Another New Chapter Begins

A lot has happened since I last wrote.  On June 29, 2013 I decided it was time to move.  The carriage house was built in 1908.  The house has been shifting and the staircase has been getting harder to climb.  Even my healthy friends have noticed it, and were huffing and puffing when they reached my apartment.  I saw the writing on the wall and decided it was better to move while I could still manage those stairs.  That night I sent out an email to everyone I knew in the area and told them what I was looking for - ground floor, a cottage or in-law like I had in the carriage house, lots of light, off street parking, access to laundry, outside access, HEAT.  A lot of friends responded right away, surprised I was leaving the carriage house and offering to help, including my good friend Scott, who went immediately into action.  He forwarded my email to several friends and posted it on his Facebook page.  Within a day or two I received an email from one of his friends who had sent it to her friend Steve - she gave me his telephone number and suggested I call him.  I did and I knew immediately this was it.  He had a cottage behind his house and the tenant of 20 years had recently moved out.  Steve had been spending the last 4 months repainting, putting in new carpets, rewiring, etc.  It sounded exactly like what I was looking for, but he wasn't ready to show it yet.  Two weeks went by while I waited for him to be ready to show it to me.  We had several phone conversations and discovered we had a lot in common - jazz, travel, writing, etc.  I liked him right away.  In the meantime, I looked at some other apartments, but I knew in my heart this was the one for me.  Finally, I went to see it on August 15th.  I parked in the 2 car carport (space for 2 cars! - all mine), walked through the patio yard (all mine!) into the large living room with 2 huge windows, almost floor to ceiling, letting in lots of light and looking out on trees.  It was love at first sight.  Everything was brand new - paint, carpets, cabinets in the kitchen, tile floor in the kitchen, tile in the bathroom.  It sparkled.  And there were windows and light and trees everywhere.  There was even a laundry room off the kitchen.

The only hesitation I had was the size - it seemed a lot smaller than the carriage house.  After I had walked through the apartment (Gael, Steve's significant other, insists I call it a house - actually, she says I should refer to it as MY house), Gael and Steve and I sat in the backyard and schmoozed and chatted for awhile.  The weather was perfect - I could have stayed there for hours.  I felt I should come see it with another pair of eyes and my sister was coming to stay with me for a few days on the 17th, so I asked them if I could give them my answer then.  They said yes, with Gael adding "oh I hope you take it, I want you to live here."  That made me feel great - I certainly hadn't felt that way at the carriage house for a long time.  I took a lot of photos and sent them to My Village.  They bombarded me with phone calls and emails urging me to take it now, don't wait, call him now!  So I called Steve the next morning and said yes.  He was so sweet - he said Gael would be thrilled.

My friends Francine and Linda came down from San Francisco to help me figure out what furniture I could keep and where to place it.  We met at the carriage house, they took another look at my furniture (all of which I had measured) and then we went to Steve's (now mine).  Linda drew a floor plan and then she and Francine went around figuring things out, marking it on the floor plan.  It really helped to know what furniture I was going to be able to keep.  Then we went back to Carla's and had celebratory apple martinis.

My sister Trish has been a Godsend - I never could have done this without her.  I get tired too easily.  It was different in 2008 - I had energy and strong legs then.  She has been helping me since the day she came to see it with me.  She helped me get rid of about half of my clothing, half of my dishes, most of my books, some of my furniture.  I either sold it on CraigsList or a neighborhood site, sold it in an estate sale, or gave it away.  It was hard and emotional for me - there were a lot of memories involved - but she kept reminding me that I was moving to a smaller place and that I had a lot of things I didn't really need, and she was right.  She has been coming every week, staying 2 nights, first helping organize me and get ready for the move, and now she's been coming helping me unpack, doing all the heavy lifting and physical labor.  She's been amazing.  She has put her life on hold for me, not going to the gym or classes etc.  I can never repay her or thank her enough.  Her "sweetie" Stan has also been terrific.  I had Carla's place cleaned professionally on the 17th and Stan came and removed picture hooks, filled in the holes, painted, etc., helped carry things down, made several trips to Savers (a version of Good Will) for me.  He stayed overnight with Trish at Carla's when we were getting ready for the move, and again here.  He's helping hang things, bolt things to the wall, set up my new tv.  Oh I almost forgot.  A good friend gave me a housewarming gift of a brand new 50 inch Panasonic smart tv.  It's gorgeous.  I never thought I would have anything like that.  My friend just told me to go get something I like and then he'd send me a check.  My friends Patti and Ron, who have Smart tv's of their own, took me to Costco in their van, helped me pick one out and brought it here for me.  Of course, I am now obsessed with it and am constantly learning new features to the point where I'm teaching friends who have had one for a couple of years.

