It's Saturday now. It's taken me two days to absorb the consultation at the Hackensack Pain Clinic, where after a long discussion about the details of my health history, I was told I would most likely be in pain for the rest of my life.
While I was told about treatments that might help--a change in medications, injection therapy (which most likely wouldn't work as this has gone on too long), and a type of brain surgery where a device is implanted to re-route the pain signals--the words that echo are the ones that sounded so final. This condition will never heal on its own, as what I'm experiencing now is something akin to phantom limb pain. The source of the pain is long gone; what is firing now are essentially memories of it.
The pain has been worsening in the last month or two, which has made me careless, as I've been smoking again, albeit one or two here and there. Still, it doesn't help matters any.
The doctor I saw was perhaps the most empathetic doctor I've ever seen. He gave me the bad news first and let me cry in a fit of shock at hearing words I wasn't expecting. I might have had an easier time hearing I was going to die than hearing I would be feeling this pain for the remaining decades of my life.
He actually made that point to me--that I was still a relatively young person who had a lot of life yet to live, and therefore something like this motor cortex stimulation (the brain...er...procedure) should be something seriously considered.
I woke up feeling just so sick this morning from all the pills I've been taking, and just so sad, as if a grey mist was circling my entire room. Of course, it might have been the dust build-up, as I can't bring myself to clean anything right now. My poor cat is acting as the dust mop. As she rolls around the floor, her fur picks up all kinds of debris. She knows something is up.
My friends in recovery are so concerned about the effect of this news on my addiction, but addiction right now seems like the least of my concerns. Whatever it takes to get me through the day is what I'll take, addiction be damned.
I'm trying my hardest to move forward. I saw a chiropractor yesterday, and will continue to see him for trigger point therapy; I've made an appointment with my old acupuncturist for Monday; and I've made an appointment with the neurosurgeon recommended by the pain doctor for Wednesday.
It's all a bit overwhelming to find myself at this level of pain again, and at this point of despondency. I suppose the question I'm grappling with now is not how much suffering one person can take, but how many times can they take it?
I'm trying to push myself out the door to work on my Christmas card project down at my studio, but I'd so much rather watch television and escape into lives and stories where things always work out.
I'm also trying hard not to feel sorry for myself, but all this trying in every direction is eroding me to the bone.
I just can't go to the recovery rooms anymore. While I'm happy for everyone that God is working in their lives, as many have truly found peace and contentment, I just can't be there right now and listen to it. Instead of finding understanding and fellowship there, I'm finding, well, nothing.
That said, I'm still working with my sponsor, who I love, as I do enjoy the Twelve Steps. But that's about as far as I can go with the recovery folks right now.
While these other therapies the pain doctor spoke of do present some hope, I just can't feel it for some reason. I'm so used to everything going wrong at every turn that I dare not get my hopes up for anything. While I said in a recent post that disappointment hasn't killed me yet, I fear there IS a limit as to how much one can bear.
Just like there are no absolute truths, there are limits to everything, and I've hit the limit of just about everything I can currently think of.
Getting out of this mess will be a miracle indeed.
Welcome to the drawing board of Mary Ann Farley--artist, writer, musician and passionate Etsy merchant. These days, I'm literally back to the drawing board due to a chronic pain condition. This blog will detail my healing journey, which so far has been a catastrophic disaster, but in a nice way. Welcome to my world.
Showing posts with label atypical trigeminal neuralgia. Show all posts
Showing posts with label atypical trigeminal neuralgia. Show all posts
Saturday, December 13, 2008
Wednesday, November 12, 2008
Popping Mad
Oh, man. Today is really bad. There's just something about this pain that is so debilitating, so crushing to the soul. I tell people it's like someone injected acid into my face and jaw, and lemme tell ya, it's hard to imagine at the moment what could be worse in this life.
Perhaps there are equivalents, like losing a child or being unjustly imprisoned for years, but as far as I know, this particular type of jaw/face pain (also known as atypical trigeminal neuralgia) is the only condition on Wikipedia called "the suicide disease," as sufferers find it so unbearable, and ultimately become despondent and suicidal because it's so untreatable.
In fact, that Wikipedia entry is truly the best description I've read so far of what I suffer through, and believe me, I've read plenty.
I know there are unconventional things I've yet to try to find relief, but frankly, I'm exhausted. Plus, life goes on; I need to earn money to stay afloat (disability doesn't cover my expenses), bills need to be paid, obligations must be met. And there are those days or weeks when the pain just isn't so bad, and I enjoy simply living my life. The last thing I want to do during these periods is make an appointment at that swanky pain clinic. I want to paint, or hang with friends, or buy shoes, or visit my nieces!
When things are bad, though, after so many years of this ordeal the idea of making even more appointments and telling the whole story all over again--with full knowledge that absolutely all of my previous efforts have been in vain--is just torturous. It's certainly easier to just pop pills and forget about it all for awhile--to drift off into a temporary Utopia where the darkness isn't quite so black.
