Quality of life. At age 45, most of us take those words—that concept—in our own lives, for granted. Sure, as we reach middle age, we begin to notice things like grey hairs, sore backs, slower metabolisms, and other symptoms pop up, but for the most part, our quality of life doesn’t suffer too much. We can still walk, talk, hear, see, go to the gym, work, enjoy time with our family and friends, go to the movies and concerts, eat whatever food we want. Life is fine.
For myself, the last three years had been lacking quality of life. I had not been able to eat at all, as I had trouble swallowing, and the food that hit my stomach caused intense pain immediately. My lowest weight was 87 pounds. I had seen countless specialists after being on lengthy wait lists, enduring painful procedures and paying for pricey scans (scams—avoid Prenuvo!). I had been abused and traumatized in different ERs, taken so many tests and labs, my results dismissed and diminished, my symptoms ignored. At one point I was going blind, deaf, suffering from aphasia, couldn’t think. My face and neck were numb. I was having tonic clonic seizures. The pain was beyond a 10 on the pain scale. I was using a cane and mobility scooter because I could barely walk.
Because my parents had been exposed to Agent Orange in Vietnam, my symptoms were common with my Vietnam Vets children cohort. I did a lot of research on their illnesses in order to figure out what approach to take with my symptoms. I knew that the searing pain in my pelvis felt like my pancreas burning. Sure enough, one of the tests from the ER visit showed pancreatitis. Yet I was gaslit when I brought this up.
Luckily I have two girlfriends whose fathers were also in Vietnam. We help each other with our illnesses and symptoms. One girlfriend, also named Brandy, is fortunate enough to be part of an extensive genetics study through the University of Colorado, as well as has an amazing Ehlers Danlos (EDS) physiatrist. She often guides me on how to approach my practitioners effectively. She suggested that I ask my pain doctor to refer me to a physiatrist to help me with pelvic pain associated with EDS.
I did some research and found Dr. Heather Underwood, here in Vancouver, a physiatrist who knows about EDS! I asked my pain doctor about her, and he knew her as well and was happy to make the referral. However, it would be a long wait—9 months. It was well worth it.
Meanwhile, I was still struggling with debilitating weight loss, pain, and other inexplicable symptoms caused by autoimmune inflammation. In May, one of my classmates from the Asian American Studies Master’s program from UCLA 20 years ago, who had become a nurse practitioner, reached out to me. He has been following my health story like many others and wanted to offer his help. We arranged a Zoom call to discuss my medical history and health goals. First, as a nurse practitioner himself, he expressed disappointment at how I’ve been neglected and dismissed, as I told him some particulars. Then, after I described my symptoms and diagnoses, he suggested I try low-dose prednisone (5 mg) for a month to bring down the autoimmune inflammation, stimulate appetite so I could gain more than the 92 pounds I was at and keep it on (I had been stuck there for two years), gain more energy, and see where that took me. I happened to have a bottle of prednisone from when I began Accutane but didn’t take any of it.
After a couple weeks, I gained 8 pounds, I walked a mile for the first time in three years, I had less pain and more energy. I started having quality of life! My sleep wasn’t affected since I took it first thing in the morning, and it was such a low dose.
Knowing that steroids aren’t something to be messed with, I started researching side effects. Bone loss is the main one, and since I have osteoporosis I have to watch out for that. Also, it affects blood sugar, and I’m pre-diabetic. But I get tested for these things regularly anyway. What I’ve weighed is the fact that I now have Quality of Life—something that I’d been lacking for years!
The benefits continued increasing. I was responsible and spoke with all my doctors and specialists about prednisone. Finally after much consideration, my pain doctor gave me a three-month prescription.
I now weigh 110 pounds, walk 3 miles a day, and am trying to get a full-time job. I am digging our house out from the pandemic rubble and reorganizing it completely. Now that the children are much bigger, I’ve sifted through their stuff and donated 20 large garbage bags of clothes, toys, and miscellany to Big Brothers. I’m planning another pick up soon.
I can’t say I’m getting that much sleep, as I’m always thinking of something I want to do. I’m not taking this rebirth for granted. Every waking moment is spent on reading, writing, watching movies and tv with my family, going out with friends, snuggling with my boo, feeling great in my new skin. There’s so much living to do! I don’t want to miss a single moment.
Brandy Lien Worrall-Soriano 