New Religion (Part 1)

Okay, so here it is. I have been putting off writing about this for some time now because I was not sure how things were going to go. It's like anything new, at first you're unsure, but eventually you reach that point where you know this is simply how it's going to be from now on. There have been many points like that in my life; when I decided to marry my husband, when I realized I was six weeks pregnant for the first time, when I knew I wasn't a baptist anymore, even when I finally accepted my diagnosis of Lyme. Now the newest point of no return I've reached has been one that's definitely been a long time coming. And even though it is "just a diet" I feel like it's the culmination of a million tiny things that have been telling me for my entire life this is the right thing to do.

When I was a kid, my grandparents had a farm out in the middle of nowhere in Missouri. Living with them, I ate eggs straight from the chicken house, drank (and swiftly discovered I was allergic to) milk directly from the cow, helped harvest fruits and vegetables from their large garden and tiny orchard, and watched the heads get cut off the turkeys in preparation for Thanksgiving. I took a bath in a bucket outside in the summer, hid in the flooded cellar during storms, had cats, dogs, and hens as pets, got flogged by guineas for chasing their babies, and of course was constantly covered in ticks. So it's really no surprise I've seemed to come almost full circle back to that life, being a vegan raw foodist now with Lyme disease. It almost seems like kismet. It almost seems like I was led by the hand.

All my life I have struggled with improper food choices. My mother took care of my brother and I alone; we were poor and could barely afford peanut butter and jelly, forget about anything nutritious. After moving from my grandparents' I became the average processed-food fed kid, and it played hell with my body even when I was young. A good portion of my childhood was spent vomiting, and that is no exaggeration. I always had "the stomach flu". I was skinny as a rail and my grandmother constantly poked yogurt and vitamins down my throat when I'd visit her because she thought I was malnourished. I had problems with hypoglycemia as early as seven years old. Grandma was diabetic and I can remember her coaxing me to let her check my blood sugar and how much those old-school lancet pens hurt my fingers. But being the kid I was, I paid no attention to my health, constantly in my own make-believe little world. However, I did start policing my sugar intake after one particularly harrowing day of eating nothing but oatmeal creme cakes and marshmallows followed by a night of violent illness. It wasn't the first time I'd made myself sick with food, and it wouldn't be the last.

Even as terrible as my diet was, I was never an overweight child. Perhaps it was genetics, perhaps it was my unintentional almost-bullimia. You can name any food; I've barfed it up. There were so many things that did not agree with my stomach as a child and thank God I'm smart enough to stay away from some of those things now. Food allergies run heavily in my family, but I was never officially tested; I just learned the virtue of avoidance. Even so, just a few months ago I was voraciously addicted to dairy products and chocolate, and their immediate effects went not unnoticed, but unheeded. How many times did my husband say to me as I grabbed a pint of chocolate milk to drink while we shopped: "Are you really sure you want to do that? You know what's gonna happen." How many times did I say on the ride home, "I'm gonna puke."? Too many to count. But old addictions die hard, and it took (and will continue to take) the same cognitive decision-making it takes every time I see a cigarette; a conscious decision that I DON'T WANT THAT. Indifference is definitely a work in progress.

It was really in 2003 that I thought about changing my diet for the first time. I'd just started to really feel sick and was following a diet recommended by a nutritionist to minimize my hypoglycemia. I kept detailed records of everything I ate and what my reactions were. I lost the baby weight when I took a bad antidepressant and started walking home from work every day. A doctor I saw told me I was anorexic, which was ridiculous. When I asked him about heart palpitations he said there was no such thing. From out of all that began my obsession with nutrition, and I experimented with different diets, none of which helped my blood sugar levels. After moving to Kansas and "starting over" so-to-speak, I became concerned with the amount of processed food my kids were eating and wondered aloud if what I had suffered through as a kid had something to do with how I ate. My husband and I talked about cutting out processed food, which back then with my limited knowledge meant no more pre-boxed dinners. I started to actually learn what the words on the nutrition facts box meant and which ones were bad and good. After having my third child and failing to lose the baby weight that time, I sort of resigned myself to the fate all the other women in my family had fallen victim to: Rising weight, thyroid failure, and diabetes. While pregnant I had been good at following a strict diabetic diet, but all this seemed to make no difference to my weight. I decided I was destined to be fat and gave up after two years of that diet. The pounds had continued to pile on until I didn't even recognize myself anymore. And I was definitely sicker than ever, with undiagnosed Lyme and all the problems it was beginning to cause, which overlapped the problems the extra weight was causing as well. I was a regular hefer. And I was sick as a dog.

