Patience is running thin

I've been having a rough week, mentally and physically.  My head is still good, but my feedback from Dr. T. was not all that I was hoping it would be.  He and Dr. Neville are both very busy.  They are not prepared to learn more about the azygos vein just yet, despite the fact that I made contact with a doctor who offered to help them if they would just ask.

This is one of those times when being first is not all it's cracked up to be.  Doctors need to see things published in peer reviewed journals.  There is just not enough published about CCSVI.  I respect their ways, of course.  I just wish that time moved faster in some ways, and slower in others.  Quick lets see more info about correctly visualizing the azygos vein, and slooooow down my legs getting weaker!

I have begun to investigate other options to get my azygos looked at.  It is still too soon to know when or where that will happen, but the wheels are in motion.  I got liberated within three months of learning about CCSVI, so nobody should underestimate me!

Would I do it all over again, knowing what I know now?  Hell, yes!  I forgot what it felt like to have cold purple toes, to be a snarky bi*#h in the evenings, and to choke and scare my family.

I am lucky that I already possess the tools to live my life on shaky legs.  I have canes, the Segway, even a scooter, not to mention the best support system that a woman could ask for!  I just wish that I didn't need to use them.  I firmly believe that it is always better to have and not need, than to need and not have.

So this story is still writing itself.  I believe that I have many more chapters to go until I get to "The End."  Not in the morbid "The End" sense, just the wonderful one where everyone lives happily ever after!

I am looking forward to my 3 month ultrasound on Friday, and my appointment with Dr. T. the following week.  I have many questions for him, and I am sure he has much to tell me. 

Stay tuned...

Life's a beach!

Really, it is!  We just returned from a couple of days in Ocean City, MD with good friends.  No, I did not plan our trip to coincide with Cruisers Weekend, I assure you.  Their revving engines were close to deafening, but the gorgeous cars were quite a sight!  People lined up chairs all along the main drag as the cars spent all day Saturday "cuttin' town".  I don't know if it was more fun seeing the cars, or all of the people sitting for hours watching them!

Anyway, I was not optimistic that I would be able to make it onto the actual beach.  I'm having enough trouble on flat surfaces, who do I think I am trying to walk on soft sand?

On Saturday morning we started the day with our traditional Fractured Prune donut breakfast.  You don't know donuts if you've never had these.  A little bit of heaven!  Then the wonderful husband and equally wonderful friend A. suggested that they would each take one of my arms to escort me to the beach.  They even offered me piggy back rides.  I graciously declined that strategy.  Handsome middle aged men should not be giving piggy back rides to anyone over 10 years, or 50 pounds.  I just miss both cut offs.  Darn!

I was skeptical but willing to try the walking suggestion.  We made it!!!!!  They were such strong, gallant escorts!  It felt so great to be able to join in the fun.  Well, at least sit in my chair and watch the kids having fun.  The guys even went to pick up lunch and bring it back so we could picnic on the beach.  Love those guys!

After a few hours they walked me back.  I can't believe that I really did it!  I was ecstatic!

Later that day we hopped in the cars to head for the boardwalk.  My legs were tired but that is why we have the trusty Segway.  We put the kids on rides, ate lots of boardwalk junk, played too many arcade games, and generally had a great time.  People watching is the best activity on the boardwalk!

What is fascinating is that I did not fade mentally.  Pre-lib I would get short tempered and totally exasperated after doing all that we did.  This weekend I had the mental ability to enjoy it all.  When we stopped at Candy Kitchen to let the kids get candy, I didn't get all pissy when it took a full 30 minutes for them to pick the exactly right stuff.  We were in the car on the way back to the apartment at that point, so I just sat in the car and scrolled through the adorable pics of our great day. 

Take all the time you need, kids!  I'm good!

I was physically pooped on Sunday, so we skipped the outlets on the way home.  We did stop for some awesome Maryland crabs on Kent Island, though.

All in all we did everything one should be expected to do in a 48 hour beach trip. 

I might still have azygos problems, but I love my free-flowing IJVs, and everything that they allowed me to enjoy this weekend.

The elusive azygos problems

There are many naysayers in the MS community, governments, and  drug companies who swear that all of the gains claimed by those of us who have been liberated are really just a placebo effect.  Perhaps some improvements really are the result of the placebo effect, at least the short lived ones.  But how long can a person wish her cold purple feet to be warm and pale pink?  Certainly not for 11 whole weeks! 

And don't you dare tell me that my perfect swallowing and sharp thinking are not real!  The placebo explanation can only be taken so far before even the most adamant disbelievers have to just shut up.

