May Part 4 – The Instant Wave

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The end of the week is the period of treatment I completely loath. I have a mini bomb day, which is some of my antibiotics, then the atomic bomb, I take everything. One being my favorite, Flagyl. I am secretive, you will never know my full protocols, as we are all different, have our own specific needs, have varying symptoms, so it is best to get a protocol that is right for you from your LLMD or LLND.

The nausea has been killing me this week. I have been sitting with a bag next to me, trying to get comfortable so it doesn’t feel like my throat is getting any pressure to explode everything I ate for the day. Burping. Watery mouth. That feeling when you have had way too much tequila, and need to keep one foot off the bed in order to stay balanced.

I ended up being a rule breaker this week. I do a regimen of Lactoferrin and Xylitol to break up the biofilm form of Lyme, and I must say the thought of Xylitol makes me want to gag. After I took all my pills and my favorite yellow chalk (you all that have been in my shoes know exactly what I am talking about), I stared at the Xylitol. I then made the decision it just wasn’t happening. Nope. I was weighing the pros and cons, and knowing I could hurl at any given moment, I would rather try to keep in my ridiculously expensive, not covered my insurance medications. I hated to do it, and felt guilty, but sometimes you just need to do what is right for you. You should know your own body. And I just knew it was a bad idea. Biofilms, I will break you open and kill you another day. πŸ˜‰

This was all BEFORE my mini and full on bomb day.
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Now I guess I will teach a lesson to you all. Many of you that follow me know that how you can feel can change in an instant. You can see a vibrant, happy girl on the outside, even though I am terribly sick on the inside. I am just a master of hiding it.Β 

Here I am, joking around on Facebook about a little midnight shopping spree that I did without any knowledge of purchasing anything, and I got a package with some flower printed jogger pants. Really Kimmiecakes? You couldn’t have picked out anything better? Really?

I put them on, and not going to lie, they felt like soft, silky clouds of amazingness on my legs. So I wore the ugly joggers. Note: My ugly weird rhinestoned sweatshirt was also a random purchase online with zero recollection of buying it.

For the life of me that morning, I could not swallow my Flagyl. My body was telling me “NooOooO, don’t do it!”. To make it worse, the nasty pill was dissolving in my mouth struggling to get it down, giving me more and more of the metallic taste. I ended up doing the trick that one generally does with a dog, rubbing my throat. It worked, I finally got it down. Woof woof!

Work was tough. All of a sudden, my heart felt like it was racing, and I blacked out. Luckily I was close to a couch, and I came back to, all curled up in a ball. All I could see was green.

A big sheet of green. No shapes, no figures. Just green. Not even a lime shade of green for Lyme for Lyme, it was more of a shamrock shade of green. You best believe I hit my heart monitor button.

There were a lot of things I wanted to do once I was done work and was slightly put more together, but I had to head straight home. No stuff to make a salad, no bank, no pharmacy. No detox juice at the cafe.
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This picture was taken as soon as I got home. As you can see, my hair is a sweaty mess and no longer looked clean and washed like it was just a few hours before. Thanks Babesia. My coloring is off. I have big circles under my eyes, and of course my droopy right eye. I would be hard pressed to be able to get a smile without it being completely sideways.

So.. I guess my point is, you may see the “good”. You may see that I look like I am okay on the outside. But you also might have no idea how easily there can be a wave that can come over you, from “dealing” with this, to completely falling apart. Most people with chronic illness are also masters at this. Staying completely strong and put together until you open that door to your home. No one sees the bad. Therefore, others assume you are fine. After all, “You look great!”.

Obviously, the whole blacking out thing is an exception of this for the day, but just know that because one looks normal on the outside, does not mean that they are feeling great. And know that with chronic illness, everything can change in an instant.

Keep this in mind with plans, events, and other things that it is hard for one to be able to commit to anything. It is beyond our control.

