View the link below to sign a petition in regards to the budget cut for medical research and drug review. By cutting the budget a cure or advanced medications can be severely delayed. As you all know, CF is a progressive and chronic illness...there's no time to waste.
Thank you in advance for your support.
http://hq-nu.salsalabs.com/o/50674/p/dia/action3/common/public/index.sjs?action_KEY=7983
-B.
Friday, March 28, 2014
Tuesday, March 25, 2014
Images
For those of you that know me personally, you know that I enjoy learning. Unless I'm forced to. Well, I recently finished my biology 1 & 2 courses. I wasn't the least bit interested while I was taking them but now I've developed an interest based off of the knowledge the classes provided me with. Who knows, I might be a microbiologist...but probably not.
The pictures below are fascinating to me. some of them are microscopic views of the bacterias in my pitri dished lung and the others are just common bacteria found in CF patients.
Enjoy!
(resource: www.cff.org/LivingWithCF/Webcasts/ArchivedWebcasts/Germs/)
Burkholderia Cepacia (B.Cepacia)
Methicillin-resistant Staphylococcus aureus
Mycobacterium Avium
Nontuberculous mycobacteria
The pictures below are fascinating to me. some of them are microscopic views of the bacterias in my pitri dished lung and the others are just common bacteria found in CF patients.
Enjoy!
(resource: www.cff.org/LivingWithCF/Webcasts/ArchivedWebcasts/Germs/)
Burkholderia Cepacia (B.Cepacia)
Monday, March 17, 2014
Helpful Hints
Diet tips and tricks for CF patients:
Consume more foods that decrease mucus production, such as:
-garlic
-onions
-celery
-pickles
Avoid:
Coffee, caffeine, alcohol, and other stimulants. Caffeine constricts your blood vessels causing your body to work harder to get the blood flowing through the veins. There are blood vessels in your lungs and when you consume large amounts of caffeine those vessels also constrict, making it harder to breathe.
Eat more foods that contain digestive enzymes like pineapples and papayas.
Foods rich in antioxidants:
Eggplant
Apples
Berries
Beans
Grapes
Vitamins that boost the immune system :
Zinc: whole grains,seafood, fortified cereals
Yogurt is great for you because it contains probiotics, healthy bacteria that keep your intestinal tract in balance.
These are just a few things I've incorporated into my diet as of late. About two weeks after eating Greek yogurt every day, along with a water and 20 almonds, I've felt more energized and I also sleep better.
Please make sure you discuss any major changes in your diet with your nutritionist. Also, make note of any food allergies you have and be sure to avoid consuming them.
Later!
-B.
Saturday, March 15, 2014
Chronic Illnesses and Depression
CF is a chronic illness, meaning that it cannot be cured. It is also a progressive disease, which means that overtime the condition worsens (progresses.)
Many people with chronic illnesses also suffer from depression, it's an unfortunate fact of life. I spent my late teen years depressed as a result of being fixated upon the fact that I am not expected to live past the age of 37.
For many people, CF limits their independence, quality of life, and overall satisfaction and enjoyment in life. Hours of treatments, various tubes dangling from your body, and the plain and simple fact that you are just different, and there isn't a way to fix it are more than enough reason to be depressed. The physical effects of CF are enough to lead to depression, and the physical effects of depression can worsen your condition. Symptoms of depression include but are not limited to fatigue, lack of appetite, and insomnia.
Coping with depression:
Many CF clinics offer a psychiatrist or counselor to the patients and their immediate family members. While this resource is often unused, it is by far one of the biggest steps in the right direction. A psychiatrist that understands CF will have a better understanding of how you feel and why you are feeling that way. They are not intended to be there to judge you or analyze every aspect of your existence, they are there for you to talk to about how you're feeling. Once those feelings are out in the open you are able to look for solutions and treatments. Medication that can balance the chemicals that cause depression can be prescribed, in addition to the learning of new coping mechanisms.
For me, personally, one thing that has led me further away from depression is knowing that every one has some sort of burden to bear. My psychiatrist is able to hear me out, we can compose game plans of when we know I'm more likely to become depressed (like when my PFT's are down, I'm prescribed a new medicine, or when I can't participate in an activity because I'm sick). I highly recommend discussing options with your doctor. They'll figure out whats best for you and from there you can gain control of your life and emotions again.
