Thursday, December 30, 2010

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!


Friday, December 24, 2010

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.

Wednesday, December 22, 2010

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.)

Tuesday, December 21, 2010

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!).

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!

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-
Andrew’s letter-
Brooke’s letter-
Candice’s letter-
Eric’s letter-
Heather’s letter-
Kim C’s letter-
Kim T’s letter-
Molly’s letter-

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


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.

Wednesday, November 24, 2010

Giving Thanks

Being thankful is an interesting concept when you are sick and life doesn't look the slightest bit like you thought it would. And isn't it appropriate how as soon as you sit down to write about gratitude, your two darling, angelic children start an every-man-for-himself, all-out screaming match two feet in front of you and your thankfulness? And how when you finally get them calmed down, your 7 year old tells you, "Mommy, I'm all wet!" And you notice that you, too, are all wet. And that's when you discover that your 3 year old has found a stray bottle of liquid laundry detergent and has now made a huge, gushing river straight through the middle of your playroom, engulfing all toys, books, etc. in it's path. And now, you and your grateful heart are covered in sticky, icky, stinky laundry detergent.

I am thankful for my two screaming, mess-making kids! I am thankful that I have ears to hear my children bickering (though some days I may beg to go deaf so I can get a hearing aid and TURN IT OFF). I am thankful for my hands, which daily wipe butts, sticky hands and faces, and clean up messes you can't even imagine! I am thankful for my voice, which has great practice yelling things like, "NOOOOOOO!" and "STOP!" and "Do you need a time-out?!"

I am most grateful for the ability to temporarily ignore the river, now oozing out of the playroom, long enough to sneak some chocolate and contemplate my thankful heart. I am deeply grateful for friends and family. I truly would not be here without them. Now if one of them would please come over and help me figure out how to clean up this mess, I would be eternally grateful!

Happy Thanksgiving!

Tuesday, November 23, 2010

Chronic Lyme Disease

The reason I chose to start this blog, making my life and struggles suddenly very public (sorry Mom!), is because I am appalled by the lack of awareness for Lyme Disease. If you know me, you know that I'm a very passionate person, and I've never been good at keeping quiet when I feel strongly about something.

There is a lot of controversy surrounding every aspect of Lyme Disease. By reading my story, you are hearing the voice of a person with Chronic Lyme Disease. Did you know that many doctors are trying to say that there is no such thing as Chronic Lyme Disease? We are being told that, other than a few very rare cases (which are supposedly very easily treatable), it doesn't exist. But as more and more people are not being properly diagnosed in the beginning stages when Lyme is easily treatable, more and more cases are becoming chronic and, thus, very difficult to treat.

Chronic Lyme Disease deserves more awareness, more research, more facts, more truth. Many doctors are turning their heads away from those of us suffering from Chronic Lyme Disease, slapping us in the faces by telling us that what we have doesn't even exist or is easily treatable. Doctors that are standing up for us, choosing to treat this disease in ways that they see fit, are losing their medical licenses. People are dying of Lyme Disease all over the country because they can't get the care they need. It is a very messy and political situation, and I don't have the time or strength to go more in detail. (I can point you here if you are the type who likes to do research; if nothing else, check out the many links at the bottom of the article citing numerous lab studies done on Chronic Lyme Disease; as a caveat, I haven't had the chance to check all of the links.)

Lyme Disease has asked, no demanded, that I pour every last drop of strength that I have into fighting for my life. My body is in a very, very fragile state right now. What little bit of energy I have left goes into fighting for validation of a disease that is not even considered by many doctors to exist. I have to fight for insurance coverage for more treatment of this "easily treatable" disease. I have to figure out what I will do if my doctor no longer has a job for being brave enough to treat my "easily treatable" disease.

Doctors say there's no reason to continue with antibiotics after a few weeks. They say there's no proof that it helps. Yet, here I am. I'm back on antibiotics again, and I feel like I'm slowly emerging from the pits of hell (also known as Chronic Lyme Disease). After being off of antibiotics for a few months, and thus almost totally housebound, I've been back on them for almost two weeks and I can now leave my house for short periods of time again. I'm still very weak and in a lot of pain, but it is a huge improvement.

