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!

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.