Letter to myself before getting sick…

Breathe, Just take a deep breath.


Life is about to change real quick for you, things are going to be completely out of your control but you will have your family and amazing medical staff/doctors with you every step of the way. 

You will understand so many things after you’re diagnosed with this illness, Why your legs would fall asleep so much, why it seemed like you had a stroke in middle school yet they said it was “Anxiety”. Why you couldn’t breathe, or why you had those huge bruises on your legs.

You will learn to live a TOTALLY different, scary life. You will get the hang of it, I’m not saying it will be easy. You are going to ask yourself and God why you! You will be frustrated, depressed, you will get to lows you never knew you could get to. 

It’s going to be you fighting to live- TO LIVE. You won’t be afraid of death anymore, but you will be afraid of leaving the ones you love behind. Your family will be told in a few occasions that you have a few hours to live because girl you get too close to death way too many times. It’s a very scary thought, but don’t worry you won’t die. 

You have to be strong for what is coming. This will actually make you a better person, selfless, humble, caring. You will see things from a different perspective and try to help more when you can. You will appreciate freedom, food, water, family, friends, your life in general.

Keep the people that are always there for you close and tell them how much you care for them everyday! Soon you will learn life can be taken away from you in seconds.

You can totally forget about the plans you had for your future life. They are COMPLETELY different now. They change pretty drastically, but you slowly start finding other things you are good at and try to find your new path. 


I know this will break your heart, but your sister is sick also. You knew this, yet you didn’t want to seem paranoid so you let the doctors confirm what you said. You get a lot of things right, you have a pretty good sixth sense girl! Trust it, believe it, Trust me.

Not a lot of people will understand what you are going through, other people only freak out if they hear the word cancer (which is terrible) but being chronically ill means living a difficult life. Pills keep you alive, you will even have chemo. Yes, it DOES feel crappy. Yes, you do lose hair and many other things you will find out.

People will think you are fine because they see you smiling or laughing, wearing makeup. I mean you do have good days, but until they live with you, or spend a day with you, on a bad day, they don’t know what it’s really like. So try to not pay attention to ignorant people who only speak because they can. 

The amount of new people who will be blessings in your life is HUGE. You will meet So many wonderful people, they will become like family and many of them will stick around. 

You will have friends in different states even countries! And you should probably start looking up The Spoon Theory and the term Spoonie. 

Your parents will be tired, hurt, but they will never give up. They will be frustrated, they will be scared and traumatized. You guys will learn to hate the hospital but also accept it as a second home. You will ride a helicopter, but you won’t remember anything. Actually there will be Many things you don’t remember (it’s the drugs) lol. 

Oh and remember how you were such a cry baby about pills? Honey you will have pills for breakfast, lunch, and dinner. Some days maybe more, but it’s ok you are a pro now. 

I think the hardest thing to live with is no one can cure what you and your sister have, For now. You will fight though and YOU HAVE TO KEEP FIGHTING! It’s hard having to fight with your own body, with your health! Sometimes….yes, you just want to give up because the pain is too much not just physically but emotionally. I promise you, you will get through it. You have amazing support from so many people. And you know what, you don’t lose your smile. I hope we never do. Stay strong you will get through this!

-Katye

Adapting to this new life 

   I remember my first time being in the hospital, not knowing what was wrong with me. I then remember the first time I was rushed to the ICU that same day, little did i know I would get to know that place real good. I remember crying and having an anxiety attack over a blood transplant. I was scared of EVERYTHING but mostly confused.I remember waiting for answers, doctors talking to me in some other language using big complicated words, repeating my story like 10 times each day! When I did get an answer? I was bombarded with huge medical terms, numbers, medicines, doctors, scales!!! I wanted to scream. Then I had to take a moment…this was going to be my life now so I had to be strong and snap out of it!

 I think about those days and laugh and think wow now i’m a total expert on my chronic illness sometimes knowing more than doctors. I know all my meds, what they are for, what happens if I do not take them etc. Being clueless is scary! Mostly when it has to do with your health. I know that personally I was lucky to have my family. They were with me through all my confusion, my ups and downs, my anxiety attacks, my loneliness, they were my support. 

 Now if I wanted to stand out? I did, because Antiphospholipid syndrome  is rare and they did not know what to do, they couldn’t tell me what to expect. Plus the way my body developed my other chronic illness was scary, the unexpected things I had to go through were hard. Even when you have all the hope and faith in the world hearing your doctors give up and say “we do not know what to do anymore” kills! Hearing those words make you feel hopeless and fill you with sadness.

Today I am still here… You are still here and we are fighting with a smile on our face and if you aren’t that’s ok. Dealing with everything we have, normal life problems and  health problems can be a lot. We are strong, and supporting one another to get through this will make US stronger. Keep fighting!

-Katye

Pressure to succeed 

Do you live each day with the pressure of being better? The pressure of having to be strong no matter what? I mean us spoonies have gone through a lot and we manage to stay strong. Well… Or at least pretend.

I constantly feel as if I have to prove myself to the world. As if I break down I will be judged for not being strong enough. Its pretty ridiculous but true, it takes so much out us to just try to be normal or accepted. I have my ups and downs, just because most of the time i’m smiling doesn’t mean I don’t need a good cry.

No matter how strong you are once in a while  you’ll get that smack in the face like “WOAH!” Has all this really happened! There is so much revolving around us, and our illness. You need to just breath because while it may seem like it should be easy, adapting to this new life probably will never be easy,  Just try your best. 