Many people with chronic illnesses also suffer from depression, it's an unfortunate fact of life. I spent my late teen years depressed as a result of being fixated upon the fact that I am not expected to live past the age of 37.
For many people, CF limits their independence, quality of life, and overall satisfaction and enjoyment in life. Hours of treatments, various tubes dangling from your body, and the plain and simple fact that you are just different, and there isn't a way to fix it are more than enough reason to be depressed. The physical effects of CF are enough to lead to depression, and the physical effects of depression can worsen your condition. Symptoms of depression include but are not limited to fatigue, lack of appetite, and insomnia.
Coping with depression:
Many CF clinics offer a psychiatrist or counselor to the patients and their immediate family members. While this resource is often unused, it is by far one of the biggest steps in the right direction. A psychiatrist that understands CF will have a better understanding of how you feel and why you are feeling that way. They are not intended to be there to judge you or analyze every aspect of your existence, they are there for you to talk to about how you're feeling. Once those feelings are out in the open you are able to look for solutions and treatments. Medication that can balance the chemicals that cause depression can be prescribed, in addition to the learning of new coping mechanisms.
For me, personally, one thing that has led me further away from depression is knowing that every one has some sort of burden to bear. My psychiatrist is able to hear me out, we can compose game plans of when we know I'm more likely to become depressed (like when my PFT's are down, I'm prescribed a new medicine, or when I can't participate in an activity because I'm sick). I highly recommend discussing options with your doctor. They'll figure out whats best for you and from there you can gain control of your life and emotions again.
Friday, March 14, 2014
The Use of Ibuprofen
A beneficial medication for patients with Cystic Fibrosis is Ibuprofen Therapy, as some may refer to it.
Ibuprofen is a NSAID (non-steroidal anti-inflammatory drug) which means it will not offset your bodies natural hormonal balance. OTC ibuprofen is often taken to manage/treat:
In 1995 the CF Foundation published results of a 4 year clinical trial of ibuprofen in people with CF ages 5-39.
Ibuprofen slowed the rate of pulmonary decline over a 4 year period (CF patients lose 4% of function per year on average)
Ibuprofen consumers had better growth
Ibuprofen consumers had less hospitalizations
Please note that ibuprofen will not improve lung functions or stop pulmonary exacerbations.
ibuprofen is also sold as: Motrin IB, Advil, Nuprin
Before taking ibuprofen, discuss it with a doctor to determine if it is right for you, what dosage would be best, and possible side effects.
Remember:
I am not a doctor. I am a CF patient. This information is from the cff.org website and my knowledge of this medication as a person with CF. This is not medical advice and should not be used as such.
sincerely,
B
Ibuprofen is a NSAID (non-steroidal anti-inflammatory drug) which means it will not offset your bodies natural hormonal balance. OTC ibuprofen is often taken to manage/treat:
- arthritis
- menstrual cramps
- fever
- toothache
- minor injuries
- anti-platelet (reduces blood clots, not as effective as aspirin)
In 1995 the CF Foundation published results of a 4 year clinical trial of ibuprofen in people with CF ages 5-39.
Ibuprofen slowed the rate of pulmonary decline over a 4 year period (CF patients lose 4% of function per year on average)
Ibuprofen consumers had better growth
Ibuprofen consumers had less hospitalizations
Please note that ibuprofen will not improve lung functions or stop pulmonary exacerbations.
ibuprofen is also sold as: Motrin IB, Advil, Nuprin
Before taking ibuprofen, discuss it with a doctor to determine if it is right for you, what dosage would be best, and possible side effects.
Remember:
I am not a doctor. I am a CF patient. This information is from the cff.org website and my knowledge of this medication as a person with CF. This is not medical advice and should not be used as such.
sincerely,
B
Thursday, March 13, 2014
MOLD & MILDEW
There's nothing worse than that musky moldy/mildewy scent. Where does it come from?
