Boston Day Two…a day of hurdles

I probably don’t need to say that I CRASHED HARD our first night in Boston… YAH adventure? …  Getting moving in the morning was a bit of a challenge….. BUT we had reservations for A whale watch cruise and had to be there at 9:30 am to check in..so time to suck it up.

First hurdle

What the fuck is this?  Ok ok I KNOW that it is a Keurig.  I HAVE heard of them, but since I drink Coffee by the VAT (the way it was intended), I have no idea how to use one…

It’s gotta be basic right?

OK I put in a CUP of water, put the little itty bitty k cup thingy in, closed the lid, turned on the power and hit BREW…… NOTHING

OH COME ON!!!!!

I turned the machine off,  reopened the lid….  (Coffee and water were in the right spots.)  and turned it back on….while the little blue light kept flashing at me, it was still NOT  making coffee!!!!!  WTF?!?!?!  So I hit the switch next to the outlet…(since I didn’t have any coffee in my body, it didn’t register that it wouldn’t have any lights on it if that was the problem)  The switch was  for the garbage disposal….smh…. Come on, I JUST WANT SOME COFFEE!!!!!  I made enough noise cussing etc that my traveling companion surfaced and figured it out before I threw it out the door….

Next Hurdle

Coffee cup in hand, I opened the door to go outside and smoke a cigarette….and instantly FROZE.  (not the anxiety kind), literally FROZE…HOLY shit, I THOUGHT I was in Boston, NOT Antarctica!!!  Bitter cold and THE WIND!!!!  SCREW THIS….smh..

I went inside and took a nice hot shower.

After my brain thawed and I realized I was OUT of coffee, my determination surfaced.  I had not come to Boston to “hide out” inside.  I put on two pairs of leggings under my jeans, a tshirt, two sweatshirts, and my leather bomber, and ventured out to start my day.

One thing I can say about Boston, is that it has no shortage of Dunkin Donuts (literally one on almost every block), and Dunkin Donuts has COFFEE!!!!

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We made it to Dunkin Donuts, and found our way to the docks just in time for them to tell us that the Whale Watch Cruise had been cancelled because high winds and freezing temperatures made it unsafe to be out on the water.

ARGH!!!!!!

To be honest, I really didn’t want to be out in this weather anyway, but, but but……. MORE COFFEE….

 

I don’t know if coffee makes me smarter, or if it just helps me do stupid things quicker, but it definitely motivates my brain…..

whale watch guyAfter talking with Kevin from the whale watch cruises, we developed a new plan.

The 24 hour Charlie Card we purchased the day before was also valid on the Ferry, and we could use that to go to the Charleston Naval yard and see the U.S.S. Constitution and it’s museum… (YAH INSIDE STUFF)….When we were finished with that we were going to turn our planned Lobster Dinner into a Lobster Lunch and go on the Hop On and Off Trolley that was included with the Boston Go Card we purchased.

I know that I talk ALOT, to EVERYONE, but I didn’t realize just how many people I meet on a daily basis until my companions started taking pictures of me and my “new friends”.

While on the U.S.S. Constitution and at the museum…

constitution

We made sure to explore everything that we could “hands on”

and while I was able to get into and out of the hammock “ALL BY MYSELF” with no injuries…. I apparently do not mast well…..

Thankfully the floor was “padded”, because I did try the whole 3 strikes and your out thing, and they all ended with me on my ass.  (But the picture makes it look SO EASY)

Did I mention it was really really fricking cold?!?!?  oh and windy…..

Next stop…. LOBSTER…..

We took the ferry back to Long Wharf and enjoyed the following:  (caution lots of food pictures to follow)

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While we were eating, my niece (who had gone to college in Boston) texted me that her flight from Atlanta to Boston had landed safely, she was grabbing coffee’s for us, and would meet us by the trolley.

Although, I would recommend taking a trolley ride on your first day in Boston to get the “lay of the land”, I am glad we waited til our second day. I was cold, exhausted, and completely stuffed.  Sitting down was about all I could do.    If you stay on the Trolley from beginning to end, it takes about an hour and points out several historical landmarks, but you can also jump off at any of the stops and reboard just as easily.

BIGGEST HURDLE YET… Uneven surfaces

When you can’t feel your feet ( a normal ms symptom for me) uneven surfaces always create a challenge, but when you lose all muscle control in your leg (thankfully NOT a normal symptom for me) uneven surfaces and curbs like these look like 2 foot tall barriers.

After the trolley ride, we decided (more like my body decided) that we NEEDED to be done for the night.  It’s times like these that I really really FUCKING HATE having MS!!  I literally could NOT move my right leg when I attempted to get off the trolley.  It was like a 200 lb bag of sand.  Forget balance.  I would have been in deep shit, without help.  My companions, each gave me an arm and it took almost an hour to walk the 1/2 mile back to our apartment.

First order of business

20180405_210948Since she knows my struggles with technology, more specifically the UBER app on my phone, my niece handed me a beer, and took over the “troubleshooting”.  When she handed the phone back to me,  Uber was gone and LYFT was installed.

