Tick borne diseases have been found in every state, every country, and every continent – except Antarctica. Ticks travel so it makes perfect sense that Lyme is not only in one place. Ticks also hitch rides on birds, small animals, etc. and can move geographically this way, as well.
Children are at the highest risk
Children suffer the most from Lyme and co-infections because they are typically more active outdoors and the symptoms can be mistaken for other illnesses. Children go years suffering the devastating consequences as the disease gets worse over time, so they miss out on their childhood before getting an accurate diagnosis. The hardest hit age group is age 5-14.
It’s commonly misdiagnosed
Many tick borne disease researchers and doctors are finding that their patients that have MS, ALS, early on-set Alzheimer’s, Lupus and many other auto immune and incurable diseases are positive for Lyme. Some recent research done with post-mortem ALS and Alzheimer’s sufferers revealed the borrelia (Lyme) bacteria was in their brains and other areas of the body. People around the world are discovering that what they thought was MS and ALS was actually Lyme and their symptoms are alleviated with long term antibiotics.
It feels like you’re dying
One person can have up to 50 painful symptoms that cycle on a weekly basis because of the systemic and cyclical nature of the bacterial disease. The bacteria is spiral shaped and screws in the joints and muscles causing joint pain, migraines, nerve damage, paralysis, eye problems, insomnia and many other symptoms that cause debilitating problems. When the bacteria reproduce and are “active” in the body, it causes flare ups of symptoms that can cause new symptoms or ones that come and go at different times causing a terribly long and frustrating journey to get an accurate diagnosis. Doctors often dismiss Lyme patients as hypochondriacs because of the many “dramatic” complaints of rotating symptoms that “come and go.”
You might not get that “bulls eye” rash
More than 40% of tick borne disease sufferers never had a rash and by the time they were diagnosed it was too late to treat their disease easily. Doctors usually won’t give antibiotics unless you have the rash, but you could still be infected if you were bitten by an infected tick.
Current testing is terribly flawed
This makes diagnosis almost impossible. The current tests most primary care doctors will give for Lyme disease only tests for one particular strain of Lyme and there are over a hundred strains, not to mention the many other tick borne diseases in which testing is not available. The current Lyme blood test only tests for antibodies, not the Lyme bacteria and Lyme supresses the immune system, causing the body to not create antibodies for Lyme. This is very problematic, because if you have Lyme you could test false negative even if you are positive.
Lyme and co-infections can be chronic
Those who seek treatment quickly for tick borne disease have a good chance of recovery but left untreated, it can be a life-long, grueling and costly chronic disease.
If caught late, tick borne diseases can be debilitating and even fatal
Many tick borne diseases can cause great damage to the brain, nervous system, neurological functions and the heart. Lyme carditis can cause heart arrhythmia, palpitations and heart attack.
Tick borne diseases can be sexually transmitted
Entire families suffer from Lyme disease and co-infections that have possibly been passed from husband to wife, (sexually transmitted) and from mother to child, (in utero). The bacteria is very similar in shape and type to the bacteria that causes syphilis, so this could be a reason that it is possible.
Awareness and education is the key to prevention
Do tick checks often – even if you have only been in your back yard. Ticks are everywhere – not just out in the woods. Use DEET and other insect repellent, but also dress for the activity. If you are camping, wear long socks tucked into pants so that ticks can’t crawl under your clothing. Check your pets after walking them so that they aren’t bringing ticks into the house. Talk about it. Let others know how dangerous ticks can be! Spread awareness!
My doctor looks at the stacks of paperwork in front of him. His silver glasses slide down his nose and he uses one finger to push them back into place. He has just finished my daughters lengthy Lyme appointment and now she is in the next room with my husband getting poked and prodded – another appointment, another round of tests, another day spent using our energy and resources to fight this battle. Dollar signs mount in my head as he gathers up her files and places them neatly to the side, grabbing mine from underneath. He pulls each page of my medical history out of the folder like he’s dissecting something living. He lays the specimen on the table in front of him and examines all of my insides in written form.
I have a feeling he’s had a long day even though it’s only 1pm. His answers have been short and to the point. He barely glances at me as he runs down my list of symptoms and asks stoically, “Since you were here last, how would you say you are doing?” He is looking for a percentage. We’ve been through this more times than I care to remember. My first visit almost 4 years ago was a big fat 20% and that was just because I was breathing and I had made the almost 2 hour drive, so I figured I couldn’t say zero.
I know this question is coming and yet, I can never seem to answer it. Every 6 month visit, I sit in this same stupid chair, mute and blank. I sit in silence for what feels like an eternity. Just me, a nurse with her back to me typing notes, and my LLMD. I stammer mindlessly, but I can’t answer the question. I have wondered why this particular question out of the many that are asked at my appointment is so difficult for me to answer and I think it comes down to this: my health cannot be quantified into a number. I don’t know how to do that. I understand that it’s just to give my doctor a rough idea of how I’m feeling, but this disease is so mysterious. It’s always changing. There is not a good answer. Case in point: if he had asked me that same question this week, I would have said 30%. I think I’m in the middle of a relapse…I’m not sure, but something is brewing and it has hit me hard. The day before I was fine. Today, worse. 70% 30% 40% Then what?
