Great advice for dealing with people on social media
Deal the Deck
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I came back from Boston Wicked Smaaht
Ok that’s not even a little bit true, I’m still the same dumb ass I was before I went on the trip, BUT I did learn ALOT (good and bad). It was definitely an adventure…..
If you’ve got some time I would like to tell you about it…..well about getting there and our first day in the city.
SOMETIMES the weather forecast is right
Before we left, I had been half listening to the forecast. The forecasters said that we would be ‘blessed’ with a wintry mix of snow, sleet, and rain and temps of 26 degrees beginning 2 hours before we were to head out for the airport. After sleeping 3 hours, I woke up at 1 am, showered, coffeed, and looked out the window. Of course they picked THIS time to be correct….smh
We left Einstein’s house at 2 am, and headed to my house to pick Thing 2 up. She was driving us to the airport. (well I was driving us to the airport, and she was taking my car home) That 20 minute drive took almost an hour….grrrrr
ok MORE coffee….(the American Airlines app, I downloaded on my phone said the flight was still on time, so we were doing this) Driving to the airport sucked, since everyone forgets how to drive in the winter. (It’s not like we haven’t had a long enough winter for people to relearn) smh AGAIN.
When we got to the airport, Thing 2 ran in and grabbed a wheelchair for me. I NEVER thought, I would be so grateful to have one.
(Our trip hadn’t even started and I was completely exhausted.)
I won’t claim that it was perfect, but since I know the rating system affects the person driving the wheelchair directly, (he really was a nice guy) I did give the experience a perfect 😀 score on the “she has been delivered” tablet you have to sign when you are dropped off at your gate.
Security was a breeze
I probably shouldn’t say this, but the “trick” to getting through security quickly is having a bag of pee strapped to your leg. The poor girl that had to do my pat down apologized so many times about having to “feel me up” and couldn’t comprehend what a foley catheter was, I don’t think she even noticed or swabbed the great stuff on my hands. In hindsight, it is really scary that the people that are supposed to be providing our security are so afraid of “offending” someone, that they “overlook” certain things. I hope I am wrong and they tested me some other way without my realizing it. I assure you I will not be complaining to them.
Clear skies
Boarding the plane was also a breeze. I did get a little nervous when the person sitting next to me started coughing, (Oh no, not the plague again) but for supposedly being a full flight, she was able to move to another seat closer to other family members. YAH ME!! In fact, both seats next to me were empty!!!! Double Win! I took off my leather bomber jacket, used it as a pillow, used my sweatshirt as a blanket, and I was out. 🙂 I woke up a couple hours later in Boston, not quite fully rested, but refreshed nonetheless.
The airline had a wheelchair waiting for me as I deboarded the plane. I didn’t get a picture of the woman driving (though I should have since she was also the one who helped me reboard on the way home and she was SO HELPFUL) After taking us to the baggage claim area for my companions suitcase, I explained that “according to my research” we were supposed to take the SL to the blue line and I needed to buy a ticket somehow. “Oh no honey, you don’t need to buy a ticket, it’s all free”, she said. Huh? Nothing in life is free.
There are still some free things in the world
Transportation FROM the airport is free via the Silver Line and the Subway (as long as you don’t leave the station). Who knew?!?! 
We boarded the SL1 which is an electric/gas powered bus. It was electric leaving the airport, then temporarily shuts off to restart and run on gasoline…..WHAT?!?!? Don’t laugh, I really had no idea such a thing existed….
We rode the SL to the end of the line and then tried to figure out which direction we needed to head on the blue line to get to our destination.
I must really have the “damsel in distress” look, because people were constantly coming up to me offering to provide help or direction. A man and a woman (not a couple) even debated with each other which way would be easier. The man said we should take this route…the woman directed her eyes to my cane and suggested that MAYBE, the orange line would be a better choice. Orange line it is!.. The announcement said the the orange line would be approaching on the center platform….
Look BEFORE you leap
I heard “center platform” and crossed the tracks to head that way. No I did not notice the train that was heading directly for me before I stepped onto the tracks. Talk about your life flashing before your eyes….HOLY SHIT….(yah for the foley cath, since I think I would have pissed my pants without it). No I didn’t get hit by the train, but I didn’t escape unscathed either.
Wait there is more….
So now I am standing on one side of the platform, my companions on the other. The orange line pulls up and we need to be on that train, but how to communicate that? I am using hand signals through the glass trying to tell them to get on the train as I proceed to board. Once on the train, I don’t see them….Oh shit should I get off?!?!? I try to step off the other side of the train to see if they are still on the platform, only to get my feet caught up in my suitcase or the cane and down I went. 20 minutes in Boston and I wipe out. The upper part of my body is on the train, but my legs are hanging out the door and I can’t pull them up.
I really am a train wreck (pun intended)
For the first time in my life, I am grateful that people don’t mind their own business. Someone pulled me into the train car just as my companions found me. How the hell have I survived 44 years on this planet?!? Have I mentioned GRACEful I am not?!?!
I’m not done yet though…. not with my life or with this story….
We did make it to the apartment we were staying at to drop off our bags without any further mishaps.
