Living Beyond Lyme...
Be honest, Be real, Be you...I say this and have been using it in my music and writing for years. But stripping down to that level of honesty is a challenge in the real world. It requires being willing to put your entire heart out for the world to break and break again. For everyone to see you for all that you are, faults, fears, and mistakes and to let them watch you fall and get back up for the thousandth time. It takes you out of the safe world behind your computer keyboard or phone screen and instead transports you directly into the world of people. Real life, real hurt, real crazy, messy people. That is why I wrote Living beyond Lyme, it is longer than my normal blog entries and required more space, and time to read, but it's an honest look into what the last decade and then some of my life has looked like. Why I disappeared from music and honestly from life for so long? It's brutal honesty and scary vulnerability for me. But I hope it makes a difference in someone's life. I hope it helps someone choose to live and fight and change. For those who read it, thank you!
Honesty, transparency, vulnerability – these are all hard words. Not because they are actually hard to do, but because they have taught us they are. I spent most of my life trying to live up to a standard of perfection so high no one could have achieved it. I didn’t demand or expect that of others, but I refused to allow anything less of myself. I compared myself to everyone. And as with all comparisons, there was a fatal flaw in my approach to self-expectation… I’m not perfect, nor will I ever be. The only thing this constant high bar did to me was it knocked me down, over and over and over again. It reminded me every moment of every day that I was never ever going to be good enough, talented enough, pretty enough, or perfect enough.
I’ve been singing for as long as I have memories, and it’s what most people know me for. Although singing was not my first love, writing is… Music has always been my go-to, safe place, the one thing I felt I was good at. So what happens when someone who is demanding perfection of themselves, has the one thing they feel they have control of in their life taken away? They face a life-altering choice… let it destroy them or rise out of it and become something more… I choose every day to stand up and fight my way through the struggle and walk into my destiny, to become something more. Something beyond insecurity, to make a difference. I've always been a tender-hearted person, a true empath. I cannot stand to see people in any kind of pain. So using my own pain to help others has actually helped me heal more than anything else I've ever done.
I’ve been blazing an unending battle with chronic illness and Lyme disease. It had wrecked my immune system, and I thought my entire life. So many times I thought I would die, and so many times I wanted to. Everything became a struggle, walking, eating, trying to crawl to the bathroom because I was too weak and in too much pain to get there any other way. Honestly, just living felt like it was too hard most days. My dad had to work, so I spent 8 to 10 hours a day alone in that struggle, then he would come home and have to listen to me cry myself to sleep from the next room every night.
My dad had to listen to me ask God to please just let me die, while he prayed desperately for God to keep me going. I was in constant pain, exposure to anything or anyone made me deathly sick and I was battling a depression I can’t even explain. One of the hardest things in this was dealing with my Grandpa dying and I was too sick to get there. I was instead in a bed crying my eyes out because no matter how much I wanted to, I could not get up. And I am trying to write through tears right now because I can remember every detail, every fear, and every ounce of pain.
I have endured years of hospital stays, ER and Urgent care visits, and ambulance rides. I battled and still struggle with severe asthma. I had to have constant blood tests, cultures, treatments, injections, IVs, and antibiotic therapies, sixteen to twenty-six different medications daily, and two years mostly in a bed. So I ended up with mountains of medical bills and none of the treatments were working. I was getting worse, not better. I found out quickly who my genuine friends and family were because when you are dealing with something people don’t understand, they are quick to hit the exit door and disappear. But I’m not worse for their leaving.
There came a point where I had no choices left but to just live, fight and pull myself up or die. So with tears literally burning my face one day, I crawled to my piano, pulled myself up on that bench, and played. It didn’t sound good because Lyme also attacked my memory, song lyrics, names, and how to use my left hand on the piano were all gone (for someone who played by ear since she was five, this was heartbreaking for me). All I could play was simply picked out melodies and sing along. Singing and writing helped pull me through. I don’t think I would have survived without them.
