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I have a moment, a feeling frozen in my mind. I doubt that it will ever go away. It doesn’t haunt me. It doesn’t affect my daily life. But sometimes a memory will be triggered by the present, and I need to accept that it was part of my journey in order to move on.
I was ten or eleven years old. I’m sitting in a chair in my parent’s bedroom with tears streaming down my face. I remember vividly that I was crying because I was shaking with internal tremors that nobody could see or feel. All I wanted was for somebody to see what I felt. I wanted somebody to tell me that they knew I wasn’t lying or faking to get out of school or to gain attention. At this point I hadn’t been sick for very long (in retrospect) but it felt like it had been forever. I was miserable. I just wanted a doctor to believe me, to help me, to make it stop. Why couldn’t they see it? WHY? Tears spilled from my eyes often during those hard years.
My parents believed me every step of the way. They fought for me. I’m lucky and honest to God, I’m blessed to have them as my parents. They never gave up, and they taught me to fight for myself, my health and my hope.
Nine years later I still have those internal tremors. But as time has passed they’ve progressed. Now I have muscle tremors and spasms that are completely visible. Most days they’re minimal. I can often hide them, or hold my muscles so that they are less noticeable. Ask my best friends or my brothers if they’ve ever seen what I’m talking about and they’ll say “No”. I simply unconsciously hide most of my symptoms around people. I can’t help it.
Yesterday one of my practioners was working with my face and head. Not even five minutes later my eyes, eyebrows, nose, lips, and cheeks were in spasm. They began twitching uncontrollably for the next hour and a half. Soon my arms, shoulders and legs were jerking. The more I tried the relax my face they would act up again. I’d take a deep breath, release, and then a moment later they were back. It’s an odd feeling of vulnerability. I wasn’t afraid to let them happen yesterday, but they were exhausting. I left the appointment completely done-in.
As I lay on the table I was struck with that memory. The odd juxtaposition of my feelings nine years ago with my habit of hiding these tremors today occurred to me. Now I have that vindication. Doctors and those providing care on my medical team do acknowledge that these tremors exist. They are no longer in question. These people believed me and now they can see it with their own eyes. It’s been proven that I was never the young faker trying to gain attention or get out of school. I was a girl who needed help that I didn’t receive until it was long overdue.
So in that light not only do I have feelings of vindication now, but I have a sense of exasperation. I simply shouldn’t have had to wait nine years.
Now my sense of fairness to my younger self is troubling me.
Do I want people to see these tremors? Do I acknowledge her wish? Or do I continue to allow myself to put up a front, a different face now in the present? I don’t know. I almost hesitated to write this post because I don’t know what my final feelings are about this. It’s an internal question that I’m going to have to work out for myself. So if one day you see me and notice these muscle spasms, know that either I’m too ill to control them or, more hopefully, I’m acknowledging that little girl inside me who only wanted to be heard.
I am writing this in response to an article from the Chicago Tribune titled “Chronic Lyme disease: A dubious diagnosis”. You may have read it, if not you can find it here.
After reading this article I was speechless. I wasn’t fuming, or shaking in anger. I wasn’t outraged. I was sad. Sad, because the disease that I suffer from is being called “dubious”; because I saw the errors, the biased misrepresentation of people that I respect.
I’d like to tell you my story.
My name is Molly. I’m an eighteen year old girl who has been sick for eight long years. I don’t remember what it feels like to be well. I have chronic Lyme Disease. I don’t ask for your sympathy, just your empathy while I tell you about the last eight years of my life.
While I was in 5th grade I was in a serious car accident. I was told that besides some impressive bruises I was going to be absolutely fine. Fast forward 6 months. I began to experience severe vertigo, nausea, trembling, and sound sensitivities. In order to walk I had to hold onto walls around me. The stairs in my house were a major obstacle; they looked like they were miles long to me, simply stretching farther than I could comprehend. I can remember the walls spinning around me while I was lying in bed. Almost any sound at all was excruciatingly loud.
I was too sick to continue attending school.
