1.31.2012

Pittsburgh: A bust!

Now that it is snowing, I figured it was about time that I got to the end of our summer Baseball Stadium Road Trip (BSRT).  Better late than never, right?  Last stop, Pittsburgh!  (Read about our adventures in New York, Baltimore and DC here). 

All throughout our trip, we heard from so many people how amazing PNC Park was and how it was destined to be our favorite.  And as the title gives it away, eh, not so much.  

It's not the stadium's fault though.  It was the rain.  And our experience the night before, eating at the funkiest restaurant I've ever been to.  Shall I begin? 

We arrived in Pittsburgh at around 4pm on Sunday, checked into the DoubleTree and ate a hot cookie.  Things were looking up!  

It was raining and there was no end in sight.  But luckily, our hotel offered free shuttle, so we had a free, convenient ride to dinner.  We planned on going to an interesting new restaurant called Meat and Potatoes, and in fact, got dropped off there.  But it wasn't until after our shuttle drove off that we realized the restaurant was closed.  (Even though we did check on-line and it was scheduled to be open).  Grrr!  

No big deal.  We'd just have to walk, albeit in the rain, until we found somewhere to eat.  But we couldn't go far, because we didn't bring Aless's wheelchair.  The only restaurant that was open was Christos, which served authentic Greek cuisine.  So, that's how we ended up in the twilight zone.


Totally bizarre place.  The food was fine.  But the food isn't the story.  It was our waiter, who I thought looked like Joe Dirt: 

Source.

But Alessandro thought he more favored Matt Stone in Orgasmo:

Source.

I think we were both right.

He said nonsensical things like, "Yeah, that's when this thing ha, ha, ha, right up into the....did someone take your order?"  And indecipherable things like, "Would you like transmaglef, right on."  What?!  Alessandro and I kept exchanging glances to make sure the other was fully grasping the craziness of the situation.  

When we sat down, I got a glass of water with red lipstick smothered on the mouthpiece.  I asked for another glass and a server (not our waiter) brought me a new glass, but not before lecturing me on how the chemicals that make up smear proof lipstick are near impossible to wash out of glassware.  I shook my head and agreed, but really I was thinking that a little soap and water should do the trick. 

Then, our waiter (let's call him Joe) brought us out hummus, which I don't believe we asked for, so we thought it was complimentary.  It wasn't.  I said that I didn't believe we asked for it because we were not sure what we were responding to when Joe would come over and say things like the above ramblings.  It was like a foreign language (and no, English was not this guy's second language, so that wasn't the issue) and instead of saying, "Huh?" over and over again, we just resorted to nodding our heads and smiling.  Another table saw that we were served hummus and asked their waiter (a 10 year old boy...more on that later) if it was complimentary.  He said he didn't know.  And that was the end of that conversation.  

We sat for about 20 minutes, not having yet ordered, and watched Joe out front enjoying a smoke.  Then, the same server who got me a lipstick-free glass of water finally took our order.  Joe came in from outside about 10 minutes later and asked us if we enjoyed our meal.  But then he realized he never took our order, got really confused when we told him we ordered with someone else, and walked away after saying something indecipherable.  Twilight zone people.  

Meanwhile, the 10 year old boy, who was a very inexperienced waiter, but so cute in his cowboy hat and boots, was helping one table with an older husband and wife couple.  The wife was a retired teacher, and bless her heart, she was so very patient with the boy.  It was really nice to see how kind she was treating him...even though he was unable to answer several of their questions about the menu items and no one was supervising him to make sure the paying customers got the service they deserved.  

Our food was served, and it was actually decent.  (Or "dece" as our friend, Brian, would say).  I waited at the register for 10 minutes to pay our bill and finally the cook came out to take my money...Joe was nowhere to be found.  We headed back to our hotel and hoped that the next day at the ballpark would be less weird.

Well, the next day was WET.  It rained, rained, rained all day.  This was the only day game that we had been on all trip, and it was the only game with bad weather.  Bummer of a way to end the trip, but we made the best out of it.






The park was dece.  The food was just okay.  I don't remember what I had, but Alessandro had the famous Pittsburgh Primanti Bros. sandwich and hated it.

