Maybe I should start wearing pants?

It probably won’t happen, but MAYBE… I should?

As I was getting ready to leave for my doctors appointment last week, I slid a pair of sweats on, and both of my dogs went to the door looking at me expectantly….“Where we going mom??!?!”  Note I did say SWEATS,  as in sweat pants, NOT my shoes, or coat.  The simple act of putting on my pants told my dogs that  I was leaving the house?!?!?!?

dogs at the door

If you are a dog owner you have probably experienced this before when putting on your coat, or shoes, or whatever your “routine” is as you get ready to leave the house.  Admittedly though, I think for most people it is putting on your footwear.  This morning mine did it when they saw my pants in my hand??????

Ok time for a test.  The next day I put my tennis shoes on to walk on the treadmill, and received absolutely NO REACTION from the dogs.  Normally shoes would symbolize that you are getting ready to leave, but literally  NO RESPONSE!!!!!

a dogs life (probably because I wasn’t wearing pants)

Later that afternoon, I remembered that I needed to take the garbage cans to the curb.  I grabbed my sweats, and again BOTH DOGS ran to the front door…..smh  Seriously?!?!?  I literally laughed out loud. 

How do your dogs react when they think you are leaving the house?

MORE Tests….

Do they only do that when I put on sweat pants?  Would they react the same with Jeans or Leggings? Are they doing that because I chose to come out to the living room to put my pants on instead of my bedroom?

After a week of changing variables, I have concluded that when my dogs see me with pants on they think we are going somewhere.  ANY KIND OF PANTS!!! My “poor dogs”.

So now what? Stop taking them with me everywhere so they don’t think they get to leave the house when mom puts clothes on?  dog lifted into the carDo I have to start wearing pants all the time? Or do I just laugh it off and be happy that I am as important to them as they are to me?

The bond animals have with their humans is incredible.  I found another picture this morning of all 5 of my animals, (2 dogs and 3 cats) refusing to leave my bed after I had back surgery a few years ago.  Thing 2 literally had to drag them out of my room to feed them and take them outside to relieve themselves.

D.O.G. Waiting to be lifted into the car….not at all spoiledanimals after surgery (2)

I should probably mention at some point why I don’t wear pants.  Its simple really, I don’t like clothes, BUT ESPECIALLY pants.  The only reasons I wear clothing have to do with warmth and to portray some illusion of modesty.  (Ok I also don’t looking at my belly, which in my opinion makes me look several months pregnant)  Remember, no core muscles?!?  However, I am going to blame MS for this one.  While some areas of my body have lost “feeling”, ( like drop a 500 lb weight on my foot and I wouldn’t flinch), others have become SUPER OVER sensitive.  My left leg is an example of this.  When my pants move against my leg, it feels like bugs are crawling all over it…. EWWWW!  Very creepy!  Not to mention uncomfortable.

The second reason I blame MS, is bladder and bowel urgency.  I have rushed to the bathroom too many times to count and “not made it” just because of my inability to remove my bottoms quickly enough, so you see it’s easier to just not wear any, at least that’s what I will keep telling myself until the next embarrassing or “questionable” thing happens …. like my kids bringing friends home unannounced and yelling, “Mom?!?!?  ARE YOU WEARING CLOTHES?!?!?”…. smh.

I am sure my dogs will survive just as my kids did, but in the meantime I chuckle.  I hope you did too!

 

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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 🙂 🙂 🙂

Better than I was yesterday

I overthink!…. it’s true.  I OVERTHINK about EVERYTHING ALL the time!!!  So much so that I get lost in my brain playing devil’s advocate, trying to make sure I am seeing all sides of a situation.  I was in a funk this morning and couldn’t shake it,  I didn’t even have a known reason.  Then I turned on the camera, and started talking to myself.  I did a “brain dump”.

After making this video, before actually uploading it, I called a very wise, honest new friend of mine and asked him to help me “get out of my head”.  I felt like he listened to me ramble without judgment, and then I listened to him.  He gives good advice! Lots of advice, but good advice.  Thank you for that “Superman”!!!!

Anyway the moral of all of this, is that I want to be a better person.  I’m not saying that I am a bad person, but I want to be better than I was yesterday.  Sometimes I really hate that I overthink everything, but maybe its the overthinking that will get me there?

What started all of this…. I belong to many Facebook groups for people dealing with Chronic Illness, more specifically Multiple Sclerosis.  Yesterday in one of the groups someone posted a picture of a “nasty note” that was left on their car, saying something to the effect of “you don’t look sick, why are you taking a spot that someone who is sick needs?”  The note was much more harsh than that, but I think you get my point?  Anyway, the person posted the picture of the note saying, “because people suck”.  I assume she was hurt and just wanted to vent, and was looking for support.  Ok I get it…kind of….  What I don’t get though is why of the 409 emoji’s and comments that followed on the thread, I was one of the few that simply replied, “I am sorry that happened to you”.  People started sharing their own stories about how much people suck and the cocky comments they respond to people with like, “Well maybe I don’t look sick, but you don’t look stupid!”  (no offense, but after saying that and “showing your ass” to me, you kind of do)  Why does one wrong make a right?  Someone said or did something to hurt you and it’s automatically ok to hurt them back?!?!??!  I don’t get it.  Why not be better than them?  Why not be stronger than them?

What really set me off about the thread of comments, was one woman talking about how her 9 year old “told off” someone that confronted her when she was questioned for parking in the handicap spot.  Seriously?!~?~!?  Why didn’t she pull her child aside and say, “Some people just don’t get it”?  Why didn’t she take this as a learning opportunity for her child to NOT Be judgmental and filled with hate?  Why did no one in this thread, suggest that to her?  I chose not to comment on the thread further because I realize that I will not “fix” everyone.  Honestly, I don’t have the time or energy for that.  But I also know that I don’t want to feed into that either.

In the 20 years that I have lived with MS, and however many years I have used a handicap parking placard, I have been confronted numerous times both verbally and in writing that I don’t LOOK disabled. Shrug…. Ok?  Do you feel better after saying that to me?  I literally just shrug and walk away.  Sometimes I TRY to smile first, sometimes I don’t.  Again….SHRUG.  Occasionally, I will attempt to educate someone that not all disabilities are visible, but most of the time I smh and walk away.

People wonder why their is so much hate and anger in the world, yet they feed into it themselves.  I know that I will be confronted again, I can not control that, but I can control how I react to it. I CAN BE A BETTER ME!!!!

Here is another link to the video of my “brain dump” if you would care to watch.

Thank you again to “superman” for letting me unload this morning!.  Treadmill time.  Busy Busy weekend here.  I hope everyone is able to stay warm this weekend 🙂