Monday, December 31, 2018

The Time Has Come

So long, Farewell, Avederzane, Goodbye.


  I got sick from a single tick bite in January of 2009.  After going 5 years undiagnosed I was finally able to figure out why I was getting so sick and began to get better.  The last DECADE of my life has consisted of misdiagnosis, doctors appointments, blood work, fear, searching for answers, fighting for progress, injections, dietary changes, the loss of relationships, moves, pills, insurance drama...the list goes on when battling an incurable, uncared about disease.
The last decade has also consisted of learning experiences, a dedication to my health, growth & strength, reflexion, and hard ass work.  I made it out alive and now I have the chance to start over even more healthy than I was prior to my Lyme disease and co-conditions.  At this moment I feel as if my time writing this treatment style blog is over.  Maybe not forever but for now... and I may pop back in with a different focus but currently,  I have a strong will to put it to bed; finish the chapter and start a new book.

Right now is my time to live!  It's time I get to be Becky again and use my body to it's full capacity. The spoons remain abundant throughout my day and I no longer feel the need to reserve energy the way I had to in the past.  I feel healthy and able to control this thing called Lyme...  As long as I keep my health a priority in my life and continue to listen to my body.  Environment plays a HUGE part with remission for Lyme sufferers, hence Yolanda Hadid's recent relapse from a water leak in her home.  http://www.bravotv.com/the-daily-dish/yolanda-hadid-lyme-relapse-update  Mold is huge with Lyme!  Also, any other enviromental chemicals.

I enjoyed using this blog to fulfill my time while in bed after the last dosage of antibiotics for the day or while at home exhausted from simply working a 4 hour shift.  My writing connected me with others battling Lyme and it was a way for me to document my life.  It's how I remember the most difficult times thus far.  I'm forever changed for sure!  I look at the limitations Lyme has given me and I am thankful that I have them because at one point I had nothing but hope. I was a sick, sick body.  This decade taught me a lot about myself!  I am a super resilient bad-ass no doubt about that!  I encourage other Lymies to fight the fight and share your story.  Lyme IS a chronic, silent epidemic and very debilitating; one day the rest of the world will come to understand it.  

I'll always be fighting Lyme.  My doctors remain in my life and will forever!  I love them. Here's the now:

1.  My Aniseikonia from the previous blog post http://brewlifewithlyme.blogspot.com/2018/11/ improved on its own.  The retina specialist was kind and understanding of Lyme disease.  From him I received a great eye doc recommendation in town to help me with all my surface eye conditions.  He also wrote a letter to him explaining my unique situation and determination to fix my eyes.  Today, my eyes are the best they have been in a long while!  I moved into and new place and fear my old was making me ill (always, always follow your gut feeling).

2.  I got my one and only amalgam filling removed a few months ago.  What a drama that was.  I went back several times to have her file down the filling because I was unable to chew on the left side of my mouth.  I am worried about that tooth, but for now chewing is okay and no more metal!

3.  I moved again.  This is the 8th time since January of 2015, right after I started Lyme treatment.  Although it is an old beautiful, unique building my health is completely fine in it!  The temporary place I stayed prior was not making me feel great.  I love love love my new place and plan to stay in my new city and apartment for a while and see what happens.  The neighborhood is super cute but a lil more ruff (I speak dog) than expected.  I found myself in quite the screaming match with a crack head in the grocery store parking lot a week after moving in.   He caught me on the wrong night... I'm so glad I have that feisty-tough thing going on when I need it though (thanks NYC). I was gifted some pepper spray and it was perfect timing because I can't move my arms right now to fight so I'm confident I'll take anyone down next time with a quick spray.

Perfection-Becky style!  Almost, minus some eucalyptus...pillows...and blanket...in a pink/salmon color and...minus the VOC'S this couch is off gasing.  😷 Didn't even think of it until I felt it and put two and two together.  Airing shit out now!

4.  I am doing a trial without my mast cell medication, Ketotifen. After the move I'm doing quite well without it.  Currently, I am only taking thyroid meds T4 and T3!  That's it! Well, besides loads of supplements- that never stops. 

