You may be aware that I've been working (slowly) on finishing the first book in my planned quartet of fantasy novels. I've wondered for a long time why it seems that often, the going gets slow, I go through periods where I can't think clearly, and in order to consume story, I've turned to movies more than books over the past several years because I can't even focus long enough to read a book in its entirety.
Well, I finally have an answer.
I have Chronic Lyme Disease.
Let me enlighten you just a bit, since this is a highly controversial disease (many doctors refuse to admit it even exists, insurance companies won't cover more than maybe a month's worth of antibiotics, and many people have to self-diagnose and then find a specialist before they find someone who believes them).
Lyme disease is a tick-borne infection that originated in New England (Connecticut, specifically). At least, that's where it was first discovered back in the mid- to late-70s. Every year, the CDC estimates that more than 300,000 people are infected with Lyme disease, but only about a tenth of those cases are actually reported.
Because supposedly there's an invisible barrier that prevents Lyme disease from travelling outside of its specific states. (HAHAHAHAHA.)
No seriously. Doctors, insurance companies, and hospitals in most states INSIST that Lyme disease doesn't exist there, because it's only a north-east thing. (They casually forget that people can travel cross-country very quickly with these things called airplanes. Or even cars.)
Also, the ticks that carry Lyme have, in fact, been found in many more states than just those in the north-east.
Here's the story. When I was 7 years old, my first grade class took a field trip to Allaire State Park in New Jersey. While there, I was bitten by a tick, which my mom found on me after the trip and pulled from my skin. Shortly thereafter, I presented with the "classic" bullseye rash (which, interestingly, only about 30-50% of Lyme patients actually ever have). She took me to a doctor, who confidently told her that was definitely not Lyme disease, despite not even offering to test me for it.
My mom believed the doctor. Because doctors are supposed to know what they're talking about. For eight months, I complained of headaches, muscle pains, tiredness, and stomach aches. But as I did have a history of hypochondria and playing things up, my mom thought I was just making excuses to not go to school.
Until she spoke with a fellow classmate's mother, whose son had also been misdiagnosed by that doctor. When my mom discovered there was actually a test to see if I had the disease, she called up the doctor and demanded said test, which he reluctantly administered.
But he called her on a Sunday to tell her the "shocking" results - that I did, in fact, have Lyme disease.
Now, the standard, CDC-approved treatment for Lyme disease - no matter when it's discovered - is 28-30 days of antibiotics. And then, they say, that's enough. You should be cured.
But Lyme disease is tricky. It's an intelligent disease, and can hide itself among cells, cloak itself with an armor of biofilm which makes it resistant to antibiotics, and even lie dormant, waiting. Waiting for the opportunity to strike again.
A year after my initial 30-day round of antibiotics, I started having symptoms again. Again my mom demanded a test. And again, the doctor (a different one, in a different state) called her on a Sunday to tell her that yes, the disease was still in my blood. So he gave me ten days of antibiotics.
Which helped. And supposedly that was that.
But I've always wondered why I was so tired, every day of my life. It was nearly impossible to wake up every morning for school, to the point where my mom actually threw cold water on me on several occasions. I've dealt with headaches my whole life. Back problems. In my early 20s, when I worked at a retail book store, I hurt so much every night after my shift that I couldn't stand up straight, had to hold onto the wall and shuffle to bed. Early 20s, people. That's not normal.
But I never questioned it, really. Because I've always been overweight, and I have flat feet. So I just figured, eh, that's the retail life when you're carrying extra weight and the foundations of your body don't actually support you.
I've had digestive issues. Muscle pain. Joint pain. Extreme exhaustion. All this only got worse after having kids (which experience, in and of itself, was quite harrowing - but that's for another day). Most recently, I've been having ringing in my ears (tinnitus), tingling in my arms, fingers, and toes, and even occasional chest pain and palpitations.
I only finally began wondering if I really, after all these years, still had Lyme disease when one of my friends discovered that her young son had also been misdiagnosed and had Lyme for a year before finally getting properly diagnosed and starting treatment. It renewed the discussion, renewed my interest in the subject.
And I wondered, is it possible? After all these years? Could this disease still be affecting me?
So I began my search for an LLMD (Lyme Literate Doctor). These are doctors, nurse practioners, doctors of alternative medicine, who have gone through specific training to recognize and learn about Lyme disease, its co-infections, and treatment options. Many of them work outside the realm of insurance, since, as I mentioned earlier, insurance companies aren't too keen on paying for multiple medicines for extended periods of time.
I found a nurse practioner who is amazing, and last month I had my first two visits. She ordered a blood draw of 17 vials. Seventeen vials of blood! I've never had that much blood drawn for testing. I knew then that she was thorough.
And the results show that I do still have Lyme disease active in my system. I also have Bartonella, a co-infection I probably got back when I got Lyme in 1988, but they didn't know about co-infections back then, so it's never been treated. My results also showed that I have Hashimoto's disease (a disease which makes antibodies to the thyroid and attacks it) and Rheumatoid Arthritis - both also probably triggered by the Lyme disease.
I finally have answers in my hand.
I began my treatment protocol last week. Hopefully I will start to see some progress, though this first week has had me in bed most of the time, as I've been herxing. I now understand why I've felt so poorly for so long, and why writing my book has been like running a marathon in quicksand.
My nature is to apologize for being slow with this book. But honestly, I'm not sorry it's taking me so long. I mean, I do want to hurry up and finish already, as I have other stories clawing to get out of my brain. But I want to be thorough. I want this story to be right. And I also want to be gentle with myself, as dealing with several now-identified chronic illnesses will certainly take (and already has taken) a toll on me.
I just want everyone to know the why behind my delays (initially I'd hoped to have Book One published last October - HAHAHAHAHA!). Know that I'm doing my very best to bring the fullest, most beautifully-wrought story I can to you, my readers. While it is my hope that Book One will be published this fall, I've decided I'm not making any more promises. My health is more important than that.
Thank you for your patience and support!
**If you'd like to read more about Lyme disease, the ILADS (International Lyme and Associated Disease Society) website has some very good information, and can even help you find an LLMD if you suspect you have Lyme or have been bitten by a tick.**
**Lyme disease has come into the mainstream spotlight recently when both Avril Lavigne and Ashley Olsen went public with their own experiences with Lyme. Other famous actors and writers have also made their fight with Lyme public, and are working to raise awareness of the disease.**