So much for routine!

I was hoping that I would be back to some type of routine by now.  No such luck.  Stress is gone, but with one kid home and one away, things are still hopping in my life.

I have been working hard with my trainer to strengthen my muscles that lift my toes and on those darn hip extensors!  I am really enjoying my time in the gym.  I was curious about the differences between a PT and a trainer.  I have found that when the trainer is VERY well educated, and the exercises are so basic, there is really no difference!  Of course, my insurance paid for my PT at 100%, and they pay 0% for the trainer.  I am making the most of the time that I spend with her, and am working the exercises into my day.

My stamina is back to full speed, and my walking is back to where it was before my stressful weeks.  I still have quite a long way to go to get to where I would LIKE to be, but for now I can do what needs doing.  How can I complain?

I have been fortunate to have attended two shows at the Kennedy Center in the past week, and am going again on Saturday.  There is a lot of walking required in that massive facility, especially if you park on the wrong side of the building and have to trek all the way across the joint to get to your intended theater!  I have been able to do it pretty damned well if I do say so myself!  Luckily my "fancy" black cane matched my outfits beautifully, and I had a handsome man's hand to hold to complete my look.  Priorities, right ladies?

I am trying to steer clear of the heat, although high school gyms are like saunas on a bad day.  Don't even get me started on the aroma!  Aaahh... but to get to see my girl sink a great basketball shot is worth it all!

I took a break from blogging last June (here) because I was struggling with figuring out my next move.  I had nothing good to share, and needed to give myself permission to take some time off to find a new doctor to retreat me.  Luckily I was able to do that much more quickly than I had imagined.  I found Dr. Haskal and was retreated just one month after I signed off for the summer (here read Part 3)!

I am going to allow myself to take a more relaxed approach to blogging this summer, too.  Not because anything is wrong.  In fact everything is good again, and seems to just be getting better.  I am in awe of the stamina of Joan Beal and her tireless dedication to the CCSVI in Multiple Sclerosis Facebook page.  I think that the world might actually stop turning if she took a vacation from her role!

Luckily for me I am not Joan.  I appreciate being able to share my little role in this awesome new discovery.  But as a small player, I have the luxury of taking breaks.  I promise to share with you any newsworthy developments in my life, but I won't bore you with my everyday minutiae.  I value your time as well as my own!

Have a great summer my friends.  I intend to do the same!

Crazy busy!

I have been feeling guilty shirking my blogging responsibilities!  I try to post weekly but these past two weeks have been filled with awesome celebrations, end of school activities, and preparing my kids for their summer adventures.

The heat has definitely been impacting my ability to accomplish all that I have on my "to do" list.  I spent a full hour in Target on Tuesday checking items off of the camp packing list.  Did I mention that I spent an hour walking the aisles of Target?  That is huge for me.  The downside is that I was noticeably wobblier the next day. Aah...  I hate rebound!

The good stress of all of these exciting events has impacted me in the same way bad stress does.  My walking suffers, and my fatigue increases.  I am anxious for this wonderful week to come to a close, and for my lovely boring life to resume.  I thrive on routine!

So this post is necessarily short in order to check one more item off of my list.  I feel the weight of my week getting lighter by the minute.  I should have definitely done some meditation, or at least deep breathing exercises during all of this craziness.  I didn't make the time.  In hindsight that is pretty stupid.  Tomorrow I cross the finish line, so I will stop and smell the roses again beginning Monday.

The top of my next "to do" list will be to practice all of my wonderful relaxation strategies so that I will be better prepared for the next inevitable stressful time in my life.   I'm just too busy to start right now! ;o)

Breaking news: heat is hot!

File under the "what was she thinking?" column:  I went to the soccer game yesterday that I specifically said that I was NOT going to go to.  The day started off beautifully.  It was cool, and even a little breezy.  Well just because it is nice at 7:00am, does not mean that it will STILL be that way at 1:00pm.

It got hot.  88 degrees hot!  When the temperature gets that high, standing in the shade does little to cool the body.  Big dummy!

I had trouble walking back to the car, although I did fine even on weak legs.  I was also exhausted.  And I was not one of the girls running around in the bright, hot sun for the whole hour!  Ahhh... to be young.

Conclusion:  Nicole cannot, I repeat CANNOT stand the heat like an "average" person.  Liberation has given me back so much, but improved hear tolerance is not one of those things.  Now I know for sure.

Luckily there are pre-game cool showers, cold beverages, and cooling vests to enable me to cheer for my girl when I want to.  I can also drop her off on days like yesterday and hang out at a local Starbucks drinking something other than hot coffee if it becomes necessary.

The good news is that I bounced back very nicely today.  I took my soccer-playing girl shopping to three different stores with no problems.  I guess a little bit of heat, in between air conditioned cars and stores is o.k.  Sitting in it for an hour or more, without adequate preparation, is just plain stupid for me.  Lesson learned.

On another note, I saw Dr. Haskal on Friday.  Unfortunately he was running very late, but it gave me time to take some notes on my Blackberry so I wouldn't forget everything I wanted to tell him.  He swooped into my exam room with apologies for his tardiness.  Hey, it happens.  I proceeded to pull out my phone to read him my list of improvements.  Then he pulled out his phone to record me telling him all about them!  The wonders of modern technology.  I could have emailed him my list and saved myself the two hour round trip to Baltimore!

Actually it is important to meet with him in person.  The trip was not a waste of time in any way.  As always the good doctor just shook his head in amazement as I rattled off all of my improvements.  I know that my changes are almost as valuable to him as they are to me.  I get to feel better, and he learns what is possible with this treatment from seeing me feel better!  A win-win if I've ever seen one.

