stretching my lungs...

So today was supposed to be an exercise day... but since Zach has had his wisdom teeth pulled just a week ago, we are postponing our after work exercise date until tomorrow. Zach instead is going back to the oral surgeon for a follow up from his surgery. He is doing really well by the way- no complications and starting to eat somewhat normally again!!!

All of this exercise stuff started a few weeks ago when I got tired of feeling sorry for myself and decided to do something about it!

Growing up I was a fairly active child... I did what I wanted and never really had any trouble... I played just as hard as any child and could keep up with the best of them! I played a few sports in school, skipped around from team to team as I was not really the dedicated athlete type... Ienjoyed sports that my high school didn't have at the time so I played intermural sports (i.e. volleyball) and really loved it! Then on to college I went (Go Lancers!), still trying to stay active and in addition to this added a heavy class load, a part time job, and freedom (meaning I had to learn how to discipline myself to keep up with classes and good grades!) On top of all of this I would get sick from time to time... slowing me down a little bit. My college years consisted of assistant coaching basketball and playing volleyball still, and then I took up running in the mornings. I loved it- it was a high and I could pace myself and have time to myself. I did some of my best thinking during my runs.

Then my health took a turn and I was out of commission for quite some time.

My lungs decided to bring me down a notch or two and remind me who's boss... I experienced major bleeding in my right lung- this of course landed me in the hospital for a few weeks. Things pretty much stopped for me at that point. There was so much damage to my lungs after this episode, it took me about a year to regain just the iron that my body lost due to all the blood loss and the fear of a repeat episode kept me grounded. Very grounded. So much so that all of my activity ceased. I went back to school and my main focus was just to graduate at that point, so I poured all of myself into my studies, my organizations and regaining my strength.

It has been this way now for just over 10 years. My pft's have slowly and steadily declined during this time. So much so that I have taken to allowing Oxygen into my house "just in case". Admittedly I push myself, because I am stubborn and don't want to be dependant on the O2, however knowing it is there if I really do need it somehow keeps me calm.

So flash forward to a few weeks ago and a conversation with my husband that through a lot of my tears and sobbing about how out of shape I am and how I miss being able to just keep up anymore... the fact that my own stair case at home is something that I dred because I know I can't just run up them or even walk slowly up them without stopping midway just to cough and hack... is very depressing to me. If any of you know my husband, you know that he is very atheletic and I am very proud of him for that. I love that about him. And I never ever want to resent him for it... Zach usually runs each morning- this is the very first thing he does. Then every other day he works out at work during lunch in thier gym. The days he doesn't work out he works out with me, but I will get to that in a moment. Zach also mountan bikes competitivly... so some evenings after work he heads out to the trail to ride and he has a race schedule on weekends as well. I am very proud of him and all that he does to stay in shape and to do the things he enjoys.

This said, I am amazed at how patient and understanding Zach is with me. He never makes me feel lazy or inadequate. He never laughs at me or gets tired of waiting for me. When I have trouble on the stairs he waits by my side. He really is my rock, and my encourager.

So our conversation, went something like this...

Me: honey, I really want to try getting some exercise on a regular basis. Zach: Oh? I thought we got exercise on a regular basis (he's smirking while he says this and has that twinkle in his eye...). Me: NOT THAT KIND OF EXERCISE! of course that is great exercise, but I sort of meant in addition to that... Zach: Oh, well good, for a minute there I thought we were going to be one of those couples that had to "schedule" that sort of exercise!

Okay, so he's sort of a nut, but I love that nut and we are still technically newlyweds!

Anyway... Zach has helped me come up with a plan for exercising and getting myself back into some sort of shape so I dont turn into a bid dumb knot on a log.

I think it is a pretty good plan too... on the days that he is not working out at the gym, he is helping me work out- sort of his cool down days. We do this twice a week, for about an hour. he has a whole routine for me- including stretching, treadmill, basic exercises, and bike riding!

The caveat to all of this exercising is this: I know that my lungs are never going to be in the shape they were in years ago, but with Zach's patience and a little help from some extra oxygen- I can still feel good about myself and know that I am trying and not just giving up to Cystic Fibrosis. There is literally nothing else wrong with my body except for my lungs and that is so frustrating to me. I have decided once again to take charge of myself and not let CF win. So what if I have to hook up to some O2! That is what it's there for! Now that I am comfortable with that, I feel like I can do anything again and that is a great feeling. I feel like Zach and I are both doing something together that we enjoy, and it is making me a better person. I love him so much for that!

