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!

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 :)

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?

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 cf...wow! 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.

Response:

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,

Ronnie

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

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.

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?

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!!

Fun-Filled Saturday

I've been charged with writing a blog today, and by charged I mean I told Ronnie I'd write one to give him a "day off", then totally forgot that I told him that, and then remembered again at about 10PM last night. So here I am - getting ready to throw up some thoughts on a page. I sat staring blankly for around 5 minutes. Deciding I needed to put an end to procrastinating, I began looking through pictures, hoping that would get my juices flowing and I'd magically have something awesome to say. Unfortunately for you, no juices are flowing and so I have nothing awesome to say.

So my go to when I'm blanking? Random update blogs. Who's ready for a random update blog giving a little look into our lives, totally unrelated to CF and totally unrelated to baby (I'll try at least)?

First things first, I'm really excited for today. This week we decided to participate in Bountiful Baskets, a co-op type deal for food. "Huh?" you're thinking. Yeah, that didn't make much sense, I'm certain that is not their catch phase: "Bountiful Baskets: your co-op for food." I'll do my best to explain what it is, but I have a feeling visiting their website will be much easier. You sign up and pay $15 on a Monday or Tuesday online, then Saturday morning (between 6AM and 6:20AM, I'm not joking) you go pick up a huge laundry basket of fruits and veggies, all grown in state or in neighboring states. Apparently it's a great way to get a lot of fruits and veggies at a great price. The downside is that you don't get to pick exactly what you want, the upside is you're forced to eat tons of fruits and veggies before it all goes bad! I'm really excited to see what we get in our basket today, and see how the whole process goes. We'll take pictures to show you our haul!

I'm also excited for today for a different reason. And that reason is RUNNING. I haven't been able to run since we started my stim meds back at the very beginning of February. But at our last ultrasound (dangit, I said ultrasound, does that count as baby talk?) my ovaries were checked out and the nurse said she didn't see any more cysts. I didn't specifically ask if that meant I could run, but considering that was the reason I was told not to, I decided that was the clearance I needed to start pounding the pavement again. It's been awhile, so I'll have to work back into it with a nice and easy run/walk for the first few days, but regardless, I'm thrilled. My goal is to get back to a point where I'm able to run around 3 miles, 3-4 times a week. We'll see what my body has in mind though.

Today is also a good day (man, this blog is turning into the theme "today rocks my socks"...I'll go with it) because we get to bake. Ronnie and I LOVE making desserts. My guess is it's eating them rather than actually the act of making them, but what's the difference, right? Anyways, for our Easter family get together, Ronnie and I are in charge of bringing the desserts, so we'll be making two different desserts today to bring with us to our Aunt Janna's easter shin dig on Sunday. I haven't finished pinpointing the recipes yet, but we'll post pictures of the process once we find the recipes and make the goods. My guess? One chocolatey, one fruity - can't go wrong with a little bit from both ends of the spectrum, right?

Annnnd that's about it. I hope you all have a fabulous Saturday as well. Leave us a comment and let us know what fun things you have going on today!

Week 12 Ultrasound

We had our 12 week ultrasound yesterday and just like every ultrasound before, it's a bit tense until you see the little heart beating. Fortunately this time we saw the heartbeat right away and even got to check out our baby's brain, spine, kidneys, etc. It still amazes me that a little human no different than me, just a bit smaller, is growing inside of my wife. Enjoy the video - it's truly amazing.

Thankful Thursday - Energy & Motivation

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:

I'm thankful that we get to see peanut today. We are at week 12, so peanut should really be looking like a human these days and I'm really hopeful that he'll be moving all over the place. Plus, Ronnie wasn't as the last ultrasound, so I'm thankful that he'll be there and that he'll get to see our little peanut first hand, instead of through a video I made for him! I am so thankful that there's the technology to see my little baby while still in my belly.