I don't have any pills right now, though. Damn! I want to just check out; go watch "House" reruns and pop pills whenever House does. I want that smooth feeling to come over me that everything is going to be okay, or better, that everything is okay. I want the pain to lift just a bit (it never goes away completely), so that I can sigh and maybe take a nap.
Instead, I sit here wrapped as tight as a drum, wondering how any creator could have screwed things up so completely to have this condition even exist.
Sometimes people say to me, "Everything happens for a reason."
"Oh, really?" I respond (just in my mind, of course). "Let's hear you say that while I slice your skull with this machete."
I don't even know what I mean by that other than I'm obviously pissed and upset and sick to death of that irritating concept called "spirituality."
I suppose if I had a boyfriend or husband, my workload in finding a cure would be divided. But every responsibility of my life is on my shoulders and my shoulders alone. Normally, I actually enjoy this and rarely even think about it. But when I really need help of the more dire sort, I'm acutely aware that I'm in this by myself, and it's up to me to do it all--to seek out the treatments, make the appointments, find transportation, then follow whatever program is laid before me.
For years now, it's all been paid for with credit. Yes, money is another issue.
My friends in recovery encourage me to call someone when I'm suffering, but sometimes calling friends or family is worse because no one knows how to advise. No one has dealt with anything even close to this, and I actually feel bad for them that I can sometimes be so inconsolable. It gets frustrating for us both when every suggestion they make is something I've tried, and while this often makes me sound negative, I'm basically just reporting the facts.
Ultimately, I end up doing a faked cheerfulness before I get off the phone, just so that they don't feel so bad.
It's just way easier sometimes to sit back and start popping. Sometimes friends say, "But you could die from those pills!" Trust me--I'm not clinically depressed when I say, "Yeah? And?" The only reason I don't check out is that there's so much of the good life I've yet to live. I know it exists--I've seen it in movies.
I dunno. I gotta find some pills. This is just awful.
*************************
Perhaps there are equivalents, like losing a child or being unjustly imprisoned for years, but as far as I know, this particular type of jaw/face pain (also known as atypical trigeminal neuralgia) is the only condition on Wikipedia called "the suicide disease," as sufferers find it so unbearable, and ultimately become despondent and suicidal because it's so untreatable.
In fact, that Wikipedia entry is truly the best description I've read so far of what I suffer through, and believe me, I've read plenty.
I know there are unconventional things I've yet to try to find relief, but frankly, I'm exhausted. Plus, life goes on; I need to earn money to stay afloat (disability doesn't cover my expenses), bills need to be paid, obligations must be met. And there are those days or weeks when the pain just isn't so bad, and I enjoy simply living my life. The last thing I want to do during these periods is make an appointment at that swanky pain clinic. I want to paint, or hang with friends, or buy shoes, or visit my nieces!
When things are bad, though, after so many years of this ordeal the idea of making even more appointments and telling the whole story all over again--with full knowledge that absolutely all of my previous efforts have been in vain--is just torturous. It's certainly easier to just pop pills and forget about it all for awhile--to drift off into a temporary Utopia where the darkness isn't quite so black.
I don't have any pills right now, though. Damn! I want to just check out; go watch "House" reruns and pop pills whenever House does. I want that smooth feeling to come over me that everything is going to be okay, or better, that everything is okay. I want the pain to lift just a bit (it never goes away completely), so that I can sigh and maybe take a nap.
Instead, I sit here wrapped as tight as a drum, wondering how any creator could have screwed things up so completely to have this condition even exist.
Sometimes people say to me, "Everything happens for a reason."
"Oh, really?" I respond (just in my mind, of course). "Let's hear you say that while I slice your skull with this machete."
I don't even know what I mean by that other than I'm obviously pissed and upset and sick to death of that irritating concept called "spirituality."
I suppose if I had a boyfriend or husband, my workload in finding a cure would be divided. But every responsibility of my life is on my shoulders and my shoulders alone. Normally, I actually enjoy this and rarely even think about it. But when I really need help of the more dire sort, I'm acutely aware that I'm in this by myself, and it's up to me to do it all--to seek out the treatments, make the appointments, find transportation, then follow whatever program is laid before me.
For years now, it's all been paid for with credit. Yes, money is another issue.
My friends in recovery encourage me to call someone when I'm suffering, but sometimes calling friends or family is worse because no one knows how to advise. No one has dealt with anything even close to this, and I actually feel bad for them that I can sometimes be so inconsolable. It gets frustrating for us both when every suggestion they make is something I've tried, and while this often makes me sound negative, I'm basically just reporting the facts.
Ultimately, I end up doing a faked cheerfulness before I get off the phone, just so that they don't feel so bad.
It's just way easier sometimes to sit back and start popping. Sometimes friends say, "But you could die from those pills!" Trust me--I'm not clinically depressed when I say, "Yeah? And?" The only reason I don't check out is that there's so much of the good life I've yet to live. I know it exists--I've seen it in movies.
I dunno. I gotta find some pills. This is just awful.
*************************
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