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

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.

Enough of That

There are storms rolling in from Oklahoma today. There are ants crawling on the table. The lawn needs to be mowed, the laundry done. No matter how sick I am, life goes on around me anyway, because life doesn't care. It is the world continuing to turn, kids refusing to stop growing, hours on a course that in some way, in some form, will continue on forever, with or without me. I can choose to bemoan it, ignore it, or deny it, but no matter what I do life still passes me by. Some days I sleep through it. Other days I try to press my legs and arms against its walls and stop it, like on the three story slide at the haunted house that nearly ripped my ankle in two. There are times I wish there was more, that I could do more with what I've been given, and know that surely on Judgement Day when our statistics are read I will have spent 96.8% of my life sleeping. My mind says there is no reason I shouldn't be able to go to work, to clean the kitchen, to weed the garden, but the moment I try it my body rejects such things. There is hell to pay if I do not heed that rejection; first the pain, then the stiffness, then the tiredness, all of which can have pepperings of nausea, lightheadedness, dizziness, and other random idiocy throughout the day. At least once I will feel this is it, this is the end. Or at least this is where I'm going to faint. Half of my illness seems to be the fear of getting sick in front of other people, the other half the fear of getting sick and being alone. How do you be friendly to others, how do you have a social life, even an outdoor life, when at any moment a stabbing pain could shoot through your body, or you could lose control of any function, or even collapse? How do you go about your daily business when there are things like the temperature, sunlight, blood glucose/blood pressure, where's-the-nearest-bathroom, and-do-these-people-have-a-defibrillator, to worry about? Why does everything feel like such an ordeal, whether it be simply mailing a letter or showing up somewhere you were invited? Today is one of those days I want to say fuck it, who cares, I'm too tired anyway, the world can go to hell.

But the world doesn't give a crap what I say. The world says there are three kids who are getting out of school early and it's going to be storming when I go pick them up. It tells me if anyone ever comes to my house and sees what a hell-hole it's become they'll report it and the county will have it condemned. It reminds me that even though I feel I could lay down and die I'd get no sympathy and that even those who cared the most about it would have to go on. It's required. Time doesn't stop. We have no choice about that.

The only thing we can choose is how loudly we bitch along the way.

So Much To Say

I have been away for so long without posting that I'm not sure I can cover everything that's happened in a timely matter. But since I've got time, I guess I'm going to try.

I went to my support group meeting and it was unbelievable for many reasons. I was one of the youngest people there, but suddenly as we began introducing ourselves around the room I realized I was surrounded by others who were talking about MY symptoms, what I have had to go through all these years. But that's the point of a support group, right? So you don't feel like you're the only motherfucker out there with this problem?

The horror of Lyme Disease is that the more people that turn a deaf ear to MY problem, the more people will become infected and ravaged by this terrible illness. In the 80's, the AIDS epidemic began pushing its way to the forefront until it could no longer be ignored. Lyme Disease is like that, and in the midst of denial and rejection and political warfare this sickness is going to keep spreading. We'll pass it to our family members and children through blood to blood contact, we'll be ridiculed by doctors who aren't familiar with its travesties, we'll be bullied by our insurance companies and denied treatment. What will it take to break this cycle? And what was so strange about sitting in that chair listening to everyone else's stories was that if someone had acknowledged what was happening to us in the beginning, it could have all been avoided. Over and over again I hear this: "I had the tick, the rash, and the symptoms, even tested positive, and my doctor said it wasn't Lyme Disease." Or: "I've been diagnosed with (enter 10 generic catchall diseases of your choice here) and finally found out it was Lyme." Or: "One minute I was fine, the next I couldn't (insert normal everyday bodily function here)." And the saddest fact is that Lyme Disease, caught early, can be easily treated. Yet the denial goes on and on.

My own doctor seems to have resigned to the fact that I'm a difficult patient and can't be helped. My meds were stopped because of the hives, and for a week I floundered between ill and okay, then promptly developed an icky secondary infection thanks to the antibiotics. With that overwith, I did gain a small victory with convincing the good doc to test me for co-infections (caused by other germs ticks carry) and will hear the results of those in a few days. Either way I will probably end up at KU Hospital and those catchall generic diseases will be on my roster as well.

My midline catheter was removed today, and quite easily, I'm afraid to say. In spite of the ordeal it took to insert it, the nurse simply sat me down, unhooked the tube, and slid the line out of my vein in all of two seconds time. The only sign it was there is the massive tape burn and probably a permanent tiny hole in my arm, but I can't get my hopes up yet. The catheter will surely go back in before too much time has gone by.