We had only planned on staying for a few innings and then getting on the road home early, but there ended up being a 2 hour rain delay, so we waited around.  In the meantime, we went to guest services to switch our non-covered seats to covered seats so we would could enjoy the game a bit more.  Guest services tricked us into taking some very lame seats in right field that were covered, but were behind a fence so we unhappily watched the game from our seats behind a fence and under a covered, but leaky roof.  Lame was the name of the game and P-Burgh. 


Finally, we said goodbye to that city and headed home.




It was the greatest vacation Alessandro and I have ever had.  For anyone who loves baseball, a BSRT is a must.  There is nothing like it.

We have been planning our next BSRT ever since.

1.30.2012

Belle Isle's Ice Tree

In 34 degree temps, Aunt Lu-Lu and I ventured off on another enjoyable 5 mile walk around the Island last week.  There is something so relaxing about being outside--even in the cold winter months.  It's good for the soul, as my Aunt says.  The fresh air really does make you feel good...and it wasn't as cold as one might think it would have been.  (Especially since I had on 3 pairs of pants, 5 shirts and hand warmers inside of my mittens!  Ha!)

My Aunt introduced me to Belle Isle's Ice Tree last time we were on the Island.  But it wasn't even close to freezing then, with the unusually nice January weather.  But this time, it was at its beginning stages of freezing.  (I didn't take my camera with me this time, so pardon the poor quality of these phone pics.) 



If you look closely at the top, you'll see that water sprouts out of the pipe at the top of the tree.  



I wish I would have had enough sense to have recorded a video of my Aunt trying to walk up to the tree.   It might have been one of the funniest things I've seen in a long time.  As you can imagine, the area surrounding the tree is SO icy and dangerous and there is nothing to hold onto if you lose your balance.  It's a miracle she didn't fall on her arse...oh wait....she did. 


We were cracking up!  And luckily a gentleman and his grand-kids pulled up just in time for the show.  Poor Tia Lu-Lu walked away defeated.


And wet.

I look forward to seeing the tree get as big as it did in 2009:

Image found here.

Maybe next time we'll bring our ice skates. 

1.27.2012

Are You There, Brain? It's Me, Alessandro.

Alessandro's brain from his July 2010 MRI


Alessandro had his 3 month checkup with the neurologist yesterday.  Would you guys like an update?  Mmmk....

Symptoms

He had no new serious symptoms to report and no real changes in his regular symptoms (i.e., twitching, spasticity, lack of sleep, numbness).  But, he did report that he experienced lightheadedness a couple of times about a month ago, which could have been due to one of his meds, but also could have been due to his lack of drinking water or eating properly.  He also reported that he has noticed his hands shaking a bit more than usual.  The doc said that she's noticed slight shaking with him in the past, and that if it seems to him to be a problem, then he could try wearing a small weight on his wrist.  Al didn't feel it was an issue, so we'll wait on the weight.  

Strength & Speed 

During each doctor visit, his strength is tested by the doctor, who pushes down and pulls on his limbs, and measures his ability to resist her push or pull.  Last visit, Alessandro was able to completely resist her pushing down on his right knee.  This time, he showed little to no ability to resist her push, which meant that his strength in his right hip has decreased drastically since his last visit in September.  He remained at about the same strength level as last time in other areas. 

The doc also measures his walking speed each visit.  He walks from point A to point B down a small stretch of hallway, and his time the last couple of visits has been in the 9 second range.  This time, it took him a bit longer to walk the same distance, about 11 seconds there and 10.3 seconds back.


Physical Therapy 

The doc was disappointed that Aless's last round of physical therapy didn't prove to be useful, meaning that he didn't come away from it feeling stronger.  But, he did learn a few exercises that he can easily do at home, which will help strengthen his core and in turn help his balance and strength.  His doctor stressed the importance of exercise to Alessandro and told him that he needs to find a way to do it regularly!  She recommended we find an indoor pool for him as she thinks it would greatly help strengthen his hip.

Gilenya Update 

His doc gave us a couple of updates about Gilenya, which is the oral medication that he is taking right now as his MS treatment.  It is the first FDA approved oral medicine for MS treatment, and he was happy to try it out after giving himself injections for the several years prior.  He has been on Gilenya for 9 months.  The doc said there are currently 30,000 people in the US taking Gilenya, and there has been one reported death.  However, in Europe, there have been 11 reported deaths, which was alarming to her.  At a recent meeting with the drug company, she was  informed that the circumstances surrounding the deaths of the 11 Europeans do not seem to be directly related to their Gilenya usage, but that final reports are still pending.  As of now, she did not find it necessary to take him, or any of her other patients, off of Gilenya.  But the doc and her colleagues are working very closely with the drug company to keep a close eye on these developments. 

