Telling My Chronic Illness Story

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It’s been a while since we joined the A Chronic Voice Linky with these prompt words: telling, speaking, worrying, fantasizing, and progressing. I enjoy the challenge of using each word in my chronic illness journey. This year has had its ups and downs, but mostly downs.

Telling

(or summarizing my health this year)

2023 has had more doctor’s appointments than any other year. Visits to the cardiologist and eye doctor were good. There were no changes so I knew that I could continue taking Plaquenil. When I saw the Rheumatologist I had many questions written down. When I asked her about my tremor in the left hand, she contacted neurology.

My first visit there was with a general neurologist. When I explained my tremor and the jerks I was having, he did a number of tests. He had me touch my nose and those types of tests. I had to walk as he watched. I did a few balance tests and failed miserably. My next step was for him to send me to a different neurologist. This doctor specializes in motion disorders.

He ordered an MRI of my brain. As he considers my diagnosis, he had to rule anything that might be causing the Tremors and Myoclonus. I’ll be seeing him in the fall so that he can decide what treatment I need. He felt like it was physiological movements or Parkinson’s signs. I’m thankful that he didn’t jump to a conclusion before he was sure.

My MRI showed no sign of stroke or tumors, which was wonderful! There were signs of slowing flow to the right ventricle, but a MRI with contrast would be needed to clarify. This MRI showed what the other one showed, an obstruction in the right maxillary. Polyps run in my family, so this may need to be investigated with my allergy doctor.

speaking

Progressing

My health is certainly showing progress, but not in the direction I would like. My skin is so much worse than last year. My fingers split open and bleed and take forever to heal. Once one finger starts to heal, another splits open. This is so very painful! Recently, I woke up covered in a red, itchy rash. Nothing seemed to help and the rash was getting worse and covered almost all my body. The dermatologist told me to come right in.

She biopsied my lower back lesions, which have been there for many years. She also biopsied my arm skin where one of the big, round sores were. She wanted to know exactly what we had found, in order to treat it properly. The biopsy showed psoriasis, so I will be glad to try a medication.

Worrying

I was definitely worrying about the skin biopsies. I was already worrying about the brain and possible Parkinson’s, but now my skin was being attacked. My doctor has ordered Otezla for me. The retail price ia 4600 per month. The pain, burning, and itching have made it hard for me to think about anything. Living on benadryl every 4 hours is awful and I can tell that it doesn’t work as well.

Speaking

Speaking has never been my favorite. It was easier for me to let my music speak for me. I am no longer able to play, but with all my brain fog, I feel my speaking skills have only gotten worse.

Fantasizing

Since I have become so sick I have so much more time to think. Having a fantasy or two can get a person positive thoughts for a change. The last couple of months have brought me tons of pain and plenty of time to think about how fun it would be to be healthy. l love thinking about how I long to be healthy. It’s a feeling like I’m letting everybody down.

Even when I know it’s better to live in the moment, there are days when fantasizing about good health is all I can do.

2 thoughts on “Telling My Chronic Illness Story”

  1. Thank you for joining us again this month, Lisa, I appreciate you sharing how you’ve been of late. I’m sorry to hear about all the painful wounds. I just had some infected wounds on the sole of my foot too so I hear you. Please take good care my friend. Sending lots of good thoughts.

    1. It’s tough when our bodies can’t fight back to make wounds heal quickly. The foot sounds like an awful place to have a wound. I hope that June will be a healthier time.

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