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Story 141

How has Lyme Disease affected your life?

Apparently I’ve been sick since high school. I am now 35. I never had the rash or fever. I never had the tell tale signs. My high school life, into my twenties, my life consisted of conjunctivitis ALL the time. Chronic fatigue that no one believed. I slept my life away growing up. I have never been a person that wanted to go to the doctor for small things. I was young… I wasn’t dying… what could possibly be wrong with young, fine, me? 

In my 20’s still fighting fatigue, I started Olympic lifting and I felt great, but I’d always hit that fatigue wall. I thought I was narcoleptic. Then the pain started. My legs, below the knee… swelling, pain every time I worked out. What’s this now?? I ran a few mud runs, the last run my legs and ankles and feet swelled up and it did not go away. Two weeks later I was in surgery for chronic compartment syndrome. They never got better. 2018 my mom passed away, 2018 I had compartment surgery #2 on my legs, late 2018, I started vomiting and getting hives. Puking alllll the time at least 2-3 times a week for no reason. It was manageable because I would puke and get on with my life. Hmm what’s wrong with me? I puked for about a year… late 2019 I started to get heart palpitations, chest pain, this overall feeling of I’m dying, the heck. I was in and out of the hospital for months. The only thing they could tell me was that my thyroid was messed up. Got in levothyroxine, hey my puking stopped. That must be it. 

Months went by… into 2020 in and out of the ER, heart palpitations, chest pains, getting more and more dizzy spells, vertigo, headaches, muscle aches, weakness, fatigue, heartburn, numbness, memory issues, breathing issues, vision issues… what the heck is happening to me??? 

Finally my primary did a tick panel and I came back with Rocky Mountain spotted fever and Ehrlichiosis. What?! I was so surprised… the first thing I did was find a Facebook support group and found a Lyme literate doctor. I found out I have Lyme, babesia, hypothyroidism, EBV, among the others. FINALLY! Something!!! So I’m on the long road to some sort of relief. Listen to your body! You’re not crazy!

What inspires you?

My inspiration right now are the people that are trucking through these invisible Illnesses. Not just Lyme, but other autoimmune diseases. One thing I know I can do is be a trooper through this mess.

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Story 140

© Illustration by Life in Lyme Light.
© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

In honor of Lyme Disease Awareness Month, I wanted to do a post but also hesitated because to me and the hundreds of thousands of other patients who have walked this journey, our struggles are not confined to 1 month… for me it has been a process of nearly 12 years come May 19th and seven of those years have been an all out fight for my life.

How do you sum up the minutes, hours, days, weeks, months, and YEARS of some of the hardest and most difficult moments of your life into a little square? I honestly don’t think that you can… BUT what I do hope is to encourage those in the dark that there is light and hope.

That while I still have some treatment left (for other health issues and recovery from the damage) healing is possible, because the healing that so many of you have been praying for more than half a decade is truly happening and I know complete healing is coming.

The picture on the left was snapped years ago, before I started with my current medical team. I was once again in the ER and had just been told by 3 well known medical facilities that there was “no hope” for my case. I had also been told that I should be prepared to die in the next few months.

7 months after that picture was taken, I found my current main medical team and in my first conversation with my kind doctor, I told her that if I was going to die, to let me know. I felt at the end with no hope. She looked at me and firmly said, “You won’t die. We will fight to not only save your life, but get it back.” I immediately broke down in sobs. She went on to tell me that it would be the hardest fight of my life that I ever had and it was/has been.

I have been offered several times to write a personal book of my story and maybe someday I will, but it feels impossible to share the details of those dark and hopeless days… It’s been 5 years of intense treatment, thousands of oral meds, hundreds of shots (both and homeopathic), months upon months of IV antibiotics, hundreds of nutritional IVs, thousands upon thousands of vitamins, oils, and supplements, 1 PICC line, 1 Port, countless doctors appointments, exercise therapy, thousands of alternative treatments (including HBOT, acupuncture, reflexology, detox, – the list is incredibly long etc), hundreds of smoothies and daily cups of greens (something at one point I was told I would never be able to eat again), lots of tears… lots of laughter in pain… emotions and discouragement beyond words, thousands upon thousands of hours of prayer… but in the darkness there has been so much grace… 

The kindness of loved ones, of amazing parents, of my family, of the best doctors, nurses, MAs and staff that you could even imagine… of financial donations that allowed me to get treatment at the sacrifice to themselves, laughter, and most of all hope.

