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Get Ticked Off –Part 4: Be Strong

This is the final article in a four-part series on tick safety and Lyme disease. Read the first article “Be Aware” here, the second “Be Proactive” here, and the third “Be Reactive” here.

It’s been over a month since I posted, which is just embarrassing, especially considering I was in the middle of writing this important series.  However, the hiatus actually illustrates one of my key points better than I could have with words.

You see, over the last 36 days, I have been snuggling my now 38-day-old granddaughter.  There is no coincidence in those similar numbers.  She and her parents resided with us until just a week ago, and I was blessed to capture an intimacy few grandparents experience.  Unlike the exhausted new mommy and daddy, I was able to relish those late night cries.

There’s something about a newborn’s cry, isn’t there?  Knowing a diaper change or a little breastmilk is all that wailing child needs allows you to smile at her end-of-the-world, woe’s-me sobbing.  Our Hensley’s little tantrums are particularly unique.  She cries out like every newborn, but when she inhales, if she’s really letting the world know she’s dissatisfied, she makes this squeak, just like a puppy chew toy.  Truly, she’s a little squeaker.

IMG_6444Maybe this is just the way all new grandmothers are –so completely in love that even the grandchild’s crying feels cute, her neck smells delicious, and those blue eyes….oh my, I can’t find the words.

But I’ve done more than snuggle our little squeaker.

My girls and I initiated a 100-Book Reading Challenge, convincing about twenty other local families to commit to each reading 100 books as a family by the end of summer.  We meet every couple weeks at the park to exchange books and chat about our favorites.  Currently, the girls and I are on book number 64.

I repainted one of the bedrooms, preparing it for the return of my son and his then pregnant girlfriend.  When his little family moved out, I repainted the excessively large living room in their new apartment.  Now I’m working on redecorating their bedroom for my Pinterest-loving eleven-year-old.  Can you picture the gallery wall and DIY projects??

Every Wednesday we attend KinderGym, where Izzi flips and ta-da’s and gets my undivided attention.

My husband and I traveled to Virginia to celebrate a good friend’s 50th birthday by floating down the North Fork of the Shenandoah River, which we were told would be pleasant two-hour adventure.  Eight hours later, just as the sun dipped over the horizon, we finally arrived at our vehicles, ready for hot showers and pain medicine.

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There have been cook-outs and swimming, birthday parties and late night campfires, a crazy cat story and a litter of twelve puppies.  (More on that in a future post!)

The first weeks of July we spent five days and our wedding anniversary on our annual camping trip in Smoke Hole, WV.  This was the scene of the crime, the place where I was bitten by a deer tick and originally infected with Lyme disease two years ago, though I wouldn’t know it for months.  My family and about forty other campers set up our tents and canopies, then beat the heat by kayaking and floating down the South Branch of the Potomac River.  We ate deep fried everything, from fish to Twinkies, and sat around the campfire, laughing and telling stories.

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This has been my last few weeks.  I have been living life, something I could not have dreamed of two years ago.  After rounds and rounds of IV and oral medication, homeopathic treatments, dietary changes, acupuncture, massage therapy, blood oxygenation injections, and so much more, I am finally an active participant in my life again.

It can happen.

If you are a Lyme warrior, it can happen for you, too.

There were times along this journey I wasn’t sure if I would make it.  There were moments I was ready to give up.  The chronic pain affected every aspect of my life, including my cognitive processing.  I couldn’t imagine spending the rest of my life in that condition.  Though my family never complained, I felt like an incredible burden, requiring so much time and money just to survive.  Often I wondered if they’d be better off without me. The guilt was as heavy as the symptoms.

Thank God I hung on.

This illustrates my final advice in this series.  Be strong.  Keep fighting.  There is always hope.

Like me, you CAN get better.  

With Lyme disease, especially chronic or post-treatment Lyme, there is a tremendous lack of research and knowledge.  There are oodles of treatment options out there, but not one tried-and-true cure.  Because Lyme attacks our immune system, each person responds to the illness and, therefore, the treatments differently.  What worked for me may not work for you.  Lyme warriors, while typically fighting heavy brain fog and cognitive deficiencies, are forced to research the options and try treatment after treatment until something starts working.  Often the medical community is unequipped to properly advise us, so healing requires our own brain power, physical might, and, for me, spiritual strength.

