Do What You Love

Having just come out of 9+ years of Neurological late stage Lyme disease I thought I knew what I wanted to do with my life. 

Quick recap:
I moved to NYC in 1999 to pursue my love of acting at The American Academy of Dramatic Arts.  Soon thereafter I began a fitness career on the side.   My first job as a personal trainer was at Synergy Fitness Club on the Upper West Side.  I taught my first spin class there and watched the other trainer girl keep her slim figure by eating dry oatmeal in the locker room.  I lived in NYC in the era of bean pole models where having a pair of shoulders meant you were a professional athlete, or so passerbyers would think.  I was often asked what sport I trained in and my response was simple:  I just work out.  Before Crossfit muscles weren't cool but I have long thought they were.

Please understand, its like a new beginning for me.  My life has had to greatly hault over the last 9+ years from undiagnosed Lyme disease and treatment.  I am feeling more free and healthy after years of the reaper hanging above.  Acting, fitness, and health was part of my life prior to my getting sick and getting a diagnosis.  I figured my new found knowledge in medicine, natural medicine, alternative treatments, and the sincere joy I get from helping other sick humans would further expand my career.  Modern medicine has failed Lyme patients tremendously, so we educate ourselves and fill up with an abundance of knowledge in order TO HEAL OURSELVES and help others heal on their journey.

I got incredibly ill with undiagnosed Lyme disease and had to withdraw from school due to my inability to focus, retain information, and my immense pain while studying for hours on end.  Since 2010 I have been trying to return (the brain is finally ready).  My recent goal was to get my degree in Public Health and Communications, give speeches about conditions related to Lyme disease at events such as TedX, and write books!

But man...Since my last blog post I have begun to question everything I thought I wanted to do with my life.  I've had thoughts of not ever wanting to have a conversation about Lyme disease again!
My reasons are partially due to the:
1.  Backlash the Lyme community gets when we share information the general public is weary of or uneducated on.  People simply fear what they do not understand and get angry!
2.  Healing... This disease has taken up nearly a decade of my life.  It's like a bad ex boy... Leave that shit on the curb and let the garbage man pick it up and put it where it belongs:  The dump with the rest of the slime balls.
3.   Lastly, it is very sad for me to see people who have been swept up in the medical world, on massive amounts of medications,  so sick they may never quite understand what is going on, and may never get to a point where they can get better.

Then I got a message from a gentleman whom I went to high school with.  He was a few grades older.  I received the message in the gym locker room just after I had an epiphany while stretching.  I realized that I'm nearing 40 years old and I might not get another 40 years.  It made me think of my dad, he never got another 40 years!  That was scary to me.   The gentleman told me I was an inspiration to a friend of his with Lyme disease and many others.  It was good timing.  I'm still unsure of my plan, but for now I'll continue on and hopefully figure out why I'm on this planet!

My new motto: Do what you love.

Acting on set  :)

Girls girls Girls

Love Fiona and Loved loved Loved this wedding!

My latest Update Video

Thanks for reading!

Becky

4 Women 4 Ways

This year I have taken it upon myself to help multiple people finally get the right diagnosis.
beckydsmith.com

Happy Lyme Disease Awareness Month!  This year I am introducing 3 amazing women who are taking control in the fight against Lyme disease!

Meet Melissa: Melissa was the first person in Spokane who really started talking to me about my Lyme disease.  I think a lot of people fear bringing it up because they don't know quite what to say to me about it.  Not Melissa.  She's a super bad ass woman who is a single mother of two boys. She was also raised by a single mother.  Melissa is one hard core hockey mom and athletic trainer.

Interests:  
Exercise, health and wellness, being outdoors, backpacking, camping, and lake adventures.
She recently decided that she wanted to help volunteer building trails.  She has helped build/repair two trails in Spokane; Fishtrap and Manresa Grotto.  This year she took on a 52 week hike challenge.
Lyme education:
With hiking comes ticks. Melissa has found a tick in her vehicle and spotted numerous ticks on her dog during a tick check after hiking. She has since stopped taking her pooch along for adventures in danger of bringing home ticks.  Melissa has without my help taken it in her own hands to educate various hiking groups on Facebook, friends, fellow hikers, and clients about the dangers of ticks and Lyme disease.  That is why I wanted her to be a part of the Lyme disease awareness month!
What she does to stay healthy:
Melissa eats a healthy diet and exercises.  She eats a gluten free and mostly dairy free diet with no processed foods.  She takes a multi-v, fish oil, vitamin D, iodine, bee pollen, phytisone, amino acids and more.  She uses essential oils and drinks a ton of water!


Meet Allison (A wonderfully beautiful woman coming to terms with her new Lyme diagnosis who does not want her photo shared):  I met Allison right when she was waiting on her Lyme disease results!  You don't hear many people in Spokane talking about heavy metal chelation, so I had to spark up a conversation.  Our conversation led straight to Lyme disease.   She had been talking with a doctor via Skype who suggested she get tested for Lyme after decades of degrading health and autoimmune disease.  After she received her positive IGeneX Lyme results she asked me if treatment of Lyme disease would resolve her autoimmune conditions and I told her yes, besides hypothyroidism.  Let this be an eye opening experience to those who suffer from ANY autoimmune condition.
Interests:
Allison is a mother of two.  Her hobbies include yoga, holistic health, hikes, family outings, and prior to her worsening Lyme symptoms, live music shows.
Lyme education:
Allison was first diagnosed with Rheumatoid arthritis at age 19.  By then she had knee pain, body aches, and felt like she was running marathons although she hadn't been.  As time progressed she was diagnosed with Hypothyroidism and multiple viruses such as, Epstein-Barr.  Ultimately throughout the years things weren't adding up and she was given the autoimmune diagnosis of Undifferentiated connective tissue disease.  In her mid twenties she had several emotionally traumatic events and her symptoms progressed to brain fog, and massive digestive issues.  By her thirties she was having children and her symptoms had subsided until her last postpartum flair that eventually led her to the ER with Pericarditis.  At that time Allison was a mother and knew she needed to take control of her health.  Allison found a homeopathic doctor in another state and via Skype consults was eventually led to her Lyme disease diagnosis, just one month ago at age 37!  It is infuriating that so many people have to suffer for so many years before they can get help.
What she does to stay healthy:
The greatest thing about Allison is that she was already doing everything in her power prior to her Lyme diagnosis to benefit her health.  Allison currently takes tons of supplements, follows an aip/keto type diet, she works out, does intermittent fasting, meditation, infrared sauna, sleeps 8-9 hours a night.  Drinks celery juice and lemon water. She has also done heavy metal detoxes.
Final note:
As a mother with Lyme Allison faces the challenges of Lyme guilt and the perceived idea of laziness.  Being a very social person she has since had to learn to say no more and reevaluate everything in her life.  She recommends those suffering from poor health, unable to find answers to find a good functional medicine doctor!  If you have been diagnosed with ANY autoimmune condition I highly recommend getting tested for Lyme through a trusted lab.

