Moving the goalposts
First plasmaphoresis done, yesterday afternoon: probably 4 to go. Gonna be a while before the symptoms plateau, though, let alone reverse. Scared the crap out of everyone with what seemed like a TIA right after plasmaphoresis finished: half my face went slack and non-responsive, but then recovered, mostly, after 1.5 hours. Earned me a trip back to the MRI tube (“not the tube! I’ll behave this time, I swear!”) where they found no particular evidence of a stroke. So that’s unnerving, and might mean they hold off on the next pp session until they can figure out what happened.
Tried walking with a walker yesterday pm, which I could barely manage. Knees kept threatening to go out, even with firm support from behind and the walker ahead. The pt guy said he guessed I’d be looking at 10-12 days of in-patient rehab once I started recovering noticably. The date of my release keeps slipping farther out, day by day.
Sleep continues to be a cruel joke. The vented man to my right has his tv on all night, alarms going off all the time, and even with earplugs (which take me minutes to get into my ears, given my limited strength) and my sleep mask, the sound and light seeps through. Woke up twice to pee, three times to get my bloodpressure/temp taken.
On the bright side: my amazing friends and family. Bill, who’s loaned me his very-beloved Kindle. The string of visitors I’ve had and will have over the week. The understanding of said visitors when I’m tired. The astounding love that keeps streaming in via calls and email. The knowledge, remote though it is at times, that there will be an end to this, someday. My new roommate across the room, who also seems to have Guillain-Barré and with whom i’ve been comparing symptoms. John and Mike, who carried me to the bathroom, yesterday.
And Kate, without whom none of this would count for anything.
They may keep moving the goalposts, but at least there are still goalposts to move. Thank god.
December 2nd, 2008 at 9:05 am
Dear Adam and Kate,
Just got the news about your recent challenges. So helpful to have your website to see that the real Adam is still there, perhaps trapped in a tasteless hospital gown with a few additional bells and whistles, but they can’t disguise the wicked twinkle in your eye, knowing that you are wearing the classic french modest front and ever-daring back designer from hell gown and looking dashing at that.
Adam and Kate – please know that as those goal posts keep shifting, you need to know that all of the Dartmouth crews thoughts, prayers and good wishes. This is a journey that no one should have to face.
Kate – I can not imagine how it feels to be on the other side of the bed. However, Adam is lucky to have your know-how and spunk to help him along the way. You are his navigator and his keel. And we are yours if you need someone to talk to.
Tiresome quote but seems to fit.
Be well – do good work (your job is to get better) – and stay in touch.
December 2nd, 2008 at 3:46 pm
Adam and Kate – just want you to know I’m thinking of you and sending healing vibes your way. Its so very hard to be helpless and dependent on others for so much….it’s a humbling experience and one that tends to transform. Been there, done that and don’t want to do it again but I wouldn’t give up all that I learned through living it. This is a little detour, Adam, and Kate, you will be his guide on this unwanted and unexpected journey. Kate – we are still yours and remember to lean on us when you need us. We love you.
best,
Wendy McKenney