I've been waiting my whole life for today's results.
Today at my quarterly CF Center appointment, I confirmed that my health is almost certainly improving because of Orkambi. The results I've noticed are backed up by clinical data.

I weighed 119 pounds.
My FEV1 (lung function test) was 75% (100% is normal)
I coughed consistently each day and had a lot of congestion.
Coughs would often happen without my control.

I weigh 123 pounds. (I've gained 4 pounds without even trying!)
My FEV1 is 84%. (My lung function has improved 9%) (circled below)
I occasionally cough and consistently have miniscule to small amounts of congestion! (Dramatic difference)
I cough voluntarily (rather than without warning)

As if I weren't lucky enough, NO SIDE EFFECTS so far!

I feel triumph, gratitude, and joy, like I've won the lottery AND cashed it in. I will keep y'all posted as I get more results each quarter.

Orkambi is only available for 40% of CF patients. Please consider donating to the CF Foundation which has worked tirelessly since 1955 to "add more tomorrows."

Thanks for reading and sending lots of love to all,

Releasing CF Shame

Shame researcher, Brené Brown, helped me come to grips with beliefs I didn't even know I had:

When I was in 7th grade, a classmate of mine (who I think of as a bully) began speaking to me in a cartoon villain voice.

She didn't use physical force, but I had strong emotional reactions to her behavior. My reality was that I was being singled out as different and treated as though I was weak, defective, and less worthy.

The most humiliating moment I experienced was between classes when I had malabsorption (a stomach ache and indigestion). I left the bathroom stall, and in walked the one person in school who I had allowed to have the most emotional power over me.

She seized the opportunity and said in a condescending voice, her face scrunched up, suggesting, "Spraay!"

I knew then what it meant to be mortified. My face became hot, and I left the room.

Until recently, I've always felt sick thinking of this moment. A life coach helped me conclude some things about this experience:
  • It taught me to value being kind to others, even if you didn't like them. 
  • I learned empathy and am more careful with how others might emotionally react to my words.
  • People can only humiliate you if you believe you did something wrong. 
  • I played a role by making her behavior mean something about me: that I was bad, my body was bad, that I could not function properly in the world, that I didn't belong, and that I was an outsider.
I have used Byron Katie's The Work tool to question these shame-based beliefs. I then turned them around to focus on the parts of my brain that believe:

I am strong
I am enhanced
I am innately worthy
I am good
My body is good
I can function properly in the world
I belong
I am an insider

Post a moment that triggered your own feelings of shame around CF. How did you turn it around into an empowering mantra?

Thanks for reading,

We are Medicine People

If I were living in a tribal society (and had the treatments necessary to keep me alive to adulthood), I would have been selected as a shaman:

"The wounded healer is an archetype for a shamanic trail and journey. This process is important to the young shaman. S/he undergoes a type of sickness that pushes her or him to the brink of death. This happens for two reasons:
  1. The shaman crosses over to the underworld. This happens so the shaman can venture to its depths to bring back vital information for the sick, and the tribe.
  2. The shaman must become sick to understand sickness. When the shaman overcomes his or her own sickness s/he will hold the cure to heal all that suffer. This is the uncanny mark of the wounded healer.[24]" https://en.wikipedia.org/wiki/Shamanism

I remember being a small child and valuing wisdom to share to others above all other things.
At four years old I felt an urgent instinct to heal the environment. 

If you have CF, do you feel a natural instinct to heal others or use your knowledge for healing?

My Orkambi First Dose

Hi, everyone!

On Saturday, August 15, 2015, a few hours before my sister gave birth to her first child!!!!), Orkambi arrived via Fedex.

My life partner videotaped me taking my first dose.

Orkambi arrived 1 month after the prescription was called into my pharmacy by my doctor. My insurance company, Cigna, asked for a preauthorization, and even after that, Cigna denied Orkambi. A letter of medical necessity was written.

I am so grateful to have this drug. I know there is no guarantee that it will work on me, but I am happy that so many are benefitting.

I have been waiting for a medication like this all my life. Many years ago my doctor began talking about the science behind it.

When I was born, the average life expectancy (rough estimate) for someone with CF was 16 years. I am now 31. I am at a healthy weight, and my lung function FEV1 is 75%.

CF at one point took up 8 hours of my day, 7 days a week. I was trying so hard to do everything my doctor asked me to do. I was overworking, and the stress was not good for my mental health (the most important thing!) so I reduced my workload to the essentials.

I am really proud of myself. I am also proud of all the doctors, scientists, researchers, trial patients, families, fund raisers, etc. who have taken charge of something incredibly challenging.

Sending love to all!

Overwhelmed by cystic fibrosis?

My name is Claire Noelle Frost, and I have successfully overcome many of the challenges cystic fibrosis and its complications present.

After much trial and error, I have posted strategies here in hopes that others can stay healthy like I have.

On the horizon is an e-book, which will be more convenient to read. Rather than sitting in front of the computer to read, you can bring this blog with you on your mobile phone.

You can also join the CF Success Tips community on Facebook, where you can discuss topics with other CFers! See you there!