“The drivers are nicer, and it’s cheaper too”, she said.

As long as I didn’t have to go anywhere else for the night, I didn’t care.

Thank you kiddo for being my “Saving Grace”!!!!!

We spent the rest of the night catching up, and talking about our plans for the next couple of days.  (The best part was yet to come)  The next day I would be meeting some fellow bloggers…. IN REAL LIFE!!!!!

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Before going to bed for the night, I went out to my “cigarette corner” for one last smoke….and met this cute little guy…and his owner too.  One cigarette turned into, well lets just say a few more…and a couple more beers.20180405_235620

I have to share this picture because his story amazed me.  Cody is a 31 year old Russian translator in the peace core.  When I asked him why he decided on the Peace Corps., he said, “Because I wanted to help!”  We talked about backwards medical practices, debated about universal healthcare, and talked about the downfall of humanity in general.

While navigating Boston wasn’t easy for me, it was a beautiful city, and I met many fascinating people.

I went to sleep that night knowing that “Superman” would come “save me” in the morning.  I will write about that soon…. I Promise!

 

 

 

 

 

How did I get here?

I woke up this morning feeling,  I would like to call it “recharged”, but it is better than that, and I really can’t find a word to “define” it.  Liberated? Free? Optimistic?….I guess the definition doesn’t really matter, but the feeling is INCREDIBLE.

Today, I was “supposed” to run electricity with my dad, but the weather changed our plans.  As I reached for my “to do list” to fill up my day, a thought hit me.  I really LIKE this feeling.  Instead of rushing to fill the “free time” with some other task, I decided to do nothing, just for a minute…. Did I mention I like this feeling??!?!?  I still don’t have a word for it, but I really like it.

codependentyThose damn feelings of CO-Dependency kept trying to creep in.  Someone, somewhere must need something.  I am positive that I am forgetting something for the wedding, maybe I should start packing now, so I can recheck it 50x before we leave Friday morning?           STOP IT GRACE!!!

I looked at the calendar, everything is right on or ahead of schedule.  How the hell did that happen?  The last two? three? weeks are kind of a blur.

Okay so how did I get here?

I reread some of last weeks blog posts.  Oh yeah, I kind of remember doing that…. maybe?  I’ve been living on auto- pilot.  I have been “going through the motions” and not letting myself FEEL anything.

Yesterday, when I arrived at the hospital for my Tysabri infusion, the nurses kept asking me if I was ok.  “Are you sure, you’re ok?”  I replied, “Yes, I’m good, just overdue for this infusion and I’m really tired.”  and then they asked again…”Grace, are you going to be able to drive home after this?” I responded, “I’m not driving, I promise…my parents will be here in a little bit.”…. one more time….”Are you sure?”….. uh huh…..and I was out.

I woke up to my dad’s voice in the hallway calling out my name to see which room I was in.  The minute, I saw their faces, tears came pouring out of my eyes.  What the hell is this,  why was I crying?  It didn’t really matter, it’s not like I could stop the tears anyway.  So I just let them flow.

I don’t remember anything else from yesterday.  I know my parents brought me home.  I know I ate at some point etc etc.  and I slept.  I really slept.  I still don’t have the adjective to describe this feeling and I am going to let that be ok.

In the past two hours that I have been sitting here, drinking coffee and reflecting I have “learned” some thing about myself.

I can “handle” physical pain, but I do everything in my power to run from emotional pain, in fact,  I think I have done this my entire life.  I stay busy all the time.  I go out of my way to try to make people feel better all the time, because I can’t handle tears.  I can’t handle watching someone who is grieving suffer.  I literally would rather go to the dentist, get shot, jump off a cliff, you name it, than to FEEL emotional pain.

My first thought, was “that’s just pathetic”.  But then I asked myself, “Why?”.  Who says it’s pathetic?  Seriously, who’s voice is that judging and belittling me?  The voice was my own.  There is no one to blame.  It’s that VERY FRICKING LOUD “little voice”, in my own head trying to sabotage myself.  When I type it out in black and white, it looks just plain silly.

Ok, so I have some work to do on myself.  (But not today).  Today I am going to just be.  I am not “planning for tomorrow”, or “thinking about yesterday.”  Today, I am just going to be.

 

 

 

 

A Letter to My (pre-MS) self

letter

Dear Steve

MS will invade your world very soon. When it arrives it will be unexpected, shocking, and you won’t know what to do. Your inclination will be to ignore it. Don’t.

Your mind will swirl and you’ll become consumed with worry, so these words are intended to provide you comfort and advice. Whether you heed them or not is entirely up to you, but don’t say I didn’t warn you.

Your symptoms will be similar to those of the millions that suffer world-wide from this disease, but they won’t be identical because the way an individual experiences MS is as unique as their fingerprint. It’s different for everyone, so what works for someone else won’t necessarily work for you.

MS comes in different flavors. The most common is RRMS, or relapsing-remitting MS, which is the come and go kind. Those with RRMS experience symptoms, called flares, and these can raise hell with them in a variety of nasty ways over a short or extended time period, but they go away. This process repeats itself, but the frequency in which it does varies.

