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?”

 

 

 

 

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

 

 

 

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?

FREE SOS feature on your phone

Recently, I had to start doing research on devices that would allow the user to activate a panic or sos button that would notify friends or family that they needed assistance.  While I still have not found the exact device to suit my needs, I did stumble across some very useful information about a FREE feature included on ALL cell phones  regardless of model or provider, without having to download an app or pay for a service.

If you are interested in hearing more, please keep reading!!!

Let me start by telling you what this feature does, or how it works after you do an initial setup and then I will post screenshots on how I set it up on my phone.

Once you have completed the initial setup, if you need to send an SOS message, you simply click your power button 3 times quickly.  Doing so,  enables the front and back cameras on your phone to take a picture.  It also makes a 5 second audio recording, and sends all of this information including your GPS coordinates to a pre-selected contact.

Too good to be true?  I thought so too.  So of course I had to test it out numerous times to try to find a flaw.  I’m happy to say that I couldn’t find any.

Each time I tested this, either myself or my contact received the message within 30 seconds.  The camera does not use the flash, so their is no indication to an outside party that you have clicked an alert.  The GPS coordinates were accurate to within 200 feet.

The steps I used to set this up on my phone are as follows:

  1. Go under your settings tab
  2. scroll down to privacy and emergency
  3. turn on send sos messages
  4. select a contact
  5. on the final screen you have the option to attach pictures and/or audio

From what I can tell, this feature is available on all makes of phones regardless of your service provider.  While each person I have talked to about this, has been able to set this up on their phone, FOR FREE, the steps were slightly different than the ones I used.  If you are interested, Google… ” how to set up sos messaging on your phone”.

Let me know if you tried this, and any opinions or concerns you might have that I might not have thought of.  I am very curious to know if it also works in other countries besides the US.

Great reminder from Walk a Myelin* My Shoes

Earlier today I read a post that reminded me of a topic I had wanted to discuss many times, but had never gotten around to.  Amanda, at Walk a Myelin* My Shoes wrote this post today, that I think everyone who has to ask someone for help, myself included, should remember.   BE Kind and Thankful for the people that are there for you.  But not only that…. REMEMBER to THANK them.

I reblogged this on my page a few minutes ago, in an effort to share her post, but I don’t know if I did it correctly.  If you have a minute, please take a minute to visit her post on her page at the link above.

We’ve all held the door for someone without receiving thanks.  Maybe you have let someone with a smaller cart checkout in front of you?  Doing those things and helping people for the most part makes us feel good about ourselves, when it is our choice to do them, and it’s an added bonus when the person you help Thanks you.

I’d like to share a story that while I am not ashamed of, I am not particularly proud of.  I’m not going to go back and “fix, or undo” it, but I do try to be better than that now, and I really try to remember to thank the people I have to ask for help.

Ok so here’s the story….

When Thing One and her husband started dating, he lived in Michigan and she lived in Il.  I am so thankful that the kids have decided to make Illinois their home.  I felt bad for Z’s mother, who has several physical limitations, that she would not be able to see the kids as easily.  Once the kids decided to get married, Z’s mom, (we’ll call her T) decided that she wanted to move to Illinois to be closer to our kids and potential grandchildren.  She asked for my help.

I have learned the hard way in the past, (and I am still learning) that it’s important to set boundaries when you help someone.  One boundary I try to place is that I will happily TEACH you how to do anything I can, but I won’t do things FOR you, if you are capable of doing them yourself and chose not to.

I helped T find maps, handicap accessible apartment websites and phone numbers, and offered to take her to the buildings if she did all the other prep work of reviewing the websites, and scheduling appointments.  That process wasn’t without it’s issues, but we did it.  She came to Illinois to stay with the kids for 4 days, and Friday was the day I would show her around and take her to her appointments.

When I arrived at Thing One’s to pick T up, they (Thing one and T) weren’t quite ready and neither had eaten breakfast, so I offered to make eggs for them both.  I asked, T how she wanted her eggs,  ( which is more than I did for Thing One) and she replied “Over medium”.  Ok, I will give it my best shot.  I made her eggs first, and when I placed them in front of her she made a face and said, “I guess I can work with that”.

Deep breath Grace!…Deep Breath! ( no I did not throw the plate in her lap)…..  I did look at Thing One though, who instantly gave me an apologetic look.  ( l love that my kiddo and I can communicate through facial expressions and body language so well)  Next I made Thing One’s eggs and placed them in front of her.  She replied, “Thank you.”  (Yes I had to point out that my daughter has simple manners).  Finally, I finished my own eggs.  (the same way I made T’s) eggs.  I sat down to eat and T immediately said, ” well that’s how I wanted my eggs, that looks good.”

WOULD YOU LIKE MY FUCKING EGGS?!?!?!?

What I actually said was,  “If you would like my plate, I will happily trade you.”  She dismissed me and began to eat from her own plate.

Several times throughout the day she barked at me that I was doing something wrong, or this wasn’t what she wanted.  I really really tried to be patient, but after seeing 4 different apartment buildings, and constantly being told I was incorrect, I made up an excuse that I needed to be home for Einstein for something, and took them back to Thing One’s.  (sorry kiddo, I did what I could….but she’s all yours)  and yes I did say that in her ear as I hugged her goodbye.

For the remainder of the evening I tried to offer Thing One appropriate responses to her future mother in law  (via text ) as she got on Thing One’s nerves more and more.  I was also supposed to hang out with the kids and T on Saturday for a couple hours.

When I got there on Saturday, I told both of the kids I was only staying for one cup of coffee, and asked which excuse they would like me to give about why I wasn’t staying longer.  Since the kids were “entertaining”, I offered to make everyone coffee.  Thing One wanted hers with creamer, no problem.  Z wanted his with a scoop of sugar, also no problem. I don’t even remember what T wanted in her’s because I honestly I had had ENOUGH of being told how many things I did wrong…

Here comes the not proud part

I placed T’s cup in front of Z and told him, “Here, YOU fix her coffee for her, because if  she tells me I did ONE MORE thing wrong, she will wear it”.  T gasped and looked up at me saying, ” Oh do you mean about yesterday?…. I was only joking!!!!”

Uh huh.  I quickly drank my coffee, made my excuse to leave, and wished T an enjoyable rest of her trip.

Yes I know that was wrong and very passive aggressive of me.  As I said I’m not proud.  But I think it illustrates my point.

A year has passed since that day, and while I have not been MEAN to Z’s Mom, I have not been helpful in ANY WAY.  Normally I would have spent some time at the kids wedding in March with her, making sure she was settled in ok etc.  I didn’t, other than to make sure the obligatory newlywed’s with their mom’s picture was taken.  I have not shared any of the kid’s ultrasound pictures with her (as I would have in the past).  I know that it’s not my job to do those things, but that is who I normally am.  The one who tries to treat everyone like they would like to be treated.

I’m sure I will have more dealings with T in the future, and any help I give will be because I chose to help not expecting anything (even a thank you in return) I know that this is the way it is supposed to be, but I am human, and would at least like a Thank you.

Thank you for reading along today.  Do you get bent out of shape too, when a Thank you is not spoken? I think we all do a bit.  PLEASE remember to thank people who are kind to you, or that you rely on for help, it can really make a huge difference.

**** I didn’t realize until reading some of your comments, that I neglected to add that at this time, T still resides in Michigan.