Sunday August 11, 2019 – Bonus Day 76
I woke up without pain on Monday, May 27 2019. It was Memorial Day. I lived with severe pain for 18 years 8 months and 5 days. I accomplished more in those first 11 weeks than I had over the past 19 years combined. This is a long summary. It has taken almost 19 years to get to this point! Please forgive me if it looks like I’m writing a book – I am. I appreciate you taking the time to read it!
This is not a good time to live with untreatable chronic pain. Chronic pain patients are the modern day version of lepers. No one wants to touch us. No one wants to treat us. The suicide rate in the chronic pain community is very high. No one seems to care. My doctor notified me on March 27, 2018 that he would no longer be treating my permanent pain. I did not expect to see 2019. I was at peace with the finality of that thought a year ago. I had lived with severe permanent pain since 9/22/2000 and I was tired.
Several months earlier, in December 2017, I declined having an implantable pain pump installed in my body. My doctor, a pain management specialist, urged me to have this surgery so the state would stop harassing him over the amount of pain medicine he was prescribing me. His words were “the state is too stupid to realize the medicine in the pain pump is equal to the what you’re currently getting.” Not once did he say this surgery was in my best interest, it was solely beneficial to him.
After extensive research, I declined this surgery. The failure and complication rates were too high for me. Ten years ago, I would have said “yes” to any recommended surgery. Not anymore. I’ve done all the invasive procedures I’m willing to do.
They asked again at my January 2018 appointment. Again, I said “no” to the implantable pain pump. They didn’t like that answer and I was dismissed as a patient when I arrived for my March 2018 appointment.
This doctor was the last pain specialist in my area willing to treat patients like me and I was tired of the fight. After losing my doctor, my only goal for 2018 was live long enough to walk two of my daughters down the aisle at their weddings. One wedding in April and another in June of 2018.
If you don’t know my history, please allow me to bring you up to date. I’ve had serious health issues due to a car accident that happened on September 22, 2000. It was our son’s 3rd birthday, our kids were 3, 5, 7 and 9 at the time of the accident. My vehicle got t-boned on the driver’s side by a college student who lost control of her car on a wet road. I had just enough time to recognize I was going to get hit, close my eyes and hold on. She knocked my van three feet off the road. The police said her speed was at least 40MPH when she hit me. I was holding on so tightly to my steering wheel that the impact ripped the muscles and ligaments that attach to the thoracic area of my spine.
My neurosurgeon said tensing up is one of the worst things you can do during an accident, going on to say “you’d been fine if you’d been drunk!” He wasn’t advocating drinking and driving, just pointing out that intoxicated individuals frequently walk away uninjured because they are so relaxed during accidents. Trying to “brace” for an impact can cause muscle and ligament injuries. So…. if you’re ever in a car accident and see it coming, try to relax! Much easier said than done!
I was sent to physical therapy (PT) shortly after my accident in Sept 2000. That was the usual protocol. They didn’t know at the time that physical therapy was the worst thing they could have done for me. Due to joint laxity, intense PT caused scar tissue to invade the medial branch nerve roots on both sides of my thoracic spine. Within a few weeks of beginning PT (Nov 2000) the pain was so bad that I begged God to kill me. If not for my kids I would have self-terminated. I just could not leave that kind of baggage for my kids to deal with. It frustrates my wife when I tell this story, because she thinks my love for her wasn’t enough for me to stick around. I actually thought I would have been doing her a favor. I had a significant amount of life insurance, she would have been a rich woman not tethered to an anchor of despair!
That was just the beginning of my first descent into hell. The pain only got worse from there. I am unable to adequately convey the intensity of that pain, no analogy does it justice. My pain remained oppressively intense until October 17, 2001. That was a crazy day! It’s a long story for another time, the short story is my physical pain was “survivable” from that point forward.
I had major surgery in August 2002 in an attempt to remove some of that scar tissue. It didn’t work. More physical therapy followed. In a December 2002 appointment with a new specialist, we were told “It’s time to realize this is permanent, adjust your life accordingly.”
I married my high school sweetheart. She was a stay at home mother to our four kids. I ran a business that I started in 1993. The accident almost destroyed all of this! My initial inability to deal with the results of my permanent pain almost destroyed everything I value in this life – my marriage, my relationship with my kids, my sanity. My wife and I have gone to a psychologist at least once a month since 2003. Counseling saved our marriage! It helped me to talk about things. It also helped me to know I was not the only one dealing with permanent pain. Living with permanent pain can be very isolating.
