Breaking Up is Hard to Do

Over the holidays, I have strayed far, far away from my strict gluten- and dairy-free Lyme diet. As a result, my joints are extra inflamed and my poor lactose-intolerant stomach is an angry, unhappy mess. Okay, so maybe picking up a pint of Ben and Jerry's Phish Food yesterday wasn't the best idea I've had in a while.

Even harder for me than getting back on the gluten- and dairy-free diet, is putting an end to my raging sugar addiction that, try as I might, I haven't been able to kick. All day long my body screams for sugar (read: chocolate!) as loudly as an alcoholic fiends for another drink. I eat breakfast: I want chocolate. I eat lunch: I WANT CHOCOLATE. You get the picture. Did I mention I REALLY love sugar?!

The Lyme spirochetes that I've been working so hard to eradicate from my body love sugar; maybe even more than I do! They crave it, which in turn makes me crave it, and they thrive on it. It seems to be an aphrodisiac for them, because they eat it and . . . ahem . . . like to get busy making little spirochete juniors (well, technically they divide, but I'm sure you liked the first image better).

What my sugar addiction means for me in regards to my Lyme disease is that I can expect an increase in Lyme-related inflammation and a severely weakened immune system, which to my already incredibly over-taxed immune system is not a good thing! Rumor has it that people have been cured of Lyme disease by eliminating sugar from their diet. Shouldn't knowing that be enough of a kick in the butt for me to ditch this nasty sugar habit once and for all?

Now I've never been a fan of New Year's resolutions, because a change in calendar doesn't typically generate enough willpower to successfully kick a bad habit. But with The Cookie Holiday officially over, it's high time for me to come down off of my Christmas-induced sugar buzz (and if you want to get technical, my sugar buzz didn't exactly start this Christmas), so this year it looks like I will have a New Year's resolution, after all.

I am heartbroken to announce that I am now mailing this letter to my (starting-tomorrow) old flame, Sugar.

Dear Sugar,
We're just not good for each other. It's not you, it's me. I love you, but I'm not in love with you. I know this hurts, but it's over. I'm breaking up with you. For real this time. I will always love you!

Love,
Alyson

Happy Christmas

Socializing while in pain: it's about as successful as trying to mix oil and water. Last night, I bravely attempted to mix the two by venturing out to my first (and only) Christmas party of the year. I sat on the couch the whole time and certainly wasn't the life of the party, but I was proud, nonetheless, to have made it out of my house and to a "real" party for the first time since I got sick.

I felt very surreal sitting there on that velvety, blue couch. It reminded me of the first time I flew in an airplane. I remember feeling rather insignificant, floating above the tiny world. As I sat on the couch at the party, I felt as though I was floating above a different sort of world. I felt like a spectator as I watched the people carelessly milling about, talking and laughing and having a jolly ole time. I studied the people, looking for tiny signs of hidden illnesses and wondering if any of them were worrying about things like breaking their diet, taking medicine, and escalating pain levels.

I didn't attempt to strike up any conversations with anyone who didn't venture over to my couch, and I did notice a few people staring, wondering perhaps why the girl with the funny hat wasn't moving off of the couch or socializing much. As my mom would likely tell me, nobody probably noticed but me. Maybe they did; maybe they didn't. It really didn't matter to me though. I didn't go to be a dazzling conversationalist. I didn't go to drink and be merry, either. I went to see my dear friends and celebrate the holiday and the joy of life and, of course, to be entertained by those who overindulged in the eggnog. I achieved my peace and merriment from comforts of the couch. Happy Christmas to everybody, especially my Lyme friends on the couch this holiday.

To Alyson, From Lyme Disease

On Christmas day, there will be a special present under the tree just for me. It will be in a giant box with sparkly wrapping paper, and it will be decked out with oodles of colorful ribbons and bows. There will be a label that reads: To Alyson, From Lyme disease.

Okay, so maybe it won't happen exactly that way, but I will be receiving a very special present from Lyme disease on Christmas: starting on that glorious day, I get my first (planned) week off of antibiotics. Following with the special holiday theme, on New Year's Day I start back up on my two antibiotics and continue onward with the current treatment: three weeks on, one week off.

