Thursday, December 30, 2010

A Mini-Rant as we leave 2010: Please, just do your job!

Is there anything more frustrating than dealing with people who can't (or won't) do their jobs?  We see this all the time and it's become so pervasive that many of us have come to expect poor or incompetent treatment from salespersons, service people, bureaucrats, government officials, et. al.  It's a sad state of affairs, I tell you.  But I don't expect that attitude from my treating physicians.  The last two months have been so strange in dealing with my neurologist and his staff that sadly, I feel it's time to make a change. 

My first clue:  I had a follow up appointment in November to discuss treatment options following my venoplasty.  I was excited to show Dr. S. the small improvements I had.  I told him I had applied for SSDI back in October and asked if he had sent the records they requested.  He leafed through the chart and said, no, he didn't see a request.  Strange I thought  - I'd have to call them to follow up.  At least I had sent in whatever MRI records I had which contained my diagnosis.  I later called and they said they sent two requests.  I suggested they make another request by fax since that office seems to respond to faxes... I hoped.

I'm getting a bit annoyed now. 
Clue two:  His plan was for me to go on Tysabri, but after a lot of research and thinking, I decided that was not the route I wanted to take.  Too much risk for a possible benefit.   The other drug available to me was the newest flavor on the block, Gilenya (generic: fingolomid).  This oral medication was unbelievably expensive and the list of side effects would make anyone run for cover.  Even Dr. S agreed it was too new and too scary to try.  So as a person with SPMS, there were no other 'approved' options left for me.   I wanted to try LDN - Low Dose Naltrexone - which a lot of MS patients swear by.  It is a very safe option, and if it didn't help, well, it couldn't hurt.  Dr. S. said he didn't know much about it but was willing to prescribe it after he got more information.  I came prepared with written LDN Fact Sheet, and I also said perhaps he could speak with Dr. X, another MD in the practice who was known to prescribe it.  Here's where it got weird:  he asked ME to call Dr. X's office and find out what the dosing should be.  I said, wouldn't it be better if you or your nurse called and got the information.  He said they were too busy (he said it nicer than that but that was the bottom line).   Too weird.  I didn't pursue it - but I did call, and Dr. X's nurse and I had a long discussion about how strange this was.  I was told to call Dr. S. and have him call Dr. X directly, (no shit).   So I did - left 2 messages for his nurse and it's now December 30th and I've yet to hear back from anyone.    (So I ordered the LDN on line and started taking it a month ago, titrating per the fact sheet.  No side effects so far.)

Clue Three:  Last week I get a call from the woman handling my disability claim asking me to go to two independent doctor's appointments before they make a decision.  I questioned why this was necessary since by now didn't they have all my neurologist's records?  No, she said.  They never received them after numerous requests and now I would need to get an independent exam.  Plus she wants me to see a psychologist as well.  Why I asked?  Because you're on an antidepressant.  Oh, I say, but that's only because of the MS medication I used to be on.  She said, that's our policy.   So of course I agree to the exams and then fire off a fax to my doctor asking, begging them to send the records so I don't have to endure this.  No freaking response and so, I had a 45 minute appointment yesterday with an odd doctor in an awful part of town which I can only hope will help my application.  The shrink is scheduled Jan. 10th.

So now I have to find a new doctor and hope the SSDI people actually read and listen to the reports that they do have.   I have no idea who I want to use as my neurologist now... a whole 'nother dilemma.

Next: had to call my old job about a benefit question.  Called twice last week; sent a follow up email, finally called again yesterday and left yet another message.  Geez people - just do your jobs!  Finally got a call back with an answer.  One down.   I'm just fed up and aggravated because if people would just do their jobs the world would work so much better!  OK - rant is over.  On to something positive!

I'd like to leave you with this excellent video of Doctor Salvatore Sclafani who explains CCSVI and the current state of knowledge and research in a very realistic way that anyone can understand.  I love the comparison he makes with vaccines - listen and you'll see what I mean.
       Click here for the Interview wth Dr. Sclafani

I will actually get to meet Dr. Sclafani in January when I'm at the ISET conference in Miami helping at the CCSVI Alliance exhibit booth.  I may even get to meet Dr. Zamboni!  The book I'm working on is coming along and I'm hoping we get it done in time for the March Tampa event. (I'll have to tell you about that in my next post.)  Looking forward to singing with Andrea Bocelli on Valentine's day and to the Verdi Requiem in March with Master Chorale.  Many good things to look forward to in the new year!
No resolutions this year.  Just a promise to myself to do whatever I can to get healthier and to continue promoting education and research about CCSVI.  

My wonderful friends and family, I wish you a happy, healthy, new year filled with learning, loving, music and joy!

Tuesday, December 7, 2010

Frustration - as defined by the Wheelchair Kamikaze

The well known MS blogger Wheelchair Kamikaze has posted one of his very best essays this week.  His blog is so popular because he not only writes beautifully, but also he expresses for many in the MS community what we are feeling but don't know how to put into words.  Marc Stecker writes frankly and honestly about his personal battle with PPMS (primary progressive MS), and his latest post is sort of an addendum to his previous one which dealt with the emotions felt by a person with MS.  When a reader pointed out he'd left out the feeling of frustration, he promptly responded with this incredibly insightful, honest and thoughtful essay.  Please go and read it here:

                            THE FRUSTRATION MACHINE

If you continue and read the comments, my initial response can be found there, but I felt I needed to say more.  Marc got it exactly right, especially the last paragraph which reveals so much about this man whom I truly admire.  His resiliency, courage, optimism and tenacity in the face of overwhelming odds is always amazing to me.  I try to model my response to this frustrating  disease after his.  I don't always succeed but it sure is a worthy goal to aim for.  Thank you Marc for everything you do. You are brave. You are intelligent.  You make a difference.

