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

Finished.

Tomorrow is the big day. It’s the day I’ve worked to earn for the past four years, no matter how impossible it felt. Tomorrow I graduate from high school!

I could cry. I honestly, seriously, could cry. I was told two years ago that there was no possible way I would ever be able to catch myself up enough in order to graduate with my class. I wanted to prove to myself that even with my health in the state it was, I wasn’t going to let my life get pulled out from under me.

I needed to prove to myself I could do it. And, I have. I did it. I worked at home with tutors, through summers, and online in order to complete high school and still continue my treatment. I know my family and friends are incredibly proud of me. And I’m genuinely proud of myself.

I couldn’t tell you how I did it. I wish I had a secret to pass on to those others working though high school with chronic illnesses. The last two years are a blur. But tomorrow I’ll don a royal blue cap and gown and walk across that stage. I know I won’t have to remind myself to smile!

I’ll be back with a celebratory post as soon as I can.

Thank you for your continued support; it has meant so much!

 

Peace and healing to all!

molly

 

“Success means having the courage, the determination, and the will to become the person you believe you were meant to be”           – George Sheehan

It’s a Tilt & Topple world out there.

Oh, what would I do without you all? Between those who follow the blog, my best friends, and my amazing family I truly have a wonderful support system. All week I’ve been feeling the love. I can feel the prayers, and intentions. And they make me stronger. Knowing I’ve got so many on my side, cheering for me, and walking with me as I travel my journey is not only just strengthening, but so reassuring.

THANK YOU!

I love you all, more than I can say.

Now – I came to the conclusion years ago that my world was different that most. Some of you can (unfortunately) empathize with me when I say that mine is a Tilt & Topple world.

“Hi. My name is molly and I’m dizzy!”

At any moment I can lose my balance. The room can swim around me, or I can suddenly be swimming myself. Walls can become my best friend and ceiling fans my arch nemesis. I’m careful not to bend down too quickly. And, I’m always aware of how my weight is balanced. Stairs are sometimes a tricky feat but then again, so is walking in general.

I’ve gone through vestibular therapy and training – twice- and lived to tell about it.

Bright and early tomorrow morning is the dreaded tilt table test. Yes, I have little doubt that tomorrow my world will seem Tilt & Topple once again. Sigh. I can’t avoid the tilt. Let’s just hope I don’t topple!

I’ve promised myself that I won’t lie here – to myself or to you. So I fully admit that I’m nervous. So nervous. I know that I’ll be fine, but I remember the way I felt when we first began to suspect POTS and I don’t want to feel that way again.

Weak. Lightheaded. Confused. Helpless.

Not to mention the nausea. Oh goodness. I’ve been more nauseous than usual lately, and the more dizzy I become the more nauseous I get! (We stocked up on lemons – warm lemon water is a wonderful nausea reducer. FIY.)

I don’t even know what I want the results of this test to be. Do I want to have POTS? It would help explain a lot! I don’t want another diagnosis to deal with though. But what would it mean if the test result is negative? I just don’t know.

My motto is: When in doubt think positively and never lose hope.

Some changes are afoot…

First, please allow me to assure you that I am living, breathing, and alive! It’s been a tough few weeks, but I’ve missed you all. Let’s hope I can back into my blogging mentality again. I like it there.

I’m playing around on the site, and I think you’ll be seeing some changes in the next few weeks. Hopefully. So far I’ve changed up the theme {as you can see}. I love the fresh, Zen quality. I’m finding it calming. And, the blog needed a change. A facelift, shall we say. Do you like it?

And check out my new “about me”  section. I’ve updated my story since January. Hope you enjoy it!

I’ll be back later with a longer update. Tonight I’m hanging out with my friends, so I’m really looking forward to it. It’s been so long since I’ve seen them! It’s hard when I’m at home every day, and they have school and all the extracurricular sports and activities to be a part of. I love it when they make the time to fit me in!