The more ill I became, the more distrustful of medicines, doctors, and food I found myself. My daughter's severe food allergies and the horrors of reading misleading and often outright blasphemous labels allowed me to see the disgusting underbelly of the food corporations. I became interested in cancer prevention and macrobiotics. I avoided pills or anything that would cause me to lose weight too quickly because I was already having heart and blood sugar problems. I wanted to find one answer that explained everything. One way to eat that was a multi-faceted solution. Something that assauged my distrust of Big Food and Big Pharma and protected my failing immunity. Something that gave me confidence in my own body's ability to protect me from illness - a confidence I'd never had. I slowly realized that I HAVE BEEN SICK MY ENTIRE LIFE. And if I looked around at the world, my story was the same as everyone else's. But the difference was I was going to do something about it.

Before I sound any more like an ad for TinyWaistPills, Inc., I'll sign off and continue more later. Stay tuned for Part 2, The Vegan Vampire...


Turning the Corner

I have been inundated with life events, but have not had the energy to type most of them out. Such a separation has happened between me and the health I pictured for myself for so long, in more ways than one. So a quick update on some things that have happened, and then more about what I hope is to come. Deep breath...

When Em's tests came back positive and the three or four days of total devastation/relief I allowed myself had passed, the smoke settled on something more awful, something I couldn't wrap my head around: My husband did not fully believe the test. Now, over the last several months I have filled him in on Lyme and its controversies but I'm not sure how much he really understood. I'm not sure how much he's researched and read on his own and how much of it he really believed. One thing was clear though: he did not think the bicillin shot (especially since it was so strong, not to mention expensive) was the best way to go for Em's treatment. So we scheduled her an appointment at a very popular children's hospital in the Kansas City area and met with a doctor there who seemed willing to treat her (even though she did not have the five positive bands that meet CDC criteria). I tried to be hopeful over this appointment, though I knew what would happen. And happen it did: This doctor downplayed each of her symptoms; the cyclical fever and vomiting since babyhood, the joint pain, the rashes, the sudden onset of eczema and allergies at the age of seven. "Those aren't symptoms of Lyme," he said. When I asked him if it was possible Lyme disease was lowering her immune system to the point where she was picking up every "bug" that came along (hence missing weeks and weeks of school and having strep throat three times in four months) he actually said, "There is no medical evidence that Lyme lowers your immune system."

Choking back an incredulous laugh, I snipped, "I'm sorry, I don't agree with that. You're telling me a spirochetal bacteria (just like syphillis) doesn't lower your immune system when you're infected with it? You're telling me I haven't ran a fever since 2003 because my immune system is working properly?!"

A few days ago when all her tests came back "normal" as I knew they would, I asked the nurse how many positive bands were showing on Em's Western Blot. "I'm not sure what you mean by that," the nurse said. So she probably also didn't know what I meant when I screamed, "Respected Children's Hospital FAIL!"

