The One That Makes My Heart Race

When you live in a place like New York and LA, you see celebrities, you even party with them sometimes.  It's something that happens and it's no big deal.  I've met Kevin Spacey, Tommy Lee, Laura Peppon, Kim Cattrall, Elizabeth Shue, talked shit to Parker Posey, parted with Johnny Knoxville. Waited tables on Andre Agassi, Shannon Doherty, the Culkin brats, Doogie Howser.  I've seen Rebecca Romijn, all of the That 70's Show cast, Lindsay Lohan, one of my favs Nicole Richie, Frankie Muniz partied like a rock star, Matt Damon, Ellen DeGeneres totally checked me out, my heart throb Ethan Hawke, (pre, cheating on Uma with the nanny, who cheats on Uma?!), Brad Pitt, a few models.  The list goes on, but nobody made my heartbeat pound the way it did at my local Saturday farmers market.

You're never going to believe who gave me this flower!

Living with Lyme disease in Bellingham, WA there aren't many options for support, nobody truly understands what I am going through, let alone even knows what Lyme disease is.  In search of someone to relate to, I began seeking out support groups through social media.  But what has actually happened, is that I am being reminded 24 hours a day that I have a disease.  There are constant reminders that I have Lyme Disease.  I'm one who wants to live life, and do the things I once did, only better than before, not sit home and be reminded of my Lyme!

The constant daily messages and posts become less about hope and more about misery, it can be a bit of a bummer.

I strive to move forward and I don't plan on being ill forever.

I have the knowledge and discipline to get better.

Now is the time to focus on success stories, the well, and hope!!

My celebrity, the one who makes my heart race, my inspiration, and where I find my hope is Olympic athlete Angeli Vanlaanen.

We got this...I'm herxing really bad here, from Cat's Claw

After my demanding of lab tests, multiple naturopathic doctors, a few regular doctors, being diagnosed with multiple odd things that I refused to believe, my persistent research, and determination to find out what was wrong with me, I had learned enough about Lyme to self diagnose myself with it.  But there was always that:

No, not me?!

That really wasn't a bulls-eye, was it?

Did I see a tick?  If that was a tick, that shit was tiny.

Wait, doctors and vets, tell me Lyme isn't in Bellingham.

There was denial until I watched Angeli Vanlaanens Lyme video.  I had a change your life forever kind of moment,  my heart sank, I cried, and I cried, and I still cry, every single time I watch this video. 

To this day the movie gives me an undefinable feeling, it's an emotion that's going to make me a phenomenal actress.  Every single thing she says, I had said to myself or others at some point in time.  I had Lyme.  Sigh, off to get blood drawn for IGeneX.

Please take a moment to watch her video:

https://vimeo.com/65479794
Learn more about her here:
http://angelivanlaanen.com/
And here's my first Public Service Announcement to spread awareness:
http://genero.tv/watch-video/39744

I was so unbelievably lucky enough to meet both Angeli and her mother Allain!!!!!  Permy smiles were all up on my face, the whole time.  When I asked Angeli how she was doing, she says she feels great, but the emotional scars take the longest to heal.  I get it.  It's not just the physical pain you have to recover from, it's the emotional trauma of everything endured on your Lyme journey.  Angeli was really sweet and happy.  She radiated sunshine and gave me a flower.  I was giddy all day, until I broke out in another herx rash ;)

Her mother is a peach and my heart pounded just as hard.

Thanks Angeli for being an inspiration for myself and others with Lyme Disease!

My repeat song of the month.

One Year Ago Today

*The last two and a half weeks, Lyme has been kicking my ass, it all started with the side effects of Rifampin. That drug knocked me on my ass, I had to stop taking it due to the extreme fatigue and nauseousness.  Food was hard to tolerate and it literally gave me narcolepsy.  During times like these, I try to remember all my symptoms that have dissipated, and the moments when I feel great. A year ago, I was at my absolute worst, so scared, confused, and sick.  Today, there is progress and I'm fighting hard to regain my health.  I want to get better, in every way :)

One year ago today, I left work in tears because my eyes had swollen yet again.   One year ago today, I would find myself curled up in a ball on the floor in hysterics.  What is wrong with me?!  I couldn't take it anymore.

