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.

Pre and Post Angioplasy Videos up on YouTube

Just a short message to tell you I made a Pre-Angioplasty video and it's on my Facebook page and on YouTube under Msandisue.  Or just click the link below.   Warning: do not view this early in the AM or if you have an aversion to large butts.  Not recommended for small children.

Here's are the links:  Before they drained my brain   
                                    After they drained my brain

Next week I'll post the "after" video - ( See the After link above ) I hope it shows improvement.  My butt will still be huge but not for long.  I have vowed to change my eating habits and exercise more often. I'm expecting that if I see some improvement with fatigue I'll be able to get out to the gym or at least use the Wii that I've had since last December!)

Wish me luck - the magic day is October 7th - could be my new birthday!

                                       

I'm Still Here

One of my very favorite Stephen Sondheim songs is I'm Still Here from the musical Follies.   I performed in a local community theater production of Follies but I had the very small role of Emily, one of the former Follies girls, and sang one duet but no "big" number.   I was so jealous of the gal who got to sing this song because it is a real showstopper.  Starts off quietly and builds to a roar.  If you don't know it, the song expresses the concept of being a survivor. The character is older, retired, and no longer a working actress.  No matter what she's been through, "plush velvet sometimes, sometimes just pretzels and beer",  she's still kickin'.  Sondheim likes this theme and uses it a lot, more than once in this show and in others.  Being Alive from Company comes to mind off the top of my head but there are more - do some research if you are so moved.  Here's a link to one version of I'm Still Here.  You can also look for Shirley McLaine's rendition from the movie Postcards from the Edge (which is well worth watching for those who like mother-daughter relationship movies, but I digress.)

I'm Still Here - Performed by Carol Burnett with Commentary 

I was in my 30's when I performed in that show, playing someone in their late 60's.  Little did I know that 30 years later I'd be thinking about this song and finding inspiration in it.  

The last two weeks have been pretty rough for me.  Seems like the fatigue has just done me in and consequently, everything else goes downhill.  Walking has become a heroic effort.  Bladder and other unseemly bathroom problems abound.  Haven't really been able to get to work and believe me, I've tried.  I have just one week until my angioplasty and I keep telling myself, "I'm Still Here!"  Need to hold on and get through the drive to Tampa, having lunch with some Facebook friends who had the procedure done already (looking forward to that but still exhausting); get through navigating an unknown airport to pick up Zack, get through spending four days 24/7 with Zack which will hopefully not be too stressful.  (My son and I love each other more than anything but it often would not appear so to people who don't know us!  I'm very grateful that he wants to be with me through this.  It's a sacrifice for him to be away from the ER for 5 days.  But we both are very opinionated and when these opinions don't mesh, watch out!)  But again, I digress.

Carol Burnett describes the song as being about survival, and it is.  But I think it's more about resiliency - similar but not the same.  You can survive an ordeal but be forever horribly changed by it.  Resiliency is the ability to bounce back.  To survive, yes, but also come out better, stronger, determined to keep going.  That is what this song says to me.   I am determined to be resilient.  Right now it's tough, but I have no doubt that in a few weeks things will change. Watch out world - I can't belt a song to save my life, but after my procedure I just may even post my own YouTube Video to let you all know that I'm Still Here!

Good times and bum times, I've seen em all and my dear,I'm still here.
Plush velvet sometimes, Sometimes just pretzels and beer
But I'm here.
I've stuffed the dailies in my shoes,Strummed ukuleles, sung the blues
Seen all my dreams disappear But I'm here.

I've slept in shanties, Guest of the WPA
But I'm here
Danced in my scanties, Three bucks a night was the pay
But I'm here
I've stood on breadlines with the best
Watched while the headlines did the rest
In the Depression, was I depressed? Nowhere near.
I met a big financier And I'm here.

 
I've been through Gandhi, Windsor and Wally's affair
And I'm here
Amos and Andy, Mahjong and platinum hair
And I'm here
I've been through Abie's Irish Rose, Five Dionne Babies,Major Bowes.
Had heebie-jeebies For Beebe's bathysphere
I lived through Brenda Frazier And I'm here.

I've gotten through Herbert and J. Edgar Hoover
Gee, that was fun and a half
When you've been through Herbert and J. Edgar Hoover
Anything else is a laugh.