2010 has had its good moments, but let's just say I am more than excited to turn the calendar to 2011. I am very hopeful for what 2011 will bring. I understand it's likely to be another year full of the ups and downs of treatment, and various other unexpected surprises (Lymeprises?), but I am ready to fight like a champion. I am hopeful that I will be able to say that 2011 is the year that I beat Lyme Disease (much quicker than predicted, at that)! I am hopeful that 2011 will be an incredible year full of amazing breakthroughs in diagnosing, treating, and curing Lyme disease.

While I will not be sending out any thank you notes to Lyme disease this year for any of the many presents, er, Lymeprises it has given me, I'm still grateful for all the lessons I've learned because of it in 2010. I am hopeful that I will use the pain to become a better person in 2011.



(I got the lovely image at the top of the page here.)

Pea Soup

Over the past few days, I've been stuck in a brain fog as thick as pea soup. I have started several blog entries since my last one, but I can't seem to follow my train of thought long enough to finish any of them. Hopefully my brain power will be restored soon, and I can start pumping out blog entries left and right again (or at least finishing the ones I start!).

December 17th, 1990

I've never put this story into writing, but it's something I think about a lot. Today marks the 20th anniversary of a Christmas miracle.

Exactly twenty years ago to this day, my mom was driving me to my weekly dance class. Lost in lala land like a typical child, and likely thinking about the dream pony at the top of my Christmas list, I was suddenly jolted back to reality by my mother's screams. I looked up to see the most terrifying sight in my life: an 18 wheeler coming straight toward our vehicle.

In situations like that, it's really true what they say: my ten short years flashed before my eyes. It's odd how time works in moments like that: I literally had time to process and come to terms with what was happening in front of my eyes. Time stood still and I understood that my mother and I were about to die. Obviously, since I'm writing this story (and since I'm not a ghost!), you know that didn't happen. So let me back up a little bit.

We had just been getting on the interstate when the 18 wheeler, traveling in the opposite direction, came up over the hill too quickly, and in an effort to avoid hitting the car in front of it, swerved into the median. The truck driver lost control and then noticed us. I watched as the truck driver, in a futile but noble attempt to avoid colliding with us, tried to flip the truck over the hill. The cab rocked back and forth and then tipped over, causing the entire truck to crash to its side. It did not flip over the hill. Instead it began sliding toward us like that.

Because we weren't fully up to speed and because we were still on the entrance ramp, my mom put our vehicle in reverse, which is why we are both still alive. We still collided pretty hard, but the impact wasn't enough to kill us, as it surely would have, had she not thought so quickly on her toes!

My mother and I walked away that day (actually, I think we both ran in fear of our vehicle blowing up) from a car accident that should have claimed both of our lives. Not many people can say they walked away from an accident involving an 18 wheeler! To our family, it was nothing short of a Christmas miracle.

Woven into Memory

I've been doing a lot of thinking about how much Lyme Disease has affected every aspect of my life over the course of this crazy, turbulent year. Never in my wildest dreams could I ever have imagined the things I would go through in a single year: the pain, the tears, the love, the laughter, the joy, the growth. Every single feeling I have felt over this year has been amplified by the intensity of this illness.

I've had to reorganize my life in a way that is no longer recognizable as the life that I was living only a year ago. I've had to let go of many dreams. This beautiful quote by Helen Keller has been like a salve to my wounds this year: “When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.”

Make no mistake, there is much pain behind closing a door. But if you look closer, there is beauty. A door closed is not a door forgotten; for it is only when it is closed that it can become woven into a cherished memory. As I laid down to sleep last night, I was overcome by a flood of the most precious memories I have ever known, each one given to me like a gift during this painful year of my life. Each memory was like a beautiful pearl shining just for me at the bottom of a raging sea; each one, like a rainbow put in the sky just for me after a very powerful storm.

My Lyme Disease is not the IDSA Lyme Disease: Alyson

What do you do with your own personal story about your battle with chronic Lyme Disease after reading the article recently published by the Chicago Tribune, flatly denying the very existence of your illness? After all, the truth is right there in the article for all to see: chronic Lyme Disease doesn't exist.