Meanwhile my husband's Lyme test came back with one positive band, but some doctors feel one is enough. I know my husband has bartonella; the signs and symptoms are all there, not to mention that I have been dealing with it as well. I've been suffering from horrible chest pains that feel like a spirochete drilling through my heart muscle; I've started taking Prozac again and have been downing the Xanax like candy. None of this has been helping much. My anxiety is tolerable, but my Lyme treatment and my daughter's treatment is on hold; my husband's is currently nonexistent. Lately I have felt the need to do something drastic; the kerfluffle over healthcare reform and the look of stupidity bestowed on me by each and every doctor I visit has caused a rift in my space-life continuum. My stomach has been in knots for two months and I can't keep anything under control in this house. We're overrun by brown recluse spiders, there's clutter everywhere, I have no energy...I just know I can't go on like this. So that's why what I have been planning must happen. And don't get excited; it has nothing to do with burning anything down or doing anything remotely postal to anyone else. But it is the path many a Lyme-laden sap has taken when the world of modern medicine gives us a pearl necklace. And it is frightening, but we all know it has to come to this. That's right, motherfuckers. I'm going holistic.


The Day the Earth Stood Still

I could not think of a better explanation of the events of the past few days...it's like I've been frozen in time, and it all began with one moment. It's funny how something can take you completely by surprise even if you were expecting it all along.

A few days ago I called my primary care physician to see if their office had received my children's Lyme tests that had been forwarded to them from Lab Corp. During the course of the wait I had gone back and forth over what fate I was rooting for. If the results were negative, I felt I would be happy but suspicious and skeptical; if they were positive I would be alarmed, devastated, and relieved. Given the sketchy symptoms of each of my little ones I hoped I didn't have to be skeptical. While in the midst of panic I will often try to control the situation by imagining every possible scenario that can play out (superstition convinces me this will ensure the best outcome somehow), and ultimately the one that never occurs to me is what unfolds before my eyes. I did not see in the proverbial cards that one child would test positive and two would not.

I was standing on my front porch when I received the call. Devastation did not even have a moment's breath to settle in before I was being chastised by the nurse for taking my child to a specialist. I wanted to reach through the phone and wring a neck or two. This from the office that refused to test my kids in the first place, hence the visiting of said specialist. And to add insult to injury: "The test shows she HAD Lyme disease, but she's over it now." Really, motherfucker?? WOW. These people are college educated and spent how long in medical school?

Yes, the lupus-esque butterfly rash, unexplained fevers since babyhood, monthly recurrence of strep throat, muscle aches and numbness definitely suggest she's "over it". Oh, and how about that whole SHE'S NEVER BEEN TREATED FOR IT thing?

In a rage, I peeled out of the driveway after insisting (against immense reluctancy on their part, once again) on picking up copies of the results in person. By the end of the 10 minute drive I had cried out most of my anger. I tore open the envelope holding the results in the parking lot so I could see them for myself. I have to say, they were impressive. My little E, only 7, positive on both the ELISA and Western Blot tests. I knew then that this is real. I have passed this horrid disease onto my child.

Little E had been waiting for those results too. Though we'd decided to delay telling her, she began to ask questions until I could only let her in on the truth. She simply cried. But then her face brightened, as only a child's can. She was like me now. And the worrying we'd both done from not knowing was finally over.

Of course a negative test does not mean my other two children are negative. And my husband has an appointment to be tested as well. So many uncertainties and I couldn't think straight. I could only focus on the swell of fear rising to a crescendo inside me.

At home I let my husband ponder the possibility of false positives and got to work googling the names of different tests. I asked my online lyme network friends about them. I buried myself in the details. And I forgot how hard it was to get someone to treat this disease, even though I'd just gone through it for myself. The deja vu was too little too late as I sifted through names of doctors and heard the receiver click in my ear again and again. We don't treat Lyme. We treat acute Lyme but don't have a license for children. There's a waiting list a year long. Ask your PCP. No one understands how hard it is to find one doctor to deal with Lyme until they have to look for themselves. No one realizes that this is the disease doctors don't want to diagnose, treat, or even have mentioned in their offices. Lead after promising lead became a dead end. And I felt so much more insulted than I had when searching for a doctor for myself. This is a seven year-old child, I told them. Have you no shame? How will you sleep tonight after turning her away? And yet they must have; the clicks and refusals continued until I just couldn't take another.

