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A Year Long and Ongoing Adventure in Chronic Pain – Thoughts, Pointers, Advice, and More…

How many of you know people who suffer from chronic pain? For many, it’s something suffered in silence, or from people who have a bad back, bad knee, etc… For others, it’s something I won’t say more serious, per se, but more formally diagnosed, such as rounds of surgery for various ailments, broken bones, and lifelong medical conditions leading to pain of the muscles, joints, bones, etc… In recent years, it has been acknowledged that women can suffer chronic pain from Fibromyalgia, stenosis, and the list goes on and on. Looking at someone, you never know what they may suffer from in silence.

Although I’ve dealt with pain before, the word chronic was only in my personal vocabulary because of someone who I’m close with (THAT is not my story to tell, however).

Over a year ago, I started experiencing what I believed to be back pain. When it flared beyond what I could tolerate, I went to urgent care, was told I was working “wrong”, was given pain killers and anti-inflammatories, stretching exercises, and kicked on my way. Over the next number of months, the cycle repeated, minus the doctor visits and minus anything aside from over the counter medicine ~ pain flare, stretches, deal with it as long as possible, rest, repeat. Not working wasn’t an option (that’s not what we’re talking about today), so I did what I had to do to allow me to get to work the next day.

On May 8th, 2013 (yes, I know the day), everything changed. I was in Los Angeles late one evening for an event, and about 2/3 of the way through, my back locked up in pain… bad… That was unfortunate enough, but I still had to drive back home in San Diego County (over 90 miles). Oh, and I decided to finish the event before leaving. By the time I got home, I should have gone to the emergency room, but I didn’t. My assumption was that they would throw pain medication at me and send me home, which I didn’t want. Instead, I waited, called my doctor the next day, and ended up seeing an on call doctor, who threw pain medication and anti-inflammatories at me until I could see my primary care physician.

What followed were trips to primary care physicians, on call doctors, surgeons, emergency rooms, tests, more tests, fights with hospitals, insurance providers, approval departments, staff at all of the above, etc, between May 2013 and October 2013. I’ll post another article explaining the comedy of errors story of the actual medical issues and what happened with the providers… it’s a doozy that is ridiculous and could have been avoided on so many levels if doctors listened to patients in some cases (some of the doctors are amazing in some ways and not in others), if staff listened to their doctors and/or to the patients, insurance providers listened to their customers, if the approval departments communicated better, and so much more…

At the end of the day, over a year later, a lot of pain ended up heaped on me that could have been avoided. I had an unnecessary trip to the emergency room, an unnecessary emergency surgery and procedure, bulging discs and, basically, a back that is only injured because another problem was completely ignored.

Now, on to the chronic pain part, now that we’ve gone through the miscellaneous behind the scenes stuff…

I’ve learned some lessons in regards to pain along the way here that in some ways make me sad and in other ways are rather enlightening. To anyone reading these, I’m not trying to make you sad, it’s all about education here… Believe me…

1. Pain is relative. If you look at the top, there’s a pain scale. When you go to the doctor, they ask you what your pain level is. I hit my first “10” when I was at San Diego Comic Con this year (Saturday, which was the day I left, if anyone actually reading this wonders why I left), BUT that was a few days before I went to the emergency room. Since then, I have hit such higher levels of pain, that “10” is probably now my “6”. Kind of funny, right? So, your pain scale is your pain scale. If you know someone with chronic pain, don’t feel bad if you say you’re feeling an “8” when you go to the doctor, knowing that your pain couldn’t possibly be as bad as theirs. Same goes with relative pain. If you say your back hurts, but you know someone who has had, say, ten back surgeries (wink wink, you know who you are), don’t feel bad saying your back hurts.

