Chronic Disease Sucks! as do most “wonder drugs” over time!

My name is Darlene, a baby-boomer, wife, stepmom, daughter and  retired healthcare exec and consultant to governments and corporations. I have been living with chronic pain since  the late sixties. My first surgery was at 16, followed by years of prescription meds and invasive treatments  for infertility and severe endometriosis. Following emergency hysterectomy  at 39, I was give  three more diagnoses :ITP, Idiothrombocytopenia, a genetic blood clotting disorder, cluster migraines and hypothyroidism.. This period of my life was difficult given the variety of specialists, my active life, and the blind alleys one goes down to get a confirmed diagnosis that can be treated effectively. Rollercoaster hormones are still ruling my life into my 60’s.

In my middle age, I was always physically active with jogging, aerobics and downhill skiing. That changed in 2005, when I shattered both my left wrist  and left ankle in one fall while jogging requiring surgery.  A diagnosis of osteopenia was made followed by MORE  prescription drugs. Interesting fact: the infertility meds in my twenties compounded by a family history of osteoporosis had escalated into a high risk for future fractures. I currently receive Prolia injections  to strengthen my bones (twice yearly at a regional infusion center). At 60 years of age, I suffered another fractured ankle and plantar fasciitis in both feet.

Five years ago, I began treatment for arthritis of my spine and a new diagnosis of “fibromyalgia” , a chronic disease that mystifies most doctors. My primary  and rheumatologist started a trial and error round of medications which included Celebrex, Gabapentin, and  Cymbalta. From 2016-18, I continued to deal with advanced chronic pain, and moderate-to-severe  degenerative disk disease. Again, I was treated conservatively with multiple series of spinal steroid injections and bilateral lumbar nerve ablations. I had positive results for 18 months, along with a new med called Tramadol and occasional stronger hydrocodone and oxy.  I received bio-mechanics therapy and slowly began to regain core strength enabling me to walk 2-3 miles daily and ride a bike.

The medications for pain management became a horror show along with all the side effects. at this time, Arizona had just legalized medical marijuana. I was exhausted, had very little energy, having fibro flares more frequently. I was too young to feel this damn old!  I informed my doctors that I wanted to wean or “taper’ off the pain meds as much as possible and begin using medical MJ to manage my pain. I successfully weaned off of all opioids, stopped the Gabapentin, and stopped Celebrex. I was able to half the dose of Cymbalta for the Fibro.  I have created a dosing regimen of medical grade marijuana (CBD/THC) that works for me. I use full spectrum CBD tincture and a CBD vape pen during the day, occasionally use a Vape with Sativa THC strain for more painful days, and use edibles with Indica THC for nite spasms, restless legs, and insomnia. I will elaborate in future posts!

In April of last year, I experienced excruciating pain that crippled me. I was unable to walk upright as the result of a herniated disc and multilevel lumbar spondylosis. My symptoms  included a scary reduced sensation in both extremities and a foot drop on my right side.  My pain was now a 12 on a scale of 1-10! My conservative options were exhausted, surgery was recommended. August 6, 2018, I underwent a TLIF ( Transforaminal Lumbar Interbody Fusion) surgical procedure. (Tiger Woods had  this done) , aka lumbar spinal fusion. My surgeon is a miracle worker!

While in the hospital for three days, I was not permitted to used medical marijuana to manage my pain. They gave me morphine followed by oxy instead with a two-week prescription for oxy when discharged. I took the opioids for two more days and decided I was NOT GOING DOWN THIS PATH AGAIN , so I quit them cold turkey! Can you believe it: three days in hospital and two days at home and I was already addicted! I experienced terrible nite sweats and withdrawal symptoms, but happily resumed my medical MJ to manage my pain, upping the dosing schedule and using a terpene-rich distillate of high potency Indica THC.

 I am now back to my usual doses of Medical MJ, no pain meds.  I walk 6000-10,000 steps per day and am fully independent without significant limitations.  I am not 100% pain-free, I don’t expect to be 100% pain-free but I have a very good quality of life as long as I keep moving, no sitting for long periods, routine stretches with core strengthening exercises and daily walks. 

Bottom line:

I am happy and envision my “third act” of life full of new adventures and opportunities. Keep life moving!

Advice for other pain warriors:

Become an “expert” and personal advocate for your multiple conditions which means educating your providers ( and your family) on your goals/expectations on what works and what doesn’t to manage your pain. Keep logs on medications and alternatives so you can coordinate your activities and dosing. Be firm in telling caregivers what works and what you want to avoid. Don’t rely solely on an individual provider’s plan of treatment; they are often not well informed ( or accepting) of alternative pain management approaches.

Become informed on alternatives and success stories for pain management especially with medical marijuana and CBD! Pursue experts in the field and treatment trends for specific diagnoses. Explore and engage with well-run patient support forums, but be careful! Some support groups can become negative circular pity parties.  No matter what, focus on you and just keep moving!