The Rash Decision

Today started like any other day.

I pried myself out of bed, woke up, got coffee, started laundry, and finished spray painting a suit jacket. (That part is actually more normal than you would think. I live an artistic life.)

I accidentally got some pink spraypaint on my FAVORITE BLACK COMFY PANTS, which is reason enough to panic. I ran to the basement (lol, like I run to do anything. I hobbled with purpose) got some pretreat stuff on the pants, and threw them into the washer. Then I threw on some daisy duke type shorts, and went outside to check on my flowers.

That was when I realized I had spray paint on my leg in a really weird pattern.

How in the heck did I do that? 

I went back in, grabbed some baby wipes and started scrubbing, but no paint was coming off of my leg. So I scrubbed harder. Still nothing.

That’s when I realized it was not paint. It wasn’t painful, but it was a weird-looking rash.

Now, what you have to understand is that I am extremely normalized to all things weird and lyme related. Air hunger? No Biggie. Numb toes for days on end? A walk in the park. Heart palps and dizziness? We got this.

So for something to really freak me out, it has to be an absolute doozy.

And this one was. Because my mind immediately went to all the scary stuff- blood poisoning, MERSA, sepsis- you know. The stuff adult nighmares are made of.

In fairness, my legs are stupid swollen because I am working retail a few days a week at the health food store (which I LOVE). And keeping my feet up for long stretches of time when I’m home is pretty hard to accomplish. So *maybe* it was just from my legs blowing up? But I needed to know for sure because the last thing I need is some bizzare blood infection that lands my butt in the hospital. I have NO TIME FOR THAT. Uggggg.

I immediately snapped a picture of it, then started getting ready to run and have it looked at- there is no way I was going to let something like this be a “let’s wait and see what happens” kind of symptom. I had my daughter drive and we ran up to the healthfood store (one of the folks who works there is a rash expert) and by the time we got there the rash was pretty much gone.

So I showed them the pic. This pic.

 FREAKY ASS RASH, amiright? 

Turns out, it’s just another dumb lyme issue (borreliosis dermatitis) and it basically means I am kicking the lyme out of my organs and systems and so under my skin is one of the last places it has to go. It’s actually a pretty good thing, and is easily fixed (either wait an hour or put some of my special lyme killing stuff on it with a bit of coconut oil.)

When explaining Lyme to newbies (or those who ask about it) I always talk about the Lyme Symptom Roulette Wheel. What I mean by that is you never know what symptoms you will wake up with from day to day, or the severity, or how long they will last. If you think of it as an interesting gambling experiment, it’s not so annoying. So I guess I have a new symptom to add to the wheel!

And it doesn’t hurt, it doesn’t itch, it just looks AWFUL. So I suppose as long as I don’t ever get it on my face- I can live with it for a while.

And I’m looking forward to the day when my morning normal is coffee and facebook and pooping like the rest of America.




Moving along

(This is not a post meant to be read like a complaint. This is simply a description of the current situation my body is in. No pity necessary. For informational usage only.)

The Vagus Nerve. The one nerve that causes all sorts of chaos if it gets inflamed or agitated. The nerve that is making my life a living hell at the moment.

We are in the middle of moving to a different house. There’s tons of work to be done. So much stuff to be packed and moved into the new place. It’s a nonstop parade of boxes and baskets and loads of items we have accumulated over the years. And when that vagus spasms, I have no choice but to stop what I am doing RIGHT FREAKING THEN, cough until I start sneezing uncontrollably, and then it’s done. It happens several times a day. Like 20 times, or more.

It’s got a few other random symptoms and side effects, but those aren’t too awful. It’s just the random coughing and sneezing that irritate me. Even if I’m carrying a box, I have to stop what I am doing and wait for that nerve to do it’s thing. I have no control over my body for a good minute, so I just stand there like a goof, coughing, sneezing, and waiting until it’s finished.

Right now I’m frustrated. When there is a big job like moving to be done, I like to think that I am aggressive about accomplishing things. But with lyme, all bets are off. I can’t deal with nearly as much physical work  as is required for a move. And even though we are going slow and steady, it’s still a bit too much for this body in the current state it is in. Especially since I am over-using my legs and they are stupid swollen.

I’ve backed off the lyme killing protocol until after the move, and I’m only using the comfort stuff that helps soothe the aches and pains and major symptoms. I’m trying so hard to be kind to myself right now, and killing lyme is HARD. It’s tiring, and you have to protect yourself, like wrapping bubble wrap around your insides. Even on a gentle formula, it still requires rest, constant detox (so you don’t get sick) and all that fun stuff. So I have to take a break so I don’t break myself. I’ve also got to deal with keeping everyone else going strong, keeping up with their meds, etc..