This was my rock bottom, not months later when my world fell apart.  My rock bottom was when this illness was at it's absolute worst.  Yet the people closest to me were in denial.  I was dying, every part of me had been taken away.  I traveled to Maine a year ago, from Washington state.  Travel was always ridiculously hard for me to do.  Making travel plans, immediately put me in a state of anxiety, because I knew half the battle would be getting out the door.  Airplanes hurt my joints and made me retain water for days.  I felt horrible while visiting Maine, I did everything I could to try to be normal, but normal was something I just couldn't be anymore.  I ended up in tears on the last day, hours from having to go back to the airport, on 3 hours of sleep.  I just couldn't bare the thought of what the next 24 hours of travel would look like.  My body was shutting down and I didn't think I could physically make it back to WA.  I wanted to be left in the hotel room for dead.

One year ago today, my brain wouldn't allow me to write or read.  Going outside caused horrible allergies, and eating food would result in swollen eyes, stomach pain, and rashes all over my body. Work became difficult, because I found myself slurring my speech, losing my train of thought, and forgetting simple things I'd known for years prior.   It was hard to see, because my eyes felt like they constantly had dirt in them and my vision would come and go in blurs.  New and scary symptoms began appearing daily, preventing me from socializing.  Overall, I was in so much physical pain, and mental distress, I could barely leave the house.  If you go back to this blog below, you can review my symptom list.  The list had reached it's maximum and my body had shut down. 

http://brewlifewithlyme.blogspot.com/2014/10/okay-turns-out-im-not-so-well-ish.html

Looking back to a year ago, a lot has changed, in fact my entire life has changed.  Parts of it I don't even remember.  Symptom wise, there has been a great amount of change.  Here are some things that have improved from a year ago, when I was at my absolute worst.

Last year my skin looked like this:

I had melasma and brown spots all over it, I hated it, it made me very self conscious and gave me anxiety in public.

Today it looks like this:

This was not achieved by Hydroquinone, or any prescription lightening products used to erase dark sun spots.  This was achieved by killing Lyme bacteria.  So hey, dermatologists out there, maybe try to find the source of the problem, and not try to tell me to throw some shitty cream on my face.  I knew even going to visit mine was going to be a joke.

I had a hugely painful, swollen joint that came after eating dinner one night.

I was told I had the beginning stages of Rheumatoid Arthritis????  Hmmmm, not really sure that exists.  I even went back after my Lyme diagnosis to tell the doctor it was Lyme, like I suspected, and she gave me a pamphlet to read about a new RA drug that was on the market.  Are you kidding me?

Today, my hand looks like this:

-Outdoor allergies diminished.  Yes, I am talking about the girl who could no longer ride her bike because her throat would swell, or ride with the car windows down.   I went to my allergist one summer and he did a scratch test on me.  The nurse got so nervous watching my back, she ran and grabbed the doctor, he immediately had me take benedryl and told me my immune system was going crazy, but he didn't know why. I informed the office staff of my diagnosis later, and I can only hope he learned why the immune system may be "going crazy" on people.

This is before things got too out of control.

-My thyroid is officially balanced!   I worked extra, extra hard at the gym, while living with Lyme and never saw any results, now I workout way less, and can see my body change daily.  Another side note, for anybody who doesn't see results while working out.  Go get your thyroid checked! Including t3,  most doctors never check t3, that's what was off with mine.  Also, when your readings are on the low end of the shitty, "scale" doctors go by, find a naturopath who will get you on some thyroid meds, it will change your life.  You do know that the "scale" system doctors use is a bunch of bullshit, from symptom data years and years ago.

-My hair is almost back to normal!  It was severely damaged 3 years ago, and could never bounce back.  I had to wear clip-in extensions.  For the first time in 3 years, I can leave to house without my fake hair in. Woot woot.

-The big food test.   I've been pretty hungry since getting off Rifampin, I can eat large quantities of food lately, and my body is craving things like grains, that I normally do not eat.  Generally, this would be a big problem...but lately, I've been experimenting with more foods, and taking risks at restaurants, with no ill effects.  Throughout the past  5 years I've come to expect swollen eyes in the morning, stomach pain, and bloating if I eat anything out of the ordinary.  This has not been happening lately, so I'm thrilled that there will finally be more foods rotated into my diet!!

-85% muscle pain free.  Muscle pain was one of my first symptoms, my entire body was on fire, and I had knots all over.  My skin hurt, and if you touched me anywhere, it would feel like a bruise. There were many sleepless nights with back pain.  Yes, some may say that was the Fibromyalgia, but not me, I knew that it was just a symptom of something much bigger.  Currently, I only get some pain in my upper back and neck, on and off.

-No more anxiety.  I didn't have anxiety on the list, but boy was I living with Lyme related anxiety. I've calmed down quite a bit in a year.