It took some time, but I pulled myself to that piano every day; I played every day, and I sang every day. I started writing songs again (I’m sure I will record that album someday). But I willed myself to live with a lot of help from God because I honestly didn’t have it in me to keep going. It wasn’t the life I had before by any means; I got sick easily; I felt intense anxiety at the thought of going anywhere or being around anyone because of the fear of ending up at the hospital again. But it was a life, and I found ways to enjoy it and be semi-productive in it.
I also have to mention that I am forever thankful that just before getting so desperately sick, I met my best friend who ended up being my husband and my lifeline. He kept me encouraged, built me up, ran lyrics with me, talked about comics, music, writing, recording, stupid movies, celebrity crushes (we didn’t know we had any feelings for each other yet haha) literally anything to keep me going he would do. He dropped everything time and time again if I called and needed him. And we were living across the US from one another. He lived in Oregon and I lived in Oklahoma. It was thousands of texts and hours of phone calls over two years, but our friendship became rock solid, we married four years after we first met, after dating only seven months.
He was and still is my angel. So many times he’s the only reason I could get up and try again, and so many times he still is. It is impossible to explain how hard it is to live with someone who is chronically ill. I imagine it’s almost as hard as being the one who is chronically ill. It is taxing and lonely and frustrating and depriving. It takes so much out of you to be the caregiver or the sick. He’s had to go to work every day not knowing how I will be while he’s gone or when he gets home. And he’s had to miss work entirely because I was too sick to move or take care of anything. It’s a hard road to walk and requires a ridiculous amount of love and grace, understanding, and friendship. But we’ve made it through every single hard hit.
I had been doing so much better in 2016 other than some scary asthma episodes, so I was hopeful this meant I was finally winning at this health thing. Then in 2017 out of nowhere, I had a massive relapse and a full immune system crash. My liver stopped functioning correctly, I went into severe dehydration and my body could no longer break down vitamins, nutrients, or most foods. I couldn’t eliminate toxins from my body, which caused me to stay sick all the time and fall back into dealing with chronic fatigue syndrome and kidney stones. I spent hours of every day vomiting, shaking, and dealing with severe joint pain, off-and-on fevers, and so on. It got so bad my doctor had to sign FMLA paperwork because my husband had to stay home some days to take care of me because I was too sick to lift my head off the toilet. It was a good three months of hell. But I kept reminding myself I had been through worse. I know it’s hard to imagine worse, but I promise I had been through much worse.
Around 4 am one night, I was dreaming I had relapsed so severely that I was bedfast and couldn’t walk again. My husband witnessed a full-on meltdown, I got off the bed and wasn’t able to stand or move so I became hysterical and in absolute despair. I was crying uncontrollably and couldn’t get my feet underneath me. I got sick, and he had to carry me to the bathroom all while he was trying to get me awake enough to get Albuterol in my system because I was having an asthma attack. I was saying repeatedly that “I can’t do this again”, “I can’t go through this again”, and “Please God, I can’t do this again.” Keep in mind that to me I was reliving everything I had been through as if it were just now happening but for the second time. I woke up finally; I’m not even sure how long it took. I woke myself up praying. It was the first time I think my husband realized just how traumatic that entire experience with Lyme disease had been for me. He was pretty shaken up when I finally came to and realized what had happened and calmed down and started breathing treatments. He was seconds away from calling an ambulance.
I finally made it back to the hospital and this time they put me on steroids and so many antibiotic treatments my immune system was not repairing so it meant isolation again. My hands kept hurting and going numb so writing was near impossible and then I lost my ability to sing and often to even speak. The steroids were constricting my vocal cords, and my one last outlet to grab onto was taken away. It is the most empty I have ever felt. I couldn’t do any of the things I loved, and I couldn’t be around anyone because of the risk of further relapses. I had nothing to hold on to except the one constant in my life which is my faith, my relationship with God. My relationship and my belief in God go back to my own personal experiences as a child of three, not my parents or any church experiences. I believe in a God of Love and because of that I love everyone and that is what I show and tell. All judgment is checked at the door. I am not a fan of judgment or religion but I love relationships and a true showing of love, which I feel most churches have missed entirely. So that is just letting you know where I stand because I'm constantly judged and questioned about it myself.