I've been through Reno
I've been through Beverly Hills And I'm here
Reefers and vino Rest cures, religion, and pills
And I'm here
Been called a pinko commie tool Got through it stinko by my pool
I should have gone to an acting school That seems clear
Still someone said, "She's sincere."
So I'm here.

Black sable one day Next day it goes into hock
But I'm here
Top billing Monday, Tuesday, you're touring in stock
But I'm here
First you're another sloe-eyed vamp,Then someone's mother, Then you're camp
Then you career from career To career
I'm almost through my memoirs, And I'm here.

I've gotten through "Hey lady, aren't you whoozis?
Wow, what a looker you were."
Or better yet, "Sorry, I though you were whoozis.
What ever happened to her?"
 

Good times and bum times I've seen them all and my dear
I'm still here
Plush velvet sometimes Sometimes just pretzels and beer
But I'm here.
I've run the gamut A to Z Three cheers and damn it
C'est la vie. 
I got through all of last year And I'm here
Lord knows at least I was there
But I'm here
Look who's here
I'm still here!

High Hopes

     In 1960 when I was a mere child of 12 years, I took my first airplane ride (in a prop-jet) from New York to Florida.  This trip was a gift from my grandmother to me.  Grandma Rae lived with my Aunt Miriam, Uncle Sammy, and my two cousins, Ruth and Leona.   So Grandma asked if I wanted to join them on this month long summer vacation. Who goes to Miami Beach in the summer?  We did!   We stayed in a place in called the Netherlands Hotel.   Now this place no longer exists as it was part the South Beach revival - but even in it's heyday, the Netherlands Hotel was never going to be confused with the Fountainbleu.  
     It was pretty run down but right near the beach, clean, safe, and I assume, cheap.  As a kid I had a great time (first 'older' boyfriend and first 'real' kiss).   But the other claim to fame of the Netherlands Hotel was that the Frank Capra feel-good movie A Hole In The Head, staring Frank Sinatra and Eddie Hodges was filmed there. They called the hotel "The Garden of Eden" which believe me, it was NOT.  The movie came out in 1959 and is about an impractical widower tries to hang onto both his run down Miami Beach hotel and his 12-year-old son.   And the very popular, Oscar winning original song from that movie was High Hopes.
                                           High Hopes - YouTube Video  

Enjoying The Ride - CCSVI Didn't Work for this blogger

The following post is from my fellow MSer Mitch who writes a wonderful blog called Enjoying The Ride.  I re-post here with his permission for a few reasons:  

1.  I want to present a balanced view of CCSVI angioplasty and let my family and friends know that I am being realistic about my own possible results and hope they will be equally realistic.

2.  There are many success videos out there but not that many reports of unsuccessful treatments.  I encourage anyone who's had treatment for CCSVI to post their honest, true results.  People considering the procedure deserve the truth to make informed decisions.  We feel we've been lied to for years by big Pharma, doctors, et. al - let us be honest amongst ourselves.

Thank you Mitch for an honest, clear article.

