up in person!

I'm thankful that I'm actually enjoying yard work. You have to understand, I grew up doing absolutely no yard work. We didn't have a yard to be worked on and the one time I was in charge of raking the back yard I tore out some phone lines - and that was the end of my yard work duties. Now at our home we have a big ol' yard to take care of and it can be very daunting. Thankfully, I'm starting to get the hang of it and actually look forward to getting out there.

I'm thankful for my opportunity to speak with a respiratory therapy class on Friday. Just about every semester I get invited to speak to a class of aspiring RTs. We all know how important RTs are in our lives when we find ourselves in the Hole and I want to make sure they know that. I'm there to put a face (albeit an ugly one) to this disease that they read about in books and to deliver one key message - if you're not there because you want to see me get better, then find a new job!

So, what are you thankful for today?

Wednesday, April 27, 2011

So When Do We Tell Our Friends About CF?

Here is an email exchange between a reader and myself about the struggle of wondering when to introduce new friends to our Cystic Fibrosis:
i just realized something, ive made so many videos while i was in the hospital, and NONE of them were about! i get so mad that theres no cf awareness in the world and i HAVE cf, and im not even doing anything about it, thats sad.
its just i dont wanna be know as the boy with cf, i wanna be know as casey the funny kid. ya know? so i never really thought about making cf videos or telling ppl ALL about cf. this is my strategy when i meet someone new;
i give them my name, and say a bunch of stuff to make them laugh, then talk to them for a few days after a few weeks were hangin out with other friends...THEN i tell them i have CF. i let them get to know me for me before i let them know i have cf, and ive realized the ppl i tell right away treat me WAY different from the ppl i tell later on.
i have no idea where i was going with this, BUT this is just something i've always went through, and i know from your "CF doesnt define me" blog, you do kinda the same thing.

Don't worry about being Mr. Awareness for CF, we all get comfortable at different rates. Here's the deal though, we're not contagious so people have no reason to fear us. Also, it's important that YOU explain YOUR CF to people and that they don't "google" it to find out what it is. If they do that they'll probably wonder why you're still alive :) People's reaction to CF is generally a reflection with how we feel about CF. If we seem scared, or sad, or make it a big deal, that's exactly what the people we tell will do. When I tell somebody about CF I usually downplay it a bit, but not to the point that they don't think it's a serious illness that need support. I often tell people that it's like I have pneumonia and asthma all of the time. Everybody knows exactly what those two things are so they can automatically kind of understand what I'm talking about. People are scared and react in different ways to the "unknown", just make sure your friends know what it is. If they don't support you in that, then why in the world would you want them as friends? Know what I mean?

Most people in my high school knew I had CF, but I was also the class clown. That's just me. People know us for our personality. CF is not a personality trait unless you make it one. If you act like a victim, or have a bad attitude, or are a secretive person, it is often because of CF that you are that way. Then, CF becomes part of your personality and that's what people know you as. Who would want to be around a person with all of those negative traits? I know I wouldn't. If you don't make CF part of your personality or let it affect you negatively emotionally, people will only know you as (name withheld). Sure people may know that you HAVE CF, but they won't think that you ARE CF. There is a HUGE difference. See, I HAVE CF, but CF doesn't HAVE me.

Here's what I do as far as when to tell somebody I have CF (and I know that I'll see them again). Generally speaking I have a pretty good "in" if me and that person are at the same table for dinner or something. Know what I do? I pull out the enzymes and set them right on the table. 9 out of 10 times I get the question "what are those?". Then I tell them what they are, what they're for, and why I take them. Then I tell them about CF, but here's the key, I tell them about MY CF. I don't recite statistics or the same jargon you can get on any website about CF. They're not interested in being friends with CF, they want to be friends with me. So I go into MY CF experience; how it affects me. I promise that they care more about that then all of the statistics that they'll forget anyway. But I'm very open about my CF and then encourage them to ask any questions if any ones ever come into their mind because as I tell them "I'm an open book".

I haven't noticed a difference in how people treat me as to whether I tell them right away or not. But I cough a lot so it usually comes up pretty close after meeting someone. Plus, I figure the more people that know about it, the easier time the generations after me will have with explaining CF. Everything to do with CF, from acceptance, research dollars, a cure, education, and involvement stems from awareness. The more aware people are of this disease, the better of a chance we have.

I hope all of that makes sense. Don't hesitate to email me again.
Do Life,


**Originally "aired" on July 16th, 2009**

Tuesday, April 26, 2011

PFT Results and Update from Clinic

So yesterday I headed down to clinic for the first time since getting out of the Hole. It's always nice to see where you stand after six or so weeks out from a tuneup and I was definitely excited to see how it would go. Now me and CF Clinic have quite a history together...and by history I mean a dysfunctional relationship. To say that I haven't been the best at going to clinic would be a gross understatement. The problem is that I've always had very consistent hospital stays and never really saw the need to check in with my doctors unless I wasn't feeling too hot. And lately I've been doing so many clinical trials that I could tell you almost week to week what my lung function is. Honestly, the biggest reason that I want to go to clinic is to see what my FEV1 is. But after much strong-arming and guilt tripping by my CF team I decided that I would bite the bullet and see them in clinic. I'm very glad that I made that decision.

