Do you procreate if you have bad genes??

I found this article and the subsequent comments very interesting. To view the comments and full article, click here.

Do you procreate if you have a bad gene? Discuss

January 22, 2010 at 11:27 am by Tracy Ormsbee

I’m reading a gripping and scary novel called “Still Alice,” by Lisa Genova, about a Harvard psychology professor who develops early onset Alzheimer’s. The novel is written from Alice’s perspective so you are in her head as she slowly loses her grip on reality and what’s going on around her.

Bear with me, this does relate to parenting: After she learns she has the disease, she is told that it is genetic and a test exists to screen her three grown children. One of her grown daughters is undergoing fertility treatment to try to have a baby. Alice thinks about what she would have done had she known she carried the gene before she got pregnant.

Would she have conceived these children or taken precautions to prevent them? Would she have been willing to risk the random roll of meiosis? Her amber eyes, John’s aquiline nose, and her presenilin-1. Of course, now, she couldn’t imagine her life without them. But before she had children, before the experience of that primal and previously inconceivable kind of love that came with them, would she have decided it would be better for everyone not to?

This is interesting because most of us carry a gene for disease in our family history. My mother has diabetes and I knew the gene could be passed on. I decided to have children. Part of my decision was based on the fact that my mother took good care of herself and lived a normal life without complications (she continues to do great). I also developed diabetes at 28 after having gestational diabetes with my first pregnancy. My oldest daughter does not have diabetes; my youngest was diagnosed when she was 4. Don’t know how I could possibly have regrets. She lives a normal life on the insulin pump and is perfectly healthy. I would make the decision again today.

In the book “Still Alice,” her daughter decides to have children. Since she is doing in vitro fertilization, they will screen the embryos and only implant those without the gene for Alzheimer’s.

To view the full article and comments, please go to http://blog.timesunion.com/parenting/6222/do-you-procreate-if-you-have-a-bad-gene-discuss/

Confessions of a Chronic Cougher

I received a great question by a mom over in the CysticLife community that I wanted to take the time and answer over here on RSR. Here is her background story with (bolded) questions:

levi has been sick for about a week and now he is to the point where he is coughing while laying down, running around and basically on and off all day. its a wet junky cough and i swear i have been using my stethoscope for the past 3 1/2 years and i never can tell what the heck im hearing if its a wheeze if its not? so anyways the last three times he has been in over the last few months with colds he has not cultured anything not normal so the doc has been going back and forth as to whether or not to admit him so i really dont want to push taking him in because id hate to see him go in at this age. last time he was a champ but he was a little over 2 and honestly would get poked and then forget about it but now he is older and brighter so he knows whats coming he still does really well and isnt afraid of the doctors or anything like that but we want to do what is best for him. he usually gets a cold and starts with a runny nose then he starts to get a wet cough and then he starts the wheeze so most of the time he starts an oral antibiotic and then prednisone. he already does albuterol 3 times a day and his vest 3 times a day for 30 minutes. we started that after his last hospital stay because they did it 3 times a day when he was in so we thought is three better than 2 and they said yes so why the heck wouldnt we continue that if it is better so right now he is doing his vest 3 times a day for 30 minutes and he doesnt mind it at all he actually likes it because that is the only time we let him watch tv that way he looks forward to it and an hr and a half is enough tv in my option for a 3 year old. so anyways he is already doing that all the time so is there anything else you think we could be doing to help him. its hard to because he totally wants to play and run around but then he just coughs more. i usually let him play until he decides its too much or if hes coughing a ton we just do something else like draw or something more calm. anyways i just totally rambled so we are at that place of not knowing what is best. any suggestions or insight to how you feel when you are going through something like this. its hard because he can only tell us so much of how he is feeling. we know his body pretty well but only externally from what we see we see and hear but we cant tell how he is feeling. basically we do all that we can he never misses a treatment well i shouldnt say never (well maybe 2 or three when we go to disneyland or the beach or something fun but basically we are all over his health and do all that we can to keep him healthy. so any advice would be awesome! sorry for rambling. k the boy is off the vest gotta run. we will be in touch. have a great night!

First of all, I can't stress enough that it sounds like you're doing a wonderful job in raising your boy! It sounds like you've found a nice balance between his life and his cystic life. A couple things I would say to you however...

One, coughing does not always mean sick. I'm a chronic cougher. There, I said it. No seriously though, I cough all of the time. I've coughed since I was his age and I continue to cough now. I coughed when my lung function was over 100 percent and I cough now with it in the 60's. Point is this, it's important to look for other signs that your child is giving in order to determine an exacerbation or not. You can check mine off the list every time I get sick. I'm more tired but I sleep less. I have to force myself to eat. I wake up in the middle of the night coughing; all night long. I usually wake up more tired than when I went to bed. I have a REALLY tough time motivating myself to exercise. My stools float more. They're stinkier. I'm generally nauseated. And I can't get my mucus to ever be clear at any point of the day. Whew!! I know, quite a list. But, it's important to note, that that is MY list. As a parent, you want to make mental notes about some things that ALWAYS happen when they are really getting CF sick. For me, coughing isn't one of them. I'm always doing it.

