Where to begin?
I finally want to talk about this. Even if I really have no idea what my prognosis is, or how this will go for me in my upcoming days. A little over a month ago, I started battling what they think is either full-body Reactive or Psoriatic Arthritis. It all started a little under a week after I had a “stomach bug” that put me out for a couple of days. The diagnosis is still not definitive, and may not be for several months. But basically, I have this lovely hereditary gene called Human Leukocyte Antigen B27 (HLA-B27) that is linked to a slew of autoimmune disorders including Psoriasis (which I’ve had since I was a child,) as well as Ankylosing Spondylitis, Inflammatory Bowel Diseases like Crohn’s and Ulcerative Colitis, and Reactive Arthritis. That’s why they are not certain which I have. Due to me already having Psoriasis, and the fact that the symptoms and clinical manifestations are so similar, they’re not sure if it is Psoriatic Arthritis or Reactive Arthritis. That being said, this “Non-serous Polyarthralgia/Ankylosing Spondylitis, Un-specified” has affected nearly every joint in my body, from Jaw (TMJ’s) to Toes. Of course, since I’m an RN, this leaves me unable to perform any of my nursing duties at the moment, so I’m currently on medical leave with short-term disability.
To say that this has been life-changing is an understatement.
First off– I’ve become an information sponge!! This is both a positive and negative thing. Positive in the fact that I’m taking charge of my diagnosis and will have “a say” in the direction that my treatments will take. It’s also a positive that I have a clinical background as an RN. The negative is that I have a clinical background as an RN, and I sometimes know “too much” which can be terrifying and isn’t so great for anxiety. Even still, I’ve been constantly researching everything under the stars related to my possible diagnoses- From traditional treatment options (and their own negative side effects,) to alternative medicines and other holistic therapies. At the moment, I’m cornered into more severe traditional treatment therapies, but eventually I hope to fight this as holistically as possible through diet modification, exercise, and adjunct alternative therapies like cryotherapy, acupuncture, supplements, and herbs.
Then there’s the emotions. Lots and lots of emotions. Like, SO many. A lot of them coincide with the “5 Stages of Grief and Loss,” but I feel it’s not as straightforward with the 1-5 step process. I keep feeling like I’m jumping back and forth between the steps. From the 5 stages I’ve also experienced others outside of that small box– Sadness, Hopelessness, Anger, Determination, Acceptance, Anxiety, full circle to Hope. I’ve experienced them all. Despite most of them being negative emotions, I feel rather positive through this whole experience, and considering my history with anxiety bordering on depression, that’s saying something. Actually before this, I was at my “best” that I’ve been since 2011– no meds, just a simple supplement, finally feeling like I had my anxiety and life under control and heading in the direction that I wanted it to, all for it to change in an instant. Life really likes to give you a swift kick you in the shins, sometimes.
But! This whole process has humbled me and opened my eyes in many ways. First, I really, truly saw how much my Friends & Family (you know who you are) love for me. I’m still in awe how they have stepped forward and shown me through action and words how much they care for me. I’ve literally had someone with me every step of the way, nearly every single day, providing emotional support, company, and distraction. (Sidenote: Distraction plays such a tremendous role in pain relief– it’s amazing!) I’ll never be able to express the amount of gratitude that I want to express to these people, but I will carry with me their kindness and selflessness for the rest of my days. And even though I hope to never have to show them the same courtesy for a similar reason that they showed me, I hope I will be able to pay it forward and/or express my gratitude in other ways. So to you all, I cannot say “thank you,” enough. ❤
Second, I have learned that SO. MANY. PEOPLE. are fighting silent battles of their own. Day in and day out– and they are rocking life. I have a newfound respect for so many, and they have become my comrades in this battle. They’ve given me so much hope, strength, and determination to fight this, and I have so much newfound respect for so many. So- I’m empowered and determined, and ready to take-up arms with my fellow warriors to fight this. And I will not stop until I break this.
But– for now, I’m taking it day-by-day. One step and decision at a time. I’m trying not to let the uncertainty of the future overwhelm me, since we have no idea at this point how this will truly manifest down the line. Currently, am tapering my steroids, and I just began my immunosuppressive therapy on Enbrel. No improvements yet, but the doc says it could take 4 doses (1 month) to truly see a difference, especially since this is one of the more severe cases he said he’s come across. Updates to come.
For now I leave you here and with this “Thank You.”
Thank you for reading. Thank you for your compassion. Thank you for your kindness and selfless actions. I am truly blessed to have so many wonderful people helping me through this.
Until further updates, adieu.