Thursday, October 22, 2015

Lyme Life - update

I posted this last summer after I was diagnosed, but I've added a few thoughts and decided to repost it here:

I was diagnosed with chronic Lyme disease in May 2014, though my doctors and I suspect I've had it for a decade or more. I don't remember a tick bite, nor did I have a specific bulls-eye rash or flu-like symptoms. It wasn't until I suffered significant memory loss, several episodes of Bells' Palsy, and years of pain that I even considered getting tested.

I spent my childhood running around in the yard and the pasture behind our house. We went fishing and camping every summer. And I don't remember our dogs and cats ever wearing flea & tick collars. We were a rural family and we sure weren't going to let some pesky bugs dictate our lives. As a kid, I remember hearing about something called Lyme disease, but I had no idea what it was or the effects it had on its victims. Even as a parent to my own kids, Lyme wasn't something I ever concerned myself with. If anybody got a tick, it was plucked away with a cotton ball soaked in nail polish remover and we went on with our lives.

How foolish we were.

My diagnosis took me by surprise, but at the same time, with all the research I'd done while waiting for my test results, I think I would've been more surprised if it hadn't come back positive. I had almost every sign of late-stage Lyme. In fact, I remember hoping the test would come back positive. Not because I wanted to have it, of course - who the hell would want to be this sick? - but because it would finally give a name to all the shit I'd been dealing with the last several years. 

Like most people with multiple nondescript symptoms, I just wanted an explanation. I was so sick of giving excuses that seemed like bullshit even to myself and I was the one who knew what I was going through. I blamed my brain fog on the anesthesia from my hysterectomy in 2012. My pain was, of course, from sleeping wrong and not seeing my chiropractor as often as he'd suggested. The Bells' Palsy and skin rashes were an allergic reaction to something, I'd said. My deepening depression, growing anxiety and increasingly common mood swings had to be because of stress. Sleeplessness, exhaustion and weird sleep patterns could be blamed on my anxiety and depression. I mean, literally everything could be explained away by something else. But there was only one single thing that would encompass them all and it would finally have a name.

Until my diagnosis, I sucked it up and dealt with life as it came at me. After all, if it didn't have a name, how could I not just deal with shit? I had no excuse, no reason, no explanation. Hell, if I'd known I had Lyme disease three years ago, I could've saved myself thousands of dollars in therapy where I tried to figure out why I felt so fucked up all the time. I still tend to think I'm stronger than I am, more motivated than I feel, more capable than not, and as a result, I get pissed at myself because I end up overdoing things.

Upon diagnosis by my primary care doctor, I spent a month on doxycycline which made me extremely physically sick a few times. Then, when the doxy didn't work, I was sent to an infectious disease specialist who put in a PICC line for IV meds that totally hosed my 40th birthday month. I did feel better for a few weeks after those meds, but by fall, I was miserable again. At that point, my doctor didn't know what else to do. I succumbed to the disease and accepted that it would just be something I'd always have to deal with.

Fortunately, a friend of mine suggested contacting the website to find a Lyme-literate medical doctor. I had no idea what that meant, but as I explored the website (as well as a couple others), I discovered that there are two "schools of Lyme treatment." The first is what most doctors follow. It's set in place by the CDC and it does not involve anything called "chronic Lyme disease." It doesn't exist, according to them. The second school of Lyme is a precedent-setting group who is willing to risk career and reputation to treat what they know is real. LLMDs are regular doctors (general practitioners, OB/GYN, infectious disease, or internal medicine doctors, etc.) who also treat Lyme disease and all its co-infections. They often have to challenge medical labs, insurance companies and other doctors and specialists to do so. There have been times when these doctors have lost their licenses for treating patients like me. There have been lawsuits and medical board hearings more times than not, and the results rarely go favorably. To find a good LLMD is a rarity. In the entire state of Iowa, there are only three doctors (that I'm aware of). I'm very fortunate to have found mine.

Impatience is another very real circumstance. My Lyme doctor told me at my very first visit, "this is not going to go away overnight." I had no idea how right she was. The most frustrating part is feeling like I've made progress and then slipping backward. For every five steps I take, I might get to keep one of them. While not every single day is a battle, the majority of them are. Being in my forties, but feeling like I'm 80 is not fun. I've learned to measure my days by the degree of severity of the symptoms, not whether or not I am experiencing any. Every day, there's pain. Every day, there's brain fog. Every day, there's something I forget. Every day, there's neuropathy. Every day. Some days they're at a one, some days they're a nine. They're never a ten, though because I know there's always room for them to be worse. I've never rated my symptoms at a ten. I hope I never have to.

Mostly, I just miss who I used to be. I was fun-loving, carefree, spontaneous and happy. Now, I have to remind myself to be some of those things, and I am slowly coming to terms with the fact that I will probably never be some of them, too. Spontaneity is rarer for me because I have to stock-pile my energy. Happy is a choice, I'm learning, but I do try to find happy in every day - whether it be something grand or something minute. I still love having fun, but carefree is something I'll never be again.
That part sucks.

This will always be on my mind. Even if I get to the point of being symptom-free, it will always be in the back of my mind like a stranger lurking in a dark alley. My health was something I used to take for granted, but the bottom line is that I will always be sick. There's no cure for chronic lyme disease (only remission), no survival rates, no pink ribbon campaigns and universal sisterhoods like there are with cancer. Thousands of people have it, but nobody talks about it. That's hard. Most days I feel very alone in this. Those are the days when I stay in bed and lose myself in a book (or at least try to - my concentration has been a little sketchy) or Netflix binge. Other days, I pretend I don't hurt just so I can feel normal...even if it's bullshit.


Because I know what people think. Hell, if half the medical community doesn't recognize chronic lyme disease as a real thing, what hope do I have with friends and family who don't have the answers? People who don't know anything about Lyme don't understand that I hurt almost all the time. Or that going to the grocery store or making dinner for my family can put me in bed for a day and a half. Or that traveling can take me out for a week straight. They don't understand that extra stimulation such as a crying baby or a fight between family members makes me want to beat my head against a wall. They think me being asleep at 2 in the afternoon is laziness, or that being awake at 3am is insomnia. They don't understand how painful it is for me to sit at a ball game without moving for two hours. And that even just listening to them vent about work or their kids makes me want to cry because the burden is too great for me to carry. As time has gone on, more friends have learned about how this disease affects me, but making new friends isn't really happening; it takes too much effort to explain this all to them.

I feel like I should be spending my day apologizing to people around me because I'm sick. They have to hear me scream when I'm angry and cry when I get frustrated. They pick up the slack when I don't have the energy to both make dinner and clean up afterward. They work hard because I can't. Most days I feel like a complete burden. I'm working through that guilt, but it's not gone yet. Mostly, though, I just miss me.

I have hope that even if my physical abilities don't return to what they were that my mental capacities do. I'm smart. I'm funny. I'm ridiculously talented with words. But I'm also forgetful, crabby and tired a lot. I'm optimistic and I try and keep my hopes up, but at the same time, I have to be realistic because I don't want to set up false expectations for myself. Eighteen months into this and I'm still working on the balance there.

Most importantly, I try and remember that even those four steps may slip away, I am still gaining ground. Some days I feel okay. I'm motivated and energetic. I do my hair, throw on some make-up and venture out for a short while. It usually tires me out, but I refuse to let this disease dictate my life anymore. It's spent too much time doing that already. I just take things day by day, breath by breath.

 That's Lyme life.