It sounds like you have your son on a very strict treatment regiment. Here's a couple of things I would try to switch it up. Have you ever thought about hand pounds? For me (apart from running), nothing works better at getting the mucus up and out. Ultimately, that's what is important. Getting the gunk out of there. If you can manage the mucus, you can manage Cystic Fibrosis. Is there something that ALWAYS gets your son coughing? It sounds like it may be just running around and playing. I would suggest having him do that more. There's nothing magical about the vest, I hate to break it to you. I mean, it does a great job for most people in doing it's job, but it's not the only horse in the race. We as a community have to figure out what works best for us at clearing out our lungs and forcing us to take deep breaths. You, as his mother, have that responsibility for your young son.

Also, to get back to what you hear when you listen to Levi. You may never hear him wheeze. In my 30 years, the doctors have told me that they have heard me wheeze less than 5 times. In fact, 9 out of 10 times, even while in the hospital, they say I sound "pretty good". Maybe it's because of all that coughing I'm doing :)

Last piece of advice. Use your instincts as a mother. There's no guide out there written specifically on how to manage your son's CF. We're all different. Sure, we can take bits from some and pieces from others, but like I say to people all of the time, "You're CF has NOTHING to do with anybody else's CF". The proverbial different strokes for different folks. Don't ever make decisions based on being the mother of a child with CF; make decisions based on being the mother of a child.

Thankful for Random Acts of Kindness

Today, I am SOOOOO thankful for random acts of kindness. I am fortunate to experience many random acts of kindness by many of you pretty regularly, but I wanted to point out one that really touched me recently. I'm not going to mention any names (since I haven't got their permission to do so), but a mother/daughter team within the CF community really put a smile on my face this week.

It all started with an email on CysticLife that I received on Sunday:

Very Nice Cyster: Hey Ronnie, so being from Louisiana an all we celebrate Mardi Gras pretty big and of course eat ALOT of King Cake.. We have some really good bakerys that make them fresh daily and ship them out all over the place and me and my mom would LOVE to send You and Mandi one .. we just need to know where to send it

Me: Wow!!!! What did we do to deserve that?!?!? And what exactly is King Cake? You guys are too good to us :)

VNC: well i dont even know how to describe it lol.. it kinda looks like a huge donut with iceing and some have fillings but it taste nothing like a donut.. it taste soo much better .. the tradition is that there is a baby hidden in the cake and who ever gets the baby has to buy the next king cake .. lets just say in the one month of the year when they make king cakes i gain bout 10 pounds.lol. not really but im sure i gain some haha...You guys are AWESOME for creating this site and mom an I enjoy it soooo much.. so we thought you might enjoy a king cake .. its soo much better than jelly beans haha

Me: I look forward to it!!! Should I have it tested for poison first? You don't hate me right??? :)

VNC: lol I promise there is no poison in it.

And wouldn't you know it, Wednesday afternoon I received a big ol' package with "KING CAKE" written across the top. It was a very colorful box that looked like a big Mardi Gras party. Inside was the real treat though. When I opened the box, I discovered beads, a Mardi Gras mask, more beads, a King Cake, beads, a story explaining the history of the King Cake and, oh yeah, a handful of beads. I was beaded out today!

It really felt like this family was sharing a part of themselves with me and I found that to be very special. I can't explain to you guys how happy I was to receive this package and that fact that they thought to include me in there Mardi Gras cheer was very humbling. I certainly never expect anything like this ever to happen, but when it does, it really warms my heart. We have such a strong, loving and caring community out there and I am so happy that I'm able to be a small part of it.

Made a Turn During a Hiking Blog

Yesterday I did something that I haven't done for quite a long time. Hiking. In fact, I haven't been on a hike since Mandi and I got engaged. We actually hiked the same trail yesterday, but didn't quite make it to the top. It was a very leisurely hike, but still challenged me quite a bit. To be honest, I wasn't really looking forward to it. I had just gotten into a nice groove with work, when Mandi came into the office and said, "Get your shoes on, we're going for a hike!". Uh, ok.

I don't know what I would do without that girl. Well, besides work more but work out less :) She does her best to keep me from working 10 hour days 7 days a week and for that, I am grateful. The problem is, once I get rolling and focused, it's hard for me to snap out of it. Mandi has figured out a good way to work through that, it's called "leaving me with no other choice by using my own words against me". She will literally quote to me things she has heard me say to other people to motivate them or to get the message of exercise and lung function out there. I mean, I can't really argue with that. And let me tell you, I love her for it.

During yesterday's hike, Mandi continued to push me all the way to the end. She's a great coach. She's a great motivator. She's a great fiancee. I've really found something special in her. I know for a fact that I wouldn't be where I'm at today without her and she's the motivating factor for me to get to where I want to be.

It's funny, this blog was going to be a blog about switching up your exercise routine to keep your body guessing. Hiking is a great way to switch it up. Somewhere in paragraph two I made a turn and never recovered. Oh well, I'll just have to cover that topic another day!

Top Ten Things I Love About My Morning Walk

If you've been reading this blog for a while then you know that one thing I highly recommend is a morning walk. I truly believe that for me, my morning walk is more important for me than even some of my treatments. Not only can it serve as a good physical treatment, but it can serve a good mental treatment as well. If you're thinking about starting an exercise program but just don't know where to begin, I suggest starting with a brisk 15 minute walk first thing out of bed. Those that have tried have reported back nothing but good things!

So here it is, the top ten things I like about my morning walk:

10. Get to spend some quality time with my (four-legged) girl

I don't know who is more excited in the morning, me or Jezzabel...wait, that's an easy one, it's by far JBell. She can barely contain herself as I put on my shoes and wait for her command, "Get your leash".

9. It's peaceful

Often times I find that it's just me and the world...and people in their cars leaving for work.