Mold is a type of fungus that comes from decaying matter. For example, leave a potato in your pantry for too long, what happens? It gets mushy, the colors change, and it starts to smell terrible. Mold in large quantities can affect the respiratory system, however, because people with CF are more susceptible to things like this, even a small quantity can cause a flare up.Some molds produce mycotoxins, which pose serious health risks. High levels of exposure can cause neurological problems as well as death. Daily exposure can be especially harmful. Mold can be found in dark, damp areas. Behind the toilet, crevices near the bathtub, near pipes and faucets. Mold is fuzzy, and usually green, black, orange or brown.
ways to prevent mold:
dry wet areas immediately
proper ventilation
monitor humidity
Mildew is also a type of fungus. It starts as a yellow spot, becomes brighter, and then it darkens.
remove infested plants
dry wet areas immediately
keep areas moisture free
You need to guard yourself against mold and mildew because it can exacerbate your symptoms.
Mold is a type of fungus that comes from decaying matter. For example, leave a potato in your pantry for too long, what happens? It gets mushy, the colors change, and it starts to smell terrible. Mold in large quantities can affect the respiratory system, however, because people with CF are more susceptible to things like this, even a small quantity can cause a flare up.Some molds produce mycotoxins, which pose serious health risks. High levels of exposure can cause neurological problems as well as death. Daily exposure can be especially harmful. Mold can be found in dark, damp areas. Behind the toilet, crevices near the bathtub, near pipes and faucets. Mold is fuzzy, and usually green, black, orange or brown.
ways to prevent mold:
dry wet areas immediately
proper ventilation
monitor humidity
Mildew is also a type of fungus. It starts as a yellow spot, becomes brighter, and then it darkens.
remove infested plants
dry wet areas immediately
keep areas moisture free
You need to guard yourself against mold and mildew because it can exacerbate your symptoms.
Monday, March 10, 2014
Creon
As previously mentioned, my primary issue with CF is my digestive system. I have lung issues as well, but I've been able to manage it for the past year with a serious regimen of treatments and working out. Many, but not all CF'ers have to take Creon (enzymes that aid in the digestion of food).
Some CF mutations also affect your pancreas, causing exocrine pancreatic insufficiency, also known as EPI. EPIC prevents your body from properly breaking down the foods, which also prevents your body from getting the proper nutrients it needs to function.
Creon is an enzyme replacement drug. It is a mixture of lipase (breaks down lipids), amylase (breaks down starches into sugars) and chymotrypsin (aids in breaking down proteins).
The prescription of Creon varies from patient to patient, and mutation to mutation. It is very important to take Creon just as your doctor instructs. Take Creon with meals.
Some CF mutations also affect your pancreas, causing exocrine pancreatic insufficiency, also known as EPI. EPIC prevents your body from properly breaking down the foods, which also prevents your body from getting the proper nutrients it needs to function.
Creon is an enzyme replacement drug. It is a mixture of lipase (breaks down lipids), amylase (breaks down starches into sugars) and chymotrypsin (aids in breaking down proteins).
The prescription of Creon varies from patient to patient, and mutation to mutation. It is very important to take Creon just as your doctor instructs. Take Creon with meals.
Saturday, March 8, 2014
Breakfast!
Breakfast is an extremely crucial meal, which I'm sure many of you already know. It refuels the body and the brain with the energy and nutrients needed to get you through the day. It also improves mental alertness gives you more strength for physical performance.
My usual breakfast consists of:
20 Blue Diamond Whole Natural Almonds- build strong bones and teeth, promote brain health, nourish the nervous system, good for your heart, and many other benefits.
Blueberry Chobani Yogurt- a 6oz cup of this yogurt contains 140 calories, 0 from fat. 20% of your daily value of calcium, 28% DV of protein. Contains all natural ingredients and has 3 types of probiotics. Probiotics are basically bacteria that are good for your body. Blueberries are rich in antioxidants, promote brain health, have a natural anti-depressant, and a number of other benefits.
http://chobani.com/coupons/
Chocolate Pediasure: tastes great, high in calories and vitamins!
My usual breakfast consists of:
20 Blue Diamond Whole Natural Almonds- build strong bones and teeth, promote brain health, nourish the nervous system, good for your heart, and many other benefits.
