Well here we are already into my 3rd diary. The first two were basically and intro to me and then a thank you to all of those who were kind enough to leave comments and tips for better reading. Now we will take a dive into my daily life and living with chronic pain.
My back has decided to self destruct. I am not sure if it has any specific beef with me or if it is just ornery and wanted to see what would happen. My surgeon, while looking at my CT scans and MRIs told me my back looked like it was from a 90 year old.
The history of my back pain is a long story. To make it short as possible and get to the main point here is a quick run down. Way back in 99 I herniated L4. Had surgery and was ok for a bit until about 2010. Then I started to have issues again. Found out I really needed surgery and chose the option my surgeon said would give me the best results.
Follow on down past the orange snow doodle and hear the rest if you wish.
Since that time of my surgery I have lived with pain. He did fix my pain I had before surgery but now I had lots of new pain right along my spine. 9 hours spent on the table had left my chest bruised and that cleared up but the pain in my back never really lessened even with all the time I spent in PT. My surgeon sent me on to pain management and so I became well acquainted with the hell that is pain management.
Let us start with the chairs in the office. What the heck is up with doctors offices and the chairs they choose ? I swear they choose chairs are intended to maim their patients or at least cause return trips.
Then we have the lovely people working the front desk. Until I went to pain management I had always found those working the front desks of doctors' offices to be very pleasant and helpful. Not so with my pain management office. Until very recently those working the desk were a very surly and down right nasty bunch. They managed to convey the feeling that every single person in the office was there to get drugs to get high. Sure makes a guy feel good to know that the people in his doctor's office don't believe he is in pain. They would actually mess with patients. Not putting in refill requests until the patient was out and actually sitting there in the office and then take an hour or longer to get it to them. They finally got that fixed with a bunch of new staffers in the office after we patients let them know what we were feeling and dealing with.
Pain management is an odd branch of medicine. The doctor gets to deal with people like me who really are in pain and also deal with those who want the drugs. My adopted state of Kentucky has cracked down on pill mill clinics and so there are even more hoops for the legitimate patients to jump through. At my office we have to sign an agreement that we will not try and get pain meds from any other doctor and that we will get all of our meds from the same pharmacy. Any infraction of the rules can see you dropped and if that happens good luck finding a new pain management clinic to take you on. Even switching for legitimate reasons is frowned upon as a move to get more drugs.
Since first starting with them I have seen the doctor once. That was when I started back before my surgery over 4 years ago. I do occasionally see a doctor there but that is when I get shots and it is the doctor who actually gives them not the pain management doctor. I get seen by PAs and RNPs. This really doesn't work well when the normal medications are not working that well. I am a true red head and thus I know for a fact that it takes more pain meds than normal to work for me. I also know it takes more anesthesia than normal. I have seen the studies on this and been told the same thing by the doctors who have been the anesthesiologists for my surgeries. But my pain management clinic has never heard of this. Getting my medications changed because they are not working is a huge ordeal. The last 3 times I went I have told them my current dose is not lasting the 6 hours between doses but only 4. I am still on the same medication and dosing schedule of 1 every 6 hours. So for two hours and then some I get to have way more pain than I want until it is time to take my next dose and then waiting until it takes effect. I have found a way around this by taking 25 to 30 ibuprofen about 20 minutes before the 4 hour mark. I have told them I am doing this and they say to stop but don't change my dosing schedule. So what am I to do ?
There really isn't much to do but find ways to live with the pain. This limits my activities and enjoyment of life. There are times when I hurt so bad I can't even get a hug from my wife. There are days where I spend them in pain so bad I want to scream. I long to go to the ER to get a shot to ease the pain but I don't because I am afraid that might violate the agreement I have with pain management. About 18 months ago I had a string of kidney stones. My urologist offered to up my pain meds and I had to turn him down even though what I was on was not coming close to working for the pain from them.
Pain limits your life. It changes your outlook. You can't make long range plans because pain can change from day to day. I can be okay today and writhing in pain tomorrow. Weather changes are a big thing in my life. I can tell much more accurately than the weatherman when we will have barometer changes and weather changes. Even on my best days I have pain. I live with it and deal with the consequences of it. Since I work from home it is easy to hide my bad days as I sit before my computer crying from the pain. My co-workers don't hear my grunts of pain or see me grimace when I have a bad twinge.
My wife has stepped up so much. I can't lift much so it has fallen to her to do the grocery shopping. Even when I feel well the strain of walking through a store can wipe me out. I can't bend down to get stuff from low shelves and if it is on the floor forget it. I can't pick up anything I drop. Sitting is a huge pain. It is really hard to find a chair or couch that I feel comfortable in. Getting up from bed is fun too. I can't just jump up, I have to roll slowly to my side then lever myself up with my arms. Tying my shoes is out. I feel so helpless at times. Yet I press on day after day.
Living with pain can show you who your friends are. People who you have known for a while seem to think that you are the new drug pusher in town. They ask and beg for your pain meds and when you don't give them up you are the bad guy. You have people try and steal your pain meds. You learn to keep them on your body at all times. When I was working at the office I watched one guy pass my desk and snag my pill bottle which I had left on my desk top instead of locked in my drawer. I con fronted him and he mumbled something about thinking someone had lost them. I got them back but it was so brazen I couldn't believe it.
Then you get the people who believe that taking pain meds makes you an addict. It doesn't matter that you really need them just to get through the day. It doesn't matter that without them you would be screaming from the pain. Nope the only thing they see is an addict. To them you are using them to get high. Suddenly you are an outcast. So you have to drop them from your life. Can't keep them around when they are creating such a negative vibe in your life.
So there you have it. Life with pain. It truly sucks. You find out who your real friends are because they are the ones who don't try and take your medications. Your outlook changes and you learn to value low pain days as gold. You learn that a lot of stuff that used to matter doesn't any more and you learn to value other things that before you may not have even noticed.