October 15, 2018
I had all intentions of picking up my phone all week and doing another post. I honestly couldn’t. I was happy after the first IV treatment of stem cells last Tuesday. I was told the side effects may make me tired as my body is already exerting all its energy fighting this disease, and now it needs to divert some of that to the new stem cells.
I thought I could deal with that. My rash started to reappear slowly with burning and tingling sensation all over. My back and hip joints were really painful, so when I did get up it was slow and tedious. I slept all day Wednesday. Wednesday night. Thursday afternoon. I had started to become miserable and started to feel down. Angry at myself because, again, I started not to function. Embarrassed because things we just talked about I would forget moments later. Gary got me up at 4 pm Thursday and convinced me to go for a walk to get me out of the house. I did not want to go. But maybe something different than the bedroom walls would do my mental state good.
We walked down to the beach where he surprised me with our friend Kim. He had flown down from Texas just that day so he could be here for the benefit On Sunday to help with my medical expenses. A good friend Sheila Tequila and Francie Nguyen has planned to help by holding a benefit. I was tickled pink. Kim, Gary and I visited on the beach and watched the sunset.
I had trouble walking back to our house. My legs and hips were causing a lot of pain. One would think that all this excitement would wear me out. That night insomnia hit. I could not sleep. I got out of bed at around 1 am so I wouldn’t keep Gary awake.
I tried to write an entry in this blog. I couldn’t. I wasn’t motivated. I was still fairly shaky Friday afternoon and we thought I should stay home and try to get some sleep. Gary was meeting Kim on the beach that afternoon. Halfway through the afternoon I thought I should take the bus to the lab and pick up the rest of my blood test results so I would have them to take to the Dr. on Monday. Then walk to the beach to surprise Gary and Kim. They labs weren’t ready. I remember missing the chair as I tried to sit down to put my paperwork away. I don’t know if I had a seizure but two people helped me to my chair and stayed with me a few minutes. I needed to go to the beach.
I got lost because many hours later in the dark I was having a seizure as I hit the pavement by Plaza Characol . A taxi driver stayed with me as he called the police. They managed to find out where I lived and got me home.
Saturday was spent in bed trying to sleep but I was too fidgety and in pain. My knuckles started to hurt. The lower back pain but from inside was excruciating. I was in pain all over from the seizures, from the pavement scrapes, embarrassed, frightened, and angry all in one. I cried most of the day. I didn’t sleep Saturday night either.
Sunday was going to be a big day at the fundraiser and even if I wasn’t doing well I just had to be there. We went to sheilas house at 11 am to help with some last minute things for the opening at Noon.
What an absolutely classy, professional event. I tried to be upbeat and not let anyone know what happened this week. Everyone who was here was genuinely here to help and have a good time. I didn’t want people to look in my eyes and see inside.
I will write a whole separate blog post about the event. Up to the time of arrival my depression started to consume my thoughts and energy and I kept dwelling on how awful the week had been. Again how I had frightened all those around me. This disease has taken over. The only thing I keep thinking was why am I trying to fight this again. I said I wouldn’t do it anymore. The excitement of Tuesday when I received the first treatment is gone.
Today, Monday, I had a pretreatment at the clinic for more IV nutrients for the upcoming stem cells on Wednesday, plus ozone. After talking to the Dr how I responded this last week, the stem cell treatment for this week is suspended until they can boost my energy again. I will still go Wednesday but for different treatment. No stem cells.
Deep down this made my heart sink. The worst fear again. Yet another treatment I’m failing at. Emotionally I can’t take another failure.
“There is no cure for Chronic Lyme, Warren”
Those words are resonating in my head. Today I can’t hold back the tears every time they go through my mind. Maybe it’s my hormone imbalance. Maybe it’s because I am in a lot of pain. Maybe… maybe…. grrrr.
Maybe it’s because Lyme is winning. I just can’t deal with another epic failure. Lyme is winning.
Warren Bennett – Chronic Lyme Disease