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.
As if I don’t already have enough to do, I’ve taken on one more. This is something I’m very excited to return to having been ‘one of them’ back in the early 1990’s in Colorado.
I’m a new Avon Lady! 🙂 My friend Angela asked me and caught me in the right moment and I said yes. My goal is to generate mostly online sales since, as many know, I don’t drive so deliveries would be difficult. But I still take my brochures and cards everywhere.
I’m already having a great time and getting to know some incredible ladies, and learning tons.
Feel free to visit my new Avon store at www.youravon.com/kmccabe, and my new blog, www.kathy-mccabe.com I’m available my chat, phone and email, so don’t hesitate to reach out!
Browse my store or shop my latest catalog.
Michael just finished a gorgeous new plate, not for sale since he said its not perfect but I think it is. Judge for yourself. Soon we’ll have some on the store for sale.
I am blessed with a wonderful husband, marriage, and home, I have incredible friends and live in one of the most beautiful places on earth. I work at a career I adore and have colleagues who inspire me. I am free to pursue my hobbies and my husband lovingly supports me in all my endeavors. I live a blessed and happy life. I have invisible illnesses that cause a great deal of physical pain, or vertigo depending on which one is acting up at the moment. I’ve learned there are no cures for either condition, but I’m not dying – that’s a HUGE blessing.
I have another kind of pain that exists underneath everything I do and is present every single day. I’m the mother of alienated children.
I regret so many things, mostly though I regret I was so stupidly naive about how cruel people can be. I was so naive I would never have thought that a parent and grandparent would be so abusive to my kids as to emotionally abuse them by systematically brainwashing them. I bitterly regret I didn’t fight like hell for them after I finally realized what was happening. I realized it when I picked up my kids for a visit and my son started screaming when he saw me and kept it up for 2 hours until he fell asleep in the car. Who does that? God, that was some painful driving I can tell you.
This deep pain I live with bubbles to the surface at random moments. Like today when I was reading my daughter’s latest blog post and before I finished reading it I was weeping so hard, and missing her so much, my dog Patches was trying to jump into my lap to comfort me. She’s a great little wiggling bundle of love that gets so upset when she sees me cry.
There is another pain I live with every single day. One I rarely share and have never talked about on my blog. My son is a murderer. There, I’ve said it out loud to you. You know my secret. My son murdered a man and is serving time in a Virginia prison.
The story is a sordid one. I keep thinking that if I’d had a chance to be more of an influence on him this wouldn’t have happened. He apparently became involved with a woman who was in a bad custody battle with her ex-husband and she manipulated (not my words, these were the words of law enforcement) my son into killing her ex, leaving two fatherless children. She was alienating her children from their father. My son was so used to being with an alienating parent/grandparent he never saw it coming! He killed a man. Then, admitted it and testified against his girlfriend.
I tried so hard to get help for him before all that, I knew there was something wrong when he threatened me. I feared that if he were in front of me he would have hurt me. What a painful thing to think of your own son! I tried reaching out to his command in the military, I tried to write to him, I tried to contact my son’s ex-wife… Nothing worked and it only made my daughter reject me. So, now he has rejected me as well, tried to commit suicide, and wrote to me on that day to tell me I was unworthy of his love and even his handwriting since he had a fellow prisoner write the letter. He didn’t succeed in suicide thank God, but I didn’t hear about it for weeks since my daughter emailed me news of it to an email address that I rarely ever checked. (The first line of that email was “this is in no way an attempt to reestablish communications…..”)
I know this was something my son chose to do, but it is a knife in my heart to think that the sweet little boy that was mine to raise before he was alienated from me could do this. My heart breaks thinking about the children left behind, losing both parents (the mother is also in prison).
These are my pains. Physical pain is tough especially when it is incurable (we will attempt another nerve freezing procedure soon), but physical pain is nothing to heartbreak. I am happier than I’ve ever been, but the heartbreak of my kids is always beneath the happiness. Bubbling out at times from deep below the surface, to render me incapable of anything but weeping, then it slowly recedes like flood waters.