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!
Saturday, August 28, 2010
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."
Sunday, March 21, 2010
Fears and Conquests
That's how I began my sharing at last week's Support Group session. The last month has been a mixture of both, sort of a combination of little steps backwards and big steps forward. I suppose that as long as the backward steps are little and the forward steps big, I'm doing ok.
I'll start with the conquests, just like I did in Group. First, I want to write how much I love being in this Group. My original intent was to network with people on how to manage and survive these health challenges we all have. But I'm getting so much more out of being there and getting to know them. It's become a safe place to express the fears. We all have the same fear - that of being a burden - but you don't really want to talk about it with anyone, for fear of becoming a burden just from talking about it. But in this Group we all understand, we've all been there, and that creates a wonderful feeling of "being home", of being in a safe place where you're accepted and loved and understood.
Anyway, I finally turned 65. And thanks to my sister Trish, I got to celebrate it. We spent two glorious nights at the French Sofitel Hotel in Redwood Shores (as far away as you can get from where I live and still be in Redwood City!). We left the hotel only once, to go to a luxurious spa less than a mile away (called Spa Luxe, strangely enough), where I was treated by Trish to a wonderful hour facial followed by an hour massage. We were at the spa 4 hours! We'd been planning to go to a restaurant outside the hotel for our second dinner, but we were so relaxed, neither of us felt like putting on makeup or leaving the hotel, so when we got back from the spa we went straight to the hotel bar and had cocktails and then another wonderful dinner. I've posted a slide show that pretty much sums up our decadent birthday celebration. If you click on one of the slides, it will take you to the web album with captions which will give you the full story. Thank you so much, Trish. It was very special.
I also am now officially insured by Medicare along with AARP (United Healthcare) - no more Kaiser. I already have appointments with a new dermatologist and an MS specialist and have chosen a new primary physician, all of whom came highly recommended and have excellent reviews on the internet. In getting my medical records forwarded to these new doctors, I found out that the last MRI I had done was in 1998. This is the main reason I chose to leave Kaiser. I find that outrageous.
I spent Thursday evening in San Francisco with Dennis and Linda and Michael and Francine. Our old house on Ashbury Street is up for sale - listed at just under $3 million - and they suggested I come up and go to the wine and cheese open house there and then they'd take me out for dinner for my birthday. I took the train up. It made going up there so easy. It's opened up a whole new world for me. I've been reluctant to go to the city because I already drive so much, plus I hate the parking there. But I love the city and the museums and theatres and restaurants and the friends I have there. I think now I will go up much more often. I'm very happy about that. By the way, for those interested, there's a slide show of the house which the listing agent has put on the internet at http://www.908ashbury.com/. Just be prepared - the owners have made a lot of changes and the staging is very modern.
Now for the fears. I've already written how the MS is steadily getting worse. I tire easily and don't seem to be able to walk very far without my legs getting heavy and my feet dragging. Well, last Saturday I took a hot shower (which I normally do, I love hot showers), and for the first time, I felt the hot water affecting my legs. My thighs began to go numb. This numbness lasted for almost an entire week. The nonprofit where I work had their annual gala fundraiser that evening and I was working at it, and I had to bring my cane. Even with the cane, I had difficulty getting around. Trish came with me and was an enormous help. I continued to have problems walking until Thursday evening.
Now here's where it gets very interesting. Thursday morning I had taken photos at the site of Edwin's current estate sale, which entailed going up and down stairs in an 8,000 sq ft house. I was exhausted by the time I had to take the train for SF. I rested on the train, but I was really dragging. I somehow made it from the train to Francine's car where she was waiting to pick me up - I climbed up into the car - and when I turned to greet her and started talking, I noticed this instant transformation. I went from being an exhausted, limp, drained shell of a gal to being an energetic, excited, happy, enthusiastic, non-stop talking and laughing whippersnapper. Instantly! If someone had been watching, they would have thought someone else had taken my place. And I stayed that way. I was able to go up and down the three flights of stairs at 908 Ashbury, take photos, tour the entire house, and then go to dinner. I didn't even sleep on the train back. In fact, I didn't even need my cane to walk to my car from the train. I wrote in a previous post about my having the happiness gene. I also seem to have the "people" gene. I thrive when I'm with my friends. I've noticed it when Carla comes up to watch a movie. I'll be tired and lacking any energy, and then she comes up and I'm cracking jokes and laughing.
To get back to the fear part. I was very worried that maybe I had progressed to a point of no return, with images of the dreaded wheelchair hovering on the edge of my consciousness, but now I feel NOT YET. I just need to make sure that I keep seeing people. It's too easy to collapse on my couch and watch tv or read. I spend an inordinate amount of time doing that. Maybe too much time. There's a fine line between pacing yourself and becoming a hermit. So that's my new resolution - to make more of an effort to get out and do things and see people. All the while being reasonable and not overdoing it of course.
The other fear that keeps popping up in my mind is about finding new sources of income, where I can work out of my home or at least locally. The stickers on my Prius expire this coming January. I cannot do that commute to Milpitas if I can't use the commuter lane. It would take me 2 hours to get home. I need to start looking now. Unfortunately, I will have to keep working the rest of my life. I've accepted that. I've never minded working. It's been good for me this last year. It's gotten me out of the house, it keeps my brain oiled, I enjoy being with people. However, now that the MS is getting worse, for the first time I worry about being ABLE to keep working.