How do you quantify days of pain, of sickness and fatigue, even one day of life with this disease? I find it quite impossible because it never stays the same. Disease doesn’t have a solid foundation. Bacteria travels. Some days the meds help, some days they do not. Remission is temporary. Relapse happens. Pain is cyclical. I push myself and make things even worse. It’s an endless loop of chronic… everything.
So, how do I feel today? About 70% better than I was four years ago or perhaps, with a shift in perspective… 30% of the person I was before Lyme took over. It’s all in how you look at it. When I think about it, my current “70%” probably isn’t the same as it would have been before I had Lyme. My standard of living has changed with a chronic illness. It goes back to “how do you quantify disease?” I don’t have the answer.
It doesn’t really matter, because they are just numbers after all. My daughter and I are much more than a number and this disease is much more complicated than a percent sign. I hope one day I can sit in that office and not have any hesitation before I can say I feel 80% better than the last time I was here. Maybe I will even get to 90.
The problem is that it’s in that pause where the fear of the future lies dormant but restless. It’s the continual worry that treatment didn’t work or the memory of a day not long ago that was agony, or the thought of those tremors that haven’t gone away, or the constant panic that is in the background of everything wondering if tomorrow is the day it will all go right back downhill again. So the pause – that quiet hesitation – means I am running through all of these things in my head and as much as I want to be optimistic, I know the reality of this disease.
But, they are only numbers in the end and if numbers can help propel this disease out of my life, then I will do all that it takes. So, I lift my head up and I deduce the disease to a percentage point. “70%,” I say, as he continues to examine the ink blotted specimens.
When I first began navigating my diagnosis a few years ago, I joined some online Lyme support groups to get information, emotional support, and understanding. Within the first few weeks, I was painfully aware of how epidemic this disease was. There were literally thousands of people in these groups who had eerily similar stories to my own. We were all years in the making of no diagnosis, misdiagnosis, and waiting for a cure. We all had the same experience of many doctors who laughed in our faces, denied our pain, threw anti-depressants at us or didn’t help us at all. Some of us even lost family or good friends because they doubted the existence of a stealthy bacteria as the reason for all of our problems or just got weary of helping us.
I immediately formed a connection with these fellow “Lymies,” as some of them call themselves. One of the first to reach out to me and help me wade through the deep waters of the many layers of Lyme disease was a man named, Mike (or as he was known in most Lyme groups, Six Way Lymie.) He tirelessly fought to bring awareness to tick-borne diseases and to help others figure out how to go about testing, treatment, and pain remedies. He gave of his time and his strength, when he had it. He was a warrior for the group.
In the past few weeks, several of our own have lost their fight with Lyme Disease. One of them was Mike. We were not close and I didn’t know him personally, but at a time in my life when I was drowning in research, medical paperwork, and doctors orders, Mike threw out a life raft – he gave me simple and practical advice that I now pass on to others in the Lyme world. “Do what your body tells you to do.” I’m paraphrasing his words, but it was something very simple. That was it. It was a comment in a thread with many other comments, but I remember it because it was helpful and it smacked me in the face with some truth when I needed it the most.
I needed to know in that moment that it was ok to move on from a certain treatment, regardless of what others were telling me to do. I wasn’t listening to my body, even though everything in me was telling me to move on from oral antibiotics because they were not working and my body was fighting treatment. Someone’s comments rose above the others and I heard it clearly, go with my gut. Listen to my body. I did and I’m better for it now.
If IV is the right choice for you, do it – don’t let the fearful talk online scare you. It just may put you in remission. The natural route may be best approach, or a combo of antibiotics along with natural remedies might be what fights the infection best in your body. Everyone is different. Listen to the doctor you trust the most and those whose opinion you value who love you, but ultimately the choice comes down to you and your body. Do what’s best for YOU.
My doctor fully believes in the mind body connection and I am starting to realize just how powerful that connection really is. I don’t believe you can “will yourself to be well” or anything like that and neither does my doctor, but I believe that when you are trying to get better, you must be emotionally healthy and shut out the negativity in your life to heal the best you can physically. Science even backs it up. Stress and emotional pain causes heart attacks, cancer, and many other health problems. I needed a simple reminder to shut out the world, listen to my body, and do what is best for me. I will continue to pass on this wisdom to others in the Lyme community and throw a life raft to others that are navigating similar waters. Mike left a legacy in our Lyme community and he will be missed.
I thought it would be appropriate to end this post with a song my friend wrote a few years back when I was in the throes of this disease. He wrote it after I mentioned that I was having an off night with song writing because it was a “full moon” and I explained that many Lyme suffers can be negatively affected by the full moon. Because of the reproduction cycle of Borrelia, the spirochetes seem to be more active during the full moon phase and “come out” from burrowing in joints and muscles during this lunar cycle, which in turn makes the pain very intense. I have migraines, severe joint pain, and flares in inflammation during the week of the full moon. You can read more about it here: Full Moons and Lyme Disease
At the time that I told Josh about this I wasn’t even aware he was even paying much attention. I get very used to people tuning me out when I’m talking about Lyme. (Not that he would, just that I have gotten accustomed to it!) Sad but true. No one wants to talk about disease, pain, or the daily problems of a chronic illness. I had no idea that, not only was he listening, but he was empathizing. He went home and wrote this beautiful song that sums up so much of what Lyme disease is for me and the Lyme community. I am humbled and thankful for the friends I have that truly listen and care about me and my family.
