Becoming a Lupus Warrior
Last updated: June 2023
I was practicing some self-care last summer when I started sweating and felt out of breath and passed out in the spa chair of the nail shop. I woke up to two women massaging my arms and giving me water to drink and candy in my mouth. I was so out of sorts and embarrassed and scared all at once.
My long road to diagnosis
I had been experiencing so much pain in my legs and swelling in my hands and face, and migraines that consumed my entire being. I had been to a neurologist who sent me to get two MRIs that found nothing wrong. The tizanidine he prescribed did nothing for me. I slept for hours on end during the day and we canceled our summer trip to Hawaii. It wasn't until I saw a rheumatologist after a year of various doctors and tests that were inconclusive that I started my journey with methotrexate and hydroxychloroquine that my life turned in a different direction. I had lupus and RA. My thyroid is also affected and I have non-alcoholic fatty liver disease, Vitamin D and B-12 deficiencies, and bonus I am in menopause. Recently I had a uterine biopsy done and I will have to have a full hysterectomy due to a previous HPV diagnosis.
Joining a community of warriors
After 8 months on my meds and looking back at all that I was feeling for so long I can state that my mind and my heart are prevailing with positivity. I sit here writing with a migraine that started 12 hours ago. I am at work on a daily basis where I am a middle school counselor for the last 28 years. I am so encouraged by joining this community of warriors. I read your stories and appreciate all that you share with the rest of us and I value that I am not alone. I have an autistic 23-year-old son who is so empathetic and supports me as much as I support him. I have a beautiful daughter who is weeks away from graduating college which she completed in 3 years in the midst of a pandemic wow!!! And next month I am marrying a wonderful gentleman I met 8 years ago who has made me feel strong a valuable. I write in my gratitude journal all that makes me feel like I can get through all of this and more. And when I am fatigued and exhausted I simply acknowledge my limitations and give my body the respect it deserves.
My new life is a bunch of daily readjustments. I am a lifelong planner but Lupus and RA have humbled me to be more flexible. I am struggling with it but I am a lifelong learner. I love being a lupus warrior. I feel strong even when I acknowledge my weaknesses.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?