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.