This One's For You, Kathy

Tonight, as I took my dog out to go to the bathroom, I noticed that there was a giant slug slowly making its way across the sidewalk. I bent down and watched it in fascination for several minutes. I know most people probably don't agree with me here, but I think slugs are such cool little creatures.

(Photo Credit for this awesome picture here)

Watching this slug made me think of my good friend Kathy--not because she reminds me of a slug; she doesn't!--but because of her frustration with the e x t r e m e l y  s l o w  pace of Lyme disease treatment.

Kathy, my dear, you may be going at a slug's pace, but YOU ARE GOING! That slug will get wherever it is that slugs go, and you, Kathy, will get to where ever you are going. Just as our friend Melissa reminded us, "The obstacle is the path."

In the morning when the sun comes up, everywhere that the slug walked will have a beautiful rainbow trail in its place, proving that it made it to where ever it is that slugs go, and reminding us that slow can be beautiful, too. Kathy, I have thoroughly enjoyed seeing the rainbow you leave everywhere you go, and I look forward to talking about slugs (and worms!) with you in the future! XOXO

Loss

As we were driving home tonight from a weekend camping trip, I watched out the window absentmindedly as the world whizzed dreamily before my eyes. My brain suddenly registered something that snapped me back to attention. Next to the road was a graveyard, and there, absolutely blinded by grief, was a young woman sitting dazedly on top of the dirt mound of a brand new grave, which--and this must have seemed like a slap to the face for her--was overflowing with a heap of beautiful, newly bloomed flowers. Her car was next to her, and in her grief she hadn't thought to shut the door.

 My heart will break for that woman for the rest of my life--those few seconds forever etched into my memory like a photograph. I have never in my life felt so helpless--I yearned to comfort this nameless woman like a mother yearns to hold her newborn child.

I will never know her name. I will never know who she was grieving for--a parent? A boyfriend? A husband? A child? I will never know her story and I will never know if she went home to an empty house. And she will never know that I saw her and wanted more than anything in the world to reach out to her, but with hands unable to reach, I could only watch helplessly as she disappeared forever from my sight. She will never know that my heart silently broke alongside of hers that day.

Photo Credit

Knot Having Much Fun

When I got sick with Lyme disease, I'm fairly certain my back and neck muscles signed some kind of bizarre contract with the Lyme spirochetes granting them full permission to build their city in my muscles. There are countless very stubborn (and quite painful!) muscle knots all along the muscles in my back and up my neck that refuse to release, much to the frustration of my massage therapist. I get massages at least once a week; I've tried visualization, heat, pretty much anything you can think of.

Two night ago, during my massage, the knots finally gave in and broke up! I was ecstatic and for once, pain-free in my back and neck! However, when I woke up the next day--yesterday--every one of those pesky knots were back and the pain was back. I guess those busybody spirochetes built their city right back up while I was sleeping. Today, the pain in my neck is ridiculous. It feels like I have whiplash. It hurts to turn my neck. I feel like a little old lady!

I have a lot more energy now, so I know the knots are not merely from being inactive. I also never had them before I got sick. I'm curious, do other Lymies have this same problem with muscle knots? Anyone have any luck with getting rid of the knots?

10,000 Views!

Wow--10,000 views on my blog! I am so unbelievably humbled and amazed right now. Thank you to each and every one of my readers, fellow Lymies, family and friends for all of your support through my battle with  Lyme disease. I wouldn't be here without you guys!

Hell on Earth

In March of this year, my doctor decided it was time to pull out the big guns and instructed me to take a very high dose of a medicine to treat my Lyme disease co-infection Babesia. She apologized profusely and warned me that such a high dose was going to be bad. That was the understatement of the year...

Several months later, I am only just now comfortable talking about what really happened when I took the medicine that--although I didn't know it at the time--would give me my life back. It was the most traumatic thing I've ever been through and I've never been more sure that I was going to die (obviously, I was wrong, thank goodness!). I had no way of knowing whether the medicine would help, or worse--do irreversible damage to my incredibly frail body.

Below is the post that I wrote a few days after my ordeal. I knew I needed to write it down in order to heal, but I never planned to let anyone see it. Now, here I am, five months later--publishing my rock bottom.

