Tuesday, August 5, 2014

It's LYME not LYMES!

One of my BIGGEST Lyme pet peeves is when someone calls Lyme Disease "Lymes Disease." Sorry, but Lyme is a four lettered word.  Everyone let's spell it together! L-Y-M-E! I don't know how many times I begrudgingly bite my tongue or pretend not to roll my eyes when I hear someone says "Lymes."  It instantly makes my spirochetes have a field day!  I am confused as to why people call it "Lymes Disease."  Is it because they assume I have other co-infections too?  Let's do the math.  Lyme + co-infections DOES NOT EQUAL LYMES!!!

Sometimes innocent people or family and friends make an honest mistake and just assume that Lyme is called "Lymes."  I feel bad because it is not my intention to make people feel bad, so when someone asks me how my "Lymes treatment" is going, I'll be sure to emphasize the word Lyme.  I try to get my point across without letting my inner Lyme Betch come out. Despite my best attempts though, sometimes people don't get my drift and "Lymes Disease" it shall stay.  

Why does it annoy Lymies so much when we hear "Lymes?" Well, because that's not the name of the chronic illness we are fighting! If our doctor can get it right, so can everyone else! I would love to know how this absurd trend started because I don't know any other disease where the name is pronounced wrong.  Maybe when a patient is diagnosed with Lyme, every doctor should say it's Lyme NOT Lymes. Well, progress has to start somewhere right?

Sunday, July 13, 2014

Supermoon = Super Hell!

It's bad enough that every month when the full moon happens most Lymies symptoms flare up, which is always so much fun...said no one ever! So what exactly is a supermoon? Obviously, it is a much larger moon and it is often brighter, but this is when the moon is closest to the Earth. So that's today's Astronomy lesson Lymies, and I hope you now understand the basics of a supermoon.  If you need more information on supermoons, contact NASA.  Instead, you can read
"What is a Supermoon?" from EarthSky.org

Truthfully, this whole "summer of supermoons" is a Lymie's WORST nightmare! This means two more months of "hell" and even worse flare-ups.  I don't know about you, but supermoons make me SUPER sick! It's bad enough, my symptoms worsen around the new moon and full moons, so you can only imagine how much fun it is to be writhing in physical and emotional pain during a supermoon.  Can we EVER get a break?! I would like to think so at some point but just when I try to be all "Polly Anna" and be a little bit more optimistic, I come back down to Earth and remember there are two more lovely supermoons to endure and survive this summer!

While the rest of the non Lyme or Spoonie world is all excited and taking pictures of the big, bright, beautiful moon, I feel like I am on my death bed, as I am sure most Lymies are this past weekend.  When family and/or friends who don't have Lyme ask how my weekend was, I feel like rolling my eyes and asking them to switch bodies with me like in the movie "Freaky Friday!" I feel like then people might begin to understand what it's like to "walk in a Lymie's shoes."  Could they handle all the physical and emotional pain Lyme and TBDs cause? Unless they are immune to pain or Deepak Chopra, the survival rate would be slim.  It's literally like we live in a completely different world! It's not fair and it's not right.  Supermoon, you win the betch award, and I know Lymies and Spoonies are NOT looking forward to the next two months of Supermoons! Personally, I would rather crawl under a rock and hibernate until this supermoon hell is done.

Thursday, July 3, 2014

10 Reasons Why July 4th is Nothing Special

1. It's Another Excuse to Party!
I don't know about you, but if I were feeling up to it, I would love the opportunity to be like every other American and celebrate America's birthday! Unfortunately, having Chronic Lyme Disease with multiple co-infections, I can't push myself and fake it.  It's just not worth all my symptoms flaring up even more.  I know one day my time my will come when I can "live it up" on the 4th, but for now I just have to accept my current situation.  Yes, it is a betch for someone to be home with their parents watching the Macy's fireworks on TV, but at least my mom is my best friend!

2. Tired of Endless Pictures and Status Updates Clogging up the following News feeds:  Facebook, Twitter, and Instagram
Social media FINALLY has added more features that allows you to modulate what you want to see and/or not see on your news feed because it be annoying and overwhelming! On Facebook, I don't know what I would do with the unfollow button and being able to customize my news feed.  If you look at my news feed now it's literally just a few friends, news sites, and my interests.  The BEST button invented that I am in love with on Twitter is the mute button! It is sheer genius! Bravo Twitter! Instagram is a different situation because people are in love with themselves.  How many selfies do you have to post in a day? With July 4th approaching, do I really want to see you with all your friends down the shore having fun, while I'm in bed or doing my IVs in excruciating pain? Not really. Yes, I often block or unfriend many people, but now I can understand why people end up getting depressed after looking at social media.  In the end, social media is a necessary evil!

3. Going to Fireworks is Actually like "Bombs Bursting in my Ears!"
Would I love to see the town fireworks? Absolutely! However, I would rock my wear ear plugs because I am so sensitive to noise.  If I am having a "good" day, I am going to try to go to them, of course thinking optimistically here. Trust me, there is NOTHING worse than the feeling of vibrations in your ears.  It is a Lyme nightmare! If I can't see my town's fireworks, I am DEF watching the Macy's fireworks! I'll have the best seat, my couch, and no ear plugs needed! It's a win-win situation! A very rare thing to happen for a Lymie!

