Wednesday, May 27, 2015

Did you know today is National MS Awareness Day?

Yeah. Me neither. No flowers or big delivery of any kind. We still get mail and Shane goes to work. Seems kind of pointless to me. Oh, and just for the record, last month was national MS awareness month. A whole month of  nothing special. While I'm on the topic, apparently the color code for MS is  ORANGE. Why not black? I look good in black. No one looks good in orange. I guess all the other colors got taken first. Its funny, to me, to color code maladies. I'm sure no one else wanted orange. Get a group of MS supporters wearing their snazzy shirts together for a barbeque and guess what it looks like?

Oh, Look! The convicts are here to clean the park! Come on kids, time to go home.

Fortunately, the news feed Shane set up for me to monitor mouse deaths (aka drug trials) alerted me to this important fact. So now I can.... do what I normally do every day.

Since we are on the topic, I had my meeting with Dr.S yesterday. I remembered most of the things I wanted to ask her about so that was a good start. I do have her email, in case I forget something, but have not gotten into habit of sending her links with a 'did you see this article?' attached. That might create a difficult line to walk between Dr/patient and victim/stalker. I would have so many questions.

First off, she has heard of Terry Wahl's and her diet. Like me, she is skeptical of one person's diet change becoming a cure. Going from wheel-chair bound to ambulatory would require  major nerve repair. As you age and/or disease progresses your body is less able to repair the damage and recoveries from relapses are less dramatic and just less in general. At least that is how the pathogenesis of MS has been observed so far. But since they do not know exactly why the damage happens in the first place, or the mechanisms by which they happen, I think there is room for lots of research and discoveries.

Just because something is not the result of a big expensive drug does not mean it didn't happen. So there is skepticism to be had all around. Most of the drugs out there are only about X% effective anyway for X% of patients (my statistic, so quote it loosely). Nothing has been found to reliably  make a huge impact on a huge number of people yet. So they just keep coming up with new expensive drugs to treat, or kill a few, patients.

We discussed my particular state and what might be helpful. She did not give me a 'free massages for life' gift card, but she did recommend seeing one of the therapists there to  help think through what lifestyle changes might be beneficial. So I might have another chance of winning a gift card.

I asked again about the exercise/gimpy legs correlation vs causation vs  whatever. She said it was just time. I was due for it.  Which would be great if I had a calendar and could plan. Wine tasting? Oh wait, my tongue is due to be numb that week. (That did happen and was one of the funkier episodes I've experienced) She said if there is a worsening that can be recovered from in an hour of quiet time, the activity is fine to do. If it takes a day or more, I might want to rethink what/how I'm doing things.

An hour of quiet time? I told her that sounded heavenly. Along with impossible.

Make breakfast: rest an hour
Garden: rest an hour.
Make lunch: rest an hour
Costco shopping: rest an hour.
Make dinner: rest an hour.

It probably didn't help that the night before my appointment Malachi was up and restless from 2am-7:30am and the whole house was woken up to smoke alarms going off when Kateri made hashbrowns for him at 5:40. Including Fiona, who then refused to nap until I got home from my appointment at 12:00. So lots of opportunities for quiet restful time in a day. Obviously.

I brought up all the new 'breakthrough research' reported in the headlines in the past couple months. Again, it was, 'Its all very interesting. We'll see how things go from here. It really comes down to trials and results. With humans. And years, and more years of trials.'

I brought up the micro biome, or whatever its called, research being done and it is still 'we're not really sure, but we're looking into it.' There is one trial specifically focusing on it, but it requires being on a particular drug, Tecfidera, which in addition to helping drugs get across the blood brain barrier, also allows non-drugs and potentially fatal particles to get to the brain. So not super exciting. Given that Fiona is still nursing Dr. S would not, nor would I ,be comfortable with any of the 2nd line drugs, which mess with the blood brain barrier and cross into breast milk. So it would be back to the older 1st line drugs. Meaning needles. Lots of needles. And scar tissue. And I'm not sure I could even get a needle in anywhere anymore due to said scar tissue. If I knew it might help, I might try and work them in, but after flunking the last two I'm not so certain they are worth it.

For now we decided to wait another 6 months, then regroup and see where Fiona is on the nursing timeline and I'll keep studying up on the  therapies she would recommend Tysabri, Gilenya, or Tecfidera. I don't know why she kept leaving out massages, like it wasn't even an option. I think I might just go to Canada and get one. I hear you don't even need a prescription up there.

