Entry #8: New Normal

October 3. 2018 3:00 AM

February 2018 and I was back in Puerto Vallarta. The first two weeks I stayed at home recuperating from being away. I had just spent 54 days away, in hospital everyday. I wanted to get out and do everything it I couldn’t. My body wouldn’t let me.

I started to have seizures while in Canada. They continued. Gary has never experienced one before and it was frightening. I had three back to back. Luckily when we talked about my health we talked about the now 27 symptoms I had with this being the newest. How to deal with me when having one.

It was traumatic for both of us. I don’t remember anything about them other than being in a lot of pain and being bewildered and frightened when I come out. Unfortunately these have continued and I have had 16 since January. No medication helps.

We got through spring albeit we had our ups and downs. Symptoms would come and go amd by the most part I was doing really good. A delayed reaction from the Canadian treatment? Perhaps.

I flew back at the beginning of May 2018 for a follow up amd being prepared that I would undergo more treatment. We were elated that I was in remission. I returned a week later. Because I was feeling so good I and I only had a duffle for luggage I said I would take the bus from the airport. One bus 15 minutes.

I got confused. I got on the wrong bus. It turned where it wasn’t supposed to. I was lost. I didn’t know how to get home. I panicked and got off the bus. I started crying. I had no more pesos. I hadn’t charged my phone. I was lost for three hours.

As summer progressed life was near normal. I still tired out quickly if I did any physical activity and when the rash appeared it was not as severe. Before it burned and itched and there was no cream or medication that would relieve. It was the toxins from inside coming out and that itch and pain was inside. But these latest instances were tolerable.

My confusion progressed with time as did my seizures. Most were over a minute and some approached 3 minutes. One day I was going to meet my husband downtown and got on a bus at 1 pm from our house. That was Thursday. I never made it. I had a seizure on the bus and the driver and a patron sent me to the hospital in a cab. I don’t remember much until Friday morning when I awoke in hospital. I was given phenobarbital for seizures and it knocked me out again until around 11 am. I called Gary crying and frightened. God only knows the terror he was going through for almost 24 hrs. I was not on medication for seizures as I was told they are ineffective in my case.

We got a dog tag made up with my name, Gary’s phone number, medication I’m on amd illness written in Spanish. That was if I got lost again I could be identified by authorities. It happened again.

I went to the corner hardware store. Had a seizure on the way there as I remember getting up off the sidewalk. No one helped. I was lost. I ended up by Walmart by marina Vallarta and asked a police officer for help. He went through my things, searched me and stole my charging block, cables and extra battery out of my murse. I remember picking the rest of my belongings off the sidewalk. He left me there crying. My phone rang it was my husband looking for me again.

I started getting sick again mid August 2018. I mean really sick. I was back to being in bed all day. Diarrhea. Severe pain. The rash was back but brutal. This picture was taken mid August.

My torso was covered. My legs. Inside my ears. We hoped I was having just a Herx reaction again. I was better for a few days and got back out to see friends. People thought all was good and had no idea.

I am officially out of remission. Last week I again was crying in the shower from uncontrollable dysentery.

We looked into stem cell therapy. Extensive research. It has been suggested before as a benefit but I was in remission and besides it’s not a cure.

I vowed that after my treatment in Canada I would accept my disease. We would deal with it as I had flair ups knowing that they will happen again. It’s Warren’s new normal. I couldn’t get my hopes up again only to fail and be devastated. That what I told myself.

Here we are again. The thought of a treatment to help when you are weak and vulnerable is too strong a pull. I know there is no cure but I can’t live surrounded by the four walls that are our bedroom. I just can’t.

What scared the shit out of me is the failure. It’s happened five times in the past.

There is no cure for chronic Lyme disease Warren”

Warren Bennett -Chronic Lyme Disease