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

I can’t see through the blur

First off, did any other bloggers watch the new House episode about the compulsive blogger? Whew. I’m not going to lie – that just made me laugh! I’m happy to know that I’m not as obsessive about this as I could be. Not to say I don’t love you all, but I’m convinced my life must just not be as exciting as hers (thankfully)! I’m enjoying the relatively free schedule I’ve got before the storm of Spring of my senior year arrives with the melting of the snow. But, that’s another post altogether.  

I want to talk about the actual storm of the moment.

Today a friend asked me how I was. It’s a simple question. I get asked it all the time, and out of habit I always say “I’m good!”. Sometimes, I’ll give out an “Oh, I’m ok.” or a “Eh, I’ve been better.” I’ve learned to tell when people ask this seriously, and when they’re just asking to ask. Today, my friend was serious. They cared about the answer. They wanted to know, and I didn’t want to mislead.

I stalled for time. Putting off the inevitable, I guessed.

Finally my friend asked why I was avoiding the question. And at that moment it struck me that I had been avoiding answering the question because I simply didn’t know the answer. They were serious. I was too. I didn’t know how I was. I don’t know how I am.

I’m not good. But I’ve been so, so much worse.

I continued to give this some thought before I answered. I trusted my gut reaction, and blurted out that life felt like “a blur”. What a contradiction we live treating this disease. Our days feel long. Sometimes, the symptoms make it seem as if a day is an unending trap. But our lives are slipping away faster than we want to accept, at the same time.

These long, long days mixed with the time slipping through my fingers feels like a blur that I can’t see through.

I want a pause button. I don’t want to fast-forward, and I don’t want to rewind. The past is over and finished – it’s meant to be built upon and learned from, not relived. And the future is full of possibilities that I can’t even imagine yet. I want to live my future as it comes, not skipping ahead. But right now is going too fast. And too slow. I want to pause. I want to take a time out. I want to step out of life for a while and return in this exact moment, feeling more prepared to live it.

I didn’t know what to say to my friend. I explained the blur sensation, and remarked about the good mixing with the bad. And with some prodding, I thought about what it is that’s going on.

I’m reliving symptoms that I’ve been trying to escape for years. Not only that, but new ones are appearing. I can live with that. I can even accept it. But I don’t have to be happy about it. And, I’m not. I’m frustrated. I want this stage in my treatment to be finished. I’m ready to feel better now, please.

My doctor has me finishing up a last month of Mepron – the antibiotic from hell. Or, at least one of them. At my most recent appointment after being taken off this medication my doctor listened to me describe the herx reaction. It was… extreme. It was decided that my symptoms off of the Mepron are worse than the damage it is doing to me in the meantime. I’m still not sure how I’m supposed to take that! So here I am back on the Babesia kick meant to keep me from getting worse. In essence, I’m fighting to keep the small progress I’ve made.

And yet, I don’t feel better. I’m living with a constant headache. I’m dizzier than I have been in years. My joints are swollen and painful. My entire body aches. I have no appetite. I’ve got the sweats, and a near-constant temperature. The brain fog is intense. My memory loss is becoming frightening. And I’m not giving up.

I won’t let this disease win. This round isn’t over yet. 

I’m taking each day as it comes – the good with the bad. And I’m trying to make the most of the good. But I’d be lying if I said I’m ok. I’m not. I’m just trying to muddle through. Tonight I’m embracing my frustration.

Ask me if I’m ok tomorrow.

I may not have a pause button, but I’ve got my first acupuncture appointment of 2010 tomorrow morning. I’m so happy! I can’t wait for it. And I’ve had craniosacral therapy again twice this month already with another appointment this Friday. That’s almost as good as pausing, isn’t it?

May we all have better tomorrows, always. Each day we’re growing, changing, learning, and best of all, we’re healing. We’re fighting. Each day is bringing us closer to our hopes and dreams.

 

Yours in peace and healing, molly

Simple Things

I’m convinced that life’s pleasures are found in the simple things. A sunrise. A cup of tea. A fresh baked cookie. A hug. A letter in the mail. A new book. A favorite song.

I think you get the idea…

I’m going to (attempt) to begin a new series of posts where I’ll share some of the simple things that get me through my days.

I’ll give you a hint of today’s simple pleasure.

Can you guess?

 

cupcake cups, originally uploaded by maedchenmitherz.

 

Yes. I have one word for you: Cupcakes! This is no laughing matter. Cupcakes are to be taken very, very seriously. Got it? This is important stuff we’re dealing with here!

Or, you can be like me and throw caution to the wind as you dare to enter the world of refined sugar and gluten-free baked treats. Come join me!

