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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.
Recently I’ve been wondering how to accept the time I’ve lost. The years of college and experiences I’ve missed. Then I remember that every single thing I’ve done and gone through in the past has helped shape and mold me into the person I am today.
And you know what? I like the person I’ve become today. And for that I’m grateful.
This quote resonated with me today. It seemed to answer a small voice in my head that needed to be heard. I hope it helps somebody else today too.
Intentions are a powerful thing. This awesome universe that we live in works in mysterious ways. I’ve had this proven to me time and time again. I don’t know why it still surprises me, but it truly does and I’m glad! I want to be surprised by the world we live in. Life wouldn’t be nearly as much fun if it were a series of predicable events.
I wrote on my birthday that I wanted to start living life again. Imagine what the universe threw my way…
I watch more TV than is good for a person. I admit it. One of the shows that my parents and I love is USA’s Fairly Legal. It’s about a woman trying to keep her crazy life together while helping people with their own problems as a mediator for a law firm. At the firm she has an absolutely wonderful & hilarious assistant, named Leo.
I love Leo. I want an assistant like Leo in my life. He could help me manage my dozens of pills each day, make phone calls, help with SSDI paperwork, drive me to appointments and just help keep me sane in an unpredictable life. I could really use a Leo.
But, I don’t have a Leo. So I watch the show and I laugh. The actor who plays Leo is Baron Vaughn. Baron Vaughn happens to also be a comedian. Which, made perfect sense once I found that out! The man has me in stitches on the show, seriously. And those of you who know me personally, yes I do laugh at almost everything and yes I do laugh so hard there are tears present at least once a week, but honestly, this dude is funny!
Friday night after my friends had come and left (more on that later), my parents had gone to bed, and I was wide awake I was on IMDb looking up actors in another USA show, which led me to Wiki, which led me eventually to Fairly Legal and Baron Vaughn and then to his personal website. I have no idea how I leapt from one thing to another to another until I landed where I did, but I believe it was the universe doin’ it’s thing.
Have you guessed yet what it was the universe threw my way?
Baron Vaughn was in Minneapolis doing a show at a local comedy club the very next night! I couldn’t believe it. It seemed like a cosmic answer to my intention. I wanted to life live a little. Well, I did. Saturday night I found myself dressed in actual clothes instead of sweats and sitting in a club laughing at a wonderful comedian in person instead of in my living room on the TV.
It felt magic.
I laughed so much I was sore afterwards! He has such a wonderful sense of humor. My parents and I were impressed with his intelligent wit. So enjoyable! It was just what I needed. Mom and Dad, I know you’re reading this. Thank you for taking me!
My dad nearly fell out of his chair I believe when he asked from the stage if anyone was following a weird or unusual diet. I laughed, but I didn’t want to try to explain mine! Too complicated. And way too much fodder for him to expound upon! He went into a story about how he was trying to kick sugar and how HARD it is to do. My favorite part of the show!! I could absolutely laugh in understanding, unlike those around me who had no clue for the most part.
Check out his website for videos of him sometime if you need a laugh.
So the universe has proven to me once again that it has a hand in our lives. I’m not saying we have no choice, no free will. No. And I don’t know if I believe in fate or in destiny. I just know that I believe in the power of intentions. I put that wish out into the universe and the universe answered back; it acknowledged it and honored it.
I enjoyed myself in the moment, drinking it all in, just like I had wished.
What will the universe and I do next? I’m curious! I’m keeping myself open and my intentions out there. Life is a beautiful thing.
peace and healing,
The goal of life is to make your heartbeat match the beat of the universe, to match your nature with Nature. — Joseph Campbel
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,
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,
Every day is a journey filled with twists and turns. Every day, if you smile, you will feel alive, my son. — Santosh Kalwar
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.