2. Don’t forget you ARE in pain. Since I have been in a considerable amount of pain for a while now, I’ve gotten used to it. It’s actually kind of weird! I went to the doctor today and they asked me my pain level and I said “4”, because of the whole “Pain is relative” thing I mentioned above. The reason I mention not to forget is because if you do actually forget, you may do something you’ll regret later. I’m still getting used to being careful with my back in regards to movements, posture, etc. Things as simple as how I grab a seat belt, turning my head to look for traffic, etc, I need to do very carefully, and if I forget the simple word “pain”, I may slip and cause a quick stab of pain which can blur my vision (a sharp stab of pain I DO NOT WANT). There is a difference between adjusting to life in pain and not being in pain. Learn the distinction.

3. Do not pre-medicate / pre-treat for pain (*READ MY DISCLAIMER). When you go to the Emergency Room, the first thing they want to do is dope you up. I knew that going in, so I warned them not to give me anything. Why? I wanted to know what was going on! I was in a lot of pain, but the first thing I told them was to give me as little stuff as possible, because I wanted to know what the heck was going on! A lot of people, I’m told, have the mentality of, “wake me when it’s over.” The problem with that is that so many things can happen… You’re conscious, people ask you questions, you answer, and everyone thinks you’re lucid, but you’re not. Once the pain gets to a certain point, the pain meds kick in, and you’re worthless. For me, I know I was lucid when I was in the ER and in the hospital, because I know I told them actively to keep things to a min, and it was in my charts, but I was told afterwards some of the goofy things I said and did.

Sorry, that was a bit of a side-track on that. If you are told by a doctor that you CAN take X pills every Y hours AS NEEDED, take them as needed, not at the maximum dose. Use judgement on it. I have a very strong feeling in regards to pain medication, but, please remember, I am no expert, and I do not judge. Pain medication is there to help people LIVE, not to make life pass by. There is a distinction there! Think about when you used to get a headache that was so bad you couldn’t hardly move… You’d take something for it, it would go away, and you’re back to the races. For me, I used to get headaches all the time. I mean, doozies, all the time. Did I go to the doctor for them? Of course not! What was my solution? Headache medicine! I did this for a long time. Turned out, I just needed glasses. So, I was pre-treating for headaches, and it turned out the underlying problem was that I just needed glasses (and allergies, too, it turns out, but I’m just stupid). Point is, I was pre-treating. In the end, was I getting headaches also because I wasn’t taking the headache medicine, too? Yes? It becomes like any other addiction. Drinkers don’t drink and get headaches. People who drink lots of soda and coffee don’t have their morning cup/can get headaches…. You get the idea. With pain, it should be the same in theory, right? Well, pain gets a bit more complicated, especially with chronic pain. You see, with a lot of people, the pain never goes away. You can reduce it, but it doesn’t go away. By the time you start deadening the pain to the point it helps, you’re no good to the world. There’s a balance there. How much can I deaden the pain and still live! Again, remember here, I’m no expert, and I’m leaning on my experience with my local Yoda…

I’ve come to learn with the sliding scale of pain that what I couldn’t possibly consider doing two months ago while I was in pain, I can do today. This weekend, for example, I was in more pain than my first “10” on the Saturday of San Diego Comic Con 2012 (days before landing in the Emergency Room), and yet I was hanging out with a group of family with only an Icy Hot patch on my back, smiling and commenting about the menthol smell my back was giving off. Pain meds? Nope… Probably should have, but I was being stubborn, not resistant in that case. I’m not anti-pain medication, so don’t think this in an anti-drug post or something.

What I’m trying to say is that our bodies are magical constructs that work around things, and what you couldn’t tolerate yesterday, you may be able to tolerate today. You should not wake up every day and say, “I had a bad day yesterday, so I’m going to take pain medication today to make sure I don’t have a bad day today, too!” It sets up a cycle you’re never going to get out of… That’s just bad all the way around. Just think about it. Take what you need to, not what you think you need to.

*** Disclaimer… There are a LOT of people out there… A LOT… Who have debilitating illnesses, disorders, etc, who DO require pain medications daily. This isn’t a matter of pre-medicating. This is life for them. This is beyond chronic pain, although they may have chronic pain on top of it. Be nice to them… they deserve it.

