Fears and Conquests

That's how I began my sharing at last week's Support Group session.  The last month has been a mixture of both, sort of a combination of little steps backwards and big steps forward.  I suppose that as long as the backward steps are little and the forward steps big, I'm doing ok.

I'll start with the conquests, just like I did in Group.  First, I want to write how much I love being in this Group.  My original intent was to network with people on how to manage and survive these health challenges we all have.  But I'm getting so much more out of being there and getting to know them.  It's become a safe place to express the fears.  We all have the same fear - that of being a burden - but you don't really want to talk about it with anyone, for fear of becoming a burden just from talking about it.  But in this Group we all understand, we've all been there, and that creates a wonderful feeling of "being home", of being in a safe place where you're accepted and loved and understood.

Anyway, I finally turned 65.  And thanks to my sister Trish, I got to celebrate it.  We spent two glorious nights at the French Sofitel Hotel in Redwood Shores (as far away as you can get from where I live and still be in Redwood City!).  We left the hotel only once, to go to a luxurious spa less than a mile away (called Spa Luxe, strangely enough), where I was treated by Trish to a wonderful hour facial followed by an hour massage.  We were at the spa 4 hours!  We'd been planning to go to a restaurant outside the hotel for our second dinner, but we were so relaxed, neither of us felt like putting on makeup or leaving the hotel, so when we got back from the spa we went straight to the hotel bar and had cocktails and then another wonderful dinner.  I've posted a slide show that pretty much sums up our decadent birthday celebration.  If you click on one of the slides, it will take you to the web album with captions which will give you the full story.  Thank you so much, Trish.  It was very special.

I also am now officially insured by Medicare along with AARP (United Healthcare) - no more Kaiser.  I already have appointments with a new dermatologist and an MS specialist and have chosen a new primary physician, all of whom came highly recommended and have excellent reviews on the internet.  In getting my medical records forwarded to these new doctors, I found out that the last MRI I had done was in 1998.  This is the main reason I chose to leave Kaiser.  I find that outrageous.

I spent Thursday evening in San Francisco with Dennis and Linda and Michael and Francine.  Our old house on Ashbury Street is up for sale - listed at just under $3 million - and they suggested I come up and go to the wine and cheese open house there and then they'd take me out for dinner for my birthday.  I took the train up.  It made going up there so easy.  It's opened up a whole new world for me.  I've been reluctant to go to the city because I already drive so much, plus I hate the parking there.  But I love the city and the museums and theatres and restaurants and the friends I have there.  I think now I will go up much more often.  I'm very happy about that.  By the way, for those interested, there's a slide show of the house which the listing agent has put on the internet at http://www.908ashbury.com/.  Just be prepared - the owners have made a lot of changes and the staging is very modern.

Now for the fears.  I've already written how the MS is steadily getting worse.  I tire easily and don't seem to be able to walk very far without my legs getting heavy and my feet dragging.  Well, last Saturday I took a hot shower (which I normally do, I love hot showers), and for the first time, I felt the hot water affecting my legs.  My thighs began to go numb.  This numbness lasted for almost an entire week.  The nonprofit where I work had their annual gala fundraiser that evening and I was working at it, and I had to bring my cane.  Even with the cane, I had difficulty getting around.  Trish came with me and was an enormous help.  I continued to have problems walking until Thursday evening.

Now here's where it gets very interesting.  Thursday morning I had taken photos at the site of Edwin's current estate sale, which entailed going up and down stairs in an 8,000 sq ft house.  I was exhausted by the time I had to take the train for SF.  I rested on the train, but I was really dragging.  I somehow made it from the train to Francine's car where she was waiting to pick me up - I climbed up into the car - and when I turned to greet her and started talking, I noticed this instant transformation.  I went from being an exhausted, limp, drained shell of a gal to being an energetic, excited, happy, enthusiastic, non-stop talking and laughing whippersnapper.  Instantly!  If someone had been watching, they would have thought someone else had taken my place.  And I stayed that way.  I was able to go up and down the three flights of stairs at 908 Ashbury, take photos, tour the entire house, and then go to dinner.  I didn't even sleep on the train back.  In fact, I didn't even need my cane to walk to my car from the train.  I wrote in a previous post about my having the happiness gene.  I also seem to have the "people" gene.  I thrive when I'm with my friends.  I've noticed it when Carla comes up to watch a movie.  I'll be tired and lacking any energy, and then she comes up and I'm cracking jokes and laughing.

To get back to the fear part.  I was very worried that maybe I had progressed to a point of no return, with images of the dreaded wheelchair hovering on the edge of my consciousness, but now I feel NOT YET.  I just need to make sure that I keep seeing people.  It's too easy to collapse on my couch and watch tv or read.  I spend an inordinate amount of time doing that.  Maybe too much time.  There's a fine line between pacing yourself and becoming a hermit.  So that's my new resolution - to make more of an effort to get out and do things and see people.  All the while being reasonable and not overdoing it of course.

The other fear that keeps popping up in my mind is about finding new sources of income, where I can work out of my home or at least locally.   The stickers on my Prius expire this coming January.  I cannot do that commute to Milpitas if I can't use the commuter lane.  It would take me 2 hours to get home.  I need to start looking now.  Unfortunately, I will have to keep working the rest of my life.  I've accepted that.  I've never minded working.  It's been good for me this last year.  It's gotten me out of the house, it keeps my brain oiled, I enjoy being with people.  However, now that the MS is getting worse, for the first time I worry about being ABLE to keep working.

Another step backward concerns the divorce.  I'd assumed the divorce would become final on the 24th of March.  That's what the paperwork said.  But when I called the County Courthouse to make sure I could pick up a certified copy on the 24th, the clerk asked me what made me think it would be final then.  It turns out that the judge, instead of signing off on it, instead sent it on up to South San Francisco, which means there's some kind of problem.  What kind of problem I don't know.  So I'm left hanging in limbo.  This means that Medicare keeps getting to deduct an extra $178 a month from my Social Security.  Don't ask.  It's a long story.

However, I remain optimistic, I hold my head high, I force my back straight and I will those leg muscles to move.  I find new music that thrills me, I read new books which take me to far off lands, I make myself an apple martini.  Spring has sprung and Carla's garden is in glorious bloom.  I bought a beautiful frame today in which to hang the incredible photo which cousin Susan sent me.  Carla baked scrumptious "refrigerator cookies" today which we ate fresh out of the oven.  I refuse to look backwards and I won't hide from the future, and in the meantime I am enjoying the present.