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Yesterday my parents and I drove out of town to see my LLMD. It’s not too far away, but it’s not close by like my other doctor. We usually stop to stretch our legs along the way. This time we stopped at a lakeside marina with a small park looking out over the water. It was beautiful. Blissful. Calming. Centering. I could go on… But what I loved most was the swings. One of my rules in life is to never pass up a chance to swing. Just don’t. Take a moment to fly through the air, feel the wind on your face, give in to a giggle and you won’t regret it. I promise!

Well folks, my face is still twitching away. However, thankfully we seem to have tracked the problem down. First my physical therapist drew attention to my nervous system, then my local MD traced it to an adverse medication reaction which was the root cause of the nervous system being in the state it’s in, and then finally an emergency phone consult with my LLMD who (I’m grateful) agreed with the theories and decided on a plan of action. I love it when my practioners all work together. This sense of synergy really benefits the patient!

So this week I’m working on getting these symptoms calmed down. I really couldn’t continue to function in the state I was/am in; it’s just too much. I felt that I was continuously holding back the floodgates. Any time I relax my muscles, especially those in my face, the spasms start. Every. Single. Time. I’m so tense right now it’s ridiculous.

When my muscles start going it starts in my eyes. They begin to flutter. Then my right eyebrow and surrounding muscles start. It moves next to my right eye, then down to my lips. Usually last to hit is my nose. It twitches back and forth and every time it does all I can think of is Bewitched!

Wouldn’t it be fantastic if I could make some magic happen in this scenario?

I’ve always wanted to be able to twitch my nose like Samantha and clean up a mess, or find a lost object. Maybe I’d magically fill my pill containers or change the flavor of my Mepron. The list of things a girl with Lyme could do if she could “twitch” her nose with magic is endless!

The mind boggles.

I could make the battery on my kindle last longer, bring something I’d forgotten in another room right to my lap, turn off the lights off when they trigger my headaches, make my favorite movie play on tv, have the dishes clean themselves, or simply just twitch up a cup of tea when I’m feeling like a cuppa.

Endless, the list is endless I tell you!

What would you do if you could magically “twitch” your nose Samantha style?

My mom and I were discussing this in the car today. Suddenly we realized… if I could “twitch”, then I could call up Dr. Bombay!

Remember how to do it? A witch simply had to call out:

“Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!”

And magically Dr. Bombay would appear in a cloud of smoke right then and there. He’d be dressed in an outrageous outfit and be understandably miffed from being dragged away from whatever it was he had been doing at the time – usually his nurse.

But then he’d pull out the professional stoppers and get right down to business. The quicker the better, so he could get back to that nurse.

He’d listen to the problem and pull out some magical, mysterious witchdoctor examination tool. Wasn’t there a keyboard he played that did something?

Before long he’d know exactly what the problem was and how to fix it! I think my chances to be cured would be much improved with Dr. Bombay! He’s got magic on his side. Centuries and centuries of wisdom. And a small flair for the dramatic.

I’d much rather have Dr. Bombay consult on my case than Dr. House (as much as I loved him) any day!

Only it was never really that simple… more often than not he required some hard to find ingredients to cure the illness. There was a sleazy witch apothecary who sold potions and ingredients. Or there was always the chance that somebody would need to go back to the 16th century or something in order to get an ingredient like the tail feather of a dodo bird.

Somebody would need to go off in search of the ingredients while the sick person waited at home, and hopefully didn’t get worse. Dr. Bombay would disappear, only to be called back when all the ingredients were gotten.

My mom has volunteered to go off on the quest in search of the hard to find, magical ingredients to cure me! She’s prepared to battle a dodo bird for it’s tail feather or blend into the king’s court in the 16th century.

What a mom!

Now I just need to get the ball rolling… next time the muscle spasms come on I’m hoping not just for a twitch, but I want a “twitch”.

And you better bet I’ll be thinking, “Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!” .

All my love,

molly

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 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

 

(via Shawna Lemay on Flickr)

 

I think those of us with invisible illnesses understand this quote more than the average person. We quite literally live it. Thank you, Plato :)

In other news – I’m off to my LLMD this afternoon. I’m crossing my fingers! It’ll be my first appointment since stopping all my pharmaceutical antibiotics last month. Many symptoms have lessoned, and a few old ones have resurfaced. I’m not sure what to think. I’m trying to go in with an open mind.

I’ll be back with an update soon!

Much love,

molly

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

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,

molly

Instead of a quote, I thought I’d post a photo of a quote tonight. I like to change it up :)

NellieBly

The other night I saw this in the book I was reading and I thought I’d share it.

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