Where in the hell have you been?

June 4, 2025 ~ msgracefulnot ~ 9 Comments

It feels like I have been to hell and back, AND I’ve got the scars to prove it. ( I could share a post about the scars alone, but let’s not do that now)

I still laugh when I tell someone that I started a blog about MS several years ago, yet I can’t remember one post I made about MS. ( Ok, I do remember advocating for Tysabri and bladder incontinence treatments, but not much else) If I remember correctly, 80% of what I what I wrote involved aging, empty nest syndrome, traveling, my kids, a bit about my grandkids, and let’s not forget Einstein and all that bullshit.

While I am no longer at my “rock bottom”, I also don’t want to rehash everything that has happened yet. Instead, let me highlight a few of the BIG changes that have been going on (in no particular order)

I QUIT SMOKING!!!! Yes the 2 pack a day chain smoker for over 30 years quit smoking. It’s been over a year.
I gained 20 lbs from quitting smoking
I had a male best friend and a female best friend die. How fucking dare they?!?!? Didn’t they know I needed them?!?!?!?
Maybe 10 more lbs gained from that.
I had bladder cancer. I had surgery, I had BCG (chemo), was declared cancer free, only to have it come back. REPEAT (I had surgery, I had BCG treatments, and was told, “I don’t see any cancer, but we are going to repeat 1/2 a treatment of BCG for 3 weeks and then repeat a cystoscopy in August.) If they find cancer in August, I will lose my bladder ….. literally. 😦
Not only did I have to stop Tysabri, I also had to stop all MS medications. HUGE increase in disability!
I have at least 3 more surgeries this year….. blah blah blah

Can I just say, It’s been rough?

I can’t believe I didn’t mention. I FINALLY LEFT EINSTEIN. Left like moved out, no contact, ( other that minimum kid and dog stuff) Not sure which is the bigger accomplishment, quitting smoking or quitting him, but either way, YAY!!!

I also traveled to Seattle, and not only met, but also stayed with a blogger, author, and overall Rockstar that I have admired for several years. I WILL write more about that more in the future……

On that note, I am going to stop typing.

for now

Damn Girl! Where’s your bottom?

November 22, 2022 ~ msgracefulnot ~ 7 Comments

That might just be the title for my new book! KIDDING!!!! Like I need another project in my life…smh

“Where’s your bottom?”, is however what a respected ‘friend’ said to me after I reached out to her last week. I was speechless. Not because I was offended, I don’t think, but I honestly started questioning myself. Have I hit rock bottom? What exactly is rock bottom? Is it a level you set for yourself? Does society dictate what rock bottom is?

I should probably go back and elaborate or provide more context about the original conversation. This person I reached out to is someone whose strength I admire, who’s stubbornness rivals my own, someone who has MS and is also a blogger. I reached out to her, because over the past year, I have seen bits and pieces of her life here and there on Facebook and she seemed to be doing really well, while I on the other hand…. HAVE NOT….

I have been struggling a lot. Treading water maybe? Maybe I was looking for a magic pill? I’m not sure. What I do know is that whatever the hell I have been doing has not been working. I have been sleeping 10-12 hours a day, waking up tired and wanting to go back to sleep. Once I have dragged my ass out of bed, I went through the motions of adulting, and parenting my parents, then I watched the clock waiting for it to signal that it was time to get away from it all again. In between waking and the relief of bedtime, I was just kind of “going through the motions”. I hated the sound of my phone ringing or texting…who the hell is that and what do they want from me?!?!? Not to mention the 20-40 spam likely calls that I get a day. So I was there, but not there.

I needed something to be happy about, even if it was just being happy that someone else is happy. I NEEDED to hear something positive. (I have been surrounded by toxic people and so much negativity lately that it almost killed me) So I reached out.

I loved hearing the happiness in her voice and the excitement as she told me some stories. I did need that, but then the topic shifted to me. She told me that she had seen some of what I have been going through the last year on Facebook, and thought, “Damn girl, where’s your bottom”? And I have been thinking about that phrase ever since.

Where’s your bottom?

I don’t know. I really don’t. Honestly, I don’t want to know.

There is no prize for how much shit can one person go through, although it does seem like it’s a contest I have been having with the world lately. Do you win, if you can fight another day?

The thing is, whether I have reached my bottom or not, I do know that I don’t like where I am. I guess the real question is, “What am I gonna do about it?”

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.

My One thing box…. so DOING IT WRONG…..

