Power over suffering
I have been uncharacteristically quiet on social media these last few moths. Grad school and a pandemic aside, it’s been a tough year pain-wise. Truth be told it’s been a very difficult few years worsening to the point of incapacitating moments.
I have felt in my body that something was wrong for ages, but no matter how I pressed I was brushed off and dismissed. Fibromyalgia is a broad sweeping umbrella for widespread unexplained pain and the treatments are all about managing and mitigating flare-ups.
Except things just got worse and worse and nothing helped anymore. Something felt wrong. I pressed and pushed and advocated only to be dismissed over and over. I couldn’t begin to imagine how I would manage as the years and decades progressed if the last one was anything to go by.
A year ago I sat across from a specialist who told me another version of what every other doctor had said tto me: This is just how fibromyalgia is unfortunately. He didn’t even bother to examine me. He sat across the room and said there was nothing he could do for me, that I should try yoga, lose weight and get a good therapist.
He suggested the pain “would resolve itself ” once I worked through any trauma I might still have from my past.
Well wasn’t this fun? Now I could add “It’s all in your head” to my disheartening list.
I sat in my car and cried.
Fast forward a year.
The pain is out of this world. I broke through the atmosphere before Besos billion dollar toy rocket could with my pain levels.
I was desperate and decided I needed to find a way to be heard, truly heard, and by someone who would actually listen. Anyone who knows anything will tell you the person to talk to when you need something done is a nurse.
I went through the backdoor so to speak and asked to see our NP who has been the only constant in the practice we’ve gone to for 20 years and poured my heart out in tears to her in that exam room. She listened, really listened, ordered blood work and an MRI to get a look inside and set up referrals.
Less than a week after my MRI I got the call. I was right. There was a reason for all the pain and it had been going on for a while. Acute advanced degenerative disc disease in multiple discs, and acute arthritis in my spine and into my hips.
So, NOT in my head.
I felt simultaneously vindicated and angry as hell. Years. Years of pain. Years of being ignored and told this was the best it was going to be and to try yoga, lose weight, get therapy, [insert diet/fitness/nutrition/guru fad of the month here].
Within a week I met with a wonderful doctor, a spine specialist and pain management specialist, who has assured me that the next decade will feel a hell of a lot better than the last one, that I may have a ways to go, but I will get there and I have a team at my back. And yes, I still have fibromyalgia but it wasn’t the whole story.
I finished off the semester and decided to take the summer off and resume in the Fall. It feels like all I do these days is sleep and find different positions to curl up around work, training, and home life. I manage a few tasks and then, WHAM! I’m down for the count.
Last Friday I had my first procedure on my spine and it went smoothly. Angry nerve endings still angry, another procedure to go in a few months.
Post op this morning went well even if I’m feeling frustrated. The doctor said worse pain was to be expected since the body doesn’t like having anything added to small spaces, even if it’s medication. It’s just the angry response and will quiet in time.
We often don’t have a lot of power when it comes to pain but we can have some power managing our suffering and I am so grateful for my family and friends and my pain management team. But I would also really like a vacation from this. I want blue green waters, salty air, soft sand and time to gentle my spirit and just breathe…..
#painmanagement #arthritis #degenerativediscdisease #fybromyalgia #strongwomen #warrior #fightlikeagirl #chronicillness #chronicpain #justbreathe