My pain began seven years ago in my head behind my eye. After years of chronic sinus infections, I had a pain I can only describe as incessant. At times it was unnerving, severe.
I remember moments when it would hit me if I moved a certain way and it would run up my neck into my head. It would put me into a panic, but would subside in ten minutes until the next attack. I went for months to doctors and dentists, had a horrific root canal that wasn’t needed. X-rays, a CT Scan…nothing helped and nobody could find anything.
One day I ended up in the ER from a medication that hit me the wrong way, and low and behold, a brain tumor! A benign meningioma, to be precise, that had infiltrated the brain and was butt up against the optic nerve and the carotid artery. Not huge, but big enough to be causing trouble. It was in a bad place that, with any more growth, could kill me or cause blindness.
Although the doctors told me over and over that brain tumors rarely cause pain, this one was probably sitting on nerves. They hoped that once it was removed, the pain would subside. I remember waking up in the recovery room and the first person they let me see was my Dad. I was 44 and I said to him, this $%#$ hurts!!! I never once in my life, except that moment, used those words in front of my parents.
All night that night, I watched the clock crying in pain with nothing more than aspirin and an angel of a nurse holding my hand for relief. Brain surgery isn’t supposed to hurt I was told, but mine did. This pain went untreated and I wasn’t listened to. The doctors minimized my complaints, making me feel weak like a drug addict. I have not been out of pain since.
I was sent home with a two-week supply of mild opiates, and for two years after that I fought for stronger pain medication. “It’s not supposed to hurt” I was told over and over again and denied medication to relieve the pain. I was finally referred to a top pain doc who offered me anti-seizure medications (they are SUPPOSED to work! why not me?), anti-depressants, and low-dose morphine. Standard fare. When that didn’t work, I began to be treated as if I was being bothersome. Again, a drug addict.
Finally, after two years of constant, debilitating pain in my head, I found my knight in shining armor – the king of my team, my current pain doctor. A caring man who listens and works with me to devise a holistic plan of action to cover all my needs. He sent me to a psychologist to help me deal with my post-traumatic stress syndrome (caused by the stress of the first two years of untreated pain), a physiologist to work on the muscles in my arms and neck that were in a constant tense state, a nutritionist to help me with the weight gain, etc. I also work with an acupuncturist and any other alternative modality I can find to help relieve the symptoms of a pain filled life.
Three years into the pain I had gained 40 lbs. and every bone in my body hurt. I began to experience extreme edema in my legs and feet, and was sent to numerous doctors to no avail. I was tested for Porphyria and had numerous painful tests for all sorts of conditions. I was finally diagnosed with stress-related fybromyalgia. I was told I was obese from eating too much and not enough exercise. I don’t sleep due to pain and am exhausted from pain medication. I suffer chronic constipation and I won’t date anyone because I can’t possibly imagine anyone wanting to deal with all of this. I just turned 50 with four almost grown children and I am fighting a battle EVERY DAY.
I talk to God as often as I can and I am at peace, for the most part, with this challenge. I feel there are people worse off than myself and am grateful that my children are half way grown so my responsibility to their daily needs aren’t as big anymore. Honestly, I don’t really know how long I will be able to live like this. But I have a grandchild on the way so the only alternative is to fight. I meditate, and medicate – prayer is a huge ally. Yesterday I had a birthday dinner for my youngest daughter, and as I was doing the dishes I could hear them playing cards, singing and laughing. I thought about how lucky I am to still be here – pain or no pain – and the joy I feel lights my way. That’s all anybody can hope for in this life. We all suffer in one way or another. Mine happens to be physical.
My prayer is that someday in the near future the great minds of this world will take pain seriously and find a cure for nerve damage and scar tissue along with all the other painful conditions that are robbing people like me from their lives. There are millions of women like me who have been, and continue to be, neglected by the medical profession. Over the years I have met some very mean doctors who made me feel bad about myself, but I also know some great healers and I continue to surround myself with them.