Life just keeps getting better and better. You'd think I'd run out of news, but I don't. Every day seems to bring new adventures, fun times, challenges, surprises, delights, unexpected turns in the road. Where do I start?
I'll start with the Alexander Technique. Dana, the teacher I found, gave a presentation at our monthly MS lecture at Stanford this past Wednesday. She hadn't seen me since my initial half hour appointment in October and she was thrilled at the difference - in my posture, bearing and walking ability. I still have not used the cane since mid November. That doesn't mean there aren't some days when my right leg drags or my two legs are stiff and heavy. But I still manage without the cane. I had become dependent on it, and I didn't like that. I do still bring it with me, just in case, but it's been folded up in its pouch for over two months now. My MS doctor is going to write me a prescription for the series of 24 classes of the technique and hopefully Medicare will cover it. There has already been such a difference without my having even taken one full class! Dana said she thinks I picked it up so easily because I am so open to it.
I've had another day at a museum - this time the Post Impressionist exhibit at the de Young Museum in San Francisco. Carla and I drove into San Francisco to Andy Jacoby's house (one of my roommates from Cornell and a partner in crime from my first trip ever to Europe, summer of '65 - we first saw the Impressionists together at the Jeu de Paume museum in Paris that summer) for a delicious lunch lovingly prepared by her master chef husband Robert, and then the 4 of us went to the museum. There were 4 cardboard cutouts leading up the museum where you could stick your head through it for a Kodak instant photo op - I chose the one by Renoir, as you can see at the left. I wore my brace and I did have the cane with me for this occasion - I'm optimistic and positive, but not stupid. I wouldn't have made it through the exhibit without it. It was wonderful. Afterwards Carla and I went over to Michael and Francine's house for wine and cheese and a tour of their beautiful house for Carla. What was intended to be a brief visit turned into over 3 hours! It was a great end to a wonderful day.
I'm on a roll with contacting old friends on Facebook. Some of you will recognize the name Andy Vlady. We met when I was 14 and he was 16 in Great Neck and he's been in and out of my life ever since. It's because of him that I ended up going to Europe in the first place (he spent his junior year of college in Florence and came back with wondrous tales that filled my head and my heart), and also because of him that I went to Brazil (he introduced me to the Brazilian movie Black Orpheus back when we were in high school and I've been hooked on all things Brazilian ever since). He also introduced me to jazz (in addition to being an artist, he was also a jazz drummer). So he's played an important part in my life. He was passing through San Francisco for Russian Christmas with his Russian cousins on his way to Greece where he was going to show his latest collection of lithographs and we got together for lunch on January 6th. We hadn't seen each other since 1988, but we just picked up where we'd left off and talked nonstop for 5 hours until he had to return to his hotel to get ready for that evening's festivities. It was wonderful. As always, he regaled me with fascinating and wondrous tales.
I also found one of my closest friends from junior and senior high school, Judy Evans, although not on Facebook. Since Lyn Lederman had first discovered me and put me in touch with all these other classmates from Great Neck, I'd been wanting to find Judy. But she wasn't on Facebook. I tried all the search engines I could think of, but to no avail, since I didn't know her married name. However, miracle of miracles, I found a letter I'd received from her in 1989 with her married name, and then easily found her in Texas. We've been emailing each other regularly ever since and hope to actually see each other one of these days. I used to go over to her house after school and have fond memories of her parents and brother, and she knew my family, too. Other than my relatives, there aren't very many people in my life who knew my parents, so this is especially important to me. When I happened to mention my father's second wife, she hooted "Oh THAT woman!" I loved it.
And finally, one night when I couldn't sleep, I did a search for Paul Jaqua and easily found him on Facebook. We'd originally met in 1972 when I was living in Munich and he was part of a group of Californians tooling around Europe. We stayed in touch here in California when we both settled here, but I'd lost touch with him and hadn't spoken to him since the late 1990s. I emailed him and we spoke on the phone for 2 hours the next day. The amazing part is that he lives very close to my sister and Stan, so we will definitely be getting together soon.
There was another potluck lunch with my chronic illness support group up in the Redwoods. What a special group of people. Brian again played the bagpipes, Rob played the violin, and Marlene read one of her poems. I felt like I was part of a salon in Paris. I liked Marlene's poem so much that I asked her to email it to me. She sent me the link to a YouTube slide show with music that she'd created for this and 9 other of her poems. She has Parkinson's and her passion is skiing - which she still manages to do - and her poem is entitled Unbound Rapture. She gave me permission to post the link here: http://www.youtube.com/watch?v=8DYTf8asHhU I highly recommend that you take a look. It's filled with hope and beauty.
Liza gave me a birdfeeder for Christmas along with a huge sack of birdfeed. I've never had one before. She came over and hung it on my deck so I could see it from my bed. At first there was no activity, but then suddenly one day there were 4 birds at once, each one at a different opening, plus several squirrels on the deck scooping up the seed that fell. It's now two weeks later and I've already had to refill the feeder. I love lying in bed watching them fly to and fro, chirping happily as they munch away.
I had a dream about Wayne and Arlene last night, but it was a good dream. I dreamt that I ran into them somewhere and they were as friendly and warm as they used to be. I don't remember the details, but I remember the good feeling I had when I woke up. I've thought about it since then, and I think the meaning of the dream is that I'm finally ready to let go of the anger and the hurt that I've felt concerning them and to move on. Whenever I've been at the movies downtown or at Trader Joe's or anywhere public around here where I might run into them, I've worried what I might do or say, and whether they would just ignore me and move away. I'm not worried about it anymore. I only wish them the best and I choose just to concentrate on the good memories I have of them and all the wonderful things they did for me during that terrible time.
And finally, I have rejoined the world of Macdom! I am so excited. I found a used Macbook on Craigslist that is practically brand new. Now that I'm no longer a mortgage broker and thus no longer in need of real estate software, I can go back to my first love - the Mac. My Dell PC is over 7 years old and on its last legs, so it was time to start looking for a new computer and thus the perfect time to make the switch. I already have an iPod and an iPhone so I may as well make the family complete. I need to become proficient on the Mac anyway, since I've decided one of my new professions will be as a professional consultant helping people with their computers, specifically iTunes and music. I'm very good at it, most probably because it involves one of my passions - music - so why not make money at it. I spent 3 hours today helping my friend Judith and she agreed that I should pursue this. I'm going to get some business cards made up and she will help me pass them out. She's a professional and has many contacts. There's a whole community of people around my age who are just beginning to use iPads, iPhones, iPods and iTunes and they have never used a computer before except for emails. I still plan to also do freelance bookkeeping. I am in the process of brushing up my resume and will start looking in earnest once I return from New York.
Speaking of New York, this trip is fast approaching! I leave on February 10th and return on the 25th. I have been shopping for thermal underwear, plastic boots, hand and foot warmers in preparation for the cold and snow. Vickie at work even gave me a muff and is going to lend me her ultra warm coat (I didn't keep very much of my winter clothing, never dreaming I would ever go to New York in the winter). Little did I know.
Well, I think that's enough news for now. I will post again once I return from New York. This is my first big trip since my trip to Florida and Texas in April 2008. I'm very excited, in case you couldn't tell. Land of bagels and lox, here I come!
Saturday, January 22, 2011
Sunday, December 26, 2010
Another year ends, and a new one begins
And what a year this has been. So many wonderful things have happened - I joined Medicare and finally have good medical care, I've made new friends, I've resolved the problems of the stressful commute, I'm ready to travel again, I'm back in touch with long lost high school friends, my health has stabilized. Every day I count my blessings. Those years previous to my moving and having discovered Carla and the carriage house are but a distant memory. It's kind of like the breast cancer - most times I forget about it. When I go to have a mammogram and they ask me which side, I have to think about it and then check my bra!
I think the most exciting thing to have happened involves the MS. I wrote in a previous post about the Alexander Technique. Directly because of that, I have not used my cane since middle November. I realize now that I had become dependent on it and was using it even if I didn't have to. Of course, part of the reason for that was because it's so beautiful! Now, truth be told, there are some days when my legs are weak and I have trouble picking up my right foot. But I still manage without the cane. I've seen photos of myself with the cane and it's hard for me to recognize myself. That is not the image I want to have of myself. That's not to say that if there comes a day when I actually do need it, that I won't start using it again. I will. But not until then. I do still carry it with me, folded up in its little pouch, just in case, but so far I haven't had to take it out. Last week I took the train to the city again and this time Francine and I went to the Museum of Modern Art. I hadn't been there for many years. It was wonderful. We just saw one exhibit - the history of wine - but I managed the whole time without the cane. I did wear the brace, just in case again, but I think the next time I won't even wear that. Afterwards we went back to Francine's so I could see Michael, who looks great, and then Francine and I went to Linda's for dinner - another women's night out. What a treat. I really look forward to these events.
So - what exactly is the Alexander Technique? Here is a definition I found on the internet: "The Alexander Technique is a method that works to change (movement) habits in our everyday activities. It is a simple and practical method for improving ease and freedom of movement, balance, support and coordination. The technique teaches the use of the appropriate amount of effort for a particular activity, giving you more energy for all your activities. It is not a series of treatments or exercises, but rather a reeducation of the mind and body. The Alexander Technique is a method which helps a person discover a new balance in the body by releasing unnecessary tension. It can be applied to sitting, lying down, standing, walking, lifting, and other daily activities..." I'm still a novice. I've only had that one half hour free introduction with a certified teacher, plus a friend gave me a CD with instructions for doing what is called a Constructive Rest. This consists of lying on the floor with your legs up and arms outstretched and slowly relaxing all the muscles in your body, refocusing the energy flow, for about 10 minutes. I try to do this twice a day. It was easy for me because it is very similar to a meditation technique I learned years ago.
I want to take a series of classes from this teacher and so I am trying to get it covered by Medicare. In order to achieve this, I introduced this particular teacher to my MS doctor who puts on those monthly lectures I've written about (ie the naturopathic doctor, the yoga teacher, etc.). I've told her (Jong-mi) the benefits I've had just from the little that I've learned. Well, the exciting news is that Jong-mi has arranged for this teacher to do the presentation at the next lecture, on January 19th. I will be giving testimonials. Jong-mi has said she would write me a prescription and I'm hoping to get the classes covered under the mantle of physical therapy. I will let you all know what happens.
The next exciting event will take place in February - I'm going to New York! I've decided to go for two weeks instead of just one. Brenda was the one who convinced me to do that. She pointed out that I have MS and will be tired from the flights and from all the excitement of seeing everyone and that I have to build in some rest periods. I have lots of people I want to see, so that makes sense. I've already alerted Cynthia, Karin and Joan that I'm coming and also my cousin Susan who lives in upstate New York. I can't wait.
I have also promised my grandsons in the Seattle area that I will be coming to visit them before next Christmas. I haven't seen them for a long time and they're growing up so fast - Cameron will be graduating high school next year and going off to college! I called them yesterday and not only spoke to them, I also spoke to Elson at length. We had a nice friendly conversation, and therefore I feel confident that it won't be a problem when I'm up there. My next trip after that will be to L.A. and then hopefully France in the Fall with Carla. I'm on a roll!
You are probably wondering how I can take all this time off from work. Well, that is a very good question, and there are developments there as well. I love my job, I love the people and the work, I love working for Vickie. However, what I do not love is the commute and the inability to take off and travel whenever I want to. At this point it would be impossible for me to take more than two weeks off, and Carla and I want to stay at least three weeks in France. Also, the stickers on the Prius will finally expire in June, after which time I will no longer be able to use the commuter lane (shudder). I've already told Vickie that I do not want to do that commute once that happens. The good news is that Vickie has rehired a former employee to work part-time and take over the responsibilities that I currently have that are beyond bookkeeping. I was originally hired just to do bookkeeping and I ended up replacing three full-time people, handling human resources, administrative, personal assistant, etc. Then, once I am ready to leave, she can outsource the bookkeeping to a professional bookkeeping company.
However, all this means that my hours will be reduced and I will not be earning enough to cover my monthly expenses. So I have to get off my duff and start looking for work around here. I plan to look for bookkeeping, computer tutorial, iTunes assistance, etc. I need to put together a new resume and start networking. That is my new year's resolution.
I've had a wonderful holiday season. Two weekends ago I spent the weekend with Trish and Stan. On Saturday we celebrated Hannukah with Stan's family at his cousin's who lives in Half Moon Bay. On Sunday we went to a performance of the Christmas Revels at the Scottish Rite Temple in Oakland (Stan's brother-in-law is always one of the performers) followed by a Chinese banquet. Then last weekend Trish came and stayed with me and we went to a performance of the Meshugah Nutcracker. I want to make this an annual event. It travels every year to Seattle, Phoenix and Los Angeles before coming back to its birthplace, San Jose. Here's a description of it: This celebrated musical mixes the familiar score of Tchaikovsky's Nutcracker Suite with witty lyrics and traditional Jewish songs all celebrating Judah Maccabee and the holiday for which he is known. Eight top-notch performers sing while dancing in life-sized dreidel costumes, all while telling eight stories celebrating Chanukah. As reviewed by the L.A. Times, "this lovingly loopy musical is a treat for the whole family." This musical was created so that Jews could have something festive to do on Christmas besides the usual movie and Chinese food!
Christmas Eve Carla and I went to a friend's house for dinner and to watch the final two episodes of Dexter. The three of us have been watching the current season together, alternating at whose house, with it always including dinner. We've enjoyed this so much that we've decided to continue the tradition and will start with Showtime's new series Shameless which starts in January.
Christmas day I was invited to Liza's house for dinner. Carla went to her daughter's in Petaluma and so wasn't there. It was lovely. There was just family there - Liza and Frank, their daughter Gaby and their son Anthony along with his girlfriend Tony, Liza's mother Alice and her sister Maura, and me. I felt right at home there, because they have made me feel a part of their family. I think it was one of the best Christmases I've ever spent.
