Leaving your phone in a Lyft driver’s car

I walked into the hotel room at 12:30 am to drop off my bags and to park the wheelchair.

How do you reach your Lyft driver if you forgot something in their car?

When I walked into the room, “T” was awake, and still fuming about the height of the bed.  I unburied my tablet and asked T to use her phone.  Actually, I don’t think I asked, I think I just said I was taking it.  She  continued to complain about the hotel saying I needed to talk to the manager.  I put my hand up and said,  “we need to be awake at 4:30″, I can’t do this now.  I have to find my phone, or I won’t be going anywhere tomorrow”.

I headed back outside with phone and tablet in hand.  I sent several text messages to my phone hoping the driver might see them on a pop up.  I called Thing One to tell her that I had lost the phone and maybe I needed her to put a hold on it.  (My family each pays her $50.00 a month and we share unlimited everything on her account) I asked her to find a phone number for Lyft to report the loss.

She responded with the following screenshots:

This is all good in theory,   If you know your passwords.  I don’t!  My niece set up the Lyft app on my phone during my Boston trip over a year ago.  Crap ! Crap! Crap!

I filled out the Contact Lyft form using the hotel’s phone number and my email address for which I also don’t know the password.

ARGH!!!!!!!!!!!!!!!!!!!

I suspended myself from most of my accounts trying to guess the passwords.  Those that didn’t suspend me, sent a verification email to my LOST cell phone. SMH!!!!!

Just as I was going to surrender… I remembered that my neighbor works nights…maybe I could call her?   IF only I actually knew her phone number instead of only having it stored in my phone?!?!?!?

Ah but wait a minute…we are friends on Facebook..and that is the one password I remember.  I sent her a message on Facebook messenger asking for her phone number and then called her from “T’s” phone.  It’s probably a sad thing that she wasn’t surprised in the least that I needed “bailing out”.  I asked her to go to my house with her key, and I would tell her where to find my list of passwords.

When I logged into my email account there was a message from Lyft that the driver had found my phone.  Somehow I was able to contact him and beg him to bring my phone back to me.  Lyft charges a $15.00 returned item fee.  I paid that and tipped him $20.00.

At 3:15 a.m. I finally crawled into bed.  Exhausted

At 4:45a.m, there was a knock on the door.  It was the front desk guy Brent.  He had spent most of the night/morning outside smoking with me while I tried to get my phone back.  He promised that if he didn’t see me surface from the room by 4:45 he would “bang” on the door.  He had also set up coffee and set out some of the cold breakfast items even though they don’t start breakfast until 6.  Yes I wrote an outstanding review for him and the hotel.

Grace: “T” We need to get going

“T” (from the bathroom), I’m working on it.  I’m gonna need you to help carry some of my bags.

Grace:  Growl….BAGS?!?! As in multiple?!??!?! How am I supposed to carry anything while I’m in a wheelchair?!?!

LOTS of cuss words

probably even a few more

I don’t even remember her response.  I loaded all 3 of her bags and my one bag onto the wheelchair and headed to the lobby to arrange the LYFT.

I’m going to insert a copy of the review that I left for Rosebud Taxi Service which explains in more detail how we ALMOST missed our train.

I am from the Chicagoland area, where Lyft’s are frequently used and also usually readily available. I made the poor assumption that they would also be readily available in Holland, MI. While I was able to use their services from the Amtrak Station in Holland to my hotel where I was staying, I was unable to locate a driver to get to the station at 5:30 in the morning. My companion and I were both traveling in wheelchairs, so I began requesting a ride using the lyft app at 5 am even though we did not need to be at the train station until 6:30. From 5 to 5:45am I could not find anything. At 5:45, our hotel receptionist had found the number for Rosebud Taxi Service. I called and explained our situation to a very nice gentleman, who not only apologized profusely that they wouldn’t be able to help with both chairs on so short of notice, but also gave me a phone number for a competitor who might be able to help. Who does that?!?! Wow! After speaking with his competition, I don’t think they are any competition at all, their response to my dilemma was, “sorry nope nothing we can do.” I went back to trying to obtain a ride from lyft, only to have the one driver cancel the ride because in his words, “I’m 20 mins out for a 4 minute ride, not worth my time.” I did explain that we would tip very well and would probably have to be transported separately. He said, “ no I’m cancelling.”
I think I literally cried to my companion to please call rosebud back while I continued to try to use the Lyft app with no luck. After explaining our tale of woe again, the owner of the company stopped what she was doing in her personal life and came to pick us up herself with a vehicle large enough to hold both of our wheelchairs. I have to ask again, “Who does that?” I am so grateful that there are people in the world who will still go the extra mile to help “rescue” someone in trouble. I truly feel that she “saved” us. It is also important to note that she didn’t charge us any extra for our additional “luggage or needs”. I wholeheartedly give Rosebud Taxi Service 5 stars and would recommend them to anyone!