CCSVI Diagnosis and Treatment Log Entry #11 – Six Month Report

“The truth does not change according to our ability to stomach it.” - Flannery O'Connor
Here’s a bit of truth: CCSVI treatment didn't work for me.
I saw no improvement in my condition from the treatment I received on March 17, 2010. But that didn't surprise me. I wasn't looking for improvements in my symptoms. I was only hoping that I would stop getting worse. Now that six months have passed, I can state without reservation that my MS has continued to progress at the same slow, steady rate that is has since my diagnosis nine years ago.
This is difficult for me to report, for several reasons. First, I know that my friends and loved ones hoped that this treatment would benefit me in some way. Second, I know that the larger MS community holds its breath for good news from those of us who were among the first treated, because every success story brings hope. Third, I really thought this might work, and I am deeply disappointed that it didn’t.
So how do I feel about CCSVI, given its failure to address my disease progression? I am only one data point- a damned important one to me- but still only one data point. Dr. Gary Siskin, who has treated over 100 patients, recently commented that approximately 1/3 of his patients see a significant improvement, 1/3 of his patients see a modest improvement, and 1/3 of his patients see no improvement at all. I obviously fall into that last group.
Our understanding of CCSVI is only in its infancy: how it’s related to MS, how to treat CCSVI, and how people with various types of MS react to the treatment. The complex network of veins that drain the central nervous system has never been studied from this perspective. It will take many years and many clinical trials before we develop a thorough understanding.
I remain confident that when all is said and done, CCSVI will be considered the most important discovery, ever, for the treatment of MS. And if a relatively simple procedure helps so many people, instead of pumping toxic, exorbitantly expensive drugs into our bodies day after day, year after year, so much the better.
What then, is next for me? Because there is nothing else that is at all promising for people with PPMS, and because both my mind and my gut tell me that this is a game changing idea, I still believe that CCSVI treatment is my best chance. Perhaps the impact from my treatment in March will be felt later. Perhaps, although he is an excellent physician, my doctor overlooked something during my venogram. Perhaps, as we learn more about CCSVI, new techniques will be discovered that can help people like me. I expect that I’ll undergo another venography procedure sometime in the not-too-distant future, just to make sure that we haven’t missed something.
If I turn out to be wrong, and CCSVI is a bust, I won’t lament the time I spent pursuing it for myself, or advocating it for others. It’s not like I have any better medical options to chase. The opportunity cost of my pursuit of CCSVI is nil.
I plan to remain heavily involved in the CCSVI world. I must admit though, all of the positive stories that I read about online and watch on YouTube do wear on me. I know that I should feel nothing but joy for every person who benefits from CCSVI treatment, and I do. But sometimes, overlaid with this joy, is a tiny bit of resentment because I didn't benefit myself. I’m not proud of this, but I’d rather acknowledge these feelings and deal with them than deny their existence. 
Interwoven with that tiny bit of resentment, is the notion that a minority of the MS community would prefer that I remain silent about my poor outcome. They only want to hear the good news, and they fear that admissions like mine only serve to embolden the CCSVI detractors. Most MS patients, however, want people like me to relate my treatment experiences no matter the outcome, and that’s what I’ve decided to do. For a more detailed discussion of the battle between supporters and detractors of CCSVI treatment, click here.
Here’s my message to the wider MS community, and my friends who are working so hard on CCSVI issues: I am sticking with you. I am advocating for you. I am celebrating your successes. In return, please continue to listen to and acknowledge the disappointment that approximately one third of us feel when CCSVI isn't the answer.
Here’s my message to my friends and loved ones: my medical challenges are daunting, but my emotional health remains strong. I welcome and appreciate your support, whatever form it may take.
And here’s my message to myself: Keep telling the truth, and keep searching for the truth, even if it is sometimes difficult to stomach.

Dr. Rob - A Blog Post Worth Reading

Thanks to Marc Stecker, the Wheelchair Kamikazee, for turning me on to Dr. Rob Lamberts' blog, "Musings of a Distractible Mind".  Dr. Rob as he is called is a PCP (board certified in Internal Medicine and Pediatrics), and has written a very interesting post on his blog entitled A Letter to Patients with Chronic Disease.   The link is posted to the right in the Links You Should See section. (For some reason I can't get links to appear within the post - I'll work on that.)

What was so interesting to me was the cornucopia of comments this post engendered.  They were all over the place, from agreement to anger, with people sharing stories of great, compassionate doctors and horrific treatment at the hands of medical professionals.

I don't know which I learned more from: Dr. Rob's post or some of the comments.  When you have some time, it's worthwhile reading for anyone who's been frustrated at the doctor's office.  That's probably everyone reading this right now.

I haven't read a lot of Dr. Rob's other stuff but plan to look through it when I have more time-maybe while in my doctor's waiting room.

9/11, Collaboration and Cancer for Life

Today was a day for reflection on the lives that were lost, the heroes who gave their lives or their health in the rescue effort, and all their families.  With all the media hype about some moronic pastor wanting to burn a Qur'an, it was an effort not to dwell on the monsters who did this to our country but to honor the memories of those who died, I chose to think about the victims and their families rather than the perpetrators of this atrocity.  May their memories be for a blessing.
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As I typed the word "victims" I realized that I try hard to avoid using that word, especially when it comes to people suffering from an illness or disease.  But sometimes it's the only word that works.

