Year in Review: 2014

2014 was a GREAT year for me! I'm thankful for such great family members and friends who supported me in achieving my goals. Many of you motivated me, laughed with me, laughed AT me, and even cried with me. My 2014 resolutions were to: be healthy and run a half marathon. I'm happy to say I did those things and more. 

In April, I was featured on Club CF's website as a 20+ year old thriving despite having a life threatening medical condition. Club CF does a great job at promoting awareness but also giving younger CF'ers a look at all of the potential they hold- if you push yourself. 

In May, I ran the Great Strides 5K in Addison, TX. The weather was favorable, I had a great team, and successfully ran it in it's entirety in 38 minutes. 

I also participated in the Dallas Carry the Load with my brother, an OIF veteran. We walked 13 miles in the rain with 25lb rucksacks. During this time, we talked about his military experiences, gossiped, laughed, and bonded just as siblings should. 

In late July I purchased my Specialized Ruby Elite in preparation for the CFF Cycle For Life. For the next two and a half months, I called the CF Foundation regularly. I visited Richardson Bike Mart religiously. I rode my bike consistently. I pushed myself. It was hot, I was tired. It was windy, I was hungry. It was getting dark, I was aching. 

I also received sponsorships from Bolthouse Farms and Smith Optics. Bolthouse Farms donated to the CFF and if it weren't for their support, I wouldn't have been able to participate. Smith Optics provided me with gear that was discounted at an amazing rate and allowed me to focus on training instead of purchasing gear. So, big thanks to those two companies and their amazing reps!

In August, I was nominated and recognized by the More Than Just Me Foundation for my involvement in the CF community.

In September, I loaded up my bike and headed to Highland Village. I was intimidated- elite cyclists, triathletes, ironman champions, and then there was me. The ONLY person with Cystic Fibrosis that participated. No pressure...Rest stops every few miles were loaded with "fuel" (as the cool cyclists call it!), water, gatorade, pickle juice, bananas, jerky, granola bars. Port-a-johns that were awaiting my arrival, volunteers that were freezing but ecstatic. Did I mention this day was abnormally cold, and extremely windy? Oh, and the mountains hills on the course. There were a lot of those.  I had an amazing group of people with me, the turtles as they called themselves. I crossed the finish line and immediately broke down. I couldn't believe I rode my bike for 60 miles...4 hours straight! I hugged my family members and best friend, and consumed as many calories as I could. It wasn't the cycling that hurt or that made me want to give up. It was my mind. I wasn't allowed to exercise when I was little...and there I was. I wasn't supposed to live this long or be this healthy. I wanted to give up because mentally, I wasn't prepared. I was afraid, intimidated, and overwhelmed. I kept pedaling because with every pedal, I was defying odds.

It was on this day that I truly realized my diagnosis doesn't determine my destiny, I do. 

In December, I ran the Dallas Metro PCS half marathon and completed 13.1 miles in under 3 hours. My body hurt, but there was no giving up. 

It was a great year and I'm so thankful for those of you who celebrated it with me. Your support is what keeps me going when things get tough.

Here's to making 2015 bigger and better!

Love,
Rebecca

Shop and Support

I use Amazon.com for a majority of my purchases. From bakeware to back to school, I'm frequently comparing prices and checking out.

Now you can shop and support the CF Foundation. Go to smile.amazon.com instead of amazon.com. When you enter through the new gateway, you will be prompted to select an organization that .5% of your purchase will go to. You can also search "Cystic Fibrosis Foundation" and select it that way. The Amazon Smile page is the exact same site- same prices, selection, etc. The only exception is that eligible products are marked on the details page.

The Cystic Fibrosis Foundation doesn't receive government funding, so this is an excellent way to increase funds and awareness.

More info here. 

Shop on!

Rebecca

Bones

Normal bone density- left, 
Osteoporosis bone density- right

People with Cystic Fibrosis are prone to developing osteoporosis and osteopenia. Bones play a variety of roles in the body such as providing structure, protecting organs, storing calcium, and more. Osteoporosis is a systemic skeletal disease characterized by low bone mass and deterioration of bone tissue that results in an increase in bone fragility and susceptibility to fracture. Minerals that build strong bones are calcium, phosphorus, fluoride, and magnesium. Osteopenia develops when the bones have insufficient amounts of these minerals. Bones become brittle and weak.

There are a number of factors that can affect bone health

• calcium deficiency- diminishes bone density, increases risk of fractures
• physical activity- inactive people have an increased risk of osteoporosis
• certain medications- prednisone,  SSRIs, anti-seizure medications 
• alcohol and tobacco use- alcohol can interfere with the body's ability to absorb calcium

In CF, these bone diseases can happen at any age and as you get older, the risk increases. 

The malabsorption caused by CF affects the amount of vitamins and mineral the body is able to absorb. Vitamin D is a fat soluble vitamin and is vital to bone health in addition to calcium. It is important to take the correct amount of enzymes and maintain a nutritious diet to ensure healthy bones. 