I didn’t feel it necessary to add that the owner and T could/did not help me load the wheelchairs or luggage into the SUV.  BUT that’s when the BREAK happened. Everything happened in such a rush, I honestly don’t remember the exact point it happened.  Maybe I dropped one chair on top of the other?  Maybe I closed the seat on my finger?  In fact I am sure I did both of those things.

In the short 10 minute ride to the train station, my finger turned black.  Oh shit…. The ONE thing Einstein said before I left, “DON’T BREAK ANYTHING!!!”.  There was no doubt that it was broken :(.  Didn’t matter though, we had a train to catch.

I didn’t even try to use the wheelchair other than for baggage on the way home.  The fact that “T” was able to though without the use of her legs also supports that it is doable.

In closing, other suggestions I have for traveling alone in a wheelchair are:

  • pack as light as possible
  • print your tickets etc Do NOT rely on your phone
  • TRY to get some sleep.  (I’m pretty sure the 1 hour I got is what lead me to getting sick when I got home)
  • Plan for back up options should your original plans fall through.  (multiple transportation and hotel options.)
  • Know your limitations
  • Call your hotel or transportation method to check heights, dimensions etc.  It would not be unheard of to ask for pictures of your accommodations before committing.

As a side note, while the ADA suggests a bed height of 20-23 inches in handicap accessible rooms, although, it is NOT a requirement.

0726192149a

 

 

 

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.

Just the facts please

I know I promised to write the truth, the whole truth, and nothing but the truth.  I am working on it, but first I want to share the tips and information that I learned during my adventure, so here are the facts.

In my last post, I gave the spoiler alert that it IS possible to go from the suburbs of Chicago to Chicago via the Metra train, and from Chicago to Holland, MI and back via the Amtrak train, while remaining in a wheelchair.  Did I do it?  Kind of….

Here’s the story…..

My FIRST challenge of the day was trying to figure out how to fit the wheelchair in my car. It does fit in the trunk WITHOUT the legs on it; however, there is no way that 2 wheelchairs, “T”, and my parents and I would all fit.  Although I had access to a car that would fit both wheelchairs, I did not know if “T” would be able to transfer into the other car since the seat was higher than mine.  I worked this out removing the legs of my wheelchair, and making my mom stay at home.  (she was disappointed)

First Piece of advice—Know your equipment.  It’s size and how it works.

We arrived at the Metra station almost 25 minutes early so I could survey the area. There was some confusion as to which track the train would be departing on, (the signs said one thing, and the map said another) but since I was getting on at the end or beginning of the line, (however you look at it) there would be time to change platforms if needed.

metra (3)
The sign says the opposite track

I opted to stay in the shade by the building rather than to cross to the side the sign advised.  (Yay I picked the right one)  Inkedmetra (4)_LI

 

 

When the train pulled into the station the ADA symbol for handicap accessible was clearly marked on the car.  What wasn’t clear was how I was going to get UP onto the train…

 

 

That question was quickly answered by not one but two of the conductors that got off the train to welcome me.  I must of looked nervous when I told them this was my first time traveling in a wheelchair, because they were both very quick to assure me that it was very easy and I would be an old pro, by the end of the trip.

I didn’t think to take pictures or a video of the lift at this point because I was too busy soaking it all in.  They were right though, it was easy.

metra (1).jpg

I rolled right off the lift ramp to a section of pull down seats for seniors or people in wheelchairs.

