Contact Me:
Mindless Rants of an Accidental Paleo
  • Blog
  • About Me
  • My Diagnosis
  • Medical Information
  • Store

Princess Jordan

9/29/2015

0 Comments

 
I don't exactly remember how it happened. One day we just started talking and she quickly became a close friend. The friendships that are cultivated over a mutual illness create an unbreakable bond between friends. That's what I, and so many others shared with Jordan.

From the first day we exchanged numbers, up until the last text I received hours before her death, Jordan was my friend. More than that, she was a confidant and a supporter.

I write this for me. To try to make sense out of something that is confusing and angering and drowning me in sadness.

I was engulfed in a wave of overwhelming and indistinguishable feelings upon hearing the news of my friend's death.

As I sank to the floor in a puddle of my own heartbreak, our previous conversations replayed in my mind.

Jordan was funny. Hilarious. She used to send these massive texts to our group chats that left everyone in stitches. She said the randomest things and the comic relief was one hundred percent what everyone needed. 

Jordan was kind. I cannot count the times she would read a Facebook status or Instagram update and check on me within minutes of it being posted. Recently, after a life altering appointment, she consoled me and virtually held my hand reminding me we'd get through it together.

Jordan was hopeful.  She was consistently reminding me that things could get better.
She was encouraging. She was smart. She was steadfast in her love.

The hardest part of loosing her is the suddenness of it. I feel like I am walking in a dream state. How could we possibly have been having such a normal conversation hours before she was to leave this earth?

I can't explain what I feel in her absence because all of the emotions are rolled into one big cloud of confusion. I'm angry for the loss of a great friend. I'm happy that she's no longer in pain. I feel guilty for wanting her back, but I also feel numb. Empty.

Less than a week ago Jordan got "See You Again" stuck in my head, and when I turned the radio on today to drown out the jumbled mess in my mind, those words hit me hard. 

"First you both go out your way
And the vibe is feeling strong
And what's small turn to a friendship
A friendship turn to a bond
And that bond will never be broken
The love will never get lost 
And when brotherhood come first
Then the line will never be crossed
Established it on our own
When that line had to be drawn
And that line is what we reach
So remember me when I'm gone"

Not getting to say goodbye is a hard thing to cope with. So Jordan, I know you're out there, and I know you can hear me when I say "thank you." 

Thank you for the laughter, the memories, the support and the love you have shown me throughout the course of our friendship.
Thank you for consistently showing up. Thank you for virtually holding my hand, cursing my doctors, and wiping my tears.
There's so much I wish we could get the chance to do.
I promise you we will all make it to Nashville and toast you with giant frappuccinos like we planned to do just the other day.
I promise to look to God for comfort and continue to seek a relationship with Him.
I promise to never forget you and your legacy of love.

And when we meet again, I promise to hug you so tightly that you can taste every memory we made.

Rest in peace, princess. Gone but not forgotten. 
0 Comments

What I’ve learned from my friends with chronic illness:

9/19/2015

1 Comment

 
Picture
Picture
When I first got sick, I was alone. I was being homeschooled my senior year and spent a large amount of that year in the hospital. Friends I expected to be there for me fell away like leaves on a tree. Some friends I became closer with but eventually they too left, as the reality of my situation was too much to cope with. I still have a few best friends from high school who have no idea what living with an illness is like. They make their best effort to sympathize but they just can't, and it's not their fault. The biggest life changer was when I met my first spoonie friend. Suddenly, I wasn't alone. I was actually being welcomed into one of the most accepting group of girls with their own real issues that I had ever met. I've met a number of phenomenally strong and fantastic friends, but there are a few of which I would literally cross oceans for, and I know they'd do the same for me. Although most of these relationships were cultivated through social media, I can say without a doubt that these people are my rocks. And they have taught me so much about life. Here are 6 things my best friends with chronic illness have taught me:

-There are good people in the world. Actually, seriously GREAT people. If you've never had someone hold your hand while you slip in and out of consciousness or rush you to the ER in a city you've never been too because of your life threatening symptoms, you don't know great people. These girls know what it's like to be sick so they know what I need. I can literally say that they have saved my life.