I had great movers - I found them through a neighbor who had moved recently.  I've had help from others too.  My friend Meri drove up from Soquel to be with me on the Wednesday they did the packing, and then helped me bring some stuff here afterwards.  Francine and Linda drove down again from SF on moving day and waited at the new house so they could tell the movers where to put the furniture.  I drove over ahead of the movers with the boxes from the refrigerator and freezer and they put it away for me.  It was really helpful to have them here; otherwise I would have been overwhelmed trying to direct the movers.  Again, we 3 ended the day with apple martinis in the garden.

Moving Day was the 15th - Trish and Stan came on the 16th to help me unpack.  Comcast came that day to set up cable, voice and internet.  Stan was invaluable in unpacking and setting up the new tv before they came and then making sure everything got done properly.  They stayed overnight and helped me clear out of Carla's whatever the movers had left behind.

As I said, Trish has been coming 3 days a week to help me unpack and organize things.  Thanks to her, I'm almost unpacked.  Francine and Linda came down again on Thursday and did some more unpacking and decorating - they hung the framed handkerchiefs striptease that had someone had made for my mother back in the 50's and that has hung everywhere I have lived ever since - and they set up my bar - so I'm ready to entertain!

I am so lucky to have My Village and so many friends helping me.  I love my new place - more even than I loved the carriage house.  I also love this neighborhood.  I joined the neighborhood site here and people are constantly welcoming me on it.  I've also met a lot of neighbors through selling things and giving them away (yes, I am still getting rid of things - I think it will be an ongoing process for the rest of my life!).  They come here and stay and chat for a half hour, give me recommendations for restaurants, etc.  But the best are Steve and Gael.  They are wonderful.  I had the music on loud one evening and felt bad about it, so I emailed Steve the next morning and apologized, asking that he please let me know if the music is ever too loud.  He wrote back saying nonsense, this is my house, and I am to do whatever I please.  Gael brought over some irises yesterday as a housewarming gift.  They are wonderful.

I'm sorry this is so long, but I am very excited about this new stage of my life and wanted to share it.  I think it was Brenda who figured out this is the 9th or 10th chapter in my life.  As long as each chapter is better than the last, then I'm ok with it.  Bring 'em on.

I'm in a new town, in a new house, and couldn't be happier.  Come visit me!

Great news!

Since I last wrote, there have been many many phone calls by me to Biogen, Curascript (a specialty pharmacy for chronic illnesses) and MS ActiveSource for financial aid for drugs.  I was at first told it would cost me $16,000 a month.  Then 2 weeks ago I was told by Curascript that I qualified for only $958 a month co-pay (ONLY?).  MS ActiveSource had told me in April that I did not qualify for assistance because I was enrolled in Medicare.  Then in May my Medicare pharmacy approved the drug, but when I called MS ActiveSource on Monday to see what was happening, I was told I still wouldn't qualify unless: 1) I was in the donut hole, or 2) I was in the catastrophic category and/or had met my deductible.  I had no idea about this because I get the 2 drugs I currently take for free.  The woman I spoke to said she would check with my drug plan and call me back on Tuesday, which she did not do.

Just now I received a call from Curascript.  First they gave me the $958/month figure again.  I AGAIN told them I couldn't afford that.  She said let me check the other case file we have for you.  Two minutes later she said your insurance covers 25% of the monthly co-pay and MS ActiveSource covers the rest, leaving you with just a $10 co-pay.

Hooray!!!!!!

I receive my first month supply this Friday.  I won't be starting on it until I return from my trip back East for my 50th high school reunion.

Hooray!!!

This is not a cure nor will it necessarily help with my symptoms (although it might), but it is supposed to help slow down the progression.  And, as an added bonus, help with the psoriasis, which is what the drug has been used for the last 10 years in Germany.

Hooray!!!!!

There is no other news to report.  I have been working hard in preparation for our reunion, which takes place in 10 days - yikes.  We've been working on this for 2 years so it's hard to believe it is finally here. I will have lots to report after I return.  In the meantime, I'm going to go do a little jig in celebration of the good news.

Oh and one more thing....

That sentence always makes me think of Columbo....