I dedicate this song to those who have lost their fight with Lyme Disease this month. Mike, JoAnn, Annie, Lucy, and Julia – I am so sorry for your pain. You fought hard and you fought well. Thank you for spreading awareness and giving hope to our community, even when you were struggling to feel hope yourself. I hope you can rest now. No more pain. No more frustration. No more struggle. We are praying for your families and friends. You are not forgotten and we will curse the moon for you…
This recording starts when Josh is in the middle of setting up the song. He gave a shout out to Lyme Disease Awareness month and even explained the disease to the audience, but I missed recording it. I came out to support my friend in his musical endeavors and was not expecting to hear this song, so I apologize in advance for my lack of videography skills. I was crying and trying to hold my phone still at the same time. The lyrics just get to me…
I’m holed-up on a hill top until the sun fades away ‘Cause my work begins at the end of the day While most lay their heads down with schedules to keep I’m practicing words I was raised not to speak Silent I kneel, set my gaze toward the sky And wait for the clouds to divide
Then under the shining night While others watch and woo I look to the porous light and I curse the moon for you
There’s more to this world than our eyes take in Chaos held back by a veil, wearing thin But New London county has a story to tell Where some rogue tore it open and caught a ride out of hell And now, as a passenger, fights for the reins Contempt for the charge of your veins
O, poets will praise it’s face Love songs often do
But I’ll stand firm and make my case and I’ll curse the moon for you
O, bless the hands and the seeds that they sow But I’ve designed a course of my own
Whate’er names in orbit pass Harvest, Blood or Blue None hence shall escape my wrath I curse the moon for you
Joshua Vorvick 2014
For all of you in the Lyme community that are suffering, please don’t suffer alone. Reach out. Take heart and have courage. We are all here for you. Please try again tomorrow…
It’s funny how things in life come full circle. When I was diagnosed with Lyme and co-infections in 2012, after (grueling and agonizing) years of searching for answers to a notebook filled with health problems, it was after Ryan had left his management IT job of ten years to go full time into the ministry. We downsized from our 5 bedroom, 4 bath, 3,600 sq ft home to a 2 bedroom, 2 bathroom, 1,191 sq ft apartment for a few years. So, obviously we purged, sold a ton of stuff, and stored the rest. I did most of the selling and packing myself, which took it’s toll.
By the time we moved, my body was shutting down on me completely. The next few years is a blur to me now. I was in constant pain, severely fatigued, and was intermittently bedridden. I remember being so thankful that I had such a small space to clean and no more stairs to climb in pain anymore!
My youngest daughter was not yet in school during my worst years with Lyme, so she saw what no one else did – the raw moments of debilitation that this disease causes. I believe this is why she has always been my biggest advocate. Starting at age four, she watched me struggle with my health on a daily basis and helped as best she could. I have moments tucked away that are precious to me of her wiping away my tears, praying over me, and bringing me ice packs and stuffed animals for comfort. It wasn’t always bad, but some days were very hard and she was a trooper through those dark days.
When she started Kindergarten, she educated her class about ticks and talked about Lyme disease. She advocated for me throughout my entire journey. Everywhere we went, she would speak up about my disease, telling others to do regular tick checks. She even drew detailed pictures to further illustrate her points. It was convicting to see a child live with compassion and want to make a difference for others. She saw first hand what this disease was doing to her mommy and she wanted to make sure that it didn’t hurt anyone else.
Little did we know that just a couple of years later, she too would be suffering from this awful disease.
When Cammie began having Lyme like symptoms, I think I was in denial. I didn’t want to believe it was possible that I could have passed this to my children in utero. I knew how bad the burning pain was and I wouldn’t wish this kind of aching fatigue on my worst enemy. After she tested positive, I was devastated. I am thankful she is getting treatment, but everyday I still mourn the fact that I was not educated about Tick Borne diseases earlier in my life. It could have made all the difference in the world if someone had been a change maker for me and told me about Lyme.
Last year I met Megan, an amazing woman in the St. Louis Lyme Disease group who is a 4th grade teacher, also living with Lyme and co-infections. She is an awesome advocate and spreads Lyme education and awareness every chance she gets. One of her students, Emily came to her early one morning in February before class and told her she had been collecting donations from family and friends for over 6 weeks. Emily had taken it upon herself to gather donations to help those suffering with Lyme. Megan told me she wanted to see Emily’s donations go to another child suffering from Lyme Disease. I cried for over an hour. Camdyn’s doctors appointments are not covered by insurance and every visit is hard for us financially. The money Emily gave covered a visit and one of her prescriptions. Humbled. Amazed. Thankful. I don’t think there are many words to describe that kind of generosity, but those were my first. When I told Cammie what another little girl did for her, she immediately went to her desk and wrote Emily a thank you letter. I am hoping she can give it to Emily in person soon.
Emily’s loving act for my daughter further fuels my desire to continue spreading Lyme awareness and understanding. With understanding comes compassion, and with compassion comes hope. When presented with the facts of this disease, Emily was moved to compassion to help those suffering. Oh, what we can learn from a child.
I want to thank Emily and Megan for their generosity, big hearts, and for showing my 8 year-old what it looks like when love comes full circle. What a beautiful thing for my daughter to witness. She saw this scripture in action, “Do unto others as you would have them do unto you.”
