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

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

Finished.

Tomorrow is the big day. It’s the day I’ve worked to earn for the past four years, no matter how impossible it felt. Tomorrow I graduate from high school!

I could cry. I honestly, seriously, could cry. I was told two years ago that there was no possible way I would ever be able to catch myself up enough in order to graduate with my class. I wanted to prove to myself that even with my health in the state it was, I wasn’t going to let my life get pulled out from under me.

I needed to prove to myself I could do it. And, I have. I did it. I worked at home with tutors, through summers, and online in order to complete high school and still continue my treatment. I know my family and friends are incredibly proud of me. And I’m genuinely proud of myself.

I couldn’t tell you how I did it. I wish I had a secret to pass on to those others working though high school with chronic illnesses. The last two years are a blur. But tomorrow I’ll don a royal blue cap and gown and walk across that stage. I know I won’t have to remind myself to smile!

I’ll be back with a celebratory post as soon as I can.

Thank you for your continued support; it has meant so much!

 

Peace and healing to all!

molly

 

“Success means having the courage, the determination, and the will to become the person you believe you were meant to be”           – George Sheehan

A January Update (Yes, I know it’s February)

I’ve been working on this post for so long that I barely remember what it all was that I wanted to say. In fact, this post has been so long in the works that apparently I’ve got another appointment with my LLMD next week. That works out wonderfully since I’ve forgotten my last one! (Surprise, surprise.)

I do remember that last month I walked into the office in the midst of my abdominal troubles. Near constant pain, swelling, and complete loss of appetite. My doctor had me get an ultrasound for a suspected enlarged spleen. That ultrasound came back within normal limits. But I was still left with the pain, not to mention the swelling. There really wasn’t much we could do. I wrote about this extensively here.

I also had a blood draw that day to check on my liver panel. Being on the Mepron was worrying with the toxicity, and now those new symptoms. Last week I came home from the Senate hearing and found a message from my LLMD waiting for me. My liver panel numbers were significantly higher than my December results had been. At my January appointment we had decided to wait and see what another month on the Mepron would produce. My Babesia symptoms had flared, and not broken yet.

Instead, with these new liver panel numbers I was instructed to stop the Mepron until we could discuss the situation with my doctor in depth. So, I was on the yellow stuff one morning, and off that night. Just like that!

I think it shocked my system, frankly. Last week was one long herx. I barely made my school deadlines, and by the end of the week I had a migraine like I hadn’t had in months. I can only describe it as a headache so intense that it reminded me of the ICP episode of last year. I had a constant low-grade temperature, and an increase in brain fog.

But by Sunday morning I was feeling well enough to follow-through with my plans to volunteer at my old elementary school’s Mardi Gras, and then spend the afternoon with friends. It was a joy! And, I couldn’t believe my luck when I felt well enough the next day to spend another afternoon with friends! Things were looking up. The herx had lifted. Lifted, that is, all except for one symptom. I’ve still got the headache I got the day after I stopped the Mepron. It’s no longer a migraine, but it’s a headache. And it isn’t letting up.

As far as I can tell I’m still showing symptoms of Babesia. But, I’m waiting to hear my LLMD’s opinion next week.

I feel differently since stopping the Mepron, however. I don’t know how to describe it. A word isn’t coming to mind. I think my energy levels are a little higher, and my stomach has felt better since last week. My concentration level and cognitive functions are fleeting though.

Yesterday I couldn’t settle down to work on homework. Something just wouldn’t let me concentrate on what was in front of me. Instead I found myself making bread. Gluten-free bread. From scratch! I don’t even remember starting – I just recall being in the thick of measuring flours and smelling yeast. I made a big pot of quick lentil soup for dinner (I’ve been craving lentils like crazy!), and threw together a chocolate pudding to set overnight. I was a madwoman in the kitchen and I could barely stand by 7 o’clock.

I do feel that I’m not getting enough probiotics in my routine. And, adding more can only help my abdominal issues. I do take a supplemental probiotic, but I want to be adding additional foods to that. So – deep breath – starting this week I’m going to begin brewing kombucha (fermented tea) and give that a shot. I’m also very interested in water kefir as a dairy-free kefir option.

I had the opportunity to spend the afternoon today at the MN hearing for the house version of the Lyme protection bill, HF 2597. No vote yet. The bill was tabled.

More soon. I feel sleep coming, and not a moment too soon.

Peace and healing, molly

 

“So what do we do? Anything. Something. So long as we just don’t sit there. If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late.” – Lee Iacocca

New Blog Features

Hello, everyone! There are a couple new features to find here on the blog, and I thought I’d give you a head’s up.

First, on the left-hand side of the page is a new email subscription feature. I’ve always had the Feedburner email service, but I wasn’t ever completely satisfied with it. WordPress has come out with a service of it’s own that I’m excited to try! So, if you’re interested go ahead and test it out. It will email you the complete blog post (not just a snippet) minutes after I post it and give you a link to comment. I like it – I signed up myself just to see what it was like! And there’s still the feed subscription here as well.

I’ve also created a new page called Lyme in Action. Do you ever have complete and total Lyme moments? The ones you just can’t explain? I do! Check out Lyme in Action to laugh with me as I share my own.

And lastly, this isn’t a new feature but if you missed my update on the MN Lyme bill you can read about it here.

 

Enjoy!

 

“Laugh as much as you breathe and love as long as you live.”

Nerves, Nerves, Nerves!

I’m jumpy lately. I jump when my name is called. I jump when I see somebody walk into the room. I jump when my dog’s toys squeeeak. I jump when my phone goes off. I even jump when my phone goes off on vibrate!

In short, I jump. Do you jump?

I feel like my nervous system has gone haywire on me. I’m having nerve pains everywhere, and like crazy. I can’t stop shaking. And now this sudden jumpiness. More Neuro Lyme symptoms?

What gives?

This must be a new level of herx.

More soon, love you all. I’m dead on my feet and my book is calling to me.

“Happiness means quiet nerves.” – W. C. Fields

Some changes are afoot…

First, please allow me to assure you that I am living, breathing, and alive! It’s been a tough few weeks, but I’ve missed you all. Let’s hope I can back into my blogging mentality again. I like it there.

I’m playing around on the site, and I think you’ll be seeing some changes in the next few weeks. Hopefully. So far I’ve changed up the theme {as you can see}. I love the fresh, Zen quality. I’m finding it calming. And, the blog needed a change. A facelift, shall we say. Do you like it?

And check out my new “about me”  section. I’ve updated my story since January. Hope you enjoy it!

I’ll be back later with a longer update. Tonight I’m hanging out with my friends, so I’m really looking forward to it. It’s been so long since I’ve seen them! It’s hard when I’m at home every day, and they have school and all the extracurricular sports and activities to be a part of. I love it when they make the time to fit me in!

Wishing an abundance of peace and healing for us all! – molly

 

“Be the change you want to see in the world.” ~ Mahatma Gandhi

{Come on, who doesn’t love this quote!?}