My plan of attack is to spend the 2 weeks after we get officially moved in doing nothing but netflix and couching. Until then, I have to suck it up and get things done.

But the new house has a cabinet that will be specifically for all of our lyme meds, and I can’t wait to get that organized and put to use! I am going to have tons of counter space in the next house, and none of it will be dedicated to the med systems. You guys have no idea how exciting that is for me! It really will be a wonderful place for us once we get settled in.

But for now, for today, we just have to focus on getting there. Powering through the work. Finding time and energy to still make dinner. Trying to find moments of great joy in the middle of exhaustion. And one of the joys is thinking about all the new memories we will make in the new house- friends, family, art… we will make that house feel like home in no time!

It’s a big new adventure for our family and we will have tons of fun soon. And I can’t wait for the finish line to arrive so we can say it’s all done!

Lyme may slow this family down, but it never stops us!

We keep moving forward. Especially for the next 9 days!





May We Talk About Lyme

The month of May is really close, and this will be the first year our family is celebrating LYME AWARENESS MONTH!!!!

I’m a big believer in celebrating for ANY reason you can find. Parties and fun times are the best parts of life. Lyme just brings a different sort of party to the crib. A slow moving, slightly forgetful sort of party. Which as a bonafide introvert, I’m totally down with.

But when I looked online to find a t-shirt to wear with pride that adequately expressed my feelings about this disease, I couldn’t find very many options that were toothy, or slightly biting, or sarcastic.

And I was disappointed. Because a funny t-shirt can come in quite handy. They are great conversation starters at the grocery store or wherever else you may roam. (I have 3 hungry teenagers. I’m always at the grocery store)

So what did I do? I had my husband design some. Here are a few of my favorites:









Aren’t these fun? Way better than a plain ol’ boring shirt!

You can find all of these (and a lot more) at Dapper Dragon Arts where all sorts of fun wearable things are available.

Eventually we will get hoodies up, but this is a good start. And we will be adding more as inspiration strikes (usually in a fit of whining about the suckage factor of Lyme disease) so check it often!

So in May- we all need to educate our communities, friends and loved ones about life with Lyme. It’s our month! Let’s USE IT!

But most of all, no matter what the month is, we just need to keep working at getting the word out.

Because how many THOUSANDS of people are walking around with LD not knowing it’s the problem? Maybe they think it’s all in their head. No one could actually feel this awful. (Unless you have lyme, am I right?) That’s when our collective voices can lead them to answers. And we all know that knowing what the problem is, giving it a name, is half the battle. Then, it starts to become a fair fight for health.

Let’s all go out and preach to the world-


Knee-d to Know

Once upon a time I lived a life free from the thought of Lyme Disease. Boy, those were the days.

When Amy first was diagnosed with it in July of ’15, it was the first time I really did any reading on it. And by reading, I mean scoured all the corners of the internet for information. I was shocked at how this dumb disease was a) right under our noses but no one really ever talks about it, and b) so widely misunderstood and misdiagnosed.

I’m working really hard to fix that, at least with the talking about it part. I’m making it my job to educate as many people as I can, especially in my community. I will answer all the questions they may have, share our story, and try to make folks understand how tough it is on a body.

The other night I posted a picture of my lymie knees on FB and instagram. And I think it may have scared some people. The post on FB was oddly quiet, save a few friends who enjoy messing with me, and thank goodness for them. Because it was enough that my confidence was bolstered a bit.

See, I worked REALLY hard a few years back to lose a crap ton of weight. (101 pounds, thank you very much!) And keeping my body in “decent” shape has been a priority since then, because I never ever ever want to gain all that weight back. I allow myself to be a little on the flabby side, but once I hit 165 I start working my butt off to get back down a bit.


I’m feeling swelly and not so great about my body. ESPECIALLY MY LEGS.

I can’t do aerobic things like running or jumping jacks. (Ok, in fairness my boobs have always been too big for jumping jacks, but still…) I can walk most days, especially now that we’ve added Fedegosso to our tinctures, which appears to be fantastic for joint pain. It’s crazy effective. But that doesn’t mean that my lymie knees LIKE walking.

In fact, they HATE IT.

But in the interest of educating the world, I’m going to share with you the evolution of my knees. I’ve been taking pictures of them lately, because I find the whole thing fascinating. Horrifically fascinating.

This was on March 31st. Just a little swollen, but not horrible.


Next, April 7th, only swollen at the top of my knee, complete with the alien coloring that my skin takes on during a good herx. Yeah, I take pictures of my knees in the bathtub. Doesn’t everyone? No?


Now April 11th. This was a very painful day. CLEARLY. My knees had rolls. And both legs were so. damn. swollen.  I didn’t move much that day, for obvious reasons. I also cried and swore a lot.

