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.

AND THEN CAME LYME.

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.

But in ALL OF THIS…

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.

AND THANK YOU UNIVERSE FOR WINE.

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.

MY KNEES.

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.

AND THE SWELLING…

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.

I CURSE.

LIKE A F^*KING SAILOR.

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.

“FUUUUUUUUUUUUUUUUUUUUUUUUUUUUU…”

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.

“CK MEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE”

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.

“LUUUUUUUUUUUUUUUU”

“CKYYYYYYYYYYYYYYYYYY”

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.