I'm thankful that I have the energy to get up and walk every morning and to get a workout in in the afternoon. There are several days when the afternoon workout is dreadful, but I'm very thankful that I've had the energy and motivation to get to the gym. I find that working out helps me feel better about the climbing numbers on the scale.

I'm thankful that we got to spend time with Josh and Chrissy Tuesday night. We haven't had the chance to get together for the last few weeks since we've been traveling and they've been traveling, but Tuesday evening we went to their house for burgers and hot dogs and got to bond over some quality Wii sports competition. I always love time with them and am so blessed to have such a wonderful brother and sister-in-law!

I'm thankful for my husband's ability to make me feel loved, wanted, appreciated, and sexy. I'll be honest - gaining weight, getting a belly with no "baby belly", acne, bring super bloated etc etc have a way of making a girl feel a bit insecure. But my honey has been working overtime to compliment, encourage, and build me up. I am so blessed to have him!!! I'm just so thankful to have him in my life, and I'm so thankful that peanut will have such an incredible man as his/her daddy!

Ronnie's List:

I'm so thankful that Mandi and I have stayed motivated to workout. We've both had energy towards the end of the day to make it to the gym about 99% of the time that we're in town. Like I mentioned in yesterday's blog, it's certainly easier to stay motivated when you have a fine woman willing to work out next to you...and it's cool that Mandi is there too! (Like that one babe?)

I'm very thankful that my foot seems to be getting better. I was able to go on quite a few long walks while I was out of town, but I still am not to the point to where I'm ready to run. I really hope this progress continues because I get more and more jealous of the people on the treadmill every day that I see them.

I'm thankful that we get to celebrate Easter this weekend with the family. Mandi and I love hanging with any family that we can get and this weekend it happens to be the Tucson Crew. One of the things we're most excited about is being able to bring desert. We always try to come up with something creative and are still looking for some kick booty recipes. You guys have any suggestions?

So, what are you thankful for today?

Who's (what's) Your Motivation??

I was going to name this post "Mandi the Motivator", but I thought it'd be more important for the 2 or 3 of you who are reading this right now to start thinking about yourself from the very get-go. When it comes to this CF life and going through the daily grind that we do, it's so important that we stay motivated. For the past 31 years my motivations have changed from being the best athlete I could be, to being a good big brother, to being the best husband I can be; the important thing is however, that for the most part, I've always had an external motivation. You'll hear a lot of people out there say, "you have to want to do it for yourself before you can want to do it for others". My honest opinion: HOGWASH. Not to offend my friends out there who believe that, but I just couldn't disagree more. When it comes down to it, it really doesn't matter who or what your motivation is as long as you're motivated. I think that any family member would agree that they would take their loved one being motivated by an external source over no motivation at all. It certainly helps to have a love for life and for yourself, but for the purposes of this conversation, it's not necessary.

[Now, let me tell you where a lot of them are coming from (which I do understand): Let's say that your girlfriend is you're one and only motivation and then you guys break-up. Now what? Is all of your motivation gone? Possibly. But if that time were to come, you better pull yourself up by the bootstraps and find another reason to kick butt (and it just may be yourself). Either that, or choose your motivations more wisely :) ]

I've written in blogs before that my wife and family are my motivation. That doesn't mean that a small part of me isn't committed to taking care of myself for me, but I can assure you that it is a very small part. For me, it's always been that way. Yeah I love my life. Yeah I love living. But I love the people in my life even more and they are the sole reason that I work as hard as I possibly can. When I look back on the best times of my life, they never involve me alone. They ALWAYS involve my friends and family. When it comes down to it, my only motivation is to be healthy enough to create more of those memories with the ones that I love.

Oh yeah, I have another motivation that will be here in 28 weeks...

MRSA and Cystic Fibrosis continued...

Last week I posted an exchange between myself and a fellow community member regarding her child and MRSA (which can be found here). Many of you were very interested in the post and requested that I share stuff like that more often. The community member and I continued our conversation a bit so I thought I'd share with you the rest of what we discussed. Hopefully you find it useful and/or interesting.

