Getting Hospiced

Holy cow getting hospice organized is an intense experience.  At the same time as my disease is progressing day by day we are seeing all sorts of folks trying to get my care organized.  There's lots of weeping and lots of processing and we're still catching up on the surrealness of it all.  It's hard....nearing impossible.

We have seen so many people I have lost count.  Thankfully, by and large they've been helpful and kind. The one I couldn't stand won't be back (not sure if she caught me in the wrong mood or what, but I can deal with most people- especially after years of teaching!  My advice to any hospice intake nurse - never talk to a newly signed up hospice patient about their chubby steroid face, suicide and dead patients when you are just meeting them - just be warm and supportive!).

Update on my condition...
I can't walk at all.  I'm bed or wheelchair bound.
I can't feel or move my legs.
I'm numb pretty much from my chest down.
I'm back to being fully deaf in my left ear.
So far the thinker is still good (thank goodness!)
My arms are weak and there is some numbness in my left arm (not new), but arms are still working.
My pain is well controlled.
My appetite is still good and I'm still enjoying food as always :).
I'm a little worried about my lungs, but I'm still breathin', just not kickin'!

Things are changing a little each day and not in the right direction, so who knows what tomorrow brings.  Fingers crossed it is ice cream, not more symptoms.

We have been treated to lots of visits from my family!  All my aunts have made it out here along with some uncles and even a cousin.  In some cases it had been years since we'd seen each other, so it has been really wonderful, and heartwarming to get a chance to catch up.

Keith and I and my mom are muddling through right now.  Things should get easier next week because we've hired some extra help to come in the morning to give Keith a bit of a respite.  They'll be someone here on the weekdays to help get me up and ready for the day, do some light chores and give Keith a chance to do something (get a break from this nightmare!).

On a happier note, thank you to everyone who has sent messages of support!  We're so lucky to have great friends- old, new, near and far.  I feel lucky to get to read these beautiful notes saying such nice things about me.

I really wish everyone had a chance to hear such amazing things about themselves, but geeze do I really have you all fooled!  I was a hard working teacher, who is amazingly lucky to have met the perfect and most wonderful man, watched too much garbage on the TV, liked to eat good food and could easily have turned into a crazy cat lady (thanks for keep a tight reign k).

To the local folks who have offered help, thank you!  It is often hard to know what we need, we're just trying to keep the wheels on the cart as it barrels down this very bumpy road.  Any emotional support is huge and any other help you can think of is appreciated- we probably won't know that we needed the help until after you do it!