A little help please

In my last post, I talked about my difficulty with getting to the bar car on Amtrak while in a wheelchair.  At this point in the trip I was pretty exhausted, and I probably drifted off to sleep.  I say probably because one minute I was alone, and the next there was a hand on my shoulder and a voice asking, ” I am going to the bar car, can I get you anything?”  The voice was coming from a fellow passenger.  Hmmm surprising. Nice, but surprising.  I said, “No, but thank you for asking.”

I was lost in thought about the seemingly selfless gesture when he returned and asked if I minded if he sat and talked.  I responded, “No, not at all.  Thank you again for your offer to get something for me.”  He seemed nice enough.  We chatted for maybe 15 mins about where we were from and where we were going.  It turns out that we were both going to Holland.  My phone rang, and I excused myself from the conversation saying that I needed to take the call.   We both said, “goodbye, enjoy your trip.”

The phone call was from my father.  “Are you still alive?”, he asked.  I told him that I had learned a lot so far, but I was exhausted and would send a text when I made it to the hotel.

Random stranger guy came back again, and AGAIN,each time sitting closer and closer to my seat offering to do more and more for me.  “My brother is picking me up from the train station, we can throw your wheelchair in the back of the truck and take you to your hotel”.  “Are you sure I can’t bring you something from the bar car?”  Then the touching began.  I didn’t say anything about the first brush across my knee.  I assumed accident.  Then he placed his hand there and didn’t move it, until I did.

EXCUSE ME?!?!  “I think we are done talking! I have told you that I have a boyfriend and don’t feel that I have encouraged this in any way, you should go back to your seat now.”  He gave me an expression that made me uncomfortable, but stood to walk away.  Before leaving he said, “well at least let me help you off the train in Holland.”  I growled, “No, thank you, I’ve got this!”

I have never been more grateful for the ability to use my legs.  Have you ever found yourself in a position that you wanted to leave, but physically could not get out of?  How would you protect yourself if you were confined to a wheelchair?  What had I gotten myself into?  What was the train station in Holland going to be like?  Indoor? outdoor?   Would there be ample lighting?  What if the Lyft driver wasn’t there when I got there?  Do you remember my post about, SOS Messaging?  I mistakenly thought that it was available on all phones.  I’ve gotten a new phone since I dropped mine in the toilet in Italy, and LG phones do not have this feature.  😦

I called Thing One and told her about my dilemma.  We agreed that she would stay on the phone with me from the time I got off the train until I was safely in the LYFT car.  I debated with myself about whether or not to involve the conductor, until random guy walked by AGAIN.  “See you in Holland”.

No more debate, I stood up and walked to the Bar Car to find the conductor.  ” I don’t know if he thinks its funny or what, but one of the other passengers has had a lot to drink and is starting to give me the creeps.  We are both getting off in Holland.  Can you please tell me when we are like 15 mins away so I can call my ride?  Also I would still like to use the lift to get off to buy myself some more time.”  Before heading back to my seat, I grabbed 3 cups of coffee.

For the last hour of the train ride either the conductor or the junior conductor walked through the car I was in every 10 or 15 mins.  As promised, 15 minutes before we were scheduled to arrive in Holland, the conductor said it was time to request my ride.  The Lyft app said the driver was 20 minutes away.  😦  Deep breath Grace you got this.

When the train arrived in the station, I hesitated to move until I saw the conductors setting up the LIFT.  Drunk guy was no where in sight, and I could see the lift driver standing by his car.  I told the conductor I felt confident that I would be fine, apologized for being any trouble, and thanked him for his help.

As the Lyft driver was loading my wheelchair into his trunk, I could see drunk guy approaching quickly.  I said, ” I don’t know him, he is NOT with me, can we go?!?!  Before he could get in the car, drunk guy said, “You be sure you take care of my friend”.  Harmless enough, but please Let’s go!!!!!!