Carla got back from Petaluma this evening and invited me for some wine and some goodies from a Harry and David box she'd gotten from her grandson. We exchanged stories from the last two days and showed each other our gifts. I'd missed her and was glad to have her home. Because the carriage house is my home. Whenever one of us returns to it (ie when I get back from work, or this evening when she got back from Petaluma), we cry out "honey, I'm home!"
What a long way I have come in just 3 years. Three years ago on January 16th I dropped Elson off at the prison and returned to a house filled to the rafters with STUFF and to sleepless nights filled with fear - how would I manage financially, if I were to move how would I find a place that wouldn't be even more depressing, how would I get rid of all this STUFF. As the weight dropped off until I was a gaunt 97 lbs due to the stress and fears, I literally could not envisage a future for myself, much less a happy and fulfilling one.
And yet. And yet. I live in this wonderful, enchanting carriage house, with a wonderful landlady who has become my dearest friend, I have made new friends like Liza who seems like she's been in my life forever and who has welcomed me into her family, I've become good friends with Liza's sister Maura, I am constantly finding new treatments and tools for dealing with the MS, I am starting to travel again, I feel younger and lighter than I have in a very long time. I am looking forward to the new year and to new discoveries, new friends, new adventures.
I know I've said it before, but I'll say it again. I couldn't have done it without the love and support of all my wonderful friends. I didn't do it alone. And even though I live alone, I don't FEEL like I'm alone. I feel loved and surrounded. I think that is what I am most grateful for.
I wish you all a Happy and Joyful New Year. I raise my apple martini glass to you and look towards the future with joy and anticipation.
I think the most exciting thing to have happened involves the MS. I wrote in a previous post about the Alexander Technique. Directly because of that, I have not used my cane since middle November. I realize now that I had become dependent on it and was using it even if I didn't have to. Of course, part of the reason for that was because it's so beautiful! Now, truth be told, there are some days when my legs are weak and I have trouble picking up my right foot. But I still manage without the cane. I've seen photos of myself with the cane and it's hard for me to recognize myself. That is not the image I want to have of myself. That's not to say that if there comes a day when I actually do need it, that I won't start using it again. I will. But not until then. I do still carry it with me, folded up in its little pouch, just in case, but so far I haven't had to take it out. Last week I took the train to the city again and this time Francine and I went to the Museum of Modern Art. I hadn't been there for many years. It was wonderful. We just saw one exhibit - the history of wine - but I managed the whole time without the cane. I did wear the brace, just in case again, but I think the next time I won't even wear that. Afterwards we went back to Francine's so I could see Michael, who looks great, and then Francine and I went to Linda's for dinner - another women's night out. What a treat. I really look forward to these events.
So - what exactly is the Alexander Technique? Here is a definition I found on the internet: "The Alexander Technique is a method that works to change (movement) habits in our everyday activities. It is a simple and practical method for improving ease and freedom of movement, balance, support and coordination. The technique teaches the use of the appropriate amount of effort for a particular activity, giving you more energy for all your activities. It is not a series of treatments or exercises, but rather a reeducation of the mind and body. The Alexander Technique is a method which helps a person discover a new balance in the body by releasing unnecessary tension. It can be applied to sitting, lying down, standing, walking, lifting, and other daily activities..." I'm still a novice. I've only had that one half hour free introduction with a certified teacher, plus a friend gave me a CD with instructions for doing what is called a Constructive Rest. This consists of lying on the floor with your legs up and arms outstretched and slowly relaxing all the muscles in your body, refocusing the energy flow, for about 10 minutes. I try to do this twice a day. It was easy for me because it is very similar to a meditation technique I learned years ago.
I want to take a series of classes from this teacher and so I am trying to get it covered by Medicare. In order to achieve this, I introduced this particular teacher to my MS doctor who puts on those monthly lectures I've written about (ie the naturopathic doctor, the yoga teacher, etc.). I've told her (Jong-mi) the benefits I've had just from the little that I've learned. Well, the exciting news is that Jong-mi has arranged for this teacher to do the presentation at the next lecture, on January 19th. I will be giving testimonials. Jong-mi has said she would write me a prescription and I'm hoping to get the classes covered under the mantle of physical therapy. I will let you all know what happens.
The next exciting event will take place in February - I'm going to New York! I've decided to go for two weeks instead of just one. Brenda was the one who convinced me to do that. She pointed out that I have MS and will be tired from the flights and from all the excitement of seeing everyone and that I have to build in some rest periods. I have lots of people I want to see, so that makes sense. I've already alerted Cynthia, Karin and Joan that I'm coming and also my cousin Susan who lives in upstate New York. I can't wait.
I have also promised my grandsons in the Seattle area that I will be coming to visit them before next Christmas. I haven't seen them for a long time and they're growing up so fast - Cameron will be graduating high school next year and going off to college! I called them yesterday and not only spoke to them, I also spoke to Elson at length. We had a nice friendly conversation, and therefore I feel confident that it won't be a problem when I'm up there. My next trip after that will be to L.A. and then hopefully France in the Fall with Carla. I'm on a roll!
You are probably wondering how I can take all this time off from work. Well, that is a very good question, and there are developments there as well. I love my job, I love the people and the work, I love working for Vickie. However, what I do not love is the commute and the inability to take off and travel whenever I want to. At this point it would be impossible for me to take more than two weeks off, and Carla and I want to stay at least three weeks in France. Also, the stickers on the Prius will finally expire in June, after which time I will no longer be able to use the commuter lane (shudder). I've already told Vickie that I do not want to do that commute once that happens. The good news is that Vickie has rehired a former employee to work part-time and take over the responsibilities that I currently have that are beyond bookkeeping. I was originally hired just to do bookkeeping and I ended up replacing three full-time people, handling human resources, administrative, personal assistant, etc. Then, once I am ready to leave, she can outsource the bookkeeping to a professional bookkeeping company.
However, all this means that my hours will be reduced and I will not be earning enough to cover my monthly expenses. So I have to get off my duff and start looking for work around here. I plan to look for bookkeeping, computer tutorial, iTunes assistance, etc. I need to put together a new resume and start networking. That is my new year's resolution.
I've had a wonderful holiday season. Two weekends ago I spent the weekend with Trish and Stan. On Saturday we celebrated Hannukah with Stan's family at his cousin's who lives in Half Moon Bay. On Sunday we went to a performance of the Christmas Revels at the Scottish Rite Temple in Oakland (Stan's brother-in-law is always one of the performers) followed by a Chinese banquet. Then last weekend Trish came and stayed with me and we went to a performance of the Meshugah Nutcracker. I want to make this an annual event. It travels every year to Seattle, Phoenix and Los Angeles before coming back to its birthplace, San Jose. Here's a description of it: This celebrated musical mixes the familiar score of Tchaikovsky's Nutcracker Suite with witty lyrics and traditional Jewish songs all celebrating Judah Maccabee and the holiday for which he is known. Eight top-notch performers sing while dancing in life-sized dreidel costumes, all while telling eight stories celebrating Chanukah. As reviewed by the L.A. Times, "this lovingly loopy musical is a treat for the whole family." This musical was created so that Jews could have something festive to do on Christmas besides the usual movie and Chinese food!
Christmas Eve Carla and I went to a friend's house for dinner and to watch the final two episodes of Dexter. The three of us have been watching the current season together, alternating at whose house, with it always including dinner. We've enjoyed this so much that we've decided to continue the tradition and will start with Showtime's new series Shameless which starts in January.
Christmas day I was invited to Liza's house for dinner. Carla went to her daughter's in Petaluma and so wasn't there. It was lovely. There was just family there - Liza and Frank, their daughter Gaby and their son Anthony along with his girlfriend Tony, Liza's mother Alice and her sister Maura, and me. I felt right at home there, because they have made me feel a part of their family. I think it was one of the best Christmases I've ever spent.
Carla got back from Petaluma this evening and invited me for some wine and some goodies from a Harry and David box she'd gotten from her grandson. We exchanged stories from the last two days and showed each other our gifts. I'd missed her and was glad to have her home. Because the carriage house is my home. Whenever one of us returns to it (ie when I get back from work, or this evening when she got back from Petaluma), we cry out "honey, I'm home!"
What a long way I have come in just 3 years. Three years ago on January 16th I dropped Elson off at the prison and returned to a house filled to the rafters with STUFF and to sleepless nights filled with fear - how would I manage financially, if I were to move how would I find a place that wouldn't be even more depressing, how would I get rid of all this STUFF. As the weight dropped off until I was a gaunt 97 lbs due to the stress and fears, I literally could not envisage a future for myself, much less a happy and fulfilling one.
And yet. And yet. I live in this wonderful, enchanting carriage house, with a wonderful landlady who has become my dearest friend, I have made new friends like Liza who seems like she's been in my life forever and who has welcomed me into her family, I've become good friends with Liza's sister Maura, I am constantly finding new treatments and tools for dealing with the MS, I am starting to travel again, I feel younger and lighter than I have in a very long time. I am looking forward to the new year and to new discoveries, new friends, new adventures.
I know I've said it before, but I'll say it again. I couldn't have done it without the love and support of all my wonderful friends. I didn't do it alone. And even though I live alone, I don't FEEL like I'm alone. I feel loved and surrounded. I think that is what I am most grateful for.
I wish you all a Happy and Joyful New Year. I raise my apple martini glass to you and look towards the future with joy and anticipation.
Friday, October 29, 2010
You Can Take The New Yorker Out of New York, but......
Well, I'm discovering this old saying has a lot of truth in it. I'm really having fun spending time with all these fellow New Yorkers - some from my youth and High School, some new friends I've made out here. It's kind of like I've come home. I've been running away from my past and my childhood and my roots all my life, and now I've come full circle and am finally embracing all of it. It's allowed me to become a full person for the first time ever, merging my beginnings with my journeys and various paths I've taken, and blossoming into the this amalgam that I now am. I've never felt so "good in my skin" as the French say. It's as though it was always meant to come to this, to the carriage house in Redwood City, where I am finally able to be me, whoever that is.
I know I haven't posted for quite a while, but it's for a good reason - I've been busy! Busy working and busy playing. The MS drug Ampyra has given me my life back. I still get tired, but not like before. As long as I remember to pace myself, give myself a free day or evening every now and then, I do fine. I think the most exciting thing that has happened in the last two months is that I spent a wonderful day in San Francisco with Francine. She picked me up at the train station and we went straight to the new Academy of Sciences museum in Golden Gate Park. The Aquarium and Planetarium has only been open 5 years and I never thought I would ever get to see it. Well, not only did I see it, I saw the whole thing (the Aquarium anyway), on my legs, vertical, with only the use of my cane and my new brace. I was ecstatic. We spent 2 1/2 hours in the museum, then went to Francine's house for a lovely dinner on their back deck, joined by Linda Hom, and then I took the train home and was still filled with energy. Now that is a miracle. The next test will be the Impressionist exhibit at the De Young Museum. Carla, Liza, Maura and I are planning to go and I'm hoping it will be a repeat performance. The prior two times I went to that museum (once with this same group and once with my college roommate Andrea), I had to be pushed around in a wheelchair. They didn't mind, but I did.
Speaking of college roommates, there is an exciting reunion looming on the horizon. There were three of us at Cornell - we were roommates our sophomore year, shared an apartment senior year, studied at the Sorbonne in Paris the summer after our sophomore year and then traveled for 6 weeks on a Eurail Pass, then the three of us went to the French Riviera after graduation, after which Joanne and I moved together into an apartment in Paris and Andrea returned to the U.S. Andrea now lives in San Francisco, but Joanne lives in Wisconsin. We've had reunions before when Joanne would come to San Francisco, but this time it's a REAL reunion in that all three of us are spending the night at Andrea's. This will be the first time we've ever all three of us spent the night together since France. What a treat. This will be on November 16th.
Life just keeps getting better and better. I'm feeling so good inside that I've decided to work on my outside. I wrote earlier about my having gone back to getting my nails done on a regular basis. Well, now I've also gone back to getting my hair cut professionally. And I'm now having my apartment cleaned professionally - well, actually better than professionally. Maura, Liza's sister who moved out here from Arkansas to live with Liza and help care for their mother, and I have become good friends and when she heard I was going to hire professional cleaners, she volunteered to do it. For pay, of course. But am I getting a good deal! Not only is my apartment sparkling, she keeps adding little touches, ie bringing over cute baskets to put things in, rearranging things so they look neater, etc. I love it. I was pretty religious about keeping everything clean when I first moved in, but have not been able to keep it up because of the fatigue. So I finally bit the bullet and decided to rearrange some of my expenses to allow for all of this. And boy is it worth it. So now my outside and my surroundings are starting to feel and look as good as my inside.
I'm also finally ready to start traveling again. People have been urging me to come visit ever since I moved - Brenda in Seattle, Evelyn and Art in L.A., the gang in N.Y., Kate in Texas. I just wasn't up to it, plus I didn't know how I would do with the MS which had gotten worse, and the rules and regulations of travel nowadays which have also gotten worse. I had promised Carla we would go to France together this past Spring and I backed out of that as well. But now I am mentally ready. I've always loved to travel and couldn't understand why I kept avoiding it. I now promise everyone I will eventually get there in the next two years. My first planned trip is this March to New York. I can't even remember the last time I saw the gang - Karin, Cynthia, Joan and Marv. Then I've promised Carla we will go to France later in the Spring, probably late May. We're going to start looking at our ticket options. I also need to contact my cousin Martine and my good friend Rick to make sure they will be there, as we will be staying with them. And finally, I will talk to Brenda as to when a good time would be for me to come up and see her and my two adorable grandsons. This will be all in the next year. Wow. Time is a wastin' and I don't want to put it off any longer. No one knows what the future holds.