I recently got a 2nd opinion on one of the health issues I am still needing treatment for (Mycoplasma Pneumonia) and this well known doctor told me…”I’m sorry I don’t see much hope for your case…” I looked at him and actually smiled. I said, “I know you don’t and 2011 Rebecca might have agreed with you, but 2019 Rebecca is here to tell you I will visit you when I have beaten it.” Don’t let ANYONE tell you healing isn’t possible.

Thank you for your prayers which has gotten me to the picture on the right (taken recently)… A girl who is still in treatment, but truly healing and has seen the goodness of the Lord. I weep as I know what it is to be cared for tenderly by God. “The Lord has done great things.”

Oh… and Lyme Disease Awareness month? My prayer is to live in a world where it is not necessary because healing has come. #takethatlyme

Click here to learn more about Rebecca and follow her luxury travel adventures.

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Story 139

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

I was diagnosed after failing out of my third year of college. The doctors couldn’t pinpoint how long ago I had contracted Lyme, but estimated it had been about 2 years. I didn’t have energy to get out of bed and while there was pain, what I found most debilitating was the brain fog. I remember a moment during a bad Lyme week laying there feeling helpless and thinking, “This is so boring and I am sick of feeling weak”. I realized that if I continued to allow myself to feel consumed by my illness, I would never be able to get back up again. Motivated by this fear, I found the strength to keep moving. After 8 years of stubbornly pushing myself through tears and massive amounts of doubt, I am finally completing my BS in Clinical Laboratory Medicine! I still have days of bad brain fog and flares, but I have come a long way and I am not stopping.

What inspires you?

“Life before death. Strength before weakness. Journey before destination.” -Brandon Sanderson, Stormlight Archive

It’s something I whisper to myself every time things get tough.

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Story 138

How has Lyme Disease affected your life? What inspires you?

 I share many tools for transformation as I believe we are bio-individual. What works for one, may not work for another. 

Given my experience, research and state of disease, trial and error was the name of the game. This ultimately strengthened my intuition and shaped my life direction.  

When I discovered PSYCH-K® and Bee Venom Therapy, I felt I had a responsibility to share this magic medicine with others. I knew that people healing from a chronic illness could benefit from the powerful effects connecting mind, body and soul.

“Healing from Lyme teaches you how to unconditionally love yourself, others and how to stay in the vibration of love.” 

~About Adriana~

Adriana created an ebook called the “Beginner’s Guide to Bee Venom Therapy” detailing her journey and resources for getting started. She credits the honeybee for saving her life. 

Adriana is a PSYCH-K® Facilitator. P-K is a simple way to communicate directly with the subconscious mind, based on the biology of belief. This process allows us to transform and shift limiting beliefs and traumatic events within a matter of minutes. 

 To get the guide or book a 1:1 session, visit @somethinghealing somethinghealing.com

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Story 137

Floral watercolor painting in shape of butterfly
© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

May <3 Lyme Disease Awareness Month

I truly believe things happen to you for the Highest of All Good. I would be lying if I said that this hasn’t changed my life in the most drastic ways. Actually having to listen to your body, listen to your heart, be your own best doctor and advocate, say no a million of times, lose people who aren’t adding to your healing, being your own caretaker, and still participate in life outside of your healing is intimidating to most, this isn’t for the weak. 

That is one thing I have learned along this journey, I look at myself in another light, I am one of the strongest people I know, along with all my other lymies and other people, suffering but choosing to never give up. It can be the easiest thing to become a victim to your disease, but I’m living each day to be a reminder to others that you’re so much more and this is just a part of the journey. It’s okay to love and hate it. It’s frustrating at times, it’s soul opening at others. I wouldn’t wish this upon anyone, but I also wouldn’t wish a different life because it has made me the most resilient.

When your body goes through so much and fights for you everyday, there really isn’t more to be thankful for besides the fact that you have this power inside that is stronger than you. Peeling back layers and layers at a time to reach the true Divine. One day is coming, coming sooner than I expect.

I’ve been fighting for the past 5 years and have gained full faith in my intuition to lead me to the right treatment for me, and becoming my own best doctor. <3

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Story 136

How has Lyme Disease affected your life?