I woke up this morning and stifled a groan. I don’t wake up well. At all. My joints feel stiff, my muscles ache, my head is heavy, my eyes are dry and I’m usually starving from not eating much for dinner the night before. I always hate the first steps out of bed that capture the Bartonella pains in the soles of my feet.

I staggered out to the kitchen this morning, and that’s all I remember. Next thing I know I’m cutting a grapefruit, making toast, and spilling peanut butter. Who knows how much time had passed, but I didn’t care. I was hungry for a change. And I was thinking. Today, I would make cupcakes. Yes, it sounded like a wonderful idea!

Lately, I’ve coped with my bad days by spending more time in the kitchen. Whole days have gone by that I’ve accomplished little more than having dinner ready, or planning a new meal, or researching a new ingredient. I can’t seem to sit still, or concentrate on anything.

But cooking makes me happy. I’m creating something with my own two hands to share. It fills a gap in my life that I’d forgotten about until recently. And, for now I can still measure, pour, mix, chop, simmer, and season. My mind can still comprehend recipe instructions. I just can’t always eat. I’m working on that one. Baby steps, baby steps.

So today I made cupcakes!

 

More simple things to come.

Happy cooking, molly

 

Life is really simple, but we insist on making it complicated.

- Confucius

A January Update (Yes, I know it’s February)

I’ve been working on this post for so long that I barely remember what it all was that I wanted to say. In fact, this post has been so long in the works that apparently I’ve got another appointment with my LLMD next week. That works out wonderfully since I’ve forgotten my last one! (Surprise, surprise.)

I do remember that last month I walked into the office in the midst of my abdominal troubles. Near constant pain, swelling, and complete loss of appetite. My doctor had me get an ultrasound for a suspected enlarged spleen. That ultrasound came back within normal limits. But I was still left with the pain, not to mention the swelling. There really wasn’t much we could do. I wrote about this extensively here.

I also had a blood draw that day to check on my liver panel. Being on the Mepron was worrying with the toxicity, and now those new symptoms. Last week I came home from the Senate hearing and found a message from my LLMD waiting for me. My liver panel numbers were significantly higher than my December results had been. At my January appointment we had decided to wait and see what another month on the Mepron would produce. My Babesia symptoms had flared, and not broken yet.

Instead, with these new liver panel numbers I was instructed to stop the Mepron until we could discuss the situation with my doctor in depth. So, I was on the yellow stuff one morning, and off that night. Just like that!

I think it shocked my system, frankly. Last week was one long herx. I barely made my school deadlines, and by the end of the week I had a migraine like I hadn’t had in months. I can only describe it as a headache so intense that it reminded me of the ICP episode of last year. I had a constant low-grade temperature, and an increase in brain fog.

But by Sunday morning I was feeling well enough to follow-through with my plans to volunteer at my old elementary school’s Mardi Gras, and then spend the afternoon with friends. It was a joy! And, I couldn’t believe my luck when I felt well enough the next day to spend another afternoon with friends! Things were looking up. The herx had lifted. Lifted, that is, all except for one symptom. I’ve still got the headache I got the day after I stopped the Mepron. It’s no longer a migraine, but it’s a headache. And it isn’t letting up.

As far as I can tell I’m still showing symptoms of Babesia. But, I’m waiting to hear my LLMD’s opinion next week.

I feel differently since stopping the Mepron, however. I don’t know how to describe it. A word isn’t coming to mind. I think my energy levels are a little higher, and my stomach has felt better since last week. My concentration level and cognitive functions are fleeting though.

Yesterday I couldn’t settle down to work on homework. Something just wouldn’t let me concentrate on what was in front of me. Instead I found myself making bread. Gluten-free bread. From scratch! I don’t even remember starting – I just recall being in the thick of measuring flours and smelling yeast. I made a big pot of quick lentil soup for dinner (I’ve been craving lentils like crazy!), and threw together a chocolate pudding to set overnight. I was a madwoman in the kitchen and I could barely stand by 7 o’clock.

I do feel that I’m not getting enough probiotics in my routine. And, adding more can only help my abdominal issues. I do take a supplemental probiotic, but I want to be adding additional foods to that. So – deep breath – starting this week I’m going to begin brewing kombucha (fermented tea) and give that a shot. I’m also very interested in water kefir as a dairy-free kefir option.

I had the opportunity to spend the afternoon today at the MN hearing for the house version of the Lyme protection bill, HF 2597. No vote yet. The bill was tabled.

More soon. I feel sleep coming, and not a moment too soon.

Peace and healing, molly

 

“So what do we do? Anything. Something. So long as we just don’t sit there. If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late.” – Lee Iacocca

All’s Well That Ends Well.

I survived! My friends, I tilted and jilted and never toppled! (Sorry, I couldn’t resist…)

The tilt table test was (mostly) all bark and no bite.

