I have not written a blog post for over 5 months, since Amy's mom passed away. That should give you an idea of the year I've had.
I debated writing a blog post about this because I do not want to be perceived as complaining or looking for sympathy. I learned long ago that sympathy is nice, but doesn't pay the bills or unkill my dog you ran over.
But the more I talk to people, the more I realize how much lack of understanding or outright misunderstanding exists concerning chronic pain.
Also, when I am finally between bouts of being knocked on my ass, I am an incurable blab.
"My father always used to say, 'What doesn't kill you, makes you stronger,' - 'til the accident." - Jimmy Carr
I am not superstitious, but I'll be glad to see 2013 behind me and will probably avoid any years with a 13 in it from now on.
Nietzsche is famous for coining the phrase, "That which does not kill us makes us stronger." I always found it odd when Christians and even preachers in the pulpit use this quote from the same man who also said "God is dead".
Maybe they think that infamous, cantankerous atheist 's famous line is still shorter and catchier than:
My brethren, count it all joy when ye fall into divers temptations; Knowing this, that the trying of your faith worketh patience. (James 1:2-3)
But does that mean trials or suffering themselves are inherently good things? Some would disagree.
Nietzsche's maxim may be true for bacteria that survive antibiotics, mutate and become more resistant. But humans are notoriously different than bacteria, the least of which being the increased difficulty of shoving a whole one of us under a microscope.
In fact, experts have said that "... the bulk of psychological research on the topic shows that, as a rule, if you are stronger after hardship, it is probably despite, not because of the hardship."
But myself being (an infamously terrible example of) a Christian, I do tend to think pain, suffering and trials usually just prove how strong you already are beforehand. And being forced to exercise that, your faith and God should help to make you stronger for future trials.
Trust me when I say I have read every single verse, inspirational quote and book. And I've cycled through faith, doubt, anger, cursing, depression, apathy, hunger, laziness, charley horses and several other emotions.
But that does not mean pain and suffering cannot be equally destructive to us in other ways beside "character".
On top of my chronic pain, my doctor diagnosed me this year with the neurological disorder Central Sensitization, a.k.a. Central Pain Syndrome or CPSS. They first discovered the disorder with people who had strokes or spinal injuries. This is different than the previously diagnosed chronic nerve pain that I've had for over 15 years and complicates things quite a bit.
It is difficult to explain to people, but the short version is that my CNS ability to regulate pain is damaged from almost 20 years of chronic nerve pain, injuries, and surgeries. And the catalyst was likely my cervical disc surgery in 1996. I woke up from the 1996 surgery with a heart arrhythmia, hearing loss, migraines and other symptoms that already pointed to nerve damage.
The end result after dealing with those problems over 15 years is my peripheral and central nervous systems are continually malfunctioning and deteriorating. If I suddenly find myself in excruciating pain from a serious injury or surgery, my spine has undergone physiological changes and as a result, cannot turn that pain back off again by itself.
That's not a typo.
Long after any serious trauma has healed (potentially for the rest of my life), it will hurt as bad as the day of the trauma. Unless they give me the one thing I demanded they take me off of 5 years ago... massive doses of opiates. It is not imagined pain... it is the same chemical and electrical signals from the original trauma, unable to turn off. Others with CPSS and suffered trauma like a broken leg had to be put into a near coma to finally shut off the signals.
And that is on top of my nerves already malfunctioning and sending pain signals from either regular stimuli or none at all.
Imagine the UPS guy delivering a package full of horse crap to your house each day and it has another person's name and address on the label and he refuses to stop no matter what you tell him. And why is some weirdo ordering horse crap anyway?!
At the risk of sounding like I am competing with the poor s.o.b with the world record for surviving the most lightening strikes, the year 2013 worked overtime to kick my ass.
Poor Roy Sullivan survived 7 lightening bolts... typically 7 more than most survive... only to shoot himself at the age of 71 over unrequited love. So I can't swap war stories with Roy anymore. The Internet will have to do.
- In February I had a routine shoulder surgery but it ended up being more extensive than they planned. The removed part of the bone by the clavicle joint, detached my bicep tendon and reattached it to the bone with screws and then discovered a rotator cuff tear and tied it up as well.
- But within 10 days, the surgery site got infected, swelled up and was in excruciating pain, worse than the day after surgery.
- I was sent into the hospital and they aspirated deep into the shoulder joint with the longest needle allowed by law. They were trying to get a culture by scraping the bone with a needle for several minutes. Amy was in a far enough away waiting room, which is the only reason she did not hear me screaming.
- Within days I was scheduled for another surgery to wash out the site. But I woke up in far worse pain again.
- The the head of the Infectious Disease came in and sat down. I told her they already cut me open and washed out the shoulder, but thanks for stopping by and could I offer her some jello. She told me to shut up and that I still had another surgical procedure to do.
