Help Me. Help You. Help Her.

"My challenge? Cystic Fibrosis. My dream? To breathe freely with a new pair of lungs." - Kathryn Norris

As most of know by now, I am a wellness advocate for, doTERRA essential oils and have loved being able to help other CFers with the, Breathe Respiratory Oil Blend. I want to help Cystics breathe a little easier. 

Which, is why I've decided to do a fundraiser in hopes to help all CFers experience the feelings of open airways, calming a cough, and actually geting mucus up and out of your lungs when you use a diffuser. 💨Always continue to use your nebulizer medications.

⚠Now, before I get bombarded about selling something for my own benefit. I'm not trying to get around that part. The goal for me here isn't to make money, but to help you and Kathryn in the long run.

If you've followed my CF journey, then you know that I have made an incredibly difficult decision of NOT getting a double lung transplant. Even though I'm opting out of a transplant, I still support and love the the option for a second chance for everyone who wants one!! Everyday I look forward to hearing that another Cystic has received that special phone call. That is where, Miss Kathryn Norris and I have crossed paths. 

♻Being a 21 year old female the only issues you should be worried about is how you did on your midterms, making special bonds, what club are you going to Thursday night, and enjoying life like a young adult is supposed to. However, when you are diagnosed with Cystic Fibrosis, those worries are replaced with more serious and sometimes terrifying situations. 

Being diagnosed with CF at 3 months old, Kathryn has always had a dark cloud following her every move. Yet, that hasn't slowed her down any as she is on top of this thing called life.

A senior at Maryville College for graphic design Kathryn puts her spirit, kindness, and lungs to the test. This girl is very dedicated to having a great life outside of the thousands of hours invested in breathing treatments, medications, hospitalization, and supplemental oxygen. Participanting on the dance team, singing in the choir, and being an artists in many forms she has a bright future ahead of her. I for one can not wait to what is yet to come. You can bet nothing is stopping her anytime soon. 

♻Going in for her initial double lung transplant evaluation based on her lung function drastically dropping 80% throughout the years, they found out she is also in need of liver transplant. This is a complication that she wasn't expecting and unfortunately, she will have to relocate for long term health-care. You can only imagine the amount of stress this puts on a person and a family.

That is where my proposal comes from;

Help Me = By getting this oil in the hands of as many Cystics as possible. Yes, I do sell doTERRA, which in turn helps me financially on every other oil, the exception of this fundraiser with the Breathe Respiratory Blend.

Help You = The Breathe Respiratory Blend oil can be used for opening your airways making it easier to breathe for someone with CF or any respiratory issues. Using this specific oil along with ALL of your medications and treatments as prescribed, is a great way to stack the deck.

Help Her = For every 15mL bottle of  the doTERRA Breathe Respiratory Blend sold at $26.66, I will be donating $5 directly to Kathryn's transplant fund. (If you'd rather donate straight to her and not get an oil click the link)

⚠I AM NOT MAKING ANY MONEY FROM THIS DEAL! My full commission is being donated!

Benefits of the Breathe Respiratory Blend. Please contact me for ordering purposes. 

Now, I know $5 isn't really a ton of money, however the more bottles sold, of course means more that gets donated straight to Kathryn. Along with more people getting the benefit of this awesome oil.

🎈Keep in mind when it comes to oils everyone is different. Some people have a great response to them and some people see no difference at all and some people have skin irritation. Here is what two CF patients have to say about the Breathe Respiratory Blend oil along with some others. 

"I've read on essential oils for a while now and find that they help many people in a lot of ways. They help people like myself with Cystic Fibrosis and can help with calming you down in moments of stress. I enjoy the doTERRA Breathe Blend, I've used it when I feel tight in my chest and it helps open me up and feel better, I even dab a small amount on my finger to rub on my mask as I workout when I'm feeling the tightness in my chest starts to bother me, it helps calm my cough and I feel relief to return to my workouts. I use, doTERRA's On Guard Blend each morning. I rub  it on my skin to help fight and build my immune system. I put a few drops of Lemon oil in my water when I go to the gym and Lavender helps me to rest at night." - Scotty, 33

"I love the doTERRA set that I bought. I got the diffuser and the roll on oils. The oils smell great and are not too strong or overwhelming. I use the roll on, on myself and I open them up and put a few drops into the diffuser. My favorite is the Breathe oil and I feel like it just opens up my sinuses. I feel like it is slightly easier to breathe while using it. I want to thank Sandi, so much for bringing these to my attention and for answering any questions I have had".- Alicia, 26

Kathryn Norris, 21 - Cystic Fibrosis 

For more information on Kathryn, follow her on IG @Knorris301 or donate directly to her GoFundMe page! 

Essential Oils and CF

I've heard everything there is to hear about selling doTERRA oils and most of it, is a misunderstand of what they do! Think of it like this aromatherapy has been around for YEARS and so has homeopathic ways of aiding aliments. That's all it is! 

☡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!!

Now, this blog has the potential to be pretty long I am going to try to break it down without you reading a novel. 

🌾To answer the most basic question I am getting, essential oils are naturally occurring, volatile aromatic compounds found in the seeds, bark, stems, roots, flowers, and other parts of plants. When the oils are extracted from the plants, they can be used as single oils or in oil blends to increase emotional and physical wellness. If properly extracted, essential oils have the unique ability to benefit people in all areas of life, whether in food preparation, beauty treatment, or health-care practices.