My results were negative and the doctor performing the test said my responses were normal! Imagine that, something normal? Needless to say I didn’t argue the fact. He was a slightly condescending doctor – I have a feeling he doesn’t often perform these tests on 17 year-olds. Just a hunch, considering he asked if a “young lady” my age was still in high school these days.

I was hooked up to more sensors and wires and I could count, and was given IV fluids throughout the test. The nurse was awesome. I had an IV in under 5 minutes! Seriously, can I take her home and keep her? And, moving on, I had blood pressure cuffs on both arms, a device reading my pulse hooked onto my wrist, and was strapped onto the special table. It was actually really cool to see how all of the things worked. The nurses were laughing at me at one point when I couldn’t help but exclaim – “Cool!”.

I make no excuses. I’m really very easily amused.

Throughout the test they had to keep adjusting the pulse device. I don’t think it was working properly. And the machine was taking my blood pressure constantly! Or, what felt like constantly. I’m sure I’m not the only one here who has had to bite their lip when the cuff is tightened too much. Ouch! I’m often painful to the touch. My arms, shoulders, and neck are a mess today. After 20 minutes or so, they stood me up. And – not much happened! I was a little dizzier, a little more nauseous, and slightly lightheaded but it wasn’t too far away from normal for me.

After a while they sprayed something (I’ve already forgotten what) under my tongue to make my heart speed up as if adrenaline was kicking in. That didn’t make too much of a difference. I felt horrible though. Suddenly I was weak in the knees. It was taking all I could manage to keep my knees from buckling. My eye lids were drooping. My head felt so foggy. It was bizarre. But, of course, I couldn’t think of how to explain any of this. All I could say was “I’m so tired.”. I think they assumed it was because it was so early in the morning.

Nope.

Soon they tilted me back down to a sitting position and that was when the fun began. They assumed that things would run it’s course now and nothing else would happen. Why am I always surprising doctors? As soon as I laid down and closed me eyes I was gone. I was suddenly so dizzy, and I said so. They rushed at the machines. It soon passed, but it wasn’t fun. I’m guessing that it had more to do with the fact that I closed my eyes after all the movement than with POTS though. Closing my eyes always makes me swim a little – and I’m always more dizzy. Oh well.

So, long story short, no POTS! We’re chalking all the excess symptoms up to Lyme, I guess. And I do have a vestibular disorder to boot. So it’s not really surprising. It’ll be interesting to hear what my doctor says next week. She’ll have the results herself by then.

I spent the rest of the afternoon watching movies, snacking on popcorn, and sipping tea with my mom. Nothing like Joan Crawford to distract a girl. And I’d forgotten how much I loved the movie “The Bone Collector”! Wow!

I was dizzy, nauseous, and lightheaded. But yesterday seemed to be a hotbed of other suspicious Lyme symptoms. I was also having some horrible abdominal pain. My entire abdomen is swollen and painful to the touch right now. Yuck. I wish my doctor appointment was sooner!

However, I think I’ve caught the worst of the recovery phase today. I’m not feeling well at all today. Sigh. At least I planned for this. I’m sad that I could anticipate this, but grateful that I’m able to know my body as well as I do.

Thank you, thank you for all of your prayers and thoughts this week!

Still feeling the love, molly

Be of good cheer. Do not think of today’s failures, but of the success that may come tomorrow. You have set yourselves a difficult task, but you will succeed if you persevere; and you will find a joy in overcoming obstacles. ~ Helen Keller

Too Tired to sleep. Oh, wait.

Every night for the past two weeks I’ve considered blogging. I wanted to. But the thought of it made me cringe. And I couldn’t figure out why! I think it’s because there’s so much that I haven’t written about. The month since my last doctor appointment alone feels like it’s been a lifetime. So, I’m just going to jump right in. I’m sure I’ll miss some things, but I think I’ll cover the most important. Or, at least I’ll get some things off my mind.

I go in next week for my monthly check-in, and I have until then to try to remember all that I need to talk about. The Babesia has hit me hard lately. I was sick over most of my Christmas break, unfortunately. I’ve herxed harder since October than I ever have. Hence, my disappearance from the blogosphere. On the day that I began taking the Mepron I was knocked for a loop by my 2nd dose. Yes, my 2nd dose. It was literally a matter of less than ten hours by the time my body was retaliating. I was shaking with a temperature of 102 by dinner, and didn’t get over the worst of it until two days later. Since then I haven’t gone more than a week without a herx reappearance – some lasting just day or two, and others lasting weeks.