-It's okay to rely on someone! When you're living with a progressive disease, you have no choice but to accept help. No matter how old you are, you want to hold onto your independence but it's not always that simple. My best friend drives over an hour multiple times a week to drive me places because I am unable to do so myself. It took me a long time to learn to ask for help and having someone who will pass no judgments makes it that much easier.

-It's okay to share your feelings, even when they are scary. Another thing about being chronically ill is the fact that its impossible to talk truthfully to someone without feeling like a burden. I've been friends with my best friend for a year now and she has a hard time talking about things to me because she thinks I have it worse. And I always say to her that suffering is relative. Your thoughts, fears, and opinions MATTER for no other reason than that YOU matter because you exist. Don't ever be fearful of sharing your full self, because believe it or not, I want to hear it. You, and I, we are not burdens.

-Friends are the family you choose for yourself. Don't get me wrong, I have a good family who likes to help, but it feels more like a nurse and patient relationship and they seem to be upset by my needs for certain things. I think they are terrified of what I am becoming. My friends don't care if I have to bring my walker to a concert. They don't mind face timing me for hours because that's the only thing we are able to do and they pass no judgments for the adaptations I use to make my life easier. They even defend me to "cops" who don't understand my need for a parking pass. When you share something as intimate as a chronic illness, your friendship is that much stronger. They don't get upset or feel distant because they know exactly what your situation is.

-It’s okay to fall apart. You are going through an incredibly trying time that likely will not get better anytime soon. Facing the reality of that is not negative, it’s realistic. It's okay to get upset and cry. It's okay not to be okay.

-And lastly to always hold yourself accountable. Hold yourself accountable for your feelings and actions. My friends remind me to come back down to earth. They always entertain my dreams but they make sure to let me know when it's gotten out of hand. Yes, I will have that dream job and that dream house but not until I get through the nitty gritty stuff, and they always make sure I do.

I know my non-ill friends do their best, but they have their own lives to live. They are not aware of my situation because they've never experienced it, and I would never wish them to. But living with a chronic disease forces you to grow up. It forces you to learn lessons way beyond your years and others living with these diseases simply understand that, and they are learning them right along with you.

And to prove that I’m not the only one whose life has been enriched through my disorders, here are some quotes about what my fore mentioned friends have learned from other sick people:

“My friends have taught me that It’s possible to live happily despite struggling with chronic illnesses” ~Sarah Utterback

“Giving up is never an option. Strength comes from love and support.” ~Dalia Chokr

“My friends with chronic illnesses have shown me clear and true friendship, the kind where you would do anything for one another. They put the pieces of me together that I don’t always understand because together, our messy chaos makes sense.” ~ Ashley Graydon


1 Comment

What is the most ridiculous thing you have ever been told regarding your illness?

9/2/2015

5 Comments

 
If you are part of the chronic illness community, you’ve probably heard or read one of the numerous “what not to say” statements or articles that continuously circle the blogosphere. You probably have even seen “what TO say to someone who is sick.” So in this quick little blog post, I asked some of my friends who struggle with chronic illness “what’s the most ridiculous thing you have ever heard regarding your chronic illness?” And let me tell you, the results will make you laugh, they’ll make you cry, and they might even make you think twice about what comes out of your mouth the next time you feel the urge to say something.

I received well over 50 entries so here are my top favorites.


“what’s the most ridiculous thing you have ever heard regarding your chronic illness?”

1.  “A co-worker once made up a rumor that the reason I was always sick was because I was an alcoholic and hung over.”  Tara M. (who suffers from POTs, interstitial cystitis, and more)

2.  “can you ever NOT wear it?”  Rachel L. (regarding her ileostomy bag)

3.  “You have a lot of built up trauma. Were you ever tickled as a child? That can definintley cause your issues.” Tori A. (referring to her severe gastroparesis)

4.  “Ugh, I hate taking medicine everyday.” ~a friend referring to her daily birth control pill, said to someone who takes over 20 pills a day

5.  “When I was at the nail salon getting a pedicure, one of the ladies doing my toes said “I would rather die than live without food…if food gets taken away from me, just kill me” ~Sarah U. (who suffers from gastroparesis and is TPN dependent)

