That Little Black Rain Cloud in the Background

One of the hardest things about Lyme Disease is that even if you are lucky enough to successfully complete treatment and reclaim your life, it feels as though, somewhere in the background, constantly following and hanging over your head is this little black rain cloud. While it's little and very often unapparent to even close family and friends, it's always there...the possibility that your body may not be strong enough to continue to keep all that nasty bacteria at bay, and your active Lyme Disease will return in full force.

When I was able to wrap up my treatment in the fall of 2010, we knew that a relapse at some point was not only possible, but was in fact, very probable. If you have followed my blog you're probably aware that I, like so many people suffering with Chronic Lyme Disease, went for five-and-a-half long and painful years before I was finally steered in the right direction, (NOT by one of the myriad medical doctors that I had seen for my ever-declining health during all that long time,) but by a fellow Lymie, who herself along with her husband had been suffering with Lyme Disease for years. I was one of the lucky ones, and my test results were positive. This helped me immensely in terms of moving forward with the very expensive and difficult treatment process.

I am a huge believer that when it comes to major, life altering and chronic illnesses, you've got to use several criteria in any decision making process regarding your treatment plan. For us, in addition to trying to regain my health, our quality of life as a couple and my quality of life as a person, (treatment is horrible, and in fact, in the short term, many times A LOT worse than just being sick,) and our financial health as a family.

While the LAST thing anybody wants to be thinking about while dealing with a life-altering illness is money, financial considerations are front and center for most of us facing a major illness. I would say that Lyme Disease is even worse than your average illness in this respect, because of all the politics and the total chasm that has developed in the medical community over whether or not Chronic Lyme Disease even exists. This argument among medical professionals has created a loop hole through which insurance companies are able to jump to avoid being involved in the EXTREMELY EXPENSIVE treatment for Lyme Disease. This leaves those of us who have watched our lives crumble in front of us wondering how we'll even begin to start to try to regain our health. Like so many people struggling with this horrible illness, money was also a factor in our decision making process back in 2010. I just could not imagine myself on antibiotic treatment (with it's massive physical, emotional & financial demands) for 5 or even 10 years, which is sometimes the only way people with Chronic Lyme Disease are able to keep their debilitating symptoms at bay.

Long story short, (and trust me, it is a VERY long story,) after five-and-a-half years of unexplained illness, and another two years of intense and difficult treatment, my symptoms finally began to subside. I discovered wonderful nutritional supplements that helped immensely in terms of energy, strength and general wellness, and in October 2010, I finally made the decision to move on with my life. The last two plus years have been wonderful, with barely any thought of Lyme Disease. I still had fairly regular bouts with fatigue and joint pain, especially if I wasn't careful about getting enough rest, or if I pushed myself too hard. But with only these two symptoms, I considered myself extremely lucky, especially considering the length of time I had been sick before getting adequate treatment.

During those two wonderful years, and while I was finally healthy and off antibiotics, we were able to have two beautiful babies, who are the light and joy of my life. If for no other reason, all the physical pain, mental anguish and financial drain of a long treatment process was worth it for these two wonderful kids...and PLEASE...do not comment telling me about how we should get them tested because they might have Lyme Disease. DUH. I haven't made it ten years into this illness without a full knowledge and understanding of all the implications it has for me and the people I love most in this world. Thanks. I'm serious...PLEASE do not comment about that. I'm really tired of being asked if I'm aware that I could have passed it to them. YES. I AM FULLY AND PAINFULLY AWARE. And, that was part of our educated-decision-making-process before we started our family. We are very blessed and for the moment they are both very healthy and very happy babies.

Fast forward to 2012, and we had a very stressful summer with a major move, our second baby due, and my husband starting graduate school in Veterinary Medicine all within a three-week time frame in August 2012. The baby ended up coming early and was actually born on the day he started classes. Needless to say, it was an extremely stressful few months, and being in school these past six months has not been any less stressful. My husband's studies are extremely demanding, which means I've had to be home with the kids almost 18 hours a day by myself. Translated: I don't get any rest. Couple this with the fact that we are living in a new town where we don't have much of a support network per se, and that has made it more complicated for me. Needless to say, I was not careful in thinking about or planning for the amount of rest my body requires to stay healthy.

In October, after starting to heal and feel better from the birth of our second baby, I really thought I was on the mend and would "bounce back" any time, just as I had done a couple months after our first baby was born. Well, in mid-November that little black rain cloud that I talked about at the beginning of this post came to rest directly above me, and I started noticing for the first time in over two years, obvious symptoms of my own unique brand of Lyme Disease. (Did you know that each of us Lymies has our own unique brand of Lyme Disease? Well, we do. And if you have Lyme, you know exactly what I'm talking about. LD expresses itself differently in each person it infects, but over time you start to be acutely aware of the ways it expresses itself in you.) These symptoms were different than the fatigue and occasional joint pain I have come to expect and adapt to. These were blatant, clear signs that those terrible little bugs were starting to be active in my body again.

My husband and I started trying to make some changes, but just didn't have a lot of options. Still, it wasn't an everyday occurrence, and we were hopeful that with some rest and a little TLC, things might resolve. In December I unfortunately came down with the flu, or some sort of nasty bug, which took me a full 8 weeks to finally get rid of. After that, for the last month, I have been fighting with a steady increase in both the number and intensity of my old, pre-treatment laundry list of symptoms. In true Lyme Disease fashion, there are also several new symptoms thrown in, and for the past two weeks it's been very difficult for me to get out of bed or off the couch. I am also currently dealing with 15-20 different symptoms on a daily basis. If you are struggling with Lyme Disease, you will know exactly what I'm talking about.

It's a terrible thing to have to type, and I'm too disappointed and scared to ever be able to clearly articulate how I'm feeling in words, (oh wait...that might be another symptom...ha.) But I think it's obvious that these little critters have made a comeback, and we're going to have to figure out what to do to try to pull 'em out of hiding and kill 'em all off...AGAIN.

I will be blogging once again, since for me it's a healthy release. I really think it's therapeutic, since it's the only time I get to share my true feelings and thoughts, uninterrupted. It's also nice to have a permanent record of all the ups and downs of this crazy illness. Ironically, about six months ago, I started working to transfer all my blog into a book, since this has been a major part of my life for almost a decade. I have always loved scrapbooking and photo books, and journaling is not my strong suit. I was actually delighted to re-read most of this blog and find the detail with which I recorded so many things. I'm going to have to draw on a lot of the positivity, faith and hope of four years ago for this new path ahead. Please pray for our family, and wish me luck!

And with that, my fellow Lymies...I'm back. :(