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.
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.
Prior to this, I’ve been using two different pain relievers, one is twice a day and the other is as needed and frankly, I felt it was needed too much. I’ve hated taking pain medication all my life and these last three-plus years have been a study in frustration. Do I try to tough it out or do I take the pain medicine…. Struggle with the pain or feeling ‘less myself’…
Since Michael brought home the ICY HOT Tens unit, I’ve been using it daily, keeping the pad on sometimes all day long. But…. It’s been WORKING!!! I’ve had a dramatic reduction in the amount of pain medication I’m taking – and that to me is a HUGE WIN! It doesn’t take away all the pain, but it’s clear to me that it’s taking away much of it. Next step, we are going to the pain clinic in a couple weeks for my regular appointment and I will discuss whether a more professional tens unit will be useful. I think one with smaller pads would be good. And if they don’t want to or don’t think it would be beneficial (How could they not???) I’ll continue using the unit I have.
Looking over the information on the ICY HOT unit, it doesn’t specifically say it’s for the reduction of chronic nerve pain but it should! I plan on letting them know how wonderful it’s been for my life.
I can finally plan things! I don’t feel like I am just living for the next pill, I’m finally living for REAL! Thank you ICY HOT for making such an incredible product, and, thank you Michael for bringing one home!
Today, September 9th, is Pain Reality Day.
Its the day where you tell the truth about your chronic pain, no glossing over it with pretty words. Let people know how you’re really feeling. For those of us who try not to bother anyone with our everyday battles, this is so difficult.
I took pain medication in order to sleep through pain. I woke up anyway several times last night so I’m awake this morning with a headache from lack of sleep. My eyes are looking bruised with shadows. My lips are compressed slightly. The pain that is my everyday companion is situated in my lower right abdomen. Just up from my groin, down and to the right of my naval. Its right where you bend, twist, turn, and move throughout the day.
It sits there every moment, below the skin like someone is holding a lighter and a pair of vice grips on it at the same time. Waiting to erupt. I may look fine on the outside, but on the inside, I’m not. I wait for my everyday movement, my simple walking to my office, the bending to pick up Patches, the stair climbing, the sitting and relaxing to aggravate my pain into a roaring, clawing tiger. There is no particular trigger, my pain often wakes me from sleep.
What is causing this? My doctors believe that I have a nerve, or branch of a nerve, that is trapped in my abdomen. I’ve had nine abdominal surgeries since I was sixteen. Its believed that one of these surgeries accidentally trapped the nerve, so now, every day is painful. Its no one’s fault. This is one of those unforeseen complications that we’re warned about when we go in for surgery.
And so far, no one can fix it. I’ve had a nerve block (twenty-four blissful hours pain free) and two ablations. The first was the freezing kind, and the second was a radio frequency ablation. Neither worked, although I was very hopeful both times. The second disturbed a nerve down my right leg and has given me excruciating pain there too. But I am assured that this should resolve ‘over time’.
My pain manager has done extensive research on my case, and other than one trial in Oregon that highlighted ‘dissecting’ the nerve to relieve pain, no other doctor wants to touch this. He doesn’t feel that the Oregon trial would be right for me since there is no way to tell exactly where the nerve is trapped. Traditional tests such as nerve conductivity studies can’t be done in the abdomen since nerves don’t follow prescribed paths like they do in arms and legs.
And now, here I am. Feeling ancient and ugly because of the stress of dealing with chronic pain (and vain enough I’m not showing you a picture of that face). I have hidden much of it – unless I’m in the middle of an episode – because I don’t want to make people uncomfortable. In reality, pain is always on my mind.
When I go on the Tri-Glide with my husband I pre-medicate. When I want to go for a hike – we’re talking a light hike – I pre-medicate. If I know I’ll be doing something that means I’ll be more active – such as exercising or walking – I pre-medicate. Just to keep the edge off. I also have to be sure I have medication with me wherever I go. Then I have to worry about being able to get something to eat so I don’t take my pain medication on an empty stomach.
When the pain blasts past the medication there is very little relief. I am doubled over or curled into a ball with my hand clutched to my abdomen – not that that helps at all, its just a reflex. Waves of white hot lightning blast out, twisting and burning and radiating out from the spot just a little. That’s one good thing I guess, the pain doesn’t radiate very far so its very confined to one place. Perspiration forms all over my body as I fight the pain. I take more medicine and beg to get through it.
After the episode is over, I’m shaken to the core. Weak and trembling. And waiting until the next time the pain attacks me again.
My method of compensation is to keep my mind busy. I’m a busy virtual office assistant with some incredible and understanding clients. I’m a photographer, I do wood work, and pyrography, I’m an herbalist (and believe me I’ve tried to find something to help!), and my latest love is Avon. Without these activities I would be lost and depressed.
So, now you know the truth. The next time you ask me how I am and I say Fine, look me in the eye, and ask me again. Because, this is my reality.