Usually I post about the kiddo and life with autism. Today I’m going to write about me me ME ๐.
I have fibromyalgia. I was diagnosed with a bunch of other things by surgeons that operated to fix the problems before I finally wound up with a rheumatologist that took my ongoing pain seriously and gave it a name. He took my pain so seriously he gave me much stronger pain killers than the previous surgeons had. Suddenly instead of a couple Vicodin a day I was taking oxycontin.
Oxycontin works great for pain but my body became acclimated to it quickly. Before long I was taking 640mg a day. Yep, that 8 x 80mg per day. And that didn’t even count the sleeping pills I still took every night.
Then the work comp insurance stopped covering this doctor & I had to find a new one. I was sent to a pain doc that on first consult told me I didn’t have a pain problem. My problem was addiction. I felt pain because I was addicted to the oxycontin. He put me on a fentanyl patch that was about a third of the strength of what I was used to and referred me to an addiction specialist.
The patch made my skin break out & wouldn’t stay on. I was in a LOT of pain and suffering from mild withdrawal from the drastic reduction in my meds. I tried to talk to this new pain doc about it but of course that made me sound like a drug seeking addict.
I finally was able to see the addiction specialist because I camped in his waiting room until he saw me. He told me that I was DEPENDANT but NOT an addict. Duh… He couldn’t do anything except give me Suboxone since he was just a consulting doc. Ugh…sigh…
I took the Suboxone so I wouldn’t have to deal with withdrawal while I was trying to find another new doc. I was NOT going back to the “you’re an addict” guy. By the way, the oxycontin I was taking….it was the equivalent of a $600.00 day heroin habit. No wonder I felt awful.
So, I finally find a new doc and he’s cautious at first because I’d been labeled as an addict. Even though I was also cleared of that label, caution. We built a rapport over several visits, over several months and he was willing to break out the Rx pad for some relief for me.
Again, I was acclimating quickly and meds were losing their effectiveness. Finally he suggest an Intrathecal Pain Pump. Time for some serious googling!
An Intrathecal Pain Pump is a device that is surgically implanted that delivers meds into the fluid surrounding the spinal cord. That’s a very very basic description. Anyway, I liked the idea of getting rid if the ups & downs of oral meds. They never lasted the allotted time for me. Also I thought my tummy &liver might appreciate less pills.
Of course the work comp insurance had to delay and delay approval. I had to have a FULL psychological evaluation before they would approve the surgery. I’m still trying to figure out the reasoning for that.
Finally, surgery. Now I’m a cyborg. Thus named by my daughter since I’m part machine. I go to the doc once a month and the use a needle to fill the reservoir in my pump with fentanyl, marcaine & clonadine. The rate of flow and extra boosts at certain times can be programmed into the pump via a magnet with their gadget. I love this pump!
I no longer watch the clock to see when I can take another pill. I no longer worry about going into painful withdrawal if there is a problem with getting an Rx filled. It really has made my life so much better.
My pain is not cured or gone. I still take morphine pills for flare ups and I still take sleeping pills but I don’t obsess about needing, getting, having & taking those pills.
I am a VERY happy cyborg!
Wonderful! I am so glad they found something that works well for you and helps control some of the pain. What an awful road though to get there – Ugh! But, I am so happy for your current situation ( and that you are a happy cyborg :-))
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It was indeed an awful road. I didn’t even go into most if it. It was a 15 year trudge up a slippery glass hill that left me 100% disabled. It did teach me patience, patience, patience! That is a very handy thing to have when dealing with The King๐
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