Mighty Well
  • Shop
  • Learn
  • Journal
  • Join Us
  • Who We Are

Mighty Well

  • Shop
  • Learn
  • Journal
  • Join Us
  • Who We Are
Lyme Disease

Spoonie Stories: It never rains forever and the sun always comes out

by Ariela Paulsen November 2, 2016August 29, 2020
written by Ariela Paulsen
Mikayla-vacher-piccperfect-picc-cover-mighty-well1.png

Mikayla is no stranger to chronic illness. She gives us a little window into her world, opening up about everything from the hardest part of treatment, to frustration with doctors, to her personal super hero.

SHE’S BEEN THROUGH MORE HELL THEN YOU’LL EVER KNOW. BUT, THAT’S WHAT GIVES HER EDGE… YOU CAN’T TOUCH A WOMAN WHO CAN WEAR PAIN LIKE THE GRANDEST OF DIAMONDS AROUND HER NECK.


“OH YEAH?!”

I found out I had Chronic Lyme Disease 3 years ago in May 2013. I also discovered I had bad Candida, Epstein Barr, and multiple co-infections from Lyme – Babesia, Bartonella, Brucella to name a few. To top it off, I was just diagnosed with POTS and PVCs as well. So let’s just say I am no stranger to being sick.

My childhood neurologist diagnosed me with Lyme after seeing her for over 6 years – I was being treated for anxiety/depression and migraines. After finding out the real culprit of my problems, my primary care doctor gave me the typical doxycycline protocol but, of course, it didn’t work (I took doxycycline for 4 months and everything just kept getting worse). Finally come August 2013 my PCP referred me to Susan Neuber, a Lyme Disease Specialist. She is truly an angel on earth. I feel so blessed to have developed so much more than a dr/patient relationship with her; she has become like an aunt to me.

Collectively I must have seen at least 20 different doctors at this point. The majority of those have told me I needed a “psychiatric evaluation” … “you’re crazy”… “this is all in your head”… “you’re clearly just too in tuned with your body, you’re a hypochondriac”… “you just need some Ativan.” When you’re positive it is NOT all in your head, you can imagine how frustrating this can be. One of the most frustrating experiences I had was with a doctor that was thought of to be one of the“best” and “head of the CDC.” After the doctor had lectured me for an hour telling me how crazy I was and that “chronic lyme was not a real thing,” I was so fed up I threw my shirt off and was like:

“OH YEAH?! And where are these scratch marks from?! Are you seriously telling me this is made up?! He proceeded to look at my mom and in an almost disgusted way said,

“You’re daughter is in need of a psychiatric evaluation.. she is scratching herself.” I knew for a fact, as well as he, these scratch like marks were from Bartonella yet in ignorance he proceeded to call me crazy. I didn’t know if I wanted to cry or laugh so, of course, I did the best ugly cry you’ve ever seen and mom and I walked straight out of his office never looking back.

“STORM OF EMOTIONS”

It’s not just getting worked up at the doctor’s office, there is such a storm of emotions that come along with treatment and this illness. Not PICC lineonly do you have horrific physical pain that many days leave you bedridden, but you have the earth shattering emotional/mental pain. You feel worthless, depressed, not good enough, pathetic, you get intense rage outbursts, and days of uncontrollable sobbing (like crying so hard as if you’re mourning a death… the death of yourself.) But after the mourning (which may I say we are 100 and a billion % allowed – something everyone needs to remember!!!) you realize you are even better than you were before. I believe everything happens for a reason as messed up as that may seem to some. I believe there is some reason I was given this chronic illness, and because of it I have grown tremendously. You learn to more than appreciate and love the little things in life. You learn to slow down. Yes there are too many days when my life is just learning to survive rather than live but those moments I feel well enough to live… I can’t even begin to piece together how thankful I am for those moments. Just the other night I was eating watermelon in bed (and I am way protective over my watermelon YUM) and my mom was of course in bed with me and she wanted a piece so bad.. she ended up guilting me into giving her a piece… but because she was laying down/SO excited to actually get a piece of watermelon she choked on it in the funniest way–we could not stop laughing (Yah, I guess you had to be there)… It’s those stupidly silly moments that keep me going, that I appreciate the most.

“SECRET SUPER WOMAN”

Mikayla-vacher-piccperfect-picc-cover-mighty-well2.pngSo besides making me laugh when she chokes on watermelon, my mother is without a doubt my biggest support system.. I really don’t think I could begin to explain it/show how thankful I am for how much she supports me. As a baby you are fully dependent on your mother. They spend a huge part of their lives raising you and helping you grow (let alone 9 months in their tummies!). But after a certain age children typically veer off and go on with their lives, letting their parents have their time.

