Holding on

On January 18, 2018, I received a phone call from my daughter at 6:30 am.  NO ONE calls me at 6 am unless someone is dying, sadly I do mean this literally, so I REALLY dreaded answering the call.  At the same time, I NEEDED to answer so that I knew she was alive and the one making the phone call.  I answered the phone and heard the sniffles I expected to hear, followed by…..”MOM?”…..I whispered, “yes”…and then I held my breath.  ( silently thinking of everyone I knew and praying the call was not about them)

“Mom, Brandon called me and told me that Sarah was killed in a car accident last night”

“……………………………………………………………………………………………………………………………………………..”

I had no words.  Literally no words.  I couldn’t think, I couldn’t speak.  I felt like my insides were being ripped out of me.  and then came …………….

NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This last week has been absolute hell, praying that she didn’t suffer while imagining the worst, making phone calls, TRYING unsuccessfully to be consoling to those that are left behind.  I can’t fix this!  I can’t take away their pain or my own.  I would if I could!!!!! I would trade my life for hers in a second if I could.  LOGICALLY, I realize that I can not change what happened, but I do NOT do good with feeling powerless.

How do you comfort parents that will never see their baby girl again?

How do you tell her husband that he HAS to be strong because they have a two year old daughter?

So many unanswered questions…… 😦

So I have to focus on what I CAN DO….

I would like to TALK (write) about Sarah and who she was for a few moments, if you will let me.

Demographically :

Sarah just turned 27 last month.  She was newly married (3 years) to her best friend in the world, (though they had been together for 8, and knew each other from Grade School.) She has an absolutely beautiful 2 year old daughter and very supportive and loving parents.  She LOVED animals, and worked as a Veterinary Tech for the last several years.

On the inside:

She possessed one of the biggest hearts I have ever come to know.  ( You wouldn’t know it, if you didn’t look past her “angry resting bitch face” though).  At 5’1, she knew how to use it!  She was a mini superwoman, trying to save the world. (Humans and animals alike)

Below are some pictures with captions explaining some of the memories I will always cherish.

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Thank you for letting me share with you.  I know that I can’t bring her back, but sharing some memories, helps me “Keep her Alive”, and she will always be in my heart.

For those of you that have dealt with “the untimely death” of someone ( not that there ever is a “good time”), What helped you deal with your grief?  I have heard that talking helps, but I feel like Everything that comes out of my mouth is the wrong thing.

Sarah’s funeral is this Thursday.  Saying “I’m sorry” doesn’t begin to cover it.  Saying I have “no words”…..well I don’t…. How do you help her family begin to heal?

My “Dirty Little Secret”…..

I CAN’T KEEP MY COFFEE CUPS FROM LOOKING LIKE THIS EVERY WEEK!!!!

(So not what you were expecting though huh?) 😉

But while you are here, can you help?

I’m serious!!! The first step in getting help is ADMITTING you have a problem.

I have a major problem!!!!  Not only with dirty coffee cups, but with coffee in general, I am an addict.  But let’s start with the smaller of the problems….. my coffee cups.  This is disgusting!  The sad thing is, the cup just came out of the dishwasher.  (maybe I need a new dishwasher?!??!) That would incredibly suck because, just this morning…..

Another one bites the dustanother one bites the dust

This is my second coffee pot funeral this month!!!!

Each day, I rinse my coffee cup out with warm water, and load it into the dishwasher.  (On the average, the dishwasher is run every other day).  After a week or so though, my cups look like this.  I don’t understand how that’s even possible.

About one month ago, Einstein told me I was “doing it all wrong”, and to prove this, he filled all of our coffee cups up with hot water, and let them soak in the sink for a couple days (periodically refreshing the hot water).  YES I was mad that I couldn’t use the sink for 2 days, OCD remember? BUT, after spending over an hour scrubbing them out with vinegar, baking soda, AND a toothbrush the month before, I was more than willing to let him SHOW ME “what I was doing wrong”.  (I did take pictures of him doing it his way, and I do believe he used more elbow grease than he let on, but either way the cups came clean….. FOR A WEEK!!!!!!)

Fast Forward to THIS MORNING.  Not only could I not find a CLEAN cup, but another coffee maker bit the dust.  😦  I really wish someone delivered coffee in my neighborhood since I shouldn’t be allowed to drive, let alone SPEAK, until I have at LEAST a cup, but no such luck.   So now, here I sit with freshly scrubbed coffee cups, and no coffee maker.  cups are cleanI have ordered yet another new one from Amazon, though in reality I will run to Walmart and buy a ‘spare’ within the next hour. (Starbucks made a killing from me this morning)

But how do I keep my coffee cups from looking like that?!?!?!?  Any help, tips, etc would be most appreciated!!!!!!!  Ok tips like “stop drinking coffee” or “don’t make it so strong” will be considered offensive and I may have to kill you…only real help please.

coffee pic

 

 

 

Air Travel with MS- Use the tools available!!!

I wrote earlier this week about planning my trip to Boston in April.  I made a joke about riding a horse on the subway, because humor (at least the attempt to be humorous) is how I deal with Anxiety.