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A strong support system is essential, especially if the Lyme warrior is straining to think, to comprehend what she is reading, to remember appointments.  I have been lucky in this department.  My husband was my everything, supporting every decision I made, every treatment I chose to chase.

So much support allowed me to be strong.

To keep fighting.

To believe there was hope.

You must trust that eventually something will start working and you will slowly return to life.  For me, there was a lot of trial and error, reading and researching, pain and tears.  But now I know what to do when I feel like I’m relapsing.  I wear a pain patch constantly, and it has been an absolute game-changer.  I know how to handle a seizure so as not to get hurt, but even more importantly, I know to get enough rest and to remove as much stress as possible to ward off seizures completely.  I listen to my body, and I try not to feel guilty when I have to lie down in the middle of the day.  I know I am not being lazy; I am recovering.

I remind myself to be strong.

To keep fighting.

To believe there is hope.

I know not to to overplan my week, to leave a couple days open for rest.  I know to avoid sugar, gluten and dairy because I will regret it later if I don’t.  I know nothing tastes as good as healthy feels.  There are activities I did before Lyme, like jogging and teaching full-time, that I’ve surrendered.  But even if this is as good as it gets, I am okay with it.  Life is full and wonderful, and in some ways, even better than my pre-Lyme life.

I am strong.

I keep fighting.

Because there is always hope.

There is life after Lyme.  It’s a different life.  That’s for sure.  But it doesn’t necessarily have to be a lesser one.  My experiences allow me to see everything differently.  I am more grateful, more aware, more empathic.  I am now able to see the good that came from this ugly disease, and I subsequently know it’s worth it.

For the first time in my life, I wouldn’t change my wedding day, tick and all.

Unfortunately, I’m sure there are readers who are thinking I’m lying or I’ve completely lost it.  Or you’re thinking I must not have been as sick as you are.  I promise.  I’m sane, truthful and chronically ill, but I am also active, content and managing my symptoms.

You may be in trenches, unable to see beyond the ugliness.  I’ve been there to.  I watched interviews with people who had Lyme disease and scoffed when they professed to appreciate their disease.  I read books and articles, hoping to find the answer, only to finish them disappointed.  I spoke with individuals who had beaten Lyme, but I couldn’t see myself getting to that point.  As long as I saw myself as sick, I stayed that way.  Once I was able to begin seeing some hope, I fought even harder and eventually attained wellness.

Be strong.

Keep fighting.

There is hope.

You can get life back.  It may not be your old life; however, believe it or not, it might be an even better life than you could imagine.  It’s critical that you have faith in this.

I know where I am right now is temporary.  I have a chronic illness, and by sheer definition, it’s not something from which I will ever be completely free. There will be relapses and flares.  There will be more pain and sickness.  But I’ve learned to live in the now, and right now, I am in remission.  I am not perfectly healthy.  There’s still pain and stiffness, but it’s tolerable.  I have been able to enjoy our summer, checking off our summer bucket list, making memories with my family.

These memories will help me get through the next relapse.

I will be strong.

I will keep fighting.

After all, when I hold my newborn granddaughter in my arms, I know there is hope.

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Get Ticked Off – Part 3: Be Reactive

This is the third article in a four part series on tick safety and Lyme disease.  Read the first article here and the second here.  This post is similar to a previous post, but with several critical updates added.  Please read, share, and DO THIS; it could save your life. 

Read this now. Don’t bookmark it to read later. Do not wait until you are in the midst of a crisis. Keep reading.

I want you to create a Tick Kit.

Yes, that’s right. A Tick Kit.

You’re probably questioning my sanity. She’s paranoid. She’s obsessed with Lyme disease.  Thinking something along those lines?

I’m not paranoid. I may be a tad obsessed, but I prefer the word aware. I’m aware because it’s real. It happens to anyone. Anywhere. Any age. And it is hell. A daily, living hell. If you are close to someone who has had battled Lyme, you get it. You’ve seen that crazy world, and you don’t want any part of it. You aren’t the person I need to persuade. You may skip the pleading in the next couple paragraphs.