6.  “You’re lucky you have that bag so you don’t have to get up to go pee. Peeing is such an inconvience” ~Said to me by a nurse after my urinary diversion surgery

7.  “is that a tattoo” ~referring to a central line

8.  “Just smile more and you’ll feel better” ~Ashley G. (who suffers from hyper POTS and more)

9.  “that’s a very interesting device you have on your face there” Kristi R. (regarding her temporary pacemaker)

10. “young women don’t get sick” Danielle V. (who suffers from AAG and more)

11. “cant you just get collagen injections?”  Jill S. (regarding her vascular EDS)

12. “If you were religious you wouldn’t be so sick”  ~Drew M. (regarding her multiple chronic illnesses)

13. “Wow it’s like your body wants you to have an eating disorder”  (gastroparesis sufferer)

14. “Rub whisky on your wrists and sip it regularly throughout the day” Lizzi F. (regarding her mental health)


These are most definitely some of the most ridiculous, and frankly, flat out rudest statements most often heard by DOCTORS. It’s frustrating having to fight your body as well as constantly hearing people invalidate your struggles. But, I think I speak for most of us when I say, at least it allows for some good laughs.

What’s the most ridiculous thing a doctor, family member, or friend has said to you regarding your chronic illness?

5 Comments

An Open Letter to the Cop Who Judged my Invisible Illness

8/30/2015

35 Comments

 
To the cop who judged my invisible illness: 

I saw you glare at me as you walked your family into Target. I tried to ignore it as my best friend waited for me to get out of our car that was parked in the handicapped spot. I saw you continue to stare as you typed our license plate number into your phone.

I shrugged it off because I was having an okay day.

What you couldn’t have known just by looking at me is that I am plagued with a severe and progressive neurological autoimmune disease.
It means, quite literally, that my body is destroying my own nerves, and essentially, ruining everything they touch.

I tried to focus on my shopping. I wanted to have a good day with my friend before my major surgery the next week. As you and your staring crept further from my mind, you pulled the most passive aggressive move I could ever have imagined.

You stopped about ten feet away from me in the lingerie section and you said to your wife and children, “hey, let’s go park in a handicapped spot that we don’t need.”

I could have easily flown off the handle. I could have screamed at you or called you names but instead I asked to speak with you. And then you did the most childish thing I have ever seen a grown man do, you ran away.

When I finally caught up to you, your wife, and children, I spoke in a very calm tone attempting to explain myself, because in the last two years I have used a handicapped-parking pass, no one has ever questioned me. I knew it would happen someday, I just didn’t expect it to happen like this.

As I, a young, disabled, woman politely explained to you my need for a parking pass, you laughed and told me to walk away. And because you couldn’t stop acting like a child, that’s what I did. I left you to look like an ass in front of your family.

I hope your children grow up and learn not to judge people the way you judged me. I hope your wife, or someone, will explain to you how utterly rude and hurtful your actions were. Mostly though, sir, I hope you are never in a situation where, God forbid, a passive aggressive, narcissistic bystander who knows nothing about you, judges you or someone you love.

35 Comments

4 Things My Childhood Sport Taught Me About Living  With Chronic Illness in my 20’s

8/29/2015

5 Comments

 
Picture
I was 14 when I was at the height of my gymnastics career. I was training 30 plus hours a week and I loved every minute of it. I continued on in less aggressive degrees of the sport until I was 19 and I also dabbled in the slightly less intensive sport of springboard diving. To say I was a devout athlete is a gross understatement.

I began competing in one form or another when I was 4 years old.  I spent a good portion of 15 years in gyms and pools.

I got sick when I was 17. Now I spend my time in clinics and hospital beds.

I’ve learned a lot of lessons over the years. Some I’ve learned twice from the two most polar opposite situations in the universe. I believe gymnastics prepared me for this by teaching me…

1. self love and acceptance: as a gymnast, I learned to love my body for what it was capable of. I never was angry with the number on the scale or anything else about my physical appearance because my strong body was capable of jaw dropping skills.  It’s impossible to compete in front of hundreds of eyes if you are not confident in your body and it’s abilities. As my illness has progressed, I have began collecting scars and tubes and lines. I have lost weight and all my muscle mass, but never my confidence. I have essentially faded into a shell of my former self. And while I don’t like it, I have accepted that my body is in the fight of it’s life and it’s doing a lot of things to try to keep me safe. I’ve learned to accept that the foreign objects sticking out of me are now a part of me and in order for them to do their job of keeping me alive, I have had to learn to love them.  When most people watch high level gymnastics, they cringe and ask “doesn’t that hurt her?” It’s funny because that’s a lot like living with chronic illness. And although I will never be a gymnast again, I can still practice this love, acceptance, and confidence for my incredible body as it endures things that most would never imagine being able to live through.