Meet Andrea:  Andrea and I clicked right away.  She is a great friend that has been there for me throughout these last few chaotic months.  I'm happy to have her in my life.  She is a single mom of two who lets me sleep over her house and teach her kids how to fart... the right way.

Interests:
Andrea is a massage therapist who enjoys mountain biking, hiking, kayaking and skiing.  She has been volunteering for the Washington trails association and is a new puppy momma.
Lyme education:
Andrea recently found a tick in her home and took a photo of it.  One evening while out walking with her children I asked to see the photo;  Although wanting to see it I hesitated quite dramatically because it was a real photo of a tick in her home!  Her children had sensed my anxiety and she briefly explained that it was a "bad type of bug."  Andrea later went home and educated her children as to why I had the reaction I had.  She informed them of how one single bite from a tick could change your life and make you very ill.  That is why I wanted Andrea to be involved this year!  Had I been educated in my youth about the dangers of ticks, tick bites, Lyme disease, ANYTHING I may have not had to endure all of what I have endured over the last 9 years of having Lyme disease.  Please educate your children about ticks.
What she does to stay healthy:
Andrea stays active, goes outdoors often, and eats a healthy diet!

These ladies are saving lives and they don't even know it!

Thanks ladies and thank you for reading!

Booney took a bite out of Lyme for his momma

Thank you Boone and I love you.

All I Ever Wanted

I have some good news.

My health is going great!  There has been some excess stress as of late but regardless things have continued to improve.  My headaches are gone and my sleep has increased for starters.  The chronic fatigue has lifted and I have not had any neurological issues or joint pain in months.  Naps are a thing of the past.  In fact my days are jam packed and very fulfilling.  I feel the best I have felt in 9 years.  Perfect timing, right?  Summertime in Spokane.  

It was my intense fluconozole treatment and my switch to ketotifen for my MCAS that got me past my few remaining symptoms.  My current protocol is Caproil in liquid form and ketotifen 2mg.  I also take thyroid meds and tons of supplements.

I am unable to do all of the treatments and dosages my doctor recommends at the current moment.  It's unfortunate but I'm continuing to see improvements and that is ALL I have ever wanted.

Food allergies and eye discomfort continue to plague me. I have tools to help with both conditions and high hopes that there will be continued improvements. I won't stop until I get them.

After a 9 year battle with Neurological Lyme disease and several conditions brought on by Lyme it's happening;  I'm almost forgetting I have it!  

My Booney babe, downtown Spokane, disc golf, Arbor Crest winery, & my motorcycle ride.

(I wanted to add K8+4 in this photo somehow.  Finding a platform to chat with my old gang has been the highlight of the last few months.  I love seeing your gorgeous faces).

For the Lymies:  I cannot stress how important it is to keep going in your journey towards remission.  There are times you will feel like you are getting absolutely nowhere. It's hard to have patience, we all prefer a quick fix but I assure you there is not one for Lyme disease.  Find a trusting doctor, keep asking questions, and live day by day.

Every bit of improvement is the pinnacle of the obstacle, or symptom at the given moment.

Each obstacle you overcome gets you closer to the finish line.
Remission.  It's possible in time and wholehearted commitment. 

Stay tuned for my Lyme disease awareness month Post!!!  Because it's Lyme disease awareness month!

Thanks for reading!
Love, Becky

For My Dad

My dad past away on January 18th, 2018.  

I knew things were going down hill when he stopped responding to my texts.  Dad was always keeping me updated with what was going on with the family back home.   I pretty much left home when I was 18 and only returned for a two year span prior to moving to Bellingham;  My entire adult life I have been out of the loop so his photos and updates always made me feel like part of the family.  Although, my mom has since taken over the role.

Dad found out he had pancreatic cancer in September 2015.  He went though chemotherapy, radiation, and the whipple surgery and by November 2nd 2016 he had his port removed from his chest and was ringing the cancer free bell.

"Ringing the Cancer free bell"

"Glad to be over with this journey"

Hopes where high, but we all know how cancer goes.

By July of 2017 six nodules were found on his lungs that ended up to be cancer that had spread, so the chemo and radiation began again.  This time it was much much harder on him.

Dad called him and I "Smith Strong" we were both going through our own health battles.  He would send me text messages like this:  "Just saw your YouTube video. U r UNBEATABLE!  Smith strong.  Hang in there Beck, one day will become one week, followed by one month. We all start with baby steps, but your goal is to beat this.   Thanks for the update and & yes I'll take a big bite out of Lyme for you today.  Love dad."

