So….. not what I was expecting…..

September 28, 2018October 4, 2018 ~ msgracefulnot ~ 18 Comments

A parade? For me? How Exciting!!!!

But not even a little bit true.

Let’s start at the beginning…..

😦 no the beginning would take to long

where to start? where to start?

Ah, just go with the flow…. let’s start with the picture I have posted. Apparently, it is homecoming weekend for our school district. I had no idea. As I watched the band, and trucks pulling floats assemble outside my house yesterday, my mind traveled to a different time. In some ways this makes me feel incredibly old, because I have been there and done that. I participated in Homecoming events, not only when I was in High School myself, but also as each of my daughter’s were. Wow that feels like I lifetime or two ago!

At the same time, I’m not done with Homecoming. In as short as 15 years or so, I will have Grandchildren that might be participating in Homecoming. I will be telling the story…..” when I was your age we had to walk 10 miles through the snow, Uphill to get to school…etc.” ( Ok that’s MY grandma’s story, but you get the point)

I wonder how different the world will be even in just the few years.

Yesterday, while sitting in the waiting room for my 3 week post op visit, (more about that soon) my mind started to drift to a post that I read earlier this week, by Bojana at Blogging with Bojana. In her post she talks about spending time with her young son at the playground. She writes…

Another good thing I’ve noticed spending plenty of time in the sandpit with toddles is the presence and acceptance of all the colors of the rainbow, that is an utter and complete absence of racism and xenophobia in their world. While there’s possessiveness and envy of another kid’s bigger and shinier toy, there’s no discrimination based on ethnicity, nationality, religion, appearance or disability. The society has yet to teach them hatred and prejudice, giving rise to inequality and aggression.

As I thought more about her post, which you can read in its entirety here. I thought that I had the condition for the beginnings of Utopia right in front of me. I may be misusing the word, but here is the definition I am trying to describe…

u·to·pi·a

yo͞oˈtōpēə/

noun

noun: Utopia; plural noun: Utopias; noun: utopia; plural noun: utopias

an imagined place or state of things in which everything is perfect. The word was first used in the book Utopia (1516) by Sir Thomas More.

Even though we are all sitting in a Doctor’s office, and there is still pain and suffering, as individuals, no one was adding to someone else’s discomfort. Young, old, black, white, blonde, brunette, bald, overweight, underweight….we were all there coexisting. Peacefully.

That is the kind of world I hope to see my grandchildren raised in.

In the beginning of the post, I said I didn’t know where to start, so I just started typing/rambling. I actually intended to tell you about my post op visit, but as I “reviewed” yesterdays events in my mind, my foot became very insignificant. I am not going to say anymore about Homecoming, memories, hope for the future etc or even my foot notes….. I made a funny ( at least in this post)

Instead I want to ask you for your feedback. Don’t you think the world would be a better place if instead of drawing lines that separate us from one another, we focused more on the common goal of helping everyone “make it”?

A very LONG walk

July 9, 2018October 5, 2018 ~ msgracefulnot ~ 27 Comments

I don’t know if I have ever talked about it before, but I used to be STUCK in a wheelchair. It was 2009, before I started Tysabri Infusions. I won’t give all the credit the that I am again walking to Tysabri, but it has been very effective at slowing down the frequency of my MS flares and relapses. There was also a stay in a rehab facility and a solid year of physical therapy 3 x a week once I was discharged. I have also been on Ampyra for, hmm I don’t know how many years as well. (If you have never heard of it, Ampyra is known as the “walking drug” for MS.)

A few years ago, I had worked up to being able to walk for a full mile at a time without having to stop or take a break. That’s NOT to say I wasn’t ‘down’ for the rest of the day, or that there were not a few falls ( and bone breaks ) involved, but I went from wheelchair to walking, and I was so proud of myself!!!! I had even begun taking my dogs for my morning walk, until that ONE DAY!

When I woke up that morning, I didn’t really feel like walking, but if therapy taught me anything it was IF YOU DON’T USE IT, you LOSE it. So I dragged my ass out of bed, brushed my teeth, coffeed, leashed the dogs, and headed out the door.

When my dogs went through obedience and therapy dog training, they were each ‘assigned’ different sides, D. O. G walks on the left, and SNUFF walks on the Right. (in the picture they are reversed) I wrapped each of their leashes around my hands tightly, and would soon find out that I had made a HORRIFIC mistake in doing so.

Both dogs could sense that I wasn’t feeling well and weren’t behaving as well as they normally did. (They were competing for my attention and walking under my feet.) I was very grateful to be rounding the last corner of the block (I was less than 200 feet from my front door)

The “Scene of the Crime”

This building was a barber shop, and the barber had come out to empty his trash. When he saw me he waved and called “hello” as he did 100 times before. For some reason, both dogs pulled in different directions and down I went…… literally something like this….

I landed directly on my chin and was pulled/dragged toward the un-offending man while he ran back in the store. (In his defense, he did TRY to come back out to help me up, but the dog’s seemed to have lost their minds when I fell and would not let him anywhere near me)

Somehow I got the dog’s under control and was finally able to stand up and limp home. I made it in my front door, called out to thing 2 and immediately collapsed again.