Overall, his doc was happy that he hasn't had any major setbacks in this past year.  It has been the first year without any need for steroid treatments, and that is a big deal!  Woot, woot!

His next MRI is scheduled in a couple of weeks and the docs will review the scans to see if he has any new lesions or activity going on in that noggin of his.

So what does all of this mean for us?  

My post-doctor visit to do list: 
  1. Find a convenient and inexpensive indoor pool.
  2. Once we find a pool, make Alessandro use it regularly.  (4 days a week).
  3. Make Alessandro do his floor exercises regularly.  (4 days a week).
    • One way that I plan on getting Alessandro to exercise regularly is to make him eat and drink properly.  He tends to eat no breakfast, a lunch at about 2pm and then is starving by the time he gets home from work at around 6pm.  This means that he wants to eat dinner before exercising, which then means that after he eats dinner he's too stuffed/comfortable to be bothered with exercise.  So, my thought is that if I can get him to eat breakfast daily, a small pre-lunch snack, lunch, and then a snack at about 4pm, he will have energy throughout the day, and will have enough energy when he gets home to exercise before needing dinner. 
Alessandro's post-doctor visit to do list: 
  1. Swim regularly. 
  2. Do floor exercises regularly. 
  3. Eat and drink like a normal person.  (3 small meals with snacks in between + water, water, water).
Questions for you:
  1. Does anyone know where I can find an indoor pool in the area (besides the YMCA)?  
  2. For you people out there that exercise regularly, do you find it easier to exercise in the mornings or after work?  Do you find that it helps to exercise an hour or two after eating a meal or a snack?  Or not really?
  3. Any other tips/advice/suggestions for us?

Up Next:  Stay tuned for an upcoming "Fitness With Alessandro" segment.  I already have the pics and the videos people!  Here's a sneak peek. 



Wow.  

1.26.2012

Dinner in the D: El Rancho

My family has been going to El Rancho for years, but for some reason I hadn't been there in quite some time...until recently.

Alessandro and I ended up at El Rancho for lunch the other day, and it quickly became our favorite Mexican spot.  

The chips and salsa are exceptionally good.  The salsa was strong and flavorful, and was not overly tomato-y as some restaurant salsas can be.  Alessandro typically would never eat mild salsa at restaurants, but this mild was so good that he may have actually preferred it over the hot. 

We were surprised to find out that our lunch came with soup.  The soup had a vegetable broth and was filled with seasoned ground beef.  It was an unexpected treat.  After the chips, salsa and soup, we were really full.  But then our food came.  

I had the Flautas Norteñas, which are flautas (stuffed, deep-fried corn tortillas) topped with tomatillo sauce.  


Alessandro had the Carne de Puerco con Chile Verde, which was tender chunks of pork in a green Mexican sauce. 


I liked my meal a lot, but was in love with Alessandro's dish; and wouldn't you know it, he couldn't get enough of my flautas. 

So, we went back a week later for dinner with our friends, Dani and Craig (of whom you have read about before here, and here).  Here's what my email to Dani said:  "We were going to eat dinner at El Rancho...our new favorite Mexican restaurant just outside of Mexican Town around 7:30.  If you are interested in making the drive, we'd love to have you!"  Some may say it was too quick to call El Rancho our favorite Mexican Restaurant after only one visit there (for me, in the past 10 years, for Alessandro, ever), but some didn't taste that pork dish.

So I ordered the Carne de Puerco and Alessandro ordered the Flautas Norteñas, and all was well with the world.  Dani got the Enchiladas Suizas, which are enchiladas topped with tomatillo sauce, and Craig got chicken tacos.  They both loved their meals too!  (And they're a picky bunch, so you know it must have been good). 

And now, here's Danielle's #1 tip for eating out at Mexican restaurants:  Always order sour cream on the side for reheating purposes.  

See, we knew we invited her along for something!  (Except she didn't tell us that until after we ordered).