Thursday, December 2, 2010

Busy, Busy, Busy - Who Said Retirement Would Be Relaxing?

This will be a departure from my usual posts.  I  just thought I'd update everyone on what I've been doing with all my "free" time since, hooray!, retirement.

Well first I had to straighten out all the mistakes that were made when I left work - that was stressful and took a week to fix but it's done.  Then I had to deal with Social Security.  'Nuff said.  No point going over it here - done, finished, all good.

Next: My son has been been on my case for years about exercise.  More specifically, that I don't.   I always was able to come back with, "After working a 10 hour day starting at 5:30 AM I have no energy left to even stand up let alone go to the gym."   Well folks, that won't cut it anymore so I went and joined the local (dare I say it), Senior Center.  Shhh don't tell anyone.   Just so happens they have some great classes there and they are either free or very inexpensive.  So I signed up for Chair Exercise and Chair Yoga and Beginning Tai Chi.   So far I've only gone to the chair exercise class and man, it was freakin' hard!  Who knew?  But I can see that I will clearly benefit from this so that will be one I will continue.  Tai Chi was this morning but I never got there - was too busy as you'll see later.  Chair Yoga starts next week.  And Dec. 14th I start a pastels drawing class.  I must be out of my mind.

Then I started on a new MS medication called LDN (Low Dose Naltraxone).  This is not an "approved" MS drug but my neurologist said it was fine if I wanted to try it since, no surprise, he didn't have any other options for me.  SPMS is not very treatable, even with fancy drugs.  LDN required me to do a lot of research which I did very thoroughly and that took time.  So many people were so kind to help with great info but I had to look in hundreds of places, so I decided to start a Face Book group for 'newbies' to the LDN world.  I invited all my MS friends and some LDN experts I'd met during the research and last night the site went live!  So this all took a lot of my time.  Here's the link:  

Also on Face Book is a group led by my friend Sandra who lives in Rhode Island.  She had the wonderful idea to make a calendar showing the faces and stories of people who were 'Liberated' (i.e. treated with angioplasy for CCSVI) and sell it to raise money for CCSVI research.  So many people responded and wanted to be in the calendar (over 200 from all around the world) that it turned into a book!  Sandra is a graphic artist and will do a great job of designing the book and layout and choosing the photos and stories.  But she needed help with all the detail stuff (getting releases, keeping track of members and their date and place of procedure, finding a printer, distribution, working with the non-profit group who will benefit, checking the page often, etc.).  In short, she needed ME!  Anyone who knows me knows this is what I do well.  So I jumped in and offered to help and I'm loving every minute of it - but it is taking some time for sure.  Not complaining - the finished book will be awesome!  Hope you all will buy one to support the cause.  We're shooting for end of February to get it out.
OK - so we don't go back to Master Chorale rehearsals until January and I didn't want to go that long without singing.  I learned about something called the Virtual Choir, a very cool project on YouTube done by Eric Whitacre, a composer and choral conductor.  Rather than explain the whole thing here, just go and check out the one they made last year - you'll get it. 
Master Chorale at Wold Performing Arts Center
  Lux Aurumque - Virtual Choir - Eric Whitacre   

I submitted my entry for "Sleep" as an alto 1 and when the project is done I'll put a link to the finished video on the blog. Can't wait!  But it took me time to learn the part and record my entry. I'm still not thrilled with it but there's a deadline so in it went.

Tonight I'm going to a fundraiser in West Palm Beach and will speak about my experience with MS and CCSVI from the patient perspective.  This supports the research going on in Buffalo, NY and I'm glad to do this.  I was also asked to be part of a two day event in March which will be really exciting!  A symposium in Tampa at Moffitt Cancer Center (which is where my doctor practices) with a lot of experts and doctors in the field sharing information.  I will be again be speaking from a patient perspective.  And the next day, a fundraising walk with the proceeds going to the CCSVI Alliance.  I'm so honored to have been asked to speak and to be working with this incredible organization.  Thanks go to my good friend and fellow pioneer in Arslan's Army, Nicki W. who got me involved.

Visit their website under my links box
Tomorrow I have a phone conference scheduled with the VP of the CCSVI Alliance to discuss how the book project and this event can partner with each other to raise money for the Alliance.  This is so exciting to me.  This small  project that Sandra started could turn into something huge!  

Who said one person can't make a difference?  I've met so many amazing people along the CCSVI journey and all of them have made a difference on their own, but when we partner to work together, watch out world!

What else have I been up to?  Reading Nora Ephron's fantastic, sad, funny, book, I Remember Nothing.  How did Ms. Ephron know all about my life?  This is a must read for anyone over the age of 50.  You'll laugh, you'll cry, you'll forget where you left the book!

So I did end up talking about MS, Music and Me!  Thank you for spending time in my little corner of cyberspace.  See you next time - when I get some more time.  This retirement stuff is exhausting!