There's nothing rare about what's happening to me. It is happening all over the country. Person after person after person, chronically ill from Lyme Disease, able to function again only after long-term antibiotics. We don't like this option either, but we deserve our lives back, and we deserve the chance to try this option that has helped so many other people with Lyme Disease. Doctors don't give a second thought to treating things like acne with long-term antibiotics, so given that we understand the risks involved, what makes Lyme so different? And where is the research to find a better treatment? While doctors are so busy butting heads over whether or not Chronic Lyme exists, is anyone left out there working on a cure for this disease?

Thank you to the brave doctors and scientists out there who are standing up and fighting for us, risking all you have. We can never thank you enough and we wouldn't be here without you!

Sunday, November 21, 2010

My Quilt

Last year I fell in love with a beautiful quilt in an antique store with a price tag of $250! My husband was not about to let me shell out that kind of money for a ratty old blanket (nor did we have that kind of money to shell out for a ratty old blanket!), so I got it into my stubborn head that I would just have to make my own.

Coincidentally, I had just seen a pattern for the same exact kind of quilt in a magazine that month. The quilt is called Grandmother's Flower Garden. It involves hand-stitching hundreds of tiny hexagons together, a daunting task even for an advanced quilter, let alone me, someone whose quilting skills involved sewing together several (uneven) squares and securing the layers together with yarn. But one look at that pricey quilt in the store and it was too late for me. I had never seen anything so beautiful and, in typical Alyson-fashion, I was head over heels in love before I even knew what hit me!

I knew that this quilt was going to take a very, very long time to finish, and that was okay with me from the get-go. I got it into my head that as long as I was done with it by the time my grandchildren were born, that was good enough for me! I still have a long way to go on the quilt (and my children are far from the age when I have to worry about grandchildren, so thankfully I still have plenty of time), but never in my life could I have anticipated just how much this quilt and I would go through together in the long journey to finish it.

I never planned it this way, but in the beginning, I would start rummaging through old clothes looking for a certain color to use for the quilt. Soon, one flower was made with my old maternity dress; another was made from my husband's old favorite pajama pants (with permission of course; they were ripped!); one of my kids' onsies, and so on. Then I started asking people for things to put into the quilt. Before I knew it, I had worked in things from my mom, my step-dad and countless other family members and friends, and my quilt was becoming very sentimental!

I started bringing my quilt with me everywhere I went. The flowers were small enough that I could take them anywhere to work on. I started dragging them around to people's houses, to my doctor's visits, etc. When I started the quilt, my youngest son was having a lot of health problems. He had to have some procedures done in the hospital, including surgery. I was a nervous wreck, but I poured it all into my quilt!

One day, I loaded up the quilt in the front seat of my car and set off to visit my best friend. I had been working on a very special piece and was excited to show it to her. I was making a flower in memory of my beloved grandfather, who had passed away a few years earlier. My grandma had given me fabric from his work shirt and his pajamas, and I was piecing it together with fabric from a good friend. It was raining that day, and despite the fact that I was driving extra slowly, I hydroplaned and flipped the car. I was terrified, but okay. I stood there looking at my upside-down car. I was so thankful that I was okay and that my kids weren't with me, but surely my beloved quilt was ruined!! My heart was broken. All that hard work, down the drain! All the love I had poured into my quilt, the hours, the sweat, the tears! I managed to blubber to someone who had stopped to help me that my very special quilt was in my car.

My mother-in-law picked me up and drove me home. A few hours later, there was a knock on the door. Unbeknownst to me, people had gone through my upside-down car, with glass everywhere, and managed to pick up every single tiny hexagon from the flower I had been working on. They brought me my quilt which, miraculously, other than a few tiny shards of glass, was absolutely fine! I have never in my life been so touched by the kindness of strangers!

Now my quilt and I are going through the hell of Lyme Disease together. As I sew one more tiny hexagon into my quilt, it represents one more piece of my life. My story, my journey, is decorated with the people I love, and reflected back to me in my quilt. I don't know how my story will end, or when my quilt will be done. I do know that one day, I will put in a hexagon and it will represent how I survived Lyme Disease, and how it almost took my life. I am a survivor and my quilt is a survivor. Now I must go, there is work to be done and hexagons to sew...

Having a Good Day

I went out with my husband for lunch and then even managed to get a little bit of Christmas shopping done. While I'm tempted to say that this is a "good" day, labeling it as so doesn't feel quite right.