I have decided that on my "off" days I will build yoga back into the schedule. I used to do this religiously to help keep my breathing under control and to expand my breathing techniques so that when my lungs would flare up I would have this weapon in my aresenal to fight back with. I think it is time to start fighting back again!

Zach has given me something to strive for again. A long life with him. This is my goal. This is why I do the things that I do each day. This is why I fight now. For him and the life we want to have together. Exercise is just one way of making sure we reach that goal together. There are many more reasons ... but I will save them for another day!

Until then, laugh hard-breathe deep- live well!

~Audrey Kay

Learning How to Sow.... Seeds that is...

So I went home with my seeds in the little zip lock packet that we were given at the end of the church service today- and to be honest I was not thrilled about the idea of having to plant them and try to make them grow, as I know from past experience I completely lack a green thumb. But the challenge had been presented and I always like a challenge… so off I went. At first the little seeds sat on my kitchen counter for a few days in their little packet. They looked so tiny and yet so intimidating b/c I knew the implication they were supposed to represent.


As Pastor Tony stood in the pulpit and announced that we were going to be given seeds to plant and tend to and watch grow- we should keep in mind the representation of the parable of the sower. (Matthew 13:3-8) "What do you make of this? A farmer planted seed. As he scattered the seed, some of it fell on the road, and birds ate it. Some fell in the gravel; it sprouted quickly but didn't put down roots, so when the sun came up it withered just as quickly. Some fell in the weeds; as it came up, it was strangled by the weeds. Some fell on good earth, and produced a harvest beyond his wildest dreams.) And here I was looking at my little seeds each day sit on the counter and thinking, I really should plant them, I really should get this project started- and then walk by with something else pressing that I needed to get done first… funny how we put things off that way. And amazing how it parallels the spiritual journey all to well that I have encountered in my life.

As Christians, we too are like plants. We should put down our roots, break up through the earth,
spread out our branches, and burst into blossom. Such a thriving condition, however, isn't always
evident in our lives. It's so easy to become bored and listless in the bland routine of our daily activities.
Often we just hang on and merely exist without moving steadily toward maturity and fruitfulness.

The day finally came when I had a few spare moments to plant the little seeds. I chose an ordinary solo cup as the container to start them out in… my mother had given me a cup full of planting soil for this purpose telling me it had minerals and vitamins included to help nourish the seeds and give them a good start. So I pushed my finger down in the middle of the cup of soil and try as I might to get those seeds into the soil they would not come out of the little packet. This should have been my first sign… resistance and fear of leaving what was already comfortable popped into my mind… After a short struggle I managed to get them planted. I felt good, they were secure and I gave the seeds a bit of water, set the solo cup in the window and hoped for the best.

As the days went by I would peek into the cup to see if I could see any growth. To my surprise,
one day I saw little green sprouts with the tiniest leaves! I smiled thinking; well maybe this
wasn’t going to be so hard after all! I knew the basics of growing a plant. They had nourishing
soil, water, sunlight and I even caught myself talking to them every once in a while! So I
continued the same thing for a few days watering when the soil was dry and keeping an ever
so brief eye on the growth of my little seeds. I was excited about my seeds and happy to be
taking care of them, nourishing them and watching them take root and grow. Something new,
new growth, new life… interesting how this parallels the very beginning of a relationship with
Christ.

Jesus used that kind of imagery in the parable of the sower. The seed is the Word of God, and the soil is our hearts. The "noble and good heart" (Lk. 8:15) receives the Word, retains it, and produces fruit.

I began to notice a day or two later that the little plants were getting really tall but the stems were not very strong. I realized that they did not have enough light, so I moved my little plants to a sunnier place. The only problem with this was my cat. She became very interested in my little plants and I had to move them again. On top of that they still had a lot of water as they were almost floating in the soil… I began to feel bad for my plants as I had somewhat gotten attached to them already. I poked a small hole in the bottom of the cup and drained a bit of the water out.

