Watch out Boston….Here I come

We “descend” on Boston at 9 am next Wednesday

When I started planning this trip in January, I had hoped to document and share any tools or tricks that I had learned to make traveling with MS easier, but then…..well you know, LIFE HAPPENED….. The last couple of months have been filled with so many life changing events, that I could barely make it through the present let alone write about it.

The week after I purchased our Airfare to Boston, I started investigating whether or not to rent a car while we were there.  The AAA  guide book I ordered says, and I quote….

Ralph Waldo Emerson once observed, “We say the cows laid out Boston.  Well, there are worse surveyors.”  Emerson, of course, never had to drive through the city.  Downtown- occupying a peninsula surrounded by the Charles River, Boston Inner Harbor and Fort Point Channel- is a challenging place for residents, let alone visitors, to negotiate by vehicle.  Furthermore, Boston drivers are legendary for their aggressiveness.

This kind of makes me wonder what AAA says about Chicago drivers.  (I am tempted to see if my picture appears somewhere as an example of aggressive.)

Ok, So we are NOT RENTING A CAR!!!.

Public Transportation or Uber.com?

A couple of people suggested using Uber.com for rides instead of relying on the MBTA.  “It’s just like taking a cab” they said.  (One person even offered that we would have less of a chance of sitting in CUM STAINS with Uber) EWWWWW!!!  I guess I should have mentioned that I have also never taken a cab before.  I grew up beyond the sticks- literally in the middle of nowhere.  Public transportation did not exist.  Remember the post about riding a horse on a subway?

I have to learn everything I can about everything, so after spending almost an hour on their website reading all the FAQ’s, I entered a “test” route to check rates.  The rate was almost $30.00!  I can drive this same distance in my car in 20 minutes and it only costs me $25.00 to fill my whole tank.  I was shocked!  People actually do this?!?!….ahhh but I guess you would have to pay for parking etc if you didn’t?!?!?   I am hoping the rates for Uber are cheaper in Boston, but just in case….

We decided to stay close to the Boston Convention Center, (the actual purpose of our trip).  I began to investigate hotels within walking distance of the convention center.  OUCH, just ouch!   A ” simple” google search “hotels near the Boston Convention Center” produced  1,060,000 results (0.87 seconds).  Of course I had to investigate them ALL…. Booking.com, Expedia, Orbitz, hotels.com, kayak to name a few.  I couldn’t find anything for less than $200.00 a night.   After a couple days of this, I stumbled on Airbnb.com.

What is Airbnb.com?

For those of you not familiar with Airbnb.com the explanation on wikipedia is here: What is Airbnb?, they also have pages and pages of FAQ’s on their website At first glance, I was a little intimidated by the thought of staying in a strangers house or apartment, so I just bookmarked the site to go back to .  I looked at hotels in other cities for cheaper prices, but they included an hour or more time on the train to and from Boston…… Ok staying at a strangers house it is……  Well a couple of different stranger’s houses, but I will have to write more about that later.

I have given both my kids names, addresses, contact information etc in case I get “lost”.  Can you think of anything I am forgetting?  Do you think Boston will leave an impression on me, or that I will leave an impression on Boston?

 

 

 

 

 

 

 

Air Travel with MS- Use the tools available!!!

I wrote earlier this week about planning my trip to Boston in April.  I made a joke about riding a horse on the subway, because humor (at least the attempt to be humorous) is how I deal with Anxiety.

I spent a couple days smh thinking that spending 17 hours in a car almost sounded better than a 2 hour flight.  No I am not a masochist!  What I am is ‘experienced’.  It’s sad to say, but dealing with people at the airport can be just as mentally and physically draining as making a 17 hour drive.  Often times, people are pushy, judgmental, and downright rude, especially to individuals with “invisible illnesses”.

In the past, I have let other people’s opinions, push me to try to handle more than I could.  I have fallen numerous times at the airport because I insisted on trying to “do everything myself”.  The LAST time I tried to go without assistance, I ended up falling and breaking my arm.  (Go big or go home?)  For some reason, I insist on learning things the hard way :(.   I didn’t have a choice about using a wheelchair on the way home after that.

I have requested wheelchair assistance each and every time I have flown after that, but it still stresses me out so much.  I HATE the stares I get because “I don’t look sick”.  I hate that because I become so uncomfortable, I think I make my companions uncomfortable.  I want this time to be different!  While I can’t control other people’s ignorance, I am determined to control my reactions to their ignorance.  If at first you don’t succeed try, try again?