About the MRSA. I am still confused. The nurses, RT, pharmacist and Dr all told us that lots of people carry the bacteria and dont even realize it. If it wasnt that our son had CF we wouldnt know he had it either. If it were any of our others kids if somehow we found out they tested positive for it they would probably treat them w/ antibiotics but if they continued to test + they wouldnt treat any further and wouldnt worry about it unless it caused problems. He said it wouldnt be anything I would have to disclose to the school district when he started either. (if the antibiotics fail and he remains + that is) One of the nurses said they havent seen an effect CF wise in patients who carry it. But they would like him not to have it so he had more options when it comes to antibiotics seeing MRSA is resistant to the penicillin family. They also said there are different strains of MRSA, there is hospital acquired which seems to be more difficult to eradicate and community acquired which has a better chance. I asked about the bleach baths again and he said we do have staph on our skin. Although MRSA likes the nasal and sinuses more, it is present on the skin also. By taking the bleach baths it just helps reduce the amount of bacteria present and helps the drugs do their job.

So, in one breath they make me feel like "no worries, lots of us have it...we're exposed to it all the time. Less than 1% of people actually show symptoms and have the boils/lesions. He'll be fine." Then the next breath though they are all dressed in gowns wearing gloves talking about how he'll have to be on isolation from now on until/if his cultures are negative for 3 consecutive months.

The Dr himself said he understands our confusion and that he agrees the medical field is kind of hypocritical when it comes to treating. One breath, no big deal, the next VERY big deal.

I asked about the rest of us getting tested. He said he thought it would be a waste of time, as they probably wouldnt treat us anyway. He also said that very recently they've started testing everyone who is admitted to the hospital especially for surgery for MRSA. If they test + then they treat them w/ antibiotics prior to surgery but then that's it. They do no follow up w/ that patient regarding the MRSA.

I was kind of peeved though for the fact I found out yesterday that at his Feb 8 clinic he did test + for staph. Not MRSA but a staph and not only did they not let me know that but they didnt do anything about it either. I asked him why not? and he said they dont treat for a staph unless he was sick which he wasnt. Dont get that though...isnt any/all staph not good? Whatever, cant do anything about that now either.

So, he is on Clindamycin and Rifampin (which is a dark red color) The Clindamycin is the yucky one...3xs/day for 10 days. Not going well. I went to Walgreens today and had them flavor it thinking maybe that would help but nope. Put a little in pure grape juice (they flavored w/grape) but nope. So I have to pin him down and try my best to get him to swallow it. The Rifampin doesnt smell like it would taste bad but he wont take that one either. AND that one stains like mad! I feel bad, he gets so totally pissed at me he doesnt even want me to hold him when he gets done. He runs to his big sister and makes her hold him:( He also has some ointment that we have to put in his nose 2x/s day for 7 days. Once he's done w/ these two antibiotics he'll get another refill on the Rifampin and then start Bactrim. He'll be on something for a total of 28 days.

As far as other people that carry MRSA - it is estimated that about, depending on who you believe, 30 to 70% of nurses in a hospital setting carry MRSA in their nose or on their skin. I think the best way to really grasp how it is different is to think of all these bacterias as completely different for a CFer. Like the docs said, MRSA hasn't been shown to do a lot of damage so far, so a lot of clinics treat it, or don't, like your docs do. The biggest difference is for the CF community it can get into our lungs because we don't have the ability to naturally clear our mucus as the rest of the population does. As I said before that's the key difference when it comes to all of these bacterias. So although many healthcare workers will have MRSA it never makes its way to their lungs because they can “naturally” fight it off. Like your medical team is saying it's not something that you have to disclose to the school district because it's not something that can spread to the general population from your son.