It took years for my doctors to determine PT was a mistake that likely made my injury permanent. I was bed ridden most of the first 4.5 years. We weren’t willing to give up looking for a treatment that would help me, so we chased every treatment option available starting in 2005. From April 2005 thru July 2013, I had 52 surgical procedures on my spine. The average recovery time was four weeks, I spent a total of four years just recovering from surgical procedures! I was all about trying new things! 27 of those surgical procedures were considered experimental. The primary risk for each of those was accidental cardiac arrest because they were working so closely to my heart. Fun stuff.
If it was legal, I tried it. If the treatment was considered experimental, I tried it. If a treatment or medicine was available in the United States, I tried it. If it worked in other countries but was not approved for use in this country, I tried that, too. I’ve tried just about everything.
I even had Botox injected into my thoracic muscles in 2013. Botox is extremely experimental to use like that! That was an awful experience, paralyzing the wrong muscles. Instead of calming my constant thoracic muscle spasms, it magnified the spasms so much it looked like someone was hitting me with an invisible baseball bat for three months. We refer to that event as the “Botox incident of 2013.” It ended my search for experimental treatments. I have learned things can always be worse!
I was a patient with a very large pain management group from 2002 thru 2013. I learned about a new test that would show how medications are metabolized in 2011, a Cytochrome P450 (CYP) genetic enzyme test. I asked about this test for two years and finally left this group in 2013 when they refused to order it. In addition to problems with certain medications, I woke up in the middle of a surgical procedure when I was supposed to be fully sedated. I felt genetic testing was appropriate. They still refused to order the test.
I found a new doctor in 2013. He ordered the CYP genetic testing at my first appointment. The test showed I don’t process many types of meds correctly, including pain medicine. As a result, he doubled my pain medicine! 90% of all medicines are processed through the liver’s enzyme system and metabolism issues are more common than the medical field realizes. Many doctors still don’t know about it yet! Mayo Clinic now orders CYP testing if a patient doesn’t have desired results after trying two antidepressants. Antidepressants didn’t help me. Some made my issues much worse. I had a terrible experience with the trial and error method regarding antidepressants. With the available CYP testing, I don’t think anyone should have to even try two! It is unnecessary and potentially dangerous.
If you’ve ever had negative issues with medications, they probably aren’t being processed correctly. I highly recommend Cytochrome P450 testing! It will tell you what medications work and what meds to avoid. This will cover many classes of medicine. My test identified medications that could accidentally kill me, a good thing to know! Make sure the test they order covers all available isozymes. Some labs only check three. At least 8 can be tested now. They are all important!
I received the most comprehensive pain management I ever had with that doctor from 2013 through 2015. In addition to identifying my genetic issues, he also treated other issues caused by out of control pain! I was with this doctor for two years. Those were the best two years I had during the first 18 years of living with constant permanent severe pain.
My state decided in 2015 that patients like me need to see a pain specialist. Because my doctor was only a primary care doctor, he could no longer treat me. Thanks to the changes in state rules, I lost this doctor in September 2015. Primary care doctors were no longer allowed to treat chronic pain patients. The state, in their great wisdom, decided I needed to see a pain specialist! It didn’t matter that I had been seeing an actual medical doctor at every monthly visit, or that he provided better comprehensive pain management than any specialist I had ever seen. The state said this great doctor wasn’t allowed to treat me anymore!
It took 7 months to find a pain specialist willing to treat me. Most weren’t taking new patients. When I did get in, the visits were with nurse practitioners. The “specialists” were too busy performing procedures to see new patients. I saw an actual MD once during this process.
Regardless of who I saw, they all wanted to decrease my medicine. They weren’t interested in the genetic test results! Most didn’t even understand the significance of the genetic testing and some had never heard of it! They also didn’t care that I was doing well on my medicine. It just wasn’t politically correct to prescribe as much medicine as I needed! I started having full blown panic attacks during that process.