We also found a great little pizza place. 
While we were eating we decided our next stop would be the Prudential Skywalk.
The UBER app can kiss my ass
Believe it or not, I did listen to the advice I was given before leaving that uber was the easiest way to get around while we were there, so I downloaded it to my phone before leaving. After my “near death experiences” from the morning, I thought MAYBE now was the time to actually use it. The app had other ideas.
OH come on!!!!!!!!! WTF?!?!? How can it be disabled, I have never even used it before?!?!? Visiting the website they sent me too was no help either…. Ok so back to the train…. If at first you don’t succeed try try again? In fact I was more determined than ever to figure this “whole public transportation” thing out. When we got back to the train station, I took a picture of the map (schedules had changed effective April 1st and new ones weren’t available yet?!?!) I made a “new friend” who suggested that we buy a one day charlie card which would allow us unlimited use of the buses and trains throughout the city for 24 hours.
By the end of the first day, I was cold, tired, and completely worn the hell out…. but I CAN boast that I have become quite proficient at using the MBTA. ( I still think that using a horse would have been easier)
IT RAINED ALL DAY!!!!!! (at least it wasn’t snow though)
I took a selfie before crashing for the night. I don’t know that I will claim damsel in distress, but definitely helpless, homeless, or in someone in need of assistance.
I’m not sure if I made an impression on Boston, but after one day, it certainly left an impression on me.
I will write more about our trip later this week, not only did I come back from Boston with a semblance of a silly accent, but I also picked up a scratchy voice and fever 😦
“Running” from Anxiety
I’m starting to think that trying to run from anxiety doesn’t work. I thought I was done packing, my suitcase is totally crammed, yet anxiety has still found me and is trying to find a place amongst my trip. YOU CAN’T COME WITH YOU CRAZY BITCH!!!!!!! (anxiety)
I woke up this morning after my Tysabri infusion (recharge) yesterday feeling great. My suitcase has been packed for two days. I even had the forethought to wear both a hooded sweatshirt AND my leather bomber on the plane to “save space” in my suitcase (did I mention my suitcase is REALLY REALLY packed?)
For some reason, BEFORE I leave for a trip I have to clean my house entirely. This includes floor washing, laundry completed, all garbage cans emptied, and all projects “put away”. While most of the new tub was installed last week, I still had some caulking and “void filling” to do from where the old tub was. So since the housework was done, why not “knock that out” too?
There is NOTHING GREAT about “Great Stuff”
That shit is Evil! and now….. it is Everywhere….including my hands. Normally this wouldn’t really bother me much, it will wear off and where the hell am I going that someone is going to examine my hands….. and then it occurred to me……
When I have my “pat down” at security tomorrow morning, they are also going to swab my hands to test for something. I still never bothered to ask what they are testing for, I just know that they are going to test. (I assume bomb making chemicals or something) It’s never been an issue, so I just let them do their thing. BUT, I probably shouldn’t put pure acetone on my hands, or paint thinner, or gasoline…etc etc… How the hell do I get this off?!?!? OMG what if “GREAT STUFF” has the chemicals in it that will make it look like I made a bomb?!?!? I thought about googling it, but then worried that I would be red flagged for googling such a thing before getting on a flight (hell writing this post may be the only red flag they think they need)
Yes I do realize that I have absolutely NO CONTROL about what will happen tomorrow. What’s done is done. But it took me two hours (and a beer) to calm down enough to put things in perspective. I HATE ANXIETY!!!!!
While in panic mode, I called the airline to make sure they knew I needed a wheelchair and I searched for a blog that Damn Girl Get your shit together wrote a couple of weeks ago about What to do when you are freaking the fuck out. While rereading her post, I also remember commenting on it, but couldn’t remember what I had said other than “Yep, I need to do that”, so I searched for my comment and reread it. I meant what I said about putting things in perspective, but I had forgotten. As I was thinking, I also remembered that I have survived worse, and my breathing finally started to slow down.
I think the real problem is that I try to CONTROL too many things. So what if they question me at security? Worse case scenario, I have a great story to tell in the future. I already know that it takes me longer to get through security than most people and have planned to allow extra time. My flight leaves at 6 am, we will be there at 4 am, and what happens will happen.
Three friends have texted me that Chicago is “getting hit” with a wintry mix of snow/rain/ and freezing temperatures tonight. Ok, so maybe I have to leave my house a bit earlier than 2:30 am? (this won’t be the first time I have had to spend the first 8 hours of my trip sleeping) More on that trip another time though.
One beer, has now turned into three, and I need to finish making dinner for my traveling companions who should be here soon. See you all in a week!!!!!
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?
SO. DAMN. PROUD!
If I told you that I don’t worry about my daughter, you would probably think that I was a monster, but I don’t. I honestly, don’t “Worry” about her at all. Now LOVE her?. That is a completely different story! Of Course I do!!!
TO THE ENDS OF THE UNIVERSE and then some.
Have you ever gone to a wedding and felt like YOU were the guest of honor? (Your own wedding doesn’t count) I’m still not sure HOW she pulled it off, but I think everyone who was there that day will agree that it was an honor to be included in HER DAY.