It is hard not to define a "good" day as one in which I can physically do many things. There have been more than a few times when I've had one of those so-called good days, days when I could accomplish many things, followed by weeks of bad days, in which I could barely get out of bed. Does it really make sense to just throw all of those days away, writing them off as "bad" days?

How, then, would you define a good day for someone who is chronically ill? Low pain levels? A positive mental outlook? A day at home with a good friend? Whether you're sick or well, it is crucial to fill your life with the things that make you smile, especially on days you would be quick to label as "bad." It is important to find a way to make each day count, even on days when you can't get out of bed.

Some of my own personal things to do to turn a "blah" day into a more bearable day are: watching a funny movie, opening up the windows, Skyping with a friend, blogging, looking at the clouds, cuddling a purring cat, having a friend come over, sitting out in the sunshine, listening to my favorite music, looking at old pictures, texting, reading a good book, drinking a cup of tea, taking an aromatherapy bath, or working on my quilt.

When you are sick, the key to having a good day is to find ways to keep your mind busy. If you're just sitting there feeling sorry for yourself, you're going to go crazy quicker than you can say Lyme Disease! Something that helps me when I'm starting to go stir-crazy is to make silly to-do lists that look like this:

-take meds
-take bath
-eat chili
-call BFF
-work on quilt
-read book
-watch The Office

Checking things off the list makes me feel like I've accomplished things, even if technically I haven't left the house.

Whether you're sick or well, what does a "good" day look like to you? Is it defined by how busy you were? How many times you laughed during the day? Is it when you've actually had a break from your hectic schedule? Is it a day when everything went perfectly and nothing went wrong?

Thursday, November 18, 2010

Mornings in Lymeland

I have a new job. I am now a professional medicine taker. At first, I didn't want the job, but after a while I accepted the position, reminding myself I am only a temp. I was able to admit that maybe, just maybe, my body might appreciate a teeny, tiny bit of help with the whole healing process.

I spend a lot of time sorting out medicine and figuring out when to take what, and which things need to be taken on an empty stomach, and which ones are to be taken with food. It takes a long time to organize all the pills into my mammoth pill holder. I also have to make sure I'm not running low on anything and if so, figure out what needs to be called into the pharmacy, and what needs to be ordered online or bought at the local health food store. Sadly, I'm on salary, so I don't get paid overtime for all of that work.

I start my mornings with my favorite gluten free cereal (Koala Crisp; yum, yum!) and then begin chug-a-lugging down my daily concoctions. First I mix up my fiber drink, specially formulated to help my body absorb the high doses of probiotics that I take. Then I mix up my next drink, glutamine powder. I think it's supposed to make me buff. All 101lbs of me agrees that it's definitely worth the money! After that, I add 15-20 drops each (depending on my counting skills for the day) of three homeopathic remedies, happily into only one glass of water, to help my body detox. This is my favorite drink, because it's a lovely shade of pink. Its gorgeous coloring was responsible for the great I-almost-drank-watercolor-paint debacle. Then I squeeze the juice of one whole lemon into a giant Nalgene bottle and drink from that during the day, also to help with detoxing.

I take my asthma inhaler, then it's time to start swallowing pills. This is the fun part. Sometimes I try to break my own personal record for swallowing the most number of pills at once (FYI, my record is six). However, that doesn't always end well, but hey, I need a little adventure in my life! The number of pills I take varies greatly based on a number of different things (if you must know, money, my digestive tract, my current level of stubbornness, etc.). My morning number usually averages around 12 pills.

Then I'm done until midday and by this time, it's usually time for second breakfast, my favorite meal of the day! On a good day, this means chili! Now most people don't like chili for breakfast, but lucky for me, I get second breakfast and it's perfect for that!

I hope you enjoyed your morning in Lymeland with me.

*the picture above is not up to date on my current number of morning pills; it is now significantly higher

Tuesday, November 16, 2010

Hopeful Housewife

Today on this dreary November day, there was a beautiful rainbow in the sky, known to many as a symbol of hope. It seems fitting that on this day I would receive the ray of hope I've been needing for weeks.

