Monday, October 12, 2009

Ashley's Story


I grew up in Northern California. I’m not talking about San Francisco. I was four hours north of there in the mountains.
Like any kid who grew up in the woods; I was always outside, I hardly wore shoes, and I wasn’t afraid of getting dirty. Naturally I wasn’t afraid of bugs either.
I remember pulling a tick out from behind my ear. I can still see its little legs kicking in protest. With a look of disgust, I threw him on the ground. “Yuck”, was about the only thought I had about the experience. I was maybe 10. I don’t think I got Lyme from that one, he was too big.
I also remember getting spider bites. I never saw the spiders but I would occasionally wake up with a big, round, red ring of a rash around what appeared to be an unaffected patch of skin. Sound familiar? Yeah, well needless to say I am no longer so sure about my self diagnosis of spider bite.
It is hard to say when I was actually infected with Lyme. I didn’t really start suffering from an symptoms until I was 21.
In 1998 it started slowly with my stomach. Honestly it was pretty miserable at times but I just ignored it.
In 2000 I moved with my now husband to New Zealand. When we got off the plane I was in bad shape. It felt like someone had stuck a big wooden spoon into me and proceeded to stir my inards.
“Is this what jet lag was”, I wondered?
It quickly got worse. Besides the unbearable pain in my stomach I started having major breathing problems. I just felt like I wasn’t getting enough air. I also had trouble swallowing. The doctor gave me and inhaler for asthma. Ah, it didn’t help.
Life continued on with me in a constant state of panic. What the hell was wrong with me? My boyfriend’s advice- “Harden up Ash.” How very Australian of him.
On a trip to Germany in 2001 my boyfriend declared that the whole city of Munchen stank. Everywhere we went there was a foul smell. I was too embarrassed to tell him it wasn’t the city. Thankful though, that he didn’t realize it was me.
In 2002 we departed another plane, back in the USA. I was bad. Everything I ate or drank seemed to have an adverse effect on me. Mentally I was struggling too. At this point I thought the doctors were right. I was nuts, totally off my rocker. Lock me up and throw away the key!
My family blamed my fiance. My fiance blamed American food. I was pretty sure I was going to die soon. The latest doctor gave me drugs for IBS and acid reflux. Whatever.
I went to the doctors 13 times between January and March of 2003. Lots of drugs and no real answers.
At our engagement party in April, the guests must have thought I was on illegal drugs. I couldn’t even answer simple questions. I remember my mom encouraging me, as if I were a five-year-old, to answer for myself.
Another plane back to OZ and NZ. I was sick of it all now, and determined to figure this out for myself.
My self diagnosis -Candida.
I found a naturopath to help. She confirmed the candida and tested for parasites. I had a lot. She also did a food allergy test.
I took all this information and put myself on a diet protocol. No gluten, no dairy, no sugar, no alcohol, and no meat other than seafood. My wonderful husband conformed as well.
At this point I had added depression and fibromyalgia type pains in my legs to my symptoms. Enough was enough. My new protocol also included exercise. I started with walking 20 minutes a day.
Six months later I was still on the diet, running three miles four times a week and actually feeling healthy.
I felt pretty good in 2004 and 2005. I had ups and downs for sure but they were manageable.
In 2006 we went to El Salvador for two months. Maybe I got a new parasites or maybe it was that my diet protocol had long since flown out the window. Maybe it was the plane rides or too much time living at over 8,000 feet and working at closer to 10,000 feet. Maybe I got re-infected, I still wasn’t afraid of sleeping in the dirt. Who knows, but my health started to slide.
I decided to just accept my fate. I told my doctor that I was cursed with a sensitive digestive system and I was learning to live with it.
In the winter of 2008 the depression returned with a vengeance. I couldn’t cope. I was struggling to make it through everyday. I’m really good at putting up a front though. No one had any idea what I was going through. I wasn’t even sure what my problem was.
I nearly lost my husband because with no where else to find blame, I layed the finger on him. For some reason he stubbornly stood by me. I was lost.
That summer I gave in. Maybe I was nuts like the doctors had been saying for the past 10 years. I went to see a shrink.
Well, she didn’t think I was crazy. She thought I was sick. How’s that for a Catch-22!
In the fall I reluctantly went to see another doctor. It was getting too serious to ignore.
She tested me for everything under the sun. I was surprised there was any blood left in me after all that!
There appeared to be a handful of minor things wrong with me including, Lyme disease.
I didn’t like her. The medications and supplements she put me on made me feel like I was going to die and I kept breaking out in hives. Nothing was explained to me.
I stopped seeing her after two months.
It was four months later when I went to se a chiropractor that I learned about Lyme disease.
He lent me his copy of Under Our Skin. My husband and I watched it in horror. Was that what we had to look forward to? Did I really have Lyme or was this just the latest in the long list of  the so called “diagnoses” I had received?
The LLMD told us about Lyme. He asked questions about my past and my symptoms. Magically all the broken pieces of my life seemed to fit back together.
I had Lyme alright, and co-infections and viruses.
Would I change it if I could?
No. Like so many others I have discovered so much about myself that I would have otherwise never known. I have become a better person because of this disease.
Do I want to be healthy? Yes.
Emotionally I am in a much better place now then I have been in years. Physically I struggle but, there is a light at the end of the tunnel.
Also posted on lymenaide.com