I had a bone density test done last week and just received the following results from my doctor: Hello Laurel! Your bone density is surprisingly good at all sites! You have mild to moderate osteopenia at the hip with really minimal osteopenia at the spine. I am pleasantly surprised! However, because of your fall risk, I am inclined to recommend treatment with either an oral bisphosphonate given weekly or monthly (like Fosamax or Actonel) or the one given intravenously (every other year for osteopenia). I would understand if you are hesitant to take one of these medications and I am happy to discuss this further with you by phone or in person. At the very least, it is important for you to get adequate calcium and D as we discussed and to minimize your risk of falling. Please contact me with questions. It was a pleasure to have met with you! I also saw my regular doctor and my blood pressure is 108/72, BMI is 19.20, and pulse is 68 beats per minute (whatever that means). In other words, other than the MS, I am in perfect health. Not bad for a senior citizen.
Speaking of being a senior citizen, I am thrilled with all the new doctors I now have since leaving the HMO and joining Medicare. The above doctor is an endocrinologist; I have a wonderful internal medicine doctor thanks to Kimberly; a great MS doctor thanks to my cousin Dana (his staff puts on monthly evening lectures for his patients and so far we've had a naturopathic doctor, a yoga for MS instructor from New Yawk, Art as Therapy and then this week Sex and Relationships with a Disability); and a wonderful dermatologist who not only has helped clear up my skin and scalp problems but also gives me tons of free samples so I don't have to buy anything.
I'm going to end this posting with a quote from the latest Reflective Reading from the support group I mentioned in an earlier email, on Rippling and Gratitude. I think you'll like it,
Reflective material. On September 27 of this year I included an excerpt from Irvin Yalom's Staring At the Sun that featured his definition of "rippling." To make the best sense of this week's reflective material from the same author, it is important to have his notion of rippling clearly in mind, so I'm going to repeat it here: "Rippling refers to the fat that each of us creates—often without our conscious intent or knowledge—concentric circles of influence that may affect others for years, even for generations. That is, the effect we have on other people is in turn passed on to others, much as the ripples in a pond go on and on until they're no longer visible but continuing at a nano level." (page 83)
What follows are Yalom's comments on gratitude, especially as they relate to some of the "ripples" that have benefitted us: "Far too often, gratitude for how a person has sent influential ripples out into the world is expressed not when the person is still alive but only in a posthumous eulogy. How many times at funerals have you wished (or overheard others express the wish) that the dead person were there to hear the eulogies and expressions of gratitude? How many of us have wished we could be like Scrooge and eavesdrop on our own funeral? I have.
"One technique for overcoming this 'too little, too late' problem with rippling is the 'gratitude visit,' a splendid way to enhance rippling when one is alive. I first came upon this exercise at a workshop conducted by Martin Seligman, one of the leaders of the positive psychology movement. He asked a large audience to participate in an exercise that, as I recall, went along these lines: "Think of someone still living toward whom you feel great gratitude that you have never expressed. Spend ten minutes writing that person a gratitude letter and then pair up with someone here, and each of you read your letter to the other. The final step is that you pay a personal visit to that person sometime in the near future and read that letter aloud.
"After the letters were read in pairs, several volunteers . . . read their letters aloud to the entire audience. Without exception, each person choked up with emotion during the reading. . . .
"I did the exercise myself and wrote such a letter to David Hamburg, who had been a superbly enabling chairman of the Department of Psychiatry during my first ten years at Stanford. When I next visited New York, where he lived at this time, we spent a moving evening together. I felt good expressing my gratitude, and he felt good about knowing of it; he said he had beamed with pleasure when reading my letter.
"As I age, I think more and more about rippling. As [the head of a family], I always pick up the check when my family dines at a restaurant. My four children always thank me graciously (after offering only feeble resistance), and I always say to them, 'Thank your grandfather Ben Yalom. I'm only a vessel passing on his generosity. He always picked up the check for me.' (And I, by the way, also offered only feeble resistance.) (pages 135-136)
I have included this excerpt as my way of thanking all of you have been such a wonderful support to me the last few years. I know I will pass it on in the tradition of Rippling.
I know I haven't posted for quite a while, but it's for a good reason - I've been busy! Busy working and busy playing. The MS drug Ampyra has given me my life back. I still get tired, but not like before. As long as I remember to pace myself, give myself a free day or evening every now and then, I do fine. I think the most exciting thing that has happened in the last two months is that I spent a wonderful day in San Francisco with Francine. She picked me up at the train station and we went straight to the new Academy of Sciences museum in Golden Gate Park. The Aquarium and Planetarium has only been open 5 years and I never thought I would ever get to see it. Well, not only did I see it, I saw the whole thing (the Aquarium anyway), on my legs, vertical, with only the use of my cane and my new brace. I was ecstatic. We spent 2 1/2 hours in the museum, then went to Francine's house for a lovely dinner on their back deck, joined by Linda Hom, and then I took the train home and was still filled with energy. Now that is a miracle. The next test will be the Impressionist exhibit at the De Young Museum. Carla, Liza, Maura and I are planning to go and I'm hoping it will be a repeat performance. The prior two times I went to that museum (once with this same group and once with my college roommate Andrea), I had to be pushed around in a wheelchair. They didn't mind, but I did.
Speaking of college roommates, there is an exciting reunion looming on the horizon. There were three of us at Cornell - we were roommates our sophomore year, shared an apartment senior year, studied at the Sorbonne in Paris the summer after our sophomore year and then traveled for 6 weeks on a Eurail Pass, then the three of us went to the French Riviera after graduation, after which Joanne and I moved together into an apartment in Paris and Andrea returned to the U.S. Andrea now lives in San Francisco, but Joanne lives in Wisconsin. We've had reunions before when Joanne would come to San Francisco, but this time it's a REAL reunion in that all three of us are spending the night at Andrea's. This will be the first time we've ever all three of us spent the night together since France. What a treat. This will be on November 16th.
Life just keeps getting better and better. I'm feeling so good inside that I've decided to work on my outside. I wrote earlier about my having gone back to getting my nails done on a regular basis. Well, now I've also gone back to getting my hair cut professionally. And I'm now having my apartment cleaned professionally - well, actually better than professionally. Maura, Liza's sister who moved out here from Arkansas to live with Liza and help care for their mother, and I have become good friends and when she heard I was going to hire professional cleaners, she volunteered to do it. For pay, of course. But am I getting a good deal! Not only is my apartment sparkling, she keeps adding little touches, ie bringing over cute baskets to put things in, rearranging things so they look neater, etc. I love it. I was pretty religious about keeping everything clean when I first moved in, but have not been able to keep it up because of the fatigue. So I finally bit the bullet and decided to rearrange some of my expenses to allow for all of this. And boy is it worth it. So now my outside and my surroundings are starting to feel and look as good as my inside.
I'm also finally ready to start traveling again. People have been urging me to come visit ever since I moved - Brenda in Seattle, Evelyn and Art in L.A., the gang in N.Y., Kate in Texas. I just wasn't up to it, plus I didn't know how I would do with the MS which had gotten worse, and the rules and regulations of travel nowadays which have also gotten worse. I had promised Carla we would go to France together this past Spring and I backed out of that as well. But now I am mentally ready. I've always loved to travel and couldn't understand why I kept avoiding it. I now promise everyone I will eventually get there in the next two years. My first planned trip is this March to New York. I can't even remember the last time I saw the gang - Karin, Cynthia, Joan and Marv. Then I've promised Carla we will go to France later in the Spring, probably late May. We're going to start looking at our ticket options. I also need to contact my cousin Martine and my good friend Rick to make sure they will be there, as we will be staying with them. And finally, I will talk to Brenda as to when a good time would be for me to come up and see her and my two adorable grandsons. This will be all in the next year. Wow. Time is a wastin' and I don't want to put it off any longer. No one knows what the future holds.
I had a bone density test done last week and just received the following results from my doctor: Hello Laurel! Your bone density is surprisingly good at all sites! You have mild to moderate osteopenia at the hip with really minimal osteopenia at the spine. I am pleasantly surprised! However, because of your fall risk, I am inclined to recommend treatment with either an oral bisphosphonate given weekly or monthly (like Fosamax or Actonel) or the one given intravenously (every other year for osteopenia). I would understand if you are hesitant to take one of these medications and I am happy to discuss this further with you by phone or in person. At the very least, it is important for you to get adequate calcium and D as we discussed and to minimize your risk of falling. Please contact me with questions. It was a pleasure to have met with you! I also saw my regular doctor and my blood pressure is 108/72, BMI is 19.20, and pulse is 68 beats per minute (whatever that means). In other words, other than the MS, I am in perfect health. Not bad for a senior citizen.
Speaking of being a senior citizen, I am thrilled with all the new doctors I now have since leaving the HMO and joining Medicare. The above doctor is an endocrinologist; I have a wonderful internal medicine doctor thanks to Kimberly; a great MS doctor thanks to my cousin Dana (his staff puts on monthly evening lectures for his patients and so far we've had a naturopathic doctor, a yoga for MS instructor from New Yawk, Art as Therapy and then this week Sex and Relationships with a Disability); and a wonderful dermatologist who not only has helped clear up my skin and scalp problems but also gives me tons of free samples so I don't have to buy anything.
I'm going to end this posting with a quote from the latest Reflective Reading from the support group I mentioned in an earlier email, on Rippling and Gratitude. I think you'll like it,
Reflective material. On September 27 of this year I included an excerpt from Irvin Yalom's Staring At the Sun that featured his definition of "rippling." To make the best sense of this week's reflective material from the same author, it is important to have his notion of rippling clearly in mind, so I'm going to repeat it here: "Rippling refers to the fat that each of us creates—often without our conscious intent or knowledge—concentric circles of influence that may affect others for years, even for generations. That is, the effect we have on other people is in turn passed on to others, much as the ripples in a pond go on and on until they're no longer visible but continuing at a nano level." (page 83)
What follows are Yalom's comments on gratitude, especially as they relate to some of the "ripples" that have benefitted us: "Far too often, gratitude for how a person has sent influential ripples out into the world is expressed not when the person is still alive but only in a posthumous eulogy. How many times at funerals have you wished (or overheard others express the wish) that the dead person were there to hear the eulogies and expressions of gratitude? How many of us have wished we could be like Scrooge and eavesdrop on our own funeral? I have.
"One technique for overcoming this 'too little, too late' problem with rippling is the 'gratitude visit,' a splendid way to enhance rippling when one is alive. I first came upon this exercise at a workshop conducted by Martin Seligman, one of the leaders of the positive psychology movement. He asked a large audience to participate in an exercise that, as I recall, went along these lines: "Think of someone still living toward whom you feel great gratitude that you have never expressed. Spend ten minutes writing that person a gratitude letter and then pair up with someone here, and each of you read your letter to the other. The final step is that you pay a personal visit to that person sometime in the near future and read that letter aloud.
"After the letters were read in pairs, several volunteers . . . read their letters aloud to the entire audience. Without exception, each person choked up with emotion during the reading. . . .
"I did the exercise myself and wrote such a letter to David Hamburg, who had been a superbly enabling chairman of the Department of Psychiatry during my first ten years at Stanford. When I next visited New York, where he lived at this time, we spent a moving evening together. I felt good expressing my gratitude, and he felt good about knowing of it; he said he had beamed with pleasure when reading my letter.
"As I age, I think more and more about rippling. As [the head of a family], I always pick up the check when my family dines at a restaurant. My four children always thank me graciously (after offering only feeble resistance), and I always say to them, 'Thank your grandfather Ben Yalom. I'm only a vessel passing on his generosity. He always picked up the check for me.' (And I, by the way, also offered only feeble resistance.) (pages 135-136)
I have included this excerpt as my way of thanking all of you have been such a wonderful support to me the last few years. I know I will pass it on in the tradition of Rippling.
Monday, August 30, 2010
Irony In Motion
I love irony, and I was a living manifestation of it this morning while driving to work. As I've mentioned here before, I am studying the music for the High Holy Days at the Temple here in Redwood City and as a result of that, I will be at all the services (all except one which is on the same evening as a lecture on new emerging therapies for MS which I plan to attend). Well, as I was driving to work, I was listening to the music of one of my most recent musical discoveries - Straight No Chaser (10 acapella men who have been singing together since 1996 when they met at college - Liza told me about them), and some of the tunes happen to be Christmas carols. Now I love Christmas carols - I know all the lyrics and harmonies because we used to celebrate Christmas and that was one of my favorite parts - and as I was singing along at the top of my voice, cruising along the freeway, I was struck by the irony of it all. I don't know if irony is the correct expression, but in any case, what a wonderful metaphor for who I am - Christmas music today, Jewish music tomorrow, who knows what on Wednesday? Irony, dicohotomy, who cares, I love it.
Now you might wonder why we celebrated Christmas, since most of you know I am Jewish with the family name of Droshnicop. It's because we had a wonderful mother who was very universal in her religious beliefs. What mattered to her was the joy and the love. That meant we celebrated all the holidays that involved celebrating and eating - Christmas, Easter, Passover. We had a Christmas tree which we decorated on Christmas Eve while listening to/watching Amahl And The Night Visitors on tv (don't you dare, don't you dare, don't you dare touch my mother, tra la la), we had a Santa Claus face on our front door which lit up, we had colored lights on the trees on either side of the front door, and we had our own traditions for exchanging presents - three for each of us. We'd go shopping in the evenings with her while most families were home having dinner. We'd go into the dining room two at a time to wrap the presents for the other members of our family. We'd play the piano and sing Christmas carols. All of us except our father, who disapproved of and disliked all of it. His only concession was to come in and sing Good King Wenceslas, offkey. Why that particular carol I have no idea. Easter was fun, too. We'd color Easter eggs and she'd hide them, and there would be baskets filled with fake grass, jelly beans, and little goodies into which we would then place the eggs we found hidden the next morning. Passover was the traditional meal with the symbols and the Haggadahs and the singing and the drinking of wine (grape juice for us). The main thing is that everything was fun.
So my trip down the freeway this morning led to a trip down Memory Lane.
