Saturday, January 25, 2014

A shift

As an aside to this post, someone (one of those people who thinks they know everything) told me how they would never put anything personal about their life on the Internet, and thought no one else should either.  They don't know about my blog.  I suppose I put my life out here because I made the conscious decision to do so.  Many people wouldn't do this, but  I think you never know who might find something about my life useful in some way to them, or somehow interesting, or something else.  And so I write about my life, in the open.  Not everything is here, and people have told me they follow me through my blog.  People should know that this is actually a small part of my life, the parts I want to share.  Many of the hardest parts of my life, and some of the best parts, are not here, and it's not a political blog either.  Enough said.  Onward with the blog!

Go back a few months ago.  I went to see my neurologist specifically because of migraines.  I always felt that MS took front and center at my appointments and that migraines were an afterthought, whereas they needed to be better addressed.  I get migraines in waves.  If you've had a migraine you know they are horrible and incapacitating; if you haven't had one, just hope it stays that way.  When I get a migraine, I try to plow through it until my body tells me it's time to sleep.  I don't usually just get one migraine.  I get a whole series of them over about 5 days. When I went to see him, I kept having repeated series of migraines.  So I got a new medicine to add to the old one with the thought that one is longer lasting, so take the shorter-acting one with the long-acting one and eliminate the 5 day recurring migraine.  Excellent!

I picked up the medication and read the warnings.   That might not have been the best plan.  Then I decided this new medicine might cause me to have a heart attack or something worse so I didn't take it.  Really I should have called the doctor to ask.  Warning labels always say stuff like that.

Over the last few months I've been relatively migraine-free and didn't need the new medicine. Excellent!

This past week I went for a follow-up with my neurologist, ready to talk all about MS, how I was improving, ..., focusing on MS.

Instead, the appointment began with a big migraine discussion!  He convinced me that the new medicine was safe and said I could call should I have questions (ie if I think something is going to kill me, it's pretty easy to pick up the phone and he doesn't mind).  Then he likes to check out the ulnar neuropathy I have which is caused by pushing on the handles of my walker.  He thinks surgery would be fantastic; I don't; life goes on.  At the end, we talked about MS, but not much.  I told him about making it around the track on Christmas in under 15 minutes, something that took me over an hour a couple years ago...  thank you, Ampyra.  And he said yes, I am getting stronger.  He thinks I look so much better than when I first saw him in June.  I'll take his word for it.  He must be mystified that Ampyra has done all of this, and perhaps mystified that I'm not interested in some other medicines.

So to wrap up this rambling blog, I think it's unique, and really neat, that someone realized that medical priorities may shift.  I'm getting stronger physically, so I am stable.  What wasn't stable was my migraines.  So those moved to the front of the priority list.  No other doctor has ever shifted priorities like this, so I am thankful someone finally did, because in reality, migraines can be a whole lot worse than MS.


Saturday, January 18, 2014


"None of us want to be here." 

Those words were said 2 days prior to the situation in which I found myself, and though totally unrelated, the statement held true.

It was our first skiing trip of the season.  These days, we can't drive to the mountains, ski, and then drive home all in one day.  Since I sit-ski, it's too much sitting - all day - and my legs don't like it.  So this time we left early Sat, skied on Sat, stayed overnight, and then came home on Sunday.

I used to have a 4 wheel drive vehicle, but for reasons of lifting things into the car, I had to get a mini-van.  Mini-vans are very exciting to some people.  I like my mini-van, but they are just not for me - big, and most importantly for commuting to ski, they are 2 wheel drive.

Driving up to the mountains that Sat , we encountered a lot of traffic, but it's either choose traffic Sat morning or traffic Sun afternoon and Sun afternoon seems worse.  Unfortunately, there was snow and ice on the road, as well as traffic, on Sat, so it took us over 3 hours to get to skiing.  I told my daughter, "Well, at least the way home can't be as long as that!"  I jinxed myself.

After skiing, we spent the night where we always do - nothing is cheap, but where we stay is on the cheaper side of things.  More importantly, the people who work there are always helpful, not because they have to, but because they want to help.  And I like that.  They also remember me every time, because somehow 2 years ago, when using the bathroom sink, it became dislodged from the wall and ended up on the floor.  People ask how I didn't get hurt and I don't know.  I suppose I was somewhat lucky.

