Letter To The Editor

I just feel the need to get a few things off my chest: A few things that won't sound pretty.

To every doctor who has ever told a patient their symptoms were all in their head: fuck you. You're a disgrace to your profession, and might do us all a service by flushing your credentials right down the toilet. Healthcare isn't a sitcom whose conflict can be solved in 30 minutes. Get over yourself. Just because you can't find the answer doesn't mean the answer isn't out there. And a little tip: You'd have more time to spend with patients in their appointments if you cut down on the visits from the drug company sales reps. Just a suggestion.

To the insurance companies who won't pay for my medications: you hold real people's lives in your hands. One day someone you love will be told they're not covered for a medical condition or their prescriptions or treatments and you'll realize how truly devastating those words are. To be told you are sentenced to die, probably slowly and painfully, because of money, is the ultimate slap in the face to someone who pays those premiums that keep your company alive. And what of those without the luxury of insurance? Well, those people will know they're going to die just the same, without the patronizing rejection letter.

To city officials and other authorities who say "We don't have Lyme here": You're lying to yourselves, and it's going to cost people their lives. Ticks don't stop at the borders of states and countries. Lyme Disease is everywhere. The sooner you stop denying it the sooner more people will be adequately treated, the more the disease will be prevented, and the more lives will be saved. It's just insanity, not to mention a scientific impossibility, that your town or your state, as well as you or someone you know, would be immune to this disease. Think about it. How can you not see the absurdity?

To those who say Chronic Lyme Disease does not exist: You have never had to suffer the frustration of being denied treatment for something considered curable, only to develop debilitating symptoms because of it. You have never had to watch someone healthy turn into an invalid, have never experienced the pain that engulfs your body, the inability to work, the fear and uncertainty that comes with each new malady that there seems to be no explanation for. You've never spoken to others whose stories are so like your own it's unimaginable that the medical community could turn a deaf ear. You've never had someone look you in the face and say you're making it up. If you had you would never disrespect those whose very lives are stolen by your denial, your ignorance, and your impatience. One day there will be too many voices for you to refuse to listen. One of those voices I intend to be my own.

And to those who still struggle with Lyme Disease, or any condition: Keep fighting. In 1993 I had panic attacks so severe I couldn't attend middle school. Doctors couldn't diagnose me. I learned on my own about Anxiety Disorder.

In 2003 I began having hypoglycemic episodes which I recognized from having a diabetic grandmother. After explaining my symptoms to a doctor who didn't believe what I was saying, I had to purchase a blood sugar monitor to keep track of my blood glucose levels, which were dropping into the 40's and 30's. Falling to those numbers put me at risk for coma and even death.

In 2005 my two year-old daughter began suffering from stomach aches, vomiting, diarrhea, and severe eczema. In 2007 I rushed her to the emergency room with a swollen eye and breathing problems that I knew was an allergic reaction. Three different allergists told me she wasn't allergic to anything. THREE. A blood test revealed severe allergies to several foods, animals, molds, and plants. A normal allergic antibody count is less than 160. My daughter's antibody count was 2,863.

In 1999 I suffered from a cyclical illness of vomiting, fever, and swollen glands for nearly six months and was told it would pass. Nine years later with neurological problems such as memory loss, speech dysfunction, twitching, and vision disturbances, I was diagnosed with Lyme Disease by my cardiologist, who I was seeing for severe autonomic dysfunction. I have been to two endocrinologists, a neurologist who laughed in my face and refused to test me for anything, numerous general practitioners, psychiatrists, and an endless list of other specialists. If only one of those doctors had cared at all back in 1999, my entire life would not now hang in the balance.

And to my children, who I have surely passed this disease onto: I will not stop fighting for any of us. I have no interest in being a martyr, so the only alternative is to live with every ounce of failing energy I have so that we may see a day when this disease is acknowledged for what it truly is: an epidemic that will touch everyone in some way at some time in their lives. I have tried to protect you from everything I could envision from the day you were born. How ironic that the one thing I didn't see coming would be passed through my blood. I am truly sorry, my little babies, and dread telling you the truth when those tests come back. You have been so afraid for me, have seen the pain I have gone through, and I can't imagine how scared you'll feel when you find out you may have to do the same. I can only hope what everyone has told me will prove correct: that children bounce back much more quickly than adults, and because I can only think of good things happening I wish for my oldest daughter's rashes and joint pains to be gone, my middle daughter to be able to hold a dog without needing an epinephrine shot, and my son to never have to feel the effects of this vicious disease as it steals his life away day by day. I would go to the ends of the earth for you, and I won't stop now, no matter how sick I get.

And finally, to my new doctor: Three physicians offices hung up on me when I asked if my children could be tested for Lyme Disease and when I mentioned the word Lyme about myself. You didn't. I haven't even met you yet, and already you've done so much more than 99% of the doctors I've seen. Even such a small unwitting gesture gives me hope. And for now, hope is the only treatment I can afford.