In desperation I twittered about my dilemma. Only others with Lyme know your devastation, your frustration, your fear that your child's fate lies in your hands. So many rallied to my side, and I could not have made it through that day without you all. It is because of your help that I have back up plans for my back up plans.

Then once again, a scenario occurred that I could have never imagined. Today I received a call from the local Health Department, requesting an interview about E's positive tests. They informed me that without the bullseye rash or Lyme-induced meningitis or encephalitis even two separate positive tests would not be reported as a case of Lyme for the county. Those reporting guidelines were coming from the CDC, further narrowed by the KDHE. I primly informed the lady caller that the guidelines needed adjusting, and bemoaned my situation to her, hoping I was one of a thousand who'd told her the same thing and that such repetition would create some kind of impact. Instead she promised to find out more information and get back to me. I hung up with a shrug, recognizing that old trickery - anything to get a preachy self-proclaimed activist off the phone. Then the oddest thing happened - she really did call back. A few hours later there was a message on my voicemail with a referral to a new Lyme clinic opening up in the Kansas City metro - by a doctor whose name I'd been given months ago. (I'd been told this doctor had left Kansas to pursue a license in another state, and apparently that state had been Missouri.) So I filled out an online application and if the website is true to its word, I will hear back about an appointment for E in 24 to 48 hours.

Since receiving the results of these tests, something has changed inside me. I am no longer pushing myself for myself to achieve the dream of being well. Within that, there was always the option of giving up. Now that I know I am fighting for my little girl as well, giving up is obsolete. There is no such thing. It doesn't exist. I have no doubt this will be a long, hard fight. But we're going to win. I think we're both up to it. I know I have to be. Rivulets of pain streak across my head, the words I write seem to make no sense, and my hands turn to claws as I type. I will not let this happen to my daughter. The CDC won't let her be a statistic. And for very different reasons, neither will I.


All That's Happened

It is so amazing how quickly time passes when there are things that need to be done. I have not updated in so long I probably won't remember everything that should be reported, if I wanted to stay true to my original theme of What Happens After Diagnosis...or whatever it was. But a lot has taken place, so I will try to lay it out as chronologically (wha?) as possible. There have been rises and falls, but hopefully I can sort it all out in my memory as to which is which.

"Lyme is like a box of chocolates..."

First there was the rash. One day after a particularly bad bout with a Flu Pattern, my scalp started to hurt, feeling like I'd plunked a "pain helmet" on top of my head. The pain progressed throughout one day, and the next morning I noticed when I pulled back my hair a red rash scattered all over the top of my head. Horrified, I went to the doctor, but no one could tell me what it was (of course). My Lyme doctor thought it looked like bartonella (aka cat scratch disease, a lovely co-infection of Lyme), but couldn't be sure. Everyone else said it looked like lice, by which of course I was more horrified and disgusted, but there were no bugs to be seen, no other telltale signs. I was given an antibiotic to clear it up, and got through a few doses before starting to feel sick (probably from a "herx") and stopping. Gradually it did clear up on its own, though I have had a few recurrences in smaller patches since. I also noticed more symptoms as the rash ran its course...like a frightening crawling sensation all over my head. Out of curiosity I read a little on Morgellon's disease, which is thought to be closely related to Lyme, and found it can start on your scalp, and one main symptom happens to be a crawling sensation on the affected area. You know...it's always something. You can't say life is predictable when you have Lyme.

