All through the month of April, I had been in more pain than usual. I was trying to build up my muscles against the day my back would no longer carry me. Six years ago, I had contracted MRSA in a dirty OR. It liquefied my back.
Originally, I am a “Mesh Sister”, one of the first women who was implanted with transvaginal mesh in 2002. Over the years it did terrible damage to my female organs, and I am a mess.
For the first decade after mesh, our doctors did not believe us. They scoffed at our pain, they called us liars, drug seekers. I went to one doctor who said if I could stand a pelvic, there was no reason I couldn’t have sex. Really? I cried for days.
Then lawsuits started popping up, and with them, closed groups on Facebook of thousands and thousands of women who had been injured. For me, that is where it all started.
In 2012, there were only 4 doctors in the US who could successfully remove mesh. Your tissue grows through it. It hardens inside you and poisons your tissues. Early in 2013, I was lucky enough to find my doctor in Atlanta, Dr. Miklos, who took excellent care of me, removed most of the mesh, and did some reconstruction. Yet, I did not get better.
By September, I knew something else was wrong; I had an MRI and required a spinal fusion. Within 2 weeks, I had HA-MRSA, “an acceptable risk of surgery” that very nearly killed me.
I battled the infection for a year, having more surgeries, but every time, the infection came back and then the little hospital I was in sent me home to die, and my family took me to Emory in Atlanta.
I was way too sick to remember much, but I do know they saved my life in 2014.
It would be so nice, if when you are sick, all you have to do is concentrate on getting better, but the Opiate Epidemic has made that impossible for pain patients. We all know this. Most of us still play the game though and we get cheated. I wasn’t a game player and I was very afraid I was going have to pay for that decision.
I knew there was a lot of damage done to my body from the mesh and the MRSA, and I would spend the rest of my life in pain. I knew they had put one last ditch effort to save my back, and I was no longer a candidate for surgery. In July, 2015, I lost my COBRA. It was a year after that I was finally awarded Disability benefits. Due to circumstances beyond my control, I had to taper myself off all my pain medications. I couldn’t go to a pain clinic without insurance.
I did see a pain doctor once, but he got a false positive for THC in my urine screen, and refused to see me after that. The $1600 lab test they did prove I had done nothing wrong, but I thought I was black balled.
I researched my options, found kratom and CBD and made do. As time went on, I became less trustful of the Medical Community and what was happening to pain patients. I have severe PTSD from the pain I suffered, and I have declined all medical care for the last 5 years.
I rarely leave my house. I am very active in the kratom community the Chronic Pain Communities and the Global Mesh Alliance. But I stay home. It hurts too much to go out.
The week before Easter, it had gotten to the point I could no longer walk. I felt it was important to go get an X ray just to see what might be wrong.
I told my doctor it took an act of God to get me in his office. Obviously, I wasn’t too far off. The rods holding my fusion were broken.
There is no way to make you understand the terror that went through my soul as I looked at my X-Ray. I thought about hospitals who no longer use opiates, I thought of the horror stories in my closed groups of people who had been refused proper treatment. I thought of Pain Clinics, the CDC, the FDA, the guide lines of 2016, the suicides, and now I had to go back into that hell. I had chosen kratom and CBD, not the mainstream medical care. How were my panic attacks ever going to let me deal with this but I had no choice!
I called the surgeon who had done my surgery 5 years before. I told Dr. Refai’s nurse what had happened. I was still in shock, still thinking it was a mistake. That was Tuesday before Easter.
On Thursday I was admitted to Emory, just like that. All the sudden, there was nothing left to worry about.
My doctor popped his head in, said not to worry about a thing, they had this covered. He would do tests over the weekend, he would do surgery to replace the rods on Monday, and rebuild the parts that did not fuse in the beginning. He went through my back on Monday, then through the front the next Thursday, even though all the scar tissue of the mesh. These were my 29th and 30th surgeries.
They of course took my history; knew I had not seen a doctor in 5 years.
They did not berate my decisions of kratom and CBD. There was not one person who I came in contact with at Emory who was not helpful and kind. Most importantly, I was always given proper pain control, I was always treated with respect, and even my panic attacks, which got really bad at on point, were taken seriously. I was treated the way every person should be treated while ill. It made me believe in healthcare again. The day after the first surgery, I was up walking around with no nerve pain!
Thursday was just a little harder, yet I was able to graduate from PT and IT on Friday. I got home yesterday and I just had to share with you.
Emory has a commercial on its channels that comments on the technology of healthcare today. We have more advances now than we ever have, but it’s going to be up to the hospitals to bring technology and care to the people. The Government is not going to do it, and we need to fix the Healthcare system. It’s going to be up to us. This is a true Easter miracle.
For past National Pain Report stories by Judie Plumley, click here.