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!

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.

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:  

LDN-Newbies-Discussion-Group

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!
      

Haydn And Hell Week

Tomorrow begins for me what is known in the arts community as 'Hell Week'.  If you've ever been in a performance in college or community theater you know what I'm talking about. If you haven't, Hell Week is the week before the scheduled shows when you rehearse on Monday, Tuesday, Wednesday, Thursday and then perform Friday, Saturday & Sunday.  Aptly named, no?   For singers this is truly hell because you want to rehearse but also preserve your voice for performance.  For theater, this is more of a technical time to get the stage work and technical work in sync and polish up dance numbers, costuming, and curtain call staging.

Even before I had MS I dreaded hell week.  Everyone does.  When I was doing musical theater it was long days, and boring down time but at least you got to sit down when you were off stage.  But a choral singer is always on the stage and rehearsals start and stop for various adjustments to balance the orchestra, logistics of getting on and off stage, etc.  So the rehearsals actually last a lot longer than an actual performance.  If the conductor remembers, he'll seat us while working with the orchestra, but often he's too occupied to think of that and we would not seat ourselves without his direction - it simply isn't done.  Thus, the chorus is standing for most of the rehearsal.  By the time you get to that last performance you are just ready to collapse and all the audience energy coming towards the stage like a freight train is needed to bolster you up.  

How do I deal with this?  Well, for the first 4 years after my diagnosis I was determined to do exactly what the rest of the chorus did - and as I always did.  But last year I had to make a decision.  If I was going to continue as a member of this chorus I was going to have to play the MS Card and sit as much as I could until the actual performance.  To get through hell week I'd need to conserve my energy to be able to stand when it counted.  

This was very depressing for me.  At the time I wasn't sure why this was so hard.  I'd already made many changes in my life to accommodate my MS and while not all of those were easy, I seemed to be having a rough time with this one.  I think though that I have now figured it out.

Music has always been such an important part of my life that even the small change of sitting in a rehearsal when others were standing signaled the beginning of the end.  It brought home the fact that I have a progressive illness which will not get better - the best I can hope for is to slow down that progression.  Yes, there are days when I'm more hopeful and yes, my energy is better since my angioplasty, and yes, maybe when I start on the next drug in this never ending parade of drugs I'll have even more stamina, and maybe,  maybe, maybe. . .  But for now, for this week, this Hell Week, MS shows up and smacks me in the face, very publicly, and announces that some day soon I won't be able to participate in the activity that I love to do more than anything else in the world: making wonderful, quality ensemble music with people way more talented than me.   

The first program of the season is Haydn's Creation.  Luckily for me, the chorus will be seated when the soloists are singing and we'll stand only for our sections of the score.  I can also place a chair in front of me for security and balance if I need to grab it while standing.  But the next performance will be the Verdi Requiem and the chorus has a lot more to do.  Will they have us stand the whole time?  If so, will I be able to do that?  Should I accept the offer to sit in performance while others stand?  Very kind of the conductor to offer but I'm keenly aware that it looks unprofessional and I hate that.

So this thing called MS has hit me hard this week.  One month after the angio and I'd really hoped not to have to worry about this for the concert.  Plus, we're performing in some new venues and I don't know if there will be stairs to negotiate.  But as my friend loves to say, "It is what it is."  I know that and I accept it but I sure as hell don't have to like it.  And right about now I really hate it.   But I also know that once the lights go down and the conductor raises his baton, it will all fall away and the music will transport me as it always does.  Thank you Papa Haydn! ================================================================================================================

Post Concert Update:  Hell week and three fabulous performances have come and gone and I'm still in one piece!  There was only one challenge which came to light at Thursday's dress rehearsal at Trinity Cathedral. 

The chorus administrator has placed me smack dab in the center of the first row. Normally not a problem for me as this is my usual spot - but this time the chorus was up on 7 tiers of risers and the first row wasn't on the floor but on the first tier so we were above the orchestra.  This meant that there was no space to put my 'stability' chair or even to use my black walker.

Second problem was that the rented chairs that came with the risers were pretty flimsy plastic jobs and I could not stand up from those chairs, which were sort of slanted back.  They were not good for singers and everyone complained about them.  When I told them I couldn't stand they graciously said, "No problem, just sing seated."

Well, very nice of them but the soloists were just to my right and I'd be center stage, sitting while everyone was standing; in my mind it would be very obvious and distracting to an audience.  I just wasn't comfortable with that.  I asked to be moved to the end, but of course, then I'd be out of my section so they said no.  I was assured that the next two performances would not be a problem for me since those venues had a different stage set-up.  

I was ready to opt out of this performance and help at the box office when I had another idea: I'd ask to be switched with the alto at the end of my section (next to the tenors). This would put me more to the left side of the stage away from the sight line when the audience was looking at the soloists.  I still needed permission - we cannot move ourselves - but Carole, our administrator, said "sure", and so a little creative thinking had me seated for that entire concert but without feeling as self-conscious as I would have had I been center stage. 