Last night I watched as the three major US television networks showed celebrities and cancer survivors, friends and loved ones of cancer victims talking about the incredible model collaborative effort between researchers and doctors treating cancer patients. By having researchers work together instead of fighting over who published a paper first, they learned a lot very quickly by sharing the fruits of their individual research. Step two was getting the results of this research rapidly from the lab to the treatment room without waiting for the years of study that is the present model. They have saved countless lives using this "out of the box" approach.

Cancer has touched my family and many of my friends, and so I called and made a contribution to this effort;  but I could not help make the comparison between this initiative and the CCSVI naysayers who are objecting because of not enough research, no long term studies, we have to wait and see, blah, blah, blah.

The type of collaboration going on in the world of cancer research and treatment is precisely what is needed for MS.  Instead of objecting and putting up roadblocks when patients want to try a treatment that appears to work, why not collaborate to move quickly from research to treatment and make this model the standard for all diseases.  I was happy to hear about the lives saved by this cancer initiative and sad for all the MS sufferers who are being stymied at every turn. Please, let's stop bickering and work together to try ANYTHING REASONABLE that shows promise. Too many lives are in the balance; patients, and family members, friends, even employers, are all affected when one has MS. We can't afford to listen to the neurologists who push drugs that don't work argue with the radiologists who want to try a new approach. The clock is running - we simply don't have time. We need an "MS for Life" research/treatment collaboration effort NOW.  This is what the MS Societies and the NHI who contribute countless research dollars should initiate: collaborate or lose funding.  Maybe someone out there is listening.

Confirmation Received

Just a short post to let those following this that I have a confirmed date for my "liberation" angioplasty in Tampa.   It will be done on October 7th.   I arrive in Tampa on the 5th, see the doctor and have a doppler sonography on the 6th and the procedure on the 7th.   Will leave the afternoon of the 8th.

This is the most exciting thing ever, except for the birth of my son.  If it turns out anything like he did, I couldn't ask for more!

And the winner is . . .

The results are in and the winner is . . . TAMPA!   I've been speaking with the hospital and doctor's office there and am registered!   I've sent off my records, need to send one more fax today to complete the process and then I should get on the schedule.  Just waiting for that ever important date. 

In truth, the winner is really me.   Everyone I've talked to and gotten information from throughout this process has been so incredibly helpful and supportive.  The MS community is just unlike any other group.  So informed, intelligent and willing to share information.   (A little too willing because someone put the name of the doctor and hospital on a few internet sites and now they're overwhelmed with requests!)  

One person I met through my inquiries actually lives in Tampa and sent me her phone number so we could arrange to meet when I'm there.  She had the  procedure done by this doctor and had wonderful results and she now wants to help others achieve the same thing.  Another woman in Sarasota who had it done there did the same thing and started a group for people going to Tampa to network among each other.  What wonderful women!  Who does that?  Who is so trusting?  I'll tell you who: people with MS.  All along the way in my 7 year journey with this disease the most positive thing to come out of it is the people I've met.   I've made some lasting friendships locally through attending meetings and working for the society at events, and through the power of the internet I'm now in touch with MS patients all over the country and the world.

It really opens up a different view of the world.  People are inherently good and go out of their way to help.  They give their time, energy, knowledge and sometimes dollars to strangers in the hope that they can prevent others from the pain and suffering they've gone through.  They are selfless and inspirational.   I have also shared a lot of information with those who needed it and have donated many hours of my time to our local MS Society Chapter.  But my efforts are nothing compared to some of the folks I've met.  They are true angels here on earth and I have been fortunate to know them.

Those who know me longest know my motto:  "Be kinder than necessary for everyone you meet is fighting some kind of battle."   I try to live that way each day and maybe that's why I've been the recipient of so much kindness.   I'll tell you, the rest of the world could learn more than a few lessons from the MS Community.    
 

Going for the jugular in Tampa?

Yesterday I read a post and watched a video on Facebook from a woman who had the CCSVI procedure performed in Tampa, Florida.   Yes, Tampa!  Four and a half hours away from my home!   Well, this was news to me - so I immediately looked up the name of her doctor, read up on his credentials, (which were pretty impressive) and fired off an email to him at around 10:30 PM.  At 11:00 PM I got a reply!  Wow - lucky timing that he was checking his email that late - could it be a sign? 