8. It's nippy (cold)

Arizona doesn't hardly ever get down right cold, so we have to find joy when it's just a little bit cold outside, even if by "a little bit", we mean 50 degrees.

7. Feels good to get up and start moving right away

If I transition from my bed to a couch or chair to drink my coffee first, it still kind of feels like I'm sleeping. There's just something about getting right up and at em!

6. It always smells so clean outside first thing in the morning

I know you guys know that smell I'm talking about (unless you live in NYC) :)

5. It's a good time to start preparing for the day

I'll often go over my checklist for the day and start thinking ahead of time about priorities that need to be done first and those things that I can push off until tomorrow :)

4. It forces me to take deep breaths before my treatments

The morning walk definitely serves as a good lung exercise. I find that if I take a walk first, my lungs can generally expand more during my nebs.

3. It gets me hungrier

Often times, instead of thinking about what I have to do that day, I just think about what I'll eat when I get back home.

2. I cough up more junk during my morning walk than I do my morning Vest

If I ever got lost on my morning walk, I could just follow a trail of my mucus back to the house. It gives a whole new meaning to the yellow brick road :)

1. My lungs always feel more clear on the days I get my walk in

I'd say this one is pretty self-explanatory. Bottom line: I feel better the days I go for a walk first thing in the morning.

Do you guys take walks in the morning? If so. what do you love about them? If not, why?

Confessions from a Football Dummy: Superbowl Edition

Welp I said it. I'm a football idiot. I get the basics...you know, 4 quarters, touchdowns, field goals, I even know 4 downs. I get the basic rules. But when it comes to team names, strategy, players and the like, I'm LOST. Ronnie on the other hand is a football wiz kid. He knows current players, past players, records, strategy, EVERYTHING. (For those of you who don't know, Ronnie coached football for 7 years and played through high school...which by the way, he'll never tell you this, but he's in the high school football hall of fame. I found that out only recently, but it's a fun fact that I thought I would share with you!!) Anyways, I tell you all of this, to explain the incredible divide between my football watching and his. Every weekend we watch football, both college and pro, and I generally sit, uninterested and unhappy that we're "wasting a day" with games. Buuuuut the Superbowl provides us both with entertainment. He watches the game, and enjoys the commercials, I JUST watch the commercials and half time show.

I must say, I was underwhelmed by the ads this year. In fact, I was trying to think of my favorite, and I had a tough time even remembering the ads that were on. I did notice that Doritos and Bud Light were all over advertising this year. I wonder if they even have an advertising budget left, and it's only February.

I loved Carrie Underwood's National Anthem at the beginning. But I'm pretty sure it could have been terrible and I would have loved it. I just love Carrie Underwood. She is so adorable and man can she sing.

As for the half time show - who decided that The Who would be the half time show? That's all I have to say about that. My favorite half time show was still years ago when Bon Jovi, Justin Timberlake and Britney Spears performed together. I think that was like 5 years ago though, so I'm not sure who's been organizing these half time shows lately, but I'd really like them to step up their artist selections!!

ANNNND there you have it. Those are my takeaways from the Superbowl this year. What were yours? Did you have a favorite ad? Please refresh my memory and tell me a few. Did your team win? Lose? What'd you think of the half time show? And lastly, who can tell me how they get the computer generated yellow line on the field to not show up on the players?

What I Did to Increase My Lung Function

Guest Post by Nicole

Hi everyone! After reading my blog (link to http://niki36.blogspot.com/) and seeing how I greatly increased my PFT’s in one month‘s time, Ronnie asked me to write about how I did it. RSBR is so inspiring and gives so much motivation to CFers, that of course I was honored. So thanks, Ronnie, for this opportunity!

Now, when I sat down to write this, the first thing I thought of was “well, of course, medications are the reason why my lung function went up.” That is true...in part. In addition to my normal daily routine, over the last few weeks I have been taking Singulair, Augmentin, 7% hypertonic saline and Tobi (because it is my “on” month). It is possible that this combination had some miracle powers to it, but I have a slightly different theory.

One month ago, my FEV1 was 35% and my FVC was 48%…the lowest I ever remember my numbers being in recent years. This. Scared. Me. I started on the above routine, but most of all, I stuck with it. Compliance is key in cystic fibrosis. I have always been pretty good about treatments and pills, which I believe has kept me healthy this far. That being said, it has only been the past 6 months or so that I’ve done Tobi like I should and this is the first time I’ve stuck with the hypertonic saline. It is a pain in the ass to sit for treatments that last over 3 hours a day. There are plenty of other ways I’d like to spend my time. But this improvement made me see that it is worth it. Yesterday my FEV1 was 51% and my FVC was 73%. My goal now is to get my FEV1 in at least the 60’s and my FVC in the 80’s. I will continue my compliance with medications and I am going to start an exercise routine because I know, as do all of you who read RSBR, that makes a difference.

Now, I know there are many CFers that feel like they can’t improve their PFT numbers; that once their numbers drop that is their new baseline. Well, I don’t believe that is true. I think that with medications, compliance, and exercise it is very possible to achieve greater lung function. I challenge you to give it a try, push yourself and in a couple months you WILL see a difference. It is so worth it. The couple hours a day of treatments can add years to your life.

