Hope.

emily and isabelle, originally uploaded by sweet sweet life.

 

I’m working on finishing the update from the appointment with my new LLMD and it’s taking me a lot longer to finish than I had expected. It’s slow going as I’m patient with myself, my memory, and my symptoms.

In the meantime I have two things to share with you. First, this lovely photo I found this morning. I have always loved this poem! It was the inspiration I needed and just the reminder I wanted today; I hope you enjoy it too!

Secondly, I wrote a new piece this week that I’d like to share with you. I like to think of myself as an aspiring writer, but with Lyme I feel that most of my creative writing has gone on the back-burner. I haven’t written a thing resembling poetry, stories, or anything remotely creative in ages. But these words just poured out of me in a way that I was craving. I’d like to invite you to read this.

I’m calling it my break-up letter with Lyme.

Before You Go Away

One action, one thought, one moment at a time.

I have both exciting and nerve-wracking news share with you! My current LLMD has been recommending that I seek a consult with a more specialized  and experienced LLMD since last winter. We’ve been putting off this move because, quite honestly, the expense of a non-insured LLMD is astronomical. However, my health has been steadily declining since January of this year. In fact, I’d go so far as to say that 2011 has been one of my absolute worst years in the course of my illness. My LLMD has admitted that I’m beyond her abilities at this point.

We took the plunge.

An appointment with a new LLMD was scheduled. The only problem? I was distraught to hear that I wouldn’t be seen until December. I knew I didn’t want to go on living like I have been. I hoped for something – just something – to surface. 

And, here comes the exciting news – it did! This week we received a call saying that if I wished I could take an appointment that was open after a cancelation. We took it!! I see the new LLMD next Wednesday, the 7th of September!!

Please keep me in your thoughts and prayers sending positive, healing vibes for next week’s appointment! I’m hoping to receive some expert guidance and a new treatment protocol.

At the moment I’m feeling overwhelmed with the intense paperwork required, the tests I haven’t had done yet, and the thought that I have a 3 hour appointment ahead of me where my whole story and every single symptom from the last three years will need to be retold and analyzed. I’m excited, nervous, and crossing my fingers that this doctor will finally hold the answer I so desperately need.

I’m taking many, many deep breathes, drinking tea to soothe my stomach and my soul, trying to recapture lost memories, and generally taking this all as it comes. One action, one thought, one moment at a time.

 

With love,

molly

 

“May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism.”

One day at a time.

day 333 : 365, originally uploaded by danisoul.

Reliving the Past

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

One step forward.

 

This morning a cloud lifted and let a few precious rays of sunshine into my life, even if it was for just a few hours. Today was one of those rare days amid Lyme Disease treatment that reminded me what I’m fighting to have. I felt human today.

It was wonderful not to feel like I have lately. And not to look like I do in this picture! These last weeks have been some of the worst I’ve had in the past 2 and 1/2 years. And so, I had to share this moment of celebration with you all!

I’ll be back soon to update you all on what’s happened lately. Friday is a big day for me. I’d appreciate if you could say a prayer, send some love, light, & support my way. Or just keep me in your thoughts!

Much love.
molly

MIA

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

One Year Ago Today…

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