Looking back this reminds me of how the beginning of a relationship with Christ is new and exciting and we strive to take in as much as we can as fast as we can, only to realize we aren’t going about it the right way- so we adjust and try to incorporate that relationship into every aspect of our lives- only to be challenged and sometimes out right attacked by outsiders or non-Christians and we are beaten down and sometimes we lose our grip and float along in no specific direction at all.

And so as is typical I got involved in the routine of life once again and my little plants were neglected. I passed by one afternoon and noticed that there hadn’t been much change but the soil was pretty dry and flaky, so I watered them quickly without much thought. They looked like they had stunted in growth. I felt bad again… but it was short lived as I moved on to another project that I needed to do.

I think this too is representative of the Christian journey- we fall back into the things we feel most comfortable with, not paying much attention to trying to maintain the relationship we have just begun with Christ. Sure, we are reminded of it often and we try quick fixes to clear our conscience- but it is superficial and our soil dries out even quicker now… and we become stunted and even begin to ignore Christ’s call.

At such times we are at a spiritual standstill and should allow Jesus the "Sun of Righteousness" (Malachi 4:2) to warm our hearts with His love. We should plant our roots deep into the Word of God by and tend to them day and night (Psalm 1:2). Then we will be fruitful and our branches will extend outward in an ever-increasing influence and witness. They will be filled with blossoms that reflect the beauty of Gods love.

As life would have it, there came a point where I would not be home for a few days… so my little plant was going to have to “fin for itself” I thought. Then it hit me that I would have someone in the house at least once while I was gone so I asked them if they wouldn’t mind watering my little plant before they left! I thought this was a great idea and didn’t feel so bad knowing someone would tend to it at some point.

Upon my return I was settling back in at home and the little plant was honestly not the first thing on my mind… I had a lot to do- unpack, laundry, get things in order for going back to work, pick up the cat, get some groceries… all the usual things one has to do after vacation when getting back to reality! Then I saw it. The little solo cup in the windowsill and I was almost too scared to look. I got up the courage to investigate and to my demise, my worst fears were true. My little plant had not survived. It had withered and turned brown, bent and broken and most of the little tiny leaves had shriveled up and fallen off. The soil was so dry it had a grey dust on top of it… it was obvious that it had been forgotten and no one tended to it while I was away; and in its meager struggle to survive, there just wasn’t enough nourishment and care and so it had given up.

My heart cracked a bit at the thought of this tiny little living thing that I had so carelessly bustled around and tried half heartedly to fit into my over-hectic lifestyle. I was disappointed and embarrassed at my neglect. And the more I thought about it the more I didn’t want to write this little excerpt from my life. It brought on some harsh realities and parallels, but at the same time, as I am a child of God and have been for a very long time - the learning is never ending, there was a lesson here for me too… and that is why I am writing all of this.

When I sat back and thought of the challenge that was put in front of me, I realized that this- although it sounds small and insignificant- in the big picture really was a life lesson. My tiny little seedlings were much bigger than I gave them credit for and had I only paid closer attention and devoted a bit more time they would have grown strong and healthy and they would have been a proud representation of what care and concern can do, how love can grow and signify so many things in life!

I will not say that my intentions were right from the beginning but after the first signs of success I had great ambition. The ambition manifested into intentions that were hopeful and I found myself excited at the prospect! Then as time went on – life got in the way- as it often does. This is the same in our relationship with Christ. It seems to me that in the beginning we are not sure, we are slow to trust and we doubt ourselves that we will be able to live up to God. We often feel that we have to be perfect to have a relationship with Him. And we are hard on ourselves. Sometimes so much so that rather than set ourselves up for disappointment we don’t even try or we give up too easily.

And sometimes we get up enough nerve to try, something gets us excited about a relationship with Christ and once we start trying, we get excited and our good intentions turn into great ambition and we feel on top of the world! All is well and things are going the way we want them to go and God is good! We are planted! And we are even fed, and nourished and for a while the sunlight is warm and welcoming!

Then one of two things happens, we are either over fed or underfed for whatever reasons. We can end up with too much water and just float along on the surface until we eventually drown trying to keep up or we can end up with not enough water, feeling neglected and forgotten and we look for other ways to nourish that hunger. We often get distracted as well, and we place other things above our own nourishment. Our relationship with the Lord begins to suffer and we find ourselves moving further and further away.