I confirmed the hotel address with the driver, and quickly called Thing One to tell her I was ok and to ask her to text my dad.  When I hung up, the driver asked, “rough night?”  I replied, “Yeah, you could say that, and I have to be on the train again at 6:30 in the morning.” 😦  He asked, “Are you using Lyft to get to the station tomorrow?”  I responded, “Yes, it’s the only thing I could find as far as transportation.”  He advised me to start requesting a ride at least an hour before I had to be there.  Most Lyft drivers were from Grand Rapids (1/2 hour away) like himself, and I might have trouble finding a ride that early….. Oh yay.

When I arrived at the hotel, I put my bag on the wheelchair and headed for the smoker’s bench.  The desk clerk, Brent, was outside vaping.  I told him I was “the late check in”, but needed to “chill” for a few before going in.  I reached into my bag for my phone, but it wasn’t there.  Oh No! You have got to be kidding me!!!!!!  Brent let me use his phone to call mine and even walked with me around the area I was dropped off at in the parking lot.  No luck…. SON OF A …….!!!!!!!

I hoped I remembered to print all of my ticket information, but if I didn’t it was all on my phone.  I was sure I left it in the Lyft driver’s car, but how would I reach him? I spent the next 2.5 hours trying to retrieve it….smh  Did I mention it was 12 o’clock in the morning?!

Before I tell that story, I would like to ask for your opinion.  I asked earlier “Have you ever found yourself in a position that you wanted to leave, but physically could not get out of?”  Were you able to keep your composure?  How do you protect yourself if you have a physical disability?

The drunk guy was probably just that.  He was probably a nice guy even.  I think I had stronger emotions because I was out of my element so to speak.  Or maybe I under reacted?   If you would please take a minute to share your opinion/experiences with me.

Your mission, should you choose to accept it

If you suddenly found yourself  without the use of your legs, would your life stop?

There was a point in my life that I would have said being in a wheelchair in any capacity would have been the end of my life. In fact, when I was diagnosed with Multiple Sclerosis almost 20 years ago, and the neurologist pushed a wheelchair across the room saying I should “get used to it”. I truly thought my life was over.   At 26 years old, I was so naive.

Fortunately, over the last 20 years my time spent in a wheelchair has been minimal.  I haven’t required it’s daily use in years (other than when I was recovering from a surgery)

So what is this mission thing I am talking about?

The mission:  Travel from Northern IL to Holland, Michigan and back without the use of my legs.

Why am I doing it?

The reasons I decided to do this are ever evolving or changing. In my post, Where there is a Will there is a Grace, I explained that my daughter’s mother in law wanted to come visit the grandbabies.  I didn’t want to drive to Michigan and back to pick her up and drop her off so I suggested that she take the train.  Everyone was concerned that the train’s were not wheelchair accessible.

This is where my reasons for doing it began to change.  I am no longer doing this to avoid a long drive.  Past experience has told me that handicap accessible does not always mean handicap accessible, so I volunteered to “test” the route first.  To make it an accurate Test, the circumstances need to be the same.  So with the exception of driving myself to the train station, ( I would be willing to pick her up and drop her off) I have made all of my travel plans from what I felt was the perspective of someone who does not have use of their legs.

Once I began making reservations, my reasons for making the trip began to change again.  Each roadblock or hurdle that I came across, (I will explain more below) has made me more determined than ever to prove to myself that when or if the day comes that I am in a wheelchair full-time, my life will not be over.  I also hope to share what I learn with anyone else that might have the same fears about traveling like this.  (yes I have realized there are many things that are making me nervous)

My original plan was to drive to the Metra Station in Harvard, ILAs I mentioned before, getting a ride to and from the train station would not be an issue for T or for me, so I decided to allow myself to drive there and begin the test once I arrived at the train station.)   From the Metra station in Harvard, I would take the 2 hour train ride to The Chicago OTC (Ogilvie Transportation Center) where I would need to TRANSFER to Chicago’s Union Station to catch the Amtrak Train leaving for Holland at 6:30 pm arriving at 10:40 pm

:/ What does transfer mean, and how would I be doing it?  Google maps says that it’s a short 5 min walk.  For who?  (Actual distance is .3 miles.)  Are my arms strong enough to roll myself that far?  Would I be able to navigate through crowds with a wheelchair, or would everyone ignore me as they rushed about their lives?  What if it was 100 degrees or raining outside?  Still undecided if I had the guts to try this on my own, I found a link to Open Taxi’s which would take me from Chicago’s OTC to Union Station for $7.00 if I needed it.