So instead of being depressed that I had to sit, I felt good that I'd found a way to still do the performance even though it marked a new 'first' for me.  I'm coming to terms with my abilities and disabilities and I guess it's an ongoing processes.  Welcome to the wonderful world of MS.

Retired, Tired and Disgusted

So I have good news and bad news.   The good news is:  I'm officially retired, effective yesterday!  It's kind of a moot point since I haven't been to work since October 1st.  I didn't feel well enough to go back after the angioplasty and I've used up all my FMLA leave.  No sick or vacation time left, and without FMLA leave my division would terminate me for being absent without leave, (oh yes, they sent me a certified letter to let me know they would not extend FMLA and I had to return to work or be terminated - such compassion.)  So rather than leave under those circumstances, I resigned and put in my retirement papers. 

Then I had a birthday.  This falls under the bad news heading.  I celebrated by spending the day filling out the on line application for Social Security and SSDI (Social Security Disability).   I have been dreading the process and my fears were well founded.   It took me 5 hours to do the on line forms.  They wanted information going back 15 years!  Don't we all have that at our fingertips?  By the time I was done I went to sleep!  (But I did celebrate the next night with a great dinner with friends and a Sunday brunch the next day.)

I also applied for LTD (Long Term Disability) through the insurance I have.  Waiting to see how that will go.   Completely different set of paperwork - grrrr! (Bad news)

Monday I planned to get out and do errands and then go to rehearsal. Nope.  Spent the day sticking close to the bathroom as bowel problems decided to flair up.  Drank a lot of water, did laundry, and took Imodium - isn't MS fun? (More bad news for those keeping score.)

On Tuesday, November 2nd, I worked at the polls for the mid term elections.  We had a very good turnout but I'm just disgusted with the results around the country and especially in Florida.  Floridians elected a thief, crook and liar as their governor.  I'm sorry but I can't comprehend this.  Too disgusted to even talk about it.  We are doomed.  (Very very bad news)

Then on Wednesday I get a letter from SSDI asking me to contact the local office to "discuss my earnings record."  Huh?  They have my earnings record - they sent it to me!  But I tried to call all day and of course, could not get through.   I finally call the 800 general number, which I was advised by many NOT to do, but there was no choice.  The woman I spoke to said they want documentation of my last 10 years of earnings.  How bizarre is that?  First, why not say that in the letter?  And second, they have my earnings records as reported on my W-2 forms every year.  But OK, I dug out all my tax returns and pulled off the W-2s which I will take to get photocopied and then mail in to the local office.  (Frustrating but not too bad.)

Thursday was a fun day.  In the morning, the owner of the wheelchair repair store came by to trade me two scooters for two batteries for the power chair my neighbor Bob gave me.  That actually went well and now I need to learn how to use the chair without killing myself in the process.  The joystick controls are nothing like my scooter.  I'll need a lot of practice.  (Used it to take out the garbage tonight and went v-e-r-y  s-l-o-w-l-y to make sure I didn't topple down the stairwell!)   Then I was off to Boca to meet my friend and her Mom for lunch.  But in my haste, I didn't notice the radar trap set up on the road leading to the highway and bam - they got me.   Big big speeding ticket.  But the cop was nice about it and truth is, I was speeding.  I'll try and get it over to the Ticket Clinic and pay them to get it dismissed.  Welcome to Florida.  But lunch was lovely so that was a draw.

Now it's Friday and all my good intentions for the day, (go to the gym, do some RFBD reading, get my nails done, go to the Ticket Clinic, get those photocopies made) went out the window when my body decided nuh uh - you're not going anywhere today.  The overwhelming fatigue hit me like a ton of bricks.  Spent the day watching TV and napping.  At 6:00 my 82 year old neighbor rang my bell to bring me dinner she had cooked!  How did she know I really needed that today?  And how depressing that I had to have an 82 year old take care of me?  It's 10:30 pm now and I finally feel better.  Well, as Scarlett said, tomorrow is another day.  (Score:  Good news 1 - bad news 6)

So my retirement days have not begun well, but I guess not struggling to get to work on time each day is the big bonus.  I'm now officially done complaining and will try and remember to count my blessings and be grateful and positive.  I'll really try but I may slip again;   I'm still a work in progress.

 

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HOW THEY DRAINED MY BRAIN IN CLEARWATER

My angioplasty was done last Thursday in Clearwater, Florida at a wonderful clinic called AI3 - Advanced Imaging and Interventional Institute.  This place is truly state-of-the-art.
  
Dr. Bulent Arslen did the procedure along with Dr. Jerry Niedswiecki.  Both are very experienced interventional radiologists and I was treated so well there I felt like Liz Taylor going to a private hospital.   

