Whew! I finally have some time to type. It’s been a little bit of a crazy week, but now I should be able to chat.
Hi, how are you?
Ok, on Tuesday we left the house at 5 to get to Reagan Airport in time to get through security. (Thank you Mom for watching our kids all day!) And, leaving at 5 seems good, right? Uhm… we still haven’t figure out if we need an EZpass for 66 inside the beltway or not, if we have HOV2. I’m going to get one for next time as a “just in case” thing.
Also, TSA known traveler program is totally worth it! We parked on the 1st deck of the garage, then whizzed through security. They didn’t ask about my leg brace which I was wearing on the outside of my jeans. 10 minutes, tops. Then, an important thing – I ate a bagel with cream cheese, around 610. Mel had a coffee. And we were off. Seriously, this part of the trip was easy (aside from noticing how many people wear uncomfortable shoes to fly. Stilettos? Platforms?? Those long elf shoes that men wear to pretend they have big feet to compensate??? Why would you wear them on a PLANE?)
Landing in Boston was cool – it was a clear day so we saw the coastline, the landscape, the sunrise. And the flight was quick! We landed around 9ish, caught the shuttle to rental cars… and things got weird.
Group of clerks answering their personal phones at the car counter? Yeah, ok… Do we want additional coverage? No, no thanks. Gas – do you want to get it yourself or prepay? Prepay? $50. Check. Bye! Our inexpensive Ford Escape turned into Corvette prices! And ironically the service on this beautiful day was worse than the service on the snowy day. Also, never pre-pay for gas, if you are only going to use a quarter of a tank. We have to figure out this scheme and make it work for us in the future.
But it’s ok. We set off on 90 through the Ted Williams tunnel off to sometimes Wystah, for our 1130 appointment. We thought we’d have time after the appointment to grab lunch, so we muscled through.
With only one wrong turn we made it by 1120. And then waited. Those of you who were following on Twitter saw my pictures… it really is a lovely waiting room. So we waited a while for our doc and nurse to get there, and I perused the magazine selection. I want to point out here that ALS patients
are people too- the top magazine was the 2018 Motorcycle issue. This goes to show that even if we can’t control our own arms and neck, we want to go fast!!
This visit is really about the Doc having me sign updated consent forms for change in time frame (they needed to add more time to allow patients to actually QUALIFY for the trial. This seems to me a poorly written trial!) Then, asking questions on the ALS Functional Rating Scale (ALSFRS). This scale is really just – “Can you walk with or without assistance? Are you excessively drooling at night or during the day? Can you cut your food? Can you chew and swallow? Any shortness of breath?” On a scale of 1-5, 5 being the worst case. I THINK that I have to get worse on this scale from where I started to qualify – it’s not written but I think that’s the criteria. Again, whoever wrote this study, I think that its great but do I really have to get WORSE than I already am to qualify???? Oh, and they took my pulse, blood pressure, and temperature. That’s ALL they did. (Thanks FDA).
45 minutes later, it’s 1245 and we get to leave. By the time we got on the road it was 1300. Mel still hasn’t eaten anything. I’m running on my bagel at 6. Now, if you know me, I’m a hobbit. I need food!! So at this point we are hangry and stressed and I have the disadvantage that I can’t eat quickly, so now we are panicking about getting to our flight in time because security checkpoint at Boston is worse than Reagan. Out is the sit-down lunch in Wastah, in is Macca’s fries and soda and the drive home. And general hangriness.
At this moment two things happened: first, we got turned around and I asked Mel to make a U-turn. Driving along, we were just about to turn into an empty parking lot when I noticed a sign… “Centerfolds”… and just underneath…. “Dancers wanted”. I laughed out loud, and luckily Mel thought I was laughing at her, so she didn’t turn in. We eventually got back on the right road and then the second thing happened. We saw a sign… “Our Lady of Lourdes” parish. Now, I firmly believe that the good God who made the world has agents throughout the world, angels and saints to guide us along to get to heaven. So when out of nowhere I see a sign about Mary or something that ties in with my life and God’s grace, I KNOW it’s a sign.
Never underestimate. NEVER.
We got to Boston no problems at all. No traffic. Not even a whimper. And we were even helped at the car return by a nice old man (Mel has a soft spot for nice old men). And we whizzed again through security because of the tSA thing. Except… I tell you, Boston needs more experienced TSA people. I’m wearing my foot brace outside my pant leg, so they can see it. I go through the metal detector, nothing beeps. Should be fine, right? Nope, the lady sees my brace and asks “is that ok?” and makes me wait for a supervisor. Who then doesn’t even look at my brace but does a drug swab on my phone!!!! (of course, the one Luke spilled egg yolk on…) I dunno, sometimes I feel like Mel, like I’m on a hidden camera all the time.
We get through and go to get food and again, something pops up. Wolfgang Puck’s
express… oo and an area for beer! They are the same thing? No? Huh? It’s disorganized and confusing. We order the food at the express and go to the bar where apparently they also serve food (you wouldn’t know it from the lack of signs). The bartender looks disapprovingly at our one beer order and asks us to sit at a table instead…. Boston was a lot nicer in the snow, to be honest. The buffalo wings were good but….
Ok, flight home was uneventful aside from a little lack of room. But instead, I want to point out that Melanie, two times, showed a simple act of kindness to a fellow passenger that melted my heart and reaffirmed what a special, wonderful lady she is and how blessed I am that she is in my life. I’m not gonna say what exactly it was but she’s an amazing lady.
This is where the last bit gets funny. We couldn’t find the car. We pre-paid for our full day, then walked levels 2-4 of the parking deck. Because we didn’t remember driving down after we went up…. we eventually got there after 20 minutes of searching. Then, we get up to the gate and it says we owe money, the guy at the cash counter isn’t being helpful, “push the button”, and apparently you only get 20 minutes to leave after pre-paying. Then they charge you for new time. Except… wait, we paid for 24 hours, we shouldn’t owe squat!!! So we go to the guy at the cash register who pushes his own button and tells us this…. and before Mel and I can explode, he realizes we paid for a whole day and lets us through. And home we went… again worried about the EZpass thing because it’s still confusing, and we were on 66 before 7pm.
And thats it! Thanks to Mom again for watching the kids, thanks to all who followed along on the twitter machine and made it possible. Thank you most especially to Melanie who is my steadfast companion, my chauffeur, my rock, and the most wonderful woman in the world. The next trip is in May, another short trip just like this one. (Thanks FDA.)
More to come this weekend!