I try to celebrate each day, and welcome it with a smile because no matter what, you never know when your last day will be. I have been so close to it being my last day, but i have fought and thank god i’m still here. We all have our ups and downs it is VERY understandable we are not suppose to be perfect. So let your feelings just be and LIVE! 

-Katye❤️

Make-A-Wish adventures (continued) 

So as most of you know my sister got a wish granted from Make-A-Wish foundation. I will forever be grateful with them, they made my sisters day so incredibly special! My family and I never expected to be so blessed. Of course on one of  the most special days of my sisters life my phone died and my moms iPad had no more storage space! I still have a bunch a pictures that I will share with you all. I will also go through the stores we went to and the wonderful surprises they had for my sister!

First off my sister got picked up in a limo! It was so shiny! The volunteers rode along and they had a special poster for my sister, flowers, cake pops personally made for her and champagne (just kidding sparkling cider) for the ride!

Once we got to the mall we headed to the visitors/guest desk where they presented Kim with a gift card from the mall to her. They had a wheelchair all ready for her and flowers. They were even nice enough to switch my wheelchair, and we were off to the Apple Store.


Kim knew exactly what she wanted! She got an IPad Pro along with some accessories to go with it. They were very patient and took all the time to explain to her what would work better for her depending on her needs. Since we had lunch reservations we left for lunch while they got everything ready for Kim. We later come to find out they upgraded Kim’s iPad with more gigabytes and they gave her a shirt and USB bracelet in her favorite color lime green. We are very thankful and surprised as these are tools Kim will be using for her education! Next was lunch.





They had decorated a booth for her. This was so special and nice! They had a banner that said happy 18 Bday Kim, a tiara,and little decorations. The service was amazing everyone was super nice! They made sure we were all comfortable. They endlessly refilled our drinks! We had a bunch of fun… maybe too much fun!

This was extremely nice as we rarely have the time or money to go out and eat without having to stress over something like a place being accessible, or people being patient enough with us. The only stress we had was the stress of having to finish our food! They asked Kim what she wanted for desert and she got that specially delivered with a whole group of waiters singing HappyBirthday! 

Next stop was sephora! Kim had a make over appointment scheduled.It’s pretty hard to see what they had written, but it said welcome Kim on the mirror.The sephora employee was super nice and really made Kim look even more beautiful! 

Kimberly bought some more makeup to add to her collection, and was surprised with a goodie bag from sephora! The manager personally delivered it to Kim and everyone was telling her how beautiful she looked!

Next on the list was bath and body.


As you can see they received Kim with a poster, tiara and more flowers! Oh did I mention how happy these people were to see kimmy?! They were so nice and made sure to clear the way for her to get through, and she had her own personal shopper, How awesome right?  Next on the list was build a bear.


Kim decided on a pikachu and bought it some slippers and a fabulous eye mask, Because even Pikachu needs beauty sleep!! Last but not least was Finish line.

The workers had a whole section that said VIP, they set up a table with cookies, balloons, and as you can see a poster welcoming her. She had three workers attending to her needs! They were so patient and helped Kim choose the perfect pair of shoes. They also had another surprise for her, at the moment they did not have the shoes Kim wanted in stock so they bought them for her and she will get them shipped home.It was so sweet of them, they have huge hearts and we are all very grateful. They truly went beyond our expectations and truly,honestly made her feel like the a VIP! 

During the whole time the volunteers were such a blessing as well! One of the volunteers made sure to put all the flowers in water and in a container. She was running from one end of the mall to another! The volunteers also were carring Kimberlys bags and pushing her around, making sure to stop when ever we needed breaks. Every single person was very special! They did such an amazing job and they sent home a Kim that was exhausted but also beaming with excitement from the wonderful day she had. Please support foundations like these they make kids really happy! I know I will forever support them and be thankful for the wonderful day we had! Thank you for staying til the end!

Check out My Make-A-Wish day vlog!
-Katye 

Anxiety

Anxiety and panic attacks are nothing new to me. Even when I think back to when I was a child, I remember panicking over my mom dying and I would have episodes of me just crying and wanting to be around my mom. I would lay in bed and think…. think so much, too much! I would express to my mom that I could not live without her! I would freak out because I wanted to do something about something that hasn’t even happened. I remember not being picked up one day from school ( and even though we lived pretty close) I ran home in total panic! Out of breath, shaking. I honestly do not even remember what happened when I got home, I just replay me running as fast as I can, alone…. scared OUT OF MY MIND. Then many other things happened in my life that just made me a total panicking freak! Today while getting treatment was one of those days where I was that little kid again scared, afraid, frustrated. I had oxygen on but I felt like my lungs just would not fill up with air. I had Lorazepam and Reiki (which is actually very relaxing). You might ask but why? I have a chronic illness that changed my life completely and no matter how many years you have of being sick… You never fully accept it. Today I was hooked up to the IV, hooked up to oxygen, I have to use a wheelchair to get around and to put the cherry on top my dad/ caregiver was not around to help me. I try to hold back freaking out, but I just realize how trapped I am, how much I depend on so many things! Will I ever be independent? It’s so frustrating! I wanna pull out my IV, I wanna not depend on oxygen, or a mobility device, I don’t wanna be on pills to keep me functioning! Don’t get me wrong I am VERY thankful and BLESSED to have all these things to make my life easier. Having anxiety makes everything so much harder it makes it hard to live. I can never just shut off my brain, there will always be something… something I’m freaking out about.