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Those are the words that my LLMD said to me last week. “We’re finally winning.” I can’t even begin to describe what hearing that was like. I heard the words; I smiled. But those fantastic words didn’t sink in right away. I felt… like I was staring down a beautiful cliff, unsure of what I was doing there and what I should be feeling – awe from the spectacular view or fear from being so close to the edge.
I was talking to another Lyme friend of mine recently about how hard it is to trust those words I was told. Here’s a snippet of what I said, “I haven’t ever lost hope of recovery, but somehow this feels different now. It’s not sometime in the future. It’s starting right now. I want to accept that gratefully, but I’m still protecting myself from the possibility I’ll get worse again. It’s a fine line…”.
Like I said, I have never lost hope. I believe that we will all find days of health ahead of us as we recover from these life-altering infections. We will.
However in order to function each day, in order to allow myself to put one step in front of the other, I do have a wall of protection that I keep up. Maybe that’s a good thing, maybe not. I don’t know. But I know that it’s there.
I think it was the day after my appointment that they finally began to sink in. I gleefully told my acupuncturist about it the next morning, and I remember the joy in the conversation. I could feel my face light up. That was the first moment it felt real. I hope I never forget that feeling!
Now I think I’ve accepted the fact that I am actually improving. I’m not feeling much of a change in my symptoms, but I can only hope that soon my body will catch up and give me a much-needed break!
I haven’t blogged much this year. I simply haven’t felt up to it. Computers often make me sick, and my symptoms have truly overwhelmed me in the past few months. However, I’m thrilled to say that this week I’ve felt better. I’ve had more energy, and my mental clarity has felt just a bit sharper. I’m even happier that I’m feeling better today of all days.
Today happens to be my birthday.
I think that feeling the way I do today will be one of the best gifts I’ll receive!
Today I turn 20. Where all the years have gone, I have no idea. I wish I could have a few of them back! I feel older than my age, not surprisingly. But I’m so glad that in reality I am just 20 and not 83 – like I feel many days. My wish this year is that I’ll finally be feeling well enough to live a little. I have dreams and adventures, things to do and places to see! I’d like to start crossing things off my bucket list! If today is an example of the year ahead… I think my wish will be coming true : )
Another phrase my LLMD said to me in my appointment has stuck with me also. She said, “You’re doing amazing.” Imagine that… I’m doing amazing! I think she was as surprised as I am.
I’d like to celebrate my new year each amazing moment at a time. I’m going to savor them.
Peace and healing,
molly
One of the worst aspects of Lyme is the setbacks. Lyme is a disease that keeps on giving – one new symptom after another.
I’ve been quiet for so long on this blog, but I’ve thought about it and you who read it, nearly every week! I spent a long time this afternoon going back into my archives and rereading many of my posts. I’ve had so many up’s & down’s while treating this disease, I’d forgotten most of them. Perhaps I chose to forget them, who knows.
I think it’s time now for me to post an update on my progress and my life (or lack thereof) since it’s been so long since I have.
2011 has not been the best year for me, medically speaking. It feels like one big experiment-gone-wrong. I don’t remember a time this year that I fell well, really well. And it’s June already. Half of the year is gone!
I’m going to be honest. I feel worse now that I did at this point last year. Last summer I was in much better shape! I was excited and felt like I was finally on the right track in my treatment. Now fast-forward to this spring… I’m having a repeat of spring 2009. I’m going through the exact same symptoms, diagnoses, and experiences. I feel as though I’m reliving this part of my treatment.
Today is day 36 of a life-consuming pressure headache. At times, I’ve become non-functioning because of the pain of this headache. Some of you may remember I went through this in 2009 as well. My POTS (Postural Orthostatic Tachycardia Syndrome) is back with a vengeance, and my fatigue is insane. I don’t know about you, but I live on my couch. We have a symbiotic relationship.
Since I was following a similar pattern to 2009 we immediately thought of my eyes. Were my optic nerves swollen again? So in I went to be checked out. After many weeks of patience, and follow-ups, I was told on Friday that I need another spinal tap. I had 3 in 2009. I was really, really hoping those would be enough for a lifetime! I’m scheduled to have my 4th done this Thursday morning. Better sooner rather than later. I’ll know the results sooner this way, and hopefully have some answers. My neuro-opthamologist is LL and is concerned that I may be experiencing pseudotumor cerebri, a condition where the brain behaves as if there is a tumor present, but there is none. The number one symptom of this is unexplained increased intracranial pressure, which is what the spinal tap is for on Thursday.
However, I don’t know what to wish for. Do I want to have pseudotumor cerebri – another medical condition that is reversible, but needs medication and/or invasive assistance? Or do I wish for a normal, low pressure from the spinal tap and therefore have all of this be attributed to random Lyme-related symptoms? I just don’t know.
In addition to that development, I’m now completely off of my Lyme protocol. My LLMD and opthamologist told me to back off for now until things calm down. I was put on beta blockers a few weeks ago to calm my rapid heart rate and I’ll be referred to a cardiologist sometime this summer. I think the beta blockers have helped the POTS a bit and the fatigue, thankfully! My LLMD believes that m adrenals are a problem again and I’m most likely iron-deficient. I had a slew of blood tests done on Friday and I’ll learn more in a few weeks.
