This week I began treatment again, after a five week break. I honestly feel like I would have been comfortable with taking another week off, but I really didn’t want to have any sort of relapse, so I decided to get back to the grind. I would not advise anyone to do this, especially without consulting your doctor, I ended up tweaking my protocol.
I shortened the amount of days of my “week one” of treatment, and swapped out one of any antibiotics, as I am still trying to heal my gut. I did get the okay technically from my Lyme literate naturopath that I see locally, and he completely agreed with my game plan. I will say, although it wasn’t by any means a 100% cure all changing this out, it did help a lot to not completely destroy my stomach. I at least went the week without horrific stabbing pains.
Treatment was easier this week, although I really still struggled, especially toward the end of the week. I have been really busy with work, some basic errands, getting out Christmas cards, and trying to clean up my house. It is exhausting.
Exhaustion. For those of you who do not have a chronic illness, one of my pet peeves is comparing your “tiredness” to mine. “Ohh, this weather makes me tired too.” “I got up really early this morning, I need another cup of coffee.”
On this topic, my biggest pet peeve, one that really makes me want to punch you in the face is, “If I sleep as much as you do, I would be even more tired too.”
What? No. Shut your trap. My body is fried trying to do the things that you take for granted.
Imagine not sleeping for weeks on end, or no matter how much you sleep, you wake up feeling like you have never gone to bed. You feel like you could fall asleep at any given moment, and that is what I usually do. I will be in mid conversation, and curl up in a ball and fall asleep. Sorry, I really didn’t think you were that boring, I just have to force myself to keep my eyes open. No. You do not get it. At all. That is my Kimmiecakes rant of the day.
I found myself having a little bit easier time in the mornings, although I was having a hard time keeping up with conversations, and constantly drawing blanks. I couldn’t remember for the life of me what the topic was. It is like a quick wave hits me, I can almost feel like there is pressure in my head, and I forget everything.
My first day of treatment, I started out by getting into a full blown panic, looking everywhere in my pockets for my keys, if they slipped in between the seat, in my purse, only to realize that my car was running. I kept trying to take my sunglasses off my head, even though there were none. So it is gonna be that kind of day, huh? Blah.
I was ticking in the morning, doing my thriller dance, and hit my hand on the office desk while trying to work. My coworker is at least use to it by now, and continues on like nothing happened. At nighttime I tic while laying on the couch once I get up from my nap and get a little time with Dave before he goes to bed. I feel pretty bad that we really don’t spend a ton of quality time together, since I am next to him fast asleep.
Although I don’t think Daraprim has the same effectiveness as some of my other antimalarials, I definitely was having some Babesia herxing or flare ups. I was having hot flashes, and when I would wake, I would be absolutely drenched in sweat, and I once again felt like a sumo wrestler was sitting on my chest. I have been running a fever, my highest at 101.5, so it just makes you miserable. Everyone knows what it is like to be feverish. Add that to the mix.
Even with our wood stove going, bringing our house up to the 80’s, I would sit in the afternoons with a winter coat on and covered in blankets. Then the opposite, I would strip down, as I felt like an inferno. Hot cold, hot cold.
Yesterday was really my toughest day of treatment, although I was on a lot less antibiotics. I think everything just caught up to me. I was in a fog, dissociated, and I could not feel my legs at all. I had to go to the bank, pouring sweat, and rocking back and forth. I really wanted to grab a salad for dinner, and after some debating in my head, I decided to go for it and make my way through the little grocery store to their salad bar. I was feeling brave. Luckily, there wasn’t a lot of people in line, so I was in and out of there. I sat in my car for several minutes and made my way home to throw some dinner in the oven and start my nap routine.
I was pretty proud of myself, even though I was feeling nauseas and my body was weak, I pushed myself and used my recumbent bike. I only did 10 minutes, as it was excruciating, but I know I need to keep my legs moving. My massage therapist has told me this week that I have absolutely no circulation in my legs and feet. Dave helps me out, as he will match my time when I use my bike, so I at least have some motivation there to keep going.
I had great news this week, I finally have a date set to get out my heart monitor. Yipee! I am really excited that maybe this chapter of getting my health back is finished, as I found my answer, POTS, which I kind of knew all along, and with medication along with knowing what I should do to help with this debilitating syndrome.
I won’t have to deal with my cardiologist, and there will be a lot less stress in my life. As many of you know, my experience with all of this has been a complete nightmare. I will no longer have a constant reminder the size of a stick of Trident gum in my chest. Buh bye.
As for this weekend.. it is Dave and I’s wedding anniversary tomorrow. I am not too sure what we will end up doing, probably something simple like go out to breakfast. We aren’t big celebrators, life is just easier that way. In fact, we had no idea our anniversary is on the 13th. My Mother reminded me, and I checked my Facebook account, and sure enough it was. I thought it was the 17th, Dave thought the 19th. See? Not big celebrators.
This upcoming week is my phone conference with the clinic. In all honestly, I am nervous as hell. I have yet to tell them not only did I tweak their protocol, I took a five week break from it all. I really don’t want them to get pissed at me, but I need to be honest about it. I am going to beg and plead with them that I want a lighter protocol. Without a complete crash, that has got to mean something? I really need to voice my concerns.
It has been a long time with a whole lot of nothing, and something has got to give. I want and need change. I am afraid I am going to sound demanding, but I know what is right for my body. And this just plain isn’t it. Please wish me luck and say a prayer! I think I could use it at this point.
I will let you all know how it goes! Wishing you all a great weekend!