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.

 

 

 

 

Getting a blood patch for CSF leak

This is the last part of A very long walk.

For those of you who have been reading along and commenting…there is a happy ending and an even better future

The PLAN was that my dad would drive me in my van with the seat laid flat, and my mom would follow in their car. Decatur Memorial advised my local hospital that I would be arriving later that day and that I needed a BLOOD PATCH.  They even printed all my records for me to take with me.  Yah should be pretty simple right?!?

joker-laughing-gif-3

NOT EVEN A LITTLE BIT!!!!!!!

While we did make pretty good time getting there, ( a little over 4 hours) the hospital could not just admit me because I had declined the ambulance transport, instead they tried to seat me in the waiting room.

When you go to the Emergency Room, they take patients in the order of the severity of their injuries, I get that… Unfortunately a “headache” doesn’t rank very high on the list.

I don’t know if you have ever had the kind of headache that comes with a spinal fluid leak, but I promise you, it’s enough to make you think you are losing your mind.  I still can’t quite explain it either.

Maybe kind of like the spins, after a night of too much drinking combined with someone smashing your head between two symbols while trying to speak to you in 3 different languages at the same time?

I really think I must have looked like I was losing my mind because I literally laid on the floor in the emergency room to try to stay horizontal.  I’m really not a germaphob, but even I would draw the line at that normally.

I was frustrated, my parents were frustrated why couldn’t you just do this blood patch thing?!?!?  I don’t remember all of the details that followed other than, I left and went home.  Well my dad drove me home and they both stayed at my house with me.

I think some of the difficulty was that it was a holiday weekend.  Another issue was that they were not sure where I was leaking cerebral spinal fluid from, and doubted the effectiveness of a blood patch if they didn’t find the right site.

Once the weekend was over, my mother was able to contact the neurosurgeon that had performed my thoracic laminectomy from a few years prior, and he said to bring me right into his office and he would do the blood patch immediately.

So what is a blood patch?

An epidural blood patch is an injection of your blood into the epidural space. The epidural space is not an injection into the spinal cord itself. The spinal cord and spinal nerves are in a “sack” containing clear fluid (cerebrospinal fluid). The area outside this “sack” is called the epidural space.

This is a great link explaining it in more detail.  What is a blood patch?

I remember being terrified to stand up after the procedure.  I had the doctor on one side of me and the nurse on the other, and I slowly stood up….. Nothing happened!!!!!  My head DID NOT explode, there was no projectile vomiting!!!  I was still sensitive to the light, but I could handle that.  OMG it worked!!!! and almost immediately too!

After going home, I still continued to chug coffee and laid in bed for the next couple of days….just to be sure.

For the next month or so, I would continue to get migraine like headaches, but they were not positional and could be managed with medication.

While I thankfully no longer suffer from those headaches, I plagued myself with the fear of walking alone.  When I walk in my house, I grab everything, walls, furniture, people.  When I walk outside, I always have someone with me.  What I did was to make myself a prisoner to my fear.

Prisoner no more

If you have been reading my blog posts for the last month, you know that I have been in a dark place both emotionally and physically.  I don’t want to feel that way anymore!

So I started to force myself to “hit the road” again…. God let’s hope not… I mean walking again.

 

Will you hold the flashlight?

So Yeah, I’m in a really dark place right now…. I chuckle as I say that because I think it almost goes without saying if you have talked with me recently, or read anything that I have written in the last month or so.

So now what?  What’s next?  What’s the plan?  How do I fix this?

I’m gonna stay right here for a little while and just be.  I am going to let myself FEEL each emotion GOOD, BAD, or UGLY and NOT judge them.  I am also not going to give myself a time limit on this.

I have mentioned before that I don’t “do feelings” well.  When I ‘mention’ it though, I say it offhandedly or in a joking matter, as I immediately begin looking for the next task or chore I am supposed to complete. (anything that I can do to “get out of my head”)

Over the last couple months, I have tried eating, drinking too much, smoking more, taking xanax and sleeping as much as possible.  If you have tried these things you know that they don’t really help, and are a temporary fix at best.  In fact, usually as in my case, they cause more problems.

So for now, I’m done running.  I need to sit in the dark a bit and just be, without a time limit.  I am, however, asking for someone to ‘hold the flashlight’ as I let my eyes adjust to the darkness that I have let consume me.

As I get ready to hit enter, I am acknowledging that I feel Fear.  I also feel vulnerable, and kind of weak at the moment.  I know these feelings will pass, but they are there.

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!!!

Feel the Fear and DO IT ANYWAY!!!!

Two months ago, I decided to start a blog…this entire post is about my experiences in the last two months as I have challenged myself to step out of my comfort zone.  (kind of like a roller coaster ride)

Today’s personal challenge was to make an unedited video and post it.  TBH,  I have been thinking about it for about a month now, and talking myself out of it for one reason or another……. but I finally jumped and did it.

Before you watch the video, if you choose to, let me again state that there is no real point to the video, except that I needed to challenge myself to do something I was afraid of and I did it and it didn’t kill me…..YET.… my stomach is still in knots….

I began my blog/ website (whatever the technical term is about 2 months ago.)  I originally had thoughts about writing about Multiple Sclerosis, but what did I want to write about?  That it sucks?  Yes it does!  Ok, so not that….

How do you make the most of your life in spite of having MS?   Better…maybe.   So I decided to start there.  Please keep in mind, I also just jumped into the blog thing.  I had never heard of wordpress, and while I have taken a couple classes in html programming, I have never put my knowledge into practice.  I created an account on wordpress.com, paid $8.00 a month upfront for a year and then my mind went completely blank.  Oh shit now what?  This was my first blog post. 

I laughed so hard that day.  I was proud of myself for FINALLY taking that first step.  It just felt good.  I  spent the next couple of weeks writing SOMETHING almost everyday, but I could never focus on just one subject, some posts were about MS, some were technology struggles as I continued to dig into blogging concepts, some were just random rants about life.

After being in the blogging world for about a month, I realized that what I was actually trying to do is to Put myself out there, and to connect with other people.  I have enjoyed chatting with other bloggers and hearing their struggles.  I have met other people that are living with autoimmune disorders and chronic illnesses, and learned how they deal with life on a day to day basis.  I’ve made new friendships with “millennials”, and I have learned alot about myself in the process.  Most importantly, I have learned that I want to learn everything about everything, and I need to slow down a bit.

I still don’t have a topic to blog about, or a niche, other than reaching out to people, talking about my life, and learning about others.  If any of that sounds cool to you, say hello, let’s talk and get to know each other.  I’ve put myself out there, as scary as it was, so now it’s your turn.  I don’t mean hey let’s talk on the phone everyday or anything, but I mean let’s talk…really talk about any and everything….ok well maybe not anything, but maybe you get my point…..

Ok so now for the infamous, Link to COMPLETELY POINTLESS FIRST VIDEO

Again, posting this was a personal challenge for me.  I can already think of 5,000 things I could have or should have done.  But there it is…..