Guest Author: Becky Anne Michael, Caregiver
It had been the perfect night. As I wrapped up my fifth year of teaching, I went out to dinner at a local French restaurant with a group of students I had taught for four consecutive years. We dressed up, took our time in traditional French style, ate escargot, reminisced, talked about the seniors’ plans, and had the perfect night. Were my life a movie about the struggles and triumphs of becoming a teacher, it would have been the quintessential final scene, representing how far I had come as a teacher and how poised I was to live happily ever after in teacherland.
After our goodbyes, I got in the car and called A to say I was on my way home. He asked if I could stop by the grocery store to pick up a few things and I was happy to oblige. It was rather late, so I didn’t have a lot of time before the store closed. I drove over and started gathering items. However, as I grabbed a can of black beans, I noticed something. A smell. Perfume. There wasn’t anyone around me, so it wasn’t a person. I sniffed my hands. It was on my hands. I don’t wear perfume. I sniffed the handle of the shopping cart. There it was. The culprit. And if it was on the cart and then on my hands, it was surely on everything I had already gotten.
Already all too familiar with how intensely and easily perfume transfers from one surface to another, I knew what to do. I grabbed a bunch of plastic bags from the produce isle and made make-shift gloves. I replaced everything that was in my cart and continued shopping with bag-gloves as a barrier between the fragrance and the items I would bring home to my chronically-ill, hyper-sensitive partner. I finished up, paid for my items, and started bagging them (not the easiest thing, when you are using bags as gloves). As I did my bagging, I checked the items. In spite of my best attempt to keep the fragrance off of the items, it was on them. So, I called A and explained the situation. We decided that the only thing to do was for me to return everything. Because fragrance is so difficult to get off of one’s skin (and the fact that it was so late), there was no re-doing it. I just had to abandon my mission and go home empty-handed. Well, hands full of fragrance, but free of groceries. Continue reading “Yes, I Smell My Shopping Carts”
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”
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”
Guest Author: Jacob Stehlar (pictured in the middle with his brothers)
My name is Jacob. I’m 24 and have had the clinical diagnosis of Chronic Lyme Disease.
Here briefly is my story of diagnosis.
Overview of Diagnosis
The past year has been hell for me. I’ve had to quit school, I can’t work and everyday I deal with sickness. I was on the drug Cymbalta up until summer 2015. I was having urinary problems, heart palpitations, forgetfulness, and slight dyslexia on the drug and it was getting worse. I had been tossed around anti-depressants since I was 11, with none of them helping much until I tried Cymbalta. It helped for a few years. Then I started to have less and less energy to do things that I enjoyed, such as wrestling, football, and weight lifting. But I just stuck with it even though I didn’t feel good. This past summer I weaned off my medicine under my doctor. It was hell, I felt very angry, sad, racing thoughts, and so many other things. But then I started to feel more human, and I started to laugh and enjoy things more even though I had low energy. I started feeling more human and intune with myself, because for so long the anti-depressant drug was making me become apathetic and numb. I still was getting ill though. I had terrible brain fog. And my dyslexia symptoms were getting worse, where I couldn’t even read which used to be my past time. I gave up and tried starting Cymbalta again in January so I could start college again. I had been working on my bachelor’s degree in environmental science. It made me so nauseous I was vomiting for 2 days. So I stopped. This whole time I had been researching natural depression cures, and was trying lots of different things with not much success. I finally saw a naturopathic doctor in Late February. I told her all my symptoms, and I was surprised she wanted to test me for Lyme disease. I always thought with Lyme you get a rash, go to the doctor and get antibiotics for 2-4 weeks. That is not the case, only 40-50% actually show signs of the rash. And most tests done for Lyme are not very accurate. I started her protocol and did feel weaker during the detox time, and detoxing made my depression worse. I haven’t stuck to the protocol she gave me to a T. Especially with diet which is the most important thing. Because partly, I didn’t fully believe her, with depression in my family I thought it was just that. Which is what I’ve been told all my life.
Continue reading “Jacob’s Lyme Story and Fundraiser”
Guest Author: Adi Sattva
No. We are not tired. We are bone-split and quark-sucked.
A healthy person gets tired. I get bone-splitting, quark-sucking fatigue.
Why do I say bone-splitting? Because I’m so tired it hurts. This is not a metaphor. There is actual, physical pain. The kind that disintegrates.
Why do I say quark-sucking? Because I want you to understand the thoroughness, the depth, the minuteness of this enervation. It drains you down to the very detail of your molecules. It sucks life from the heart of your atomic structure. It steals the fabric of quantum level you. It takes what you have and then it keeps taking. Tired doesn’t cover it. Fatigue doesn’t cover it. Even this paragraph strains at the seams in its effort to cover it, and fails to cover it. Continue reading “My Tired. Your Tired. The Space Between.”
Guest Author: Lois Janish
I’ve decided to share my story you all are asking about. I’m going to guess it will be a read that takes almost a full cup of coffee but since I never pre-write anything (even my music and lyrics come in one sitting) I have no idea. Many who don’t know me really well will choose to skip it. Others who have blessed me by coming into my life somewhere over the past 24 years have bits of a story and more than ever are asking for the whole picture and how I’m to this miraculous point of recovering. As my story unfolds to my diagnosis and treatment things get pretty interesting 😉 If you or anyone suffers from Lyme or unexplained illness at least skip down to the bottom and read about the treatment.
So I begin….. Continue reading “Lois’ Lyme Story: From Struggle to Recovery”
Guest Author: Michal Victoria
Lately I’ve been thinking I’m just going to die. The worst part of this is that I have been sick since I was 6, so I feel like I haven’t done anything with this life. I haven’t loved enough, seen enough. accomplished much of anything. I know intellectually all that I’ve heard people say about not realizing the impact you may have unknowingly had on people. But it’s just not enough. I feel I will go and there will be barely a ripple. I wanted to affect more, do more. I hurt for all the people with chronic illness that are silently leaving us, fading away, all that lost talent and love and potential. Continue reading “Donate to Michal’s Lyme Disease Fund!”