January 13, 2018February 9, 2018 ~ msgracefulnot ~ 15 Comments

A few months ago, the LAST time I almost had a “mini mental breakdown” from trying to be superwoman ( GRACE, the damn costume does NOT fit) a really great friend of mine said, “Damn it Grace, will you just slow down?!?!? Focus on ONE THING, just one thing at a time!!!” “Yeah, yeah” I replied. ” I got it. (as I added 20 more things to my to do list)

We finished our conversation and she said, “I’ve got it! I am making something for you.” Ok? I didn’t really think much more about it…..

A month later, a box arrived from Florida, ( I live in Illinois)…..hmmmm Not medical supplies, (they come from Texas)…. Not my prescriptions…(THOSE came LAST week) too big of a box to be more bills ( besides that, medical collectors like to use big flashy envelopes so that all your neighbors know you are a slacker)

Duh, Florida! Bones is from Florida!!!!!!!!

She said she was sending you something…..

My mind went back to what I THOUGHT was our last conversation in which we had talked about going thrift shop shopping for an ugly “tiki like” statue.

The side story behind the “Tiki statue”.

Although I have “known” Bones for almost 3 years, we have only ever “hung out” (in person) two times. I live in Illinois, she lives in Florida. We “met” playing an online game on facebook, and it was over a year of talking on the phone, skype etc before we actually met in person. She was supposed to come stay with me for a week in Sept. of last year, even had purchased her airline ticket, but Hurricane Maria hit the day she was supposed to fly out. 😦 So the trip was cancelled.

We tried to find time in our schedules to pick another day, but with the holidays coming and my daughter’s upcoming wedding, we decided to wait and try again next year. To hold ourselves “accountable” we agreed to purchase the ugliest statue that we could find to be left at the other ones house. The only way you could get rid of the statue was to “deliver” it in person to the other one.

So back to the package…..

Why was she sending me the Tiki package? That wasn’t our plan. We were going to pick one out together….. 😦 and it was supposed to be HAND delivered or retrieved…. Hmmmm well I’m just not gonna open it! 😛

The box sat by the door for 2 hours before Einstein pestered me enough to open it.

I’m glad I was sitting on the floor when I did. Fucking tears came out of no where. When I opened the box this is what I saw…..

ONE THING

She had HAND MADE me my very own “One Thing” box to remind me to….. SLOW THE HELL DOWN!!!

Who knew that this woman that lives more than 1000 miles away from me, that I met playing an online game, would become one of the best friends anyone could ask for?!?!?

The box is not only a box to collect my to do lists. Bones did research on why I use the ORANGE ROSE as my blog picture. (Orange is the color for MS awareness and I printed the rose on our 3d printer, when I was feeling especially blah one day to remind myself that there is still beauty in the world) I know….. cheesy, but it works for me. She found images of butterflies, which I didn’t know also represent MS awareness.

Inside of the box she taped the picture of me skydiving that I had posted on my newly created blog’s welcome page. She included cut out One Thing “tags” with a letter explaining that how I was supposed to use this box. She said, ” This is for your LONG list of To-do’s, but…. BUT you can ONLY place ONE task on each piece of paper.” Of course there were more “rules”, but you get the gist?

Well I’m still doing it wrong……

I THOUGHT I was doing it right, but I was writing tags like the ones on the left, when I probably should have done more like the ones on the right.

Just because the words fit in the box, does not mean they will fit into a day!!!!…smh

Plan BOSTON?!?!? Seriously what the hell was I thinking?!?!? Yep I’m gonna plan a trip with 3 other people all by myself in one day! Doh! I tried, I reached out to everyone to confirm airline selections before booking. I couldn’t reach anyone, but outgoing messages were sent. So let’s start with cleaning the house. I probably should have chosen to vacuum OR dust OR laundry instead of tackling all of the rooms and all of the chores at once....but but…the tag said ONE thing…. and I only wrote ONE THING!!! CLEAN THE HOUSE!!!!!

I did manage to make a lot of progress on the lists on the left, but didn’t actually finish anything except for cleaning the house. ALL OF THE LAUNDRY washed, dried, folded AND put away!!!! All the dishes, vacuuming, dusting, and I even washed the floors and cleaned the bathrooms. As I laid down, (passed out) on the couch, utterly exhausted, I looked at the vacuum cleaner that I had neglected to empty or put away, and started the next day’s list….

The next day…..

I laid on the couch all damn day and most of the next….I was in so much pain.

WHEN will I learn?!?!?!?

I really don’t understand why I push myself so hard. smh I’m sure it has something to do with no longer being able to work outside my house, and self worth and all that, but I KNOW I will PAY for it later, yet I keep doing it.

Definition of Insanity: doing the same thing over and over again and expecting different results.
Read more at: https://www.brainyquote.com/quotes/unknown_133991

Thank you all for listening to me ramble! (WordPress is cheaper than a shrink)

Anyone have any ideas why I’m always in such a hurry to get EVERYTHING done?