Dad would let me know that he was sharing stories of Lyme awareness to his nurses and others at the hospital when he would go for his chemo.  In fact dad was always sharing stories with people!  Growing up we'd lose him anywhere people were;  He loved sharing stories.   When I was really ill and undiagnosed with Lyme I knew something was terribly wrong with with me when I began to shy away from the public.  Attention seeking was a thing of the past, invisibility was the new me.  I'd hide from acquaintances in grocery stores, parks, and restaurants, attempting to be invisible in case I ran into someone I knew prior to my illness.  This was far from the Becky who moved to NYC at 19 to pursue acting.  I was afraid if I ran into people I knew they would see right through my performance and find out how sick I had gotten since the last time they saw me.  The reputation I had built up in Bellingham had quickly diminished as I sat home many evenings and weekends.  I felt ashamed because my illness had no name for the 4 years I went undiagnosed.  To the outside world I appeared lazy and unreliable, but inside of my world, I was dying.  I got the talking gene from dad, obviously.  With my current health improvements come joyful experiences with the public and a resemblance of the Becky that once was.

Dad was the person you'd call when you were making hard boiled eggs and you couldn't remember what to set the timer to right when the water started boiling.  He was the one who attempted a period talk with me after picking me up from high school several times for puking in the girls bathroom every month (years after I had gotten my period).  Dad was the parent that let me off the hook when I got into trouble and the one I'd always go to if I was in trouble.  

I'll never forget the burn I got as a child on my calf after riding on the back of his motorcycle.  Or the time our dog Gypsy got lost and we found her on the next street over.  Dad gave her, a mini Shetland Sheepdog a ride home on the motorcycle too.  If it wasn't for him we wouldn't have had so many dogs growing up!

My middle name is Denise after my dad, Dennis or Smitty to his close friends.  The closest to a son that he was ever getting.  I wouldn't say I fit the description of a tomboy growing up but I definitely gave the term a run for it's money. It wasn't until I got Lyme disease that I became high maintenance. Shit, I never even learned how to use a curling iron and curl my hair until I was 30 years old!  I rocked boy short hair for my senior year of high school and I'd dye it bright red or snow white black.  I never cared about looking pretty, I'd rather of had everyone in the the room laughing so hard they nearly peed their pants.  I was never any good at sports, but I love getting dirty.  Dad was probably content,  it could have been way worse, I could have been in beauty pageants or something. Ohhh, I was a very uncoordinated cheerleader my freshman year of high school...almost forgot about that one.

The reason behind my high maintenance!

Yeah soooo, about these photos.

Dad was Irish and loved everything Irish, he played competitive pool, worked with the Cleveland police officers, taught me to cook, change car tires, pack my clothes military style, in fact he was once in the military. He entertained my friends growing up and made fun of my mom, maybe too much.  Dad was the breakfast master!  His breakfasts were the BEST every Saturday he would make them for the fam!

He showed me a trigger point in my traps to squeeze really hard to get temporary relief from headaches...no one can fix a headache like he did.  He was a true artist! He could draw and paint like a professional, no joke! I think at some point he made ceramic items too.  I did not get the painting and drawing gene...but my sister did.  Below is a leaf painting I made my sister paint for me in the early 2000's.

I'm sorry sister I had to throw this away along with all my other belongings prior to moving to Spokane from my multiple toxic mold exposures in the homes I lived in.  I cried and made sure to take photos.  

Dad taught Heather and I how to love and how to not be afraid of love.  Dad knew my biggest weakness even before I did and totally caught me off guard one phone conversation when discussing future career options. My father taught me my work ethic!  He worked days and nights to help support my mother, sister, and myself.  He is the reason why I was able to work so DAMN HARD and accomplish so many things over the last 8 years despite my symptom and disease list.

Dad used to tell me he got his strength to fight his cancer through me and my 8 year battle with Lyme disease but I don't see it that way.  Most importantly my father instilled in me a drive to want to better yourself.  He gave me the superpower to push through and keep going.  Whatever life threw at us, regardless of our health, we're Smith Strong.

I wish dad could have made breakfast for all my close friends who never got the chance to eat Smitty's Breakfast.

I would normally end this with dads favorite Irish blessing, the one that has been hanging on different doors our entire life.  But instead I'll end it with a poem by Jim Willis.  Dad knows why...

I loved you the best

So this is where we part, my friend,

and you'll run on, around the bend, 

gone from site, but not from mind,

new pleasures there you'll surely find.

I will go on, I'll find the strength,

life measures quality, not it's length.

One long embrace before you leave,

one last look, before I grieve.

There are others, that much is true,

but they be they, and they arent' you.

And I, fair, impartial, or so I thought,

will remember well all you've taught.

Your place I'll hold, you will be missed, 

your head I stroked, the nose I kissed.

And as you journey to your final rest,

take with you this....I loved you best!

Lyme and Cancer have no cure.  Those sick with Lyme disease have been denied medical help from doctors and insurance companies.  Most of us are able to find our way and we get better with time and $money$  Some die trying.  Antibiotics were not the answer for me and unfortunately for most suffering from Neuroborreliosis Lyme disease. Alternative treatments are helping me find my way back to the person I once knew.  Maybe it's time to start looking outside the Chemo and radiation box and find our answers for Cancer elsewhere because it just isn't working for most.  What is cancer and what is happening in the body when you get cancer?  Let's start there.


Dad, you will forever be in the hearts and minds of those who love you.

Love you and miss you,
Becky a.k.a Pumpkin

Updated Treatment Video #20

Here is a spastic little video of what is going on with my current health situation.  I discuss what treatment is giving me the best benefits at the current moment.

Happy Holidays!

-Becky

3 Years of Lyme disease Treatment: 2 stories

Treatment goes 2 ways for me. 

 50% of the time I want to jump off a bridge and die and the other 50% dreams of turning this condition into my mission. I waiver to one side or the other based off my symptoms and how I'm treated by insurance companies mainly. Today, I have two stories to tell; one of hopelessness and the other of hope.

Let's get the shitty one out of the way first.

November 16th marks the 3rd year anniversary of starting Lyme disease treatment.  I'll never forget that date.  I forget birthdays, names, and what I was just about to say.  But never that date.  That was the date I had the power to finally after 4 years of being ill, misdiagnosed, ignored, and being told I was healthy despite knowing in my core that I wasn't, to do something about my illness.