Another step backward concerns the divorce. I'd assumed the divorce would become final on the 24th of March. That's what the paperwork said. But when I called the County Courthouse to make sure I could pick up a certified copy on the 24th, the clerk asked me what made me think it would be final then. It turns out that the judge, instead of signing off on it, instead sent it on up to South San Francisco, which means there's some kind of problem. What kind of problem I don't know. So I'm left hanging in limbo. This means that Medicare keeps getting to deduct an extra $178 a month from my Social Security. Don't ask. It's a long story.
However, I remain optimistic, I hold my head high, I force my back straight and I will those leg muscles to move. I find new music that thrills me, I read new books which take me to far off lands, I make myself an apple martini. Spring has sprung and Carla's garden is in glorious bloom. I bought a beautiful frame today in which to hang the incredible photo which cousin Susan sent me. Carla baked scrumptious "refrigerator cookies" today which we ate fresh out of the oven. I refuse to look backwards and I won't hide from the future, and in the meantime I am enjoying the present.
I'll start with the conquests, just like I did in Group. First, I want to write how much I love being in this Group. My original intent was to network with people on how to manage and survive these health challenges we all have. But I'm getting so much more out of being there and getting to know them. It's become a safe place to express the fears. We all have the same fear - that of being a burden - but you don't really want to talk about it with anyone, for fear of becoming a burden just from talking about it. But in this Group we all understand, we've all been there, and that creates a wonderful feeling of "being home", of being in a safe place where you're accepted and loved and understood.
Anyway, I finally turned 65. And thanks to my sister Trish, I got to celebrate it. We spent two glorious nights at the French Sofitel Hotel in Redwood Shores (as far away as you can get from where I live and still be in Redwood City!). We left the hotel only once, to go to a luxurious spa less than a mile away (called Spa Luxe, strangely enough), where I was treated by Trish to a wonderful hour facial followed by an hour massage. We were at the spa 4 hours! We'd been planning to go to a restaurant outside the hotel for our second dinner, but we were so relaxed, neither of us felt like putting on makeup or leaving the hotel, so when we got back from the spa we went straight to the hotel bar and had cocktails and then another wonderful dinner. I've posted a slide show that pretty much sums up our decadent birthday celebration. If you click on one of the slides, it will take you to the web album with captions which will give you the full story. Thank you so much, Trish. It was very special.
I also am now officially insured by Medicare along with AARP (United Healthcare) - no more Kaiser. I already have appointments with a new dermatologist and an MS specialist and have chosen a new primary physician, all of whom came highly recommended and have excellent reviews on the internet. In getting my medical records forwarded to these new doctors, I found out that the last MRI I had done was in 1998. This is the main reason I chose to leave Kaiser. I find that outrageous.
I spent Thursday evening in San Francisco with Dennis and Linda and Michael and Francine. Our old house on Ashbury Street is up for sale - listed at just under $3 million - and they suggested I come up and go to the wine and cheese open house there and then they'd take me out for dinner for my birthday. I took the train up. It made going up there so easy. It's opened up a whole new world for me. I've been reluctant to go to the city because I already drive so much, plus I hate the parking there. But I love the city and the museums and theatres and restaurants and the friends I have there. I think now I will go up much more often. I'm very happy about that. By the way, for those interested, there's a slide show of the house which the listing agent has put on the internet at http://www.908ashbury.com/. Just be prepared - the owners have made a lot of changes and the staging is very modern.
Now for the fears. I've already written how the MS is steadily getting worse. I tire easily and don't seem to be able to walk very far without my legs getting heavy and my feet dragging. Well, last Saturday I took a hot shower (which I normally do, I love hot showers), and for the first time, I felt the hot water affecting my legs. My thighs began to go numb. This numbness lasted for almost an entire week. The nonprofit where I work had their annual gala fundraiser that evening and I was working at it, and I had to bring my cane. Even with the cane, I had difficulty getting around. Trish came with me and was an enormous help. I continued to have problems walking until Thursday evening.
Now here's where it gets very interesting. Thursday morning I had taken photos at the site of Edwin's current estate sale, which entailed going up and down stairs in an 8,000 sq ft house. I was exhausted by the time I had to take the train for SF. I rested on the train, but I was really dragging. I somehow made it from the train to Francine's car where she was waiting to pick me up - I climbed up into the car - and when I turned to greet her and started talking, I noticed this instant transformation. I went from being an exhausted, limp, drained shell of a gal to being an energetic, excited, happy, enthusiastic, non-stop talking and laughing whippersnapper. Instantly! If someone had been watching, they would have thought someone else had taken my place. And I stayed that way. I was able to go up and down the three flights of stairs at 908 Ashbury, take photos, tour the entire house, and then go to dinner. I didn't even sleep on the train back. In fact, I didn't even need my cane to walk to my car from the train. I wrote in a previous post about my having the happiness gene. I also seem to have the "people" gene. I thrive when I'm with my friends. I've noticed it when Carla comes up to watch a movie. I'll be tired and lacking any energy, and then she comes up and I'm cracking jokes and laughing.
To get back to the fear part. I was very worried that maybe I had progressed to a point of no return, with images of the dreaded wheelchair hovering on the edge of my consciousness, but now I feel NOT YET. I just need to make sure that I keep seeing people. It's too easy to collapse on my couch and watch tv or read. I spend an inordinate amount of time doing that. Maybe too much time. There's a fine line between pacing yourself and becoming a hermit. So that's my new resolution - to make more of an effort to get out and do things and see people. All the while being reasonable and not overdoing it of course.