Cammie was my change maker and helped me when I was at my worst.
Emily was Cammie’s change maker and helped her when she needed her the most.
Whose change maker are you going to be today? Who can you offer hope to? Be a giver of hope!
In 2013 I began treatment for Borreliosis (Lyme), Babesiosis, and Bartonella. After years of health problems and misdiagnosis, I had already been cataloging and recording my prescriptions and medicine. But I began to keep my empty bottles after I was finally accurately diagnosed with what is commonly referred to as, Late Stage Lyme Disease or Chronic Lyme.
I thought it would be a good visual of how far I had come, if I had a pile of pill bottles to show for it – a warped prize I guess you could say. I was hoping I could “mark the moment” and give hope to the Lyme community. I wanted a picture of what I had to go through just to get my health back. Pictures tell a story that we simply can’t articulate with words. My only thought back then was that a couple of boxes of bottles would bring some awareness to this awful disease and maybe it would make someone do a tick check or keep a friend from going through a lengthy battle of their own.
As many of my readers know, by 2014, as my neurological symptoms got progressively worse, I had to get a PICC line, then a port… and yet another port. I did IV medication for over 9 months. My husband and I decided to continue keeping the empty medicine bags, vials, and containers as much as we could. We didn’t keep everything obviously, simply because we lacked the space, but we kept the most important. This week my husband helped me sort and count.
(Also pictured: heparin, saline and other misc push syringes.)
They say a picture is worth a thousand words…
These pictures don’t include my vitamins, supplements, and natural remedies or all of the things we didn’t keep which would have probably filled our entire living room and kitchen. I think these pictures get the message across. Lyme and co-infections are serious, but they are not being taken seriously until it’s too late. When I went to my doctor in 2007 with a mile long list of strange MS-like symptoms, I wasn’t taken seriously. But even if I had been, there isn’t an accurate way to test someone who has been bitten years before and is still suffering symptoms of an aggressive bacterial infection. I didn’t get a CDC positive result until 2014. My immune system was shut down by the infection. I would not have shown positive on a Lyme test that is made for people who have just been bitten and that tests for their immune response to a recent bite. Why is there not better testing? Why is there not a cure? Why are people still suffering and having to spend thousands out-of-pocket for treatment?
Tick borne diseases are at epidemic numbers. The CDC reports that the number of Lyme cases is 300,000 and climbing. I believe this number is actually much higher because of the thousands that are misdiagnosed like I was for years. It is only a matter of time before you or someone you love is affected by this disease. Don’t shrug off that tick bite you had last summer and now that bone aching fatigue and joint pain that won’t go away. Don’t let your doctor tell you it’s all in your head. If you know something is wrong, you just know – fight for your own health, no one else will. Take a few extra seconds and do a tick check on you and your kids when you come inside. Do tick checks on your pets. Educate. Be an advocate. Spread Awareness. It is that important.
Lyme is a thief. It takes what it wants. It steals, pillages and wrecks lives. I have stood and watched helplessly as it has slowly eaten away at everything I love.
Lyme is: A destroyer. A monster. A bully. It is, quite literally – a parasite. It is, and always has been, a thief – of health, life, time, joy, childhood, experiences, jobs, love, talents, memories, happiness, friends, faith, family, homes…the list is endless.
The thief comes in and breaks down all that is good. He invades your space and makes you someone you are not. He makes himself comfy in your healthy body and quickly begins turning it into a toxic, bacterial wasteland that creeps inside organs, joints and even the brain, turning everything inside out and upside down.
Pain, confusion, fatigue, insomnia, memory loss, anxiety, panic attacks, rage episodes, tremors, paralysis, nerve damage, brain damage, speech problems, arthritis, tinnitus, migraines, eye pain, facial tics, breathing problems, heart murmurs, palpitations, muscle twitching, and muscle weakness are among the list of the many symptoms that Lyme patients endure. This is only a fraction of the symptoms. On average most patients have at least 20+ symptoms and they are usually going on at the same time or they migrate on an ongoing basis.
It is simply not living.
In the end, Lyme does what it pleases, regardless of how hard we fight back. And all this…even to a child.
My daughter is only 8 years old. Eight. This thief has stolen her ability for dance and cartwheels and playing pretend. But not her love for it…she just can’t do what she loves most of the time. She had to quit dance this year, her favorite thing to do. She just couldn’t keep up anymore. That is the purest form of torture and the worst part of this disease. It takes away your abilities and leaves you wanting to live. You still love what you love, you just can’t do it anymore. She is very smart and has never had problems in school, but she is struggling with foggy thinking and falling asleep in class. It has stolen much of her fun-loving personality and replaced it with moments of an anxious, angry, and scared little girl that I don’t recognize. It has changed her from a vivacious, energetic, happy child to a weakened, fatigued one who is consistently in pain, with chronic infections, swollen lymph nodes, fevers, stomach aches and an excessive need to sleep but once she falls asleep she wakes up throughout the night. She is always complaining of being tired.
I know the burden she carries all too well. There is an understanding, a silent mutual agreement. We do not need words. She knows that I know this path better than anyone else. When she is sick, I see the pain in her eyes. She doesn’t need to explain. Her body requires rest. I have been there and I feel her pain. She simply can’t keep going. She can’t explain why, but her body just won’t move or do the things she is asking of it. I get it, completely.
