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… aka the post that’s been building up in my mind for over a week. This blog means so much to me. It really does. It’s my outlet, my face to the world. I’ve struggled lately because as much as I love writing here, I feel as if it’s physically simply too much half of the time.

And here comes my venting session – Why does this, something I love, have to be getting harder as I’m supposed to be getting better? Why? Don’t misunderstand me. I do know why. I know that I’m still getting better; I’m just treating the harder to reach “bugs”. Each and every day I’m getting better. But I don’t want this disease to take anything more from me than it already has before I can get it into remission. Nothing more.

I’m scared that it will. New symptoms are appearing, and old ones are rearing their ugly heads yet again.

Writing didn’t used to be this hard. I mean, writer’s block is one thing but this is on another playing field altogether. Brain fog is intense, and it’s frustrating as hell. I know that I can pass my physics class. And yet, one day I get an F on a quiz. Great. I talk to the teacher, get some advice, and go take the quiz again. The exact same quiz. I got 100% on it. The only difference was the days I took it on, and the amount of actual mental clarity I had at the time. And I obviously didn’t actually remember any of the questions or their answers!

When I sit down to write a blog post I have to ask myself if what I want to say is worth it at the moment. Can that energy be used towards something else? Usually, the answer is yes. And that is so deeply saddening to me. Often, however I’m swayed by how I’m feeling. This is natural, of course. But when the disease I’m blogging about is stopping me from actually blogging, then that’s a problem. I don’t like this reality. I don’t want to accept it. I want to find a way around it because I want to be able to blog about whatever pops into my mind with no fear.

My joints ache so much now that typing is an issue, and writing by hand is only possible for short pockets of time. On the topic of joints, walking is an issue. My knees are locking almost every time I get up, or walk. I’m 17 and I feel as if I were 90. My memory is, at times, disturbing. A month or so ago I began to get sores on one of my fingers. Then the finger blistered. After a few days of wondering what had happened, I realized that I must have burned myself. But I have absolutely no recollection of doing that! About the same time, I was reading in bed and buckled in pain when I tucked my legs up. I threw off the blanket, only to see a bruise the size of a golf ball on my leg. By the next morning it was a nasty, black and blue tennis ball. Again, I have no memory of doing anything to my leg.

My mom has actually expressed concerns over my cooking alone. At first, I was angry. Shocked. Disbelieving. Then I slowly remembered how it must feel to watch this happening to someone you love. I’m still shocked, but I’m being careful in the kitchen. If I can’t chop something I don’t do it. If I can’t open something, I ask for help. If I’m shaking too much to get the bread out of the oven I ask someone else to do it. I can’t control when I’m going to forget about a pot on the stove, however. But, cooking is another outlet of mine. And I can’t give it up. That too is something I want to find a way to make work.

The other night my mom and I were watching So You Think You Can Dance. I love this show. It’s always slightly emotional for me, because I was a dancer for years (ballet, tap, and jazz). Seeing the dancing makes me itch to twirl across the room, or have the opportunity to express the very essence of a piece of music. Dance is so touching, and so powerful. It truly opens a person’s soul. But, the other night instead of being moved by the dance I was stunned by the dancers themselves.

After a week of grueling practices and performances before the judges, the girls decided to go swimming on their afternoon off. They were all smiles, jumping into the pool and laughing. They showed no ill effects. If didn’t already know it I never would have guessed what they had just been doing for hours on end. I can’t imagine not sleeping in that situation. I was so puzzled that I paused the show (I LOVE my DVR) and asked my mom, “So… normal people can do that?!?!?!”. Apparently they can. I would kill to have energy like that. I’ve decided that I want to be able to do that. I want to live like that.

I know that I may never have that life. I can barely imagine having that life. But, I also know that without a dream in mind, my motivation won’t be nearly as purposeful. I’m a dream-fueled person. I run off the fumes of inspiration and dreams. And I won’t let this disease take those away from me.

And, here concludes my venting session for the morning! Thank you, so much, for your support. It means the world to me. Look out for my next post – I have some great news, and some new treatment updates to share!

Peace and healing, molly

 

“Dreams are like the paints of a great artist. Your dreams are your paints, the world is your canvas. Believing, is the brush that converts your dreams into a masterpiece of reality.”