I’m talking to the person whose little voice inside her head is whispering… We don’t live in an endemic area. We aren’t outdoorsy people. I am a healthy person; I eat right and exercise regularly. I’ve never found a deer tick on me or my child.

All of these excuses are invalid. Healthy people who don’t partake in outdoor activities, like camping or kayaking, and who live right here where you live HAVE been diagnosed with Lyme disease.

Or maybe you are thinking… I use a tick repellent. I check my kids regularly. We wear light-colored pants when in the woods. We shower as soon as we get home.

That’s great! I’m so thankful that you are taking precautions.

But keep reading.

Let’s imagine you notice a piece of black fuzz on your child. No big deal, right? Upon closer examination, you realize that the speck is actually a tick. It’s tiny. A fraction of the size of a wood tick. Time is critical.

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Every second that tick feeds on your child’s blood, it is potentially injecting her with Lyme or Babesia or Bartonella or other co-infections. Ticks usually don’t just have one infection. Tick-borne infections are zoonotic—meaning they are passed from animals to humans. “Vectors” like ticks, mosquitos and fleas transmit the diseases from animals like mice, rats, and squirrels to humans when they bite. Ticks can carry many bacteria, viruses, fungi and protozoans all at the same time and transmit them in a single bite.  They carry the infections passed on to them from their parents and those of every animal they’ve ever fed on.  There are so many co-infections, in fact, that scientists still don’t even know them all!

What do you do??

There’s no need to panic. You’ve read about tick removal before. While you take a minute or so to find this blog post or to google instructions, the tick continues to feed. While you look for tweezers, the tick continues to feed. The clock is ticking. No pun intended. What do you do?

You need a Tick Kit. The contents are simple: a pair of tweezers, alcohol swabs, a couple index cards or Post-it notes, a sharpie, and some clear tape tossed together in a Ziploc bag. That’s it. You probably already have these items in your home, right?
But do you know exactly where to find them? If your house is like mine, tweezers seem to disappear periodically only to return two or three at once a few weeks later. Would you have to race to multiple rooms in your house to locate these essentials? While you are searching, guess what the tick is doing. That’s right. Feeding on your child.

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I discovered these handy dandy tweezers designed specifically for tick removal.  I’ve used them twice this year to remove ticks, and they are ideal.  Any tweezers will work, of course, but the thin tip makes this the perfect tool for removing ticks, especially from the scalp, without leaving any part of the tick in the your child’s body.

Oh, and speaking of that child, what do you think she’ll be doing while you’re off looking for alcohol swabs? Yep, she’ll be freaking out because the tick is still in her leg. Even if she’s too young to understand the ramifications, she inherently knows ticks are universally gross and do not belong in her skin.

Please make a Tick Kit. Heck, make two. Prepare one kit for your home and one for your vehicle, especially if you’re traveling this summer. Seriously. Go. Come back and read the rest of this once your kit is together.

Ugh. You’re still here, reading away. Still doubting the need to do this immediately.

Alright, so what DO you do with that tick? (By the way, please don’t skim over this section. Don’t wait until you need it because, just like a scavenger hunt for Tick Kit items, you’ll be wasting precious time.)

1) Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible.

2) Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If this happens, remove the mouth-parts with tweezers.

Avoid folklore remedies, such as “painting” the tick with nail polish or petroleum jelly, or using heat to make the tick detach from the skin. Your goal is to remove the tick as quickly as possible–not to wait for it to detach.

3) Tape the tick to an index card or Post-it note. Write the date, time and location. If symptoms would later arise, this quick document will help doctors determine the type of tick, number of days since initial bite, etc. (I do this for all ticks, not just deer ticks.)

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4) Clean the bite area thoroughly with rubbing alcohol.  I also put Neosporin on the bite, but this is pretty much just to soothe my neurotic five-year-old.  It isn’t required, it doesn’t keep you from getting Lyme, but it mentally makes her feel better.

Okay, so we’ve removed the tick, cleaned the site and logged the event on an index card. Now what?

