Friday, December 17, 2010

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.

Tuesday, December 14, 2010

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.



Sunday, December 12, 2010

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

Thursday, December 9, 2010

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!

Wednesday, December 8, 2010

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).

Tuesday, December 7, 2010

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.

Monday, December 6, 2010

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!

Saturday, December 4, 2010

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!

Friday, December 3, 2010

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?

Thursday, December 2, 2010

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.

Wednesday, December 1, 2010

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.

Tuesday, November 30, 2010

Burning Down the House



Dear Lord in Heaven, help me now: I'm attempting to cook! I'm home alone, we're out of leftovers, and I have nothing to eat for lunch.

Batteries in the smoke alarm? Check! As I flip on the local college radio station for some tunes to accompany my cooking, the song "Burning Down the House" by the Talking Heads comes roaring out of my radio! Hmm...that's not a good sign! But bad omen or not, my coconut and curry lentil soup is already underway and it's too late to turn back!

Trying-Not-to-Burn-Down-the-House, phase one: I've drawn a picture on each hand. On one hand is a picture of a big pot of soup. On the other, there is a picture of a house on fire. I am not taking any chances! I can't even make tea anymore without walking away, only to be jolted alarmingly back to reality by the angry screeches of my tea kettle. And in case I still walk away today and forget that I'm cooking (and fail to notice the pictures on my hands), this brings us to phase two: I'm wearing a bright blue polka-dotted apron. I might as well be wearing a blaze orange hunting jacket: even I can't miss me!

All jokes aside though, the memory problems bestowed upon sufferers of Lyme Disease are debilitating, to put it politely (email me for the less polite version!). Sometimes I feel like I have Alzheimer's Disease (scientists have actually found borrelia burgdorferi, Lyme Disease, in the brains of several Alzheimer's victims). I don't think I've ever heard anyone talk about just how crippling their memory problems from Lyme Disease are. I get lost. I forget what I'm doing. I forget what I'm saying. I forget people's names and faces. And other than today, I've totally given up cooking, because I just walk away from the stove or oven and I have no memory of the fact that I was cooking! I can't remember to return phone calls or send emails. I can't remember who is helping with childcare for the day. I can't remember numbers, months, years. I can't remember my own telephone number or my address. Sure, just like everyone else I've always been a little forgetful, but this is different.

Recently, I had a 15 minute conversation with someone who knew me very well, only I had no clue who she was. I knew I knew her, but I had no idea how. She knew the names of my children and my husband and I had no idea who she was. I realized after we parted ways who she was, but the damage was done. I think a little part of me died that day, and I realized just how bad things were being affected in my brain by this disease.

Lyme Disease is not considered to be a very serious disease. It is not taken seriously by many doctors and scientists who frankly don't give a hoot about a disease that makes people forget to call mom back on the telephone. I'm here to show you my side of the story: the good, the bad, and the ugly. The debilitating memory problems are only one of many symptoms I deal with on a daily basis, but they deserve their five minutes in the spotlight.

Now, I just looked down and saw a picture of a house going up in flames. Better go check on my soup before I forget again and that picture comes true!

Thursday, November 25, 2010

Magic Pill

I'm dreaming of what life would be like if there was a magic pill that would instantly cure Lyme Disease. No more herxing (this is what a herx is), no more being house-bound, no more 12 pills a day, no more doctor's visits every 5 minutes. NO MORE PAIN; no more long, lengthy, brutal recovery!

I would have my freedom back. I would drive again. I would cook and bake again and not have to worry about walking away and burning the house down! I would eat gluten and dairy again. I would watch my children all by myself and homeschool my son again. I would do lengthy photo shoots and I would take long walks with my dog. I would go to the playground with my kids. I would ride horses and OWN MY OWN HORSE AGAIN! I would go to massage therapy school. I would go hiking, camping, and backpacking (and not worry about ticks!).

I want these things and I want them NOW. I don't want to figure out who will help me with the kids this week. I don't want to think about the two doctor's appointments that I have to drag myself to this week. I just want my magic pill!

I have no choice but to wait. I picture the scientists busy in their labs, which in my mind happen to look exactly like Willy Wonka's Chocolate Factory. They are doing their best, these little Oompa Loompa-like scientists, working on my magic pill. Now when I picture it that way, it's just a little bit easier to wait. Maybe tomorrow will be the day...

Twenty Ten, What A Year You've Been!


What a year it has been! I was diagnosed with late-stage Lyme Disease. We moved from our wonderful little house with four acres in the country (the picture to the left is the view out my bedroom window), to a house in town with no yard, to be closer to family. I lost my beloved 30 year old horse to a blood clot, and had to come to terms with the fact that I'm too sick to get a new horse. I had to stop homeschooling my oldest child and put him in public school due to my dwindling health. Lyme Disease gave a whole new meaning to my job title of stay-at-home mom. I now had to accept someone into my home on a near daily basis to help care for my children and me.

Over the course of this year, my life has been turned upside-down and no longer resembles anything that looks even remotely like what it used to. I never could have dreamed up what my new life, my new world, my new normal would look like. Neither, though, could I ever have imagined the love that would come pouring in to me and my family through our struggles, and how that would give me the courage to make it through this incredibly trying year.

Though I sunk my heels in at the thought of leaving my beloved house in the country, I knew it was for the best. I knew how much we needed help. What I didn't expect was how much I'd grow to love our new house and neighbors who instantly surrounded us with love. Our neighbors have come to our rescue on multiple occasions: from prying open a stuck door with a crow-bar in order to reunite a very panicked me with my three year old (who was inside alone for nearly 30 minutes, while I was stuck outside), to delivering dinner, baked goods, etc. and picking up things from the store for us. Though I had to trade in the view of rolling pastures, I now relish in the fact that my new bedroom window faces the house of a wonderful new friend.

I couldn't have ever imagined the way I would grow in response to such an upheaval of my life. Let's put it this way, I'm about as open to change as a two year old! But, I've learned so much this year: how to be much more positive; how to find the good in a bad situation; how to be thankful when it feels like there's nothing left to be thankful for! I've even gotten a little better at not resisting change as much! Most importantly though, I've learned how incredibly strong I am. Amazingly, I have adapted well to my new life and my new concept of normal. Don't get me wrong, I have some pretty damn bad days. I miss my freedom and I miss being pain free. On my darkest days, I have clung to and tried to put into practice this quote from Ralph Waldo Emerson, "Write it on your heart that every day is the best day in the year."

What has truly kept me going on days that I want to give up, is the love of friends and family. If I dug my heels in about moving to a new house, I really dug my heels in about having to have constant help with taking care of the children, cooking, and cleaning: my job! But from the beginning, friends and family rushed in offering babysitting, homemade meals, trips to the store, help with doctor's visits, phone calls of encouragement, and on and on. Over the course of this year, with the help of family and some wonderful friends (both new and old), the physical pain of this year is dulled by memories of love and laughter.

When I look back over the year, it is no longer the bad days that stand out. What I remember most is the love of good friends and family determined to whisper strength back into my ear. Some give me belly laughs and some give me flowers. Some cook my favorite foods; others leave special packages on my porch (e.g., Namaste Gluten-Free Brownie mix!). Some have made me pictures and sung silly songs to me and sent me mail. Some give me massages. There are those who dance with me and those who cry with me. There are even those who carry me when I am too weak to walk.

This post is dedicated to my dear friends and family. You guys have kept me going and I love you dearly. The love you have shown me is what I will always remember most about this year.