Today my daughter and I went around town doing various errands and I was surprised that a full four hours passed and I was able to keep going even through long walks and carrying things. Everyday I suffer the short-term memory fart of thinking my symptoms are new and frightening, when really it's the same shit I've been dealing with all along. It comes on like a slow storm, and I can feel it moving closer and closer. Some days it's even like I wake up in wet cement, and as the hours progress that cement hardens, stiffening my joints and muscles till I can no longer move or function properly. Some days, like today, it's like a wave, starting with the slightest hint of pain in my legs, engulfing me in flu-like feverishness and fatigue, then rolling over me and leaving me washed up and beached. Then there are the days it's like a hurricane, hitting before I can even evacuate my bed in the morning, knocking me over and sending my life crashing like debris all over the place. There are the hours when I twitch incessantly, when the noise from my surroundings and the sight of it and the smells are just too loud. Two hours later I'm the perfect picture of health, doing the dishes and making lunch. By evening I can't remember what I did all day, or where the bathroom is. And facing anything is like looking up a tall, slick hill I'll never be able to climb.

I've gone through phases after learning of my diagnosis, phases that have surprised me, phases that have been predictable, that have allowed me to accept what inevitably must be true. It is not unlike other tragedies and what they bring in their wake. At first I was in denial, that I had this, that it had done this to me, that this could be the answer I'd been looking for all this time. Then I had to cling to it, to really milk it for everything I could and acknowledge that this was the thing to blame for everything. Now I must move past it, and realize that it's no different knowing its name. I have struggled with this for so long, that's it's really just a part of everyday life for me. What that means I will always be finding out.

A Fork In the Road

The realization of the trouble I was going to have getting proper treatment for this disease has come on slowly and painfully to say the least. For the last few days I have been horribly ill, and there doesn't seem to be an answer for any of it. But where would I even look to find that answer? The doctors have no idea. Nobody knows. I have never had more of a fight ahead of me and less energy to fight with before in my life.

A couple of days ago I came down with what I thought was a stomach virus, as my children were vomiting and feverish and generally ill. My nurse told me to skip my infusion for a day and pick it up again the next, and I felt better when I woke up that morning, better than I had in days. After hooking up my IV I noticed a couple of red raised bumps on my arm, so I watched them and finished up, noting no change. Everything was great for the rest of the day...surprisingly I had a complete absence of pain and fatigue, the realization of which was a testament to how constant those symptoms have been for me. I even went out of the house at about 10 PM to return some DVDs and pick up some cereal for the kids for breakfast the next morning. I couldn't believe it; I was amazed with myself the whole way there.

Things rapidly declined as I entered the grocery store, however. I started to feel light-headed, then remembered I hadn't eaten dinner, as my appetite has been scarce lately. (Still gaining weight like a champ, though, of course.) I decided, especially after the onset of a mini panic attack, that I'd grab a Snickers on the way out and promised myself I'd eat a decent meal as soon as I arrived home. Back at my house I started itching and noticed my arms and legs breaking out in huge, red, swollen welts, and I frantically dialed the doctor's number. The answering service snippily told me if this wasn't a medical emergency, to call back tomorrow morning, so I went to the emergency room. I was now in full panic attack mode, shivering, shaking, with my blood pressure pulsing at 144/92.

I tried to distract myself by watching TV once in the room, and while I waited for the nurses to treat me, thinking angry thoughts about anaphylactic shock that would go unnoticed, I continued to itch and tremble. I should have savored that time before they came in, because when they did, they injected Benadryl and Atarax directly into my IV. I have never felt so awful as I did in the 20 minutes that shit was cycling through my body in its initial waves. As soon as it hit me I quite literally went blind, seeing only white at first, then darkness. I heard myself say "I'm going to pass out" and heard the rails go up on the bed. I was so scared I was sure I was going to die right there of pure fright. My voice was the only thing that was working, and I could barely even hear it over the roaring noise in my head. I tried to lift my arms to fight something, anything, off, but they wouldn't move, and my legs had turned to lead as well. I was told to lie back and breathe, and I just kept thinking that things had never been this bad for me before. Not in three childbirths, hundreds of blood draws, several hospital stays, flus, mono, none of it was as awful as what had just been done to me. If I'd felt like fainting before, this spit in the face of light-headedness and starry vision. This was like something reaching up my nose and turning my brain inside out to induce unconsciousness, and I am trembling now as I type these words just remembering it. It seemed to be the mother of all blackouts but I was probably not completely under; I could still hear my own voice and was trying to control my breathing and just make everything stop, just stop. I had this fear that if I let go I'd wake up with my arms and legs amputated and a tube down my throat. I'm telling you, when I get like this, the imagination knows no bounds.

