A Letter To My Husband

Tyson, my rock, my love, my man;

  I know these past three years have been hell on you and so much stress that no one should have to go through. Only as humans do we chose to put ourselves in stressful situations all for love.

You are so much more to me than my husband, my friend, or my rock. Tyson, you are so strong, smart, creative, and loving. Most of all you are here for me when I need you to be, when others would go running for the hills you have stayed by my side. Now that is not to say you are always going to be happy throughout the whole thing. I know you can't stand the medical field and how it works and the run around before anything medical is started, done, and finished. It is never an easy fix like we would all like it to be. I thank you for that! I thank you for loosing your cool when doctors change their minds and you show me that you are human and you care for me and me alone!

I know when I am hospitalized you are now handed a double job of going to work and maintaining the house as well as taking care of our furbabies wants and needs. Plus the added weight of am I ok or when am I going to be coming home to end the chaos and try to set things back to normal.

I want to thank you for taking my hand in the silly life of mine. A life that doesn't promise a tomorrow, or even a later tonight. Knowing at the drop of a hat I can be at my lowest of lows without sign or warning. You are there for me to cry, scream, vent, laugh, and sigh when relief finally comes.

I owe you so much more than a silly letter, and when I get home, I would like to treat you to a special "Husbands Day" to where I can shower you, pamper you, and celebrate you for all that you do for me and not just me but my family as well.

Being in love with a sick person is not really the ideal relationship but once you find the person who doesn't care what happens as long as they are by your side is the most important thing in the world. The best feeling anyone could ever ask for.

This life. The life of a Cystic, isn't for everyone. Some men would run and hide never to be found again when faced with the problems we have had as a couple. Not you, you stay right beside me bickering back and forth and only really looking out for one another.

I love you so much Tyson and I just want you to know how much I appreciate, love, and cherish every thing that you are, say, and do!

Thank you for you! Thank you for your craziness, your worry, your OCD, your sweet side, you thoughtful side, you hard side, the part of you so dedicated in taking care of me, and your hard working side. Thank you for ALL of you! Most of all, thank you for being here putting up with me through it all!

Your loving, appreciated, and lucky wife,
  Mrs. Tyson Dick

Hospital Food

Being hospitalized for days and even weeks on end the food is terrible! Being that we need extra calories, eating in the hospital is normally hard and practically hell and ordering out can get EXPENSIVE. However, there are ways to get around the crappy food well ok not really "get around it" but make it better and less flavorless.

Mind you, some hospitals are lucky enough to have a Subway, McDonalds, and even convenient stores in them. Which is really nice I went to a hospital in San Diego that had both and a Starbucks and it was heaven.

For those of us stuck in a regular hospital with regular hospital food here are a few things to help you make more promising meals. Keep in mind for this to work you must be on a CF Diet that includes extra portions and ordering as often and as much as you want. Let's just go off of my menu here at WVU Hospital and some things I have put together.

Breakfast - The most important meal of the day or so they say! After a while the cereal, rubber pancakes, and eggs just get to be redundant. You need to think outside of the menu and make yourself a better meal.

★Cheerios, strawberry yogurt, and sliced bananas make for a yummy and unique breakfast that you would never think to put together while sitting in your hospital bed. Simply ask the nurse for an 8oz drinking cup, which you most likely already have with a water pitcher. Cut up the bananas, then layer the yogurt and cheerios and you have a simple parfait!

★Make your own breakfast sandwich on either a biscuit or toast by ordering scrambled eggs, bacon or sausage, and a slice of cheese. Put it together and you are good to go without even doing much.

★Grapes, cream cheese, and gram crackers make for a yummy and simple snack that almost every hospital caf has.

Who doesn't love the comfort food of tomato soup and grilled cheese? I know I do, however, not every day all day. So get creative with the food options that you do have.

★Cottage cheese and peaches (fruit in general) can be a great start to any lunch or brunch and is very easy to throw together.

★Ordering individually get chicken tenders, a dinner roll, swiss cheese, and a slice of ham and make yourself mini Chicken Cordon Bleu sandwiches. Something that seems so complicated is actually just as easy as ordering the ingredients and putting it all together.

★Grilled chicken with no bun, just the chicken. Provolone cheese, pasta sauce, Parmesan cheese, and a little salt and you have yourself a Chicken Pareman Dinner.

