So, I did a thing

...an awesome, incredible, great, horribly painful, terribly sad, emotionally-disastrous thing.

I addressed my demons.

I opened the closet door, dragged out my mental health skeletons and purposely shoved them into the spotlight. Had this been at the behest of a therapist, I'd have kicked and manipulated things so that door was never opened again. Honestly, I'd been getting along really well and felt that I was managing my mental health pretty well. My medication was working, I had very few crying fits that hadn't been brought on by an episode of This is Us, and overall, I felt good. So why dredge up the past and exhume the decaying corpse of depression, you ask? To save a life. Possibly, to save many. 

A couple months ago, I auditioned for a non-profit event called "This is My Brave." It's an organization that was created by a couple of women who felt that sharing their stories of mental illness could benefit others - that storytelling saves lives. I saw the post about auditions on Facebook and thought very carefully before doing anything, but my inner superhero had a pocketful of Kryptonite for my sense of self-preservation and I threw caution to the wind. Initially, I didn't even think of how I would be affected by what I had to share; I just thought, "maybe someone can relate to what I've been throughand they won't feel alone." 

Holy. Shit. Y'all.

People warn you not to practice channeling the evil on Ouija boards, don't open paint cans in an enclosed space, and don't drive drunk. But they don't warn you about digging up old ghosts of mental illness without a therapist on stand-by. It caught me off guard, knocked the wind out of me, and I have been flailing like a turtle on its back ever since. I thought I'd dealt with this stuff and tucked the remnants in convenient, little spaces in my brain. The organized apothecary of memories has since been obliterated. There are slivers of wood and shards of glass everywhere - which is kind of ironic considering I don't really even trust myself around sharp objects at this point. (Kidding. Sort of.)

I feel like the Red Cross should be here in a tent set up outside my house with the aftermath this thing has left. Don't get me wrong - I am incredibly proud to be part of the show and I hope that my story reaches someone -- many of someones, if possible. This experience has been nothing short of amazing and I expect the compilation of all our stories will be a powerful catalyst for those who suffer from mental illness. For that, I am so grateful and I am humbled to be a part of it. I'd do it again and again if it means touching just one more person. That being said, if I'm distant and quiet, or possibly quick-tempered and edgy - this is why. I am still trying to pick up the shreds. I'm searching for stronger bottles, thicker cabinet doors, and a less combustible space to store these emotions of mine.

I will be okay. Not today. Not tomorrow. Probably not even next week, but at some point, the dust will settle, the smoke will clear and the light will sparkle in my eyes again. Until then, don't walk around here barefoot; the Red Cross hasn't returned my call yet, so you're on your own for first aid.

*Author's note: I am not suicidal. I am not a danger to myself or others. I have felt very much like not being alive, but I don't want to kill myself. Please don't freak out and call the authorities for a welfare check.

My Lyme Road

For those close to me, you probably know the transition my health has taken over the last several years. But for those who are new to my life or those who may just be on the outskirts or might not understand how my Lyme disease has affected me, I want to summarize it. It also helps me to put things down on paper so I can see the progress I've made on days when it feels like all I do is move backward.

I want to state blatantly, though, this post isn't for sympathy or for someone to tell me how strong I am. I'm not. I'm a survivor. That doesn't make me strong. Please lend your understanding, but keep the sympathy for someone who deserves it.

Lyme disease is caused by spirochete bacteria (they look like little corkscrews) called borrelia bergdorferi. They are typically vomited into the body by a tick after it bites and feeds on your blood. Sometimes there's a rash and flu-like symptoms. In my case, there were not and I don't remember the bite. So, I could have had it from just a few months before testing positive, or I could've had it since I was a kid...or anywhere in between. Symptom wise, I believe I was infected somewhere between 2004 and 2007. For those who are immediately diagnosed, treatment is quick, usually simple and while the antibodies are always there, generally speaking, it's "cured" by most definitions. Testing is incredibly difficult because accurate testing has not been developed. It's a hit-or-miss kind of thing, so the fact that my tests came back positive is miraculous enough. Most Lyme patients don't get solid proof that they have it.

