// October 7th, 2010 // 2 Comments » // Eric's Blog
The last 2 weeks have been absolutely miserable in my little Lyme world. While fighting Lyme, I’m also dealing with 2 pesky co-infections that keep rearing their ugly heads and turning my world upside down. In fact the past few months have been really bad. To be honest I think I’ve kept myself in denial about how bad they’ve been. Any of you suffering with Lyme will understand that sometimes we have no choice but to block it out.
I remember my mother comparing the “bad days” to childbirth. Once it’s over, you can’t remember how truly agonizing it was. Until the next time it happens again, then it kind of takes your breath away when you remember just how awful it was.
So the first backslide was Bartonella. A major flare up we got under control right away. Still treating that, but for the most part it seems to be behaving. But then Babesia came back, and the treatment for that made me so sick I couldn’t believe it. It was a short course of medicine this time, but I’m just not bouncing back. I talked to my Lyme Dr this week, he’s doing some tests to see if there are some other things going on keeping me down. But I’ve just gone downhill every day this week.
Until today, when it felt like I hit rock bottom. I’ll save you the juicy details, but let’s just say fish oil is gross enough going in…but when it comes back out, suddenly, and through your nose, it turns out to be one of the grossest experiences I’ve had with Lyme. I wasn’t really sure I was gonna make it through today, but so far I’ve made it to 9pm, so I have high hopes to make it through the rest of the night. I’m counting on a beautiful tomorrow, it’s the only hope I have because another day like today just might do me in.
In the middle of all this I realized today is my 18 month sickerversary. But then I redid my calculations and realized it’s only 17 months. It was 17 months ago today that I woke up too sick to go to work. 20 years of misdiagnosed problems, things Dr’s couldn’t figure out but would either just go away on their own, or else they’d tell me I had to live with it, all come to a head on that morning. I have been sick since. I managed to work half days here and there for 2 months from that date, until I was finally so disabled by Lyme disease and it’s co-infections I haven’t been able to work since.
It was 5 weeks after that morning I woke up so sick I was finally diagnosed with Lyme disease. An acute case that would be easily treated. My Dr told me I’d feel better in a few days. I called work and told them the good news and prepared to be “better” by the weekend.
But I didn’t get better. I got worse. I have been treated for Lyme disease for 16 months, with a total of 7 days “off” of any form of treatment in that time. I lost pretty much everything I had, ending with me having to move home in January as I began IV treatment.
I’ve been treated by a LLMD (Lyme Literate MD) for almost a year now. It has cost over $50,000 out of pocket in that time, with no end in sight. My family and friends will stop at nothing though to make sure I get the treatment I need to get back any portion of my life. Without them I wouldn’t be here, for several reasons. Beyond the treatment itself has been the support I’ve received. On the days I can’t fight for myself, I fight for those who love and support me. On the days I don’t have the power in me to keep fighting, I draw on the power and support of my loved ones.
There’s a books worth of things I’m thankful for. Things I’ve learned to appreciate because of almost losing them completely. This morning I woke up and read of another suicide of someone with Lyme. I think this is the 5th one I’ve heard of in recent months. Along with that story I heard someone say that most deaths related to Lyme disease are caused by suicide. I don’t know how true that is, or if there’s any science backing that up, but it wouldn’t surprise me. With Lyme there is no end. Some people feel better after 3 years of treatment. Some are 7, 8 or 9 years into it and still having to manage the disease on a daily basis. Some have been in bed for years, and have no hope of getting out of bed. Living with Lyme is brutal. You’re not given a certain amount of time left to live, and you’re not given much hope for a time frame for recovery. There are many days that death seems like the best medicine. But we don’t give up, we keep fighting. My heart breaks for those who felt they had no other choice but to end it. It goes out to the families and friends of those people for their tremendous loss.
I join the thousands of other people who’ve been trapped in this “Bermuda Triangle” of illness. I’m not the first. I won’t be the last. My day to day struggles are nothing in comparison to what others are going through. I’m still relatively “new” to this disease and all it entails. And yet, it has still robbed me of the past 17 months, not to mention the past 20 years of problems it caused without anyone knowing it.
Chances are I’m not even halfway through the treatment I need just to get back a portion of the life I once had. My days of thinking I’d feel “better in a few days” are long gone. I know I’m going to have to manage this for life, but getting to that point is a dark and lonely journey.
But I, like the thousands of you out there, will keep plugging along. There is hope…no matter how dark things seem in the depths of treatment and illness. I’m thankful to my Lyme friends for the encouragement and hope they give me, and to my family and friends for the support and love they give me. That along with the right medicines and supplements will get me to where I need to be. I am one who believes everything happens for a reason, and this is no different. While I still struggle daily with some of those reasons, I know I am where I am at this moment in life because it is where I am meant to be.
I wish my mind were clearer to properly convey my thoughts, but I hope that on this 17 month sickerversary, on a day that I’m suffering worse than I have in many, many months, that I could share some of my thoughts and let you all know I’m still here, and still fighting with everything I have. Today I’m fighting minute by minute…I know good days will be upon me again, where I’ll be able to see the bigger picture and the fight from day to day, week to week, and eventually month to month. I thank you all for your support, love, prayers and laughter. I no longer fight for myself, I fight for all of us. I am not alone. You are not alone. No matter how dark this minute may feel, remember we all have hope in the next minute…and then the one after that, until eventually we’ve made it.
We will make it, no matter how ugly the journey getting there may be, we will make it. Never give up hope.