5 comments:

Monkey Girl said...

Oh Sweetie, does that sound familiar. I grew up in the Santa Cruz mountains in the 70's and early 80's. Ticks everywhere, I remember taking one off my sister's back...and of course the dogs. Don't ever really remember getting bit though.
I'm soooo glad your husband stuck it out with you. A lot of people in our lyme support group do not have supportive family and think they're nuts.
Honestly I don't know if I'd be alive if my husband didn't support me. He was(and still is) my biggest supporter. It's amazing how you start to think it's all in your head, when the doctors can't find anything wrong.

Keep fighting!!!

Alix said...

Ashley, I'm so glad you shared your story. I can't get the image out of my head of the giant tick you found from behind your ear.

It's a crime that we have to struggle for so long and endure all the appointments with shrinks. After a long period of disability which began in my late 20s, my dad sent me to the head of psych at University of Chicago. After he determined that I awoke every morning with all these things I wanted to do, but then upon moving realized I was too sick to do them, he wrote up what I called my "certificate of normalcy". I waved that thing in my dad's face and gloated. See, I'm sick. Not depressed. I might be depressed about being sick, but it is clearly not the other way around.

We have to totally doubt ourselves before finally getting the answer. Isn't this a strategy used by the military to break prisoners? Right before water boarding?

Lyme is real said...

Oh, Ashley!

Thank you so much for sharing your story! As we share our stories and can all relate in the symptoms we share, I can't help but wonder why this disease is so difficult to diagnose? Bless the chiropractor who shared his copy of Under Our Skin!

All my best!

Kim said...

My heart just hurts reading this. I'm so sorry for all you've been through. And, I get the new perspective thing. I am a different person having gone through this. I think some people can go through hard things and just end up bitter. Others learn and grow. And I feel like an old fart when I tell people, "you have your health." I'm so glad the psych told you were sick instead of medicating you. I can't tell you how many times anti-depressants have been shoved in my face. Reading everyone's stories is reminding me that I need to get mine up--from the very, very beginning. In high school, with debilitating headaches and mood swings, when I lived in the wilderness, picked ticks off our horses and burned them with a match, and went hunting with my dad. Wasn't diagnosed until 20 years later...

ticksickchick said...

Every time I read a story like this, it hits home. I realize now just how badly I was suffering back in 06/07. Like you Ashley, I put up a good front. I could barely make it from bed to the bathroom and get through my shower so that I could (practically) crawl to work and sit at my desk pretending to work. I even had myself fooled... 'it's not so bad' I would tell myself. I tried to convince myself it was all in my head, as my mother suspected. My mom's only comment with every conversation was "it could be worse". No shit it could be worse, but that doesn't make our pain and suffering cease.

oops, rambling on about my own saga.

so glad your husband stuck by you. I'm one of the lucky few who also have a supportive spouse (if common law existed in CA).

I just agree and really connect with so much of your story. I hope that you're now being treated properly and making improvements. Life can and will be better!