Monitor the site and the patient closely. Symptoms are generally not immediate and can present 3-30 days from the initial bite. Symptoms are often flu-like –fever, muscle aches, headache –and/or a bull’s eye rash. You do NOT have to have the rash to have Lyme disease, nor do you have to have every symptom. These are dangerous misconceptions.

You also have the ability now to send the tick off to be tested. Sending the Midcoast Lyme Disease Support and Education your tick(s) allows scientific researchers to gather data about ticks from all over the United States. Scientists can broaden their investigations into tick populations and glean information on the current distribution of the major tick vectors and the prevalence of tick-borne pathogens that people encounter in different locations. By sending them your tick(s), you are participating in a citizen science project and national tick-collection/testing effort which will enable these scientists to compare past and potential future distributions of ticks and tick-borne disease. Our hope is that by collecting this data, we may be able to predict where risk of disease is most common.

The tick can be dead or alive, but ideally collected less than 72 hours ago. Put your tick in a small Ziploc baggie with a moist cotton ball or piece of wet paper towel. If you have access to a small vial and alcohol, you can use that instead. Click here for more information.

Someone asked me once what I would do if I found a deer tick embedded in my daughter’s skin. I answered without hesitation. I would take her to the nearest urgent care and request treatment for Lyme disease. Does that sound paranoid? Probably. But after the years of pain I’ve been through, I would rather be overly cautious, giving my child one round of potentially unnecessary antibiotics, than to be hesitant, providing Lyme spirochetes more time to infiltrate her cells, tissues, joints, heart, and brain. Research has shown early antibiotics are consistently effective in treating Lyme, particularly when treatment begins within the first thirty days of infection. To me, a round of Doxycycline is worth the minimal risk, comparatively speaking.

Of course, this would be after I’d used my Tick Kit to remove the deer tick, clean the area and document the incident.

Think about it this way. We actively prepare for most negative events in our lives –life insurance, car insurance, flood insurance, home insurance, health insurance. Planning does not mean we want our house to flood or our teenage son to get into a fender-bender or our husband to spend an evening in the ER. We hope we never need to use our insurance, but we pay our premiums — just in case.

Talking about it and preparing for it makes us responsible. Not paranoid.

So, do me a favor. Go grab a Ziploc bag and throw together a little tick insurance.  Once you get it put together, snap a picture and share it at #tickinsurance.  Show me you’re listening and protecting your family by putting together a Tick Kit.

Just in case.

P.S. I’m hoping this is an insurance for which you and your family never, ever have to file a claim. XO!

In the next article, we’ll discuss what happens if you discover your symptoms too late.  What treatment options are available for those with Lyme disease?  Learn more in the final article in this series — “Be strong.”

 


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Get Ticked Off –Part 2: Be Proactive.

This is the second article in a four-part series on tick safety and Lyme disease. To read the first article, click here.  Please read, share, and DO THIS; it could save your life.

In the classic movie Jurassic Park, after watching a newborn velociraptor hatch and learning that the dinosaurs in the park are kept from breeding by denying them the chromosome required to create a male, the character Dr. Ian Malcolm, full of skepticism and awe, asserts, “Life will find a way.”

Lately, here in the real world, it feels a little like nature is finding a way…..to annihilate the human race.  Mosquitos have ascended on and condemned Brazil, making athletes and fans apprehensive about attending the 2016 Summer Olympics.  After all, is it worth possibly contracting the terrifying Zika virus?

Another new disease, called Powassan virus, found in New England, is like Lyme disease, but more extreme. Doctors believe it’s transmitted from ticks faster and most people cannot recover from it.  For example, Lyn Snow was bitten by a tick two years ago. She had symptoms similar to Lyme disease. But quickly, her headaches turned into hallucinations. Her brain was swelling. Within one week, she was in a vegetative state.