If there no one was using the seats, cyclists were able to park and tie down their bikes in front of them.

(There was a sign that clearly said they may be asked to move them if someone needed to use the seats)

I opted to stay in the wheelchair with my back to the wall of the car.

 

The bathroom was immediately to my left.  It also was wheelchair accessible, complete with a transfer seat and multiple safety bars.  I can’t speak for the position of the bars etc, as I mentioned in my last post.  I pulled as close as I could get, stood on one foot, and pivoted.  The location of the bars worked for me. 🙂

Getting INTO the bathroom was no problem.  For ME though, getting out proved to be a different story.  Again, the damn legs on the wheelchair….smh   Let me repeat that first piece of advice…. Know your equipment!!!!  I took the legs off the chair and maneuvered out of the bathroom wondering how I had gotten in there in the first place…

Check out the legs on this baby

From the front, they don’t look that cumbersome, but the side shot shows that with the legs attached, my wheelchair is as long as the kitchen table.

The train ride itself was smooth and a bit nostalgic for me.  Although a lot has changed since I rode the train to college in Chicago 20 years ago,  (they now have a rush hour QUIET car instead of a BAR CAR). The stops and sounds of the train were the same, but the scenery was so different.  I had forgotten how many times the conductors punch tickets, and that they called out the upcoming stop.

I spent most of my time talking to one of the two conductors and “people watching”.  There was a tiny altercation between two of the cyclists because one dumped the other’s bike while trying to retrieve his own, but it was over quickly.  In fact, if I made any recommendations to Metra, it would be maybe a bike rack instead of stacking, but who am I?

When the train pulled into Union Station, I waited until 90% of the people were off the train before heading for the door.  The conductor set up the lift for me, which again went very smoothly until I tried to roll off.  The “gate” that keeps you from rolling off the lift was stuck and neither of us were really sure how to operate it.  Eventually it opened and I was on my way.

Second piece of advice- allow extra time and be patient.

Rolling into the station was a work out for my arms, but it was doable.  I’m glad that I waited until the train was almost empty, because I didn’t feel rushed as I SLOWLY rolled inside.  I had plenty of time to go outside, find something to eat, and explore the different levels of Union Station.  Although all levels of the station could be accessed while in the wheelchair, the “general” signs were vague at best.  (in my opinion)  Several times I would follow a sign to go somewhere and end up at stairs or an escalator.  union station (5)

If I wasn’t able to backtrack on my own to the nearest ramp or elevator, there were plenty of people to ask for directions, both travelers and employees.

Let’s talk about ramps for a minute…. First of all…..

THERE ARE MANY!!!!

This slideshow requires JavaScript.

a narrow hill road inside the forest

The more I used them the steeper they began to appear.  I was literally chanting “I think I can, I think I can” as I was climbing up the last few.

Believe it or not, going DOWN the ramps gave me more trouble.  I NEVER thought about the rug/wheel burn on your hands going downhill.

*Advice alert*— If you are “driving” a manual wheelchair….WEAR GLOVES!!!  Apparently they sell finger-less gloves for exactly this purpose.  Bonus tip- carry hand sanitizer with you, my hands were black…..

union station (4)

A visual reminder to wear gloves

For the most part, even though everyone was too wrapped up in their own objectives to notice things that were happening around them, only a small number of people almost ran into me.  Those that did were quick to apologize.  Except  for the girl that turned on a dime, and tripped over my legs in the process, causing her drink to go everywhere.  I’m going with… Karma…she didn’t even apologize….smh.

I found that if I followed somewhat closely behind someone going in the same direction, even though people didn’t see me, they had already sidestepped the person they could see in turn missing me.

As I waited in the “assisted waiting area” I received a call from “T”.  She yelled, “This hotel is NOT going to work!  I can’t even get into the bed it’s too high.” I responded, ” UM what do expect me to do about it?”  Followed by, ” Ok, then look for another hotel in the area.”  I know that I said I would tell the truth, the whole truth….. but I would have to write an entirely different long winded post about the rest of that conversation.  In short though, I told her I couldn’t help my train was boarding and to let me know what she figured out.