As the Lord would have it and as He is ever present in my life, during all of this I came across a devotion shortly after my recklessness with the little seeds- and there were some questions at the end that really made an impact and helped me understand the lesson I was learning through all of this: Is the soil of your heart resistant to God and His Word, rather than receptive? Are we prepared to receive the seed of God's Word? Or are there hindrances that keep it from growing and bearing fruit? Jesus identified three kinds of thorns that spring up and choke out the seed--"the cares of this world, the deceitfulness of riches, and the desires for other things" (Mk. 4:19). Do you trust in your own way rather than in God's? Then it's time to seek the Lord in honest repentance, to sow right actions and attitudes in your life, and to grow His way. Above all, depend on His power rather than your own to make you fruitful. [Daily Bread; 1996]

Because we all fall into this rut in our lives at one time or another- I remember that I am a child of God, but yet a sinner, but also forgiven if I truly ask for repentance. My trust gets stronger each day with God, and I am still learning. I hope I never stop! I know that I am loved and nourished as I was a seed that was planted a long time ago.

If you've grown cold toward God's Word, if it's not firmly established in your life and producing fruit,
it may be that you're too concerned about this world with its riches and distractions.
Tear out those thorns! How much fruit you'll harvest depends on how well you prepare the soil.

Prayer:
Lord, I wish to be soil in which You can plant Your Word with its promise of fruit;
I want to be open to You every day, So what You have planted takes root. Amen.

Written in August 2008

from the cff website- NIH Director Briefing U.S. Senate

NIH Director Francis Collins and CF Foundation to Brief U.S. Senate on Advancing Disease Research


Cystic Fibrosis Foundation Drug Development Model Spawns More Than 30 Promising Therapies

May 19, 2010

(Bethesda, Md.) – National Institutes of Health (NIH) Director Francis S. Collins, M.D., Ph.D., will lead a briefing on Capitol Hill Thursday, May 20, to discuss how funding for medical research at the NIH can be used more quickly to create new therapies for patients and save lives.

Since being appointed director of the NIH, Collins has stressed the importance of bridging the gap between basic research discoveries and the human testing of drugs. On average, it takes 15 years to translate scientific findings into viable therapies.

Collins created an NIH program—Therapeutics for Rare and Neglected Diseases (TRND)—and cites the drug development efforts of the Cystic Fibrosis Foundation as a model: “The CF Foundation has shown the way, has lit up the path…and what’s been learned from CF can be extrapolated, generalized, to hundreds of other diseases.”

Fifty years ago, people with cystic fibrosis, a fatal genetic disease, did not live long enough to attend grade school. Today there are more than 30 CF drugs in development and median life expectancy for someone with the disease is 37 years.

WHAT:

How U.S. investments in medical research at the NIH can be leveraged to create new therapies for patients and save lives.

Accelerating development of medical solutions for chronic diseases

Highlighting lessons learned from other diseases, including CF

Bridging the “Valley of Death” between science discoveries and the creation of new drugs

WHO:

Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health and co-discoverer of the CF gene

Senators Richard J. Durbin (D-Ill.) and Richard C. Shelby (R-Ala.)

Robert J. Beall, Ph.D., President and Chief Executive Officer, Cystic Fibrosis Foundation

Moderator: Margaret Anderson, Executive Director, FasterCures / The Center for Accelerating Medical Solutions

WHEN: Thursday, May 20, 2010, 10:00 a.m. – 11:00 a.m.

WHERE: Dirksen Senate Office Building, G-11

About the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. For more information, please visit www.cff.org.

Media Contact:

Laurie Fink: (301) 841-2602; lfink@cff.org

A new inhaled antibiotic, Cayston®, recently received Food and Drug Administration (FDA) approval

Cayston was developed in collaboration with Gilead Sciences, Inc., and is the first CF drug to advance — from beginning to end — through the Cystic Fibrosis Foundation’s drug development pipeline.


Cystic fibrosis is a complex disease that requires different therapies to treat a range of problems. Cayston provides an important alternative to existing antibiotics, and may mean a shortened daily treatment regimen for some CF patients.

Since the 1980s, the Foundation has played an integral role in the development of five essential drugs for the treatment of CF. Executive Vice President for Medical Affairs Preston W. Campbell, III, M.D., talks about the Foundation’s role and what this new drug means for CF patients.