But I finally got it a little more under control, and was slightly improved on Saturday, April 16th. But still, lyme loves to mess with the right side of my body, and it shows.


And now, because yesterday I got all stupid and pretended I was a damn superwoman, I’m back to no-fun knees today. Also, after seeing my legs in the brilliant sunlight of morning, I need to do some spray-tanning.


This is why Lyme sucks so much.

I can plan my life way in advance, but ultimately until I wake up in the morning, I have no idea if I can do stuff. When it’s a bad day, I’m toast. Netflix is my only task. But on good days, I try to do all the things, which is how I fry my knees, and that’s how the cycle goes.

But I’m really proud of the fact there are lots of days when I just push through regardless. Lyme can slow me down, but it’s not going to stop me. I am a big believer in keep going when the going gets tough. It’s the only way for me to live, since tough happens a lot. And frankly, it’s not like I can stop completely to just do nothing but heal. I have a family to take care of, kids to pick up/drop off, and it’s not like I’ve got a maid. Even with Matt pitching in constantly, it still takes a lot of effort to keep this household running.

With so many cases of lyme in the house, we all try to pitch in on good days when we are able, and have grace and compassion for who ever is struggling with a sucky day. And that’s actually really cool to see. We get each other drinks, meds, food, and whatever else is needed. But everyone takes a turn being the on call helper when it is decided they are the least uncomfortable person in the house. I’m so glad the offspring are willing to do this.

It’s teaching them when life throws you a curve ball, you get in there and keep playing ball.

You help.

You push through.

You help those who need you.

And that’s something I think everyone knee(ds) to know.

The Struggle is REAL

I am ever the optimist. Always looking on the bright side of life. (cue: whistling)

But today, I’m struggling with it. And while the main purpose of this is blog is to help share some of the lighter stories and moments about living a life with Lyme disease (or in the midst of several cases, as it were), I would be remiss if I never addressed the dreaded dark days.

HOW I WISH I was some autobot of happiness, who never had to fight to keep her spirits up. But that isn’t always the case.

Yesterday was a kick-ass day. I felt fantastic, I got a lot done, and I was pain free. Everyone else had a pretty great day too. Man, I loved yesterday.

And then today came along. It’s raining, which means symptoms in the house are flaring up because lyme makes your body a flipping barometer. Everyone kinda feels like crap. Including me. But I’m the mom, and that means I have to try and take care of everyone. Physically, mentally, emotionally… And all I want to do is hide in the shadows and bury my head in the sand just for a little while. I want to close my eyes and stomp my feet until we are on the other side of this mess. Unfortunately, I don’t get that option.

My reality is tough. Lyme is everywhere in this house, and I feel this overwhelming pressure to constantly be fixing my family. Symptoms are all over the place, and everyone has a different sort of struggle with it. I rush from person to person, trying to kiss all the proverbial boo-boos and make everyone better.

I’m insanely tired and sleepy. I’ve got one leg that decided not to participate in life today. (I don’t blame it. I don’t want to participate either!) It still works, but it’s just… numbish. It feels heavy, and I have to concentrate really hard to get it moving. As an added bonus, the numbness seems to have gone up into my bladder, and I’m having a hard time controlling things. I already struggle with this on a normal day, and you know what?

It is DUMB. This whole disease is one big stupid pile of DUMB.

(Ah, my words are so eloquent, don’t ya’ think?)

Please hear me loud and clear- this is by no means me giving up or saying I can’t handle it. I’m not falling into a deep depression.

I’m just saying this is hard.

And there is freedom in admitting how incredibly hard it is.

More than anything, my goal at this particular moment (besides not falling asleep at my computer) is to get to a better day. One where I’m not so damn cranky. A day that just feels like the old normal. (And my old normal wasn’t easy either, so that tells you my current level of desperation.) What I wouldn’t give for everyone in this house to feel amazing and never have to endure one more second of Lyme and the chaos it creates.


in the moments where it feels soul crushing and hard…

I’m glad it’s my struggle and not yours.

I’m thankful that we have the means to deal with our situation, as uncomfortable as it may be, with treatments and foods that help us get better.

I’m OVERJOYED that the kids know I’m there 24 hours a day, trudging through this with them. They are never alone in this, and I’m not either.  I mean, wow, isn’t that just the best gift I could possibly have?

I’m grateful that Poise Pads exist.


I don’t like hard days. I don’t enjoy them. But what I do enjoy is knowing that WE WILL GET THROUGH THEM. And when that happens, I will look back and read a post like this and think “Wow, look at how far we’ve come since then!”

