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.

Life Lessons I've Learned (so far) From Growing Older with CF

For a while I’ve been going through a period I’ve never really gone through before, I was really getting down about living with cystic fibrosis and the way my life was different from everyone else’s… or so it seemed.


I’ve been way too focused on all the things I *could* be doing, I’m not able to do, and how I kept thinking: I’m much more dependent now than independent, and I don’t know when that happened. Due to a recent Sunday School lesson at church a few weeks ago, I now have the feeling that I am out of balance, and I’ve never felt this way before.

So I’ve made the conscious decision to get that positive attitude back about my life, and I began thinking about the life lessons I’m learning during this process.

1. Don’t try to do everything everyone else does.


Whenever I am sick- on antibiotics or in the hospital, I have many people around me to help with anything I need, from a book that I left upstairs to retrieving the mail from the box down the street or simply fixing a meal. Because I’m a stubborn strong-willed spirit, after a few days of this I decide to try to do for myself as much as I can. And I quickly run into issues – Yes, I could do all of these things with a lot of extra effort, but would it be worth it if I relapsed or got run down again because of it? Nope, definitely not.

The takeaway here is in thinking of all of the obligations and responsibilities we try to manage on a regular basis, and deciding how much is too much. When we try to do too much on our own, it’s easy to relapse. And this could be avoided, we have choices, and we need to best figure out what our ‘management capacity’ is.

2. Balance is everything.

I run out of oxygen quickly, so I’ve become a much better planner and organizer. I’ve learned to organize my tasks and maximize the most with the shortest routes to keep myself balanced (ex. listing everything I need to have with me before I head down the stairs in the mornings so that I don’t have to turn around and go all the way back up a few minutes later- gathering all things on the list and then heading down). But this only works if I actually remember everything and it makes it on the list. And if I do happen to forget something, I have the challenge of overcoming my own pride and humbly asking my wonderfully devoted husband to do me a favor and go back upstairs for whatever it is I forgot to grab…

Lesson Learned: It’s very important to balance the physical, mental, and spiritual sides of ourselves. Which leads us to balance our financial needs with those of our heart, to balance the practical with our big dreams, to balance work and play and family Without proper balance, we are in danger of running out of oxygen, and learning to moderate and find a good middle ground with our lifestyle has a huge positive effect on our lives.

3. Asking for help is healthy.

According to my astrological sign-Libra-something I’ve never put much stock into, I’m like the scales of old trying to "balance”. I respond to situations with grace as I attempt to put others at ease. The greatest balancing act is between self and others, and it is here that many Libras focus their energy. Here, in the realm of interpersonal relationships, I should be a champion; because Libra’s know how to be the charming host or hostess and Libra’s can sense what others want before they ask for it. A Libra also tends to make the needs of others a higher priority than their own. All this and yet…I still have a hard time asking for help, even without being in a sick phase. Now that I can’t do as much as I would like all the time, I have to ask for help (or get scolded when I don’t ask, but instead try to do it myself), and I’m realizing how crucial it is that I speak my needs and ask for some help with whatever I can’t do at the time. According to Zodiac Central online: A Libra’s Greatest Strength: Grace and charm when helping others, A Libra’s Possible Weakness: Forgetting to take care of your own needs. Who knew that the stars and their alignment in the universe could have so much to say about my little corner of the world!

I think I have come to the conclusion that even the healthiest and most oxygen infused aren’t expected to do everything in life by themselves. The wonderful thing about community is the reliance that comes as a natural result and the bond of helping those we care about, with no expectation of a reward. Asking for help is not a weakness, it is the understanding of our own limits and accepting the bond we share with those around us willing to help.

4. Sometimes you just need to stop.

Because when I am sick, on antibiotics or in the hospital from time to time… I’m propped up in bed most of the day exhausted before I even start, I have to take extra effort to get out and get around just to get my blood pumping and to feel the sun and wind on my face. So, I usually take a walk enlisting anyone who is visiting to come with me, and we head out of the room down the hall or outside around the block. I do fairly well until about three quarters of the way, at which point I begin breathing hard, I have to lean on something, count myself down from going into what could be mistaken for an asthmatic attack, and then I find myself wondering just what the crap am I trying to prove here? So I just stop, right there in the middle of the hall or on the side of the road, and let my heart slow down and get my breath back, and apologize to the family or friend that I had to hold them up. Their response is usually that I should do what I need to do, and not to worry about them.

The lesson here is that when we are not able to keep up, or we need to recharge, or we think we need to change direction in our lives, then we really just need to stop what we’re doing. The world will still keep spinning, the sun will rise and set all by itself, and our loved ones will support us without a second thought while we catch our breath. As a wiser person than me once said, “You can resign as the general manager of the universe.”

5. A molehill can really be a mountain.

Imagine taking a trip to the grocery store. You arrive to the parking lot and begin getting nervous as you drive around endlessly because you do not see any free spaces near the door of the store. You get anxious trying to figure out how many steps it is going to take you to get from your parking spot in the middle of the lot to the store and if there is anywhere along the way to stop and rest, lean or cough without being noticed or questioned. When I plan a trip to any store it has to be worth my while, worth my energy and most times out of dire necessity, that is unless there is someone with me to either drop me at the door or run in for me. I resolved myself a few years back to applying for a handicap parking placard. This would put me close to the door of any store for sure, and I could remove that little blue and white placard when not in use to save what little bit of pride I felt I was losing (thus not getting a permanent handicap license plate for my vehicle). For anyone else, that little trip to the store would not cause any sort of issue, but for me, it is a major obstacle.

While we’re often cautioned to not make a mountain out of a molehill, sometimes the tiniest things really can throw us off. We would be well advised to look twice before committing to anything that might have the potential to upset our balance, based on our personal situation. We really aren’t all the same – we’ve all got different strong points and weaknesses that it pays to acknowledge and adjust for in the way we approach life.