So….This morning I put pen to paper (so to speak) to try to lessen my anxiety.  Here is what I came up with.

Requesting wheelchair assistance when you “don’t look sick’?

A Series of Hurdles

HURDLE #1

LOCATING a Wheelchair. When pulling up to the curb….there are police everywhere, hurry hurry get out of your car…. um I can’t... past experience has taught me that it is better to plant my ass right where it is while someone brings me a wheelchair.  I have notified the airline ahead of time that I need wheelchair assistance., but to be honest, they are usually not prepared.  So I will sit and wait.  After waiting 5 or 10 minutes (which will feel like an hour) for a wheelchair to be located.  I will stand up, take two steps to the wheelchair and sit down.  My bags will be handed to me and I will be ready for  the next hurdle.

HURDLE # 2

Now the staring and judgement begin.  (if it didn’t already when I took two whole steps).  100’s of eyeballs will be on me.  She doesn’t look sick, why is she using a wheelchair?  She must just be lazy etc etc etc.  I can literally feel the eyeballs combing every inch of my body looking for some outward sign that I have a disability.  (after experiencing this so many times, is it any wonder I no longer possess even a shred of modesty?)

Hurdle #3

Getting in line to check in.  While I am going to do the online check in thing, and print our boarding passes before we leave for the airport, for one reason or another, I often end up having to go to customer service.  The biggest hurdle that this poses is additional time,  (gone are the days of arriving at the airport 20 minutes before your flight leaves) but OK,  ALLOW Extra time….CHECK!

Hurdle #4-

Now to navigate the airport.  I used to ask my friends, kids, etc to push the wheelchair through the airport because I felt selfish asking an employee for help when there might be someone that needed it more, But people do not pay attention to wheelchairs. So many are busy dealing with their own stresses, they do not realize that they are standing right in the middle of a walkway. (Someone tried to yell at my daughter once for running into her even though she was the one that walked right into me, and even dropped her water in my lap….yeah that didn’t go so well) So now I let the airline personnel do the “driving”.  I have learned that there are fewer confrontations and angry words this way.navigating the airport

As I began writing this today, I remembered reading a fellow “mser’s” blog about Traveling with MS as a companion, so I paused to look for it.  I’m glad I did, his words about trying to navigate an airport with balance issues summarized it better than I could.  In his blog he says,

 “You see, people inside an airport are clueless. They wander around, either looking at their phones, looking for their gates, looking for something to eat, somewhere to sit, or rushing through the crowd like a running back picking a hole to run through, and they are all oblivious to who or what is in front of them, in back of them, or around them. That is not a good feeling for someone with balance issues, so I simply steered to one side of the terminal and stopped or slowed down when someone threatened to invade my orbit, using my cane to secure my space if necessary. It felt like walking through a mine field.”

He is absolutely correct.  I DO NOT need that headache. Here is the link to the full blog post, if you would like to read the entire thing.  I recommend it! (hint hint)

Hurdle #5 Dealing with the Dreaded Airport Security- or TSA agents

To some, calling someone “a TSA agent” could be a worse insult than calling them an “Asshole”, maybe they are synonyms?  Even though I know these agents are there for our protection, most people see them as another hurdle.  For me though, even though very time consuming, this is the least stressful part of the whole airport experience.  The last time I  tried to go through security the “normal way”, they asked told me to STAND STILL in the full body scanner….lol me stand still?!?!?  Yeah right!!! I tried 3x and kept touching the inside of the machine (balance issues).

I did almost accomplish this ONE time, but still had to go through a pat down because they questioned the bag of pee strapped to my calf.  (More about that another time though)  So now I just request a pat down.  The fact that I have been “delivered in a wheelchair” saves time answering questions.

If you really think about it, the pat downs really aren’t so bad.  I assure you the agents that have to do them are way more uncomfortable than you will ever be and it is for your protection.  ( In today’s society with all of the lawsuits and people that are so easily offended, I would be terrified of losing my job every time I was forced to touch someone)

TSA notification cardI found this card this morning while checking out TSA’s website.  Maybe it’s helpful?  I might print it and take it with, but I assume it’s just as easy to request a pat down.  The site is interesting enough if you have time to check it out.

Okay pat down complete now to find the gate.  (I really should stop asking the agents for a kiss when they are done….I’m sure they have heard that joke one too many times)

Getting to the gate is relatively easy, if the agents are doing the driving.  Then its just a matter of waiting.  I anticipate a few more angry stares when I get out of the wheelchair and WALK to the bathroom.  (even more if I stand facing the toilet in a woman’s bathroom to  drain the catheter bag)  A few more when the airline “let’s” me board with woman and small children…… but really who’s problem is that?