I spent a couple days smh thinking that spending 17 hours in a car almost sounded better than a 2 hour flight.  No I am not a masochist!  What I am is ‘experienced’.  It’s sad to say, but dealing with people at the airport can be just as mentally and physically draining as making a 17 hour drive.  Often times, people are pushy, judgmental, and downright rude, especially to individuals with “invisible illnesses”.

In the past, I have let other people’s opinions, push me to try to handle more than I could.  I have fallen numerous times at the airport because I insisted on trying to “do everything myself”.  The LAST time I tried to go without assistance, I ended up falling and breaking my arm.  (Go big or go home?)  For some reason, I insist on learning things the hard way :(.   I didn’t have a choice about using a wheelchair on the way home after that.

I have requested wheelchair assistance each and every time I have flown after that, but it still stresses me out so much.  I HATE the stares I get because “I don’t look sick”.  I hate that because I become so uncomfortable, I think I make my companions uncomfortable.  I want this time to be different!  While I can’t control other people’s ignorance, I am determined to control my reactions to their ignorance.  If at first you don’t succeed try, try again?

So….This morning I put pen to paper (so to speak) to try to lessen my anxiety.  Here is what I came up with.

Requesting wheelchair assistance when you “don’t look sick’?

A Series of Hurdles

HURDLE #1

LOCATING a Wheelchair. When pulling up to the curb….there are police everywhere, hurry hurry get out of your car…. um I can’t... past experience has taught me that it is better to plant my ass right where it is while someone brings me a wheelchair.  I have notified the airline ahead of time that I need wheelchair assistance., but to be honest, they are usually not prepared.  So I will sit and wait.  After waiting 5 or 10 minutes (which will feel like an hour) for a wheelchair to be located.  I will stand up, take two steps to the wheelchair and sit down.  My bags will be handed to me and I will be ready for  the next hurdle.

HURDLE # 2

Now the staring and judgement begin.  (if it didn’t already when I took two whole steps).  100’s of eyeballs will be on me.  She doesn’t look sick, why is she using a wheelchair?  She must just be lazy etc etc etc.  I can literally feel the eyeballs combing every inch of my body looking for some outward sign that I have a disability.  (after experiencing this so many times, is it any wonder I no longer possess even a shred of modesty?)

Hurdle #3

Getting in line to check in.  While I am going to do the online check in thing, and print our boarding passes before we leave for the airport, for one reason or another, I often end up having to go to customer service.  The biggest hurdle that this poses is additional time,  (gone are the days of arriving at the airport 20 minutes before your flight leaves) but OK,  ALLOW Extra time….CHECK!

Hurdle #4-

Now to navigate the airport.  I used to ask my friends, kids, etc to push the wheelchair through the airport because I felt selfish asking an employee for help when there might be someone that needed it more, But people do not pay attention to wheelchairs. So many are busy dealing with their own stresses, they do not realize that they are standing right in the middle of a walkway. (Someone tried to yell at my daughter once for running into her even though she was the one that walked right into me, and even dropped her water in my lap….yeah that didn’t go so well) So now I let the airline personnel do the “driving”.  I have learned that there are fewer confrontations and angry words this way.navigating the airport

As I began writing this today, I remembered reading a fellow “mser’s” blog about Traveling with MS as a companion, so I paused to look for it.  I’m glad I did, his words about trying to navigate an airport with balance issues summarized it better than I could.  In his blog he says,

 “You see, people inside an airport are clueless. They wander around, either looking at their phones, looking for their gates, looking for something to eat, somewhere to sit, or rushing through the crowd like a running back picking a hole to run through, and they are all oblivious to who or what is in front of them, in back of them, or around them. That is not a good feeling for someone with balance issues, so I simply steered to one side of the terminal and stopped or slowed down when someone threatened to invade my orbit, using my cane to secure my space if necessary. It felt like walking through a mine field.”

He is absolutely correct.  I DO NOT need that headache. Here is the link to the full blog post, if you would like to read the entire thing.  I recommend it! (hint hint)

Hurdle #5 Dealing with the Dreaded Airport Security- or TSA agents

To some, calling someone “a TSA agent” could be a worse insult than calling them an “Asshole”, maybe they are synonyms?  Even though I know these agents are there for our protection, most people see them as another hurdle.  For me though, even though very time consuming, this is the least stressful part of the whole airport experience.  The last time I  tried to go through security the “normal way”, they asked told me to STAND STILL in the full body scanner….lol me stand still?!?!?  Yeah right!!! I tried 3x and kept touching the inside of the machine (balance issues).

I did almost accomplish this ONE time, but still had to go through a pat down because they questioned the bag of pee strapped to my calf.  (More about that another time though)  So now I just request a pat down.  The fact that I have been “delivered in a wheelchair” saves time answering questions.

If you really think about it, the pat downs really aren’t so bad.  I assure you the agents that have to do them are way more uncomfortable than you will ever be and it is for your protection.  ( In today’s society with all of the lawsuits and people that are so easily offended, I would be terrified of losing my job every time I was forced to touch someone)

TSA notification cardI found this card this morning while checking out TSA’s website.  Maybe it’s helpful?  I might print it and take it with, but I assume it’s just as easy to request a pat down.  The site is interesting enough if you have time to check it out.