Bailee Wennihan, born in Kansas City, Missouri, struggled for five years to find a diagnosis while diseases and treatments caused damage to her body.  Wennihan first started to exhibit symptoms, including headaches, body aches and fever, after returning from a church camp in Tarkio, Missouri, in 2009 at age 13.  By the time she was officially diagnosed with West Nile and Lyme disease, Wennihan had damage to her hips and knees and had two strokes.  In April 2014, Wennihan was en route to St. Joseph to address kidney issues when her heart stopped. She was revived and put on life support, where she stayed for three months.  Following a seven-year battle, beautiful, vivacious Bailee Wennihan passed away at the age of twenty.

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“It’s not a crime not to know everything and not have all the answers,” her grandmother Teena Marks said. “It’s a crime not to try to get them. … Keep pressing for more education or someone else like Bailee will slip through the cracks.”

The bottom line is nature is finding a way, and we are not fighting back hard enough or smart enough.

It starts with me and it starts with you.

Do you know what steps to take to protect yourself and your family from ticks and other disease-carrying insects??  Do you use insect repellent?  If so, does it contain harmful chemicals, like DEET?  Did you know there are natural ways to protect your yard?

Please keep reading.

How to Protect Your Body

There are two main repellents that are recommended and are the only chemicals approved for use –Deet and Permethrin. When used together, they provide nearly 100% protection from ticks, mosquitoes, chiggers, fleas and other marauding insects.

Deet:  Deet repellents work by evaporation, creating a shield a few inches above the area of application. The presence of the repellent vapor confuses insects so they can’t locate a target host. In most cases it usually requires less than 1% of the repellent to form this protective barrier. It is the combination of this “evaporation delivery system,” and the base repellent you choose that determines how much repellent you must apply.

Permethrin: Although known as a repellent, permethrin is actually a contact insecticide. That is, it kills ticks or other insects that come in contact with it. Permethrin is considered ideal because it is applied to clothing, gear, mosquito nets and bedding and is not applied directly on the body. When applied to clothing and equipment, permethrin is very effective at reducing the mosquito population in your campsite or sleeping quarters by killing mosquitoes that “hang around” camp and land on things. Where ticks are a concern, permethrin on clothing or gear will kill ticks that travel across as little as 10″ of treated fabric. Spray applications of permethrin remain effective up several weeks and through weekly washings. Dip applications can remain effective even longer. Permethrin is harmless to skin and is used extensively in other formulas for treatment of head lice.

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Essential Oils: Natural alternatives for pest relief are in great demand. Essential oils are a popular choice, and some can repel ticks even if they don’t them. In 2004, Swedish researchers Gardulf, Wohlfart and Gustafson found that the mosquito repellent Citriodiol lessened tick attacks on people by 34 percent. The essential oils most commonly promoted as tick repellents include clove, eucalyptus, lavender, lemongrass, rosemary, thyme, and sweet myrrh. The CDC recently admitted that the essential oil lemon eucalyptus has been proven as effective as DEET, without the harmful chemical side effects.  Rose geranium is another oil with remarkable effectiveness, particularly with ticks.

In fact, I make my own tick repellant now.  (Obviously, I didn’t make it BEFORE I got Lyme or I certainly wouldn’t have this blog!)   It’s super easy to prepare.  Purchase a four oz. glass spray bottle available here at Amazon.  Combine 20 drops each of lemon eucalyptus, rose geranium, and DoTerra TerraShield, which contains a mix of powerful essential oils and other plant oils known to provide outdoor protection.  Top off with water.  Shake before each use.  This stuff really works!  The only downside to natural repellents is that they must be reapplied more often and are not waterproof.  Still, for us, playing in the yard, walking to the mailbox, hiking in the woods, it works!  If you’d like to order bottles of this pre-made tick and insect repellent, Attack-a-Tick, email me at jena.whiston@gmail.com.  Or if you have any questions about the recipe, shoot me an email.

It’s also important to apply your insect repellent the correct way.  Check out this video at PestWorld for step by step instructions.

If you’re going to be spending time in wooded areas or tall grasses, wear long pants, long-sleeved shirts and closed-toe shoes. Wearing light-colored clothing will make it easier to spot ticks. When hiking, do your best to stay in the center of trails, away from vegetation where ticks may be hiding and waiting to hitch a ride.