The “he'll be fine” attitude is very common in the CF community towards MRSA. It is true that more likely than not MRSA will not have a major impact on his health anytime soon (as far as studies have shown and what the American healthcare community believes). They were wearing gloves and gowns because it is of course better not to spread MRSA to other patients if they can avoid it. Even though it may only be a 1% chance to develop into skin lesions, they certainly don't want to take that chance with passing it on to others.

Confusion is expected. Remember that medicine is comprised of educated guesses. It's often the doctors that make the most correct educated guesses that are considered the best doctors :)

I agree that getting the rest of the family tested would in fact be a waste of time. If you wanted to take it upon yourself to do some bleach baths and some nasal washes it certainly wouldn't hurt, but it also wouldn't necessarily take the chances down to 0% that you would carry MRSA. Also keep in mind that your son may very well of not have gotten MRSA from your family and picked it up in clinic or out in the community, which is probably more likely.

Each clinic has a different response to staph. Some will treat aggressively right away and some will do what your clinic did - not treat unless symptoms are present. I would venture to guess that most CF clinics take the stance that your clinic does and that is not to bombard the body with antibiotics unless it's absolutely necessary. Not saying that I agree, just saying how it is.

I know it's tough for a little guy to understand but there will be a light at the end of the tunnel if he sticks with it. It can be so frustrating taking all of those meds but you just have to do the best you can with making them understand that as it is in fact all worth it (may be impossible with a 1 year old). I know you yourself can get frustrated, angry, disappointed and sad but make sure you always show him strength and commitment because that's exactly what he needs modeled from his parents.

Itty-Bitty Belly

It's been awhile since we've given you a pregnancy update. You've had several baby updates, but I figured I'd posted the promised belly shots and fill you in on me the lady carrying the beautiful little peanut.

I still am feeling pretty good. I am definitely less sleepy than I was in the first 8-10 weeks or so. However, I have experienced a tiny bit of nausea for the last 2 weeks. Nothing major and certainly nothing that can't be handled by eating something. I find that I most frequently get a little queasy when I'm hungry, but occasionally I'll get a bit of an upset stomach after I've just eaten. I haven't been nauseous enough vomit or even come close. So I would say I've been very fortunate and haven't really experience the type of morning sickness that many suffer from.

And while all these hormones haven't caused terrible morning sickness, they have wreaked havoc on my skin. My face is more broken out than it ever has been in my life. It drives me totally nutso, to be totally honest. Not only does it look horrific, but it actually itches most of the day. But as I say to Ronnie, I don't have much of a choice, so I just have to own it. I have just been washing it twice a day and have let it hang out for the world to see (aka don't wear makeup for fear of making it worse). I'm hopeful that I'll get a visit from the "pregnancy glow" fairy sometime at the beginning of my second trimester, but I am bracing myself to look like a hormonal teenager for another 6 months (gulp).

As you'll see from the belly shots, my belly is still pretty small. Definitely small and unnoticeable to someone I've never met. But believe me, it is bigger than it was pre-pregnancy (my jeans show it all too well by my inability to button them)! My belly is about the size it was when I was bloated. So I bloated, deflated, and now I think any belly is from peanut.

As for my weight, I promised to post it - a decision I may eventually regret. I may ask you to never speak of these numbers again and to keep them just between us ;-) I am a 1 day shy of 12 weeks and am up 5 lbs (give or take a pound depending on the day). This puts me a little above some of the recommended 1-3 you read on some sites, but I'm not too worried since some say 3-5 during the first trimester...I just need to hold steady for another 2 weeks! I am hoping the ever growing numbers on the scale get easier to digest once there's a legit baby bump to blame.

That's about it. Check out the belly shots below!

