Finding YOUR way

If you or someone you love has Lyme disease, or chronic Lyme disease, you are probably very aware of how debilitating it can be both physically and mentally. And then there's all the confusion. The tests are vague. The "official" (CDC) take downplays everything. You don't actually look sick. The ones that do agree that…

Chronic Lyme pt13 – It wasn’t done with me

It has never been as bad as it was when I was undergoing treatment, but I have had a couple flare ups over the years since I quit treatment back in 2010. At least I think that’s what they were. There’s always the “going crazy” aspect of Lyme disease. There have been times when brain…

Chronic Lyme pt12 – And then I was done with it

I now know that Lyme was not done with me, but I was definitely done with it. I was done with the pile of pills that made me gag when I took them and gave me vitamin burps for hours. I was done with revolving my life around my treatments. I was done with having…

Chronic Lyme pt11 – The plateau

So I was doing my IV antibiotic treatments, taking every supplement anyone that sounded like they knew what they were talking about told me to, taking a steady stream of pain medication and heart medication, seeing an acupuncturist as often as I could afford, and after 6 months, things did seem to be slowly getting…

Chronic Lyme pt10 – And the months went on…and on…

I had good days and bad days. On the good days, my mood was better, the pain was less, and I could enjoy the little things like my kids, cooking, day trips. I even had a couple girls’ nights out with some friends. The bad days were really bad. I was in bed, in pain,…

Chronic Lyme pt9 – And the months went on…the other symptoms

Brain fog. Yep, I had that. It felt like “pregnancy brain,” only way worse. Sometimes it was embarrassing. I was so dingy! Sometimes it was frustrating. I couldn’t read anything. By the time I finished a page, I’d have to start over because I already forgot what I read. And sometimes it was dangerous. I…

Chronic Lyme pt8 – And the months went on…and there was pain

As generally easy as the treatment was, the months were not. My pain multiplied and escalated. I still experienced the strange “bone” pain, but it spread to other parts of my body to the point that there were days that I couldn’t even pinpoint where it hurt. It felt like everywhere. There were times when…

Chronic Lyme pt7 – The rules and other annoyances

The treatment itself wasn’t horrible. Once I figured out timing, it was pretty streamlined and easy. But the rules were constant trouble. Don’t get the CVC entrance area wet. Any contaminated water getting inside the opening could cause a massive infection. At this point in my life, I was engaged and was growing out my…

Chronic Lyme pt6 – The snowstorm and a dry tube

Sometimes my tube would dry out a bit (the saline usually kind of sits in there from the last flush). One weekend, we got caught in a snowstorm during what was supposed to be a day trip, so I didn’t bring any of my supplies with me. We ended up stranded in a hotel about…

Chronic Lyme pt5- IV antibiotic treatment

I had my CVC surgery at the first available appointment. The surgery was outpatient, but I was put under (sedated) for it. When I woke up, I had a tube, clear, about the width of a pencil, and about 12 inches long sticking out of my chest, and two sets of stitches. At the place…