I had the opportunity to attend 3 separate lupus events this past week - putting me in contact with many lupites that I hadn't met before. We shared a lot about our experiences with the disease - our coping strategies, frustrations, needs - in addition to the many blessings we've experienced, like supportive family and friends, understanding co-workers, and competent, responsive doctors.
I know I have a lot to be thankful for, and not only because I'm living well, despite lupus. With my disease under control, there are so many little things that I no longer have to worry about. Here are just a few of the annoying considerations that I have to keep in mind when my disease is active - reminding me to maintain my current state of health and wellness - at all costs!
1) Medicines that require a plan: Many of my past medications have forced me to eat, drink, or rest (or NOT eat, drink or rest) at certain times...and when you're on more than one medication that has such requirements, it can become almost impossible to do any of the three! Thank goodness I'm not juggling any of the above - my present medications are streamlined and straight-forward - and I'm going to do everything I can to keep it that way.
2) Avoiding any and all sun exposure: This one was a real bear. I hated the stress and anxiety of finding a parking spot close enough to avoid unnecessary exposure when shopping, having to wear 3/4 or full length long sleeves, even on the hottest days of the year, or having to wear a hat with every outfit. Don't get me wrong - I still limit my sun time. But with my disease activity in check, my photosensitivity seems to have diminished significantly. I'm no longer worried that a few minutes in the sun will trigger a flare - and that's a big relief. I have to be careful, but not overly cautious. And when it comes to the limitations of a chronic illness, that's a big difference.
3) Choosing chewy: One of my least favorite joints to flare was my jaw. I hated having to plan what I was going to eat based upon what I could chew...or not chew. Tea, soup, bread...those were the easiest things to eat. A carrot stick or a granola bar? Forget about it! Remembering how much it hurt to chew way back then makes me grab for the crunchiest apple I can find today. Here's to a fully-functional set of choppers!
4) Always searching for an assisted pathway: I now know that on days when my joints were killing me - I should have used a cane. Instead, I hobbled around, grasping onto chairs, tables, doorways, handles, and anything else that would help ease my way. It was a royal pain (pardon the pun), and it's so nice not to even consider that getting from here to there might require a strategy.