-Brain Stuff.  There is still brain stuff going on, but it is much better now.  I may have a flair with treatment and herxing, but for the most part my brain is ok.

With treatment I do still have herx reactions that bring some symptoms out and make for some bad days.  For example, muscle twitching, heart palpitations, light and noise sensitivity, headaches, dizziness, brain fog, tingling in fingers, and eye problems.  This is to be expected with treatment and herx reactions.  But overall, things have gotten better, I don't feel well yet, but there are good days :)

Every time I go to the doctor, she asks me what my top three symptoms are.  I'd say as as of today:

1.  Neck and back pain
2.  Eye swelling and irritation
3.  Brain exhaustion.  This one is hard to explain, but it feels like you are functioning on no sleep, but you slept 8 hours.  My body is awake, but my brain checked out, kind of feeling.  It sucks!

Everything else has pretty much diminished, unless it pops back in for a herx, or for just a day or two.
Now that's pretty good, considering my symptom list from a year ago!  So Lymies out there, remember, there was a period where things were much, much worse. It will get better with time, and treatment.  If you're at your rock bottom, I'm here to give you hope, that things will get better.  I have to remind myself of this DAILY, in order to get up in the morning, and remain positive, in my thinking.

Here is an updated treatment video, minus the Rifampin, that has now switched to another Bartonella killing drug.  I'm going to make a video on my horrible experience on Rifampin soon.

Sometimes you just need somebody to tell you everything is going to be alright...But that's for my next blog.

Thanks for reading
-Becky

My Bright & Happy Future

I'm waiting for the day when I get the all clear from my LL.  People say you never fully recover from Lyme disease, even Dr. Richard Horowitz, one of the leading doctors researching and treating Lyme disease. The key is to get your immune system to function at a level where it can keep the bacteria under wraps.  So you are then able to have your symptoms under control and fight the disease naturally, without medication.

   You go into REMISSION.

The scary word that I've been neglecting to talk about.  I truly want to presume that all the lil fuckers are gone, but the truth is, nobody really knows.

This is a really great book written by Dr. Richard Horowitz. 

http://www.cangetbetter.com/

This book is meant for doctors to read, but anybody who struggles with their health should read it. There are a lot of people being diagnosed with mystery illnesses, such as Chronic Fatigue, Fibromyalgia, ALS, POTS, MS, Multiple Food Allergies & In-tolerances, Thyroid disease, Psychiatric disorders, Rheumatoid Arthritis, Lupus, and other Autoimmune conditions.  If you have been diagnosed with any of these or have symptoms that mimic these conditions, there is a good chance you have Lyme disease or a co-infection of Lyme.

One thing I know is that I can do everything in my control to kill bacteria and once I am in remission, continue doing those things, forever!  My LL is a freak about it, she had Late Stage Lyme disease herself, about 10 years ago.  I know she's doing well today, because she is running a very busy practice in Seattle, and you can't do that with Lyme bacteria thriving.  You know what else she does?  Takes really good care of herself!  She continues to eat healthy, keeps her body alkaline, and takes the necessary steps to NEVER, if one bug was left, let it thrive and spread.  I am going to be the same way. Taking great care of myself prior to my diagnosis was a priority, but Lyme has taken my health to a new extreme and that's something that will always stick with me!

I've begun to start planning my new Lyme free future!  I have so many exciting things I want to do.  I have been sick for 5 years, treatment could last another 1.5-2 years.  I've been feeling better so I'm already going to get the ball rolling, and here is what I'll be doing to better myself during the remaining parts of my treatment:

1.  I'm going to start taking classes toward my new major of choice.  I contracted Lyme about the the last quarter of my schooling for my associates degree.  Even though I was able to take a few classes after that, it really put school on the back burner.  When you can't read a sentence, how do you continue with schooling?  What's fascinating, is that while sick for 5 years with Lyme, I was able to recognize what I am truly adept at... And guess what?  There is no science and math involved!!

2.  I'm going to focus on myself.  I always thought I was an independent person and I am in many ways.  One thing has always eaten at me though...I've relied on people in my relationships too much.   I want to be self-sufficient.  Nothing can set me up for this more, than what I've been through over the course of the last 6 months!  

3.  I want to fall in love.   Romantic is a word that does not describe me, nor is it in my vocabulary, but Lyme disease has given me a great amount of love.  A love for life that I have never had before, and why wouldn't I want to share that with somebody?!  