And it’s that moment I am living for. Why I don’t let days like today break my spirit. Why I do everything in my power to struggle through today.

I hope tomorrow is way easier.

But if it’s not, I’ll put on another poise pad and keep going until it does get easier.

Because the only way out is through.

Did I mention how thankful I am for wine?


How To Lyme Like a Champ

I love a good how-to list, don’t you? It’s like someone really wants you to be successful, so they write down all the important bits and moving parts so you know what comes next.

I thought I’d take the opportunity today to share some helpful hints on dealing with LD. Just in case you are new to the disease, or maybe a friend has it and you are wondering what all the fuss is about.

If you do have it, with this step-by-step guide, you can go from being a so-so lymie to the most powerful lyme killing warrior in the history of ever! Maybe not quite that amazing, but you can still be pretty bad ass and the envy of all your friends on the internet.

    1. Nap on a professional level. I’m not talking about catching a quick 20 minute cat nap- I’m talking HARD CORE DEEP REM-STATE NAPPING. Naps are your body’s way of catching up, and extremely important. I’ve always been a lover of naps, but lately, I’m obsessed. There is a genuine feeling of relief for your body that comes with a good nap. And when you are fighting lyme, every nap becomes a power nap. It helps you be powerful. Embrace it.
    2. Leggings are pants, but pants are also optional. I have nothing bad to say about leggings (they are my bottom of choice) but maybe you aren’t a fan. What I’m attempting to make clear here is that your comfort is more important than your fashion. Sure, we all have to put forth effort now and again, but if you are home- be comfortable. What ever comfort looks like to you. 5 layers with 2 blankets on top of you, or a tank and nothing else… It’s bad enough you aren’t comfortable in your own body. Why add a fitted waistband to that party? Leggings are 100% acceptable. If you want I can write you a note stating so.
    3. Take your meds, whatever they are. I’m not here to tell you and sell you how to heal your body. Even in our house, there is a vast difference on what people take, so it’s a very personalized approach. I get it. What works for us might not work for you. And that is totally ok. What I will say is if you don’t take your meds, you won’t see any improvement, no matter the plan of attack. So suck it up and take them.
    4. Massages ARE medicine. Dude. This is one of the few perks us lymies have. So cherish it. Run with it. Find a skilled massage therapist and PUT THEM ON YOUR SPEED DIAL. Or better yet, make them your ICE contact. (Because really, we all know folks with lyme avoid hospitals anyway. Go where you can get the help you really need. lol) Speaking of which- When people ask how they can help? You tell them: Gift certificates for massages. End of story. Because help with a meal is fine and dandy, but a good massage can make your whole week better!
    5. Get a support system in place. I’m not talking about the people that help care for you. I’m talking about other people who have lyme. I’ll be first to admit, before my diagnosis when it was just our oldest kid dealing with it and treatment, I had no clue what she was going through. I was empathetic, but there’s a whole new level of understanding now that we are all in this together. And it is needed. No one else can understand that you are dealing with a mean case of air hunger or bell’s palsy or that you have an ammonia headache so bad you want to pull your hair out. Those who know exactly how you feel are better at saying what you really need to hear.
    6. Crack jokes about your current situation. I saw a lyme meme the other day that said “Lyme is no laughing matter.” And I heartily disagree. IT IS SERIOUS, I won’t argue that point. We need to be taken seriously in doctor’s offices and by insurance companies. It’s so very real. But that doesn’t mean you can’t ever laugh about it- or that you shouldn’t. The other night someone did something (I gots the lyme brain today so now I can’t remember what) and everyone in the house started clapping. After I clapped, my right hand went numb. It was ridiculous. And do you know what I did? I LAUGHED. And made a joke that I had played lyme right into my hands. It was a dumb joke, but laughing is great for endorphins. Which makes you feel better. So laugh. Laugh at all the things, at anything!
    7. Accept that life will continue on during your struggle. This one is a rotten egg of a truth, but it’s important to discuss. Life has no intention of slowing down even if you do. And it sucks big donkey balls. There will still be dishes and laundry and kids getting colds and grocery runs and work and crap like that. And it’s going to feel overwhelming. I was sharing this with my amazing friend Carla this morning, and she said “I think your plate is maxed out and someone needs to come and say ‘Ma’am it appears you were finished with that, may I take it away?'” Which made me want to jump for joy, because I had never been able to put that into words. And I didn’t jump for joy because *knees with lyme* and that’s a dangerous game. But yeah, it’s a fact my plate is maxed out like there’s a thanksgiving day feast every single day. How do we fix it? Unknown at this time. Basically, I think we have to muddle through as best we can. There’s no shame in clearing off your plate a bit. One of the most helpful phrases I’ve learned is “I would love to, but it’s not a priority to me right now.” Learn to say no when it’s optional, and deal with the priority stuff. The optional stuff will keep.
    8. Remember that you may be a person who has lyme, but you are still a person. This also applies to situations like motherhood. You are still you inside. All the meds in the world won’t take that away. Lyme won’t take it either, unless you let it. Do things that you enjoy. If you have energy, it’s ok to skip housework and feel like the person you are. For me, I try to get out once or twice a month to do stand up comedy. It helps keep me regulated and blow off some steam.
    9. Seek life with balance. This last one is another tough one, (especially considering lack of balance is another dumb symptom) but it’s a legit goal. Lyme loves keeping you in the valleys, presumably where the damn ticks all reside. It wants you to stay low and injured. That’s the purpose of it. RESIST THIS. Find your sunshine. Claw your way up to the plains and mountains to get some sunshine! (Anyway, you know you need the vitamin D so you don’t get the rickets.) It’s not all going to be hard times, but they are there. Hold onto the highs in your world to help you combat the urge to stay in the low places. Eventually, it will all even out and you will find your sense of balance. I’m not there yet either, but I acknowledge my lack of balance. Which gets me one step closer to finding it.

