Thursday, May 24, 2012

MS on the Brain

Which is better than on the spine, so said my old neurologist. And so far the brain has been where it seems to be the most comfortable, for now. Which generally indicates more cognitive issues and less serious mobility issues. And that means, the best way to  stump me is to ask for my phone number. A guy totally threw me for a loop and asked me the other day. First I started off with my old number, then I got confused so I lied and said that was my cell#. Then finally, after giving it some thought, I spit out the correct digits. Thankfully every time stores ask for my number, does anyone just give them out like that?, I just say 'no thank you' and avoid the whole issue. Not that I would give it out anyway.

Ok. I found these articles to be rather 'germane'. The use of that word is a little tribute to my brother-in-law, Sean, whom I thank for introducing it. When I was 15 or so. I was contemplating starting another blog so I could keep things of note, like these articles, organized and accessible, but not so much to anyone is not interested. But I haven't. So if you are not interested you can 'skip to the end'* and find something else.

Every once in awhile I get newsletters with links to articles like these. Sometimes they are about the latest death or side effect due to the latest drug. Can death be considered a side effect? It effectively halts all progression of a disease, so I'm not sure. But sometimes there are more interesting things like the following.

This one is about the Myelin Repair Foundation's work. I read about them when they just started and their singular approach to discovering how to promote remylenation, something none of the other drug companies were focusing on. The man who started it, Scott Johnson, has a personal story as he was diagnosed with MS about 20 years ago, I think. Though it has felt like an eternity watching their progress, I know it is a million times faster than other groups and Scott understands that time is of the essence. Some people don't have 10 yrs to wait for the trials to start and then another 10 to get it the results  and  FDA approval.

This one was particularly germane, as it mentions particularly  women diagnosed at a young age. Both of which apply to me. I think I read the article elsewhere with a title that focused on the cost (up to $40k a year) and side effects (permanent scar tissue build up, having to stick yourself multiple times a week, feeling like you have the flu, liver problems etc) and went on to question whether or not is was of any benefit to patients who's MS appears "benign". I don't know how many neurologists would concur there is a category of "benign" MS. My old one said it is a matter of time before it is not so benign, therefore drugs were the best bet. In my experience, I have not found much benefit, and when I found none, happily dispensed with them. I actually just recently cleaned out my cupboards where I had multiple containers of used needles. You have to dispose of them at specific sites and making an effort to get rid of them was not on my radar screen so they piled up for years. I had to make two trips to Bartel's to get rid of them all as they can only hold so many in their once-a-week-picked-up receptacle. Oh, and the fact that I had to pay a disposal fee for each container was also a deterrent. Once a day for 7 years adds up.  It didn't cost me anything to keep them on the garage shelf and I rarely saw them. Until Shane decided we should clean the garage last week. I thought they were all gone, but I found one more box in the kitchen cupboard yesterday. I don't know how long it will remain there. Its not really in any one's way.

Warning- this article contains numbers. Fortunately I was able to extract the information I wanted from it anyway.

                                                            *The End

Shane and I were just discussing cultural literacy the other day and how many references, quotes, etc. exist for just a generation. The above 'skip to the end' is of course from The Princess Bride which I remember watching over and over with my cousins, friends, siblings. We could quote pretty much the whole movie and used the lines in daily conversation wherever they fit. Although one time, I inadvertently used the 'its possible, pig' and the recipient was not amused. It is good to check your audience first. I just assumed everyone had seen it. I feel sad for the kids who haven't seen it. Somehow my kids' education wouldn't have felt  complete without it and I felt it was my parental duty to make sure they did. Shane decided they also needed to see some Monty Python so we've shown them some select scenes from The Holy Grail. Having seen it before myself, only select scenes. Fortunately it is easy to find 'The holy hand grenade', 'the black knight', 'the bridge' and of course the 'killer rabbit'. Audrey was not as amused by the bunny one as she is convinced all rabbits are docile and deserving of the utmost care and reverence. Despite the scars we all have when one of ours

We are finishing up our school work in the next couple weeks. Audrey finished her end of the year testing and feels she did well. She will be doing algebra next year! how the time flies. The other kids will theirs soon. Shane starts vacation tomorrow! A much needed one. Last night he got home at 6:30, which is not unusual, then got a call two minutes after he said 'hi' and was on the phone for another half hour. I am hoping to get some house/yard work accomplished and lots of relaxing and some time for us to get away for a bit.

I might try my hand at maternity clothes shopping again. My sister remarked the last 5 times she has seen me I was wearing the same outfit. Its because I have 5 of them and it's comfortable. But it may be time to add some new things. And then I have my ultrasound coming up, where we may/may not be able to ascertain the gender of our newest arrival. Kateri is hot ot trot on getting anything we may want/need right now. I told her we'll hold off at least until we know to prepare for a boy or girl. I am afraid there will be no holding her back once we do know. Audrey didn't cooperate at her ultrasound and then I skipped the ultrasounds for the next two. So Cyprian was the only one we knew about. It did help with name decisions. We are pretty set on a family name for a girl, but not so much for a boy.