Assuming I made it Union Station in one piece, I would need to be at the Amtrak station one hour before departure…. Ugh.  Since trains only leave Harvard every couple of hours, I would have to be on the train by 1:35 pm to make it to Chicago on time 😦  Maybe I look for a different way into Union Station?  It was already going to be a long trip, did I really want to spend more time sitting and waiting?!?  I decided not to make a decision about the Metra just yet and went back to exploring the Amtrak portion of the trip.

The Amtrak train would arrive in Holland at 10:40 p.m., but the train from Holland to Chicago did not depart until 6:40 the next morning.  That meant getting a hotel for the night.  (maybe paying me $200.00 to drive there and back would be cheaper after all?)  In effort to keep the costs down, I found a “cheap hotel”, but they didn’t offer shuttle service.  How would I get to the hotel in the middle of the night? Was there a different type of taxi for a passenger in a wheelchair?  Maybe Lyft?

A quick google search, showed that The Lyft app allows passengers with accessibility needs to enable Access Mode. In certain markets, when Access Mode is enabled, passengers may request a vehicle that is specially outfitted to accommodate wheelchairs.    (Not very reassuring)  To give them credit though, Lyft’s website does provide step by step instructions  complete with pictures explaining how to request wheelchair access.

I called everyone back to discuss the total cost of the trip to make sure they were willing to cover it, and got confirmation to book the hotel and train tickets. I went back to the Amtrak site to book the tickets, but did not see a link to request assistance for traveling in a wheelchair.  Fortunately, the site does have a virtual assistant that does make it relatively easy to book online. I chose to call Amtrak instead though, because I had other questions.

  1. If the train station is unmanned, how will anybody know that I am waiting on the platform, or that I need help?
  2. Are all of the restrooms also handicap accessible?

Surprisingly, I learned they are not.  While the customer service agent assured me there are handicap accessible restrooms on the train, not all are, even though those same cars have wheelchair seating.   Interesting?  I will have to investigate that further.  (It is a 3 hour long ride after all)

I booked our Amtrak tickets, made a hotel reservation, and checked in with a friend whose hubby used to drive for Lyft.  All that was left to do was to purchase Metra tickets.  I looked into a different Metra station that had trains running into Chicago hourly.  Sure I would have to drive further, but again I would be willing to do the same for T, so I consider it “allowed”.  After I downloaded the app to be able to purchase tickets, my mind started drifting back to 20 years ago when I took this same train to go to school in Chicago.  More questions…..

  1.  Didn’t I always have to climb stairs to board the train?
  2. Was there a special car for wheelchair seating?  How would I identify it?
  3. How would I pay for parking and how long was that payment good for?  (I used to have to rollup dollar bills and shove them in a machine.)  Hmmm, maybe there is an app for that too?

My questions made me start to second guess myself.  Ut oh, MORE RESEARCH!  I went back to Metrarail.com.  Again, the link about traveling in a wheelchair is not visible on their homepage, but using their search box and digging a bit produced a 26 page downloadable guide.  The guide answered my first two questions, though I have begun to make myself a bit nervous.  I’m in it now….

Parking still remained a question though.  I finally found an app that you could pay for parking online or from your phone.  Unfortunately, that same search informed me that there was no overnight parking at any of the Metra stations in Elgin…..   Grrr.

I am very grateful that my parents are as helpful and supportive as are.  I am going to park my car at their house overnight, and they will drive me to the station and pick us up the next day.  They will also be keeping D.O.G. overnight for me, although I don’t think I remembered to actually ask for that part yet.  Doh!

Everything is booked.  Adventure awaits!

As I started to think about packing, I realized that the only backpack I own holds the legs to my wheelchair when I am not using them.  How do you carry a purse or any kind of luggage if you are using your arms to push yourself in a wheelchair?  Do most wheelchairs have legs on them, or are they designed taller so your legs don’t touch the floor?  If I allow myself to worry I will never do this, so the new answer is One thing at a time.  I am sure I will make a lot of mistakes, but that’s how you learn right?