And there you have it! This should get you well on your way to Lyming like a champ!

Herxes and Curses

Starting the treatment we use for lyme in this house is what I like to call an interesting experience.

We don’t use antibiotics, instead we have an all natural protocol, filled with herbs and tinctures to help the body kill lyme bacteria slowly.

And does 2 specific things: Induces a “herx” and pokes the bear.

Now, when I say induces a herx, this probably conjures up many thoughts and questions. First of all, a Herxheimer reaction, or herx for short, is a die-off reaction, and basically is your body detoxifying itself. Think about the way you feel after a night of heavy drinking- your body attempts to re-balance the systems and thus you have a hangover. Herxing is like a lyme hangover. You start killing the lyme, it dies, and then releases all these nifty toxins and proteins in your body. It can feel very much like the havoc lyme itself causes, and if you’ve been uber-agressive with treatment and had a major dieoff, the body does its best to push all that junk out.

Now, to someone has chosen to fight lyme using drugs and antibiotics, the word “herx” will make them shake in their boots. Medically induced herxes are painful, and frankly can be downright terrifying. (If you have watched the documentary “Under our Skin” you’ll get a taste of how painful the recovery process can be.) The dieoff is so big that you yourself may feel like you are dying. Herxing on a grand scale can easily put you in the hospital. That’s not the goal, of course, but it happens.

The type of herx we experience is slow and controlled- we sweat. We get super pink cheeks and sometimes the skin in various places on our bodies looks splotchy. We need naps. We might get a  headache, and possibly feel dizzy. Our armpits flow like the nile river. Stuff like that. The program we have designed is gentle to our systems, but takes the life out of Lyme cells. Is it uncomfortable? Yeah, but it’s a managable situation.

The other part of treatment is “Poking the Bear.” (The Lyme Literate Doc, or LLMD, doesn’t call it that. I call it that.)

This part is where lyme is a bitch. One of the herbs has a very specific job- to disrupt the biofilms and basically bring the lyme out into the open so the rest of the treatment can attack and destroy it. It’s much like the recent law enforcement ploy a few days ago in Texas where they announced that a bunch of locally made meth was mixed with ebola and asked people to bring their meth in to be tested. So a couple meth heads brought their stash into the police station, worried about getting sick from ebola, and were arrested on the spot. (DUDE. Meth. NOT EVEN ONCE.)

Ok, so that’s the goal with lyme. You draw it out of hiding from inside it’s biofilm cocoon, get it out into the open and then deal with it appropriately.  You poke the hell outta that bear. Unfortunately, that also means you have to endure a slight influx of symptoms. It activates it a bit until it destroys it. Which takes time, because I repeat- we go slow and gentle. Everyone’s body responds differently to this method (and I can say that with utmost authority with 4 cases of lyme in the house), but for me the stupid lyme congregates to one place.


Lyme loves my knees. It’s like a party zone for spirochetes. A veritable lyme frat house. Which causes me great agony in the night. And the day. And the afternoon. UGGGGGGGGGG.

I’ve always been a pacer. I am one of those people who walks around when they talk on the phone, I have to move a bit to keep away the A.D.D. tendencies, and basically I enjoy walking. But when lyme starts converging in my knees, I can’t pace the floors as much. I have to keep my knees slightly bent and elevated. Putting weight on them feels like I’m holding a hot searing knife under my kneecaps. Not that I’ve ever done such a thing, but artistic license, y’all.