For those of us who are bitten and don't realize it, it turns from acute Lyme disease to chronic Lyme disease. It's also incredibly difficult to treat because the CDC does not recognize chronic Lyme disease as an actual disease. They (along with most medical doctors) believe that once a round or two of antibiotics is administered that the disease is cured. Any symptoms beyond that treatment is considered "post-treatment Lyme disease treatment" and "in rare occasions lasts more  than six months". Considering the hundreds of thousands of people with ongoing Lyme disease, this is not the case. It's not "rare" that it lasts longer than six months. Almost everyone who has been treated for Lyme disease beyond the immediate period following an infected tick bite goes on to suffer from months and years of ongoing symptoms, if not a lifetime of fighting relapses and risks of reinfection. It's important to know that while the CDC is one of the most knowledgeable sources on most diseases, for years they refused to recognize the sheer volume of patients diagnosed with Lyme disease. They hid the truth from the public, and they've hidden treatments, tests and other truths about the disease itself from those who suffer from it. I caution anyone with Lyme or if you think you may have Lyme to research as much as you can, but seek treatment from a Lyme Literate Medical Doctor. These doctors have been specially trained and certified for the diagnosis and treatment of Lyme disease and its co-infections.

Anyway, back to my truths...

Those corkscrew bacteria are Satan in a molecule. They are like teenage boys: they screw EVERYTHING. Cells, organs, blood, tissue, muscles, brain, eyes, ears....you name it and it's going to penetrate it. In the late-stage chronic lyme sufferers (like myself), when it penetrates the brain, it literally drills into the gray matter in your skull and permanently damages everything in its path, microscopically speaking. For me, it started in my thyroid and moved up my spine, through my cerebellum and into my temporal lobe. It has affected memory, hearing, speech, body temperature balance, ability to think of correct words and phrases, moods, and caused me increased sensitivity to noise, temperature and smell. I have muscle fatigue, pain in most of my joints, exhaustion in general as well as everything I mentioned above. Sometimes, I have good days. Most of the time, I'm average. But my bad days are bad. Those are when I stay in bed, limit my interaction and sleep - not just for recovery, but for the sake of saving relationships because my moods are volatile and I can't control them well. Anxiety attacks can come out of nowhere, last for hours and take days to recover from. So can bouts of rage and anger. These mood swings zap energy from me and it takes me a long time to get over them, much less the repercussions of the people who are in the path of my tornadic destruction.

It also affects my balance, my equilibrium, my organ function, my immune system, my breathing/cardio abilities, and my energy levels. You'll sometimes hear me refer to having -or not having- spoons. That's based on the Spoon Theory, which describes what many chronic illness sufferers deal with: http://www.butyoudontlooksick. com/articles/written-by- christine/the-spoon-theory/

Again...the symptoms aren't all the time...and not all symptoms at once (usually)...but my bad days can cover quite a few symptoms in varying degrees of strength.

As far as the timing of my diagnosis, I can only go off of what my symptoms were and when they developed. While depression and anxiety have been lifelong issues for me, the majority of the other symptoms began in the mid-2000s. My mother-in-law remembered me talking about being bitten by a tick in 2004 after we'd taken in some baby bunnies who'd been abandoned by their mother, and I remember picking numerous ticks off of them when we first brought them inside. I don't remember the bite, but my MIL did. By January 2008, I had dealt with several episodes of Bells Palsy (where it looks like somebody's had a stroke and half their face is sliding off their skull), which is usually a symptom of late stage Lyme. I had major health issues in 2012 when my reproductive organs began failing. I lost my right ovary in Feb 2012 to a dermoid teratoma tumor, then lost the uterus and cervix in May that year. Six months later, I went back under the knife a third time so the doctors could repair what didn't heal correctly. Menopause began shortly after that and I've dealt with numerous hormonal changes. This was also when the major mental and emotional issues began. They never seemed to get better. I blamed all the anesthesia, but as it turns out, most likely, it was Lyme related. I was finally diagnosed in 2014 at the urging of several friends, and it has pretty much consumed my life since then.

