Monday was the start of my new protocol. It is a slightly tweaked version of my antibiotic schedule of last month. I was a little scared, but I knew that I can’t worry about what may happen. If hell comes my way like it did before, I will deal with it. Just like I did last month, even though I finished with a lot less optimism.
The night before, I ended up staying awake for most of the night. I didn’t really want my “holiday helliday” to be over, yet in a lot of ways it was just as bad if not worse than actually being on treatment. Without a choice, morning came, and it was back to the grind. It was another freezing morning, even though I knew it was just me. I ended up skipping my bath thinking.. eh, I washed my hair yesterday..fuck it. Sometimes you just don’t feel like it when you don’t feel good. I am sure many of you can relate. If you can’t because you aren’t sick and but definitely love me. Still love me even when I’m grubby. 🙂
The regimen of my day was : 2 Septra DS, 1400 mg Artimisinin, Leucoverin, Daraprim, Lactoferrin, Xylitol, and my Meropenum and Tigecycline IVs. Joy. This week is literally the same protocol as my first week of last month, so at least I have an “edge” knowing things to make it easier. And Dr. J is positive it will help to really make sure I do more lactated ringers on my days off.
I took all my pills and headed off to work. I was about 30 seconds down the road and realized I left my scripts to be filled, and my car payment behind. Oh poop. I was counting on my fingers how many days it will be until my car payment is due. It should be fine. Don’t turn around. And I didn’t turn around. Instead, I obsessed over not grabbing it for the rest of the trip to work.
I was pleased that although I was very light sensitive and having my usual leg and feet problems, I had a lot more mental clarity. With that, I worked on our new computer program, and transferred everything needed that they were going to pay a specialist to do. Yeah, I am pretty awesome.
When I got home from work, I still was not too cloudy, so I even started working on my taxes! I didn’t end up finishing it, as I was definitely fading after a while, but I put a good dent in getting it ready. I don’t like to go to an accountant, especially since I took three accounting classes in College, so I should know how to do everything. Having being chronically ill, there is an abundance of bills. Doctors bills. naturopathic bills, surgical bills, therapist bills, eye appointments, near weekly prescription drug receipts for an entire year. My kitchen and computer room are flowing with a years worth of receipts. And then I have to categorize. And take out the supplements. Done and done. And then I couldn’t find Dave’s social security card. And the stress began…Shoot me in the face, please. Okay.. no more accounting for the day… I am done.
Starting a new round of antibiotics, I shouldn’t have overdone it, but feeling “clear”, I wanted to take advantage of it. I knew I would pay for it later. While having dinner, (I made the only thing I really know how to cook, chile), I was talking to Dave about how I felt about starting this new protocol, and feeling so bad on my break. Which one is worse? I don’t really know. It is a fair trade at this point.
And then Dave said something to me. “I didn’t realize your break was bad at all. You seemed to look like you were fine other than some of the leg issues and the first days seizure.” It kind of resonated with me.
If anyone knows me or has seen me in the past nearly year and a half, they will know that Lyme and co-infections have nowhere been an invisible illness for me. Becoming underweight when I was never on the low end of the scale, jaundice or paleness, raccoon eyes, wobbling around to be able to walk or having to take trips in my wheelchair, and most of all my verbal and physical tics made it impossible to not notice. If you haven’t seen my “About Me” video, you really should. It is a reminder to me that I have made progress. Even though I still tic a few times a day, I am nothing like I was. It also shows the world how Lyme manifests so much more of you than swollen knees and a rash like so many are taught.
It made me realize… I now am at the point that I almost have an invisible illness. There are many days that I am not this way, but this is what is happening more and more for me. It is a night and day difference in how I appear on the outside, and how much things have calmed down for me. To the world, unless you see me tic or walk around on a bad day, you would think I am just a girl that had a few too many margaritas. Everything is normal. Invisible.
I guess it is one of those situations that you wonder which is better. I feel like having more normalcy, and no one looking at me strange is a blessing. I am hoping my tics stop for good, but we’ll see. One of my doctors has told me that I might have permanent damage, possibly by antibiotics, but I would like to prove him wrong. But it is so frustrating explaining how you feel, when you don’t look sick. I feel like people expect more of you. Are less understanding or compassionate. They just don’t get it.
This past month, Lyme and confections got the best of me. There was no invisible. As I said earlier looking back at my treatment in the past, anyone that saw me knew there was something seriously wrong. I looked like death. I felt like death. Everything in my body was going haywire, making me even sicker.
So which is worse? I guess the question to ask is would it be better if your disease was invisible? I am not talking about how you feel, this is if it was equal across the board. Do you ever feel like you want people to see what you feel inside?
At that moment I wished I did, when that was said to me. I wasn’t mad, because I DON’T complain to others, but it kind of struck a chord with me. I felt terrible during my break. I only wished it would have been a more welcomed time off. But it wasn’t.
Is that bad? Bad that at that very moment I wished he could see what I felt inside? He has been more than supportive, and gets an A+ on his vows to me, and has learned a lot about Lyme, but people forget that things still can feel the same, but slowly more and more after time, it is invisible. Invisible pain. When I was in a very bad place, no one doubted what was going on with me.
So I guess my honest answer is that I do sometimes wish it wasn’t invisible. If anything now, although I look better, I feel things much worse than I use to. Getting my immune system in a better place, and treatment beginning to work, I do look better. Thus, people assume everything is okay, even if my body is screaming inside.
In a weird way, I think it would be a different world if you could see how everyone is feeling on their outside. There would be no judgement. For me, I like nothing but normalcy, but I guess in those situations, those comments, I want my ugly insides to show. I am not okay. Just a thought. A Kimmiecakes rant.
In the evening, it was time for two Marinols, a big glass of almond milk, and to do my two IVs. Everything hurt during my IVs. My spine and neck were killing me, and I couldn’t even sit on the couch, I needed to lay down, and try to elevate my feet to help with my circulation. Drip drip drip. An hour and a half later, it was all done. I just had to do a repeat of my orals, and I was good to go.
After the clusterfuck of antibiotics, I kept burping up my dinner, and my stomach was going crazy on me. Toilet time. Couch time. I was exhausted but I knew there was no possible way I would be able to fall asleep. I stayed up and watched old reruns, and finally go to the point that as soon as I hit the bed, I was out like a light. Day one down.