An hour after I published the last post, I received a phone call from a friend who also has MS.  She pointed out to me that anyone who is enrolled in Medicare is not eligible for the $10 co-pay for the new drug, Tecfidera.  I called the company this morning who confirmed this.  They do have me in their system (I registered at their website) and are waiting for the request for a prescription from my doctor, at  which point they will investigate other financial assistance resources.  So - at this point, after waiting  1 1/2 years for the drug to be approved, I do not yet know whether I will even be able to afford to take it. Don't you just love the health care in this country?

On a brighter note, I forgot to give an update on the heating situation chez Carla.  This is the first winter since 2008 that I have not been cold in the carriage house.  We did get a new thermostat and Carla does turn it on in the mornings at 7 (except for when she sleeps in), and again at 5 PM.  However, the operative word is "turns on".  We have given up trying to get her to just let the thermostat do its thing.  So, between 9 AM and 5 PM, and then again between 9 PM and 7 AM, it gets cold.  HOWEVER, I was and am not cold thanks to my village.  I already had 3 old electric heaters.  Now, in addition to those,  I have a brand new electric heater in my living room which somehow manages to heat the entire apartment, an electric mattress pad AND an electric throw on the couch, all gifts from my village.  These electric heating devices in combination with the hours the thermostat is allowed to do its thing have managed  to keep my apartment nice and toasty.  The only problem is when I go away and she doesn't turn the thermostat on at all, but it doesn't take long to heat it up once I turn on all my devices.

A Year Later.....

I have some exciting news.  The drug I've been waiting for - formerly called Biogen BG-12 and now called tecfidera - has just been approved by the FDA - finally!  It's been called a blockbuster drug for MS.  I submitted a form to my doctor authorizing him to prescribe it for me.  The next step will be to apply for financial assistance from Biogen.  This drug will cost $54,000 a year, but with financial assistance it will only cost $10 month.  The perks of having no money - the silver lining in the cloud.  It has a success rate of 50%, versus the 30% success rate of the current drugs, and fewer and milder side effects.  The known side effects are flushing, nausea, diarrhea - but hopefully only for 3 months.  I'm going to NY for my 50th high school reunion at the end of May, so I've decided to wait until my return before starting on the drug.   The last thing I need is diarrhea while on a long flight or at my reunion!   Tecfidera, under a different name, has been used successfully for 10 years in Germany for psoriasis.  I have that as well (of course I do - why wouldn't I?) and hopefully it will help me with that too.  I just have it on my scalp, but it has caused hair thinning and hair loss, so I would welcome any help I can get with that.  I never knew psoriasis was an auto immune disease.  It turns out I have 4 of those!

I just checked my blog to see if I had written about the fall down the stairs in October and I see that I haven't posted anything for a year!  Wow.  I obviously cannot cover everything that has happened in that time period.  Briefly, I was following someone up my stairs who suddenly lost their balance halfway up and fell backwards, into me, causing us both to fly through the air and land hard on the tile floor in the entryway.  I was in a lot of pain for about two weeks, but the lasting effect has been to my balance.   I sometimes joke that I risk being arrested for WUI - walking under the influence.  I am now using the cane full-time - not so much for assistance with walking as for with balance.  Other than that, I'm in a good place right now with the MS.  The fatigue, which is a huge problem for most people with MS, is under control - I don't take naps anymore and I often stay up until midnight - and I only sporadically have problems with foot drop or spasticity.

I am still enjoying my business helping seniors with their computers and electronics.  I have a few regular clients with standing weekly appointments, I still teach twice a month at the assisted/independent facility where I also have private clients, and every now and then I get a new client through referrals.  I'm not covering my monthly bills yet, but I also haven't done any marketing yet.  A friend is going to design a website for me and also a brochure and then I will start advertising.

I'm enjoying working on the planning of my 50th reunion.  I have already made a lot of new friends through that, some of whom I only know through email but some also whom I've met in person.  

I am also still loving life here in the carriage house, but I know I will eventually have to move.  it will either be because the stairs will become too difficult OR because Carla sells the house, which she is beginning to talk about.  She's 76 now and it's becoming difficult for her to maintain, especially the gardening.  I had really hoped to spend the rest of my life here, but I'm remaining positive, reminding myself how I felt in 2008 when faced with the prospect of moving and fearing I might end up in a depressing cookie cutter apartment.  Everything always works out.

I'm sure I've left out a lot of news - after all, it has been a year - but I think I've hit the highlights.  I look forward to hearing everyone else's news.