How to Protect Your Yard

Identify tick habitats around your home.  Deer ticks require a damp, humid environment to survive. Ticks are usually found:

  • In wooded areas and forest edges. These areas are the most common deer tick habitat.
  • Leaf litter.  Humid conditions found under leaf litter provide an ideal living environment for ticks.
  • Overgrown fields. These areas provide an ideal habitat for both ticks and their hosts.
  • Watch out for mulch…new mulch can introduce ticks onto your property!
  • Modify your environment by cutting lawns and removing leaf litter.
  • Keep children’s play areas away from wooded edges and tall grass. Deer ticks will not thrive in sunlit areas.

Make your yard less tick friendly by doing the following:

  • Clean up your yard and keep the lawn mowed.
  • Let the sunshine in. Sunny areas are less apt to harbor ticks.
  • Keep children’s play areas away from the wooded edge.
  • Remove leaf litter and brush from your property and perimeter.
  • Move bird feeders and wood piles away from your home.
  • Don’t forget about your pets. Consider a fenced-in area, run or invisible fence to keep pets away from tick habitat.  Be sure to use tick repellent for pets. (Also, there is a Lyme vaccination available for dogs. Talk with your vet to see if it’s right for you.)
  • Keep wood chips in your outside dogs bedding area.  Ticks hate cedar.  Lining your yard with cedar chips will serve as an outstanding boundary.

An unusual, new option to research and look into is Tick Tubes. Damminix Tick Tubes® reduce the risk of Lyme Disease by using mice as “couriers” to kill disease carrying deer ticks. This interesting solution consists of small tubes filled with cotton balls. The cotton is treated the mild insecticide Permethrin. To use it, simply place Damminix Tick Tubes® in areas around your yard where mice frolic. That’s it. Mice will do the rest for you by gathering the cotton to build nests in their burrows. Young ticks feeding on the mice are killed by the insecticide before they can spread Lyme Disease to you, your family and your pets.  Each mouse nesting with Damminix Tick Tubes® can kill hundreds of ticks each season. Studies have shown that Damminix Tick Tubes® actually reduces the risk of exposure to an infected tick by up to 97% on a treated property.

Certain animals naturally eat deer ticks. Deer ticks used to be found primarily in wooded areas of the northern United States, but the tiny bugs and the diseases they transmit are now in every state in the country. If you want to protect your yard from deer ticks, there are animals that can help you win the fight against them.  Read this article and see if this might be a viable option for you. In addition, wild animals are also helping us fight back.  Did you know the opossum eats 5,000 ticks per season?

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Finally, there are specific plants that serve as deterrents.  Strategically growing rosemary, chrysanthemums, fleabane daisy, mint, lemongrass, sage, and/or lavender are great plants to have in the garden, around the patio, or along the porch.  Read more at One Green Planet.  Plant any of these pest repelling plants (or a combination of) in pots to enjoy an insect-free patio or take indoors. Another useful way to keep plant leaves and flowers is to dry them, then crush them into small tabletop containers, or hang them intact around the house for pest protection with a pleasant scent all day long.

As you can see, there are numerous ways to keep you and your family safe.

You do not have to be a victim.

But what if, even after all these precautions, you find a deer tick embedded in your daughter’s skin?  What do you do?

Learn more in the next article in this series — “Be Reactive.

 

 


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Get Ticked Off –Part 1: Be aware.

It’s that time of year again.

Tick season.

Nearly every day, I receive messages from people frantically seeking advice after finding ticks on themselves or their children.  What’s their next steps?  I know they are terrified of winding up like me.  I’ve made my story so public; complete strangers are now aware that a tiny tick bite can destroy your life.

With this blog, I’ve always had the same purpose.

  • To teach you, my readers, that Lyme disease is a mean, horrific disease that can steal nearly every aspect of your life.  It isn’t something to dismiss.
  • To talk with you about prevention and how to keep from getting bitten.
  • To educate you on how to react to an actual tick bite, explaining the steps to take to prevent catastrophe.
  • To remind you to be grateful for your life, knowing we all have our own battles, big and small.
  • To make you laugh, here and there, because that’s what makes it all worthwhile –the laughter and the love in the midst of all this mess.

