Saturday, March 26, 2016

This Week in My Life: Week 12 of 2016

The view from here:
mmm, grapefruit

awesome sunset the other night

kind of fun to watch the old clinic (they built a new one) being demolished.
my old workplace (the library) is in the background here.

when you get an avocado with a tiny pit, it feels like you won a prize.
nothing is worse than getting one with a enormous pit.
this one was a winner. tiny pit = more fleshy goodness to enjoy!

a favorite snack - strawberries and Nutella



What I made this week:

a set of origami elephant magnets with a customized gift card

A list of crappy things that happened this week:

1. I spilled a large cup of hot coffee mostly on my lap (which was not pleasant), but some got on my laptop as well. The keyboard is now fried. :( Luckily, I do have a work laptop that I hardly ever use, so that's how I'm typing this. Most of the programs I need and use regularly are on the other one, though, so I'm still doing what I can on there. (There is an assistive on-screen keyboard, where you can click on the letters. Helpful for when I need it, but it takes WAY too long to type out even a few words.) My techie bro (Hi, Garrett!) thinks I'll probably be able to replace the keyboard for only $30 or so. I'm hoping that's the case, and that nothing beyond the keyboard got damaged.

2. The car saga, conclusion: Spent another $433, bringing the grand total to just under $1,000. Seems to be working now. Not a happy camper about all of this, but trying to just let it go. 

3. Got my MRI results. They're not good. I'm working on getting copies of all my scans, but here is my artistic (ha!) rendering of one of the perspecives:

lots of lesions, some large, one really large
and this is just one area/perspective/slice
plenty more lesions elsewhere

At my scan a few months ago, in December, I had tons of new lesions and plenty of enhancing lesions. A few months later, and I have lots of new lesions, and even more enhancing ones. One lesion in particular is pretty enormous. On the radiologist's report, the conclusion was "Extensive progression of disease." That was pretty upsetting to read.

The conclusion is that the Aubagio is not doing anything for me (DUH). Back to Tysabri it is. Things were so, so bad back at the beginning of this MS ride, and Tysabri completely shut everything down. From 10 or so exacerbations a year to ZERO for over 7 years. There was a little bit of activity on my scans over the years while on Tysabri the first time, but not much. So I'm pretty anxious to start it up again and shut the disease down again. Hopefully I'll have my first infusion within the month.

My weakness is close to 100% back to normal now, but still not quite. And I'm still having a LOT of extra tingling and numbness in my legs, both hands, and my face. And my pain has been through the roof the past few days.

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