4.  I am going to work on me from the inside out.  Healthy foods, trying new forms of exercise, making new friends, being alone and being ok with it, helping others, making change, remaining positive, trying things that scare me.  I am going to be open and receptive to this world and all that it has to offer me. 

5.  Get strong!  As strong as my body will allow me to get.

6.  Keep only the people who deserve to be in my life...in my life.  To hell with the others, life is too short. 

Okay.......Here is what I'm gonna do when I get the all clear

1.  Go to Hawaii!  Vacation is not in my vocabulary nor is it something I've done in 12 years.  So you can bet as soon as I'm feeling 100%  I am going to Hawaii to celebrate.  Or maybe travel across Europe?

2.  Move.  I have no idea where, but moving from Bellingham is something I've wanted to do since arriving in Bellingham 8 years ago.

3.  Get new headshots, get an agent, and get back out there in the acting world.  I dislike seeing my Lyme symptoms on my face in my current photos.  I've got quite the acting resume built,  it's now time to see what other challenging roles can be added.

Tan

Not so tan

4.  Continue to advocate and spread awareness about Lyme disease.   I'll speak for the people who are too ill to speak and march for the Lymies too disabled to walk.  The Lyme community needs the continuing support, we are not there yet.  We need to know that there is a cure and we need to be able to get properly diagnosed! Chronic Late Stage Lyme needs to be recognized and treatment needs to be affordable.  This illness has changed my life forever and it's shaping me into somebody I never thought I would be.  There are really low lows and amazing highs, stories need to be told, and hope needs to radiate.

5.  Be the best person I can be, physically and mentally, and live life that way too.  There is no doubt in my mind that I am going to be climbing mountains and doing back-flips off beams.  Late thirties are gonna feel like early twenties.  I like the person I'm becoming, I have a purpose in life, previous to Lyme I just freewheeled by.

Thanks girls, for taking a bite out of Lyme for me.  I was unable to make it to my friends wedding in Cleveland...So this is what my girls did for me!!!!  So awesome, I love them all.

Thanks for reading!
Becky

Lesson From Lyme

Before I start this post I want to say that I have been feeling phenomenal.  There has been lots of downers, (one of which you'll read about right now) to get me to this point, and I know there will be more low points during my treatment.  But if my highs feel like this, then I'll take the down days, killing more bacteria!  I have been ill for 5 years with Lyme disease.  For the first time in five years, pieces of the real me are shining through.  It feels unbelievably great to be feeling better, there are no words for it, just smiles. :)

My body has been unresponsive for five years.  For the last six years, up until I started treatment for Lyme disease, I used to wake up at 5 am and go to the gym to do fasting cardio, followed by weight training.  I did this 5 days a week and I also ate a clean diet of 1200-1400 calories a day, anymore I would gain weight.

Throughout the last five years I've eliminated gluten, dairy, grains, and sugar.  Still, my body is unresponsive. Did this frustrate me?  Yes.  Did I work as a personal trainer and struggle with my own body? Yes.  Do I still?  Yes. Did I know why my body wasn't working correctly?  No.  That is until I figured out that I had Lyme disease, which had hindered everything in my body, including, my hormones and thyroid.

My body has a great amount of healing left to do, and my thyroid and Lymphatic system still aren't functioning where they should be.  I try not to stress about it, because I know things will get better, but my health has to get there first.  It is disheartening, I'm not gonna lie, it's hard to know that I do everything I can physically, and I'm unable to achieve my fitness goals for reasons beyond my control.

I had a bad experience when I entered the second antibiotic into my new protocol for my treatment of Lyme. I had my first herx reaction from hell, and I broke out into a horrible rash all over my body.  If you are unaware of what a Herxheimer reaction is, head back to this post.  http://brewlifewithlyme.blogspot.com/2015/03/lets-talk-about-herxing.html

This happened because I was not detoxing my body like I had been previously.  I wasn't taking the best care of me; pushing myself too hard at the gym, nearing passing out on several occasions.  I stopped taking epsom salt baths, wasn't drinking enough water, and wasn't eating foods that heal.  I know this wasn't an allergic reaction, because I made sure to do my trusty scratch testing.  Below you can view my scratch test for Amoxicillin.

This is only a 2 on my scale.

With every new challenge that arises in my treatment for Lyme, comes a lesson. I'm always trying to figure out the lesson from my Lyme.  I believe that certain things happen to certain people at definitive moments in their life. Lyme found me in the field, and it sent my life on an entirely new path. I can be pissed about it, or I can take this experience and grow from it.  Once I've crawled my way out of this hole, I will be a changed person, I already am.  My Lyme lessons will be with me wherever I go.