Yet for some reason, more and more people just like me are falling ill from a complex form of Lyme Disease, complicated by multiple co-infections (also transmitted by tick bites), which not only cause their own set of symptoms, but can be just as debilitating and tricky to diagnose and treat as Lyme itself. Perhaps our cases don't become complex and difficult to treat until, like mine, they've been misdiagnosed for months or years, the very reason Lyme Disease becomes chronic: a topic, interestingly, left out of the Tribune's article.

For those of us attempting to speak up against a seemingly well-written article written by an influential source, who is left out there to hear our voices and our desperate pleas for more research on this disease? Honestly, who in their right mind wants to read long and drawn out stories about people enduring endless pain from a disease that is considered by most to be obscure?

According to the IDSA (Infectious Diseases Society of America) standards, I no longer have Lyme Disease. I've completed a short dose of antibiotics. I should be better. Case closed. But something is wrong with this picture: I'm still gravely ill. The problem is not whether or not chronic Lyme exists, but the lack of a clear-cut way to treat it. Unfortunately, the IDSA guidelines don't always work for the complex cases on the rise, cases that are often riddled with co-infections and years of misdiagnosis.

There are gaping holes in the research on Lyme Disease. The Chicago Tribune's article serves only to detract from the problem at hand: much is unknown about the complexities of Lyme Disease. How dangerously arrogant of the Tribune to assume that the Lyme puzzle has been solved, a chronic form doesn't exist, and wash their hands of the whole mess!


Sincerely,
Ticked Off by the Tribune



-You can read my explanation of what it feels like to have Lyme Disease here.
-I published my initial reaction to the Chicago Tribune Article here.



Read Other “My Lyme Disease is not the IDSA Lyme Disease” stories:
Alix’s letter- http://bit.ly/gJoITn
Andrew’s letter- http://bit.ly/efOBxw
Brooke’s letter- http://bit.ly/hweVql
Candice’s letter- http://bit.ly/i3FARF
Eric’s letter- http://bit.ly/ibWfPW
Heather’s letter- http://bit.ly/fAinvr
Kim C’s letter- http://bit.ly/g7MRT9
Kim T’s letter- http://bit.ly/fFVHmO
Molly’s letter- http://bit.ly/hoZaQU

My Two Cents

Yesterday, an article was put out by the Chicago Tribune about a very touchy subject: the decades-long war that has been waging over the existence of chronic Lyme Disease. If you haven't read the article, you can do so here. This is my response to the article:

Lyme Disease is riddled with politics. A fierce and ugly battle has been raging for years over the very existence of chronic Lyme Disease. Columbia University Medical Center's Lyme and Tick-Borne Diseases Research Center explains part of the Lyme controversy here.

While scientists, doctors, insurance companies, government agencies, and anyone else who can join in, are so busy fighting over every single aspect of the disease, the victims, those caught in the middle of the Lyme war, are left to gather dust in the corner. We are expected to wait and suffer quietly, while the never-ending debate rages on over how to handle us. In the meantime, our stories of endless pain and agony are being swept under the rug.

Having Lyme Disease makes me feel like a young child whose parents are on the verge of a nasty divorce. Both Mom and Dad are pulling my arms in different directions, because they both know what's best for me, but they can't seem to agree on the same thing. When it comes to Lyme Disease, everyone wants to be the parent, everyone knows best, and everyone wants to be right. "Chronic Lyme exists." "No it doesn't." "Yes it does." Sometimes, when there is such a fuss over whether or not someone is right, you forget what you're even fighting about. And if this battle goes on much longer, no one with Lyme Disease will have any arms left! It is time to take a breather, stop fighting, and do more research!

There is a gaping hole in the Tribune's story that really needs to be addressed. At the top of the article, there is a picture of a man who was misdiagnosed as having Lyme Disease, when in fact it turns out he has been suffering from cancer. It is, of course, a heartbreaking story, but we are not shown the other side of the story: those who have Lyme Disease, but have been misdiagnosed--the very REASON that Lyme Disease becomes chronic.