Last month, I noticed a small twitch on her face. Her eyes would squeeze tight over and over again. Her face tensed up. At first, I thought it was the light, maybe she was squinting to see something. But then I saw it again. And the next day. I hoped it was a problem with her eyes, so I took her to get her eyes tested but everything seemed normal. I stumbled on an article about congenital Lyme and the patient was a child who had facial tics. It hit me that this was what she was experiencing. I was seeing it, but not seeing it. This new annoyance was yet another symptom of neurological Lyme that was rearing it’s ugly head in my child’s life and I missed it.
She can’t control it. She doesn’t even realize she’s doing it. After our doctor confirmed that it was a neurological symptom of Lyme, I explained to her what was going on in her body and why she was having this strange thing happen to her, but she seemed to already have known. I hate it for her. I know the neurological signs mean we have to be more aggressive with treatment. Lack of treatment could lead to severe symptoms down the road.
I hear crying and screaming and suddenly realize it is my own voice. I don’t recognize it tonight. This is not right. My baby should be doing cartwheels! I want her to feel better and not just for a few days a month, or a few days but all the time! I look over at her. She is so pale and there are huge, dark circles under her eyes. It is frightening to think what lies beneath that fragile layer of skin. She is breathtakingly beautiful, but the beauty is covered with a thin sheet of sickness that is palpable. I can see and feel it all over her. Her body is wrecked with this wretched disease. I imagine the bacteria multiplying faster than we can kill it. I wonder what kind of long term damage it may be doing. Every time she complains of muscle soreness and joint pain, I think of the lack of a cure for chronic tick-borne diseases and how research is just beginning for new treatment options. How long she will suffer? How many more dreaded days and sleepless nights will she lie in pain with me holding her tiny body close to mine? I wonder if the disease will get worse as she gets older? Is anything we are doing going to help? Are we making the right decisions for treatment? There are too many questions and not nearly enough answers.
What I know is that my daughter is chronically ill. It is hard on her and it is hard on our entire family. We are exhausted. Every day is a battle. Emotionally and physically. She can’t sleep, hates taking baths and brushing her teeth because everything is an assault on her senses. She fights us at every turn but she doesn’t even realize it.
She needs to be better. I want her doing cartwheels and hand stands in Target again. I want to see her eyes light up the way they used to. I want to watch her dance her heart out without falling, hurting or getting fatigued. I want her to sleep through the night and hold my hand for fun things, not from being scared or because she relates to my pain.
I want to see her doing what she loves to do, unlimited and free, with a body that works the way a healthy child’s body is supposed to work.
Daily, I trudge through stigma’s and backward glances in waiting rooms. I correct wrong information at every step, flip through millions of medical journals, articles and files, fill out all the paperwork (and more paperwork.) I have researched every tick-borne related case I can get my hands on. I read and read… and read some more. We find answers for me, which means more answers for her. Waiting rooms become our second home. Co-pays and mounting medical bills are the norm these days. Every extra dollar goes to pay for the specialists, infectious disease doctors, internists and specialists for the specialists. We find answers to our questions but some answers only lead to more questions. There are protocols and treatment plans, natural remedies, homeopathic treatments, medicine, and more medicine. Finally, a doctor who cares and who is helping both of us. I pray that my daughter is on the road to recovery but every day we learn more and keep fighting.
All I know for sure is that Lyme is a thief. Lyme is a bastard. Lyme steals life. It has stolen far too much from my life, and I will not let it steal my daughters joy, too.
I know God works all things together for good. I know He does. I know miracles happen every day. I know He can heal. I trust He can and I believe He could heal us both completely. I know all these good things, believe me… I’ve prayed them or cried them in the dark when I didn’t know if I would make it through the night. But miracles don’t always happen and things don’t work out how we think they should. Our minds are finite, our ways are not Gods ways.
So, when my 8 year-old looks at me with tears in her eyes and asks why God doesn’t heal her – when she knows that He can, because she’s heard that He is her healer, my breath catches in my throat and I give the only answer I know. God loves her and He will never leave her or forsake her. But I don’t know why He doesn’t heal her. I don’t know why kids die of cancer or why people are bullies or entire families die in car accidents. The way I reconcile my faith with tragedy, disease and hurt is to know that God is in control and this world does not get the final word, He does. It sounds cliché, I know. It’s hard to trust, but it’s all I have to hold on to when she’s crying in pain or having a Lyme/PANDAS episode. This world – and these diseases – do NOT get the final word – My God does.
Sometimes, all I can do is cry, hold her, and tell her that I hate this disease as much as she does, I really do. And so does Jesus. He hates it and He is here for her in the middle of it. Our Lord comforts us in our time of need and that is what we can cling to when nothing else makes sense. He will never leave us.
What I know right now is that Lyme is a thief and I will not be his victim anymore. I don’t want sickness in my life or in my daughter’s life. It’s taken enough from us, it has stolen too many days…no, it has stolen years.
Oh, God, please give us back the years the locusts have eaten. I am on my knees begging The Giver of all good things to give life back to my little girl and rid her body of disease. Give life where there is death. Kill this thief in his tracks.