For me, I am at the age where I should be veering off, but I am pretty much fully dependent on my mom all over again. Of course she tells me all the time how she wouldn’t change it for the world but I still can’t help but feel so awful at times for everything I put her through because of being so sick. I tell her everyday how thankful I am for her and how I know I wouldn’t be here without her constantly giving me the strength to continue fighting on. She is my strength and I wish there was something more I could do to show her how thankful I am.

Not only does she care for me, but she works two jobs as a special education teacher and also at a group home on weeknights. You know how they make comic books/movies/shows about all the superheroes? Well, let me let you in on a secret… superwoman… yeah that’s actually not the real one.. she’s actually my mom ;). At times there are doctor appointments that must be scheduled when she is at work (yes she has gone beyond her sick days/vacation time at work because of me… she is still having to take time out and not getting paid now… my fault.. damn lyme disease)… during the days she absolutely can’t take out (mostly because of meetings) I am SO thankful for her siblings (she has 4.. 2 sisters 2 brothers) and of course my GRANDMA for being able to take me to my appointments.

IT NEVER RAINS FOREVER AND THE SUN ALWAYS COMES OUT.

 

Got more questions about PICC Line?  Join us in our Friends in the Fight Group to connect with our community. 

 


 

Lyme Into Lemonaid
0
FacebookTwitterPinterestEmail
Ariela Paulsen

Ari struggled with a wide array of health problems for decades before being diagnosed with EDS/POTS/MCAS/etc at age 25. She began writing as a way to heal while spreading information and helping others through their own journeys. She loves being part of the Mighty Well team, sharing the stories and strengths of spoonies everywhere!

previous post
Insider Tips for PICC Patients from PICC Nurses
next post
What Should You Do When You Get a Tick Bite?

You may also like

Don’t Forget to Check for Ticks! – 5...

July 16, 2019

A Multicultural Love Story With a Taste of...

December 5, 2016

Q&A With Lyme Warrior and Entrepreneur: Cat Seven

February 10, 2017

My experience at medcomp

September 14, 2017

Weakness Is Not Quitting

May 8, 2017

Lyme Through Sarah’s Eyes

January 30, 2017

Spoonie Stories: How You Can Raise Money for...

October 12, 2016

Mighty Close to Home: Featuring Tori and Lulu...

October 12, 2020

Meet Mighty Model, Olivia Chiacchia: Survivor and Thriver

April 29, 2019

Spoonie Stories: No One Believed I Had Lyme...

September 15, 2016

2 comments

Kevin Fitzgerald May 8, 2019 - 1:20 pm

Hi how are you? I read your story sounds like mine to the tee. I was wondering how you are doing now and the treatment you received. I live in Rhode island. Im asking because ive got this chronic lyme crap too. My email is Fitzs36@gmail.com

Ariela Paulsen April 20, 2020 - 10:57 am

Hello! Sorry for the delay. If you are still looking for community, or to chat about our similar experiences, you can always join the Friends in the Fight facebook group (linked here)! It’s private, so we can share experiences without it being so public. I hope you are doing well!

Comments are closed.

About Us

Hi, We're Mighty Well.

The mission of Mighty Well is to help patients and their caregivers turn sickness into strength. We are leading the global charge that changes the perception of patients from victims to fighters. We do this by improving the experience of being a patient. We create the products we wish we’d had: functional and stylish apparel and accessories that you can wear with confidence - and content that can help you get through the good times and the bad. It’s wellness you can wear.

Keep in touch

Facebook Twitter Instagram

Instagram

No images found!
Try some other hashtag or username

Recent Posts

  • Myasthenia Gravis Awareness Month

    June 22, 2022
  • Body Image and Mental Health in the Time of Covid

    June 16, 2022
  • Accessing Medical Supplies

    June 10, 2022
  • 4 Tips for Creating a Disability Inclusive Workplace

    June 3, 2022
  • Halsey Celebrates New Diagnoses

    May 26, 2022

Categories

  • Adaptive Wear
  • Chronic Illness
  • Featured
  • Friends in the Fight
  • General Wellness
  • Healthy Work Environments
  • Lyme Disease
  • Medical Devices
  • Mightier Together
  • Mighty Models
  • PICC Line
  • Popular Posts
  • Relationships and Support
  • The Undefeated
  • Treatment and Care
  • Uncategorized

Tags Cloud

Adulting Be Your Own Advocate blm Cancer Chronic Illness coronavirus coronoavirus covid-19 Daily Brain Fog Fix Diabetes Dysautonomia EDS feeding tube Feeding Tubes feeding tube supplies Gastroparesis holidays how does a feeding tube work immuno hoodie invisible illnesses Living Mighty Well Living With a PICC Living with a Port lyme disease MCAS Medications MedPlanner mental health Mental Illness mighty mask Mighty Pack mighty well mask Misdiagnosed neurodiversity New Years Organization Tips PICC PICC line cover PICCPerfect POTS Self-love self care case Support Systems TPN Tube Feeding

Our Story

Mighty Well - Founder - Emily Levy - Our Story

 

It all started with a cut off sock, a cute hockey player, and an 8 AM finance class. Oh, and a PICC Line. That moment inspired us to launch our first product, the PICCPerfect PICC Line Cover.