5.  I work out at the gym 3-4 days a week and I am strong and can happily say I'm pretty ripped right now!!!  My workouts are high intensity cardio and heavy weight training.  gRRR. Super happy with all my progress over the last year, I can def hold my own in a bar fight, if needed.
Also, since my battle with Lyme began I have indefinitely figured out why I struggled with my body goals despite how insanely hard I have worked.  p.s. It wasn't my dead thyroid. P.s.s. I am a trainer and can help you too. ;)

6.  I was getting regular chiropractic adjustments and massage therapy.  Usually massage is great, it has been the most beneficial thing I have done for my body.  This last one, not so much.  It caused compression damage to the Brachial Plexus nerves in my cervical region, both sides and thoracic nerve damage, hence some scapula winging.  I was unable to raise my arms upon getting off the table.  The next day I was evaluated by a chiropractor and he led me to believe it was from Lyme disease, my chest workout the day prior, or a bulging disc that randomly appeared after having released trigger points in my cervical region.  Being my biggest health advocate that did not sit right with me and I knew I needed a second opinion by a medical doctor and I even got a third opinion!  Both doctors confirmed nerve damage from a massage.  Long story short it was painful, scary, and I spent 3 days crying.  There was a lot of weakness and I struggled with everyday things like getting dressed, washing dishes, picking up my dog baby, and blow drying my hair.   I was prescribed muscle relaxers, opioids, and referred to physical therapy.  I was devastated to lose all the strength I worked towards this last year; Then I watched the documentary on Stephen Hawking and realized things could be worse.  I stopped crying, researched and took action.  4 weeks out I am regaining strength and having less pain.  I am unable to perform basic exercises that I have to show patients on a daily basis and will remain in PT for a while.  

7.  I continue to eat a strict diet of veggies, dark chocolate, and protein. ;) To me it's not a diet it's life and I feel amazing when I eat like this.  I enjoy some kinds of alcohol in moderation and eat sugar rarely; if someone (Melissa! pear tart, so good)  bakes something I can eat.  I refuse to let Lyme take away the small joys in life.

In my personal life I am single....and dating.
Boone, my dog baby is a total shit sometimes but I couldn't imagine my life without him.  All the walks...  ALL  THE  WALKS.


I will begin back in school at Central Washington University's online program this March.  My focus is public health and communications.  This upcoming year I will be getting more involved in media, public television, and marketing in the Spokane area.  Acting and theatre is something I will always be a part of and I have some upcoming voice over auditions.  This blog made me realize how much I love writing, therefore I will find a way to do it.


More to come on my Lyme disease/cookbook project you can find at beckydsmith.com

LYMIES:
My advice to you is don't ever define yourself by this fucked up disease and don't ever let anybody define you by your fucked up disease!  In the beginning doctors tried to always tell us we had everything but Lyme;  Be forewarned, now that we know we have Lyme and vocalize it, the docs that don't have the answers to your health concerns, unrelated to Lyme WILL try to blame it on Lyme.  Don't let ignorant doctors do that to you!  It is very unprofessional, it puts you at risk and is outright dangerous.  The biggest health advocate for you is YOU.

You can find all my Lyme disease advocating projects on my website under my Lyme disease and Advocacy page  http://www.beckydsmith.com/lyme-disease-advocacy-1/  

You can always find up to date info at http://www.beckydsmith.com/
I will never stop fighting for awareness, proper testing, and proper treatment for Lyme disease.
If I can help you in any way, let me know!

My last YouTube treatment video perhaps?!

I wanna thank Dr. Susan Marra, Dr, Eric Chan (THE BEST), Dr. Kelley Evans (could not have done ANY of this without her), All the pharmacists and assistants at Haggen pharmacy in Bellingham; My dream team.  I want to thank my mom, sister Heather, cousin Laura, Uncle Andy, Aunt Nancy, Aunt Susie, Ella, Lila; Although far far away you've been there the whole time and never thought I was crazy.  My dad who left us a year ago, rooting for me.  I want to thank those of you who attended the fundraiser put on by my AMAZING cousin Laura in Cleveland, Ohio!  My friends-My loves.  All who have supported me, sent me items and messages, and followed my story along it's way.  You guys helped me get through this, you really have no idea.  Thank you for that.  Now I'm gonna go celebrate with my dog.  Happy New Year!

