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?!