I think I have to try to “stick to the facts” when I talk about Thing One’s Wedding. My usual words like Fuck, Shit, and Damn have no place in this story, …..yet WONDERFUL, MAGICAL, FAIRYTALE, and PERFECT, really don’t scratch the surface. To say I am Proud would be an understatement. Honored seems hollow, however, MY HEART IS FULL!!!
Friday, March 9, 2018
Einstein and I arrived at Thing One, and her fiancee’s house at 10 am. The hotel and venue were two hours away, and we told Thing One that we would be her “beck and call people” for the day. “Just tell us what you need kiddo, and it’s done.”
She handed me the schedule for the next day to look over, and the book that would be used to hold the officiant’s notes for the ceremony, asking me to remove the sticker from the cover. Truly, trying to get that damn sticker off with fake nails was the most difficult thing I had to do. I called the hotel, and asked if we could check in early because we were so ahead of schedule. The coordinator said, “Yes we have yours and your daughter’s room’s ready, Come on in.”
Because so many people were coming from out of town, Thing One had reserved a block of 25 rooms for her guests. She didn’t tell us that she had used hotel points to upgrade us to a suite. Believe it or not, our suite was not even half the size of the kids suite!!!
The guys made quick work of unloading the cars, and then the four of us went to lunch at the hotel’s restaurant while we waited for the venue to open so we could start decorating.
We ate lunch, drove the mile to the venue, and began carrying the totes full of decorations inside. When we opened the doors to the banquet room, everything froze. I looked at my daughter’s face as she saw that The Banquet hall had not even begun cleaning up from prior evenings event. It only took ONEtear rolling down my daughter’s cheek for me to launch into Lieutenant mode.
Wait a minute Grace, I thought you said EVERYTHING was perfect?
No, I am not a masochist, but I am a “fixer”!!!!
FINALLY, something that I COULD DO to help!!!!!!
My daughter has her own army
The entire bridal party came to help clean and decorate. Within a couple hours, the hall was mostly decorated and we were able to begin the wedding rehearsal. I’ve never lead a rehearsal before, so it did take a couple of “run-throughs” before I got that part right. But all in all, it was ALOT of fun. We all left the venue and headed to a local pizza place for dinner. Hours of good food and company!
When the evening was over, Einstein and I were sitting in our room talking about how proud we were of Thing One and her fiancee. They are both incredibly strong, intelligent, and outgoing people. They have both put in a lot of hard work to achieve their dreams, and the love and respect they share for each other can be felt for miles. As we were getting ready to sleep…. Thing One texted me….
“Mommy, open your door?”
I looked at the clock, sure enough…… 11 O’ clock on the dot!!!!!
I know that I said I was going to stick to the facts and leave emotions out of this story, but here’s the thing… For as long as I can remember all of the “heartfelt, tearful, world changing” conversations that occur between THING ONE and I have always begun at 11 pm. Her choice, not mine. She had told me a couple days prior to this that she had a letter she wanted me to read at the rehearsal dinner. I gave her 10,000 excuses why we didn’t need to do THAT, and thought I had managed to avoid it. 
But here they were at 11 O Clock, using the word, “Mommy”…..
For all you sadists out there…..
Yes I read the letter. NO not on video. Yes I do cry and here is the picture to prove it…..
Saturday, March 10, 2018
The morning started with Breakfast in Thing One’s Room. The make up ladies, showed up to her room soon after.
Thing One, let me go first so I could make a “break for it” ( I don’t do good with a room full of girls being girls), no matter how nice they all are. I also do not sit still very well.
Thing One..BEAUTIFUL
So I got to go first and then was tasked with making sure everything was “Fixed” at the venue and making sure everyone was were they were supposed to be. YAH “busy work”.
I spent the next several hours running between our hotel rooms (the guys were in mine and Einstein’s suite and the ladies in Thing One’s) and the Venue. FTR I only knocked on the wrong room door one time 😛
I took pictures and video to “report back” that everything looked perfect… You tell me?
The 3d printed centerpieces and table numbers we made, turned out beautiful as well
As Five O’clock drew near, Thing Two helped Thing One with the finishing touches…
The Bridal party took the shuttle to the venue.
Einstein and I loaded Thing One AND her dress into the car and headed to the ceremony.
(I don’t have any pictures of this yet, but I will share some pictures that have been shared with me from the remainder of the evening below)
Now, I hope you can see why I can’t find the words to describe just how perfect the entire weekend was.
Dearest daughter of mine,
As I mentioned before, I do not worry about you. I don’t have to!!!! You are smart, beautiful, caring, determined and independent. You’ve Got this! You posted the picture that I used as a featured image on this page to your facebook page with a caption stating that I was the greatest woman you know. You wrote me a letter that made me cry. (and bought me an awesome “mother of the bride” coffee mug.) In your marriage, you have also given me a “son”. I am so sorry that I’m not good with words, but please believe me when I tell you…..
YOU are the Greatest Woman I know!!!! and having you as my daughter is the GREATEST GIFT of all!!!!
MS Graceful...NOT! 