You will be lucky in one respect with your MS, but not here. Your MS will be the  primary-progressive kind (PPMS), which means it comes and stays, and gets gradually worse over time. Tough break pal. Your goal will be to limit the progression to a snail’s pace.

That’s all the detail I’m going to offer in terms of what you will have to deal with. No sense in causing information overload since you are still trying to grasp the reality of the situation. For now, I’ll keep it basic and offer you these suggestions that I hope you take to heart.

Learn as much as you can about the disease. Go on web sites and become your own expert and advocate. Beware of the message boards, however. It isn’t that they provide bad information, but those who post are generally going through a bad time and are looking for help. Happy stories are in the minority, so focusing on these boards can give you the impression that you’re royally fucked. That isn’t the case, so glean what you can from these platforms, but don’t let them be your bible.

Create a network of MS friends you can share information and commiserate with. You can try support groups in your area, but I think blogs are a better place to start. Not only are these a good place to get information from people who are offering to share their experiences in a less sensational and often humorous manner, but many of these authors are a hoot and more than willing to stay in touch. Who knows, maybe one day you’ll start one yourself.

Get a good neurologist, and don’t be surprised if you go through a few before you find one you trust, who is knowledgeable, who has an open mind, and is willing to work with you.  They must specialize in MS.

Don’t waste your time and money by travelling out of state to visit an institution that is re-known for MS research and treatment. You’re stubborn though, and are going to ignore this advice. So don’t be shocked when you are dumbfounded and pissed about what they tell you, and wonder how in the world they got their reputation.

Get used to needles because they will become part of your life. When you start self-injecting, it takes some getting used to. Please concentrate on what your doing, otherwise it will sting like a bastard and the resulting bruises will be impressive. And when you have your spinal tap, don’t let your neurologist talk you into having it done in his office. Have it done at the hospital. Trust me on this.

Self-injecting will be temporary, and you will graduate to an infusion center. Make sure you drink plenty of water in the days leading up to and the morning of the infusion. This keeps your veins plump and makes it easier for the nurses to hit one. Of course, you will learn the hard way and start following this recommendation religiously only after  it takes six attempts to get two needles in, and your arms look like raw hamburger.

Get used to drugs, and not necessarily the ones you did in college. Most MS therapy involves pharmacology. Your drugs of choice will be steroids and chemo, believe it or not. Get these infusions on a Friday because the chemo will knock you on your ass two days later (Sunday). Why use your PTO if you don’t have to?

Another area you won’t be lucky about is a rare and little known side effect from steroids: hiccups. They will occur the day after your infusion, come and go for the entire day, and be annoying as hell.  When you get the three-day course of treatment at home, they appear on day four and will last for three solid days. I shit you not. They will literally persist all day and night, and you will want to shoot yourself.

Apheresis: you will learn what this is when you go to the infusion center the first time and see other patients hooked up. It isn’t as bad as it looks and it will help you.

Get rest and watch your diet. Fatigue is a very common symptom so there is no need to make it worse. You will become less active over time, so watching what you eat is important because you don’t want to become a blimp. Oh, by the way. You are going to be ravenous the days you get infused with steroids.

Stay out of the heat. Increasing your internal body temperature raises hell with your symptoms, so avoid prolonged exposure to hot and humid conditions. And say goodbye to hot tubs and saunas. Yeah, I know, that really sucks. Deal with it!

Here is the one area where luck will be on your side. Pain is a very common MS symptom, and it can be excruciating at times. You, fortunately, will not have to deal with that, at least not for the first eleven years. If it finds you, you live in a state that has legalized marijuana for your condition, and it’s great for pain. I’m not sure if what they provide will give you a buzz though.

Don’t give into the disease, but don’t be stupid either. Exercise regularly and keep your core as strong as possible. Stay active, do as much as you can, whenever you can, but know your limits and don’t exceed them. The truth is you’ll be able to do mostly everything you can do now. The only difference is you will need to do it more slowly, more carefully, and in stages.

Don’t give up the intimacy in your life. You don’t have to.

half full

Most importantly, living with MS is all about attitude. If your glass is half-empty, you will focus on the negative, what the disease has taken from you, believe you have become a burden to everyone around you, and that your life sucks. This will become a self-fulfilling prophecy and cause your life to spiral into the toilet. Don’t go there.

If your glass is half-full, on the other hand, you will view this as a bump in the road and be fine. Granted, this is a huge bump, and there will be days where optimism is hard to find and you’ll want to scream, but ride that wave. If you do, you will learn to notice and appreciate many little things that you once took for granted, which is never a bad thing. You’re self esteem and sense of worth will also remain intact. Having a good attitude is vital, because MS is part of who you are now. It will not define you or rule your life unless you let it. And really, what choice do you have?

Remember, you are still the same guy you have always been, albeit with a big hitch in your giddy up. You’ll still have the same hopes, dreams and desires. You may have to amend them, but you don’t have to lose them.

Good luck.

Steve