★For a fun little fatty snack order some fries, shredded cheese, bacon, and sour cream and make loaded cheese fries. So yummy and so easy. You can do the same thing with a baked potato.

★Take pretzels and break them into an ice cream cup and have a sweet and salty dessert that is effortless.

Now the list can go on and on however, I think you get the gist of what I am getting at. Don't make the hospitals bland and boring food make your long stay and worse. Just think about what you want and what the individual ingredients are and then order them. Yes, normally the person who is taking your order will get confused if you start ordering random things but oh well!

Eating yummy,
  Sandi

For more tips, food, or just me and CF like my Facebook! 

Government assistance

It is a proven fact that people judge others. More importantly they judge based on the fear of the unknown.

I have noticed a lot of people complaining about how government money should be spent regarding food stamps and welfare benefits given. So here is my run down.

Close your eyes and image the woman standing in line in front of you at the grocery store. She is young mid 20's, dressed very fashionably, well groomed,  manicured, eyebrows waxed, hair just dyed, and sporting all of her tattoos, large diamond engagement ring and a thick diamond wedding band on her left hand. Always laughing and smiling.

How did you picture her?
·A young wealthy woman?
·Or is she's married with few kids?
·Maybe a 20 something girl just trying to figure out life without her parents help?

Then see needs to purchase her items. She pulls out her EBT card along with her Direct Express card. That has her government assistance money loaded on it.

Now, what thoughts do you have? Do they change to something like this?
·"There is nothing wrong with her?"
·"How rude for a young person to take a handicap spot just for a shorter walk to the door"
·Or my all time favorite "I work for money what do you do? Nothing and just get money handed to you because you're to lazy to get a job."

★I would say by now you're irritated and shocked that YOU work hard for your money and can't eat as well as what she just bought and think there should be a limit as to what foods she should buy. You're angry right?

You will most likely never see that woman again. You'll go home and post something about her on social media and be done with it. Me however, being that I am that woman I mentioned above, will see "you" everywhere I go. Different faces, ages, races, and society standings but nevertheless it's same person.

I will always be judged, because the cover of my book is in mint condition. My pages are torn and tattered some are even missing. A lot of bloody and nasty chapters that no on would want to even read are things you can not see when you are judging me.

Cystic Fibrosis is an invisible disease however, what no one outside of the CF community understands is we are in need of government assistance in one form or another. I have not been able to hold down a job due to my health getting worse, since I was 23. I am now 27 years old. Mind you I worked from the age of 15 and at times held multiple jobs and college classes. I loved working and earning a living being completely independent. So trust me I am not happy using government assistance. However, without it I would literally be homeless, naked, and most likely dead!

I have one medication that keeps me alive daily that costs over $5,000 per bottle alone. That is just ONE out of the 30+ pills I need to survive. Along with rent, food, and bills. I am not sure where any of those judging me work but I can almost guarantee that you wouldn't be able to afford all of that at your job without some type of assistance!  I also know that insurance from any job in WV will not cover my medical 100%. Not to mention food oh Lord my food costs. Having CF I do not absorb food correctly forcing me to eat 8,000 caleries a day. Yes, eight thousand caleries a day!

So, you see I need assistance!

I need to be able to live life as well as being sick. As it would be ridiculous to just let my disease consume me. Ask yourself what you would do? Would you stay in bed and not do a thing because you were born "sick". I highly doubt it. I refuse to live a horrible life just because I was born with a horrible hand in life. I worked HARD when I was physically able to and deserve everything I have in my life!!!!

So, next time you roll your eyes, get irritated, and think, "you work so hard for people like that to get assistance", please think about the fact that you don't know my story or anyone else's for that matter!!!!

Not Ashamed,
  Sandi

For more CF info or my life with Cystic Fibrosis please like me on Facebook

💎Update Blog💎 Memories & CF

                 💎💎💎💎Update💎💎💎💎

In WV they weren't really sure what to think of my memory issues. Luckily, the doctors here do know what they are doing, which sucks in a way. 

I am just learning that antibiotics and a couple other meds that I've been on since, before I can remember has a crazy side effect that us unbelievable rare. 

💣Of course its rare, wouldn't ya know I get that side effect. I mean why not?

