Every Single Joint

Everyone who has followed my journey since I began blogging knows that holidays have historically been very rough on me. This has continued into the oral antibiotic phase, which I will continue for at least another year. In fact, I have had a much rougher battle against the oral meds than I did the IVs, so much so that at my last appointment in August, I asked Dr. J if we should consider putting the PowerLine back in. The jury is still out on that one. We will revisit the topic in October when I go back to DC. It's been so bad since the removal of my PowerLine that I didn't have the energy to write new posts, as I was adapting the old blog into a book, hoping to get it out there to help as many people as possible. Yesterday I found out that the book should be ready for release in November.

Today I am only two days into my holiday and every single joint I have from my pinkie toe to my upper cervical area is SCREAMING in pain and swollen to the touch. I had planned on trying to get some work done tonight, but I can't concentrate, so I lay here on my bed, from where I have worked for two years now, and write instead. I know I will be parked here for the night because I just went to brush my teeth and every step felt once again like shards of glass were beneath me. My right ankle feels as if it might be dislodged, but I know it's not. The arches of my feet are killing me. Damned Bartonella. And then there is the Babesia which has reemerged. I have been having some rages, now subsided by some meds adjustments, but mostly, that gross sticky night sweat is back and my headaches are more frequent.

This summer I spent the entire time in the dark in my bedroom, with the exception of a few days when I made it outside. I did make it to the deck for 15 minutes here and there. It was, needless to day, not what I had envisioned for my summer. Tonight it's supposed to be in the 40's so, summer is over. I will have to wait until next year. Hopefully then I will feel the way I thought I would this summer. I also had an emotionally rough summer, so I shut down completely for a couple of months. Such is life.

I just try to keep my eye on the ball, but it's hard. So many people just don't get it and while the vast majority of people are very supportive, you would be shocked to know how many unsupportive people there are out there who have Lyme themselves. One would think that we would be a stronger force together, but unfortunately, we have issues with our brains that make us angry, in pain, and emotionally unstable. I saw so much of this in the Lyme Literate Doctor's practice I worked in before that I made a conscious decision not to read other people's blogs or attend support groups, because mostly what I have witnessed is that many people with Lyme, including me some days, are just grumpy. And rightfully so.

People think they know you just from your own writings and this is certainly what we set ourselves up for when we begin writing, but I have always maintained that blogging is a means I choose to process what I am living with. Yes, what I am living with. No two people's Lyme experiences are the same and so my experience is mine alone and not even some of my closest loved ones get it. I don't want to talk about it. It makes me cry. I write instead, hoping it will help people out there. It's what I can offer right now. Maybe one day when I get to the long-term remission phase that Dr. J keeps mentioning, if I ever get there, maybe then I will have the energy to help others in another regard. Until then, this is what I can do.

I have no energy for research, nor can my eyes look at a screen for too long. I tend to write my posts in short chunks. I don't ask others for advice, rather support. I go to my doctor for advice, because I am not a doctor, even though I am very familiar with the clinical side of Lyme.  I am interested in the research, the articles, and whatever is out there, but I do not search for it. Between telecommuting from home as much as I can muster the energy, which has been a dramatic decrease in July and August, taking care of my daughter, and working with my editor and publisher to get the book out at a pace I can handle, I am spent.

Sometimes I stare at the author's photo of me because it took so long for the makeup artist to get my face to look like that I wonder what I REALLY look like to others. I am so used to seeing my own face and now that I am having real issues with hyper-pigmentation on my face, I am starting to look a little different.

It's a long and winding road for sure, but one that I have to be up to the challenge for. Some days I am not up to the challenge and as such, my daughter learned over the summer to get dressed, brush her teeth and come in and snuggle with me watching some cartoons while I lay there in bed with her until one of my parents came over to play with her or take her somewhere.

Today I hired a new assistant, which feels like a relief. Looking forward to knowing someone has my back again, even though it's only been a week since my last assistant moved on. It will be nice to have someone around to help with what I cannot keep up with, which is pretty much everything.

It's 8:15pm now and I have been pretty depressed lately, more so than usual, so I am going to take my nighttime meds and go to bed early, as I have been doing for a while now, even though sometimes I am still up past midnight anyway. I am feeling my fifth anxiety attack of the day make it's way forward, so it's time to acknowledge that all of this venting is not helping my stress level. Time for Plan B, maybe C.  I'll write again in a few days, even though the Lyme talk often sounds like a broken record.