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School begins in a week. I checked, it’s the 8th. For weeks I’ve put off looking up which day it is that I start my senior year, hoping, and yes perhaps clinging to the idea that if I didn’t know the actual date my lingering last weeks of summer would last longer. If that piece of logic escapes you, please don’t ask me to explain further. I’ve often been told I have a very original sense of logic. I like it, it suits me just fine!

 

As I sit here writing this I’m up at my cabin for the last time this summer enjoying a relaxing weekend escape. My dad jokingly kicked my mom and I out of the house on Friday morning, taking the opportunity to work on a few projects around the house.  My brother’s wedding is sneaking up on us in a few short weeks and we’ve got plenty to do still! Obviously my mom and I had no arguments and gladly escaped! The weekend has been a wet one, with rain almost every day. Since rain = pain I’ve been a little uncomfortable, but it’s been nice all the same.

 

We didn’t arrive here until late Friday night, but luckily I’d packed enough gluten-free snacks for the car that we didn’t have to stop to eat on the way. We’ve gotten sick too many times trying to do that. We’re learning, slowly but surely. Then as we ate our small dinner that night we caught the amazing Packer’s pre-season game!! Yes, it was amazing. I screamed so much I was afraid I’d go hoarse. You’ve been warned – I am a Green Bay Packer fan, and I’m proud of it. And yes, I do live in Minnesota the new home of Brett Favre. But, I’m not going to go into that here – I really just enjoy watching the games, not talking about the politics.

 

Yesterday we spent the day inside, snug and cozy watching a few Alfred Hitchcock movies (my favorite!) and reading our books. What would a vacation be without some reading time? Then, a delicious dinner and we spent the evening listening to my cousin play at a local bar. That was so much fun! I love listening to him play, and it was fun to hear some new songs from him. I’m impressed with myself too though. The bar was loud, had ceiling fans, and cigarette smoke. All of which I have issues with! But last night, I had a great time and only had a few minutes where things seemed overwhelming. I spent much more time laughing, smiling, and clapping than I did thinking about how I was feeling. It was nice to get out, and let go for a night. Usually I’m very aware of how I’m feeling at any given moment. And it gets tiring, ironically enough.

 

Today I did feel a little worse for the wear, sleeping in late and waking up in pain. But today was an important day. Today was the day we decided that I would start the Cumanda tincture I’ve talked about. I’m not sure what to expect, a huge herx or nothing. Either way, I’m taking a super low dose of 1 drop twice daily to begin with. On Wednesday morning I’m going in to have my co-infection panel. We’re hoping that the Cumanda will help bring out a reaction in my immune system that will show up in the blood test.

 

I’m praying, for what I’m not exactly sure but I’m praying about it all the same.

 

It’s been a nice weekend, but it ends tomorrow morning. Back home and back to summer homework for me. I’m thankful we got the chance to make it up here once more though. I love it here. It’s very grounding for me. I seem to get lost in the time I spend here. It slips by so fast! And I’m glad I got the chance to spend some time with my great grandparents today too. One small hiccup- it was too cold to swim! This is August still, I should have been able to swim! But, no. The weather certainly didn’t cooperate.

 

Peace and healing, molly

 

“Love life, engage in it, give it all you’ve got. Love it with a passion, because life truly does give back, many times over, what you put into it.” ~ Maya Angelou

rain … Come again another day! Or, you know, not. That’s good too. My mom and I commiserated this morning over our rain/weather-induced pain. I just hurt. I ache. At times, I even throb. My head feels like it could pop right off at any moment from the pressure. My energy levels are spent. Today is one of those days that I was hoping to get a lot done, and I haven’t yet accepted the fact that most of it won’t happen. Instead I just want to make my new favorite popcorn {black pepper!} and curl up in a pile of blankets with my new DVD set of Hitchcock films. That sounds nice, doesn’t it? Days filled with dark, stormy, wet weather and high humidity levels are energy-sucking days. I don’t function well in weather like this. Yesterday I was surprised how “normal” I felt in spite of the tornado weather and unrelenting rain fall. Today, I’m taking the beating.

 

And do you know what the kicker to the rain is? The sound of the constant water falling to the street in sheets, hitting the windows, and over-flowing from the rain barrel outside the window is actually making me have to pee even more! Now not only is my inflamed gut pushing down on my poor bladder, but the rain is like a mental trigger each time I stop to enjoy the tranquility of the sounds! Let’s hope I don’t pee my pants from laughing at this little irony.

