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.
Monday, May 31, 2010
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.
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