As soon as I got home I plopped myself onto the couch, put on my winter jacket, and there I spent nearly all the rest of the evening and night, except for quick kitchen, taking medications, and bathroom breaks. I had high hopes that Marinol would help subside the nausea, but it didn’t even give me a placebo effect. Boo.

Oh yeah.. Flagyl can give you LOTS of bathroom breaks. It at least reminds me that my legs still work if I need to be in sprint mode. Hahahaha. TMI? Maybe. But I share it all. Good, bad, and gross.

Today is my big bomb day. It has been the complete opposite of fun. Now you get to hear my sad tune on my tiny violin. πŸ™‚

I was pretty good at getting things situated in the morning, and took my pills like a champ. I know I have a time frame until the timer goes off and all hell breaks loose, so I spent it grabbing a coffee, a detox smoothie, and headed off to the post office for work and headed to the office.

I at least made it as far as crediting the checks into the computer and putting together the deposit slips for the bank, printed out some work emails for the bossman, but that was about it for the day. I want to smack myself for these types of days, as I feel completely useless. I am just a body in the office, basically.

That timer finally went off, the one I had mentioned that I only have an allotted time until the “bomb” goes off, hence, bomb day.

I was at the parking lot where all my stores I need to go into, and couldn’t get up or out of the car. I was loopy and shaking like crazy. I sat and sat, waiting for it to pass. I finally got up enough energy to go to the pharmacy to ask for two more refills, and pick up one I had waiting for me, but then had to tell them I had to wait until tomorrow, when I could go to the bank and deposit money… which was right next to the pharmacy but it just wasn’t going to happen.

When this was all happening while I was speaking to the pharmacist, I was bobbing back and forth and “bahhing” at her like a sheep. Super. Then when I told her I would come back tomorrow, I walked away like I was drunk, tittering around and like I shit myself.

In retrospect, I didn’t have to go to the pharmacy. I could have called in my scripts. I could have avoided the struggle. Lyme brain. I guess I like to make things more difficult. πŸ˜‰

At least I am home now. I have been working on this blog for several hours now. Yup. Several hours. I am sorry if it is a mess. This is what you get. Real time writing. No fancy editor. Just a girl with Lyme telling her story. I have been so spaced out that I have the TV Guide on and listening to its soothing music. Haha. This is nothing new, but it would be nice if I could just look at it for a minute and pick a channel. Any channel. Soothing music it is. Right now I would have to say though, the music is rather jazzy.

My mind has been playing games with me all day. I have had this intense feeling of paranoia that Dave absolutely hates me. Last night, I was given a pasta salad from my parents and it had green olives in it and told him that was dinner, and he put up a little stink because he hates olives. I had a tiny bit of gluten free stuff, and kind of well.. wouldn’t share because it was something better for me to eat. I have been holding onto that dinner moment, being irrational, that Dave hates me now, and can’t stand me. I gave him a short text today with the dinner menu, pizza and salad, and no olives, and told him I love him. He hasn’t texted me back.

I know he is at work. He can’t go and text me. I know he loves me. He is a saint (except when it comes to olives), has been a caregiver, my everything. But my mind keeps getting completely irrational that he no longer loves me. I will be all alone. Irrational. I know. What the hell is my mind doing to me? No love over olives in a pasta salad? Kimmiecakes, you are being ridiculous. I can’t help it though. Mind games are terrible.

Tonight I will take it easy, and watch my season finales. I don’t know what I am going to do with myself on Thursday nights anymore! I am afraid of what is to come in the following days. This hasn’t been a picnic, and I get to add more to my protocol. All I need to do is stay positive, and hope that this all will work and worth the struggle, and I will be one step further toward remission.

8 thoughts on “May Part 4 – The Instant Wave

  1. I love your honesty and humor! You’re an inspiration even though I’m just a caretaker for my daughter! She has the same doctor and will be starting IV protocol in about 6 weeks. She’s recovering from gall bladder removal. Yuck! I’m praying for you daily!

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