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.

Lyme Life Update

I was going to put all this in a FB status and realized it's easier just to put it all here.

I had an appointment with my Lyme doctor today. Let me just tell you how amazing this woman is. I couldn't ask for a better physician. At my first visit, we sat together going over symptoms, side effects and treatments for more than two hours. She didn't even leave the room. Today, we sat for an hour together going over what's working, what's not and how I'm feeling compared to the last visit. She's never in a rush, never trying to push me out the door. She even gave me her cell phone number so if I have questions between visits, I can reach her easily. She is incredible and has restored my faith in traditional medicine.

Last month she put me on three hard-core antibiotics. I dealt with a lot of nausea and had to orchestrate each dose carefully so I didn't take anything on an empty stomach. I'm hoping that's not the case this month, but I'll be taking precautions. Now, we've gotten rid of two of those original medicines and I'm on three additional ones. This puts me on a total of four antibiotics and six supplements. Add to that two daily pain killers, a sleeping pill, an anxiety pill, and two pro-biotics I have to take so the antibiotics don't give me an infection. Some of these pills are taken once a day, some twice. Some are switched over mid-week so my body doesn't get too used to one medication. I feel sometimes like this is all a giant game of keep-away/sneak-attack with the Lyme bacteria. I am also on a restrictive gluten-free, dairy-free and sugar-free diet. I can have minimal foods with those ingredients in them, but the more I have, the worse I feel. The last two weeks has been proof of that. The good news is that I'm learning how to better deal with what I can't have. I've found substitutes for some things and others, I just do without.

I've lost count of the number of pills I take on a daily basis. I think it's partly due to the fact that I hate that I have to take so many. I've always been such a homeopath when it comes to medication and trying to heal the body naturally. But the bottom line is, this is the fight of my life. Literally, it's a fight for my life. With the wrong treatment or too-aggressive of a treatment, I can have organ failure. Already, my body has gone into menopause because of the disease itself. The doctor is optimistic that once the Lyme is under control that normal ovary function will return, but in the meantime, I'm on two hormone replacements. So this isn't just some fatigue and arthritis I'm dealing with. It's some serious stuff with very real consequences.

One of the concerns I had, given my history with ovarian cysts was that I had another one. I've been having a lot of abdominal pain on the left side (reminiscent of what I had before my surgery in 2012 to remove my right ovary). At first I thought it was ovulation pain, but when my doctor told me a few weeks ago that I'd gone into menopause, I knew that wasn't it. We're still not completely sure what the problem is, but thankfully an ultrasound showed that my left ovary is perfectly normal and not cystic. Since surgery at this point in my treatment could send me back to square one, this was a true blessing.

My doctor has also begun treating me for bartonella (I told Midget I have Barton Bellas...unfortunately my version is pretty aca-awful), which is a common co-infection with Lyme disease. Bartonella is also the cause of cat scratch fever (not to be confused with the one Ted Nugent sings about. I think you'll need an ointment for that one). (Isn't it good to see I haven't lost my sense of humor in all this?) Since Bartonella tests aren't very sensitive (means that you can have it and the test can still come back negative), she's decided not to make me go through the expense of it. Since bartonella can be passed through ticks, fleas, body lice and through cat scratches, it's hard telling how I got it or when. We just know that it's likely I have it based on my symptoms and since it's treatable with antibiotics (hey, what's one more, right?), we're moving forward with treatment.

Overall, I have good days and bad days. On the good days, I tend to push myself without realizing it. That's one of the troubles with chronic illness: when you feel good, you want to leech as much from the day as possible but sometimes that can set you back days, if not weeks. I felt really great last week and over the weekend, so I (with Midget's help) put my office back together, which consisted of moving furniture and LOTS of boxes and totes. I'm paying for it now with pain and muscle fatigue. Those are what define my bad days (along with mood swings, mental fog and complete exhaustion, among other symptoms).

I try very hard not to complain. A positive attitude is vital to get through this but I never imagined being this young and feeling this old. Unfortunately, it's a reality and something I'm going to have to deal with for quite a while still. I've learned to control the things I can control and let go of what I can't. I've had to learn to say "no" more often. I've also had to let go of toxic situations and people. I've grown distant from some friends and lost others altogether, but I can't focus on the losses, only the gains.

One of those gains has been how supportive my family has been every day. They've really stepped up and done what needs to be done around the house. Hubby hasn't complained once about my mood swings or the days when I have no energy to do anything. And the kiddo has totally gone out of her way to do more than her share of chores to help pick up my slack. I could not imagine dealing with this disease without their support.

I probably won't update again for a while, but since so many of you have asked and have seen updates so far, I wanted to let you all know what was going on.

Long story short, I'm not in remission, but I'm on my way. I'll take it. :)

Living with Lyme

My friend NeeCee shared this article with me today:

http://www.kare11.com/story/news/nation/2014/07/27/those-living-with-lyme-disease-search-for-answers/13222519/

Those are just two examples of people who have been dealing with lyme disease. I've been somewhat vague on how it's affecting me because, for the most part, everybody's story is different and I don't feel like my story is any more special than anyone else's. I also don't want pity. Well-wishes are one thing, but I have no desire to live my life with messages of "Oh, I'm so sorry about (*whispers*) your disease." I've never wanted attention for being sick.

My family is no stranger to chronic illness or terminal disease. My sister has heart issues and type II diabetes. My mother had colon cancer and it took her life. My aunt fought and beat breast cancer. My brother has severe asthma and allergies that dictate his days. My dad had a total of six heart attacks before cancer finally took him at the age of 65. We aren't unfamiliar with sickness. But somehow, this disease caught me off guard. 

With our family history, I suspected at some point I'd get cancer. Or that I'd have to deal with insulin doses. I'd mentally prepared myself for those possibilities/probabilities. But nobody prepared me for Lyme disease. Hell, I didn't even know what the signs were until others pointed it out to me and suggested I get tested. It was the furthest thing from my mind when I started developing symptoms. But there it was on paper: Lyme disease; not acute.

It 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. The only one I didn't remember having was that bulls-eye rash. Everything else was there, and while it may sound odd, I was hoping it 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 two 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.

Anger is a very real part of this whole thing. I don't, however, know if it's a symptom of the disease or a side effect of the diagnosis. I spent a month on oral antibiotics which made me extremely physically sick a few times. Then I spent a month on IV medication through a PICC line that totally hosed my birthday month all to hell. Anger at my circumstances was a natural reaction to what I was going through, I'm told, but I still feel guilty about it. I've never been real tolerant of bullshit, but since being diagnosed, I've noticed it has only gotten worse. I hope now that I'm done with medication and I'm on the way through my post-treatment phase that it will lessen. I try to take each day as it comes, but I notice that I have to force myself to have good days sometimes. It doesn't come as easily as it once did. That pisses me off, too. Sometimes it feels like a never-ending cycle in that respect. 

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 remission from chronic lyme disease, 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 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 3 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. 

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. I'm still working on the balance there.

But in the meantime, I'm just taking things day by day, breath by breath.

That's the Lyme life.