My eyes were blurry and burning but later only the heavy leadenness and tiredness remained. The emergency room nurse insisted I could not drive home alone, which I tended to agree with right then, and called me a cab (my husband was at home with all three kids, who were sleeping as it was about three in the morning, and who were still ill with the flu). I made it home and the next day still had that heavy feeling, but after visiting with my doctor was told to hold off on any more treatments until he decided what to do. Today I go back to find out if there is an alternative to what I've been going through, and there is so much I don't even know yet to be able to ask him. Surf any online Lyme Disease forum and there is so much information about disease stages and different antibiotics and treatments for co-infections and you just want to hang your head and say "done." So I have a decision to make; let someone else forge the road for me or leave no stone unturned, no question unasked and possibly further delay my treatment in favor of something that actually might work. The thousands of dollars others have spent to find the truth are not dollars I have at my fingertips to spend. The time it would take to sort through all that I may have going on inside is not time my brain can expend. Every day that passes I realize I have been in denial for far too long about what this disease has done to me and what the result will ultimately be if something isn't done. But can I fight for this? Do I have the strength? I can't imagine where it's going to come from. I am so tired, so worn out, that I sometimes wish I'd never even gotten the tests done, never even been diagnosed. Ignorance/bliss, blah blah blah, right?

So today I stand at a crossroads and I have to decide which way I'm going to turn. My doctor's appointment is this afternoon and what I say and ask and do there could make or break my recovery from this disease. I'm scared, I'm confused, and most of all, completely exhausted. What the hell am I going to do?

All About the IV

I wanted to write about my experience with getting the IV port put in my arm, and what has gone along with it. I've had it for starting on three weeks now, and it has been emotional. Ever hated something that was supposed to be good for you? Peas? Wearing a bra? Your husband? That pretty much sums up my feelings about this catheter, and it was definitely a huge piece of the reservation cake I was baking when it came to being treated for Lyme Disease.

I went to the Treatment and Procedures Department of the hospital to have it put in. I was alone; I thought it would be no big deal, it would only take a few minutes, and I could handle it on my own. The preparation began: warm blankets, an open-back gown, searching the TV for something effectively distracting (if I don't see the needle, I'm fine). I was getting a Peripherally Inserted Central Catheter, or PICC, meaning a tiny line would be threaded through a vein in my arm that loops above my heart. It would then have a port where I could get blood drawn or hook up my own IV so I could do my treatments myself at home. The ease of care was lost on me; it began to sound alarmingly invasive. I mulled it over as the nurses gathered their tools beyond the curtain.

A nurse came in and read to me from an informational pamphlet, and when she was done I realized I had just been pitched. Looking down at the pamphlet the complications seemed to be in huge type, and in absolutely enormous letters was a sentence that read something about a DNR order being waived for this procedure only. Sign here, saying you agree.

Is that what I should be worried about? I wondered. Nothing could dwarf the ignoring my right to not be resuscitated like doing something that would require me to be resuscitated in the first place! Shit, what had I gotten myself into? And with no one here with me to tell me how irrational I was for being scared of it!

What if a tiny poke was all the motivation my continuously palpitating heart needed to flop over and die? What if the nurse (not only a longtime technician but a one-time patient as well) accidentally pierced my vein and I bled to death in 7 seconds? What if one of those complications so enormously printed in the pamphlet happened and I was too ignorant to recognize it before it was too late? After grilling the nurse tearfully about other options, I nodded vigorously when offered a midline instead. I didn't know what the hell a midline was, but at least I didn't need to sign a paper about DNRs and the possibility of blood clots.

The nurses went about creating a sterile room. This was serious business. They draped me with sterile cloths, dressed in robes and masks. I tried to watch TV. My arm was washed with soap and water and swabbed with cold alcohol. An ultrasound was done and my arm marked for ease in differentiating vein from artery, and I felt a little poke as the numbing solution was administered, ironically enough. A big pinch as the catheter punctured the outer wall of the vein and then a few minutes of feeling nothing but a little pressure just above my elbow and they were done. They bandaged me, reassured me, and let me lay still for a bit so I could settle down and get my head together. Then I was off to the doctor's office to get my first IV treatment and a little bit of training on how to do it myself. I drove over there with no problems, just the normal tiny amount of discomfort that comes from having a foreign object sticking out of your skin.

While learning to infuse myself I found out a midline was the exact same thing as the PICC, only the line is about two inches shorter. It figures.