What you can accomplish here:

• Create and stick to a personalized routine to fit in all your treatments
• Make your home a clean, tidy, and peaceful oasis
• Be prepared for your CF Center visits
• Know where to find your medical paperwork
• Go to the grocery store once a week and have enough of everything
• As part of your weight gain plan put fresh, nutritious food into your body
• Get all your prescriptions taken care of once a month
• Learn to appreciate the advantages of having CF

Healing Rituals

Many people with CF have over a dozen medications, supplements, and breathing treatments to do multiple times a day. To stay on top of our health, we need a system of creating stability. You might occasionally forget to take your Tobi at night, or even brush your teeth. Here's a solution for forgetfulness:

Write down everything you need to do before you go to bed every night. Tape it up in a high-traffic area of your home.

I have created both beginners and advanced samples to give you an idea. I recommend you start small and add on as you succeed.

1. Inhale medications during chest physical therapy (Clapping, Flutter, The Vest).
2. Brush teeth and floss.
3. Lay out outfit for tomorrow (no more worrying about what to wear during morning grogginess).

Once your routine becomes second nature, try adding items from this version, customizing it to your needs:

1. Inhale medications during chest physical therapy.
2. Brush teeth and floss.
3. Lay out outfit for tomorrow.
4. Love your body (Clip your toenails, meditate, do some stretches, etc.).
5. Spend 5 minutes tidying up around the house.
6. Read something soothing.
7. Set your alarm for 8-9 hours later (Be sure to start your Evening Routine with plenty of time so you do not lose sleep. Sleep is essential for immune system function--and brain function!).
8. Refill water bottle: Bring a canteen when you leave the house to stay hydrated.
9. Water plants: Keeping plants in your room increases the amount of oxygen. Thank them with water and sunshine.

Whenever I notice that I am forgetting something repeatedly, I write it into my routine to remind me. Something about writing it down and keeping it handy makes me more likely to do it.

Wind down before bed with your Evening Ritual tonight!

1. Inhale medications during chest physical therapy.
2. Make and eat breakfast.
3. Do your dishes.
3. Brush your teeth and floss.
4. Make your bed.

Remember to customize this to fit what works for you! When you are ready, add more.

1. Drink some water (Extra water helps with mucus clearance).
2. Inhale medications during chest physical therapy.
3. Do Fitness Routine (A little bit is better than nothing!).
4. Wash nebulizers.
5. Make breakfast.
6. Check your blood sugar.
7. Record data in your Glucose Chart.
8. Eat.
9. Do your dishes.
10. Brush teeth.
11. Make your bed.
12. Get dressed: Wear something that makes you feel confident.

Designate one day a week for doing regular tasks. For example:

Mondays: Desk tasks (filing, paying bills, making calls)
Wednesdays: Appointments, grocery shopping and other errands
Fridays: Laundry (Load, Move to Drier, Fold, and Put Away)


CF patients and their caretakers must keep track of all kinds of dates. Rather than try to remember them all, I encourage you to write them down. Use whatever methods works for you.

Online calendars (often accompany email accounts). They show you daily, weekly, and monthly views. When you write an “event” onto the calendar, the program will send you an email reminder of that event at whatever date and time you select. You can also easily search for events in the search bar.

Wall calendars: Every morning when you wake up these remind you of the events you have for that day.

A calendar can be used for keeping track of:
• Doctor appointments
• Lab work appointments (some doctors ask that patients get blood tests a week before their quarterly visit)
• When to ask your doctor for more prescription refills
• When your medical supplies will arrive in the mail (that way you can arrange to be home that day in case the package arrives)
• When to start or stop your Tobi rotation
• When to stop an antibiotic
• Follow up calls you need to make with your doctor
• When to pay your bills
• Birthdays
• Time with loved ones
• Trips

Do one thing at a time

Multitasking is overrated. We are much less stressed when there are no interruptions or distractions. Relaxing in everything we do means doing one thing at a time.

Use a timer (try e.ggtimer.com )for fifteen minutes so you will be able to focus on a task until the time is up. I recommend writing down what you'll focus on while the timer is running.

Your CF Success Packet

When was the last time your nurse asked you a question, and you could not remember the answer?

When you keep a CF Success Packet, you will have the information that you need at your fingertips for all your doctor appointments.

Options for where to keep the information: (use whatever works for you)
* Mobile phone notepads
* On index cards held together by a binder clip (index card dividers to separate categories come in handy)
* 3 ring binder with pages punched and dividers to divide categories

Contents of your CF Success Packet:
1. Medical Contact Directory
2. CF Treatments List
3. Prescription Refills Reminders
4. Medical Data Calendar
5. Weekly Weigh-In Chart
6. Annual Visit Checklist
7. Vaccine Records
8. Glucose Charts
9. Q & A
10. Lab slips for pre-visit blood work

Practitioners, pharmacies, health insurance providers, reimbursement programs, and medical equipment suppliers.

List of prescriptions, supplements, and equipment.

Make sure your pharmacy has enough prescription refills left for every one of your medications and supplies. This reminds you to ask your doctor for a prescription with more refills at your next appointment.

