How has Lyme Disease affected your life? What inspires you?
I’ve had many struggles in life but I overcame them all. I fought hard to make something of my life. I was finally where I wanted to be. A successful career in banking as an Asst. Vice President and a family who I adore and love with all my heart. I didn’t take much for granted knowing how hard life can be. I knew how blessed I truly was. But looking back now, I did take one thing for granted. My health. I watched my son battle cancer at age 9 and after that realized the gift of health for my children. But myself? I’ve always been very healthy, ate right, worked out, lots of energy. I kept our family and home running with the help of my husband of course. I never thought for second what happens if I get sick?
In September 2014 after my back went out like it often did, I started having issues with my legs. It went on for a month. Nerve pain, tingling sensation, left foot drop, zapping shock sensations, etc. Then joint and muscle pain began to set in. Seeing many doctors who had no clue. It grew worse until one day at work I got up to walk and my feet were stuck to the floor as if cemented down. I was rushed to the local hospital who then sent me to San Antonio to a larger hospital. After a week of testing, they had no idea what was wrong. I’ll never forget those next words. ” you may never walk again”. I was in a wheelchair off and on(mostly on) for 6 months. Doctor after doctor. The Mayo Clinic diagnosed me with functional gait disorder brought on my severe nerve pain. Again saying I may never walk again. I refused to accept that. I was determined to get my life back. I continued to work at my career and fought more than ever to get my legs back. I eventually got out of the wheelchair. However, I still had episodes when I’d lose my legs and be back in it for a few days or so. It started spreading to affect my arms as well. Nevertheless, I was managing it the best I could and not letting it ruin my life. “I’ve got this “, or so I thought.
Three years later. I woke up on the floor hearing cops pounding at my door getting ready to knock it in. I finally get to the door only to pass out again. My place was flooded with the police and ambulance workers. I had gone to lunch from work and never returned. That was the start of my heart becoming affected. I was passing out 3 or 4 times a day. Had to go on temporary disability. My heart issues began flaring what other symptoms I had. I’d wake up many times on the floor of my home, too weak to move. I’d lay there for hours until someone found me. I’ve passed out in the bathtub found nearly submerged under water and pulled out. I’ve fallen down stairs, passed out in the yard, had many bumps and bruises and have scared friends or family who found me unconscious. Yet my condition grew worse. I began waking up many times unable to move my legs or arms and unable to speak. I was trapped in my body with no way to communicate. Just tears of fear rolled down my cheeks. My body began shaking terribly(seizure like episodes), waking up during the night many times drenched in sweat, my heart racing so fast and a feeling I can’t describe in my body. I felt as if I were dying. I’d also wake up a lot because I quit breathing. Insomnia sets in, trouble breathing, severe nausea, flu like symptoms. The long list continues but far too much to list.
I ended up losing my career of 18 years due to becoming extremely ill. A career I worked so hard at. I knew I was dying. I could feel it. Doctors had no clue what was wrong. I finally came across a YouTube video of a singer with lyme. I knew immediately that’s what I had. So I traveled to another state where I was tested by a lyme literate doctor. Sure enough I tested positive with chronic lyme disease, co infections, molds, heavy metals and other things. I had a port put in and quickly began treatment. 5 days a week, 4 to 7 hours a day of ivs dripping into my body. Two months and over $50,000.00 out of pocket spent, I had to quit treatment. I only have one kidney and it was too hard on my body. My doctor said I fall into that small category where treatment wont work. He told me without treatment, I will die.
I’ve been in bed more days than not for about a year. Everyday is a fight. I push through the pain. The pain. Let’s talk about the pain. Have you ever stepped into an ice cold river or lake? You remember how bad it hurts your feet and you quickly jump out? That is exactly how my nerve pain feels. It started from my knees down. Then my entire legs, my arms and now my back. Only I can’t jump out. I’m trapped in this body that hurts so bad at times it shakes uncontrollably. All my joints hurts, my muscles hurt and my nerves hurt. It triggers severe anxiety because there is no escaping the pain. Nowhere to run, no way to make it stop. During those bouts of severe pain, I cry a lot. Begging God to make it stop. To please just take me and spare me anymore pain.
My lyme is now in my joints, spine, heart, brain and nervous system(that I know of). I have what they call neurological lyme disease. There are so many symptoms that plague your body with this disease. It attacks your brain leaving your memory deteriorating. I sometimes feel like a child because my brain doesn’t work like it should. You no longer feel anything about certain things(it just shuts down that part of your brain), you do and say things that are not you, emotions are everywhere and the lyme rage is scary in itself. So many of us don’t even know who we are anymore. You feel like you have literally been possessed by a demon . Your body is under attack, your brain is inflamed and under attack. You hate this person lyme has made you, yet, you have no control over it. You’re so sick, friends disappear due to having their own lives, doctors can’t help, some won’t help, insurance won’t cover treatment. We’re trapped in this body that is now a torture chamber. We’re dying a slow, painful and agonizing death and we’re dying alone with no help. Someone once said, imagine being told you have stage 4 cancer. Then being told we really can’t help you or there is some doctors who can try to help you but insurance won’t cover it. It will cost you thousands of dollars with no guarantee. That is what lyme patients outlook is like. Many families lose their homes because they are spending all their money to stay alive. Our lives are being held hostage by those who could change our helplessness(CDC). It would be as simple as recognizing lyme disease as the bonafide and destructive, even deadly disease that it is.
Many lyme sufferers commit suicide because there isn’t much hope for us right now. I’d be lying if I didn’t say on those days my pain is so horrific and I can’t escape it, my body is so sick and so tired that my mind hasn’t gone there. I fight everyday to stay alive. I fight every day to be as normal as I can for everyone else. Many days I fake it to the best I can. Some days I do great. Put on a little makeup, smile, snap a picture, try to participate in life. Some days I have nothing in me to try. I hurt too bad, too weak, just too sick. I push myself to attend things when I can. But not without a cost. It can knock me down and take me days to weeks to recover.
This disease stole my career, my friends, it took my husband’s wife and my children’s mother, its caused havoc on our finances and put a lot of stress on my family. Our home struggles to stay afloat. I went from a healthy, active and happy wife/mom, a successful career woman to a very sick woman that I don’t even recognize any longer. A woman who is using what strength I have just to stay alive.
Please help me and so many like me get help by bringing awareness to this horrific disease. Help us to not have to fight this alone. #lymeawareness
I walk by faith not by sight
2 Corinthians 5:7