Unfortunately, if all it took was intense positive thinking, I would surely be walking better by now.  I'm not.  I have been patiently waiting for 11 weeks for some sign that the nerves to my legs are improving.  I have been concerned for several weeks that they are not.

When Dr. Neville did my venogram, he skillfully ballooned my severely stenosed IJVs.  I believe that based on my sustained improvements mentioned above that they are still wide open.  He checked out my azygos, and saw a small amount of dye refluxing.  He searched high and low but was unable to find a cause.  This man is is the chief of vascular surgery at a top notch US hospital.  He knows his way around the venous system.

But this is new territory for even the most experienced surgeons.  Nobody taught them specifically about CCSVI in medical school.  It wasn't even known to exist until a few years ago, and then only in one hospital in Italy!  It is different than anything they have ever seen before in many ways.

So I believe that despite his best intentions, I am only 2/3 fixed.  I am confident (well as confident as a non-doctor can be) that there is something wrong in my azygos vein.  Wishful thinking perhaps, but I never doubted for one minute that I had CCSVI when I first began learning about it in November, 2009.  And I was right.  I believe with all my heart that I am right again. 

What if I am wrong?  The worst thing that will happen is exactly what is already happening right now- my walking and balance are deteriorating.  And I will be really sad.

But I've been (literally and figuratively) picking myself up and dusting myself off for a long time now.  I still have a wonderful support system, and the above mentioned gains now, too!  I'll figure it out, just like I always do.

The damn optimist in me doesn't really think it will come to that.  I spoke to Dr. T today.  He is meeting with Dr. Neville tomorrow to review how things are going so far.  I made him well aware of my concerns, and he has always been an excellent listener and advocate.

I have great confidence in the brain power that is going to be in that pow-wow tomorrow.  They are very brave and bold for their willingness to take on CCSVI.  Too many other doctors and hospitals are content to sit on the sidelines and let others do the initial hard work.  I've said it before, but I am so proud and lucky to be a patient at GU.

Dr. T. told me that he would let me know what comes out of that meeting.  I can't wait to hear!  Ultimately, all of us patients, neuros, and surgeons want them to be successful.  I am confident that they will do whatever it takes to achieve that success.

For all of you

I am so appreciative of the positive feedback that I receive from so many of you about this blog.  Thank you so much for your interest and support!

I have nothing very interesting to report since last Tuesday, but I don't want anyone to think that I am slacking off!  One thing that I hear from many people is that they like that I post regularly.  I wish I had more exciting things to report, but I suppose that holding steady is nothing to sneeze at!

I have been busy communicating with my fellow GU liberators.  We are sharing our ups and downs.  It is so good to have friends who share similar experiences. 

I can report that GU is now doing up to 5 procedures a week.  Dr. Neville is doing 2 on Wednesdays, Dr. Laredo is doing 2-3 on Fridays.  I have heard from a woman who was just scheduled with Dr. Neville in mid July, so his dance card is filling up quickly!

I will be having my three month follow up ultrasound and appointment with my neuro in the beginning of June.  It should be interesting.  Have no fear; I will report it all here!

The joy of taking stuff for granted

I am a firm believer in counting one's blessings daily.  No matter how bad my day may have been, I know that someone else's was worse.  I don't spend my time building myself up on the backs of others, but perspective is a valuable tool to keep a person humble.

At some point over the past two months, I have had the luxury of beginning to take some skills for granted.  I cannot tell you the last time that I choked.  Up until recently I made a mental note of every drink I finished choke-free.  I haven't done that in the past week.  I sometimes forget that almost aspirating water or juice was a regular part of my week.

My feet are not purple.  I don't even pull off my socks several times a day to check anymore.  I just know that they are pretty light pink.  I'm even going to celebrate by getting a pedicure next week!  I'm gonna soak them in tepid water, though.  I am still not sure about heat and me.  Hey, it has been a love/hate relationship for so many years.  I have trust issues with temperatures over 98.6 degrees. 

I am still marveling at my improved mood and patience level, though.  I can assure you that my family is, too!

I may not have any big exciting improvements over the next many months.  I think that I am going to be that tortoise who wins with slow and steady progress.  That's o.k. with me.

Will my walking ever really improve?

I had a rough day below the neck yesterday.  My legs were weak, my balance sucked, and I felt frustrated.  I threw myself a modest pity, and contemplated the idea that maybe my legs might not improve, or possibly get worse.

Then I spoke to my new friend, and fellow GU liberator, R.  She might be even more stubbornly optimistic than I am!  She insisted that our wonderful doctor assured her that if you can still feel, your nerves aren't dead yet.  She takes the constant tingling in her limbs as proof that the nerves are still working; they are just damaged right now.  When given the opportunity to heal, they will.  I have never met anyone who can out-positive me before.  I am so glad that I think that I have met my match!  She told me what I needed to hear, exactly when I needed to hear it.