I have taken a plethora of antibiotics, both oral and intravenously. I have changed dietary habits, added numerous vitamins and supplements, hormone replacements, anxiety and depressive medications as well as hordes of natural and homeopathic regimens to help ward off the symptoms I deal with.

I have, during the course of my treatment, felt suicidal and hopeless more often than I care to admit. I also push people away who either aren't strong enough to deal with the ugliness of this disease or lack the strength of dealing with me while I fight this disease. I am incredibly difficult to love right now. I tend to keep to myself as often as possible.

Again, I don't want sympathy or pity. But I will happily take your acceptance. I'll take your attempt at understanding. I'll take your commitment to learn more about it. I'll take your proactive approach to preventing it in your own lives and the lives of your pets and children. I'm not strong. I'm not a hero. And I don't deserve your admiration for persevering through this hideous disease. But I will gladly help you learn more so you don't wind up like me.

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 ILADS.org 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.

Why?

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.

It's Time to Change

I've thought about suicide many times over the last thirty years. I'm a lifelong veteran of anxiety and depression, and I was recently diagnosed with mild bipolar disorder. All that aside, however, chronic Lyme disease, which has affected my brain on a molecular level, is what has caused me the most issues where my mental health is concerned. This disease has changed who I am as a person and I hate who I have become. I cannot fathom spending the rest of my life this way. So, yeah, I think about suicide.

Pretty morose thinking, huh? I agree. What's probably even more shocking is that I am the one writing it. Mel's thought of suicide? No way! Not me, right? I can find a joke in anything. Why would I want to kill myself? That's ridiculous! She's got a wonderful husband! She loves her kids! She has a great job! She's surrounded by such a great support system! 

But the truth is, I think about it a lot. I just don't admit to anyone. The consequences for admitting so would be too great, and let's not even discuss what would be said about me behind my back and the fodder that could be used against me as a mother.

Mental illness is whispered about like it's some sort of STD you pick up in a seedy motel. Along with that, come the people who think it's an excuse for behaving a certain way...or, the opposite, that people have to behave that certain way in order to be categorized as having mental health issues. Don't forget to add in the side effects from the hordes of psychotropic drugs we're prescribed to fight our illness. And, of course, everybody has their own opinion about how you should treat it effectively ("Snap out of it," is my personal favorite).

There's a social media campaign going on right now called Time to Change. Its main focus is to end mental health discrimination. So right now, I want you to eliminate the stigmas you have in your head about mental illness. Forget what you know because, chances are, you don't know as much as you think you do.

Take my friend, Mike for instance, pictured in the center here:

Mike was one of the happiest people I've ever known. Never without a smart ass comment, hilarious joke or some funny sexual innuendo, he was always the life of the party. He was the first to jump to someone's defense or the first in line to help out. If you needed someone to listen, you called Mike. If you needed someone's ass kicked, you called Mike. If you needed anything, you called Mike. He didn't know a stranger because he wouldn't let them stay one for long. He was a decorated officer of the law and a successful entrepreneur in numerous ventures. He shared his life with his beautiful wife, Laura, and was surrounded by friends constantly. Last summer, Mike killed himself, devastating all of us who were left in his wake. The most overheard phrase at his funeral was, "I had no idea..." We all thought we knew Mike. We didn't. 

Two weeks after Mike was laid to rest, I got the news that my friend Nate died. He was only 24, so even before finding out the circumstances behind his death, I knew it had to have been one of two probable causes: accident or suicide. Not able to fathom that Nate was anything but blissfully happy, I wanted to believe the first. Unfortunately, it wasn't the case.