8 weeks

Weight Gain: 4 lbs

9 Weeks

Weight Gain: 4 lbs

10 weeks

Weight Gain: 5 lbs

11 weeks

Weight Gain: 5 lbs

11 Week Ultrasound

Just recently we went in for our 11 week ultrasound. I don't think Peanut was too happy that we were disturbing him/her and it took some "encouragement" to get him/her moving! Make sure you watch around the 6 min mark to really see some action in the womb :)

Thankful Thursday - Birthdays & Movement

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 "linky tools" 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:

I'm thankful for time with family. After our trip to the CF Family Education day in Syracuse, NY, we were able to tack on a quick trip to Connecticut for my Great Aunt's 90th birthday. I was able to spend time with my parents (they flew in from China), Grandpa, Great Aunt, and a slew of family I haven't seen in 14 years - literally. It was so great to spend time with family and I was thrilled that my parents were there.

I'm thankful that yesterday's ultrasound went well. I'm 11 weeks and 2 days pregnant today, and I'm almost through the 1st trimester. I get so nervous before each ultrasound; scared I won't see a heartbeat. But I am so thankful that peanut's heart was beating, s/he was moving all over the place, and all is looking great. I feel so blessed to have gotten pregnant our first IVF cycle, but I feel even more blessed that God has continued the pregnant and kept peanut growing and healthy. I am so thankful for this little being growing in my belly.

I'm thankful for yogurt and frozen blueberries. I used to eat this combo all the time, and I haven't had it in awhile. Well yesterday I had the combo again, and oh my goodness did it taste yummy!! I am definitely having that combo daily. I am so thankful for yummy snacks/food. We are so blessed that we never have to stress about where our next meal is coming from (I can't imagine being pregnant in those circumstances). We are so fortunate to not only have food available to us, but to have yummy food that we eat just being we like the taste.

Ronnie's List:

I'm so thankful for peanut's progress. We just had another ultrasound yesterday and everything looks great. S/he got a little ornery and started kicking Mandi's uterus like crazy and as we say around here, any movement is good movement. We'll post the ultrasound video soon, but if you'd like a sneak peak, check out our Youtube account.

I'm very thankful that I got to spend some time with Mandi's family this past weekend. I was able to be part of her great aunt's 90th birthday party which was truly incredible. Some of her extended family were there also, so it was a joy meeting a bunch of aunts, uncles, cousins, 2nd cousins and so on. The birthday party was in Connecticut so I'm also thankful for the great weather in Phoenix.

I'm thankful that I got to meet some fellow CF community members in Syracuse last week. It's one thing to email and chat online, but it's a whole other thing to actually meet face-to-face. What else was cool was the fact that two of our community members introduced me before I spoke and what they had to say brought me to tears (I didn't actually cry, but I got choked up). They're the exact reason I get out of bed everyday and try to move the ball forward.

So, what are you thankful for today?

MRSA and Cystic Fibrosis

Here's another question from a reader that I thought most of you would find interesting. MRSA and other types of bugs are always a hot topic in our community so I figured it would be helpful to share this exchange. Remember when reading this that I am not a doctor (far from it) and I'm only sharing what has been told to me and what I've experienced.

I know from your blogs that you have MRSA. A dr just called and told me my son's last culture came back positive for it. :( What the hell does this mean for him? He was sick w/ a viral thing about a month ago and aftert a couple of weeks he was put on Sulfa and it seemed to work for a little bit but then his drainage turned back to green so our family dr (his cf dr was out that day) put him on Zithromax. That seemed to do the trick. Well, apparently, the fact that he didnt respond to the Sulfa made the cf doc suspicious and asked that we do a culture last Friday even tho we have a clinic tomorrow. He said we will treat him aggressively w/ antibiotics and hope that we can get rid of it? I thought once you have it you always have it? I am so confused...he also mentioned doing bleach baths?? WTH?? I thought it was transmitted thru blood but he said no mostly mucus, like snot? What do you think/know about this?? I dont even want to tell our family he tested positive (but I guess I have to to protect their kids from it?) b/c I dont want my son to be treated like he has the plague. Crap.