[When I woke up on Thursday (March 31st), I felt really great. That was the day that I was to start my new medicine. Mentally, I felt strong and optimistic--I was ready! So, I took my first pill and waited nervously. It kicked in after an hour or so and Herxed me right away, but it didn't last that long. I paused, regrouped, and decided to go for it--pill number two, down the hatch!

Pill number two was tougher--the Herxing was bad--and after that, the rest of the day just started to blur together in a clump of misery. It was a very tough day and my Lyme symptoms were having a heyday, but all in all I made it through four out of five of the pills that I was supposed to take. That was my breaking point--my body let me know in no uncertain terms that that was all it could handle. To this day, I honestly believe that five pills would have overdosed me.

I took my last pill (the fourth one) on Thursday at 5 o'clock. Around an hour later, I was stricken by the strongest vertigo I've ever experienced. Around 11 P.M. on Thursday night, my dear exhausted body FINALLY collapsed into a fitful slumber. There is simply no way I can put into words the hell that my mind and body went through on Thursday. However, Thursday paled in comparison to Friday. Four hours after falling asleep, at 3 A.M., day two began.

I assumed that by the second day the dizziness would have worn off, but not so. In fact, it was worse. Any time I moved, I became so dizzy that I would dry heave. I couldn't even sit up, but as long as I laid completely still, the dizziness was, for lack of a better word, tolerable. Any time I had to go to the bathroom, I had to crawl. As I sat on the toilet, I had to hold the wall on one side and the sink on the other side to keep from falling because the room was spinning like it was being sucked up by a tornado.

As the sun started coming up on Friday morning, I was beginning to doubt everything. I was starting to believe that I was feeling sick because of probably nearly overdosing my scrawny body with such a strong drug. And that is when the MEGA Herxing started. If you've never seen a Herx before, it can be quite scary. Some are big, some are small. Some last a few minutes, some can drag on for weeks. I have had many Herxes before--of all different kinds, but nothing even remotely close to what I experienced yesterday.

My body was slammed with full-body jolts that left me terrified, shaking, and physically/mentally exhausted beyond comprehension. As soon as I relaxed, my body would start convulsing and jerking all over again. That was the first time I'd experienced that bad of a die-off reaction. I don't know how I made it through a whole day of that and the best way I can describe it is that it was hell on earth. I made it through with the help of a guardian angel of a friend who stayed by my side for two days.

I can write about the experience, but what I can't put into words is the agony that my body went through--especially the mental anguish the treatment caused my brain to endure. Being too weak to talk or sit up is truly terrifying. Lyme disease takes you so close to the brink of death. It dangles you off the edge of a cliff so you are literally staring death in the face. If you want to live, you will have to fight harder than anything you ever imagined possible. And if you don't want to live--too bad; quitting is not an option.]



I don't write this story for pity. I write for healing. I write for acknowledgement  Most of all, I write this story as a voice for others who are going through the hell of Lyme disease. If our stories are never told, then no one will know how badly we need a cure for this disease! But in order for that to happen, we have to make our voices heard, even though sometimes that means telling the stories that are the hardest to tell. I am one of the lucky ones--after my ordeal, I was able to function again and now, five months later, I am functioning at about 80% of what I used to before I got sick.

"Alone we can do so little; together we can do so much!" ~Helen Keller

(I've been struggling to hit the publish post button on this post for days. Here I go...Gulp!)

Epstein Barr Virus and Lyme Disease

In 2001, I was taking a bath when I noticed that there was a tick under my right armpit. I was so preoccupied that this creepy thing was attached to me and sucking my blood that Lyme disease was not something that ever crossed my mind; also, I didn't even know that people got Lyme in my state (I now know that it's in all 50 states and there are a lot of people with it in my state). What did cross my mind went more like this--Get this disgusting, creepy thing off of me, NOW!"

The timeline of what happened next is a bit of a blur, but to this day I still shake my head in disbelief that no one--not me, not the doctors, not my family or friends--connected my sudden problems with that creepy little life-ruiner under my armpit. I developed a severe case of mono (when I came down with Lyme-like symptoms again in 2009, it also presented as a very severe case of mono).

All of the sudden, I was waking up in the middle of the night with panic attacks. My throat felt like I was swallowing glass. I couldn't go anywhere or do anything for months. I had to have 'round the clock help to take care of myself. As the months went on, I suddenly found myself facing agoraphobia, debilitating anxiety and panic attacks, severe depression, restless leg syndrome so bad I couldn't sleep, separation anxiety from my boyfriend who I had moved in with and who selflessly took care of me through this agony (I married this wonderful man in 2002!).