Anyway, it's not only one medication but a combo so, I wouldn't worry too much about it happening to you. These meds have my long and short term memories fading away. From what I was told it will only being getting worse. 

💭If you ask me if I remember something 9 times out of 10 I don't.

My solution is to start a memory journal and I really, really need your help. If you have memories(good or bad) that stand out and I'm in them, please message me and tell me what it is so, I can include it into my memory journal. If we have photos together send them too. Please, don't keep my past from me by not helping me. 

Sadly, I've always been very nostalgic and I'm not sure how that's going to work now. 

       🐡🐡🐡Old Post About Memories 

I often find myself staring blank into a wall when someone says "Do you remember that?" "We had so much fun back then" or even "You were such a bitch I hated you". Sometimes I lie and just agree with people instead of admitting I simply do not remember.

I am not 100% positive on this, however, I do think that Cystic Fibrosis, medications, and a slight form of PTSD is to blame. Up until college if there isn't a photo documenting an event, I find it hard and almost impossible to remember a lot of things.

★Which is why I now take photos of everything no matter the reason, day, or event. If not I would not have any memories at all. Even some events from Hooters and California, if there wasn't a photo it didn't happen. I do not have a memory of a lot of things that I should. I have done so much to retrieve photos from my friends, Hooters, and California and I come up short. Although at least one photo if not more was taken EVERY day I can't seem to find them.

Stories like "When I first met you in kindergarten, you hit me with a Fisher-Price frying pan" or "Do you remember asking me, If you were adopted don't you have to leave?" It honestly breaks my heart that I do not remember these things. I have to just shake my head as if to say that moment wasn't worth remembering and I feel terrible and cannot control it.

I will say I know and am the first one to own up and admit I was, well a bitch and even a bully when I was in school. I know it and understand that I still can be a bitch if need be but I was also young, stupid, and unaware of what my words could cause.

★I do know about me making fun of someone for the number of barrettes in their hair in elementary school. Only because I have heard the story a few times do I "remember" it. I personally do not remember saying it at all. Although I know what was said and why. Honestly, it hurts my heart thinking about it now, although it was over 15 years ago.

👭👬👫I really only remember talking to roughly 4-6 different people on a regular and none of which were in the same clique. I apologize I don't remember more people.

I guess the issue that I am coming up against is now is I am slowly getting sicker needing more antibiotics and it seems to happening more.  

A memory, time, friend, or the moment is lost and I can't bring it back by myself.  So I am asking you to help me remember. Please, if you have a good or even bad memory of me, please share it with me. Send me a message on FB if you want. Even better if you have a photo that may have 10 inches of dust on it, please send it my way. I'd love to copy it and send it back.

★Luckily, with social media this should easy to do and I can share in the memories with you instead of being ashamed that I just don't remember.

Forgetfully remembering,
   Sandi

For more about me and my journey follow me on Facebook!

♥I honestly do not remember any of these photos only the stories I was told about them. The Kennywood photo, I have absolutely no memory or clarity of.

My bucket list!

We all see movies where people who are sick or old have a list of things to do before they die. Basically because out of the entire population those two types of people are in tune with the reality of death while the majority of healthy younger people believes they are unsinkable so to speak. I have been giving it a lot of thought and after making most of my childhood dreams come true, it's now time to attempt to make the more obtainable adult dreams come true.

So here it goes, I know a lot of people read my blogs so if anyone knows how to help me achieve these goals don't hesitate to assist! ;)

♥Be in two places at once. Yes, it is possible if you are a chic flick lover and can go back to Mandy Moore's movie "A Walk To Remember"
♥The upside down kiss in the rain. Nothing is more intimate as kissing in the rain, but there is nothing as cute, sweet, and gushy as that of a Spiderman kiss! 
♥Be a member of the mile high club. Yes, that may be a little TMI and I apologize for any kiddos who now need an explanation, however, it is something I hope one day it will happen. lol

Attend Beauty School

Own my own salon named "Hair Candy"

♥Own and operate my own old fashioned candy store and name it "Sandi's Candi's"
♥Live anywhere but WV again. I miss the beaches of NC and CA. The big city living and bright lights. I want that rush hour traffic. Yes, I am insane. 