I'll try to answer your questions best I can and in order :)

We're not sure what it means. Some doctors will say that MRSA has no known long term effects on lung function while some believe that it can present a problem.

Treating aggressively is a good thing. Obviously not having it is better than having it.

The longer you have MRSA the less likely it is to go away. Treating early and often is key. You can get rid of it.

Never heard of bleach baths. When you find out what that is, let me know.

You may be thinking of MRSA/Staph found on the skin as far as the blood goes. This is different. It's actually found in many people's nostrils but because they have a normal mucociliary clearance system, it never gets to the lungs. It can be transmitted to other CFers via sneeze, cough, mucus, boogers etc.

You don't have to worry AT ALL about others in the family. I've talked at length with my doctors about this and the chance to "pass this on" at any level (to non-CFers) is very very little. I've asked about old people, babies, etc and they said not to worry. In theory, anything is possible. but getting others sick with our MRSA is very improbable. Think about it, Mandi would be sick! She's fine :)

Don't freak out mama. Encourage them to be aggressive and then hold on for the ride :)

I guess I better make my list of questions for his clinic tomorrow. Dr said that the bleach baths have be proven to help rid of the MRSA. I asked "why, is the bacteria on the skin?" and he said yes, it can be. Now, you say that is a different kind of MRSA? There are two kinds? He did mention it being a type of a staph. So maybe he doesnt have the same MRSA as you have? I know he didnt have it at his last clinic which was Feb 8, that culture came back negative for everything tested.

Weird thing to me is that he is fine right now, no symptoms of any sort. And his CF doc told me today that the zithromax wouldnt have gotten rid of the MRSA (obviously, seeing his tested positive after taking it) but my point being if he didnt have CF or it was one of my other kids, if they no longer had cold symptoms or any other symptoms I wouldnt think to have them be tested for anything else. And guessing neither would the dr. He mentioned that some carry the bacteria and are not symptomatic. Maybe he got it from one of us? I guess we'll all be getting tested for this:(

Oh Ronnie, do you cringe when you see you have mail from me??!! I am a treat aren't I?

There is stuff that they had me wash with when I first had MRSA, but I think it was only a nasal wash.

Generally speaking, if you hear about it on the skin, it's staph, not MRSA. We both have it in our lungs and it's the same bug. And it gets confusing, but MRSA is staph, but a staph that is resistant to the drug they usually use to treat staph. CFers can get both staph and MRSA in the lungs.

I don't feel any different since getting MRSA (2003) and my lung function hasn't declined because of it. I don't have increased exacerbations either. My doctors have never given my MRSA a second thought and don't seem to think it's a big deal.

You don't have to worry about having your family tested.

Keep the questions coming, that's why I'm here :)

But what if we carry it and we're the ones who gave it to him? Or would he have had to have gotten it from another CFer? Who knows, I suppose. I'll have to have the Dr clarify all this for me tomorrow. My son started on both the antibiotics they prescribed for him tonight already. Poor guy, one of them smells and probably tastes too, like cat urine. Dr warned me about that one. Real fun part is he has to have that one 3x's/day for 10 days. The other one, the yummy one, only 1x/day for 10 days. Nice.

So the MRSA you have doesnt cause the skin boils or anything? It's just a bacteria in your nose/snot? How did you find out you had it?

You can certainly try and take steps to prevent yourself from "passing it on" to your son, but I have a feeling that the doc will say that there isn't much you can do. It would be really hard to track down how the MRSA got to him and you'd probably drive yourself silly thinking of it. It's there now and all you can do is try to eradicate it the best that you can.

I've had the cat urine drug...wait until he starts marking the corner of your living room...just kidding.

MRSA will not cause skin boils. You have to think of our lungs and our skin as two different ecosystems if you will. MRSA in the lungs is a completely different ball game than MRSA/Staph on an open wound in your skin. I've asked the doctors before if I could cough on an open wound on my body and infect it with MRSA. Their answer: In theory it is possible, but very improbable.