Every anniversary of the start of Lyme treatment I want to write, "I'm better" and because I can't I find myself in a whirlwind of emotions, a puddle of tears, and a black hole of depression.  You can usually find me alone in my neighborhood bar making friends with the bartender and trying samples of anything I can drink that won't kill me.  Remember this is the shitty version... I'm over it.   Sick with Lyme since winter of 2009, four years undiagnosed, and three years in treatment.  I want it to be over.  I want to move on but unfortunately I can't yet.  Chronic Neuroborreliosis Lyme disease is a full time job.  The constant insurance battles, traveling to doctor appointments, multiple illnesses, supplements, medications, lack of energy, no foods to eat, the pain, the money spent, alternative treatments, faking being okay, everything...all while not well and all while working and trying to survive.

I want to be in school, I would like to be enjoying the new city I'm living in, meeting more people, doing more things.  I miss the old Becky.  I was social, busy, active and way less tired.  There are so many times I want to be living more but I am still confined and just getting by.  Since January I have been off antibiotics and I relapsed.  I have been treating my immune system and candida and at this point I am at 70% without the antibiotics.  I still struggle with my eyes, I'm exhausted, and in a lot of pain most days.  I have a very limited diet and I have developed too many food allergies to count on my fingers and toes.  There are some good days and my goal is still 100%.

There are multiple levels of hopelessness but another major factor comes from the medical system:

The CDC says I should be better by now.  In-fact, I was supposed to be better 2 years and 11 months ago.  HA, right.  Insurance companies completely deny chronic Lyme exists, despite the 230 studies done proving evidence of persistent Lyme bacteria.  We are still being told that Lyme bacteria does not linger after 2-4 weeks of antibiotics and that our remaining symptoms left after treatment are something called post Lyme disease syndrome.  The IDSA  will not admit that the bacteria persevere inside of our body after their recommended treatment dosage of 2-4 weeks of antibiotics.  The IDSA will not change their guidelines because they feel there isn't sufficient evidence of persistent bacteria in those sick with Lyme disease. Therefore, denying us proper medical treatment and insurance coverage.  It's a fucking joke.  The article below lists 230 peer reviewed studies that show evidence of persistent Lyme disease.
  http://norvect.no/230-peer-reviewed-studies-show-evidence-of-persistent-lyme-disease/

Anybody who knows anything about Borrelia Borgdorferi bacteria one of the species that cause Lyme or that of the Spirochete class of bacteria (the bacteria that causes Lyme disease) clearly knows it is a stealthy organism.  The corkscrew like bacteria worm their way into our tissues, and can affect any organ in our body.  The bacteria evade our immune system by changing into 3 forms, including living in bio-film and hiding in hard to reach cyst forms.  The bacteria wreck havoc on the host! It's quite obvious that the bacteria will persist after 2-4 weeks of antibiotics.  It's not rocket science, yet we are still arguing about it?! This link describes why our immune system gets wacky in more detail.

https://www.holtorfmed.com/lyme-disease-evade-immune-system/

I receive help from Ilads trained doctors going against the IDSA guidelines. These medical professionals believe the bacteria remain after 2-4 weeks of antibiotics and they are willing to risk their medical license to help chronic Lyme disease patients with long term treatment.

The good story:
I might not be as healthy as I'd like to be but I'm still killing it.

If giving up was something I did then eight years ago I would have ended up like most Americans with chronic illness; scooped up in the medical system, paying the salaries of doctors prescribing drugs rather than helping their patients, and giving all my money to the pharmaceutical companies trying to keep me sick. I would be heavily medicated, most likely on steroids, and would be treating Chronic Fatigue, Fibromyalgia, Rheumatoid Arthritis, and early onset Alzheimer's disease.

Although everyday my life is a challenge that nobody other Lyme disease suffers can fully understand I am grateful this November for the tenacity I have.  I make it known to insurance companies, doctors and anybody who wants to try fight me on it that I am not backing down.  I always win and I get what I want.  That is why I'm functioning at 70% right now and that's why I'll make to 100%.  I am currently in the process of taking this tenacity I have for my health and implementing it in my day to day life.  I have some goals set and some things to accomplish this next year. Please keep an eye on my Lyme disease advocacy page for emerging projects.

http://www.beckydsmith.com/lyme-disease-advocacy-1/

More good news is that last year around this time I took appropriate measures to make some changes with doctors based off my own instincts.  Turned out I was correct and since we have been discovering and treating other conditions that are helping to support my immune system; keeping me off antibiotics, and helping my body to be strong enough to fight this infection on my own.

Happy Thanksgiving and thank you for reading.

The neighborhood Turkeys

It's All Coming Back To Me

Dad found out today that he will be starting chemo again; this time for the 2 nodules behind his ribs, on his lungs.  I worked a 10 hour shift  standing in one spot on less than 5 hours of sleep.  I couldn't sleep because I spoke with my mom on the phone last night and I have to admit,  I've been pretty selfish lately.  I've been avoiding talking to my family on the phone because it stresses me out and gives me severe anxiety which disrupts my sleep for days.

My mom, dad, and sister live in Ohio and I've lived in Washington State for the past 10 years or so?? My mother and father have never come to visit.  I find myself lying to others when they ask about my family visiting because I'm too embarrassed to say that they haven't come to see me.  My sister visited once.  I don't hold it against my mom and dad for not coming out, life always seems to get in the way.   I definitely don't get back to Cleveland as often as I'd like strictly because all of my money is spent on my health and Lyme disease treatment.

My family is stressing me out because my sister married a man who ended up not being the man she thought she married.  It hurts to be so far away and to see her in such distress and unable to help her. Even though she's my older sister I always felt the need to protect her.  Heather is drop dead beautiful, really smart, and a stickler for cleanliness.  The nickname I gave her growing up was Miss America...because she was just that perfect.  I was the total opposite.  When we were kids she wouldn't let me walk on her bedroom floor barefoot because she hated feet and when I was older she always knew when I was at her house because the trail of crumbs I left behind.