Anyway, we exchanged three emails and I will be waiting for a phone call to schedule a consult with them.   I have a bunch of questions, and will be speaking to the woman who had the procedure done later later today - she just answered my message to her.   I was told they require 3 days in the area (vs. the 4 days California wanted).   It would certainly be easier than flying 3,000 miles away not to mention the money I'd save in airfare and hotels.   Plus I could get the follow up done by the same people who did the procedure.   I'm getting excited but trying to contain it so I'm not too disappointed if it doesn't work out.  In any event, having more options is only a good thing. 

So this is the latest in my CCSVI journey - come along for the ride but fasten your seat belts.  I've been bumped around on this ride for a few years so be prepared!

Note:  I added a link to a video of  Dr. David Hubbard. It's long but extremely informative and he also explains his version of the CCSVI theory which differs slightly from Dr. Zamboni's.   Both make sense.   It's just great that this is now opening up dialogues in all areas of medicine.

California Here I Come!

I'm excited.  I've made a decision. For the last 2 years I've been reading, learning, talking to people on line, watching videos, deciphering scientific publications, talking to my doctors and my family, and finally, finally, I have the opportunity and am ready to actually try and DO something to improve my health.

My MS friends will understand when I say we're angry and  frustrated by the medical community's very slow moving system.  This will not be a rant about health care in this country - not enough hours in the day to write about that - but thanks to the MS online community people all over the world have come together to demand - yes, demand - alternatives to the expensive, toxic drugs that are pushed on us.  For me, the drugs didn't work.  Seven years into this disease and I'm now classified as SPMS (secondary progressive multiple sclerosis) with an EDSS score that went from 2.5 to  7.  Listen people, seven is not a good score when 0=no disability and 10=death.

So when Dr. Paolo Zamboni (yep, like the ice machine) published his small study 3 years ago finding that a condition called CCSVI - Chronic Cerebrospinal Venous Insufficiency - was seen in about 92% of people with MS, we pricked up our ears. (For a short history of CCSVI click on the link under "Other Writings".)  What did that mean?  No one really knows for certain.

CCSVI for Dummies  
1.  In CCSVI the veins carrying blood away from the brain are either narrow, blocked, have a valve problem, or are otherwise occluded.  The medical term is stenosis.  This can cause the blood to reflux back into the brain, theoretically leaving iron deposits that cross the blood/brain barrier - where they don't belong.

2.  When a procedure called a balloon angioplasty (or more correctly, venoplasty since it's done on veins rather than arteries) was performed to open up these veins, many people with MS saw improvement in their symptoms.  Angioplasty is performed thousands of times a day on arteries, less often on veins.  It is done by heart surgeons and more commonly by interventional radiologists in a cath lab.

3.  Since no long term studies have been done associating CCSVI and MS, the medical community (read Neurologists) and the insurance industry (read greedy bastards), and the drug companies, (read deep pocket greedy misers) have done nothing but try to discredit this theory.  Well yeah, it's not in their financial interest and certainly will be to their financial detriment if proven correct.

4.  Because the MS community around the world kept clammering for more information, more treatment, more studies, more HELP, the world had to respond.  Only recently have organizations like the National MS Society agreed to fund studies, (but barely and not wholeheardedly - under duress IMHO).

5.  So far (that we know about) 1,200 brave people went outside the US and Canada to get this procedure done.  They posted their before and after videos on YouTube.  They started blogs and chat rooms.  They founded non-profit groups and facebook groups so we could share information.  They held fundraisers for each other.  Leaders and strong patient advocates emerged to teach, encourage and actively support those who want to get the procedure done.

6.  Many had dramatic improvement.  Some had smaller improvements.  One person very early on died after a stent migrated to the heart.  A few had no change in their symptoms.  We don't know exact numbers because this is annecdotal information, as the medical community loves to point out.  A "look back" study could be done but no one seems to be doing that.  Why not?  No money in it.

