September Part 1 – Remember the Good

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 Saturday morning was my blue sky moment. I woke up feeling much better than I have in weeks. Refreshed. I took a GOOD shower, which has been a daunting task, washed my hair, and shaved. Not a half ass shave your calves and ankles and a swipe of the pits, but really shaved.

 

I then attempted to put on some makeup, and put thought into my outfit instead of just pulling the first two things I see from the dryer, so I wear the same grubby clothes over and over again.

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The final product! Yes I know I could probably qualify to be on “What Not to Wear”, but this was a huge improvement for me. I know I am still very very sick, but in that moment, YOU would never it. That was a great feeling.

 

I went to the bank to deposit Dave and my paychecks, and headed off to work even though it was my day off to try to get a project done. There was no turning around to go back to my house.

 

I remembered to take ALL of my seizure meds and supplements. I knew I would likely pay for it by the end of the day, and for the next few days, but it was all worth it.

 

As I expected, I started to fade by mid afternoon, but having moments like I just had gives me hope, and it should give you all hope that better times WILL come to you, you just need to be patient. You will also get glimpses of blue skies, even though it may seem impossible. Hold on tight, this is quite the ride.

 

After the past few weeks, having a morning that I felt a little more like “me”, with much more improvement was something I really needed. For my body, and for my spirit.

 

I rested for the rest of the afternoon, as I was half asleep, my body ached, and my fever rose to nearly 102 again. With determination, we ended up going to the restaurant I use to work it. Whenever we end up going to the restaurant, there is a quiet corner in the back, which is perfect for us, especially right now when I am having all these “neuro miss firings”, as Dr J likes to call them.

 

After dinner we stopped by the “make a wish couple’s” house to say hello, then headed right home. Dave ended up having to do some serious work on my back, as it was completely in knots. I was nearly in tears when he was working on it. My feet were tight, and I could barely move.

 

At least it was the end of the day, and the rest of the night was a very low key evening, just watching movies and getting my back and feet massaged. Dave is the best. I think he may slightly get some enjoyment out of torturing me though. J Maybe.

 

The following day, I was paying for my moment of blue skies. I was just plain out of it, but I pushed on to get some things done around the house.

 

I tried to get caught up on a lot of work in the office, as the schedule is off because of Labor Day. I started getting really agistated and could feel myself building up on the point of having a breakdown, with more and more stuff to do, and my Dad (the boss) forgets he tells me to do something, then writes a note about it on my desk, then tells me again. Maybe he has Lyme? Haha.

 

Everytime he does that I can feel my blood boil. I don’t really know why, as working in the restaurant industry for years, I can say that can be entirely more frustrating, but I could handle whatever came my way much better than I do today.

 

 

I told Dave at night that I was scared. I was scared of the beginning of my treatment on Monday. How was it going to be? I have been doing horribly, other than my one glimpse of sunshine. Am I going to completely regress? Am I going to be able to function at all? I tossed and turned all night, sweating like a pig from my Babesia night sweats, and worried about the next two weeks. I knew deep down that either way, I was going to make it, and knew I have to stay positive. Maybe feeling so ill is my body’s way of telling me this is war. I hope so, as I want to believe that this will end up being another huge step forward for me. I have taken several steps back, but maybe this round will be a leap forward. Optimistic thinking, right?

 

Without any sleep, it was time for another round. Bottoms up! I loaded up on water, as I know Omnicef likes to deplete me of all hydration and make me spend all my spare time on the toilet, and headed off to work.

 

I did really well in the morning. I usually have an hour gap before everything hits, and it didn’t happen… until mid afternoon.

 

My face was about 50 shades of grey, and Dave noticed my legs were completely yellow. Weird huh? I get bloodwork this week so I am hoping I have no return of liver issues.

 

Sometimes I feel like a science project. Technically I am, as there is no real known “cure” for chronic Lyme, so a combination of what is known through research and science that does help, trial and error, and luck is really what gets you “there”, into a remissive state. There is always some mystery with my body going on, that can even stump the doctors.

 

I laid on the couch, in a complete daze. I could not see clearly, and my body felt like it was floating on a cloud. I guess the best way to describe it was that my brain and my body were not really connected. I could feel my body moving and was aware of it, but I was not controlling what I was doing.

 

I could feel my hands raise, my thriller dance, and began to tic again AHHH. AHHH. Hand raise.

 

Cooper looked at me like I was nuts laying on the floor beside me, but Chance didn’t budge a bit. Chance knew what was going on with Mommy, as this was nothing new to him. Dave gave me a “rut roh”, and continued on watching TV. Nothing seems to phase him anymore either. LOL.

 

Although my body was doing what it wanted to without me having control, I still was able to think to myself. This sucks. This really sucks. It was almost heartbreaking, but these drugs were obviously hitting something, and hitting it HARD.

 

Dave cooked dinner for me, and after a few hours my body decided to let me have some power back. I got most of my food on my face and my shirt, as my arms and hands weren’t fully cooperative, but I was feeling much better. I had a lot more clarity. I could not stand or sit upright for very long as it made me dizzy and my legs weakened very quickly, but laying down I seemed to do alright. Silver linings.

 

Today is the day after. I kind of feel, “blah”, the best way to describe it, as I am doing some dub work around the office. Stuff that piles up on the desk that is important, but never seems to get done until last minute and you always want to slap yourself for not keeping up with it. I guess even though I am dubbing around I am still being productive. I have massage today which I am looking forward to. I am very much in need of detox, and I hope Gayle can fix my back and feet.

 

I hope everyone has a wonderful week! I will keep kicking butt. One more round! I am already a quarter way thru it! J You all kick some MCIDS too!

 

 

 

4 thoughts on “September Part 1 – Remember the Good

  1. Hang in there. I was twitching and seizing like you a little over a year ago and now I only feel blah when I change my meds or go off them all. You don’t notice the changes they are so small and imperceptible but they are there! To less “Blah” days…raise your lemon water high…cheers!

  2. Wishing you more blue sky moments and clear sailing days!!

    My daughter might soon be restarting Bart treatment. Rifampin and mino, It helped a few years back, but now she is taking another med for anxiety and wonder how the Rifampin will play along.

    Any experiences with Rifampin?

    • I haven’t taken Rifampin but I have taken it’s older brother/cousin Ributin. I tolerate it well. I don’t see there being any worry about taking anti anxiety medication with the abx? Sorry to hear about her relapse on Bart. it is really discouraging at times..

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