"Kids, dinner!" Those words have come out of my mouth so many times without so much as a second thought. But tonight as I proudly shouted that phrase up the steps and the words came tumbling out of my mouth, I was floored by emotion. My kids came thundering down the stairs, blissfully oblivious of the momentous event that had just occurred.

It has been ages since those two simple words, "Kids, dinner!" have come out of my mouth. Yet there it was, undeniably: dinner on my table, and I put it there! My rainbow, my ray of hope after only 5 days of being back on antibiotics. It's too soon to tell if it's just one of the many highs in the never ending series of highs and lows that comes with Lyme Disease, or if the medicine is doing its job. After weeks of being mostly bedridden, it feels like nothing short of a miracle!

Monday, November 15, 2010

I Love You. No, I Hate You!

As a child, normal for me meant growing up with two deer heads mounted on the wall in the living room. If I sat in just the right spot on the couch, they would both stare blankly at me. Occasionally, I got in trouble for climbing on a chair and poking them in the eyes.

My mom never seemed to mind those two creepy deer heads occupying her living room. If she did mind, she did a pretty good job of keeping it to herself. She did, however, get her revenge on those two deer every Christmas by decorating them each with a big Christmas bow. There are several pictures of my brother and me throughout the years opening Christmas presents with the decked-out deer in the background, eerily watching the festivities.

Deer. They're everywhere (even in my living room). Everywhere I look, there they are. There was the time a deer hopped in front of our car, smashing into the radiator in a scene that could only be described out of a gruesome horror movie. Our car was totaled, the deer was totaled, but thankfully the humans, newborn baby included, were not injured.

There were many times growing up when my dad would spot a herd of deer on the side of the road, and we would pull over to watch in awe at the beautiful creatures. I was always mesmerized to catch a glimpse of them in nature. I was, after all, a child of the Bambi era. I never understood how my father, or anyone for that matter, would hurt a beautiful living thing. Of course, I had mixed feelings after taking a bite of a delicious burger, which I assumed was a regular burger, only to hear my dad asking me how my Bambi-burger was.

I suppose I've always had a bit of a love/hate relationship with deer. I loved seeing them in nature. I loved seeing the spotted baby deer playing with their mamas. I didn't, however, love dead deer mounted on the wall in my house. They are so beautiful (alive!), but on the other hand, they sure do taste good. Driving at dusk around here is like playing Russian Roulette. Everyone I know has either hit one (or more), or had some pretty close calls. And then, there's Lyme Disease. Right now, in my love/hate relationship with deer, I'm leaning much more toward the hate side. Why, here's a letter I wrote to a deer just today on Facebook:

Thank you for the Lyme Disease. Now I must eat you.


Sunday, November 14, 2010

Celery To the Rescue!

From deep in the trenches of a vicious Herx, this thought popped in my head: Sometimes, the cure is worse than the disease itself (please go here if you need an explanation of what a Herx is).

Healing from Lyme Disease is a brutal process. It's one of those the-only-way-out-is-through type of situations. As the latest round of antibiotics sets forth a mass murder on the spirochetal villains who have overtaken my body, I am feeling all of the symptoms I usually have, but it's as though someone has cranked them up a notch or a thousand! This is the hardest part of Lyme Disease. I will not lie to you, Herxing is barbaric! I've heard it likened to cancer treatment, where your body has to be poisoned with chemotherapy to get better. Since the Lyme spirochetes release a toxin into your body as they die, you actually are being poisoned.

Now is the time when I have to draw on every last ounce of strength I can find in my body to get through this. These are hard times, but I've found that the best medicine is laughter and, boy oh boy, am I laughing at myself right now! I long since gave up on pain medicine, because it doesn't touch the amount of pain I'm in, but what does help my pain is massage. A few days ago, I lost my favorite massage tool, a large plastic toy tooth that my son got at the dentist a few weeks ago, so I had to resort to the next best thing. I am now plowing right through this Herx and managing my pain levels by massaging my aching body with a large plastic stalk of celery! Take THAT, Lyme Disease! You are no match for my celery and me!

Saturday, November 13, 2010

New CDC Guidelines

The CDC recently changed their guidelines for diagnosing Lyme Disease. You must now have at LEAST 10 out of 12 of the following symptoms:

-you can identify all of the people on the Urgent Care billboard

-when you lose an item (book, shoe, etc.), the first place you look for it is in the fridge (and chances are good that it's there!)

