Life

Everyday is a bonus day!

Sunday August 11, 2019

I have felt “good” since Memorial Day 2019, ten weeks and six days ago.  I am just as surprised as you are! My version of “good” is not likely the same as yours.  I am not pain free, I do not expect to ever be pain free. I have, however, found a natural pain relief method that is the most effective pain management tool I’ve ever used.  More on that later.   

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.  I did not expect to see 2019. I was at peace with the finality of that thought a year ago. I have lived with severe permanent pain since 9/22/2000 and I was tired.  

My doctor notified me on March 27, 2018 that he would no longer be treating my permanent pain.  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’m married, we have four kids, I try to run a business that I started in 1993.  My pain 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 helps me to talk about things. It also helps me to know I’m 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 has effectively given me my life back!  I started feeling great on Memorial Day, 11 weeks ago tomorrow! I no longer require pain medicine. I am more aware of my constant pain, but it is the most manageable it has ever been.  I’ve done more and gotten more accomplished over the past 11 weeks than I have over the past 19 years combined!  

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 is only 15 inches from my head, but at least I can 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 consider myself an evangelical Christian.  Don’t judge me too harshly! I have a very non-American view of my faith 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.  Well meaning American christians have 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.  

I am happy to have found Cannabis!  It provides better pain management with fewer side effects than any option I’ve ever tried!  I don’t have to see a doctor once a month like I did the first 17 years! And it doesn’t cost $3,000+ a month like my pain medicine did!  

Let me be clear, Cannabis does not work as well as opioid pain medication for the treatment of severe pain.  It is incredibly helpful, but Cannabis is not a complete replacement for prescription pain medication. Some combination of the two would be most effective.  

Cannabis helps my anxiety and depression.  It has amazing anti-inflammatory properties.  It helps me feel like eating. Perhaps most importantly, it helps 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 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 have 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 – can 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 the last 19 years?

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 am dismayed at the treatment of chronic pain patients!  The war on 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 won’t do that. 

I’ve lost faith in the medical community.  I saw a pain management doctor every 28 days for 15 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 last year.  I cannot overstate the sheer hell of the withdrawal I went through. Cannabis has been extremely helpful to me!  It is not legal in my state. It should be. I am working to legalize those options! They 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 by 6am! 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 it’s 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!  

Everyday is a blessing!  Everyday is a bonus day!

If you have ever prayed for me, Thank You, Thank You, Thank You!!!  Please continue those prayers!!!

___________________

Contact Info:

findme@iknowpain.com

9 Comments

  • Angela

    You inspire me everyday! Living with chronic pain takes so much mental and physical strength. Everyday you make a million little decisions that others without chronic pain never think twice about. C.P. is debilitating and draining …..on finances, your family life, especially your spouse. You’re wife is an incredible woman! I know without her unconditional love and support that this story may not have had this positive ending. You are amazing! You made it! You did it! You are okay. You are okay. Thank you for fighting on behalf of chronic pain patients like myself. Cannabis is our bright future. Blessings my friend!

    • Shirley M

      Thank you for sharing your story, it’s not easy to let others see our weakness’s. I’m so glad MJ worked for you, I wish it had for me too. Sadly, it left me puking my toenails up, I was so insanely sick. Thankfully a friend sent me Kratom, it really does help so much. Sadly, since moving I can’t find mine!!
      Kratom works on the same receptors as opiates but it’s legal in the US, although some states are considering it illegal!! So anyone who tries it, check your state first!!
      Kratom is also good for those getting off opiates! I got mine from Blue Diamond Kratom, they may send you some out to try and at least see if it works before committing to anything.
      I have CRPS/RSD, spinal stenosis, and a myriad of other things going on with my body. Was told a year ago this week that my fnp was not going to refill my extremely small dose of pain meds because I’m bedbound I don’t deserve pain medication, they are only for “functional” people!! I was functional before they cut them the first time!! The way we are treated (untreated) is despicable, medical genocide!

      Praying for you and your family!

  • Tina F

    Thank you for writing this. My husband has been going through this hell for 20 years it has definitely put a toll on our marriage. He has had six back surgeries and has a titanium cage and six screws from his tailbone to his thoracic and its back.

    He is trying to wean himself off of his pain medication. He has successfully taken himself off of his extended release pain meds. He’s having a very tough time weaning off of the Breakthrough pain meds. Your story has helped me to slightly understand a little bit better the things he’s unable to tell me.