For those of you who do not know me and my story… My name is Lisa and I am batting late stage chronic and neurological Lyme Disease and several co-infections. I was misdiagnosed for over 3 decades. I was told over the years that I have Fibro, RA, Chronic Fatigue, Asthma, etc… Little did I or anyone know that I contracted Lyme when I was a teenager and it has been the cause of most of my symptoms, unnecessary tests, MRI’s, scans and surgeries. Now in my late 40’s, I was scared yet relieved to finally have a diagnosis. I was scared yet happy to finally have a path to follow. My healthcare team and family have been amazing and I quickly learned who would be there for me during this difficult time. <3

 Having an invisible illness makes it even more difficult and frustrating during this battle. People always say… you don’t look sick… yesterday you were fine… you look great… etc… What they don’t know is that some days it is a struggle to get out of bed, or do simple tasks like take a shower, cook, or go for a walk. Other days (better days) it feels so good to feel happy, to have energy to get a few things done, to visit with friends and have fun with my family.

It’s so frustrating that Lyme and other Invisible Illnesses are not recognized the way they should be! We may not show physical signs of an illness like losing our hair, wearing a cast, or anything obvious to the eye, but these invisible illnesses are destroying lives – attacking their bodies one organ at a time, destroying marriages and relationships and/or losing hope because they are not being heard, they are not being diagnosed and they are not being treated properly.

What inspires you?

I keep reminding myself to stay strong… to stay positive… to look at the positive in every situation. It is challenging at times… especially as I am going through 9 months of intense IV treatment. This is my 4th month of treatment. One minute, I think I can’t believe that I have 5 more months to go… how am I going to deal with the pain, the herx reactions, the debilitating fatigue, the nausea, etc… but then I try to remind myself… heck yeah… I am half way through… I can do this! I have had a lot of ups and downs. Some days I feel like total crap and other days, I feel somewhat human and it feels so good to get out of the house and to feel the sun on my face. It is the little things that make me happy… that help me push through… that gives me the strength to battle this horrible disease. I truly appreciate my family and friends (old and new) who have been so incredibly supportive, who have been there no matter what and of course my new fellow warriors! We can do this!! We deserve to be healthy & happy!! Let’s support one another and battle our invisible illnesses together!! <3

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Story 135

© Illustration by Life in Lyme Light. Sunflowers
© Illustration by Life in Lyme Light.

How have Lyme Disease affected your life?

Hey everyone! My names Megan and I got diagnosed with Chronic Lyme Disease in Summer of ‘18. My doctor believes I got it congenitally from my mother. I first noticed signs of Lyme disease when I had a lot of neurological problems (slurring speech, falling, loss of balance, severe brain fog) and I knew something was off. I went to more doctors than you can count on your fingers and they all told me the same thing, “Maybe it’s just psychological, I think exercise and diet will help.” [eyeroll] I was not going to accept this answer. I knew something was wrong. 

My anxiety began to spiral downhill and I knew I needed to seek the right help fast. I started going to the Lyme Clinic that my mom goes to (she also has Lyme) and my whole world has been turned upside down. Some in a good way, some not, but overall they did find out it was Lyme and I am being treated for it accordingly. This whole journey has been a process, but I try to count my blessings each and every day that I am finally seeking the help I needed. 

What inspires you?

Just a piece of advice for anyone struggling with Lyme Disease, don’t give up. The healing process is long and hard, but it helps to surround yourself with a strong Lyme community. Love ya’ll <3

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Story 134

Illustration by Life in Lyme Light, wood butterfly
© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

By now, many have either heard of Lyme disease or, perhaps, have a friend or relative who’s cousin has it, has had it, or something to that effect. As hunters, we willingly put ourselves at risk. To avoid Lyme disease, many doctors advise staying out of the woods. Well, to nearly anyone reading this: for hunters, that just isn’t an option.

Fall of 2018 marked my 10th season hunting. Completely self-taught, never guided, just pure grit and worn-out boot leather is what I have to account for the majority of my success over the years. Having no real history with the outdoors and hunting (my father hunted a couple of times when I was very young), I have made all of the mistakes, but I’ve learned from them, too.