Egads. My knees blow up like a softball, and it continues into my calves. I get those cute rolls on my legs like chunky little babies have, only considering the fact I am 463 months old, it’s not nearly (or knee-rly) as adorable when it happens to me.

So when I’m dealing with both a herx and have poked the bear sufficiently, to say I’m something of a hot mess is an understatement. I drink extra water to combat this phenomena, I increase some of the treatment options, I do everything I can think of and then some to help relieve the pain and suffering one experiences during the double whammy of treatment.

But there is one surefire way I can help myself deal with it that honestly works. And this is a remedy is totally free.



And I’m telling you this because I think it’s got a practical application, both as a legitimate treatment protocol for Lyme, and in non-lyme situations. You may already utilize this method, because it’s an age old fix, but I’m here today to give it a facelift of sorts. Because I use swear words in a yoga-like fashion. For example.

Let’s say I have been laying with my legs propped up, and I have to get off the couch to get a drink or to pee or to let a dog outside. I know it’s going to hurt. So as I make my initial move with the first leg, I deeply inhale, and I do it to the tune of the f-bomb.


I find the U vowel is especially effective at letting one draw in a full breath.

Once that first leg hits the floor, I start moving the second leg, and I transition the breath into an exhale, finishing out the phrase.


Again, the E vowel allows a slow controlled release of the breath, and makes a very gratifying hissing noise.

Once both legs are on the floor and I’m ready to move into standing, I repeat the swearing/breathing process, with different body movements.

“FUUUUUUUUUUUUUUUUUU”- I have now moved into a bent over standing position, paying close attention to weight placement and keeping stress off the knees.

“CK MEEEEEEEEEEEEEEEEEEE”- And with that exhale/cursing breath, I have now gone from a 90 degree angle into a full standing position and am ready to move and accomplish the task.

I highly suggest trying this method, and it can be done somewhat silently, in case you are in a public place or around children. An alternate phrase would be a long version of lucky.



You’ll get roughly the same effect, but mentally it’s not nearly as satisfying.

And that’s my contribution to the medical world. I’m considering writing a paper and submitting it to medical journals. And as they read my proposal of curse-breathing as a valid medical treatment, I’m sure they will swear under their breaths. Which will prove it’s effectiveness. And then I’ll win the Nobel Prize for contributions to medicine.

Ok, that’s not going to happen. I don’t have the energy for all that.

But at least I can get off my couch.

One F-bomb at a time.












A Dose of Honesty #1

Lyme can break your heart.


As I sit here at my computer today, I’m not sure what I want to say, other than this isn’t a situation I would wish on anyone. Dealing with Lyme Disease requires so much time, money, energy, commitment, and sacrifice… it’s one thing to get a cold that lasts for a few weeks and overturns your schedule. It’s a whole other ball of wax to have to build your entire life schedule around a disease that sometimes feels like has no end in sight.

I try really REALLY HARD to focus on the good stuff. 

But on days like today, I feel a bit more realistic (and frustrated) about the hard work involved.

It was tough enough when it was just one person in the house with Lyme. Because Amy (our oldest daughter) was so sick in the beginning, and of course I had no clue what we were really dealing with, being new to Lyme Disease, I completely devoted my world to making hers better. It’s a decision I don’t regret, especially because she has made such amazing progress over the last year since she started getting sick. We have witnessed first hand that things get better.

But there were so many hard nights. So many days heavy with work.

Now that the house is dealing with Lyme on a 4/5ths ratio, it feels the work load has hit an unmanageable level. Matt (the hubs) has stepped up and taken on so much extra stuff, which is the saving grace of this household, and also why we all have clean socks and underwear everyday.

But during the day, when he’s not here, I have to push and fight myself to get crap done. Yesterday was meds day. Once a week I get every single pill and tincture measured out and coded by name for the coming 7 days. There’s an involved sticker cup and lid system (because stickers make everything more fun)  that everyone follows, which we have done since the beginning of this mess. The entire process takes me about 2 hours from start to finish. Because it’s specific doses and med combinations that are individualized, and everyone has different thresholds and places in their recovery, myself included. It’s so much to keep straight! When it was one person for a while, I was able to get it done for 30 days ahead. When it was just the girls, I did it for 15 days in advance.


One week. That’s all I can muster. Not to mention the “med station” section of my counter can’t hold much more than that.

So there I was yesterday afternoon, sitting on my stool in the kitchen, measuring out our particular doses, filling pill cases, when the girls came in and sat in the dining room. They started chit chatting, and I was listening but trying really hard to focus on the task at hand.

That’s when the girls started talking about the person they think the other would end up with in future relationships. There were stories about what they would do, what that person might look like, and even talk of potential things they would fight about. And of course the pets they would own together. But you know what?


And that broke my heart, but in the most wonderful way.