There is one more thing I would like to talk about and that is asthma and allergies in CF patients. A month ago, when my numbers were so low, I felt short of breath and had a tightness that just wouldn’t go away. That is when I added the Singulair, which I had taken during Spring allergies earlier this year. I must say that I think it made a HUGE difference. This Fall season is hard on a lot of us and I encourage you to look into different treatments for those symptoms. My doctor also told me to start taking Zyrtec to see if that helps me even further. Sometimes we are so busy treating CF that we forget about other underlying issues. It is very common for people with CF to also have asthma -if you have wheezing, shortness of breath, or tightness talk to your doctor and see if asthma or allergy medication may be beneficial to you. I felt like nothing was going to make me feel better, and who knew one little pill would do so much?

I hope that you find inspiration (whether from my post, RSBR or from another amazing CFer) to give it a try and take charge of your life. You CAN improve your situation and I’d love to hear how you do it!


Bio:

My name is Nicole and I am 25 years old. I was diagnosed with CF at age 2 and with CFRD at age 13. I am an Army wife and have been married to my wonderful husband Rob for 3 years. We are originally from NY, currently stationed in NC and will soon be moving to GA. I enjoy traveling, cooking, and spoiling my furbaby Brooklyn - a 3 year old rottie rescue. My next goal in life is to overcome infertility and experience the joys of motherhood.

Note from Ronnie: I just wanted to give a big thank you to Nicole for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that she could do more to manage her disease and then acted upon it. She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Nicole your encouraging comments as well as any questions you may have!

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

Forced Indoor Air Ionization to Treat Cystic Fibrosis

I ran across this article the other day and I found it interesting so I thought I would share:

FORCED INDOOR AIR IONIZATION BY SALT SUBLIMATION MAY IMPROVE RESPIRATORY SYMPTOMS IN CYSTIC FIBROSIS

Forced ionization of indoor air by salt sublimation may improve respiratory symptoms in cystic fibrosis (CF), said a researcher in a presentation at the 24th European Cystic Fibrosis conference in Vienna, Austria.

The use of speleotherapy in many Central and Eastern European countries is well spread and well-known and in these countries doctors recommend this therapy to their patients.

The term speleotherapy comes from the Greek ‘speleo’ that means ‘cave’ – the therapy in a salt mine. Many, many people with all kinds of respiratory diseases use this therapy as a complementary or alternative therapy to the classical drug therapy and find great relief.

Being very effective but in the same time costly by having fixed location and the treatment implying multiple sessions, this physical therapy has been practiced in Balkans for over 150 years.

In an effort to find a way to use this therapy at home, a Romanian chemist engineer have researched and developed a device that is able to simulate the salt mine micro-environment in the comfort of your home. He have analyzed the air composition in a salt mine and found the way to grow salt micro particles as those found in a salt mine, using only natural mineral halite salt crystals formed in the Middle Miocene era from the salt mine.

All the research work was followed by clinical studies at different clinics in Romania. Now, the device uses forced indoor air ionization by salt sublimation and give so much relief in many respiratory conditions.

One of the clinical studies that have been done is regarding the effect of Salin device in patients with cystic fibrosis. Doctor Ioan Popa and his colleagues from a paediatric clinic in Buzau, Romania, investigated 18 patients with their age between 3 and 17 years old, with mild to severe cystic fibrosis.

This study has been realized within a 6 months interval on the two lots that were created. Seventy percent were diagnosed as having mild cystic fibrosis and thirty percent were severe. The two lots were created based on the stage of the diseases, their FEV1, colonisation with Pseudomonas aeruginosa and/or Staphylococcus aureus and other respiratory conditions.

The first lot used the Salin device approximately 8-10 hours/day. The control lot used the Salin for the same period of time but the device worked without the salt plates, so without forced ionization of the indoor air by salt sublimation.

In the lot I was noted a significant improvement of the clinical state and a subjective estimation “for better” have been seen by the patients, respectively by their parents especially in those that have been more seriously affected.

Objective symptoms of the disease, as sputum analysis, respiratory function, crackles at auscultation and FEV1, showed improvements from pre-treatment. In the control lot there were no changes similar to those from lot I.

On clinical examination, the patients receiving the active treatment were noted to have an increase of the sputum elimination at first stage followed by a significant reducing of its quantity, improvement of the respiratory functional syndrome, less crackles at auscultation and an improvement of FEV1. No patients receiving the active treatment have showed acute episodes of respiratory disease that should require another hospitalization for the duration of the treatment.

The authors concluded that forced ionization of the indoor air represents a natural and efficient treatment for respiratory diseases in patients with cystic fibrosis. This treatment could be used alongside with the classical therapy, doesn’t have any side effects and has a quite modest cost.

For more information, clinical studies and testimonials please click on salt therapy.

NB: The author grants reprint permission to opt-in publications and websites so long as the copyright and by-line are included intact and the article is not used in spam.

By: Livia Tiba

You can find the full original article at http://whatiscysticfibrosis.org/cystic-fibrosis/forced-indoor-air-ionization-by-salt-sublimation-may-improve-respiratory-symptoms-in-cystic-fibrosis

First Ever Blog Buttons for CysticLife!!

These buttons are a work in progress, but I wanted to get them out at the request of many of you who read this blog. You can grab one of these buttons by inserting the code below the image into the HTML/Javascript widget option on blogspot. If you have any issues or have any suggestions for buttons, please let me know. Let's continue to raise awareness together and take this thing to a whole new level! (If you add a button to your blog please let me know so I can check it out! I'm interested to see which one will be most popular :) )



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I Can't Compete with This...

