Rare Disease
To the Person Who Left Me a Rude Note After I Parked in a Disability Spot
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Last updated: March 30, 2024
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To the Person Who Left Me a Rude Note After I Parked in a Disability Spot To the Person Who Left Me a Rude Note After I Parked in a Disability Spot To the Person Who Left Me a Rude Note After I Parked in a Disability Spot
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You left a rude note on my car that said, “Handicapped? Low life!” after I parked in a disability spot. Even though I had a disability placard in my car, it’s clear you still didn’t believe me.
Instead of being upset by it, I would like to take this moment to educate you and to advocate for everyone living with an invisible disease.
I have an invisible and undiagnosed rare disease and so do my three children.
Even though I don’t walk with a limp, every single step hurts.
Even though I’m only 43 years old, my body hurts and I wouldn’t wish this pain on my worst enemy.
Even though I don’t have a name for my undiagnosed progressive, aggressive osteoarthritis in my distal joints, my hands hurt and there is no medicine that makes the pain stop.
Even though I have a torn capsule in my left hip, I refuse to have another hip surgery due to the recovery period.
Even though I have temperature intolerance, I still have to walk in the freezing cold and the intense heat with fatigue and pain.
I could go on and on about why I have a disability placard or why I have it for my children, so I shouldn’t feel like I need to defend it. However, I felt bad having to explain to my three children why someone would be so mean to us.
I actually felt sad for you. I felt sad that there is a person in this world who he thinks someone would falsely put up a disability placard in order to get a good parking space and would take the time to write a mean note.
I’m proud of my disability placard, and I appreciate it every single day. It’s a badge of honor because it proves I have doctors who believe my pain is real and that the pain my children experience is real as well.
I truly believe your note says more about you as a person. This is why I continue to advocate for my children and for all rare and undiagnosed children. We live in a world where people judge you by the way you look. We live in a world where doctors don’t always believe you when you tell them there is something wrong with your child or with yourself.
As a mother of three undiagnosed children and being undiagnosed myself, I will continue to advocate until everyone in the medical system and the public understands what it feels like to live with an invisible disease.
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Gina Szajnuk (Zanik) was born and raised in Madison, Wisconsin. She serves as the Co-founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization. Her three children, each of whom live with an undiagnosed rare disease, continue to inspire and motivate her to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. Gina is also living with an undiagnosed rare disease. In 2016, Gina was the Chair of Utah Rare and made Utah the #1 state for Rare Disease Day. She was on the Executive Committee for Utah Rare for four years. Gina continuously works to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform. She is a member of the Participant Engagement and Empowerment Resource (PEER) of the Undiagnosed Diseases Network (UDN). She is a member of the Undiagnosed Disease Network International (UDNI) as well as the Rare Disease Diagnosis Consortium. She has been asked to be a Rare Disease Advocacy Professional for The Rare Advocacy Movement (RAM). She served as the National Organization for Rare Disorders (NORD) as their Utah State Ambassador and then as their Undiagnosed Advocacy Ambassador for four years. She is currently working to launch, as the Co-founder, a new platform, RUNmyDNA.com. She is a public speaker as well as a contributor to The Mighty. She is married to Justin Zanik, the NBA Utah Jazz Assistant General Manager. Through her husband’s position in the NBA, Gina has brought awareness to the NBA about the importance of rare and undiagnosed diseases through RUN's NBA Initiative started in 2015. In 2016, Gina won the Rare Voice Award from the EveryLife Foundation for Rare Diseases as well as accepted the Rare Champion of Hope - Advocacy Award from Global Genes. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.
Originally published: January 4, 2017
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To the Person Who Left Me a Rude Note After I Parked in a Disability Spot To the Person Who Left Me a Rude Note After I Parked in a Disability Spot To the Person Who Left Me a Rude Note After I Parked in a Disability Spot
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I had people where I work call in to the police because I parked in the disabled parking with my Disabled Parking Permit hanging from my mirror. They were sure I must have gotten it from someone else. and using it illegally. Of course, nothing happened because it's mine and registered to me.
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I have a placard and today I parked in a spot and at a store. I come back to a note saying I can't drive if i am handicap and can walk. If they only knew I have special shoes for torn tendons, charcot foot, svt, torn ligaments in both knees, Athena, and a ton other things. I have a wheel chair and I take 32 pain killers a day. Most days I am at home helping pain once in a while I will have a good day and her to go out. People have no clue some times.
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[When Your Child With a Rare Disease Doesn’t Feel Brave\ \ Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows [...]](/content/topic/rare-disease/child-rare-disease-scared-how-to-help/ "When Your Child With a Rare Disease Doesn’t Feel Brave"/index.html)
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[How My Daughter's Rare Disease Opened My Eyes\ \ When my daughter was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. That moment was reality-altering. In fact, I remember very little from that day, except [...]](/content/topic/rare-disease/how-my-daughters-rare-disease-opened-my-eyes/ "How My Daughter's Rare Disease Opened My Eyes"/index.html)
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June for me has been __________.