One of the biggest lessons I’ve learned from…

About three and a half years ago I had one of the best seasons I’ve ever experienced. I had killed a cougar and a bobcat from the same tree on consecutive days, then made a last-day, last-ditch effort to kill a late season elk and I successfully notched a tag there, too. And, I accomplished all of that with my bow. I can’t recall which pack out it was, but I do remember extracting a tick from the front of my shoulder. It was in that spot under your backpack strap that is bound to be irritated anyways, so it was easy to miss. Once I pulled that tick out, I discarded it and didn’t think anything of it. That was my detrimental mistake. Not that I threw it away, which was also a mistake, but, mainly, because I didn’t think anything of it.

Fast forward about a month later and I was extremely ill. Fevers came and went at random similar to that of the flu only worse without any stomach or gut issues. My blood pressure was also spiking, causing me to feel faint or lightheaded at times. I would wake up in the middle of the night feeling like my chest was going to explode in pain, heart racing and pounding so hard I thought I was experiencing cardiac arrest. This went on for about three months with no rhyme or reason to it at all. I saw doctors who just thought I was “aging” and needed medication to control my blood pressure, which just “masked” the symptoms. Meanwhile, I was 28 at the time and in probably the best shape I’ve ever been. I ate healthy, led an active lifestyle, etc. I had a hunch that Lyme Disease was the culprit, so I asked my doctor to order the test. After the end of that summer, the fevers had subsided, I was on three medications to control my blood pressure (which we later learned I didn’t need) and I was left with just an odd sense that something was wrong even though I was assured nothing was.

For the next year and a half, I experienced some on and off mild depression and anxiety that I really couldn’t explain. Some days I would just sit and not do anything at all in an odd trance-like state that is still hard to explain. Then in February 2018 the state of mind I once knew as normal was gone, long gone.

Out of the blue one day while working, all of a sudden, I had this overwhelming feeling that I was going to cry. And not just a couple tears, but it felt as if someone had just called me and told me that something terrible had happened to a loved one even though nothing of the sort had. I couldn’t control the feeling. Nothing gave me any relief. I tried every at-home remedy, did everything the doctors asked of me, still nothing. At that point, I knew something was wrong. Chemically, something had to be messed up. If I couldn’t get myself out of this weird depressive mood, what would? I haven’t been the same since.

It took about another four to five weeks of research, struggle and anguish, seeking out doctors to no avail, finding doctors with six-month to year-long waiting lists and, then, finally finding a doctor that would listen.

She successfully diagnosed me with Lyme disease via blood test and I finally had some relief. I didn’t know much about Lyme disease, but I was happy to have an answer.

Throughout the next few months, my disease progressed rather rapidly. I developed a startling reflex in which sudden noises and movements—even light flickers—would startle me. I was having seizures and panic attacks simultaneously and uncontrollably. Sometimes, while driving, I would have to pull off the road to endure a 30 to 90-minute convulsive seizure, then continue on my way. The depression is unspeakably dark and has been so deep and just overall nasty that I had to ask my wife to hide our guns. Most people will not want to hear this, but it’s the truth. I’ve gone through it; I’m glad I’m here. I wouldn’t want it any other way, but I get it. Recently, one of our own in the hunting community took his own life and, although tragic, I can honestly say I understood. The state of mind a person goes through while suffering from the sort of depression that puts you in that mind frame is not easy. I haven’t been able to do it alone.

Along with the depression, anxiety, seizures and all that other fun stuff, I also started to lose the nervous system function on my left side. I started to drop things with my left hand way too often. I would trip over my own left foot constantly. My gait was off. One of the doctors who eventually helped get me back to semi-normal said that a lot of the infection was in my brain, which also explained the insomnia. On most days, I have a buzzing like sensation in the left hemisphere of my head, down my neck and into my upper back. The best way I’ve been able to explain it is the sound of neon lights buzzing. That keeps me from sleeping.

Oddly enough, the moon has also been a factor. You might think I’m crazy, but I’ve patterned it out over the past year and, when the moon is full, the week surrounding it is hell for me. I typically will get two to four hours of sleep a night, I will burst into tears at random, the startling reflex will be on red-alert and, then, the depression will creep in. Usually, about three to four days after the full moon things, I start to feel okay again.

