Wednesday, October 16, 2013
I've had a lot of down time over the past eight weeks. It's been a period of intense treatment, but also a time for serious reflection that required solitude, something I've never appreciated until recently.
I had my PICC line placed in September and infused for a month until my insurance cut me off. It was a bad line from the start, with many clot scares and late night trips to the ER. In the end, I saw a little improvement, but I'm not quite in remission again, and since antibiotics are proving time and again to be ineffective for me long term, I'm exploring other natural options.
This month marks my fifth year of treatment. During this time, I've learned a great deal about Lyme Disease, from a medical/scientific perspective, as well as emotionally/spiritually. I could write pages about the ups and downs, symptoms, herxes, and backslide frustration. In the beginning, I probably would have. But if I'd dwelled on these negative experiences for five years, I don't think I would have made it this long, and I'm not concerned with specifics now.
Because, let's face it: This. Is. Hell. During the low points of these last few months, I found myself in strange new territory. In the beginning, IV treatment and a cabinet full of pills meant hope. Attack and kill the bugs. Get better. It would be difficult and painful, but it would be worth it. As the years go by, hope dwindles. The drugs, special diets, supplements, stupid salt baths and mystical concoctions are a band-aid, and ultimately, there is no cure yet.
There is no cure.
One night, in a tailspin after a trip to the ER, I repeated it to myself in the bathroom mirror. For some reason, after about the tenth time, it finally registered. What did that mean for my future and quality of life? Not gonna lie, I literally wanted to die. Then I bargained: "No. I will be PERFECT. I will never eat a bite of sugar, I will sleep nine hours each night, I'll take every supplement and never miss a dose--I'm just not trying hard enough. I'm doing it wrong." Then I got angry. I hated my situation, my doctors, family, friends, my own reflection in the mirror, people I don't even know, food, drugs, even the snot stain on the sleeve of my sweater. And in a moment of complete insanity, I desperately wanted everything I'd just hated, minus the snot sleeve. I regressed to a childlike state and imagined shrinking my 6 foot Amazon Woman frame so I'd be small enough to curl up in the arms of someone much bigger and stronger to feel protected and comforted. In the end, I curled up in bed with a death grip on my pillow, on the verge of hyperventilation, thinking, "The pain is way too much. I cannot physically handle this anymore. Please, please, please, someone take this away from me."
This is not the point where I tell you I had a wild spiritual experience, or that I gave my problems to God. That works for many people, I support and admire it greatly, but in this case, the resolution was quite anticlimactic. (This also isn't a total downer of a post--I'm getting to the good part soon.) I told myself to get it together and that I needed a solution because no one benefits from a pathetic heap on the bed. I then consulted The Oracle (AKA Google), very simply and somewhat stupidly: "How to be happy."
There's a lot of motivational material available, but the only thing I remember is an article about the seven characteristics of happy people. And out of those, only one stuck with me: Happy people express gratitude for what they have, and they do it ALL the time, every day. When it doesn't come naturally, they practice until it becomes a habit and doesn't seem foreign.
So I made a list. Despite the perpetual rain cloud that is illness, I was grateful for over twenty things, just moments after that ridiculously dark hour. I added more to my list each day. As I did that, I noticed I was cutting out the crap that didn't add any value to my life. For example, I was recently grateful for being able to walk around the loop in my neighborhood, as I was not able to do that a month ago. Instead of wasting time reading irritating status updates on Facebook, I used that time to get out and enjoy the foliage, because I was mindful of how much I appreciated it. If I wasn't feeling well enough to walk, I texted with someone I actually care to converse with and like getting to know. I am grateful for new friendships.
It's been a fine tool, and it's kept me sane while I try to relax and figure out what to do next. It's a step in the right direction at least, and it led me to what inspired this post:
Tonight as I was vacuuming up old goldfish from the snack graveyard under the couch, I asked myself, "What has illness given me?"
- A greater appreciation for things most people overlook: being active when I can be (the thrill of a leisurely walk is unbeatable), taking my kids places, even if it's just to the store, visiting friends, getting on an airplane (I did that a few times this year!),being able to sit outside for a while and enjoy my natural surroundings, etc.