I know, I know, but what does all that mean in real talk, right? 

🌼Lets go with, chamomile teas. People have been drinking them forever, to help calm them, aid with sleep, soothe your stomach, ease headaches, and so much more. That is exactly what the doTERRA Roman Chamomile oil does without needing to drink the nasty tea, I can't stand the taste. It can also aid in curbing anxiety feelings, calming your allergies, and can even help with PMS symptoms. 

💦Oils can have a positive effect on you, if you know what each oil can aid with and how to use them to see the best results for you. Now, keep in mind everyone is different when it comes to what works and what doesn't. Also, everyone tolerates scents differently. For the most part diluting your oils with a base of coconut oil, is the best way to use oils topically. That way it won't be as strong and it won't irritate your skin. 

You do not NEED a diffuser for your oils, however it can be nice if you are using them for health purposes, to breathe in the oils from the steam. You can also put the oil in your hand and directly inhale them that way, or put them on your pressure points on your feet and hands. Taking a nice hot bath with 2 drops of your favorite oil is also a great way to breathe them in. 

❣To get to the questions as to what are my favorite oils personally, that's a tough one. I go back and forth with several different ones to be honest. However, if I were to pick I'd say the doTERRA Lavender, Breathe Blend, Lemon, OnGuard Blend, Peppermint, PastTense Blend and Vetiver. All of which help aid sleep, open airways, ease infections, soothe headaches and much more. The best ones for a bubble bath though are lavender and the Breath Blend, in my opinion! Very relaxing! 

♻Now, while I just started selling doTERRA I am getting ready to do a pretty awesome promo including the doTERRA Breathe Blend. For every bottle sold, at $20 a bottle wholesale ($26.66 retail) I will be donating $5 to a CFer who is raising the funds for a lung transplant. I thought about donating to the CFF, however I realized it would be better used if I could give it directly to those who actually need it!

So, help me help you breathe a little better. While we together help someone else breathe better forever!

   Sandi 

For more on doTERRA or Cystic Fibrosis follow me on Facebook!

Body Image and CF

Having C.F. can be really challenging for your self-esteem. Unfortunately, for us the characteristic of this disease can't be escaped!!

Growing up being very thin and being picked on for it can be difficult. I can't count how many times I've been told to eat a cheeseburger or made fun of for being "anorexic" when I wasn't. Hell, I didn't even know what anorexia was the first time I was "mocked" for it.

The worst part is people will never change and body image will always be a huge issue no matter who you are.

When you start to notice the little things that start to bother you like, your rib cage being slightly more noticeable than your "healthy" friends. Thus making your tops always fit differently than you think they should, can be discouraging. Wearing jeans in children's sizes well into your 20's can be a bit embarrassing, especially when name brands never fit and you want to be trendy like your friends. When you start to see what "clubbed nails" actually are compared to others it can be unnerving. It can be depressing if you go to a nail salon and have to explain it or the nail tech shows her coworkers your hands while speaking in other languages in front of you.

I know all of these things all to well and I'll be the first to admit it all still bothers me a little bit! Until I remember it's ALL my way of being beautiful and unique. The best part about all of these things is that you can learn what it's like to love the skin you're in a lot sooner than most people. 

The upside to having Cystic Fibrosis, if you can see this as an upside, we tend to mature a lot quicker than most people our age. In turn we grasp life differently, because we have to!

☝️For example; When most teens are making sure their hair is just right for prom pictures, we are wondering if our PORT and scars are visible in our dress. College graduates worry they will fall off the stage when getting their diploma and embarrass themselves. While we worry about disturbing everyone by coughing through the entire two hour ceremony, with all eyes on us in disgust. When most people in their 20's are chasing their kids around trying to lose their baby weight, we are struggling to gain weight while planning lung transplant evaluations, hoping for a family one day. 

Our insecurity issues are normally never the same as "healthy" people. In fact we have those issues and then some. 

Knowing that our bodies are different is unfortunately one of the first realizations of having C.F. It's something we can't help, but to notice. Beauty standards and peer acceptance is forced down our throats from a young age. It's all about how we deal with it that matters!! 

🚸This is where I, your support system, and the internet comes in handy. YOU'RE NOT ALONE in this stuggle! I promise!

The online C.F. community is a large one and for the most part can relate to one another when it comes to body image. Never be worried to reach out to another Cystic when you're feeling down and need to know someone else has been there and can help you through it! 

Remember, CFers are beautiful! It's in our DNA to be different and stand out!! Which, in my opinion is a lot better than being a cookie cutter person! The sooner you understand that the happier you'll be with your own body image. 

🛇I must point out we are all different and not EVERY Cystic has thought these things or goes through the same situations. As we are all different!!

Never Alone,

  Sandi

If you ever need someone to talk to or more C.F. information find me on Facebook!

CF and Forgetting Meds

Every single day we wake and remember to breathe, because if we don't we die. Our meds and nebs should be just as easy to remember to take right? Wrong!

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

For more tips or C.F. insight like me on Facebook!!

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

For more Cystic Fibrosis through my eyes, follow me on Facebook!

