TGIF...More Like Just Another Day of the Week

TGIF is probably one of the most overused acronyms, and in my opinion doesn't apply to a Lymie.  When the rest of the world is "getting ready to go out," I am trying to relax on my couch with a remote in my hand doing endless IVs watching the drip rate like a nurse. Plus, let's not forget that if your symptoms and/or pain is flaring up it's because of the new moon!  Well, you aren't going crazy, you can just blame the moon for ruining your Friday night. It looks like another movie night or catching up on some TV.  I know other people might think this doesn't sound so bad. Do you know how many times I hear, "You get to relax, while I had a week full of endless stress!"   Let's not even begin to compare a "normal" person to someone who is fighting a chronic illness.  That's just WRONG on every level!

                                                               

                           

Lyme is an invisible illness.  Lyme, is known as "The Great Imitator," because it mimics so many common diseases such as fibromyalgia, multiple sclerosis, alzheimer's, and even parkinson's!  Even though every Lymie's case might be different, there are often common symptoms that Lymies share like joint pain, brain fog, insomnia, encephalopathy, "fibromyalgia" pain, headaches that resemble migraines, excessive sleep, and lethargy.  This is why it is often very easy to form friendships online through social media with other Lymies!  As soon as you find someone who is similar to you, FINALLY you feel you are not alone anymore in this crazy Lyme world.  So on a Friday night when you feel all alone, send a text message, Facebook chat, Skype, or even call one of your Lymies!

It's almost as if Lymies are their own unique chocolate, sugar-free of course because spirochetes LOVE sugar, in a big box of assorted Russell Stover chocolates. Remember, as Forest Gump said, "life is like a box of chocolates, you never know what you'll get!"  It's true though, when you get diagnosed with Lyme, do you know what your tick will carry? We wish we could choose a tick without any co-infections, but that is rare.  It's bad enough that approximately 30 percent of people bitten by ticks carrying Lyme NEVER get the typical "bull's eye rash" and forget about being tested for Lyme because the Western Blot is often inaccurate!  If anything, when you compare symptoms with other Lymies, you sound like you are ordering off a menu. "Yeah, I'll have a #1: a tick with Lyme, Bartonella, Babesia, and Mycoplasma neumoniae vs. a #2: a tick with Lyme, Bartonella, Ehrlichia, Rocky Mountain Spotted Fever, Babesia, and Bartonella.  Do you see how many different combinations there could be with just one tiny bite?! It's absolutely CRAZY!  Let's not forget about parasites and yeast!

What isn't fair is how symptoms vary drastically among Lymies, specifically pain.  For example, I can't handle herbals, homeopathic remedies, and most pain killers except a pain patch, which is barely doing it's due diligence these days.  It truly boggles my mind how the same disease can debilitate some people and others can have minimal symptoms.  Is this fair?  Of course not!  What's worse is that some Lymie's are able to go out and push themselves to do things and be normal for a few hours, days, or even weeks. Yes, every Lymie deserves that moment when his/her symptoms are at bay to "live in the moment" and "live it up!"  The sad Lyme reality is that every Lymie is different, making Lyme Disease "so special" and extremely frustrating!

10 Reasons Why Summer is a Betch: According to a Lymie

1. Man it's hot outside! 
"It's too darn hot! It's too darn hot!" Sorry if I broke out into song, but who likes sitting outside or even in a car going to doctor's appointments when it is 80 degrees or higher outside?! NOT ME! Granted my joint pain feels slightly better in the warmer weather, but you won't see me being a "happy camper" in the summer screaming "I'm pain free!" No one likes sweating and feeling gross, when it's really hot outside!  If you have a picc line or a port, the WORST feeling is when your bandage starts to itch from the heat!  It feels like worms are crawling under your skin! I suggest putting an ice pack near the picc/port site.  This ends up numbing the surrounding area.

2. Inability to go swimming with a picc line or when your port is accessed
Part of summer is going swimming in a pool or floating in the ocean!  I am a beach bum and don't get me wrong, I love sitting watching the waves under my umbrella, but when you're sweating and you can't go in the water because you have a picc line or your port is accessed, it's not the idea situation. Yes, you can put your feet in and even your legs in, while making sure your picc/port site won't get wet.  If you're daring, you can even float on a raft in a pool, but I wouldn't risk it!  It's hard when you see everyone else smiling, laughing, and being normal without a care in the world, when you are trying not to lose your mind from heat stroke. (Mother's voice chimes in "drink plenty of water!)  I know my picc line is my "highway to health," but it's so hard in that moment and not wish that this was a bad nightmare!