Most doctors do agree that when caught and treated early, Lyme Disease is pretty easy to cure. The problem lies in what to do with those of us, like me, who do have Lyme Disease, have already done our short course of antibiotics, and aren't cured. The tests show it's still in our bodies and our symptoms are still there. Our symptoms do not lie. Is a cancer patient abandoned if one round of chemo doesn't cure them?

According to a study published by the New England Journal of Medicine, "There is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo." The problem lies in a lack of effective treatment for the chronic form of Lyme Disease, not whether or not a chronic form of the disease actually exists.

There is so much that is unknown about Lyme Disease, especially those cases like mine that have gone misdiagnosed for months or years. The sad thing is, many people (doctors included) will read the Chicago Tribune's article, and believe every word of it, when in reality, scientists have only touched the tip of the iceberg in what is known about Lyme Disease.

I have enough pain in my body already from Lyme Disease without adding all of this controversy on top of it. To me, the answer is this: stop bashing each other and do more research!

Day Off

Today I took a sick day from being sick. I just needed a break, and so I ran away from home. Now, I didn't technically run anywhere, and I wasn't actually running away from home; I was running away from Lyme Disease. I didn't outrun it, of course, but I did manage to trick my brain into thinking I got a day off. I fled to a friend's couch, turned off my phone, and went back to sleep until 2:00 P.M. Now, I'm refreshed and ready to go back to work tomorrow making Lymenade again (as in: when life hands you Lymes, make Lymenade).

Headline News: Doozers Cure Woman of Lyme Disease

Today was my second day on doxycycline, my new antibiotic, which paired with my old antibiotic, azithromycin, is attempting to knock the socks off of my Lyme Disease! While I don't feel like I'm in the midst of a particularly big herx, I definitely have an increase in symptoms, especially joint pain, which has been relatively quiet lately.

The pain in my body feels like someone is taking a drill and boring slowly into my joints, especially my hip bones. But since my brain doesn't particularly like that visual, and because I have a very vivid imagination, my brain has compensated by replacing that image with one I like better: when I feel that boring ache deep in my bones, I now picture thousands of tiny Doozers, the little construction workers from Fraggle Rock, working hard in my body. The pain I feel is just the friendly Doozers, digging deep in my joints and partaking in a not-so-friendly game of peekaboo with the Lyme spirochetes.

Sorry!

Tomorrow I take my second dose of doxycycline. It has only been four months since I got my diagnosis of Lyme Disease, and I am frustratingly early into treatment. My body is insisting that we move even slower than normal, at a snail's pace.

I feel like one of the pawns in the board game Sorry!: every time I start moving forward, I get a "move four spaces backward" card. I'm trying hard to be patient; really I am. Each step I take is one step closer to where I need to be -- Lyme free! -- and one step farther away from where I started.

Good riddance, start line! Doxycyline and I are about to play a "move forward 12 spaces" card. Now if these damn spirochetes (the little buggers that are responsible for making me sick!) try to Sorry! me again, they're the ones that are going to be Sorry!

Three's Company

This morning, my gorgeous pink pill met her two hunky new boyfriends for the first time: The Yellow Fellows. I think they look great together, don't you? Rumor has it that two new hunks will be stopping by tonight for a late-night rendezvous!

Whatever Tomorrow May Bring

If you keep up with my blog, you may recall that one of my favorite quotes is this one by Emerson: "Write it on your heart that every day is the best day in the year." On my darkest days, usually when I'm in a great deal of pain, I strive to put Emerson's words of wisdom into practice. I hate to think about how much time I could easily waste away to the pain of Lyme Disease. As much as I want it to, time does not wait for me to feel better! In fact, like some kind of cruel cosmic joke, time seems to be moving at the speed of a freight train since I got sick, and my two children are sprouting quicker than ever. Pain or not, I don't want to miss a thing!

That being said, tomorrow is my big day: I start a new medicine, doxycycline. I will not lie-I'm terrified. I'm not ready for another big herx already. I don't know what tomorrow will bring. The hardest part is knowing that I have to get worse to get better. Until someone finds a better way (and whoever is working on that, PLEASE hurry!), that's just the way treatment of Lyme Disease goes.