2. perseverance: anyone who has ever played any sort of sport can tell you they have learned patience and perseverance. The perseverance it takes to be a gymnast is intense stuff. When you think about it, what kind of person straddles a four inch block of wood or faceplants on the floor and jumps right up and tries again? It also takes patience building muscle and learning the correct way to perform a certain skill. This is invaluable in living with chronic illness. Rushing yourself in your healing will be detrimental to you.

3. to listen: Listen to your coaches, your teammates, your parents, doctors, and nurses. They want to see you succeed; in competition, life, and health. And they usually know what they are talking about.

4. to visualize and work for a better outcome: During practice, our coaches used to have us close our eyes and visualize us doing a certain skill or routine. What does it feel like? What does it look like?  I’ve found myself using this technique over and over again when it comes to accepting new medical devices, seeing new doctors, or visualizing how I’m going to get through my day with my life limiting symptoms.
 
 I miss every part about being an athlete. I miss the routine and the way it made me feel alive. I miss the bond I shared with my coaches and teamates and I miss the adrenaline rush of learning new skills. I miss seeing the look on people's faces when they saw what my body was capable of. I don’t think I'll see the inside of a gym for quite sometime, and I know I will ever compete again. But I take solace in the fact that my gymnast’s heart and athlete’s body have set me up for a successful life despite living with chronic illness. 


5 Comments

Dysphagia Update

8/26/2015

0 Comments

 
Picture
So a few weeks ago I told you guys that "my food tube up and died on me." I decided now is as good a time as any to update on how this has progressed.

For the past few months, my GERD symptoms have been out of control. I was reguring any food I ate within minutes of swallowing and most of the time, couldn’t even swallow. I was experiencing dysphagia with solids, liquids, and even small pills. I was frustrated that this could be "disease progression." I'll be speaking in depth with my doctors (Allergist and GI) shortly, but for now I have a quick update.

I got allergy tested again recently (not because of these symptoms, just bevcause it needed to be done). I get it done every couple of years because I develop allergies ALL THE TIME. Tests came back as the only foods I didn't have an IgE blood response to were eggs, pork, beef, and chocolate. Because I am on TPN, I can safely cut out almost all foods. (Not like I was eating normally anyways) So for about a week and a half, I ate only chocolate, hard candy, and ground beef. (Again I reiterate this is SAFE for me because I get my nutrition intravenously) I made sure to avoid all foods I reacted to on my tests as well as all foods I'd ever had a negative reaction to in the past. And I felt good.

During this period of time, I had my 10th EGD along with biopsies that came back as normal as can be for someone with my disease. (think inflammation and hernias but no obvious reasons for my severe dysphagia)


The elimination diet was going well. I had major reduction in my acid reflux, my chronic (5 YEAR CONSTANT) eczema patches cleared in 3 days, and my dysphagia disappeared. So, of course, I reintroduced what I had been deeming "safe" foods for the past few years. Rice was first on my list. Instantly, I began reguring and vomitting at the dinner table. And the scariest part, the food got STUCK. I was coughing and gasping for air and gulping water. And no, this was not my “typical” anaphylaxis as it moved slowly and I didn't have major difficulties breathing. I swallowed, took a few puffs of inhaler and said bye to rice forever. Interestingly enough, the swelling in my esophagus that caused this dysphagia, only stayed for a few hours. I tried to take my pills at home and they got stuck as well because my esophagus was still swollen from the “dinner.”

The good news here is that it doesn't seem to be disease progression. I’ll know more after my appointment, but I am hoping this means it is NOT AAG related and just an unfortunate result of being me. It seems to be mostly related to the foods I eat.