The video above describes my feelings about this rash, and what exactly was going on with my body. 

Below are a few photos.

By the way, I feel fucking amazing. I am killing those lil fuckers.

There is a lot of superficial in life.

I work in an industry where taking selfies in front of a mirror is the norm, people put sole value on their external appearance.  We all know that external beauty fades and I'm lucky enough to experience my body in a completely different manner.  Having an illness like Lyme disease, does that to you, it takes away all control, and weird bacteria take over.  The saying, "you are what you eat" doesn't apply to me, because I have lil spirochetes eating away at cells, collagen and entire systems within my body. That's one of the first things I remember feeling when I knew I was sick, but didn't know with what.  I remember feeling as if aliens had taken my body over, I had no control.  When your entire body is infected and not functioning properly, you begin to see the human body for what it is, not just a nice ass and a hot pair of shoulders.

If this rash could happen to me because I wasn't taking the necessary steps to detox my body, it got me thinking....How else am I damaging my treatment and overall purpose to get better? 

As symptoms started to improve, I began to overdue some things and became a little too nonchalant about my current health situation.

 I'm learning to find a peaceful balance, but it takes time, a little trial and error, and a lot of love.  Self love. 

Don't overdue it, only do what you are able to physically.

If I overdue it, you can find me on the bathroom floor, puking...and where is the self love in that?

This is one of my favorite reading sites.  Here is another woman's struggle with her body and Lyme disease.
http://www.xojane.com/it-happened-to-me/lyme-disease-weight-loss

Repeat song of the week.

Thanks for reading
Becky

Bicillin Injections

I have had enough large needles shoved in my ass, that I can now share with others some tips, if you are about to receive IM Bicillin injections.

I have a pain tolerance of a superhero, so to me most of the time, these are not painful.  They are uncomfortable and sometimes, if you go through an artery it can result in pain and a large bump.

Overall, the pain I feel daily, and the pain I have felt over the course of the last five years is far greater than these IM Bicillin injections.  In fact I enjoy getting these, because I know how much they are helping me. There is always a little bit of nerves before a shot, because I never know if it's gonna be a "stingy one"  or not. Currently, I go to a separate Dr. than my LL to receive the shots and I get them by a handful of different nurses.

Here's what I've learned...

1)  Be bossy, you are about to get a 2 inch needle shoved in your ass, deep into the muscle.  Know your stuff, and tell whoever is giving you the shot exactly where you want it, and how you want it done.  Trust me, they love you for this.  My nurses tell me often that they wish every patient was like me, because I know my stuff.  I know what I want, and I know how I want it done, and where, every time I go in.  If you are going to a regular Dr. for these, most nurses have never injected Bicillin, this is also an opportunity to spread awareness.  So let the nurses know why you are getting Bicillin injections and how they help you.  Talk about your experience with Lyme disease, they are in a position where they can help people, so EDUCATE them!

2)  Warm up the Bicillin.  It is stored in the refrigerator so it's cold and when it's cold you kind of feel a pressure building up during the shot.  You may also feel the medicine travel down your leg.  Warm the medicine in your hands, it doesn't take long.

3)  Inject slowly.  The slower the better with this medication, it is really thick.  If injected quickly, you feel a lot of pressure and radiating pain afterwards.  I had one nurse inject it in 4 seconds, this was after I told her it's way less painful to inject slowly.  It was horrible, I didn't know if I was about to puke or cry after the injection; I cried.

4) Apply light pressure with your hand, if the shot felt more painful than usual.  A vet friend told me the needle probably went through an artery.  You need to mend the damage, if you roll it out on a foam roller right afterward fluid leaks out and a large bump may appear.  I'm talking about a bump the size of a golf ball.  I made the mistake of rolling really hard on a foam roller after a few painful injections,  only to develop the golf ball bumps. It wasn't until I started to apply light pressure to the"stingy ones" that they turned into little marbles under the skin, rather than large balls.

The golf ball hiding in my ass.

5)  Jump rope afterwards!  It gets the medicine flowing.

6)  Lightly massage the area around the injection afterwards, to spread the medicine.

7)  Roll your butt out on a foam roller, not immediately afterwards though.  Wait a little while.  This breaks up the scar tissue that will start to develop.

8)  Rotate injection sites

(Sooo many people viewed this video)!!!!