The other fear that keeps popping up in my mind is about finding new sources of income, where I can work out of my home or at least locally. The stickers on my Prius expire this coming January. I cannot do that commute to Milpitas if I can't use the commuter lane. It would take me 2 hours to get home. I need to start looking now. Unfortunately, I will have to keep working the rest of my life. I've accepted that. I've never minded working. It's been good for me this last year. It's gotten me out of the house, it keeps my brain oiled, I enjoy being with people. However, now that the MS is getting worse, for the first time I worry about being ABLE to keep working.
Another step backward concerns the divorce. I'd assumed the divorce would become final on the 24th of March. That's what the paperwork said. But when I called the County Courthouse to make sure I could pick up a certified copy on the 24th, the clerk asked me what made me think it would be final then. It turns out that the judge, instead of signing off on it, instead sent it on up to South San Francisco, which means there's some kind of problem. What kind of problem I don't know. So I'm left hanging in limbo. This means that Medicare keeps getting to deduct an extra $178 a month from my Social Security. Don't ask. It's a long story.
However, I remain optimistic, I hold my head high, I force my back straight and I will those leg muscles to move. I find new music that thrills me, I read new books which take me to far off lands, I make myself an apple martini. Spring has sprung and Carla's garden is in glorious bloom. I bought a beautiful frame today in which to hang the incredible photo which cousin Susan sent me. Carla baked scrumptious "refrigerator cookies" today which we ate fresh out of the oven. I refuse to look backwards and I won't hide from the future, and in the meantime I am enjoying the present.
Thursday, February 25, 2010
A Month To Remember
Actually, it's going to be two months to remember by the time we get to the end of March. So many things are happening so fast, that my head is spinning - in time to the wonderful sounds of Mark Murphy playing in iTunes right now.
It started with the surprise delivery of a dozen ruby red roses for Valentine's Day from my precious Brenda. What would I do without her. She never allows me to feel neglected or alone or unloved. She literally will not allow it. The roses arrived on Saturday, February 13th, the day I spent with my niece Amy. I hadn't seen Amy for quite a while and it was wonderful to see her. She came armed with a bag full of gluten free food products for me to try. I have promised her I will follow a strict gluten free diet for two weeks (to start after poker night and the following night's birthday extravaganza at Liza's, of course, so I started a week ago Wednesday). We're hoping for two positive results from this - an improvement in both the MS and the bloating I've been struggling with for many years. I've been on the diet for over a week now and I have to admit that I've had very little to no bloating, and the only time I've had bloating is when I mistakenly ate something with wheat in it. As for the MS, I did think there were a couple of days when I had more energy than I usually do, considering the activities I'd been involved in, and I haven't used a cane at all. So it all looks very promising. Thank you, Amy!
The next big event revolves around my turning 65, leaving Kaiser (a very big step for me) and signing up for Medicare. I like my primary doctor there very much, and so I had a final appointment with her last week (I hadn't had a physical since shortly before moving to the carriage house, so I was due). We both got very emotional, exchanged multiple hugs and she wished me luck and all the best. She also ordered a slew of blood tests just for good meansure, and I'm happy to report that every single one of them came out positive.
I did a lot of research on what kind of insurance to get and with which company. I sent out emails to everyone I could think of who might be able to advise me, and I received wonderful, long emails and long distance phone calls from people all over the country telling me of their experiences, their choices and why, things to look out for, etc. This was extremely helpful and I thank everyone. I finally decided on AARP Supplemental Insurance Plan F and Part D Tier 2. I also decided to use an independent agent to help me and I'm so glad I did. A friend and neighbor from Vernal Way recommended her agent, a lovely woman named Connie. Connie confirmed that I'd made the right choice for now, but added that she would check again for me every year and if ever the situation changes such that I would be better off with another company or another plan, she would help me change. In the state of California, there's an open window of enrollment every year between November 15 and December 31st where you can change and no one looks at pre-existing conditions. I feel very good about this. It's a comforting feeling to know you have an advocate whom you can call at any time with questions or concerns and who doesn't work for any of the insurance companies. She's also a breast cancer survivor and she stayed and chatted with me and Carla for quite awhile before leaving. She was here yesterday with the paperwork. This weekend I'm going to order a final supply of the one drug that I take (for hypothyroid) through Kaiser as I don't know when I'll choose a new primary physician.
There's also been some exciting developments in the field of MS research and treatment. Carla's friend Peter in London sent me an article on a new "cause" of MS - here's a quote:
damage to the nervous system may instead be caused by poor blood flow in narrowed veins in the chest, neck and head. This allows toxins to break through what is known as the blood-brain barrier to attack nerves in the brain. The solution, say surgeons, is to widen the veins with keyhole surgery using a balloon or thin metal tubes known as stents. Both techniques are already used to treat narrowed heart arteries.