While I've been clicking the keyboard, the big kids have been shooting footage for a movie they are making. Cyril just came to show me some clips and so far it is looking good. Pippin makes a very cute King Arthur, just to give you a hint. I will definitely link to the finished product and a collection of bloopers, which with kids acting, directing, scripting, and filming there will be some good ones. And just now Kateri came in to tell me she got rid of her toy kitchen and fridge and I didn't need to worry about them. She decided she needed more room in her room and that she didn't use them enough to warrant all the space they took up. So I lugged them down to the end of garage, with Cyril's help, and suggested we ask the neighbor girl if she would like them. Apparently she, and her mom, said yes. So Kateri got Shane's dolly out and wheeled the stove over while the mom carried the fridge. We have great neighbors.

Cyril decided he is done with lizards and we hauled the big tanks out of his room to the end of the garage. One got picked up the other day by a fellow home-schooler, and the other is spoken for as well. I feel like hauling lots of things down to the end of the garage and watching them disappear with not much effort on my part. It is a good way to start spring cleaning.

Thursday, May 10, 2012

For what do we live, but to make sport for our neighbors and laugh at them in our turn?

(I was going through some posts and found several old, unpublished posts. Not like a lost and valuable manuscript, but they were fun to re-read and wonder what/how I was intending to finish them. I'm not entirely sure where I was going with them. This was meant to be a follow up to the Gimp Parade post, which I am not able to locate at this time. But here it is anyway.)

This is one of my favorite lines by Mr. Bennet. Actually, I think most of my favorite lines in Pride and Prejudice came from him. I highly recommend the BBC version of Jane Austen's book. I don't really have anything good to say about the others.

I thought this quote really summed up how I feel about dealing with our fellow parade participants. Because if you can't laugh or be laughed at, well that's too bad. You're missing a lot of fun. And looking at things from a comedic perspective can help you get through a lot.

I know, for me, when I am having a hard time or 50 thousand things have gone wrong in the last 30 sec, I pause and think "This will be so funny when I tell Shane or  Tirzah" and then I almost look forward to the next harrowing event. It's like the cherry on top. And just in that brief moment, it doesn't seem so hard. Sometimes. Sometimes it may take weeks to be able to fully appreciate the hilarity of a situation, but it will come.

Laughter is the best medicine. It lightens the mood when things are too serious. It pulls us back and gives us an entirely different perspective. And keeps us from taking ourselves to seriously and going over the edge.

And what is funnier than our, or our neighbor's, mishaps? Not much.

So many times, like the one where the kids cut up and spread apple all over the kitchen, I'd  think "Quick , where's the camera. This will be great on my blog." And sometimes I start laughing as I compose the funny story in my head. Which is kind of awkward if I'm out in  public. Like the time I "ran" in to the grocery 9 mos pregnant, tripped on the little rug and landed on all fours right in the door way. I laughed all the way to the diaper aisle and back out. I wished someone had been there to enjoy it. Shane had already pulled the car away so I just had to tell him about it when I got back and show him my skinned knee.

Even more serious events were opportunities. I guess it was so ingrained  in us siblings, it was hard not to enjoy a joke. Even at my brother's funeral. Of course there were lots of tears, but somehow slightly "inappropriate" for a funeral, phrases appeared everywhere. And so we enjoyed  respite from mourning and laughed.

When I was first diagnosed there were lots of opportunities as well. I mean come on, a stiff-legged, visually impaired teen-ager, with no sense of balance? ( I know you are laughing already, or at least I hope you are). I remember once, racing my younger sister to the piano. Somehow we both got the idea to practice and started heading for the bench at the same time.With both legs numb, it was not a graceful race- much like Frankenstein tying to sprint. Only slower. I can only imagine my  upper body moving much faster and fluidly than my concrete legs. And as she was behind me she got the full show. She collapsed in  a heap of laughter on the floor.  I kept moving, not sure what you would actually call my particular method of locomotion, and got the piano.

Then there was the time I showed up for a therapy appointment to find the door locked. And I really regretted the cup of tea I had had before leaving. A community college across the street and a police station kitty corner to my location, I felt I had not many options for relieving myself. Missing the appointment was not desirable and neither was trying to get through an hour of therapy with wet pants. It seemed there were no good options. Until I spotted the large flower pots on the front step. And not being pregnant and still being somewhat small, they seemed  the perfect screen for me. I tried not to look at any passing cars, much like a child hiding by covering his face, and started giggling at myself for being in such a situation, but also feeling resourceful for solving my predicament. It was raining and I knew the step would be washed, so I did not mention it in my session. I did mention it to my other therapist-not the one with the flower pots. She  laughed and congratulated me for getting out of a tight spot successfully and said it was a great story.