What is Cayston?


Cayston is an inhaled form of the antibiotic aztreonam lysine developed by Gilead. Because chronic lung infections are a problem for those with cystic fibrosis, antibiotics are a vital part of CF care. Antibiotics help fight infections by attacking the bacteria that cause them.

However, as bacteria are exposed to antibiotics over time, they may develop resistance. As bacteria develop resistance, the number of antibiotics that are effective in killing the bacteria decreases. Cayston provides a much-needed antibiotic alternative for cystic fibrosis patients, who often develop resistance to existing antibiotics.

Cayston also shortens treatment time for CF patients. A typical CF treatment regimen of airway clearance, inhaled medications and pancreatic enzymes may take patients up to several hours per day to complete.

Cayston is administered with a new device called the Altera® Nebulizer System that allows patients to take the medicine in less than five minutes. This is up to four times faster than other nebulized antibiotics.

Where can I learn more about Cayston?

Patients interested in learning more about Cayston should consult their doctors.

A Cayston call center, 877-7CAYSTON (877-722-9786), launched by Gilead and a subsidiary of the CF Foundation, also is available to assist with insurance verification, co-pay costs, claims support and help for those without insurance.

The approval of Cayston is a significant milestone in the Foundation’s ongoing efforts to develop new treatments for CF. Currently, more than 30 potential treatments are in the CF Foundation’s drug development pipeline — any of which could have a profound impact on the disease.

The Foundation estimates that more than a dozen Phase 3 clinical trials will be completed by 2013 — a huge success that drives our continued optimism for finding a cure.

Learn More
http://www.cff.org/aboutCFFoundation/Publications/connections/May2010/New-Drug-Approved-for-Cystic-Fibrosis.cfm

Peddal Boats at Waller Mill Park

So last weekend Zach and I decided to go out and just spend some time outdoors for a while. One of our favorite spots to go is out to Waller Mill Park in Williamsburg. It is a great little place for picnics, nature trails, fishing, canoeing or kyaking and for something quick: Peddal boats!

So in efforts to get some exercise and be out in the sunshine for a bit, we took out a peddal boat and headed down the lake! Here are some pictures of the gorgeous lake and some vegetation & wildlife (and I dont mean us!). It was a nice morning, we had a good time and it was relaxing.

For more informaiton on Waller Mill Park in Williamsburg Virginia check out the City of Williamsburg website: http://www.williamsburgva.gov/Index.aspx?page=477

Here are pictures from out mini-venture!

A Day in the Life with Cystic Fibrosis

A day in the life with cystic fibrosis…


It's about 4:40a.m. and I'm doing the first of my nebulizer medications for the day. I've been slightly slack on starting them earlier enough lately, opting for additional sleep in the mornings instead of getting my rear in gear. My medication of choice these days for a bronchodilator is Albuterol - it makes me a little jittery though, which can be a challenge if I have to do any writing at work, thank goodness I do more typing! If you've arrived at this page because you are looking for information about what a "day in the life" of someone with Cystic Fibrosis looks like - perhaps even specifically an adult with CF - then allow me to share a little corner of my world with you. My healthcare maintenance schedule is fairly rigorous even when I'm not fighting an infection, so you may find yourself experiencing a bit of information overload. Nonetheless, I hope you are able to develop a greater understanding of what people like me (CFers as we call ourselves) go through in a typical day.
Take a deep breath! Ha Ha! Here we go...
Starting the morning
I try to get in at least 8 hours of sleep each night. This week has been a little on the less than 8 hours a night side though... The first thing I do after rising is take a shower to help wake up. Then I typically begin my inhaled medications along with my ThAirapy Vest. This helps open up my airways and make it easy for me to cough out the thick mucus that would otherwise obstruct my breathing and invite nasty lung infections. Albuterol is a bronchodilator - it opens up the airways. The ThAirapy Vest is a replacement for Chest Phsiotherapy which is done manually - the vest is electric and looks much like a life jacket hooked to a machine that sends pulsating vibrations into the air filled vest that vibrates the chest walls- stimulating coughing while loosening up the mucus inside, so it is beneficial to use it with the inhaled nebulizer treatments. The vest therapy takes about 30 minutes.