What is your favorite Mexican restaurant in the D?  Or maybe you prefer a taco truck?  

1.24.2012

"Don't forget to bring a towel." - Towelie

Alessandro doesn't do laundry.  But, he does help me fold when I'm done with the laundry.  Sort of.  His technique is more:  sort undergarments and socks into piles until the wife is done with folding the hard stuff so that she can start putting away the socks and undergarments

So I was very surprised when Alessandro took an interest in towel folding.  One day, he said to me, "I learned how to fold towels today.  You've been doing it all wrong."  

Apparently he looked it up online, and I admit, he folds a good towel.  I had to take a picture. 


P.S.  This happened in November, and he hasn't folded a towel since.

1.12.2012

Belle Isle in the Winter

My Aunt Lu-Lu is a trooper.  You can find her working out on Belle Isle in all sorts of weather--rain, snow, wind, sun, doesn't matter.  She loves the island, and lovingly refers to it as "My island."  So in taking advantage of the unseemly nice weather that we've been having lately in the D, I asked her if I could tag along with her on her next outing.  The next day, we found ourselves on the island. 

We had the entire place to ourselves and it was pretty cool.  We power walked the length of the island--about 5 miles--and took a few pics.  

Belle Isle is filled with such beauty.  The golden weeping willow trees, the lakes, the swans and ducks, the skyline, it is all such fun scenery that made my workout seem like two hours of sight seeing. 





















I told you my Aunt is a trooper--she was wearing a weight vest and strap on weights over her gloves.  She's climbing the Ren Cen in March--70 flights of stairs--to benefit the American Lung Association, and has registered for just about every other upcoming local run you've heard of.  She even participated in the Belle Isle fun run this past New Year's Eve. 

Meanwhile, my butt is super sore from walking those 5 miles. 

When is the last time you've been to Belle Isle?   And did you know that the same man who designed Central Park in NYC designed Belle Isle?  And that Belle Isle is larger than Central Park? 

1.05.2012

An Interview with Alessandro

He was surfing the net after dinner.  I sat on the couch with my pen and legal pad and said, “Are you up for being interviewed tonight?”   

“Excuse me?"  He looks up and sees that I'm serious.  "No, not really.”  

 “Okay, but we’ll do it anyway, k?  You’re never going to be up for it so we might as well just do it now.”   

"I guess.”   

“So can I go ahead with my first question?”   

Long pause, then he replies, “Hey, I think we should open up a new savings account.”   

Me, not willing to change the subject,“So, first question:  do I ever annoy you?”   

“Sure.  When you interview me about stuff.”  




What’s the most difficult part about living with MS?
Not being able to walk.  Kind of inconvenient.

There’s a lot about MS that people don’t know about.  What are some of the things about your disease in particular, since every case of MS is different, that your friends and family may not know?
  • Heat is my kryptonite.  Any relief from heat is like a power-up on Super Mario Brothers.  Like getting in a cold pool in the summer, it’s a complete recharge. 
  • I wear a toe separator daily because my toes clench up and it's hard to walk around on curled up toes.
  • I've been constipated for 4 years.  Try that on for size.  You can quote me on that.  You can print that.  [Laughing].  Which also has its benefits:  you use less toilet paper.
  • I get fatigued very easily.  I'm tired frequently throughout the day.  I could take a nap at any second of the day. Except for at night when I want to sleep.  I go months at a time without sleeping through the night.
  • I hurt myself every time I get into the shower.  I can’t lift my leg up and over the bathtub, so I slam my shin into it every time. 
  • It’s also difficult for me to climb in and out of bed because I can’t lift my legs up.
  • I use a cane on a daily basis, I use a walker sometimesthat’s very newand I use a wheelchair for long-distance things that would be impossible for me to do otherwise—like exploring New York during our vacation.
  • I don’t have much balance.  Even when just standing still.  I could fall over with a strong gust of wind…which is where my walker comes in handy. 
  • I take 7 pills a day. 
  • And I just can’t go somewhere spontaneously.  There’s a lot to think about beforehand—like where’s the nearest restroom?  Will there be stairs?  Is it worth expending all of that energy?  You have to think ahead.

Why don't you sleep through the night? 
Because I wake up to use the restroom.  Four different times.  An interrupted sleep is not a restful one.