We did all the regular stuff that I'm sure most of you do each and every clinic visit. My visit started off with the social worker and we just discussed some different themes I see happening in the CF community right now and what we'd like to see in the future. Fortunately, I'm not having any insurance issues or family issues at this time (although with Mandi in the house that could change at the drop of a hat...kidding babe). This was followed by a visit from the dietitian and an intern and Glenda, who is like the CF czar. Glenda makes sure that I'm always on top of my game and was one of the main reasons that I made sure I got to the clinic. She can guilt trip with the best of them :) We went over the basic stuff like how my lungs were doing if I had an increase in cough, how my appetite was and overall how I was feeling. We of course had to go over my medicine list, and you would think at some point I would write it down or have it on my phone, because I seem to always struggle to come up with all of my meds. I'm sure each clinic is a little different from place to place but I'm also sure we have common themes that are similar. But this is basically how clinic goes each and every time.

I almost forgot about the most exciting part! My appointment actually started off with a visit from Darcy who does our PFT testing. Now I felt pretty good heading into the appointment but knowing that my last FEV1 was at 61% and that I haven't been able to run for a few weeks because of my foot, I really wasn't sure what to expect. To my delight and surprise I blew in a FEV1 of 73%! According to them that was one of my best in clinic FEV1 in years. I also blew an 85% FVC which you have to go back to 2003 to match. I got to say it felt really good to see that number increased so much and just validates all of the commitment and hard work I've put in since I've gotten out of the Hole. It's been very rare for us to miss a day in the gym and if we do miss, we make sure to get a walk or a bike ride in. We've also been eating much better and although that may have no effect on the lungs, I can definitely tell and how it affects me overall.

Now the key is to not get comfortable. I can be some fat cat who thinks he has it made just because I have a really good PFT or I can use this as even more motivation. If anything what this shows me is that if I work even harder I may be able to raise those numbers up even more. I haven't been perfect since I got out of the hospital, but I strive to be perfect in taking care of myself each and every day. After the test today I thought to myself what would've happened if I was 100% compliant on both treatments and exercise this entire time? Of course I'll never know the answer, but moving forward I have another chance on trying to achieve perfection. Getting comfortable has always been one of my big battles especially during these times that I feel great. I have to remember that CF never takes a day off and I can't afford to either.

Monday, April 25, 2011

Easter Fun 2011 (Pictures included)

Yesterday we headed down to Tucson to hang out with the family for Easter. Before heading down we would usually go to the Easter service at our church, but the pastor asked for some of the "regular attenders" to go to one of the Saturday services instead. We knocked out the Easter service on 3pm Saturday afternoon. This gave us time to relax Sunday morning and enjoy a nice sit down breakfast together before heading down to Tucson.

As many of you know, when my family get together to celebrate any occasion it's usually a big deal. By big deal I mean that there are a ton of people around. I'm guessing for Easter 2011 we had about 30 peeps there. We do the normal stuff, chit-chat, devotional, chow down, hunt for eggs, dessert and then chat some more. As always, it was a good time and we definitely enjoyed ourselves.

We tried to take as many pictures as we could, but as usual, we suck at taking pictures. Here's what we got though.

Like I said, when we get together, we get together. This was the crowd to my right and doesn't include at least 10 family members who were to my left. It looks like the bulk of family members in this picture are cousins, but I do see some aunts and uncles sprinkled in there. Notice the fresh flower centerpieces in the middle of the table - good work Aunt Janna!!

here's my mom and my aunt Mary hiding some eggs before a handful of younger cousins come looking for them. If you're wondering, yes, I did have a putting competition earlier in the day, and yes, I eeked out a victory over my step-dad Mark.

Somehow I didn't manage to get a picture of the Easter egg hunters, but I did snap a picture of the crowd watching them search for eggs. This year, the oldest searcher was about 5, so we couldn't make the eggs too hard to find. Hiding eggs for kids no taller than 4 feet is quite a challenge and really limits your options.

Dessert table. Three families, including Mandi and I, were in charge of bringing desserts. Mandi and I brought the blonde brownies in the far left hand corner of the table and the trifle looking thing on the right side of the table. Our trifle consisted of chocolate cake, cool whip, crushed peanut butter cups, crushed butterfinger, chocolate pudding, another chocolate cake and topped with more crushed butterfinger and some cool whip. Yummy yummy for my tummy tummy...followed by a slight sick feeling :)

Then of course I tried to play with the "big boys" and I got hurt. A ball unexpectedly made it too my hands and I wasn't quite ready for it - can you guess which pinkie got the raw end of the deal?

Sunday, April 24, 2011

Happy Easter Everyone

I hope all of you who actually read this are getting ready to hang out with friends and family. That's exactly what I'll be doing today myself. Mandi and I slaved in the kitchen yesterday making two different desserts to bring to my aunt's house. Luckily, there are two others bringing desserts as well because we should have over 20 peeps around. Anyway, that is it, hope nobody reads this cause you're busy celebrating.

He is risen; He is risen indeed!!