Monday, June 15, 2015

My Face Is Up Here

Not that looks are important. We all know it's appearances that count. Unless you home school. Then you wear whatever  you can find and you can show your student ID card if the fashion police catch you.

Fortunately, the only social outing we had this week was to a homeschoolers' event so as long as we could run faster than the other sweatpants-snow boot-sporting kids we were safe.

Unfortunately, its been really warm here so snow boots were out of the question. Which was a bummer because Malachi has snow boots. In fact right at this  moment, snow boots are all that he has. He outgrew his regular shoes and his water sandals got left at the Grandparent's this weekend. Normally that would not be a problem as there is generally someone wanting to or needing to stay home from any errand we need to run. But everyone wanted to go to the much anticipated delayed-yearbooks-and-pizza-party.

So, also due to the warm weather, I decided socks would be just fine for Malachi. It must have been fate, because we actually found matching socks for him. Not so much for Fiona.

             Not that she cared at all. She was just as confident striding around the parking lot, as if she were wearing Jimmy Choo's, instead of her brother's mismatched hand me down socks. Socks rarely get worn out. Or worn period. There are plentiful, at least half of them. The other half have migrated to wherever it is kids' socks go. Thank goodness snow boots are  shoes AND socks in one great package.

 Shorts? Oh, he knows how to make shorts. He also has a t-shirt he made himself when the warm weather caught us by surprise. But he decided to wear his fancier one that day.
We got our books, pizza, and some treats and hid in the shade of a much-appreciated chestnut tree.
Then quickly hopped into the air-conditioned car. Where the kids reenacted  this scene from Eric the Viking. Please tell me this is how your kids get in that car too.

Tuesday, June 9, 2015


First, I need to mention that this post is sponsored. Sponsored by my mother-in-law who took the three middle kids over night. And to the beach. Fed them ice cream and treated them to a breakfast on the patio in the morning. And apparently took them shopping because I do not recognize Malachi's shirt here. Thank you. I'd also like to thank Fiona for taking a timely nap, right now, and my brother-in-law who is taking Cyril to some store to look for parts for the outboard motor he is refurbishing. So quiet time = brain space and maybe a post. It also means I have only myself to blame if this all goes South. Or North, if you live in the southern hemisphere. Do they say that? I don't' know.

But to today's topic. I've always been, or thought of myself, or pretended to be a bit of a hacker. Not computer hacker. Although sometimes I can get mine to turn the screen a real pretty blue for a long time. I don't know how to make it go away so its kind of a one-way trick and not one that impresses anyone that needed to use said computer. Soon. But that is what Shane is for. Among other things.

No, I'm more of a life with kids hacker. And mostly out of necessity. Need to keep the kids in the yard? grab those garbage cans, your neighbors too, and a rope, maybe some plywood for good measure and you won't have to check on the kids for hours. Neighbors and spouse might not be thrilled, but  children make everything worthwhile. If you live in a neighborhood with and HOA, this one will not work. E-mail me for some other options. Or have your husband build a fence. Though using this  hack  has shown to have the added benefit of hastening things to that end. If a real fence is what you're after.

I get my skills from my dad. He can make pretty much anything out of anything else and has always been a bit of a visionary. Water conserving toilets? Saw it coming. He was putting bricks in the tanks of our toilets 30 years ago. Sure we had to flush an extra 5 times but that brick make all the difference on the water bill. Sometimes we would come up with workarounds to his hacks and then,

"Hey, who took the brick out of the toilet?!"

And reminding us with each flush.

"Hey!! Stop that. You know water doesn't grow on trees!!"

Also, if he says 'a real pretty blue' you can hear his light accent from growing up in Hungary. Maybe he was foretelling my future  of blue screens. Visionary, I tell you.

So now you know where I get it from. Though I don't do welding or build log cabins or plumbing or wiring and a host of other things Shane has implored me not to so while he's at work. I'm kind of limited to objects I can move myself and duct tape. Or  taping two objects I can move myself together. With duct tape.

But it has been a quiet time in project land for me lately so I was thrilled when I found a small project the other day which  allowed me  to learn some new skills as well.  Shane? Oh, he'll get over it.

We have been having some unusually nice weather here the past couple weeks. As in, I am wearing shorts. In June. In Seattle. This never happens. I'm thrilled. However, Kateri's window had somehow developed a tear in the screen so I told her to keep it closed to keep the bugs out. Which is impossible at night after and 80 degree day.

I know you can get new screens at the hardware store, but that requires a trip to the store, and  probably with multiple children so why not just fix it yourself?

My first thought was my old go-to, duct tape. But I must have been doing a lot of projects lately because we were out. Even the kids' fancy Christmas rolls of it were empty.

So I thought of other patching material we might have around the house. Or yard. I remembered the $.99 strainer I picked up at the thrift store for the kids outside play. It would be perfect!

 Now I just needed a way to attach it, without the help of my favorite tape. Then I remembered the dark grey speck of something someone had accidentally gotten on an often used light switch. Three months ago. That was some pretty strong stuff. And I knew where to go to get some. I called my supplier.
                                       "Cyril, will you go in the garage and get me some J.B.Weld?"

