Note: I am not a medical professional. The contents of this blog are my opinions and experiences. Always consult your doctor before making any health decisions, and always educate yourself about your conditions and their treatments.
Dr. Rob’s post A Letter to Patients With Chronic Disease made quite a stir since it was posted in mid-July. People love it, people hate it, and personally I can’t believe I’m watching classic derailing techniques like the tone argument and victim blaming play out in this space. When I read the Letter there were parts I liked and parts I disliked. (Dare I say, parts that offended me?)
I envy those people who won’t take medicine. I envy that they don’t have to. Today I didn’t want to take ibuprofen and lie down. I wanted to function. I wanted to tough it out and be “like everyone else.” You see my mistake there? There is no like everyone else, there is just like me. And I really needed to take that medication because today was baby’s first migraine with vomiting because of extreme pain.
It was only recently I was told in a very gentle voice, “You’ve gone past the time when this would have healed itself.”
Well.
I’ve had post-herpetic neuralgia (PHN) since having shingles in 2008, and it was just the end of 2009 when I started to adjust to the fact that it wasn’t an illness, something that was temporary, but was a long-term disability. That was a difficult adjustment, learning to use that word, to apply the “disabled” label to myself.
I came down with shingles in March 2008. Shingles “is a viral disease characterized by a painful skin rash with blisters in a limited area on one side of the body, often in a stripe. The initial infection with varicella zoster virus (VZV) causes the acute (short-lived) illness chickenpox, and generally occurs in children and young people. Once an episode of chickenpox has resolved, the virus is not eliminated from the body but can go on to cause shingles—an illness with very different symptoms—often many years after the initial infection.”
Lucky me, I got Post-Herpetic Neuralgia afterward. As my doctor put it my nerves are “freaking out.” “Postherpetic neuralgia is thought to be nerve damage caused by herpes zoster. The damage causes nerves in the affected dermatomic area of the skin to send abnormal electrical signals to the brain. These signals may convey excruciating pain, and may persist or recur for months or even years.”