Hi, Mighties! 🩷
Let's do a mid-month check-in!
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☑️ What have you been working on lately?
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TRUE or FALSE: I find list-making helpful.
In this week’s forecast of self-care challenges, we’ll be exploring the topic of list-making. 📋
Whether it be to shop for groceries or reflect on how you’re feeling, creating lists can definitely be a succinct and straightforward way to express and organize your thoughts and ideas. In other circumstances, creating lists can also feel like an added chore depending on your needs and preferences.
What are your thoughts? Do you find list-making helpful to you?
[#52SmallThings](/content/topic/52-small-things/ "#52SmallThings: A Weekly Self-Care Challenge"/index.html) [#CheckInWithMe](/content/topic/checkinwithme/ "#CheckInWithMe: Give and get support here."/index.html) [#Selfcare](/content/topic/self-care/ "Self-care"/index.html) [#MentalHealth](/content/topic/mental-health/ "Mental Health"/index.html) [#Disability](/content/topic/disability/ "Disability"/index.html) [#ChronicIllness](/content/topic/chronic-illness/ "Chronic Illness"/index.html) [#ChronicPain](/content/topic/chronic-pain/ "Chronic Pain"/index.html) [#RareDisease](/content/topic/rare-disease/ "Rare Disease"/index.html) [#Anxiety](/content/topic/anxiety/ "Anxiety"/index.html) [#Depression](/content/topic/depression/ "Depression"/index.html)
[#Autism](/content/topic/autism/ "Autism Spectrum Disorder"/index.html) [#Parenting](/content/topic/parenting/ "Parenting"/index.html) #PTSD [#BorderlinePersonalityDisorder](/content/topic/borderline-personality-disorder/ "Borderline Personality Disorder"/index.html) [#BipolarDisorder](/content/topic/bipolar-disorder/ "Bipolar Disorder"/index.html) [#Fibromyalgia](/content/topic/fibromyalgia/ "Fibromyalgia"/index.html) [#Lupus](/content/topic/lupus/ "Lupus"/index.html) [#MultipleSclerosis](/content/topic/multiple-sclerosis/ "Multiple Sclerosis"/index.html) [#Migraine](/content/topic/migraine/ "Migraine"/index.html) [#Spoonie](/content/topic/spoonie/ "spoonie"/index.html)
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My favorite cactus
This is a picture of my San Pedro Cactus it only blooms every 7 years i have several that will flower this year very happy. I have had this San Pedro for 12 years then i propogated off this one to make more so more pictures to come. This is also known as the moon cactus because it blooms at night 🙂 [#MentalHealth](/content/topic/mental-health/ "Mental Health"/index.html) [#DegenerativeDiscDisease](/content/topic/degenerative-disc-disease/ "Degenerative Disc Disease"/index.html) [#MuscularDystrophy](/content/topic/muscular-dystrophy/ "Muscular Dystrophy"/index.html) [#Depression](/content/topic/depression/ "Depression"/index.html) [#Anxiety](/content/topic/anxiety/ "Anxiety"/index.html) [#RareDisease](/content/topic/rare-disease/ "Rare Disease"/index.html) [#ChronicIllness](/content/topic/chronic-illness/ "Chronic Illness"/index.html) [#ChronicPain](/content/topic/chronic-pain/ "Chronic Pain"/index.html) [#cervicalfusion](/content/topic/cervicalfusion/ "cervicalfusion"/index.html) [#lunbarfusion](/content/topic/lunbarfusion/ "lunbarfusion"/index.html)
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This week, I’m proud of myself for…
It's the end of the week, Mighties! We did it. 💃
What's something you’re proud of yourself for this week?
Share your victories in the comments below (and yes, engaging with this post counts as a win!). ⭐
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One step at a time.
One of the things [depression](/content/topic/depression/?label=depression "depression"/index.html) does best is convince us that we need to solve everything at once.
We think about next week.
Next month.
Next year.
All the things that could go wrong.
All the things we haven't accomplished yet.
All the ways our life isn't where we want it to be.
And eventually the weight of it all becomes overwhelming.
But life is rarely lived all at once.
It's lived one day at a time.
One conversation at a time.
One decision at a time.
One step at a time.
You don't need to figure out the rest of your life today.
You just need to make it through today.
And sometimes that's more than enough.
What's one small thing you're grateful for today?