Until I got sick again with Lyme in 2009, this case of "mono" in 2001 was the most painful thing I ever went through--including my two natural childbirths in 2003 and 2007. This should have been a red flag to my doctor that it wasn't just a simple case of mono! Again in 2009, this second case of mono became the new most-painful-thing-I've-ever-endured-in-my-life. I told my doctor over and over--This. Is. Not. Mono! ("This shooting pain going up my legs is not mono! This blurry/foggy vision is not mono! This joint pain, these tremors, mental confusion--and on and on and on-- are not mono...")

A few days ago, I took my kids to a new dentist. I was absolutely dreading telling the dental hygenist that my kids had contracted Lyme disease and several co-infections in utero from me and had been on antibiotics a lot (this is important information for a dentist to know, because antibiotics can affect the teeth). Imagine my surprise when the hygenist informed me that the dentist had Lyme disease, too! When the dentist came in, we started talking and I had mentioned that my Lyme had initially presented as mono and she said hers did, too!

I remember my doctor asking me surprisedly in 2001, "Are you sure you weren't around anyone with mono?!" My boyfriend and I were baffled at the time at how he managed to escape catching my incredibly contagious case of mono--aka The Kissing Disease--after being in such close contact with me before we knew I was contagious. Could the epstein barr virus, the virus that causes mono, be a tick-borne illness? Apparently, I'm not the only one who has wondered this question! 

Maybe in the future, doctors will ask people if they've recently been bit by a tick if they test positive for mono. And perhaps that could help lead more people to getting diagnosed properly with Lyme disease instead of being labeled as simply mono, when in fact, that may only be the tip of the iceburg!

Thirty One-derful

Turning 30 last year was very difficult for me. Not for the same reason that 30 is traumatic for many people (well, maybe a little bit), but largely in part to the fact that I was supposedly in the prime of my life, yet my body was falling apart. Turning 30 when you are in so much pain you can barely get out of bed is...hellish.

If I look back, this past year was the most incredible, intense, heartbreaking, fullfilling, breathtaking, awful and wonderful year of my life. Good heavens, what a year! While I am not healed, I can function again and that is nothing short of a miracle. Only a very few people knew just how truly sick I was.

 If I look ahead--well, there is just too much unknown about chronic Lyme disease to know what to expect. I don't know what the future holds for me in terms of my health, but that's okay with me; I'm not meant to know. I have learned/am learning/keep learning that all I have is this moment--this very precious moment right now. It doesn't matter if I'm sick or well, happy or sad, it is what it is and I'm free to do with it as I choose--to waste or to cherish.

I am not the same person as I was at this time last year. Sometimes I just wish I could shake the people around me and wake them up: Life is waiting for you! Don't wait until it's too late to find that out. If you have your health, don't take it for granted for a second! And if you are sick, hold on just a little bit longer--if you give up today, you will never know if tomorrow is to be the day you will get better.

Sometimes, I feel like I've just been let out of jail and I'm seeing everything full of promise again and ripe with new beginnings. I am no longer a prisoner in my own body. I am no longer a captive of Lyme disease. There were so many dark days when I wasn't sure if I was going to survive, but lo and behold, I did. Maybe I need to shout it from the rooftops: I did it! I survived!

In parting, I leave you with my thirty one-derful birthday wish for you: Live each day like it's your birthday, and treat everyone you meet like it's their birthday.

Which Came First: The Chicken or the Egg?

We made it home late Saturday evening from our week long vacation in Muskoka, Ontario. I went to Lake Muskoka for the first time with my soon-to-be husband in 2001. His family has been going there for years and it didn't take much for me, too, to fall in love with the area. In 2009, married and with two youngsters, we returned to Muskoka for a seven day vacation. When I left in 2009, my life was forever turned upside down by Lyme disease.

I often find myself wondering which came first--the chicken or the egg? Did I already unknowingly have Lyme disease when I went on my trip or did I contract it in Canada? I never saw a tick on me, but I never checked. And considering only 50% of people ever recall a tick bite, that complicates things a bit.

I know this much is true: My mother found a tick crawling on her when she was pregnant with me. She found a very engorged tick behind my ear when I was a child. I had another tick bite in 2001, after which I now know I contracted at least babesiosis.  In June of 2009, I was in a very traumatic car accident in which I flipped our car. I now know that Lyme disease can lie dormant in your body and that the stress of a car accident can bring it out of dormancy. The chicken or the egg...