- After she explained everything, several technicians came in and installed an I.V. catheter inside my arm and running all the way to my heart. They started with a tape measure to guess the vein length and ended with an ultrasound to make sure it was within millimeters of the opening of the superior vena cava. And there was a lot of blood, which I now know you see far less of when you're unconscious for a procedure.
- The reason for the I.V. was to carry with me an almost continual drip of one of the most powerful antibiotics ever, probably invented by Monsanto. The difference was that I had no metal stand to hook it on and wheel around and I had to give myself the doses 3 times a day, connected for several hours per dose.
- I was thinking this sucks, but at least there is finally a light at the end of the... *whoopsy*! #$%^&!!!!!
- After the catheter was installed, one of the nurses incorrectly injected that world's most caustic medicine (hence internal I.V. direct into my heart) into the regular wrist I.V. Again. And again. And again. They discovered it when disconnecting me for discharge. The Infectious Disease tech looked at her with big eyes and got really quiet.
- When I woke up the next morning at home, the vein from my wrist to my elbow had swelled up and looked like someone put a foot long Twizzler under my skin. And it felt like someone smashed the arm with a crowbar and then tried to hide the evidence by setting it on fire. Even on enough narcotics to fell a rhino, it was still excruciating. But luckily it went away after only 5 short days.
- All the while this was happening, I was rushing with Amy to the hospice as her mom died of cancer in April. Not being physically strong enough to give your spouse the kind of support you wish you could at such a time can make a person a bit... angry.
Let's take an intermission and just remind ourselves that which does not kill us only... *punches Nietzsche in the head*... *knocks all his books off the shelf*...
Back to our regularly scheduled lightening strike...
- After a wonderfully short 4 weeks of an I.V. hanging out of my arm, things finally started to get bad. I mean worse. I mean terrible. Finally!
- My surgeon said my pain levels were off the chart for two months post surgery and referred me back to the pain clinic I had been a patient of for 17 years.
- After describing how I won the turd jackpot of least requested diseases ever... one where "pain from trauma cannot ever, ever shut off by itself"... he recommended we try enough narcotics to kill a FAMILY of rhinos.
- I said I made him take me off all pain Rx years ago so I would rather not. He said, quote, "...you have no choice. It is dangerous to not get these levels down asap. You went through sheer hell last time going off opiates. Are you ready to do it again?"
- I immediately removed him from my Christmas card list.
- Because my liver is experienced and my nervous systems and pain systems are so damaged, the amount of opiates it takes to have any effect on me (equivalent of 200mg morphine a day and up) are dangerously high for most people at my age and weight. It would knock many out cold and even kill some. But it also means I have been able to luckily not get addicted, because I do not experience the common side effect of euphoria. I function "fine" and become physically dependent, but not addicted, which helped choosing to go off twice now. But although it is very hard for me to get high from pain Rx, at least I get all the horrible side effects going off them.
- When the pain signals were finally forced low enough (they are still not "off", but are finally more closely tied to the injury continuing to heal... normal, acute, "useful" pain) we talked about slowly weaning off the Rx.
- I was thinking this sucks, but at least there is finally a light at the end of the... *whoopsy*! #$%^&!!!!!
- From late July to the end of August I was sick from detoxing off the medicine. But after 4 weeks, things started to change and I finally got violently sick. Worse than the last time, 5 years ago. Amy had to sleep in another room because I was convulsing all night. For the last 4 days, I struggled to stand. I could walk across the room, but was immediately so exhausted that I would collapse in a chair. I tried to write something at one point and the pen was shaking too bad to do so. That was two weeks ago and I am still sick with multiple side effects of the Rx detox but improving a little bit every day.
- But I also have a new warning on my health record that I will have to do this all over again for any serious injury or even minor surgery.
- And also that I'm completely off the pain Rx again, the nerve damage in the right arm is returning to its regular levels of disabling pain. Off and on for over 10 years, I have been unable to rest my right palm on anything. I have to curl my fingers up so the skin does not touch, as it always feels like I've burned my hand on a stove.
Chronic pain, whether it is neuropathy or fibromyalgia, is a serious battle for many people. Most others without chronic pain have a severe misunderstanding of it, but everyone also deals with their own issues and trials and do not feel pressed to become more informed about the problems of everyone else. I understand that and that's fine.
But since I cannot stop being a blab, maybe someone will have learned a little from this, even if it is the courage to blab about their own problems. Your real friends will take the time to listen.
At the very least, I am getting this in before and in case an 8th lightening bolt is on the way to finish me.
Seriously though, having chronic pain for almost 20 years has multiple times broken me down and almost destroyed me. I have dark tales. But in other ways, I am healthy and blessed. I may not have a great sense of humor, but at least I still have one of any kind.
And I have a wonderful wife and kids. And quite a few people I call good friends. So I still consider myself a very lucky man. I really do.
I can't say my pain has made me stronger, but it definitely has made me stranger.