-you attempt to drink your child's watercolor paint water because it looks exactly like one of your homeopathic remedies

-an epsom salt bath means the perfect opportunity for you to catch up on bills, texts, emails, writing your life story, etc.

-you eat more food than a teenage boy and a pregnant woman combined, and still have the physique of an Olsen twin

-you can call your doctor's office and leave the message, "Hey it's me; Call me back," and they do

-you take more pills a day than all of your grandparents combined

-you spend so much time in your bed that you've created a dent shaped exactly like you

-you get really excited when you break your personal record for giving the most vials of blood at your doctor's office

-you have a stockpile of household items next to your bed that you use daily for self-massage (and you NEVER leave your house without your wooden egg or miniature rolling pin!)

-you have way more experience doling out your medicine than a pharmacist

-your weight and your body temperature are easy to remember, because they are the same


Oh, those crazy spirochetes (the little spiral shaped organisms in the picture responsible for causing Lyme Disease)! They always want to have the last word. When you begin your attack on them with antibiotics and they begin dying off, they don't just die silently. Oh, no! They want to go out with a bang! So they release a toxin into your body that makes you sicker than you ever thought possible. This is called a Herxheimer reaction, or a Herx. Welcome, my friend, to hell on earth!

My doctor recently gave me the green light to start back up on Azithromycin. I never thought I would jump for joy at the thought of taking antibiotics again, but I am so happy to be back in treatment again! I felt so good on this medicine, and I'm very hopeful it will help me get back on my feet again. But with this good news comes the reality that Herxing makes me want to spin a cocoon around myself and not come out for a very long time.

Herxing typically lasts anywhere from a few days to a few weeks, while your body works extra hard to get rid of the sudden surge of toxins. My job is to help my body by doing everything under the sun to help flush out all of the extra toxins. I drink water with lemon in it. I take epsom salt and clove oil baths. I have a mini trampoline which I bounce on (VERY, very lightly), which helps the lymphatic system. I drink down homeopathic remedies and various other concoctions. I get weekly massages.

Since, unfortunately, I can't actually spin a cocoon around myself, I do what I now do best: burrow deep into my covers in the Alyson-shaped dent I've created in my bed, and wait for the Herx to end so that I can, hopefully, get some much needed relief from this medicine.

Monday, November 8, 2010

Caught in a Rip Current

Having Lyme Disease is like being caught in a rip current. I can see the shore; I can see my friends and family standing there waving to me, but no matter how hard I try to swim back to them, back to my old life, I'm just treading water.

In order to make it out of this rip current--my Lyme Disease--I have to be willing to swim parallel to the shore, not toward it. It doesn't seem logical. I can see my old life right in front of my eyes, and I want to swim as fast as I can straight toward it, but it is like a mirage. The more I grasp for a life I cannot have right now, the more it disappears. Peace and acceptance are hard to come by, but I am slowly learning their ways.

In order to have the things I want most in my life right now, I have to give them up. Not forever, but for now, because my body simply needs rest.

It seems odd that being static can make you grow the most. Like a person thrashing to get out of a rip current, my instinct is to run straight back to where I was before I got sick. I want to be the person I used to be, and do the things I used to do again. But I can't. I can't run toward that, because I am on a different journey. Physically, I am weaker than I have ever been in my life. Mentally, I am stronger than I've ever been in my life. So, I'm learning to stop thrashing and step out of the way so my body can do its job.

Saturday, November 6, 2010

Happy Balloon

This is my happy balloon. It used to be happier a few months ago. Now it is droopy and anything but happy looking!
Yet, for reasons I can't explain, I don't have the heart to throw it away.

Today my three year old asked me, "Mommy, is your happy balloon happy?" I replied, "No, I don't think it's very happy anymore." To which he answered sagely, "But Mommy, he's still smiling!"

I thought about this. Oh, my smart child! My happy balloon is miserable and sorry looking, but it is still smiling! Sometimes all you need is a different perspective.

With late stage Lyme Disease, there are a lot of bumps in the road. I have a long journey ahead of me. My body has been sick for so long that if the treatment doesn't go at a snail's pace, my body can't handle it. But, like my pal happy balloon, I may look and feel miserable and droopy, but no one can wipe the silly smile off of my face! Thank you happy balloon for sending me your silly, happy, get well soon vibes.