Healthy Foods and CF

I asked a hand full of Cystic's what they felt was the hardest thing to manage both literally and financially and FOOD was the number one answer!

I'm the first one to grab something covered in sugar or some deep fried goodness, but my husband and I have decided to start eating healthy. Now, for someone with CF that is extremely risky and tricky as we need salt, extra fat, protein, and sugar to keep us going.

Not to mention the amount of calories needed for a Cystic to thrive and maintain what little weight we can gain, is roughly 4,500 a day. So, here are a few tips and pictures for meals that I have made this past week for myself and my husband that were actually very tasty and have the nutrition that someone with CF needs along with not making the hubs gain a ton of weight.

🍝I simply add extra helpings to my plate after the main meal is made!

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. 

🍳Proteins: I have been using a lot of eggs for both breakfast and snacks and even in some dinners. Eggs contain iron, minerals, vitamins, and protein which are all great for anyone fighting disease or just wanting to be healthy in general. Me personally, I do purchase organic free ranged eggs, that is not necessary to do. One egg contains only 75 calories, to make sure you get the right amount of calories feel free to have more than one egg for breakfast.

🍇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.

🌱Now, again be careful with spinach or any dark leafy greens if you are on any type of blood thinner. Vitamin K helps your blood clot. In turn doing what your blood thinner is trying to stop!

🍧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!

Now, a dietitian will tell you not to eat anything diet related and stay away from anything lowfat. This is true to a point! I'm not going to bore anyone by telling you a rundown of my meal plan, but what I am going to do is share my grocrey list and photos of meals with links to helpful programs. If you want to know more about the recipes simply ask. 

As a CFer when it comes to cutting down freezer and processed foods the biggest tip is to simply double whatever you are eating. A healthy lemon chicken is great for your spouse or  "healthy" family members. For you to get the right nutritional value eat two chicken breasts instead of one with extra brown rice and so on.

My main concern when switching up our meals from quick freezer, prepackaged, processed, microwaved meals to fresh, organic, and healthy, "must cook", meals was that is was going to rob us blind. As it was hard enough to pay for food when I was buying the super cheap food. However, I went to the grocery store with the help of a few coupons I was able to buy everything for $150.00 and haven't needed to go back to the grocery store yet. Now, it has been a week and most of our fresh fruits and veggies are gone and I will need to go to the store again soon...

Here is my list for everything in order to make healthy and flavorful fresh fruit smoothies, popsicles, meals, and snacks like I have;

🌽Produce:

1 Stalk- Asparagus

1 Cluster- Bananas

1Lbs. Carrots 

4- Corn on the Cob

1 Large- Cucumber

Garlic (Fresh)

1 Bag- Granny Smith Apples

1 - Grapefruit

2- Kiwi

1 bag- Lemons

2- Limes

1 Large - Onion

1 Bag- Oranges

2- Pears

1 Head- Romaine Lettuce

1- Spinach

1 Box- Strawberries

1 Bag- Sweet Potatoes

4- Tomatoes

1- Watermelon 

2- Zucchini 

🍤Meat/Seafood

1 Carton- Eggs

2 Bags- Boneless Chicken Breasts

1 Pack- Pork Chops

2Lbs. - Turkey Breast

2 Bags- Shrimp

🧀Dairy

1 Lbs. -Cheddar Cheese

2 Large Tubs- Cottage Cheese

6 Oz. -Sour Cream

16 Oz Tub- Greek Yogurt

🍷Beverages 

2 Cartons- Almond Milk

1 Carton- Orange Juice

1 Case- Green Tea

2 Bottles- V-8

Mt. Dew (Yes, I'm still drinking pop)

🍿Pantry

Almonds

Brown Rice

Chicken Broth

Coconut Oil

Corn Starch 

Honey

Oats

Olive Oil (I didn't buy new, I had some)

Peanut Butter

Plain popcorn

Veg. Broth

Wheat Pasta 

🍞Bakery

Wheat Bread

Wheat Tortilla

Now, I did buy all organic, gluten free, and fresh foods. You do not have to do that. I also went to Foodlion, I am not aware of what prices may be in any other place.

If you know a Cystic who needs help buying food to keep them as healthy as possible, as it is extreamly expensive, Foodlion actually has a way of doing just that and all you need is an email address for gift cards.

Also, the Pertzye enzyme has a program for those Cystics without government insurance to help purchase food. 

Staying on the right path with healthy foods,

Sandi 

Insurance and CF

All my life I've been a costly female and I don't mean, because I like diamonds and sushi. Since the day I was born my life has been racking up bills, insurance and Medicaid. Big Pharma has pretty much owned me!

🤖My parents really had no say in the matter if they wanted to see me live and thrive with Cystic Fibrosis.

Luckily, I didn't start getting extreamly sick until I was older, but that didn't make anything any more or less expensive. With this I have to explain, I've only paid out of pocket no more than a $20.00 co-pay each month for my personal medications and maybe $10 for hospital visits. Of, course that changes depending on who our President is and what they think is best for Americans, when having no idea what it's like living the way I do.

☝Which, personally makes me feel they shouldn't have a say at all. Then, I rethink that! Because, without the government having a hand in my health and my health insurance, I would have never made it this far!! I keep seeing things about "I can only get generic meds." Or "You voted for Trump, if you lose your coverage it's your fault."