All the hard work, all the meds, all the sleepless nights, all vegetables and whole foods I’ve cooked- every single sacrifice we’ve made in the past was so that these gorgeous teenagers can focus on a future where this flipping disease has no foothold in them. 

There’s a huge correlation with having a positive attitude and healing your body. When you wallow in pity, chances are you will increase your recovery time dramatically. But when you look at your actions as empowering yourself to beat Lyme, well… that tips the scales in your favor.

Somehow, we’ve managed to empower these kids. But it felt easy, because parents WANT to give their kids the best chances for success. Yet to be frank, I’ve been letting myself wallow since my diagnosis. Probably because treatment makes you feel like a walking pile of crap. And I’ve got to lift myself out of the pity poo and get myself on track to be well.

When it comes to myself and Lyme, I need to empower myself. Instead of looking at all the work I need to accomplish, I need to think of it as a challenge to beat. Every time I am still able to pry my butt out of bed and cook lunch- I AM WINNING AGAINST LYME. Every grocery trip I make to buy 8 million more avocados but by golly I am doing it (even if I am limping or walking at a snail’s pace)- I AM WINNING AGAINST LYME.

It’s taken me a little longer to figure it out than I had hoped, but I think the determined side of me has woken up after a long nap. I’m ready to fight back. I’m ready to push my body and my mind to a brighter future for myself that doesn’t include lyme and feeling like hell all the time.

And all I had to do was look at the example set by my girls to see it.

That’s one dose of medicine I am more than happy to swallow.





What was I saying?


Bless it.

I had an amazingly entertaining blog post planned for today. And of course, I didn’t write it down. Which, in my current state, is basically the kiss of death for ideas.

The Brain Fog is strong in me. And not even the world’s supply of Ginko Biloba can help me out.

It’s a common occurrence in Lymie folk, this ability to forget everything at the drop of a hat. (Because clumsiness is a symptom too. Living with Lyme can look a lot like a live performance of the 3 Stooges.)

There you are, in the middle of a project or conversation and BLAM. You mind goes blank. Not like “I can’t think of a word” but like “What in the Sam Hill was I just doing?” And it’s INFURIATING.

I hate talking on the phone for this very reason. At least with texts and emails I can get a grasp of where I was heading, as long as I have already typed something. But in face to face interactions, I appear to be a mindless twit who simply wasn’t paying attention.

For instance, the other day I saw one of my friends at Meijer. It’s been a good year and a half since I’ve been able to hug his heck, and we stood there talking for a few minutes.

Now to preface this, I will admit to you that I DETEST wearing bras if I can avoid it. They require effort to put on and take off, and frankly, my energy is at a premium. I hadn’t planned on going to Meijer, just running to the dollar store, but DG didn’t have what I needed. So sweatpants, oversized tshirt and sports bra clad, I rushed into Meijer to grab the item. (Although for the life of me I cannot recall now what that item was.)

Ok, back to me talking to my friend.

We are standing there, discussing his recent career change into priesthood, about his life in Chicago and new significant other, when all of a sudden I feel one of my boobs fall out of the bottom of my sports bra. My boobs are big enough the sports bra really never stood a chance at providing actual support, but it was supposed to be a reasonable placeholder, if you will.

But there I was- standing in Meijer- with one boob in a normal position, and the other ballooning out a good 8 inches below it’s counterpart.

Immediately I went into panic mode, pulling my jacket around me like I had just experienced a cold arctic blast in the middle of housewares.

That’s when I realized every bit of conversation we had just partaken in had completely disappeared from my head. I couldn’t remember what topics we had already discussed. I couldn’t remember the name of his partner. Damn brain fog. Stupid lyme creating havoc in my head, making me forget what I was saying. The only words I could think of were related to my boob situation. “I’ve gotta fix me. DO SOMETHING.”

So hoping it fit into the previous line of the conversation, my mouth uttered the words, “I’m just gonna focus on doing ME.”

What? Weird.


But it seemed to not phase my friend at all, probably because I have a history of marching to the beat of my own drum. He just laughed, and agreed that was a good plan.

Of course that is good advice generally speaking, but had nothing to do with anything. And also, my boobs were still playing see-saw on my chest.

We finished up the conversation, with me awkwardly holding my coat closed trying to cross my arms to prop up the low boob, and eventually decided to go our separate ways and finish shopping.

As I walked away, he said “You just do you!”

And considering I had already slipped my arm inside my shirt, trying to discreetly hoist my boob back into the safety of my sports bra, I feel I replied honestly.

“I AM.”

The lesson I learned that day?

Choose your support system wisely. 

At least, I’m pretty sure that’s what I learned.