Friday, November 5, 2010

What About Lyme Disease?

I am one of the many people who have been tossed around in a sea of doctors, because I have Lyme Disease. As a child, I had my fair share of tick bites, but I never developed a classic erythema migrans, the bullseye rash associated with Lyme Disease.

However, there were signs at an early age that something was terribly wrong. Over the years, I developed crippling knee pain for no apparent reason. I developed acid reflux and had to sleep with a wedge under my bed. I had debilitating learning problems and struggled to keep my head above water in school. I developed asthma. Depression, anxiety and panic attacks became the new norm. I lost my short term memory. I developed restless leg syndrome. My thyroid was out of whack. My body constantly ached all over. More and more symptoms kept popping up. As a teenager at the doctor's office, I remember noticing that my chart was thicker than the 70+ year old man whose name was called at the same time as mine.

I live in a state that is not considered a risk for Lyme Disease. Yet, the closest neighboring state, a mere 20 minutes away from where I grew up, now has the highest number of cases of Lyme Disease. The fact that most doctors believe that it doesn't exist in my state (or yours, for that matter) is the reason I am now too sick to leave my house or take care of my children. Many more people will suffer because "Lyme Disease doesn't exist here."

Everyone knows about cancer. People know the facts about AIDS. But what about Lyme Disease? When caught early enough, Lyme Disease can most often be cured. But people like me who've been sick for years often end up with permanent damage. Lyme Disease is spreading at a staggering rate. Will you or your loved ones be next? Fall is a peak time for tick bites. Please take a few minutes to learn the facts about Lyme Disease:

Wednesday, November 3, 2010

A Girl Without A Pony Is Like A Tick Without Borrelia Burgdorferi

All of my life, horses have been magical to me. At a very young age, I started begging my parents for a pony. Sadly, sticking a pony in our tiny backyard (within the city limits) wasn't doable, or legal for that matter, but my poor broken heart couldn't fathom why my parents would choose to torture me by denying me my heart's desire of having my very own pony.

When I was in my mid-twenties, I finally got my foot in the door (er, gate) to the world of horses. I convinced my husband to let me take (very expensive!) riding lessons. Once a week, for one hour, my lifelong dream of being atop a real live horse came true!

I quickly noticed that something peculiar would happen when I was on the horses. When I was riding, if I was sick, my symptoms would disappear. But the second I would step back onto the ground, whatever symptoms I had would come back. For instance, if I had a headache it would be gone while I rode, but when my boots swung out of the stirrups and I landed back on the ground, my headache would be instantly back.

This happened to me many times. Be it a cold, asthma, anxiety, you name it and it would disappear. These magical ponies that I dreamed of all of my life were performing their own magic trick for me. In return, I did the one thing I could think of to thank them: I paid them back in peppermints.

On a cold and rainy winter day, my lifelong dream came true, and I got my very own dream pony. I loved my dear Shiloh for 5 wonderful years before she passed away at the ripe old age of 30. She carried me through so many things: my spouse in law school, the birth of my second child (okay, so she didn't actually CARRY me through that!), depression, anxiety, etc. Just like the horses I took riding lessons on, my problems melted away atop my swaybacked Appaloosa.

I have been well enough to ride horses only a handful of times since I got sick, but something about the magic of the horses shifted since I developed Lyme Disease. They were no longer able to carry me away from my pain. My joints still ached. My anxiety was still there. I was still depressed about being chronically ill. After years of horses taking my pain away from me, what was going on?

With this illness, I have had to tap into incredible amounts of strength deep inside of me to make it through my pain. Maybe the horses began to sense a change in me. Inside, I am so much stronger now than I ever was when I was "healthy." I am a much more positive person. I try not to take life for granted so much. I think the horses understood that I was finally ready to carry myself, ironically at a time when I could barely walk on my own two feet.

The reality of my illness is that I am not able to take care of another horse anytime soon. But the dream of one day owning my own horse once again carries me through my hard times. I KNOW I will be well again. I will fight with every last ounce I have to accomplish this dream. And this time, I will be stronger. I will not need my horse to carry me away from anything. We will ride off on our new adventure, girl and horse.

I am fighting for you, Dream Pony!

PS I will still be putting "a pony" on my Christmas list this year, just in case...