Blueberry Chobani Yogurt- a 6oz cup of this yogurt contains 140 calories, 0 from fat. 20% of your daily value of calcium, 28% DV of protein. Contains all natural ingredients and has 3 types of probiotics. Probiotics are basically bacteria that are good for your body. Blueberries are rich in antioxidants, promote brain health, have a natural anti-depressant, and a number of other benefits.
http://chobani.com/coupons/
Chocolate Pediasure: tastes great, high in calories and vitamins!
Wednesday, March 5, 2014
Dating & Cystic Fibrosis
Dating and CF...how do the two mix?
I, personally, am very open about having CF. One of my favorite things to do is to tell people about it. Self disclosure in a relationship varies by a number of factors. You may not want to share that you have CF because you feel like it will scare the person away...or you may not know how to bring it up. For some of us CF is a little more obvious (those with PICCs/Ports, o2, etc). At some point or another in your relationships (friendships, too!) you might feel the need to share this private portion of your life. Here are just a few tips from my personal experiences, along with a little bit of my background.
1. It's important to tell those around you because a situation may arise where it is pertinent to your health. EX: Dinner with friends, and they want to sit in the bar area of the restaurant...is that the wise thing to do?
2. You're dating someone for a couple of months, and they want to know why you never stay the night. Well, because doing treatments in front of someone as attractive as you is embarrassing!
Of course everyone will take the news differently. Some will know what CF is from a TV show, or friend of a friend, or even a friend! Others will have no idea what you're saying. I usually tell people very early on. If I'm dating a guy for two months, he already knows. If I'm on a second date, he already knows. I like to get it out in the open so that if he is uncomfortable with my condition, medication, and hospital routine, he can leave without our feelings becoming too involved.
Over the past 10 years I've had people say some pretty hurtful things to me. Kids in high school spread rumors about me having AIDs...I was made fun of for skipping my noon class for treatments, I've had guys tell me they don't want to date me because you date to get married....and who would want to marry a sick person?
Some of you know me, some of you do not. For those of you that do not, you will after this.
I was married for 2 years. I got married at 21, and divorced at 23. The "man" (using that term loosely, because he was more of a mouse) I was married to was in the military. He deployed, had an affair, and we divorced. When the affair came to the surface there were 300+ emails completely bashing me. These emails were between him and his fellow female soldier whom he was involved with. A majority of the emails talked crap about me, and how I was faking sick for attention. They also included the "well, just stay married a little longer, she won't live forever, collect the insurance, move on." and "what's it like being married to someone that you know is going to die?" HELLO, we're all going to die!
When I explain CF to someone, it goes something like this:
I have Cystic Fibrosis, it's a genetic disease that primarily affects my lungs. I get sick, I take a lot of medicine, and I get exhausted really quickly. I have appointments, a special diet, and I wasn't expected to live past 14...however, because I'm genetically awesome, I've been able to overcome it.
It's serious, informative, and a little fun at the end. I also do a lot of fundraising/awareness things for the CF Foundation.
The world is full of narrow minded, selfish people. I encourage you to use your best judgment, and listen to your instincts when disclosing CF. Life isn't easy, the last thing you need is someone who won't support you.
-B.
I, personally, am very open about having CF. One of my favorite things to do is to tell people about it. Self disclosure in a relationship varies by a number of factors. You may not want to share that you have CF because you feel like it will scare the person away...or you may not know how to bring it up. For some of us CF is a little more obvious (those with PICCs/Ports, o2, etc). At some point or another in your relationships (friendships, too!) you might feel the need to share this private portion of your life. Here are just a few tips from my personal experiences, along with a little bit of my background.
1. It's important to tell those around you because a situation may arise where it is pertinent to your health. EX: Dinner with friends, and they want to sit in the bar area of the restaurant...is that the wise thing to do?
2. You're dating someone for a couple of months, and they want to know why you never stay the night. Well, because doing treatments in front of someone as attractive as you is embarrassing!
Of course everyone will take the news differently. Some will know what CF is from a TV show, or friend of a friend, or even a friend! Others will have no idea what you're saying. I usually tell people very early on. If I'm dating a guy for two months, he already knows. If I'm on a second date, he already knows. I like to get it out in the open so that if he is uncomfortable with my condition, medication, and hospital routine, he can leave without our feelings becoming too involved.
