I’ve been thinking about that damn proverbial horse, as I attempt to get back on it once again. Tonight I realized I’m sick of the proverbial horse, maybe it’s time to get a real horse. It would make the journey a lot more fun if I could spend my time getting back on a live horse instead of a symbolic one.
So my last post was less than encouraging, but it was exactly how I felt and my honest telling of how I felt about where I was at and where I was going. I’ve had the weekend to process everything, and begin my new treatment plan. While I call it a new treatment plan, it’s the same old plan…just making progress towards carrying on. The truth of it though is that I’m at a place I was exactly one year ago, so in many ways it feels like starting over. The good thing though is that I already have a year of work out of the way. Granted, most of that year was spent dealing with co-infections who took over, leaving Lyme in the background. But it’s time has come again, and now its time to kick some Lyme ass!
The appointment went as I expected, I’m glad I had Mom there and let her take over in making the decisions. As many of you commented on my last post, I’m lucky I have that option. I won’t go into all the details of my appt, but I think both my Dr and my mom were pleased with the outcome. I’m not particularly thrilled with the plan, but that’s why I wasn’t making any decisions.
Starting this past Saturday I began IV treatment again after a 3 week break. For a few months before that I was only infusing twice a week. Now we’re starting out at 5 times a week, and returning to my full protocol that I have been doing for the past year…only with things added as we “peel layer after layer” like an onion in finding other problems.
I have full faith and confidence in my Dr, and know that he knows what he is doing. He hasn’t been wrong yet in 14 months, so I know I’m in good hands as far as treatment.
The one thing he kept pointing out is that I’m a severe case, I have a very active, ongoing infection that is being fought, along with the 20+ years the bacteria had to claim my body as their own. So the one thing I truly have on my side is time, and I just have to bide my time until I get to the next level of healing and recovery. He went through my entire chart and showed me how I respond to each of the medicines, the improvements I had along the way right up until the crash began. Various reasons for the crash, first Bartonella, then Babesia, then my immune system. Then being off antibiotics gave the bugs a chance to party like it was 1999 all over again.
Starting over is definitely not easy on the spirit or soul. The important thing is to remember, that I’m not starting over from day 1. I’m back to a place I want to be in order to be able to properly fight this disease. Because of such tick borne infections in my body and how long I was sick before diagnosis, it’s going to take a long time, and as long as I continue to respond to the medication, then we know it’s working. When we get to the point the medication is not working, then we know we’ve made progress and we work on other issues. But right now we’re concentrating on fighting the bacteria, getting myself back to where I was when I had improvement, and then continuing on from there.
I’d like to be all rosy and happy and say this is all such wonderful news. But it hasn’t been as easy for me to make peace with it. But the truth is that it is. It means maybe another year of hell for me, but I’ve already made it through 20 months of hell…why cant I continue? Exactly, I can continue, and I will. I have no choice but to beat this disease. There are no other options. It’s not a game I can say I’m bored with and don’t want to play anymore. This is my life, and tick borne illnesses have taken my life from me. I have to take it back now. The few weeks of a break from treatment was not a rest for the weary, but rather an exercise in watching myself get sicker and sicker every day.
So the break I want is not there, it’s not an option. As my ex used to always tell me “we can rest when we’re dead, for now there is life to live”. So maybe I won’t get that break, I can take as many breaks as I want when I’m dead, for now I have a life to live…and to do that I have to first get that life back.
So it’s day 3 of returning to my full treatment protocol, including diet and weekly Ondamed treatments. It means 14 hour days to fit in all the medicines, supplements, mixed drinks etc. that I need in a day. It means saying no to public functions, get together’s with friends or families…but I’m always too willing to blow off what I need to do for what I want to do. Now my days revolve around treatment and healing, the rest will fall into place in time.
I’m grateful I have the opportunity to fight and treat this disease, no matter the toll it takes on my body or my mind. There’s no way I’ll allow the disease to win, no matter how exhausted I might feel from the disease and the treatment, this is round 2 of fighting like hell to get my life back.
Thanks for being part of my journey so far, and I hope you’ll stick around as I chronicle the “rebirth” of my treatment. Part of my treatment plan is journaling, and I plan on using this as an opportunity to share the journey with my readers. After a year of doing this, it’s not all new and confusing to me, so I’m prepared to document things as I bounce back from all the setbacks and reset the score in the fight to get my life back.