New Year, New Struggles
Dealing with disappointment, and looking inward for strength and acceptance
2021 is finally behind us all. With the new year, after having had my spinal tap (promised to be the last test I would need for a diagnosis), I found myself hopeful on January first. While it’s just another day, this year felt different as it arrived. I had had all of my testing done, I was ready to receive the results of my spinal tap, and potentially finally find an answer to my medical problems. The day I had my appointment with my rheumatologist to go over the results, I was in so much pain I found myself completely unable to leave my home. I could barely stand. I called the office and asked for a phone appointment.
When the doctor called, I could almost hear relief in his voice. I mistook that as a good sign, thinking he would have some sort of lead on a diagnosis. Unfortunately, that note of relief was apparently because he did not have to look me in the eye and tell me that the spinal tap showed nothing of significant importance. There was no bacteria in my spinal fluid, my red and white blood cells were what they should be, and every other test that was ordered either came back as totally normal, or just slightly off kilter, but nothing jumped out enough to make an informed diagnosis. I was in my bed, listening to my doctor explain that he was very sorry, but he had no idea why I was still having these symptoms.
As a refresher, I have been experiencing multiple seizures almost every day, my right leg still does not work (there has been some improvement there - I can now lift my heel an inch or two), my hips, lower back, and now upper back are almost always in excruciating pain, controlled by painkillers and as much weed as I can physically smoke. I still have some sort of movement disorder, which is causing my body to jerk violently, seemingly at random, most severely at night when I am trying to fall asleep.
On the mental side, my anxiety has been out of control, despite the many medications I’ve been prescribed. I have trouble sleeping almost every night. Most nights I cannot sleep at all when it’s dark outside, and I am finding myself fighting sleep so I can rest in the forgiving light of day, where everything is a lot less scary. Anyone who has experienced paralyzed dreams, or night terrors, can certainly relate to that, I am sure. And due to all of this still going on, since August, plus the financial strain of being unemployed, and unemployable, the delays for disability benefits (applied for in August), and the worry I feel constantly about why this is happening to me, I am experiencing more depression and anxiety than ever.
Some days I cannot bring myself to get out of bed. Some days I sleep for 18 hours. Some days, usually after a few sleepless nights in a row, I am so on edge I feel as though I’m about to crack a tooth from clenching my jaw, nervous energy radiating off my body in waves. Any small sound makes me jump out of my skin. Any slight inconvenience will ruin my entire day, or even week, because I have so little energy left to deal with life’s small disappointments.
With this phone appointment, my world came crashing down on me, again. There are no other tests to be done. None of my medical team has any idea why this is happening. And now, right on the cusp of the new year, I must come to terms with the fact that I may never have any answers. I might suffer these symptoms for the rest of my life. Just the thought makes me want to hurl myself off a bridge. I honestly do not know if I am strong enough to battle this invisible monster forever.
On the other hand, I have found myself looking for reasons to appreciate what I have, and, more importantly, who I have. I simply do not know what I would do without my rock solid support system. On days when I cannot move, cannot eat, cannot even sip water, someone is there to pick up the pieces around me. I cannot imagine what this would be like without them. A silver lining surrounding this goddamn mess is that I have finally learned who is in my life for a reason, and who I can really count on. I have lost friends, and I have reconnected with old friends. My wonderful partner is still standing by my side, accompanying me to every appointment, and listening to me while I vent and cry and spit fire and smoke. My brother, the only family I have, has been standing by my side throughout this entire ordeal as well. I can honestly say that no matter what happens, I know I have people around me that I can count on.
This update is not what I wished I could share. It’s a rambling mess of disappointment, frustration, and even envy of others, who are able to walk, work, and live their lives. But if I’ve learned anything over the past six or so months, it’s that there is always something positive to focus on. No diagnosis? No problem, my best friend and I will watch Disney movies and eat peanut butter m&ms by the handful. I will forget my woes for that night. Seizures all day, and no actual time during the day where I feel lucid and productive? No problem, my partner comes home and makes sure that I’ve eaten that day, had some water, and did not forget to take my medication. In those moments I feel the support and the love coming from him, and I know, without a doubt, that it is real.
While most of my life is certainly not what I expected it to be at the age of 30, at least I have learned some incredible coping mechanisms, I’ve deepened my resilience, and empathy. I have met and spoken to countless people on the Internet who have either experienced something similar, or a loved one has, and in those moments, I feel the power of true human connection. Everyone out there who I am referring to, you know who you are, and I want each and every one of you to know that I couldn’t do this without you.
As always, I humbly ask for anyone reading this to share my fundraiser. I have been barely scraping by for months, and every little bit is not only helpful, but truly, and deeply, appreciated. For those of you who have donated and shared, I thank you from the bottom of my heart. https://gofund.me/3f37b4fe. And, as always, anyone reading this, I wish you happiness and good health. Even though I find myself disappointed and frustrated, and I may have to live like this for the rest of my life, I have learned to appreciate the parts of my body that are not failing. My heart and lungs remain strong. My physical strength is being nurtured by hours and hours of yoga, and the occasional trip to the gym, when I am able to walk comfortably enough with my cane or walker. These are the things I wish to focus on in 2022.
With love,
xoxo Sara