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Purple painted ponies that poop butterflies.
They exist. In my world, at least. Because my life isn’t anywhere close to “normal”. Now, before you go all Mr. T. on me, I recognize that any state of being “normal” is highly subjective. I know MANY people who are a little less on the “normal” and a little more on the “askew”.
The truth is, I really can’t remember what it was like to even FEEL “normal”….my teenage years, I think…but I’m a little fuzzy on that.
Let me put it this way: I cannot remember the last time/day/week/month/year in which I did not have pain.
Every. Single. Day.
Did this just come out because of my diagnosis of SLE in the fall of 2010? Hell no!! What DID come out with this diagnosis, however, was merely the confirmation that I wasn’t losing my goddamned mind!
Can you imagine….Every. Single. Day. Back, neck, shoulders, ankles, knees, wrists, hips. Pick one. Pick two. Pick any combination.
But how excusable was any of it!?!? I feel cheated, almost, that the chaos of my reality was, in fact, masking the many flares….the many days of inflammation…that may have given doctors a better indication of my condition so many years ago.
“My hips hurt.” ~~~You hop baby gates all day. Get one with the swinging door. Take a Tylenol.
“My wrists hurt.” ~~~You carry twin babies. You carry daycare children. Stop. Take a Motrin.
“My ankles hurt.” ~~~You need better shoes because you’re on your feet all day long. Take an Aleve.
“My back hurts.” ~~~You are carrying twins. You poor thing. Don’t take anything.
“My shoulders hurt.” ~~~You need to take some Tylenol and stop friggin’ complaining…
So, I often wonder….What would I do if I could feel “normal” again? What does a day in the life of a normal person FEEL like??? What a bizarre concept! A day with NO pain?? It’s exciting and frightening all at the same time…
See, if I say I’m having a “good day”….you automatically assume that means I have no pain. I NEVER have “no pain”. What it means is that I am able to push through any pain with relative ease. The pain has subsided to merely a dull reminder of it’s presence, but it’s tendrils still have their roots deep within my system…
I currently take Amitriptyline (Elavil) for chronic pain relief. I started on a 10 mg dosage, but found that it did not last through the night. Dosage increased to 20 mg. Now we’re getting somewhere. I take it at bedtime in order to avoid the “drowzies” during the day. Truth be told, it knocks me on my arse. I still take Tylenol or Motrin as required. And, like any other pain management treatment for those with lupus, it is a trial and error system. What works for one doesn’t always work for another. I really wish I could remember to take it more religiously, though, as by the time my pain shoots through it’s threshold, it’s already past the next dosage time. Damn. Must work on that.
So, what WOULD I do? Honestly? I wouldn’t KNOW what to do. Kind of like when there’s not a single child in my house. The quiet….it’s weird….it’s bizarre…it borders on the uncomfortable.
*I* know what I’d do…..I’d go riding on purple painted ponies :o)

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