One last thing I found that I will have to investigate further when I get home, (not enough time now) is that the Regional Transit Authority or RTA  provides free one on one ADA training programs for using public transportation.

 

 

 

 

Laughter is the BEST Medicine

Yesterday I let pain and confusion cloud and take over my judgment and mood.  I was so focused on what I couldn’t do that I forgot to use all the powerful tools I have at my disposal…..the biggest of which is the ability to laugh at myself.

I want to share some things with you that I hope will make you laugh, smile, or at the very least shake your head.

I wrote before about all the prep work you should do before surgery,  While I was getting groceries …….. a woman walked up to me and said, “Excuse me ma’am. I hate to tell you this, but your boots don’t match.” your boots dont match.jpg She was right.  I have no fashion sense.  It made me laugh.  Thank you random friendly stranger.  🙂

I was also racing around to make sure my house was clean, nothing to impede my movements in a wheelchair, etc.  I lost my balance, tripped, or something and came down hard ON MY GOOD leg….smh

20180903_191007

When I was trying to pull myself up (very difficult with the stupid boot on) I again lost my balance and hit my eye on the counter giving myself a black eye.  I swear you can’t make this shit up!!!!  I can only imagine what I looked like when I walked into the surgery center.

 

 

After surgery, when my dad was telling me what the doctor said and did, he told me and I quote, “So the doctor took off your big toe, reamed holes in your foot and then your toe, they put in a stud and then screwed your big toe back on”.  I was horrified, but I believed him. That is SO NOT what they did!!!!!  The sad thing is, when I was explaining to a couple of friends what the surgery was for, I told them exactly what my dad had said.  If they were laughing at me they didn’t let it show…..SMH….. I hope my father remembers he will be having his other shoulder replaced next year and karma is a bitch! 😛

plateBefore I continue, I THINK this is what they DID do to my foot.  Again, I won’t really know for sure until I follow up on Thursday.  I will try to take a picture also, but I have a tendency to pass out or get sick when I see or feel pain.

Ok so now let’s talk about hindsight being 20/20.  Before surgery, I wrote about “practicing” for recovery.  I went through my entire house with the wheelchair making sure it fight everywhere I would need to go.  I FORGOT that I would have a leg support on the right side of the wheelchair which adds almost 3 feet to your turning radius.  DOH!

20180908_123449

This has come in handy though for getting my dogs to move out of the way.  Poor things haven’t left my side since surgery.

20180906_083000

 

 

 

 

20180908_122505There was also this ONE time, I forgot the catheter bag was hanging under the wheelchair when I was trying to transfer back to my bed.  I only forgot ONE time, and I don’t know if I will ever find it funny, but I don’t mind if you do.

 

I’d like to share a couple more pictures, but first I need to thank everyone for all your thoughts, well wishes, moral support and encouragement, and a special thanks to my dear friend Jeri for the 4 containers of ice cream you delivered!!!!!!!

swollen

 

This picture is from this morning, and although, it looks kind of gross, the swelling has gone down tremendously from the first couple days, and I do have faith that there are better days ahead.  BABY STEPS!!! literally with my GIANT boot.

Chris and Tom commented earlier about signing my cast.  I am not that technologically oriented to figure out how, but if you can feel free…. It’s a great reminder that I am not alone 🙂

My best friend Gary virtually signed my cast from my wrist surgery a couple years ago.

tiggerifficI hope you all have a great weekend!!!!!!

20180908_132453

Too Many to count

I’m not just talking about the number of speeding tickets I have had. (although that number almost equals the number of years I have been driving) YIKES!

I’m talking about the number of times I have been “put under”.  When you get general anesthesia, you’re “put under,” which means that you’re totally unconscious and immobilized. You “go to sleep” and don’t feel, sense or remember anything that happens after the drugs begin to work on your system.

My very first surgery was having my wisdom teeth removed when I was 16.  Between that time and my most recently scheduled surgery (having screws and a plate put in my right foot on 9/4/2018)  I have lost track of the number of times I have been put under.

I really do need to keep better records.

