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.

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! 

Love,

Me 

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. 

#faithnotfear

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. 

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.

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

Update

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. 

THIS IS A CHARITY SO IT IS COMPLETELY FREE AND WILL ONLY SURVIVE ON DONATIONS. 

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

Patient Profiling: An Ugly Truth

Earlier today I came across an article on patient profiling. I had long since known I was a victim of this practice and decided it is time to speak out.

My doctors have profiled me as an anorexic, a bulimic, and severely mentally ill.

As a young child I struggled with depression and an anxiety disorder. These struggles were constant and real for a very long time. When I started throwing up daily and losing a scary amount of weight, my doctor was quick to slap the big and scary "eating disorder" on my file and refused any further medical treatment for me.  I respected her thoughts but knew there was something else going on inside of me.  I consulted a specialist and was finally taken seriously. After a myriad of tests, I was diagnosed with gastroparesis.  When I continued to lose weight, I was sent to the hospital for more radical treatments. After several failing feeding tubes, the doctors, obviously frustrated, claimed my disease was now "in my head."  They refused to give me pain medications and threatened to send me to the psych floor. After weeks of this degrading treatment from so called "professionals," I wised up and asked for a new doctor. Two hours after visiting with this new doctor, I was being scheduled for an emergency surgery. This pain was NOT in my head, it in fact, was in my gall bladder.

Later on in the year of 2013, I was in the middle of a massive gastroparesis flare. I wasn't holding down anything, including water. After a few days of suffering I went to Kid Med to get fluids and IV nausea medications. As soon as the doctor came in to see me, she suggested I go to an eating disorder clinic and discharged me without any sort of medical treatment.

One person can only take so much. After that, I started to doubt my gastroparesis diagnosis, I started to think that maybe I was, in fact, sick in the head. I even let one of my doctors talk me into going to an inpatient eating disorder clinic. (that's a story for another time)  After I walked out of there AMA, I think my doctors finally started to realize the seriousness of my physical disease.  However, at this point I had began treating myself because I no longer had any trust in doctors.

To this day, when I walk into a clinic, ER, or doctors office, I know for sure the first thing they think is "this skinny young girl cannot be this physically sick, she must have an eating disorder." I can see how it is easier to send me off to psych without any medical treatment, but it is not right.

Now, I am in no way belittling eating disorders or those who suffer from them. I imagine it is a special kind of hell, it's just not my hell.

So, let me end by saying this; to all of those who suffer from an eating disorder, you are in my thoughts and prayers. To all of those who have been a victim of patient profiling, I encourage you to stand up and speak out.  This will remain a problem so long as it is covered up and ignored. Let's change the way doctors judge us. Let's end this now.

Pain

"Pain. You just have to fight through. Because the truth is, you can’t outrun it. And life always makes more."

Chronic illness does not end.  It does not get easier; but you mature and you strengthen and you learn how to cope with the never ending uphill battle. Pain, no matter what form it comes in, whether it be mental or physical, is stronger than all of us. It will knock us on our butts EVERY. SINGLE. TIME. What I have learned is that if you let pain overpower you, if you succumb to it, it becomes easier to ride out. Make no mistake, all pain ends, but it is ALWAYS coming back. In another form or another time, you will come face to face with this monster again.  The thing is though, everyone can live with pain, and most people are.

  It seems to me that a common misconception, at least among my community, is that the more pain a person lives with, the stronger they are.  This is simply untrue.  I have had so much pain in my life, but that is not what makes me strong. I am not strong because I don't give up. I am not strong because I fight with a smile on my face. I am not strong because I get up and live despite my overwhelming pain. I am not strong. God is strong. His strength flows through me. His strength and love powers my every move. His grace is sufficient for me and it is for us all. We have to learn how to accept it and show the pain of this life that the strength of our God is unbeatable.

SHE'S BACKKKK

I have been avoiding this for quite some time now.
A few of you know that a couple months back I was given some terrifying news. I was told that if I didn't return to artificial nutrition, it was unlikely that I would live to see 21. I felt in my bones that this couldn't be MY truth, so I fought it. I went into what my doctor called an "unexplained, miracle, disease remission." Even though I still relied on a mostly liquid diet, I had more energy and was slowly gaining weight. It was fantastic.

Over the past few weeks though, things have been regressing to my pre-diagnosis stage; when I was so ill that I was living on TPN and confined to a hospital room. Remember that? Yeah. It sucked.

