Wow, I have been away a long time! My last post was last year… Guess that’s what happens when you’re depressed and in pain. You just do what you have to do to get by and drop out from the world.
Good news though! I finally found the right series of doctors who referred me to the right doctors who referred me to the right surgeon who knew what it was that was slowly killing my life. YEAH!!! It is called Acute Cutaneous Nerve Entrapment Syndrome (ACNES) and in addition to being horrible and miserable and every bad adjective you can think of, it’s also rather rare – which is why it was so hard to do anything but feed narcotics to it.
I had surgery on 5/23 in Johns Hopkins, and my surgeon found that my nerve bundle was adhered to the abdominal wall and mired in scar tissue. No wonder it was so painful! My surgeon made me feel so peaceful the very first time I met him. Just a wave of hope, peace and positive emotion swept through me as soon as I shook his hand. I’m starting to feel better from the surgery – even with a 6+ inch scar in my abdomen! So far, the chronic pain hasn’t come back although I do feel kind of burning/numbness where I thought I’d only feel numbness. I think (pray) that will pass.
So, I’m starting to come out of the darkness. My despair is lifting and I’m so grateful to God for sending me in the right directions and not letting me give up.
Summer’s over and I missed it… But, there is reason to hope!
Because of pain, vertigo, trying new medications, having the Meniere’s disease flare back up and being mostly bedridden, and because I’m too dizzy to do the stairs to my office, and too unstable to get out to do photo excursions or day trips, my summer was taken.
The latest new medication is for nerve pain. Its to target the pain from the nerve trapped in my abdominal wall that’s causing all my pain. And its brutal. The side effects I mean. They are awful. But, I’m giving the medicine a few more months to get used to the side effects. The medicine is WORKING!! The pain is lessening!!! Its amazing! I’d get up and do stuff if I was sure I wouldn’t pass out or fall over from vertigo LOL
So, between all these changes, I’ve missed the entire summer. I’ve hardly taken a single picture and I think I’ve been on the motorcycle three times.
Oh yeah, and my kitchen is still looks like a bomb went off in it… and won’t be finished until pretty much the end of October… Yup, feeling pretty bummed.
Yesterday I started on the two new prescriptions for pain relief my doctors (in Pittsburgh, PA) spoke about. The pain medicine infused ointment compounded by the pharmacy there.
Perhaps yesterday wasn’t the day to start them though to give a fair trial. Yesterday started at 3:59am when I woke up nearly screaming from pain and could not get back to sleep. Until later that is, ended up spending the entire day in bed from it. Watching tv, reading, studying, and watching Michael hang new blackout curtains in the bedroom (which are really pretty by the way lol).
The ointments came about 10:30 wth the mail, and when I applied them the first time, I didn’t feel much different. But, I think there was just enough to relax the pain long enough for me to fall asleep again. When I woke up a couple hours later I was still hurting but it was less. I was still so exhausted, I ended up sleeping off and on the rest of the day. I applied them four times yesterday and overall, I think it was better.
One ointment is a magnesium/gabapentin and the other is lidocaine. Other than a slightly sticky feeling left over on the area, they aren’t bad. No odor, and they didn’t cause a stinging feeling. I wished my own pain reducing concoctions had worked but they weren’t strong enough. I really hope they work!
Its my first experience with gabapentin and I wouldn’t have thought that it could be delivered in this method. My pain clinic local to me never suggested it, and when we asked them why not they were defensive. I think its time to try and find another pain clinic that’s local (reasonably so anyway) and see if they can help me more effectively. A doctor shouldn’t be defensive when you ask them questions. I followup with the Pittsburgh clinic in about a month.
Wish me luck!
She wakes at 1:30am and writhes, clutching her abdomen. I think, “Yeah! I did it again!” Gotcha!!
Her good morning cuddle with her hubby was going very well until I interrupted her, causing that cool sound she makes when I visit, and bonus! She’s gritting her teeth again. Yeah! Another score! Gotcha!
She’s feeling positive today… what can I do to change that? Oh wait, I know, I’ll derail her optimism with my special gift. Oh goodie, she’s crying…. Gotcha!!
She’s been trying for hours to find a comfortable position and relax. Nope, that’s not gonna happen! Gotcha!
Her stress level is so high her shoulders are up around her ears. Yeah!!! I’m so good at this!
She has so many things to do – all in an attempt to forget I exist… not that I’ll let that happen! Gotcha!
Hmmm, she thinks she’s going out with friends this evening…. “Not if I can help it!” I think with an evil smile. Time to turn it on! Now she’s taking medicine and trying to get rid of me. Ha! Gotcha!
She may smile at everyone and say “I’m fine, thank you,” but I know the truth. I make her miserable. Gotcha!
She’s had two very painful procedures, an exploratory surgery and more doctor’s visits than she can count and I’m still here. After four years, I know she’s beginning to think I’ll never go away. Yeah!!! Gotcha!
There is nothing better than that special moment when she’s at 9.9 on the scale and nothing is helping. This is where I shine like the star I am. I live for those times when she’s so scared and feels so hopeless… Double Gotcha!
Who am I?
I am Kathy’s chronic pain.
Doing what you love is the best reward. And sometimes, there are rewards on top of those…