 

To fully distract myself I’ll move on to another subject. Yesterday I shamelessly dangled a hint of my good news in front of your eyes. For those, like me, who might need a reminder: I think that’s all I can update for now. I’ve got some friends waiting for me :)  I’ll finish it up soon, no worries! But I’ll give a hint: I’ve got great news from my eye specialist!

 

Are you ready? I won’t tease you anymore! I invite you to help me celebrate:

 

I’m absolutely ecstatic to announce that yesterday we found out that my eyes are 100% back to normal!!! No more hemorrhages, no more inflammation, no more anything! No more signs of any increased intracranial pressure whatsoever! My wait in the waiting room was longer than the time I spent in my appointment. It was in and out, quick and easy, painless and full of only good news! I would go to the doctor every day just to hear only news of good health. Wouldn’t you? It was a nice, refreshing change for me. And I’m relieved! After looking at my eyes yesterday my doctor said, “You really had me worried for a while there!”.

 

Saying that this is good news is an understatement. I’ve been through so much with this since February. I’m ready for this to be over. I’m ready to get back on track in treating my disease! After an ER visit, 3 eye doctors in addition to my LLMD, and MRI and a MRV, 3 spinal taps, and a visit to the Mayo Clinic I’m actually done! I can hardly believe it. All those months of pain, of confusion, of worry and test, after test are resolved. And to think it was all caused by just a month of Doxycycline in January and was exasperated by a rare side-affect of months of Levaquin. No one thought it could be the antibiotics because I had stopped the Doxy so long before my symptoms occurred and Levaquin wasn’t even considered to be the cause of the problem. No one expected that it would take me almost a full 7 months to fully recover if antibiotics were to blame. But, turns out they were and it did take me that long to come to the place where I’m at now.

 

I’m so incredibly thankful for all of those who helped me get through this! My parents and my family were amazing. They truly are the pillars of my support system, and my wonderful friends were there for me at every twist and turn down that long road. My doctors however, deserve so much credit. Without my LLMD’s attention to detail in this situation I could have undergone surgery for a shunt to release the pressure. Thank God I didn’t go down that route needlessly. And thank you to all of you who read this blog. Knowing that you were here and listening to me as I traversed this obstacle made all the difference.

 

I’m slowing dosing down on my Diamox, and in a month I’ll be completely off of it. I can’t wait! And in 2 months I’ll see my eye specialist again just to check on how my body is handing being off of the medication.

 

Peace and healing, molly

 

“If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.” ~ Rabbi Harold Kushner

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

Yes, yes I know. I’ve been slack in updating lately. I fully acknowledge it! The last few months have held so many ups and downs that I’m exhausted just trying to think about it. Trying being the key word there, as I’m already exhausted before even trying to think. Quite a conundrum, I’d say.

 

So, wow. Six months of treatment for my Lyme. I’m still trying to wrap my mind around it. The hardest aspect of this update is accepting that just a few months ago I hit the point where I felt as badly as I had last winter in November and December. That’s huge. I hadn’t felt like that in all of these months. And I hit this low while I was off my antibiotics. Am I really getting better yet? I don’t know. Right now, I don’t feel like I am. But I’m holding onto my favorite affirmation: Everything is getting better every day.

 

Today marks the end of my first week back on antibiotics after my Mayo experience. I’m still not feeling quite myself. I feel a disconnect between my mind and my body. My brain fog is insane right now. I can’t keep a thought in my mind. I’ve got a constant headache, and I’m so very tired. It feels as if it take a huge effort on my part to accomplish anything.

 

I have accomplished a lot lately, but perhaps I took too much on. Again, I don’t know.

 

My LLMD feels that being taken off the Levaquin is what finally brought my intracranial pressure down. She’s comfortable putting me back on her treatment plan, but we’re proceeding cautiously. I wish it could be more aggressive though. I want to see the end of the tunnel, not just know that it’s there. You know? So currently I’ve got a week on antibiotics and then a week off. I see her again on the 14th to check in and learn what will come next. She’s keeping an eye on my adrenal functions now too. I’ve begun taking a low dose of licorice extract each morning hoping to up my cortisol  levels. Their low functioning might be what causing some of my deep fatigue.