I met Nate only a few months before his death, but for the time I knew him, we bonded deeply. I felt a kindred spirit in him and, at the time, I couldn't figure out why. I just knew we had it. Nate's heart was one of the most generous hearts I've ever known. His career was on the rise and everything he touched was turning to gold. As a part of the male revue show, Men of the Strip, he'd just been spotlighted on the E! network. He was on the top of the world. Nate was incredibly handsome and talented beyond belief, but his greatest qualities were his extraordinary sense of humor and the ingrained sense of duty he felt when it came to taking care of others. In fact, that sense of duty is partially to blame for his death. Nate always felt it was his job to take care of others -- to love them, to protect them, to make them laugh -- and when his own demons became too much to bear, he left this world in the way he did so he wouldn't become a burden on those who loved him. His family and close friends knew he'd fought some mental health issues, but it wasn't until he died that anyone knew just how big Nate's battle really was.

Another person whose suicide affected me deeply this year was a guy by the name of Chris. While I never met him in person, Chris touched me more deeply than some people I've known my whole life. 

He'd been a regular on Dance Party, USA, back in our teen years, which I used to watch with my mother. Chris was one of her favorites and mine. When Mom became ill with cancer, I would record the shows she missed, and we would watch them together later. She always said it reminded her of when she was a teenager and watched American Bandstand. My mother and I didn't have a lot in common, but that was one thing we bonded over. A year later, when she passed away, Chris and the others were a source of comfort and familiarity for me as I grieved. I've never forgotten what the kids on that show did for me. Last month, during an especially hard bout of bipolar depression, Chris took his own life. He, like both Mike and Nate, was extremely successful in life. He had three amazing kids, he was surrounded by a supporting family and lifelong friends, and, in 2014, he was named Teacher of the Year. He'd spent his whole life giving back to his Philadelphia community. But, also like Mike and Nate, very few people knew just how deep Chris' pain went.

It's so easy to jump to the conclusion that people who commit suicide simply don't know how much they're valued by their loved ones. Or we can't understand their deaths because they had so much "going for them." But the fact is, when you're in a frame of mind where suicide is a logical solution, none of that matters. It doesn't matter how much we're loved, how much success we've obtained, how much money we have or how many lives we've touched. All that matters is finding a way to stop hurting and for some of us, death seems like the only solution. It's not that we want to die, really. It's more like we just don't want to be alive, because alive = pain. And that pain seems never-ending.

I don't pretend to know every thought my friends had before their deaths, but I do know my own thoughts. And voicing these feelings in a public spotlight is the scariest thing I've ever done. For someone with anxiety, the last thing I want is attention focused on me; I know what people will think. I know what they'll say. And I know the assumptions that will be made. But if we want to bring awareness to mental illness and suicide, we have to start talking about it. We have to erase the stigmas, forget what we've heard, and we have to fucking talk about it.

We can't just light a candle and hope the problem goes away. We have to roll up our sleeves and reach out. We have to be honest with what we feel ourselves and we have to be willing to listen to those who are brave enough to speak out instead of act on their feelings.

This isn't a problem we can throw money at in hopes of finding a cure. Mental illness doesn't work like that. It takes being down in the trenches and getting soaked to the skin before you can make a difference. Will you do it?

Mike needed this. Nate needed this. Chris needed this. I need this.

If someone you know shows signs of depression, has thoughts of suicide or you've noticed they're just not dealing with the stress of life quite as easily as they used to, please reach out to them. Be an ear, be a shoulder, be a friend. If you can't help them carry their burdens, encourage them get in touch with someone who can: a therapist, a doctor, a mental health support group, or all of the above.

If you are having trouble getting through your day and thoughts of dying seem more promising than thoughts of living, please talk to someone. If nothing else, find help here:

National Suicide Lifeline: 1-800-273-8255

It's #TimetoChange

* My deepest gratitude to the McBride, Estimada, and Tully families for allowing me to honor your loved ones in this small way. As always, I pray for peace and comfort for your families.