I often think in terms of loss with this disease. I feel robbed of what was supposed to be the best years of my life. Stolen days, remnants of a social life, distant dreams, and goals that have taken a backseat to my health. My purpose, passions, ambitions – all vanished. I will never get the time back that Lyme disease has ripped from my life and it haunts me daily how much time was “wasted.”
But the Lord continually reminds me that while there may be some loss, so much has been gained through this journey. Not only did I discover a strength of will and courage inside myself that I didn’t know existed, but I found a brave girl buried beneath the one who tended to live in fear of the world and everything in it. I am no longer living in fear. I am brave. I have become courageous.
Brave. Courageous. Strong. I never would have used those words to describe myself a few years ago. Now I hear many loved ones in my life who encourage me and tell me that I am all of those things. I think I am slowly starting to believe it. Maybe. But it has only been because of HIS strength that I am here at all. Jesus is my courage.
Throughout this journey, I have learned to lean into my Father as I have never had to do before. Debilitating health brings you to your knees like nothing else will. I have cried, shouted, and yelled at God many times over the last few years of pain, frustration, and agony. I have repeated scriptures to myself in the wee hours of the morning and He came in close and stayed with me in the pain. I have heard Jesus along the way, reminding me that He is with me. He isn’t going anywhere and that is more than even family can promise when things get too hard. He understands the loneliness. He gets the ache. It’s more than I can bear, but not more than He can bear. So, I hoist this burden of sickness off my back and he takes it – freely, lovingly, without hesitation. He knows. He sees. He is there. I have prayed loud, bold prayers for healing and have whispered quiet, two-word prayers in the dark – begging Him to take just a little bit of the pain from my body so I could sleep. And He has. He will never leave me or forsake me. He is here in the mess with me and promises to give me a way to endure.
“No trial has overtaken you that is not faced by others. And God is faithful: He will not let you be tried beyond what you are able to bear, but with the trial will also provide a way out so that you may be able to endure it.” 1 Corinthians 10:13 (GNT)
God has brought people into my life that I would have never met if not for Lyme disease. Many nurses, fellow patients and sufferers, loving and concerned doctors who truly fought for me and wanted me well and so many beautiful people who pray for me daily. Letters, emails, calls and messages from strangers have shown me that my battle has not been in vain. Many have a correct diagnosis, are getting treatment, or have prevented themselves or their loved ones from getting Lyme disease because of my story.
A nurse came with me to Bible study when I was beginning my natural treatment journey years ago. We knelt in front of a cross, hand in hand and I had the honor of praying with her as she dedicated her life to Jesus and asked for His peace in her life. Our paths would not have crossed if I had been well.
God has a purpose that is far above my own. Where I may only see an obstacle that needs to be removed, He sees through the struggle and makes beauty out of the ashes of this diseased life. I’m beginning to realize that even in the pain and trials, the struggles and heartache – God creates a plan, a way, a hope. He moves – in spite of me, and in spite of Lyme disease.
I guess it also goes without saying that living with a disease for so many years has given me a profound love and empathy for sufferers of chronic illness. My heart is moved and opened to the sick and hurting in a way that only personal experience can bring. I am drawn to help others who are sick or suffering in any way I can and I’m excited to see how God will use this season to help the hurting.
Through it all, I am reminded every day that I am not alone. God has brought immeasurable good through this journey. I can’t look at my disease through the lens of loss anymore. I now see beloved faces, hear familiar voices, and have many “total God thing” stories to tell about the faithfulness and love of God.
I can honestly say that, even though it may have taken years – I now see my disease through the lens of love.
For the past few years while suffering the pain, fatigue and never ending symptoms of the plague that is tick borne disease, I have kept a little journal on my phone of things my girls have said to me.
I read through them tonight and had a bit of break down. Out of no where, the reality of it all – what has become my normal – smacked me right in the face. How is this my life? How did I get here?
After much internal debate (for many various reasons for and against) I have finally decided to post some of them here. I think the honest and beautiful sentiments of a child capture the reality of how life has been for us for the past few years and highlight the true nature of this insidious disease.
For those who still can’t quite understand invisible illnesses, and maybe don’t believe that Lyme is debilitating, I think this will explain it simply through the eyes of a child.
This is raw and real and painful for me to even type. And yet, it came from the mouths of my two young girls who just want their mama to be well. Imagine hearing your own children say things like this to you on a regular basis. They should never have to think these things and a mother shouldn’t ever hear this kind of worry and sadness in her children’s voices.
“I’m so glad to see you’re eating today mommy.” Cammie (7 yrs)
I was crying in pain one morning and Chloe began to pat and rub my back –
“It’s ok, Mommy. Everything will be alright. I promise.”
“Where are you hurting? I want to fix it for you.”
“I’m happy you aren’t sleeping right now so that we can watch Scooby together. Yesterday, you slept through the good parts.” Cammie (age 6)
“I wish I could take it away, mommy.” Chloe (9 yrs)
“Am I going to have to get a needle in my chest someday, too?” Cammie, after her blood test revealed that she also has Lyme disease.
During my mostly bedridden years, I apologized one night to the girls because we weren’t able to do the fun outing I had planned. I told them I was sorry that I wasn’t the fun, energetic mommy they used to have. Cammie answered, “It’s ok. I know it’s not you, it’s the Lyme. I just love lying next to you when you’re sleeping.”