I’m in a fog and lost in the symptoms. They keep piling up and I’m losing track! The temperatures have come back, and so has the stomach pains, shakiness, dizziness, breathing troubles, and my Bartonella rash. The latest culprits are nerve-related. Seemingly at random parts of my body will feel a chilling burning sensation. I know, that makes no sense.  But I don’t know how else to describe it! Other times it’s just a slow, steady warming that spreads. And, I haven’t had this much trouble breathing in years. That’s one of the only reasons I know for sure (other than the Mepron) that this is really being stirred up by the Babesia.

There’s more, I know it. But I think that those are the most relevant right now. Other than the brain fog which has reached astronomical levels.

I forgot to mention – most likely because I forgot until late last week that it was even happening – that I finally got scheduled for a tilt table test. We’ve been waiting for this since July or August. I think I’ve talked about it here before, but to remind those of us who have a failing memory the purpose of this particular test is to determine whether POTS is causing any of my issues. POTS stands for Postural Orthostatic Tachycardia Syndrome.

I’m not at all happy about the thought of this test. I’m so dizzy and nauseous already! Being strapped to a moving table isn’t going to help me any. I’m just hoping that it goes smoothly. So give me a thought on Thursday morning, please. I can use all the happy, healing, positive thoughts and prayers I can get!

Alright, I *might* be tired enough to sleep now. I think getting this all off my chest helped a bit :)

And a shout-out to a few of my friends for taking me out today! I had a blast. I always do when you guys give me the chance to feel normal for a while. Thank you!!

I’ll be back soon. Promise. I have school news to share.

G’night all. Sweet dreams!

molly

My glass is still half-full

Oh my. I may have escaped La La Land – for now. It was a tough day today. I felt a complete disconnect from my mind and my body. So strange, especially after having a great craniosacral appointment this afternoon. Anyhow, let’s hope this breakthrough can carry on until tomorrow! I could use a day with mental clarity. It helps to be able to think through the fogginess every few days. I was just given an extension on two of my hardest classes {I love my teachers, have I said that?}, but I still have a lot to do and I’m starting to falter. One step forward and two back.

Same old story.

But, I’ve realized I’ve had some improvements lately! Yes! I love sharing those. Remember I said in my last post that I had some treatment updates? If not, it’s ok, I had to go back and re-read my post before I did. But, I do!

First, I’ve finally been cleared to begin taking Nattokinase. You might have heard some chatter about this supplement before. I know I have. As far as my understanding goes, it will break up the fibrin clots in my body so that the antibiotics can get to the newly exposed bacteria.  Sounds good, right? This enzyme has also been talked about in conjunction with the Lyme “biofilm”. I’m not going to touch on this only because I haven’t done the research on it. I really know nothing about it. But, if it helps with that – awesome! No complaints here. My LLMD suggested Nattokinase as an option way back in March, or so, but we couldn’t order it right away. Turns out that by the time we had received it in the mail I was advised against taking it. That was during my ICP crisis, and they didn’t want to chance any bleeding into my eyes. Nattokinase does act as a blood thinner.

Secondly, I’m excited to be adding Turmeric to my daily arsenal of supplements. In very high doses, this herb has been found to reduce inflammation and pain in the body. I’m all for pain relief these days. My pain has been flaring up more than I expected this fall. It’s been bad. So I started 900 mg of Turmeric three times a day last week. By today I realized that my pain level was down to a 6 when I went into craniosacral this afternoon! {My pain levels have been around 8 & 9 consistently this fall}. Amazing! Let’s see if this is a good fit for me. I really, really hope so.

These pills are HORSE pills though. I mean it. I measured! It’s practically an inch long, no joke. I have photographic evidence! Sorry for the blurry cell phone picture, my camera died this afternoon. But look! Sad thing is that I don’t even feel it going down. 

 

And last but not least, another supplement has been added to my polka dotted bag o’ meds. I’m now taking 5-HTP each night to help me regulate my sleep cycle again. It has been shown to increase serotonin levels. Over the past few weeks my sleep has been fit-full. I would wake up exhausted and feel groggy for hours. I realized yesterday that it must be helping, because I’ve been so tired at night that I’ve been falling asleep before doing any reading. I never do that! I’m not only just falling asleep, but I’m staying asleep all night. A full night’s sleep – imagine! Oh it feels good.

I can’t wait to go back to my LLMD in a few weeks with all of these new realizations! Progress feels so good, even if I’m still pushing my way towards the end of a very, very long herx. I’m also waiting to hear what news my LLMD has brought back from the ILADS conference over last weekend. Hopefully some new ideas for my treatment plan.

I had a Lyme co-infection test near the end of the summer and it came back with slightly positive Babesia result. So my running infection tally is now Lyme, Bartonella, and Babesia. Bartonella and Babesia are common tick-borne infections often found aside Lyme disease.

So, some good news, some bad.

For now I’m still thinking of that glass as half full.

Peace and healing, molly