Generic meds are no better or no worse than the brand name meds. Want to know a secret? They are both made by the same pharmaceutical companies. They contain the SAME ingredients and most of the time it's the doctor who prescribes it that way. Just giving the pharmaceutical companies more money. Period!

💊As long as you are able to get your meds why are you complaining? You should be rejoicing that you only paid $4.20 instead of $20.36 for a 30 day supply of ONE med, when you take over 20 meds a day.

No, those are not real figures, I picked random ass amounts. These, however are real figures.

In ONE hospital stay from July 30th to Aug. 17th my insurance (Medicaid aka Government paid insurance) was charged, $80,154.00 for 18 days! Now, understand that's roughly $4,455.00, A DAY!

For the THREE times I've been hospitalized since moving to SC, Medicaid has paid $190,367.00 and leaving me to pay $80.00 out of pocket. Thank you, Medicaid for helping me live without making me live under a bridge, bankrupt.

☡And NO its not, because of the ACA or Obama. It's been like this for 30 years!

I am not one for numbers and I hate even typing all of them it hurts my head. However, please understand WHY I am sharing this information.

I am terminally ill! I live day to day in fear of what tomorrow may bring. One day I'm good and have all the energy in the world and the next I can be in the ICU fighting for my life. Cystic Fibrosis isn't an easy disease. It isn't something that makes any sense and will stop you on dime for no reason. I am, because of my severity with CF considered permanently disabled and unable to work!

Not all people with CF are like I am. Many are still able to work while managing their disease.

If not for the government paying for my stay and my generic medication, that I'm so thankful for, what do you suggest I do in order to pay this unbelievably large bill? Instead of insulting me via social media?

🕒.............anything yet?🕞..............No?🕤 You got nothing? Me either, which is why I am thankful for whatever plan they have. Anything is better than, nothing.

No matter what this president, the last one, or the next one does, I will still be sick! I will still be faced with these bills and I will still need ANY type of health care they decide on giving me and will be thankful for it!

💸Because, the Kardashian's money, I do not have and honestly if we add up ALL of my hospitalizations from day one plus 30 years later, even the Kardashian's or Trump's personal money couldn't afford it.

Things we can do to attempt to change the costs and not add to the blindness media shares.

1. Be thankful for the breath you breathe and whatever medications your insurance will pay for.

2. Address the Members of Congress on your behalf and the behalf of your disease concerning healthcare.

3. Educate yourself on the current policy and the possible changing of Healthcare and what it truly means for YOU. (DO NOT JUMP ON THE INTERNET BAN WAGON BELIEVING EVERYTHING YOU SEE ON FACEBOOK, including my blogs. I'm not in the "know, know" 100%)

4. Contact your diseases foundation(s) and see what if anything you can do to help your medical worrying. For Cystic Fibrosis, you can find what they are doing to help those with CF at, CFF

5. Finally, don't panic! Don't be mad at anyone who thinks differently than you. And DON'T blame someone who is afraid of losing their medical coverage on who they voted for. That's just hateful and asinine. 

As someone with a terminal/chronic/debilitating disease, just be thankful for today!

Always, Always Smile,
   Sandi
To follow my journey and see if I lose my coverage 🙊 like me on Facebook!

Unsaid Resentment & CF

📌Please, understand this blog doesn't come from a dark place. I'm extreamly happy and so greatful to my health change and still being here, breathing. The people in my life are an absolute blessing. I'd be lost without their love!!!📍

With that said, lets get deep....I can't help but feel like maybe, if the beach wasn't my saving grace and I didn't make it, that I'd be less of a burden to everyone around.

This disease is hell on me in so many different ways. It's also hell on Tyson, my parents, siblings, and friends.

I started to see how complicated being connected to me was, many years ago, but it wasn't until tonight that it hit me! People seem to act as if I'm an obligation and not someone they are excited to have around anymore.

For my friends it became hard to stay in touch. Hard to make plans. Even harder to invite me to weddings and special events. Which in turn broke my heart in so many ways. I knew why and understand you can't plan anything with me. It becomes to be a waste of time.

Two friends came down to the beach on separate occasions and I was so excited to see them and make plans. I either forget about the plans all together, what a great friend I am. Or I, yet again, end up hospitalized. Who wants to visit someone on their vacation in the hospital? I sure as hell wouldn't.

This makes for a stressful friendship. A friendship they wouldn't have if they were just to say screw it and cut all ties with me. Which a lot of my friends have and I don't blame them. If they don't take that route it's just a constant back and forth attempt to get together. Therefore, I'm a bigger headache than I need to be for them.

I've always been such a burden on my family from the moment I was born, even if they never voice it to me or see me as as one. Shit, if not for me and having CF, my parents could have had more than one child together. Instead I screwed that up. How is that fair to a newly wed couple? I basically, forced them to forget whatever plans they had on a bigger family and make me the center of everything, because I was sick.

Which, that just makes my older sister and brother (both from different marriages) very thrilled. A "special" kid needs more attention. Needs more love. Needs this and that and they both got put on back burners. I know a part of them wishes they had a healthy normal sister and not the one they have. I know they've both wished they didn't have a younger sister, because I came in sick, so I "had" to get what I wanted.