 I headed home to Cleveland about 8 years ago to surprise my dad at his 60th birthday party; By the end of the weekend my sister had myself, my new boyfriend at the time Josh, and our immediate family eating  spaghetti outside on a chili October evening because she was at her crumb threshold! She was done cleaning up after the messy festivities the weekend brought.  After she had her girls things changed and the last time I was home visiting I didn't even have a funny crumb story to take with me when I left.   

Another reason I couldn't sleep was because I found out my sisters pug Olive got sick and has LYME DISEASE.  I was up all night with anxiety about how exposed my family is to this disease.  Weird anxiety surrounding ticks and Lyme happens more often than I'd like to admit.  My sister has two little girls and the thought of them getting ill makes me sick to my stomach.  I toss and I turn at night but can't keep what those tiny creatures can do to ones body and mind away.

Dad, the girls, and the newest edition, Hazel. 

Olive 

With all of this. All of this stuff going on.  One thing that is kind of at bay is my own horrible Lyme disease symptoms.   My current symptoms include:

-Sjorgrens symptoms of eye dryness, ear tubs getting clogged which results in clicking while I speak.
-Laryngitis like symptoms of wheezing while lying down and losing my voice slightly by having dryness in my throat.
-Sinusitis like symptoms.  Pressure in my sinuses, headaches, watery eyes.
-MY EYES.  Redness, swelling, pain.  The norm for the last 8 years.
-TMJ.  Clicking in my jaw.
-Exhaustion but I think that's because my life is insane.

All of these symptoms are Lyme related and all of them except my eye issues are pretty new to me.
It's all from the neck up, of course the hardest places to kill the Lyme bacteria.  The Lyme has come back enough to be troublesome and I will not know the next steps to take in my treatment plan until I speak with my doctor next week.

-I have to be careful of Mast Cell Activation Syndrome triggers.  I was having loads of headaches from Chiropractic adjustments or Sinusitis or new food allergies surfacing and due to the pain I needed to take Excedrin, Tylenol or Ibuprofen.  I discovered I can't metabolize Excedrin and Ibuprofen; they are a triggers for Mast Cell and give me muscle pain in my upper back.  These are things I have to constantly look out for!

Another thing I have to look out for are food allergies.  In the last few months I've developed new ones to peanuts and rice.  I haven't counted, but I'm reaching twenty some food allergies at this point.  It's insane and challenging.  Currently doing LDA injections so hopefully that will help.

Overall, things could be way worse.  My brain function is great so that's awesome!  My symptoms are sticking to the neck and up.  Which is good.  Not great and not over but getting there.  I can't be cured but I can be controlled and I'm getting things under control slowly but surely ;)

Everything I've done for myself and for others, it's all coming back to me.
This ones for the Lymies I'm so happy to help you.

Thank you for reading
-Becky

Universe

I dug this draft up from over a year ago, so some of the details are literally from over a year ago.  I'm not going to change it or edit it to current time so keep that in mind while reading.  I chose to finish it because of this sentence right here:  I haven't been feeling like a prime steak lately, the higher dosages of my meds are knocking me down to select, but it's to be expected.  Haha.  Now remember this draft was originally from over a year ago and it was January at the gym...

Living Life

With Lyme

I met with an interesting man the other day at my job. Jeff, a man about 60, who later ended up bringing me gallons and gallons of kangen water to help heal me.  It was awesome.  One of the things I enjoy most about my job as a personal trainer is that I get to meet with random gym goers throughout the week and listen to what's going on in their world.   As I've gotten older I've learned to shut up and actually listen to people.  We all have a unique story worth sharing and we each deserve to be listened to. Not interrupted because we have a similar experience that we deem relatable.  I believe anybody who comes through my life and connects with me on a level more than just bologna talk has a purpose for being there.  Stop talking and truly listen.  Connect.  Experiences come from connections they truly do.

Jeff began asking me personal questions so I felt it was okay to insert some personal information about myself.  I mentioned that I am an actress;  the golden globes were then talked about, which led him to mention a commencement speech that Jim Carey had addressed to recent graduates of MUM college. I hadn't watched it, and he suggested that I do so,

Later that day after a rainy, freezing walk at Lake Padden I got home and prepped some breakfast foods.  I haven't been feeling like a prime steak lately, the higher dosages of my meds are knocking me down to select, but it's to be expected.  Any change in medicine can make for a lethargic week or two. Very exhausted, I  snugged in my fluffy bed and You Tubed the Jim Carey speech.  The beginning started off slow, typical JC jokes but as he got going something clicked with me.  Earlier in the week I had a moment... I was taking a walk on the boardwalk, watching so many dogs go by.  I kept thinking to myself how I really really want a dog.  I lost my love with the end of a relationship.  Dizzy, a Rat Terror, ohh I mean Terrier...who Josh and I rescued.  Josh was the guy I dated for 7 years.  We broke up a few months into my Lyme disease treatment.  He's a tall, skinny, enthusiastic, skater/musician guy with more hobbies than the hairs on my head.  Josh has crooked teeth, crazy blonde hair, and a love for the little things in life.  Dizzy was the only one of twelve dogs tied up in her foster home.  We should've known upon arrival that she was going to be trouble.  Later, we should have known for sure when they helped her in our car and didn't bother with our money!  We had to remind them that we needed to pay for Gizzy (her pre-name change).  HA!  I think they were just ecstatic to see her gone after the year or so she had been in foster care.  Dizzy is a bundle of trouble, warmness, and love.  She helped me get through 4 very confusing, ill years of my life and I miss her beyond words.  I used to pretend she had all the same food allergies as me just so could have somebody to relate to.  The Worm.  Skwurm.

Thoughts of dogs triggered more thoughts such as, how I really need a job, one that pays the Lyme and the bills and allows me to have fun, maybe go on a vacation for once in my life.  All I could think about was, Why can't I?  Why can't I have what I want?  Why?! Why?! Why!

Watch this!  Then come back, things will make sense then I promise.