A few days into the trip to Canada in August 2009, two months after my car accident, I got an intensely itchy rash under both of my armpits. Was that the sign that I had just contracted Lyme disease? Or perhaps that was the moment I contracted one or more of my other tick-borne diseases, since tests have revealed that I have several, and not just Lyme disease.

Was it the mosquitoes? Was it the trip to a mini-golf course where I sat on the rock walls under the trees while I waited my turn--an area that would have been paradise for hungry ticks? I went downhill quickly after the rash. One symptom turned into 70+ over the next few months. I blamed Canada. I blamed Muskoka. I blamed that damn mini-golf course. (An additional slap in the face was the fact that I came in last place during that mini-golf game--losing even to my six year old son.)

Needless to say, going back to the same area where it was highly possible that I contracted Lyme disease was quite frightening. But I've had two years to mull over the facts. I know that I've had symptoms of Lyme disease since I was quite young. I know that you can have Lyme disease and not be disabled from it, and that it can also go into dormancy. I know that my car wreck was very traumatic. I know that I ate a lot of sugar on my trip to Canada in 2009 and it's highly possible that my body, already weakened from the stress of my car wreck, was extra susceptible to candida--which could have accounted for the reason for my downward spiral after the rash.

When we arrived at our cottage last week, I was very scared. There were trees, tall grass and wildlife all around us. Our silly new friend "Chippy" the Chipmunk greeted us at the window several times a day--quite a treat if you don't know much about Lyme disease, but for those of us with The Fear, we know that cute little animals just like Chippy carry ticks and drop off the tiny hitchhikers a little too close for comfort. The fear of being rebitten is a constant threat.

When we planned this trip at the beginning of the year, I couldn't imagine that I would be well enough to go. The thought of enduring an 11+ hour car trip seemed like a cruel joke, since simply riding in a car across town was often too much for my weak body. It was in March of this year that my doctor struck gold with the medicine that would give me my life back, and I thought--really thought--about the reality of setting foot back in the place where my life fell apart.

The thing is, this trip was a huge triumph for me. My body was able to handle a very long car trip. I was able to function all week. I was just like all the other happy vacationers without a care in the world. This trip was like finding my way home. It was my victory over being almost completely housebound for months on end. This was my victory over all the things Lyme disease took away from me. It was like finding the missing puzzle piece under the couch and being able to finally put in the last piece. I feel like I've come full circle now.

Lyme disease 4,000,000/ Alyson 4,000,0001. Yeah!!!

PS I still lost at mini-golf this time, even to my now-eight-year-old son. However, I did manage to beat my three year old, but only barely. I also managed a hole in one....except it was not the hole we were on. Ooops.

Vacation

Tomorrow morning, at the crack of dawn, my little family is loading up our trusty old Subaru station wagon and we are heading out for a much needed vacation. Traveling while sick has me excited, nervous, and a lot of things all at once! It is surreal packing up a week's work of medicine in a box. I know I have a lot, but seeing it is another story!

All of this just for a week? Really?!

See you soon, blogger world! I don't know when I'll have access to internet.

~Alyson

Howya Doin'?

It seems like it's been a while since I've done a post on how I'm feeling. But, perhaps I wrote a post about it just yesterday and I don't remember--which leads us directly into my first major Lyme disease problem: I have made vast strides in the old memory department, but lately it's starting to......uh, what was I talking about?

"Howya doin'?" posts are definitely not my favorite, because, well, they're so far on the boring side--both for me to write about and for you to have to read. If you're like me, reading a yawn-inducing blog post about someone who's whining about how they never feel good is not high up on my list of ways to spend my precious time.

Things are ever changing in my Lyme-riddled body, and it's hard for me to keep up with new symptoms, let alone for you to keep up. Because I can't remember diddly squat, writing these symptoms down here is the best way for me to record my pesky Lyme (and multiple co-infections) symptoms as they come and go.