    Legalization is imperative to the health and stability of people in chronic pain. Otherwise as you said these pain clinics are useless and their pill Mills. We’ve got to do better. The choice shouldn’t be between illegal drugs and suicide when there is such a wonderful plant out there that can help with all this.

    I wish my husband could have a conversation with you. So he knows he is not the only one out there that is going through this or has gone through it. It always seems like he feels like he’s on this road by himself. Keep fighting they need your help ❤️

    • Freda

      My son just started making me Edibles with hash oil. My left hip down into my foot burns like hell fire 24/7 and the only thing stopping me from taking my life is a 6 month old Granddaughter. I am trying the hash oil because I think my pain doctor will take me off my drugs. I am doing another round of TMS for depression too. My blood pressure is so high even on drugs. The back numbers are over 100 all the time. They say I am a candidate for a stroke or heart attack. A lot of chronic pain patients are dying of these two things and seriously they can be prevented. Sad. The hash oil heightens my pain to some degree until I take enough of it and get enough THC in my system that it finally helps me to go to sleep. I don’t think the oil is coming from the right plants!! I am not in a state where it’s legal unless you have seizures. But, I have no other options. Street drugs can have fentanyl dusted or Incorporated in any drug. My son is going to sources in Colorado from people he knows. So, we hope to stay away from fentanyl or heroin. Very scary tho.

  • Jimmy

    I’ve cut down 25% off pain meds. My states mmj program is restrictive. So I get what I can. I’m trying to use it less then I’d like. But i take what i can. Hopefully and finally once and for all this state, Mn. Who cares where I’m at. Anyway Keep up the good work every one of you.

  • Karen T

    Your mom is a friend. You know what a champion she is fighting for chronic pain sufferers, and has shed many tears for you. You, and my Fl. friend finally have found relief and deservedly earned am soooo happy for both of you. My friend here doesn’t know what she is going to do, nothing works and she is about at her wits end. I have a friend in Pa, might be legal there. He is a retired, gung-ho Marine, walked around with a broken back for a year before that was diagnosed. Surgeries haven’t helped; think I will contact him. At one time, I know he wouldn’t try it, too proud, he may be past that by now. You finally have your life back and your family has you back. I don’t see Tn. ever passing this law. Bet if it affected our politicians or a family member it would be number one on top of those piled papers. Again, keep fighting for chronic pain sufferers; you sure speak from years of pain. Good luck, Karen

  • Scott

    First of all God bless you 🙏 after all that you have had to endure. My thoughts and prayers are with you and your family and I am so happy that you are in a better place now after enduring all you have had to. I am so thankful that you found some relief in the use of marijuana as I have been advocating it’s use as a viable treatment for chronic pain, depression and anxiety for years. I also have been suffering with chronic pain since having colar-rectal cancer back in 2001, this led to surgery which led to an intestinal infection which has abcessed and cannot be corrected by surgery due to location which is where I had radiation treatments and they say it will not heal properly. This led to sepsis and they ended up removing 1/2 of my lower left buttock muscle which leaves me sitting on scar tissue and raw bone. On top of that I injured my back while driving truck over the road before all this happened, so I was already dealing with intense pain. My point to all of this is they would treat me like a drug addict or seeker when trying to get any relief from this pain and I had been using marijuana to self treat myself since before I developed cancer. As you mentioned it doesn’t necessarily take away all your pain but it keeps your mind off the constant dwelling on it. I have since gotten a pain management Dr and am currently on opioids but with the “opioid epidemic” the amount I receive is not helping anymore and I live in ND where mm is legal but in the three years it has taken to get the program up and running we still have hardly any Dr’s that will sign off on the paperwork you need to get a card, besides it’s too expensive for people like me who are on disability….go figure!! So am stuck between a rock and a hard place give up my opioids and return to using the black market or continue pushing my luck and hoping I don’t get tested again, one more positive and I’m done. And I believe like you that a combination of both would be the best in my case. I know your depression, I have been to the edge….. suicide or not. I’m so tired of being sick and tired and not being able to use a natural substance to make it through the night and day. Ready to say what’s the frickin use anymore?

  • Debbie roso

    Thanks so much for sharing I can’t imagine what you’ve been through I’m so very happy that you’re getting relief I’m praying it becomes legal in texas I’m too chicken to try right now …. God bless you

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