Closing Up Shop

Not long after that ordeal, I called to reschedule another appointment I had with my Lyme doctor and was shocked when the receptionist told me she didn't know when to reschedule me because they weren't sure which day they'd be open again in the future. When I asked why, she put me on hold, only to return and hurriedly promise the doctor would give me a call later. That was over a month ago, and their phone now only rings endlessly when I dial it and there is almost no trace that they've ever been in that office. The whole situation is just unbelievable to me. After being diagnosed with Lyme I read horror stories about how hard it is to find a doctor, about how they are chased out of towns, lose their licenses or go bankrupt, leaving their patients high and dry, but I have to admit I was skeptical until it happened to me. The worst thing was that I had had my son tested for Lyme a couple of weeks before, and now I had no way to retrieve those results. I called the lab that held them and found out my doctor had closed his account with them, and they weren't allowed to release the tests to just me for some reason. This was when I stopped the denial and realized, Yes, this has really happened. It was absolute devastation to say the least. I took a deep breath, had the tests rerouted to my primary care physician (and a painful decision that was, because he had refused to test my children in the first place and I was very uncomfortable with what might happen to those results once they reached him), then waited. I am pleased to report my son tested negative, and we probably have a stay in the NICU to thank for that; he received heavy antibiotics for a length of time after his newborn tests revealed an "unidentified organism" swimming around in his blood. Heh...wonder what that could have been??

The New Me

In the middle of all this I had the results from my sleep study to contend with. I had stayed in this clinic for the night because my cardiologist thought I could have sleep apnea, but with the amount of tubes they put up my nose and hooked to sticky bandages all over my body, I'm not sure how they expected to produce a true "just like at home" sleep pattern to gain insight with. (An aside: At this moment I am being vague about the study because I can't remember if I've already written about it; if I haven't I'll post about it in greater detail some other time. Damn you, Lyme.) At any rate, the results were that I had "hypersomnia", or I slept too much, somehow, and the test also revealed I could have a little sprinkle of narcolepsy as well. "Oh yeah," he said, "And you have high blood pressure." Walking out of that meeting I was depressed, disgusted, at my wits end, and, I knew, I couldn't take this anymore. With high triglycerides, high AND low blood sugar, and now elevated blood pressure, (couldn't even THINK about the narcolepsy thing) I was just one stop short on the train to Heart Attack City. Of course, I wallowed in self-pity for a bit. But when all the ice cream was gone I decided I had to take action, and I had to do it right then. I am 28 years old and I am not going to die a fat cow. Fuck this. I got back on my diabetic diet (hardest fucking diet in the world to follow, because mine only allows 1500 calories a day) and started doing ANY exercise I could muster the energy for, even if was just drinking more water so I had to walk to the bathroom a few extra times. Eventually I started to feel a little better, and when my husband bought a badminton set it only took a couple of times of kicking his ass to make it almost a daily ritual. I have to say something has definitely shifted in my recovery; over the last couple of weeks my symptoms have been significantly more quiet and a Flu Pattern I felt emerging faded away without even really trying to mess with me. I lost five pounds (which I quickly regained in puffiness, because I have a lot of swelling and refuse to take a water pill which causes low blood pressure swings, something I already have to contend with), but when I deflate maybe I'll be lighter still. I have told myself that even if the weight doesn't come off, just the lessening of symptoms is enough of a reason to stay on this regimen, but there's no telling how long it will take for Lyme to outsmart it or if I will mentally crash at some point and say "Screw it." But saying that is like saying I'm going to roll over and die of this disease. And that's just fucking crazy. In fact, I can't even talk about it anymore.


Today is so far an ordinary day (except for the fact that I actually posted on this blog). I forgot to mention that I had gone back to work some time ago, left because my symptoms became unbearable, and then got a job working at home, which I also left because I couldn't keep up. In the middle of that I realized I wanted to be a writer again, which has never exactly escaped me but my last YA novel being the car wreck that it was had discouraged me to the point of inaction. It suddenly occurred to me I was spending ten hours a day working for someone else and was willing to sacrifice my brain, so if I could just spend that kind of time working for myself I might have something. I dug through some old files and found one of the ten children's books I've written in my spare time and had an epiphany (Why couldn't I try to sell THESE?? But...but I'm a YA fiction author, not a children's book author! Scoff. Yeah, I know, I'm an idiot). I have sent out a query letter for one already and if I am going to hear anything, it will be in the next six weeks. Money is definitely a problem for us right now, and there's no easy answer to that one. But for now, for today, everything is okay. And that's how you have to take things when you have this disease...one day, sometimes one moment, at a time. And write as much down as you can, so you don't forget what happens along the way.