Boarding call for Amtrak 370 from Chicago to Holland Michigan

amtrak (4)

Although their website says “Redcaps” (people employed by Amtrak wearing red shirts) are available EVERYWHERE to help people with mobility issues and with luggage, the first time I actually saw them was standing right in front of the platform.   In fact, they were all in my way, barely moving as I rolled out to the platform.  I am glad that I had the foresight to figure out how to my carry a bag myself because no one was eager to assist.

*Advice alert*  pack only what you need and/ or can manage on your own

I rolled down the platform until I saw a conductor who told me where he would be setting up the lift.

Boarding with the lift was a piece of cake until I tried to fit through the door.  DAMN legs….grrr.  Once I took them off it was no problem.  Handicap seating was immediately inside the door of the car, on both sides of the train.  There was even a luggage compartment on the floor that I could reach.

Once the train departed, I decided to sit on the Amtrak transfer seat instead of the wheelchair seat.  I shouldn’t have.  While sitting in said seat I was traveling backward.  It took no more than 20 minutes for me to remember why I don’t do backward.  Yes I hurled :(, but yay I made it to the bathroom. 🙂

Once that nasty business was finished I tried to roll to the Bar or cafe car for some ginger ale, only to find out that the wheelchair would not fit.  It was close.  😦  Plan B.

I thought I would try to distract myself from my stomach unhappiness by posting an update on my Facebook page, msgracefulnot.com.  I did not expect to see this video appear. …… and the flood gates opened…….  (If you are new to “my world” the video is of my recently deceased GSD, SNUFF.)  Back to the bathroom.

Round 3

I sent “T” a text to see what she decided to do about the hotel.  She called instead of texted me to complain for 20 minutes.  Her friend helped her into the bed  before she left, and we would indeed be staying there.  I said, “Okay, see you at 11” and hung up the phone.  As I sat there reviewing the days events in my head, I decided to walk to the Bar car.  Yes I WALKED to the cafe and justified it by telling myself that I wouldn’t “learn” anything else for the next few hours anyway.  I would just resume my test when I was going to detrain, disembark, get off…not sure what it’s called.

amtrak (16)

When I entered the bar car, I was informed that the closest thing they had to ginger ale was CLUB SODA.

Never having tried it before I decided to give it a try.

It is NOTHING like ginger ale……. ewwww  😦

After I returned to my seat, I stopped the conductor as he passed by to see if he would mind answering a few questions for me.

He didn’t mind.

I briefly explained my “test” and told him that I was not able to fit through the aisle with my wheelchair to go to the Cafe Car.  I asked,  “What would someone in my position do, especially if they were on a longer ride than me?  He responded, “Well people in wheelchairs generally don’t travel alone.”…. My FACE said, “and then you met me.”  He said if someone needed something from the CAFE, he would happily get it for them…. shrug ok?

I have several suggestions for Amtrak should they ever decide to update their handicap accessibility information.  Cafe access is on my list, if I ever do send them my suggestions, I will provide a link here if that happens.

My conclusion of whether or not the trains are accessible for wheelchair travel is Yes, they are.  I am not saying that it is easy or super convenient, but it is doable with enough planning.

2000 words already?  I have only just begun….smh  I am going to end here for today.  If you are interested in hearing about all the dramatic parts of the trip, please check back next week where I will tell you about the drunk guy harassing me, how I broke my finger, and why I almost missed my train on the way home.

Thank you all for spending your time with me.  Maybe some of the information I share is useful?  I appreciate all of your comments and feedback!

 

 

 

Healthy resources for chronic illnesses

Last week I shared, my list of Not your Typical Blogger Awards recommendations.  I mentioned in the post that I also had recommendations for chronic illness bloggers that were inspirational and motivating that I would share if requested.

As I continued to reread posts from February of last year, I realized that I had completely forgotten that not only did I actually write a little about MS in February, but I also made a video about being newly diagnosed> I was also fortunate enough to have some of those very same inspirational and motivational bloggers do guest posts on my blog.  Their names and links to their blogs can be found here.

I would like to add a few of the chronic illness bloggers that I have also begun following since that post was written that I also find very motivating and helpful.