3. Everyone else is having fun, while you are home in pain
The worst part about summer is everyone is taking pictures and "selfies" of all the fun things they do, especially on the weekend, like going to the beach and attending concerts.  It's horrible how Lyme literally just took over my body and made me into a couch potato.  Who wants a life like this?! Yes, I know "what doesn't kill you makes you stronger," but it is nearly impossible not to be jealous of people who get to have fun, especially when you're home writhing in pain, lethargic, and doing endless IVs.  What I wouldn't give to be pain free for even just a half hour or a few minutes, but Lyme doesn't seem to give me any kind of a break these days.

4. Your summer attire consists of comfy clothes and not chic summer clothes
My attire consists of comfy yoga pants and a t-shirt, but once it becomes warmer outside I'll upgrade to comfy capris or shorts.  I love looking through Lucky and other fashion magazines and seeing what the latest trends are, but of course I don't buy anything because where would I wear it...a doctor's appointment?! Don't get me wrong, I will buy cute shirts from Abercrombie & Fitch, on sale of course, because I want to feel somewhat "normal," and on a "good day" I'll even wear a pair of jeggings.  Lymies, jeggings will be your best friend because they are soft, stretchy, and feel like leggings! The brand I wear are Levis, and if you buy them at Kohl's with a coupon then they are much more reasonable!

The one thing that I do ROCK in the summer are a pair of big sunglasses and flip flops! My best kept hidden secret for those who suffer from plantar fasciitis are wearing sandals from the following brands:  Orthaheel and Tony Little Cheeks.  Both of these shoes have great foot beds and are a little piece of heaven for my feet!  Orthaheel actually has a built in orthotic in the shoe! The brand has tons of cute, chic sandals available! Even though they are pricey, it is worthwhile to buy a pair because your feet will thank you, especially your arches! You can buy Orthaheel at QVC.com.  Now I know what you're thinking...Tony Little makes shoes? You bet the man who rocks the hat with the pony tail does, and his flip flops are also reasonable at HSN.com.  The pair below is a great buy because you get two for the price of 1!  Your feet will definitely love the gel arch support and the summer fun colors! http://www.hsn.com/products/tony-little-cheeks-healthy-lifestyle-sandal-2-pack/7417417
Don't forgot to wear sunscreen and a cute hat to protect yourself from the sun!

5. Changes in barometric pressure
If you ever saw "Mean Girls," I am like Karen Smith, Amanda Seyfriend, because she can predict the weather, except her breasts can tell her when it's going to rain.  In my case, I get a bad migraine, my knee starts to swell, or other Lyme symptoms worsen, that usually means rain is on the way or it's about to rain.  Crazy enough, most of the time I am right! At least I know when my symptoms are flaring up, I'm not losing my mind!

6. Why is it so Humid?!
Nothing is worse than 100% humidity! Besides your hair turning into a giant mess, who wants to feel all gross, sweaty, and sticky?!  When you are outside, who wants to feel like they are in a sauna?

7. Thunderstorms
My favorite nature sound is rain, but once it starts thundering and lightening, I pray we don't lose power!  When it rains, it usually means cooler temperatures are on the way! Yes, at times it sounds like Mother Nature is bowling because the thunder is so loud! I'll admit it, sometime I even get scared a little bit, but who doesn't from a thunderstorm at one point or another?

8. Power Failures
Nothing is worse than a power failure in the summer, especially during a heat wave! However, if you rely on a refrigerator to keep your IVs cold, then a power failure is your WORST nightmare. Plus, try doing your IVs with a flash light!  It's a bad comedy!  Let's hope this summer we don't have too many power failures! Maybe Mother Nature can cut us some slack because once it gets too hot in my house and you can't put on the air conditioner, it feels like the world is ending.  I use battery operated hand held fans, and I try not to let my inner diva come out, but no one especially when you are in pain wants to be in a hot, humid, powerless house!

9. Ticks, Mosquitoes, and Bees, Oh My!
Well it's that time of year again when the ticks are out on the prowl!  When you have Chronic Lyme Disease and other tick-borne diseases, the LAST thing you need is to be bitten by another tick! You try not to become paranoid but at times when you see a small bug you can't help but think TICK!  In order to avoid being bit by a tick, here are some tips you can follow! Be sure to read this article from the Huffington Post! I would also suggest an all natural deer tick repellent that is Deet free, such as Botanical Solutions Tick Guard No Deet Tick Repellent Spray.