So there it is. Just in time for National MS Awareness Day. Now you are painfully aware how difficult getting  a massage out of your neurologist really is. Thankfully, Shane is not a neurologist.

Monday, May 25, 2015

Down The Rabbit Holes

Warning: If you do not or have not dealt extensively with small children or are currently soon to be  embarking on said dealings,  move on. This post is probably not for you. If you have a sensitive stomach this post is not for you. If you have no interest in reading somewhat useless ramblings about trials, sciency things, and other peoples' (ok, my) current obsessions, you know what to do. Anyone? Bueller? Now that we've whittled down to a brave few, or none, here we go.

The first rabbit hole is actually a heating vent.

Malachi is still toilet "training". By training I mean he does what and where he wants and everyone else dons hazmat gear and tries to keep it together while cleaning up. So far everyone is responding well to the training.  If by cleaning up I meant grabbing some paper towels and lysol spray it would not be so unusual and certainly not worthy of a blog mention. Sadly, that is not the case.

He pretty much gets the brain-body-'ta-da' connection of things. So he's not clueless. Just gross. He mostly does not use the toilet for any other purpose than making fascinating toilet paper swirlys.  He is content with a diaper, which is fine with me. Except when he decides to empty the contents of the diaper himself. Which to him means removing the diaper and shaking its contents down an open heat register.  Why a heat register? I have no freaking idea. Kids are just gross and grosser still, and I probably looked bored so he prepped a little activity for me while I got Fiona to sleep or was contemplating a coffee or a shower or anything else that I would rather be doing. Instead of playing  'let's go fish for feces'.  I am so tired of that game. Just to set the record straight, he does not get rewarded for his antics. I don't know what he does get out of it unless there is some sense of self mastery in it. Why can't self mastery manifest in ways that result in oh, you know, USING A TOILET! Or tying a shoe. Even writing ABC on a piece of furniture. Why this?

 His favorite vent has a steep slope and a sharp turn, making retrieval of stuff, difficult and painful. And there  is this  natural instinct that won't let you just go whole hog in grabbing a rolling poo ball. But gentle feeling around can often result in pushing things farther. And that is one phone call I do not want to make to the heating company. I don't know why this is still a problem after six kids. It never gets easier. Routine, yes. Easier, no.

    Once we discover and 'event' I assign someone to dispose of the diaper and someone to keep the babies from the site while I suit up. Usually the kids will offer moral support and help in the form of huddling around saying 'ooh gross!' as I put my arm up to my armpit into the hole. And then if Shane is having a hard day I'll text him and say at least he was not getting this out of a vent. (Anything to elicit a sympathy foot rub) Don't worry, I won't show you. That's disgusting and would get me kicked off the internet. The Elders have their standards. Hopefully the NSA likes the texts. Or not. Serves them right.

But there is an end in sight. Summer is coming and he can run Lord of the Flies in the back yard. And on the off chance he might need just a little extra encouraging on chillier days, we ordered him this. As of yet it has not encouraged him to make dramatic changes to his toileting routines. I'm considering maybe adding some cute big boy undies but I'm not sure I want the extra laundry just yet.

On to a different dig site.

I have a neurologist appointment this week and have been gearing up by compiling a list of 20,000 questions. For an update- a little more feeling has returned to my feet.  So that is cool. The stiffness comes and goes and my legs get heavier with every stair until I've got 25lb weights on my ankles at the end of the flight. I have not ventured back to the elliptical but exercise is definitely one topic I'll bring up.

In my in depth research I did come across this gem. I can't wait until they offer weekly massages for everyone. That would certainly improve anyone's quality of life, or just general mood. A couple years back massage therapy was highlighted at an MS talk I went to, as the most beneficial alternative therapy out there. But that was all I ever heard. Nothing about replacing your $50,000 a year injectable medication with weekly massages.

When you start looking into new research, I think in any medical disease,  it appears they are always on the cusp of discovering a cure for XYand Z. Or getting closer to discovering the cause of AB and C. Seriously. Try it.

'Zebra fish help shed light on  mechanism of re-mylenation. May open door to new therapeutics.'

2 years later.

'7the grader with a microscope in her garage discovers cure!'

3 years later.

'Researchers  reverse paralysis in  mice with secret compound.'