A snowstorm was predicted to go through that night and I thought perfect - then we should be fine to drive home.  So we ordered pizza and watched the Olympic ice-skating championships, while my daughter tried to get me engaged in playing Minecraft with her, while I tried to stay awake.

The next morning, I thought the cat was poking me until I realized it was my daughter, informing me that I had slept in!  It was 7:20.  That is actually sleeping in for me.  Usually my leg spasms have me up by 5:30 or 6.

"Is it snowing?" I asked.  "No," she replied.  Hmmm... 10 minutes later, she informed me that it was snowing.  10 minutes after that I realized the storm had come late.  It was just starting to snow and the wind was blowing so it was hard to see anything outside.  This was not good news.

Maybe the storm would blow through quickly, by 11, when we planned to leave.  Then the roads would be ok and we would miss the Sunday afternoon traffic. In reality, we should have left then. By 11 there were no good options.  The storm was still there and visibility was bad.  If we waited we would be with the traffic and in the middle of the storm.  So we left.

Looking back, perhaps staying an extra night would have been a better plan!  Looking back, there were no trucks on the road which indicates bad weather.  And as I looked around me I was surrounded my 4-wheel drive vehicles.

Without weather, it's not a long journey from where we were up to the main tunnel that is the top point at which cars then head down to Denver.  We drove slowly.  I showed Lori how going slowly was working, how the other car next to us kept getting stuck because they were pushing hard on the accelerator pedal and tires were just spinning.  2.5 hours later, going at most 5 miles per hour, we were 2.5 miles from the tunnel, although we didn't know this because we couldn't see much.

All of a sudden, the 3-lane road became 1 lane and a slip and slide, make your own way, combo of 2 lanes.  We were in the slip and slide area.  After 2.5 successful slow-moving hours, we were stuck.  Nothing worked; the only people getting through appeared to be the 4-wheel drive vehicles; there were lights on the left side of the road and lights and state patrol vehicles on the right side (where we were).  And we were stopped.  "None of us want to be here."  That's what I thought right then.

A patrol car pulled next to us and informed me that there were 2.5 more miles to go and things would only get steeper. "If I were you," he said, "I'd take a tow to the tunnel."

Even though we didn't want to be where we were, we were actually very lucky to just be there right when the patrol car was there, right around all the vehicles that could get us  out of this mess.  I no longer needed to be afraid.  The patrol car blocked me; another department of transportation vehicle came and pushed me to the side of the road, and the tow truck hooked us to it and took us to the top.  What an experience to be in the van while being hooked up and towed.  It was like being tilted as if going up a roller coaster, to get set, and then put back down and towed, sternly instructed not to touch anything.

We made it home!  Going down from the tunnel there was still ice and snow for awhile.  But then there was nothing - dry roads.  Instead of 3 hours, it took us 5.5 hours to get home.  But we made it!

The skiing?  Well, the skiing was awesome.  It was a sunny day and the snow was a somewhat sticky, powdery mix, which was slow, but good for the first day of skiing.  I have trouble going left, and we found something to help correct that.  As I sat in the ski office during lunch, the ski program director noted that I always sit leaning left.  I had no idea!  I wish people would tell me these things that then interfere with skiing.   The ski instructor came up with a plan to put a small pad underneath my right side and voila!  The left turn was corrected.  The only problem is that now the right turn is a bit off.  But I can work through that.

So, beginning the ski season was interesting.  Every season seems so very different.  This one I will never forget because we got home safely, because we just happened to be in the right place at the right time to get help, and for that, I am thankful for all the people who work out in these storms, in miserable conditions, to try to keep our roads safe.


Friday, January 3, 2014


It's the time of year that we spend (spent) with our families - we meaning not me, but people in general.  Some families have "interesting" dynamics which might make spending time with them something that is really fun...  or not.  We, as Christians, or other religions, are also children of God and part of the family of God (there is better wording for this, but hopefully anyone who reads this gets the idea).  Thinking of both of these concepts of family (family as people related to us / extensions of that, and the family of God), I was thinking recently of my godparents, 4 of them, some still on earth, others who have moved beyond life on earth.

