I was born in Freeport, New York, and grew up in Pittsburgh, which is where I live today. I am 57, and have three adult children who are all really successful. I am very proud of all of them, and I like to think that I had a little bit to do with their success. I have had a very good life. I have been blessed, but many illnesses have taken over my life.
I started having health issues in 2000. Five years earlier, I had a Lyme disease infection, which was very challenging. I continued to have health issues years later, and thought they were due to the Lyme infection. I came to realize that maybe there was something else causing my health problems.
When I was 28, I started having spine problems without any injury or accident. It affected my life, but not on a grand scale. I was still able to work and be a mother. The older I got, however, the more health issues I seemed to have. By 2005, I could no longer work due to chronic pain and many health problems. The Social Security Administration determined I was totally disabled in 2007. It was devastating because I was a very high functioning person, always moving and accomplishing something. At that time, I managed my pain with over-the-counter non-steroidal anti-inflammatory drugs (NSAIDs) and non-opioid medications until my condition worsened.
In 2012, the Tarlov Cysts I had in my sacral spinal canal became symptomatic. Tarlov Cysts, which develop off nerve roots, are aneurysms in the tissue of the spinal canal, filled with spinal fluid and nerve fibers. The cause of these cysts remains unknown, and there is no cure or effective treatment. My life since that moment has been turned upside down and will never be the same ever again. The pain was instant and intense, and no one in the medical community knew what to do for me. My primary care doctor referred me to a well known pain management specialist in the area. By the time I arrived for my appointment with the pain specialist, I was in very bad condition from the drive there. Being a passenger in a vehicle with this condition is very painful because bumps and vibrations intensify the pain. My husband had to carry me into the office, and I was in tears from pain. The pain doctor did not think that the cysts were the cause of my pain and offered me no help other than invasive procedures, which are considered contraindicative for my condition.
Since that time, I have been diagnosed with two other rare conditions and have had to travel out of state to consult with the few specialists with knowledge in these conditions. I have Arachnoiditis, a pain disorder caused by inflammation of the arachnoid layer of tissue that surrounds the spinal cord. I was also diagnosed with Elher’s Danlos syndrome (Hypermobile Type), a hereditary, genetic condition that is a malformation of the connective tissues, causing the skin to be fragile and the joints to be overly flexible and prone to subluxation and even dislocations – all of which cause severe, chronic pain.
Throughout having these illnesses, pain management has been incredibly difficult for me. The five pain doctors I have seen in the past six years only offered invasive procedures that can put my health at risk and are not recommended for a patient with my conditions. Every pain doctor only offered me steroid injections instead of pain medications. Specialists also recommended I have a spinal fusion because I have severe degenerative disc disease. I did not want to have surgery of any kind because I felt there was something else going on that had not been determined; I did not want to fix the wrong problem. I am thankful I never consented to surgery because, now that I am a patient with Arachnoiditis, I am not a candidate for any invasive procedures to the spine unless it could save my life.
Thankfully, through all of this, I have one doctor who has been willing to work with me and prescribe opioids and other medications to manage my pain. He will be retiring in a few years, and I am frightened to say the least. I have tried to find other doctors in preparation for his retirement, but haven’t found anyone in the last six years who will take over my pain care. Opioid medication is the only effective treatment available to me. I have had severe reactions to other types of pain medications in the past, and there are no other options for me. Practically overnight, I developed a severe reaction to any NSAID, even over-the-counter ones. I can’t take ibuprofen, Motrin, naproxen, or aspirin. I did use another non-opioid medication that gave me pain relief, but I had a reaction to that and suffered chronic hives for five months. I do use other methods to manage my symptoms as well. These include using a transcutaneous electrical nerve stimulation (TENS) unit, lidocaine patches, gel ice packs, a back brace, nutritional supplements, and aqua therapy.
In recent months, I have experienced extreme adversity and discrimination as a chronic pain patient from pharmacies and my pharmacy benefit provider. Prior to The Prescription Drug Monitoring Program and lawsuits against opioid manufacturers, I was an established chronic pain patient. Now recently, I was kicked to the curb by my pharmacy because they feel I am a liability for them due to increased attention from the DEA for opioid prescriptions. Until recently, I was unable to find a local pharmacy that would fill my prescription. It is a complicated mess!
There is a new crisis of discrimination against chronic pain patients. If nobody believes that, I am living proof. There are thousands of other chronic pain patients who are experiencing the same challenges. It’s not right. We didn’t do anything wrong and are being treated like criminals. We did not choose to have an illness or chronic pain. We have no hope for any cure. I am a member of two online support groups for my rare conditions. There are over 3,000 members between these two groups. Not one person has ever overdosed on their opioid medication. Lawmakers, benefit providers, and pharmacies are targeting the wrong people, including the doctors who are only trying to help patients like me function and have some quality of life. With few exceptions, legitimate, responsible chronic pain patients and their doctors are not the driving force behind the opioid epidemic.
This is why I am sharing my story. Everyday I push through the pain because I don’t want to miss out on life. I will continue fighting and advocating for chronic pain patients’ right to treatment without interference and over reach by those who do not have any medical experience or knowledge of chronic pain, who don’t have a license to practice medicine, or who have a personal agenda. At any moment, anyone can become a chronic pain patient through no fault of their own, just like me.