With the fear of loosing a child being hell on my parents I was treated differently than they were. I'm pretty sure if I wanted a unicorn, my father would have figured out how to find one. My sister and brother wanted something they had to figure out how to get it themselves, as teaching tools for them.

I'm not helping to ease my parents stress and fear either. By moving eight hours away from them they live in constant fear of that terrifying phone call. Adding extra stress when I'm in the hospital and they can't be here.

I know my mom has prayed for a healthy child and not me, probably a lot of times. I know my dad wanted a daughter that could race, ride, go fishing and do all of the things I wanted to do like a normal tomboy. He didn't want, me. The sick girl who could only half ass anything and was stuck in the hospital every year on my his birthday. I'm sure he thought a few of those years, "damn why can't she be normal, I'm sick of these pathetic hospital partys." Yet, he always smiled and laughed at the drinks I'd put in the sink filled with ice and the streamers I hang from my hospital room ceiling. My mom never said anything about her worries and just gave so much support and love.

I know it kills them inside.

Then we get to my husband. The man that's love for me is easily seen in his eyes and through his speech. That love has slowly turned to the obligation of taking care of his dying wife at 29 and not the ability to simply love me anymore. 

These are the times he should be coaching his sons football team and taking his daughter to ballet. Nope, sorry not if he wants to love ME. That will never happen for us. And it's my fault. I have taken that chance away from him. I know he hates me for it. He will never say it, but he does.

Somewhere between love and health issues we've gotten to resentment. I can see it in his eyes. I can hear it in voice. It's actually there with every action done glossed over in love. I've become more like the worst paying job he has ever had than the love of his life. Well, I guess I'm both now. 

The fact that my death is possible at any given time. I can't get up and be a normal wife any longer. He is left to take care of MY dog. I know he has wished I didn't have her, because I mean I can't walk her, can't really play with her, half the time I can't even feed and water her. I'm sure she's even thought about running away herself. Tyson is now basically expected to cook, clean, work, work odd jobs to make up for me not working, go grocrey shoppong on his own, do our laundry, pack and unpack our apartment every time we move, bathe the dog, clean up after the dog, shower me, clean up after me, and wash my hair. He has practically become a caregiver and not a husband to his wife. He doesn't even get any perks for all of this anymore. Nothing other than my singing his praises. I know he has thought, probably on a daily basis, "Fuck this, I'm leaving". I wouldn't blame him either.

Now, part of me wishes I didn't make it when we moved. For him. To let him have his life back. Maybe he'll find someone who can give him everything I can't. Not be stressed to the max and maybe have someone who can pitch in. Not me, the wife that can barley walk to the car. The wife that washes a single dish and needs 20 minutes to recuperate. I've caught him starting to look at me less like he finds me to still be "the most beautiful girl in the room" and more like he sees the ugly sick woman I see in the mirror right now. Someone who needs his constant care sitting in front of him each day.

Resentment is the only word that describes how I feel, all of these people feel towards me. 

Perhaps, it's my resentment for the disease and not theirs. 

Resentment for stopping our family from growing. Resentment for being isolated, over spoiled, and being the center of attention. Resentment for making everyday a worrisome one. Resentment for never being there when I say I will be or for even befriending me at all. Resentment for taking his life and stopping it at a stand still.

As much as I know the man loves me. My parents wouldn't trade me for anything and love me more than life. I know my friends who have stayed my friends have done so for a reason, why I don't know, honestly. I think my brother and sister are proud of me. I know for 100% they would be there if I ever needed them, and would claim me if asked. (Maybe, not sure about that part.) 

That still doesn't make me feel like any less of the burden, obligation, and resentment in their lives. I just wish I could change that part of this disease.

Not smiling as much today, yet still smiling,

  Sandi

Government Funding Vs. Planned Parenthood

So, I've been trying to decide to post my opinion on here or not. As it really doesn't pertain to CF, but my personal opinion. Then I realized my personal opinion is why most of you follow me. So, here it goes.

If, President Trump, I know here we go, decided to defund, Planned Parenthood it simply no longer has Government funding. THAT'S all! No federal funding will be going into Planned Parenthood, your funding however can!

He isn't going to banish the organization from the planet. He isn't going to find the Elder Wand and magically, Planned Parenthood is gone! That's not how it works.

For those who support, Planned Parenthood it's not the end of the world. I tell you, because I know. My disease, Cystic Fibrosis and the Cystic Fibrosis Foundation is also not federally funded by the US Government.

Roughly over a 100 Cystic Fibrosis patients die every year. With most of those numbers belonging to children under 18.

To most people that 100 plus people is a small number, but to us they are family and friends. They are bonds that no one else can form with us, because no one else understands what going through a disease like CF is like.

Those deaths are a small glimmer of hope inside of us that slowly fades away. The thought of a cure gets smaller and smaller inside our minds watching another Cystic die at the hands of a disease that is not funded by the Government. That way we can get the answers, lung transplants, and medications we need.

The Cyctis Fibrosis Foundation, understands these loses and is helping aid us with new medication and treatment research. Helping us with the costs of our medications a lot of us can't afford. Helping with pre-natal CF screenings and trying to make it a mandatory pregnancy screening for the disease. They help potential parents with information about testing for the CF gene. They are helping to ensure we have the proper information and resources for our disease. All of which they are NOT federally funded for.