 

We know it stinks to feel defined by a diagnosis or feel like just a name on a doctor’s chart. Sounds like you? Read how our founder turned sickness into strength.

Recent Posts

  • Myasthenia Gravis Awareness Month

    June 22, 2022
  • Body Image and Mental Health in the Time of Covid

    June 16, 2022
  • Accessing Medical Supplies

    June 10, 2022

Join the Fight

Mighty Well's Facebook Page

Find us on Instagram

mightywell_

One positive that came out of the pandemic was tha One positive that came out of the pandemic was that many of us were able to have flexible working arrangements. As more states lift restrictions, heading back to work after months of working from home can be a huge adjustment for so many of us. Allowing time in our schedules for commuting, brushing up on our social skills, and making sure to have access to our medical supplies are just a few things we need to prepare for.

📸 Mighty Well ambassador @ameliablackwater headed back to the classroom last week and is working on finding a happy balance of working, socializing, and finding time for herself. 

If you've returned to work, what was the hardest part about making the transition back? 
.
.

#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Autism #WFH #RemoteWork #Telecommute #MightyWellMask #Pandemic
Before you move forward always be sure to check th Before you move forward always be sure to check the price tag 💵
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #MentalHealth #MentalHealthAwareness #Anxiety #Depression #PTSD
Life is full of uncertainties. But there will alwa Life is full of uncertainties. But there will always be a sunrise after every sunset 🌅

"The only certainty in life is uncertainty. I challenge you to embrace it. Even if it's just for a bit" ~@kali_rarerootedwarrior ☺️

Featuring: The Mighty Pack & Undefeated Hat
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Gastroparesis #EDS #MastCellDisease
We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
. 
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #ChronicFatigue #MultipleSclerosis #Lupus #SickleCellAnemia #Endometriosis #POTS
Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #IVIG
You can hardly wait to tell everyone what happened You can hardly wait to tell everyone what happened and  suddenly start talking and realize you don't know where the story is going...has this happened to anyone else lately 🙋‍♂️We've been there! Brain fog, perhaps the most universal aspect of illness, is exhausting. Cognitive disorders can be frustrating but take solace in knowing that you are not alone. We've all experienced that foggy feeling 🌫 and although it's not permanent, it can arrive quickly and definitely overstay its welcome. 

Looking for a little help getting the fog to lift? Our Brain Fog Fix Planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges and is brought to you with input from our Friends in the Fight® Click the link in our bio to find out more. 
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #BrainFog #ChronicFatigue #CognitiveDisorder
We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

📹 We are all smiles over this video of Mighty Well ambassador @rebellious_story & her dog Sherlock 😍
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #Community #Health #Wellness #ButYouDontLookSick #InvisibleIllness #ChronicPain #ChronicIllness #ChronicIllnessWarrior #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #LivingwithChronicIllness #Crohns #InfusionPump #MedicalBackpack #DiabeticLife #Gastroparesis #EnteralNutrition #Wheelchair #Tubefeeding #MedicalSupplies #TubeFed
The school year is quickly coming to a close and w The school year is quickly coming to a close and we wanted to send a Mighty shout out to all the students who worked so hard this year despite the challenges of COVID 🙌 We know that it was a challenging year with limited in-person learning, social distancing, and the requirement of face masks. We are so proud of all of you and you should be too! 💚

📸 Featuring The Mighty Well Mask
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Pandemic #HomeSchool #Graduation #SocialDistancing
I’m proud to be trans and I’m proud to be disa I’m proud to be trans and I’m proud to be disabled — because you can’t put a boundary on being yourself ~@thedisabledhippie
 
Happy Pride Month to all of our Friends in the Fight in the LBGTQIA+ community 🏳️‍🌈
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #Pride #LBGTQ #Transgender #LoveisLove #NonBinary #BiSexual #GayPride #Instalove
Follow on Instagram
  • Facebook
  • Twitter
  • Instagram
  • Pinterest
  • Linkedin

Mighty Well © 2018 All Rights Reserved


Back To Top