to do tasks as I figured out my new limits . I didn ’ t want to create habits that would have me leaning into the role of being sick even when I was feeling better . The process was frustrating .
Having my independence snatched away may have been the hardest for me . Early in life , I ’ d learned that if I waited on people to do activities with me , I risked missing out on experiencing life . I went where I wanted regardless of if I had someone to go with me . Lupus forced me into the opposite position of being dependent on people . The mix of medicines and my physical condition determined whether or not I could drive . If I couldn ’ t , I required someone to attend certain events with me . During those moments when I couldn ’ t get up and go , I ’ d get caught in a comparison matrix of my old life versus the new one . I had to stay away from social media ; because seeing people , living life in a way that I couldn ’ t was difficult .
The first few months after being diagnosed , I was in a physical and mental struggle . My mind required a project to focus on , one that didn ’ t center around my health or recovery . Publishing a second book became that something I could focus on instead of being sick . The effort led to me planning a book and panel titled The Good , Bad , and Ugly of Love , which created a special kind of energy that was good for my soul .
Somewhere between the first and fourth visit to the hospital , Lupus became a confidence killer . I literally didn ’ t trust my legs to hold me up . My hair texture was constantly changing and falling out in sections . I would swell from head to toe . Lips looked dry like the Sahara Desert . My skin appeared as if it had been dipped in white powder after I put on lotion . My mom used to say , “ If you don ’ t feel good at least look good .” Unfortunately , some of the time , describing me as “ hot mess ” would have been an understatement .
The one thing I couldn ’ t do is hide my sickness . The little energy I had was used to get my body out of bed and to work . It didn ’ t matter that I looked like something the cat had dragged in with every intention of dragging it back out . Many times , I was pushing the envelope to show up and be present in my life . Walking into a room with confidence when I was praying that I wouldn ’ t fade away was difficult . At one point , one of my doctors put me on a restriction that kept me from walking anywhere except the bathroom . I had to remind myself I was alive and tell myself to stop creating stories behind the looks I received from others . And also realized that some people who are in perfect health also struggle with confidence . My attention had to be on keeping one foot moving in front of the other . Those physical issues could bother me , but they couldn ’ t stop me from honoring my commitments .
Even today , I have to avoid triggers that put me in a negative state of mind when my condition is getting the best of me . Normally , I avoid looking at photos taken of me . Not that I don ’ t have physical issues to remind me , but something about seeing it in a photo throws me off my game . I also steer clear of people who repeatedly tell me to stay positive and want me to have this “ happy go lucky ” persona .
Interestingly enough , conversations with certain doctors had to be kept to a minimum . One of my doctors was determined to diagnose me as clinically depressed . I could not allow anyone to feed depression into my spirit . I had enough issues without adding that to the list . To say that visiting up to five doctors at any given time , getting needles stuck in my arm on a regular basis , and dealing with some type of physical ailment that sprang up every single day , didn ’ t on occasion get a little sad and depressing , would be a lie . But I truly believe it had , and has not , gotten to the point where it matched the doctor ’ s definition . I didn ’ t need anyone treating me for something I don ’ t have , especially when some of the drugs used to treat depression makes people suicidal .
The process of not allowing my illness to be an excuse has been a rocky road . Pushing myself too hard can be detrimental to my productivity . Strategy became key . I needed to be strategic in how I tackled my projects in order to not to cause problems with my health . Doing too much could have me in bed sick for days , or worse could send me to the hospital . One thing I did was assign days to do minimum work and to rest in order to have maximum productivity on other days . No waiting to the last minute to meet a deadline , starting earlier is always better . My issues are unpredictable . If my body shuts me down and I don ’ t get it done , I still have time to get it completed before the due dayte
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