During each appointment you must be prepared to answer questions asked by your CF Center team members. In order to do so you may need to record certain information in between CF visits.
Here are some sample questions:
• Are you on Tobi? When do/did you finish your rotation?
• Have you had any unusual symptoms? When?
• Are you on your menstrual period? When was the last day?

Instead of trying to remember all of this data on your own, I suggest you write it down between visits in a separate calendar that you reserve for your medical data. Make sure to keep the calendar in your CF Success Packet and bring it to your visits.

EASY WAY TO REMEMBER TOBI ROTATIONS: Start Tobi on the 1st day of the month and end on the 28th. Make sure your CF Team approves of this before you proceed.

The habits of weighing yourself weekly and recording the weight reminds you to keep eating frequent, nutritious meals or to include more snacks in your meal plan.

This is a list of annual tasks that occur during your annual CF visit.

Make sure you get your annual vaccines as well as keep record of all vaccines previously administered. Add to it each year.

8. Q&A
Write a list of any questions you have for your doctor before each CF appointment so that during your visit you can write down the answers below them. Also record ideas, results from tests, any changes in dosage, etc.

Patients with CFRD must keep detailed records of their glucose levels to show to their CF specialist and endocrinologist.

Take things bit by bit. You may just start by filling out the most essential parts of the chart. Select the level that works for you:

Beginner Meal Chart
• Glucose levels before meal
• 2 hours after meal
• Insulin dosage

Advanced Meal Chart
• Glucose levels before meal
• 2 hours after meal
• Insulin
• Foods eaten
• Time of meal

Whatever information you record, your doctor will be pleased to see consistent effort. In my experience the most important thing to keep track of is the blood sugar reading 2 hours after the meal. If it is high, you must increase the dosage of insulin the next time you eat that meal. If the reading is too low, you must decrease the insulin dosage.

If your doctor asks you to come in a week early for pre-visit blood work, keep the prescription in a pocket of your CF Success Packet. Bring it with you to the lab, as they cannot do the test without it!

Getting the Most Out of Your CF Visits

There are three types of visits at many CF Centers:
• Well visits
• Sick visits
• Annual visits

Well visits:
Congratulations, you have taken good care of yourself and can be rewarded with a straight forward doctor visit. There are up to four well visits each year; one of which is also the “annual visit.”

1. Medication update: Your nurse will record any changes your medications
2. Weight and height measurement
3. Blood pressure test
4. Temperature measurement
5. Pulmonary Function Test (PFT): This involves blowing into a tube to measure your breathing abilities and lung capacity. It takes about ten minutes.
6. Sputum sample collection: Usually after your PFTs you will need to cough some sputum into a cup. This will be tested by the hospital’s lab.
7. Blood test: If you have CFRD, this test must be done at every visit or a week or so before (so that there's enough time to get the results back) to check your Hemoglobin A1C. Your doctor will have the blood tested for other things when necessary.
8. Meeting with your doctor: This time allows the doctor to see how you are doing, answer questions, work on your plan of action, listen to your lungs, and write prescriptions if needed.

Sick visits:
1. Medication update
2. Weight and height measurement
3. Blood pressure test
4. Temperature measurement
5. Pulmonary Function Test (PFTs)
6. Sputum sample collection
7. X-rays
8. Any other labs that your doctor recommends
9. Blood test for CFRD patients
10. Meeting with your doctor

Annual visits:
1. Medication update
2. Weight and height measurement
3. Blood pressure test
4. Temperature measurement
5. Annual "body box" test instead of PFTs: The "body box" is like the PFTs, only done on a more high tech machine. It takes about twenty minutes.
6. Annual X-rays (if not recently done on a sick visit)
7. Annual blood test
8. Annual and less frequent vaccines
9. Biannual prescription refill update: Your doctor usually prescribes enough refills to last several months to a year. At this time they may have run out, so make sure you are updated.
10. Annual bone density test: You may need this test annually to monitor osteoporosis. This test can be scheduled at your convenience at a nearby location.
11. Annual cat scan: This tests helps doctors see a detailed picture of your lungs.

Genetic counselor:
Schedule as needed.
Arrange to meet with your CF Center's genetic counselor, the person that:
• Educates patients and families about the inheritance of CF.
• Addresses the unique emotional impact of having a child with a genetic disorder.
• For newly diagnosed adults, the genetic counselor is integral to the initial diagnostic evaluation process.
• Coordinates all aspects of DNA testing and interprets laboratory results.
• Coordinates sending DNA samples for CF gene sequencing.
• Meets with parents of children who have screened positive for CF.
• Counsels family members of our patients who inquire about carrier screening, prenatal, or pre-implantation diagnosis.
• Identifies patients who do not meet the CF Foundation Guidelines for a CF diagnosis due to incomplete mutation status and borderline sweat testing.
• Works with men and women with CF who would like to start a family of their own.

Social worker
Schedule at your annual visit.
Your social worker will provide you with resources for the financial and psychological sides of CF.

Schedule at your annual visit.
If you are having trouble getting enough calories or your food choices are affecting your blood sugar, you may want to schedule a visit with a nutritionist to get some fresh ideas. This person can help you figure out how many calories are in your current and future meal plans.