I finally found a pain specialist willing to treat me in April 2016. That was another terrible experience. He wasn’t happy that I refused all invasive procedures. I already tried those options. Medication management was my best option and he wasn’t happy about it. The amount of medicine I required made him look bad to government agencies and he mentioned it every time I saw him. Fear makes you do terrible things, he feared the government. He decided he no longer wanted to treat me and dismissed me when I showed up to my March 27, 2018 appointment. It is just too much of a hassle to treat patients that require high dose opioids.
Chronic pain patients normally need two types of pain medicine. Long acting medicine provides continuous relief. Short acting covers pain that breaks through the long acting medicine. I didn’t see the treatment environment for chronic pain improving anytime soon, so I made the decision to stop my long acting medicine. I cut my remaining long acting medicine by 50% the day he dropped me and cut that amount by 50% again two weeks later. I had used long acting pain medicine successfully for 17 years. I tapered myself to zero in less than four weeks. The withdrawal process was horrendous. My pain returned with a vengeance. The depression was terrible.
One of our daughters got married April 21. I ended my long acting medicine on April 24, 2018 and started decreasing my short acting medicine. Another daughter got married June 9th. I stopped using my short acting medicine June 11th. I didn’t think stopping the short acting medicine would be more difficult than what I experienced when I quit my long acting medicine, but I could not have been more wrong!
The following 11 months were horrendous! While I expected the return of my physical pain. I did not anticipate the depths of despair I would encounter with the mental and emotional pain of stopping the medicine I had used for 17 years and the return of untreated physical pain. I had a full meltdown at one of our counseling appointments in July. It literally felt like someone was squeezing my brain! The depression and anxiety were overwhelming! For about 90 days, the anxiety and depression were so bad it was a moment by moment decision to continue living. It was really bad! My wife was seriously worried and afraid to leave me alone. I hate to say it, but suicide seemed like the best option during that time!
I started to worry the depression and anxiety would never go away! Death seemed like the only way out. My wife came home one day in September and was inconsolably upset because I didn’t respond when she was looking for me. I was in another room in our house and didn’t hear her calling for me. It nauseates me to think about just how close I was to suicide.
I lasted 5 months trying to go without any pain medicine and my physical, mental and emotional pain almost killed me. I had a disaster supply of pain medicine. I decided getting into my emergency supply was better than the disaster of death, so to get through Christmas I started using a very small amount of pain medicine every day. It helped my pain, but the biggest surprise was my emotional state stabilized. The constant depression and anxiety improved almost immediately. The severe depression and anxiety started lifting. I would have an episode of depression or anxiety (or both) every other day, then every third day. Each month was better than the last. I could make it three more months with my disaster supply.
I still had bad days, but nothing like it was before using the low dose pain medicine. Do you remember, from the original Star Trek series, when Spock would lose control of his emotions? It felt like that! I assume my emotional issues were caused by the chemical changes in my brain as the pain medicine worked its way out of my system. I am very thankful that the intensity and frequency of the episodes decreased significantly! I could usually tell when an episode was coming and prepare. The depression and anxiety started staying away in May.
You’ll be amazed at what you’ll consider doing when you reach the end of yourself. Suicide or illegal treatment were the only options available to me after my doctor dropped me in March 2018. It took a few months, but I did finally reach the point where I would consider ALL available treatment options… regardless of their legality.
One of my children was a flight attendant for a major airline at the time. I had the ability to go anywhere in the world for treatment. I actually considered going to Switzerland to try Heroin. I’m not joking. After researching options, Cannabis appeared to be the more convenient option.
After months of trying different types of Cannabis via different delivery methods, I found a combination that effectively gave my life back in late December of 2018. Cannabis didn’t completely take my pain away. I was aware of my constant pain, but it was the most manageable it had ever been. Cannabis was a better option for me than prescription pain medicine.
I don’t think people realize how bad depression and anxiety can be. I know I didn’t! There is no thinking your way out of deep depression. Logic is irrelevant. Hopelessness is a terrible thing! I have decided that severe anxiety and depression are worse than chronic physical pain. My physical pain was only 15 inches from my head, but at least I could get away from it mentally. There is no escape from severe anxiety and depression! It literally felt like a war happening in my head, a battle between physical me and mental me. I told my wife during a bad episode that we needed to remove the firearms from our house. I realized during a particularly bad depressive episode that I was losing the mental battle and was no longer in control of my emotions. I did not trust my actions and I was concerned that I wouldn’t be able to stop myself from self terminating during another bad episode. Very scary experience! I’ve been talking about it more lately, I’ve been surprised by how many people are struggling. I wish more people felt comfortable talking about depression and anxiety!