I’m afraid my LLMD is feeling overwhelmed by me. I’m not getting any better yet, and she’s afraid of making me worse. I’m taking this all one day at a time, but I really am beginning to feel overwhelmed myself!
I’ll be back soon. I’ve missed you all!
Wishing you health & healing,
molly
Every day is a journey filled with twists and turns. Every day, if you smile, you will feel alive, my son. — Santosh Kalwar
Yep. I went MIA again.
I had my wisdom teeth out a few weeks ago, and I’ve been recovering. Slowly. Very, very slowly. I (of course) had some complications after the procedure and I’m not healing as quickly as I’d like. Hopefully just a few days more, and I’ll be back to my normal self.
Hope everyone is having a lovely weekend!
Much love,
molly
“The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.” – Philipus Aureolus Paracelsus
I thought it would be fun to look back and see what I had posted on this day last year. Oddly enough it fits with my day today perfectly!
So I’m sharing it with you again.
Let me just say…
February 12, 2010 in Living Life Tags: Feel Good, Healing, Inspiration, Lyme, Lyme Disease, Photos, Positive Thinking, Quotes, Smile
37/365 – hello sunshine!, originally uploaded by orangesparrow.
Good morning! Thought I’d pop in with a smile. I hope you have a absolutely lovely day today! Inspire others. Find your joy. Search for peace. And let Lyme slip away from your thoughts for a moment. We all deserve a break!
I’m working on an update for you all. School deadlines have got me exhausted this week, but it’s coming, I promise! Oh, how I’m looking forward to a nice three day weekend.
Much love, molly
"MAY THE SADDEST DAY OF YOUR FUTURE BE NO WORSE THAN THE HAPPIEST DAY OF YOUR PAST." – IRISH BLESSING
There’s a running joke in my family that I’m a “medical mystery”. I went from normal to suddenly, devastatingly ill far too quickly. No doctors could fully answer all of our questions. I was bounced around from one specialist to another for years. I was unhappy, and honestly, I was angry that nobody could find a solution.
That is, until two years ago.
I began my Lyme disease journey on January 1st, 2009. I still remember staring at that blue Doxycycline capsule for a long few moments before I finally took the plunge and swallowed it down, along with some apprehension and a lot of relief. Finally somebody had looked at me as a whole, sifting through the symptoms and found an answer for me!
Lyme. Bartonella. Babesia. The list goes on.
Two years later I’m still treating. And, it turns out that I’m still that “medical mystery”. Above all else in a doctor I want them to be honest with me. I need them to talk to me so that I learn to trust them and they trust in me. I love my LLMD dearly. She has been a rock in this journey. However, she’s not strictly speaking an LLMD. She treats Lyme, but not exclusively.
In January she was honest when she turned to me in her office and told me that she didn’t know what to do next. Her treatment regimens weren’t working with me as she had expected them to. She is afraid of making me more toxic, creating more harm than good. I don’t blame her. I just wish this weren’t the case.
She wants me to visit another Lyme specialist for a consultation and receive a second opinion. I was instructed to see a neurologist for my headaches, and to see my neuro-ophthalmologist for a check-up. I feel as though I’m back where I was two years ago, being doled out to different specialists while they scramble to solve the puzzle.
Molly, “medical mystery” at your service.
I haven’t lost hope. No, as I said last week -“I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.”
I’m waiting for my turn to discover those calm waters.
Much love,
molly
“Everything will be okay in the end. If it’s not okay, it’s not the end” ~Unknown
I’ve always been a firm believer in the knowledge that life isn’t all black and white. We live in the gray, and we make the best we can of what we’re given.
However… I never thought that the concept of being “healthy” would appear to me as something nondescriptly gray. Theoretically it’s such a clear-cut, simple issue. Not always so.
I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.
I have so much to share with you! You’ll have to be patient with me as I grapple with the correct way to explain what has happened to me in the last few months of my Lyme treatment journey. Tonight, I’ll share the most important part.
My doctor and I (for various reasons I’ll explain at some point) decided to take me off of all my pharmaceutical antibiotics this month. It’s been just over two weeks now, and I’m lost. I have absolutely no idea how my body feels about the change. I have had such trying months since November, that I was truly not sure what to expect.
I’m being treated for an intestinal yeast infection in the interim. Which – if I may sideline for a moment – sucks! My abdomen is still swollen and I believe I had a significant herx right after beginning treatment.
Since the 11th I have had days some good days, and some horrible, and too many in-between. Nothing is constant. I’m searching for clues, taking mental notes, observing myself. Some symptoms are better and others are worse.
I’m adrift, keeping my head above water in the gray. I’m frustrated. But at least I’ve earned myself a medication vacation for a while :)
Wishing health & happiness abound,
molly
“Each time we face a fear, we gain strength, courage, and confidence in the doing.” -Unknown
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,
Molly
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