If you arrive half an hour before your scheduled appointment you will have time to get any lab work out of the way.

Pre-visit checklist:
1. Write your appointment in your calendar.
2. Get your Pre-Visit Blood Work done if you have CFRD. Bring your lab work prescriptions!
3. Make sure you have your CF Success Packet ready to go.
• Any new medications to add to your CF Treatments page?
• Will you need to ask for prescription refills?
• Do you have your Medical Data Calendar?

Reimbursement Programs

Ask your CF Center’s social worker if there is a reimbursement or “assistance” program in your state for people with CF. Usually this will not kick in until you are over twenty-one years old. You may be able to be reimbursed for your prescription co-pays, and even health insurance monthly premiums!

Easy-to-Digest Meals

The only things we can control in life are our own choices. Creating a Meal Plan for yourself enables you to incorporate healthy food choices into a routine. Remember, we all actually become what we eat!

I gained 21 pounds when I switched to easy-to-digest, unprocessed foods that mostly come from plants rather than animals. The whole grains I began eating made my blood sugar levels easier to control.

If you can be satisfied eating the same basic meals each day, you will save yourself a lot of energy, and if you have CFRD, it will be easy to anticipate how much insulin to take.

Here's what I try to include in every meal:

  • Whole grain carbohydrates: Such as rolled oats or brown rice (whole grains are best for keeping blood sugar balanced)
  • Protein: Examples include nuts, seeds, eggs, goat milk (easier for humans to absorb than cow milk). At least once a day I include lean meats (since animal fat is harder to digest).
  • Green leafy vegetables: Including kale, broccoli, and spinach.
  • Fruits: Tomatoes, goji berries, and blueberries are good low-carb options.
  • Plant fats: Olive oil and other plant oils are much easier for me to digest than animal fats like butter and cheese.
  • Iodized salt: Remember that people with CF need plenty of salt since we lose it through our sweat. 


I highly recommend Organic Food Bars® for a convenient snack to have when you can't cook or bring a meal with you.

I keep a spice jar of dates in my briefcase for when my blood sugar drops. They also make a good snack for those without CF!

Meal plans appeal to me because I do not have to follow them every day of the week. If I follow it five days a week, at least my body benefits from the best foods for me most of the time. If I eat a lot of fatty foods or sugar when I’m not cooking for myself, at least I made a habit out of eating fresh, preservative-free nutrients. These “good” foods will help my body “detox” and eliminate the chemicals that might be stored in my cells.

Assembly Line Meals

Imagine having 3 days worth of nutritious meals ready to grab from the fridge and heat in 5-10 minutes. It's easy when you spend a little time once every few days assembling the raw ingredients and precooked grains into food containers.

You will need:

  • Several 2-cup food containers (I recommend Pyrex and Glasslock). The number depends on how many meals you want to assemble. I usually do 9 containers so that I have 3 days worth of meals ready to heat up.

  • Plenty of items from as many of the food groups as recommended by your CF Team (vegetables, fruit, grains, legumes, nuts, seeds, herbs, spices, oils, etc)

1. Make a big batch of anything that takes a while to cook, such as (brown) rice, quinoa, (Spelt) pasta, and (sweet) potatoes.

2. If you have CFRD, use a measuring cup to measure the amount of carbohydrates you will take insulin with. Distribute the same portion size for each food group into each container.

3. Put them in the fridge.

4. When you are ready to eat, just take one container, add a little water to the bottom of a steamer, and steam for a few minutes until tender!

Since I have CFRD, I need to use the same portion size of carbohydrates each meal so I know how much insulin to take; so I  food storage to help me measure portion size to gain weight.

Fresh Food First

NOTE: Contact your CF Center nutritionist first before creating your meal plan. These are simply my experiences.

Growing up, I struggled to gain weight while doing what my doctors advised: Eating foods with the highest calories and amounts of fat, protein, and sodium; however, I believe we must be careful consumers by including the freshest foods we can afford. 

Putting high-quality foods into our bodies gives us the most nutrition to work with. For the most part, we have choices in what we put in our bellies. When you go shopping, start in the produce aisle!

In high school I began craving vegetables after having grown up on primarily meat and potatoes. I listened to and obeyed my body’s demands.
Here are some vegetables you may consider including in your Meal Plan.
• Broccoli
• Asparagus
• Spinach (raw or cooked)
• Lettuce
• Cucumbers
• Zucchini (green squash)
• Celery
• Squash
• Eggplant
• Bell peppers

Over the years I have come a long way, from eating a large percentage of processed fast foods to these highly nutritious whole foods:

  • Soup:
    • Water
    • Yams or sweet potatoes
    • Onions
    • Garlic
    • Carrot medallions
    • Your favorite herbs
    • Salt

  • Brown rice 
Lean meat of choice with:
  • Shredded kale
  • Pumpkin seeds
  • Herbs to taste
  • Sea salt
  • Olive oil
Note: Quinoa is low carb and made me LOSE weight rapidly. Brown rice and whole wheat pastas are much better for weight gain. 

