Let’s get moving…

July 13, 2018July 8, 2018 ~ msgracefulnot ~ 30 Comments

Thank God not the packing and unpacking kind! I mean the putting one foot in front of the other moving kind of moving.

So I bought a “generic” Fitbit. By generic I mean the $30.00 not name brand one from amazon. ( If interested….click the picture!!!) While the specs say that I can link it to my phone, check my heart rate, and sleeping patterns, the only thing I investigated about it, is how many steps I take in a given day.

I’ve heard people talk about making their goal 10,000 steps in a day, and wanted to see where I compared…..

NOT EVEN CLOSE!!!!!!!!!!!!!!!!!!!

On an average day, I took about 1500 steps. WTF?!? I am busy from the time I wake up til the time I “pass out” each night…. That couldn’t be accurate!!!!!

Well it turns out it is. I spend so much time driving, waiting at doctors, playing on the computer, fighting with insurance companies, reading, doing laundry whatever…that I really don’t move. SMH

Time to fix this shit! I made myself a challenge to get at least 3000 steps in a day and I have done it!!!!!!! Can I have a cookie now?.… No I’m actually serious…..Ok I’m not, but I AM feeling good! I am proud of myself. Not only for setting a goal and making it, but for facing a huge fear of mine by walking alone again.

I am not quite up to a mile at a time yet, but I have learned that if I can beat the heat (waking up at 5 am), I can come close. I have even started taking my dogs with me again… ONE AT A TIME, and holding the leash very loosely.

Walking by myself in a residential area is kind of boring,

and to be honest it is still kind of scary for me considering a crack like this can be a major road hazard. but it is still better than walking on a treadmill and every step I take hopefully keeps me out of a wheelchair that much longer.

Sometimes, I can con my neighbor into walking with me, but she works nights and doesn’t appreciate the early morning “Hey let’s go for a walk wake up calls”.

A bonus is that I don’t smoke when I walk, so if I can keep increasing my activity, maybe it will help with the quitting smoking goal too.

Stranger on the plane

June 9, 2018October 5, 2018 ~ msgracefulnot ~ 24 Comments

As I wrote yesterday or the day before (damn the last week is a blur), I was pretty paranoid about leaving vegas after what happened last time I said goodbye to a friend. All the bullshit I went through at the airport in Houston to get to vegas, had me dreading the trip even more. (another story for another time)

As I walked through the door of the airport, a sudden calm washed over me. Maybe it was the xanax kicking in, maybe it was that I was going to home to see girls, I honestly don’t know what it was. Maybe it was exhaustion? Either way I had not a care in the world. I didn’t take more than 10 steps into the door before I found a porter ready and waiting with a wheelchair for me. When I showed him the boarding pass on my phone I realized I was in seat 8F ( yah window seat….maybe I could sleep?).

I barely remember that pat down, even though the foley catheter (who’s name is boppy, for bag of pee) set off the metal wand, I really don’t remember much about it. We stopped for coffee and I was deposited at the gate.

I was the first to board the plane (after the pilot and flight attendants.) The agent that took me to the plane even stashed my bag overhead for me. I balled up my sweatshirt and laid my head on it closing my eyes to let the world drift away. I couldn’t have slept more than a few minutes, before being awaken by this sight.

Meet Timmy

Timmy is the service dog for my new friend Bob…… Bob has Retinitis Pigmentosa, and is going blind, or as doctors have told him, he should have been completely blind years ago. But I am getting ahead of myself, let me take a few steps back.

So I open my eyes, see this beautiful patient dog looking at me and let my eyes wonder up the harness to the man holding it. He asks, “Are you ok with dogs?”…. I kind of shook my head and muttered, “um yeah, but where is he going to sit?” thinking….Does he get a seat? are you putting a seat belt on him? is he going to sit on your lap? The stranger responded, “oh he’s just going to sit down under our legs” HUH? (remember I have a German shepherd, who always TRIES to lay under my legs)…. Again, Ok.

Sure enough, Timmy laid under the seat in front of the stranger and between his legs. As the other passengers finished boarding, the stranger allowed me to take several pictures, an introduce myself to Timmy. At one point he said, I have RP and this is my service dog. I actually knew what RP was…..well kind of, I knew how to say it, and that it meant he was going blind. I think I surprised the hell out of him that I had heard of his condition. You see, I follow and greatly admire the writer Susan Richardson, the author of Stories from the Edge of Blindness. Susan has also been diagnosed and living with RP for 16 years. If you don’t know Susan, please check out her blog, you won’t be sorry.