"You can fail at what you don't want so you might as well take a chance on doing what you love"

That very commencement speech had finished my thought process that I had on that boardwalk stroll.
Yes, I have an illness that zapped 8 years of my life.  Yes, I could have been long done with school and have a career I thought I wanted.  I'm not going to blame Lyme disease for not being where I want to be in life.  It's part of my story but I'm thinking those heads in that Jim Carey painting could be part of it.


Anyway,  Jim Carey talks a lot about the Universe, and so do I.

There was a moment a few years back I explained it in this post.
http://actorbeckysmith.blogspot.com/search?updated-min=2014-01-01T00:00:00-08:00&updated-max=2015-01-01T00:00:00-08:00&max-results=1

It was the moment I looked up at a billboard on my way to Pilates and asked myself, Why can't I be on a billboard, only a few months later to end up on a mother fucking billboard!

That moment the universe aligned for me.  There are more little miracles than I can count on my fingers.

Buildings should have been falling around me, or on me during the attack on 9/11 but I randomly had a doctors appointment set up for a procedure that day.  The exact time the first plane hit I should have been walking out of the World Trade Center headed to work.  I gave myself 15 minutes to get to work and I needed to be there at 9:00 am.  And trust me,  doctors appointments were not a routine occurrence back in the day.  I switched the years I took my Chemistry and Biology courses in high school and ended up meeting Spada, who helped me get to NYC at the fresh young age of 19.  Once in NY I had a conversation with one of my all time faves, Rachel.  Her roommate was dating Liev Schreiber at the time so celebrities were something we spoke of frequently.  While snacking on Italian treats and sipping coffee I articulated how I could care less of celebrities but one, and gushed how I would loooove to see ETHAN HAWKE.  Rachel and I said our good byes and I walked out of the cafe with the sweetest miniature tiramisu cakes I used to be able to eat.  The cafe was located right across the street from one of my acting schools I studied at, Lee Strasberg Theatre Institute.  I continued straight down 15th street towards Union Square. Took a right and who do I see, ETHAN FUCKING HAWKE with his son on his shoulders walking down Union Square.  We didn't have cell phones that took pictures back then, it was the early 2000's. Life wasn't about asses on Instagram, lots of likes, and making your life seem like a dream.  We all just lived with our personalities and whatever we felt like doing...not for the sake of the photograph, likes, or the attention.

Things happen, they just do. 

It's a weird feeling when it happens.  It feels crazy!  It's you and the universe in that moment.  It's hard to explain and others may question your truth.  But you know and you're not looking for approval.  Keep asking for those moments because they are the best when you get them!

 AND

 Like Jim says, Risk Being Seen In All Your Glory.
I love that. 

Today, now in current time, Why can't I? gets me through my day.  It gives me super powers.

Some Lyme stuff below.

With Much Love, Becky

P.S.  I got signed with an acting agency this week. :) :) :) :)

Did Somebody Just Say Cake? Seriously, I'm hungry.

Okay I'm back.

My more positive than not positive self.

I wanted to crawl in a hole and never come out after getting off 2+ years of antibiotics and relapsing right away. Yet again, the only thing that was left for me to do was to just keep going.  My need for normalcy and relief enable me to keep searching for answers to my symptoms even when it seems like I'm in the boxing ring with the heavy weight champion of the world.

I have a complete different perspective of this disease strictly because of what happened to me over the course of the last few months.  It is truly amazing in a good and bad and wonderful way.  The reason for my change of perspective is because of my Canadian doctor.  I see or talk on the phone with him for 15 min every 5 weeks or so.  He makes treatment affordable for me and has changed the way I view this disease. He treats differently.  Had I gone back to my Seattle doctor after relapsing I would have gotten pumped right back up on dinosaur amounts of antibiotics and would never have gotten the answers I now have. Ohhhhhhh it's all so unbelievably complex I could throw something. How and if it falls into place is a mysterious and amazing thing.  All I can say, if you are still fighting is to keep asking yourself questions, and never give up on finding the answers. I'll say that until I die.  Question every single symptom.  Put yourself out there in the universe.  If I had not chosen to do a short 30 second video for a fellow Lymie I would never have gotten in contact with Nicole, another Lymie who introduced me to my new doctor.  She happened to see me on a Lyme video floating around facebook and realized we were neighbors in the same city.  I'd be so screwed had that moment never happened.  I was financially tapped and could not return to my Seattle doctor regardless.

Here's that video I mentioned

I'll give you an update further along in this blog on my treatment but I want to get going on some of my accomplishments over the last few months because sometimes I forget to look at how far I've come! Even though Lyme symptoms crept in hard about a month and half ago I am functioning the best I have in 8 years.  In November of 2014 I was just trying to survive.  Today I am beginning to flourish and I can feel it.

For Shania Twain life is finally about to get good after getting treatment for Lyme disease...Maybe mine is too?

1.

First off, I got a new job!  My new job is in health of course.  It's challenging, there are looooong hours and I've learned LOTS of new information but I've caught on and I'm surviving.  It was even acknowledged in a meeting how fast I picked up on things and how grateful the company is for that. Three years ago I was struggling to speak, I could not read, and just my cognitive symptoms alone plagued me enough to make me question if I would ever be able to function in the world let alone take on new responsibilities.  Right up to the day I took this position I feared my bodies ability to pull it off.  And I did it!  

  So. much. progress.

2.

I left everything I knew over the last 10 years and moved to a new city.  It's fabulous and new and larger than the last one.  I'm still getting broken in, but I love it so far.

3.

The girl who never wanted to get married and feared she might never find love again found love in the most unexpected place and got engaged.  I remember fearing nobody would love me again after my last long term relationship ended. I was sick and tired and 7 years older. I was 3 months into treatment and remember thinking, why would anybody want to get involved with this, looking down at my insanely symptomatic body.  In hindsight, there has been nothing yet more monumental than being a single women, defender of your own body.  You become super human and super empowered.

Sickness opens your eyes, the struggle helps to identify what to see, and the strength emanates; Allowing you freedom.

4.