Other than your trouble with walking, what are one or two other symptoms that are the most bothersome? 
Having to go to the bathroom frequently.  And twitching.

For those that don’t know, explain a little more about your bathroom and twitching problems.  
My brain just doesn't communicate smoothly with my bladder, so it doesn't empty fully, or quickly, and the process just doesn't work like it's supposed to.  And the twitching and muscle spasms are caused because the myelin (insulation) on my nerves is frayed.  It’s like a sparking or frayed wire, which causes my legs to twitch and spasm.  During inconvenient times.  Like when I’m trying to sleep.  

What’s the best part about having MS?  If there is any? 
It gives me perspective on life.  It helps me to empathize with people and to learn to put myself in other people's shoes.  And it has helped me to become more patient, since I am literally forced to go slower.

What are some daily tasks that you dread? 
Walking to and from the car.  Walking anywhere, actually.  Handling sharp objects or hot items in the kitchen.

Do you dread tasks like getting dressed, or getting in the shower?  
No, I've gotten over that.

So mostly the big things then?
Yeah.  Also walking from the couch to the stereo to turn it off, that’s hard because there’s nothing to hold on to.  In general I also dread doing anything out of my comfort zone...anything that would throw me off.  I have a routine, for example, always using the bathroom right before I leave the house, and I feel more comfortable going through those routines.  I like to know what I'm going to do and anything that would put me off my course is problematic.  I need to know what's in front of me.

Do you think that people have a good idea about the daily struggles you go through?  
No.  It's an accomplishment every day that I get up and live my life.  Everything I dogoing to work, coming back, getting back up to the apartment is a huge accomplishment for me.  Including small tasks that you'd otherwise take for granted.  Like, I think about falling when I'm brushing my teeth or with a Q-tip in my ear.

A Q-tip?  Seriously? 
Yeah.  Seriously.  And preparing food for myself is a struggle.  Walking back and forth from the stove to the fridge or counter, carrying ingredients, with the ever-present thought of falling with food, or with hot stuff and sharp objects.

For those of us without MS, is there a way you can describe what you feel like physically so that we can try to imagine how you feel? 
As far as the walking, I think I've pinned it down to comparing it to trying to walk around with cement blocks on your feet that never come off.  And you have to go the bathroom—fast—but you've got these cement blocks on your feet.  Also, just in general, picture your body not responding to anything that you tell it to do.

If there is one thing you could do on a daily basis that you can’t do now because of your MS, and one thing in general you could do, what would it be? 
A daily thing would be, I would run.  Even though I hate running.

And even though we hate runners?
Yeah.  [We don't actually hate runners, we're just jealous of them].

What about a one time thing?
Learn to surf.

Cause you love the ocean?
Yeah. 

What can others do to make life easier for you?
I never mind when people open doors for me.  Don't ask me what's the matter with my leg though.

Yeah, but isn't that just a human reaction of curiosity?  Isn't that your opportunity to educate people and raise awareness about MS?
Yeah. But I don't always feel like doing that.

Okay, what else? 
Don't feel sorry for me, don't treat me any different.  Don't ask me if I want a piggy back ride.  I know people are trying to help move me, but literally the logistics of the piggy back ride don't make sense for me. I can't jump to get on your back, my legs don't bend to wrap around you, my legs just hang there. It doesn't feel good. It's annoying.

We know you are affected physically by MS, but do you feel the effects of MS emotionally or mentally as well? 
Well, not being able to walk kind of messes with your head.  That’s a big thing to wrap your head around. Also, people stare at me, and not just because I’m really really really good looking.

How do you feel when people stare at you?
I can’t blame them.  You see somebody walking around funny like Frankenstein, as I've been told, you think, “that sucks” or “that's weird.”  It's just human nature.

Have you felt that MS has held you back from accomplishing anything these past 4 ½ years since you’ve been diagnosed? 
I've wanted to swim in the ocean the couple of times we've been at the ocean, but haven’t been able to cause my legs won’t move.  But with your help at least I've been able to get into the ocean.  I don’t like not being able to go on walks with you or riding bikes with you.  

So mostly physical things?
Yeah. Being a little restricted at events, concerts, baseball games.  Even though we've turned that into a good thing with handicap seating.

Are you happy?   
Probably happier than I’ve ever been.  No, definitely happier than I've ever been.

