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