A wonderful honor has been bestowed upon me. A friend from the Support Group, who has a beautiful blog called Musing by Moonlight (I recommend it to everyone - her name is Jamie Dedes and she is a writer and a poet and ray of light - the link is http://musingbymoonlight.com/), has give me two Blog awards - one is The Elegant Blog Award and, the one I'm most excited about, The Singing In The Rain Award. When I asked her what that meant, she responded: as in doing fun stuff and smiling even though the clouds are out and the rain sometimes pours down (as in our health challenges et al.) Isn't that great? I accept that one proudly!
Speaking of Jamie, she described our Support Group on her blog so perfectly that I would like to include it here. I asked her permission which she granted on the condition that I add the following: copyright Jamie Dedes 2010 all rights reserved. As I said, she is a writer and needs to protect her words, which I understand and respect. Here is what she wrote:
My other much beloved quality-of-life saver is my Group. Of course, it’s not mine. It’s ours. This is a Group that is sponsored by a Buddhist center near home. Its members all have life-threatening illnesses, yet lead productive and joy-filled lives while buying time. We are led by the dearest, kindest human being, a Buddhist chaplain, whose kindness is so deep and consistent I tear to think about it and him. The Group is composed of people from all different religious traditions. Buddhism doesn’t seek to proselytize and does respect all religions, so this is possible. The diversity just serves to enrich the experience. Each of us knows inherently that our illness can be a spiritual path if we choose to use it that way … and we do. That’s one of the things I love about us. I wanted a group that was spiritually based, not medically based. I believe this whole trip called “life” is a spiritual exercise not a material one. So this Group is consistent with my personal philosophy and value. The Group has turned out to be one of the great joys of my life. Each person within it is heroic, generous, compassionate, and very, very dear.
I couldn't have said it any better. Now you can see how lucky I am.
It's time for Poker Night. Enough of this philosophizing, I'm going to go have some fun!
Now you might wonder why we celebrated Christmas, since most of you know I am Jewish with the family name of Droshnicop. It's because we had a wonderful mother who was very universal in her religious beliefs. What mattered to her was the joy and the love. That meant we celebrated all the holidays that involved celebrating and eating - Christmas, Easter, Passover. We had a Christmas tree which we decorated on Christmas Eve while listening to/watching Amahl And The Night Visitors on tv (don't you dare, don't you dare, don't you dare touch my mother, tra la la), we had a Santa Claus face on our front door which lit up, we had colored lights on the trees on either side of the front door, and we had our own traditions for exchanging presents - three for each of us. We'd go shopping in the evenings with her while most families were home having dinner. We'd go into the dining room two at a time to wrap the presents for the other members of our family. We'd play the piano and sing Christmas carols. All of us except our father, who disapproved of and disliked all of it. His only concession was to come in and sing Good King Wenceslas, offkey. Why that particular carol I have no idea. Easter was fun, too. We'd color Easter eggs and she'd hide them, and there would be baskets filled with fake grass, jelly beans, and little goodies into which we would then place the eggs we found hidden the next morning. Passover was the traditional meal with the symbols and the Haggadahs and the singing and the drinking of wine (grape juice for us). The main thing is that everything was fun.
So my trip down the freeway this morning led to a trip down Memory Lane.
A wonderful honor has been bestowed upon me. A friend from the Support Group, who has a beautiful blog called Musing by Moonlight (I recommend it to everyone - her name is Jamie Dedes and she is a writer and a poet and ray of light - the link is http://musingbymoonlight.com/), has give me two Blog awards - one is The Elegant Blog Award and, the one I'm most excited about, The Singing In The Rain Award. When I asked her what that meant, she responded: as in doing fun stuff and smiling even though the clouds are out and the rain sometimes pours down (as in our health challenges et al.) Isn't that great? I accept that one proudly!
Speaking of Jamie, she described our Support Group on her blog so perfectly that I would like to include it here. I asked her permission which she granted on the condition that I add the following: copyright Jamie Dedes 2010 all rights reserved. As I said, she is a writer and needs to protect her words, which I understand and respect. Here is what she wrote:
My other much beloved quality-of-life saver is my Group. Of course, it’s not mine. It’s ours. This is a Group that is sponsored by a Buddhist center near home. Its members all have life-threatening illnesses, yet lead productive and joy-filled lives while buying time. We are led by the dearest, kindest human being, a Buddhist chaplain, whose kindness is so deep and consistent I tear to think about it and him. The Group is composed of people from all different religious traditions. Buddhism doesn’t seek to proselytize and does respect all religions, so this is possible. The diversity just serves to enrich the experience. Each of us knows inherently that our illness can be a spiritual path if we choose to use it that way … and we do. That’s one of the things I love about us. I wanted a group that was spiritually based, not medically based. I believe this whole trip called “life” is a spiritual exercise not a material one. So this Group is consistent with my personal philosophy and value. The Group has turned out to be one of the great joys of my life. Each person within it is heroic, generous, compassionate, and very, very dear.
I couldn't have said it any better. Now you can see how lucky I am.
It's time for Poker Night. Enough of this philosophizing, I'm going to go have some fun!
Saturday, August 28, 2010
The Kid Is All Right
Well, it's been another month, and what a month it's been. Where do I start? I'll start with an update on the MS. The most exciting news is that I have a new brace. It's made out of carbon fibre, is very light and goes on my right leg, which is the weaker leg and the one where I have trouble lifting my foot. The bottom part slips into the shoe and you velcro the top just under the knee. You can read a description of it here: http://www.kineticr.com/noodle.html. It helps me to lift my foot, to feel more stable and to walk or stand for a longer period of time. Carla even commented that I walk just like a normal person when I have it on. Hmmm. Do I want to be a normal person? Haven't I been trying all my life not to be like everyone else? Oh well. In any case, I love it. I'm still going to physical therapy once a week at Stanford Medical Center, I'm still taking the oral drug Ampyra which is helps with my energy level and a little bit with the walking, I'm still attending the monthly lectures at Stanford, and I'm still trying to decide whether to take the injectable drug. The lecture this week was by a yoga teacher from NY (who drinks cawfee) who was diagnosed with MS 10 years ago and was in a wheelchair until she started yoga classes. She's bouncy and energetic and jumping all over the place. Although she gives MS all the credit for her recovery, she is also on the drug Copaxone (which is the one I would take if and when I decide to do that) and intends to remain on it. Next month will be Art Therapy. It's a wonderful program which I'm really enjoying. I still use the cane, but only when it's necessary and I'm tired. I don't want to become too dependent on it. And I've found there's a yoga class at the YMCA on Mondays at 5:30 so I'm planning on trying it out this Monday after work.
My support group has periodic potlucks, and this month's took place up in the hills among these majestic redwood trees. Our hostess, a poet, lives in a cottage surrounded and embraced by these wonderful trees and we all spent a magical afternoon there. Just about everyone in this group has some kind of artistic talent (myself unfortunately NOT included) and we were treated to poetry readings, bagpipe playing, guitar playing and song, and a performance by a trained Shakespearean actor, all while we were basking in the sun and splendor of our surroundings. I was still on a high from it the next day. I feel so lucky to know and be accepted by these people.
My group of friends from high school who have found and "friended" me on Facebook is growing by leaps and bounds. Some of them have become close friends and daily email correspondents in a very short period of time. I've learned something from this. When I would first receive the "friend" request, I would look them up in the yearbook. If I didn't recognize them, or felt we wouldn't have anything in common, I would ignore the request. My original Facebook high school friend, Lyn, encouraged me to not be so closed minded and she was right. None of us is who we were then - in fact, most of us weren't anyone at all, we were like fetuses, still developing. I'm delighting in the new friends I'm making online, especially since we all have this wicked New York sense of humor. I don't have to explain to anyone that I was just kidding!
I had a bad dream last night about Deja. I guess I still haven't completely let go of wanting her in my life and mourning the loss of her. I still don't get it. Kimberly and her husband had their annual "Thanksgiving in February...er August "(it's usually in February but they've been renovating their house, so they had it in August and it served as a housewarming as well). I went and had a wonderful time, but I kept wondering whether Arlene and Wayne would be there. They weren't, and I don't know whether that was because of me or not. It's been almost two years now since I've talked to or seen them. Doesn't everyone find that strange? I just don't know how people can go from being supportive, loving and close, to.....nothing, nada, zilch....overnight. I will never understand that. I guess the phrase out of sight out of mind was coined for a reason.
In case anyone might worry that I'm sad, don't, because I'm not. I have a wonderful life, and I'm grateful for it every minute of the day.
I kind of had a job offer the other day. It came through Liza, just like the one I have now did. She knows an appraiser here in Redwood City who is looking for an office manager. It turns out I used to use this appraiser! Redwood City really is a small world. I talked to her, but the timing isn't right. We've just started our annual audit at work and I couldn't possibly leave before the end of the year. In addition, I do not see myself working full-time 5 days a week. How would I get anything done, go to all these doctor appointments, work out at the gym, meet people for lunch, drink my lattes and read the paper, go play with Carla or Liza or Trish or Donna or Judy? How would I do that? However, it did make me realize how much I deeply want to and need to work locally. It motivated me to polish up my resume, finish my training of Quickbooks, and start to get the word out.
In the meantime, I've discovered a solution for the stressful commute. As long as I don't go to work until 10-10:30 AM, the ride isn't that bad. It's the coming home that's so horrendous and has me so frazzled. Well, I was invited to dinner a couple of weeks ago to the home of a friend who lives in Palo Alto - that's a little more than two thirds of the way home from work. She lives right off of El Camino Real, a wide street that runs up and down the Peninsula, including very close to my house, and I can get to El Camino Real fairly quickly from work on a little freeway called 237. It's not as hectic as Fwy 101 and I don't have to cross over as many lanes when I'm in the commuter lane. Plus I'd read recently that they'd synchronized the lights on it. And sure enough, they have. By taking that road instead of Fwy 101, it takes me about 15 minutes longer, but I arrive home relaxed and peaceful, instead of frazzled and ready to drop. This is a huge improvement and has probably added 10 years to my life!
The High Holy Days are almost upon us. This will be very interesting - I don't think I've ever attended these services in my life. What I do for the love of music. Actually, I've been enjoying attending the classes and I like the people.
Well, as Bugs Bunny used to say, That's All Folks!
My support group has periodic potlucks, and this month's took place up in the hills among these majestic redwood trees. Our hostess, a poet, lives in a cottage surrounded and embraced by these wonderful trees and we all spent a magical afternoon there. Just about everyone in this group has some kind of artistic talent (myself unfortunately NOT included) and we were treated to poetry readings, bagpipe playing, guitar playing and song, and a performance by a trained Shakespearean actor, all while we were basking in the sun and splendor of our surroundings. I was still on a high from it the next day. I feel so lucky to know and be accepted by these people.
My group of friends from high school who have found and "friended" me on Facebook is growing by leaps and bounds. Some of them have become close friends and daily email correspondents in a very short period of time. I've learned something from this. When I would first receive the "friend" request, I would look them up in the yearbook. If I didn't recognize them, or felt we wouldn't have anything in common, I would ignore the request. My original Facebook high school friend, Lyn, encouraged me to not be so closed minded and she was right. None of us is who we were then - in fact, most of us weren't anyone at all, we were like fetuses, still developing. I'm delighting in the new friends I'm making online, especially since we all have this wicked New York sense of humor. I don't have to explain to anyone that I was just kidding!
I had a bad dream last night about Deja. I guess I still haven't completely let go of wanting her in my life and mourning the loss of her. I still don't get it. Kimberly and her husband had their annual "Thanksgiving in February...er August "(it's usually in February but they've been renovating their house, so they had it in August and it served as a housewarming as well). I went and had a wonderful time, but I kept wondering whether Arlene and Wayne would be there. They weren't, and I don't know whether that was because of me or not. It's been almost two years now since I've talked to or seen them. Doesn't everyone find that strange? I just don't know how people can go from being supportive, loving and close, to.....nothing, nada, zilch....overnight. I will never understand that. I guess the phrase out of sight out of mind was coined for a reason.
In case anyone might worry that I'm sad, don't, because I'm not. I have a wonderful life, and I'm grateful for it every minute of the day.
I kind of had a job offer the other day. It came through Liza, just like the one I have now did. She knows an appraiser here in Redwood City who is looking for an office manager. It turns out I used to use this appraiser! Redwood City really is a small world. I talked to her, but the timing isn't right. We've just started our annual audit at work and I couldn't possibly leave before the end of the year. In addition, I do not see myself working full-time 5 days a week. How would I get anything done, go to all these doctor appointments, work out at the gym, meet people for lunch, drink my lattes and read the paper, go play with Carla or Liza or Trish or Donna or Judy? How would I do that? However, it did make me realize how much I deeply want to and need to work locally. It motivated me to polish up my resume, finish my training of Quickbooks, and start to get the word out.
In the meantime, I've discovered a solution for the stressful commute. As long as I don't go to work until 10-10:30 AM, the ride isn't that bad. It's the coming home that's so horrendous and has me so frazzled. Well, I was invited to dinner a couple of weeks ago to the home of a friend who lives in Palo Alto - that's a little more than two thirds of the way home from work. She lives right off of El Camino Real, a wide street that runs up and down the Peninsula, including very close to my house, and I can get to El Camino Real fairly quickly from work on a little freeway called 237. It's not as hectic as Fwy 101 and I don't have to cross over as many lanes when I'm in the commuter lane. Plus I'd read recently that they'd synchronized the lights on it. And sure enough, they have. By taking that road instead of Fwy 101, it takes me about 15 minutes longer, but I arrive home relaxed and peaceful, instead of frazzled and ready to drop. This is a huge improvement and has probably added 10 years to my life!
The High Holy Days are almost upon us. This will be very interesting - I don't think I've ever attended these services in my life. What I do for the love of music. Actually, I've been enjoying attending the classes and I like the people.
Well, as Bugs Bunny used to say, That's All Folks!