- Knowing that my body might fail me, but I keep moving forward, therefore, I am more than my body
- Priorities. What's important to me? I don't have the energy for the typical overloaded American lifestyle, so when I do something, it's something that's worth my time and effort, and I value it
-It's allowed me to know myself, my body, and my limitations. I now have a healthy respect for all of these
- I can say no without guilt
-I am constantly reminded of how temporary everything is, and I don't take the people and things I love for granted
-I am learning to let go of fear and expectations
-I have a greater understanding of who really loves and supports me (who has stuck around) and learned to let go of relationships that lack substance
-I've made amazing connections with wonderful people, and some of them I have been able to help
Maybe someday I'll post a full list of how Lyme has been a gift. Not sure I'm ready to call it that yet, but I will say that it's been the greatest teacher I've ever had. That's something I can get behind, and it's what's transitioning me into acceptance. No, there isn't a cure. Yet. But we can maintain the health we have as best as we can. There will be periods of remission, during which we will celebrate, and there might be periods of painful days in bed with icky protocols. I'm starting to realize that this was the lot I was GIVEN. No amount of crying, questioning, hating, negotiating, or replaying old scenarios will change it. I believe with all my heart that we will never heal until we let go of the emotional resistance to this and all of the self torture that goes along with it. Our own thinking processes determine our wellness. Easier said than done, I know. I'm on year five. I can say that for every episode of melodramatic turmoil I put myself through, there is a greater sense of peace and understanding that follows. Completely worth it.
How about you? Anyone else grateful for something Lyme has given?
Thursday, August 22, 2013
Leave A Light On is far from original. There are song titles (not worth linking to) and self-help programs (I have no interest in researching) with the same name. I also learned from a friend this afternoon that it's a slogan for Motel 6, which is pretty classy, if I do say so myself.
In this instance, Leave A Light On originated from my parents. I grew up in a small, wooded town in Connecticut (which I have since returned to, for better or worse). There are three traffic lights, and until fairly recently, when they added a real grocery store and a Starbucks (HALLELUJAH!), there were a few basic mom and pop shops but much to be desired in the entertainment department. We made our own fun, which involved long days outside, making mud pies, catching fish, riding bikes and throwing rocks into the huge lake across the street. Everyone knew everyone, and there were tons of neighborhood kids to get into trouble with.
People knew that the Champion household was the one with the huge porch light in the front. Like, disproportionately huge compared to the rest of the homes/cabins in the neighborhood. It had a tall, thick, wooden post with a glass dome that looked like a cross between an alien space ship and the glass elevator from Willy Wonka and the Chocolate Factory. And while most people would turn on their lights at dusk, that sucker was lit up a half an hour before, when the sun was low but still shining.
It went on so cars could see at night when they drove down our street. It went on for my father's return from work, but also while he was away on business trips. It went on when we went out for the evening and was set to a timer during vacations so people THOUGHT we were home. For friends, relatives, animals. Okay, maybe not animals, but you never know with my parents. It shined all night, and sometimes it was forgotten in the morning, so it served as a tacky glowing space orb competing with the sun (sorry greenies--it was the eighties, and we didn't conserve energy back then).
I didn't appreciate the light until I went away to college. It was my first time living away from home. I had Lyme and was sick but wouldn't get a diagnosis until years later. Regardless, I was young and had a bit of a rebellious personality (my mother would tell you that's an understatement). I studied hard, but I partied just as much, if not more, and ignored my deteriorating health. On weekends I would come home to visit hungover, sleep deprived, and riddled with odd physical symptoms. The light was always on for me; a big, ugly beacon showing the way to comfort, a full fridge and soft blankets. Each time, my father would say, "Welcome home," as if I'd been gone for years. It was understood in our family that, no matter what, I would always have a place to come back to.
My first wedding was held in that neighborhood. The marriage was short and disastrous, but to this day, I hold the ceremony in my top five happiest experiences of all time. The party was over, and we were headed off to honeymoon in Paris and then make our big move to Miami (a dream come true for a small town girl). My parents wished us well. It was a joyous moment without any tears shed. As we pulled out of the driveway and honked the horn, my father flipped on that damn switch. I cried silently and bittersweetly at a friggin' porch lamp, of all things, and watched it fade in the mirror until we turned the corner.
Luckily, it was still on when I returned, a hot mess, to live there eight months later (hey ladies, sometimes that hero is really a zero). It was on a few years later when the big Lyme crash happened and I could no longer climb the stairs to my apartment. On when I went through three rounds of intense IV treatment. When my second husband and I found out we were having another (surprise!) child and couldn't afford our condo, my meds, AND two babies at once. It's on now that I am sick again, as a single mom (with a very supportive ex I proudly call my friend) and unable to work.
I realize that I'm blessed and that not everyone has a loving, compassionate family. I've encountered my fair share of assholes along the way, too; I just lucked out in the kin department.
But you DO have a "light" of some sort, and it's the key to healing, both physically and mentally. It's something that makes you feel safe and comfortable and is constant, even when you're not aware of it. Maybe it's your spouse or your kids. A great career, artistic expression, a support system, friends. Nature, a God, or something small and less obvious: a love of travel and new experiences, a memory of a good time in your life that gives you strength to fight for your health so that you can make more good memories (it's inevitable--as much as you struggle, there WILL be some good in between). Maybe helping others is your light? Or perhaps you're just naturally tough and persistent, and your own life goals keep you going.