I told him that I will occasionally send him email updates, but that I hope not to need him for at least 8 months this time!  My trajectory has been to double my time between restenoses after each treatment.  The benefits from the first treatment lasted about a month, the second one lasted two months, and the third treatment lasted four months.

Plenty of people have made it far longer between treatments than I.  Many have not been as fortunate as even I have been.  Just as each person's MS is highly individualized, so too, is each of our responses to balloon angioplasty.  The techniques and experience of the doctors also play pivotal roles in our outcomes.

We are still in the infancy of this treatment,  and what it means for those of us with a diagnosis of multiple sclerosis.  Anyone who is feeling well enough to be able to wait,  who cannot afford the very likely follow up procedures, or who is just afraid to be a guinea pig should definitely consider sitting out this round.

I was exchanging private messages with a woman on a CCSVI forum last week.  She started a thread asking for the names of the best doctors performing this procedure in the US.  She seemed desperate for assurances about specific techniques and outcomes.  I felt her anguish.  I wrote to her privately that no one could give her all that she wanted.  I suggested that if she was so anxious about making a wrong decision, or experiencing a less than excellent outcome, that she should seriously consider taking a deep breath and waiting.

She thanked me for my thoughts, and agreed that she should wait until there is more information with which to make her decision.  I sensed a more relaxed woman as I read her words.  It seemed that it was a relief to give herself permission to wait.

Being a pioneer is not for everyone.  I have passed up many opportunities to participate in clinical trials for MS treatments.  None of the potential benefits ever seemed worth the risks for me.  I was always so appreciative for the people who stepped up to take part in trials.

With CCSVI I had no hesitation about being the first one to hop up on Georgetown University's table.  I made sure I was well informed, but I also had a lot of luck, or fate, or  whatever you choose to call it, on my side.  I am confident that this gamble I have taken has been one of the best decisions of my life.

When everything clicks

It has been a whirlwind week + since my last post.  I wrote last Monday that I was having a stellar day.  That pattern continued through the rest of the week!  Perhaps it took 12 days to recover from the procedure so my body could finally show me some consistent gains.

My balance, walking, and fatigue level have all been great.  Of equal note is the dramatic reduction in spasticity in my legs.  I take 20 mg of baclofen first thing in the morning.  I've never been able to skip, or reduce that dose, even after treatment.  I had begun taking 20mg of baclofen at dinnertime a few weeks before my treatment.  I continued to need that dose for at least a week post-procedure.  I realized a few days ago that I hadn't taken a dinnertime baclofen in days.  I wish I could understand how blood flowing freely from my brain can reduce spasticity in my legs.  While I can't explain it, I have lived it FOUR times now!  Too bad spasticity cannot be measured easily, like walking is evaluated using the EDSS scale.  Spasticity and fatigue are two symptoms that frequently show dramatic improvement from Liberation, but will probably never be included in studies because they are subjective measures based on patient reports.  Sigh...

I met with the personal trainer I mentioned in my last post.  What a compassionate and gifted woman she is!  We did a lot of evaluation in our first meeting.  She made me feel great because she was impressed at how strong I am.  And here I was feeling like a weakling!  It is all relative, I suppose.  She told me that she has worked with MS patients (they probably have CCSVI but don't know it yet) who are more advanced in their disease than I.  She is excited to see what we can accomplish together.  So am I!

It will be interesting to see the similarities and/or differences in working with a trainer vs. a PT.  Whomever I am lucky enough to see, having one on one attention feels luxurious- even when they are kicking my butt!

I have been managing the heat by staying inside most of the time.  When I do venture out, I am not feeling too badly.  My walking does not noticeably deteriorate, nor does fatigue overwhelm me.  I am still going to let someone else take my daughter to her soccer game on Saturday.  It is one thing to successfully walk through a parking lot, or ride the Segway to the bus stop when the heat index is 105°.  It is another thing to sit in that hot sun for an hour!  I know my limits.  I feel badly for the poor kiddos who have to actually play in this heat!


My greatest accomplishment this week was getting in a swimming pool and playing with my girls on Memorial Day.  And I didn't just get in; I DOVE in!  Lots of oohs and aahs from my family and friends.  Even more impressive than my dive was my ability (with the gallant assistance of my wonderful husband) to climb the stairs out of the pool.  This pool does not have a handrail, so he held my hand.  What a great sense of accomplishment I felt with each step!  Fear of being too weak to get OUT of a pool has been the thing that has kept me from getting IN for several years.  No more!


Finally, I went dress shopping today in preparation for a busy social calendar this June.  I am a woman who dislikes shopping.  I didn't like doing it even when I had no physical limitations.  I have learned to take advantage of the wonderful personal shopping services offered by most department stores.  The first time I did it, I was worried that I would only be shown very expensive clothing.  Not so!  I spoke with the shopper in advance, and I arrived to a dressing room full of dresses in my size just waiting to be tried!  Once we picked the perfect dress, the woman went to the shoe department and brought me several pairs to try with the dress.  THEN a salesperson from the lingerie department arrived with choices of underthings to make my sassy spaghetti-strapped dress wearable, if you know what I mean.  I just sat there and thanked them profusely!  This service is free to anyone, not just to people with physical challenges.  I have been fashionably-challenged my whole life, and have often been saved by these talented salespeople.  It works to take a fashionably-gifted friend shopping with you, too.  Mine was hard at work today (right, Sher?), so I did it all by myself (o.k...with A LOT of help!)


I am excited to see Dr. Haskal on Friday.  I have lots of wonderful things to report!  Perhaps I will just print out, or email this blog for him to read.  What more is there to say?