“Not today. Tomorrow”, I tell myself.

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 :)

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

The Big Bad Word

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

*7 Months* {Give, or Take}

There’s so much to say that I hardly know where to start. It’s been weeks since I felt well enough to post, and as usual I missed it. It’s so incredibly frustrating for me when I sit down to write and not an un-jumbled thought comes into my mind. So bear with me here as I attempt to shed some light on the past few weeks!

 

First, I’m so excited to tell you that my eye specialist gave us some AWESOME news in the middle of last month! I know, shame on me for forgetting to mention it. If it’s any consolation it was mentioned in my Twitter stream. Anyway, my eyes are almost 100% better!! No more Optic Nerve inflammation or ICP for me! Turns out that taking me off both the Doxy and recently the Levaquin did the trick! My dosages of Diamox which I’ve been on for months to keep a handle on the side-affects of ICP and lessen the raised levels have been cut in half. I have a follow-up appointment with the doctor in a few weeks where if things are still looking up the Diamox will be cut out of my treatment regimen. If I could jump without getting too dizzy, I’d jump for joy!

 

My appointment with my LLMD was around the same time last month. I handed her a list of my worst symptoms, and we agreed that I’d been herxing since starting back on antibiotics roughly a month before. From my own observations since then, I herxed constantly for around 6 weeks. A few of my biggest complaints were horrible brain fog, fatigue, pain, nausea and uncontrollable sudden acne breakouts.

 

For the nausea she explained that it was most likely being caused by toxins in my stomach/gut and no medications she gave me would help to a great extent. Great. So she suggested trying Reed’s Ginger Brew, a ginger ale with up to 26 grams of ginger jam-packed into a bottle. It’s helping! It seems to calm my stomach, wish it would give me my appetite back too though.

 

My brain fog she chalked up to toxins as well. In her words, “we’re killing things up there!”. Lovely, no? The phrase Toxic Overload comes to my mind. The acne is being caused by toxins too, trying to get out of my body through the skin. She recommended trying some herbal tinctures that other patients of hers were showing great results with. Our hopes are that they’ll reduce the fogginess and confusion and curb the daily headaches that have come back full-force. I haven’t ordered them yet, but we’re looking into them. I, of course, would be willing to give them a shot. Once we do get them, I’ll post their names.

 

My parents and I are also looking into investing in getting me a co-infection panel from IGeneX. My LLMD has been hinting at it for months, but the cost has always been a deterrent. If we knew that the test would for sure give us results, then of course it would be a no-brainer. But as it is the tests can’t guaranty that every infection will be discovered. Many false negatives show up. It’s up to the doctor to interpret. We suspect that I have Bartonella, but Babesia is also a possibility. Of course, it would be much better if I didn’t have any co-infections! But if I have them, it’s best to know so we can progress with treatment for them. Our plans are to get the panel later this month since I have another appointment coming up next week, I believe.

 

I’ve had some new symptoms appear lately. One of the most interesting is knee pain, for the very first time in my life! Knee pain and Lyme are “tied together” by the traditional definition of Lyme Disease. So I’m not sure what to make of it. I’m also having a lot of chest pains, and abdominal pain. My foot pain comes and goes, after not being  a problem for months after Bartonella treatment. But most annoying and troublesome of all has been my growing food sensitivities.

 

I posted a few days ago that I had been “contaminated” after eating out. That means that gluten was somehow introduced into the dish, and my sensitive digestive tract didn’t like it one bit. I had a lovely gluten-free meal at Axel’s Bonfire last week with friends. I carefully questioned the waitress, and felt fine after eating it. Only to get slightly sick the next day. I didn’t know if it was from gluten contamination, the ice cream I’d eaten as desert, or from the MiraLAX I’d been taking for a week since finding out that my fiber supplement had gluten in. I voted MiraLAX and forgot about it. Then a few days later, after stopping the MiraLAX, I went out to eat for lunch with my mom. We carefully instructed the deli on how to prepare our salads, grabbed some ice tea, and a bag of potato chips each. A few hours later, we both knew we had a problem. By the time we had gotten home the pain was horrible. I spent a few hours in the bathroom that night and I’m still recovering. I feel so much better than that night, but I still get a stomach ache from eating just about anything at this point. Gluten-free or not, food has not been my friend lately.

 

Our best idea has been to get me tested for Celiac Disease. My mom was tested and was negative. But there’s still a possibility I have it. The trouble is, I’ve been almost completely gluten-free for months and to test for celiac you must be eating wheat products for at least a month beforehand. I’m not willing to do that at this point. It’s not worth it! So we’ll see what my LLMD has to say, but we desperately need some help with all these intolerances at my house now. Gluten, dairy, soy, eggs, and nuts if you count both my mom and I. Things are getting worse, what do we do? Between the nausea and the bloated discomfort I know is coming, eating is a challenge these days!

 

I’d like to end this post with something positive however. I’ve had a taste of normality folks, and it was beautiful. I’m not sure how I managed it, but last week I spent day, after day, with friends and family doing things I wouldn’t have been able to do only a week earlier. I had an absolute blast! It must have been 4 or 5 days in a row of eating out, playing in the park, movies, sleepovers, and shopping. My heart is brimming with enthusiasm over it. It’s all a blur in my mind, but the memories are sweet.

 

Peace and healing, molly

 

“The best thing about the future is that it comes one day at a time.” – Abraham Lincoln