So I was going to write a big ol' Thankful Thursday blog until Mandi had me watch this...with tears rolling down from her eyes. Seriously? How am I supposed to compete with is?

I think that pretty much covered everything I'm thankful for as well :)

Run/Walk Challenge 2010

Hey everybody!! First, I just wanted to thank you all for the kind birthday wishes both on here and an Facebook. You guys went above and beyond and definitely made me feel special on the 30th b-day.

So, I was contemplating something yesterday and I wanted to get the RSR readers input on it before I "pull the trigger". I was thinking about bringing back the run walk challenge. Some of you from FB may remember the run/walk challenge from when I was in the hospital. It was pretty simple. Everyday that I went for a run or walk, I would document it on Facebook and "challenge" the community to match me. If I ran for 15 minutes, the challenge would be to either run for 15 as well, or walk for thirty. It seemed to catch on with many of you and I believe we had about 20 people taking part of the challenge.

Here's the questions for you all: Would you guys like me to get it started again? What shall we call it? Would you like to match time or distance? Should there be a maximum amount of days per week that the challenge can take place? What do you think the best way to track your individual performance would be?

I think that's all of the questions that I have for now! If you guys can think of anything I'm missing, please bring it to my attention. I look forward to seeing what this can possibly bring about!!!

Top Ten Reasons My Run Stunk Yesterday

Yesterday I decided to go for the last run of my 29th year. I haven't been nearly as consistent with running as I would like to be (I seem to be going on more long walks) and I knew that I would need to set a tone going into my 30th year! I wanted to tell my body who was boss, so instead of my usual warm up walk, I took off running only after about 2 minutes of walking. To challenge myself even further, I decided to do the first half of the run uphill (I'm not sure I really planned on making it to the top, but I knew it would be a nice reward on the way back down).

I spent almost the entire time up the hill trying to talk myself into stopping. I'm serious. On a handful of occasions I actually picked a landmark I would run to and then start walking from there, problem is, I actually never did stop. I guess it's not a problem per say, but it sure felt like it at the time.

I've created the "top ten problems with my run from yesterday" list. I assure you, (and if you've been reading RSR for any amount of time, you know this to be true) I did not create this list to complain. I created this list so all of you would know that you're not alone. I know that you guys attempting to run or exercise are having many of these same problems. I'm hoping that this list can provide some encouragement that you can in fact push through it and accomplish your goals!

Believe me, I wanted to give into my body. But after 2.6 miles of showing it who is boss, I feel AMAZING. I coughed up so much mucus that I won't be surprised if the city fines me to clean it up :) My lungs feel SO wide open and I'm taking deeper breaths today, than I did probably all of last week...just in time for my 30th birthday!

10. My left arch started to really hurt

9. My right ball of my foot was burning

8. I had a stitch in my side that wouldn't go away

7. I kept on burping up BBQ Chicken

6. My legs felt deader than a doorknob

5. I started to get a headache half way through the run

4. It felt like I was pulling for air...

3. ...and the air I was pulling in was really cold and made my lungs tighten up

2. It was really cold outside (so I put on a long sleeve shirt) but...

1. ...when I really got into my run it was too hot (but I couldn't take off said long sleeve shirt cause then it would be too cold)

Does this list look familiar? If it does, you're not alone. Working out is hard for EVERYONE. There isn't one person that I know who doesn't try to talk themselves out of running why they're doing it. Just keep pushing forward! I KNOW you can continue to push farther and farther as long as real effort is there :)

An Oldie But a Goodie: Top 10 Traits Cystic Fibrosis has Instilled in Ronnie

**SO yesterday, two days ago, every day before two days ago, this morning, this afternoon, and right now I was thinking about how much I love Ronnie (I know I know, young couples in love are so sappy). Since I've been thinking a lot about how wonderful I think Ronnie is lately, I thought I'd re-post a blog that I posted a few months back. It's all about how wonderful Ronnie is, and in many ways, thanks to CF. It's always important to remember what positives can come from CF and I don't mind loving up on my fiance every now and then!

As some of you have read in past posts, I often say that I'd rather have Ronnie with CF, than date the man Ronnie would be without it. I truly mean that. I believe Ronnie has been shaped by his CF and many of the character traits that I have fallen in love with have been instilled in him because of his CF. Here's the top 10:

10. Reliance - When Ronnie is sick, he is forced to rely on others. When Ronnie's well, he insists other's rely on him. He understands the beauty of symbiotic relationships. He understands the give and take in a healthy relationship. I love that he isn't too proud to allow me to take care of him when he's feeling off and his insistence that others rely on him.

9. Acceptance - Ronnie's accepts the fact that his has CF; he embraces it. He has realized that not everything is in our control, and when you can't control a reality what can you do? Accept it. Since he was young, Ronnie has owned his CF, been proud of it...even flaunted it. There is much to be said about someone who can take a challenge, accept it, and embrace it.

8. Discipline - It is not easy to get up an extra 30 min to an hour and a half early every day before school. It is not easy to remember to take meds every morning. It is not easy to exercise 6 out of the 7 days in the weeks, especially when it hurts. To manage his CF, Ronnie has been required to do all of these things. The result? Discipline.

7. Optimism - Ronnie understands there are 2 ways to view life: the glass half empty and the glass half full. Many people who have hard times or struggle at times find it all too easy to view the glass half empty. Ronnie, on the other hand, has realized that CF can present daily struggles, and makes it very easy to ALWAYS see the glass half empty, so he has made the choice to always be optimistic.

