Monthly Archives: August 2016

From a Mother’s Perspective

Our family is no stranger to chronic disease.  Lyme Disease is a whole different ball game.  It is very difficult to wrap my head around invisible diseases.  I see my daughter as a beautiful, wonderful and vivacious young woman.  Lyme Disease is often called “The Invisible Illness”.  I have also learned that people with Lyme Disease will protect everyone, especially their loved ones, from the symptoms.  So, I warn you…..appearances are deceiving.  ‘Lymies’ will ONLY allow you to see what they want you to see until it is absolutely impossible for them.  Now, try to wrap your head around that and let it soak in.  I never knew the full extent of this disease until Lindsey was diagnosed.  Honestly, I became terrified and tried my best to hide it from Lindsey.  She was too smart for that! lol

As a mother, it is hard not to try and ‘fix’ or ‘make better’.  Nope.  Not this time.  Not going to work.  I will share a few symptoms Lindsey has shared with me.  1) Imagine your loved one telling you they were driving (to a place she drove on a daily basis) and got lost.  2) Imagine being told, “Mom. My brain was swelling so bad.  I thought my head was going to explode.”  3) I passed out at work. 4) I stood up and fell to the floor.  5)Her neck was SO hot to the touch all the time.   6) Imagine getting to the airport and realizing you are both at the wrong gate because your child is so confused and you didn’t realize it.  These are a few minor symptoms Lindsey allowed me to see.  Those symptoms were not minor to this mother.  This disease is unimaginable.  So many days and nights silent tears would fall while I was on the phone with her.  My heart actually hurt.  I have been told there will be some things I will read on this blog that I know nothing about.  Okay.  Kleex on standby. lol

I gave birth to Lindsey and she arrived with an unbreakable will.  I tried to break her will as a child and teenager.  Thankfully I failed.  I literally thought raising Lindsey would be the death of me.  lol  She is stubborn, hard headed, independent and determined.  I call these qualities attributes now and they have paid off BIG time in her fight against Lyme Disease.

People suffering with Lyme Disease need and deserve a fantastic support system.  I am not referring to just the medical staff.  Although, medical staff who understands Lyme is imperative.  A support system should not exclude anyone who will put words to actions.  Allow me to explain.  Don’t wait for a person with Lyme Disease (especially during treatment) tell you what they need.  If you think they need something don’t ask,  JUST DO IT.  They will either thank you or forget being mad (sorry Lindsey) at you for doing it.  So many times Lyme patients don’t need to be left alone during the darkest days of treatment due to the herxing.

Develop a support system that can be called at any time.  Support systems are vital to not only the Lyme patient, but also a huge help to the immediate family.  I can truly say when Lindsey’s husband said his vows for better or for worse he never saw Lyme Disease in their future.   Aaron has been by her side every moment.  I can not even begin to brag enough on him.  He has held her hand, wiped her tears, administered IV medications and fluids, oral medications, cooked and cleaned.  He has dealt with more vomit than I did as a mother to all THREE of my girls put together!  Aaron is worthy of a crown in my eyes!  I love him as my own child.  I have witnessed the love and concern he has for my Lindsey.  Then there is Joi.  Joi is a business partner to Lindsey, but more importantly her best friend.  There is no other person on this planet that could tell Lindsey the right side of her face was drooping and they both bust out into laughter.  Those two share a special bond.  I actually call Joi my fourth daughter.  Joi has witnessed far more symptoms than I have.  Joi once told me she thought she was going to watch her best friend die right in front of her.  I knew in that moment that things had gotten really bad.  When Joi  said she was afraid to leave Lindsey by herself….we went to our support system.  We called Joel.  Joel had begged me to call him anytime because he wanted to help.  Joel went and sat with her on many days and we are so thankful for him.