Tuesday, November 2, 2010

Lyme Disease or Pajama Party? You Be the Judge!

Lyme Disease may not be a walk in the park. However, if you look very carefully (and some days you have to look VERY carefully), there are actually a few perks of having my body invaded by a boatload of bizarre creatures known as spirochetes. For example, due to the fact that I have crippling memory loss, you can tell me your good news over and over again, and I will get just as excited for you each time you tell me! My friends love testing this theory on me. Go ahead, try it!

Another perk of Lyme Disease for me is that, since I'm on a dreadfully restricted diet (gluten free and dairy free), I get to eat like a teenage boy in order to keep my weight up. I have breakfast, second breakfast, lunch, second lunch, you get the picture! Hands down, second breakfast is my favorite meal of the day. And thanks to Lyme Disease, I still get to keep my svelte figure!

One more bonus of Borrelia Burgdorferi (aka my old pal, Lyme Disease) is that since I got sick, I got a written prescription to have a pajama party all day long, every day! I have quite the extensive collection of pj's. I have pajamas with Santas, apples, gnomes, Christmas trees, pumpkins, etc. Some people take great pride in picking out their outfit for the day (yawn!); I get to choose from a pile of fun and happy pajamas. Who says Lyme Disease doesn't have it's benefits?!

Sunday, October 31, 2010

The Carousel Disease

If you've ever spent any time around someone with Lyme Disease, you are probably pretty baffled. How is it that one minute they can be too sick to walk, and the next minute they are running around like a wild person, full of energy? One minute, they need to be carried up the steps, and the next minute, they are bouncing down the steps to answer the door. One day they can make a four-course meal, and the next day, they walk away from the stove until the smoke alarm goes off, reminding them that they were actually in the middle of making dinner!

Migrating symptoms are a hallmark of Lyme Disease. Sometimes I refer to it as the Carousel Disease, because my days are constantly up and down. No one has been able to explain to me what causes these ever-changing symptoms, but it is one of the most frustrating parts of the disease. People who don't understand Lyme Disease assume you are faking your illness. It's very hard for people to understand why I have days when I can actually ride a horse, and other days when I have to be carried from my bed to the bathroom.

You may look at me, and I may not look the slightest bit sick to you. But inside my body, there is so much going on that you can't see! So for those of you who are ready, hop on the carousel of Lyme Disease for a spin with me!

Imagine someone has strapped lead weights on your legs. Now your legs are heavy, achy, and hard to move. Getting around is quite a chore, but you can do it!

Now, imagine your brain is filled with cotton (hard to picture, but bear with me!). The simplest of decisions are now a major struggle for you, and you can't remember what you were saying or thinking. You can no longer answer a simple question like "should I have a snack?" You can no longer figure out simple math questions like 12-5. You constantly forget to eat your snack, and drink the tea you just made. You forget simple words. You haven't the faintest idea of what you did this morning, let alone yesterday!

Now picture someone taking a drill and boring into your hips, causing a deep, slow ache. It hurts when you walk, it hurts when you sit, it hurts when you lay down. Your fingers feel like someone is stabbing them with needles. Your knees feel like someone is banging on them with a hammer.

Mentally, you are very agitated, like someone is scraping their fingers down a chalkboard close to your ears. You head is throbbing, you are tense, and you feel as though you are ready to blow at any moment!

And just as suddenly as you hopped on the carousel, you hop off. The ride is over. Your head stopped throbbing. Your hips are only a dull ache now, not nearly as intense. You can walk easier now, but all that riding on the carousel has left you a little dizzy. Whoever was scraping their fingers down the chalkboard has stopped, and now you're only mildly agitated. You don't feel like there are lead weights on your legs anymore, but you are left with a flu-like ache in your body. You suddenly remember a million things that you were supposed to do. Like a kitten running through the house, you dart around trying to make up for lost time, all the while wondering when the carousel ride is going to start back up. It might be soon. It might not be until tomorrow. You don't know what the ride will be like next time or how long it will last. But for now, you are happy that your quarter ran out, and the ride is over.

Friday, October 29, 2010

Up To Speed

I got my official Lyme Disease diagnosis and began treatment in late July of this year. Currently though, I'm off treatment, because my body is too sick to handle the unkind effects of being slammed by high doses of antibiotics.

