Share on facebook Share Share on pinterest Pin Share on twitter Tweet When I was younger, before I was diagnosed with Lyme disease I was losing a battle with the Lyme Disease Monster in a war I had no idea I was fighting. Lyme Disease is evil, there is no other word for it but evil. Because it’s not just a disease of one area, you never know what’s actually happening to… Read More »How Lyme Disease Changed My Personality
Have you ever been so tired that just the thought of moving makes you want to put your head down and cry? There are days that I know I swim in the heaviness of exhaustion and my eyes beg to close for just a moment. I don’t dare because I know that I won’t open them again for hours. Sometimes when my Lyme Disease is rearing up, I fight this… Read More »Exhausted – A Lyme Disease Symptom
One of the hardest things about having an invisible disease is trying to make it through the day. Some days are routine and other days there are hurdles that you have to get over. But you always have to face starting over again the next morning. There are no days off, no vacation days, no holidays off from being sick. For years I tried to forget about having Lyme. I… Read More »Lyme and Spoons
Share on facebook Share Share on pinterest Pin Share on twitter Tweet I love to garden, but it’s not for the reasons you might think. Gardening helps me to fight Lyme Disease, improves my mental health, and helps me to feel like I’m contributing to helping the planet and my community. Let’s be honest, I hate mornings, and I really struggle to get out of bed early. Sometimes it is physically… Read More »Gardening is my best weapon against Lyme Disease
“When you know your ‘Why’, your ‘What’ has more impact, because you’re walking in or towards your purpose.” – Michael Jr. (This post includes affiliate links. Should you click an affiliate link and make a purchase I may make a small commission at no extra cost to you.) There are reasons for WHAT I do. I write because I feel I am… a Writer. But WHY I walk towards that… Read More »Why Talk About Your Challenges?
I’ve had Lyme almost all of my life. It’s a part of me and my day to day. I know it’s unusual, but often I forget that it is anything different from anyone else. But sometimes there are things I wish my friends knew about my life with Lyme Disease.
My battle with Lyme Disease began before I knew I had it.
Like many people I was misdiagnosed for many years before finally being diagnosed. Everything from MS to Anxiety have been on my medical records. Lyme is commonly misdiagnosed, leaving people wondering if their friends or family are making up their illness and the victim wondering if they will ever find relief.
I was likely a small child when I was bitten by a tick carrying my future inside it. My body has been fighting an invasion since I was in elementary school. I spent my 20’s wondering why I couldn’t keep up with people my age. Now I know.
Sometimes I need to rest to let it catch up.
My “Resting Bitch Face” isn’t what you think.
I live with pain. Every day, every hour, something hurts somewhere. Sometimes it’s an ache or a dull throb, other times it is the painful sting of inflammation. I manage it the best I can without meds because I know in the long run, the meds are very damaging to my other organs that are also fighting this disease.
I get tired, frustrated that I can’t get up and dance with my friends like I used to, even a little envious of a few of you who can enjoy a few cocktails and night of dancing. But my RBF is judged pretty hard even though I’m actually happy to be able to get out and hang out.
Sometimes I just can’t.
One of the hardest realities of living with Lyme is knowing that your immune system is awful. You have to measure your strength with expectations.
It is embarrassing to have to message a friend ahead of time who has been complaining about being sick to warn her that you just can’t be with her because you can’t take the risk of getting sick for the next few weeks.
Kids are cool. But they are also germ magnets and while post parents are used to their little ones cruising from one illness to the next. Sometimes I just have to take a step back from kid friendly events when I know it is flu or cold season in the schools. It isn’t because I don’t love the kids, but because I can’t give weapons to the bacteria I am already infected with.
I’ve even had to turn down coming to see new babies because the siblings were sick with the flu. It was awful.
I don’t go to the gym and I am okay with it.
These days among my friends, everyone is trying to get summer bathing suit ready or in “cruse shape” because some of us are headed on a trip together. They talk about their marathons, weekend gym dates, and diets they are currently on. And I smile and listen, I think it’s great that they are excited about it.
But I don’t go to the gym and I don’t diet.