I cultured MRSA after a routine sputum culture during one of my many hospitalizations. [END]

Hope you guys were able to get something from that! If you ever have any questions that come to mind, please don't ever hesitate to contact me by email or through CysticLife or Facebook.

Slacker Monday?

Please excuse the interruption to the regularly scheduled blogging. Today, instead of it being a legit Mandi Monday Blog, I give you a Slacker Mandi Monday Blog.

We had a great weekend in Syracuse, NY and we drove to Cromwell, CT to spend my great aunt's 90th birthday. We are spending today, Monday, with my parents (who also flew here to be here for the festivities), therefore, I spent yesterday and today NOT doing a real blog. However, we will fill you in on all the fun when we're home :)

Just a quick update, our little peanut is still doing well and we will get to see it on Wednesday during an ultrasound - needless to say, I can't wait. I want to see my little munchkin kicking and wiggling all over the place. Plus, I'm pretty sure it must really look like a human now. Still no real belly, but we'll post shots soon.

Sorry for being a slacker, but I assure you that I will not keep it up :)

Is Exercise for CFers Different?

I've had this question posed to me more than a hand full of times both on Facebook and CysticLife, so I thought I would answer it here as well as pull some quotes by other very knowledgeable cysters and fibros. The following question was posed by a fellow cyster and to be honest, I was a little bit shocked by her doctors attitude (although he may have had the best of intentions):

Okay, so whenever I think of excersize, I typically think of going to the gym, riding a bike, jogging, or doing something with a little sweat suit on. Basically, getting strenious excersize. So I told my doctor that I get totally short of breath when I do things like that, and on a bad day it's even hard for me to climb up my stairs at my apartment. So he told me that excersize for us, is basically something that gets your airways stretching and get's you huffing a little hard... And that if we are excersizing to the point of us laying on the floor sucking on our inhalers (which I have done, lol), we are actually probably doing more damage than we are helping ourselves. What do you guys do as far as a 'light load' of excersize, that gets your airways flowing, but doesn't make you totally SOB and have to sit down? I find it hard... Maybe it's just me.

The following was my answer to her:

I think it's important to understand that EVERYBODY sucks a little wind when exercising, especially those of us who are out of shape. I agree with your doctor to a point, but I myself wouldn't accept not striving to exercise like everybody else.

When I recommitted myself to exercising, last year, I couldn't jog 1 minute with out stopping. I got on a running program and in 10 weeks ran 3 miles. It's important to go at your own pace, but to also set yourself a goal and then set out to accomplish this.

It's also important to point out the benefits of exercise to lung health. Last January my FEV1 was in the 20's, I then recommitted to exercise and by October had my FEV1 up to 68%, the highest since 2005!!!

That's what I think is SO important for every cyster and fibro out there to understand, Exercise is tough for everyone, especially when just starting out. Think about it, why else would there be so many people out there that say exercise is their New Year's resolution, EVERY year. It's tough. It's NOT EASY to stick with. And yes, it may be tougher for those of us with CF, but the case can easily be made that it's also more valuable. I've never ever met a fellow CFer that regretted exercising. It's quite the opposite, they're ecstatic. To put it simply, do you find more joy when you accomplish something that took no work or sacrifice or something that took a ton of it?

I like how this fellow fibro put it (who by the way is training for an Ironman):

Even though we have CF we can still do anything anybody else can do our training is just going to be a little harder and we'll have to train a little longer, but we can do it. The biggest thing you have to learn is patience when it comes to endurance with exercise it takes us a little longer to build it up. Stick with exercise, it will only benefit you.

He's so right. We CAN do anything if we set our mind to it. It's often times just a case of setting a goal and doing absolutely everything to accomplish that goal. Don't let setbacks discourage you either, use them as motivation to propel you forward on your mission. Listen, there's days that I just can't drag my lazy butt out to run. It happens. But when it does, I make sure to really step it up the following days to "make up" for the time lost. We have a tendency to allow one bump in the road become an impossible obstacle and it doesn't have to be that way. Get over the bump and then put the pedal to the metal.