Okay pat down complete now to find the gate.  (I really should stop asking the agents for a kiss when they are done….I’m sure they have heard that joke one too many times)

Getting to the gate is relatively easy, if the agents are doing the driving.  Then its just a matter of waiting.  I anticipate a few more angry stares when I get out of the wheelchair and WALK to the bathroom.  (even more if I stand facing the toilet in a woman’s bathroom to  drain the catheter bag)  A few more when the airline “let’s” me board with woman and small children…… but really who’s problem is that?

^^^^ took me two days to write.  As I did, my anxiety about the upcoming trip “melted away”.  I typed, I cut, I typed again….etc etc.  I reread my own words numerous times.  The only question I have left, is “Why do I care so much, what other people think?”  I tell people all the time “you do you”.  Maybe it’s time I listened to my own advice?

Can you ride a horse on a subway?

Planning My Next Adventure

I am going to Boston for 4 days in April…..You call that an adventure?  YES I DO! But, The adventure I am speaking about now though is the PLANNING part.  I am excited, nervous, and to be honest, a little bit scared.  You see…. I know how to ride a horse, but not a subway, or even a bus for that matter….So there you have it….Country girl meets Big City?  Not that I have never been to a Big City, but it is something I try to avoid since being diagnosed with MS.  When I do go to Chicago now, it is only to see my “MS Specialist”, at the same place, taking the same route that I have taken numerous times a year for the last 7 years.  I drive my own car, and use the valet parking at the hospital (yah discount because I have a handicap placard? …. If you call $13.25 for an hour a discount….smh)  I have that routine down pat.  But a new city where I don’t know my way around?  The fact that I have continuously heard that Boston is the “Walking City” makes me a bit nervous.

Anyone up for a road trip?

On New Year’s Eve, Einstein and I had his best friend and his wife over to celebrate.  Us girls, were making small talk in the kitchen while the guys played “Kung Fu Jenga” in the Living Room.  “K” was telling me about a “you-tube” conference that her daughter wanted to go to in Boston during the month of April, but she was a bit nervous (also not liking big cities), and not knowing much about You-Tube.  I told her, I thought it sounded like fun!!!!  (I want to learn more about making videos for You-tube, I love meeting new people, and YAH ROAD TRIP!!!!)  She asked me if I wanted to go……. UM HELL YAH!!!!!!!!!!!

As the excitement built in the kitchen, the guys came in to see what we were making such a fuss about. We told them that we were planning a road trip to Boston. Before the night was over, it was decided that we would take my car, they would pay for gas and the hotel.  I just had to “get the girls there and back in one piece” .”D” (Einstein’s best friend even offered to throw in a lobster dinner)  DEAL!!!!!!

Let the adventure begin.

I spent the next week trying to plan the best route and times to travel.  If we drove 10 hours the first night, we could make it to Niagara Falls, New York, get a hotel, crash for the night, see the Falls in the morning, AND still make it to Boston Thursday evening in time to get rested for the big conference the next day.  We could do the conference on Friday, lobster dinner that evening, and head home on Saturday morning.  Easy peasy right?  HAHAHAHAHAHAHAHAHAHAHA  Who the hell was I kidding?

INTRODUCING LIFE WITH MS

Now the doubt, insecurity, and anxiety come in (another invisible symptom of MS). It’s NOT that I COULDN’T do it, it is more that I shouldn’t do it.  I fucking HATE MS!  If I spend that much time in a car, my body is going to be in SO much pain for at least a week afterwards. (How could I have forgotten this after last year’s 15 hour road trip to see my niece get married?!?!?)  I ended up in the hospital on steroids for a flare up, and another new symptom…Sciatica.

Traveling with Multiple Sclerosis

What if the car breaks down?  It’s not like I can WALK for help.  What if I fall?  Will my insurance cover me for an accident in Boston?  and so on and so on…

Ok pity party over. Ok Grace you’re scared so what? MAKE IT HAPPEN!!! Did I mention I am not Dead yet?  I also am NOT going to let MS make me feel like I am.  I may have to make some adjustments, but this is going to happen!!!

Back to the drawing board.  Yah determination!!!!  Just for the hell of it, I decided to see what it would cost to fly in comparison to driving.  After adjusting our dates and times a bit, I was able to find round-trip airfare for $136.00 a person.  NOT bad at all!  Obviously it isn’t first class, but sitting uncomfortably for a couple hours on a flight sure as hell beats 17 hours of it. First hurdle handled!

I have no clue how I am going to navigate my way around Boston without my car, but I’m up for it.   I still have a few months before we leave, so plenty of time to research and you guessed it…..BLOG about it….. Challenge Accepted!

If anyone has any tips or tricks, or must see things in Boston please let me know!!!

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

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)

light bulb over your head Duh, Florida!  Bones is from Florida!!!!!!!! tiki doll

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…..

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……

right way

wrong way

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 🙂 🙂 🙂