I've been learning, watching and waiting.  I asked my neurologist if he could order an MRV of the jugular veins when I had my annual marathon of MRIs last month.  He is not an advocate of this theory but he is also not opposed to it - he feels more study is needed.  Well, yes, we all agree study is needed, but my MS isn't waiting for studies - it's marching along quite happily causing me pain and fatigue and more disability.  So I can't wait.  And guess what: lo and behold, the MRV showed narrowing in both jugulars.  A third twisty vein (Azygous) in the chest can't be seen on MRV but there's a good chance there's a problem there too.  So step one accomplished - we know my veins are not normal.  What do I do with that information?
                 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Society of Interventional Radiologists held a meeting about CCSVI and treatment last month which opened the door to many more questions but also gave legitimacy to this diagnosis.  University of Buffalo has an ongoing study of 1,000 people that thousands more sought to join.   Quickly clinics were opening in places like Mexico and Costa Rica which I was immediately wary of.  Better alternatives seemed to be Bulgaria or India (strange but true).  However, I just couldn't make the leap to travel that far for a possibility of help.  An Albany clinic which is quite reputable has a huge waiting list but, I don't want to wait another year.

So this week, I read about a place in California.  They are an established practice in Interventional Radiology with Board Certified doctors, and they will do this procedure to treat CCSVI.   Email correspondence and voice mails exchanged and they said they could take me in October!  It will require a 4 day stay in the area but the procedure is done as an outpatient.   My son, bless him, also called them but got voice mail and left a message.  But he may actually know one of the radiologists in the practice from St. Vincent's hospital where he worked!  I'm now waiting for a return phone call to schedule a specific date.

I'm excited, nervous, scared, and hopeful all at the same time.  I will be one of the pioneers.  One of the brave who, despite conventional medical advice, will finally take control of my own disease.   I really think this will be a history making year in the annals of MS treatment.  Not a cure - personally, I don't think they will find a cure because in my limited medical opinion, there is not just one cause of MS.  But this can be a treatment that will let people live a better quality of life - and that is what we all want and need.  Quality of life is what it's all about.

It's expensive - insurance will not cover me.   There are no guarantees and in fact, they make you sign that you've read and understand their disclaimer.  I'm realistic and not expecting miracles.  But I'm out of choices and running out of time.  Every day is a struggle and while I'm a pretty strong person and a fighter, I'm telling you that I'm exhausted!  I have so much admiration and respect for the ones who have battled MS for 20 and 30 years.  It's so damn hard to keep fighting while staying positive.  So before I become an old curmudgeon, I'm taking action.   When I put the date on my dance card I'll let everyone know.  I told them anytime after October 1 because I have tickets for Crosby Stills and Nash and I'm not missing that!  (I also need to arrange time away from work.)  Meanwhile, anyone want to come along to California and keep me company when they drain my brain?

The Power of Song

Think positive.  It's been touted for years as the solution to almost every problem we face and I'm just sick of hearing it.  But the thing is, it works.   I don't think anyone would argue that being negative is a better position than being positive in one's thinking.   When I'm feeling positive about life I'm a happier person.  I'm more fun to be around.   I have more energy - or so it seems.  So the question becomes, how to achieve a positive mindset when you don't have one naturally.  When you wake up in pain, when you try to walk and stumble about, when your bladder just doesn't cooperate with your daily living, how does one remain positive?

One way for me is singing.  As a life long choral singer, I can't imagine a life without music.  But singing can work for anyone - you don't need to have a good voice.  You don't even need a decent voice; you just need to sing.  You can sing a happy song or you can sing the blues.  In fact, singing the blues makes me happy!  Just singing, out loud, alone in your house, or with friends in the car, or in a more formal ensemble setting, will make you feel better about life in general.   I defy anyone to be negative while singing.  Even if the effects are only momentary, it works.  Really - try it.

A theory I came up with is the breathing.  When you sing properly from your diaphragm, you are oxygenating your blood.   For those of us with MS this is quite helpful.  When I've finished a 2 hour rehearsal I leave feeling energized, not exhausted.  It's really very strange because almost any physical effort leaves me with numbing fatigue.  But not singing.   The joy of making music, the physical effort of breathing properly, the camaraderie with fellow choristers,  all give me such a positive feeling that lasts at least 24 hours.   And if it starts to fade, just start singing again!

Of course, there are other strategies to staying positive.  I keep a gratitude journal which I try to write in each night before bed, listing 5 things I'm grateful for.   Believe me, there are days when I can't think of a single thing - but as a wise meditation leader once told me, "When you can't think of anything, write that you are grateful for having five fingers on each hand and count that as 2 things."  (Note: This only applies to those who actually have 10 fingers - if not, use toes.)  The point is, there is always something to be grateful for.   Today I'm grateful that I had the discipline to sit down and add to this blog!  And always, I'm grateful for the power of song.