I'm still going.  I am still fighting for my health after almost 8 years.  With so many ups and downs.  With so many medical bills and pills.  I refuse to stop until I get where I want to be.

The perseverance will pay off.

5.

Lastly and thankfully, I can be 100% confident that my muscle pain in my neck and back was due to MCAS and all the triggers that came with it.  Wow, to date that was the most challenging symptom to figure out for myself and doctors.  Since upping my dosage of Cromolyn Sodium I have been PAIN FREE in the neck and upper back area and it happened immediately.  That pain interrupted nearly every day of my life for 8 years.  There were so many days where it was all I could think about because it was always just there, even in my nightmares.

Quick health recap:

My getting diagnosed with MCAS has changed my life. After my relapse I went to speak to my LL in person.  He calmly suggested we up the dosage of Cromolyn Sodium and wait to see what happens for the next two months during my typical flair weeks prior to my menstrual cycle. WAIT TO SEE?!  My first thought was panic as my last LL doctor would have loaded me up on antibiotics.  That day I decided I had no other option than to trust him and let him be my doctor. After having been my own doctor for all those years it's something I struggle with; Lack of trust in the medical field, even the special ones who treat Lyme, but who can blame me?  I'll know more about the status of my immune system soon but so far there has been a turn for the better and his plan just may be panning out for me.

Lets enjoy our good days.

Thanks for reading
P.S.  I got an amazing offer, a Lyme disease patients dream.  Something that was meant for me.  Fate.  I can't talk about it yet, maybe next time ;)

-Becky

Lyme Disease Prevention: What You Can Do to Protect Yourself and Your Children

People are talking about Lyme disease this year.  Not just the Lyme community that I connect with on a daily basis. These are normal, healthy, people and they are talking about Lyme.  I am even sensing some fear, so this is great!  More awareness which will hopefully mean more progress for those suffering and better tests that accurately diagnose.  Better treatments?  Maybe a cure!

We are rounding into the end of Lyme disease awareness month and this year I wanted to write a post about prevention.  This is a topic that many of us still need help on, including myself!  So as I am writing this I am also learning at the same time.  I am getting my information from the most accurate sources within the Lyme community.

My main basis of prevention right now is fear.  I am fearful to walk in grass, short or tall.  On sidewalks and trails I walk in the middle as often as I can.  I won't sit in the grass or on rocks.  I wake up in a panic sometimes because there is a crack in my bedroom door that leads outside, I fear ticks might get in and find me because I see deer in my backyard sometimes.

There are 4!

I am fearful of most bugs and animals that would carry ticks on them. When I see children and adults playing in fields and grass my mind immediately goes to how messed up their life would become from one tick bite. I have yet to see a tick in person and when I did years ago I wasn't even sure what it was, but if I did see one I might have a heart attack.  This fear doesn't prevent me from going outdoors and if I have to walk through short grass I will but I'll make sure to check my shoes and legs for ticks, tiny and large.

I don't think that this is too much fear for me to live with though... Nearly 8 years of my life have been consumed, taken over, and some lost from a single tick bite in a state where Lyme disease wasn't supposed to exist.  Not a day goes by that I am not plagued with some form of Lyme symptoms or reminded of what I have lost from this disease. I am contacted on a daily basis from newly diagnosed Lyme patients and the cases of Lyme and misdiagnosis are getting out of control.

So let's get on with it and talk about prevention.  What can you do to protect yourself and your children from destroying the rest of their life.

1.  Educate yourself on LYME.  (NOT LYMES)  There is so much wrong information out there about Lyme disease.  Tons and tons of wrong information.  Even from websites you think you may trust such as, webMD and the CDC.  I get my Lyme information from:  https://www.lymedisease.org/  Also from doctors who study Lyme disease two of them being:
Dr.Richrd Horowitz:
http://lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/dr-richard-horowitz
Dr. Daniel Cameron:  http://danielcameronmd.com/ and so should you.
For accurate information on ticks, prevention, treatment, co-infections, the "big controversy" go to this website.  Click below for some basic information on Lyme:

https://www.lymedisease.org/lyme-basics/lyme-disease/about-lyme/

Know that ticks, Lyme, and co-infections are in every state and many, many Lyme cases go undocumented because they were not reported.  I am an unreported case in the state of Washington because my ELISA Lyme test was negative.  I was also bit by a tick in Bellingham, WA in 2009 and told there was no Lyme disease or ticks in Washington by many doctors.  Many Naturopathic doctors also had little to no knowledge on Lyme disease, one lied to me.  Most of these ND's graduated from the prestigious Bastyr University in Seattle.  One in particular did not even know what Lyme disease was!  No joke.  So do not go by those silly CDC maps, clueless docs, and ELISA tests anymore.

They are bullshit. Go by this map, Lyme literate doctors, and IgeneX Lyme testing.  Doctors will most likely try to tell you that you do not have Lyme and that it is not in your state but they are wrong, uneducated and probably being paid to treat you with medicine for your newly diagnosed MS.  

I stole this from a fellow Lymie over at Lyme Warrior.  It's the most accurate I've seen.

Do not get your Lyme information from the CDC ( I should mention they follow regulations by the IDSA and their guidelines for treatment haven't been changed since 2006):  These institutions believe that Lyme disease is curable and treated in 3 months.  They are the reason why people like myself go bankrupt and die. They are also the reason why Lyme disease is typically not covered by insurance.  They are the reason why Lyme literate doctors, (the ones who actually help us) do not work with insurance companies.  LL doctors risk losing  their medical license because they prescribe antibiotics for Lyme longer than what is recommended by the CDC and save lives doing so.  The CDC and the IDSA is corrupt.  If you don't know this by now, you should.

If you want CORRECT LYME INFORMATION go to:  https://www.lymedisease.org/

This is where you can also find a Lyme literate doctor in your area if you want to be tested for Lyme using one of the most accurate tests.  We should all know by now that the ELISA Lyme test that you would get at your local doctor office will most likely come back negative.  Get tested through Igenex Lab with a trusted LL doctor.

