Living with Lyme Disease (LD Post #6)

So here we are at the beginning of 2008. I had just moved back to Florida and started dating Daniel. It had been a long, long time since I had dated anyone. 


I was still taking a lot of pills. The amount varied, depending what I was on at the time. But between all the prescriptions and the nutritional supplements, I took something like 15-30 pills a day. Thankfully, I don't have a problem with taking pills. But I have definitely grown to not liking it. Maybe because it's a reminder that I need them?


I was still dealing with a lot of fatigue and weakness. I had always been a very active and strong (working in the greenhouses forces that one on you) and my body lost a lot of strength during my years of illness. It had a lot of damage to recover from. 


I was going back to see my doctor in NJ every 3-4 months, and she continued to monitor my progress and switch up my medicines a bit. I think the last time I saw her was in the spring of 2009. I had kind of plateaued in my treatment. I was still taking pills and spending lots of money (especially if you consider the costs of traveling to NJ from FL) but not seeing much more noticeable improvement. 

I stopped taking most of my medicine. I was also tired of taking antibiotics. I think by this point I had been on them for 1 1/2 years. Lyme disease isn't good for your body, but neither are a lot of antibiotics! I didn't notice a big change in how I was feeling when I stopped taking everything. 


And then I got sick. It was probably in November of 2009 and I had a bad cold. More often than not, colds for me turn into sinus infections and I have to go on antibiotics for them. I had yet to find a GP here in Florida that I liked, so I went to a walk-in clinic. This was also when the swine flu was going around, and I wanted to make sure I didn't have that, being the immunocompromised individual that I am.


Thankfully, no swine flu. But they put me on antibiotics and prednisone (a steroid), which if you remember from a previous post, it's a bad thing for people with Lyme disease. But I didn't know that at the time. It's how I found out. Almost overnight, my joint pain returned along with some other symptoms. I stopped taking the prednisone after a little bit of research and started looking for a Lyme-literate doctor here in Florida, because I was afraid I had just given the Lyme disease a foothold.


I don't remember how I found my current doctor  - it might have been on from some people I talked to online who had Lyme disease. And if you click on this link, you can read a little bit about why it's hard to find a good Lyme doctor. 


I met with my new doctor and we spent a lot of time going over my complicated history (seems to be the mark of a good doctor - they spend time listening to you before making snap judgments). As for the money side of things, he was another doctor that did not take insurance. So we just focused on the important tests to save some money. Why did I have to get a politically incorrect disease?


So we ran the essential tests to figure out what was going on with my health. And we found out some interesting things!

On the Road to Recovery... and Marriage!

If I remember correctly, I lived in NJ for almost all of 2007. I made 4-6 trips back to Florida during that year because I still had work responsibilities I was overseeing in Florida that required me to check in on things. 

During the times I was in Florida, I started visiting a church that two of my dear friends also attended. I don't know that I would have gone there on my own if they hadn't been there - it was a 40-45 minute drive from where I was currently living. But I was desperately feeling the need to connect with friends, and the long battle with illness had left my energy depleted. 

Have you ever considered the amount of energy it takes to develop a friendship? And to maintain it? I found a lot of my friendships slipping to the wayside during my illness because I lacked the energy to spend on them. And I was dealing with serious depression and an inability to focus, coupled with headaches... well, it didn't make me the greatest person to be around and I didn't really want to be around people too much because it sapped me of my very limited energy. Compound that over 5 years and... well, you get the picture. 


Back to the story. I was starting to feel better and hope had been restored to me (which did wonders for my mental well-being). I figured I would be moving back to Florida at some point, when I no longer had to see my doctor as frequently. And I was hoping to find a church that preached unashamedly from the Bible. 


I was visiting the church in Florida sometime in September of 2007 (I had been diagnosed at the end of July and had started to see noticeable improvements in my health by this point). After the service, I was talking with some friends and was introduced to Daniel by his brother (who I met at VSO camp that summer - I'll have to write a whole other series of posts on camp!). I don't even remember what we talked about at that point. 


I do remember talking with a few friends who had inquired about my health, and I told them about my diagnosis and how I was finally starting to feel better, that I felt almost like I had been in a mental coma over the past years and that I was waking up from this cloud that had enveloped me. I remember being so enthusiastic, so excited that it seemed like I was finally getting my life back - the life that I had given up on ever having again.


Daniel was there as I was talking, even though he doesn't remember the conversation now. I ended up going out for lunch with him, his family and a few other friends.  


I flew back to NJ that week and... Daniel and I became friends on Facebook. Such a huge deal, I know :-) It kept us in touch, and we talked about playing racquetball when I was back in Florida again. I had played a little tennis when I was 14. Not well. Never racquetball. 


But when I was back in Florida in November, we played racquetball along with his brother, Jacob, and our friend Aaron. Those of you who don't know Daniel should know that he is an extremely talented athlete and he works in recreation. He showed me the basics of racquetball, but it didn't help much. I managed to unintentionally hit all 3 of them in the head with the ball during the course of the game(s). Thankfully, "good racquetball player" wasn't on Daniel's list of requirements for a wife. 


So we hung out a few times after that and we started officially dating before I went back to NJ for the December poinsettia rush. We spent a lot of time on the phone while I was up there, getting to know each other, and I moved back to Florida right before Christmas. 


Well, that's enough for now. Not much about my battle with Lyme disease, but way more enjoyable to reminisce about! We'll get back to that in the next post.


Thanks for all your comments and encouragement!