Bone Density Scan- the most common and accurate way uses a dual-energy x-ray absorptiometry (DXA or DEXA) scan. DXA uses low-dose x-rays. (a chest x-ray has more radiation)

2 types of DXA 

• Central DXA- lie on a soft table and the scanner passes over your lower spine and hip. This scan is the best test to predict your risk of fractures.
• Peripheral DXA (p-DXA)- The smaller machines measure the bone density of smaller bones like wrists, fingers, legs.

Recommended Dietary Allowances
(RDAs) for Calcium

a few foods high in calcium *values are approximate and vary based off of flavor, freshness, serving size, etc

• 1 c whole milk 290 mg
• 1/2 c almonds 190 mg
• 1 c spinach 240 mg
• 6 oz calcium fortified orange juice 261 mg
• 3 oz canned salmon 181 mg
• 1 c plain yogurt 415 mg

*It is important that you discuss any changes in your vitamin regimen, dosage, and frequency with your doctor and/or dietitian. Blood work ordered by your physician and help determine whether or not you are deficient in vitamins.

More Info

Disability Resources

Disability resource look up by state

The American Disabilities Act online 

To file discrimination charges against an employer EEOC

Cystic Fibrosis Patient Assistance Foundation

For more information about government benefits contact CFLegal@sufianpassamano.com or call (800) 622-0385

Tips for applying for social security disability: 

• Find out if your personal physician will support your disability case. Your doctor may fill out an RFC form stating your medical condition and why you are unable to work.
• Submit copies of your most recent medical records and provide copies each time you submit an appeal.
• Promptly respond to correspondence regarding your case (phone calls, mail), call DDS for updates
• Remember your deadlines

Vitamin D

Routine blood work can show a deficiency in vitamin D, which is a very common problem. Often times, we lack adequate exposure to natural sunlight which plays a crucial role in maintaining proper vitamin D levels. Another cause of deficiency is an abnormal digestive process, like malabsorption caused by CF.

Deficiency of vitamin D can cause  hyperparathyroidism, osteoporosis, and osteomalacia. It can also negatively impact cell growth, bone growth, hormone regulation, affect the nervous and immune systems.

Sunlight is important in maintaining normal  levels because the sun synthesizes vitamin D from natural UV rays. It's converted to an active form by the kidneys and liver. About 10-15 minutes of sunlight is enough to absorb a daily dose.

Vitamin D enhances the immune system's functioning, aids in strengthening muscles, teeth, and bones, and facilitates the absorption of other vitamins.

The CF Clinic in Dallas requests labs (blood work) every visit. My vitamin D levels have always been low, despite taking a supplement daily.

Vitamin D enriched foods include:
(IU- International Units)

1 lg egg- 44 IU
raw white mushrooms- 164IU
1/2 fillet sockeye salmon- 1,400IU
camembert cheese- 44IU
1c of whole milk 124 IU 
 4 pieces of sushi 14 IU 
1 serving of tofu 157 IU 
1 serving of canned salmon 547 IU
1 packet of oatmeal 154 IU
1 serving canned tuna 234 IU 
1 c vanilla yogurt 122 IU
1 serving swordfish 566 IU

Always check with your doctor before you make any changes in your diet or the vitamins you take. While you don't want to be deficient, you don't want to have an overload either.


NIH

Always,

B.

Chicken Alfredo- High Calorie Recipe

Loaded Chicken Alfredo

From the kitchen of Rebecca Mia

Ingredients:

Barilla Angel hair pasta 16oz

Stick of butter

7 chicken breast

1 bag frozen peas 12oz

3 cups sliced mushrooms

1 small red onion

Weber garlic & herb seasoning

Salt & pepper

Garlic

Parmesan cheese

Directions:

Pasta: Bring 4 - 6 quarts of water to a rolling boil, add salt to taste. Add pasta. Stir gently. Return to a boil. Remove from heat. Drain well. Meanwhile, sauté onions, mushrooms and peas in butter

Chicken: Sprinkle Weber's seasoning to taste, preheat grill for medium heat, & lightly oil grate.

Cook chicken on grill until meat is no longer pink & juices run clear.

Sauce: Melt ½ stick butter in a medium saucepan over medium/low heat. Add the garlic, cream, pepper & salt, bring mixture to a simmer. Low heat- do not boil. Add the 1/2 c cheese, & continue to simmer sauce for 8 minutes or until thick.

Slice chicken; mix with sauce, pasta, & veggies

click here for a Downloadable recipe card 

Nutritional values are approximate.
0 values were not calculated
Serving size is 1.5 cups cooked, 1 chicken breast



label generator
calorie counter

CT scan vs X-ray

At every clinic appointment, I have go to the lab for x-rays. This past appointment, my doctor expressed the need for a CT scan (aka CAT scan) after viewing my x-rays.

So, what's the difference? 

Chest x-ray: left lateral

X-rays are the most commonly used imaging technique. Your body is positioned between the machine and photographic film. The machine sends electromagnetic waves through your body exposing you internal structure. The level of radiation is not harmful but you should inform the technician if you are or might be pregnant. Bones, tumors, and dense matter will appear as white or light on the image.The process takes only a few minutes.