Spelt or whole grain pasta (I highly recommend Vita Spelt Rotini) with:
  • Chopped broccoli
  • Tomatoes drizzled in lemon juice
  • Pine nuts
  • Toasted wheat germ sprinkled on top or almond flour (instead of Parmesan cheese)
  • Herbs
  • Celtic or Himalayan sea salt

Grocery Inventory

No more forgetting what you need at the grocery store:

1. Print this out.
2. Put it in a plastic sheet protector.
3. Use a dry erase marker to highlight or circle items you are out of.
4. Bring to the store and cross off items you pick up.
5. Reuse! (Saves paper, time, and brain power)

Grapes, red

Spinach, baby
Water chestnuts
Green onions

Green beans
Garbanzo beans (aka Chickpeas)
Black beans
Peanuts (keep frozen)

Pine Nuts
Sunflower Seeds

Pitted olives
Organic Food bars
Hummus, plain

Powdered goat milk (goat milk cells are close in size as human breast milk, making it easier to absorb than cow milk)

Almond milk
Rice milk
Oat milk
Soy milk

Oatmeal, rolled
Sweet potatoes

Spelt pasta
Buckwheat pasta

Extra Virgin Olive Oil

Pear Juice

CF Related Diabetes


According to David M. Orenstein’s Cystic Fibrosis: A Guide for Patient and Family, about 20% of CF patients have developed CFRD by the age of thirty.

If you have CFRD you may have more trouble gaining weight than before you contracted it.
CFRD inhibits the pancreas from secreting enough insulin. Insulin helps your body use the energy (in sugar form) in your bloodstream after digestion. When your pancreas produces an insufficient amount, the sugar in the blood gets “backed up.” Your glucose reading is higher than 120. When it reaches 180 and above, Luckily your body naturally responds to high blood sugar by flushing the glucose into the bladder, where it leaves in the urine. These calories get wasted.
Once CFRD is diagnosed, we can take insulin to prevent the sugar in your blood from getting lost. That way, you will be able to get more of the calories you eat.

If you have recently discovered you have developed CFRD you may feel angry, sad, afraid, guilty, overwhelmed, or even relieved (for example, if you spent a long time searching for the cause of the symptoms you had). Take some time to process all of these feelings. Applaud yourself for all of the efforts you have made in the past to treat your CF, and know that you will be ready for the next challenge in your life, treating your CFRD.

METHODS THAT DO NOT WORK (I tried them all!)
The Whatever I Want Diet
After I was diagnosed with CFRD my specialist at the time encouraged me to continue eating the high-fat CF diet, a.k.a., the “Whatever I Want” Diet. He believed that I could “cover” the sugary soft drinks and the sweet and fattening desserts with insulin.
This method of managing my blood sugars did not prove effective, as my glucose levels would spike up and drop way down low even if I took insulin with these types of foods. When I cut out the sugar dramatically (except for on special occasions), I noticed much more balanced glucose readings.

The Low-Carb Diet
You may think that in order to control your blood sugars you can eat a diet with few carbs and mostly protein and fat. I found this method to be unsuccessful when I tried it. I hated taking insulin injections, and thought I could minimize taking them if I stopped eating carbohydrate foods like rice, pasta, pizza, bread, etc.
Instead, I ate hamburgers, steak, and Caesar salads. Soon I realized that my blood sugars were low a lot and I was losing weight! I learned in a nutrition book that everyone needs carbohydrates because every cell in your body uses them for energy. Carbs entirely power your brain!
People with CF, even when we take our enzymes, have a much tougher time digesting fats and proteins such as meat, eggs, dairy, and butter. If our diet consists of mostly these products, much less of what we eat will be digested. Carbs are much easier to digest for CF patients, so it makes sense that if we eat healthy amounts of carbs and cover it with insulin, we will be able to gain weight.

The Processed Grain Diet
As soon as my doctor told me that I needed to eat carbs to gain weight, I decided that I had better eat larger portions of carbs if I wanted to gain weight. So I began filling my plate with white rice, pasta, pizza, and bread. I did gain some weight, but even with insulin my blood sugars were still very high after meals. The carbs I was eating were processed “white” grains. Most wheat products nowadays are first stripped of their fiber and “enriched” with the lost nutrients. The lack of fiber, however, keeps our bodies from gaining long-term energy from them. It takes so little time to break the food down in our digestive systems, our blood sugars spike and then drop soon after.

I began seeing an endocrinologist after I switched to a doctor that specializes in adults with CF. Endocrinologists treat hormonal problems, including diabetes, which is the defective secretion of the hormone, insulin. I was glad I found a doctor that had experience treating other patients with CFRD. He taught me what I know about carbohydrates.