(*The picture above is owned by http://www.drugs.com/cg/peripherally-inserted-central-catheters-and-midline-catheters.html)

The first week was the worst; the discomfort in my arm was constant, and if I didn't turn just right it would pinch or pull and I had difficulty moving because of that. The first time I rolled over on it in my sleep and woke up with tingling fingers I panicked. I have to shower with a huge plastic glove that goes all the way to my shoulder roped off by a tight rubber band. (I could make it easier on myself and use Saranwrap, but I'm stubborn.) When I had the bandage changed the nurse's alcohol swab burned as if I'd stuck my arm in a fire. The hole in my arm oozed and my arm swelled. My fingers began to swell on my first treatment, and because I'm taking a penicillin derivative and am allergic to penicillin, I was apprehensive, to say the least, also unnecessarily. I was hyper vigilant and a pest to the nurses and learned to deal with all of it. But the truth is, it isn't worse than living with the symptoms of Lyme Disease. If this is all I have to suffer with to get rid of that, I think I'll take that any day.

Week two had me calling the nurse because I had some reddish-purple marks on my skin near the entry-point in my arm; apparently I had been moving around a little much and caused some slight bruising. The second bandage change was great...the damn thing itched so bad that the alcohol was like a giant scratching brush...it was just AAAAHHHHHH. My arm was still swollen but now the nurse put what I think she called a bio-patch on the wound to help with the oozing; now I didn't have to look at the hole anymore and everything seemed cleaner. At the beginning of week three now the bandage still itches something awful...but the pain and discomfort seems to have lessened considerably. I pull it around, the kids climb on me and bump it and for the most part, it's become like an extension of my body.

It is really easy to use, just as they told me it would be. I simply thaw my medicine for about an hour, clean the head of the tube with an alcohol pad (it has a valve to keep air from getting inside), flush with a syringe of saline, hook in the medicine, and sit still for about 30 minutes, watching TV, or I can even type. Then I unhook, flush with saline again, wrap it around my arm, and put it away under the little mesh-like sleeve that hides it. I'll post pictures at a later date, which may be helpful. With Lyme it is imperative that what you have to do be simple and easy to remember, and even on my worst days I barely have trouble with it at all.

It is also definitely itchy, annoying, and cumbersome, but not unbearable. Just as it becomes completely forgettable it will be time to take it out...and God help me that day, and the nurses who have to deal with me.

In the Beginning

I have to think back to when I first got sick, really sick. My doctors have been telling me this is early stage disease but my symptoms conflict with that theory very much. About nine years ago I came down with what I thought was the flu. My roommate and I lived in her townhouse where there were lots of cats and a dog, and I even had my own cat...I'm sure there was a tick in there somewhere, but that in particular I only vaguely remember. After that first bout of illness where I was throwing up and my glands were very swollen, I was fine for a few more weeks, then suddenly the sickness was back with a vengeance. This time the lymph nodes in my legs were so swollen and painful I couldn't walk. My mom told me to get my gallbladder checked. Two different idiotic doctors I visited said I'd be fine in three days and to go home and get some rest. I was 20 years old and had never been really ill before. I stayed in bed, tried to get over it, and in a week or so I was better...until a few weeks later, like clockwork, it returned. This went on for a few months, without being treated (no one thought I had anything more than the flu) and I finally attributed it to my monthly cycle as it seemed to come and go predictably enough to set a clock by. A few months later I found out I was pregnant with my first child...opening up a door to years of being misdiagnosed and ignored because I was a "tired mom".

The MVPS could easily become a "chicken or egg" argument, but it's probably very simple. My family has a history of autonomic disorder, which usually presents itself in a predisposed individual after trauma or infection. Lyme Disease could have been all that autonomic dysfunction was waiting for to allow it to rear its ugly head. A couple of years after my mysterious cyclical illness, and pregnant with my second child, I realized that I was incurably, abnormally tired. Of course this was written off as normal for a woman carrying another child not even 18 months after giving birth to the first one. But that day, I can see it so clearly in my mind, the day I realized something just wasn't right anymore, I sat outside my house in the gravel in frustration because I just couldn't find the strength to get up and go back inside. I was more tired and weak than I had ever been in my life, and I knew it wasn't just because I was pregnant.

Fast forward to child number three, two years later. I was hanging ornaments on the Christmas tree, only a few weeks into expecting my son, when my heart suddenly and inexplicably felt like a dying fish flopping in my chest. This frightening symptom would repeat throughout my pregnancy, blamed on the increased blood volume a woman has during gestation. When it didn't go away after the birth, I was found to have the valve prolapse.

