Hey, I’m doin alright….

I woke up this morning in a bit of a panic thinking,  “Que dia es hoy”?

I’m not sure why I always ask that in Spanish, but I do.

What day is today?!?!?!?

My brain raced through all the things I have or had to do this week.

Check Check Check.

Deep sigh of relief…

Ah It’s Friday!  I don’t have to be anywhere until 3:15 pm!!!!

I closed my eyes, prepared to go back to sleep, but then it hit me.

Today’s a GREAT DAY TO BE ALIVE!!!!!

I quickly got out of bed and into the wheelchair to head to the bathroom. Next, I wheeled to the kitchen to hit the button on the coffee maker, and finally to the porch to let D.O.G. out.  As I sat staring at the coffee maker urging it to produce faster, another thought popped into my mind.  At yesterday’s appointment with the orthopedic surgeon, I was given the go ahead to begin taking steps as tolerated while in the CAM boot.  I  jumped up and down!!!! (figuratively not literally)

I quickly raced back into my bedroom and took off the surgical shoe that I sleep in, and donned the knee high cam boot that I used to abhor.  THEN

I STOOD UP and took a step  WOW that hurt!!!

I sat back down in the wheelchair and headed back to the kitchen for Coffee.  (That was two hours ago and I’m still on a It’s a Great Day to be Alive High)

Yes the foot thing is great news, but to be honest it’s not the reason for the high.  My non drug induced High is because I survived a really rough week and lived to tell about it.

I almost thought about turning on the video camera to tell you about the week I have had, because I can talk so much faster than I can type,  But 1 I need a shower badly and 2 I think I am so Happy the words would come out too fast and they wouldn’t be comprehensible anyway.  So instead, I would like to give a brief summary of the week and go into more detail in the future.

Monday

I had surgery for Botox injections in my bladder.  For the first time ever, the anesthesiologist let me stay awake while they finished setting up in the OR.  I have had this surgery at least 2 times a year for the last 10 years, and although I have asked repeatedly not to be put out, I’ve never made it awake longer than a few minutes in the Operating Room.  Spoiler Alert…this MAY be the last time I have to have this surgery!!!!! (More about this next week?)

Tuesday

I woke up on time for my scheduled hearing with the IL Dept of Public Aide!  (That in itself was impressive considering I didn’t get home from the hospital until 9:30 p.m. Monday night)  I have been FIGHTING with the state for many years and finally requested a hearing to resolve the issues.  Spoiler Alert… MAYBE it worked out in my favor?

Wednesday

This was Not my day.  I mean I was not the patient on this day.  I think I have said numerous times that I would rather “take the hit or the pain” than to have my loved ones have to feel it.  Today was my Dad’s day.  I’m still not sure what is appropriate to share about my father’s condition so I will be brief.  Over the last year and a half, my father has been having numerous issues with his vision.  Together we have seen more than 10 specialists looking for help and answers.  While the ‘mystery’ is not solved, Wednesday we received some hope.  I’m gonna leave it there and hold onto the hope awhile longer.

Thursday

I mentioned that above.  I can begin walking!  Since I began writing this post I have taken a few steps.  I’m weak and wobbly, but a step forward is good one so I will take it.  BABY STEPS!!!!

Completely random subject change here… My grandsons have begun taking their first steps while holding onto or pushing things!!!!!!!!!!!!!!!!!!!!  Super exciting!!!!!

Friday (Today)

2 MRI’s at 3 :15.  Although I’m not looking forward to the tube, Thing 2 will be taking me and it will give me more answers to what my next step (see the funny) with my MS will be.

So yay! Today is Friday and it’s a GREAT DAY TO BE ALIVE!!!!!!!!!!!!!!!!!!!

For the off chance that anyone is NOT having a Great day, give this song a listen to, and see if it perks you up a bit.  (It’s actually my Not having a great day song, but it does pump me up.) It’s a great day to whoop somebody’s ass!

Happy Friday Everyone!  See you next week!

 

 

 

 

 

 

 

Are you prepared to die?

Before I continue, let me assure you that this is NOT a suicide note, nor is it a notice of my impending death.  This is a question I’ve asked and answered myself many times in my life.

If you’re not dying, why do you bring this up now?

I just received some unsettling blood tests, and I have some choices that I have to make.  When I receive bad news, in order to not “freak out”, I look back at all the things I have survived in my life to remind myself that I can be pretty damn tough.