Besides ticks, there's annoying mosquitoes and bees! Enough with the insects that bite already! Can't we just be left alone! I highly suggest wearing some type of all-natural mosquito repellent like Burt's Bees Herbal Insect Repellent.

10. Your backyard neighbors are having a BBQ and blasting music
Summer is about having BBQs with family and friends and enjoying the warm weather.  However, NOTHING is worse than when your neighbor is having people over and decides to blast music. Since I am sensitive to sound, (thanks Lyme!), when the music is played, I can literally have a dance party in my room and recite the lyrics.  I normally wouldn't mind the music, but I feel the vibrations throughout my body.  Usually, these little shindigs occur around July 4, but of course any day is fair game on the weekend, especially when the weather is nice!

Bartonella, Why are you such a BETCH?!

If Bartonella (Bartonellosis), a tick-borne disease, could talk I think it would be Regina George from the classic movie "Mean Girls."  First, if you haven't watched this movie, the next time you are Herxing or having a pajama day, watch this high school drama filled comedy.  I don't want to spoil any surprises for you, but Regina George is the "Queen Bee" of the popular clique in high school called the "Plastics."  She is a complete betch from head to toe, basically your typical social dictator.

Bartonella, also known as "cat scratch fever," in my eyes is a TRUE betch!  This nasty co-infection is mean and literally has a mind of its own!  When its symptoms flare up, Bartonella likes to makes its presence known! It's like "here I am! I'm here to make your life miserable! Get ready for hell!" Everyone can flare up differently from Bartonella, but when I talk to other Lymies the one thing we all complain about is the stabbing pain in the arches of our feet!  I would probably only wish this pain on my worst enemy and the CDC, until they change the treatment guidelines for Chronic Lyme Disease.

Bartonella also LOVES playing head games and can make you feel even crazier, especially by worsening your anxiety and anger.  Now, here comes the fun part!  If you ever heard of the term "Lyme rage" you can thank Bartonella for literally driving you NUTS!  What is "Lyme rage?" You can thank it for its several neurological and psychological effects.  I like to describe it as EXTREME anger and irritability.  You might feel like giving up, depressed, completely "out of it," cry often, and sometimes even get physical.  Remember, it's not your fault this is happening to your body. Here, you are following a protocol to get better and because of all the die off, all these wacky side effects occur that make you look like a crazy person!

Honestly, when you feel these symptoms flaring up, it's REALLY hard to turn the "off" switch in your brain, especially when you know it's not your fault.  Personally, with the unrelenting foot pain in the arches of my feet, excessive anxiety, increased vibrations throughout my body, projectile vomiting (completely gross), migraines galore, and insomnia, I feel like I am OFFICIALLY losing my mind!  How could you not?! So as the movie "Mean Girls" asks, "how many of you have been personally victimized by Regina George?"  My answer is Bartonella is bullying me currently, but this co-infection might be trying to take over my life no matter how hard I try to eradicate it!  However,  I'm not letting this betch win without a good fight! Sorry Bartonella!

Full Moon on Friday the 13th?! Disaster or Just Another Ordinary Day?

It's bad enough that EVERY month the dreaded full moon flares up my lovely spirochetes and makes me feel even worse.  While everyone else looks at the moon and  "Instagrams" how beautiful it is, I actually circle on my calendar when the dreaded son of a betch full moon comes every month. I know, that's normal...right?! At least I know I'm not going crazy though, especially when my pain worsens and when I become an insomniac!

So this Friday, June 13, is another full moon, but in particular, it's a very special one because it's happening on Friday the 13th! This won't happen again until 2049! Savor these memories this Friday, since this is an extra "special" full moon. I say take a "selfie" or have a full moon party!

Anyway, as the pain begins to flare up a few days before the actual full moon on this gloomy rainy day, I did a little research on Friday the 13th superstitions.  Personally, I am not a very superstitious person, but I was curious about the history behind Friday the 13th.  Here's a great article I found from Wales Online that explains why some people avoid this day like the plague! Will the full moon be any worse because it's on Friday the 13th?  Who knows, but personally, I won't be hiding under my blanket all day and afraid to walk outside! I'm definitely not afraid of a black cat!