Now it's 5:20am and the Albuterol is finished, so it's time to move on to the TOBI treatment. TOBI is a bit metallic in taste so my hubby usually has a glass of OJ or Cranberry juice ready for me as I do this treatment. I'm starting to cough more now, which is good. When I cough, I bring it up and out of my lungs, and I hope, bringing me out of harms way. I have a pretty speedy nebulizer/compressor system, so the treatments only takes about 15 minutes, depending on how much I have to pause to cough. Today it's looking like a 20 minute event. As the TOBI winds down, I'm getting ready to inhale one powder-form medication: Spiriva. This is a long-acting medication that should help keep my airways from closing up between now and my evening treatments. Spiriva was originally intended for patients with chronic obstructive pulmonary disease (COPD) and although that's not the same as CF, it's similar enough to warrant the use of the med. I also do a Symbicort inhaler which is something that is also used by asthmatics, which is why it has some benefit for me as a CFer too. Its 5:45am and I'm putting on make-up and clothes in effort to try to get downstairs to help my husband make some breakfast.

Breakfast
Even my selection of food preparation has to be done with CF in mind. I need close to 5,000 calories in a day for the level of energy I exert and in order to gain some weight. A high calorie, high protein diet is what I follow. Unfortunately, part of having CF means that my body does not absorb much of what I eat - a lot of it goes sliding right through, especially if it's got a lot of fat content. To combat this I take enzyme supplements to substitute for the enzymes my pancrease refuses to excrete because it is blocked by mucus. (And you thought CF just meant I had lousy lungs...ha!)

Today I plan to make toasted plain bagels topped with peanut butter and jelly and wash it down with a small glass of orange juice and a tall glass of Silk Vanilla Soy Milk mixed with Carnation Instant Breakfast. This is a whopping calorie meal and slightly higher in fat than what I usually do, but I'm being proactive today! Just to make sure I don't overdo it, I'll take 6 enzymes with the meal instead of 4 like I do with something less fatty. Additionally, I will take vitamin supplements - a multivitamin (ABDEK- specially engineered for people with CF), extra vitamin E and some zinc, - to replace what is lost to malabsorption - and Os-Cal since I have osteopenia (a precursor of osteoporosis.) I also down 500mgs Zithromax every other day which is a preventive antibiotic taken to ward off lung infections caused by Pseudomonas, and 300mgs of Ursodiol for my liver- because my liver enzymes are elevated and the ursodiol helps to digest fats. Top it off with an extra vitamin C tab and we’re done!

While breakfast was in the oven, we made our lunches for the day. My husband is very much a creature of habit, so he doesn’t vary too much in what he eats for lunch; my lunch however looks like I am feeding a small army of men. Although I enjoy food, I have come to think of it merely as fuel for my body. I have learned what foods work well to give me the energy and calories I need, and can be digested relatively easily with the enzyme supplements. I love pasta of any sort, and veggies- cooked or raw, throw in some fruit, pretzels and cheeto’s for fun and lunch is almost complete! I usually add Ensure Plus for the extra calories, cheese and crackers and yogurt.

Off to work!
I am blessed to be able to work a full time job. And so I work full-time as a records and imaging technician for the local government. Most of my job is indoors working at a desk. While I'm at work I continually strive to meet my caloric need by snacking on pretzels or other small foods. I find that pretzels are particularly easy for me to digest with a minimal number of enzymes. They are non-fat, and since they are made up of complex carbohydrates I know that they are a beneficial resource for my body. (a favorite is peanut butter filled pretzels!)Another good snack for me is nuts, but since they are higher in fat, that doesn't always work out too well, so I have to be careful. Most of the day I sip water so I stay hydrated. I allow myself a soda in the afternoons- thinking of the sugar as a little bit of a boost in energy. Lately I've also been drinking cranberry juice. It's good for my kidneys (especially with all the drugs I am putting through my system!) and it has more calories than the same amount of soda. It's rare that I find something healthy in a small package that offers decent competition.

Between 9 and 5
While I'm at work, CF doesn't really factor in too much unless I'm working on projects that put in the midst of many people all at once. Since this is not the case right now, the main thing that I do that is CF related is to wipe down my desk and other surfaces in my office with alcohol or Clorox wipes. I do this every morning to make sure that my "CF cooties" aren't sticking around and making me sick. I wipe down the desk once a day, but the phone gets a going-over two times, since that comes in contact with my face. Maybe I'm a bit of a germaphobe, but I like to feel like I have at least SOME degree of control.

