Within the first few days, I wasn’t use to the whole not having to deal with a picc line thing. I almost felt like I was doing something wrong as I had a regimen impacted in my mind. It took some getting use to not having tubing or baby leg warmers on my arms anymore. But boy, it was nice to take a shower like a normal person, no more dixie cup baths! Society was probably happy of this too as I was kind of gross.
Dave had brought me out to our favorite local bar where we get our weekly 4-5 o clock wings, . It was perfect for me as everyone knows me there so it’s just a bunch of friends. I don’t have to be worried about my tics and get to enjoy a brief moment of normalcy and be the social butterfly that I am, or once was. That first time I was there after getting my line out, I had begun to have some sort of seizure activity and was completely zonked out. Dave had to pretty much carry me to the car and I spent the evening laying on the couch until I could finally transfer myself to the bed to sleep.
I also had a few of these episodes at the local bank. At least everyone there knows that I am sick so they know I am just having a bad day.
I noticed some things change very quickly. One positive, was the water temperature hyperthermia seemed to go away. Must have been a Rocephin thing. The most negative thing was my body seemed to hate me. You name it; it hurt. My fingers and arms hurt terribly and my feet felt like I had been on them for days in the worst pair of shoes you could think of. My soles of my feet were so sore, my toes, and my knees were screaming in pain. The back of my foot, which is connective tissue caused me a lot of discomfort as well. My back, neck, and even my eyeballs just plain hurt, and I continued with my sleep issues.
It was impossible to fall asleep. It seemed like no matter what I would do to try to fall asleep, I just wouldn’t get there. By body ached, I would get chest pains and it felt as if my heart was fluttering and my mind just wouldn’t want to shut down. Every single thing that has happened to me in my past, decisions I have made, anything you could think of came back to me and I couldn’t make it go away.
But once I was asleep, I was dead to the world, impossible to get up. I wish that this sleep felt restorative, but as soon as I would get up mid-morning it felt as if I had never gone to bed in the first place and my mind was left in a high, foggy state for the rest of the day with an extreme lack of energy.
Being on my feet for long was still an issue for me, as I quickly get tunnel vision and dizzy and lose my breath. I noticed the numbness in my feet would come and go, but seemed to generally be worse under stressful conditions.
My sexy hot flashes came back in full force and I developed a disgusting rash on my foot. Stupid me, I forgot to take a picture to show Dr. S, but talked to a fellow Lymie that has been through it all already in DC, and she said she was sure it was an ACA rash, commonly known as a herxheimer rash. I am not sure, but after a few days, it seemed to go away on its own.
My Tourettsy outbursts seemed to get much worse without taking any antibiotics as well. I have learned after having this happen to me for so long, I have begun to just tell people I have Tourette’s.
I get funny looks continuously, or they ask what’s wrong. It is so much easier to just tell people I have Tourette’s instead of having the same Lyme conversation with everyone that usually goes as follows… I have a verbal/physical tic, “oh everything ok?”, ” Yeah I’m fine; I have Lyme.” “LYME’S DISEASE??! That’s like what…from a tick, right?” Me: “Yeah” “Did you get a rash, do your knees hurt?, How do you have the tics from Lyme?” This is about when my head is about to explode. Unfortunately for me, I got the fun neuro symptoms. But if I remember correctly, if I continue on with my tics for a full year (which will be in October) then I get to really say I have Tourette’s. Yay for me!