Vindication, or Exasperation?

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.

 

xo,

molly

Molly, “Medical Mystery”.

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

A Medication Vacation

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

It will be ok in the morning.

WTJ: This page is a message, originally uploaded by AmyFlorence.

I’m tired. More than tired. I feel… weary. That’s just not a pretty word. I hurt. I’m in pain. I’ve had a long weekend, and I haven’t even done anything other than rest. I can tell I needed it. And, I can tell I still need more of it.

But…

It will be ok in the morning. I think so. It will, right? It’ll be better. Every day is better than the last, no matter if I can feel that or not. I know it. That’s what matters. Each day is better than the last because I’ve survived one more day of treatment. I’m one day further in my journey, and I have less road to travel tomorrow, and the day after.

We all keep going. And somewhere deep down I think we all need to know it WILL be ok in the morning. The sun will rise, time will tick by, and we will continue our fight.

Keep up the hope,

molly

Two thoughts forgotten, one remembered.

I’ve been meaning to write this for over a month now, but I’ve never gotten very far on it. Oh, I’ve opened my writing program, dashed out a few lines now and then, but it never felt right. Nothing ever clicked. Nothing ever seemed right. It still doesn’t.

But I’ve decided {albeit belatedly} that this is what needs to be told. This difficulty to write is a symptom. Writing has never come hard to me. This, this isn’t normal. No. It’s a symptom, and I want to have this chronicled, if not for myself then for all those others out there who know what I’m talking about.

I feel as if there is literally a blockage in my brain. The frontal lobe has separated, and I can’t connect the pieces. I feel as if most days all I get accomplished is simply running around after myself picking up the small bits I keep dropping, only that I won’t notice until tomorrow that I really didn’t pick up any more than I missed.

Two steps forward, one back. Two thoughts forgotten, one remembered.

I feel disconnected. My body is telling me things and I’ve lost the decoder key. That’s never good.

I see my LLMD this week. I’m still not sure what I’m going to tell her. Maybe writing this will help me pick out the bullet points, I don’t know. A month ago I didn’t know what to tell her either – other than exactly what she had been waiting for me to say. I told her that I was placing myself in her hands, and she could do with me what she willed.

Of course, I’ve been doing that for over a year. But this is different. I told my doctor that the time has come for me to hand myself over to her. I have no school, no job, limited plans, and an entire year to concentrate on healing myself. I told her that she could throw at me whatever treatment she felt would be best for me and not worry about how the treatment would affect my life. This is what this year is for, I told her.

You should have seen her face.

She knew this was coming, and was she ever prepared. I’m now on a trio of antibiotics which are supposed to be working in unison, as well as an herbal tincture. I won’t get into the specifics of medication names – maybe I will at a later date – but I’m absolutely sure that I’ve gotten myself into exactly what I knew I would.

I’ve opened a door, and walked through it. I’ve committed. This is Lyme Disease treatment, baby; and I’m grateful for it!

At first I was shocked. I didn’t feel a horrible herx. Every day I took my dose in the morning, afternoon, and at night and just waited. I waited to feel something. And I did. Soon, I felt –gasp– better!

Each day flew by. I was making jewelry, rolling paper beads and listing items on Etsy. I was talking to friends. I was doing things!

One morning I felt different, and not in a good way. I spent that day on the couch. I gave myself time. And the next day I was up, feeling great again! I couldn’t understand it – but I wasn’t questioning it. About another week went by before I spent another day completely on the couch. Then, slowly, I began to notice more symptoms each day. Little things piled up.

Cold sweats, heart palpitations, constant, nagging headaches, and brain fog crept up on me until before I knew it they felt normal again.

I’m so, so grateful for those blissful few weeks! They gave me time to feel my feet grow steady under me. I enjoyed them! I was tired, of course, but I was never actually sure whether I was tired from being sick or tired from doing too much because I felt so good. Those are the days I would choose to live over again. When I look back on this month, they are the ones that I remember. I don’t recall what caused me to spend a day on the couch 3 weeks ago. But I do remember getting to listen to live Irish music downtown with one of my oldest friends. I do remember all the jewelry I made, and the family who lovingly supported me whilst doing it. I remember the days that I could cook, rather than the times I was too sick to eat, even though I know both of those things happened. They must have. 

Some of these things I’ll blame on the whole horrible-memory-due-to-neurological-Lyme-disease thing, but I want most of the credit for this to go to the fact that there were just so many more good days than there were bad, and that’s something that I haven’t gotten to say in a really, really long time!

I might be hitting a herx now, but I had some great days before it hit. I think we’re on the right track. And I think now I have a better idea of what I’ll be sharing with my doctor this week.

As far as my blogging goes – look for me. I’m intent on sharing my healing journey with you all, and that involves the ups, and the downs. And I’m telling myself that my writing won’t improve at all by ignoring it. I need to polish the tarnish away, sweep away the cobwebs, and join the land of the bloggers again.

 

In peace & healing,

molly

 

“Happiness is nothing more than good health and a bad memory.”  – Albert Schweitzer

Jan. 1st, 2010 – My 1st Lyme Anniversary

Please, let me apologize for my (very) prolonged absence. The last few months have been rough, and I think I needed the time away from the blog. It was hard; I felt the loss, but this Babesia has really hit me hard.

However – I have so much to share and so much to tell you! Life hasn’t stopped since I left you. No, it definitely has not. It’s gone marching forward. So far forward that before I knew it January had snuck up on me.

I’m feeling profoundly grateful. And add to that a sense of pride, hope, and determination, too. I’ve officially survived a full year of Lyme treatment! And what a wild, crazy & unexpected year it was! On January 1st, 2009 I took my first dose of Doxycycline, and began my Lyme journey. Three days ago, a full year later, I was with my closest friends as they watched me deftly swallow my Mepron and force down almost 20 pills. But I didn’t care. Do you know why? Because I survived.

Thank you – from the very bottom of my heart – to all those who helped me though this journey, and to those of you who helped me celebrate my anniversary! I don’t know what I’d do without you. You’ve paved the way for my small successes against this disease.

Photos and a longer update will come soon!

It’s a new year, a new decade, and a new year of Lyme treatment. I don’t know what this year has in stock for me. I can’t pretend that I’m prepared for it. But I am ready to feel the victory this time again next year.

Happy belated New Years! Wishing you a peaceful, and a healthy year filled to the brim with joy, happiness, and hope.

Cheers!

 

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope”

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” ~ Bill Cosby

I usually leave you with just one quote to ponder with me. But tonight I’m offering two. Hope, and laughter have been some of the best medicine for me this year.

I never could read a map

ParentsPstcrd_081509.jpg, originally uploaded by Pedestrian Typography.

I saw this today, and it hit a cord with me. This has got to be the road-map for Lyme treatment, no? I mean… we start out “here” and end up “there” after so many bumps, curves, twists and turns that we come out not knowing which way is up but so glad that we made the journey. Or, at least, I assume that’s how we’ve got to come out of this crazy trip.

This makes me smile. And then heave a huge sigh. But, at least according to this map there is an end destination for us all. That’s all I need to know, really. I’ll take it one day at a time, knowing that there is, indeed, an end.