By Stephanie King, Guest Columnist
Up until May of 2010, everything was pretty easy going as far as my health was concerned. I was a happily married 22-year old and mother of a sweet one-year old boy. Then one fateful afternoon all of that changed.
There was a bad storm that day but we had to pay bills. My family and I ended up hydroplaning off the road and crashing into trees.
Luckily, our son was unharmed and my husband, while it was bad, suffered nothing worse than a broken leg.
I had the worst of the injuries and needed surgery. I broke my right foot in three places and my back in five. One of those breaks was a compression burst fracture, which means that my vertebrae basically exploded from pressure.
Unfortunately, I also developed MRSA, a severe and dangerous bacterial infection. This meant packing the open, oozing wounds every day. Instead of getting better, the infection spread through my back and within a couple of months turned into sepsis. Two more surgeries and six months later, I was finally infection free.
A few years later, my pain was increasing due to degenerative disc disease and arthropathy, so my pain specialist started pushing epidural steroid injections. I was already on fentanyl and MS Contin, so I figured I would give it a shot. This would be the biggest mistake of my life.
I ended up having about ten injections. The last one caused extreme levels of pain and my body felt strange that night. I refused to get any more after that.
Not long afterwards, I began developing neurological pain that I wasn't used to. Sometimes it felt like warm water running down my legs. Sometimes it was stabbing and biting sensations. Sometimes it felt like my bones were snapping. I didn't make the connection between the epidural and the nerve pain. I assumed it was a pinched nerve, because my back was so messed up.
Then in the fall of 2016, my inner calves began to go numb. The numbness rapidly spread up my legs and into my groin. My GP admitted me into the hospital and I had an MRI done.
That day I heard the words I will never forget, the words that changed my life forever: Adhesive Arachnoiditis.
It was explained to me that this is a disease where scar tissue is engulfing spinal nerves, blocking the flow of spinal cord fluid because of inflammation of the arachnoid lining around the nerves.
The more I learned about Arachnoiditis, the more I realized I was doomed to a lifetime of unrelenting pain, a level of pain some doctors have compared to that of bone cancer. I learned of the possibility of paralysis. I learned how there is no cure, just medication to try to manage the disease symptoms and slow down its spread.
I was devastated but kept pushing on, ignoring the pain as much as possible.
Just over a year later, I learned something else. My birth control had failed. I was pregnant with our daughter. My pain specialist immediately dropped me. My obstetrician panicked and tried to get me in with another pain management doctor due to fear of a miscarriage.
I kept hearing how no one would see someone who was pregnant and not already an established patient at their practice. I was referred to a neurologist, but he told my doctor that there was nothing that he could give me that would be safe during pregnancy.
During my pregnancy, the Arachnoiditis symptoms increased tenfold. The burning in my feet and hands became unbearable. I'm one of the "lucky" Arachnoiditis patients who has scar tissue far enough up their spine to effect my arms and hands as well. I began jerking uncontrollably and developed tremors. I spent most of my pregnancy crying and screaming.
We have a beautiful daughter now! She is so sweet and smart! Unfortunately, my symptoms never subsided. I still don't have a pain management doctor. No pain specialist will see me.
I fear I was red flagged for doctor shopping, even though it was just my obstetrician trying to get me treatment. I have finally started seeing a neurologist but until he has reviewed all of my MRIs, no treatment will be given. I won't see him again for another month.
I live in never-ending pain. I rely on family a lot to help care for my children while my husband works. I have come to realize I have no good options at this point. I can continue on in pain and being a total burden to my family, just becoming more burdensome over time.
I could turn to marijuana but it is illegal in my state. My children could be taken away and I could go to prison. I could commit suicide but that would scar my children and further hurt the rest of my family. I am stuck.
There are times I pray for death. I pray for the body I once had. I pray I could be the mother and wife I once was. I pray for anything to make it stop, even for just a little while. I pray for a miracle.
Stephanie King lives in Alabama.
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The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.