Honestly, I could probably write a novel on the various symptoms and how they have affected my life, but what I really want to accomplish is just some general awareness. Something I wish I would have taken more seriously a few years ago, could have saved me tens of thousands of dollars and years of a consistent struggle to feel decent on the day-to-day.

So, what should you do if you get bit by a tick?

Well, there are about a million old wive’s tales and theories on what to do. I’m not an expert by any means, but I have done about 200 hours of research and I can tell you a couple of things to look out for in case you have a run-in sometime in the future.

Out of all the research I’ve done, the best and most uniformly recommended way to extract a tick from your skin is simply to use tweezers, grab the tick from the top and bottom of its head and slowly pull it out. Theoretically, it should dislodge and be able to be placed in a sealed container. This is what I did not know before, but you can actually mail that tick to a testing center and they can tell you whether or not it carries Lyme and/or its co-infectors. However, the tests are not always accurate, I would also caution that you be mindful of your well-being. If you feel flu-like at all—body aches, headaches, muscle aches and cramps, which are otherwise inexplicable—get to your doctor. The doctors used to say just look out for the “bullseye” rash; however, that has been proven to only be true for less than 40% of people who contract the disease.

Another idea is straight prevention. Picaridin and Permethrin seem to work the best as repellents. I’ve also found an essential oil mixture called “Bug Bouncer” that works pretty well. Yet, you can only spray your clothes and wipe your skin so much. The best thing to do is just check yourself, especially in the spring when they are the densest.

Now, I’m truly not writing all of this so people will feel sorry for me or give me attention. I want the attention to be brought to the hunting community. I want people to know just how bad it can get.

I never imagined a bite from a tick could change my life in such a dramatic fashion, but it did. I want my fellow hunters to be aware of the dangers and not take it for granted. For another look at the impact that ticks can have on hunters, you can check out this article, Tick awareness and prevention for hunters written by Kristen Schmitt.

In the end, be your own advocate.

Read more articles by Justin Klement on goHUNT.

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Story 133

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

My name is Shymala, I am 34 years old. I grew up in Cape Cod, Massachusetts. I was diagnosed at the age of 30, but I have been sick since the age of nine. At the age of 9 I was running 5ks, seven, eight miles a day, grew up with a brother, sister, playing with them outdoors all the time. Came inside, did tick checks like crazy, grew up with a mother that was very into coming inside, drop your clothes, check us in the back of the necks. Of course being dark hair, she would check my scalp like crazy, under the arms, behind the knees. I don’t know if she really had us in white because of the ticks, but I mean, she was pretty thorough, she was just really scared of Lyme disease. But like I said, being an avid runner, I could have gotten bit by a tick on a trail, who knows. Back in the early 90’s my mom took me to several specialists, I was told it was the same experiences that people get today; chronic fatigue, so stop the running, she hasn’t grown into her body, she needs to slow down, you know, she’s running seven to eight miles a day, and she’s, uh, nine years old, ten years old, she’s not ready for this. She’s an overactive child. I don’t know what that means. She’s anemic, which you know, was true. I’m adopted, so we had no genetic background on me.

So she took me to a Hematologist and a-not quite Geneticist, but something along that line, and he said oh, well maybe she has Thalassemia, which is similar to Anemia, but really common in Mediterranean’s. So, my mom said well, we’ve explored kind of all our options. This is just something we’ll have to deal with — you learn to deal with chronic fatigue, you’ll deal with Anemia, this is it, you know? I’m really motivated, I don’t really give up. I continue to just keep going. So I continue to run, and I continue to go to school, honor roll student, just continued to fight and continued to be tired, and just kept going. And then I had a knee injury doing a [SIGH] 5k, maybe my freshman year of high school. I fell in a pot hole and I thought that was why I injured my knee, and that kinda slowed down my running for basically forever. Went to St. Mary’s, had to take a semester off my junior year, I was so tired, couldn’t get out of bed, again, chronic fatigue. Graduated college a year late, ’cause of that semester off. Went on and got my teaching credential that was all I ever wanted to be was a teacher.