I was eating rice and wheat crackers EVERY DAY (as well as other foods I had thought were safe for my GP and other health conditions). That is why I believe my dysphagia was progressing and occurring 98% of the time.


I guess I decided to retest this theory (as I often do with my health) whilst recovering from major surgery. I figured "hell, a few crackers wont hurt" HA.

And, again tonight, "hey maybe I can eat part of this granola bar?" Unfortunately that one actually did result in anaphylaxis. Luckily Remi kisses calmed me down after administration of epinephrine. (fyi: anaphylaxis hurts when you have 16 staples)

What I’ve learned here is that not all allergies look the same. 
If you know me, you know I’ve had severe allergies since I was a child that continuously expand and become worse. I never imagined that I would be allowed FOUR safe foods. (I’m experimenting with others that were lower reactions on the IgE tests and luckily I’ve found a few that I tolerate even though they are considered allergies)


So that’s what I know for now. Hopefully that explains it and keeps my food tube working a little longer. I can’t wait to see my confused GI again. I always keep his nose in the books. 


Stay tuned for post surgery update coming soon. 


0 Comments

Rest Easy

8/14/2015

0 Comments

 
I don't really know what to write here. I've been trying to put my thoughts into words but they just aren't coming. 
I didn't even know you. 
We shared one class throughout all of high school. 
The only thing I did know about you was that you were a good friend to my best friend as well as my little brother. And I knew that you had been diagnosed with cancer. 

I kept wanting to reach out. I didn't know how that would come across or if you were even interested in bringing more sick into your life. 
I so desperately wanted to be someone you could talk to because I know navigating this world is very difficult when you are fighting such a horrific disease. 

Today I learned you passed. 

I didn't know what to do. At first I thought I might cry, but then I just kind of sat there, frozen. 
The events of the last few years unfolded right in front of me. 

When you're sick, you know that death is a real possibility any time you take a step. Every single day is a gamble but you continuously put the thought in the back of your mind. As selfish as it sounds, I began to cry for myself. It made me think of all the things this disease has already stolen from me and of all the things I probably won't get to do because of it. I cried for myself and the losses I've felt but I also cried for the losses people might feel upon my passing. 

And I definitely cried for the loss and heartbreak people are so clearly feeling in your absence.

Life is so fragile.

I can't stop thinking about how damn selfish these stupid diseases are. How ridiculous it is that they even exist. 
I'm sad for the people who have lost their battles all around the world. I am sad for your friends and family. And I am angry. I am angry that the voice of cancer and the voice of chronic illness with never be loud enough. 

Rest easy sweet Katherine. I'm at peace to know that you are pain free.


0 Comments

Struggle Bus

8/14/2015

0 Comments

 
Someone recently told me how upbeat and positive on social media I always seem. It struck me that we truly never know what someone is facing.

I do my best to shield the outer world from my pain because at times it's so overwhelming.

When I'm asked how things are its always the vague "I'm hanging in there."

So here's the truth: I'm struggling.


I apologize in advanced for the whiny post ahead but there is light and beauty in sharing my truth.

I decided to share my journey for awareness three years ago. Mainly so people would have an inkling of knowledge into the life of the chronically ill.

My friends and I joke about every time something goes wrong in my body by saying "all aboard the struggle bus."


But the struggle bus is actually real. And it's filled with many different people. 


Not only am I dealing with seizures and syncope, but there's also the matter of my faulty organs, completely losing the ability to swallow, pee, see, and breathe at times. Being stuck in a body you can't control is terrifying. Being consumed by nerve, joint, and bone pain is just exhausting. Trying to go shopping with your friends only to realize that if you stand too long you might be stuck in bed for the next few days. Or wanting to go out to eat but being allergic to everything on the menu. I'm not gonna lie to you, it's not easy. At all. Constantly checking and correcting things in my body in fear that if I don't keep levels between very strict guidelines, I could spend the next week in a hospital bed. I know how to check vitals, draw blood, administer rescue drugs and access ports. This is not something a 20 year old should know without training.

But, alas, its just another day on the struggle bus. 



0 Comments

New Blog!

8/11/2015

2 Comments

 
Hey friends! I've recently decided to make some changes regarding my site and blog. As you've probably noticed, the biggest change is the name of the blog!!