Sunday, July 18, 2010
Settling Into My New Life
I called this blog A New Life when I started it about two years ago, but it's only now that I feel that I am actually living this new life. So much of the first year was taken up by crossing things off my "to do" list: getting out of the house, finding a place to live, filing for divorce, filing my tax returns, finding a job, figuring out my health insurance, adapting to living alone, letting go, figuring out who I was, reclaiming my soul.
But now I'm in a different space. I've been in the carriage house almost two years. I've been at my current job over a year. I'm now on Medicare and have all new doctors. I have a new tax preparer and have even filed on time for the first time ever (April 15th). My dance card is most often full, mainly with new friends I've made in the last year or so. I feel comfortable in my skin ("bien dans ma peau" as they say in French). I sleep well at night. I feel confident in my future, even though I don't know what my future holds. To celebrate this new contentment, I had my nails done this morning, for the first time in over 4 years. I am once again caring about how I look. This is a good thing.
I haven't posted on this blog for over a month. I have to confess that I didn't feel up to it. I went through a couple of weeks of feeling a bit "down." I struggled with whether to post anyway, in an attempt to be honest and genuine here, not just posting on the "good" days. But the "down" part of me won out and I didn't have the energy or desire. Why was I down? I honestly don't know. Part of it was due to the fact that the new MS drug Ampyra suddenly stopped working for me the way it had been. I still felt an increase in energy, but not only did the improvement in my walking cease, but I experienced a relapse - I started feeling a numbness in my lower legs which made it very difficult to walk, or to stand for more than 5 minutes. I didn't know whether my new shipment of pills was defective, or whether I was experiencing a relapse, or if it was perhaps due to the increase in temperature. I still don't know. But it was upsetting to me. The numbness started to go away a few days ago, but my legs still aren't as strong as they were in the early days of taking the drug and I find myself using the cane practically all the time. Not good.
However, I'm not letting it get to me anymore, and I'm concentrating on all the good things that are happening in my life, of which there are many.
I started group physical therapy at Stanford Hospital on June 10th and I am loving it. Tashina is also the physical therapist and there are usually 2-4 of us in the class. Carla has already noticed an improvement in my posture. We do exercises to improve our balance, our core muscles, our strength, and the ability to lift our feet. The most exciting part is that I've made a new friend. Her name is Donna, she is about my age, is at about the same level with her MS, and we immediately clicked. We now go out for lunch every Thursday after "rehab" and even spent one day after rehab playing in SF. She's as nuts about Argentina as I am about Brazil and we share a love for Latin music. She and her husband are ardent tango dancers and she and I are trying to put together a class with Tango dancing as physical therapy. It already exists across the country for Parkinson's, so why not for MS? She introduced me to a friend of hers who is also our age and has MS and we've become friends, too. Her name is Judy, is Jewish from NY, and she's coming with me this Monday evening to the free jazz concert in Redwood City.
Stanford Medical School has just started having monthly lectures/meetings on MS. Donna and I went to the first one this past Wednesday where the guest speaker was a naturopathic doctor. I met a woman there, also about my age, and we'll be getting together soon too. I've never had friends before who also have MS and I have to admit, it's very very nice. It does make a difference. It's not a necessity to having a friendship, not by a long shot, but it's nice to have. I realized the other day that I'm very lucky in that I have so many different groups of friends: 1) my friends from before 2) Carla and the friends I've made through her 3) the friends I've made through the cancer class Carla and I took at the YMCA 4) the friends I've made through the support group for chronic illnesses 5) the new friends I've made through MS. I feel very lucky. Back to the monthly MS meetings, future meetings will include art therapy and yoga. Donna and I have suggested they have one on Tango as therapy, with Donna and her husband teaching it, and I would like to see one on singing and breathing techniques. The naturopathic doctor had mentioned deep breathing as being important to good health.
I received a surprise phone call from the Cantor at our local Synagogue here in Redwood City. I had taken that 4 week music class from her and she remembered how much I love music. She's putting together a small group of music lovers to meet on a weekly basis between now and the High Holy Days to practice and learn the music that will be sung then, so that we can serve as "ringers" in the congregation and thus lead everyone in the singing. She asked me if I would be interested in participating and I said yes. Our first meeting is a week from Tuesday. Vickie, my boss at work, has asked me to decide on a regular weekly schedule, instead of on a week-to-week basis, and I've chosen to work Monday, Wednesday and Friday. This leaves me free for rehab on Thursdays and the Temple on Tuesdays. As I said, I'm settling into a rhythm here with my New Life.
Here's a bit of interesting news for those who have known me since high school. Elson and I used to belong to a jazz group called PAJA (Palo Alto Jazz Alliance). I've discontinued the membership but am still on their mailing list, and I received an email announcement last week regarding a free Members party in September, with local jazz pianist David Miller performing. As some of you may recall, he was my boyfriend in high school and into freshman year in college. He lives here locally and even though professionally he's a lawyer, he has a jazz trio and performs for private organizations. I sent him an email asking whether he was THIS David Miller, and he wrote back a pithy response: "yes". I'm planning on attending and have asked my sister to join me. I think it will be fun - a tuneful step back in time. I actually met David through his piano playing - he was the accompanist for our high school glee club. Life can be so interesting. You just have to live long enough!
I've talked to Vickie at work about phasing out towards the end of the year. I really do want to find employment closer to home. I am finding the commute more and more difficult. I had a near accident on the freeway a couple of weeks ago. There had been an accident on Highway 101 and it was bumper to bumper. I was trying to get across so that I would be able to eventually exit. I had just moved across one lane when the person in front of me suddenly came to a halt and I came THIS close to bumping into her. In fact, we both moved all the way to the side (in a way, this was a Godsend, because everyone made room for us to do this - I might not have made it across in time otherwise) to check for damage because we weren't sure whether I had hit her or not. Luckily I hadn't. Then this past Friday there was an accident on Highway 101 right where I would have gotten on, causing backups all the way to where I would have gotten off, so I took a detour to Highway 280. No sooner had I gotten onto 280, traffic came to a standstill there and I found out there was an accident further north just before my exit. So I was damned either way. It took me over an hour to get home. Luckily, when I got home, Carla and a friend were sitting in the garden drinking wine and they called to me to join them. I collapsed into a chair and gratefully lifted my glass.
I bit the bullet and called Elson a couple of weeks ago. I'd decided it was time. It just didn't make sense that we weren't speaking to each other - not after over 30 years of marriage. He was surprised to hear from me, but we ended up having a very good conversation. It lasted almost two hours! I'm glad I did it, thus breaking the ice, and will do it from time to time.
Well, I think that pretty much catches everyone up. I did go to SF for that ACT performance of The Tosca Project and thoroughly enjoyed it. I also took the train into SF on a Wednesday, was picked up at the train station by my roommate from college, Andrea, who took me out for a very nice lunch and then to the De Young museum for the Impressionist exhibit visiting from Paris. I got a wheelchair and we had a great day. I had particularly wanted to see it with her and my other roommate Joanne because we had seen the Impressionists for the first time together in Paris at the Jeu de Paume when we spent the summer there in 1965. I thought it particularly fitting to see it here together. Hopefully Joanne will make it out here and all 3 of us can go together.
I've been very lucky with the weather in that it hasn't been too hot. Carla did a good job of teaching me how to keep it cool here (I open the windows at night and close them in the mornings).
That's all, folks. I hope everyone is having a great summer!
But now I'm in a different space. I've been in the carriage house almost two years. I've been at my current job over a year. I'm now on Medicare and have all new doctors. I have a new tax preparer and have even filed on time for the first time ever (April 15th). My dance card is most often full, mainly with new friends I've made in the last year or so. I feel comfortable in my skin ("bien dans ma peau" as they say in French). I sleep well at night. I feel confident in my future, even though I don't know what my future holds. To celebrate this new contentment, I had my nails done this morning, for the first time in over 4 years. I am once again caring about how I look. This is a good thing.
I haven't posted on this blog for over a month. I have to confess that I didn't feel up to it. I went through a couple of weeks of feeling a bit "down." I struggled with whether to post anyway, in an attempt to be honest and genuine here, not just posting on the "good" days. But the "down" part of me won out and I didn't have the energy or desire. Why was I down? I honestly don't know. Part of it was due to the fact that the new MS drug Ampyra suddenly stopped working for me the way it had been. I still felt an increase in energy, but not only did the improvement in my walking cease, but I experienced a relapse - I started feeling a numbness in my lower legs which made it very difficult to walk, or to stand for more than 5 minutes. I didn't know whether my new shipment of pills was defective, or whether I was experiencing a relapse, or if it was perhaps due to the increase in temperature. I still don't know. But it was upsetting to me. The numbness started to go away a few days ago, but my legs still aren't as strong as they were in the early days of taking the drug and I find myself using the cane practically all the time. Not good.
However, I'm not letting it get to me anymore, and I'm concentrating on all the good things that are happening in my life, of which there are many.
I started group physical therapy at Stanford Hospital on June 10th and I am loving it. Tashina is also the physical therapist and there are usually 2-4 of us in the class. Carla has already noticed an improvement in my posture. We do exercises to improve our balance, our core muscles, our strength, and the ability to lift our feet. The most exciting part is that I've made a new friend. Her name is Donna, she is about my age, is at about the same level with her MS, and we immediately clicked. We now go out for lunch every Thursday after "rehab" and even spent one day after rehab playing in SF. She's as nuts about Argentina as I am about Brazil and we share a love for Latin music. She and her husband are ardent tango dancers and she and I are trying to put together a class with Tango dancing as physical therapy. It already exists across the country for Parkinson's, so why not for MS? She introduced me to a friend of hers who is also our age and has MS and we've become friends, too. Her name is Judy, is Jewish from NY, and she's coming with me this Monday evening to the free jazz concert in Redwood City.
Stanford Medical School has just started having monthly lectures/meetings on MS. Donna and I went to the first one this past Wednesday where the guest speaker was a naturopathic doctor. I met a woman there, also about my age, and we'll be getting together soon too. I've never had friends before who also have MS and I have to admit, it's very very nice. It does make a difference. It's not a necessity to having a friendship, not by a long shot, but it's nice to have. I realized the other day that I'm very lucky in that I have so many different groups of friends: 1) my friends from before 2) Carla and the friends I've made through her 3) the friends I've made through the cancer class Carla and I took at the YMCA 4) the friends I've made through the support group for chronic illnesses 5) the new friends I've made through MS. I feel very lucky. Back to the monthly MS meetings, future meetings will include art therapy and yoga. Donna and I have suggested they have one on Tango as therapy, with Donna and her husband teaching it, and I would like to see one on singing and breathing techniques. The naturopathic doctor had mentioned deep breathing as being important to good health.
I received a surprise phone call from the Cantor at our local Synagogue here in Redwood City. I had taken that 4 week music class from her and she remembered how much I love music. She's putting together a small group of music lovers to meet on a weekly basis between now and the High Holy Days to practice and learn the music that will be sung then, so that we can serve as "ringers" in the congregation and thus lead everyone in the singing. She asked me if I would be interested in participating and I said yes. Our first meeting is a week from Tuesday. Vickie, my boss at work, has asked me to decide on a regular weekly schedule, instead of on a week-to-week basis, and I've chosen to work Monday, Wednesday and Friday. This leaves me free for rehab on Thursdays and the Temple on Tuesdays. As I said, I'm settling into a rhythm here with my New Life.
Here's a bit of interesting news for those who have known me since high school. Elson and I used to belong to a jazz group called PAJA (Palo Alto Jazz Alliance). I've discontinued the membership but am still on their mailing list, and I received an email announcement last week regarding a free Members party in September, with local jazz pianist David Miller performing. As some of you may recall, he was my boyfriend in high school and into freshman year in college. He lives here locally and even though professionally he's a lawyer, he has a jazz trio and performs for private organizations. I sent him an email asking whether he was THIS David Miller, and he wrote back a pithy response: "yes". I'm planning on attending and have asked my sister to join me. I think it will be fun - a tuneful step back in time. I actually met David through his piano playing - he was the accompanist for our high school glee club. Life can be so interesting. You just have to live long enough!
I've talked to Vickie at work about phasing out towards the end of the year. I really do want to find employment closer to home. I am finding the commute more and more difficult. I had a near accident on the freeway a couple of weeks ago. There had been an accident on Highway 101 and it was bumper to bumper. I was trying to get across so that I would be able to eventually exit. I had just moved across one lane when the person in front of me suddenly came to a halt and I came THIS close to bumping into her. In fact, we both moved all the way to the side (in a way, this was a Godsend, because everyone made room for us to do this - I might not have made it across in time otherwise) to check for damage because we weren't sure whether I had hit her or not. Luckily I hadn't. Then this past Friday there was an accident on Highway 101 right where I would have gotten on, causing backups all the way to where I would have gotten off, so I took a detour to Highway 280. No sooner had I gotten onto 280, traffic came to a standstill there and I found out there was an accident further north just before my exit. So I was damned either way. It took me over an hour to get home. Luckily, when I got home, Carla and a friend were sitting in the garden drinking wine and they called to me to join them. I collapsed into a chair and gratefully lifted my glass.
I bit the bullet and called Elson a couple of weeks ago. I'd decided it was time. It just didn't make sense that we weren't speaking to each other - not after over 30 years of marriage. He was surprised to hear from me, but we ended up having a very good conversation. It lasted almost two hours! I'm glad I did it, thus breaking the ice, and will do it from time to time.
Well, I think that pretty much catches everyone up. I did go to SF for that ACT performance of The Tosca Project and thoroughly enjoyed it. I also took the train into SF on a Wednesday, was picked up at the train station by my roommate from college, Andrea, who took me out for a very nice lunch and then to the De Young museum for the Impressionist exhibit visiting from Paris. I got a wheelchair and we had a great day. I had particularly wanted to see it with her and my other roommate Joanne because we had seen the Impressionists for the first time together in Paris at the Jeu de Paume when we spent the summer there in 1965. I thought it particularly fitting to see it here together. Hopefully Joanne will make it out here and all 3 of us can go together.
