The Hagen Family’s Lyme Story and Fundraiser

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Guest Author: Julie Hagen

Hello everyone. We as a family, are in the unfortunate place of needing financial help from the kindness of others. Our medical journey started 9 years ago. Julie and Sid welcomed their first daughter Lexie into the world, a few months later Julie’s health started to decline. It started with joint pain and progressed from there onto other symptoms. It became difficult to lift Lexie out of her crib, twist and untwist baby bottles, and simple tasks became increasingly difficult. She began her search for medical professionals that could help find what was causing all of this and hopefully come up with a solution. After 3 years of doctors not having answers and sending Julie to specialist after specialist and having every test known to man, Julie lost hope and stopped searching. Thankfully just as Julie lost hope, a new found friend going through the exact same thing came into Julie’s life. That began Julie’s healing process of finding a specialist that determined Julie had Lyme Disease, Babesia, Bartonella and POTS in 2010. Since then she has also been diagnosed with Mast Cell Activation Syndrome, and RA mixed in there.

It has been a journey of fighting like hell to regain her health, having to close down her child care which in turn caused them to lose their house and move in with family. After hitting remission for 2 years, the Hagens were able to slowly work back up and start over again. They were able to finally move out of the extended families house and rent a town house. They also welcomed their second daughter, Emmie and Julie was able to work again. Things were going pretty good for them! Fast forward and Julie’s health has declined again and she is back to fighting to reach remission once again.

More recently 9yr old Lexie has been having her own health struggles. She was born with a metabolic disorder called MCADD (thank you Newborn Screening for saving her life) and also has Celiac Disease. This past month Lexie became very sick. She woke up one day sick and it just never really went away. She was throwing up, had high fevers, body rashes, weakness, fatigue, stiff neck, body pain, droopy right eye, sore/painful/swollen knee caps, dizzy. She spent 4 days in the hospital, came back for 1 day and then was back to the hospital for 4 more days, back home a couple days and back again to the hospital via ambulance. The last time she was brought to the ER she had a fever of 105.7 and was miserable. At this point she had already gone through 8 Iv’s because they kept infiltrating, over 17 pokes to try and get IV’s and labs, a picc line, brain MRI, and was really feeling traumatized. While in the hospital she had seen loads of specialists, had teams of medical professionals coming in, running tests, having her do exams with each professional, skin biopsy. No one had answers. She was medicated to control the fevers and finally put on antibiotics after I had been begging for it. I brought her to another specialist for a second opinion and it was determined she has Acute Lyme Disease with possible co-infections. Continue reading “The Hagen Family’s Lyme Story and Fundraiser”

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My Lyme – My Voice

Guest Author: Holly Roesing

I originally grew up in Connecticut – however, to my knowledge I was never bitten by a tick. I lived in the Northwest corner/Litchfield County for 30 years.

My husband and I decided to move to South Carolina after 9/11. In 2005, I was bitten by a tick, here, while on a 3 Day Outdoor Classroom camping trip with the 5th Graders at my school. The camp was located on Lake Marion, SC. I located a tiny speck on my stomach while showering and I knew I did not have a mole or beauty mark there. The speck was flush with my skin and it took everything I had to dig it out without taking my skin with it. When I finally removed it, I placed it on the sink and it started to walk. I had gotten the whole tick out. I immediately placed it in one of my Ziploc bags.

I knew enough to get the tick tested, but didn’t really know the symptoms. I sent the tick to my mother in Connecticut so she could drop it off at the Health Department. I ignored a few early onset symptoms like joint pain- and attributed it to doing too much (i.e., coaching/playing softball/being active). I did NOT get a bullseye rash.

Approximately 8-10 weeks later, the State of Connecticut mailed out the letter stating that my tick was a “Lone Star Tick” and it had tested positive for Lyme. I took that letter to a local doctor who didn’t know much about Lyme, but she put me on a couple weeks of Doxycycline. Continue reading “My Lyme – My Voice”

Share Your Story!

Author: Sairy Franks

You are needed! The Oak in the Acorn strives to amplify the voices of those with Lyme and other tick-borne illnesses, as well as amplifying the voices of our caregivers. I have been sick with Lyme Disease and co-infections for 16 years and have been writing about my experiences on this site and other places online. My intent has always been to raise awareness and compassion for people with chronic illness and their support people. However, after meeting and remaining connected to many people with Lyme throughout the years, I understand that I am just one person, and there are many perspectives and stories that go untold as I share only about my experience.

My hope is that those of you with chronic illness and those of you supporting us will submit your stories, experiences, perspectives, hopes, triumphs, tribulations, losses, beauty, and anything you feel drawn to share in a way that is healing to you. This could be in any format – words, pictures, artwork, music, videos, the list goes on. It can be your own personal story or also an article you write on any topic pertaining to chronic illness or Lyme. I know we all have a lot on our plates, so your submissions could even be old FB posts, journal entries, etc. If you’d like to write an “about the author” section for me to add to your article and/or a personal photo of you, that would be great! It’s totally up to you though.

Additional information I’d love to include for those who are interested:

  1. If there are fundraising efforts for you feel free to send me your story and info about how to donate…I will be happy to share that here!
  2. If you have art for sale, write something up about it and send it my way! I would love to post about it and direct more people to support you! Include any websites or information necessary so people know how to find your work.

Submissions or questions can be sent to thetruthaboutchronicillness@gmail.com.

Because so many of us are housebound, we need a safe place to share our voices and be vulnerable with the confidence that our truths will be met with love. I would love for this to be a community space to celebrate and mourn, as well as be a resource to people who want to show up for folks with chronic illness and our caregivers both in times of struggle and celebration, in ways that heal and support rather than harm or alienate. This is not only an opportunity for people who have been unaffected by chronic illness to learn, but for all of us to learn how to better support one another. All submissions are deeply appreciated.