^^^^ took me two days to write.  As I did, my anxiety about the upcoming trip “melted away”.  I typed, I cut, I typed again….etc etc.  I reread my own words numerous times.  The only question I have left, is “Why do I care so much, what other people think?”  I tell people all the time “you do you”.  Maybe it’s time I listened to my own advice?

Can you ride a horse on a subway?

Planning My Next Adventure

I am going to Boston for 4 days in April…..You call that an adventure?  YES I DO! But, The adventure I am speaking about now though is the PLANNING part.  I am excited, nervous, and to be honest, a little bit scared.  You see…. I know how to ride a horse, but not a subway, or even a bus for that matter….So there you have it….Country girl meets Big City?  Not that I have never been to a Big City, but it is something I try to avoid since being diagnosed with MS.  When I do go to Chicago now, it is only to see my “MS Specialist”, at the same place, taking the same route that I have taken numerous times a year for the last 7 years.  I drive my own car, and use the valet parking at the hospital (yah discount because I have a handicap placard? …. If you call $13.25 for an hour a discount….smh)  I have that routine down pat.  But a new city where I don’t know my way around?  The fact that I have continuously heard that Boston is the “Walking City” makes me a bit nervous.

Anyone up for a road trip?

On New Year’s Eve, Einstein and I had his best friend and his wife over to celebrate.  Us girls, were making small talk in the kitchen while the guys played “Kung Fu Jenga” in the Living Room.  “K” was telling me about a “you-tube” conference that her daughter wanted to go to in Boston during the month of April, but she was a bit nervous (also not liking big cities), and not knowing much about You-Tube.  I told her, I thought it sounded like fun!!!!  (I want to learn more about making videos for You-tube, I love meeting new people, and YAH ROAD TRIP!!!!)  She asked me if I wanted to go……. UM HELL YAH!!!!!!!!!!!

As the excitement built in the kitchen, the guys came in to see what we were making such a fuss about. We told them that we were planning a road trip to Boston. Before the night was over, it was decided that we would take my car, they would pay for gas and the hotel.  I just had to “get the girls there and back in one piece” .”D” (Einstein’s best friend even offered to throw in a lobster dinner)  DEAL!!!!!!

Let the adventure begin.

I spent the next week trying to plan the best route and times to travel.  If we drove 10 hours the first night, we could make it to Niagara Falls, New York, get a hotel, crash for the night, see the Falls in the morning, AND still make it to Boston Thursday evening in time to get rested for the big conference the next day.  We could do the conference on Friday, lobster dinner that evening, and head home on Saturday morning.  Easy peasy right?  HAHAHAHAHAHAHAHAHAHAHA  Who the hell was I kidding?

INTRODUCING LIFE WITH MS

Now the doubt, insecurity, and anxiety come in (another invisible symptom of MS). It’s NOT that I COULDN’T do it, it is more that I shouldn’t do it.  I fucking HATE MS!  If I spend that much time in a car, my body is going to be in SO much pain for at least a week afterwards. (How could I have forgotten this after last year’s 15 hour road trip to see my niece get married?!?!?)  I ended up in the hospital on steroids for a flare up, and another new symptom…Sciatica.

Traveling with Multiple Sclerosis

What if the car breaks down?  It’s not like I can WALK for help.  What if I fall?  Will my insurance cover me for an accident in Boston?  and so on and so on…

Ok pity party over. Ok Grace you’re scared so what? MAKE IT HAPPEN!!! Did I mention I am not Dead yet?  I also am NOT going to let MS make me feel like I am.  I may have to make some adjustments, but this is going to happen!!!

Back to the drawing board.  Yah determination!!!!  Just for the hell of it, I decided to see what it would cost to fly in comparison to driving.  After adjusting our dates and times a bit, I was able to find round-trip airfare for $136.00 a person.  NOT bad at all!  Obviously it isn’t first class, but sitting uncomfortably for a couple hours on a flight sure as hell beats 17 hours of it. First hurdle handled!

I have no clue how I am going to navigate my way around Boston without my car, but I’m up for it.   I still have a few months before we leave, so plenty of time to research and you guessed it…..BLOG about it….. Challenge Accepted!

If anyone has any tips or tricks, or must see things in Boston please let me know!!!