A CT scan takes a 360 degree picture of internal organs, vertebrae, and the spine. It is more similar to an MRI than an x-ray. You can think of it as a highly sophisticated x-ray. Depending on the reason for the CT scan, a contrast dye might be used to make structures more visible. 

Types of dye include barium- which is used for gastro-intestinal CT views or iodinated which is used intravenously to highlight the vessels and tissue changes.

Chest CT can demonstrate various lung disorders:
-old or new pneumonia, show advancements of pneumonia
-tuberculosis
-COPD/emphysema 
-inflammation or other diseases of the pleura, the covering of the lungs
-diffuse interstitial lung disease

CT machine at BUMC

-lung cancer
-congenital abnormalities.

The machines used for CTs and x-rays also differ. The CT machine looks like a big donut and you lay on a bed that runs you through the center of it. There are receptors and x-ray tubes that spin around you and make a humming sound as they take pictures of your organs. 

Image captured: 

Radiation exposure of CT scans is higher than other forms of imaging.


Please remember, I am NOT a physician, radiologist, or in the medical field. I write based off of my knowledge and experience. 


Resource

High Sodium Tips

CF affects the body's epithelial cells- cells that are found in sweat glands, pancreas, and lungs amongst other places. A mutation in these cells causes an imbalance of water and salt in the body.

CF bodies secrete more sodium in their sweat than an average person. Because there is a decreased amount of salt and water outside of the cells, the mucus becomes very thick and difficult to cough up.

It is important for people with CF to consume higher amounts of sodium. This can prove difficult for many. A couple of suggested items are:

Gatorlytes- 780 mg of sodium, 400 mg of potassium

360 mg of sodium, 13 mg of calcium, 25 mg of magnesium, 100 mg of potassium

Clif Shot Bloks are delicious and have 50 mg of sodium per serving. They're inexpensive and I bet kids would love them- just like gummy snacks! They come in a variety of flavors like black cherry, strawberry, mountain berry, citrus and more.

Be sure to discuss any new items such as the above mentioned to your doctor and/or dietician for more information regarding your health. If you have elevated potassium levels or other complications, it may be best to ask your doctor if these are right for you. When consuming these, make sure adequate amounts of water are also consumed. 

Pulmozyme Patient Assistance Program

Pulmozyme was one of the first medications I was prescribed after my diagnosis! Back in the day, they used to let us mix it with albuterol to decrease time spent on treatments. I also used to save the tops of the vials and turn them in at the clinic for prizes like gift cards!

If you take Pulmozyme, there is a great resource available to you. Genentech offers a co-pay program to help with out of pocket expenses. I just signed up and it took a few minutes. You enter your demographic information, answer a few questions, and you can print your co-pay assistance card immediately after your submission. The discounted amount varies depending on your insurance type, income, household number, etc. If you are on Tricare or Medicaid you may not qualify for this benefit.

Sign up here !

Hope this helps!

Glucose Tolerance Test

What to expect...Glucose Tolerance Test (refer to Cystic Fibrosis Related Diabetes (CFRD) )

The test is done in several stages, each one is important to ensure the accuracy of your results. You may be asked to fast for 8 hours (may vary depending on type of diabetes being tested, medical condition, and doctor's preference), during this time you should only water and avoid consuming any food. Even the smallest bite of an apple can throw off your body's natural blood sugar levels and lead to a false positive/negative. 

Upon your arrival, a certified staff member will take a sample of your blood to find your "baseline" sugar levels. They might prick your finger tip or draw blood from a vein. This sample is referred to as a fasting blood glucose level. 

Next, you'll be asked to drink a special glucose mix. Sometime (if you're lucky!) they'll give you a few options for flavors, orange, lemon lime, or grape are some of the flavors I've had. To be honest, they aren't that delicious. Think of it like a flat fanta or sprite! You'll have to wait an hour then they'll prick you or access your veins again. Sometimes it's best to ask for an IV so they can draw blood without pricking you 10,000 times. It's totally up to you and the nurse to determine if this is an option or if it's recommended. Your blood will be drawn at hours 1, 2, and 3!

Depending on your results, your doctor may request another test or refer you to a nutritionist.

sidenote: I would recommend bringing a good book, iPad, or something to keep you occupied while you wait! Also, during my last GTT, I felt so lightheaded from fasting that I was unable to drive home. Fortunately, I had a friend drive me to the appointment so I didn't have to worry about not being able to make it back safely. Plan a yummy lunch immediately after! Be sure to drink plenty of water. If you're dehydrated, your veins won't be as easy to access! Good luck! 

*this information is based solely off of my personal experiences* 

CFLF- Cystic Fibrosis Lifestyle Foundation

Hello All!

I came across a great resource for us! The Cystic Fibrosis Lifestyle Foundation (CFLF) offers up to $500 grants for participation in exercise programs. Their recreational grants can be used for yoga classes, dance lessons, horseback riding and so much more! Click here to apply for a recreational grant! Don't forget to like their Facebook page!

I'm trying to decide what I want to do- horseback riding, yoga, or a gym membership! If you've received a grant or applied, comment about your experience!


G'Night,

Rebecca