There were times I asked my wife to hug me and tell me “everything is going to be okay.” Whether she believed it or not, it helped me to hear her say it! It helped me to know new options were being developed. It helped me to know it was okay to focus on surviving the day and to not worry about tomorrow. Hope is a powerful tool!
I am a follower of Jesus Christ. I have a very non-American view of my faith now and what it means to be a “Christian.” Suffering incinerated a lot of assumptions I once held. I have a low opinion of the name-it-and-claim-it version of American Christianity that is widely practiced in our country. Well meaning American christians said incredibly hurtful things to us, usually when we desperately needed encouragement the most. While many fellow “christians” failed us, Jesus did not. What we’ve been through only strengthened our faith. There are real believers out there. I am thankful I know a few!
I only bring this up because it was a big decision to choose an illegal option. I considered myself a rule follower. No one should have to break the law or leave the state for relief! I am working to change these laws at a state and federal level. No one should be forced to make a decision between suicide and illegal treatment!
I am happy to have found Cannabis! It provided better pain overall pain relief with fewer side effects than any prescription option I had ever tried! I didn’t have to see a doctor once a month like I did the first 17 years and Cannabis didn’t cost $3,000+ a month like my prescription pain medicine did!
Cannabis helped my anxiety and depression. It has amazing anti-inflammatory properties. It helped me feel like eating. Perhaps most importantly, it helped me sleep. Good sleep helps me more than almost anything else. I didn’t sleep more than a few hours a night for 14 years. It got to the point I feared going to bed because I knew I wouldn’t sleep. I would stay up until 4 or 5am and not go to bed until I literally couldn’t stay up any longer. My doctor at the time (2013 – 2015, the best doc I ever had) sent me for a sleep study in 2014. The sleep doctor put me on a sleep aid and I’ve slept well since. That sleep aid is the only prescription I occasionally take now.
There is incredible freedom knowing I no longer have to rely on the modern medical machine for relief! Pain patients are currently being torn to pieces in that machine. It is government sanctioned torture, I’m thrilled to be free of it!
I am currently pretty angry about this situation! I replaced the equivalent of 480 mg of morphine a day, muscle relaxers and benzodiazepines with Cannabis! How is it possible that a plant – a literal weed – could provide this kind of relief and be unavailable to patients like me? How much quackery did I endure under the guise of “modern” medicine for 19 years?
I am dismayed at the treatment of chronic pain patients! The war on prescription opioids is only driving patients to seek illegal treatment options or suicide. The only other option many patients have is to go back to severe suffering. I am not suggesting you break the law. I can only tell you, at least for today, life beats death. Do what you have to do to find relief and don’t feel guilty about it!
I’ve lost faith in the medical community. I saw a doctor every 28 days for 17+ years, underwent every surgery they told me I needed, was drug tested almost every visit so they could make sure I wasn’t diverting my meds or using anything illegal. I played by their rules only to have the government treat me like a criminal for living with severe pain! I will never go back to pain management. I don’t particularly care to ever see a doctor again.
It took a full fifteen months to recover from my doctor dropping me in 2018. I cannot overstate the sheer hell of the withdrawal I went through. Cannabis was extremely helpful to me! It is not legal in my state. It should be. I am working to legalize those options. Options should be available to all of us! I will not go back to the suffering I’ve experienced.
I honestly did not expect to see 2019. I’m pretty dang happy to still be here! I wake up without an alarm and actually feel like getting out of bed now. I’m usually up 4:30am! If you know me, you know this is truly bizarre! I have never been a morning person!
This is the first day I have publicly discussed feeling better. I didn’t realize just how good “good” health was until I lost it! I do not know how long this relief will last. I can tell you I’m making up for lost time! I am enjoying life again. I have allowed myself to start thinking about the future and I have plans.
The 19th anniversary of my accident is six weeks away from today. I am working on writing this story and how this experience affected us as a family. I hope someone finds encouragement through our story, that would be the icing on the cake! It is a glorious thing to feel “good” again! I don’t take good days for granted anymore.
If you have ever prayed for me, Thank You! Please continue those prayers!
Everyday is a blessing!
Everyday is a bonus day!