Wishing an abundance of peace and healing for us all! – molly

 

“Be the change you want to see in the world.” ~ Mahatma Gandhi

{Come on, who doesn’t love this quote!?}

Rain, Rain, Go Away

… 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

It’s Raining, It’s Pouring…

Seems like a good time for an update! It’s absolutely pouring sheets outside and as I pondered the things I could be doing right now, watching the rain pour down on the street below from my picture window and writing up an update seemed high on my list. Higher than doing something about that pile of dishes in the kitchen, or attacking my chemistry homework, or even {gasp!”} reading. And, with this weather I’m sure you’ve guessed that my energy is in short supply today. Better safe than sorry. In truth, I’m saving my energy today because in a few hours I’m meeting up with a few of my best friends to spend some quality chilling out time before school begins again. Don’t even ask when school starts for me either, because I have no clue. I like it that way! Summer might, just might, last a few days longer.

 

I last wrote before going in for my monthly LLMD visit. At that point, and still, I was having horrible abdominal pains and was getting sick after eating anything, even gluten-free foods. Things have been a mess! So, she checked my spleen, making sure it wasn’t a problem there. And she came to the conclusion that I assumed she would – digestive issues, nothing more. Good news, and bad. I mean, a girl’s gotta eat! She explained it to me saying that my gut and intestines are so inflamed and swollen right now that anything will set them off. We need to get this straightened out! And when I said that I was having highly increased urination too, she said that she would expect that from my situation. Not only am I still on a diuretic medication but my inflamed gut is pressing down on my bladder making me have to pee almost on the hour! And come on, that’s just annoying.

 

So doctor’s orders: I’m now taking L-glutamine {an amino acid} before breakfast and dinner {1 gram daily}, and digestive enzymes with each meal. L- glutamine is used by some Celiacs to promote healing of the intestines and villi. And as for the digestive enzymes we actually found a brand that carries a special formulation for those can’t handle gluten. It helps ease discomfort when small amounts of hidden gluten are digested, and it too will promote healing in my inflamed abdomen. I’ve only been on these a few days, so we’ll see how they work out. I’m hoping they really will because at this point I’m still getting sick every time I eat.

 

In other LLMD news, I’ll be starting a few new herbal tinctures that have shown great success when treating Lyme. One, Cumanda is used to treat both Lyme and co-infections. So it’ll be a good fit for me, since my Bartonella treatment didn’t sit too well with my body. It’s an anti-bacterial/fungal/viral/parasitic and anti-inflammatory on top of it! The second is Pinella, is used to eliminate toxins from the brain and central nervous system. And, *BONUS* it treats brain fog!! YES! Please! I’ll even eat the cherry and get sick if I can have some mental clarity for school in September!

 

I’m also lined up to get my co-infection panel done in the coming weeks. Separate infections other than Lyme can be spread by ticks, and when a person is infected with more than Lyme alone it makes treatment more difficult. I’m being treated for suspected Bartonella, on the basis of several of my common symptoms and the rash that is telling of this particular infection. I have the rash on both hips, my chest, and formerly on my knees. But, I’ve never had a blood test for Bartonella. My LLMD also suspects that I could have other co-infections. If I do, or if I don’t, it’s just best to check and be sure. I’ll get the blood test 2 or 3 days after I start the Cumanda. That way we can stir up my immune system response a bit before testing.

 

The results are confusing though. I don’t want to have too much on my plate and be overwhelmed with yet another infection to treat. But, I also want to find any and all possible reasons for my being so sick and treat them! So I’m in some ways hoping for positive test results. There’s also the common false-negative to worry about. So if things come up positive, we know I’ve got it. If they all come up negative, there’s still that questions of doubt. Screwed up, right? I know. We desperately need more accurate tests.

 

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!

 

Peace and healing, molly

“The greatest healing therapy is friendship and love.” ~ Hubert H. Humphrey

*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