Showing posts with label cff. Show all posts
Showing posts with label cff. Show all posts

Thursday, August 28, 2014

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

Saturday, August 9, 2014

Disability Resources

Disability resource look up by state


The American Disabilities Act online 


To file discrimination charges against an employer EEOC


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

Tuesday, August 5, 2014

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


Wednesday, July 30, 2014

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. 

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

Monday, July 14, 2014

You are what you eat...

According to the Cystic Fibrosis Foundation website: 

CF Diet – In CF, a high-calorie, high-fat diet is vital for normal growth and development in children, and offers adults a way to maintain optimal health. The dietitians at CF Foundation-accredited care centers work with patients and their families to map out the best diet for each person.
Nutrition and general lung health are closely linked. People with cystic fibrosis may need extra calories to compensate for the malabsorption of nutrients. These extra calories also help to meet the greater energy needed for breathing. In fact, for children with CF, extra fat calories are good for fueling normal growth and development. 

There are right and wrong ways to maintain a high calorie diet.



Calories do not have to come from bad sources. There are ways to increase fats and calories while also increasing nutrition. There is a direct correlation between diet and health. The food that we consume serves as information to our body...when the body receives the information it determines how to use it. By sending our body incorrect information, we can confuse the metabolic process causing our health to decline. The nutrients packed in food enables the cells in our body to do their job. Food plays an important role in our growth, development, and maintenance. Without proper nutrition, the aspects of functioning can be negatively influenced. 

Here are some good choices that both incorporate high calorie and good fats:

Peanut butter- rich in protein, healthy fats, and aids in muscle mass buildup and cardiovascular health. Just two tablespoons of peanut contains appox 200 calories and upwards of 16g of good fat.

Avocados- rich in B6, C, E, K, potassium, magnesium, and folic acid and they have approx 380calories and 35g of fat (medium to large California avocado).

Olive Oils – have 124 calories and 14g of fat per tablespoon. The Mayo Clinic has findings that some research shows that MUFAs (monounsaturated fatty acids – healthy dietary fats) may also benefit insulin levels and blood sugar control, which can be especially helpful if you have insulin problems related to diabetes.

Eggs – 1 large egg contains 70 calories and 5g of fat with 6g of protein. Even though eggs sometimes get a bad rap for higher levels of cholesterol, the tradeoff is they are rich in natural B vitamins (B2, B6, and B12).

Nuts- help control blood glucose levels, rich in fiber and protein. One ounce has about 160-190 calories and 16g of fat. Mixed nuts are both rich in vitamins and minerals. My only concern here is that nuts are also high in dietary fiber, so watch out how many you consume in one sitting!

Bananas- rich in vitamin A, thiamine, B6, fiber, folic acid. Bananas have almost doubled the calories of other fruits- a large one has about 120 calories.

Granola- (w/nuts, whole wheat, molasses, honey)  loaded with fiber and essential oils, one cup is roughly 597 calories.

Dried fruit- loaded with calories, about 400 in one cup!

Various fruits and vegetables have calming effects on the cells, anti-inflammatory properties, and serve as antioxidants.

Health benefits of various fruits and veggies:

Carrots- beta carotene, anti-inflammatory effects, reduces bile and fat in the liver

Oranges – 1 large orange has 65mg of vitamin C, which helps push glycolysis and strengthens hair, nails, arteries and veins.  

Watermelon- vitamin C, antioxidant, muscle relaxant

Cucumber- vitamin K

Kiwi- natural enzymes (proteases), sleep aid

Apples- boost immune system, blood sugar regulation


It can be really hard to go from eating a ton of Twinkies, ice cream, and burgers to controlling your diet. I've slowly transitioned from junk food to healthy food with junk treats!

I try to eat kiwis and pineapples daily, they have natural enzymes (proteases) that break down the proteins. I've also started drinking Bolthouse Carrot juice mixed with orange juice. This really alleviates the late night coughing spells since carrot juice is super high in Vitamin A.

Having CF doesn't justify eating whatever you want. If anything, we should be more cautious with what we put in our body. Our bodies are sensitive and already weakened, by consuming so much processed junk, our bodies are working twice as hard to break that food down and maintain a pattern of homeostasis. When it comes to empty calories, we aren't really benefiting ourselves.

Know what you eat. Here is a great website to be able to look up different foods and their nutritional content. Let’s see what you all come up with for healthy choices!



Good eats! 

B.

Wednesday, July 9, 2014

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!












Tuesday, June 17, 2014

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* 


Wednesday, April 16, 2014

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