Instead I am in physical therapy usually twice a week to try to keep my muscles from locking up or to settle the pain in a bad area. I have regular visits with my doctors to make sure my heart is staying strong and my liver isn’t getting worse. I’ve watched my weight climb up and down with each switch of my medications and cringed when I looked in the full length mirror. After a workout I’m exhausted for days and in pain for a week.
I’ve learned to accept that I might never get down to a 7 again, but I will keep fighting a disease that’s entire goal is to kill me. And when I look at my body that’s now patched up with scars from surgeries and battle, I know that I am thankful that today I am not bedridden and I can go walking through the Farmer’s Market to enjoy the sweetness of life without guilt.
You can talk to me about my disease.
I’m pretty sure that most of my friends know I have Lyme. But I don’t talk about it much. Usually because few people actually ask me about it.
I know they must have questions or wonder why I cancel at the last minute a night of dancing and fun. They just don’t ask. I wish my friends knew that they can come talk to me about my illness and I am happy to answer all of their questions. Lyme Disease is difficult, but harder when you feel like nobody understands you.
We didn’t ask for this, a life of questioning, doubting, and wondering how much longer. But a life with Lyme is still a life. Day by day, you learn to live your life beyond Lyme Disease. It’s is hard and frustrating. However, knowing you aren’t alone helps. Truth #1 – Forget It! Living with Lyme means your memory is BAD. You forget why you walked into a room, who that person… Read More »5 Upsetting Truths About Lyme Disease
I’ve been on muscle relaxers, pain killers, antibiotics, anti-inflammatories, liver support, thyroid meds, heart meds, and anti-anxiety meds. Western medicine hasn’t been able to help me. But CBD has changed my life and allowed me to live beyond my diagnosis. I was diagnosed with Chronic Lyme Disease in 2003 after years of living in pain, inflammation, and brain fog. I have been on so many medications that now there is… Read More »How I Use CBD Everyday To Cope With Lyme Disease
One of the more troubling issues that I have due to having Chronic Lyme Disease is that my brain has suffered some neurological complications. It’s worrisome knowing that your brain has been damaged by a disease without a cure. I often have numbness in my hands or random other places, pain that pops up out of nowhere, a weakness that comes on fast, visual disturbances, stiff neck, and severe headaches.… Read More »Brain Damage From Lyme Disease
I don’t do well in the cold, my Lyme acts up and everything hurts. My body becomes so sensitive to the cold that even my hair hurts. Cold sensitivity is a symptom of Lyme Disease and for me, one of the worst. Lyme hurts. It’s a painful, frustrating, scary disease to have. But what seems to be the worst symptom of Lyme Disease is fear and blame. You can’t live… Read More »Rage Against The Dying and Lyme Disease
Lyme Disease: The mere phrase invokes a sense of fear and dread of the unknown. This disease is cloaked in mystery, while at the same time, hijacking lives and wreaking havoc on previously healthy bodies. If you’re diagnosed early, your chance of recovery is fairly high, though the symptoms may never completely dissipate. However, if you’re diagnosed late – and we all know how we would rather push through problems… Read More »Essential Oils Showing Promise in the Fight Against Lyme Disease
I know that posts haven’t been as regular as they should be. I’ve just been a bit tired and distracted. Call it the holiday blues, the winter slow down, stress, or whatever name you want to give it. I’ve just been tired and distracted. Many of my readers know that I have Chronic Lyme Disease. I have this strong belief that the more you focus on being ill, the sicker… Read More »How To Manage Exhausting Holiday Stress and Chronic Lyme Disease.
Halloween is my favorite time of the year. I love all things Halloween, the decorations, scary movies, and the candy! But unfortunately, as Halloween grows closer, the weather gets cold. And while I know that cold weather doesn’t really bring on colds, the crazy weather does bring on migraines and sinus issues. I’ve been having a few Lymie issues due to the weather. Headaches are the worst part. Living with aches and… Read More »Moving into the darker months with Lyme Disease
“What’s the worst thing that can happen to you with this disease?” she asked me on our first meeting?
Looking back, she was asking a different question. She honestly had no idea what Lyme disease was and was asking for clarification. But I heard the one I needed to hear. I heard a challenge.