Nothin But Love, 
Becky












Friday, November 9, 2018

In the Blink of An Eye


November 16th marks the 4th year reunion of the day I got my positive Lyme diagnosis and began treatment!  That diagnosis came 5 years after getting bit by a single tick.  I don't really have any crazy feelings about it this year.  Fighting Lyme disease is a life long expedition and I've welcomed the undertaking.  I am happy to always be propelling in a foreword direction with my health.  The leaps I have made this year have been profound amidst a fierce battle personally, professionally, and within my family.  What I want is for someone to wrap me in their arms, see how far it has taken me to get here, and tell me how amazing I am for doing so! 


I woke up on Tuesday August 28th and could not quite see right.  No biggy, this happened when
undiagnosed with Lyme, it'll go away I thought.  I couldn't pin point exactly what was going on with my vision but figured it must be from the "flare" I was in the final stages of https://brewlifewithlyme.blogspot.com/2018/10/the-flares-are-fo-real.html.  I waited a week and my vision was still screwy.   Perplexed, I went to the eye doctor.  I had been to this eye doctor a year prior so he was familiar with my Lyme eyes.

The assistant tested my vision and when the doc came in I protested how upset I was that I will be needing glasses!  He gave me that you're a crazy Lymie look we're all too familiar with and noted that my vision tested nearly 20/20.  I looked around the room with utter confusion because it was obvious to me that I could not see correctly.  He decided it must be related to Lyme and said it should go away soon... and I threatened him that I would be back if it doesn't go away!

The next week I spent nearly hitting bicyclists on the street, catching myself from falling backwards on the stair climber from disorientation, and unable to read, write, or type.

I tried reading glasses while doing a castor oil pack and only got headaches.

I also starting blaming my 100 drop a day habit...

After some experimentation and lots of weird looks from my co-workers I realized I was seeing images in my left eye remarkably smaller than the images in my right eye. I researched this odd occurrence and the name for it is: Aniseikonia.  Back to the doc I went;  Once there he informed me that he has never in his very long career, ever saw somebody get this condition.  He confirmed my diagnosis.  Oh joy I thought, understanding the causes of Aniseikonia.  

I knew at this point that there were three causes:
1.  A brain tumor in the occipital region of your head
2.  Something wrong with your retina
3.  Some people rarely get it from eyeglasses gone wrong.

We decided the first step would be to take a look at my retina.

Some photos were taken and while waiting for the results I could not hold back the tears.  I was overwhelmed with sadness at the thought of having something else wrong with me  :(

Doc came back in and told me he found something on the images that would most definitely be the reason for my seriously messed up vision.  It appeared to be fluid that built up from a possible tear or hole in my retina. Eeehhhh.  We can rule out a brain tumor, so that's great because in my family that is unfortunately common.  But what now...surgery...on my eyes...Eeeeehhhhh yuck, noooo!

The doc applauded me on coming in and telling him what I had.  He said because of my 20/20 vision he would have never checked the retina.  He didn't even know what the next step would have been if we hadn't found something on the images!  He was very impressed by my research and knowledge.  I simply said...This is what I do. I figure my health shit out because I seem to be the only one who can do it.

Off to Spokane Eye Clinic I go.

1st time getting my pupils dilated.  I went back to work like this.

Turns out I do not have a hole in my retina, just some fluid build up.  This is rare and this is caused by Lyme disease.  We took more photos of my retina at the eye clinic and the fluid is getting smaller from the first photos taken with the doc.  I will be returning to the eye clinic at the end of November and if the hot springs on my retina remains then surgery is an option.  It's been about 2 months since this whole thing began and my vision is returning to normal.  I am not running over bicyclists or falling down from disorientation at the moment.   In fact, I was able to take a road trip back to Bellingham for a very exciting project I'll share at a later date.  I have a theory as to why this happened and how to fix it.  I'm on it!




Thanks for reading, Becky


Friday, October 12, 2018

The Flares are Fo Real


I had about 3 months of glory this summer!!  My health was back to a place I remember dreaming about while writing this post http://brewlifewithlyme.blogspot.com/2016/02/what-do-i-even-say.html.  

Then I had a flair and realized well FUCK....I'm sensitive. 

My songs coincide with my feelings if you haven't noticed through my past blog posts.  So it should be no surprise that I walk around singing a song like this when I'm feeling sensitive. 




The first time I remember being told I was sensitive was at my grandmothers funeral.  I must have been about 7.  The tears could not stop streaming down my cheeks as I met the eyes of one of my moms cousins.  I remember feeling bashful; unable to control my emotions and scared. My mother looked at me sitting in the same pew I once sat at with my grandma and told me I was sensitive.

Today I'm talking about a different kind of sensitive.  The kind of sensitive that doesn't show itself as a face full of smeared mascara.  It's the internal scars of what's been going on within me this last decade and it slowly reveals itself at any opportune moment.

I had some learning experiences this August/September and I also had some things to re-learn after feeling well and forgetting I have chronic Lyme.   Letting up on very important treatments can have long term detrimental health effects for those with chronic Lyme.  September was a warning and a reality check for me as to how scary and REAL chronic Lyme disease is.  Isn't it lovely though, that even for a short bit I can say I had forgotten I had Lyme?


He keeps an eye on me but doesn't tell me about the chocolate on my mouth.

My gains:

1.  The methylation supplement 5-MTHFR (active B) that I take for my duel genetic mutation C677T and 1298C is very important!!  I have a flair of sorts that causes extreme fatigue, muscle soreness, and more if I run out and don't take it for a week or two, or three.  The great news is that I finally see the connection with this particular supplement and I have backup bottles on hand from here on out!

2.  Any hormonal change can disrupt my sensitive self.  Keeping up on my compounded T3 and Levothyroxine is a must.  Taking 5,000 IU of Vitamin D3.  NOT taking any other form of hormonal pills, such as birth control or Levonorgestrel.  Day to day and monthly hormonal change is fine so long as I'm balanced.

3.  I am sensitive to my environment!  Yeah yeah yeah, I know this already.  The molds, chemicals, and allergens...but summers in Spokane welcome a new kind of environmental challenge.  Smoke from forest fires.  Breathing unhealthy air can make a healthy person sick.  When I'm exposed I have a painful flair in my muscles of the mid-thoracic region. This means air filters, closed windows, and staying indoors when the air quality is poor.

4.  HORNET STINGS!
Holy shit, I've had two this summer.  Lucky for me a hornet nest lives in my front stairwell.  Both stings were on my calf.  I had pitting edema and a whole body reaction of pain with the first one.  The second sting nearly sent me to urgent care;  I was stung in the same location on my calf!   The second sting swelled everything under the knee, including my ankle.  The swelling lasted 7 days and got continuously worse until day 5.  The entire area was warm to touch and itched like a giant welt!  If there's a third sting I'm gonna be in trouble.  I learned from the first sting and administered ice right away, elevation, Kinesio tape for swelling, and detoxed with supplements.  I was able to avoid the whole body reaction from incorporating the modalities mentioned above.


Sting two

The reality is that things effect me.  Minor things that do not effect most people can and most likely will make me sick.  This is something I have to be prepared for and I have to accept.  It's hard to be the person that needs to be looked after in way, is how I feel.  That's just not how I've rolled throughout my life.

With all that said, on a positive note I visited Montana last weekend and I've noticed I've become way less sensitive to foods at the moment.  I was able to take less precautions and get away with eating under less strict Becky guidelines.  It was impressive, not even an eye swell or an upset stomach out of the whole weekend.   This is great for me.  Huge improvement in that department.  I'm feeling good again, learned my lesson, preventing, and prepared for future obstacles.

Feeling good should by no means be forgetting to take care of myself!  This hiccup has had consequences that I am now dealing with on a daily basis.  Unfortunately there is some bad news that involves my eyes.  Surprise surprise.  My eyes which I have already mentioned in nearly every post since starting this blog have been my worst symptom.  This time I'm scared. For good reason.
We'll talk more in the next post about that.

Also November 2018 marks the 4th year since receiving my Lyme diagnosis and beginning treatment.
Thanks for reading!





Friday, August 17, 2018

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









Thursday, May 31, 2018

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.





Friday, May 11, 2018

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



Sunday, March 4, 2018

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

Thursday, December 21, 2017

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



Thursday, November 16, 2017

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.

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.


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

















Wednesday, October 18, 2017

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