After a long hug, Chloe told me that I smelled like a hospital and she was sorry the medicine made me so smelly.
“I know. You’re just too tired to play with me. You’re always too tired.”
Chloe to Cammie one morning when they thought I was sleeping, “Don’t be loud, Cammie. Mommy needs her rest. Her body is fighting hard to get better. She needs a lot of sleep to do that.”
“You don’t have to pick up my shoes mommy, I know that makes you out of breath sometimes.”
Written in school, an acrostic poem for me for Mother’s Day –
“M” : “Mornings are hard for her”
I walked 2 miles on Tuesday last week. TWO whole miles. For my amazing running friends who run 40 miles a day, do 500,000 mile marathons, triathlons, and run-15-hours-through-mud-athons every weekend, I know this sounds like the warm-up before your warm-up. But for me… it has been years since I could do it. Years. In the past, I have pushed myself to walk around the block, I try to do yoga or light exercise since being debilitated by this disease, but after a long active day, it usually does not happen. To feel that extra energy “urge” and be able to walk that long was HUGE. It was 2 miles without joint pain or muscle fatigue. I felt like doing it and I was able to keep doing it.
And that’s just for starters! I was able to get out of bed early the next day, get ready, and go full steam like my old self of 4 years ago. Oh, how I’ve missed that self! I didn’t have the energy to wash my hair (this is why I love long hair, top knot it is!) and I almost had to crawl to the shower. BUT, I got ready and spent the day at the zoo with the girls. It hurt later and my body was angry with me for the rest of the week, but I enjoyed the day and was not totally distracted by pain and fatigue.
This week has been a little different. After a few busy weeks in a row, my body has shut down on me a bit. I have had kidney pain and exhaustion, but I have been able to keep up with life, for the most part minus some “sleep half the day away” days. Thankfully, it’s summer and the girls have been ok with lazy days and staying in our jammies.
I have also had a crazy “Lyme awareness” summer. I have written articles, had two different newspaper write ups about my journey (thanks to a sweet friend who writes for a newspaper) and was interviewed by KMOX for a quick story about the personal aspects of this disease. I was also asked to record a podcast for a friend who has a women’s ministry. Her new series is called “A Call to Courage.” Monday I will be going to a recording studio to talk about my struggle and how God has been my comfort and my peace throughout this never-ending battle. (Prayers appreciated for this!)
But, to be honest with you I have to admit that I get really tired of talking about this disease. I get weary of how Lyme seems to take over my life. I even get bored with the words used to describe this disease. Chronic. Late Stage. Severe. Neurological. Remission. It gets very old, very worn, and very depressing. There are times when I retreat to my room, turn off my phone, put on some Brandi Carlile (not Belinda), pull the curtains tight and push my head as far under the covers as I can.
Some days, I don’t want this to be my story. I didn’t ask for this. I don’t have to talk about it… right?
Yesterday, I was minding my own business, worrying about next week. I was feeling apprehensive about having my voice recorded – sounding vulnerable and small, as I’m sure it will. I was praying about it, but fearing it a little bit, too. Then I opened up my little white mailbox and pulled out junk mail along with some bills, and a simple white envelope with unfamiliar handwriting, addressed to me.
I wasn’t ready for what was written inside of the little blue lighthouse card. Words written to me, words that reduced me to a humble puddle of tears while I stood barefoot on my porch. I was taken back by the magnitude and simplicity of a beautiful, personal hand-written letter. A woman thanked me for sharing my experience with Lyme in the May issue of the West magazine. Her daughter has been sick for over two years and they have gone to many doctors trying to find the cause of her health problems, to no avail. After reading my story, they asked their doctor to test for Lyme and although he was apprehensive, he tested her anyway and she was positive for Lyme disease. Her words just knocked me over, “I know the Lord meant for me to read your article and I appreciate so much that you shared your story. Ellen now has HOPE because of you, DeAnne.”
Typing that sentence out just made me a mess of tears all over again. I called Annette today and we chatted for a while. It was good for my soul. I gave her the name of my Lyme doctor and we talked about God’s provision and his goodness. I was thankful for her card and she was grateful for my story. We agreed that this was all meant to be. Blessed.
Ellen has HOPE because of how God moved through my story. He is the one who should receive the glory. I’m just thankful my God still uses the broken, the messed up, and those of us who are still in process to help others and bring Him praise. I’m humbled. (And I might still be crying…)
A friend posted the days excerpt from “My Utmost For His Highest” and I was again reminded that God uses our stories here and now… not later or when the “miracle” or success comes. He uses what we may think is the “just getting through it” part of our lives more than any success or victory. His purpose is in the process. Oh, how I needed to read this! He can walk on the storms of my life right now…
“We tend to think that if Jesus Christ compels us to do something and we are obedient to Him, He will lead us to great success. We should never have the thought that our dreams of success are God’s purpose for us. In fact, His purpose may be exactly the opposite. We have the idea that God is leading us toward a particular end or a desired goal, but He is not. The question of whether or not we arrive at a particular goal is of little importance, and reaching it becomes merely an episode along the way. What we see as only the process of reaching a particular end, God sees as the goal itself. What is my vision of God’s purpose for me? Whatever it may be, His purpose is for me to depend on Him and on His power now. If I can stay calm, faithful, and unconfused while in the middle of the turmoil of life, the goal of the purpose of God is being accomplished in me. God is not working toward a particular finish— His purpose is the process itself. What He desires for me is that I see “Him walking on the sea” with no shore, no success, nor goal in sight, but simply having the absolute certainty that everything is all right because I see “Him walking on the sea” (Mark 6:49). It is the process, not the outcome, that is glorifying to God.
