Sunday, September 26, 2010

Weather changes, MS seminars, and Fighting a cold

Today is Sunday, September 26, 2010, it is almost noon, and I am technically still in bed.  I'm not sure when I first woke up due to the bladder knocking on my brain.  But I am sitting/laying here with my lap and attempting to catch up on blogs, emails, etc.  It is so cool that I'm able to do this.

The last few days have been extraordinarily busy.  Actually, when have I not been busy lately?  I'm not so sure.  It has been non-stop since the end of August, it seems.

So here's what's been going on in my world lately.

Last Friday (week ago), I went clothes shopping with my Mom.  I hate clothes shopping.  I'm used to nothing really looking good or fitting well.  With my continued weight-loss, it has been over 10-12 years since I've been at my current weight.

It was truly a guess at appropriate sizes for many items and the saleswomen was helpful to go get smaller sizes in several things I liked.  For goodness sakes, I actually walked away with shirts and jackets which are sized 16 or 1X.  What a mind trip that was, especially since I still FEEL very fat.  I even picked out two pairs of pants which accommodated my hefty thighs.  Since the pants were too long and the waists were too big, the store altered them for me (a service which is provided for full-price items purchased there).

I'll be wearing some of these new clothes during my trip to Philadelphia this week and on other trips scheduled this fall.  Such beautiful colors are in fashion in fall...seems to be a good time to gain a new wardrobe.

Last Tuesday, I went back to the store to go bra shopping.  My current bras were all completely stretched out and floppy, providing absolutely no shape or support.  Surprise, surprise...there are now more chooses for ladies like me who are amply endowed in the bosom area.  My size had not changed that much since I was last fitted; only the band size was smaller.  I was fortunate to find not just one bra which kinda fit, but had several beautiful bras from which to choose.  Decisions, decisions.

Thursday, a videographer came to the house to tape videos which will go live on MyRACentral some time in the future.  (I don't know when.)  I had written up "points" for 10 different topics ahead of time and included my personal notes of what were important things to cover.  Well, the camera guy helped to make sure that I mentioned all of the points because I had submitted them to HealthCentral ahead of time.  Next time, I should make it a bit easier for myself and try to be less thorough, LOL.

Saturday (yesterday), I attended the 15th Annual Fall MS Seminar put on primarily by health professionals from my neurologist's office.  Although I had called out to meet other online MSers in the area, I didn't connect with any bloggers.  However, I did get to meet-up with a newly-diagnosed MSer who happens to be a trumpet player.  I got to meet her trombone player husband who plays in the Navy Band in DC.  We know lots of people in common.  After the seminar, the three of us went out for a great lunch.  (Rob had wanted to come to the seminar but has developed a really nasty cold and stayed home.)

I read so many folks who complain that their neurologist doesn't give any credit to the idea that diet or alternative approaches can be helpful in treating MS.  My neurologist is not one of those doctors.  Of course, he does focus on getting patients started on drug therapy early on, but he will just as quickly suggest that you stop drug therapy if it is not working out for you.

The sessions went very well together.  Dr. Allen Bowling (author of several books focusing on alternative medicine and MS) talked about a 5-step approach to treating MS, combining traditional treatments with alternative or complementary treatments.  It was nice to hear a lecture from neurologist who obviously maintains an open mind in assessing what will best benefit the individual patient.

Dr. Simsarian (my neurologist) discussed emerging therapies in the pipeline and the results of recently completed research studies.  Since it was very timely that Gilenya (FTY720) was just approved by the FDA this week, he discussed more about this new oral therapy.  Dr. Simsarian is a funny guy, probably the class clown in medical school.  He did explain that the first dose of Gilenya must be taken at the doctor's office and the patient observed for six hours for signs of serious reactions.

In a light-hearted way, he described patients coming together on a special day to all pop that first pill at 9AM sharp and begin their observation period.  Bring your own chairs to line the hallways.  Wait around for about 6.5 hours - "not much more than a normal visit, if you are one [a patient] who regularly comes to our clinic."  Ba-da-bump.

Next, a dietitian discussed good nutrition for overall health.  Then Michelle Smith, my nurse practitioner, discussed how to get the most out of your medical care.  She provided lots of practical advice which every patient should know from being prepared for your appointments with information and questions, to being completely open and honest with your doctors (and how the information which goes into your medical record is "sanitized" so you don't need to worry about it being in a permanent record), to the idea that if you are wondering whether to call the office about a new symptom or something, then you should certainly call the office.  All good things to hear on occasion.

The final session was led by a neuropsychologist who started by discussing Stress and MS.  She gave practical advice on the role stress plays in life for any of us, including methods to reduce that stress.  She discussed cognitive difficulties which can be caused by being stressed (and not necessarily by MS itself).  Not on the session description, but she discussed the stress which carepartners experience.  About half of her session was aimed at the carepartners and loved ones in the room.  Very nice!

Although the seminar has to be supported financially somehow, and it is the pharma companies which have the money to spend on patient support, the seminar itself was heavily geared at non-pharmaceutical ways of dealing with the challenges of MS.  I personally didn't really learn that much (ok, I learned about one new drug in the pipeline but that was about it).  But I did appreciate witnessing the importance which treating the overall person is the focus of my own healthcare professionals.

I was a tiny bit surprised that during any of the opportunity for questions that nobody attending the seminar asked about CCSVI.  Very interesting.

Tomorrow I am hopping a train to Philadelphia for a conference and today I am stocking up on excess vitamin C and vitamin D.  I started feeling as though I might be catching Rob's cold.  I certainly hope not, but I am going on the offensive with this one.  I even picked up some Zicam in the hopes that it too will help to keep things calmer than they might otherwise be.

OK, now I'm looking at the clock on my computer.  I've spent the past hour working on this post.  Sorry, I didn't give more detailed information on the seminar sessions.  The handouts and my notes are downstairs and I was too lazy to go get them.  :)   Time for lunch I think.

Take care of yourself.  Oh, btw, after a few lovely early fall days here in DC, it was in the 90s Thursday, Friday, and Saturday.  I see that it is now 64 degrees right now although I haven't opened a window nor gone outside.  All these extreme changes in temperature can't be helping me in avoiding this cold which is trying to take hold.  Yuck.


  1. Hope you don't catch that cold. Sounds like you've got a good neurology team there; the seminar sounded interesting. I am surprised, too, that no one brought up CCSVI.

    Congrats on the weight loss, keep up the good work.

  2. Good luck with the cold. The nurse must have given it to you. LOL

  3. Speaking of medical records, my former neurologist shocked me.

    After repeatedly requesting my records (since April) Alex finally got them the other day at the cost of .75 a page.

    What did I see? Comments such as... "Apparently her daughter died..." Apparently? My heart stopped beating with that one for a good ten minutes.

    There was lots of crap like that in my chart. Now it is part of my record and I don't know how to fix it.

    I wasn't pissed. It was akin to being slapped.