The Complex Carb Diet
According to my doctor, our bodies can only use so much insulin to cover the carbs before thirty minutes go by and it has left the system. For example, if I eat a frozen sausage biscuit with white flour for breakfast, and took a lot of insulin with it, my blood sugar may still go up to 250 at my post meal glucose check. Then, because the carbs did not have lasting energy that comes with fiber, my blood sugar will drop way low to 60 an hour later.
Because of CFRD, my body has an easier time dealing with “complex-carbs” than the more “starchy” carbs.
Some complex-carb foods to include in your regular diet:
• Whole wheat bread
• Brown rice
• Sweet potatoes
• Oatmeal
• Corn

Complex-carbs take longer to break down than simpler carbs. The longer it takes to break down, the less likely your blood sugars are going to “spike” up. Complex-carbs are the middle ground between pure sugar and fat. Your body breaks down sugar very fast, fats very slowly, and complex-carbs just right. Complex carbohydrates have more fiber and improve your digestion. Eating them will be more likely to stabilize your glucose, keep your energy at an even level, and keep you satisfied longer after your meal.
Keep in mind that complex carbs you eat do not have to consist of only rice, oatmeal, sweet potatoes, and brown rice pasta, as vegetables also contain them. Use this list as inspiration for what to include in your regular diet:

Spinach Whole Barley Grapefruit
Turnip Greens Buckwheat Apples
Lettuce Buckwheat bread Prunes
Water Cress Oat bran bread Apricots, Dried
Zucchini Oatmeal Pears
Asparagus Oat bran cereal Plums
Artichokes Muesli Strawberries
Okra Wild rice Oranges
Cabbage Brown rice Yams
Celery Multi-grain bread Carrots
Cucumbers Whole meal spelt bread Potatoes
Dill Pickles Pinto beans Soybeans
Radishes Split peas Lentils
Broccoli Navy beans Garbanzo beans
Brussels Sprouts Tomatoes Kidney beans
Eggplant Cauliflower Onions

Despite their sweet taste simple carbohydrates have many disadvantages for everyone, whether or not you have CF or CFRD. Simple carbs may alter one’s mood, lead to compulsive eating, and cause glucose “spikes.” In addition, a high consumption of sugar can lead to uncomfortable withdrawal symptoms when you finally decide to improve your diet and skip the sweets.
Because they take less time to break down, they quickly move to the blood stream, raising your glucose and giving you a “sugar high” and quickly exit through your bladder, leaving you feeling lethargic. Examples of foods containing simple carbs:

Table sugar, (High fructose) corn syrup
Candy, cake
Fruit juice
Bread, baked goods, and pasta made with white flour
Soft drinks, such as Coke®, Pepsi®, and Mountain Dew®
Most packaged cereals

If you have CF you may have noticed certain annoying double-edged swords:
• Antibiotics to treat lung infections may curb your appetite and give you diarrhea
• Eating fattening cow dairy products and wheat may make your body produce more mucus, irritating your throat and intestines

If you have CFRD you may have noticed certain obstacles that seem impossible to beat:
• Your favorite high-fat, sugary foods make glucose levels difficult to control
• A high-fat, high-protein, but low-carb diet will NOT put on weight
• More than three meals a day means 8 or more blood sugar “sticks” (which interrupt daily activities)

When I learned the previous information on carbohydrates I realized that I would no longer be able to regularly eat fattening foods that I had relied upon to gain weight before the CFRD diagnosis:
• Soft drinks and juice
• Milky Way chocolate bars
• Dessert cake

I had been told by my doctors to eat things with sugar because sugar adds calories. This change challenged me because for the first time in my life I had dietary restrictions. Most CF patients enjoy being able to eat whatever they want, and grow up hearing how lucky we are from people that struggle to maintain a healthy weight.
I have coped with the restrictions by treating myself occasionally to my favorite foods I should avoid, and by realizing that I deserve to eat primarily healthy foods.

Whenever a doctor tells me to “avoid” a certain food but does not totally restrict a food, I use the following system: When I buy my weekly groceries I do not buy any of the foods I should avoid.
I eat at home and make myself meals during the majority of the week; however, I reserve one or two days of the week to eat out. During this time I allow myself to eat my favorite foods in moderation (even if they are not on my meal plan).
This arrangement allows me not to feel deprived and full of self-pity. I feel that designating yourself a “Splurge Day” helps with the transition period in forming lifestyle changes. Completely denying yourself food that you enjoyed eating previously does not seem healthy to me. I do not, however, condone “binge” eating or drinking of unhealthy foods or beverages, as this self-destructive type of behavior does you no good.

A Complex-Carb Diet can be difficult to adjust to. Almost every food establishment you pass lacks the complex-carb foods that you need to maintain a healthy glucose level. Think about what carb food items most restaurants offer: French fries, pasta, pitas, white rice, hamburger and hotdog buns, and pizza.
Some Asian restaurants offer brown rice, but it can be hard to find a place that makes sweet potatoes. You may find places that serve whole-wheat pasta, buns, rolls, crackers, pizza, etc, but they are not ubiquitous.

Because gaining weight with CFRD requires eating carbs, you must cover them with insulin. Try to visualize the insulin as a positive tool that will help you gain weight. I know it may hurt, and it may bleed, but you probably cannot gain much weight anymore without insulin. I make sure that every meal I eat has carbs in it (if not complex-carbs), which means that I take insulin with every meal (unless my blood sugar was low and I needed something to bring it back up).

Before you had CFRD you probably could keep a bottle of enzymes in your purse or a pillbox in your pocket. Now that you have CFRD you must keep an assortment of medical tools with you as well as medications.