At this point Lyme has been linked to ALS, Dementia, MS, Autoimmune conditions, Fibromyalgia, Chronic fatigue and many, many others.  There is scientific evidence out there that proves this and quite frankly I'm sick of getting into arguments over this topic.  I consider myself a lucky one because I told doctors to fuck off when they informed me I had some of the conditions noted above.  I believe those illnesses are symptoms of something else.  I'm not necessarily stating that they always end up being Lyme but regaurdless, if you are smart you'll find out what is actually causing those symptoms. Do your research, it's out there.  If you get diagnosed with anything that is often confused with Lyme you absolutely must rule Lyme out first through a trusted LL doctor or you risk losing so much more.

2)  Tick Removal

I have seen tick information and removal floating around that is wrong and scares me. This is how you remove a tick:  https://www.lymedisease.org/lyme-basics/ticks/tick-removal/  

All you need is tweezers.  No fancy twisting tools, just tweezers from the bathroom.  Grip as close to the skin and pull directly upwards.  It's done this way because the reverse barbs on the mouth of the tick get stuck easily in the skin.  If the mouth is left in your skin there is a higher infection risk.

3)  What to do after you notice a tick bite and remove it correctly?

This is the most important step you take in preventing Lyme disease and co-infections.  I would not joke around and waste time posting photos to social media.  Spread awareness later, but go get help now.  If anyone in my family gets a tick bite they are heading to a Lyme literate doctor in their area and getting treated for Lyme and co-infections for whatever amount of time suggested by their LL.  No test required.  I advise you all to do this.  Lyme disease and co-infections can diminish your quality of life greatly. Do not take a tick bite lightly.  Do not wait for symptoms or a bulls-eye rash because by then it could be too late and you do not always get a rash.  I can tell you first hand Lyme disease and co-infections are a living nightmare and you do not want what I have.  Don't risk it.  Also, take note that the information floating around that a tick needs to be attached for 24 hours before it transmits infection is bull sheeeeiit.  Again, KNOW THE CORRECT FACTS.

4)  Know the co-infections and other related conditions, such as mold toxicity and POTS.

It is highly unlikely that the tick that bites you is only carrying Lyme disease.  When we spread awareness we tend to just use the term "Lyme"  but for those of us diagnosed with Lyme we are most likely battling more than one infection.  For some it's the co-infections that are keeping us ill.  You can have multiple co-infections that are just as hard to treat as Lyme disease, if not harder.  For example, Bartonella is commonly called Cat Scratch disease it is a co-infection of Lyme but you can also get it from cat scratches or bites, ticks, sand flies, and body lice. Recent studies suggest that it can be passed from mother to child through perinatal transmission just like Lyme disease.  It is insanely common and insanely hard to treat but yet you never hear about it. Pretty scary.  https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/  

We also tend to use the term "Lyme" for all of our other infections that can range anywhere from Epstein- Barr to mold toxicity.  Like I have said a million times you never just get Lyme, your system crashes in the late stages and you get a million illnesses and diseases.  

Now the fun stuff!

5)  Protect yo-self and yo-kids.

I am buying my nieces in Ohio this get up.  Dr. Frid is the reason why you have been seeing information in magazines this year about Lyme disease.  She is a huge advocate for those of us suffering.  She created kids repellent clothing.  Here is the link to children's mesh clothing to protect them from ticks while playing outdoors.  https://www.elenafridmd.com/insectrepellentclothing

I"ll most likely be wearing someting like this for gardening, hiking, camping, fishing, anything outdoors really.

Kidding, but not a bad idea...

6)  Tick Repellent

I am just as fearful of chemicals as I am ticks so I prefer the more natural essential oil route to keep the ticks off me.  Some use those listed below on clothing and skin.  But do research and know what you are putting on your children and yourself.
DEET:  http://npic.orst.edu/factsheets/DEETgen.html
Picaridin:  http://npic.orst.edu/factsheets/PicaridinGen.html
Permethrin:  http://npic.orst.edu/factsheets/PermGen.html#whatis
I use the item below.  Although I just read eucalyptus oil is the most effective natural repellent, which this does not have. 

 

7)  What else to do for prevention??

I grabbed most my information from this page  https://www.lymedisease.org/lyme-basics/ticks/personal-protection/

-Stay away from high risk areas such as:  leaves, brush, grass and fields.

-Dress correctly:  Wear white, tuck pants in socks, spray your clothes and footwear in repellent.

-Use your repellent!

-Check for ticks after being outdoors and shower.

-Heat kills ticks so you can toss clothes in the dryer after being outdoors.

There is also a tick management handbook you can find here:  https://www.lymedisease.org/lyme-basics/ticks/landscape/  It provides information on how to prepare your landscape and chemical control  for your yard.

8) Lastly, the most important:  PETS!

As much as I hate to say it I believe our furry fuzzballs are bringing ticks indoors.  That is how I got Lyme disease.  If you have cats and dogs going outdoors they will have to be treated with some sort of protection against ticks.  Yes, there are ticks in your backyard.  They were in mine.  I really believe this is one of the main reasons there are so many Lyme disease cases.  It kills me now to think about but I used to see little black dots on Dizzy (a dog I once owned) all the time.  I would ask my then boyfriend what the hell they were;  I had mentioned ticks a few times and was disregarded.  Well I realize now that they were ticks, so gross!  Talk to your Vet about how you can prevent your pets from ticks and make sure to check for ticks after being outdoors.  If your Vet tells you that you do not need to worry about ticks and Lyme where you live (very common to hear in the Pacific Northwest)  Educate their asses and use me as an example!

Take the Lyme disease challenge  https://www.lymedisease.org/lyme-basics/ticks/landscape/

Or buy cute tanks and t's to spread awareness!

Lyme disease is garbage do what you can to avoid it.

I was caught staging my Take a Bite Out of Lyme disease photo

Educate yourself on ticks.  I wish I knew then what I know now.  Also, take the precautions.  You know them now so you have no excuses.

Be careful out there!

Becky