Or my second date with Shane. He took me to the symphony and I wore a cute little black dress I had bought for the occassion. I was feeling cute, the music was great and we were getting through the evening very well. At the intermission I went to the restroom, which  magically had no line and was pretty much deserted. As I was walking back into the lobby a lone lady on the pay phone( yes, it was that long ago) paused her converasation waved and called me back in saying "Excuse me miss? Your skirt is caught in your waist band!" I reached back to find that the hem had caught in my nylons, my entire backside was exposed, and I had just stepped into the crowded lobby. I immediately felt less svelte and very thankful to the woman who kept me from an extremely embarrassing event.  I didn't tell that one to Shane until much later, but you can appreciate its potential. Of course I told my sisters when I got home, who in turn recounted other date mishaps and we all laughed.

I think Shane is fine with me sharing a moment he had. He had recently interviewed for a job he wanted(which he did get) and was waiting for call back on his cell phone. Back when cell phones were still novel and  the size of small bricks.  He had one in his pocket and was walking across the Quad at the university enjoying the warm spring weather and flowering cherry trees after class feeling that all was right with the world. And probably thinking about me.  He reached his hand back to his waist and found, to his dismay, a toothbrush, sticking up like an antenna as it was trying to make a daring escape up and out his back pocket. He told me that one the same day, which was sweet. Of course I laughed.

The moral of this post is 'learn to laugh at yourself, because everyone else is so you might as well enjoy the joke too". And also, watch your back. Things might be looking pretty rosy from the front, but there is always another side.  Which fortunately works both ways for those not seemingly not so pleasant situations.      I"m pretty sure that is what my intentions were when I started it years ago.

Monday, May 7, 2012


We had a very busy weekend and I am ever more looking forward to finishing up schooling for the year and maybe getting to some yard work. I am so excited yard work sounds appealing because a month ago it sounded impossible and I didn't even care. But with the morning sickness completely gone I find new interests and projects coming into my head and I feel I am getting the energy to actually follow through with them. Which is very good timing because this weekend would have been very different a few weeks ago.

Friday afternoon Shane texted me and asked if I wanted to take the kids to see The Avengers that night. Knowing it was opening weekend and would be really crowded, it was a 2 1/2 hr movie, I had to be at the church at 9:30 for Kateri's First Confession the next morning and that we'd have to scramble to meet him at the 4:20 showtime I still said yes. Three weeks ago I would have just texted him back what I wanted him to bring home for dinner and left it at that.

But he got the tickets, we met him, I stayed awake  the entire movie and we all had a great time. It was very good. It was totally clean, maybe a couple swear words and a tiny bit of blood. And lots of great lines delivered by Robert Downey Jr, who I really like. But I really like funny sarcasm and he is great at that. So we had fun even if we did have to sit in the second row. Then we had to go out to eat because it was after dinner time and we were all starving.

The next morning I took Kateri to her first confession class and confession. I told her she'd have an hour to work with the teachers and then they would get a snack before going into the church. She liked the idea of having snacks with the kids and was happily practicing her prayers the entire drive.It went very well and though she was nervous she took her turn without any fuss. Then she asked when she could go again. I am so proud of her.

Then we raced home to get ready for Cyril's drama class' production of  'A Midsummer Night's Dream'.
I grabbed sandwiches and doughnuts on the way home knowing everyone would need to eat and we had to hurry. It helped mostly. Cyprian was thirsty all through the play but he survived until dinner afterwards. Grandma and Grandpa had taken Cyril to the theater already, which meant Shane and I could drive together. Which is always nice.

Cyril did very well, and even when he forgot some lines he recovered and most people probably didn't even notice. He played Snug, who plays the lion, and he did both roles well. I think comedy is his thing. But he decided not to do drama again this year so maybe we'll just be seeing home productions for awhile.

After the play, we had to celebrate both Cyril and Kateri's accomplishments, so we took Grandma and Grandpa out to dinner. We had to get to bed at a decent time, as early mornings are no small feat for these kids, and Kateri was making her Solemn Holy Communion the next day. It was fun getting her up and dressed and doing her hair, then carefully getting her into the car. Fortunately she likes that kind of thing and never complained once.

We had to skip the group  lunch after confessions on Saturday to get to the play, but I think brunch the next day with Father Josef more than made up for it. She kept talking about how nice Father is and how nice his house is and how they got to have sparkling cider in glass goblets. She loved all the fanfare and processing. And picture taking. We kept having to remind her to pay attention all through Liturgy because when she caught my or grandma's eye she would sit and grin and basically act like a model until we motioned to her to turn around. She likes cameras too.

Grandma and Grandpa had things to do, but even after brunch Kateri was not done celebrating. And the rest of us had only snacked, so we stopped at a cafe for more brunch. Finally, I made dinner that evening and realized I had not cooked the entire week-end, until then. But everything felt very festive and special to the kids, which it should. We will have to have another party for Mother's Day, and Grandma's birthday, and the end of classes. But eventually things will calm down. And then Shane and I are going away for a couple nights, for a belated Christmas and 14th Anniversary celebration, which until now I was not feeling well enough to enjoy. But this timing works out perfectly.