But it wasn't enough explanation. I also began suffering strange neurological symptoms I found hard to completely explain away with MVPS. I all but stopped watching television because any time there were color or scene changes on the screen it provoked an odd twitch inside my brain, and my memory became faulty. I had problems with word retrieval which was very frustrating for a writer, and I would go into a room several times a day and forget why I was there, or how I'd gotten there. I'd drive to a building only to realize I should have been somewhere else. People would come up to me to say hello and I couldn't remember where I knew them from or who they were. At work at a call center, I had trouble explaining things I knew inside and out to customers on the phone and frighteningly, I began to stutter. I've never had a problem with my speech in my life, and now I couldn't even do my job.

Then there was the pain. It was just there, everywhere, all the time. I have good days and bad, and am learning to accept if I can't make it up the stairs right now the laundry is just going to have to wait until I can. But how do you give yourself permission for that when you're trying to run a household? You don't. You just feel like the laziest person in the world. But that doesn't mean you can force your body to do something it just won't do.

When I went to my cardiologist I never expected the test for Lyme Disease to come back positive - after all I'd already been tested once and was negative. In early stage disease Zithromax is an option, but I'd been on Z-packs several times over the year because of my children bringing home various illnesses from daycare. I'd even had a bout of pneumonia which I was on even stronger antibiotics to clear. I was in denial for several weeks after the diagnosis, thinking this couldn't be the culprit of all the symptoms I was suffering. But the more I learned the more I realized how horrible, how destructive, the bacteria from Lyme Disease can be. I was devastated to find I may have passed this on to my children or my husband. And more infuriated to learn that my doctors don't seem to want to acknowledge how long this has been taking its toll on my life. The truth is some days I think I don't have the energy to fight for what I deserve - for everything to be normal again.

Three more days until the support group meeting...then they get to hear all this too. You should be glad you can just click the X in the corner to shut me up.

Life With Lyme Symptoms

Today was pretty much a typical day for me since I started my treatment (a 28-day IV infusion of Ceftriaxone). I've been told because I have had an exacerbation of my symptoms that I may be having what is called a Herxheimer reaction, which is when the dying bacteria release toxins, making my symptoms much more pronounced than they typically are. In any given day I will have times of functionality and then there are times when, quite frankly, I can't do shit. I have a to-do list that is constantly being pushed to a different day, or crammed with things when I'm feeling well because I don't know when I'll have another chance to get it done.

This morning I woke up tired though I slept the entire night, and my brain was so foggy I couldn't think straight for most of the day. Imagine you've injected yourself with a horse tranquilizer and there are bombs falling outside that will destroy your entire house if you don't get up and get out, and you might have an inkling of what it feels like. After barely eating breakfast (my appetite hasn't been too good the last couple of days) I had a bout of hypoglycemia around noon and only ate enough and drank enough juice to keep myself alive. I tried to make a grocery list, tried to clean, but it was as if I was attempting to think and move through sludge at the bottom of a pond, as if my brain was irritated. Somewhere in there I fell asleep for a couple of hours and when I woke, the fogginess hadn't cleared. Most times it's made worse by a mid-day nap, I am not sure why. Went grocery shopping with my husband and three kids but barely made it through, feeling nauseous and not being able to walk for any length of time. Wal-mart in particular has become the bane of my existence lately, because it is so big the thought of marching across the store to pick up some milk is just unfathomable. Got home and took care of my IV infusion, which has left me more nauseous, dizzy, and with a hell of a headache. Nothing on that to do list is going to get done tonight, that's for sure. I don't even know if I'm going to be able to stand up for ten minutes in the shower.

I'm going to a Lyme Disease support group meeting on Thursday in Kansas City. Hopefully they'll tell me something I can stake hope in, or if nothing else, at least make me feel less alone in this whole thing.

From Terminally Un-ill to Ill-Prepared

I used to write about having Mitral Valve Prolapse Syndrome (MVPS) and Dysautonomia. True, my autonomic nervous system failure is very real, so when I finally dragged myself in for this year's check-up with the cardiologist she assured me she was going to try some different avenues this time, especially since I have every risk factor for heart disease but the smoking and family history. I was mainly concerned about what my several-times-a-day episodes of hypoglycemia were doing to my heart, and seemed to be going in the direction of having more POTS symptoms, a related disease I have yet to be diagnosed with. I did a tilt table test, which came back negative, but some routine labs she ran showed something very interesting: a Lyme Disease infection. She prescribed a Z-pack (at which I scoffed, having taken Zithromax at least 10 times over the past year thanks to kids in daycare) and referred me to an Infectious Disease doctor. In the days that followed, the more I educated myself about this disease the more I denied, surrendered, suffered, and endured until I realized this was going to be no ordinary struggle. Facing an uncertain future, I want to know that there are people out there like me.