Then I remembered how damn sharp I was on Sunday and Monday when it came to driving to new places.  I got myself to Clyde's deep in D.C. with the help of Mapquest.  But I made it home all by myself without any help!  For this usually directionally-challenged woman that is almost miraculous.  In the past I would have gotten out of the parking garage and immediately called the wonderful husband for step-by-step directions.

On Monday I headed out to Boyds, MD to take a new friend to lunch.  It is about 30 minutes from home.  She has recently become legally blind thanks to MS.  How dare I complain?

Again, Mapquest got me there without a hitch.  But I was amazed at how easily I remembered the several turns to get out of her 'hood, then back again after lunch, and back to the highway to head home.

In the past I would have had to try to reverse the printed directions, and stressed about my total lack of navigational skills.  On both of the above occasions, I was able to confidently hold clear directions in my head, and more importantly, manipulate them on the fly!

So I am still safe to drive, I can think clearly, I don't choke, and have warm extremities.  Oh yeah, and it's ONLY been two months since my procedure.  What in the hell do I have to complain about?!?

That final overview was, oh so gently, laid out for me by my wonderful husband at breakfast this morning.  He is the one who suggested that I blog about it. 

There is nothing like counting your blessings to help put life in perspective.  I am humbled and grateful for the skills that I have retained, and those that I have regained.  But none of that compares to the gratitude that I have for the people who lift me up when I am down, and support me every day of my life. 

To my incredible husband, wonderful children, and indispensable friends:  thank you.  And to my awesome Mom who has been my cheerleader my whole life, and lifesaver on too many occasions to count:  Happy Mother's Day!  I love you all.

2 month update

When I last left you, I had just completed eight minutes on my stationery bike.  That is three more minutes than I had attempted in the days before.  I needed about ten minutes before I felt strong enough to hop (well, you know what I mean) into a HOT shower, then dry my hair.  Perhaps only you other MSers can appreciate being able to do anything else after all of that heat!

Then I had lunch and headed out to volunteer for 2.5 hours at the team packet pick up for The Race for Hope.  I love a girl who is bravely battling a nasty brain tumor.  Since I can't WALK the walk, I help in other ways.  I sat at the frantic check in table and guided tons of people through the process.  Exhilarating and exhausting!

I brought home two boxes filled with shirts and race numbers for our team.  Then my daughter and a friend helped me sort and arrange everything for our teammates to pick up before race day on Sunday.  Then I made the girls paninis for dinner.

Finally, I picked up my other daughter and a friend at school at 9:45 after a play, and took the friend home.

What a day!  And I did it all!  It felt great.  Until Friday morning that is.

New rule:  Just because I can do it all, does not mean that I should do it all.  At least not in one day!

I was wasted on Friday, although I somehow managed to get my girls to the lab for routine blood work at 8:00am.  The wonderful husband had to take them to school after that because I was done!

I spent the rest of the day on my a$$, and if I had bon bons, I promise you that I would have been eating them!  But I got it together enough to go to our wonderful friends' house for dinner.  Although my legs were still weak, the brain sharpness was all there.

Saturday morning I drove downtown to a brunch sponsored by the MS Society.  It was a schlep to get to Gallery Place Clyde's next to the Verizon center.  I felt compelled to go because it was the Young Adults meeting for 20-40 year olds.  This was my last hurrah!  If I tried to sneak in next year, they might card me at the door, and I'd be booted out on my well rested a$$!

I sat at a table with some very interesting people.  What was fascinating was all of the different treatments that we represented.  One woman was in the original Campath trial and doing great, another is on Rituxan.  The other two are on Avonex and Tysabri.  But the most amazing coincidence is that I randomly sat next to the only other person in the room who had been Liberated!  What are the chances?  She is a patient of Dr. Dake, but told me that, unfortunately, she has not seen much, if any, improvement.  It was sobering to hear.

I imagine there are more people out there like her.  We just don't hear from them.  If you were lucky enough to have this procedure, and then NOT get any benefits, would you be blogging and posting on forums?  Didn't think so.

I am so grateful for the improvements that I have achieved.  But I still get a little jealous sometimes of those super responders who have crazy improvements only hours or days after Liberation.  I can only imagine how disappointing it must be to go through it (with 4 stents) and get nothing.

I wish I had asked her if she has at least stopped progressing.  That really is a huge achievement that I think gets lost in all of the excitement of improving symptoms.

Anyway, my days have been crazy full since last Thursday, so I have not been back on my bike since then.  I'm signing off to go do it right now!