The Patterns of Lyme

I can't believe it has been so long since I last posted. However, that tells a tale in itself - I have not been well. On Twitter I often update about what "pattern" I am experiencing so I thought it would be a good idea to explain it. I'm not sure if it happens to others with Lyme but being aware of these ebbs and flows and familiar clusters of symptoms gives me piece of mind when that mind is sounding the "you've never felt this sick before!" alarm. It gives me a bullet for my anxiety to look back on what I've written and answer, "Yes, I have, last Thursday I thought I was dying too." They may last a few hours or even days, they may cycle in and out and overlap each other several times in 24 hours, or I might have a wonderful mosaic of a few at the same time. However they choose to manifest themselves, placing them in a category I can identify and predict will go a long way to management of symptoms I may suffer for the rest of my life. So without further ado these are the patterns I have noticed my body goes through. If you have Lyme too you may be able to relate. If you don't, what you're about to read may be horrifying. If you're not sure, you may recognize something that will motivate you to find the help you desperately need.

First, and most commonly, there is the Fatigue Pattern. This pattern causes me to sleep all night and wake up feeling like I never slept at all. It is sneaky and can creep up when I least expect it, and is often very hard to resist. Rather than feeling as if I'm falling asleep, I may have the sensation of being dragged kicking and screaming. Fatigue Pattern's favorite thing is to make me feel lazy over what I can't do and...I yawn ALOT. Sometimes I have yawning FITS. While fatigue itself is almost always there, the Fatigue Pattern is like a living breathing creature from the bowels of hell. When this thing is going on, there's not a damn thing gonna get done in my house.

Contrary to Fatigue Pattern, Insomnia Pattern doesn't care if I'm tired. I can be up all night, completely exhausted, begging and praying for sleep, and Insomnia Pattern just laughs in my face. Sometimes it switches things up and creeps into the daytime as well, or pounces on me after I've slept a little and have gotten out of bed in the middle of the night to go to the bathroom or get a drink. I suspect there are times it even shakes me awake, the little devil, just for kicks. Insomnia Pattern is often peppered with episodes of anxiety, mood swings, and tachycardia.

Up next is the Herx Pattern (named for the "Herxheimer" reaction), which for me has come on like both a lion and a lamb, aggressive or gradual, but always a surprise, nonetheless. Surprising because for me it is an exacerbation of my "typical" Lyme symptoms, along with enervating episodes of Parkinsons-like tremors, extreme brain fog, emotional instability, and just generally feeling like my entire body is about to implode. I rarely run a fever but some have reported a spike in that area, although I do feel as though my temperature is up; glossy eyes, flushed face, chills followed by hot flashes. But lets not get ahead of ourselves. Because these symptoms also cross over into something else, something horrible, and my least favorite pattern of all.

That's right, I'm referring to the Flu Pattern, and this one is like an onslaught of Lyme symptoms and the worst seasonal illness I've ever had. Strangely enough the Flu Pattern doesn't last long, but its vengeance is solid and true. I have noticed in my records it assaults me approximately every two weeks, and each time I am convinced that I am expiring anew. The normal progression of flu over the course of a couple of weeks tends to be that feeling of "coming down" with something, a tickle in the throat to fever, body aches and chills, but the Flu Pattern's hell rushes on within hours. It leaves no time to recover or comprehend, no time to mentally prepare. A typical flu sufferer's symptoms build to a gradual peak, then plateau, then die off, all in a luxurious length of time. Flu Pattern is like a truck hitting, a literal frenzy of illness that strikes and then drops off much like its typical counterpart, leaving that post-feverish, warmed over, finally-just-enough-strength-to-shower feeling. All that and my temperature never gets over 95 degrees.