Today, what I feared the most has been confirmed; the belly monster is back, and she is PISSED.

Due to my bodies inability to tolerate any sort of gut tube feeding, the recommendation is that I start back on TPN.

Keep on sending me all the love, prayers, and good vibes you have!!!

Love you all so very very  much!

"When you stand and share your story in an empowering way, your story will heal you and it will heal somebody else." ~Iyanla Vanzant

Update

I apologize for the fact that I haven't posted in 12 days!!!! I also want to share a quick update.

Last time I posted was before Father's Day.  Here is what has been going on.

For Dad's Day, my family and I went out to eat for brunch, when not more than 10 minutes in, I became tachy (extremely fast heart rate) sweaty, and nauseous.  When our waitress was taking our drink orders, I blacked out.  My dad had to help me into the car and take me home before he was even able to order his food.  That was the first time I had gotten that sick out in public since my new diagnosis.  The next few days were even worse.  I somehow was able to get through my morning job and barely make the drive home before blacking out; this continued all week long.
The weekend rolled around and I was determined to make it to Michigan, and because I am an incredibly stubborn person, I pushed myself beyond my limits and my body did not respect me for that choice.  I was able to make it through the fundraiser with moderate nausea and some lightheadedness.  This week has been pretty hard due to lack of sleep and the flare I instigated; flares always throw my reality right in my face, "YOU ARE SICK. ha.ha.ha. and don't you forget it."

But, there is a light at the end of the tunnel of crappy doctors.  After an endless fight and long search, I have decided to return to one of my old GIs and return to his plan of action. I also am FINALLY leaving my horrid PCP for a new doctor. I have heard great things and am very hopeful that he can help me out a bit.  I saw my nutritionist today and have reverted back to a full liquid diet (which is actually fun with my new juicer) Next month I have my neuro follow up to discuss more aggressive treatments such as blood pressure medications and beta-blockers.

That's it for now friends! As always, I am always up for blog post suggestions.

Stay happy. Stay healthy.

Stress

Stress is NOT my friend.

Well, I guess stress doesn't really have any friends...however, it does have enemies; me being its very biggest.

As I am sure everyone knows, stress can jump start a lot of illnesses while making pre-existing ones more severe.  Those of you who know my story, know that my illness came to a head at the beginning of my senior year; when I was over-the-top anxious about applying to college and struggling to hold down a job.  Not only did this stress exacerbate my GP causing me to vomit 50 plus times a day, it also gave me a short fuse which caused me to have a bad attitude about everything; I was a very difficult person to be around.  

Through the last several months, I have found ways to stay fairly stress free.  These include: enough sleep and not working (or working a flexible, part-time job); as well as the right mixture of happy meds, varying calming techniques such as yoga and hanging out with Remi, and learning how to communicate when enough is enough. 

I make sure I go to bed at a reasonable time. Sleep is so important. When I was in the hospital for months on end, I would stay awake for up to 60 hours straight. Sleeping on a schedule has made a HUGE difference. As long as I get at least 10 hours of sleep (I know it sounds like a lot) I can function like a semi-normal human being. (come to think of it, that is probably why I have felt worse than usual the past few days.. I haven't slept well in over two weeks)

I miss working, I really do. I miss making a difference and teaching kids why I loved gymnastics. The reality is, I just cannot go back to a job that demanding. I have had to find other ways to make money and be happy, like my puppy, Remi!  She has made a huge difference in the way I feel.  Although she can't heal me physically, playing with her reduces my stress and really effects my mental health in a positive way; she is the biggest blessing in my life. (even when she eats my hair and begs me to play ball)

This doesn't mean I am stress free. I have just really had to learn how to cope with the daily stresses of life and learn to avoid the unnecessary stuff. 

Learning how to say "no" is a big part of stress reduction. I am famous for piling too much on my plate too soon. This has been one of the hardest lessons to learn. I can't help everybody every time.

This is extremely important to me because my body is extremely sensitive to stress; it's actually quite ridiculous.  Just today, I was trying to organize some photos and put the correct dates and ages on each one and it just seemed to never end.  Less than an hour later, I was suffering from a migraine, unrelenting nausea and vomiting, and dizziness. 

As a quick "heads up," I will probably not continue to do as many blog entries as I am at the moment because my part time job begins next week.  Also, make sure to be looking out for a detailed health update coming up in the future!