Bones? Have I told you lately that I love you?!?!? ( get that song stuck in your head)

I never dreamed that this blogging adventure would lead me to so many supportive people and new friends. 🙂 I’ve had the time of my life 🙂 🙂 🙂

One Breath at a time

December 11, 2017December 11, 2017 ~ msgracefulnot ~ 17 Comments

A couple hours ago, a familiar name popped up on my cell phone. I debated about answering the phone because I had so many things I needed to do, and I knew I would get lost in conversation and end up not finishing what I was working on. Oh what the hell, I would just pick up real quick and tell him that we had to catch up later because I was busy.

I answered the phone expecting my friend to say “Hello Doll”, (which is what he usually says to me in his super sexy southern drawl.) but instead I heard a sniffle, a cough, and a sharp intake of breath. I questioned, “Ghost? (his nickname) Ghost are you ok? What’s going on?” Another sniffle, followed by, “No maam, this is his son, Levy.”…. OH FUCK! My mind thought NO! NO! NO! NO!! That’s about all I remember exactly. Levy was calling to tell me that his daddy had a stroke a week ago.

It’s amazing that when you get news like that literally hundreds of thoughts, questions, memories hit you at once. I had images of the first time we had met face to face running through my head. (We met through an online game that we had played together for 4 years hence the nickname Ghost. Mine was Milano, but my friend’s called me “Millie”.) I remembered the first time I heard his voice in real life, the hours of game play which turned into an incredible friendship, and so on and so on.

Then there was a voice through the fog…. “Milano, Millie, Maam…are you still there?”

“Oh shit, um yes yes I’m still here.”

More sniffles followed by, “Okay, maam, my daddy wanted me to let you know that he had a stroke a week ago, but he is doing ok, well he will be ok, I mean he is alive”…….

………………………………………………………………………………………………………………………………………………

Levy went on to try to explain that Ghost couldn’t talk… no not that he couldn’t talk, but that he couldn’t find the right words, or they just wouldn’t come out right. The poor kid was having trouble explaining what was happening because he didn’t understand what was happening himself. Hell I didn’t understand what was happening. I could hear Ghost in the background trying to say my name. Trying to help Levy explain, but he was getting angry that Millie kept coming out Molly, and he couldn’t make a sentence.

Somehow I was on the phone with Ghost, well kind of he was trying to talk, I was trying to understand, but then there were tears, so many tears…and they wouldn’t stop. I tried to tell Ghost that I was here for him. I would make the drive to Florida if his family needed me to. I told him I loved him and and and…. Then I was on the phone with his son again. I tried to tell him the same things I told Ghost. If they needed help, I could and would be there. There were just so many tears. In hindsight, poor kid probably thought “Oh no, I can’t handle you too”.

When I hung up the phone, I tried to make the calls to our other mutual friends letting them know why they hadn’t heard from Ghost, and to let them know he would be okay. The problem is, I didn’t know, …….I don’t know that he will be ok and again so many tears.

When I reached the “Elder” of our little group, he tried to put me at ease by explaining that this was common when someone had a stroke. It didn’t mean that he would permanently suffer, he reminded me that Ghost “IS A STUBBORN OLD COOT”….although he is only 55, he is pretty damn stubborn. I listened and cried for the next hour.

I am absolutely exhausted emotionally and physically. I am not going to jump in my car and make the 15 hour drive to Florida… yet. I am not going to drink the whole case of beer sitting in my refrigerator. (although I had envisioned doing just that) I am going to stop beating myself up that I didn’t call him last week when I saw the rocks that made me think of him. I decided instead to come here, and to write this.

We have all heard the sayings or cliches that you should always tell the people you care about that you care about them. You never know if there will be a tomorrow to tell someone. Slow down and enjoy life etc etc etc. Instead of just telling you those things, I am trying to tell you WHY I am telling you those things. Please take a minute and give your parents a call, give your kids an extra hug? Don’t be in such a hurry, and take today ONE BREATH AT A TIME.

The story with the Rocks is that over the years I have collected numerous things from people that have “touched me” or left a big impression. I’m not materialistic, it’s more something to hold onto when you are missing them, or a reminder that they are there. When I was at Ghost’s house, I asked if I could take these rocks from his patio that he designed. They were extras, but they reminded me of his characteristics….strong, hardworking creative etc. They are sitting on my deck as I haven’t figure out if I should add them to my rock garden, or my china cabinet with other things I have collected. I saw them last week and thought I should send him a picture to let him know I still had those silly rocks….but I got too busy. 😦