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It’s too late to do anything and too early to sleep. So I go through my options. I could read, but I’m not excited about my library book at the moment. I could watch a movie. Oh, wait, I already watched two today. Or, I could come talk to you, lovely readers!
How are you? Are you having a good holiday season? I certainly hope so! Living in Minnesota, we’ve had enough snow lately to guarantee a white Christmas like I’ve never seen before. I live on top of a hill and some of the windblown snow heaps were thigh-high last weekend! We were literally snowed into the house for a while there. And it’s cold too.
I’ve kept inside. I love winter, but this year I’ve lived it indoors, usually from the comfort of my couch with a cup of tea in hand and a classic movie playing on my dvr. To be fair, I’ve watched a few Christmas movies! I have to do what I can to get in the spirit of things.
I have to admit though, I’ve been feeling awful for days and I can’t seem to get into the holiday spirit. Yet. I know I will, I always do. I love Christmas. It’s full of family, and food, and laughter. Warm memories. Part of my problem is that fact that I’ve been feeling too ill to bake cookies. Every day I wander into the kitchen, look at my shiny new set of cookie cutters on the counter and sigh.
“Not today. Tomorrow.” I tell myself.
I don’t know what’s going on with me, but something is. Maybe I’m herxing, or I’m beginning to become more toxic. I don’t know. I need to tell my LLMD but I’m not sure what to say. I’ve been trying to think of how to describe this, but no concise explanation is coming to mind.
My head aches. My abdomen is swollen with the feeling that it’s my actual organs that are so painful. I’m dizzy, fatigued, nauseous. I’m shaking like a leaf and am conscious of my rapid pulse. My limbs are falling asleep when they shouldn’t. I know I should exercise more, I really am too sedentary, but this is getting ridiculous! Yesterday I was crouching down when my leg began to fall asleep. I’m growing somewhat used to this, so I ignored it for a few moments longer. Bad choice, Molly. When I stood up I had a horrifying moment where I couldn’t move or feel my leg. My foot wouldn’t leave the ground. The moment I stopped trying, my foot jerked out of place and I would have fallen if I hadn’t caught myself on a nearby chair. In this ordeal I rolled my ankle, too!
Today I spelled my name wrong while I was writing my signature.
All I feel like doing is curling up into a ball and waiting for it to be over. This too shall pass, right? That’s what I keep telling myself.
Lately I’m canceling plans with friends, avoiding cooking, and I’m sure my tone of voice isn’t doing me any justice. Here I am, a week away from Christmas and I want to spend the days wrapped in blankets on the couch. I’m barely moving.
I was having a tough few days before I saw my acupuncturist this week. I told her all about my LLMD’s concerns over toxicity, and she got to work. I’ve steadily gotten worse since then. I think some of the toxins have been released, and I’m working to get them out. A detox Epsom salt bath is on the docket for tomorrow! And I’m very grateful to have another acupuncture appointment next week.
Tomorrow is a new day. I have hope it’ll be a better one than today. I’d love to start getting some of the Christmas decorations up around the house. Who knows, maybe I really will get to make those cookies tomorrow!
Peace & healing,
Instead of a quote, I thought I’d post a photo of a quote tonight. I like to change it up :)
The other night I saw this in the book I was reading and I thought I’d share it.
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,
It’s so hard to gauge where I am in my healing process. And. it’s hard to admit that, too. I’m functioning… to a point. I’m not spending every waking hour on a couch anymore. But I’m not even close to feeling how I wish I were feeling. I like to think that I’m in touch with my body. I have an awareness that it’s taken me years to become comfortable with. Lately, I feel disconnected.
I’m not even sure I can put my finger on a the words to describe how I feel.
At my last LLMD appointment my doctor looked at me and asked me honestly what timeline I had in my mind for continuing treatment. I was quick to say that I didn’t have one. I know that I’ve got years, and years ahead of me before I’m where I need to get. I went untreated for sixteen years. I’d rather not disillusion myself about that.
After some discussion we decided to back down on my treatment. Again. It feels right to me, yet at the same time it’s so absolutely counter-intuitive. My first reaction is to treat the crap out of these infections. The harder and quicker we do that, the sooner my life will be in my own hands again. I’m doing my best to not disillusion myself here, either.
Sometimes it’s just time to walk away. Find the next window to climb through, since doors seem to be barred.
My LLMD uses both traditional antibiotics as well as herbals to treat Lyme. I’ve always used both in my own treatments. I felt that taking the middle road worked for me. It made sense.
Last month I stopped taking the herbal tinctures. I still have supplements galore, but the tinctures were too much for my poor body to handle along with the antibiotics. So for now I’m depending on my three antibiotics to do their job… and I’m doing the best I can to cope with the havoc I feel within me.
I’m having migraines again. They suddenly reared their ugly head last month after about 5 months without them. Needless to say, I was not happy to have them back. When I’m not having a migraine, I’ve got a headache. Always. I have had rashes appear overnight. My abdomen is swollen again. I ache. And I cannot for the life of me stop sweating. (Yes, I know that’s gross. I also know many people reading this will understand.) Hot sweats, cold sweats – you name it. They won’t stop. It’s incredibly uncomfortable, let me tell you! I can be at home resting, out with friends, or just sleeping, and I’ll break out in a sweat. UGH. On top of that I still haven’t gotten rid of the shakes.
These things could point to toxicity and my body trying to detox it. Or, I could be having a herx. I’m really not sure! My LLMD was worried about neurotoxicity at my appointment. By no means am I an expert… but that just doesn’t sound promising…
My next appointment is in January. Actually, I think this is awesome. My appointment is on 1-11-11 at 11 o’clock. Totally by accident too!! We’ll see what happens then. In the meantime, I’m going to do all I can to help myself make it through the craziness that is the holidays.
Today was actually a great day! I took it easy because last night I went out. I’m SO proud of myself. I managed to take a shower, wash my hair, get dressed, make lunch/dinner, clean my room, and reacquaint myself with my make-up – all before I went out to surprise my brother for his birthday. My sister-in-law arranged for family to meet him at his favorite comedy club for a show, and he had no idea!! It was so much fun! I haven’t laughed that much in ages – and those that know me personally will vouch for the fact that I laugh a lot! I’d never been to a live comedy show, either. So it was exciting :)
I was worried that today I’d be paying for it, but I feel pretty good! I’ve got my normal headache, and I’m a bit dizzy when I stop and think about it. Oh, and those sweats haven’t disappeared. But I was expected much, much worse. YAY!
I woke up late this morning. The house was empty, and peaceful. My whole day was like that. I even felt a huge creative spark this afternoon. I sat down with my beads for hours. It felt so good! I think it had something to do with the fact that today I’m wearing my purple leggings… color always inspires me.
I’m hoping the rest of my week will continue to look up!
Peace and healing,