Saturday, August 23, 2014

My Guardian Angel

As I sit here thinking about my first REAL treatment that I will be receiving in the next few weeks, I find my mind taken over by the memory of my grandpa Bill. Maybe it’s because he received this treatment too, or maybe it’s a sign that I need to strive to be more like him. 

If you only ever know one thing about him, let it be this: he was one of the greatest men I have ever known.

Grandpa Bill’s sense of humor and laid-back attitude are two of the things I remember vividly about him.  He had such a dry sense of humor and almost every conversation ended with you trying to figure out if it was all some elaborate tale or not. I admire him for holding onto that during his entire fight.  I know how hard it is to keep smiling when the road of illness is so long and daunting. When I saw him just a few weeks before he passed, he had me in tears because I was laughing so hard.  I am so inspired by his positivity and how he kept that laughter in such trying times.
He was also incredibly strong. In his last few months, nurses and family would ask him “how are you doing?” and he always answered, “well, I think I’m doing okay.”  I’m not sure if he really thought that he was doing alright or if he just wanted to spare everyone the heartbreak of realizing that he wasn’t.  That, to me, not only represents his strength, but his kindness as well.

I miss him dearly but his journey has taught me so much. What more do you really need out of life other than a heart full of love, undying strength, and a wicked sense of humor?
I hope to be at least half the person he was someday.

 Rest in paradise grandpa.

Friday, August 15, 2014

Dear Body

Dear Body,

I want to apologize for the way I've been treating you. I have been selfish and I am sorry I put you through so much that you truly didn't deserve. I  am sorry for blowing you off when you need "me time." I am sorry for ignoring you when you were hungry. I'm sorry for calling you ugly and broken and stupid. I'm sorry for not listening to you when you said you'd had enough at the gym. I am sorry for pushing you to do things that you weren't ready for. I am sorry for filling you with fake junk. I am sorry for ignoring you when you said you were in pain. I am sorry for not treating you kindly the way the doctors prescribed. I am sorry for all of this and so much more. I want you to know, I love you. I love everything you were capable of when I was an athlete. I love you for being a home for me. I love you because you are strong and you are beautiful. I promise I will keep loving you. I promise I will treat you better. Thank you for everything you do for me. Thank you for all the amazing things you are capable of! 


Monday, August 11, 2014

Beauty in the Breakdown

Chronic illness doesn't stop. It's stubborn and mean and damn persistant. It's the biggest bully you will ever come across. It beats the hell out of you and while you're on the ground, broken, asking for it to finish its job, it takes a step back. It takes a break for a few days and lets you pretend like you are normal. You find a glimmer of hope in the stillness. Then, just as quickly as it went away, it's back again. Like a thief, it steals your future hopes and dreams, your health, your energy and your life. I think that's what keeps me fighting, the hope for a good day. I'm learning how to cherish those days and spend them with those who matter most. I'm also learning that, quite frankly, I don't give a crap what people think. The only people that matter now are the people who don't care that I am constantly in pajamas. They don't care that I rarely shower. They don't mind skipping a night out at a party to have a night in on the couch watching movies. They hold me when I break down. These are the people that I love. These people are the ones who do everything they can to keep me in the moment. As I am really struggling with this new diagnosis and the possibilty of another one, I look at my beautiful life. The life that, yes, is full of pain and medications and tubes and doctors; but a life that is also full of hope and love and faith. When I take a step back to look at the bigger picture, I'm always completely blown away by the magnitude of His presence. I don't and can't and never will understand why He chose me to fight this battle, but I trust that the reason is bigger and more beautiful than I could ever fathom. I'm being torn apart, but somehow, it's okay. Somehow, He makes it beautiful. 


Tuesday, July 29, 2014

Say What...?

I know there have several posts about what not to say to those who are chronically ill.  While I agree with most of those, I have a few more that I hear ALL the time that really get under my skin.

I apologize in advance because this is a bit smart-assy.

You’re too young to be sick:
No. I’m not. This is just ignorant. Babies get sick, children get sick, and I got sick.  You are never too young to be sick. I have heard this so many times and I’m about ready to scream.

It could be worse:
Yes, you’re right, it could be worse, but it also could be a lot better. Telling me that there are starving kids in Africa helps no one. It doesn’t diminish my pain, and it doesn’t feed them.  All suffering is relative.  What hurts one, may kill another so there is no hard and fast rule about what is bad and what is worse. Yes, it could be worse, but it’s bad enough and I’m allowed to be sad about that every now and then.