First is Terri, from Reclaiming Hope.   Terri lives with Fibromyalgia, and offers great tips on total wellness, sharing advice on complete wellness encompassing emotional, social, spiritual, occupational, intellectual, financial, and physical aspects.  Whether or not, you suffer from a chronic illiness, I think you may find a lot to gain by visiting her site.

Next up is Heather and Dizzy from Dinosaurs, Donkeys, and MS.  Heather was diagnosed with MS a only a couple of years ago, but you would think she had been living with MS for a long time, based on the amount of information she shares.  Heather shares information about the OMS program, many exercising techniques, and relaxation techniques through her stories with her Donkey Dizzy.  She has also begun a podcast featuring two herself and two other MS bloggers from the UK.  If you have a minute, potter over  to her page, again you will not be disappointed!

Also from the UK is Caz, the author of Invisibly Me.  For a quick glimpse at her personality, check out her post, This and That.  As with most invisible illnesses, you wouldn’t know that anything is “wrong” with Caz, by looking at her, but she takes this one step further by sharing tips on how she continues to fight and rise above the trials she faces.  I especially like her post, What my invisible illness(es) have taught me. If you have another moment, (while you are in the UK :P) take a few steps over to her page.  About once a month she will share frugal finds for things she has found that help beat the heat and work on relaxation.

While I’m taking you around the world (well yah the internet is) I’d like to take a moment to visit Vancouver and talk about Amanda from Walk a Myelin* My shoes Not only does Amanda talk about the realities of living with Chronic Illness on her blog, but she is in the process of writing a book, and often talks about the other side ( caregivers and support people for those of us living with an invisible or chronic illness). To keep in line with the subject I wrote about earlier with being newly diagnosed, I would like to share this post written by Amanda as a place to start.

It is so easy to fall in with “the bad crowd” of people living with chronic illness.  By “bad crowd”, I don’t mean bad people, I mean people that spend more time succumbing to  their diagnosis and limitations than they do focusing on the positives in their life or are resigned to let the disease consume them.  (I think we may all go there from time to time.) Personally, I find it so much more helpful to spend time with people that while maybe struggling, continue to fight each day.

I hope you can take some time to visit the above mentioned websites, and that you find them as helpful as I do!

I have showed you mine, will you show me yours?

Do you have any websites or bloggers that you follow that share tips for dealing with chronic illness?  I would love to hear your thoughts

Maybe you can share some recommendations that you have?

 

Makes you wonder, “Who’s the Boss?”

“Kind of makes you wonder, who the boss is here, doesn’t it?” This was the last thing my neurologist said to my son in law as we left his office on Thursday.  You see, being on the MS drug Tysabri, requires me to perform three actions each year to remain on the drug.   I believe the three things I am required to do are CYA (cover your ass) for the doctors and drug company, though they present it as for my safety….shrug

A little bit of the back story here.  When Tysabri first came out on the market, it had to be recalled twice because the risks outweighed the potential benefits.  (it killed people)  Ok while it didn’t kill people itself, it caused some to develop PML (Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).) which did kill people.   Either way it had to go.

Back on the Market

I began the drug shortly after it was released the 3rd time.  (YAH sign me up?!?!?)  SMH, actually for me, the risks were nothing in comparison to the potential gains. I was going downhill fast.  If you would like to read about how/why I started Tysabri, the first post of the “series” can be found here.

When they released the drug for the 3rd time, doctors had to require patients to meet the following conditions each year to remain on the drug.  The first is that they have to have an MRI of their brain yearly to look for signs of PML.  The second is that they have to have blood tests to determine if they are positive or negative for the JC virus.  Finally, they have to see their neurologist at least once a year to be reminded of the risks, and that the longer you are on Tysabri, the more likely it is that you will develop PML.

Having completed the first two requirements this summer, meant that I needed to see my neuro.  Not an easy feat considering I still can’t drive and his office is 2 hours away in Chicago.  Thankfully, my son in law said he would take me and spend the day with me.  (I really am blessed)

Z arrived right on time to pick me up.  During the two hour drive to the city, we discussed (debated) the pros and cons of Technology.  I will write more about that another day though.  Basically, I agreed to let him tell me about some apps that may make things easier for me, if he agreed to let me play devils advocate about the potential risks.  I think we both learned somethings.