How do you manage to be so happy despite all of the obstacles you face daily? 
Mostly the weed.  Joking.  Obviously because of you.  You not letting me be defeated or down.  And just being able to appreciate all of the good things that I do have that make not being able to walk seem minor.

There is a real connection between MS and depression, like any other illness.  Are you depressed or have you ever been?
No, I get frustrated.  Looking back, early on, maybe I was.  I don't necessarily know, but I know mentally and emotionally I'm in a much better place than I was early on in my diagnosis.  I don't know how much going through chemo had to do with that.  I think it did have to do with getting chemo and how poorly I felt from that.  And how up and down I had been physically.

What was the hardest thing about chemo?
Feeling like shit all the time. You just felt terrible.

Any good things about chemo?
I felt fraudulent going into the hospital for my treatments because you're surrounded by people who are literally dying; and I'm just in there because, “oh, I can't walk that good.”  It's humbling.  Once again, it makes you see there are a lot of people in the world suffering and some of those people don't have any support.  It makes you think that you have it pretty good.

Have you ever felt angry or resentful that you were dealt this hand in life?   
I was pretty angry for a while.  The first couple of years.  I suppose I was angry at God and didn’t ever want to go to church. 

What about now?
I think I've reached the point of acceptance.  There's no point in being angry; it's a lot more fun to be happy.

Do you feel that you have a relationship with God now?
Yeah.  I mean, I think I always had before, but I've rekindled that romance.  [Laughing]. One time, two times, three times my Savior.  [South Park reference].

How has MS affected our marriage, if you think it has at all?
I feel a lot of guilt.  To be honest, it's as much your disease as it is mine.  I feel like I hold you back in doing things. At the same time, I feel like we've been through a lot of difficult things together and I know I can count on you for anything.  We have more of an intimacy.  I feel like we've become closer because of it.  I feel bad because you've sacrificed for me.  You spent your days at chemo with me when you should have been studying.

Do you ever feel like you ever use MS as an excuse not to do something you just plain don't want to do?  
My philosophy is that I don't ever want to say, "I can't," but I know I haven't necessarily followed through with that.  But I always keep that in my mind.  And that's something that I'm always working on.  There is one thingmaybe with Saverio—sometimes I’ll tell him I can't go solve a mystery with him because I can’t walk, but maybe, maybe, if I dug down I could muster up some energy and make it.  But you know I'm trying to live my life by my favorite quote, “A ship in harbor is safe, but that is not what ships are built for.”  But it took a long time to get here.  In the past I might not even try.

Is it easier or harder for you now to cope with your disease than it was when you were first diagnosed?   
Easier.

Even though you're worse off physically now than you were then?
Yeah.  Maybe because you know now that you're gong to struggle and you lessen your expectations. You just learn how to cope. It's not as new; it's frustration but you just get used to it and adapt.

What are your biggest fears related to MS? 
Falling down in front of a moving car and getting run over.  Falling while holding a knife.  Dropping boiling water on myself.  Remember the hot gravy incident?  And hitting my head on cement during a fall.

Do you fall frequently?
Lately I’ve had a couple more falls than usual.

Are you ever scared that one day you'll be wheelchair bound?
No.  Because I had four years to think about that possibility and since I already have a wheelchair for stuff, it's something that you prepare yourself for.  At this point I'm not going to think that I'm going to end up in a wheelchair.  I'm going to hope that I don't.  It's not a fact that it will happen.  It's possible, probably probable, but not a fact.

What are your hopes and dreams?
I'd like to go on some fun adventurous vacations with you.  Anywhere with a beach, more baseball road trips, Napa Valley.  I'd like to just live a fun life.  

Is there anything that you have accomplished in the 4+ years since your diagnosis that you may not have thought possible? 
I got married.  And went on an epic baseball stadium road trip.  And swam in the ocean...kind of.  Kind of.

Am I annoying you now?
No.  I love you.
 
Alessandro was diagnosed with Multiple Sclerosis in August 2007…two years after we met and 1 year, 364 days after I knew I would marry him.  This is the first of what I hope will be several blog posts, which will touch upon his life with MS and the trials, tribulations and triumphs that come along with it.  We’ve got lots of ideas and stories to tell…it’s just a matter of organizing our thoughts.  Thanks for anyone who reads and who is interested in our story.