Kathryn Norris, 21 - Cystic Fibrosis |
Behind the Smile of a Cystic
My personal spin with Cystic Fibrosis tips, tricks, positive outlooks. All while making my dreams come true! "Always Smile"
Friday, August 18, 2017
Help Me. Help You. Help Her.
Sunday, July 30, 2017
Essential Oils and CF
☡THEY DO NOT HEAL, CURE, TURN YOU IN A UNICORN, OR FIX anything. Always keep that in mind when thinking of essential oils. They can help ease, soothe, cool, and aid in a lot of different things, but they will never erase your health problems. Never, ever use them in replace of ANY prescribed medication. Only to help add to your medical treatments!!
Thursday, July 6, 2017
Body Image and CF
Monday, July 3, 2017
CF and Forgetting Meds
Knowing we need to take medications and do breathing treatments while living with a terminal, lifelong, chronic disease is common sense, yes! However when life happens you tend to forget the simplest things. We are all guilty of forgetting to take our meds, do treatments, and sometimes even to eat. That goes for those of us who are sick and our caregivers. Life is hard! To manage said life while being sick or caring for someome else who is sick, is even harder!!!
👨👩👧When I was younger I used to hate my mother always being on me every time I ate, when I came home from school, before bed, and when I woke up to take my pills and do my treatments. Oh, how I dreaded the phone call when I got to my friends houses or events. All I heard her say involved "take your meds" of course she told me to behave, leave with who I came with, and have fun. All I heard back then was nagging and I'm so thankful for it now! To this day I hear my mom's voice reminding me to do my nebs and take my meds, even when I forget on occasion she's still there.
I'm 30 now and have had C.F. from day one and STILL forget my meds. There is nothing wrong with forgetting! Infact, it's actually common and normal to go on with the day without thinking of medications. Especially, if you are feeling for the most part healthy at that particular moment.
Here are a few ways to remember your meds and nebs.
👀Recently, I've started to use the weekly pill holders and they sit beside my bed for when I wake up and when I go to bed! That way it's visually in front of my face. Not hidden in a medicine cabinet or closet, but where I can see them and be reminded to take them.
🕰You can set alarms on your phone that tell you it's med time. I know that seems simple and a little cheesy, but it does help. It's basically still being able to have your mom (or dad) nag you if they aren't there to do it. You could take it a step further and record your parents telling you to take them as the alarm sound. Also a spouse can work for this too.
🎮 I've used the pill reminder app, Medisafe before and it's amazing. It has an entire medication database that you can program each of the meds you take, dosages, times, and even what they look like. It is very easy to use and would come in handy for pre teens and teens to remember which meds and which times they needed to take. Most all teens have cells now, so it's a good bet it would help.
Give yourself a break when you forget, we are all human and it happens. Never be hard on yourself and if you are a caregiver, please don't get mad or angry at the Cystic for forgetting. I mean we lock ourselves out of houses and cars by being forgetful. It's the same concept!
Always Forgetful,
Sandi
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Monday, June 12, 2017
5 Judgements of CF
Going through life with an unpredictable disease such as CF, it forces you to develop thick skin! It's interesting to me when people find out that you are chronically ill they look at you in new way. The best is what people say to you and about you when they are healthy and think they "know" your disease.
It's almost like people tend to believe what or how they think I should act about my life. Living with a debilitating, life long, terminal illness I've heard it all like;
1. "You're sick again? You said you were sick last week too. Very convenient!"
📆 Cystic Fibrosis isn't the common cold and doesn't just go away! If I am sick it normally takes me 2-3 weeks of antibiotics before I start feeling better! Trust me I'd rather be going out with friends than sitting in a hospital bed for 16 days or more.
2. "Funny, she couldn't go with us to the mall yesterday, but she's dancing her ass off at a concert tonight?"
🎶One of the unexpected things about CF is that you can have all the energy in the world one moment and then two hours later you can barley walk to the kitchen. Do you really think I like being stuck in my house while all of my friends go out and paint the town? I've missed alot of special events for my friends and family and it devastates me!! However, there is nothing I can do about!