I've been very lucky with the weather in that it hasn't been too hot. Carla did a good job of teaching me how to keep it cool here (I open the windows at night and close them in the mornings).
That's all, folks. I hope everyone is having a great summer!
Monday, May 31, 2010
Always Within Never
I've just finished reading the most amazing book - The Elegance of The Hedgehog by the French novelist and philosopher Muriel Barbery. It took me a long time to get into it, but once I did, I was spellbound, and the final paragraph has become my new mantra:
I have finally concluded, maybe that's what life is about: there's a lot of despair, but also the odd moment of beauty, where time is no longer the same. It's as if those strains of music created a sort of interlude in time, something suspended, an elsewhere that had come to us, an always within never..... moments of always within never. Beauty, in this world.
This paragraph sums up my life the last few years, what helped me to get through it, survive, maintain my sense of humor and joie de vivre. I called it the happiness gene, but there's more to it than that. I've often said it was because of music, but I wasn't able to put it into words or explain it. This paragraph finally enables me to. I have always been able to find the moments of "always within never" - even in my darkest moments. A couple of weeks ago, as I was driving to work my mind began to revisit some of those dark moments and I found myself once again on the verge of tears and starting to have that feeling represented by Edvard Munch's The Scream, when all of a sudden the music playing pierced the veil and I suddenly was singing along and smiling and feeling joy. Tout d'un coup, as they say. I thank God for these moments of beauty, not just for their existence, but for my always being able to see and feel them.
Along that vein, I have two additional mantras. One was in the SF Chronicle section and the other was a New Yorker cartoon that Carla gave me:
1) I say when life hands you a lemon, make lemonade....when life hands you a juniper berry, make a gin martini.
2) Wife to husband: If they gave us lemons, you'd make lemonade, but I'd make limoncello.
Both, words to live by!
On to other news. I'm back on the new MS drug, Ampyra, but so far I am not having the success I originally had with it. The first time I tried it, I felt an immediate increase in energy and ability to walk. Then I had that debacle with the double dosage, and I stopped taking it for 4 days. I started again this past Saturday, and I'm still feeling "off". I was dizzy on Saturday, and the dizziness has mostly gone away, but I just don't feel right. I'm low on energy, my legs are heavy and slow, and I'm shuffling around. I will stick with it though. However, this is not making me very positive about trying one of the interferon drugs like Dr. Dunn wants me to. I do not enjoy not feeling well.
I had my first appointment with Physical Therapy at Stanford on Thursday. I am very excited about this. I'd been reading in my various MS magazines about physical therapy and exercises specific for MS, but Kaiser either did not offer them or my doctor did not feel compelled to tell me about them. I'd asked Dr. Dunn about them during my first visit and he sent a referral to the rehab clinic. I spent almost an hour with a personal trainer, Tashina Fuelling, who showed me about 10 exercises that I can do on my own at home. I'm going to meet with her once a week for a month. In addition, she leads a group exercise class once a week from 10:30 AM to noon composed exclusively of MS patients ranging in age from early 30s to my age, a large amount of whom are taking this same drug Ampyra, and I have signed up for that as well. I can't go this Thursday because I have to work, but I'll start on June 10th. All of this is covered by Medicare. Hooray for Medicare, may the force be with you! She also told me about a yoga class exclusively for MS patients that is taught right here in Redwood City. That probably wouldn't be covered by Medicare, but it's not expensive and I will definitely check it out, but not right away, not while I'm still working in Milpitas. There are not enough hours in the day. I'm already finding out that I don't have enough time to attend the support group I'd started on Wednesdays. It's too bad I have to work!
I've decided to not renew my subscription to TheatreWorks. I enjoy their productions very much, but I've missed two of the 8 plays this last season because I was too tired to go directly from work. I can usually get half price tickets online, so I've decided to just go that route for the new season, just seeing the ones I really want to see, on days when I'm not too tired. On the other hand, I've decided to get half price tickets on my own for some productions in SF. I hated missing the A.C.T. productions of Brief Encounter and 39 Steps, so I bit the bullet and got a ticket for next Saturday's preview of the world premiere of The Tosca Project at A.C.T. It's a matinee so I plan to either drive or take the train and BART. It's a purely San Francisco play based on the bar/cafeTosca in North Beach with original choreography by our San Francisco Ballet's own Val Caniparoli. Here's what the internet has to say about it: "the uniquely San Francisco movement and theater event four years in the making. Created and staged by Carey Perloff and San Francisco Ballet choreographer Val Caniparoli, The Tosca Project brings together world-renowned dancers from San Francisco Ballet, including prima ballerina Sabina Allemann and Pascal Molat, with such acclaimed actors as The Overcoat’s Peter Anderson. 'The Tosca Project is a celebration of North Beach’s legendary Tosca Café as a metaphor for all those magical bars around the world in which the ghosts of a million encounters remain present in the air,' says Perloff. 'This beautiful, emotionally vivid, and magical piece is a unique collaboration between some of the best Bay Area artists and the city we love, offered as a valentine to our extraordinary audience.'
I'm really looking forward to it. The last bit of news concerns the divorce - it is final as of May 24th, just two months past schedule. It seems the document reviewer had lost the paperwork (I finally called asking about it a couple of weeks ago) but he eventually found it and processed it while I was on the phone with him. I received the paperwork in the mail a few days later. To be honest, I have mixed feelings. It wasn't all bad; in fact, there were a lot of really good moments and times. We had an extraordinary amount of things in common, things we both liked to do, and I miss having a playmate. I miss having someone to share the little moments with. I miss having a family. I'm a little concerned about my future and what it holds for me, given my current state of health. How long will I able to keep working? How will I survive if I can't work? These are the kinds of thoughts that wake me up in the middle of the night.
But mostly I listen to my music, read my books, enjoy lying on my chaise lounge on my balcony looking out over Carla's beautiful garden and her majestic redwood tree, enjoy my dinners across the street at Liza's, and basically take it a day at a time. And always, always, I look for the always within never.
I have finally concluded, maybe that's what life is about: there's a lot of despair, but also the odd moment of beauty, where time is no longer the same. It's as if those strains of music created a sort of interlude in time, something suspended, an elsewhere that had come to us, an always within never..... moments of always within never. Beauty, in this world.
This paragraph sums up my life the last few years, what helped me to get through it, survive, maintain my sense of humor and joie de vivre. I called it the happiness gene, but there's more to it than that. I've often said it was because of music, but I wasn't able to put it into words or explain it. This paragraph finally enables me to. I have always been able to find the moments of "always within never" - even in my darkest moments. A couple of weeks ago, as I was driving to work my mind began to revisit some of those dark moments and I found myself once again on the verge of tears and starting to have that feeling represented by Edvard Munch's The Scream, when all of a sudden the music playing pierced the veil and I suddenly was singing along and smiling and feeling joy. Tout d'un coup, as they say. I thank God for these moments of beauty, not just for their existence, but for my always being able to see and feel them.
Along that vein, I have two additional mantras. One was in the SF Chronicle section and the other was a New Yorker cartoon that Carla gave me:
1) I say when life hands you a lemon, make lemonade....when life hands you a juniper berry, make a gin martini.
2) Wife to husband: If they gave us lemons, you'd make lemonade, but I'd make limoncello.
Both, words to live by!
On to other news. I'm back on the new MS drug, Ampyra, but so far I am not having the success I originally had with it. The first time I tried it, I felt an immediate increase in energy and ability to walk. Then I had that debacle with the double dosage, and I stopped taking it for 4 days. I started again this past Saturday, and I'm still feeling "off". I was dizzy on Saturday, and the dizziness has mostly gone away, but I just don't feel right. I'm low on energy, my legs are heavy and slow, and I'm shuffling around. I will stick with it though. However, this is not making me very positive about trying one of the interferon drugs like Dr. Dunn wants me to. I do not enjoy not feeling well.
I had my first appointment with Physical Therapy at Stanford on Thursday. I am very excited about this. I'd been reading in my various MS magazines about physical therapy and exercises specific for MS, but Kaiser either did not offer them or my doctor did not feel compelled to tell me about them. I'd asked Dr. Dunn about them during my first visit and he sent a referral to the rehab clinic. I spent almost an hour with a personal trainer, Tashina Fuelling, who showed me about 10 exercises that I can do on my own at home. I'm going to meet with her once a week for a month. In addition, she leads a group exercise class once a week from 10:30 AM to noon composed exclusively of MS patients ranging in age from early 30s to my age, a large amount of whom are taking this same drug Ampyra, and I have signed up for that as well. I can't go this Thursday because I have to work, but I'll start on June 10th. All of this is covered by Medicare. Hooray for Medicare, may the force be with you! She also told me about a yoga class exclusively for MS patients that is taught right here in Redwood City. That probably wouldn't be covered by Medicare, but it's not expensive and I will definitely check it out, but not right away, not while I'm still working in Milpitas. There are not enough hours in the day. I'm already finding out that I don't have enough time to attend the support group I'd started on Wednesdays. It's too bad I have to work!
I've decided to not renew my subscription to TheatreWorks. I enjoy their productions very much, but I've missed two of the 8 plays this last season because I was too tired to go directly from work. I can usually get half price tickets online, so I've decided to just go that route for the new season, just seeing the ones I really want to see, on days when I'm not too tired. On the other hand, I've decided to get half price tickets on my own for some productions in SF. I hated missing the A.C.T. productions of Brief Encounter and 39 Steps, so I bit the bullet and got a ticket for next Saturday's preview of the world premiere of The Tosca Project at A.C.T. It's a matinee so I plan to either drive or take the train and BART. It's a purely San Francisco play based on the bar/cafeTosca in North Beach with original choreography by our San Francisco Ballet's own Val Caniparoli. Here's what the internet has to say about it: "the uniquely San Francisco movement and theater event four years in the making. Created and staged by Carey Perloff and San Francisco Ballet choreographer Val Caniparoli, The Tosca Project brings together world-renowned dancers from San Francisco Ballet, including prima ballerina Sabina Allemann and Pascal Molat, with such acclaimed actors as The Overcoat’s Peter Anderson. 'The Tosca Project is a celebration of North Beach’s legendary Tosca Café as a metaphor for all those magical bars around the world in which the ghosts of a million encounters remain present in the air,' says Perloff. 'This beautiful, emotionally vivid, and magical piece is a unique collaboration between some of the best Bay Area artists and the city we love, offered as a valentine to our extraordinary audience.'
I'm really looking forward to it. The last bit of news concerns the divorce - it is final as of May 24th, just two months past schedule. It seems the document reviewer had lost the paperwork (I finally called asking about it a couple of weeks ago) but he eventually found it and processed it while I was on the phone with him. I received the paperwork in the mail a few days later. To be honest, I have mixed feelings. It wasn't all bad; in fact, there were a lot of really good moments and times. We had an extraordinary amount of things in common, things we both liked to do, and I miss having a playmate. I miss having someone to share the little moments with. I miss having a family. I'm a little concerned about my future and what it holds for me, given my current state of health. How long will I able to keep working? How will I survive if I can't work? These are the kinds of thoughts that wake me up in the middle of the night.
But mostly I listen to my music, read my books, enjoy lying on my chaise lounge on my balcony looking out over Carla's beautiful garden and her majestic redwood tree, enjoy my dinners across the street at Liza's, and basically take it a day at a time. And always, always, I look for the always within never.
Wednesday, May 19, 2010
Medical Update plus this 'n that
Well, it's been quite a month. I've been up and down and sideways (kind of like an episode of LOST - any fellow LOSTIES out there?). Where shall I start? Well, I got the results of the two MRIs. I had a follow up appointment with Dr. Dunn on 5/11/10 when he and his assistant Jong-mi Lee went over the results in detail, showing me the actual pictures and giving me a copy of the written report. If anyone wants me to email them a copy of the report, just let me know since I've scanned them onto my computer. The brain MRI didn't have any surprises, but the one on the spine did. It showed something they referred to as an "enhancement" or "inflammation." It looked like a grey blob (sort of like The Smoke Monster, again for you fellow LOSTIES), as opposed to the normal lesions found on MRIs for people with MS, which are stark white blobs. The doctor was concerned about this. He said that I now fell into a hybrid classification, part Secondary Progressive, part Relapsing Remitting, since this enhancement was considered to be a relapse. That means that I now qualify for the interferon drugs, which only help with Relapsing Remitting MS, and which I had successfully avoided for 15 years. I do not like these drugs. First of all, they are injectables, which means you have to give yourself a shot, either daily or weekly. Second of all, they come with a whole passel of side effects (I used passel instead of shitload which is what I really wanted to use). You can look them up under their names - Avonex, Copaxone, Betaferon. There are also some oral drugs coming out in the next few months, but they carry possible side effects of several kinds of cancer and they didn't think that was a good idea, given my history with cancer. The reason they want me to take one of these drugs is because if I were to get a second instance of enhancement, it could seriously impact my mobility. This current enhancement is probably why I've been having the problems walking that I've had the last year. Of course, there's no way of knowing how long it has been there since wonderful Kaiser hasn't let me have an MRI SINCE 1998!!! Ok, no more venting.
So, that's the worst of it. They gave me an armful of articles, books, and DVDs to study on these drugs so I can make a decision of which if any I would take. I've pushed it to the side of the table for now, just not wanting to deal with it for the moment.
I did keep my appointment regarding the Walk Aide, but it's not appropriate for me right now. Which is a good thing, since it costs $5,000 and is not covered by Medicare, thank you very much. It's only covered for partial spinal cord injuries. Go figure. I'm thinking it might be covered by insurance by the time it would be appropriate for me. So I've crossed that off the list for now.