When most people meet me in person they have no idea I have Lyme Disease or the struggle it’s been to get to this stage where I don’t look sick. I’m actually thankful for that, it shows me that all of the hard work is paying off. But I’d love to share with you a few of the frequently asked questions I get about living with Lyme Disease and my… Read More »FAQ’s about Living With Lyme Disease
Share on facebook Share Share on pinterest Pin Share on twitter Tweet Brain damage or old age, I’m not sure which one. But I’ve noticed that my spelling has gone drastically downhill. I recently discovered Grammarly, a grammar and spelling editor, and I have to say that I have rediscovered my love of writing. This post contains affiliate links that help bloggers like myself to earn a living without costing… Read More »How I Improved My Grammar after Fighting Lyme Disease
First off, I’m fine. It was just a bad inner ear infection. But that night was a nightmare for several reasons, the biggest one… Lyme Disease. I’ve been fighting off thing ear thing now for a few months. It comes, and it goes. I’ve seen the clinic, nothing big. But because it takes me a very long time to recover from something as simple as a cold, I just get… Read More »Lyme Disease in the Emergency Room
I’m thankful and sad at the same time. I had to tell a friend that I couldn’t hug her when she came in the room. She was getting over being sick, not my kind of sick, a good sick… one that you feel shitty for a few days with and then move on.
Twice a year I get to go see my doctor and see what’s going on with my Lyme Disease. Sometimes those visits leave me feeling pretty frustrated. Not this one. When you live with Lyme Disease like I do, for as long as I have, you eventually come to terms that this is your life and you can either feel hopeless or find hope. I’ve been hopeless. In those years… Read More »Lyme Disease Check-up
I’ve been fighting Chronic Lyme Disease most of my life. Chronic Lyme Disease doesn’t have to mean the end of the world, just a new world and YOU oversee direction
When we got married, we had a lot of crazy things on our minds. For us, it was already complicated. We started things off by throwing every obstacle in the world at our marriage. We launched right into having a family, not a small one.. one cute kid and a dog, but a large one ending in 5 kids, dogs, cats, and a ton of debt that we managed to… Read More »In sickness and in health
Sometimes I need to slow down for a bit, listen to my body, understand limits are just chances to slow down and smell the flowers. I have Lyme Disease. I hate having to be held back by something so ridiculous. But, when I overdo it, recovering takes time. Last month we welcomed one of our older boys back home. It was time for him to get some new chances in… Read More »Slowing Down for Lyme Disease
I don’t feel like writing today. Well, not really. I am really tired. I’ve been traveling, for many it would be a nice long weekend trip, then back to work feeling relaxed. However traveling for me, and others with a chronic illness like Lyme disease, means that at some point I am going to crash. I don’t argue with my body. I know that even though I would like… Read More »Crashing and fighting back
Lyme Disease feels like living with a Magic 8 Ball. You really never know what you are going to wake up with in the morning. Sometimes you get lucky and it tells you to try again tomorrow and you have a really great day. Sometimes you get the iffy answer that you are just going to have to get dressed and find out what will happen, and other days you… Read More »Lyme disease feels like living with a Magic 8 Ball.
In honor of May’s Lyme Disease Awareness Month, I wanted to share a little bit more about this disease so that for those of you out there who are looking for answers or searching for home might find something comforting. Every day new discoveries are being made about Lyme disease. We will continue to fight for our lives, spread the word and demand that Lyme disease isn’t blown off by… Read More »More facts about Lyme Disease.
Through the years I’ve told my Lyme Disease story many times. But recently a new friend of mine asked me to tell her about Lyme and my story, and I realized that maybe I should tell it again. Getting the information out and telling my story helps to bring understanding and maybe even a step closer to finding a cure for this deadly disease. How it began I was bitten… Read More »My Lyme Story
I was recently asked about Lyme vs. Fibro, and I wanted to share here what my answers were for those who might want to know. Here’s the question – edited for privacy and space: Dear Dancing With Fireflies: A few years after a car accident I was diagnosed with FMS. I haven’t had anything I can take to treat it because I react in very negative ways to the medicine… Read More »What’s The Difference Between Lyme Disease and Fibromyalgia?