The most exciting part is that the article says this surgery has already been performed successfully at Stanford. Thanks to my cousin Dana in Michigan, who is a doctor in internal medicine, I have found a specialist in MS at Stanford with excellent credentials and who is accepting new patients. This is the whole reason I am leaving Kaiser. I am getting zero care for the MS there. They haven't allowed me to have another MRI since my initial ones when I was first diagnosed. How can they tell what is really happening with me without an MRI? Kaiser's response was that since I refused to take the recommended drugs, why bother. Not a good answer as far as I am concerned. There is also a brand new drug just approved by the FDA in January that helps MS patients with their walking - including Secondary Progressive MS patients like myself. All the other drugs are just for Relapsing Remitting patients, which is what I used to have before it changed to Secondary Progressive.
So this is all good.
There's been another new development. I've spoken of the Live Strong, Live Well class that Carla and I took at the local YMCA. We met a wonderful (boy, I use that word a lot - well, why not!) group of people there, all cancer survivors, and I do mean survivors. We've all stayed in touch. We've already had one holiday party and are planning our next party which will be designed around mustard tasting (as opposed to wine tasting). Anyway, Leslie, who was in the class, told me about a support group for people with chronic illnesses that she attends and she said there was at least one person in the group with MS. Trish had been urging me for some time to find a local support group where I could network with people, find out what works for them and what doesn't, etc. Well, this is destiny in action. The meetings take place at the Buddhist Meditation place where my college roommate Andrea took me a year ago - and which is only 5 blocks away! When I realized that, I knew it was meant to be. But I tried very hard not to get my expectations up. I know I tend to do that. So I went yesterday, not expecting much.
I don't even know how to put into words how excited I am about finding this group. I felt like I was home. My soul is still twittering and squealing with happiness. It's not just because we are all facing similar challenges. It's because of who they are, each and every one of them. They are poets and writers, a retired psychologist, artists. They welcomed me right away, made me feel as if I'd known them forever, plus there was so much love in that room - love and compassion and support and understanding and offering of strength - which I felt wash over me and fill and surround my entire inner being. I emailed them immediately upon returning home, sending them links to the recent articles on MS which I had discussed when I told my story (we were seated in a circle and everyone shared their particular stories and how and why they'd joined this group - they did this for me so I could get to know everyone) and I've since been emailing back and forth with one of them. We've been exchanging links and websites and blogs. Some of them are part of a blog called Caring Bridge where cancer patients can post blogs to update their loved ones as to how they are doing. It's beautiful. People in this group have posted poems and articles there and have running journals. I love being part of that. The group meets every Wednesday 1:30-3 so I will try to arrange my work schedule so I can be there as often as possible.
Trish has a big celebration planned for my 65th. We're going to the Sofitel Hotel, a luxury hotel nearby, for two nights. She said the entire stay is her treat - massage, dinners, whatever we end up doing. I'll be Queen For Two Days! I'm really looking forward to it. The last time we did something like that was many many years ago when she had Lasik surgery in Cupertino (around 25 miles south of here) and I went with her and we stayed in a hotel for two nights. I remember lots of giggling took place, as always does when we get together. Then Brenda is hoping to come down at the end of the month for a couple of days of drinking and celebrating - oh boy.
To round out the celebrations, the divorce will become final on March 24th. Then I can truly start my new life.
This is a big longer than usual, but I had too much to say. I'll be posting two photographs. One is of the lovely roses from Brenda. The other is of a surprised that arrived in the mail a couple of days ago from my cousin Susan in upstate New York. She'd found a large photo of our fathers and their sisters and our grandparents taken when the four siblings were young and she had copies made and sent to each of the cousins - to Florida, California, Michigan and New York. What a loving and generous thing to do. I can't wait to frame it and hang it.
I'll legitimately be a Senior Citizen next time I write!
It started with the surprise delivery of a dozen ruby red roses for Valentine's Day from my precious Brenda. What would I do without her. She never allows me to feel neglected or alone or unloved. She literally will not allow it. The roses arrived on Saturday, February 13th, the day I spent with my niece Amy. I hadn't seen Amy for quite a while and it was wonderful to see her. She came armed with a bag full of gluten free food products for me to try. I have promised her I will follow a strict gluten free diet for two weeks (to start after poker night and the following night's birthday extravaganza at Liza's, of course, so I started a week ago Wednesday). We're hoping for two positive results from this - an improvement in both the MS and the bloating I've been struggling with for many years. I've been on the diet for over a week now and I have to admit that I've had very little to no bloating, and the only time I've had bloating is when I mistakenly ate something with wheat in it. As for the MS, I did think there were a couple of days when I had more energy than I usually do, considering the activities I'd been involved in, and I haven't used a cane at all. So it all looks very promising. Thank you, Amy!
The next big event revolves around my turning 65, leaving Kaiser (a very big step for me) and signing up for Medicare. I like my primary doctor there very much, and so I had a final appointment with her last week (I hadn't had a physical since shortly before moving to the carriage house, so I was due). We both got very emotional, exchanged multiple hugs and she wished me luck and all the best. She also ordered a slew of blood tests just for good meansure, and I'm happy to report that every single one of them came out positive.