(I made another one, with music and a few side notes)

I have not done the shots in the shoulder because the needle is too long.  Also, I have not done the thigh.  I've stuck with the ventrogluteal and dorogluteal muscles. To rotate sights, you do, upper right, upper left, lower right, lower left.  Repeat.  Keep track and inform the person giving you the shot, where it needs to be done.

9)  Clean the area with alcohol prior to injecting, wait until it drys, inject the needle.  Aspirate!  You must check for blood.  If you don't do this, you could inject into a vein or artery, and that would not be good. 

10)  Heating the area afterward and walking around to spread the medicine after the injection.  I stopped heating mine, because I usually went to work directly afterwards, but when I got to work I would jump rope and apply light pressure to the area.  Heating helps the injection site feel better.  

11)  Ignore the weird comments, the injector says to you.  They will say things like...

"Wow, this is a long needle" (right before they shove it in your ass)

"I have never done this before"

"This medicine is soooo thick, it's not going in"

"I really can't believe how thick this medicine is"

"Does it hurt"

"How long are you doing this"

Don't ignore these comments, because they make good comments too.

"Wow, you are so strong"

" I don't know how you do this"  (because I'm a bad-ass that's why)

" You poor thing, you just stay here as long as you'd like" 

"You really do so well with these"

"I thought about you the other day in a conference"

"You did a great job"

"I wish all patients were like you"

12)  Find the biggest guy or girl at the gym and ask if they have any tips for you. :) Steroids are injected the same way, and I received some of my most valuable tips from a gentleman who injects steroids.

 If you get a large bump, there is nothing really you can do about it, other than avoid hitting it.  The golf balls are pretty painful to touch, but go away in a week. 

Good luck with your injections!

I find that these shots have given me more mental clarity and more energy.  I have done them for about 3 months and I am currently in the process of stopping them.  I'm moving on to my next level of treatment...dun...dun...dun...

Here is an updated treatment video that goes into my new treatment plan.

Thanks for reading!

Fuck You, With Love

I really wanted to scratch this ridiculous blog, about things I love, and write a big Fuck You blog post.  But I'm not going to, because what good is that going to do for me.  

My life right now has been one step forward, two steps back.  Every time something good rolls around, I can now expect two really shitty things to follow.  

I am so sick and tired of being sick and tired!  I think it's taken me 6 months to fully except, or see the changes that have taken place since discovering I had Lyme.  Maybe the brain fog has worn off, and I'm starting to see the light again.  I don't know, but I don't want to be in the fishbowl anymore, I'm sick of watching everybody else live.  I don't want to be in pain anymore.  I am over it, done, good bye, get out of my life, let me live.

I hate what Lyme has taken from me.  Five fucking years of my life.  Lyme has taken from me my body, my mind, my schooling, health, friends, acting, relationships, money, home, Dizzy, work, my life.  This illness is going to be a life long fight, I realize this now.  

I'm angry.

I'm angry that I had to live with this for four years without proper diagnosis.  I'm angry that so much damage was done in those 5 years.  I'm angry that so many people are living with this unknowingly.  I'm angry that the CDC denies chronic Lyme exists. I'm angry that my life was placed on a back burner, while I figured out what was wrong with me, and nobody listened to me, it was all in my head!  I'm angry because I fight with insurance companies almost daily to get treatment for myself!  I'm angry that my voice is so small and that people treat me like less of a human. Why is it such a struggle to regain health? That's all I want, my health. 

Fuck Lyme Disease.  I'm pissed.  I have been advocating for Lyme with a smile on my face.  But not now, not anymore. This needs to change, people are dying from Lyme.  There are also Lyme patients killing themselves because they would rather be dead, then have to live with Lyme.  Lymies are unable to afford the ridiculous cost of treatment and it is killing them.  What is wrong with this picture?  I can't even believe this is happening in our society, right now.

Soooo this is kind of turning into a fuck you post, just not directed at the person I want to say fuck you to.  I'm going to change the subject now and talk about things I heart, because there is still love in my beaten up heart.  Mmmkkkk.  But not before you listen to this song, because this is on repeat in my brain.

I'll rebuild my life one pill at a time, because there is no room for Lyme.

I

Alter Eco Chocolate

The donuts, cake, brownies, cookies, and ice cream that you consume are something I haven't touched in a year and will never be able to touch again.  Sweets are basically nonexistent in my life, this is the only treat you'll see me consuming.  Sometimes I smother the chocolate squares in peanut butter!  I can eat PB again!!

