What does it mean to lose your life to a Disease?
I have a hard time being kind to me; patience is not a lesson I learned while growing up. My mom was very strict. She had no tolerance for kids nor that they took time, patience, nurturing and love. I am having to work on unlearning what she taught. There was no time to understand why I was always sick, tired and depressed. I have Chronic Lyme Disease, I have had this disease for over 34 years now. I can say this with certainty. Lyme is no JOKE! My days of powering through are gone. Maybe that is a good thing!
This month is Lyme Disease Awareness. It’s tough for some folks to understand yet this story needs to be told. To me, Lyme is worse than Cancer. Yes, I have lost loved ones to Cancer, but as I watched them fight, I saw where critical mistakes were made that did cause their demise. I am not trying to be hard here but, most of those who die of Cancer did not die from Cancer; they died from complications of the treatment they received.
There is no cure or treatment for Lyme. No course of action to help those of us who are suffering. No test is 100 percent and most of the time we have to be suffering for years before any test will show, what the Lymie already knows. I am a Lymie.
It’s terrible that Lyme uneducated Doctors, as well as some individuals, do not believe going by symptoms alone.
It’s easy to ignore a Disease not studied. Lyme is often a severe and chronic illness that the medical community at large has misunderstood at best, and at worse unacknowledged. How can doctors treat a disease if they don’t believe it exists? They can’t, which is why far too many people have been suffering from Lyme complication.
I have lost my ability to drive, I can not work from home, and yet if my partner dies, I am… well I will not have a home or food. I can not get disability because my disease is not recognized.
I spend my time spreading information about Lyme Disease. I gather as much literature as I can so I can pass it to an area I know will benefit. The closest camp hosts in my mountain areas, I’ll be passing out info around to our state and federal parks. I can only do what I can do, and that is to try and teach others about this deadly disease.
Can every day with Lyme is an adventure? It can be. Where I didn’t forget your Birthday or a Holiday, I will not remember now. I have no idea from one day to another how I’ll be health wise.
Sleep is a blessed gift, yet I do not sleep anymore. I go for weeks not seeing even four hours in sleep.
I started trying to exercise again. I am in so much pain though so it is a challenge to do any. Even walking can seem like an Olympic challenge.
My food sensitivity change from day today. What was okay one day is nothing but horror on my intestine the next time I eat it. My food changes something in my chemistry, and I will have a lot of die off and then have a Herxing reaction. Herxing is where many Lyme Spirochetes die off, and my body can not handle the overload of toxins, and I become very sick. I think of Lyme as bugs. There are days I piss off my bugs just by eating organically and drink plenty of clear filtered water.
Every day is never the same. Stress can cause a lot of changes in my body, from a lot of pain and digestive problems to emotion and mental upheaval. Lyme has a way of causing Depression, and I sure have my days where I wish I were not here on this Earth plane.
Lyme Disease symptoms I have on any given day.
Severe headaches and neck stiffness
Digestive issues, Diviculitus, IBS, inability to digest food.
Swelling in my Lymph nodes
Arthritis with severe joint pain. Stiff shoulders and back.
Pain in tendons, muscles, joints, and bones
Heart palpitations or an irregular heartbeat (Lyme carditis)
Episodes of dizziness or shortness of breath
Inflammation of the brain and spinal cord
Shooting pains, numbness, or tingling in the hands or feet
Problems with short-term memory.
I have dealt with these symptoms all my life, I managed, but after surgery, they became even more pronounced.
I am seeing some improvement after years of cleaning up my diet, eating all organic. I do not eat processed foods anymore, no soda, and I make sure everything I cook comes from a clean natural source. It takes a lot of time, patience and work to help my body to deal with this disease. I use mushrooms and herbs to help me kill off my Lyme Bugs, but I have to do this at a snail’s pace. If I detox too much, I can end up in the hospital. That would be the worse thing I could do. Hospitals are a torture chamber for Lyme Patients.
