I talk a lot about my experiences being a disabled occultist and business owner, but I don't think I've ever shared my story. I think a lot about the person that I once was before the chronic pain and illnesses and I think about what I’ve lost in those years and the person that I once was what is the most profound loss of all. I was a fun party girl and nothing stopped me. I had a fun life and I’ve experienced a lot of amazing things, but as my pain got worse and worse over the years and I started losing parts of who I was and they are in a constant flux defining who I am now.
My chronic pain originally started in my hips with a torn labrum and mild hip dysplasia around 2011 and from there it’s just been a slow decline originally it was just hip pain but by about 2015-2016 I started realizing that there was something else underlying it all so one day I sat in my office and wrote down all of the random symptoms and things that I experience regularly not just like 'oh I broke my toe at one time.' It was the things that I was constantly experiencing or would have flares. I ended up with a list with about 30+ bullet points on it and it still took me almost another 10 years to get diagnosed and I’m still in the process of stabilizing treatments and have been for the past two years.
In 2016, II had been unemployed for a little over a year that it was clear that something was wrong. I was almost 41 and already struggling with bouts of peripheral neuropathy and what seemed like a laundry list of random symptoms from that 30+ line items. Outside of that I have had hip issues going back to 2011 I think. Those were treated with yearly cortisone shots and I was mostly okay. This was different. I couldn’t point to any one thing until a friend suggested that my issues sounded similar to multiple sclerosis. I got an MRI of the brain. Despite my list of maladies, there were no lesions on the brain so I did not have MS. Clearly nothing is wrong with me, right? Back to the drawing board and by which I mean - its all in my head and I am just a crazy hypochondriac, right?
I got distracted with getting divorced and re-establishing my life again. I was still in pain and having weird flares of joint pain and decreased mobility. I still was getting my hip injections and the neuropathy subsided in my hands even though I would have occasional flares over the following years. I got some treatment for spinal issues in 2022 which was costly and ultimately did not alleviate the pain. During that time, when I would have flares I would go back to the drawing board of trying to figure out what was wrong with me. It wasn't Ehlers Danlos. It wasn't Fibro Myalgia. It was something, but no one at Penn Medicine seemed to care or be bothered to figure it out. I fell through the cracks and gave up until I after I left Philadelphia in 2023. From 2020-23, I was pretty much a shut in, and just working through the pain. I started to suspect that I may have Rheumatoid Arthritis because I remembered my paternal grandmother and maternal grandfather both had it.
After I moved back to my hometown, I found new doctors, and within a very short amount of time and a myriad of tests and appointments, I was diagnosed with psoriatic arthritis which is what targets my joints causes pain, stiffness, and inflammation and generalized chronic pain. Additionally, I have other comorbidities including some lumbar spine issues, sleep apnea, AuDHD, C-PTSD, various vitamin deficiencies, hypertension and mild calcification of the coronary artery, and I was just diagnosed with Type II Diabetes last week. Diabetes is genetic and I had been skating in and out of pre-diabetic range since 2018. I suspect all the cortisone injections and prednisone pushed me over the threshold so now I am on Ozempic. And I am in perimenopause to add insult to injury!
I’ve always been a moody person with a keen sense of humor and a sharp tongue and even sharper wit, but the pain takes something from you that’s inevitable. I was quicker to anger. I was quicker to lose my patience. I just write people off because I don’t have the spoons nor emotional bandwidth. I realize this because as I’m adjusting to being on opioids and a few other medication changes right now and I see her again -- I see that person that I once was she’s still there she’s just been buried and kept trying to carry the weight of so much pain for so long and I want her to be free. She’s been held down for for too long so the person that I once was is the person that I am is the person that I am becoming because it’s the person I’ve always. The pain flare is starting to subside along with the excruciating neuropathic pain. Here’s to hoping that I can get the pain managed in a sustainable and on going way. It's always going to be there and things will change over time. For now, I take things one day at a time.