October Part 3 – It’s Time

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Once again, I haven’t written in awhile. For the most part, I have still been sleeping my life away. I think I am still really in recovery mode from having mono. My swollen glands have calmed down quite a bit, but the exhaustion from it has been pretty overwhelming and I have a sore throat that just won’t seem to go away. Unfortunately, this all has caused me to really slack on working on treating POTS, so the dizziness, lightheadedness and weakness trying to stand a lot has been much worse.

My recumbent bicycle is right next to me in my living room while I am laying on the couch, yet there is no oomph to be able to get on it. I have only been able to do a whole 10 minutes on it the past week. I hate looking at it at the moment, knowing I can’t seem to get on it at least for a few minutes each day.

My symptoms have been coming back pretty full force. I have been really light sensitive, depersonalized, have numb jello legs, and foggy. At night, my Bartonella feet hurt so bad it is nearly impossible to try to get myself from the couch to the bed. I try to walk on my tippy toes and that seems to help.  I have really been trying to push through it all the best I can. I think that I must be having a Bart flair, but the same old Babesia symptoms : chest pain, air hunger, hot flashes, all seem to be coming back. Blah.

I did have a very happy moment since I have last written. I will tell you, Rite Aid is my nemesis. I can’t handle the lighting whatsoever or navigating thru the store. Since I have gotten sick, either Dave or my friend Amelia have been my Rite Aid shoppers for me. This time, I didn’t have anyone to help me, so I decided to try to tackle it on my own. I needed to get some last minute costume things for the Halloween party we go to every year, and pick up tampons. My last “visitor” was in February and made a comeback. It was kind of a “what the hell is happening to me?!” moment. Oh yeah. Wait. This is normal. Haha. I didn’t miss it, that’s for sure.

I was convinced to at least try to go in there and do my shopping. I wore my sunglasses in the store which I kind of get embarrassed about and got just about everything I needed! Success!

I got a few looks, I ticked and swayed in line, and stuttered to the cashier. I felt so lightheaded by the time I left that I had to in my car for awhile. I was shaking and couldn’t feel my legs before going home. I was completely toast when I got home, but I did it!!!

Even though there is a lot of bad going on, I know that there is progress happening. I was so psyched that I could do this on my own, even if my body hated me. I wouldn’t be able to do that even a few months ago. I wouldn’t consider it blue skies necessarily but to be able to do something certainly made me feel a lot more independent. A lesson for all, don’t ever give up. As hard as things may get, things will get better. Little by little. Have hope.

The day before the Halloween party that Dave and I go to every year, I ended up leaving work as soon as humanly possible. It was one of those days I had to skip any sort of errands and go right home.  My body was jerking on the couch, I was freezing, my vision was completely blurred, foggy, and I couldn’t stop going to the bathroom. TMI. Whatever, Get over it.

I know I wasn’t having any sort of seizure with my jerking. My neurologist has told me that the proper term for this is myoclonus. While I was having this fun Lymie afternoon, I kept tearing up and doing my best not to cry. Still having moments like this is, losing control of your body, is so discouraging, especially when you have something you are really looking forward to coming up.

On Saturday, there was some alignment of the stars, or however that saying goes. I did alright at the party. Much much better than I was anticipating. It was really what I needed after just one day before. Maybe it was the few hours of sleep beforehand.  I tried to stay out of the room with the DJ, as it was pretty loud. Overstimulation is a pretty big fear of mine, as well as lighting as you know. I sat a lot, or made sure there was something I could lean on so I didn’t have to try to stand upright. I had a few odd aura moments that I have before shit hits the fan. Luckily, they went away pretty quickly and nothing ended up happening. This can get really messy sometimes.

I was so glad to be out and see some familiar faces and catch up. I really miss going out. Visibly, other than having to lean and walked a bit like I sharted…. you probably wouldn’t know I was sick at all. I got a lot of compliments, and people did notice an improvement from the past two years. Just a year ago, I remember a friend helping me get up to get our award for best couple. By the way, we won best couple again.. 8th year running. 🙂 And I was able to walk up there with Dave on my own. 🙂

I have to wonder though, when I have little bits of better moments, more invisible moments, about the impressions of others about one facing an “invisible illness”. Maybe I look like a big ol’ faker in other’s eyes. I can’t care too much about this kind of stuff though. If you search my post titled, “Invisible Illness”, you can read more about my thoughts and experiences of being on both sides of the spectrum.

At least yesterday I didn’t have to work. It is one of those things as many of you know, if you try to go out and do something you pay dearly for it. I think I set off my heart device upon waking in the morning. It felt like it was racing a zillion miles per hour, and the box for it lit up. Hmm.. the regular cardiologist really hasn’t been in any communication.. okay any communication with me once I gave them my drug test results. LOL. Oh well. That’s okay. I am really happy with the electrophysologist. It will be music to my ears when they think it is time to have my heart device removed.

It is kind of like a “stuck” chapter in this journey that I would like to leave behind me. We know what the issue is and I finally got a diagnosis (POTS). I can feel the implant in my chest, it is about the size of a small piece of gum, but sometimes If I am laying on my stomach it hurts and is uncomfortable.

Dave and I went out to breakfast, I did one aisle of the grocery store while he did the rest and I could go out to the car and wait, managed to do some laundry folding and clean up the kitchen a bit. We went to our friend’s house to watch the football game, and I fell asleep. I wasn’t much company. Oh well. As soon as I got home I fell right back asleep.

Today was a really spacey day. There really wasn’t a lot I had to do in the office, yet it took twice as long for everything to get done. I found myself Facebook stalking, looking at trading my car in and downgrading it, just to save $50 a month.. to help pay for my health insurance cost increase to start in the new year. I am not sure why, but I have been really nauseated. I haven’t been on antibiotics for awhile now. No idea.

I had to go to the bank to deposit Dave’s paycheck, and was going to be naughty and swing in to the bakery next door, to get a gluten free brownie and a cupcake for Dave and had one of those Lyme rage moments inside me, (don’t mess with my food lol, only kiddin’), a huge pet peeve of mine is people in line trying to make friends with the cashier. Chit chatting about their damn life story, when there is other people in line waiting. At least I didn’t yell at the lady or I would have looked like a fatty.. needing my brownie ASAP.

I could feel myself getting hot, sweating profusely, and dizzy. And so I left. Sorry, you lost a sale. And I am brownie-less. That would be what I would call a lose-lose. I really wanted that brownie. I just know when to say when.

I have been pondering a lot about starting treatment again this week. I could wait until next week, but I think I need to go back on it. My body is telling me I need to be. I might have to go back on my older protocol.. I feel like it is cheating a bit, but I was after all told to do one or two more rounds of that particular protocol before starting my current one. Not by choice, I am trying to get by with the costs of these medications before my phone conference. Decisions decisions. Or an improvised protocol. I am going to have to do it. Although I have had some really good moments, I know overall I am crashing. I am just really good at hiding it now.

So, although I have had some hard times during this break, I have definitely had some great ones. Even something like going to Rite Aid is a huge accomplishment for me, and being able to go to the annual Halloween party and do well at least give me something to hold onto. I am going to go the optimistic route that going back on treatment will be really beneficial to me. I just might not be in the right place to be able to have a longer break…yet.

Happy Monday! Oh yeah.. almost forgot! Ronald McDonald and the Hamburglar. 😉
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4 thoughts on “October Part 3 – It’s Time

  1. Oh Kim, it has been so hard on so many. Seems like the never ending roller coaster. Keep fighting honey, we will get there. Remember, you are truly an inspiration to many.

    Take care honey,
    Ellen xo

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