As one neurologist said, "Its a great time to have MS."  If you're a mouse. Person, not so much.

Another interesting study was done  on Biotin, or B7, or vitamin H, and a few other names. Just to make looking things up more fun.

My favorite one of late is this one. Can't  wait to order my own cocktail some day.

"I'll have an antifungal, with a steroid. Neat."

At least the drugs in the last study are already existing compounds. So that should help speed things up. By about 20 years or so.

Ok. So I'm a little jaded when it comes to medical research actually coming up with new and helpful innovations. In a timely fashion. But when time=progression=sucky, time is of the essence. And time marches, or limps, on.

 I will bring up all these studies, and more, to my neurologist. And then I'll schedule a massage.

Friday, May 1, 2015

Hooray! Age of Ultron is out! I'm so excited!

I will eventually see the movie too. Right now I'm excited because Shane called and said he'd like to take the big kids tonight. I said cool. How about a showing after the babies go to bed?

So they hung around until Malachi was in bed. I got Fi down. And now the house is eerily quiet. With the exception of the baby monitor and the new fan I bought. If it's too quiet I can't sleep so now all my kids are white-noise-addicts. Which works really well for babies with siblings who need to nap.

                                                  Fiona especially likes that she can push the power button herself.

At first I didn't know what to do. I originally planned on folding the mound of clean laundry trying to overtake our bedroom. And the kitchen floor could use a good mopping sans baby feet running through leaving prints.

Then I remembered a piece of ancient advice I heard as a new mother.

Remember to make some time for yourself.

Which is really the most ridiculous thing and really just means 'think of all things you won't be able to do for the next 18 years, or maybe ever.' Hello postpartum depression.

Thankfully I am not a new mother any more. In so may ways. So I could actually take the advice. I turned on the hot water, laid out my jammies, and took a hot shower. And then all I could think about was the scene in Psycho.  One down side to the sound muffling fan is that is also warps sounds.

Is that the baby? Did someone just knock? Who would call this late at night?

But before the hot water even thought about running out I was able to talk myself out of it and actually enjoy the foamy solitude. With my pink scrubby sponge. Not the same one I bought when I first tried to follow the same advice before Fiona was born. I knew what the new baby stage entailed so to psych myself up I went out and splurged on a $.99 body scrubby thing. I figured if I could make my shower a little more luxurious maybe I wouldn't mind so much the 50,000 other things I couldn't enjoy. I even got some relaxing shower gel. So for  $8 I could get a tiny spa experience every morning. Or once a week in the really early baby phase.

Then one morning it came to an end. I saw Shane in the shower and he picked up the scrubby off the shelf and rubbed a spot on the floor.

Horrified, I asked what he was doing.

"Oh, there was just something funky  so I thought I clean it."

"Umm. That's not a cleaning scrubby. It's a body scrubby.  You just cleaned something funky with the sponge I use to clean me ."

"Oh,  I thought it was for cleaning the shower. That's what I use for all the time."

"Well that is what it is for now!" and now the scrubby resides on the shower floor.

I went out and bought a new one. This one was more expensive ( $1.50) and had a little rubber suction cup on it. I showed it to Shane and told him this one is for me, not the floor. It was a preacher shade of pink, not sure how much that matters as he is a little color blind, but I thought color-coding might have positive outcome. He said fine but to keep it off the glass door where it would be too prominent and he might forget what it was supposed to be used for. Well the rubber suctiony thing does not like the tile walls and will only adhere to the glass door.
Which I explained to Shane and so far he's been able to resist the temptation to scrub the shower in the mornings. I did put an actual cleaning sponge on the shelf for him,  just in case. So far its working.

Speaking of "Me time", I  did schedule an outing for myself. To the dentist. I did try the hair salon first, but they were booked both attempts I made. So I was left with the dentist if I wanted some quiet time. I felt so stoked about it and actually wore jeans for the first time in I don't even know. I thought of wearing earrings but felt the pants were fancy enough and I didn't want the new dentist to think I got dressed up. Just to get my teeth cleaned. Which I did. She didn't seem to notice. Shane did, and told me I looked cute. Twice, before he left to work.

It  might finally be the time to get my old wardrobe out, if its not too outdated, and join the rest of the world in doing all the things I haven't' for the past three years. Maybe I can get a new outfit and Shane can take me to the movie. And buy me a new body sponge.