My dear friend...

I'm taking this day off of blogging to honor one of my best friends in the CF community.

We'll miss you Marisa and I promise that I will never forget the great times we had together. That first embrace with your sister must have been amazing :)

Question from a reader: Why Parents?

Ever so often, I like to share questions from readers and my answer to them here on the blog. This particular question I get asked quite often, so I figured I would share my answer with all of you.

You seem to direct a lot of your "messages" to parent's of CFers, is there any particular reason why?

So I guess I’ll first talk a bit about why I’m so passionate about CF parents. I truly believe that everything starts with the parents and the sooner we can deliver a message of hope, proactivity and confidence as well as messages like "treat your CF child like you would any other non-CF child" the sooner we can start to shape that child's experience of CF. The sooner we can get parents to buy into that I think, ultimately, the healthier our community will be and that’s what we all want.

I’ve been fortunate in that I've been able to meet so many parents and CFers within the CF community. It is my experience that 99/100 times the child’s attitude toward cystic fibrosis is a 100% true reflection of the parents attitude toward cystic fibrosis. What I mean by that is I have met parents who are very bitter, angry and play the role of the victim very well and wouldn't you know it, I then meet their son or daughter and they are the exact same way. I can tell you as a patient that when you fall into the trap of being a victim or being bitter and angry, unless you are able to harness that into a positive reaction (which most people simply can’t do), it’s very hard to have the energy to really live your life. A pessimistic attitude and a victim's mentality will more likely than not affect your health in a negative way. This isn't just my opinion either, research is constantly coming out that supports this "theory".

Let me give you a real example of this. I was reading through a study a couple of days ago that showed those in the CF community who felt like they were in control of their disease were more likely to exercise. We can debate what came first, the chicken or the egg all day, but I know that this has a direct correlation in my life. One reason I exercise the way that I do is because I truly believe that it has a positive effect on my health and my lung function. When I exercise and do my treatments regularly I feel better and my lung function remains steady (I'll take anything but down!) or goes up. Conversely, when I slack on exercise or treatments, I feel worse and my lung function goes down. Can you see how this can make me feel like I have some control over this disease? Of course my question would be, is it just a feeling or am I actually exhibiting some control? In other words, am I just getting lucky? Like my "good friend" Larry Bird said, "Seems like the harder I work, the luckier I get".

You can call it ignorance or you can call me naive, but I would like to think that the proof is in the pudding. I’ve been sick at times, I’ve been really sick at times, but I never believed that I had lost control and I always believed that I could "get it back". When my doctors would say "this is probably your new baseline" it only motivated me to take a step back, assess what I could be doing better and then work harder going forward.

I really think that if we can get parents to buy into this way of thinking early on and ingrain this attitude, from a very early age into their children, some very positive things can happen. We do have some control over this. Things aren’t always going to go our way, but we have to make sure we wake up every single day and do everything we can to stay one step ahead of this disease. I can say without a shadow of a doubt that CF never takes a day off and so either can I.

I have such a heart for CF parents not only because of that initial shock of getting this diagnosis, but because of the first thing they do, Google it. I really want to change the message that they first find. When a parent newly diagnosed family Googles CF I don’t want them going to sites that are doom and gloom and depressing. I want them going to sites like Run, Sickboy, Run or CysticLife.org and be able to comb through those sites and say "hey there’s hope and we can do something about this". From that point on I would expect them to realize that there are great meds out there and great plans of action, which, if implemented and stuck with, can provide great results and excellent health.

So why do I really like to deliver my message to CF parents? Well, it's because I have a big heart for CF parents and I love the CF community and want all of us to be as healthy as possible, and whether the parents like it or not, it starts with them. No pressure :)