As many of you know, I was diagnosed with MS over 20 years ago.  What you may or may not know is that I have had 3 family members die from complications of MS.  This disease has been “in my face” for many years before it actually caught me.  When I was diagnosed, I asked myself if I was ready to die, not if I was prepared, but if I was ready.  The answer was, “HELL NO!”  For the first year though, I didn’t do much to FIGHT it.  Instead, I began drinking ALOT.  I also started behaving very manically, (well if I’m going to die anyway, I’m going out with a bang)

About a year after my “MSaversary”,  I finally stopping running and faced the diagnosis. I began taking the disease modifying drug Betaseron.  For 10 years, I gave myself an injection every other night, yet my MS symptoms continued to steadily progress to the point that I was in a wheelchair more often than not.  I was constantly depressed.  During this time, my kidneys began shutting down, AND I was diagnosed with cervical cancer.  Around the 10 year mark, I think I WAS ready to die.  Not prepared, but ready.

At then end of 2009, my girls and I made the very long hard decision that I was going to begin receiving monthly infusions of Tysabri even though it could kill me.  I decided that QUALITY of life meant so much more to me than QUANTITY!  I have previously written about how the decision was made in a Five part series if you would like to read.  The decision to start Tysabri Part 1The decision to start Tysabri part 2, The decision to start Tysabri part 3, The decision to start Tysabri part 4, and finally, The decision to start Tysabri part 5.

To date I have received 121 infusions of Tysabri.  I credit this drug for giving me my quality of life back.  I do not regret my decision in anyway, in fact I have even argued with my doctor about NOT switching medications when he suggested that I consider it. Last year, I wrote “Who’s the boss anyway”? explaining my reason for denying the change.

At the end of last year, I had to see my neurologist so he could perform my yearly neurological exam, refill my prescriptions, and send me for the required JC virus test to be allowed to remain on Tysabri.  My son in law was nice enough to drive me to Chicago for the visit.  Because of my newest list of injuries, the doctor was unable to provide a complete exam.  The parts of the exam he was able to perform showed that I had increased numbness (lack of feeling) on the left side of my body.  I have also been having some issues with my vision (though I have been attributing that to my age).  He wrote the refills for my prescriptions, and the order for the bloodwork, and we agreed I would come back for a full exam once my foot healed enough to be able to walk on it.  (hopefully March)

NOW let’s talk about these unsettling blood tests….

My bloodwork came back stating that I was now JC+, meaning I had the John Cunningham Virus (JCV).  Not only did I test positive for the virus, but my titer levels are considered very high. 4.8!

hmmmm now what?  I have a decision (well several to make)

Here are the drug facts

In addition to revealing that I have now become JC+, my bloodwork revealed that my Absolute Eosinophils are high.  What the hell does that mean?  A quick Dr. Google search said…

Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. You can have high levels of eosinophils in your blood (blood eosinophilia) or in tissues at the site of an infection or inflammation (tissue eosinophilia).

OF course the first thing I saw was CANCER……cmon!!!!!!!  Seriously?!?!?

After speaking with my Neurologist, WE have decided first to have the bloodwork performed again.  (there is always a chance for a false positive?)  Because of the decreased sensation on one side of my body, the increased balance issues, and vision changes, IF the test still comes back with a high Titer level, the first step will be to undergo further testing for PML.  I haven’t even thought about further testing for the High Eosinophils, I honestly believe that everything else going on in my body is causing that.

I have so many questions and decisions to make that I find myself asking again, “Am I prepared to die?”

 

 

 

 

Happy Birthday to ME

When you were younger, I am willing to bet that you eagerly awaited your birthday each year.  Hopefully, you had at least a few very memorable ones.  Maybe some cake and ice cream?  Friends and family over?

So why do we stop celebrating them as we get older?  So many people say, “It’s just another day.”  or “It’s no big deal.”

I call bullshit.  Birthdays are the anniversary of your birth.  A milestone that you have SURVIVED another year.  You’ve reached a new level in the ‘game’ called life.

Today I am LEVEL 46 and I am asking you all to celebrate with me.

I don’t have anything BIG planned for this year.  No major parties.  I’m not going on another adventure.  I am just going to be.  I am going to be grateful.

The only reason I can see to STOP celebrating your birthday is MAYBE when you are no longer alive.  Even then I don’t really see the reason.  I still celebrate my friends and family members that have passed birthdays.  For example, every Sept 21, my late Grandmother’s bday, I buy a hamburger and strawberry shake from McDonalds.  I then spend some time reliving some of my fondest memories of our times together.

Did I mention cake?  Who doesn’t like cake?!?!?

So today is my Birthday, at some point I will see my girls.  We are going out for dinner on the 10th to celebrate all the birthdays together. Thing one will be 28 on the 11th. Her and her hubby are going to a concert that evening, AFTER I bring her a cake.  I am staying the night with my grandson’s that evening. Thing two will be 22 on the 12th.  She has to work all day, but I will be waiting at her house when she gets home with Cake also.  Not quite the sugar coma we faced last year during The birthday week, but there has to be cake!

Thank you for joining me today!

 

 

 

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.