Dates

Yes, these wrinkly pieces of goodness are also considered a treat, for me.  Anything starts looking good after years on a no sugar diet.

Collagen powder

I eat protein, but as an added way of getting protein I like to add collagen powder to drinks or smoothies.  I can't eat most protein powders due to allergies or food intolerances.  Lyme bacteria loves connective tissues and collagen helps rebuild cells.  Read below to find out all the benefits.
http://www.livestrong.com/article/431493-what-are-the-benefits-of-a-collagen-powder-drink/

Lemons

Help get the water down.

Spin Bike

I used to teach spin classes when I lived in NYC.  This bike brings back memories.  I'm happy to have extra energy to ride it.  I do about 3-4 30 min sessions a week, at my gym.

Bobby Brown concealer & corrector

For my Lyme eyes.  It works wonders, really.

Mid day Summer walks & lounging in the grass

(because I can be outdoors now)  The last 3 years or so I couldn't go outside much because my outdoor allergies were really bad.  For example, riding my bike outdoors caused throat swelling and rashes.

Sometimes it's just good to get out and get a lil sun on your skin.  It's especially nice breaking away mid day for an hour or so ;)

Naps

I said it!  It's hard to admit, that I nap or that I physically have to nap some days.  But I'm getting used to it and I think that's because I'm napping less.  Back before  I knew I  had Lyme, I went to doctors because I had insomnia pretty bad and needed some form of sleeping agent to help me sleep.  The doctors told me never to nap, because it would make it harder to get to sleep at night.  I was scared to take naps until I realized that my body is in recovery and I need them. 

Snuggles and hugs

Let's face it, everybody needs and loves, snuggles and hugs.  When your sick or not feeling well, or need a pick me up, snuggles and hugs are like a drug.

Thanks for reading!!

Passionate Project

For those of you who don't know, I am an actress.  I've always been an actress and I always will be an actress. I've found that my acting helps me get through the challenging days of treatment and I realize that what I'm going through now, is going to help me become a better actress.

I've had to cut back on acting, while going through treatment.  It's incredibly hard on my body and the long hours drain me physically and mentally.  This is something that upsets me greatly, right when the water started flowing, the drain got plugged!  So when a friend who worked with me several years back contacted me, in hopes of working together again, I could not refuse!  My energy level has been increasing and my mental fog has lessened some.  I'd like to say I'm over the "bad hump" of treatment, but I'm no longer naive about this illness, and I'm fully aware of the ups and downs.

Stela & Syd are mindful of my condition, and I'd worked with them in the past, so it seemed safe and stress-less.
This project is about Lyme Disease and I could not be more happy to be a part of it! I'm very excited to announce, I'm back at it...kind of.  I'd have to say this is my most passionate project to date.

We put together a last minute, public service announcement, for a global social cause, that we based on Lyme Disease.  This is a global competition, that has the potential to be seen by many!   It is a 60 second spot, and you can believe, it's near impossible to tell my story in 60 seconds. But it worked!  Here is the link below.

https://genero.tv/watch-video/39744



Our past project together!

When you consistently feel like a fish swimming in a fish bowl, watching the world go by from the inside, it's refreshing to have others reach out and show support.  Every time that happens it pulls me a little closer to the surface of the water.

Lyme Disease awareness month is coming to an end and I feel like it has been a success.  I've done my best to spread awareness, and the support from others that I have received feels amazing.  I was lucky to have been able to put two of my passions together and create something worth sharing.

A friend reached out from Nova Lash, wanting to #TakeABiteOutOfLyme

My wonderful co-workers stepped up to the Lyme Disease Challenge.

https://plus.google.com/+BeckySmithactor/posts/P9PAvNBcugN

My sister and her little ones took a bite out of Lyme for me.

Thank You, to those of you who have contacted me or have taken my advice.  I couldn't be more happy for those who I touch with my story.   I've helped more than one person by sharing my adventure and I only hope to help more.  There is talk of an upcoming documentary, to help open peoples eyes to the growing epidemic of Lyme Disease and it's co-infections.

The big question is...What's next for me?  Becky is feeling a bit better and there are offers on the table. 

This song has been on repeat in my ipod.

And this is what I look like when I'm contemplating major life decisions...

Hmm, what to do with my life?

Any advice would be helpful :)

Thanks for reading!

A Typical Day for a Lymie in Treatment

Not all Lyme patients have the same kind of schedule.   This is how a typical day of killing Lyme looks like for me.  I always feel like I should be doing more though.