I am taking the new oral drug that just got approved by the FDA in January, however. At first the company (Ampyra) told me it would cost me $366 a month because of the infamous doughnut hole in drug coverage, and I was going to pass on it. But then I got a call from Ampyra's Patient Assistance department. They sent me a 2-page application telling me to fax it back along with the first page of my tax return. Luckily, I had filed on April 15th for the first time ever and so didn't have to use that pesky 2008 return with the sale of the stock, and my application was processed and approved the very next day and I'm now getting the drug FOR FREE. Hallelujah, some good news at last. They shipped a month's supply right away and I received it within two days. I started taking the pill on Saturday, May 1st. For the first three days I experienced some slight dizziness and a very slight headache, but that's all. Other possible side effects include constipation, insomnia, back ache and possible seizures, but I didn't get any of those (I wouldn't know about the constipation anyway since I've been dealing with that since college and I take enough stuff for it that it wouldn't be a problem). I noticed immediate benefits - I had more energy, got more done in a day, and was able to walk better.
Then I had a little "contretemps" (that's my new favorite word of the moment). When I saw Dr. Dunn on 5/11, both he and Jong-mi encouraged me to take a second pill without waiting for 12 hours to elapse on days when I had plans in the evening and might need more energy. The directions with the drug made it very clear that this was a time-release drug and that under no circumstances should you take more than one pill in a 12 hour period or two pills within 24 hours. I had decided to take only one pill a day since by the time I would be taking the second pill it would be close to bedtime, so why bother, and why risk experiencing insomnia. HOWEVER, I was a little bummed after hearing the results of the MRI so I decided to go shopping at Ross on the way home, and so I was exhausted by the time I got home, and Dick was coming by that evening. So I decided to take a second pill, even though it had only been around 5 hours or so since I'd taken the first one.
NOT A GOOD IDEA.
I had an immediate reaction, becoming very dizzy and experiencing flu-like symptoms. Luckily, Dick did not stay very long, and I ended up going to bed early without even having dinner. Now, I take another drug called Levothroid for my thyroid. I normally take it in the middle of the night when I get up to go to the bathroom, since you're supposed to take it on an empty stomach and an hour before you eat anything. The next morning I woke up still very dizzy and not feeling well. This was puzzling to me, since each pill should have stayed in my system for only 12 hours, and it was more than 12 hours since I'd taken the second pill. I was so dizzy that I was afraid to drive to work. Well, it was about an hour later that it suddenly hit me that not only had I doubledosed on the new MS drug, I had also doubledosed on the Levothroid. I'd taken it before going to bed since I obviously had an empty stomach and wasn't planning on eating anything until the next day and I might end up sleeping through the night since I didn't feel well. The only problem with this is that I didn't sleep through the night, I got up around 3 AM to go to the bathroom and totally forgot I'd already taken the pill and so took it again. My my. It took a couple of days for all these drugs to thoroughly leave my system and the dizziness did not go away until Thursday or Friday. I'm back on the Ampyra but it doesn't seem to be working as well for me now. I'm going to stick with it though.
Now for some non medical news. I've had some happy things happen. My wonderful friends Ulla and Joachim Halbach, whom I know from the year I lived in Munich and with whom I've stayed in touch all these years, came to the Bay Area. They moved to Vancouver, Canada from Munich not long after I moved to California. I've visited them several times in Vancouver and they'd visited me several times in San Francisco, but I hadn't seen them for around 15 years. We had a wonderful visit. They spent the day with me on Sunday, May 2, stayed overnight in Redwood City, then they left for the Carmel/Monterey area, and then spent Saturday, May 8th with me before flying back home. We picked right up where we'd left off and it was as if we were still in Munich. We shared lots of wonderful memories - trips we'd taken together, parties, meals, friends. It was a real boost.
Another happy surprise was suddenly hearing from a high school friend who'd found me on Facebook. We had not been in touch since high school (1963), yet you'd think we'd been friends all these years too. Her name is Lyn Lederman, she lives in Los Angeles, and we've been emailing each other multiple times a day for the last few weeks, sharing music and YouTube videos, etc. She even sent me a care package of Tom Lehrer CDs, which I can't wait to start listening to. If any of you are not familiar with Tom Lehrer (and shame on your parents if you are not, you've obviously had a deprived childhood), you must go immediately to YouTube and start listening to him. Trust me, you will not regret it. Just picture this delightful ditty "poisoning pigeons in the park" plus the "Vatican Rag" and you'll get the idea.
Another happy occurence involves Social Security. You might recall that Social Security had decided to deduct an addtional premium of $176 a month based on the huge amount of income on my tax return for 2008 (the sale of the stock). Well, I wrote them a letter asking that they reconsider, enclosing a copy of my tax return for 2009 and of the divorce papers I'd filed, and I just heard back a few days ago that someone new had reviewed my case and decided in my favor and they not only will not be deducting that anymore, they reimbursed me for the three months they'd been deducting it. Thank you, God.
Well, this has turned into a very long post. Some of you might have fallen asleep by now. By the way, the beautiful rose in the photo is one Carla has given me from her garden. My apartment is filled with beautiful flower arrangements that she's given me in the last few weeks. She and I are getting ready for the arrival of two delightful British ladies (or as we've been saying, The British are coming, the British are coming). They are mother and daughter and they spent a day with us last Spring when they were visiting San Francisco. Carla met them when she went to England for that wedding last year. Well, we all had such a good time that this time they're staying for 5 nights in Redwood City no less, (at the wonderful Sofitel Hotel - I sent them a full report after staying there with Trish). We're making dinner for them tomorrow night after they arrive and I'm taking Friday and Monday off so we can play with them.
I think that's enough news for now.
So, that's the worst of it. They gave me an armful of articles, books, and DVDs to study on these drugs so I can make a decision of which if any I would take. I've pushed it to the side of the table for now, just not wanting to deal with it for the moment.
I did keep my appointment regarding the Walk Aide, but it's not appropriate for me right now. Which is a good thing, since it costs $5,000 and is not covered by Medicare, thank you very much. It's only covered for partial spinal cord injuries. Go figure. I'm thinking it might be covered by insurance by the time it would be appropriate for me. So I've crossed that off the list for now.
I am taking the new oral drug that just got approved by the FDA in January, however. At first the company (Ampyra) told me it would cost me $366 a month because of the infamous doughnut hole in drug coverage, and I was going to pass on it. But then I got a call from Ampyra's Patient Assistance department. They sent me a 2-page application telling me to fax it back along with the first page of my tax return. Luckily, I had filed on April 15th for the first time ever and so didn't have to use that pesky 2008 return with the sale of the stock, and my application was processed and approved the very next day and I'm now getting the drug FOR FREE. Hallelujah, some good news at last. They shipped a month's supply right away and I received it within two days. I started taking the pill on Saturday, May 1st. For the first three days I experienced some slight dizziness and a very slight headache, but that's all. Other possible side effects include constipation, insomnia, back ache and possible seizures, but I didn't get any of those (I wouldn't know about the constipation anyway since I've been dealing with that since college and I take enough stuff for it that it wouldn't be a problem). I noticed immediate benefits - I had more energy, got more done in a day, and was able to walk better.
Then I had a little "contretemps" (that's my new favorite word of the moment). When I saw Dr. Dunn on 5/11, both he and Jong-mi encouraged me to take a second pill without waiting for 12 hours to elapse on days when I had plans in the evening and might need more energy. The directions with the drug made it very clear that this was a time-release drug and that under no circumstances should you take more than one pill in a 12 hour period or two pills within 24 hours. I had decided to take only one pill a day since by the time I would be taking the second pill it would be close to bedtime, so why bother, and why risk experiencing insomnia. HOWEVER, I was a little bummed after hearing the results of the MRI so I decided to go shopping at Ross on the way home, and so I was exhausted by the time I got home, and Dick was coming by that evening. So I decided to take a second pill, even though it had only been around 5 hours or so since I'd taken the first one.
NOT A GOOD IDEA.
I had an immediate reaction, becoming very dizzy and experiencing flu-like symptoms. Luckily, Dick did not stay very long, and I ended up going to bed early without even having dinner. Now, I take another drug called Levothroid for my thyroid. I normally take it in the middle of the night when I get up to go to the bathroom, since you're supposed to take it on an empty stomach and an hour before you eat anything. The next morning I woke up still very dizzy and not feeling well. This was puzzling to me, since each pill should have stayed in my system for only 12 hours, and it was more than 12 hours since I'd taken the second pill. I was so dizzy that I was afraid to drive to work. Well, it was about an hour later that it suddenly hit me that not only had I doubledosed on the new MS drug, I had also doubledosed on the Levothroid. I'd taken it before going to bed since I obviously had an empty stomach and wasn't planning on eating anything until the next day and I might end up sleeping through the night since I didn't feel well. The only problem with this is that I didn't sleep through the night, I got up around 3 AM to go to the bathroom and totally forgot I'd already taken the pill and so took it again. My my. It took a couple of days for all these drugs to thoroughly leave my system and the dizziness did not go away until Thursday or Friday. I'm back on the Ampyra but it doesn't seem to be working as well for me now. I'm going to stick with it though.
Now for some non medical news. I've had some happy things happen. My wonderful friends Ulla and Joachim Halbach, whom I know from the year I lived in Munich and with whom I've stayed in touch all these years, came to the Bay Area. They moved to Vancouver, Canada from Munich not long after I moved to California. I've visited them several times in Vancouver and they'd visited me several times in San Francisco, but I hadn't seen them for around 15 years. We had a wonderful visit. They spent the day with me on Sunday, May 2, stayed overnight in Redwood City, then they left for the Carmel/Monterey area, and then spent Saturday, May 8th with me before flying back home. We picked right up where we'd left off and it was as if we were still in Munich. We shared lots of wonderful memories - trips we'd taken together, parties, meals, friends. It was a real boost.
Another happy surprise was suddenly hearing from a high school friend who'd found me on Facebook. We had not been in touch since high school (1963), yet you'd think we'd been friends all these years too. Her name is Lyn Lederman, she lives in Los Angeles, and we've been emailing each other multiple times a day for the last few weeks, sharing music and YouTube videos, etc. She even sent me a care package of Tom Lehrer CDs, which I can't wait to start listening to. If any of you are not familiar with Tom Lehrer (and shame on your parents if you are not, you've obviously had a deprived childhood), you must go immediately to YouTube and start listening to him. Trust me, you will not regret it. Just picture this delightful ditty "poisoning pigeons in the park" plus the "Vatican Rag" and you'll get the idea.
Another happy occurence involves Social Security. You might recall that Social Security had decided to deduct an addtional premium of $176 a month based on the huge amount of income on my tax return for 2008 (the sale of the stock). Well, I wrote them a letter asking that they reconsider, enclosing a copy of my tax return for 2009 and of the divorce papers I'd filed, and I just heard back a few days ago that someone new had reviewed my case and decided in my favor and they not only will not be deducting that anymore, they reimbursed me for the three months they'd been deducting it. Thank you, God.
Well, this has turned into a very long post. Some of you might have fallen asleep by now. By the way, the beautiful rose in the photo is one Carla has given me from her garden. My apartment is filled with beautiful flower arrangements that she's given me in the last few weeks. She and I are getting ready for the arrival of two delightful British ladies (or as we've been saying, The British are coming, the British are coming). They are mother and daughter and they spent a day with us last Spring when they were visiting San Francisco. Carla met them when she went to England for that wedding last year. Well, we all had such a good time that this time they're staying for 5 nights in Redwood City no less, (at the wonderful Sofitel Hotel - I sent them a full report after staying there with Trish). We're making dinner for them tomorrow night after they arrive and I'm taking Friday and Monday off so we can play with them.
I think that's enough news for now.
Sunday, April 18, 2010
Ah Sweet Myster of Life...a Postcript
I have to add this postcript. After I had finished the previous posting, I took a shower and then walked into the bedroom to get dressed. I had left the door to the balcony open earlier when I'd made the bed with fresh clean sheets, and I went to close it, as it was past 5:00 and I assumed it was starting to get chilly. But no, wonder of wonders, it was still warm and sunny and so inviting. I haven't sat on my balcony since last Fall and I've sorely missed it. I grabbed my boombox and my iPod and set them by the door facing out onto the balcony, grabbed my book and cushions for the chair, and ventured out. I settled into the chair, closed my eyes as I heard the gentle refrains of the music coming from the iPod mixed with the harmonious chirpings of the birds, felt the sun's rays caress the back of my head and shoulders, and all I could think of was the refrain "Ah sweet mystery of life." It just kept running through my mind as I settled into the ecstasy of the moment, feeling the sweet mystery of the joy I derive from living here.
When I came back inside, I googled the phrase - of course, it's Jeanette MacDonald's voice I was hearing in my head. The song is from Victor Herbert's Naughty Marietta and the entire verse is:
Ah, sweet mystery of life at last I've found thee
Oh, at last I know the secret of it all
All the longing, seeking, striving, waiting, yearning
The idle hopes, and joy and burning tears that fall
For 'tis love and love alone the world is seeking
And ‘tis love and love alone I've waited for
And my heart has heard the answer to its calling
For it is love that rules for ever more
For me, it is the love and peace I've found here at my Carriage House.
When I came back inside, I googled the phrase - of course, it's Jeanette MacDonald's voice I was hearing in my head. The song is from Victor Herbert's Naughty Marietta and the entire verse is:
Ah, sweet mystery of life at last I've found thee
Oh, at last I know the secret of it all
All the longing, seeking, striving, waiting, yearning
The idle hopes, and joy and burning tears that fall
For 'tis love and love alone the world is seeking
And ‘tis love and love alone I've waited for
And my heart has heard the answer to its calling
For it is love that rules for ever more
For me, it is the love and peace I've found here at my Carriage House.
She's Done It All
That's what Helen said about me, and fortunately it's true. My new life is much quieter and calmer than my former life. I don't try out all the new restaurants, I don't see all the new plays, I don't get to the ballet anymore, I'm not at all the jazz concerts anymore, I haven't traveled for two years....but I'm not complaining, for I truly have done it all. I subscribe to the San Francisco Chronicle because I still want to know what is going on, what restaurants are closing or opening, read reviews of all the plays, peruse the travel section, read the entertainment section, but I don't follow up on it. Reading about it is enough for me. My physical condition dictates my activities, and that's okay with me.