I’m sure you’re aware of how many hours a teacher works. I worked in underprivileged schools so those hours are horrendous. I was tutoring a student when I fell asleep reading to the student, and they asked me if I was alright. And I said yeah, Ms. Hoffman just must be a little tired. And I was home one night, signing off on report cards, and I literally was just dozing off, and it had to have been like 6:00, 7:00 at night. The Reverend had to take the papers, move them away, like literally carry me to bed. He said this just is not right. You’re 30 years old, something’s just not right. So I walked into my GP, told her this is not right, and she said well, you’re healthy. I mean, everything’s normal, you just had a physical. And I said I don’t care what the physical says, I know my body, something is wrong. I said I want you to run every single test, and she said well, I can, but I’m gonna run tests that you don’t like. I said I don’t care. And she said but you have symptoms of syphilis, AIDS, Lyme disease, I said I don’t care. But I don’t have AIDS, I don’t have syphilis, and I don’t have Lyme disease.

So, I walked over to Lab Core, had my blood drawn, she called me back two weeks later, she said, you’ve been through Lab Core western blot, looks like you have Lyme disease, despite how inaccurate these tests are, I still wanna put you on a month of Doxycycline. I tested positive for the babesia and then tested positive for bartonella. So babesia, I had to be treated with an anti parasite medication. Bartonella is another set of antibiotics in addition to Lyme antibiotics. We did 30 days of Doxycycline. It was the worst month of my life. It makes you awfully sensitive to the light, I was vomiting, couldn’t get out of bed for probably 20 of the 30 days. It’s frustrating because it’s like the saying, you know, you’ve gotta feel worse before you get better, and you truly do. So I went back to my GP, she asked me how I felt, and I said I don’t feel any better. And she said I can’t do anything else for you. And I of course took that very personal, thinking like she was tossing me out as a patient and realized that was the best thing she could have done for me.

And then I went to a Lyme literate doctor. So, when I first saw him, I stopped going to work for basically a month and a half. I had no feeling on the left side of my body, from my fingertips up. Within about six, eight weeks I was back to work full-time with work accommodations, so in my eyes he was lifesaving to be able to return to work 40 hours a week. Two and a half years oral antibiotics, very, very strong regiments. One symptom would be better, and then a new symptom would come, which is another very frustrating part of Lyme disease. And then after two and a half years, we parted ways. I went to another Lyme literate MD and we were doing oral antibiotics and natural protocols together. The combination causes a lot of Herx reactions which, you know, is a detoxification of the Lyme fibers. Same thing, very frustrating path of some symptoms getting better, new symptoms coming along. After the second Lyme literate, I was getting really, really frustrated that I wasn’t making a lot of headway, so I was just doing some research, and found a naturopath in Connecticut about an hour away. You can just slide right into treatments to some of the top LLMD doctors on the east coast, I was blown away, for half the cost of what you pay on the west coast. 

In the past I was just on a few different herbs and drops. Now I’m on about four tinctures, so they’re like drops you put in your mouth, or you swish in water and throw in your mouth. And then I’m on about seven or eight oral supplements, herbs, and then a couple herbal syrups, and it must be that they’re gentler on the stomach, I tolerate them much, much better. And I, overall I just  feel better. I mean I’m not supposed to be working over 40 hours a week, but I’m able to if I really have to, on the natural supplements, I’m able to walk five miles a day, a couple times a week. So, I have — they say — Lyme in the brain, so it causes brain swelling. It’ll cause neurological issues, so a lot of confusion when you talk sometimes, a lot of repetitive speaking and to be able to continue working and engage in a normal lifestyle. My first LLMD had prescribed me a pill that’s used for patients with narcolepsy, people in the military, they have work shift disorder. So if they work really odd shifts, you know, 3am on, that would mess up their sleeping routine. It’s been a game changer for me, it has allowed me to have a normal lifestyle. It has allowed me to be able to stay up to nine, ten o’clock at night and maybe actually have a date night with my boyfriend and be able to get up at five o’clock in the morning and go to work.

My joint muscle pain really became noticeable the past five to seven years, and that might be because I had to stop working out, I wasn’t running as much, I wasn’t as active. I primarily have it on the left side. I treat it with a Fibromyalgia medication. I also treat it with a series of natural medications through my naturopath. I do a lot of stretches, see my Chiropractor. I do a lot of soaking, detox baths hoping just to loosen up muscles. I live on a heating pad even in the summer. I sleep with a heating blanket, so every night I will sit and do different types of mind puzzles, just to keep my brain active, or push myself to do some sort of reading. It’s really frustrating, I get really angry, that I’m not sharp maybe as I used to be, but it’s super important to keep the brain active. And try to stay positive. I have overcome many symptoms, and then I have gotten a lot of old symptoms back. They come and go sometimes, and it gets really, really upsetting, it’s super upsetting.