I did a lot of research on what kind of insurance to get and with which company. I sent out emails to everyone I could think of who might be able to advise me, and I received wonderful, long emails and long distance phone calls from people all over the country telling me of their experiences, their choices and why, things to look out for, etc. This was extremely helpful and I thank everyone. I finally decided on AARP Supplemental Insurance Plan F and Part D Tier 2. I also decided to use an independent agent to help me and I'm so glad I did. A friend and neighbor from Vernal Way recommended her agent, a lovely woman named Connie. Connie confirmed that I'd made the right choice for now, but added that she would check again for me every year and if ever the situation changes such that I would be better off with another company or another plan, she would help me change. In the state of California, there's an open window of enrollment every year between November 15 and December 31st where you can change and no one looks at pre-existing conditions. I feel very good about this. It's a comforting feeling to know you have an advocate whom you can call at any time with questions or concerns and who doesn't work for any of the insurance companies. She's also a breast cancer survivor and she stayed and chatted with me and Carla for quite awhile before leaving. She was here yesterday with the paperwork. This weekend I'm going to order a final supply of the one drug that I take (for hypothyroid) through Kaiser as I don't know when I'll choose a new primary physician.
There's also been some exciting developments in the field of MS research and treatment. Carla's friend Peter in London sent me an article on a new "cause" of MS - here's a quote:
damage to the nervous system may instead be caused by poor blood flow in narrowed veins in the chest, neck and head. This allows toxins to break through what is known as the blood-brain barrier to attack nerves in the brain. The solution, say surgeons, is to widen the veins with keyhole surgery using a balloon or thin metal tubes known as stents. Both techniques are already used to treat narrowed heart arteries.
The most exciting part is that the article says this surgery has already been performed successfully at Stanford. Thanks to my cousin Dana in Michigan, who is a doctor in internal medicine, I have found a specialist in MS at Stanford with excellent credentials and who is accepting new patients. This is the whole reason I am leaving Kaiser. I am getting zero care for the MS there. They haven't allowed me to have another MRI since my initial ones when I was first diagnosed. How can they tell what is really happening with me without an MRI? Kaiser's response was that since I refused to take the recommended drugs, why bother. Not a good answer as far as I am concerned. There is also a brand new drug just approved by the FDA in January that helps MS patients with their walking - including Secondary Progressive MS patients like myself. All the other drugs are just for Relapsing Remitting patients, which is what I used to have before it changed to Secondary Progressive.
So this is all good.
There's been another new development. I've spoken of the Live Strong, Live Well class that Carla and I took at the local YMCA. We met a wonderful (boy, I use that word a lot - well, why not!) group of people there, all cancer survivors, and I do mean survivors. We've all stayed in touch. We've already had one holiday party and are planning our next party which will be designed around mustard tasting (as opposed to wine tasting). Anyway, Leslie, who was in the class, told me about a support group for people with chronic illnesses that she attends and she said there was at least one person in the group with MS. Trish had been urging me for some time to find a local support group where I could network with people, find out what works for them and what doesn't, etc. Well, this is destiny in action. The meetings take place at the Buddhist Meditation place where my college roommate Andrea took me a year ago - and which is only 5 blocks away! When I realized that, I knew it was meant to be. But I tried very hard not to get my expectations up. I know I tend to do that. So I went yesterday, not expecting much.
I don't even know how to put into words how excited I am about finding this group. I felt like I was home. My soul is still twittering and squealing with happiness. It's not just because we are all facing similar challenges. It's because of who they are, each and every one of them. They are poets and writers, a retired psychologist, artists. They welcomed me right away, made me feel as if I'd known them forever, plus there was so much love in that room - love and compassion and support and understanding and offering of strength - which I felt wash over me and fill and surround my entire inner being. I emailed them immediately upon returning home, sending them links to the recent articles on MS which I had discussed when I told my story (we were seated in a circle and everyone shared their particular stories and how and why they'd joined this group - they did this for me so I could get to know everyone) and I've since been emailing back and forth with one of them. We've been exchanging links and websites and blogs. Some of them are part of a blog called Caring Bridge where cancer patients can post blogs to update their loved ones as to how they are doing. It's beautiful. People in this group have posted poems and articles there and have running journals. I love being part of that. The group meets every Wednesday 1:30-3 so I will try to arrange my work schedule so I can be there as often as possible.
Trish has a big celebration planned for my 65th. We're going to the Sofitel Hotel, a luxury hotel nearby, for two nights. She said the entire stay is her treat - massage, dinners, whatever we end up doing. I'll be Queen For Two Days! I'm really looking forward to it. The last time we did something like that was many many years ago when she had Lasik surgery in Cupertino (around 25 miles south of here) and I went with her and we stayed in a hotel for two nights. I remember lots of giggling took place, as always does when we get together. Then Brenda is hoping to come down at the end of the month for a couple of days of drinking and celebrating - oh boy.
To round out the celebrations, the divorce will become final on March 24th. Then I can truly start my new life.
This is a big longer than usual, but I had too much to say. I'll be posting two photographs. One is of the lovely roses from Brenda. The other is of a surprised that arrived in the mail a couple of days ago from my cousin Susan in upstate New York. She'd found a large photo of our fathers and their sisters and our grandparents taken when the four siblings were young and she had copies made and sent to each of the cousins - to Florida, California, Michigan and New York. What a loving and generous thing to do. I can't wait to frame it and hang it.
I'll legitimately be a Senior Citizen next time I write!