We have to get funding through our own CF community. From people who want to see a cure. People who support the disease and those of us who fight with it daily. All while we petition the government over and over for funding and keep getting turned away year after year.

Our foundation and disease isn't effecting enough people in the eyes of the government to pay attention to it alone.

While you gather enough women around the US to fund planned parenthood on your own. Well enough for the next 4 years for that matter, a baby is being diagnosed with Cystic Fibrosis. Teens are being hospitalized missing out on critical developmental and social events in their lives. Twenty year olds who have fought their entire short lives to make it to 20 are being told they are dying with smiles on their faces. Two CF patients, that I know of, died on Saturday due to complications of Cystic Fibrosis. Both were under 30.

We are not walking around throwing fits, littering in the streets, wearing lung or Pancreas hats. We are writing to our congressman. We are taking bills to capital hill. We are holding indivual CF walks to RAISE money on our own to help fund the CFF and further research. We are hosting gallas and making something happen for ONE cause. Life!

With government funding for both CF and the CFF so many things could be possible, but right now we don't hate it.

We didn't chose to be born sick. Our genetics betrayed us, and we are fighting against it, without federal funding for our organization!

If we can do it, trust me, Planned Parenthood is fully capable of operating without federal funding!

This I promise you,
  Sandi

For more of my opinions, CF journey, or education on CF follow me on Facebook!

Hydration & CF

We're always told to stay hydrated, but it's not always that easy when we get busy. We tend to forget the simplest things like drinking enough water or even to put on lotion for the day.

🐡When you have Cystic Fibrosis, it can be difficult to tell whether or not you are truly dehydrated or if you were just having an issue related to our sweat glands making us lose a lot of our salt. So, it is tricky to tell if we are in fact, dehydrated.

⚫Here a few ways to figure out if you're starting to get dehydrated and what you can do about it.

The first signs are simple, when you are talking to someone and all of a sudden it seems like you're eating sand, that's a MAJOR tell to take in more water. If you're thirsty use common sense and drink something hydrating.

☡Pop (soda or coke depending on where you are from), alcohol, and energy drinks will all dehydrate you.

Chapped lips and dry skin are the two signs that are the easiest to see and feel when it comes to being properly hydrated. When you notice either issue it normally isn't a severe sign of dehydration and can be corrected with moisturizers and a few extra glasses of water or a nice cucumber salad.

Not so common signs of dehydration, that i tend to get to are weakness, dizziness, fainting, swollen fingers/hands, stiffness, confusion. All of these separate from one another can be many medication side effects, but if any of these symptoms come together with nausea, vomiting, and or diarrhea you need to grab a watery snack, like watermelon and Gatorade.

🏳Even if it is something else healthwise sneaking up on you, treating yourself as if you need more H20 won't harm you. It will actually help you, no matter what your underlying issues are.

A visual way to stay alert is by watching your urine. It should stay a pale yellow, darker urine is a sign of needing more liquids.

🚑Of course if your symptoms continue to get worse, you have a temperature over 101°, or your breathing gets more difficult ignore me and get to a hospital. Please, do not take dehydration lightly, as severe dehydration CAN kill you. I'm not saying this is going to happen if you're dehydrated. So, don't panic when you get dehydrated. Just take it seriously.

Most of the time when you eat you don't think "I wonder how much water is in this meal". Just remember that fruits and vegetables contain 80 to 98 percent water. I know, they aren't as tasty as chips and chocolate.

🍉Foods containing water are watermelon, strawberries, lettuce, cucumbers, tomatoes, beets, carrots or celery. Adding them to a meal or snack is one of the easiest ways to improve hydration without drinking a ton of water.

We don't always love water as it has no flavor and we love flavor. Plus, if you're me water has to be almost frozen cold for me to drink it. There are several things you can drink that will keep you hydrated and have full flavor.

☕Starting with Gatorade or POWERade, fruit smoothies, skim milk, coconut water, and some even say coffee is a good way to stay hydrated (not a whole pot of coffee.)

Rule of thumb with staying hydrated is roughly 20 cups of water a day. This does include the water contained in foods and the water in your system already. So, it's not as much as it sounds.

💦Now, that I feel like Bobby Boucher, go grab some high quality H2O and stay hydrated.

Made of water,
  Sandi

For more information on Cystic Fibrosis, my life, and health tips follow me on Facebook.

Dreadfully Ashamed......

Odd, how hearing and song can inspire you to share your troubles, your struggles, and your deep dark secrets. The key line in the song literally is, "My drug dealer was a doctor" and man do those words ring loud and clear. So, here's to you, Macklemore....

As I sit here in tears contemplating if I should share this or not, I'm faced with the fact that I swore to be honest, be true, and be raw with this blog and all of you. When in fact I've not been honest with my damn self for almost two years and it's killing me. I try to justify and say, "You really were in pain", "you ARE terminal", or "It was prescribed by a physician they know what thy are doing." Right?

When in reality, you can't be sure that it's YOUR best interest they are looking out for.  