5:30am  Wake up and take my thyroid medication on an empty stomach.  There is a large percentage of Lyme patients who have trouble converting there t4 to t3.  This really slows metabolism and causes weight gain.  So a compounded t3 is needed as well as t4.  Eventually the thyroid will balance itself out and medication won't be needed.  This could have been the reason I struggled with my fitness goals over the last 4.5 years.  I ate a clean diet of 1200 calories and gained weight!

7am  Breakfast   My breakfast needs to be allergen free, intolerant free, and low in sugar, or I'm off to a really shitty start.  Sugar feeds the bacteria and is one of the worst things to consume while on a shit ton of antibiotics.
I typically eat a coconut wrap with turkey meat, (that just says turkey and salt as ingredients) lettuce, some kind of fermented food, like sauerkraut, and maybe avocado if it's around.

I've added a smoothie to the rotation:
Blueberries, sea vegetable powder, coconut oil, plain unsweetened soy milk,collagen powder, water, spinach, carrots, pomegranate juice, and sunflower seed butter.  I don't recommend trying this one, it's disgusting, especially if you have no appetite.  Coffee, I will not give up my coffee, I've given up too much already :)

Antibiotics go down the hatchet with breakfast, along with my B6, to keep my brain active in the dream department.

9am  Pills, pills and more pills  These are usually gagged down at work.  They are my probiotics, cell support, active B vitamins, immune support, vitamins, antioxidants, you name it.  This usually stirs some questions... In the morning, the pills don't go down easy.

Snacks and lunch  Snacking (and my thyroid problem) helps me to keep the weight on.  Here are some of my favorite, and only treats I consume, really.  Eating high quality, non-GMO, organic food is necessary, this means no chemicals, dyes or weird natural flavors.  I also need to avoid dairy, gluten, grains, sugar, nuts, my known allergens and known intolerances.  My allergens are random, some examples are dill, wheat, almonds and nectarines. I'm known to make up new food groups, in order to eat.




My lunch is usually a salad with loads of veggies, homemade dressing, or chicken and vegetables.

All day, as much lemon water as I can drink, sometimes a kombucha, cell food, chlorophyll, and milk thistle, in water.  Maybe some dandelion tea, coconut oil and antioxidants, like blueberries. Keeping your body alkaline is extremely important, this prevents Lyme bacteria from thriving.

Random during the day things, I might have some blood drawn.  It's really important to have the liver checked monthly, to see if it's holding up from all the antibiotics.  So far, so good on mine.

I'm told I have "good veins"

I try to hit up the infrared sauna when I can, it helps regenerate cells and I have lots of damage to mine.  I would love to be able to enjoy a massage once a week, but that doesn't happen :)  I also try to do some kind of exercise, whether it's with my training clients, at home, or a walk. I've been appreciating beauty on my walks lately.

2x a week  I have my IM Bicillin injections, this means that I am now visiting my non LLMD doctor twice a week to have them administered by a nurse, in the doctors office.  I've grown to love my injections, they help with my energy and mental clarity, so much.  I'm currently off for a week, waiting on insurance drama and I'm back to my lethargic, dyslexic, word changer, and slurrer of a self.

Looong needle

My IM Bicillin injection video below

5:30-7 Dinner  Again this usually consists of protein, veg and fat.

Pill form antibiotics are taken again with food.

8-9pm millions of other pills, in the evening, these go down a little easier.

My easy to transport pill box for sleepovers

Sleep 9-11 So important when you are trying to regenerate your body and cells.  Sleeping problems are common amongst Lymies.  In order for me to get good sleep, I need to "get sleepy"  around 9pm.  This means get in a dark room, maybe look at a book, (not able to read just yet) a cold eye mask helps for some reason and melatonin.
I also foam roll the pain away, take epsom salt baths almost nightly. Run around to pharmacies, take naps, call insurance companies, call my doctor, call my other doctor, cook, take another nap :(
grocery shop, heating pad, work about 30 hours a week, and try to do fun stuff when I can.

 Most of my stress on a daily basis is usually caused by insurance companies.  I'm deathly afraid of medication not getting covered by insurance.  I'm also horrified that I will be unable to continue treatment for multiple reasons.

On the weekends, I try to have a little more fun, I'm off my brutal antibiotic Fri-Sun, so here I can enjoy a glass of wine or two.

Basically, my day revolves around getting rid of Lyme disease which makes me feel like a total outcast most days, and of course, my days are nothing like they used to be. :)
p.s.  This includes none of my personal life drama, which is also a total nightmare.

Thanks for reading.