The wait to see my doc was short.  He came to the waiting area and said, “C’mon Grace follow me”.  He didn’t notice my boot until, he turned around to see how I was walking.  (nothing like a having the pressure of having someone judge your balance as you try to balance) smh  He asked, “What happened now?”.  I briefly told him, he shook his head, and we entered the exam room.  We all sat down, and he said, “I was surprised to see you on the schedule, I never see you unless something is really wrong.  What’s going on?”  I chuckled, “just doing the yearly thing.”

First we reviewed the MRI of my brain.  There were no real changes to report, other than a little bit of atrophy and brain shrinkage.  (this also happens as we age, and was nothing major)  I did tell him about the newer symptom of “spins”, but only that I wanted him to put it in my chart, nothing else at this time.  He asked if I wanted to check disease progression in my spine with MRI.  (most of my lesions ARE in my spine)  I declined.

Next were the JCV test results.  The results were indeterminate.  (not negative or positive, literally indeterminate)  ok?  NEXT?

Doc: “You don’t want to talk about switching medications?”

Grace: Nope!  Thanks though

Doc:  “you do know that there is a new drug out  called OCEVERUS?”

Grace: Yep!

He began to shake his head again.  So I pulled the pamphlet out of my purse, and said listen Doc…let me be honest with you…. “I’m aware of the drug and the benefit of only having to have an infusion 2x a year, however at this time I’m just watching”.  I continued with:

  1.  I’ve done my stint as a guinea pig in the clinical trials for Botox
  2. It’s still too new, and carries the same risks as Tysabri.
  3. Basically the amount of time I “lose” getting this drug is the same amount I lose getting Tysabri ( Oceverus 2x a year 8 hrs each time vs.  Tysabri 12-13 x times a year 2 hours at a time)  Besides, I have a port in my chest that has to be flushed every thirty days regardless of whether or not it’s used, so it would be the same
  4. I also explained that I used my Tysabri infusion to meet my Medicaid spendown each month (but more on that another time)

He asked if the surgeon was going to send me to physical therapy after the boot came off.  I think I surprised him when I not only agreed to use a wheeled walker, (if Medicare will cover it of course) but that I would also like to go the PT, not only to aid my foot in healing, but to help with my balance and gait issues.  I asked HIM to write the prescription for both (pt and the walker) knowing that the likeliness of insurance covering both would be increased if they were given more reasons to approve it, (gait, balance issues, strengthening etc) than just “to aid in post op recovery”.  Isn’t it sad that it’s all a “game”?  Fortunately? for me I’ve been playing a long time.  SMH  We shall see.

Before I left, I did ask him for his opinion on the  various “diets” that are out there and how they may affect MS.  I know that I am not easy to “work with” sometimes, but that doesn’t mean I don’t want to do everything I can to fight this monster.  I just don’t believe that taking more drugs is the way to do it.

The diets I mentioned were the Wahl’s protocol, Paleo, and the Ketogenic diet.  I am not sure which if any I will follow, but I am in the process of learning about all three.  I have to admit that even a simple reduction in carbs and the addition of colored veggies to my to my normal SEE FOOD (see food and eat it) diet would be a good place to start.

Before we got up to leave, the doctor asked me if I would be willing to talk to other patients with MS.  I told him I do, all the time.  He was inquiring in more of a professional  capacity to which I responded that I was happy to  anytime, if he wanted to give someone my name and number, but never representing the hospital or his office.  (My use of the F bombs would disqualify me from that position.)

In closing,

The answer to the question of who is the boss…. I am!

It’s my body, my right, and my choice.

I am very fortunate to have a doctor that understands my feeling on this.  He also knows that while I do take some, I hate taking medications of any kind, and am always very reluctant to call, so when I do, he gives me priority.  I hope that if you are dealing with MS, or another chronic illness that you have found a doctor that is willing listen to and respects your opinions as well.

*The featured image is the inside of my daughter’s Beast for work….but doesn’t it make you wonder who is in control, or responsible?