6. Perseverance - CF has a way of knocking you on your butt when you least expect it, and often times knocking you back down right when you get back up. In order to continually get back up, you have to persevere. A good example of his perseverance is when he was in for 50 days last winter. Each week he would work out, rest, eat well, each week he thought it would be the week he could get out, and each week his lung function didn't budge. So what did he do the next week? He worked harder!! And eventually, after much hard work and perseverance, he got out.

5. Patience - Ronnie is the most patient person I have ever met. He understands that not everything will be done in his own timing. Not better after 30 days in the hospital? Wait until you are better to get out. Want to go on vacation, but it's time for a hospital stay? Wait to go on vacation. Want a cure for CF? Wait for a cure.

4. Appreciation - Ronnie appreciates every day. Being told from a young age that your life may be shorter than most, you begin to cherish every day, every memory, every breath. When it comes to life, Ronnie takes it all in. He notices beautiful sunsets, a good cup of coffee, a good joke. He never rushes. Why rush life, he asks? He enjoys every day and doesn't let those around him busy themselves too much so that they don't stop and smell the roses.

3. Perspective - Ronnie is really good as putting things in perspective. I often fret about the little things. The things that a year from now won't matter. He has a great perspective on life. He enjoys the good, brushes off the bad and realizes that most things here on earth won't matter in the end.

2. Faithfulness (and Trust) - Ronnie has eternal faith. He truly believes that God will work everything out in His way and in His timing. He continues on, praying, trusting and believing that everything with work itself out. When things don't work out the way he envisioned or hoped they would, he embraces the reality with a smile on his face, trusting it is the way it should be.

1. Humor - Sometimes when times are hard, all you can do is laugh. Ronnie can make just about anything funny. There aren't many occasions when Ronnie isn't cracking a joke or any topic that is off limits to be the butt of one or two jokes. With only one of two words, Ronnie can have me laughing with tears running down my face. He is the funniest person I have ever met!

**PS - These are in no particular order. I "hmm'ed and haw'ed" and couldn't decide on a good order!!!

One of My Favorite Cystic Fibrosis Awareness Videos

This video really pulls at my heart strings and is very well done. Enjoy and pass it on!

Cystic Fibrosis and Me- A CF Short Film

Here is a short-film from my Fibro Casey who lives out in the great state of Texas. This film documents his daily morning routine and does a good job of portraying a typical morning for may of us CFers. Make sure you watch until the very end, my favorite part is one of the last scenes and it had me laughing out loud (when you see his feet on the ceiling you'll know what I'm talking about).

**Sickboy does not endorse anything in this video as medical advice...although I have told many woman in the past that I'm a brain surgeon (on my days off from being a rocket scientist)**

Hypertonic Saline Solution (7%)

I pulled this cool article about Hypertonic Saline (HTS) from Cystic Fibrosis Worldwide. I thought it was an pretty interesting read and I learned some things about 7% that I had never known before. Also, keep in mind that it is an older article so some of this stuff may seem a little dated. Enjoy!!!

About Hypertonic Saline

Hypertonic Saline (HS) is just a strong salt-water solution. The concentration used is typically about 7% salt - that is, about twice as salty as seawater — although sometimes weaker or stronger concentrations are used. Hypertonic saline can be turned into a mist by a simple device called a nebuliser. The mist can then be inhaled into the lungs.

How Does Hypertonic Saline Help in CF?

When Hypertonic Saline is inhaled into the lungs, the body tries to dilute the strong salt concentration. The cells lining the airways are triggered to release water. This restores the layer of moisture lining the airways, which helps the mucus to clear the same way it does in healthy lungs. You could think of it as the lungs “flushing out” the stagnant, infected mucus.

Studies done during the mid 1990s showed that inhaling nebulised Hypertonic Saline temporarily increases the speed at which mucus is cleared from the lungs. Subsequent short-term trials showed that inhaling nebulised Hypertonic Saline on a regular basis (usually twice per day) improves lung function in PWCF.

What was the recent trial about?

Although the short-term trials were favourable, it was not known whether Hypertonic Saline is safe and effective when used for long periods. The National Hypertonic Saline Trial tested 164 stable subjects with CF aged at least 6 years of age. These subjects were randomly allocated to inhale either 4mL of Hypertonic Saline (7% saline) or 4mL of placebo (a very weak salt solution — less than one third as salty as sea water). Both solutions contained an inert substance to disguise the taste, so subjects didn’t know which solution they were inhaling. The subjects inhaled their allocated solution twice daily for 48 weeks. They kept up all their other standard therapies, and received whatever additional treatment they normally would whenever they had a flare-up. Patients were checked regularly for signs of improvement, as well as for any possible adverse effects.

What did the trial show?

The main outcome of the trial was lung function — a breathing test, which measures how well the lungs, can shift air in and out. The subjects who were inhaling the Hypertonic Saline had a modest rise in their lung function at the first measurement point (that is, after 4 weeks). This improvement was maintained until at least the last measurement point (that is, 48 weeks).
A much greater effect was seen on the flare-ups of lung infection. The subjects who were inhaling Hypertonic Saline had far fewer flare-ups. The flare-ups they did have tended to be milder, not lasting as long. Although both groups of subjects used a lot of antibiotics to try to prevent flare-ups, those inhaling Hypertonic Saline needed significantly fewer “extra” antibiotics for flare-ups.

