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.

NOT THE TUBE!!!!

By the time this post appears, I am probably already stuffed in the tube for my annual MRI.  Nothing new really, I’ve only had 40 or more, I should be a professional by now.  But Today is a First for me.  I am going to attempt to go in without being drugged.  Lately, I have been pushing myself to do things outside my comfort zone, you know like dealing with FEELINGS and shit….. :(,  So I figured why the hell not….?

Tonight (well now last night) Thing two looked at the dry erase board with all of our schedules on it.  She saw that I was scheduled for an MRI at 10 AM Friday, and asked who was taking me.  Like a proud 4 year old that learned to tie their shoes, I replied, “I’m going by myself.”….. The NEIGHBORS could hear her laughing……smh heh Thanks for the support kid!

I guess I should start at the beginning and maybe share some of my MRI tragedies with you.  The very first time I went in for an MRI was 20 years ago, when I was diagnosed with Multiple Sclerosis.  I had never even heard of such a thing.  The doctor explained,  “it’s just a glorified xray machine, but it will take much better pictures”.  If she was still in practice I would find her and let her know exactly how I feel about her bullshit explanation by placing my foot in her ass.   SMH….

So about 20 years ago, My sister in law and I show up at the hospital for my first MRI of my brain. I thought they were looking for a pinched nerve or something simple to explain the numbness in the left side of my body.

c spine coilI was 25 and had no idea that I was claustrophobic.  I laid down on the table and they put something that is called a coil around my head.

Coil my ass!  This thing felt like a vice and I couldn’t breathe!

While they were trying to calm me down, the doctor called down to say that she wanted a cervical spine and thoracic MRI as well with GAD otherwise known as Gadolinium for contrast.  This meant another coil and two more hours to the one I was already committed for.  The second coil looks like this.

head neck

Oh fuck no!  Although the coil is very lightweight, it felt like 100 lbs on my chest.  I started panicking  and hyperventilating before they even put me in the tube!!!!

Hey guess what…. I’m claustrophobic as fuck!!!!!!

They called the doctor back and told her I was being ‘uncooperative’, could they give me something to relax me?  After all these years, I still can’t believe I was the first person to ever freak out about being put in a tube, in fact I am positive that I wasn’t.  Seriously though, no warning!!!!

I don’t know what they gave me to sedate me, but I kind of remember climbing back onto the table, being “strapped down”, given a little “panic bulb” and being  pushed inside the machine.  I must have fallen asleep.  When I woke up, still inside the machine, I tried to squeeze the little panic bulb, but I had dropped in in my sleep.

I started yelling, and kicking the machine from the inside.  No one was coming!!!!!  My sister in law could here me yelling in the waiting room and came busting through the door yelling, “can’t you hear her in there, get her out!!!!”…. That is the LAST time I ever let anyone put me in an MRI machine without being drugged to some degree.

In fact this is the perfect time to share another MRI mishap.  It was 5 years and several MRI’s after that first bad experience.  This time I was going to be smart though…or so I thought…. I had scheduled the MRI for 6 am on Black Friday.  My thoughts were, that I would stay up the entire night before shopping and I would be so exhausted that I wouldn’t need as many drugs to go in the tube.  Sounds like a good plan right?

We went to Thanksgiving at my parents, did black Friday shopping, but I couldn’t stay awake.  The last time I looked at the clock it was 2 am Friday morning.  The next time I looked at the clock it was 11:30 am.  I started yelling at my husband, why didn’t you wake me?  I had to be at the hospital by 6 am!!!!  When I stopped yelling, he said, “Grace, you were at the hospital and you had your MRI, Honey it’s 11:30 on Saturday!”

NO fricking way!!!!!

My stomach was growling so loudly, so I went in the fridge to find something to eat.

veggie tray I found something like this with a section filled with turkey, another with sweet potatoes, and so on and so on.

When I finished stuffing my face, I told Ken that he his idea of filling the veggie tray with leftovers was brilliant.

He responded, “I didn’t do it, you did.”  “after we went for your mri, we stopped by your parents, you ate almost a full plate of deviled eggs, and filled this up with leftovers”

I have absolutely no recollection of anything after 2 am Friday morning.  Apparently, everything he said was true though.  Looking back, I Think I self medicated TOO much.  That’s the only explanation for it.