Looking back and I know it sounds insane to say… I don’t regret that struggle for a day. Because in losing my voice, in losing my outlets… the things I used to define who I was by, I ended up finding the real me. I decided after that horrible night it was time for a change and no one but me could make it happen.
So I started working with a Lyme specialist changing the foods I was eating, using herbs and herbal teas, natural detoxifiers, and just changing my outlook on life to full hope and positivity and slowly saw my health improve and I’m continuing to improve daily. It’s been a slow process, but there has been significant progress. That’s not to say there are not still days where I struggle, but it is getting better all the time. I feel like I’m getting my life back; I can do things in public sometimes like go to a movie even if it is an early AM one haha. I can go to a flea market or a café or for a walk. I can go get my own groceries (again very early in the morning) but it’s a start.
The biggest change was getting off of all but three medications and getting my voice back… I can sing again. It literally feels like being able to breathe for the first time after being required to hold your breath until it hurts. I’m still a little hesitant to make plans with people because I’ve had to cancel so many times, but even that is getting better. I’m starting to be able to travel again, which is huge! This physical struggle stripped me bare, it removed everything I defined myself by, everything everyone else defined me by, every standard I held myself to, and even removed the people in my closest circle. This struggle freed me, it re-birthed me; it’s ended up being the best thing that ever happened to me. Because it broke my fear of failure because it broke me! And it gave God a chance to put me back together minus all the wounded leaky cracks, and there were more of those than you could imagine. The anthem of my life is Colton Dixon’s song “Through all of it” if you haven’t heard it finish reading this then go listen to it!
I write now with passion! I sing now with passion! I love it now with passion! And I judge… with nothing, it’s not my job to judge others, and it’s not my job to judge me. I love and leave the rest with God. And I’ve gone further on the road to recovery and success than I ever dreamed possible. I’m not telling you this story for sympathy, I don’t need it. I’m telling you this story so you can see how much hope can be pulled from what appears to be nothing. Now, I just want people to know they are loved, that they matter and there is always hope, no matter how hopeless it looks. And I’m happy being me, faults, mistakes, and all.
Sometimes what looks like the end of the road is where your destiny is just starting to catch fire! So whatever you have been through, or whatever you are going through, remember that you are fierce! You are loved! And you can get through this! Life is worth living. Grab a hold and don’t let go. I’m living proof that the end doesn’t have to be a period. I’m living proof that the darkest night is just before you get the KO on your enemy and life begins to give you something back. I hope my story helps someone realize their destiny, and that it encourages someone to fight for their best life. Life can always be worse, but the worse can always get better.
In the words of Dolly Parton, “It’s not too late for me to be someone.” So get up, fight, and go change the world – one person, one story, one song, one friend, one breath at a time. Everything else – it will keep!
As is always the case with chronic illness things did not stay on track to getting better. This was written in 2019 and in 2019 I was able to experience so many amazing things that I am forever grateful for. Then in March of 2020 lockdown from a global pandemic, we are still dealing with. I wasn't able to get to appointments or get the herbal protocols I was using before the pandemic and it didn't take long for my body to respond badly. I have not been able to do a lot of things outside of my house since then. I've had Covid twice and have had to battle many immune system issues over the last three years. I lost my Grandmother who was my rock and a million other hard things have happened. But I don't quit, I have continued to write, create, and do what I can, where I am at with what I have. I always look for the light, the positive, the place to find gratitude. It for me has proven to be the best way to live. in the spring my mom was diagnosed with breast cancer and that has been a scary and challenging fight. I am doing better again (thank you God) and have a book coming out in the near future about all of this. I still have a lot of good days and I believe I have even more of those ahead of me as I believe you do as well.