Yes, I think I'm back. At least for a bit, if not longer. It's been a minute, but a very full and fulfilling one. For starters, we've left Charleston SC and now live in center city Philadelphia. An amazing journey in distance and our exterior world, but a wonderful one. Philly suits us both very well. Everything in my last post of 2020 is still true. But life is not the same in many ways.
My mother, who had Multiple Sclerosis, used to say that she was very healthy; she just happened to have MS. We always applauded her positivity. Since I last was here, I still applaud the sentiment, but also embrace it. Just before the pandemic, I was diagnosed with Ehlers Danlos Syndrome, a genetic disorder that embraces many conditions, but usually includes hypermobility, and connective tissue disorders. I have a couple of other associated medical issues sprinkled on my EDS sundae, but I also have an amazing team of medical professionals helping me travel on this new journey. And in this journey, I have been able to trace back through my family tree to see where that gene probably came from. I am the third generation in my family, that I can tell, who has had a hypermobility disorder. The other two generations are suspected, but went undiagnosed because EDS was not on medical radar at the time.
[ Side note :Oddly enough, I remember in Nursing School, the lecture about EDS. The instructor said we'd probably never see an EDS patient, and then went on to list the circus tricks they could do-- all of which I could do, too. But since it was genetic, and no one in my family had it, I just figured I was a klutzy freak.]
Anyhow all this to say that the summer of 2025 has been the summer I learned how to take care of myself in ways that medicine can't. It means giving myself time to rest (Chronic Fatigue is a part of EDS). To go on the walks we love, but in the summer heat always carry water, even if just walking in the city, wear a hat and sunscreen, and rest between every mile you walk, whether you feel tired or not. It's easier to avoid exhaustion than to recover from it. Take my word for it. Learn to be honest with yourself about how you feel: body, mind, movement, emotions. Talk with the people who support you. Find means of physical support, even if it's as simple as changing your phone case if it's too heavy or large to hold, or adding collagen into your daily diet. It's a journey; take it slow and be kind to yourself.
Anyhow, one of the things I have missed is writing, both on paper and on computer. Now the hand support and strength is improving, the mind is clearing (did I mention Brain Fog is a real thing). I want to try to reach deep and awaken my writing skills. It's time. I may not write much or regularly, but the wish to try hass reawakened. I have no idea of what the content will include -- probably some more on EDS, some book reviews beoynd "I liked it; nice cover" (Sorry LibraryThing and GoodReads. I'll do better now.) Also some life stuff. Philly is a whole new world.
Even if nobody reads this, I am glad to be doing it again. Journalling has always been a big part of my life and my blogs have always been more of a journal than anything else.
It's good to be back. Ive missed you.
bookczuk/Amy