If all else fails, you can be your own light. I used to roll my eyes at all of the "feel-good," love yourself, self-help jargon, but I'm finding now that it's true. At our cores, we ARE light. Whether you want to call it a soul, a rule of Quantum Physics involving cells, molecules, and atoms producing energy, consciousness, a basic, innate survival instinct, whatever... As humans, we have the unique gift of a SOMETHING that is a constant, forward moving, drive to survive, succeed, heal, love and be loved. It's there whether we're aware of it, and even when we're sick, in terrible pain, and hopeless. Let's face it, if we didn't have lights, most of us wouldn't have survived as long as we have with this illness. We can cultivate our lights, lean on them, and use them as a focal point to help us heal.
I wish you faith and reassurance on your healing journey.
I wish you a light to focus on when you need help or direction.
For what it's worth, my Alien Willy Wonka Orb from Mars is on for anyone who needs a boost.
Monday, August 19, 2013
In 2010, I started The Lyme Pregnancy Journal. I had recently miscarried twins due to Lyme complications, and I was fortunate enough to become pregnant again shortly after. The second time around, I was determined to "do it right," whatever that meant, and thus began my somewhat obsessive late-night internet searches for current information on Lyme Disease and pregnancy. I found a few outdated studies, some going back as far as the eighties. There was a general consensus from both IDSA and ILADS experts that Lyme can cause birth defects, miscarriage, and stillbirth. But that was it. At one point a "Lyme Pregnancy" image search offered a picture of a small turtle with two heads. Awesome. Thanks for that.
Long story short, I was irritated, nervous, and I felt like I was headed into some dangerous uncharted territory alone. So I said screw it. If no one's done it, I will. I'm not an expert or a doctor, but I have a Creative Writing degree that's been collecting dust for way too long, and I don't want any other woman to feel as scared or alone as I do now. And that's how the LPJ was born.
At first, I had three readers. Two of them were my very supportive mothers-in-law. The second was my own mom, who had no choice either way because I emailed her the links every time I posted. My goal was to eventually reach one stranger and make a difference.
Tonight I checked my LPJ analytics for the first time in over a year. Nearly 90,000 page views. Ninety thousand. Over the past three years, I have corresponded with hundreds of women who are sick, pregnant, want to get pregnant, having trouble getting pregnant, you name it. I've spoken to many on the phone when email didn't cut it, and I've cried along with them, because a.) I'm not a goddamn psychiatrist and I'm not wired that way professionally, and b.) I'm just a mom who has gone through many of the same situations, and I know how hard it is. I've made friends who have helped me during my own treatment; without them, I don't think I would have made it into remission. And my favorite: the pictures. There are no words to describe how I feel when someone I've never met sends me their newborn photos after a long struggle, with a note saying, "I did it! He/she is healthy and beautiful!" I keep them all in a folder, and I look at them on my darkest Lyme days when I feel alone in illness or I'm lacking purpose.
That brings me to the point of Leave A Light On, especially this post: I'm not sharing all of the above mentioned so you know how many page views my stupid blog received or that I'm a creeper who saves strangers' baby pics. What internet searches don't tell you is that there are so many women out there who are dealing with Lyme Disease, pain, fear, isolation, and depression, but there are also a whole lot of positive experiences when living the Lyme life, and we are not actually alone; We are a community of badass, tough-as-nails ladies. Many of us are in our thirties or early forties. We want to have families and enjoy them. We want healthy children. We want to be healthy ourselves. Currently, our internet searches pull up countless articles on the political war zone that is Lyme research and treatment. There are just as many personal blogs focusing on disabilities and daily pain mixed with a healthy dose of anger and resentment. This represents a part of Lyme life, but not all.
I was blessed to have a little over a year in remission. I functioned at a solid 85%, sometimes 90%, and was grateful for it every day. Why I'm no longer in remission is a story for another time. I've recently slipped very far and tomorrow my doctors will make arrangements for a picc line to go back in. I'm finding myself in a similar situation in terms of uncertainties and fear. I'm not pregnant anymore, but guess what? I'm sick as a dog and now I have a two-year-old and a three-year-old who don't slow down just because mom can't stand up for more than three minutes. What do I do?
I'm going to go with what has worked before: take it moment by moment, and share what I learn along the way. Maybe some of you will have advice on how to get through it. Maybe you'll just find comfort in knowing there are many of us struggling with parenting but getting through it all while we battle these nasty spirochetes. Either way, this is a continuation of the LPJ, minus the pregnancy part, and adjusted to the new chapter in my life, which is raising kids with a chronic illness. Thank you for joining me. I wish you all peace, strength, and good health.