I wish I could clone Aaron and Joi for every person battling Lyme Disease.  I’m not quit sure this mother could have made it without them.  I am so thankful I share Lindsey’s support system with them, as a good support system is vital in the recovery when dealing with Lyme.  So, if you are dealing with someone you love battling this disease…….build a support system.  Stay in contact with each other so you all know the best needs of the ‘Lymie’.  Know that they can and will win this battle with Lyme.  ~T.J.

Knowledge is Power

IMG_4277I have experienced some pretty scary things throughout this journey.  Many symptoms people will never experience in a lifetime.  I can honestly say I am jealous of them because of the sheer fact they have never felt this stuff.  I never wish this on anyone.

I have been struggling to share this or not.  I decided it can only help those that are going through the same things.  So here you go…………  I have no memory.  None.  People ask me if its my short term memory or long term and I simply do not know how to answer that because it is ALL of it.  I don’t remember my childhood. I don’t  remember my wedding.   I don’t remember how my best friend used to smile before I got sick.  I don’t remember how I used to interact with my niece and nephews before I got sick.  I don’t know my role at work other than I own the place.  It’s the small things.  It’s the big things.  It’s everything.

I first found out that I didn’t and don’t  remember so much when my best friend was talking to me and she said, “Lindsey, remember when………” She told the story and I was trying really hard to remember, but I didn’t.  I only pretended I did.  After Aaron went to sleep I started silently crying.  I cried myself to sleep.  I thought, no way.  How could this happen?  No one prepared me for this.   Everyday I was meeting “new” people.

My best friend Joi and husband know me like the back of their hands.  It really is just as creepy as it  Imagine the most amazing, loving, giving, wipes my tears, holds my hand and is still HOT all at the same time……That’s my husband.  He is amazing.  Now imagine the most hilarious, beautiful, fun, giving, full of life and laughs at everything I laugh at person……………yep.  She is my best friend.  Every one has that one friend. She is more than “that” person to me.  She understands me on a level that I will be forever grateful for.

If these two knew nothing of my memory issues I was having, how were they supposed to help me.  By this point I have gotten pretty good at hiding certain things.   I am figuring out how to navigate through this and I think I am doing quite well with this particular situation.  Good news for you Lymie’s.  The things I can’t remember are not lost forever.  I will normally remember most things after a minute of someone explaining something.  Pictures have brought back a lot as well.  That makes me so happy.   Knowledge is power.  So let’s talk about how we can protect ourselves and the ones we love the most from this terrifying and debilitating disease.

I was covered in OFF Deep Woods when I got bit.  I am a magnet for mosquitos so I am ALWAYS covered in bug spray when I am outdoors.  My dad used to tell me they liked me so much because I was just too sweet. lol  I’ll go with that.  OFF Deep Woods only contains 40% DEET.  You need 100% DEET.  Put it only in key areas like your shoes, ankles, one spray on each arm and the top of your head if you are not wearing a hat.  Wear light colored clothing.  If you are wearing pants tuck them into your shoes.  Wear hats.  Ticks LOVE pine trees and will just fall down on you.  If you have been outdoors, do an immediate body and clothing check when you get back inside.  Knowledge is power when it comes to protecting/preventing any and all tick born illnesses.  The more awareness we raise, the more proactive we will all be in preventing this. ~Lindsey




Crawl Like a Champ


Lyme Disease can effect many different parts of your body.  I often get the question, “So does it just feel like the worst flu ever?”  No.  Just no.  lol  Hopefully by sharing this story, along with many others, we can spread some awareness. I want to shed some light on what Lyme Disease really looks like so we can better protect the ones we love most.

I have done a total of 27 months of oral antibiotics, 27 months of natural supplements and 7 months IV antibiotics since I have been diagnosed.  I experienced many pretty scary symptoms throughout my treatment.  Killing the bacteria (that have now taken over) causes what is called a Herxheimer Reaction.  While we are killing these things off, they release toxins in your body.  Basically, for us Lymies, whatever symptoms you had before you can now multiply it by about 3700 billion. lol  When we are treating for Lyme you will feel a whole lot worse before feeling better, but there is no other option than to treat.  The longer you wait before getting treated, the harder it is to get on top of.

