update

[Guest guest]

I've been mostly MIA for a while and wanted to give an update. As some of you

know, we got a wheelchair van last month that is adapted so that I can drive

again (after almost 4 years!). I've been enjoying being able to drive myself &

my kids to various appts, do my own grocery shopping again, etc. without have to

call people to see if it fits into their schedule

Last week we went on a family vacation - the first one as a family, as well as

the first with me in a wheelchair. It was marvelous I drove the entire time

(from IL to Michigan), and didn't have too many mishaps, aside from running into

something and breaking an arm on my powerchair

The hotel that we stayed at for the first part of the vacation was very

accessible, and the roll-in shower was so much easier to use than the shower at

my house! I've got a few ideas for my bathroom at home The bed & breakfast

that we stayed at for the remainder of the time was not wheelchair accessible,

but we made do with my manual chair and my husband manuevering me up & down the

steps. We went for a dune ride, took the kids to the beach, went fishing, took

a pontoon out on a lake, and more. There were a few things that I couldn't do -

for example my husband took the kids on a hike up the dunes, and they all went

swimming without me (I'm not supposed to swim with the suprapubic catheter), but

overall, we were able to find fun things to do that were either fully or

reasonably accessible to me!

My MS has been doing well lately. I'm done with the novantrone (chemo)

treatments for now while the progression has stabilized. I've been able to cut

my meds down to just 60mg of baclofen per day, my antibiotic (for the recurring

UTIs), and an occasional Norco for pain. I've noticed significantly more neck

and shoulder pain since I've been driving! Does anyone have any tips for that??

As soon as I felt it, I remembered how I would get it frequently when I used to

drive before my revision. The pain and soreness around my pelvic bolts comes

and goes a bit too. I see my surgeon at the end of the month for my 2-year

post-op check up. It's hard to believe that it's been that long already!

I hope that everyone has been doing well and that you're enjoying your summer!