I can’t exactly remember…






Wait, I’m NOT Lazy?

4 years ago was when they started. These intense dark circles under my eyes, with complimentary bags. And I hated them. Every picture, every selfie, every time I passed a mirror, they were all I saw.

Along with looking like I belonged on the set of the Walking Dead, I felt like a zombie. I mean, I would sleep, but somehow it was never enough. I was tired and achy and all that jazz. I preferred watching TV to going out and being social. I skipped chores and took naps.

And instead of determining if there was an underlying health problem, do you know what I did?



Of course, having 3 active kids and attempting to be a wife and a person too- well, it takes a lot out of you. So there was that. But I saw other friends who seemed to handle it all. Laziness had to be a part of the problem, right? Because let’s face it. We are all lazy about something. I just assumed my something had branched out into everything.

I fought those words for sooooooooo long. I did my best to will my body not to be “lazy.”

On days when I was feeling energetic I would pack 6 weeks worth of time and effort into that 24 hours, which would lead to another week of feeling tired and exhausted. I learned to multitask like a beast and conquer the world in 2 hour intervals.

“Why are you so lazy?”

I still couldn’t shake that self-talk. More importantly, I couldn’t shake the NEED to be lazy.

When our oldest daughter got diagnosed with Lyme disease last summer, I went into hyperdrive. I mean I forced myself to be unstoppable. It didn’t matter that I was exhausted. I had to do the things that needed to be done. She was really sick in the beginning, and I took it upon myself to be her lifeline. She slept so much (and rightly so) but I still couldn’t get my ticket on the energy bus. Then when our second daughter tested positive for lyme, I knew we were all at risk (after a night stranded in the woods together several years ago in our local park) and I started putting the puzzle pieces together.

“What if you have lyme too?” 

Yeah, because that’s exactly what I needed.

Nevertheless, I royally screwed myself when one night, in the throws of exhaustion, I accidentally took a dose of the lyme killing meds I have instead of my herbal “super knockout juice.” Overnight, my body went from simply exhausted to exhausted and angry. My knees and ankles started swelling up, my wrist became so painful I had to brace it up to keep it from moving, even an inch. I limped along, waiting to get officially tested until after my performance at Laughfest. I drove to Michigan, and my “driving knee” was so swollen I had to use a cane for part of the time while I was there. (Because canes are totally cool, right? I can totally pull off being cute while using a cane.)

I lived in this quasi-state of acceptance and denial. I knew from the symptoms what I was dealing with. And I could say it. But my heart still blamed my own laziness and lack of motivation, leaving me in this interesting place of denial.

After returning home, I had blood work done, and waited.

When I got my CD57 test back, the results were SPECTACULARLY indicative of my issue.

Severe chronic lyme numbers are 0-20, I got a 17.

The “Natural Killer” cells (aka- lymphocytes) are supposed to be between 12-17, and I got a 0.6 which means my body is really struggling.

And all of a sudden, there was this huge emotional burden lifted off of my shoulders as the realization hit me…

“Wait, I’m NOT lazy? I’m actually sick?”

Seriously. The realization of what was actually the problem was paramount for me. It felt better than taking off my bra after a long day. I could breathe and not feel so bad. I could lose the guilt about taking a nap or struggling with achy joints I figured were the start of arthritis.

I can stop giving myself incredible amounts of shit and start showing myself a little bit of compassion.

There are lots of opinions about lyme disease and how to treat it. I’m not going to get into all that here. If you want to know more about the technical stuff regarding lyme disease, do what I did. GOOGLE RESPONSIBLY. I tried to cover some of the basics on my “about” page, and I even gave you a “glossary” that covers some of the terms I might throw in from time to time. (Scroll to the bottom of this post if you want to check it out)

What I will get into is my heart. Dealing with this stupid disease, and the adventures of my life. My attempt to remain a strong confident woman, who cares for her lymie family FIERCELY, and still remembers the importance of showering and shaving my legs on a semi-regular basis. Who cooks ALL the vegetables and doesn’t give 2 hoots about the perpetual broccoli farts I have. (OMG, they are awful.) Who attempts to be a source of laughter and encouragement even though my body often screams for sleep and advil.

I can’t help what the situation is. But I can certainly control how I handle the situation. I’d much rather laugh as much as possible and enjoy the journey. More importantly, to take the sting out of what I am facing, find some real joy (besides the pure unbridled joy of a nap) and figure out a way to make lyme suck less than it does.

Maybe one day I’ll get rid of these dark circles and bags under my eyes. Maybe one day I’ll feel energetic and it will stay that way forever. I’ve got a long way to go before that happens.

But in the meantime, I’m embracing the fact that when it comes to sleeping, I’m AMAZING in bed.