 

In the meantime, my eye specialist isn’t completely assured by Mayo’s findings. I go in to see her on the 15th, and will hopefully be able to start lowering my dose of medication controlling my spinal pressure. We’ve found that many of it’s side-affects are actually my Lyme symptoms. It would be nice to know which they’re being caused by!

 

I’m still enjoying the time at my cabin. It’s been so wonderful to be out of school and able to relax finally. At the same time, it’s been a bit overwhelming so far. The sound level is tough. Loud sounds cause my dizziness and nausea to increase. I’ve got super sensitive hearing as a symptom. Hopefully I’ll still be able to be myself and have some fun with my family this week!

 

Peace and healing, molly

I don’t know about anyone else, but I really, really needed a vacation. I was so looking forward to this week. Every year my mom’s family has a reunion of types at our lake property over the 4th of July. It’s one of my favorite times of the year, and one of my favorite holidays. And that’s because not only am I at my cabin, one of my favorite places on earth, but I’m with my family. Family is really important to me, and the 4th is one of the few times a year that I’m able to spend time with my extended relatives. So, with all that’s been going on recently I couldn’t wait until we got here.

 

me @ lake superiorMy mom and I left with my dog Wilson early Sunday morning. The drive was beautiful. For a change of pace we drove past Duluth, MN and along Lake Superior before we continued up into Northern WI. I’d never been to Duluth before, and I’d certainly never seen any of the Great Lakes. Which is almost a sin, since we live so close. It was absolutely heavenly. The lake was gorgeous. I love any body of water, but seeing that lake made me wish for an ocean.

 

The weather was a bit of a let-down; we had dressed for a warm, sunny, summer day but by the time we reached the lake it was chilly and clouded over. We enjoyed it anyway! The pier was insanely windy, and I got shivers from the cold water as the waves crashed over my feet in the sand. I was upbeat and ready for action, but halfway through the eight hour drive I lost energy. A slight pick-me-up surfaced however when we stopped at a road-side stand to buy a bucket of fresh picked strawberries! Three days and a pie later, and we’re still eating them. So delicious! It’s amazing what local, fresh strawberries taste like. They’re jam-packed with flavor. So we snacked on strawberries and I read aloud a Aaron Elkins mystery as my mom drove us through MI and down into WI again.Mom @ Lake Superior

 

We arrived just as the rain was beginning to sprinkle again, and we quickly unloaded all of our bags and boxes of gluten-free food for the week. The rain has since stopped, but there’s a chill in the still damp air. I’m hoping it’ll warm up tomorrow, or Thursday. I packed more swim suits than I did sweatshirts! Seriously, who would plan for this weather?

 

So since we can’t be outside we’ve made due inside. My biggest accomplishment? I made a gluten-free strawberry pie out of those delicious strawberries yesterday! I’ll post pictures and the recipe I used soon. And still on the list- another pie, although this one will be blueberry and I’m reading a wonderful book that’s been nearly impossible to put down. I knew I picked a good book to read up here! The rest of my family starts arriving tomorrow, Thursday and Friday. I’m looking forward to it.

 

More later. I know, I’m due to post an update soon. I haven’t forgotten!

Peace and healing, molly

 

“Find what brings you joy and go there.” – Jan Phillips

Here are the long-awaited photos and videos from my Charter School Essay Contest award ceremony a few weeks ago. Sorry it’s taken this long to post! So many things have come up, as I’m sure I’ve talked about in the meantime. I hope you enjoy seeing the photos. I had such a wonderful time. I’m so glad I was given the opportunity to be a part of it. I read my essay almost dead last. They started with the kindergarteners and ended with the 3rd place high school students. So I waited for over 2 hours in the sweltering heat on the steps of the MN state capitol listening to others read, seeing dance performances, hearing senate representatives, and even a guest author spoke who spoke to us. Like I said, it was just a great experience. My dad took video of my reading; you’re welcome to take a look if you so dare! Here’s the link: http://ntx.na3.acrobat.com/p24691029/

I’ll post an update about how my LP went and what will be happening next as soon as I can. Stay tooned!

Thanks for looking!

Peace and healing, molly

“Write to be understood, speak to be heard, read to grow…” ~ Lawrence Clark Powell

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