Last weekend for instance my Palsy came back, and it was devastating. It’s been gone for nine months, I thought we overcame that. So next Friday I have my consultation with my Neurologist and guess what we got to talk about, my Palsy’s back. I get to talk about that. I did a half a smile, my eyelid could barely open, I get random blind spots. I just go almost blind in the right eye. I’ve gone about three or four months, five months perfect, absolutely perfect it’s been fine. The last six weeks, it’s going blurry again. And it’s scary because, do I wanna get in the car and risk somebody else’s life? On the right side I’ve had seven days pain free, and that’s pretty darn awesome too. You have to look at those things and you’ve gotta stay positive. I’m in a Lyme chronic illness retreat group for healing and getting to know yourself. I have met four girls that are just amazing, and I don’t know what I’d do without them, and that’s the best part about Lyme disease. If we haven’t heard from each other almost within two days we’re checking in on each other to make sure we’re alright. We’re very in sync with each other, worry about each other, somebody’s depressed about something, we’re there.

I have been with my boyfriend for five years, of course pre-diagnosis as well. He does not have to go through this with me, and he’s there through the whole thing. So he’s there a lot for me. And I have an amazing family. I think in regards to my own child expectations, I’ve had to learn to lower them a bit, and understand that it’s okay some days to say no. It’s okay some days to just have an average day, and it’s been really tough. But I have to do that to just maintain and not end up having a week in bed. It was very challenging for my boyfriend at the beginning so it was very difficult to not be out till two, three in the morning to get adjusted to you know, order in, monopoly, movie night. I think it’s a lot easier for people that see it every day, to adjust their expectations. They see you on your good days, your bad days. I have a manager that is just totally understands a chronic illness, he can just tell when I’m having a rough day and will just come over and say, pack up your stuff, go home, and work from home.

 The financial impact is really difficult. We moved out of a two bedroom, two bath apartment, into a one bedroom apartment. I’ve had to choose which treatments to better my health, which is the worst part. I mean, it’s awful to say oh, well this treatment, because I can afford it. I mean, nobody should have to do that, we’ve had to stop going on vacations. My vacations now are going back east for me medical treatments. That’s what my PTO time is for. I feel like our whole savings funds have gone towards my medical. I want patients to understand that you’re your own medical advocate, that’s the first thing, and you understand your own body, so you have to fight for yourself. That’s it. Plain and simple. Two, we need to increase Lyme awareness. People need to understand this disease, we need to get so much more awareness. I’ve come really far. I will probably always have up and-ups and downs. I’ve been fortunate to have an amazing family, an aunt that allows me to come stay with her while I get treatment back east. A wonderful boyfriend, and amazing supportive friends, and I think that is what allows me to stay determined and focused through my long journey and treatment. I would hope more patients will do that in the future to help with their healing.

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Story 132

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

No one believed me. Until physical symptoms started to occur that were visible I suffered alone. It felt like being a tortured prisoner in my own body. I communicated how I was feeling with others (doctors, friends & family) for over 15 years. The more I tried to explain myself to loved ones and medical professionals, the Moreau symptoms and the pain was invalidated. I was told to see a psychiatrist. I went to many. Then I began a journey of collecting over 1,000 medical treatment papers. I felt like a guinea pig. I heard, “Sorry, I can’t help you. There’s nothing I can do until you have a proper diagnosis.”  I began to invalidate my own experience because nothing showed on routine testing and my health plummeted and nearly died multiple times. 

I decided I’m a warrior. I decided I wanted to survive. I decided I would stand up for myself and speak my truth. I decided enough is enough. I told myself I am worthy of proper health care, and I will receive it. I reclaimed my personal power. I began to allow others to see me as I am, share my story and hear my voice. Yesterday I had surgery to remove a large lymph node in my groin. I had a biopsy done to check for lymphoma. This disease is very real and it’s brutal. I never felt such validation for what I’m going and have been through. Keep going warrior, you can.

What inspires you?

“Smooth seas never made a skilled sailor.”

“Ships are safe at harbor but that’s not what they are made for.”

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