2018: The Year of Change

This is the first post on my new blog. After setting it up in the fall of 2017, I struggled with the content.  And then the Christmas holidays came which really slowed me down. So I’m now back to it. What should I write about?

Should I share my portfolio of graphic designs and branding work? Do I need to showcase my skills? Not really. Would it be for an audience or for me? As I write this, I’m pretty sure it would be for me. At least 15 years ago, I started a gratitude journal for a difficult trial in my life. I needed to write each day what I was thankful for. I only wrote for a month, but it was enough.  To this day, I still look back at that journal when I need hope. It inspires me to know God brought me through back then, so He can do it again. I’m still grateful for the stories, things and people I wrote about in that journal. My design portfolio would be similar to my dated gratitude journal. For the last 11 years, I’ve been the communications and web director for my church. Today, it takes me a little longer to come up with design ideas and many tweaks and breaks to get it right, but I enjoy it. It’s like therapy. And, I am told my work is pretty good.

Should I write about educational technology? I was thriving in an educational technology career when Myalgic Encephalomyelitis (a.k.a. chronic fatigue syndrome, post-viral syndrome, ME/CFS, etc.) and Fibromyalgia got in the way. I had made it my business to keep up with technological advancements and strategies in teaching and learning. For 30+ years, I worked with students, faculty, and staff. I loved what I did. I read anything and everything related to education and technology and my imagination would run rampant on solving problems. I worked with a great team. In fact, my former colleagues teased me about reading so much.  Nowadays, I seldom make an effort to learn about new and emerging technologies. In fact, I recently unfollowed many of the higher ed organizations and journals. It became too painful for me to read articles and watch threads in a world that I am no longer a part of.  It can be overwhelming. In August 2017, I left my job as an associate vice president for educational technology at a local college due to ME/CFS and Fibromalygia. It’s been five months; in edtech years, this is 5 years. The field is changing so quickly that you can’t sit out for too long. Will I ever return to this field? I’m not sure. Nevertheless, I still subscribe to a few education newsletters that are of interest, mostly because my oldest daughter is a high school English teacher. We have great discussions about innovative strategies, management, and the use of technology in the classroom. It keeps me relevant and my brain working. I tell myself that when she goes to the classroom, I go to the classroom.

Should I detail my new life with chronic illnesses?   I’ve always had hearing loss. Later in my 40s came osteoarthritis, carpal tunnel, IBS, and GERD. In my 50s, I was officially diagnosed with ME/CFS and Fibromyalgia. I’m absolutely certain I’ve had the latter two long before the others. Pain welcomes me in the morning, follows me all day long, and drives me crazy at night when I’m trying to fall asleep. And let’s not mention the muscle spasms and tingling/numbness in my hands and feet. I am exhausted most days so I plan my activities and shower days based on the spoon theory. At times, cognition is an issue especially when I’m tired. I see blue and say red and expect you to know what I mean. The right words just don’t come easy sometimes. Occasionally, I pause to spell simple words. And the worst of it is my gut sensitivity. I started the first 15 days of 2018 with bacterial gastroenteritis and a tinnitus spike. When I’m headed for a crash, my lymph nodes swell in my neck and it hurts to talk. My hearing has gotten worse.

So how is my new life at home? Not bad. I hear God’s voice without distractions. I pray and listen. I have a loving and supportive husband of 28 years and two amazing adult daughters. They adapt their schedules and activities to accommodate me. They are my unbelievable support team, much like Omar is to Jen in the soul-stirring documentary, Unrest, about love, perseverance, stigma, and ME/CFS, an invisible illness that I and many others have. I have daily chats with my mom, who is in another state. You name it, my mom and I are discussing it from hair to the good ‘old’ days to breaking news to remembrances of my younger (and only sibling) brother’s disappearance in 1989.  As a workaholic, my conversations before were always rushed as I commuted to work in the car. I’m now engaged with two organizations – #MEAction and HLAA – where I have discovered a powerful team of patient advocates and activists that support and fight for each other and those that can’t fight. We celebrate wins and vent about losses together. I am not alone.

Conclusion: After throwing my thoughts onto this first post, I realize there is no struggle. It’s a must that I share all three. This is my website; it’s all about me for me. I need to rock it. It’s important I share how blessed I am, in spite of chronic illness and forced retirement. Like many, my life has been filled with trials and triumphs. I need to share the good, bad, and ugly. But, my glass continues to overflow with the goodness from others. One day when I most need it, I hope to look back at my blog for inspiration, much like that dated gratitude journal. In the process, I pray I inspire someone else because we’ve all got something we’re dealing with.

*Please excuse any typos and grammatical errors I may have missed. A more experienced blogger recently told me to write when I feel like it and don’t stress out about mechanics. If you’re interested in being my proofreader, let me know.  I would also would like to hear from fellow spoonies, advocates, activists, and bloggers.

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