Also, if you're going through a tough time right now, I want you to know that I post daily [mental health](/content/topic/mental-health/?label=mental%20health "mental health"/index.html) videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer:
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~ Thanks to all. Thanks for all. ~
#MentalHealth [#MentalHealth](/content/topic/mental-health/ "Mental Health"/index.html) [#Depression](/content/topic/depression/ "Depression"/index.html) [#Anxiety](/content/topic/anxiety/ "Anxiety"/index.html) [#BipolarDisorder](/content/topic/bipolar-disorder/ "Bipolar Disorder"/index.html) [#BorderlinePersonalityDisorder](/content/topic/borderline-personality-disorder/ "Borderline Personality Disorder"/index.html) [#Addiction](/content/topic/addiction/ "Addiction"/index.html) [#dissociativedisorders](/content/topic/dissociativedisorders/ "Dissociative Disorders"/index.html) [#ObsessiveCompulsiveDisorder](/content/topic/obsessive-compulsive-disorder/ "Obsessive Compulsive Disorder"/index.html) [#ADHD](/content/topic/adhd/ "ADHD"/index.html) [#Fibromyalgia](/content/topic/fibromyalgia/ "Fibromyalgia"/index.html) [#EhlersDanlosSyndrome](/content/topic/ehlers-danlos-syndrome/ "Ehlers-Danlos Syndrome"/index.html) #PTSD [#Cancer](/content/topic/cancer/ "Cancer"/index.html) [#RareDisease](/content/topic/rare-disease/ "Rare Disease"/index.html) [#Disability](/content/topic/disability/ "Disability"/index.html) [#Autism](/content/topic/autism/ "Autism Spectrum Disorder"/index.html) [#Diabetes](/content/topic/diabetes/ "Diabetes"/index.html) [#EatingDisorders](/content/topic/eating-disorders/ "Eating Disorders"/index.html) [#ChronicIllness](/content/topic/chronic-illness/ "Chronic Illness"/index.html) [#ChronicPain](/content/topic/chronic-pain/ "Chronic Pain"/index.html) [#RheumatoidArthritis](/content/topic/rheumatoid-arthritis/ "Rheumatoid Arthritis"/index.html) [#Suicide](/content/topic/suicide/ "Suicide"/index.html) [#MightyTogether](/content/topic/mightytogether/ "We Are #MightyTogether"/index.html)
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One step at a time. One step at a time. One step at a time.
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What’s a goal that you’re working toward right now? What progress have you made so far?
Every step, change, or shift you make toward a goal is significant, even if it’s small. Progress is progress after all.
What’s a goal that you’re currently working on? What have you achieved so far? Are there any roadblocks in your way?
Mighty staffer [@sparklywartanks](/content/u/sparklywartanks/ "sparklywartanks"/index.html) made a goal to make sure she’s checking in with her energy levels and [mental health](/content/topic/mental-health/?label=mental%20health "mental health"/index.html). So far today, she’s been pacing herself, taking her time, and reflecting on her feelings.
Let’s cheer one another on in the comments below. 💌
[#52SmallThings](/content/topic/52-small-things/ "#52SmallThings: A Weekly Self-Care Challenge"/index.html) [#CheerMeOn](/content/topic/cheermeon/ "Cheer Me On"/index.html) [#CheckInWithMe](/content/topic/checkinwithme/ "#CheckInWithMe: Give and get support here."/index.html) [#Selfcare](/content/topic/self-care/ "Self-care"/index.html) [#MentalHealth](/content/topic/mental-health/ "Mental Health"/index.html) [#Disability](/content/topic/disability/ "Disability"/index.html) [#ChronicIllness](/content/topic/chronic-illness/ "Chronic Illness"/index.html) [#ChronicPain](/content/topic/chronic-pain/ "Chronic Pain"/index.html) [#RareDisease](/content/topic/rare-disease/ "Rare Disease"/index.html) [#Anxiety](/content/topic/anxiety/ "Anxiety"/index.html) [#Depression](/content/topic/depression/ "Depression"/index.html)
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What’s a goal that you’re working toward right now? What progress have you made so far? What’s a goal that you’re working toward right now? What progress have you made so far? What’s a goal that you’re working toward right now? What progress have you made so far?
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YOU DON’T NEED TO KNOW HOW
One of the biggest lies [depression](/content/topic/depression/?label=depression "depression"/index.html) tells us is that we need to have everything figured out before we take the first step.
We think we need a perfect plan.
We think we need certainty
We think we need to know exactly how we're going to get from where we are today to where we want to be.
But that's not how growth works.
Most people who accomplish incredible things didn't start because they knew exactly what they were doing.
They started because they were willing to take one small step despite not knowing.
One phone call.
One workout.
One application.
One conversation.
One day of not giving up.
You don't have to know how you're going to get through the next year.
You don't even have to know how you're going to get through the next month.
Sometimes all you need to do is take the next step.
The path often becomes visible after you start walking it.
What's something in your life you've been waiting to start?
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~ Thanks to all. Thanks for all. ~
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YOU DON’T NEED TO KNOW HOW YOU DON’T NEED TO KNOW HOW YOU DON’T NEED TO KNOW HOW
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