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.

Canasta, for the win!

Yesterday was my Lyme anniversary. It was a year ago that I got the dreaded news that I had been infected with Lyme disease. I'd gotten it years before then, but after years of battling the unknown, it had finally been diagnosed.

In the last year, I've fought for my life - literally. I have felt more pain than I thought a person could possibly tolerate and live to tell about. But worse than the pain, was the emotional strain the disease and its side effects had on my brain. I spent much of the last year struggling with severe memory loss, cognitive dysfunction, questioning my worth, wondering what the point was to my life if it was to be filled with that much pain, and honestly, wanting to die more than I wanted to live. I've always fought depression, but never like this. I'd never wanted to kill myself.

Somehow, though, I've survived. I'm intact. I'm alive! I've had limited pain for the last month. And tonight, I won two games of canasta against my husband. I can't even remember the last time I was able to function well enough to remember how to play the game, much less strategize and win. It's a sign of vast mental improvement.

I'm too nervous to say I'm over the hump, but I definitely see the progress I've made. I have another few months of treatment to go (and at least two months being symptom-free) before I'm considered "in remission" but I feel so much better than I did. Even if this is as good as it gets, I'll take it over what it's been.

I am so fortunate to have the most amazing doctor. She's been such an incredible foundation for me through the last six months. She's literally been at my beck-and-call, providing me her cell number to text whenever I've needed her. She's knowledgeable and trained in Lyme disease treatment and without her, I couldn't have done this. All the specialists I went to over the course of the last year combined didn't do what she did. I am so thankful for her.

Thank you all, as well, for your prayers, kind words, thoughts and support. I am so blessed to have you in my 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.