My goal now is to cling to my favorite quote, both today as I'm scared of what's to come, and tomorrow as I'm overcome with a major increase in symptoms and slammed with pain. I will readjust my life again until I settle into a new "normal." I will strive to find laughter and joy every day, pain or not. I will find time to laugh with my children every day and I will not miss out on life while I wait for my health to return. I will hang on to the hope that doxycycline will carry me farther than azithromycin has and bring me closer to my goal of beating this awful disease.

Healthy or not, you never know what tomorrow may bring; neither are you promised a tomorrow. What will you do with your today?

What Color is Your Lyme Disease?

Yesterday was a classic example of an average day in Lymeland. I felt fantastic in the morning, but by evening I was a mess. With Lyme Disease, one minute you're up, the next minute you're down, waaaaaaaaaaay down.

A typical day with Lyme looks like this: People are calling and texting to high five you on your awesome morning (news travels fast!), but by then you're laying on the floor eerily resembling the old lady in the "Help, I've fallen and I can't get up!" commercials. You have no recollection of feeling well in the last 90 or so years (and you can only assume by the way you are feeling that you probably are around 90 years old). Next thing you know, the calls from worried friends and family come rolling in to tell you they're sorry you're feeling bad again. But you'll need to call them back, because now you're busy cleaning the bathroom. Huh?! Welcome to Lyme Disease. It's enough to make your head spin!

This disease would be easier if it came with its own special set of buttons to wear to explain to confused friends and family how to proceed: "Feelin' Bad, Keep Back 500 Feet!" "Need Words of Encouragement" "Need Chocolate!!" "Feelin' Fantastic!" "Clear the Bathroom!" etc. Or perhaps a color-coded system would work better. Brown means you are feeling bad; green means you are feeling good. Purple means you're pissed off; white means you're wiped out. You get the idea.

Unfortunately, as far as I know, such a system doesn't exist (artsy people, take note; those buttons sound awesome!). So, while saying "Hey, I heard you are feeling better!" is fine, a better way to find out what color your chameleon of a Lyme friend currently is, simply ask, "How are you feeling?"

We Lyme folks are very grateful for those of you who call to check in on us, and we don't mean to confuse the heck out of you, but this disease changes faster than lightning, and we can't even keep up with it!

PS I'm currently feeling sage for so-so.

Take This Disease and Shove It!

I just had a doctor's appointment. Sigh. I'm feeling so frustrated with all of this!

The medicine I'm on is helping me so much. If I could just stay on it for a long time, I would be very happy; maybe I could be well again, even (not really, but I can still say that can't I?). But I can't stay on it. By itself it is not an effective treatment for Lyme. It is a drug that is easy to build a resistance to. It can cause the remaining spirochetes to be badass sons of bitches that don't wanna die. It also could stop working for me at any given moment.

Because my body is so fragile, my doctor can't slam me with antibiotics like the normal treatment for Lyme Disease. Currently, I take azithromycin on Tuesdays, Thursdays, and Fridays. Now we're going to add in doxycycline.

I'm terrified. I was on azithromycin a few months ago and did so well on it until we added in bactrim, another antibiotic. Then I was so sick, I truly thought I might die. It's taken me a few months to recover and get back on my feet enough for my body to handle the azithromycin for a second go-round.

I feel like I've just gotten back on my feet again, and now I have to go back to that very dark and scary place again? Already?! Life just seems pretty unfair right now.

Road to Recovery

The Lyme Disease Road to Recovery is not a paved road. It is like driving down a bumpy country road full of ruts and potholes, in a rusty old pickup truck with bad shocks. Occasionally, there are some smooth spots in the road, but mostly it's pretty rough going.

This morning my body feels as though it's taken a detour off of the country road and is now happily cruising down a freshly paved interstate highway. Even my unreliable, rusty old pickup (aka my Lyme riddled body) can't rain on the parade of this smooth road! I feel normal, I feel healthy, I FEEL LIKE MYSELF AGAIN!!

Now, don't go getting too excited. I am nowhere near better, not even close. But my medicine is giving me a much needed taste of what's to come. And for right now, that's good enough to keep me going as long as it takes down this bumpy, unmarked Road to Recovery.