This is an email I shared with friends and family earlier this week that pretty much sums up the story….
Hi everyone!
You’re receiving this update because somewhere along the way you’ve asked me to keep you posted on my progress. If the updates are annoying or jamming in boxes, just tell me. I hear that people with spots on their brains (or sparkles, as Traci likes to call them) don’t get offended easily when folks tell them they are tired of hearing about their situations. 
The other great thing about spots/sparkles is that they sometimes make you forget what you have told to whom, so some of this may or may not be new for you. Feel free to scan along and ignore what I may have already told you. And, please be patient with me if I forget what I’ve told you or repeat myself for awhile.
I have RR-MS (relapsing remitting multiple sclerosis). It’s actually very rare, something like only 400,000 people in the US have it (400,001 now). I highly recommend NOT Googling it — trust me. There are a few good sites out there, primarily the main MS Society site that gives not-so-scary information.
Basically, I have five or six lesions (and that’s the last time we’re using that word — that’s why we’re calling them spots/sparkles) on my brain and a pretty nasty sized one on my spinal cord (picture the right side of your neck at the base of where your brain attaches to your spine). Two of the spots on the brain are brand-new– just about two weeks old. The others have been there for awhile. The new ones are the ones that brought on the symptoms that I thought were carpal tunnel and as of Friday of last week, the vision issues. By Monday, I could barely see out of my right eye. (Thanks to Tracy Ferrier for her copious note taking during my debriefing with the neurologist Wednesday, or in my state of shock I might have left the hospital thinking I had prostate cancer, smile)!
Going forward, the neurologist says we need to find a new “normal”. Right now my symptoms are fully flared. This means that all the spots, on both the brain and spine, are lit up like Christmas trees. So, we can’t get a baseline of what the new normal is just yet. I’m on heavy doses of a liquid steroid, given by IV through Sunday (I’m actually giving it to myself at home, how cool)! This should help to minimize the activity of the symptoms that are hitting pretty hard now.
They’ve been using words like: normal/abnormal, good/bad, MS bad days, relapses, attacks, etc. All negative words and I don’t like them. So, my mom helped me pick some new ones. I will have Sunshine days (since that’s what Tommy calls me) and Moonlight days. Once I figure out what comprises each, you’ll all know.
Right now, officially I’m in the Moonlight, but today feels very sunny (maybe with a chance of clouds this afternoon and a shower by evening). A lot of my sight is coming back. I’ve actually retrained my right hand to type even with the numbness and I’ve only walked into two walls today (but it’s only 10 am). My aphasia (mixing up of words) is slowing down too. (Some funny stories have come out of that little problem, remind me to tell them to you).
I meet with my neurologist (she’s an MS specialist and right here in Erie!) on Friday. Then I’ll start injections (ok — we need a nice positive non-scary word to replace that one, too — I’m taking suggestions) next weekend. They’ll either be daily or weekly depending on the treatment course that’s decided. Tom and I go for training and I anticipate I’ll be picking him up off the floor for half of the time. I just hope the needle ends up in my leg and not in his! I’ll be taking them (The I-word) for the rest of my life, but there’s hope that someday they’ll be replaced with normal meds. I could go months and months with all Sunshine days before I hit Moonlight again. The injections are designed to (a) keep the spots/sparkles inactive and (b) stop new ones from growing.
I’m coming back to work on Monday and it’s likely I’ll still be in Moonlight mode. I even have my own personal chauffeur service for the next week or so. So, here’s what to expect. I look perfectly normal (well, for as far as that goes). I still will likely have some vision problems, so don’t think I’m winking at you — I have to close my right eye to see properly sometimes. I may bump into walls, and I tend to drop things like crazy (don’t let me carry your hot coffee). I sometimes struggle to find the right words, and sometimes mix words up. You can laugh and actually that makes it all better. I may have to rest for 10 or 15 minutes, probably in the afternoon. Thank goodness for those couches in my office. And, I’m doing my best to minimize typos in my work, so for something important leaving the office, I may need some extra sets of eyes.
What’s important to remember is with MS, it’s critical that I get back to a regular routine, work my brain as hard as ever (ok, education team girls, watch out!), get back to finishing my doctorate, and live life as best as possible whether it’s Sunny or Moon-like.
So many of you deserve some special thank you’s. Those will come later, privately.
Oh, and don’t be afraid to ask questions or to share this info with someone who I missed on the list!
Thanks everyone!