One morning,  while I was on IV treatment, I went to get out of bed to stand up.  My legs immediately collapsed beneath me.  No warning.  I just knew I found myself quickly on the floor.  Did I cry?  YES.

It was the first time I was realizing just how bad it had really gotten.  I was scared I would just be somewhere and collapse.  I was scared of what that meant was to come.  I was scared that it would happen and I would never be able to use my legs again.  I’ll be honest.  They hurt bad enough that I thought that was a possibility.  I think the fact that it(collapsing) actually happened, meant no more denial for me.  I worried and worried about this and came to the conclusion that worrying wasn’t going to get me anywhere.  So the second time it happened I just laughed and thought, ‘Well.  I am crawling like a champ.’  I was forced to learn the true importance of not stressing and being upset about the things I couldn’t do.  Instead, keep my eyes ONLY on the things I could do.  I may not be able to walk but dang.  I sure can crawl. lol

My advice to anyone going through something that is super tough and doesn’t seem possible to get through…….Crawl like a champ.

Keep your eyes at the end of that tunnel even if the light is so small you can barely see it.  Progress is progress no matter how big or small.  Focus on all of the things that are great in your life instead of the negative.  Laugh.  There is humor in almost every situation.  You just have to be willing to see it to appreciate it. ~Lindsey

***A sauna is an amazing way to get those toxins out fast.  Sit in for as long as you can handle it and immediately rinse off when you get out and make sure you have someone there with you.***




Feed or Fight

What a journey this has been for me and my family.  I hope some of the things I have learned a long the way will be of some help to others.

Diet is a huge part in the recovery for Lyme Disease.  When I say recovery, I mean from the day you get diagnosed until FOREVER. lol I struggled with this in the beginning.  I thought that I could still have a little sugar everyday.  Oh boy, was I WRONG.  Sugar feeds the bacteria.  So when you consume sugar in any form  (including anything that turns to sugar after you consume it), you are literally feeding the bacteria.

I have always had a saying. “Everything you are consuming is either feeding or fighting the disease.”  It is much easier for me to stick to my diet if I keep this in mind.  For me personally I was told to be gluten free, no sugar, no alcohol and no processed foods.  At first this seemed a little overwhelming and not possible for me.  I mean lets be honest.  I have a donut obsession.  It was nothing for me to eat eight glazed donuts in one sitting.  You read that right.  EIGHT.  Not to mention I LOVED my wine nights with my amazing friends.  Trust me.  If I can do this, anyone can.

I now eat only organic foods from the grocery store.  We go to local farmers markets for our produce.  I don’t consume anything with very much sugar.  I try to be as gluten free as possible.  I feed my body with healthy anti-inflammatory foods.  My doctor once told me to stay away from “the center” of the grocery store.  Don’t even go down the isles where all the canned goods and such are.  That part of the grocery store is only filled with processed junk.   Only buy from the outer portions of the store like the produce, butcher and dairy if you can have it.  I know a lot of people with Lyme are dairy free.  I consider myself super fortunate to still be able to have dairy.  Doesn’t cheese make EVERYTHING better???

Am I saying you must to stick to this diet 100% of the time.  No.  This is real life.  For me,  it was about finding a balance.  To think I could never have sugar of any kind again or another glass of wine was just downright depressing to me. lol  I will have a few bites of dark chocolate a week and 2 glasses of wine (red because less sugar) per week or two.  98% of the time I am sticking to my diet though.  I feel my best (symptom wise) if I am consuming healthy things.  Fighting not feeding.

If you are just starting out with diet change or have been doing it for a long time like I have, just remember not to beat yourself up.  This isn’t easy or everyone would be doing it.  Start with small changes if you have to.  Progress is progress no matter what.  I promise the longer you are doing this the better you will feel.  Please feel free to ask any questions or comment your tips as well.