Have you tried…:
Yes. I have.  Have you tried closing your mouth? As a spoonie, I am more than aware of the new medications and trials out there. I research them religiously. While your advice is appreciated, it’s not wanted. 

I know you’ll be better soon:
Do you know what chronic means? Seriously? I know people like to have hope and remain optimistic, so do I; but I am also realistic and it is actually insulting when you look me in the eye and say “you’ll be better soon,” Chances are, I won’t.

I think I might have that! / Oh, that happens to me!:
I’m sure you do get stomachaches and have acid reflux now and then. I’m truly sorry that anyone has to experience any type of pain. I’m sure you do get a little dizzy upon standing up and I know that can be scary, but you should see a doctor before you compare your fight to mine. You have no idea what I go through; just like I have no idea what you go through so don’t assume you can diagnose yourself based on the limited knowledge you have of my symptoms.

This is not directed at anyone in particular and it is not meant to offend anyone. I know people mean well but words, even well intentioned ones, can have repercussions and they can be hurtful and insulting. Please, just think before you speak. 

Monday, July 28, 2014

The Whole Picture

It’s amazing the support you get when you go through a tough time or a change. Its also very eye opening the support you DON’T get. 
I have had prayers said all around the world for me. I have had cards, flowers, candy, and stuffed animals sent to me. I’ve had people cry in the hospital for me, but...
I’ve also lost friends, been stared at, judged, told I was faking for attention, and said I have let my illness define me.

Yes. I DO talk about my diseases.

Here’s the thing; there is so much to who I am.
 I am a daughter, a sister, a best friend, a fighter, an unconditional lover, an advocate for animals, a believer, an athlete, an artist, and a little bit crazy, but I am ALSO sick; and I probably always will be.

I refuse to hide any part of me because it makes other’s feel uncomfortable. I refuse to be silenced because my posts or rants are “annoying.”  My WHOLE self is beautiful. EVERY part of the puzzle fits together perfectly to make me who I am.

Sunday, July 27, 2014

A Little Fun

Here's some humor for your day! These sayings are from myself and fellow spoonies. Enjoy!!

You know you have a chronic illness when…

Your wifi automatically connects when you step through the hospital’s doors

You can’t remember the last time you were well enough to shower

You have a packed hospital bag ready at all times

When someone says “you look good” and it actually makes you feel frustrated; not flattered

The pharmacist brings your medications to the counter without you having to give him your name. . . and then asks how the kids are and tells you about his vacation.

Your spelling has improved dramatically, especially on words like “fibromyalgia” and “osteoporosis.”

Your friends on social networks have no idea what you actually look like anymore because all you post as your profile image are awareness ribbons

You know every scripture about healing and can finish people’s sentences when they try to quote them to you

It’s more fun to find “cute pajamas” than actual clothes

You actually enjoy talking to telemarketers because they can’t really hang up on you and you can use them for a therapy session

You spend more time in PJs than in real clothes

You know where every bathroom in the tri-state area is

You start getting junk mails sent to you at the hospital

You can go 0-90 in a heart beat…literally

Saturday, July 26, 2014


Okay, so I realize it's been over ten days since I last posted. I apologize for that!!

Since we last spoke, several things have happened. So here is a quick update!

I saw my neurologist who FINALLY put me on something to stabilize my blood pressure! It has helped so much and I am so grateful to that little pill. I don't pass out nearly as frequently and my blood pressure is no longer scarily low. 

I also was supposed to have another Gastric Emptying Scan, which unfortunatley, I could not complete as I threw up all the medication.

As ya'll know, I've been losing weight and my ER trips were becoming more frequent so I made a plan with my GI for TPN. (IV nutrition) Unfortunatley, my disease progressed so fast that I had to be admited to the hospital to start TPN early. I am now home and doing well (fingers crossed it continues) on TPN at home. 

I have several upcoming appointments and will share with ya'll when I know more!!

Now for the fun stuff! I decided to start a little charity called Tori's Happy Pills. 
What I am going to do is send out my homemade glitter pills to people suffering from illnesses. If you or someone you know wants some, here is what you do:
Message, text, or kik me their name and address and BAM, (in a few days) they will get some sparkle into their lives. 


I only ask one thing, share to spread the love! I can't wait to start!