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.