Many times I think babies are baptized, people are named as godparents, and life goes on.  I think I thought that until recently.  Godparents recite specific responsibilities, in words, on the day of a baptism.  Everyone is happy (except sometimes the babies!).  Everyone goes home.  Yay.  Done.  Check that off the to do list.  But many godparents go beyond that, and the roles they play, when they choose to do so, can be much larger than specific recited words.  When I think of my life, my godparents, though not directly involved in my faith for the most part, were (and are) a big part of my life.

I have 2 sets of godparents.  One set knew my mom through her university (initially) while the other knew my dad through his university (initially), or that's what I know, and it may be a bit different.  The set, or couple, through my mom, remembered to send me, every year for my birthday, a charm to add to a charm bracelet they had given me.   I couldn't wait to see what the next charm would be.  Their daughter was also named Beth, and to this day we debate which one of us is Beth #1 versus Beth #2 (She's Beth #1 because she is older, but she claims we are equal.   I'm fine with #2 and think we can still be equal). 

The other couple had/has 2 kids (now adults), close in age to the 3 of us in my family.  Our 2 families have always been close.  We spent every Thanksgiving and Christmas together growing up.  I played soccer and ran track with their daughter.  She lives in Germany but we get together when she is here (which is unexpectedly now, but we will get to see each other).  Every Thanksgiving and Christmas we would plot a get-away-from-parents strategy.  But first, lots of appetizers!  Then, dinner...  the shorter the better, with lots of food!  During dinner we would start to exchange glances - who was going to make the first move?  There was a movie and games elsewhere, away from this formal talking of dull grown-ups!  One kid would ask to be excused and we would all watch to see if it meant it was time.  And soon, we were off!  Games, movies, ..., did we have to leave?  Well, we knew we would see each other soon.  Those were the really great times.

Both couples have always been there for me during the good times and the bad - graduations, MS diagnosis, life with MS, sports, music, and the list goes on.  We only went to church together on the Sunday when I was confirmed (I could be wrong about that), but they influenced my life by the examples they set.  One continued to send Lori cards in the mail after she (my godmother) had a stroke; she had her stroke as I started Ampyra, so would watch my progress and compare it to hers.  In a sense we were on journeys together - improving.  But then the journeys diverged and for a bit, I struggled.  I knew she would want me to keep going, to keep getting better.  But I didn't know the journeys would diverge like that, and so there was a strange point when I felt a feeling of being alone, even while knowing she wouldn't want this.  I was stuck.  Gradually I moved on and continued my journey, subconsciously recognizing that 2 journeys cannot remain in parallel forever, and knowing she wants the best for me.

Another godparent was there when Lori was born.  My main nurse would tell me how it was impossible to keep my mom, my godmother, and my mother-in-law in the official waiting room because they were so excited.  On the day Lori was born, 2.5 weeks early, this godmother who came to the hospital was really supposed to be coming with my mom, to my house, to set up the baby room.  Plans change when babies come!  She smiled and was so happy for us all, and I was so happy she could be there.  As an adult I think I saw her more than as a child.  She visited me when I lived in Minnesota and was so happy to take the elevator with me, instead of the escalator, because she said she had always hated escalators and didn't feel comfortable using them.

And so family is inclusive of my godparents.  They taught me faith sometimes in the traditional way, but more often by just being there, by just being them.  What has been very difficult is a certain, sudden "role" switch - instead of being the one to follow, I am leading my life and they are in the background.  This realization of role-switching has come at unexpected, and always unwelcome times, feeling like punches in the stomach. 

Sometimes we must say goodbye, always before we are ready, for some reason never feeling right, feeling like it wasn't supposed to happen, even though that makes no sense.  It is difficult to tell people - oh, it's godparents - for many godparents didn't have such a large role - for many, they weren't family. But for me, they always were and are. I continue, wondering if I can be at all as incredibly wonderful as they have been.

And as this happens, I continue to search for what I think they wanted for me...