Cyril mixed it up for me and we played with some different patching layouts for a bit. Then smothered the weld on and put the hand-cut custom made patches on top. But first we put down a layer of aluminum foil (have you ever heard a British person say aluminum? Is sounds like it comes from  something magical. Like a unicorn or something. FYI IMHO). The foil kept the screen from fusing to the table and interfering with  future card games, drawing, or sewing projects which Kateri currently uses her workspace for. We are responsible workers.

Then, since the screen and the patch were bent in different directions, we decided to use some books we found on Kateri's shelf to weight them down while the patch dried. Which takes a few hours. But will last a lifetime. Just ask to see the light switch sometime. Also, make sure to put more foil on top of the patch or you will have a book blocking your view. For a lifetime.

The next day, we  trimmed the patch a little and replaced the screen and, Ta-Dahhhh!

No more bugs.

I called Shane in to witness our work. He outwardly pretended to be nonplussed. But really he was SO plussed he was speechless.

Its nice to be able to show him all the clever things he never dreamed about me doing when we got married. But now I can show him and he is so thankful and realizes what a true gem of a wife he has.

I told him I would do it differently if I had to do it again. Learn as you go and all that. Shane complained of a mosquito bite the other day and I found another rip in a screen in the kitchen.
But we'll just keep that one closed for now. For some reason I can't find the JB Weld.

Thursday, June 4, 2015

Nani's MSBS

I never intended to take a long foray into medical blogging. Sorry if you are here looking for cute baby pictures. I hope this makes up for it. 

                                          She still really likes the fan. If she got her shoulder a little more exposed this could be a true 80s photo.

I promise to wrap it up soon, but fist a correction. The other day was INTERNATIONAL MS Awareness day. Not National. No idea how I got such an auspicious occasion pegged wrongly. Actually I have lots of ideas. They mostly start with "Mom!......" and end with "So what?"

Flippancy aside, I had considered this post's title as  a separate site to catalog some interesting things I've come across along the way to nowhere and which I might want to keep an eye on in the 'what is happening to my brain?' department. Along with some personal  updates for my records which are to date loosely kept in my head.  Which is not a super secure or reliably easy accessible location these days.

The latter reason I feel a bit funny about ( no one wants to hear about your hurty knee). But I've found over the years I appreciate learning  from other's experiences, research, experiments,  or mistakes. Why not add my own? And I'll promise to keep it clean, Though if you've read some of my kids' antics and you've come back, I think there is not much of a problem with what you can handle.

So first in the fascinating field of research, is this new discovery. Which could lead to new mechanisms for delivery and therapies for a host of diseases. Which is great news considering this study. Though technically previous studies would have put me firmly in the progressive and wheelchair bound camp  several years ago. So I take them all with a grain of  salt.

And when studies are given grants to study the prevalence of falls in the MS community, I kind of wonder about the seriousness of the researchers. Let's  take a group of people prone to balance issues, sensory issues, and feelings of not knowing where their limbs are in relation to anything else in the world and see if they fall down. A lot. Sounds like a prank more than a study. Wish I could get my hands on some grant money for a study or two. I'd find a way to work kiwi mojitos and white sand beaches into it for sure. And I would sacrifice myself for science and offer to be a guinea pig. (As the parameters of this study have not been set,  please do not send applications at this time. Donations? Why not?)

Its a fun game of extremes I often play. Something new will pop its head up and present  limitless rabbit holes of research and articles to follow. And for a second I feel a glimmer of, wait , what's that? Could it be, hope? And after weeks of excavating and spelunking I come up for air and realize, no. It was just the triple cream brie smooth talking, and now its gone. And all that's really left is a host of poisons that may or may not help me before they kill me. And the cheese rind.

But since we've come back to reality, we need groceries, and obviously more cheese. So then it's head down and back to the daily grind until the next shiny object  appears. Tune in next week for More of What Is Not Here That You Hoped Was and Most Likely Never Will Be. Amen.

Generally when I start these meandering journeys I  often get inspiration from Wheel Chair Kamikaze
Also when I come across something I don't quite understand, like most of it, I think 'I'll just wait until Mark explains it.' Sometimes it helps. Or I think it does and that's enough for me to go running to my neurologist asking for her thoughts secretly hoping it will earn me points in the 'sure her brain is atrophying, but she's still really sharp' department.  I don't know if it works or she silently adds points to my EDSS rating with each new discovery. Ignorance is bliss. I'm happy.

I am actually planning on picking her brain, ha ha, seems only fair, on the discovery of a  lymphatic network in the brain. Maybe she'll write back its old news, or junk news, or only pertains to mice and we're back to square one and mai tais.  Or maybe the discovery could shed light on how rogue immune cells get to the brain to attack the myelin. Not a porous blood brain barrier but a secret backdoor through the lymphatic system. But I still have my skepticism (I have  a lifetime supply) Are  the cells there to destroy the myelin, which has been the current thinking ,or to clean up what is already falling apart? Which has been bandied around for a little bit. But  since there is an Internet and no answer that has produced a cure, anything is  fair game in my book. Or blog.