I am too far away from Lyme Literate doctors where I live, and everything I use to help myself is out of pocket. I spend thousands of dollars a year on food and supplements to help keep me alive. Insurance doesn’t cover what is helping me and like I had stated earlier I do not get any help. I have had to go to school and educate myself on my anatomy, chemistry, and biology. I learned how to make my herbal medicines and how each herb works. I get up every day and learn how to help my body build its immunity and how to help my body heal.
Lyme Disease is not just a physical disease. It is also a mental and spiritual challenge as well. What I think I have healed from that was in the past, seems to steal away in my mind and cause we me stress later. When I’m crazy happy or in love, may only last an hour or a half of day.
There are days I can’t walk or think. I can only sit and cry. There are days I can run and feel such joy. I can not drive because of the passing cars and because my brain sees everything in a curve. I feel like I am falling while sitting in my chair.
I get motion sickness from watching specific tv programs. I love to write and speak, but there are times I can barely make a sentence or explain what I am feeling.
The pain I deal with from day to day causes me panic attacks. I have PTSD from the brain fog and fear I live.
Life means more than I can convey, yet there are days I don’t want to wake up. It is more comfortable to sleep than to go about my daily chores. Once I can fall asleep, I do not want to wake up. It is the only time I do not hurt or have to deal with Depression. I have become a creature of the night, and sleep only comes in the daylight. I hate the night though. I am all alone with the sounds of the night, while all sleep peacefully. It is so lonely, and thoughts of darkness keep you fearful of the unknown as your mind plays tricks.
I am afraid all the time. Lyme has a way of changing the brain chemistry, and you live in fear day in and day out. I hate when my mind only sees the horrible things that can happen.
Lyme and its numerous co-infections can mimic or cause virtually any medical, neurological, or psychiatric condition. It is called the “great imitator” and has been vastly underdiagnosed in the U.S. due to inadequate testing methods and general lack of acknowledgment by the medical community. A nasty relative of the STD syphilis, Lyme causes a multitude of medical, neurological, and psychiatric impairment issues, yet is much harder to cure.
Lyme becomes your personality, your emotions, your memories, and it takes over you.
I am writing my story to share with others what I have had to deal with and learn.
After 3-6 months in the body, Lyme has taken hold of the immune system and becomes difficult to eradicate with antibiotics alone. A study published in 2012 showed that Lyme disease has tenacious survival skills. Inside the body, the Borrelia organism (Lyme) forms a biofilm, which allows it to continually rearrange its structure, hide, and resist environmental conditions such as antibiotics.
I do not want sympathy. I want to help find a cure. Right now the only way to do that is through education. It is time for all of us to start to listen actively. We need to look at the ugly and help those who are going through this. No more is it okay to put our heads in our phones, tv’s or computers and pretend we do not see or hear the suffering.
How can you help? Listen! Hear us and share what you hear from us. Let Lyme Disease or any other illness be a topic instead of what Donald Trump twitted that morning. Share this blog. Take action to keep you, your kids and animals safe from this disease. There are many all natural bug repellents out there. Take a shower and comb your hair once you come in from outdoors. Wear light clothing and stay out of high grasses. If you get a fever, a rash or flu-like symptoms have them checked out. Do not allow your doctor not to let you take a test for Lyme. Seek other doctors if you can’t get answers from your primary doctor.
Ticks are NOT the only carriers. Any blood-sucking bug out there can have a potential of being a carrier, a deer fly bit me, and two ticks, any one of those could have been a host of Lyme Disease. I became very sick after the deer fly and have a scar from that bite. That happened when I was 16, and I can remember becoming very ill and never recovering from it.
The truth is this, Lyme Disease does exist, it is a terrible disease, and there is NO cure. Please share and educate yourself about this disease. Let’s make May a great month to start an educational platform to get Lyme Disease information out there.
Not all information from the CDC is correct. There is much more research needed.