So back to the “stranger” on the plane, His name is Bob by the way, and by the end of the flight, he really was no stranger at all, but an incredible, smart, friendly guy. We talked for the full four hours of our flight ( although it really felt much shorter than that) We discussed politics. yes I said discussed. We disagreed about a few things, but I think we both LEARNED from each other.

When we were discussing how to find happiness while living with a health condition, he taught me a new term, “stamp collector” to describe a person that holds on to any and every misdeed that someone has done to them. We both agreed the secret to happiness is NOT collecting stamps, both literally and figuratively.

I could go on and on about the things we talked about, but I guess the whole point of this post, is that I am glad a “stranger” took a chance to open up about themselves and took the time to listen to another stranger’s stories and opinions.

I’m not a religious person by any means, but I do feel like I was “blessed” that day on my way home, and I am grateful for it. I am also very grateful to have met so many wonderful new friends here on the interwebz. Sincerely, I Thank you all from the bottom of my broken heart.

Soon, I’m going to have to tell you all about my Best Friend Gary, (the reason I went to Vegas), and about all the things he did to keep my mind occupied while I was there. I really am a lucky girl. For now though, I have the pleasure of Dutch’s company while Dan’s family finds a new home back in Illinois.

Is it a guy thing or a puppy thing that makes them take EVERY toy out of the bin?!?!? lol

Better late than never

May 4, 2018October 5, 2018 ~ msgracefulnot ~ 11 Comments

I’m sure by now most of you have seen, heard, or been nominated for the 3 day quote challenge. Way back on April 18, 2018, my dear friend Steve Markesich nominated, challenged, or otherwise taunted me to participate in this challenge. As with most things, I promised to get around to it as long as I could adjust the rules a bit.

The Rules as they have been explained:

1. Thank the person that nominated you.

2. Write one quote each day for three consecutive days (3 quotes total)

3. Explain why the quote is meaningful for you.

4. Nominate three bloggers each day to participate in the challenge

My translation of the rules:

1. Thank the person that nominated you.

Thank you Steve. BUT, not only for the nomination. Thank you for being a great sounding board, my being a friend, for being an inspiration to other “MSer’s”, and thank you for the cup of coffee you will be buying me for “participating” 😛

2. Write one quote a day for 3 consecutive days.

I can barely commit to taking a shower every day for 3 consecutive days in a row, so HAVING to write for 3 days in a row…not gonna happen. BUT, I will say that I really liked the quote you used and your explanation of why it’s meaningful to you.

You can either accept your new reality, confront it head on, and make the best of a bad situation. Or, you can curl into the fetal position, say whoa is me, lament about all the things that you’ve lost, become obsessed with the shitty hand you’ve been dealt, and wither away. In other words, you can get busy living or get busy dying.

I did watch the movie, and I really enjoyed it, so THANK YOU again for the recommendation.

3. I don’t know if it qualifies as a quote, more a clip from the movie, “The Green Mile”. “I’m tired Boss”. Why it’s meaningful to me is because I AM TIRED, as John Coffey says in the movie….

Mostly, I’m tired of people being ugly to each other. I’m tired of all the pain I feel and hear in the world every day. There’s too much of it. It’s like pieces of glass in my head, all the time… Can you understand?”

4. I’m not going to nominate 3 bloggers to participate in the challenge, instead I am going to challenge EVERYONE (well anyone who reads this)…. If you can’t be part of the solution, please don’t be part of the problem. For one day, if you don’t have anything nice to say, Don’t say anything. I am convinced, if everyone could do this for one day the world would not only be a better place, but it would also be a quiet one.

Boston Day Two…a day of hurdles

April 17, 2018April 16, 2018 ~ msgracefulnot ~ 17 Comments

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!!!!

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…..

After 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”.

This guy literally got the BOOT in boot camp

Gift Shop guy at the museum

fellow travelers from California

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

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

Since 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!!!!!

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.

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?

March 6, 2018 ~ msgracefulnot ~ 29 Comments

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.

Those 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.