3. "She's perfectly fine! Look at her and tell me why she's can't work or go to school full time? If you ask me she's just playing the sick card."
💳 What makes anyone think that I would rather not be working than being independent and making my own money? CF takes away a ton of things in life and being able to work and attend classes are two of those things for many of us. I can't stand or walk for long periods of time without needing a break. I can't really lift a lot of heavy things with out struggling to catch my breath. I get winded just by standing and I hate it. Honestly, I'd give anything in order to go back to work or school full time. Unfortunately, I literally can't.
4. "Do you really need to sleep so much? Why are you so lazy?"
🛏 It seems like I'm lazy to you, I understand that but, it takes all of my effort some days to get out of bed. Cystic Fibrosis is primarily a lung disease and most people have no idea how much they take breathing for granted. When we sleep we are actually working overtime to breathe which doesn't allow us to be fully rested! It's a constant battle that I have no control over. So, yes I need to sleep that much I'm not lazy. It's sadly, not that simple.
5. "Look at that young woman parking in a handicapped parking spot. There is nothing wrong with her. She should be ashamed of herself"
♿ This one really gets me! I would love if my health matched the way I look on the outside. Being handicapped isn't always visible to the naked eye. I never like using the handicapped spots or the scooters in stores, but sometimes I have to. I feel terrible everytime I need to use these things. Even more so when people make horrible assumptions about me, without knowing my lungs only function at 20%, walking is difficult for me. Which is why those accommodations for someone like me are very important. You don't have to see my decaying organs for me to be handicapped.
I could go on and on with these examples that I've personally heard, but I think you get the idea. The quote, "Never judge a book by it's cover" is something everyone should live by.
I may have to cancel lunches, meetings, or even parties and that's out of my hands. Please, when you go to criticize a Cystic keep in mind we're not making it up. We don't want to live like this. We don't want to miss out on making memories. It's not like we can just slap on a patch or take a pill and get over it. We didn't choose CF, CF chose us!!
Think before you judge,
Sandi
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Tuesday, May 2, 2017
Healthy Foods and CF
Keep in mind all Cystic Fibrosis patients are different when it comes to weight management and what works for me may not work for anyone else. Not to mention our taste buds are all different as well.
The main things a Cystic needs extra's of are protein, iron, calcium, salt, and zinc! Here is a run down of breakfast only, if I did a list of a ton of meals I wouldn't enjoy reading it myself let alone asking you to read it.
🍇Fruits: Pair your eggs with a fruit of your choice. I prefer strawberries, bananas, or grapes. Of course all fruits are packed with vitamins and some even antioxidants that help fight infection. If you like oranges or grapes and have CFRD (CF related Diabetes) remember oranges, especially the little ones and grapes are FULL of natural sugars and you can hurt yourself eating too many! So, pace your fruit intake especially in the morning.
🌯Carbs: Everyone thinks it's bad to have carbs in your diet, but you actually do need them and some are good, some are bad. I have been going with Rye bread, or whole wheat tortilla wraps, and spinach for breakfast. Spinach is an excellent source of vitamins, magnesium, iron, potassium, zinc, protein, and dietary fiber. Making spinach a great carb to eat for CFers and who doesn't want to be like, Popeye?
I know green stuff is not something I would normally eat. In fact half of the time I just said I didn't like spinach only because, it was green! I mentally told myself that green food was going to be nasty. However, I am surprised that spinach with scrambled eggs, cheddar cheese, and a wheat wrap is, oh so yummy.
🍧Of course then you have other sides you can add like cottage cheese. Alot of people do not like cottage cheese, because of the texture and I understand that completely, I am the same way with tomatoes! However, it is a great side dish or snack to add to your meals. It is packed full of protein, good carbs, and the calories a Cystic needs to keep up the calorie intake. You can have it alone too, as a snack with fresh fruit, which is great!
Sunday, March 19, 2017
Insurance and CF
No, those are not real figures, I picked random ass amounts. These, however are real figures.
Sandi
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