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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

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

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’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.

It’s so hard to gauge where I am in my healing process. And. it’s hard to admit that, too. I’m functioning… to a point. I’m not spending every waking hour on a couch anymore. But I’m not even close to feeling how I wish I were feeling. I like to think that I’m in touch with my body. I have an awareness that it’s taken me years to become comfortable with. Lately, I feel disconnected.

I’m not even sure I can put my finger on a the words to describe how I feel.

At my last LLMD appointment my doctor looked at me and asked me honestly what timeline I had in my mind for continuing treatment. I was quick to say that I didn’t have one. I know that I’ve got years, and years ahead of me before I’m where I need to get. I went untreated for sixteen years. I’d rather not disillusion myself about that.

After some discussion we decided to back down on my treatment. Again. It feels right to me, yet at the same time it’s so absolutely counter-intuitive. My first reaction is to treat the crap out of these infections. The harder and quicker we do that, the sooner my life will be in my own hands again. I’m doing my best to not disillusion myself here, either.

Sometimes it’s just time to walk away. Find the next window to climb through, since doors seem to be barred.

My LLMD uses both traditional antibiotics as well as herbals to treat Lyme. I’ve always used both in my own treatments. I felt that taking the middle road worked for me. It made sense.

Last month I stopped taking the herbal tinctures. I still have supplements galore, but the tinctures were too much for my poor body to handle along with the antibiotics. So for now I’m depending on my three antibiotics to do their job… and I’m doing the best I can to cope with the havoc I feel within me.

I’m having migraines again. They suddenly reared their ugly head last month after about 5 months without them. Needless to say, I was not happy to have them back. When I’m not having a migraine, I’ve got a headache. Always. I have had rashes appear overnight. My abdomen is swollen again. I ache. And I cannot for the life of me stop sweating. (Yes, I  know that’s gross. I also know many people reading this will understand.) Hot sweats, cold sweats – you name it. They won’t stop. It’s incredibly uncomfortable, let me tell you! I can be at home resting, out with friends, or just sleeping, and I’ll break out in a sweat. UGH. On top of that I still haven’t gotten rid of the shakes.

These things could point to toxicity and my body trying to detox it. Or, I could be having a herx. I’m really not sure! My LLMD was worried about neurotoxicity at my appointment. By no means am I an expert… but that just doesn’t sound promising…

My next appointment is in January. Actually, I think this is awesome. My appointment is on 1-11-11 at 11 o’clock. Totally by accident too!! We’ll see what happens then. In the meantime, I’m going to do all I can to help myself make it through the craziness that is the holidays.

Today was actually a great day! I took it easy because last night I went out. I’m SO proud of myself. I managed to take a shower, wash my hair, get dressed, make lunch/dinner, clean my room, and reacquaint myself with my make-up – all before I went out to surprise my brother for his birthday. My sister-in-law arranged for family to meet him at his favorite comedy club for a show, and he had no idea!! It was so much fun! I haven’t laughed that much in ages – and those that know me personally will vouch for the fact that I laugh a lot! I’d never been to a live comedy show, either. So it was exciting :)

I was worried that today I’d be paying for it, but I feel pretty good! I’ve got my normal headache, and I’m a bit dizzy when I stop and think about it. Oh, and those sweats haven’t disappeared. But I was expected much, much worse. YAY!

I woke up late this morning. The house was empty, and peaceful. My whole day was like that. I even felt a huge creative spark this afternoon. I sat down with my beads for hours. It felt so good! I think it had something to do with the fact that today I’m wearing my purple leggings… color always inspires me.

I’m hoping the rest of my week will continue to look up!

Peace and healing,

molly

 

"Strength does not come from physical capacity. It comes from an indomitable will." -Mahatma Gandhi

Toxins.

My LLMD brought up The Big Bad Word at my appointment this week. I hate the word toxins. Even more so do I hate the word toxic. I’m a visual person, and the word “toxic” brings with it only bad images.

I see hazmat suits and warning signs.

My LLMD appointment was on Tuesday. My LLMD is moving to a new building this month, and the next time I see her will be there. I can’t wait. For me, atmosphere means a lot. The clinic I have been seeing her at for months makes me ill. They have those lights that buzz, the nurses wear too much perfume, and the overall feeling of the place is sterile. It has nothing that stimulates healing for me. I really hope that the new office will be more suited for her; I really do. We patients deserve it.

My appointment can be summed up by the title of this post: The Big Bad Word.

I went in feeling that I was herxing. I know what this feeling is. My body is slowly becoming overwhelmed by toxins. The newest antibiotic trio has been working. But, is it too much? If you’ve been reading my blog for a while you’ll know that I’ve always been sensitive to treatments.

I feel as though I take two big steps forward in treatment. I make progress. I taste it. Then, my body forces me to back up again. I feel as though I’ve been in the same place for months. What has changed? Very little, actually. I had those great 3 weeks, and since then I’m back to where I was.

I’m frustrated.

My body is trying desperately to detox. I’m breaking out in whole-body sweats. My skin literally itches. My body is showing signs of trying to shed these toxins but it needs help. I left her office with the names of two new supplements to add to my regime which will aid in the detoxification. One I still need to order, and the other is in the mail already. I should be starting at least that one next week.

My antibiotic dosage has also been slightly reduced in order to help my body adjust. We’ll see if between these things I’ll see a difference. I hope so. Right now I’m living in a fog. My head feels as though it will explode at any moment, and my overall pain levels are increasing. My fatigue has struck again. What I laughingly refer to as my memory is becoming tiresome. I’m shaking like a leaf.

My daily functionality differs day by day.

Today I had plans to go shopping with my best friend. We ended up staying at my house, making popcorn, and watching Robin Hood: Men in Tights. All in all – it was a great day!! I’m grateful for it. I had so much fun. I laughed. I smiled. We talked. I loved this day. But our plans changed because suddenly this afternoon I was hit unexpectedly with a wall of fatigue.

I literally turned off my computer, the lights, and fell asleep on my couch for 20 minutes. I never take naps. When I do, I know it’s serious.

Maybe that’s why I enjoyed Robin Hood: Men in Tights so much today… humor to heal the herx? I’m willing to give that a try. Anyone ever tried detox by laughter?

Laughter heals – that much I know. But does it detox?

Well, it can’t hurt :)

 

Wishing you health & healing,

molly

 

“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

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