Tuesday, November 18, 2014

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.

Sunday, November 9, 2014

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,
and this one,

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.

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

Thursday, November 6, 2014

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?!