(to be continued)

I don’t think I made it clear when I posted this, this was a couple years ago. Sorry if I mislead anyone

Teaching my phone to swear

July 7, 2018October 5, 2018 ~ msgracefulnot ~ 25 Comments

Those of you that have ever talked to me on the phone, in person, gotten a text message from me etc, know that I have a “potty mouth”.. Not only do I frequently talk about “potty” and my bag of pee, but I just can’t seem to utter more than a few sentences without a cuss word or two popping out. Popping, not pooping, although I do talk about pooping or not being able to alot also.

Last month, or the month before, I had to do a warranty trade on my smartphone, which in my opinion is Not very smart, although some would claim operator error. 😦

I have always struggled with the talk and type technology, because I speak quickly and do not enunciate. This was proven when I asked my kids to “fix the damn phone” and they politely explained that I don’t enunciate when I speak. To prove them wrong, I turned on the talk and type and said “ENUNCIATE”, the phone responded by typing E9C8!

SMDH AGAIN!

So now I have this ‘New’ smartphone AND I am cutting down on the number of cigarettes I smoke each day, in effort to quit on August 15, 2018, so needless to say I have been swearing a bit more lately.

After talking out a message that contained some “cuss words”, I forgot to turn off the talk and type feature on my phone before I said,

“It’s not duck, the word is fuck. I really don’t understand your objection to ass, and on that note what the hell is wrong with shit or even hell? It’s not like I used all the words in one sentence”

My phone typed….

” It’s not duck, the word is duck. I really don’t understand your objection to ASK, and on that note what the he’ll is wrong with fit or even ****?

Immediately after reading that I said, “Bastard”, which for the record translated into “Last Turd”.

So I have decided to teach my phone to swear. I have been correcting THEN saving each of the words that it misspells or ***** out. So far I have added

piece of shit

fuck

shit

damn

hell

I cant say the C word, but it would probably come out as CANT anyway.

This morning I said, “I am coffeeing” which I know is technically not a word (its a way of life). The phone typed doddering…which I left because I probably was.

Can you think of anything that I am missing? When the day comes that I am finally ready to tell that ONE person that got on my last nerve off, I want to be prepared.

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.

We must have a bad connection

March 4, 2018March 3, 2018 ~ msgracefulnot ~ 17 Comments

It’s so easy to tell people “don’t over do it”, “take it easy”, “slow down”, or “don’t worry”. I know it’s easy to say, because I tell people those things all the time too.

My brain tells my mouth to say it, and words come out. For some reason though, my ears do not pass the message on to my brain. (or something like that) Something is definitely NOT working, the dots are not connecting….. smh

“Don’t over do it”, translates to

your pain is manageable today, you better get that done while you can
you don’t know WHEN you are going to feel this way again, so do it NOW!!!
fucking MS smh
but you are SO close to being finished, just do one more?!?!?

“Take it Easy” translates to

It’s ONLY laundry, how hard could this be?
I will only make ONE phone call (never mind that you are going to spend an hour on the phone waiting for a live person)
or getting “pissed off” because NOTHING FEELS easy….grrrr

“Slow Down”, starts the process of

but there is so much to do
never enough time
but RIGHT NOW I feel OK

PART of it is MS, part of it is my personality. I HAVE to make the MOST of each day! I HAVE to feel like I am contributing SOMETHING to the world, instead of being a burden! Some days though, I’m just bored or “stuck in a rut” I feel that pushing myself and pushing my limits will make me FEEL more alive.

I take the GPS estimated time of arrival as a time trial challenge.

So for those of you that also struggle with this “disconnect”, how do you manage this? How do you “slow down” and not overdo it? How do you try to “save” your energy for later?

I have heard (and said) that I should Prioritize and focus on One thing at a time. Ok, here goes, my main goal is to be able to Walk down the aisle at my daughter’s wedding next weekend. My eye is on the prize so to speak. I have set up my week with one thing each day and tried to space the “working days” in between the “recovery days”.

Monday

I have my Tysabri infusion at 9 am. Because I know that I will be “wiped out” for the rest of the day, my mom is coming out to drive me and take me home afterwards. That’s it! That’s my whole day.

Tuesday

I am installing 5 electrical outlets in my house. Since most of my furniture is just kind of piled in the center of the rooms, now is the time to do it. While I have pulled wires, and connected outlets for years, I do still need help. My dad is available to help me before his surgery, which has been rescheduled for March 20th, so now is the time. Unfortunately, this will involve some more climbing in my attic. Definitely a Working day.

Wednesday

I am getting my nails done for my daughter’s wedding. I haven’t done this in years, but if memory serves we correctly, it is a somewhat “lengthy process”, meaning forced RELAXATION time. If I am able to “lose the boot” as planned, maybe even a pedicure?

Thursday

One Doctor’s appointment with my chiropractor to try to adjust any “damage” I might have caused my body over the week. I have to pack for the out of town trip and that’s it.

Friday

Out of town for the wedding!!!!!

So there it is. I have prioritized. I have planned minimally, allowing myself several rest breaks, and I have “my eye on the prize” Wish me luck?