Saturday, February 25, 2023

Shingles journey in pictures

So here is the timeline:

November 2018 my shoulder blade burned and itched. My doctor sent me to get an allergy test,  but I was negative for everything.

December 2018 the burning sensation moved to the base of my neck. No rash or anything, but just a headaches that would not go away. 

January 2019 the bumps started out small so I thought I had broken out in acne or I had an allergic reaction, but as the month went on the small bumps just spread. My eyes were getting sensitive to light and it felt like bugs were moving under my skin.

February 2019 I woke to what felt like a dagger being plunged in my eye. I was diagnosed with shingles and sent immediately to the eye doctor who had to numb my eye to even hold my eyelid open to look at the back of my eye.

Happy Valentine's Day you have shingles. Start of the long road to fight for my eyesight and the beginning of terminal nerve damage.

Hard to describe the pain and itch. I once explained that is was like having fire ants trying to bury their way out of your body while bees are stinging the skin from the outside. I couldn't open my eye and when light even came in contact with my closed eye I was sure a fire poker was being shoved into my retina. 

---here is the thing the doctor couldn't prescribe me narcotics due to all the abuses so I was given Ibuprofen that didn't touch the pain. The antivirals made me feel so sick. All you want to do is sleep but the pain is searing and as the skin dried out the incessant itching began. 

March 2019 I was plunged into darkness. It was my cave days. Even the TV light hurt so I didn't watch, but just listened. All you can do is lay in the dark in hopes the throbbing would cease.

--I had to go to the eye doctor everyday for 4 weeks-the drive was horrendous as any light even with my eyelids covered, double towels around my face, eye patch, but nothing worked. I only had a reprieve when I got to the doctor's office and they had eye numbing drops.

***side note they knew I was coming and they shut off the lights in the office. Rushed me to the back where the hall lights were off to a very back dark office. He wore a little light on his forehead. Excellent care and he sure had a poker face all those weeks. 

April 2019 Shingles virus died off, office visits moved to once a week, and the journey to healing began so I figured it had to be better soon.

May 2019 Office visits moved to twice a month The itch was so bad I had scratched a bald spot on the top of my head. I had cut my hair so short because anything touched that spot would start a scratching frenzy. My should itched so I had cut grooves in my back that are now scars that will not tan. I can tell I took out chunks of skin at the height of this very evil neuropathy. 

June 2019 Office visits moved to every 3 months. I finally decided to make myself move. Those anti-vials and non-movement for so long I could barely walk around my dining table. The sunlight would make my eye water so I still couldn't drive myself anywhere. I pushed myself to go outside in sunlight as it was time to regain strength back in my eye and body. 

Summer 2019 I walked around the block. Each day I walked just a little further until by the end of the summer I was back to walking 2 miles and my eye stopped watering. Full sunlight didn't seem so bad. 

By January 2020 I finally hit 10,000 steps. It was such an accomplishment as it took me a year to gain the strength I had before shingles hit. I pushed to jog to get my cardio back-my lungs wanted to burst even with a little speed. 

By February 2020 I had to work on the muscles of my face-my left side drooped so each morning even though that nerve along the left side of my face burned and itched I kept up with exercising. It is like you have to retrain your nerve to not fire or pulse in response to touch or movement. It just an overly strange virus that leaves so many with disabilities inside the body so when the skin heals all seems good on the outside but there is a daily battle going on inside.

2020-2021 I just change my whole lifestyle. Diet, vitamins & minerals, exercise, saying no when I am tired, not letting everything bother me, get daily sunlight (nothing more amazing then feeling the warmth of the sun on my skin and being able to open my eyes in daylight), the pain subsided, but the nerve damage is one I will have to live with the rest of my life.

to date:

-I get blood work done every 6 months to watch all my levels, blood count, vitamins, and organ check (which we have been watching my kidney for the past year and now I will not be deterred to work to heal them). Fingers crossed for my May bloodwork to show improvement. 

-My forehead still has numbness until I pluck my eyebrows and then the nerve is very very angry with me. I still get what feels like ice-cream headaches that I just breathe through. I feel the nerve move from the top of my head, down my face, into my left shoulder blade, to my hip, down my left leg. Then it moves back up. It almost has it own personality. 

*** Once shingles hits the virus is not rid from your body. It travels up and down your spine. Which is why people say they have had an outbreak more than once. Doctors don't know everything, so take care if you ever had chicken pox. 

Me December 2022
Long journey, tough fight, but it was worth it