4. Living with pain. This ties to some of the points above as you’ll see, but when pain is new, it’s completely intolerable. You just don’t know how you’ll continue to exist with this new thing in your life that’s oppressive, stressful, and just plain annoying. It gets better. Well, maybe it doesn’t. In some cases it get’s worse, but you learn from it. Some people deal with things that are degenerative, which is truly unfortunate and saddening, but they learn things along the way about pain and pain management that allows them to cope with the whole process. It’s not just putting on a brave face, but having a relationship with the pain. Sometimes life can’t completely stop when bad things happen. For me, I was in the emergency room, then in the hospital for five days, then recovering at home, but I was still dealing with a large issue that didn’t kill me, but was one of the reasons I was in the hospital for, it was getting worse, and I regularly had to get out in the world. Life didn’t stop. Now, if it was bad to the point that I couldn’t have left the hospital, they wouldn’t have discharged me so keep that in mind, of course… we’re not talking death’s door, we’re just talking “managed pain” in the emergency room’s eyes.

Along the way, through the pain, through the frustration, the appointments, etc, you realize that the cycle of pain, pain, and pain can’t be it. At some point, your brain has to get room for thoughts outside of that range. Mine did… While I spent three months with my full time job being dedicated to healing, my brain has been dedicated to healing in other ways. Part of that healing wasn’t pain tolerance so much as a better understanding of the pain relationship. Pain doesn’t go away, but it can be set aside or compartmentalized if you let it. Why do you have to let it rule your life? I’m not saying it’s easy. If it was easy, everyone would do it. I’ve had practice in compartmentalization, and my pain “Yoda” has had almost 20 years of chronic pain experience. I won’t bore you with a bunch of recommendations on medication types or anything like that, but I would say to look around for what might work for you. Whatever it is, though, it’s about finding a way to let go of the stress and anger associated with the pain, because that you can’t compartmentalize. Once that is taken care of, you and the pain can stand side by side, and, in theory, you can actually function in some ways. This might not work for everyone… It might not work for anyone. It is working for me right now. You have the spikes in pain, you need to take something because of a rough day, bad physical therapy, a slip, fall, wrong move, etc, etc etc. That’s part of life. The rest, the “chronic”, going to be there whether even if I do nothing pain? That’s the part that could, in theory, be compartmentalized. Worth a shot? Just maybe!

5. Don’t forget the pain is there, though. No matter how much you may get “used” to living with pain, however, you need to make sure it’s a scarlet letter ingrained on your brain until it’s not needed. The alternative isn’t good. When you’re used to moving so carefully all the time, accidentally twisting quickly for a quick glance over your shoulder while driving, moving your neck just a little too far, quick sharp twinge of pain, flash of blindness for just a fraction of a second, and what happens in front of you on the road? Could you have an accident? It’s possible? The pain alone when caught off guard is bad, but you don’t just have yourself to worry about. When you have a good relationship with your pain, it’s smart to also have a very intimate knowledge of your limits and get used to your activities. If you need to drive, don’t start by driving in heavy traffic, drive in low traffic during the day several times to build up your experience in your new circumstances, for example. Train yourself to get your “muscle memory” used to the new and improved you, the one where you and your pain are partners, where you don’t have to expect the pain every time you move. Try to move slowly enough to avoid pains, or to move just shy of those angles, etc… See if it works. The same goes for postures, leaning, etc…

6. If you don’t want to know, don’t ask… If you know someone has issues with pain, don’t ask if they’re in pain. You’ll know the answer. Also, don’t assume just because they are in pain, they can’t do something and/or don’t want to do something….

7. Don’t assume the worst… Have you ever stood behind someone in line at the local CVS or Rite-Aid to pick up your allergy medicine, for example, and see them pick up a prescription for pain medicine? They look completely normal… What’s with that?!?! Don’t assume the worst of people. Some people suffer in silence. Some people have hidden disabilities. Some people have hidden pain. Some people ARE a pain. I fall into a couple of those categories for now… 

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