♥Visit all 50 states

♥Go to as many beaches as possible
♥To give birth to my own child, which may never be possible, but it is on my list.
♥To at least walk a mile on the AT (Appalachian trail)
♥Meet BB King. I know what 27 year old wants to meet BB King? I do! I want to have a photo of myself, him and Lucille!!
♥Be on the cover of Rolling Stone. Ok, ok, I will settle for the cover of any magazine sold on newsstands nationwide!
♥Have a song written about my life and struggle and possibly sang by George Straight. That may be a hard one to accomplish.
♥Go to and be invited backstage at a WWE event.
♥Be known for CF all over the world. Even if it is simply my "Always Smile" motto.
♥Celebrate our 5 year wedding anniversary. Which means July 19th, 2019
♥Have my family be proud of me. I mean legitimately proud of the person I am.
♥Help others no matter the situation.
♥Be on a talk show! Preferably Ellen for CF awareness.
♥Somehow I want to sit on Abraham Lincoln's lap in Washington, D.C.!  Yes, this is a fairly impossible feat, however, I can somehow make it happen.
♥Ride in a hot air balloon.
♥Have a picnic in San Francisco.
♥Make it to Italy to see where my family comes from. I want to get a taste of my Italian heritage.
♥Stay in a cabin in the woods somewhere with my man and my dog for an entire summer. Just the quiet,  beautiful scenery to relax.
♥Become a Best Selling Author 

♥Be able to be a foster parent.
♥Be covered in tattoos, some meaningful and some totally pointless.

♥Get my 65 Roses sleeve tattoo.

♥Become a Harley mechanic. Which is a little over a year of schooling.

♥Live happily ever after!
★Continue to prove the doctors wrong.

Now, as most of you know I had a similar list with different things I wanted to do from a young age and was able to make them all happen. I know with my personality, way with words, and the will to keep going even when I am told no a hundred times, I will make this happen.

☆Already accomplished!!

♥Graduated from High School. A dream from a very young age.★ACCOMPLISHED in 2005

♥Go to college! A dream from a very young age. ★ACCOMPLISHED at age 18 with a sorority kicker. Alpha Sigma Tau #141!

♥Work at Hooters a dream I had after making a bet with my father. ★ACCOMPLISHED at the age of 20.

♥Sponsor A Make A Wish Kid to Hawaii. A dream I acquired after I myself was sent to Hawaii at age 16.- ★ACCOMPLISHED at age 26!!

♥Work for the Playboy Mansion! A dream from the age of 17 - ★ACCOMPLISHED at age 24! 

♥Model on a runway in Hollywood, CA. A dream from the age of 10. ★ACCOMPLISHED at age 24.

♥Model in LA, California. A dream from the age of 10. ★ACCOMPLISHED at age 23.

♥Be published because of modeling. A dream from the age of 10. ★ACCOMPLISHED at age 16. For several publications, advertisements, and calendars.

♥Live in California -★ACCOMPLISHED at the age of 23.

♥Meet several famous people. -★ACCOMPLISHED at the age of 21 and counting.

♥Tell my story to whoever will listen.-★ACCOMPLISHED Everyday!

♥Change at least one person's outlook on life. -★ACCOMPLISHED!

♥Have a loving man, who supports even the hospital stays. ★ACCOMPLISHED at the age of 24, on September 16th, 2011! 

♥Start a Non-profit organization for ALL Rare and uncommon disease awareness. A Dream from the age of 18. ★ACCOMPLISHED at the age of 25, Ribbons Of Hope!

♥Be published in tattoo magazines. A dream from the age 16. ★ACCOMPLISHED at the age of 26 and counting.

♥Be on the cover of a magazine. A dream from the age of 10. -Work in progress.

♥Become a nationally published writer. ★ACCOMPLISHED

at the age of 26 and counting.

★Take the time and write a list of goals. Start out small accomplish them and then aim big. Shoot for the rings of Saturn because the stars are too easy to see.

Always Dreaming,
  Sandi
For more information on CF or my journey, please like me on Facebook!

My first bucket list-ACCOMPLISHED

Smokers & CF

I have been slacking here I have so much going on. However I need to vent and this is more of a personal CF vent. Hopefully I can touch anyone who may be in my position.