Wednesday, February 3, 2010
The year I officially become a senior citizen
This is that year. I turn 65 next month. The last 6 months I've been inundated with sales pitches from insurance companies seeking my business. Now that my birthday is less than a month away, I'm seriously poring through all this pile of brochures and paperwork so that I can make an informed decision. I've pretty much decided to leave Kaiser, the HMO I've been with since 1989. They were great in the beginning, especially during the whole breast cancer journey, but about 10 years ago they started cutting costs and I am not very happy with the care I'm getting (or not getting). I'd been intending to stay with them because of the convenience of having all my doctors and laboratories in one place that's less than 2 miles from where I live, but now that my MS is worsening at such a rapid pace, I realize it's time to become more proactive in my medical care and try to find some good help. It's just so confusing! I thought it would be relatively simple - just choose between AARP and Anthem and sign up for Medicare. But each entity has multiple plans and each plan has several options, and so on. You'd think they'd make it simpler for us senior citizens with dwindling mental capacities. When are we getting that health care reform??!!!
There have been some more sad events. My Uncle Howard Schaeffer died, not too long after my Aunt Anita died. As some might remember, they became surrogate parents for me after my parents died. They always made me feel I had a home with them. I stayed with them when I would visit from Paris and I visited them often in Florida after they moved there. I felt as though I belonged and was part of their family. Losing them has affected me almost more than losing my parents, although that's probably because my parents died so long ago. My cousin Joanie shared with me the eulogies she gave at their respective funerals, which I appreciated because I couldn't go myself. All my other cousins were there, flying in from various points north and west, which was a true testament to how everyone felt about them.
And then suddenly, out of the blue, Jack King died. Jack, who was always there for everyone else. He was one of Elson's oldest friends (old in the number of years they knew each other, not in age, for Jack was only one year older than I am) and was always there for us, ready with his friendship and support. I can't believe he's gone. He'd become Charlton, our son's, right hand man in Charlton's restaurant business and they spent more time together than Charlton had probably ever spent with his father. I don't know what Charlton is going to do now. My heart also breaks for Peggy, Jack's wife (I don't like to use the word "widow"). They were a great couple.
And here I am, still here, even though I never expected to live past 46 (the age of my mother when she died). I seem to be indestructible. I'm withering, though. I tire easily, have trouble walking (except for bursts of brilliance, like at Thanksgiving and also the other night walking from the BART station to Herbst Theatre). Those bursts give me hope, and that's why I want to change doctors.
The divorce is almost final. I filed the last paperwork (the default judgment) last month and if the judge doesn't object or intervene, the divorce will become final March 24th. So March is a pivotal month this year. I of course have mixed feelings. I am still not comfortable with not being at all in contact with Elson. We shared so much for over 30 years. I still think of him when I watch certain tv programs or hear certain music or read an article in the paper - I want to call him and tell him about it. Maybe later this year we can do that. I do know that he's doing well and is moving on. He has a nice apartment, a car, and even a job - working at Costco of all places. Such irony. I'm glad he's doing well. I always knew he would.
I'm still having problems accepting my being cut off from most of the Lui family. It makes no sense to me, and I go back and forth with how I feel about it. Mostly I feel abandoned. Maybe that feeling will never go away.
But I do have a wonderful life. I treasure my new friends - mainly Carla and Liza. What a difference they have made in my life. Maybe I'm being unreasonable, wanting both the old and the new. Maybe I needed to create this space for the new. Maybe that's the way it has to be, for it to work.
Speaking of work, I love my job, but there are problems connected with it. The drive is sometimes debilitating and I don't have any energy for doing anything at all once I get home. The saving grace is that the stickers on the Prius allow me to use the commuter lane, but the stickers expire in January 2011 and then what do I do. Even the stickers sometimes don't help - last Friday it took me an hour and a half to get home when normally it should take 25 minutes. It was raining quite heavily, there was flooding, and all the roads were backed up. It's going to be a rough, wet winter.
The solution is for me to first find additional work here in my neighborhood to supplement my income. As the year progresses, I can figure out what to do with my current job. I'd like to continue there as I like the people and the work, but maybe I could reduce my hours going only two days a week and at easier commute times. However, I can't reduce my hours until I find other work to supplement it. Thus my dilemma. Any suggestions? My talents are bookkeeping, administrative aide, and iTunes and iPod technical support. Not to mention comic relief!
The last subject I would like to comment on is the happiness gene. I am glad to report that I think I have one. No matter what is happening in my life, no matter how upset or distraught I might be, I can always shift immediately into happiness and delight. All it takes is a song, a movie, a play, a book, a friend, a sunset, an apple martini, a good meal, a molasses cookie baked by Carla, a childhood memory shared with my sister, a tv program, a joke in an email, a phone call, a photo of one of my grandchildren, dim sum with family, an impromptu dinner at Liza's, Edwin suddenly joining me and Carla to watch the Golden Globes, an evening with friends......I could go on and on, but the point is that it doesn't take very much to lift me out the doldrums and to have me feel joy and delight. Therefore, I have concluded that I definitely have what I call the happiness gene. And that is what got me through the last few years and enables me to still be here. I feel very lucky to have it. And I will end on that note.
There have been some more sad events. My Uncle Howard Schaeffer died, not too long after my Aunt Anita died. As some might remember, they became surrogate parents for me after my parents died. They always made me feel I had a home with them. I stayed with them when I would visit from Paris and I visited them often in Florida after they moved there. I felt as though I belonged and was part of their family. Losing them has affected me almost more than losing my parents, although that's probably because my parents died so long ago. My cousin Joanie shared with me the eulogies she gave at their respective funerals, which I appreciated because I couldn't go myself. All my other cousins were there, flying in from various points north and west, which was a true testament to how everyone felt about them.
