Monday, March 23, 2015

The Quarantine Chronicles

 But first, and way more importantly, this little girl turned one last month!!

She was thoroughly delighted (as were we all) with the  caramel cream cake provided by Grandma Trudy. Who also provided the meal.
As lent had just begun two days previously, a Fi(st) day was a welcome reprieve from our onerous Lenten observations. I am still working on trying to get back up to my prepregnancy weight and was directed to not give up anything which contained calories. Or fat. Or pretty much anything. Fi is a major calorie consumer (those thighs don't some easily) so until she stops nursing I'm pretty resigned to wearing Audrey's hand-me-downs and eating like a fatted calf. And then eating the fatted calf for dessert. It's rough having such a freaky metabolism. Know what it's like being cold and hungry all the time? Take  me out to  lunch and I'll tell you all about it.
We all enjoyed the nice party. And then a week after the festivities, a nasty cold descended on the house and we've been shut-ins since. It hit some of us harder than others. Thankfully the little ones had a light version and I was mostly unscathed and got to play Florence Nightingale for the duration of the plague. I didn't have to do any amputations, which was a relief, mostly just keep up the feeding and medicating of the invalids. Which I was able to do because our supplier (aka Grandma Trudy) left a huge cache of goods on our porch. Shane and the four big kids were hugely scathed and missed weeks of work and schooling.
This week  I'm hoping we can transition from  the land of the not-dead-yet to the living. Or, in my case, the gimpy-but-still-not-dead-yet crowd. Which seems to be the new normal. At least for  me.
A few weeks ago, in addition to the plague fairies, I got a visit from the Frankenstein fairy. Which left me with rubberbands in varying lengths and elasticities wrapped around my legs. Which were turned into ice, then stone, then wood.  At least that is how they feel to me. Shane assures me it doesn't look that way. Though I have not tried running or anything that requires quick foot work. Because, let's not add injury to insult.
I emailed my neurologist, which is a new feature the clinic has set up, which is awesome but also surprising that it is 2015 and this is new feature. She offered a course of steroids, and for the first time in 24 years, I said I'd consider it. Which I did for a couple days and then decided no. In addition to not wanting to have interference with breastfeeding- I'm still a little scarred from the cold turkey weaning with Malachi-I didn't want the other side effects. Insomnia- oh because our sleep routines after two years of crazy have finally become bearable. Irritability, aggression, oh, and the munchies. I don't have time for any of that. So in the end I passed. It's been three weeks and typically a relapse starts calming down after 6 weeks so we'll just figure it out as we go.
I'm curious to talk more to my doctor in May. Last visit I didn't have much to report. When I  brought up some of my latest internet researches, she  suggested I focus my investigations more in the line of the anti-brain-atrophy therapies being worked on, as opposed to the anti-inflammatory drugs.  Which seemed a covert way of saying I've transitioned to the second part of the party. Progressive MS. She explained it as the difference between  a fire that periodically lights up versus a hot bed of coals that just sits and smolders. So in addition to my swagger, I've got smolder. Gary Cooper, you've got competition.
If the transition proves true it would also mean a new field(albeit smaller field) of therapies would be options and other therapies would be ixnayed. I don't mind passing on any more of the needles, for sure.  I am still intrigued by the HSCT I mentioned in a previous post. There are trials going on, even in Seattle, but they want fresh meat. Not aged and smoldering for 24 years. Mostly because they found it most beneficial when done in the still relapsing stage. Which, because of the most recent gimpiness, I might still be in. So there's a silver lining. Or maybe Shane will take me to Germany and get it done there. He totally would if I wanted to. But for now we'll just wait and see how it all goes down. And hope no one gets their leg broke in the process.


Kelly said...

Oy! I'm sorry about the MS progression. You know, I see articles now and again saying they've found this and that to help MS and I always think of you. I never pass them along because I fear it would be annoying - I know you do your research. But I came across some stuff about a lady, Terry Wahl. Have you heard of her? Maybe worth a google if you haven't. I don't want to be one of those pests who is like, "turmeric! You need to eat a crap-load of turmeric!" every time they hear something in the news, you know. I guess the important thing is that you know I'm thinking of you and praying too.

Briana said...

Thanks, Kelly. Yes, some articles do feel like a crap-load of turmeric. Again. I have heard of Terry Wahl and her story is impressive. I was actually planning on bringing her up to my doctor next visit. Her diet wouldn't hurt anyone, for sure. Though my breve lattés might have to go :(
I feel a bit of a doubting Thomas, but I'd like to see her MRI's, talk to her neurologist, was/is it really MS?

But maybe in the meantime someone will figure what is actually going on in the MS brain and why and then it will be like 'Oh, this diet totally makes sense to treat MS'.

Thanks for the thoughts and prayers and research.