I saw countless doctors, specialists, and therapists. No one had a clear answer for my parents or I of what had happened to me, a seemingly normal girl. Eventually we were told that I was suffering from a Vestibular Disorder, finding a 50% deficit causing the dizziness. A nationally-renowned surgeon wanted to do exploratory surgery to “fix” the problem, even though this had a possibility of resulting in facial paralysis. Instead I went through vestibular therapy for months and very slowly my life began to slide back towards normal. I attended half days at my middle school. I would come exhausted and fatigued but I was happy to have something of my life back.
For the next two years I learned to live with and accept the dizziness and other remaining symptoms; I adapted.
After starting high school, I began to experience several more odd symptoms. This time they were wide-spread body aches, pains, fatigue, and migraines in addition to my previous symptoms. Once again, the doctors were clueless. It didn’t make sense. We consulted specialists and were told that my symptoms were almost textbook for Fibromyalgia, although it was rare for a fourteen year old to be diagnosed with FMS. Sure enough I passed the exam with flying colors. Now I had two diagnoses.
In reality my body was no longer able to suppress the infections we never knew I had.
I was unable to continue attending school, and was forced to withdraw once again. I was in severe pain, at all times. It was relentless. We tried to manage the pain, but the more pain I was in, the dizzier I became. I was in a vicious cycle of symptoms that had a tendency to feed off of one another. I don’t recall much of my life at this time. Entire days would go by without me getting out of bed, or moving from the couch other than to use the bathroom. I was undeniably sick and my doctors were at a loss as to how to treat me.
I was accused multiple times of faking my illness to get attention and to get out of schoolwork. I was told that I was depressed and these symptoms were all in my head. I cried until I could cry no more. At that point I was truly angry. Frustrated, I refused to go to new doctors. I felt that they had failed me. Instead my parents suggested I see an acupuncturist to help with pain management. It is with this that the story of my road to recovery begins. My acupuncturist worked miracles, but I still wasn’t healthy. Something was still wrong. She referred me to a new doctor. Putting aside my fears, I agreed to try one more doctor. Maybe they would have the answer.
After discussing my situation my new doctor suggested testing for Lyme disease. My parents and I were in disbelief. “Lyme? Really? Lyme can do this? Wait – I never had a rash!” Well, yes, it turns out Lyme can do this. It has. I’m the living proof. And most chronic Lyme sufferers never see a rash. This is a complex and mystifying disease. It’s not fully understood, and although there is a recognized treatment for acute Lyme Disease, there is not yet a specific treatment plan for people like me – people who were not diagnosed immediately after being bit by a tick. I have no clue when I contracted Lyme, but I have test results to show that I do indeed suffer from this infection, and other tick-borne infections as well.
My disease is invisible. You cannot see it but my body is fighting for it’s life. Each and every day I struggle to maintain the small improvements I’ve made under the advisement and treatment of my doctor. I’ve been treating these chronic infections for almost two years, and I’m not done yet. I’m not done because I’m not yet well. I still have dozens of symptoms. I’m still sick but I don’t look like it. I am a functioning person, active in my community and the feeling of life is within my grasp.
I have no timeline; I can’t tell you when I will be healthy once again, but I will continue to fight for the remission of the infections that riddle my body.
My Lyme Disease is not the IDSA Lyme Disease. I am not faking, or lying, nor am I uneducated about the controversies and possible risks of the treatment of my disease. I don’t want to dwell on the politics of Lyme Disease. I just want to inform you, and ask of you to look at both sides of the story of Lyme Disease. I’m sorry, but the article that I’ve referred to has simply not covered the whole story. The truth lies in what is missing. There simply isn’t enough information out there yet, and the information available to us is split between two distinctly different camps of people. That is abundantly clear.
It should not be patients vs. researchers/doctors when it comes to awareness and treatment of a deadly disease. How will the sick ever receive the help and care that they need if we must continue to fight, and in some cases, educate those around us?
I find the inaccuracies of what has been reported sickening, and that is coming from a chronically sick teenager. I don’t mess around with that word.
Did you know that the Red Cross has restrictions on blood donations by anyone who has contracted Lyme Disease (Borrelia burgdorferi)? If it is a chronic infection, they will not accept your blood donation. If you were infected and treated acutely, you may donate but they will not accept a donation until 6 – 12 months after you are fully recovered. The Red Cross also stipulates that you may not donate if you have ever been diagnosed with Babesiosis, another tick-borne disease.