💊I've never done drugs that were illegal. I've always taken medication from a doctor and that was why I was justifying my issue. It wasn't until I almost killed myself in April, that I realized just how addicted to IV Dilaudid (Hydromorphone), I really was. It wasn't until I stopped taking it and didn't have it on hand that I knew I was an addict and didn't come to grips with it then. Yet, every time I heard the name of the drug, I get chills and have the dark side of my soul creep out of my head saying how badly I'd like to have my hands on a dose.

📍 I look back and see all the pain I was in and the horrible things it put me through, yet I know if I was hospitalized I'd ask for a dose or two. 

I know my family knew what was going on, but I don't think they ever knew how bad it really was. Well, until now I guess. The only person who saw me in such a bad state of mind was Tyson, and I could never imagine what he had possibly going through his head. 

❤He is a amaziny man to stand by my side and hold my hand through it all. I'd hate to think he thinks half as bad about me, as I think about myself.

I'm so hard on myself now looking back, yet I got out of the worst parts of it. The cravings are gone, to a point. I no longer shake, jerk or sweat for no reason. I no longer search for ways of making sure my prescriptions were filled. So, when you think about it the worst part is over and the hardest part has begun.

I was to a point that the act of rocking back and forth on my bed, dripping from sweat yet shivering from being so cold, became a feeling I was getting used to.

💊 I'd cry and scream searching for ways to get Dilaudid or ANY pain medication. At one point I searched high and low just to have pain meds into my system, if my script was out too soon. 

I thought about contacting the people who I knew were into hard core street drugs after doing search after search on Google, of other things that are able to give you the same feeling that Dilaudid did. 

🏳Thankfully, I never did act on that thought. Mainly out of embarrassment and the fact that I can't mentally do anything with needles.

Maybe it was my way of dealing with everything going on. Maybe I was trying to cover up a fear of dying young. I know after a while I wasn't needing pain medication to mask or fix my actual physical pain. I mean at this point my pain was/is just like breathing. 

🖑🖐After all they go hand in hand. So, I know I was taking the medication for a mental escape.

Escape from what I'm not 100% sure, but an escape regardless. The funny thing is no amount of medication can take you out of reality, especially when that medication wears off and you no longer have it. Then all that hits you is regret, hate, sickness, confusion, and sadness. 

People ask me all the time what has changed that has my health improving so much. Really, until right now, I've not been completely upfront. I know that 70% of it is in deed the move to the beach and the salt air. However, I'd be willing to bet that 20% is the fact that I literally gave myself a heart attack, via an air embolism, from IV diluadid TWO days after being in SC. I then stopped all pain killers at home and haven't touched them at home since April 2016! I'd say it's safe to say the other 10% was getting away from the hospital where they and I quote "were waiting for my lungs to just give up". I've also been using the essential oils "breathe blend" and lavender to stack the deck, I believe that would be the full reason for my insane health change.

💦So, salt air from the ocean, getting away from a toxic hospital system that literally gave up in my health, and stopping the narcotic dependency and addiction. All while adding oils to help with stress relief, which lets face it I need!

I was disgusted with myself and my choices. Ashamed, disappointed, upset, lost, and hurt to be honest. I felt like I was weak to allow myself to stoop to such a low. 

When in reality, I was being pumped full of this pain medication by doctors when the only thing they cared about at the time was IV Benadryl and not wanting me on THAT, really?. When my mother would mention to the doctors they would say, "she's ok, we will address the issue if it gets bad." Yet, they never did address the pain I was having either mental or physical. They just kept increasing the Dilaudid dose and not really doing much.

It wasn't until it was too late and I was already addicted that they gave a damn about my well being vs. the addiction. So, once I was hooked on Dilaudid they decided to then just cut me off from the medication they have been pumping into my veins constantly for about a YEAR and a half. In hopes I'd give in and go to the Suboxone clinic. Making life very difficult and leading to be getting sloppy causing an air embolism with my last IV dose.

In my opinion it was to pad their wallets a little more and with state and insurance money to boot. 

💉Why they ever sent me home on IV pain medication I'll never understand. Maybe they had an agenda, maybe I'm reading into it wrong and it's all on me. Either way something needs to change. These drugs are killing so many people, ruining lives, and destroying families. 

No, the drug isn't solely at fault it's a tango and without the prescriber and the patient the drug is harmless. I take responsibility for getting into it that deep. I am also taking responsibility for trying to help those in my situation. 

Sadly I know I will most likely lose respect and followers with this blog. I know my family will probably think less of me. However, I feel that this is something that needs to shared.

Thankfully, when I gave myself that air embolism I was able to get the EMT'S to me in time, but not before the right side of my body was paralyzed and my mind was gone. I was hollow and completely numb. I could only think two things over and over in my head at that time which was, "I'm going to die" and " For the love of God, Sandi move your arms, kick your legs, or left your head". And I simply couldn't. This went on for a good 15-20 minutes, that really felt like forever, until help arrived and took me to the ER.

🍀I was able to realize just how lucky I was and I was able to stop taking the drug cold turkey afterward. Nothing like the feeling of a drug overdose mixed with a heart attack to knock some sense into a person.

 However, alot of people aren't that lucky and these drugs that doctors push and push, kill so many people.

Which, is why I need to share this. I need to help those who need it and I need to keep pushing to accomplish all I can in this life. As I have been given so many extra chances and I know that I need to give back in a big way.