Diabetes Bag contents:
• Glucometer
• Lancing device
• Lancets in a drawstring pouch
• Test strips
• Insulin delivery device
• Insulin vials
• Enzyme bottle
• Pill box for other oral medications
• A handkerchief for wiping up blood
• My Glucose Chart
• Band-aids
• A small Low Glucose Sweet

People with CFRD inject ourselves with insulin nearly every time we eat. These injections bleed a lot for me, and in order to save my clothes from bloodstains I use band-aids. I buy the large ones that cover a lot of surface area and keep them on my injection sites, changing them each day. The kind I buy has antibiotic jelly on them for extra sanitation.
People with CFRD cannot go into a diabetic coma for high blood sugar, but they can for low blood sugar. You should prevent such an emergency by regularly monitoring your glucose (at the very minimum before meals), and carry an emergency “Low Glucose Sweet.” I keep a little box of raisins in my Diabetes Bag. They have lots of fructose, but are dried so they do not spoil quickly. My doctor prefers me to use dried fruit over chocolate bars, as chocolate bars require enzymes, and they have refined sugar rather than natural fructose. If your blood sugar drops to the point that you are weak, you need to get a hold of some fruit juice as soon as you can.

If you have CFRD you may be a little frustrated with the glucose booklets that your endocrinologist gives you. This is normal, because you have much more than blood sugars to be aware of. You may need to keep track of how many calories you take in, what kind of food you are eating, and how many times a day you are eating! My doctors want much more data than the booklets ask for. See the Glucose Chart in the section: Managing Paperwork.
If you make your own chart, you may want to make a table on Microsoft Word or another word processor. There are five rows and eight columns. Make a table for each day of the week and keep it all on one page. To help you know where to write your data, make sure that the borders of the table are turned on.
If you eat more often, add more meals. The "Time Before Meal" column refers to what my glucose reading was, and I follow up two hours later under "2 Hrs. Later."
The Insulin column is for the amount of insulin I took. I use Humolog, so I write, "10H" if I took ten units of Humolog, and "10L" if I took ten units of Lantus.
I use an insulin delivery device, and I have to keep track of how many injections I use so that I know when to change the cartridge. That is what the "Inj #" column is for.
Food at Meal shows my doctors what I am eating, and then I write the calories (I'm still learning how to calorie-count).
Good luck with your own chart. It will help you always have information for your doctors. Also, you will constantly be able to know why you are gaining or losing weight, by knowing whether your blood sugars are in control or that you are getting enough calories.

I can honestly contribute much of the success of my treatment of my CFRD to checking my glucose two hours after every meal. This helps me know if the food I just ate got absorbed (after being digested with my enzymes) or not, and also if I took the appropriate amount of insulin.

In order to remember to check my glucose two hours after each meal I set the alarm clock on my cell phone. Some watches have this alarm clock feature, and I highly recommend purchasing such a watch if you do not use a cell phone.

Because I check my glucose twice for every meal, I struggle with squeezing in snacks. Three meals a day can sometimes be difficult with my busy lifestyle, but when I prioritize them and keep track of the time going by each day, they make the cut. However, snacks require an extra glucose check, which means I end up having to eat something every two hours.
I have been able to eat one snack each day between lunch and dinner. I eat an Organic Food Bar (chocolate chip), which has no added sugar (only the sweetness from dates). They taste wonderful and cost about $2.00 at your local health food store or Vitamin Shop. You can carry them with you as a low glucose remedy as long as you have enzymes handy. They have 310 calories, 15 grams of fat, 12 grams of carbs, and 7 grams of fiber. Experiment with different food bars and portable snacks so you can get in the maximum number of calories.

The challenges presented with CFRD dietary restrictions have blessed me with better health. Because of my diabetes I eat more “100% Food.” I avoid processed foods, which spike my glucose, and I have learned through years of learning about nutrition that a proper diet excludes preservatives. See more in the section, Drug-Free Healing.

Self-Love, Self-Care

All of the energy you spend taking care of yourself should not be viewed as frivolous. You are investing in your mind/body well being. I call the rewards you get in return your “Self Care Salary.” Remember, in order to help others, you must first take care of YOU. Prioritize your needs.

• Give yourself a manicure and pedicure
• Put on a clay face mask
• Apply lotion to your feet and hands and rub it in
• Take an oatmeal bath
• Light some incense, a candle, or essential oil infuser
• Put a small pillow over your eyes

• Write in a journal
• Write a friend a letter
• Write a letter to yourself about how proud you are of your accomplishments (no matter how small they seem)

You deserve a vacation. Even if it's just a weekend, be sure to remember:


• Albuterol®
• Flovent®
• Flonase®
• Tobi®
• Pulmozyme®
• Hypertonic Saline
• Icepack
• Ziplock bag or small cooler
• Nebulizer
• Compressor
• Tubing
• Chest physical therapy device
• Enzymes
• Adeks®
• Echinacea
• Acidophilus
• Calcium
• Zithromax and other antibiotics
• Lancing device
• Lancets
• Glucometer
• Test strips
• Insulin delivery device
• Lantus®
• Humolog®
• Antibacterial gel
• Extra Glucose Charts
• Snack (nuts, seeds)
• Water bottle

Dealing with Depression

6:49 PM
Q: “I struggle with depression over this illness. How do you handle it?” –Anonymous

A: Dear Anonymous,
Thank you for your message. It means a lot to me that people out there see my website and may benefit from it. Also, I am proud of you for being able to admit that you deal with depression.