All that starting and stopping the medicines (three times to be exact) means the Lyme is having a heyday in my body. This is the sickest I've been yet and I'm unable to stray far from my bed. I haven't been able to leave the house this week except to go to the doctor's office.

The goal for now is to build my body back up with supplements until I am strong enough to try again with the antibiotics.

Recovery from Lyme Disease is painfully slow and, well, just PAINFUL! I'm doing my best to remain optimistic, though. My body screams in agony when I go far from my bed. So for now, I take joy in the fact that my daily to-do list looks like this: curl up under piles of blankets, read my favorite books, watch cheesy movies, and take three baths a day. If I think about it like that, it's not so bad!

My Lyme Disease Story

My journey with Lyme Disease

In October of 2009, I started developing mysterious symptoms. First came odd visual problems and trouble reading. It felt like there was constantly a fog on my glasses that I couldn't seem to wipe off. This persisted off and on for several months and I began getting headaches.

In late January of this year, I developed a sinus infection that wouldn't go away. I went to the doctor and got put on antibiotics. That's when all hell broke loose!

I became totally bedridden for months. The doctor said I had mono, but it quickly became apparent to me that something else was going on. I developed HORRIBLE burning and stabbing muscle pain that started in my ankles and over the weeks worked its way up my legs (there are just no words to describe the amount of pain I was in at that point!!). I started getting really nervous, thinking that whatever it was, was making its way up my body and about to attack my organs next! I was having panic attacks left and right. My pain was so bad, I literally wanted to die.

My doctor gave me Darvocet, but it didn't touch the amount of pain I was in. I called his office on numerous occasions crying and begging for something to help me with my pain. I have an INCREDIBLY high tolerance to pain, but I was crawling across the ceiling in agony! He said to try Aleve for the pain. Darvocet didn't touch my pain, and this doctor thought Aleve would help?!

He did do something that helped, though. He put me on two antidepressants, Zoloft and Trazadone. He said that Trazadone is used for chronic pain, and when used together with Zoloft, they start working in a week or two (instead of a month or two). It did help, and since I've been on it, I no longer get the terrible shooting pains up and down my legs that were unbearable.

I kept developing more and more symptoms, but my tests kept coming back normal. I switched doctors so many times, desperate for help, but no one seemed to believe that there was anything wrong. I kept hearing that it was all in my head and that I should see a psychiatrist. I couldn't take care of my kids anymore. I could barely walk and many times I had to be carried up the steps. I developed joint pain and arthritis in my hands. And then there was the pain. Undescribable pain!

At one point, I was sent to a rheumatologist, who upon examining my fingers which were starting to curve and bend from arthritis and were too swollen for me to wear my wedding ring told me, "Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done.

I knew someone with Lyme Disease, and some of her symptoms were very similar to mine, so I started researching it and I realized that I had an incredible number of symptoms. I found a great doctor, known among Lyme patients as an LLMD (Lyme literate doctor). My test came back highly positive for Lyme Disease.

I've had symptoms of Lyme for years, and misdiagnosis after misdiagnosis. Lyme is so hard to diagnose because the symptoms are ever-changing. What hurts one day doesn't necessarily hurt the next day. Also, no two cases of Lyme Disease are the same. You can get any and all combination of symptoms.

I started long-term antibiotic treatment in August. I don't know how long it will take before I am well again. For some people, particularly those who've been shuffled from doctor to doctor before getting the correct diagnosis, it can take many years. I have good days and bad days. I am very limited in what I can do, and I am in a lot of pain on a daily basis.

I don't want people to think I'm writing this for sympathy or pity. I write it because people don't know the facts about Lyme Disease. Did you know that fewer than 50% of people ever recall a tick bite? Fewer than 50% get the telltale bull's-eye rash associated with Lyme Disease. Did you know that a tick can be the size of the period at the end of this sentence? If you went to your doctor and asked to be tested for Lyme Disease, most likely you would be told that Lyme Disease doesn't exist here. I am living proof that this isn't true!

I hope my story inspires you to take the time to learn the facts about Lyme Disease. It is supposedly "rare" in my area. But I'll let you in on a secret: I'm not the only one here with Lyme Disease! Not even close. There are lots of us, here, there, and everywhere!

For a list of symptoms, please visit this site: