Update Video #2

A few points I want to get across.

1.  Getting treatment for Late Stage Lyme Disease is very expensive.  I am very fortunate that I am able to get treatment, for now!  If you are planning on getting treatment, that is similar to mine, you can be looking at a couple thousand dollars a month.  Lyme Literate doctors do not work with insurance companies. Therefore, you end up paying out of pocket for office or Skype appointments. Visits to your LL  can vary, mine is about $350 once a month.  If treatment goes well I will be visiting her once every 6-8 weeks. Supplements can cost between 400-800 a month.  Antibiotics may or may not be covered by insurance companies.  So far some of my antibiotics have been covered, one particular antibiotic that wasn't covered costs $350 for a month supply.  On top of the treatment, be prepared to spend money on organic foods, yoga, infrared saunas, a mini trampoline, and lots of epsom salts, to name a few.  My treatment outlook is 2 years.  The hard part is that most people dealing with Late Stage Lyme cannot work, or have limited hours a day that they can work.  Currently, I feel good working about 4 hours a day.  I also plan on taking a break with my acting jobs because it's mentally exhausting work and physically painful standing for hours on end, like you have to sometimes.  Also, leading up to the acting job can be very stressful for me, I get nervous that my eyes may swell or my hand, which actually happened to me once.  Pay close attention to this video and you can see a very painful and swollen hand.  I filmed about 8 videos this day!

You can really notice the swollen joint in my right hand about the minute mark.  

2.  Be your own health advocate!  If you know that you are not well  and doctors are telling you that you do or don't have something, but it doesn't feel right.  Trust yourself!  Nobody knows your body more than you. Please take your health into your own hands, if need be.  I did, and i'm very happy I did.

Thanks for reading!

And...The Treatment Begins.

A week from getting my IGeneX test results back I found myself sitting in the office of a Lyme Literate ND, shaking nervously.  Her office was filled with a wall full of supplements, a wild pit bull and a load of books scattered throughout.  My appointment was originally supposed to be for January 5th, but due to a cancellation, I was able to see my Lyme Literate immediately (this is why being super nice to receptionists counts).  My LL did not waste time, she mentioned treatment could take up to two years, so she sent me home with prescriptions, supplements, and a feeling of ease.  I was reassured in a non-controlling tone, that if I did as she said, I would get better.  I trust her.

Here's part of the load, right now I'm taking 47 pills a day.

Late Stage Lyme and why I am one BADASS girl.

One day while searching the Internet for, "Why do some people have a million food allergies"  I came across the blog http://infectiousoptimism.blogspot.com/.  Candice Chronicles her life, living with late stage Lyme Disease.  Two of her blog posts in particular, caught my eye.
This one,
http://infectiousoptimism.blogspot.com/2010/07/25-reasons-why-being-lyme-patient.html
and this one,
http://infectiousoptimism.blogspot.com/2011/05/definition-of-chronic-badass_13.html

In her posts, Candice explains how she could have thrown the towel in and had a pity party from her ailments with Lyme, but instead she chose to have a positive outlook and feels as if everybody battling a chronic illness, is a, "chronic badass."

In case you didn't pick up on it...

The Igenex test results were POSITIVE FOR LYME DISEASE.  I thought I was going to be happy to have finally gotten the answer I've desperately been searching for, but I wasn't.  It tasted bitter sweet, but after a few glasses of wine and a 24 hour waiting period, I feel pretty badass.

Here are 10 reasons why I am a, Pre-Treatment, Late Stage, Lyme Disease BADASS.

1.

 In my five years that I have had Lyme Disease, unknowingly, the only time I missed work was when I got the flu, from the initial infection with Lyme.  Then, a whopping 5 years later, I had to leave a few times due to eye swelling.  Not to mention, upon receiving my test results, even though they weren't %100 clear to me, I went directly back to work and helped people.

2.

I eliminated dairy, gluten, sugar, grains, fruit, nuts, seeds, some herbs, some veggies, adapted a low FODMOP diet, and I can still eat!  The food creations I come up with trump over normal peoples versions. Ask my boyfriend, he'll tell ya.  

3.

Speaking of boyfriend, I was able to keep one!  He dealt with my "mysterious" symptoms.  Can we say, what a great guy.

4.

I can be added to the long list of Lyme patients who have been dismissed by doctors.   I was shunned by my trusting, (or so I thought) ND when he found out I had Lyme Disease.  I felt so betrayed, but guess what? That only motivated me more, to find someone who understands me and will help me.

5.

I worked for 7 months, full time at a Physical Therapy clinic, where I was the only aide to help up to 8, usually elderly patients, with their exercises.  I would spend lunch lying on a heating pad.  Need I say more?

6.

I rekindled a love affair with my ex, named acting.  I've managed to grow my resume full of commercials, movies, a web series, and even spokes modeling, all at my sickest to date.

7.  

This goes in a category of its own.  One of my acting jobs, landed me on billboards and buses!  Even with melasma and spirochetes living in my eyes!!

8.

Because of my job, and a preconceived idea of people working in the fitness industry, I get to listen to strangers on a weekly basis, tell me how healthy I am and how sick they are.  Hmm, I grin and bare it. Please stop judging, you have no idea what anybody is going through based on how they look.

9.

I never gave up.  I knew I was sick and I  N E V E R  G A V E  U P.    I couldn't count on my fingers and toes how many times I've been called crazy by friends, loved ones, and doctors.  But that never stopped me from believing in myself.  I know my body, and when I kill every single one of those little, spirally mother fuckers, I will have an entirely different outlook on life and I can't wait to get there, despite the road that awaits me.   :)

10.

I REFUSE to let Lyme Disease define who I am.  This is a disease that has controlled me long enough.  I will always and forever spread awareness about this disease but I will not scream from the top of my lungs that I have Lyme Disease.  It will never be the first thing someone learns about me when they meet me.  I'm far more interesting.

If you are reading this and don't know anything about Lyme Disease, maybe are rolling your eyes, thinking I'm just another person complaining of Chronic Fatigue, or something.  I've done the same thing, but I urge you to educate yourselves.  If I've contracted this ridiculously hard to diagnose, and treat disease, also, highly IGNORED, so could you.  Do you have a dog?  You just upped your chances.

Please visit  http://www.ilads.org/lyme/lyme-quickfacts.php  for some quick facts.

Watch http://vimeo.com/65479794  only 30 minutes, she's from where I live now and does a great job explaining Lyme.
Also, read the blog mentioned above, to learn about treatment of Lyme and other funny stories.  She's a great writer.

Thanks for reading!

Becky

Results Are in and I'm Allergic to My House

The Lyme test from Igenex is back and the results are in....only I don't know them yet.  Torture!  I was with a client at work when I received the phone call.  A message was left, I called back all stony-faced and was told I need to schedule an appointment the following day to get the results back.  Utter torture.

So I will be seeing my wonderful ND tomorrow, while I skip out of work for an hour. My heart is pounding just thinking about sitting in the doctors office.  Is it Lyme?  Is it some horrible form of Rheumatoid Arthritis? Is the test not accurate?  Either way the outlook is bleak.  I've had three weeks to run this through my mental engine and I've churned the idea that it might not be Lyme I'm dealing with, but some horrible autoimmune disease.  If it was Lyme, I thought about all I would have to endure over the next who knows how many years.  Crazy, is something that comes to mind too.  I've been told by numerous people during my 34 year span that I am crazy, so I won't leave that out of the equation.

A huge part of me wants this to be Lyme, it would answer so many health questions.  I'm scared that it is Lyme, I'm scared that it's not Lyme.  One thing I know right now is that Rheumatoid Arthritis is my worst nightmare, I've given physical therapy to patients with Rheumatoid and it's not a kind illness.

So we wait, until tomorrow, nervously.

In the meantime...

This means you have contracted Lyme Disease

 If you see this on yourself go to the doctor immediately and get antibiotics to treat Lyme.  If you see this on anybody else tell them to seek medical help, you could save someone years of pain and suffering.

This is what a medium size tick looks like in your skin

A part of myself thinks I remember seeing a weird black dot, just like the photo above, stuck in my stomach before a shower one morning.  If I wasn't dreaming, or bat wing crazy, I remember trying to wipe it off, but it didn't budge, so I scraped it off, threw it the garbage and continued on to my shower.

In any case, if something weird is in your skin, don't pick it off and go about your day as if nothing happened. Save the little object and get it checked out.  If a doctor or nurse practitioner, in my case, tells you Lyme Disease doesn't happen where you live, walk directly out of the office and find someone who is willing to listen to you, and help you.  Naturopathic doctors are usually a little more open minded to Lyme Disease, but not all.   You'll need to search for a Lyme Literate Dr. or Nd.  in your area, they will help you.  Deer ticks that carry Lyme are in every state, know that, and prevent it from happening to you.

I almost forgot to mention, I'm allergic to my house now!  If I'm in it for more than two hours I wheeze, consistently.  What's a girl to do?!

Okay, Turns out I'm not so Well-ish

I knew there was a reason I kept that -ish at the end of my blog name.
I knew there was something not quite right.
I cleaned up my diet and starting treating my body right.  I figured out my long list of food allergies, and avoided them.  But something was wrong, the list kept growing and the symptoms marched on.

My cycle went something like this:

-I'd get rid of dairy
-Feel great for 3 months
-Feel like crap again
-Get rid of gluten
-Feel great for three months
-Feel like crap again
-Stop eating almonds, an allergen
-Still feel like crap
-Get rid of sugar
-Get rid of most fruits, allergens
-Get rid of all grains
-Get rid of some veggies, allergens
-Get rid of certain seeds, spices, all nuts
-Get rid of red meat
AND STILL FEEL LIKE CRAP!!!!

With every doctor I've seen since 2010 and with every year that has past, my symptoms only persisted.  Nothing ever got better.  There was a constant decline in my health and well being, turning from a "yes" person to a "no" person.  I no longer went snowboarding, I no longer hung out with friends, I no longer did the things I had always done.  What I did, was come home from work, get in my pajamas and curl up with my dog.

Over the course of four years, I've had some very difficult days.

Rash from hemp milk

Feeling ill with my pup

Swollen eyes from eating at my last restaurant

My own scratch testing I had to start on all foods

And I've had some good days.

Landing an acting job that gets me on billboards and buses

Looking kind of normal, when a friend visits, who I hadn't seen in years

But I feel as though I am living in a body that has been taken over.
Nothing in my body feels like mine anymore.
Are aliens controlling me with a remote or something?
Everything I have done to fix myself has failed and what is peering out of my inflamed eyes, is pain with a glimmer of hope.

I made a lot of changes in my life and I function by the hour of each day.  Justifying became the norm with my symptoms,when I started slurring my words, it was because I gave up sugar.  My muscle pain, well shit I work in a gym, it's filled with muscle pain.  You get the drift, I thought everybody must feel like me.

This battle is making me see how strong of a person I am and I've begun to except myself.  Not give up, just acceptance of myself, something I've always struggled with.

I took this photo April 12th 2011,

Dead in Bed

I would get home from work at about 1-2 pm and lie on my bed, in a constant state of exhaustion, staring into space, physically and mentally lethargic.  I took this picture as a way to document this important moment in my life.  I knew that I should not have felt that way, so I continued to document symptoms.
This moment was the moment I realized something was off.
Did I know what?  No.  Did I tell anybody?  No, I just kept lying there, doing what I could, when I could.
It wasn't until my other symptoms crept in that I realized I had something much bigger going on. I began looking and searching and annoying everybody and demanding tests, until I had a epiphany.

Flash forward to October 14th 2014.  Today I had blood taken and it will be sent out to IGeneX lab in CA, in order to test for Lyme disease.

My symptoms to date in order are as follows:

-Had a bulls eye rash, showed two people, all three of us were clueless, threw some ointment on that bitch, went a away in a week.
-Had the most horrible flu ever, started with a migraine, lasted over a week, almost went to the emergency room.
-So tired and lethargic
-MUSCLE PAIN
-Insomnia
-STOMACH PAIN
-Hormone imbalances  
-Intolerance to foods and allergies
-Dry skin on face and eczema, also melasma
-NO attention span, no longer able to read books
-Muscle ticking and knots everywhere
-Trouble with weight, kept gaining, (Thyroid, T4 not converting to T3)  slow metabolism
-Swelling eyes to food allergies
-Rashes on body from food allergies
-Conjunctivitis
-Eye sight changes from blurry to normal
-Joint pain and swelling in fingers
-Heart palpitations
-Slurring of speech
-Short term memory loss
-Mixing up words
-Loss of muscle tone and strength
-Water retention throughout body
-MORE FOOD ALLERGIES, stomach pain and intolerance's to everything
-Severe eye inflammation and pain
-Toe pain and swelling
-Legs giving out randomly

But I marched on, letting very few know the extent of what I've dealt with throughout the last few years.

I'm not saying I have Lyme Disease just yet, these are only symptoms I've been experiencing since 2009-2010.
The test should be in before the month of October is over, and so the journey begins.

Learn about Lyme disease, educate yourselves, if there a chance I have this, there is a chance you have this.

Go here and watch these to learn!  Now!!

http://www.ilads.org/lyme/lyme-quickfacts.php
http://www.hulu.com/watch/268761
http://vimeo.com/65479794


Thanks for reading, Becky

Dairy, Gluten, & Sugar Free PIZZA

Fast and Easy Pizza!

These are the main ingredients I look for when I'm in need of a quick pizza, that's gooey, bready, and crunchy delicious (it was long overdue). These products contain none of my allergens and were all purchased at my local CO-OP store.

Whoever said that wheat/gluten flour makes the best pizza crust?  I've even turned my gluten, dairy, sugar luvin, boyfriend into a believer.  This is now his FAVORITE pizza EVER!

This crust is thick!  But the top layer turns into a cheesy, doughy goodness!  It "makes" the pizza, in my opinion.

Eden Organic Pizza Sauce has only real ingredients and NO added sugar! It tastes just like you've made it yourself!

Chebe Pizza Crust Mix has a whole list of things you won't find in it, some things listed are: gluten, yeast, soy, corn...the list goes on.  Here is a link to read more about it.  http://www.chebe.com/Products/Dry-Mixes/Chebe-Pizza-Crust-Mix.aspx
Once cooked, the crust is dense and crunchy!   There is no mudslide of toppings off this bad boy, it's perfect straight out of the oven, or cold the next day.

Follow Your Heart Vegan Gourmet Mozzarella Shreds is my favorite substitute for cheese.  I find myself eating it right out of the bag, like the good old days of eating real cheese shreds!  I love how creamy it gets when it melts and its perfect for topping pizza with.

All the other ingredients are up to you!
I chose Isernio's Italian Chicken Sausage (also gluten, vegan, sugar free)
Mushrooms
Orange pepper
Thinly sliced red onion.

The outcome was pure delight and an over-stuffed belly!

Even my little Dizzy Dog couldn't resist the smell coming from the oven!

This is my Face

                                                    


          

#1

#2

             THIS IS MY FACE


















                                    




                                                              THIS IS MY FACE ON GLUTEN

#3 It usually happens to both eyes.

#4 There was no crying all night in this photo...just gluten.

#5 Puff Ball.

#6 This was me trying to make it look normal.

#8 and the melasma.

#7 Notice the sunken eye sockets, dark circles...

Gluten free is a fad, I get it, but in all seriousness there are people out there who cannot eat gluten!  I repeat, they cannot eat gluten.

If gluten does this to my face, you can imagine the havoc it's doing on my intestines and the rest of my body. 

I waited tables for 10+ years and with every fad diet, came a hoard of dieters with restrictions galore.  I rolled my eyes plenty, at the no this, and no that people.  Maybe that's why I'm in the position I am now...allergic to gluten and dairy, I don't know.

One thing I know, is how excited I was to find a gluten free Pho menu at a local restaurant.  I love Pho, and it was the big 3-4, so the boyfriend and I headed out for some grub.  Being that I ordered off the gluten free menu, I didn't specify the extent of my gluten issues, and assumed that everything would be okay.

Well it wasn't.  First came the throat, then the phlegm, which makes it hard to swallow.   The stomach ache and pain is always next,  followed by extreme abdominal discomfort and bloat.  Next thing I know, despite the time of day, I pass the fuck out.  That's all pretty immediate.

The next morning I wake with a swollen face and eyes, then the eczema on the lids appear, soon after. The next 5-7 days are usually followed by an extreme depression, inability to concentrate, super dry skin around my eyes, a weird drunken feeling, stomach pain with everything I consume, and under eye circles that look as though I've been doing heroin for the better part of my life.  Oh, not to mention the long term damage!

The puffy eye photos were taken 02/03/14.  I had gone to a Super Bowl party and made sure to bring the main dish, a lovely pulled pork, for everybody to make sandwiches.  I only snacked on 2 things, that I knew were gluten free.  Soooo, cross contamination is what I suspect happened in some of the above photos, and  is a huge problem for gluten sufferers.  Something to be aware of!

Photos 1 and 2 were taken after being gluten free for 3months.
Photos 7 and 8 were taken after being gluten free for 2 months.
Photos 3, 4, 5, and 6  were taken after 3 months of being gluten free and accidentally being glutened!
You can see from photo #3 the dramatic difference in my melasma from being off gluten.

People!  Remember, gluten sufferers don't want to be suffering from eating gluten.  For us it's not a fad, it's a must, NOT EAT GLUTEN!  So when I go out to eat, save your eye rolls for the asshole who makes you run somersaults around for extra fucking mustard and a perfectly cooked burger.  I never wanted to be, "that person" the one who modifies, and asks a million questions, but at least I'm super nice about it and I and tip BIG, because I've been there!

At Elysian Brewing's Annual Great Pumpkin Beer Festival.

Consuming my last drink of non-gluten free beer.

 This post is dedicated to beer, and my now, love/hate relationship with it.  In all honesty though, I am so happy I found out that gluten was hurting me so much. Upon receiving my news, I cried tears of joy, because over the last 3 years, I thought I was dying a long, slow, death of some insane illness.   I will NEVER look back :)   

This link below also discusses the challenges of eating out gluten free.
http://jezebel.com/5991724/will-everyone-please-eat-gluten--please-because-you-are-literally-killing-me-kind-of

CHEERS!