First of all, if you are dealing with an emergency, such as acute, suicidal thoughts, call your local emergency services (such as 911 in the U.S.). For less serious depression that you are still concerned about, please seek help from a licensed mental health professional. You may get more immediate relief by contacting a hotline such as the Samaritans. I once worked for a crisis hot-line, myself!

What triggers my own sad feelings is when I have to make lots of phone calls about health insurance, taxes, or other bureaucracy, and I'm not sure what exactly to do. Another thing is when my family worries about me. What triggers your feelings? Remember, negative emotions in of themselves, cannot harm you. They are like the weather. You can own them and let them pass. I find it helpful to express them in a healthy, nondestructive way (writing, drawing, listening to music, talking to someone).

I experience negative emotions just like anyone else, but those moments seem to occur less and less when I feel in control of my health. I pretend that I am getting paid full-time to stay healthy, because in a sense I receive energy (the same thing money is, really) when I improve my lung function, my digestion, my glucose balance, etc.

Sometimes I catch myself being overly critical in my thoughts. This self-inflicted verbal abuse is  self-sabotaging. I try to become conscious of what I say to myself so that I can forgive myself for making mistakes as well as for the harm I may have done to my sense of self-worth.
Many people do not love themselves enough to have the mindset needed to achieve their goals. We all need to give ourselves more loving care. Remember: this is the only self you get in this lifetime. Retrain your Inner Critic to be patient and gentle with your Inner Child.

I cannot emphasize this tool enough. You may forget something you had planned to do, or you may run into other obstacles in your life that appear to be a result of your actions. However, your attitude has so much of an impact on your health, and no good comes from dwelling excessively on things you cannot change.

This is why I want everyone who reads my book and my blog to write down their morning and evening routines. You can start with a very basic treatment routine, and gradually add more things. For example, I include pampering such as gazing at my windowsill vegetable farm each morning. I didn't always make time for this, because I was always in a rush in the mornings. Feeling at peace before your day prevents stress from hampering your immune system.

Ask yourself, are you moving your body enough? Are you eating healthy food? Try watching dance lessons on YouTube if you hate traditional fitness programs at the gym. I have a weekly Saturday danceathon (aka dancercise) where I get my heartrate up for at least 20 minutes. The way you feel during and after a little time moving may minimize your overall dark feelings.

If you think about it, slouching forward doesn't allow the nerves attached to your spine to function as efficiently as when you sit up straight. It makes sense that sitting up straight, which people do when they feel energetic and confident, can influence your emotional health. Even when you feel really sad, try sitting up straight and see if it doesn't make you feel a little prouder and stronger.

Eating 100% food (that means no preservatives, pesticides, or artificial ingredients) and enough protein may help your mood and empower you to treat your body as sacred.

Think about how cystic fibrosis has affected your life. Would you be the same person? Would you have the same compassion for other people with special needs, or for people who are left out for other reasons? Challenges give us perspective that others do not have.

Volunteering is a classic way to deal with depression. Community service gives you:
New surroundings which can energize you; an opportunity to empathize with others; a higher purpose; small successes to build your confidence. You can give an elder neighbor a ride to the park or join Doctors without Borders. The spectrum of your service depends on what works for your lifestyle.

A former roommate getting her PhD in clinical Psychology recommended a workbook called Mind Over Mood which asks the reader to write in their thoughts and feelings about different things. It then asks one to consider the positive and negative sides of these entries as well as considering how they are logical or illogical. One's own participation in this book gives a more balanced perspective on one's situation.

In the future you may find yourself noticing things that make your life harder (things you can control): not planning ahead, not preparing, procrastinating, accepting requests that cause you to sacrifice sleep, meals. Train yourself to stop and consider. Is this a self-loving action? Could I be a little nicer to myself and prevent future stress? Remember: The only thing you can control is your own behavior.

Everything on this website and in my book has helped me battle moments of depression as well as CF (that's why I created them). What I want to show other people with CF is that challenges are not innately destructive unless you give up. If you truly appreciate the gift that a health challenge is, you can succeed at living a powerful life.

My CF helps me use my gifts (being openly expressive and organizing) to help others like yourself. I have decided to include CF Success Coaching as a career. I want to excel at it. I have come to love CF, and I choose to take responsibility for it.

Are You a Healer?

This quote speaks to me and many other people with health-related challenges:
“Some people are challenged with physical ailments that send them on a long search to heal themselves. Only later do they realize that what seemed like pure adversity at the time really offered precisely the education they needed to become a resource for others, and to live out their life purpose as healers. Sometimes our suffering enables us to understand the suffering of others. Along with pain of illness or injuries comes the blessing of compassion. I’ve always found a gift hidden in every adversity. That doesn’t make adversity any easier; it makes it more meaningful.”
--Dan Millman, No Ordinary Moments

I believe that we all have healing abilities. We can help people heal by being kind, listening patiently, and by sharing wisdom.