This blog is going to be a bit of a hodgepodge. I have news and I have reflections. I'll start with explaining who Helen is. She is this amazing force of life whom I've gotten to know through Brenda. Brenda finally came! We've been planning a birthday celebration since before my birthday last month, but due to Brenda's extremely hectic and busy schedule, it didn't take place until last weekend. But it was worth the wait. We started Friday afternoon with an impromptu cocktail party chez moi, with my niece Kimberly who picked Brenda up at the airport and brought her here. Then early Saturday morning Brenda and I set off for Santana Row in San Jose where Brenda had booked us a room in a beautiful hotel for the night (I love that people want to whisk me off to these glamorous hotels!). We spent the afternoon meeting with Helen and some friends, followed by relaxing in our room, then Helen joined us for a delicious dinner at Left Bank for both of our birthdays (Helen's birthday was just a few days before this weekend). There's something about a French bistro restaurant, like Left Bank, that has an immediate physical and emotional effect on me, just like hearing someone speak French does, or listening to music. I'm like a dog who smells a certain scent - my ears perk up, I feel chills up and down my spine, I stand up straighter, my tail wags (well, maybe not that). I had a glass of a wonderful Sancerre that had whispers of Paris in it, oysters, steak tartare, mussels in a wonderful broth, great French bread, and we finished it off with a delicious creme brulee. I would have purred if I could have - but with a French accent, naturellement. Then we went to the movie theatre a block away and saw Ghost Writer, Polanski's new film. Brenda and I ended the day by relaxing in our room, each of us reading, listening to music. A perfect day. On Sunday we'd been planning on going to the Farmer's Market, but it rained and the wind blew, so we ended up meeting Helen for coffee at Barnes & Noble and talking for several hours (after spending the entire day together on Saturday, we still had so much to talk about - I love my women friends), then eating lunch (lots of food was consumed over the 4-day weekend), and then Brenda and I returned to my carriage house where we curled up on the sofa and relaxed some more. I guess there was lots of relaxing in addition to lots of eating! Monday Helen joined us again for a wonderful lunch at an Italian restaurant in Redwood City, some strolling about, some Scrabble at home, and then Helen took Brenda to the airport around 7 PM. I was sad to see them go, partly because I'd had such a good time with them, but also because I think this is finally the end of my birthday celebrations. Oh wait, no, there's more to come, I'm to meet Mary Lou and Bill for Dim Sum sometime soon! Oh goody. More celebrating.
In case you're wondering about the photo I've posted at the beginning of this blog, that's the latest incarnation of my Family Photo corner. These consist of various photos of my parents and of me and Trish, ranging from a photo of our father at around age 2, to photos of Trish and me as toddlers, and to that wonderful photo of my mother looking up from reading the Sunday paper. I feel that during my marriage I had turned my back on my blood family in a certain sense. I'd only started putting framed photos of them about in the house towards the end of the marriage. For most of the marriage I'd concentrated on being a Lui and being a part of the Lui family. No one had asked me to do this. I think it stemmed from my deep seeded desire for family, I'd been starved for one for so long. When the marriage ended, at first I felt so alone, adrift and lost, but connecting with Trish made me remember that I did still have family, that I'd always been part of another, primal family. I am now glorying in that. My apartment is filled with photos from both my families.
There is news on the medical front. I saw the new MS doctor on March 24th. I was on a high for days afterwards. I finally have a specialist who wants to help me. Here is a blurb about him:
Jeffrey Dunn, MD Associate Director, Stanford Multiple Sclerosis Center Associate Professor of Neurology and Neurological Sciences. Dr. Dunn is a board certified neurologist specializing in the diagnosis, treatment and clinical research of multiple sclerosis and demyelinating disease. With a focus on clinical care, he also conducts research on combination therapy and emerging immunotherapy and has worked as a principal investigator for clinical research studies sponsored by the NIH and other organizations. Dr. Dunn served as president and chief medical officer of the "MS Hub," a novel regional care center at Evergreen Healthcare in Kirkland, WA, before joining the MS Center at Stanford in early 2008. He has been recognized as one of the nation's "top docs" for the last eight consecutive years. Dr, Dunn earned his MD from Temple University and did his specialty training in neurology at the University of Washington.
My cousin Dana in Michigan had recommended him and I am so happy that she did. He's already ordered two full MRIs - one on the brain and one on the spine, plus he's ordered the brand new medication that was just approved by the FDA in January that helps all people with MS, no matter which kind, with their walking and with their fatigue. It's in pill form, not a shot. For the first time, I'm willing to try one of the drugs, partly because I'm beginning to lose quality of life and it is now worth it to me to try it, partly because this is the first MS drug to be in pill form and to not have that many side effects. It does still have side effects, of course, and it will be up to me to decide whether the benefits are worth the discomfort. Dr. Dunn gave me the most complete and extensive exam I've ever had, including interviewing me and getting to know me and asking what I want to accomplish by seeing him, what my fears are, my goals, etc.
My experience so far with Medicare has been very positive, except for the drug plan. I'm not so happy with that. I'm learning all about the donut hole and if I continue with this new MS medication, I will definitely fall into that hole. Stanford has a patient assistance plan and I'm getting more information about that. If this is going to cost me in the thousands of dollars, then of course I can't and won't do it. I'll find out more in the next month or two. In the meantime, I have an appointmet with an MS clinic to see about getting a "walking aid". It's callled "The WalkAide System" and it's a battery operated device that helps with "foot drop", which is what I've been experiencing. After walking for just a short period of time, my legs get heavy, especially my right leg, and I have trouble lifting my right foot, usually ending up by dragging it. This device works with a bluetooth. I have no idea if I'll like it or if it will work for me, but if it does, it'll be free. I like that part!
This is probably enough for one post. I've also included a photo of all the birthday cards I received. The best part about having a blog is that everyone knows when it's your birthday and you get all these birthday cards! I've never received so many, and I love each and every one of them. Thank you, everyone, for helping to make this birthday so memorable.
In the beginning of the blog, I said there would be news and reflections. Well, the reflection is that although I've done it all, and most of it I'm not doing anymore, that doesn't mean that I've stopped living or having new experiences or adventures. Every day still brings something new and delightful and I look forward to having lots more adventures, albeit different ones from before. I'm not through with life yet, not by a long shot. I discover new music almost every day, am meeting new people, discovering new books and tv programs, and every day in my carriage house fills me with peace and happiness. Brenda said, as we were relaxing here Sunday night, that although she loved staying in the hotel, being in the carriage house was as delightful and was like a vacation for her and she almost felt like it was her birthday. That's how I feel every day. Yesterday Carla and I had a day like we used to have, when I wasn't working and when the weather was nice. She helped me do my laundry and hang it out to dry, we went to our favorite Vietnamese restaurant for lunch, we ran some errands, we came back here and sat in the garden talking, and we finished the day by watching that old classic The Snake Pit with Olivia deHavilland. It was a wonderful and magical day.
Thanks for "listening."
This blog is going to be a bit of a hodgepodge. I have news and I have reflections. I'll start with explaining who Helen is. She is this amazing force of life whom I've gotten to know through Brenda. Brenda finally came! We've been planning a birthday celebration since before my birthday last month, but due to Brenda's extremely hectic and busy schedule, it didn't take place until last weekend. But it was worth the wait. We started Friday afternoon with an impromptu cocktail party chez moi, with my niece Kimberly who picked Brenda up at the airport and brought her here. Then early Saturday morning Brenda and I set off for Santana Row in San Jose where Brenda had booked us a room in a beautiful hotel for the night (I love that people want to whisk me off to these glamorous hotels!). We spent the afternoon meeting with Helen and some friends, followed by relaxing in our room, then Helen joined us for a delicious dinner at Left Bank for both of our birthdays (Helen's birthday was just a few days before this weekend). There's something about a French bistro restaurant, like Left Bank, that has an immediate physical and emotional effect on me, just like hearing someone speak French does, or listening to music. I'm like a dog who smells a certain scent - my ears perk up, I feel chills up and down my spine, I stand up straighter, my tail wags (well, maybe not that). I had a glass of a wonderful Sancerre that had whispers of Paris in it, oysters, steak tartare, mussels in a wonderful broth, great French bread, and we finished it off with a delicious creme brulee. I would have purred if I could have - but with a French accent, naturellement. Then we went to the movie theatre a block away and saw Ghost Writer, Polanski's new film. Brenda and I ended the day by relaxing in our room, each of us reading, listening to music. A perfect day. On Sunday we'd been planning on going to the Farmer's Market, but it rained and the wind blew, so we ended up meeting Helen for coffee at Barnes & Noble and talking for several hours (after spending the entire day together on Saturday, we still had so much to talk about - I love my women friends), then eating lunch (lots of food was consumed over the 4-day weekend), and then Brenda and I returned to my carriage house where we curled up on the sofa and relaxed some more. I guess there was lots of relaxing in addition to lots of eating! Monday Helen joined us again for a wonderful lunch at an Italian restaurant in Redwood City, some strolling about, some Scrabble at home, and then Helen took Brenda to the airport around 7 PM. I was sad to see them go, partly because I'd had such a good time with them, but also because I think this is finally the end of my birthday celebrations. Oh wait, no, there's more to come, I'm to meet Mary Lou and Bill for Dim Sum sometime soon! Oh goody. More celebrating.
In case you're wondering about the photo I've posted at the beginning of this blog, that's the latest incarnation of my Family Photo corner. These consist of various photos of my parents and of me and Trish, ranging from a photo of our father at around age 2, to photos of Trish and me as toddlers, and to that wonderful photo of my mother looking up from reading the Sunday paper. I feel that during my marriage I had turned my back on my blood family in a certain sense. I'd only started putting framed photos of them about in the house towards the end of the marriage. For most of the marriage I'd concentrated on being a Lui and being a part of the Lui family. No one had asked me to do this. I think it stemmed from my deep seeded desire for family, I'd been starved for one for so long. When the marriage ended, at first I felt so alone, adrift and lost, but connecting with Trish made me remember that I did still have family, that I'd always been part of another, primal family. I am now glorying in that. My apartment is filled with photos from both my families.
There is news on the medical front. I saw the new MS doctor on March 24th. I was on a high for days afterwards. I finally have a specialist who wants to help me. Here is a blurb about him:
Jeffrey Dunn, MD Associate Director, Stanford Multiple Sclerosis Center Associate Professor of Neurology and Neurological Sciences. Dr. Dunn is a board certified neurologist specializing in the diagnosis, treatment and clinical research of multiple sclerosis and demyelinating disease. With a focus on clinical care, he also conducts research on combination therapy and emerging immunotherapy and has worked as a principal investigator for clinical research studies sponsored by the NIH and other organizations. Dr. Dunn served as president and chief medical officer of the "MS Hub," a novel regional care center at Evergreen Healthcare in Kirkland, WA, before joining the MS Center at Stanford in early 2008. He has been recognized as one of the nation's "top docs" for the last eight consecutive years. Dr, Dunn earned his MD from Temple University and did his specialty training in neurology at the University of Washington.
My cousin Dana in Michigan had recommended him and I am so happy that she did. He's already ordered two full MRIs - one on the brain and one on the spine, plus he's ordered the brand new medication that was just approved by the FDA in January that helps all people with MS, no matter which kind, with their walking and with their fatigue. It's in pill form, not a shot. For the first time, I'm willing to try one of the drugs, partly because I'm beginning to lose quality of life and it is now worth it to me to try it, partly because this is the first MS drug to be in pill form and to not have that many side effects. It does still have side effects, of course, and it will be up to me to decide whether the benefits are worth the discomfort. Dr. Dunn gave me the most complete and extensive exam I've ever had, including interviewing me and getting to know me and asking what I want to accomplish by seeing him, what my fears are, my goals, etc.
My experience so far with Medicare has been very positive, except for the drug plan. I'm not so happy with that. I'm learning all about the donut hole and if I continue with this new MS medication, I will definitely fall into that hole. Stanford has a patient assistance plan and I'm getting more information about that. If this is going to cost me in the thousands of dollars, then of course I can't and won't do it. I'll find out more in the next month or two. In the meantime, I have an appointmet with an MS clinic to see about getting a "walking aid". It's callled "The WalkAide System" and it's a battery operated device that helps with "foot drop", which is what I've been experiencing. After walking for just a short period of time, my legs get heavy, especially my right leg, and I have trouble lifting my right foot, usually ending up by dragging it. This device works with a bluetooth. I have no idea if I'll like it or if it will work for me, but if it does, it'll be free. I like that part!
This is probably enough for one post. I've also included a photo of all the birthday cards I received. The best part about having a blog is that everyone knows when it's your birthday and you get all these birthday cards! I've never received so many, and I love each and every one of them. Thank you, everyone, for helping to make this birthday so memorable.
In the beginning of the blog, I said there would be news and reflections. Well, the reflection is that although I've done it all, and most of it I'm not doing anymore, that doesn't mean that I've stopped living or having new experiences or adventures. Every day still brings something new and delightful and I look forward to having lots more adventures, albeit different ones from before. I'm not through with life yet, not by a long shot. I discover new music almost every day, am meeting new people, discovering new books and tv programs, and every day in my carriage house fills me with peace and happiness. Brenda said, as we were relaxing here Sunday night, that although she loved staying in the hotel, being in the carriage house was as delightful and was like a vacation for her and she almost felt like it was her birthday. That's how I feel every day. Yesterday Carla and I had a day like we used to have, when I wasn't working and when the weather was nice. She helped me do my laundry and hang it out to dry, we went to our favorite Vietnamese restaurant for lunch, we ran some errands, we came back here and sat in the garden talking, and we finished the day by watching that old classic The Snake Pit with Olivia deHavilland. It was a wonderful and magical day.
Thanks for "listening."
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