                                                    
At my consultation the previous day I was told the doppler sonogram showed two areas of narrowing in my left and right jugular veins. But until a venogram is done, they cannot tell if there are others. I was most concerned about the azygous vein which cannot be seen on imaging as it is a twisty vein that lies under the heart area. Some doctors correlate blockage in that area with lesions on the spine, which is where most of mine are and which impact my mobility. 

The procedure itself is not difficult for the patient.  You are given conscious sedation (Versed and Fentynol - I asked for more but they said, "good try") and you are a bit groggy but awake since you need to communicate with the doctor.  A local anesthetic is given in the groin area and a very small incision is made (didn't feel a thing) where a wire is threaded into the vein and up until it reaches the blockage or narrowed area. This is all viewed on three large screens positioned on the side.  (I could see the screens sometimes when my head was turned that way.)  I didn't really feel the wire moving until they reached a blockage and started to slowly inflate the balloon.  When they inflate it you feel pressure which increases until it gets painful, at which point you tell them it hurts.  The doctor then determines if he can safely inflate further or if a different size balloon is needed.  Dr. Arslan and Dr. Jerry talked to me the whole time and I knew what was going on.  Sometimes you needed to breathe in and hold it while they took images which will later be made into a video (not coming soon to a theater near you).   I asked for a copy - my screen debut!

I don't have the written report yet so I can't tell you what size balloon was used and what pressure - but I can tell you that twice the balloon popped inside my vein!  Yikes - that was a scary sound!  Dr. Arlsan said it was because he used a smaller balloon and inflated it to the max because he wanted to be conservative and not injure the vein.  He removed it and changed to a larger balloon which worked better.
So they found and cleared three blockages of about 50-60% each.  One in each jugular and one in the azygous.  I was surprised that azygous had only one but Dr. A said the number of blockages does not correlate with disability or results - their goal is to clear everything so your blood can move freely and at the rate it's supposed to.

 After the procedure they wheel you back to the prep/recovery area and you must lie flat for at least two hours.  Zack stayed with me the entire time and was actually very sweet, asking if my feet were cold and being uncharacteristically solicitous.  (That didn't last long though - as soon as we left he was his old self.  Here he is in the car turning to make some smart comment.)

So after the two hours I was allowed to sit up and be pampered with offers of a selection of juices and snacks.  After one more hour I was told I could get up and use the restroom and if I wanted to change into street clothes I could.  A nurse helped me to the restroom and I kept trying to determine if I felt different.  I had to conclude - not really.  But, I just had anesthesia and a surgical procedure so I said to myself, be patient.  But I have to say I was a bit jealous of the Canadian gal in the next bed who came in with pain and purple feet and left without pain and beautiiful pink feet.  Her results were miraculous - I saw it with my own eyes.
 
Dr. Arlslan came by with a prescription for Plavix and after-care instructions and gave me his card with his cell phone number - how many doctors do that?!   I said goodbye to the wonderful staff and off we went to the hotel where I was instructed to lie down for the rest of the day.  I did.  I was exhausted physically and mentally.   When I woke up I did notice one teeny tiny improvement but I'd have to say it was not significant.  It did tell me however that some process was going on in my body and again, I tried to stay positive and be patient. Slept more and slept well - that was new (but maybe the anesthesia?).

The next day I called Dr. Arslan to report that I did not have any problems at the incision site and we had a nice chat about a lot of other stuff and I was cleared to leave but not drive.  Zack had planned to drive us back to Fort Lauderdale so that was fine and after breakfast, off we went.  Bye Bye, Tampa. See you again for my follow up in January.

It's one week post-procedure as I write this and I'm sorry to report that I have not noticed any significant improvements. The one small change I referred to has maintained which is good, but my mobility is the same.  My fatigue seems a bit better but that may be because I'm not at work and not doing all that much.  Heat sensitivity hasn't changed; when the weather got hotter and more humid yesterday my legs were like rubber.  Bladder issues are still there.  Multiple friends have commented that my overall color is better and that I look really good. (Didn't know it was bad before but one person told me I looked gray.)

So was it worth it?  Absolutely! If I didn't give myself this opportunity I would always wonder if it would have made a difference.  And many people report very slow improvements so I continue to be positive and look for signs. I was inspired to begin yet another diet and hope I have the fortitude to lose enough weight to impact my health.  I was inspired to begin a project that I hope will help a lot of other people.  I was inspired by meeting two other MS patients who had the angioplasty done by Dr. Arslan and who will join me in this project.  I was inspired by Dr. Arslan and Dr. Jerry who agreed to help us.  I was inspired enough to apply for LTD at my job and will now devote my energies to helping others obtain the medical help they want and need but can't afford.  

My own improvements may or may not yet come.  But I believe in the theory of CCSVI and MS and I look forward to my follow up scans.  By January my condition may be change, but for better or worse I'm in this fight for myself and for everyone who wants and needs this procedure.  Watch this space for more news about my High Hopes project.