My parents, siblings, nieces, and nephews all smoke. Most of my friends smoke, my soon to be husband (in 20 days) he smokes cigars. I have no problem with it at all.

The problem I have with it is when people will look at me and treat me like a four year old who did something wrong. Then tells me to go to another room so they can finish their cigarettes. 

NO not anymore!

DO NOT INVITE ME IF;
     ♥I do not warrant that small length of time for you not to smoke to be with you. Just because you will NEED a cigarette.
    ♥The entire time I am near you and the wind blows you panic acting like your hurting my lungs. In reality that really bothers me.
    ♥If your first thought was "Damn it Sandi is coming so I can't smoke that pack in an hour like I would want to."
  

DO INVITE ME IF;
   ♡You care enough to wait for the next cigarette until after I leave your house.
   ♡You are curious and ask, "Hey Sandi is my smoke bothering you?"

My answer will be a laugh and say no you're ok. Why? Because I am 27 years old if I physically do not want to be around smoke. My lungs and legs know where the door is! I do not need to be talked to like a 4 year old and ordered around as to where I should go.

When you act like that it only makes me feel like you do not care about me at all. The only thing being cared about at all is your nicotine fix. Then simply leave me out of the party. Why show me around and not even be around me because of cigarettes? Doesn't make sense to me at all.

You would think I would be used to it my parents smoked my entire life. In my room, house, car, everything. Of course that was an older time lol. It never really bothered me to a bad point. It is more of the actions or words being said that bothered me more than someone and their addictions.

I guess it makes me feel like I am hindering their smoking experience.  That will only make sense to another Cystic. Lol

No, Thank You,
  Sandi

    

15 CF Ugly Truths

May is Cystic Fibrosis Awareness Month and the things people don't tell you about CF is what this blog is going to be about. Please note everyone is different not all CFers feel this way or have the same issues!

1. Cystic Fibrosis causes horribly bad smelling farts. Some that will bring grown, harry, bikers to their knees and clear a room.

2. All day long we have thick mucus coming out of areas we never knew we had. Ears, eyes, lungs, nose, poop, and even naughty parts.

3. Sex is very difficult, time consuming, complicated, and sometimes you need to wear oxygen just to attempt it. Thankfully, once you find the one, they won't mind.

4. Walking for long distances is almost out of the question at times. Most of us, however, are too stubborn to admit it.

5. Talking about CF for the first time with someone new is nerve racking and most of the time we make it sound less like a horrible, body controling, death taking disease and make it sound like a sweet puppy nice and fluffy.

6. The words "poop" or "stools" are a normal conversation for us! No, it doesn't bother us when people say it and rarely do we laugh at that word.

7. Eating a lot of cheeseburgers, pizza, and fatty foods looks like a nice thing for healthy people. The reality is shoving so much food down our throats is horrible sometimes even nauseating.

8. EVERYONE looks at you like you're a horrible person when paying for things with an EBT card or an SSI debit card. Why? Because people are judgmental assholes who see a "healthy" person doing anything in life and have to look down upon what they do not know!

9. Sometimes we can't hold it in and leave greasy stinky poo marks on couches, in pants, and in cars. It is more embarrassing than anything but it is something that just happens and you bear to roll with it.

10. Growing up we get made fun of and called "anorexic" just because we are small and can't absorb anything.

11. We normally know every nurse by first and last name. Most are even friends with us on FB. We can also run most medical equipment, pronouce all medications, and talk a nursing student through their day.

12. Being that we produce so much sodium, showering after a hot long day is the worst. Water washing away the massive amount of salt off of our skin makes it feel/taste like we've been in an ocean for a month.

13. Getting enough sleep is very difficult resulting in canceled plans a lot more often than we wish. It is almost a party just to get ready to go somewhere. Then, once you get to where you are going, you are ready to leave and go to bed.

14. Multitasking should seriously have a gold medal as we can function 100% while doing nebulizer treatments. Text, chat, FB, twitter, meds, homeworks, and the neb at the same time. Yep, golden!

15. Most of us don't really see ourselves as "sick" so we do not act like it. We never want pity or sympathy for having CF, but normally never say when it bothers us.

I think that is plenty I am sure I could keep rambling on and on for hours, however, I think this is fine.

The ugly truth,
   Sandi

For more info, tips, or my life with CF follow me on Facebook!