For those of you who know me, you know I have an insane amount of food allergies. So many actually, that the only food groups I don't react to are meat, fish, and eggs. A friend jokingly called my diet "accidental paleo" and I just loved it so much I thought it would bring some comic relief to my blog that deals with some pretty heavy topics!

I have also downloaded this fancy app where I can directly post my blogs from my phone so yall wont miss a single thought of mine.

Finally, I've decided to stop being so politically correct in my blogs. These writings are to show case my experience as a disabled woman and it's time for me to own them. So if cuss words, girlish whines, and angry rants aren't your thing, this might not be the best place for you.

As always, thanks for the love and support! See ya soon!

2 Comments

An Open Letter to Everyone in my Life

5/13/2015

0 Comments

 
Dear everyone,

Thank you to the doctor who believed me when I walked in and told him that I was sick.  Thank you for listening and not just hearing me. Thank you for always fighting for me and never giving up hope. Thank you for advocating on my behalf with the insurance companies and testing me for everything my paranoid brain came up with, if only to keep me calm.  Thank you for pushing me to stay in school and for reminding me that a wheelchair is not giving up. Thank you for everything you have ever and will ever do for me as a patient. You are the reason I haven’t given up.

Thank you to the nurses who have held my hand through painful procedures I had to be awake to endure. Thank you for administering medication whenever I asked for it. Thank you for being my sister and brothers and my mom and my best friend when they couldn’t be there themselves.  Thank you for staying way past your shift to paint my nails or do my hair. Thank you for pretending to let me help plan your wedding. Thank you for telling me about new research and treatment options. Thank you for fighting the doctors when they didn’t have my best interest at heart. You inspire me to become a hero in scrubs.

Thank you to the friends who have stuck by my side since that very first diagnosis. Thank you for holding my hair back when I spend the night vomiting in the bathroom. Thank you for rubbing my back and holding me when all I can do is cry and writher in pain. Thank you for staying at home with me and watching movies while your other friends were out at parties or other events more suitable for a 20 year old. Thank you for driving me all over town and for what you constantly do to help me feel included. Thank you for offering to do my shopping and host fundraisers on my behalf. You make me realize that I can be myself and prove that I am still worthy of love.

Thank you to my sisters for face timing my puffy and flushed self no matter how you are feeling. Thank you for letting me vent and for sending prayers and love my way every day. Thank you for every single care package and card and dollar you have sent to me. Thank you for your love. Thank you for your words of wisdom and your comforting hand when I feel I cant keep going. You have carved me into the best and most compassionate form of myself that I can be.

Thank you to anyone who has ever been inspired by my fight.

Thank you to the strangers who tell me I am too young to be sick. You have made me bold enough to stand up for myself.

Thank you to the people who didn’t believe in me. You taught me that the only person I have to impress is myself.

Thank you to the “friends” who gave up on me. You showed me that I am the only person I need to count on.

Thank you to everyone everywhere who didn’t believe me when I insisted something was very wrong. You made me stronger. YOU are the reason that I have become this ferocious fighter.

And thank you to myself, for being one badass warrior and always laughing at the unfortunate events that arise from being chronically ill. Thank you for being a peacekeeper, a dream maker, a go-getter, and an unconditional lover. Thank you for not giving up. Thank you for always fighting for what you believe in no matter what you feel like on the inside. You should remind yourself more often of how awesome you are.

And lastly, from the bottom of my heart and soul, thank you to all of you who have followed my journey and cheered me on. I look up to and admire every single one of you. Your steadfast love and constant encouragement have truly gotten me further than I could ever have imagined.

Thank you all for being my cheerleaders, caretakers, best friends, sisters, chosen family, chauffeurs, personal shoppers and cooks, therapists and most importantly, supporters. I could never express what it means to me.

Love,

Me

0 Comments
<<Previous

    About Me

    Hi! I'm Tori and welcome to my page. Check out more about me under the "About Me" tab.

    Archives

    September 2015
    August 2015
    May 2015
    April 2015
    March 2015
    February 2015

    Categories

    All

    RSS Feed



Powered by Create your own unique website with customizable templates.