Things to consider
The effects of CF can be wildly variable, and no matter how well I try to take care of myself, eat right, etc., sometimes I will fall prey to a lung infection anyway. That's just the reality. Even when I'm feeling "well", I cannot forget that I have CF. I have to pace myself so that I don't deplete my energy. There are times (quite often, in fact) when I would love to do many activities, take on multiple projects at work, and try to be Super-wife at home, but the physical reality is that I cannot do those things all the time.

I have to pick and choose. If I want to make sure I have the energy to attend church mid-week after work or something, then I have to plan ahead. If a project at work will require an early morning meeting, I have to be sure to go to bed early enough the night before. If we want to visit family or friends in the evening, or if my husband wants to take me on a date, we need to decide in advance if it would be better to go out to an early then come home for dinner, or eat first and then go out. For me, having CF means planning as much as possible, given my limitations, but still being flexible enough to accommodate those limitations as the need arises. That is the biggest mental challenge of having CF.

After work
Twice a week my husband meets me out at my Mother’s house where we complete a workout that we have tailored to benefit both he and I. We start out with stretching and warm up exercises (a few sit ups, pushups, leg lifts for me etc…) and then I hop on the treadmill for a workout that raises my heart rate and pushes me to open up my lungs and take deep breaths! (All the while I am hooked up to oxygen so that I don’t give out during the workout). After a bit on the treadmill- a few sessions of walking, increasing the speed and the incline then back down again- I hop over onto the recumbent bike for a few minutes to work my legs. After we finish with these get your heart pounding exercises, we take a walk around the block to cool down. A short visit with Mom and then we head home for the evening.

When I get home, I plan to use the energy I have left to get some housework done. I usually have an Ensure Plus just before leaving work around 5pm. This helps when I get home and take on small chores of housework like dishes, laundry, medicating and feeding our cat…I do not do any serious cleaning as we have always allowed in our budget to hire a house cleaner. She does all the “dirty” work like scrubbing the bathrooms, vacuuming and dusting, anything that involves chemicals and dust. She comes when we are not at home so I can avoid any strong cleaners that may aggravate my lungs. Doing the light chores makes me feel productive, and they are relatively low-impact, so I don't get too worn out doing them. It's also methodical enough that it helps me wind down at the end of the long day.

Even something as simple as doing the laundry must involve consideration of CF. We have to be sure to clean the vent so that fiber particles don't blow around everywhere when the dryer is running. We only use detergents and dryer sheets that are low on perfume so that my lungs once again aren't aggravated.

Dinner time
On the days we don’t work-out, I arrive home about 15-20 minutes before my husband does, which gives me a chance to have a quick snack while I sit down to unwind from my day at work. It seems like I'm always eating, which I suppose is true. Like I already said, food is fuel to me, so I'm not much good without it. If I get hungry I get crabby, and that's no fun for anyone. It also helps me get through the light chores I mentioned before.

Dinner preparations again involve careful consideration for nutritional value. A usual on our menu is stuffed baked potatoes. My potato consists of about 2 tablespoons of butter, cheddar cheese, broccoli, chicken strips and a heap of sour cream on it and I washed down my meal with cranrasberry juice. In comparison my husband has his potato sans the butter and sour cream! If need be we add a serving of apple sauce on the side. And let's not forget the enzymes...dinner is typically my largest meal of the day, and the one with the most fat content. In order to process the evening meal, I took 7 enzymes to handle it all. In addition to the enzymes, I took another multivitamin and another Os-Cal tablet.

CF doesn't sleep
After taking care of light chores, paying a few bills and cleaning up after dinner we may have some t.v. time or short game time together. Then as the late hour approaches I will head up to the bedroom for a repeat performance of all the same nebulizer treatments and inhalers that I did this morning. All of it should take about an hour, which is time we use to get relaxed, watch a late show and even attempt to add to the Sunday crossword for that week. After the treatments I'll brush my teeth and then it is lights out! If my medications do what they are supposed to and I don't cough much during the night, I'll be able to get in a good 6 or 8 hours before I start the whole process over again.