Dreadfully Determined,

   Sandi 

For a few tips on how to notice narcotic dependency follow me on Facebook. 

Babies, Emotions, & CF!

Where I am in my life I long for things I don't think I'll ever have or do again and that's normal, but only ONE thing stands out above the rest is what I'll never have.

As I sit here and celebrate all of my friends and family members getting pregnant and having baby after baby. I cry to myself. I sob like a baby as I'm writing comments like, "OMG I'm so happy for you." When I want to write "why you and not me?", Why can't it be me with a baby shower and a bump collage?", Or "It isn't fair."

It's so bitter sweet. I'm genuinely am happy for them and can't wait to celebrate with them, but inside my body is screaming at itself. Screaming at my health, at my lungs, whatever God will listen, and at this curse that is Cystic Fibrosis. Inside my mind if you could hear the thoughts I am thinking you'd want to call the cops for a domestic or maybe have me committed for these screams that are so silent, but so powerful.

Growing up I knew I wanted to wait until I was older to have kids, because honestly modeling and getting out of Fairmont, WV was all I ever wanted. So, when I was in the 18-24ish age rage I didn't even think about it and thought wearing protection and all of that was working for me.

🔨Then the hammer dropped and tada sorry Sandi, you'll never be a mommy. Forget the idea of it all together, because it won't happen. At least not for me. (CF and Fertility)

Why not? It's simply really. I'm part of the Cystic's whom can't conceive naturally. Also, I'm not made of money and I didn't marry a bank. The only way we could have a baby is by paying a ridiculous amount of money for someone to create my child for me in a laboratory and well that's not going to happen. Adoption is also alot of money along with a grueling indepth check on us and with my health standing as is, I'm probably not going to be approved to adopt.

💰If I were rich I could literally adopt any baby I wanted from any country and they wouldn't bat an eye.

Sometimes I want to smack those who take advantage of being able to get pregnant at the drop of a hat. Or those who get pregnant and neglect or ignore the child. All I can think in those situations is, how dare you? I just don't understand how selfish some people are and not realizing what they have. What a precious gift they have and they simply take advantage of things.

At my doctor's appointment the topic was yet again brought up to discuss and all I could do was tear up and talk about how badly I wanted to start a family. It rips my heart completely apart. I never knew someone could ever want something so badly that it physically hurts so bad. Honestly, it pains me so deep inside to think I'll never hear the voice of a tiny child calling me mommy. I'd do anything in the world to somehow be able to make it happen.

💔Broken hearted I wait to for the day things will change for me. I guess it's true when they say you can't have it all, but I'd think that this disease was hell enough for one person. I'd give back all of my accomplishments and every achievement I've ever made just to hold a beautiful child in my arms to call our own.

Sometimes what we want isn't always what we need at that time. No matter how heart breaking it may be there is a reason.

Maybe one day,
   Sandi

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Numbers Can Mean ALOT!

97 and 30 seem like random pointless numbers, but not to me. To me they are two of the happiest numbers that I can count to at the moment and I hope that I can keep on counting up.

It's been 97 days since I've fallen asleep to the sounds of a hospital bed and an IV pump. 97 days since I've had to call and tell someone my name and room number before I'm able to eat. 97 days have passed without me needing to call a nurse for extra treatments. 97 days where no one comes in my room in the middle of the night to check the pulses in my feet and wake me up to ask if I need anything.

All the while it has also been 97 days since I moved from WV to SC! Something if you would have told me 97 days ago, would make me feel ten times better by doing nothing, I'd never believe you!! Yet, here I am feeling like I did in college over 8 years ago before I was this sick.

Now, within those 97 days it's now been 30 days since I've needed to carry around Raymond, my oxygen tank in over 2 years. 30 days without pitty looks and stares from strangers as I walk by. 30 days WALKING around Walmart without needing the scooter. Now, I'm still needing to push a buggy to get around, but I'll take that over the scooter. It's been 30 days without hiring the buzz of my oxygen machine while I'm trying to fall asleep and 30 days without choking myself on an oxygen tube leash!

Of course these two numbers are accompanied by two other numbers my FEV1 (lung function) when I got here 97 days ago was at 17% and now 30 days ago my FEV1 (lung function) was 24%. I can not wait until my next doctors appointment where I'm hoping it has gone up even more.

💥With all of these improvements and numbers I'm throwing around you would think I'm on one of the new Cystic Fibrosis meds or did the steam cell thing, but you'd be wrong. Within the time we've lived at the beach I've done very little different than what I did in WV.

I've added small amounts and I mean maybe 3 drops once a week, of the Detorra "Breathe" blend  essential oils, to my bath water. I've upped to amount of hypertonic saline from once a day to twice a day and I've gotten my meds on a better working schedule. The biggest thing I've come to realize that did change, was after about two weeks of living here I slowly stopped taking prescription pain medication. I noticed I wasn't in as much pain here as I was in WV for some odd reason. Which can be a huge reason and explanation as to why the turn around, but I'm not sure to be honest.

💥To me whatever it is the ocean and the salt in the air, magic, be it a miracle, someone watching over me, or whatever it may be I'm so thankful for it! I wish I knew what it was keeping me from getting sick and needing oxygen, but I simply have no clue!

Hoping it just gets better,
  Sandi
For more information on CF and my new health follow me on Facebook.