And then suddenly, out of the blue, Jack King died. Jack, who was always there for everyone else. He was one of Elson's oldest friends (old in the number of years they knew each other, not in age, for Jack was only one year older than I am) and was always there for us, ready with his friendship and support. I can't believe he's gone. He'd become Charlton, our son's, right hand man in Charlton's restaurant business and they spent more time together than Charlton had probably ever spent with his father. I don't know what Charlton is going to do now. My heart also breaks for Peggy, Jack's wife (I don't like to use the word "widow"). They were a great couple.
And here I am, still here, even though I never expected to live past 46 (the age of my mother when she died). I seem to be indestructible. I'm withering, though. I tire easily, have trouble walking (except for bursts of brilliance, like at Thanksgiving and also the other night walking from the BART station to Herbst Theatre). Those bursts give me hope, and that's why I want to change doctors.
The divorce is almost final. I filed the last paperwork (the default judgment) last month and if the judge doesn't object or intervene, the divorce will become final March 24th. So March is a pivotal month this year. I of course have mixed feelings. I am still not comfortable with not being at all in contact with Elson. We shared so much for over 30 years. I still think of him when I watch certain tv programs or hear certain music or read an article in the paper - I want to call him and tell him about it. Maybe later this year we can do that. I do know that he's doing well and is moving on. He has a nice apartment, a car, and even a job - working at Costco of all places. Such irony. I'm glad he's doing well. I always knew he would.
I'm still having problems accepting my being cut off from most of the Lui family. It makes no sense to me, and I go back and forth with how I feel about it. Mostly I feel abandoned. Maybe that feeling will never go away.
But I do have a wonderful life. I treasure my new friends - mainly Carla and Liza. What a difference they have made in my life. Maybe I'm being unreasonable, wanting both the old and the new. Maybe I needed to create this space for the new. Maybe that's the way it has to be, for it to work.
Speaking of work, I love my job, but there are problems connected with it. The drive is sometimes debilitating and I don't have any energy for doing anything at all once I get home. The saving grace is that the stickers on the Prius allow me to use the commuter lane, but the stickers expire in January 2011 and then what do I do. Even the stickers sometimes don't help - last Friday it took me an hour and a half to get home when normally it should take 25 minutes. It was raining quite heavily, there was flooding, and all the roads were backed up. It's going to be a rough, wet winter.
The solution is for me to first find additional work here in my neighborhood to supplement my income. As the year progresses, I can figure out what to do with my current job. I'd like to continue there as I like the people and the work, but maybe I could reduce my hours going only two days a week and at easier commute times. However, I can't reduce my hours until I find other work to supplement it. Thus my dilemma. Any suggestions? My talents are bookkeeping, administrative aide, and iTunes and iPod technical support. Not to mention comic relief!
The last subject I would like to comment on is the happiness gene. I am glad to report that I think I have one. No matter what is happening in my life, no matter how upset or distraught I might be, I can always shift immediately into happiness and delight. All it takes is a song, a movie, a play, a book, a friend, a sunset, an apple martini, a good meal, a molasses cookie baked by Carla, a childhood memory shared with my sister, a tv program, a joke in an email, a phone call, a photo of one of my grandchildren, dim sum with family, an impromptu dinner at Liza's, Edwin suddenly joining me and Carla to watch the Golden Globes, an evening with friends......I could go on and on, but the point is that it doesn't take very much to lift me out the doldrums and to have me feel joy and delight. Therefore, I have concluded that I definitely have what I call the happiness gene. And that is what got me through the last few years and enables me to still be here. I feel very lucky to have it. And I will end on that note.
Monday, November 30, 2009
Some fun tidbits
I was a bit serious in yesterday's post, so I thought I'd be a little lighter in this one. As you can see from the photo I posted, Trish and I had some girlie fun last weekend. We first had a pedicure (Trish's treat), which was nice and luxurious. Trish was a little concerned about my sticking my feet in hot water (memories of the famous hot tub incident), but I was careful to tell the pedicurist (is that a word?) to not make it too hot and everything was fine. I especially enjoyed the foot and leg massage. It reminded me that I'm supposed to be massaging my feet every night to improve the circulation. I'm going to try to do that. Trish sent me home with a tube of foot massage cream to help me remember.
Then we went back home and treated ourselves to a mud pack facial. That was fun! We applied the mud with a paint brush - it reminded me of watercoloring - let it dry until it became white and caked, then washed it off with warm water, leaving us with baby smooth skin. What fun.
Trish has now formally and completely moved into Stan's townhouse in El Sobrante. It's further out than Oakland and a longer drive, so I opted to take public transportation. Carla dropped me off at the train station here in Redwood City. I then took the train to Millbrae, where I transferred to BART (our version of an underground) which took me to Oakland where Trish picked me up. It was easy and painless, as the BART car was right across the track from the train and was ready and waiting for me, and only took about an hour.
The trip back, however, was another story. Trish took me to a BART station in Oakland that was bigger and therefore sure to have working elevators (I don't like to take an escalator when I have a suitcase and a cane). Unfortunately, this station had two lower levels, so you had to take two separate elevators, and of course the two elevators were two blocks apart from each other. By the time I got to the relevant track, I was exhausted, plus by taking the second elevator to the lower level I seemed to have bypassed the turnstile where you use your ticket. That unfortunately meant that when I tried to exit the BART car in Millbrae, I couldn't. The turnstile wouldn't accept my ticket because I hadn't used it at the start of the journey and thus the system couldn't figure out what the fare was (I have a senior/disabled card that's 62.5% discounted). I ended up having to walk all the way to the end of the platform where someone let me exit through an official gate. Then I discovered that the track for the southbound trains were on the other side, making it necessary to take an elevator up a level, cross over the tracks, then take another elevator back down to the platform. By the time I did this, dragging my suitcase, my cane, and my legs, I'd missed my train. And the trains only run once an hour. Oy.