God’s training is for now, not later. His purpose is for this very minute, not for sometime in the future. We have nothing to do with what will follow our obedience, and we are wrong to concern ourselves with it. What people call preparation, God sees as the goal itself. God’s purpose is to enable me to see that He can walk on the storms of my life right now. If we have a further goal in mind, we are not paying enough attention to the present time. However, if we realize that moment-by-moment obedience is the goal, then each moment as it comes is precious.” -Oswald Chambers
These words and the words on the little blue card quieted my doubts and confirmed my suspicions… I simply can’t stop telling my story. I must continue to be vulnerable and honest, even when it’s uncomfortable, even when it’s inconvenient and even when my emotions get in the way. I can’t stop spreading awareness and education about Lyme disease. It’s important, it matters and it’s making a difference. Annette and Ellen are proof that our stories matter and we must continue to tell them even when it hurts. If my story can help one person, it’s worth the hours, the research, the writing, the interviews, and my energy. It’s worth every single minute.
Give hope. Give life. Share your story. It just may be what someone needs to hear today.
I haven’t written a blog post in over a month. I haven’t picked up my guitar since January. I haven’t done a whole heckuva lot that doesn’t involve keeping my head above water in the past three years, but this last month was worse, way worse. It’s completely deflating to experience progress when it comes to your health and then have one setback after another… bad reactions to meds, denied insurance coverage, pulled out PICC lines, abnormal blood tests, and a broken port make me feel like I’ve taken 50 steps back after I had finally gone forward a few steps.
There is a fear that creeps through my mind lately every time I open one of the four dresser drawers that I converted to my IV supply storage. The fear is that this disease is becomingmy normal. I’m getting used to this hardly living, battling to have a better quality life, revolving my days around IV poles and dosing schedules – way of life. It’s just another day to me now. I go to the store and don’t even notice that my line has fallen out of its hiding place in my bra and there’s blood on my shirt from my needle change earlier that day. Days when my Chloe climbs in my lap and announces that I always smell like a hospital. I can ignore the buzzing in my ears, my palpitating murmuring heart, and the radiating nerve pulses that come and go. My family graciously overlooks my memory lapses and pauses in conversation because I forget what I’m talking about and my brain just gives up. I’ve learned to stop making plans, because I can’t trust my body from one day to the next. I have a ridiculously high pain tolerance that keeps getting higher. I can ignore pain that would knock most people down for days. Each new bruise and scar is a constant reminder that I fight this disease every day and that giving up is not an option.
I have learned how to adapt to a life of chronic pain and fatigue. I hardly flinched when anesthesia tried four times to find a vein for my port replacement surgery. I’m used to needles, blood, and everything that comes with it. No one should ever get used to that. The anesthesia doctors always say the same thing after ignoring me when I warn them that I’m a hard stick, and my veins probably won’t cooperate. But they are still so surprised when my veins blow and blood flies in every direction.“Wow, you really do have bad veins.” My inner smart ass always wants to say, “No? Really? Thanks for informing me. It’s why I have a freaking port, it’s why a PICC line didn’t work for me, it’s why I’m in the hospital for the fifth time in less than six months.” Seriously, though.
There is a haunting idea floating around the chronic illness crowd that we must separate ourselves from the disease or disability before it becomes who we are. Some people get really angry in the online Lyme community about this notion, and I know the frustration. Some call themselves “Lymies,” while others are appalled that we would want to identify with our disease in such a “cutesy” way. Some sufferers have come to terms with the fact that this is their reality right now and remission or not, Lyme will always be a part of their story. Some bring awareness to the disease by taking a picture and posting it with the caption, “I am Lyme Disease” or “This is the Face of Lyme Disease.” Personally, I went into this with the flippant and naive notion that I could control it. I believed that I would not be defined by Lyme. I even wrote that “I have Lyme, but it doesn’t have me.” I think that in some ways, I was very wrong.
Because, eventually it does have you, so to speak. Inadvertently, Lyme does become you – maybe not permanently, but when you go through something day after day and year after year, with no real end in sight, it has a tendency to get on you. It leaves its mark. It leaves its mark on your relationships, your spouse, your faith, your friends, your passions, your kids, even your pets. It can’t help but become a part of you. And maybe we have been looking at this all wrong.
Maybe we have to become it, to overcome it.
It’s kind of like when the good guys learn everything they can about their enemy so there will be no surprises later. They do these long-term covert operations to hang out with them, spy on them, and live with them so that they will know the absolute best way to defeat them. I’m suddenly realizing that this is where I am these days. I’m hiding out with the enemy, sleeping in his bed, wearing his clothes, learning his language, and reading his books so that I will have everything I need to put him to rest someday. I hope the next couple months of treatment will be my final covert mission. I would love to put Lyme to rest, once and for all so this struggle can just be a few chapters in my story, not the whole book. As Maya Angelou puts it so eloquently,
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”