The most notable surgeries were:

  1. an emergency C-section with Thing One
  2. a hysterectomy
  3. CMC joint replacements in both my hands
  4. the power port being placed in my chest (on valentines day…smh)
  5. a laminectomy of my thoracic spine
  6. and my every few months Botox in the BLADDER surgeries.

You could almost call me a professional surgeree?  I don’t really think that’s a word though, so let’s stick with patient.

I’m not writing this post to elicit sympathy, but rather to share some of the things I have learned over the years to help me prepare for going under.  For me, preparation for surgery begins more than a week before surgery.

The FIRST thing I do is take a look at the amount of recovery or down time that the surgeon is recommending, then DOUBLE IT.  (Most people probably don’t need to double it, but I’m going with MY past experiences, AND the whole plan for the worst, but hope for the best scenario)  Make a list of all the things that you are responsible for during that time period and begin to look for someone to COVER for you.  Your list should include the basic necessities of adulting like eating, bathing, paying your bills etc.

In my case I have purchased enough groceries for a month.  I won’t claim that they are the healthiest options available, but this will allow me to be as self sufficient as possible.  All of my bills are set up for automatic bill pay.  I have hired someone to take care of my lawn.  My kids will be grabbing my mail for me a couple times a week etc.  As far as bathing goes, I just won’t do it.  I’M KIDDING!!!!!  I have a shower chair and after the number of  medical procedures I have had performed, I have no modesty left, so my kids and some close friends are helping with that.

shower clothsIf you are not comfortable sharing that much with your family, they do sell bathing wipes that you can use by yourself.

While on the subject of modesty, BEFORE surgery is also a good time to PUT away anything you might not be comfortable sharing with friends or a caretaker.  (Don’t put spare cash for food delivery in the same drawer you stash, “OTHER” things.  If you catch my drift.

Most importantly, don’t try to be a hero, super or otherwise.  Just because you THINK you can do something, try to error on the side of caution, at least while you are on pain meds.  If you wouldn’t do the task after drinking a 12 pack, maybe wait just a little bit longer or ask for help?!?!?

drivingWhile I have figured out, kind of, how to drive with my left foot, I will be relinquishing my keys for the next couple of months.  While I have proven to myself that it CAN be done, it’s really not safe and is against doctor’s orders.  I would hate to have the issue come up if I had a flat tire, or worse was involved in an accident.

I have more that I would like to share about preparing for surgery,  especially about the night before and day of, but I still have more to do and a few days before surgery, so I will write more later.

Have you ever had surgery?  Can you think of anything I have missed?  Any funny stories to share?

There are flashlights everywhere

Last week?  I think it was last week, I asked someone to hold the flashlight for me.  I don’t know why I was so surprised by the number of offers I received, but I  was genuinely and pleasantly surprised.  Thank YOU for that!

In my post I talked about how I don’t do “feelings” very well, and that I was going to take some time working on that.  What I have discovered is that I am not very nice to myself.  My ‘inner’ voice says the most atrocious things to myself.  I call myself fat.  I call myself lazy.  I call myself mean, and to be honest, I am very mean TO MYSELF.  “you should have done better , Why didn’t you try harder? You should have been able to fix that!!!”

Did I mention pretty fucking mean?  The thing is the things I say to myself, I would never say to another human being.  EVER!.  So why is it ok to say it to myself?!?!?  I’ve been spending the last week trying to find the answer to that question, and I have come up with…. IT’S NOT OKAY!

That’s as far as I have gotten with my observations.

I am very mean to myself and IT IS NOT OK!!!!!!!!!!!!!!!!!!!!!

I have tried the whole stand in front of the mirror and telling myself that I am a warrior thing, which resulted in my spitting toothpaste on the mirror.  When I finished cleaning that up, I did realize that I was laughing.  I also came to the conclusion that laughing makes up two of my strengths.  1.  I have a good sense of humor.  AND 2.  I am able to laugh at myself.  Those are both good qualities to have.

A third “positive affirmation” that I was able to come up with, is that I am good at making people feel good about themselves.  It truly makes me happy to watch someone grow and stand taller.  I need to spend more time thinking about how I do that and apply it to myself.

Before I go, I want to thank you all for your comments and messages, it really does help to know that I’m not alone here in the dark.