The adventure continued in Redwood City where I had to decide whether to take a rogue yellow cab that was allegedly illegal because it was waiting right where you get off the train, or a suspicious white limousine that had tiny tiny lettering saying "American Cab" whose driver was jumping up and down shouting that I shouldn't take the yellow "illegal" cab and should take his. I spent about a minute trying to decide who was the bigger liar and finally opted for the white limo. All's well that ends well. I made it home in one piece. The entire journey took 3 hours. But it's still better than driving in the East Bay which I HATE.
My "cancer class" ended two weeks ago, but we all bonded and have decided to continue to go on the same days at the same time. One of us is also having a holiday party in a few weeks, saying that "since we all had such a good time in class, I'm sure we'll have an equally good time at a party." Everyone is very supportive of everyone else, and it almost feels like another village. I'm not lifting as much weight as I did before, however, due to some pains in my shoulder and those bruised ribs, but I plan on getting back up there soon. I'll let you know when I do.
However, I still miss the people from my exercise class at Canada College and so will continue to drop in there now and again. After Thanksgiving dinner on Thursday (which was a wonderful, fun occasion at Stan's sister's house), I went for a vigorous walk with my sister and Stan's two sisters and was surprised and thrilled at how well I did. It gives me hope for being able to do the walk in class. Of course, I always do better at night - I've begun to think I must have some Vampire blood in me. After all, my ancestors do come from someplace in Russia. Weren't there vampires there as well?
Speaking of Stan's family, they have welcomed me into their fold and accepted me as part of the family, along with Trish. So that's another family I can count on. The riches just keep increasing!
That's all, folks.
Then we went back home and treated ourselves to a mud pack facial. That was fun! We applied the mud with a paint brush - it reminded me of watercoloring - let it dry until it became white and caked, then washed it off with warm water, leaving us with baby smooth skin. What fun.
Trish has now formally and completely moved into Stan's townhouse in El Sobrante. It's further out than Oakland and a longer drive, so I opted to take public transportation. Carla dropped me off at the train station here in Redwood City. I then took the train to Millbrae, where I transferred to BART (our version of an underground) which took me to Oakland where Trish picked me up. It was easy and painless, as the BART car was right across the track from the train and was ready and waiting for me, and only took about an hour.
The trip back, however, was another story. Trish took me to a BART station in Oakland that was bigger and therefore sure to have working elevators (I don't like to take an escalator when I have a suitcase and a cane). Unfortunately, this station had two lower levels, so you had to take two separate elevators, and of course the two elevators were two blocks apart from each other. By the time I got to the relevant track, I was exhausted, plus by taking the second elevator to the lower level I seemed to have bypassed the turnstile where you use your ticket. That unfortunately meant that when I tried to exit the BART car in Millbrae, I couldn't. The turnstile wouldn't accept my ticket because I hadn't used it at the start of the journey and thus the system couldn't figure out what the fare was (I have a senior/disabled card that's 62.5% discounted). I ended up having to walk all the way to the end of the platform where someone let me exit through an official gate. Then I discovered that the track for the southbound trains were on the other side, making it necessary to take an elevator up a level, cross over the tracks, then take another elevator back down to the platform. By the time I did this, dragging my suitcase, my cane, and my legs, I'd missed my train. And the trains only run once an hour. Oy.
The adventure continued in Redwood City where I had to decide whether to take a rogue yellow cab that was allegedly illegal because it was waiting right where you get off the train, or a suspicious white limousine that had tiny tiny lettering saying "American Cab" whose driver was jumping up and down shouting that I shouldn't take the yellow "illegal" cab and should take his. I spent about a minute trying to decide who was the bigger liar and finally opted for the white limo. All's well that ends well. I made it home in one piece. The entire journey took 3 hours. But it's still better than driving in the East Bay which I HATE.
My "cancer class" ended two weeks ago, but we all bonded and have decided to continue to go on the same days at the same time. One of us is also having a holiday party in a few weeks, saying that "since we all had such a good time in class, I'm sure we'll have an equally good time at a party." Everyone is very supportive of everyone else, and it almost feels like another village. I'm not lifting as much weight as I did before, however, due to some pains in my shoulder and those bruised ribs, but I plan on getting back up there soon. I'll let you know when I do.
However, I still miss the people from my exercise class at Canada College and so will continue to drop in there now and again. After Thanksgiving dinner on Thursday (which was a wonderful, fun occasion at Stan's sister's house), I went for a vigorous walk with my sister and Stan's two sisters and was surprised and thrilled at how well I did. It gives me hope for being able to do the walk in class. Of course, I always do better at night - I've begun to think I must have some Vampire blood in me. After all, my ancestors do come from someplace in Russia. Weren't there vampires there as well?
Speaking of Stan's family, they have welcomed me into their fold and accepted me as part of the family, along with Trish. So that's another family I can count on. The riches just keep increasing!
That's all, folks.
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