4. Loud Music From my Neighbors Who Decided to Celebrate the 4th!
Do you really have to rub it in my face that you are having a party? It's bad enough when you do, there are cars lined up the entire block.  You have a gorgeous pool, a hot tub, a fire pit, and you are grilling food outside, I get the message loud and clear! It's party time! When the music is loud, I either listen to my Ipod with my Bose Noise reduction head phones, a MUST buy, and I often move to another part of the house in hopes I also don't hear the music as loud.  Usually my neighbors are pretty respectful, but it's the summer and a holiday weekend so you never know what can happen!

5. Swimming? Going in the Ocean? Um...Nope! Thanks picc line/port!
There's nothing that I love than swimming or floating in a pool or the ocean.  It is my happy place.  I am a LEGIT beach bum, but when you are battling Chronic Lyme Disease and have a picc line and a port that is accessed, swimming is out of the question! I know I can put my feet in, sit at the edge of the pool and pray no little kid splashes me, and even put part of my legs in the pool and/or ocean.  Let's face it, being a Lyme Chick is one tough battle mentally, physically, and emotionally.

6. I'm Way Too Tired and Forget About Driving Down the Shore
No matter how much sleep I get, I always feel lethargic.  I haven't driven in almost four years, and I know this might sound crazy, but I really don't remember some things about driving! It's pathetic. Watch I'll be 30 years old taking behind the wheel lessons again...um NO THANKS! Part of July 4th is going down the shore and putting my feet in the sand, takin a walk on the beach, putting my feet in the water, and just relaxing.  Of course I lather up on sunscreen because those antibiotics can make you sunburn easily and BADLY, especially Doxycycline.  It's what I lik to call the "doxy glow."  unfortunately, even if someone were kind enough to let me join them (like that's happening), I still wouldn't have the energy for the long car ride and hot weather.  In my head, I picture what it's like being normal, but my reality is vastly different because Chronic Lyme and the multiple tick-borne diseases I have are TRULY a betch!  Who knows, maybe Hurricane Arthur will get in the way and not a lot of people will be at the beach this year!  If you are, watch out for those rip currents!

7. Forget about Even Drinking...Virgin Drinks All the Way!
I'm really not into drinking, but it's the WORST thing for your spirochetes.  I know you say to yourself "one beer won't kill me," but really it's not worth the extra pain and aggravation those damn spirochetes cause our body.  Our lives are already a Lyme nightmare so order a virgin pina colada.  I know it's loaded with sugar, but if you are able to go out, you deserve a drink and should feel "normal!" Personally, I LOVE virgin coladas so I give permission for someone to have one or even a few sips for me. If someone gives you sass  about why you are drinking non alcoholic beverages you can say "I have Chronic Lyme Disease Betch!" Just kidding, unless you despise the person.  I would just keep it short and simple because honestly it is no one's business!

8. Look at all those sweet desserts! Anything gluten free and sugar free or at least low in sugar?
So you are at a BBQ and of course they don't have anything gluten free or sugar free! It's time to hit up some fruit! Let's hope someone made a patriotic berry bowl of strawberries and blueberries! Don't forget to eat some watermelon for a sweet treat!  My weak spot, especially since I have candida and parasites galore, are desserts.  It's like my brain goes into a carbohydrate, sugar induced coma! It's almost unfair when people bring in all these desserts from famous bakeries.  Of course it is SO tempting to eat even just a bite, but let's be real once you start it's so hard to stop.  My suggestion is this Lyme betches! If you are attending a party this July 4th, make your own gluten free dessert that is sugar free and/or low in sugar! Make this dessert so good that everyone else is jealous!

9. By all means celebrate America's Birthday, but how Many Patriotic Songs do you have to Play During the Fireworks?
I am all in favor that during the fireworks you have to play patriotic songs, but what becomes annoying is when during the fireworks, celebrities interject with "what America means to them." I would much rather watch the fireworks and hear the music than your opinion! I also hate it when they show the crowd watching the fireworks, instead of SHOWING the actual fireworks. I know it's precious when a father or solider is holiding his son/daughter and staring at the display over the Hudson River, but really can I please just watch the fireworks?  In terms of music, there needs to be a good mixture, of patriotic songs and modern day songs.  Of course they will play Katy Perry's "Firework," Taio Cruz's "Dynamite," but last year they played Usher's "Without You," which to me was a stretch! Who knows what kind of current music they will play this year, especially since Ariana Grande is on the list of performers, but I just hope it is decent!

10. Please don't dress in Red, White, and Blue! It's Cute on Little Kids and Pets Though!
I am all in favor of wearing something a little bit patriotic.  After all, it is a holiday.  By all means, get those $5 Old Navy Flag Tees and if you want, paint your nails red, white, and blue! You can wear anything and dress it up and make it chic! I'm just not a fan of someone who looks like they are wearing an American flag! What is ADORABLE, are little kids and pets dressed up in cute little outfits that show their love for America!

Friday, June 27, 2014

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!

Thursday, June 19, 2014

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!

Friday, June 13, 2014

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!

Wednesday, June 11, 2014

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!