Those subjects who were inhaling Hypertonic Saline also reported improved attendance at school, work or other usual activities. On average, those inhaling the placebo missed 17 more days of school/work than those inhaling Hypertonic Saline. People inhaling Hypertonic Saline also felt like their overall health and quality of life was better.

Were there any adverse effects?

Hypertonic Saline can cause the airways to narrow — just like they can do in asthma. In the National Hypertonic Saline Trial, all subjects took a drug to open their airways, called a bronchodilator, just before each dose. This was very effective in limiting the amount of airway narrowing. For this reason, it is strongly recommended that:

• people with CF take a bronchodilator before each dose of Hypertonic Saline and that
• people with CF are supervised when they inhale their first dose of Hypertonic Saline.

Their lung function should be measured before and after the dose, to check that the bronchodilator is strong enough to prevent significant airway narrowing.

Those subjects inhaling Hypertonic Saline also reported more coughing during and immediately after their inhalations. Thus, coughing should be expected when using Hypertonic Saline. However, the coughing tended to settle within the first few doses, the first few days, or at the most, the first few weeks. The coughing was severe enough to prevent people from using Hypertonic Saline in the longterm in only a very small number of cases. In practice, a lower concentration of saline may be more tolerable for these people.

The lungs were also assessed very closely for signs that the constant inhalation of Hypertonic Saline was causing more inflammation in the lungs. There was no evidence of this at all. Also, the use of Hypertonic Saline did not affect which bacteria were found in the lungs, nor their concentration in the mucus.

http://www.cfww.org/pub/english/cfwnl/7/619/Hypertonic_Saline_Research

Thankful for Kevin Foster

Today, I'm very thankful for the life of a friend of mine, Kevin Foster. Kevin died earlier this week and although I'll miss having him around during my hospital stays, I know that he was ready to go Home. Some of you may be thinking that this is a sad blog, but it is not. It is a blog of joy for what Kevin was and for what he did for me in my CF journey.

I met Kevin many many years ago when I was just a kid. He was probably around 30 or so when I met him and I just remember feeling so inspired by his zest for life. Now, let me also say this, Kevin LIVED and when I say lived, I mean it (I feel comfortable talking about this stuff because Kevin and I had talked to lengths about it). Kevin lived a life that would have killed off most "normal" men in their 20's. Kevin drank. Kevin partied. Kevin went to prison. Shoot, Kevin even smoked. This probably sounds crazy, but Kevin gave me A LOT of hope.

I remember thinking as a teenager, "If Kevin can live into his 30's and NOT take care of himself, imagine what I can do if I commit to treatments and exercise". Then when Kevin got into his 40's, it just gave me more motivation. He used to joke around a lot about "living on borrowed time" and that he "should have died decades ago". I know he just looked at it as playful banter with me, but what he didn't know was the confidence it gave me to take control of my life.

This is also a blog to remind all of you to take your health seriously and make wise choices. For various reasons, Kevin was denied a lung transplant, twice. Transplant boards don't look too highly on those with a reckless past and possible drug and alcohol addictions. Everybody knew that Kevin wasn't a good candidate and although he never said it out loud, so did he.

The last time Kevin and I spoke, no more than a couple of weeks ago, he was ready. He gave it the "old college try" (for 48 1/2 years) as he put it (when he was born they said he'd live till 5). He was ready to move on and was 100% comfortable in doing so. My last moments with Kevin were perfectly tender as we held hands and said a prayer. It wasn't an appropriate time to thank him for showing me that I could take CF head-on and that I learned so much from his accomplishments (and mistakes), but I told him I loved him as I left. I honestly thought that I would get the chance to see him again and tell him "thank you". I never did get that chance.

So here it goes Kevin. Thank you for being you. You were no angel, but you put a smile on my face every time I saw you. You were no saint, but you had one of the most loving hearts that I have ever been around. You were in no way a "model CFer", but in a strange way, you showed me how to be one. Most of all Kevin, you were a true friend to me and although I didn't say it before, I'm saying it now, THANK YOU. I love ya brother.

Stick with Exercise!!

I wanted to highlight a special fibro in the CF community named Mike Price. This dude has incredible determination and is out to do things that have never been done before by members of the CF community. If you ever get a chance to talk with him, you'll be super impressed with his positive attitude and go get em spirit. He's the perfect role model for younger (and older) fibros and cysters out in the community!

He recently responded to a post on CysticLife about exercise and whether to limit it because of CF. This woman's doctor basically said that exercise was different for those of us with CF and that we shouldn't "push it". HOG WASH!!!!

Here's Mike's response:

I'm currently training for an Ironman 70.3 triathlon. A 1.2 mile swim, 56 mile bike ride, then 13.1 mile run. It's the best thing that could have ever happened to me. When I first started swimming, riding, and running it really sucked because I had no endurance and I got winded very quickly. It takes time and it can be painful but you will get stronger you just have to stick with it.

When I was in high school I thought the mile would be the death of me and I'd never run anything further than that in my entire life. Last September I ran a half marathon in 2:31:43, it's not the fastest time but I still beat a lot of people.

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.

See what I mean? This guy doesn't take "no" for an answer. He's not going to let some faulty cells in his body determine what he can or cannot do. We need more fibros and cysters like this out in the community! Great thing is, that wouldn't be a far cry if we would just pick ourselves up by the bootstraps and say "enough is enough!!!!".

