ST. THOMAS - Debbi Haskins of St. Thomas believes everyone deals with a monster of some sort in their life and for her, it's reflex symptomatic dystrophy (RSD).
Dealing with the disease has motivated her to write a book, My Monster & Me, for which Haskins did her own cover design.
The title comes from her own vision of RSD.
“It's the lighter side of my disease. I have a disease called reflex symptomatic dystrophy. It's a nerve disease, the nerves are constantly firing. There's no shutoff. It feels like the blood has been drained out of your veins and they're filled with lighter fluid and someone lit it. Constant pain.
“I never really thought of it (her condition) as RSD. It's something that scares me. It's something I can't put a face to and it's a very scary thing. So the closest I could come to it is that's my monster. It controls me, it tells me when I can function, when I can't. Everybody's afraid of a monster, right? So, that's my monster.”
Add to that a second condition, allodynia, that extends from her knuckle to mid- shoulder.
A procedure to repair an injury received at work - a broken thumb - did not heal properly and now she experiences pain from even the slightest sensation like wind or air movement.
For that reason, most of her hand and arm up to the shoulder is covered with a sock or stocking-like material.
“I can't have anything touch that area - air, water, fabric. It's severe sensitivity.”
She will be signing her book on Saturday, from 1 to 3 p.m., at The Beanery.
“The book itself is on my workplace injury and the widespread nature of my disease, it's gone to full body from the hand. It's just a lighter look at my disease, I try not to dwell on the bad. It's the humorous part of what I go through.”
Haskins said she spent two years writing her book.
“It was basically just a hobby, just to get my feelings out. I passed it along to somebody to see what they thought of it, next thing I know, they suggested getting it published.”
Publish America, a business Haskins says is keen on helping to promote different causes, published her book.
“This will be my first book signing, it helps get the knowledge of RSD out. It makes a good book for a doctor's office.”
She attends a pain clinic every six weeks for treatment at St. Joseph's Hospital in London.
At her last doctor's appointment, Haskins found out she has now contacted fibromyalgia,
“I also have a heart issue now because of all the stress and nerve problems,” she said. “If I get a bump or bruise, the RSD can hit there.”
If future treatment required her to have a heart stent, the RSD could hit the heart, she said.
“If you get RSD on the inside, on your internal organs, they give you days or weeks, not years (to live). It's not a good thing, There's no cure for RSD. There's very little awareness of RSD.
“That's another reason why I did the book, for awareness.”
To cope with her situation, she and her husband, Dave, had to move into a one-floor home. To get around, she walks with a cane, on bad days.
“I do have a transportation chair on days I will not have to walk.”
Her home has been refitted with special grab handles and other accessibility features with the help of the Workplace Safety and Insurance Board.
“Some days she's good, some days, she's not,” said husband Dave. “Some days she can function, some days she can't.”
Haskins describes a specialist who treats her at the St. Joseph's Hospital pain centre, Dr. Patricia Morley-Forster, as her godsend.
“She used to be a surgeon and she liked saving people but that's where it ended. She wanted to follow up with her pain care. So now she's totally into RSD pain care. She is amazing. She's absolutely remarkable. I was fortunate to be sent to her, she has a huge waiting list.”