Over the past 10 years I've had people say some pretty hurtful things to me. Kids in high school spread rumors about me having AIDs...I was made fun of for skipping my noon class for treatments, I've had guys tell me they don't want to date me because you date to get married....and who would want to marry a sick person?
Some of you know me, some of you do not. For those of you that do not, you will after this.
I was married for 2 years. I got married at 21, and divorced at 23. The "man" (using that term loosely, because he was more of a mouse) I was married to was in the military. He deployed, had an affair, and we divorced. When the affair came to the surface there were 300+ emails completely bashing me. These emails were between him and his fellow female soldier whom he was involved with. A majority of the emails talked crap about me, and how I was faking sick for attention. They also included the "well, just stay married a little longer, she won't live forever, collect the insurance, move on." and "what's it like being married to someone that you know is going to die?" HELLO, we're all going to die!
When I explain CF to someone, it goes something like this:
I have Cystic Fibrosis, it's a genetic disease that primarily affects my lungs. I get sick, I take a lot of medicine, and I get exhausted really quickly. I have appointments, a special diet, and I wasn't expected to live past 14...however, because I'm genetically awesome, I've been able to overcome it.
It's serious, informative, and a little fun at the end. I also do a lot of fundraising/awareness things for the CF Foundation.
The world is full of narrow minded, selfish people. I encourage you to use your best judgment, and listen to your instincts when disclosing CF. Life isn't easy, the last thing you need is someone who won't support you.
-B.
Saturday, March 1, 2014
Kiwi!
Health benefits of kiwi:
1. kiwi contains actinidain which is a protein dissolving enzyme that aids in digestion.
2. boosts your immune system because of the high vitamin C content and antioxidants
3. great source of fiber
4. low glycemic index makes it safe for diabetics, won't raise your blood sugar drastically
5. aids in alkaline balance which helps skin, energy, and sleep
6. great source of vitamin E for healthy skin
7. naturally organic! you can even eat the fuzz, if you'd like!
source: USDA
1. kiwi contains actinidain which is a protein dissolving enzyme that aids in digestion.
2. boosts your immune system because of the high vitamin C content and antioxidants
3. great source of fiber
4. low glycemic index makes it safe for diabetics, won't raise your blood sugar drastically
5. aids in alkaline balance which helps skin, energy, and sleep
6. great source of vitamin E for healthy skin
7. naturally organic! you can even eat the fuzz, if you'd like!
source: USDA
Creating a Routine
With all of the medications and treatments we CF'ers have to do, it's hard to balance them along with striving to live a normal life. Here are some tips that I've used to help succeed medically and socially!
1. write down all of the things you have to do in the order that they need to be done. what is most important? what can wait?
2. determine how much time each task will take (for things like Tobi treatments, use an approximate guess. It's always good to give extra time for this, and if it takes less than you planned, yay! free time!
3. leave room for exceptions and emergencies. for example, you put 15 minutes to drive to work.you were running 3 minutes late, and you hit every red light! Go ahead and allow 20 just to be safe!
4. create a checklist, and invest in a sturdy day planner! Check the things off as you go.
Many people don't have to worry about time management because they aren't bound by medical treatments and therapies. Be sure that once you create this routine, you stick to it! It takes 6 weeks to create a habit and only 3 days to break it!
Best of luck!
B.
1. write down all of the things you have to do in the order that they need to be done. what is most important? what can wait?
2. determine how much time each task will take (for things like Tobi treatments, use an approximate guess. It's always good to give extra time for this, and if it takes less than you planned, yay! free time!
3. leave room for exceptions and emergencies. for example, you put 15 minutes to drive to work.you were running 3 minutes late, and you hit every red light! Go ahead and allow 20 just to be safe!
4. create a checklist, and invest in a sturdy day planner! Check the things off as you go.
Many people don't have to worry about time management because they aren't bound by medical treatments and therapies. Be sure that once you create this routine, you stick to it! It takes 6 weeks to create a habit and only 3 days to break it!
Best of luck!
B.
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