Top Ten Foods I Order at a Restaurant

I thought it would be fun to construct a list about the top ten food items you will generally find me ordering anytime I go out to eat. One thing you may notice is that some of these items can be found on the same menu at some places. So what do I do when that happens? Well, I tried to put them in order from absolutely most favorite down to least (most) favorite. Luckily, there isn't many times that I am faced with such a large conflict :)

10. Reuben Sandwich- To be honest with you guys, I'm not even sure that I know what meat is actually on a Reuben. Here's what I do know however, I lover sauerkraut. This is generally my fall back order if nothing else on the menu looks good at the time. Oh yeah, I add a lot of yellow mustard too.

9. Turkey Club- This one is always a little touch and go. Sometimes these will come out and be huge disappointments, but other times they will totally hit the spot. I don't do any mayo on it however as I prefer yellow mustard and if I can get extra bacon (for free), I'll take that too.

8. Ham, Tomato, Spinach and Swiss Omelet- No place that I've ever been to actually has this exact omelet, so I often just do the ol' "create your own". I usually go light on the cheese and I can switch to cheddar or provolone on a moments notice :)

7. Shredded Beef Chimichanga (enchilada style)- If I go to a Mexican restaurant, this is what I'll get 9 times out of 10. If it's a restaurant that I've never been to before, it will be 10 times out of 10. If a Mexican place can't make a good shredded beef chimichanga, then I say it's "no bueno".

6. Chicken Tortilla Soup- This is the only thing I have ever gotten at a restaurant around these parts called Islands. They are known for their burgers, but they have all you can eat chicken tortilla soup for like 5 bucks. I've tried many many times not to get it, but it just ain't happening. I'll also order this wherever I am if it happens to be their soup of the day.

5. Fried Zucchini- I actually got hooked on these at University Medical Center in Tucson. The cafeteria used to have these on hand at all times, so I would go down with my food pass and order a bunch with ketchup and cheese (not mixed together) to dip them in. The hospital no longer carries them, so my tune-ups in the Hole just aren't the same anymore!

4. Chicken Caesar Salad- I wouldn't touch salad until about my Sophomore year of college. I thought that a bed of lettuce drenched in anything just wasn't for me. That is, until I gave caesar a chance. Now, I will ONLY get a chicken caesar salad at a handful of restaurants that I go to, namely Cheesecake Factory and California Pizza Kitchen.

3. Chili Cheese Fries- I LOVE chili cheese fries!! It really doesn't matter where they're from either, I'll eat them. This was another food item that the hospital USED TO carry and I fondly remember hanging out with the RT's in the cafeteria at around midnight scarfing down a couple orders of these delightful treats.

2. Chicken Parmesan- This is my go to at any Italian restaurant. It's good pretty much no matter what and I can't think of a time I was disappointed after ordering it. I love chicken. I love marinara sauce. Therefore, I love chicken parmesan.

1. Chicken Fried Steak (breakfast or dinner)- If I'm eating at a breakfast spot and they have chicken fried steak, you can almost bet your bottom dollar that I'll be getting it. If they have it at a dinner spot served with mashed potatoes and corn, you can count me in 99 out of 100 times. I think my obsession with cube steak breaded and fried goes back to my Furr's or Luby's Cafeteria days.

So that's it! How does your list compare? Is it as chicken heavy as mine?? I'd love you to fill me in on your favorites!

Early Thoughts on Marrying a CFer

I was contacted earlier this week by a girl that is dating a CFer. She asked how I deal with everything that comes along with dating someone with CF, namely, the possibility of sickness and death. It was a good opportunity for me to put into words what I've thought for so long regarding that issue. Ronnie and I talked very early on about those possibilities and I had a very set way I required myself to think about it all before I would marry Ronnie. Here is my exact response:

"Let me tell you, first and foremost, I am still learning how to navigate all of this myself. Ronnie and I have been together for a little over 1.5 years, so I am relatively new to the game. But it is something I am getting comfortable with.

Here are my thoughts on all of it. Initially, it was scary. Ronnie and I talked very early on about the possibilities. We talked about the uncertainty that comes with CF, and not only death, but the hospital bouts, the good and bad days, etc. I learned early on that CF was something he felt was a blessing in his life and I would need to adopt the same perspective if this was ever going to work. I then began to think about life as a widow. As in, if Ronnie were to die in the early part of our marriage, how would that be for me. How would life look? How would I choose to move on? Would I be able to pick myself up? Would I be happy? These were all important questions for me to answer. Ronnie and I truly believe he is here for a purpose and that he has CF for a reason, and when he is done carrying out his purpose, he'll die. Ronnie has been comfortable with the thought of death and with God's plan for his life, so I knew that if I were his wife, and lost him, I would NEED to continue to have that attitude. I told him that I wouldn't marry him unless I KNEW that I could stand up the next day, put a smile on my face, and look people in the eye when telling them that Ronnie's life was just as it was supposed to be and that I trusted God's plan. So I quickly worked to get my thinking aligned with that so I knew that I could carry on Ronnie's attitude after he died. I don't know if that makes any sense, but that's where I am with all of it.

I still struggle. I cry at the thought of it. I get choked up when I think about it. I get choked up talking to others that have lost a spouse to CF. But I truly feel any amount of life with Ronnie is worth it to me. There is a huge religious aspect of this for me and Ronnie, and I'm certain that helps with my perspective. I don't know where you stand on religion, but I know that it is what really brings me peace with all of the uncertainty. I know that I'm being looked out for and watched over, so I feel as if everything that comes my way, good or bad, in sickness and in health, it is all part of a plan."