With those goals in mind, this is the first in a four-part series on Lyme disease.  For some, this will simply be a review.  For newer readers, this may save your life.  I vowed from the beginning that there must be some good in the hell I’ve been through over the last two years.

This is the good.  Teaching you.  Helping you.  Maybe even saving you.

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Part #1 — I already know about Lyme disease, and it’s not that big of a deal.

That’s what I used to think, too.  I remember my mother “checking my head for ticks” and occasionally pulling one off my body, but that was the end of it.  Ticks were gross, for sure, but I was completely clueless at how deadly they could be.

According to the CDC, it is estimated that there are at least 300,000 new cases of Lyme disease every year.  To put that in perspective, there are more new cases of Lyme each day than all types of cancer combined.  That makes you listen up, doesn’t it?

If caught early, Lyme disease can be treated with one or two rounds of the antibiotic Doxycycline and, generally, all symptoms are resolved.  However, many patients are like me –unaware of the bite.  By the time treatment began, I had been infected for over four months.  My first symptoms were extreme fatigue, shortness of breath, passing out with any exertion, and severe chest and back pain.  I was admitted to the cardiac unit of our local hospital with tachycardia.  If I stood, my heart rate climbed to 200 bpm; sitting, it plummeted to 38.  I was scared to death.  So scared, in fact, I had my attorney draw up a living will and medical power of attorney.  I felt like I was having a heart attack.

The CDC claims that only 1% of Lyme victims suffer from Lyme carditis.  I think this number is significantly higher in reality.  For weeks, I was in and out of the hospital with test after test being ran in a desperate attempt to figure out what was wrong with me.

To the doctors, I was a fascinating case.  I just wanted to go home and return to my normal life.

My doctor had a resident at the time who was particularly interested in my unusual case.  She would stop by my room late at night and we’d talk.  Like I said, my symptoms were fascinating.   She convinced my doctor to run a Western Blot, which is the test for Lyme disease.  We do not live in an endemic area, supposedly, but he humored her, allowing her to run the test.  It’s important to note that this, the only CDC-approved test for Lyme, is only 55-65% accurate.  With today’s technology, this is an unacceptable embarrassment.

Nonetheless, the test came back positive.  After consulting an infectious disease specialist, my doctor feared the results were a false-positive and he ran the test again.  Meanwhile, I endured a lumbar puncture to rule out meningitis.  The next day, the second Western Blot came back positive once again and Lyme spirochetes were visible in my spinal fluid.  Lyme had infiltrated nearly every system of my body.  It was in my tissues, my joints, my brain, my heart.

After almost two months of testing, I was relieved to finally have a diagnosis.  I had no idea that this was just the beginning of a long, painful journey.

Since that diagnosis, I have been on more than thirty prescribed medications.  I’ve had a PICC line and now a chest port to provide access for IV antibiotics.  I’ve taken dozens of supplements and homeopathic medications.  I’ve changed my diet to eliminate gluten, sugar and dairy.  I’ve been hospitalized five times and received treatment in the ER eight times.  I’ve gone from a wheelchair to a cane to walking on my own again.  I have seizures, headaches, severe joint pain, and facial palsy.  I require so many more hours of sleep than the average person, yet I still wake up tired.  I gained 50 pounds in the beginning, largely from the steroids, and then lost 60, largely from dietary changes.

I am just now able to be an active participant in my life and the lives of my children again.  I have to plan ahead for activities, resting for days before important events and sleeping for hours after, but at least I am part of life again.  My cognitive issues, fatigue and chronic pain forced me to resign from my teaching position, which was one of the hardest things I’ve ever had to do.  I never thought I would have to retire at the age of 39.  I deal with a lot of anger and depression over all I’ve lost due to this mean illness.

I grieve daily for the life I once had, and I work with a therapist to accept my new world.

Still, even with all this ugliness, there has been good.  I am a more appreciative person, acutely aware of my blessings.  I no longer take things for granted.  Lyme disease forced me to slow down and appreciate the little things –being able to submerge my whole body underwater when my chest port isn’t accessed, feeling well enough to hold Izzi’s hand during her school field trip, cooking a meal for my family.  I have kissed Death on the cheek, and in doing so, I now embrace Life wholeheartedly.  I have good days and bad, but even if this is as good as it gets, I can live with it.