Last but not least, there is the Well Pattern, and this one can be short and sweet as well. But its consequences can be devastating because of its deceiving, evasive nature. One morning I woke up thinking, No pain, no symptoms, what a beautiful day. It led me to believe that it was possible I could be cured. It made me wonder what I had been bitching about and why life for me had become such a struggle. It slapped me in the face and said "Get over yourself! You're fine!" It made me go back to work and allowed me to get things done around the house. But in the end, it too left me out in the cold. Yet of all the patterns, I have to say I cannot hate this one equally. Maybe it isn't a pattern at all. Maybe it's a glimpse that I can have my life back one day, or, at the very least, a little blessing I should be taking full advantage of when it graces me.

So how about those patterns, huh? Are there any that I missed? I'd like to hear some comments on these, and how everyone else copes with them. And I'd like to know I'm not just overthinking, or in my hope to get control of these, thinking wishfully either.


The Good Doctor

I consider myself a good judge of character when it comes to doctors, seeing as how I've been to so many of them. Neurologists, cardiologists, psychiatrists, family practitioners, gastroenterologists, allergists: I've seen 'em all. Each time I go I have to brace myself for one of three responses.

There's the arrogant guffaw, head shake, and good ol' boy slap on the back while hearing, "Three kids would make anyone tired!"

There's the confused murmur, head shake, and pat on the back while hearing, "You do seem to have the symptoms of (insert name of idiotic new development), but your tests all came back normal."

Then there's the distracted dismissal, head shake, and scribble scribble scribble on their prescription pad, and, "Trythisseeifithelpsgoodluck." Then out the door. Love that one.

There have been a few shining gems in the bunch, however, like my family practitioner who always brings in a medical student because I have such a huge collection of symptoms, my cardiologist who actually listens, then vows to do every test she can think of (she actually found the Lyme), and a nurse at her office who stopped her pre-exam while I rattled off my symptoms yet again to place her hand over mine and say, "Don't give up. They may not know what it is now, but they'll figure it out." Moments with these people who actually cared almost make up for the horrors of my past medical life, and it is those moments that kept me vigilant when I had all but accepted that I must be crazy. At my first post-Lyme diagnosis appointment with my family doctor he went over every symptom I'd ever come to him with for the past seven years and it was like a 21 gun salute of validation. I went to the car and cried (I hadn't remembered telling him all that stuff, damned memory loss) and realized I have lost so much to being ill. I'd been in denial that everything I'd experienced could be attributed to the Lyme, but it had been laid out in front of me and I could no longer look away. I vowed not to lose another minute to a doctor who didn't care, didn't know, or didn't have the time to put me on the path I needed to take to get well again.

I recognize that I am lucky in so many ways when it comes to this disease. I tested positive on both the ELISA and Western Blot tests, which many Lyme patients do not do. I found a Lyme doctor near my house that was inexpensive in comparison with others elsewhere, and he was able to see me right away. I can still walk, talk, and get things done (on most days) and have fewer complications than some. And I know what I need to do to overcome this, or at least to keep trying.

On the 26th I walked into my new doctor's office, the beginning of an appointment that was to last about two hours. I told him all of my symptoms (at least the ones I could remember), asked questions, got a list of tests he wanted done, and introduced him to my whole family. He used to be a general practitioner at a busy walk-in clinic, but opened his own practice mostly dedicated to the treatment of Lyme. He is one of only a few doctors in the state of Kansas still treating this illness. He has certifications, accreditations, and a great background. Many of his family members have had Lyme, and with proper treatment became well again. After so many doctors, so many tests, and so much uncertainty, I can only describe it as bittersweet to walk into an appointment and feel those in the room know you already. So there was only relief when he said, "Look at this list of symptoms and you'll see you have all of the typical signs. We can start a treatment that won't cost too much, will make a big improvement in your condition and shouldn't take long to get going, if you agree you want to do this."

Was there any other option than to say yes?


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.