So brace yourself, because here comes a list of my current super-exciting-and-not-at-all-yawn-inducing symptoms:
-weight loss (down five pounds on my already-way-too-scrawny frame)
-hair falling out (should have saved it from last time to glue back on!)
-bruising (Maybe I can still get my brother grounded after all of these years...Mom! My brother hit me! )
-foggy vision (mild, but back again after a long hiatus)
-light sensitivity (same as above, back after a long break)
-memory problems (my middle name should be "Did I already tell you...?")
-joint pain (hands, knees, hips, jaw)
-doubling-me-over stomach pains (This is a new symptom for me. It started a few weeks ago. I had an ultrasound done to check on my gallbladder and liver--common problems in Lyme disease--but both were happy and still smiling.)
-ear pain
-insomnia (I. Do. Not. Sleep. Ever.)
-fatigue/Lyme crashes
-muscle aches (flu-like aches; almost always in my legs)
-Lyme chills (Really? In the middle of a heat wave?)
-napping (This one is confusing since you just learned that I. Do. Not. Sleep. Ever. My body likes naps about as much as a three year old likes naps.)
-diarrhea (Came back again after starting a new medicine; stopped medicine, but too late--reawakened the beast!)

So, I lied: That list was pretty boring. And now that everyone knows all about my bowel functions, I feel like you should all introduce yourselves. Anyone still out there?

(Click for photo credit for this awesome picture!)

Setting a New Pace

When you're healthy, it's easy to be sucked into the hectic, go, go, go pace of everyday life and it's hard to find the time to slow down and enjoy a quieter, calmer pace. On the flip side, when you have a chronic illness like Lyme disease, you will find yourself with a lot of time to sit and twiddle your thumbs.

Thanks to Lyme disease, I've had a taste of both paces: Pre-Lyme disease--"I will make you a peanut butter and jelly sandwich right after I wash the dishes, do the laundry, change the baby's diaper, scrub the toilets, run to the post office, feed the dog, put gas in the car, and blah, blah, blah!"/And during Lyme disease--"Hey, Honey, come look at this! That crack on the ceiling looks just like a moose! And look at that! That one looks just like Abe Lincoln!"

So now, as I revel in the fact that I have more energy again and I'm able to do more things, I struggle with putting into practice some of the most important lessons chronic Lyme disease has taught me: Slow down or you'll miss out on everything! Life is precious and you are not promised tomorrow. Live in the moment. 

It seems fitting that as I began working on this post this morning (I'm a very slow, perfectionist writer, if you didn't know), I found myself sitting there typing away on the laptop, with my kitty softly purring on my lap, traces of a peanut butter and jelly sandwich on my face and with hair and clothes soaking wet from playing out in the rain with my three year old. I stopped writing, closed my eyes for a few seconds and got lost in the moment.

And then I got up, swept the floor, did the dishes, gave the cat his flea medicine, etc. Moment over.

“Drink your tea slowly and reverently, as if it is the axis
on which the world earth revolves - slowly, evenly, without
rushing toward the future. Live the actual moment.
Only this moment is life.” — Thich Nhat Hanh

Lyme Friends

For photo credit, click here

Over this past year, I have made some incredible friends, thanks to the internet. I always thought it was kind of creepy to make friends with people I didn't know through the internet, because I didn't want to end up on a Lifetime Movie. Well, Lyme disease has changed a lot of things, including my beliefs about making friends on the web!

When I started reading Lyme disease blogs, I found myself relating to story after story. These people could have been describing my life! I tentatively started commenting on blogs and then worked my way up to emailing my new friends and eventually finding them on Facebook.

As a result, I have made a group of Lyme friends who are the most amazing, awesome, inspiring, caring, considerate, tenacious, and funny friends that I could have ever dreamed of!  These friends have all been through hell and back from Lyme disease and they are as tough as they come! We are cheerleaders for each other--celebrating triumphs, crying for each other as we stumble, and helping each other find the strength to get back up. To have friends who truly understand how hard Lyme disease is has played a very important role in my recovery.

Now that I'm functioning at a much a higher level (I'd say currently around 75% of what I used to), it's strange being on this side of the fence, thinking of myself as the "healthy" one (I'm using that term pretty loosely) compared to many of my other Lyme friends. It's hard watching my beloved new friends backslide, and it's hard watching the brand new ones just starting their treatment. It's hard watching them fight for their lives, day after day. Now I have a glimpse of what it was like for my own friends and family to helplessly watch me stay sick day after day.

I am blessed to have these new friends in my life, and I look forward to meeting other many new friends along the way. I think it's so amazing that Lyme disease opened the doors to these amazing new friendships at a point in my life when it shut nearly every other door.