What possible sense does this make? The CDC and the IDSA do not acknowledge the diagnosis of chronic Lyme infections, but the Red Cross does and further stipulates specific restrictions on acute infections?
Cleary the medical world is caught in a web of conflicting opinions, and sadly those unlucky enough to suffer from this disease have been pulled into it as well.
Thank you for taking the time to read my story. This is my life. I have chronic Lyme Disease, and I live with it every day. I have missed over four years of school in the last eight years. I have put my life on hold while I treat this debilitating disease that is misunderstood, misrepresented, and scoffed at. I take more pills and supplements than I can count. I wake up each day unsure of what it has in store for me. I am no less sick because of the name of my disease. And I speak for all those without a voice who are fighting the same struggle as well.
I’m grateful for the brave doctors who have stepped out of the shadows to support their patients with chronic Lyme. They are our guiding lights, our tow ropes, and our life preservers. They don’t deserve to be punished for doing what they and their patients believe is the right course of medicine.
Chronic Lyme is real. Educate yourselves.
Please take a moment to read the original response, “My Lyme Disease is not the IDSA Lyme Disease” by Ashley Van Tol, who was quoted in the Chicago Tribune article.
Several other Lyme patients have taken a stand and written responses to this article as well, sharing why their Lyme Disease is not the IDSA Lyme Disease.
Here are just a handful:
Alix’s letter- http://bit.ly/gJoITn
Andrew’s letter- http://bit.ly/efOBxw
Kim’s letter- http://bit.ly/g7MRT9
Brooke’s letter- http://bit.ly/hweVql
Eric’s letter- http://bit.ly/ibWfPW
Candice’s letter – http://bit.ly/hdyj4z
Wishing you health, healing, and understanding,
My LLMD brought up The Big Bad Word at my appointment this week. I hate the word toxins. Even more so do I hate the word toxic. I’m a visual person, and the word “toxic” brings with it only bad images.
I see hazmat suits and warning signs.
My LLMD appointment was on Tuesday. My LLMD is moving to a new building this month, and the next time I see her will be there. I can’t wait. For me, atmosphere means a lot. The clinic I have been seeing her at for months makes me ill. They have those lights that buzz, the nurses wear too much perfume, and the overall feeling of the place is sterile. It has nothing that stimulates healing for me. I really hope that the new office will be more suited for her; I really do. We patients deserve it.
My appointment can be summed up by the title of this post: The Big Bad Word.
I went in feeling that I was herxing. I know what this feeling is. My body is slowly becoming overwhelmed by toxins. The newest antibiotic trio has been working. But, is it too much? If you’ve been reading my blog for a while you’ll know that I’ve always been sensitive to treatments.
I feel as though I take two big steps forward in treatment. I make progress. I taste it. Then, my body forces me to back up again. I feel as though I’ve been in the same place for months. What has changed? Very little, actually. I had those great 3 weeks, and since then I’m back to where I was.
My body is trying desperately to detox. I’m breaking out in whole-body sweats. My skin literally itches. My body is showing signs of trying to shed these toxins but it needs help. I left her office with the names of two new supplements to add to my regime which will aid in the detoxification. One I still need to order, and the other is in the mail already. I should be starting at least that one next week.
My antibiotic dosage has also been slightly reduced in order to help my body adjust. We’ll see if between these things I’ll see a difference. I hope so. Right now I’m living in a fog. My head feels as though it will explode at any moment, and my overall pain levels are increasing. My fatigue has struck again. What I laughingly refer to as my memory is becoming tiresome. I’m shaking like a leaf.
My daily functionality differs day by day.
Today I had plans to go shopping with my best friend. We ended up staying at my house, making popcorn, and watching Robin Hood: Men in Tights. All in all – it was a great day!! I’m grateful for it. I had so much fun. I laughed. I smiled. We talked. I loved this day. But our plans changed because suddenly this afternoon I was hit unexpectedly with a wall of fatigue.
I literally turned off my computer, the lights, and fell asleep on my couch for 20 minutes. I never take naps. When I do, I know it’s serious.
Maybe that’s why I enjoyed Robin Hood: Men in Tights so much today… humor to heal the herx? I’m willing to give that a try. Anyone ever tried detox by laughter?
Laughter heals – that much I know. But does it detox?
Well, it can’t hurt :)
Wishing you health & healing,