Yesterday afternoon, my doctor called with results from the two hours I spent in the MRI tube on Monday. It’s not good news.
I have a 3.5 cm tumor on my sciatic nerve sheath. It’s possible this tumor is one of many spread throughout my nervous system. Inside my brain. The tumor is consistent with Neurofibromatosis type 2, the same disease that led to my father’s quadriplegia. His death. It’s also possible that the tumor on my right thigh, the ringing in my ears, my deteriorating mobility are all due to something else entirely. At this point, I don’t know. I’m just waiting to talk to a neurologist. That, and trying to exist with the least amount of pain as possible.
Pain.
It is actually my chief complaint. My pain has been so ubiquitous for so many years that it took a cleverly worded question from my Physical Therapist’s office for me to realize that I consider a day in which I am not actually incapacitated by pain a no-pain day. For me to realize that I haven’t had a no-pain day in over twenty years. Maybe over thirty.
My pain is a lightning bolt shooting through my entire right leg, down to my toes. Ice picks in my heel. Needles all along my foot. It’s the stab of numbness and never finding a comfortable position.
My doctor initially called it sciatica, but I just knew it as pain.
Pain is missing my family and friends because I can’t tolerate any kind of travel that requires sitting. It’s not working on any of my writing projects because I haven’t figured out the right combination of stand-sit-walk-ing desks to make it so I can write more than a whole paragraph of ow, ow, ow ow ow, ow ow ow ow owwwwww.
Ow.
It is why I bundled up my fear of a terrifying diagnosis and dragged myself to the doctor one more time despite my desire to live a life of ignorance, whether or not it is blissful. Which, you know. Like chronic pain could ever be bliss.
After my doctor ordered the imaging we needed to figure out the cause of my right leg lightning strikes, I asked about pain management. About dulling this hurt enough so I can sleep because sleep deprivation is a wicked fucking beast and I so rarely sleep through the night it’s almost a ticker-tape event when I do. I needed something more than just the ibuprofen and acetaminophen I’d been plowing through in order to just get my dishes washed and my laundry folded.
I needed something. I needed options.
And my doctor, who was at that point didn’t know about the tumor so was still treating me for sciatica and a possible bulging disc, looked at me straight in the face and told me that there is an opioid epidemic so she was not going to prescribe me anything. We’d get the imaging done and think about next steps, perhaps back surgery, but in the meantime have I tried ibuprofen?
Now, I love my doctor. She’s doing everything based on the most up-to-date information. She really does have my best interest at heart. I know that. But I also know that the most up-to-date information views chronic pain sufferers as drug seekers. As needing protection from our future addictions.
Well. I get that. But they’re protecting me in the exact wrong way.
I am not drug seeking; I am relief seeking. I don’t want drugs at all. What I want is to not have a tumor pressing on my sciatic nerve. What I want is to not to have a diagnosis. I want to be well. But hey lookit, I’ve got this here tumor causing relentless nerve pain so I’d like something to help me sleep, even if just for a few hours. Unfortunately, opioids might be my best shot at this kind of assistance.
Which is why President Obama’s proclamation on prescription opioid and heroin addiction cuts so deep and rings so hollow. Here I am trying to find a way to exist in a body with a literally faulty nervous system and I’m being told I need to be protected from the primary thing Western medicine has available for pain relief.
Which, fine. Of course I’m super glad to not be a drug addict. And for sure I don’t want to be a drug addict in the future. But addressing the crisis of opioid addiction without addressing the crisis of chronic pain actually increases the stigma for those of us merely trying to live without an undercurrent of hurting. I have chronic, debilitating pain and every single type of pain relief comes with risk. Long-term use of ibuprofen can lead to kidney damage. Acetaminophen? Liver failure. And neithe one of them really tackle the pain, anyway. So if my doctor is coached to not prescribe opioids because I might become a drug addict, well then. What are my actual options?
I’m glad we are seeking help for those in the grips of an opioid addiction. Truly. I’m glad for anything that lets a person live the best life they can. But not only are there many opioid patients who are not addicts, there are people for whom opioids are the best and maybe even the only option for managing pain. That is the crisis. That is the issue we need to address.
And until we do, a thousand proclamations on opioid abuse, a thousand weeks of addiction awareness, won’t do us any good.
image of lightning and sunset by Scotto Bear from North Beach, MD, via Wikimedia Commons
I am so sorry to read about this health struggle you’ve been dealing with and to hear about the constant pain you face. I hope you are given something for relief of this pain and I hope that you have some other options for improving this situation. Part of me wonders if your doctor would say the same thing to a male patient because my experience has been that doctors are prone to treat female patients like minors that need to be told what to do rather than as adults. If you were an NFL player complaining of pain I have no doubt something would be prescribed for you. I’ve suffered from chronic asthma for over 40 years. I work, raised kids, support my church, sing in the choir, help with my grandchild, but I can’t remember the last time breathing was effortless and it’s at times like that I realize I have this disease. This is my normal. So, I guess I want to say I understand what you are saying about your pain and I pray you find some relief. Aloha ke Akua.
Mahalo, my dear friend. I also have asthma, though it’s thankfully been well controlled for the past several years. I do know how grateful I am for that. Not being able to breathe is terrifying. I am so sorry you are struggling with that. I hope it improves.
*speechless pause*
*and another*
This was not the kind of update I was expecting, even if I did ask about your MRI pic. I had no idea you lived with so much pain. I really, REALLY, RRREEEAAALLLLLLYYY hope the neurologist has better news for you. Sending you much love and healing light—but, damn it, let’s get you some proper painkillers already. A million soft and fluffy hugs xo
To be honest, I’ve been ignoring my pain levels for years now because I know pain is the main symptom of NF and I didn’t want to even consider the possibility that my pain might be caused by it. But, now that I have this confirmed tumor, I have to be real with myself. No other option. The good news is now that I can’t ignore my pain, I can do whatever it takes to address it, whether or not my doctors are on board. (hooray for living in a legal marijuana state!)
I didn’t know you live with chronic physical pain. I can’t imagine what that is like. Lots of love to you, whatever that is worth.
Why has noone in authority addressed chronic pain while addressing opioid and other drug addiction? It’s so obvious, and these are not unintelligent people. They must not live with chronic pain.
Right?! I know that I personally do not like taking opioids because I don’t like the way they make me feel. My doctors and I are trying to find alternate medications and so far everything just makes me sleepy and I miss out on everything. It’s a shitty choice, honestly. I hope science can do better soon.