Because my treatment started too late, I have chronic Lyme disease, which means I will most likely combat these symptoms for the rest of my life.

I tell you my story, the shortened version, to validate this series.  My story is important.  My pain is necessary  to save you from the same.  Now that you are aware of how serious Lyme disease can be, I hope you return to A Broken Crayon for the next post, in which I will discuss how to be proactive, protecting yourself and your loved ones from ticks.

 

 


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My Dad, My Superman

 

Father’s Day is a complicated holiday for me.  While it is supposed to be a celebration of the men in our lives, it’s often a day of regrets for me.  Cards and commercials force me to consider the choices I’ve made over the years and the permanent consequences of those choices –consequences my children must live with even longer than I will. After all, they are forever connected to the men I chose as their fathers.

My kids make it impossible for me to want to change the past, for without those choices, I would not have them.  But I do wish I had been more selective.  I wish they had the kind of father who is more of a dad than a father.  The kind you can call anytime and know, unequivocably, he’ll come rescue you.  The kind who accepts you as you are, even when his values do not mesh with yours at the moment.  The kind of father who never misses a soccer game or dance class.  The kind who grasps the importance of spending time together, who will drive 45 minutes one way just to take you out for an ice cream cone.  The kind who puts his needs below that of his children.

Don’t misunderstand.  My kids love their fathers.  I’ve worked hard to encourage their relationships, and I can honestly say I’ve never said a disparaging word about my ex-husbands in front of my underage children.  I want them to believe their fathers love them unconditionally.

But I wish it were easier.

I know firsthand how critical it is, for girls especially, to have healthy male relationships.  While I was blessed to be surrounded by strong women growing up, only one man was a constant in my youth.  My maternal grandfather died before I was old enough to even remember him.  My paternal great-grandfather was riddled with Alzheimer’s, and I vaguely remember visiting this man who had no clue who my dad was, let alone his granddaughter.

I am lucky to have a dad who would give anything for me and my children.  He’s the one who drove me to doctor appointment after doctor appointment over the last year.  He transported my kids to their extracurricular activities when I wasn’t able.  I could call him right now and say, “Dad, I need you.”  There would be no questions asked.  He’d simply say, “I’m on my way.”

If I ever need to hide a body, Dad is my guy.

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On top of this, he’s a saint to his grandkids.  He’ll spend hours just walking back and forth across the meadow with his grandson.  He keeps their pool in tip-top shape, sparkling clean and at the perfect temperature, not for himself, but us.  He’ll rock my sister’s son Grant to sleep for hours.  He’ll sort a bag of Jolly Ranchers just to have Izzi’s favorites, blue and green, in his pocket at all times.  When he picks Gracie up on Wednesdays to take her to dance class, he has a McDonald’s Happy Meal in her seat before she even gets in the car.  He looks at my sons, now both high school graduates, with a mixture of pride and awe.  As they hug him, I know he thinks the same thing I do; when did they get so much taller than him?

There is a song by Charlie Puth that seems to play every time I get in the car lately.  Each time I hear it, it bring tears to my eyes as I think of my dad.

 

“No matter where you go
You know you’re not alone

And when you’re weak I’ll be strong
I’m gonna keep holding on
Now don’t you worry, it won’t be long
Darling, and when you feel like hope is gone
Just run into my arms

I’m only one call away
I’ll be there to save the day
Superman got nothing on me
I’m only one call away

I’m only one call away”

He is my Superman.  My hero.  The man who serves not only as my father, but also as the one who picks up the pieces when my children’s fathers sometimes fall short.  He’s a bit of an anomaly –a Harley man who adores his little Yorkie named Pepper, a notorious “bad boy” who weeps during movies, a tough guy who is just as in love with my mom today as he was when she was 19.  Simply put, my dad is one of the good guys.

I am so grateful that my mom chose him all those years ago.

Happy Father’s Day, Dad.  Thank you for being so much to so many.  We love you.

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