I really scared the shit out of myself with that one!

Since that time, I have learned better and SAFER coping mechanisms for being placed in the tube, but it has taken me years to work up to this.

  1.  I know how to disconnect the coil myself.
  2.  I only schedule one mri at a time.
  3. I do keep my eyes closed the entire time.
  4. I keep the music on very loudly in the headphones
  5. I “tie” the panic bulb around my hand
  6. I make the technician talk to me between each picture and tell me how long the next image will take.  (so I can break it down into 5 minute segments)
  7. and perhaps most importantly, I go to the same place with the same technicians each time, so I have developed a bit of trust for them.
  8. I know that if I can’t make it, I always have the option of LIMITED drugs

I hope to write tomorrow (later today) that it was a piece of cake.  I have to try!  MS is not going away, nor are the yearly MRI requirements to stay on Tysabri, so I might as well give it a shot.  If you are interested in learning more about my experiences, with Tysabri, please type tysabri in the search box, I think I have made several posts.

How do you deal with repeated MRI’s?  Any tips?

 

You’re doing what? With who? Where?

Phone conversation with Thing One:

Grace :  “While I am in Boston I am going to meet a couple of friends that live in the vicinity whom I met in the blogging world.”

Thing One:  “OK, mom, don’t forget the “proof of life” pictures.”

Grace: “you got it kiddo”

Friday, April 6, 2018

proof of life
Grace Fullnot….last seen wearing pic

Grace:  Good Morning kiddo

Thing One:  What’s wrong?

Grace:  Nothing, just sending you proof of life, Bill will be here in a few minutes to pick me up.

Thing One:  Why aren’t you smiling?

Grace:  Seriously?… Because I am freezing my ass off, and besides I wouldn’t be smiling if I was kidnapped 😛

Thing One:  I’m gonna need another picture

smile
The things you do for your kids….

Grace:  Better?

Thing One: 😀

SMH….for those of you who don’t know…SMH is Shaking my head.  (I really do that A lot!)

narrow streets

 

 

 

 

Superman was supposed to pick me up by 10.  I’m expecting a little Honda Civic to pull up…. he tells me when he’s on his way that he will be driving a truck instead…..ummmm……. itty bitty roads….

“Let me know when you’re close, I might have to meet you on the corner?”

Before I knew it, ( early even ) there he was loading mine and my companions suitcases in the truck.   Bill and I were heading to Salem for the day, where we would be meeting Karyn and Steve after exploring Salem for a bit.  My traveling companions were going to Pax East at the Boston Convention Center, and we would meet up again at a new airbnb apartment near Salem for the night.

Superman Really Does Exist

superman
To keep his identity a secret…this is the only picture of him I will post

Before we ever decided to meet in real life, Bill and I spent hours on the phone.  (not all at one time, though he did provide a big shoulder when I was struggling with Sara’s death) but we’ve talked about our illnesses, our common expression of saying, “are you really sure you want me to answer that?” when people ask for our opinions, and so on and so on.  Not only is he a great writer, but a great friend.

The real reason I am not posting his picture, is because he wasn’t feeling well and hasn’t been for awhile.  That’s HIS story to tell though, if you want to check it out.    As I said, he is a great writer, and just an all around great guy.

After eating breakfast at a little restaurant in Salem, we wondered around to find the Salem Witch Museum (my choice, not his)

I’m not going to say much about the experience, because hearing about the amount of hatred that people endured during the witchcraft trails still gives me the chills, but I did want to share this postcard.  The last room of the museum  is painted with the words on the postcard….. Very thought provoking!

Of course it was snowing in New England…AGAIN

snow in new england
Just flurries though for the time being

Let me tell you a little bit about the other two bloggers that I got to meet.

First of all there is Steve Markesich

grace and steveOf course you can read his About ME page, but I want to tell you about the man I met.  I’m not sure exactly how our path’s crossed.  ( I think he was doing the “my publisher said, I need to add as many people on social media as I can for the book I am writing thing”)  Either way, Steve’s is the first blog I ever started following.

I love the honesty, openness, and determination he displays when he writes about living with Primary Progressive MS.  MS is a nasty monster, and while I would not wish the disease on anyone, it is good to know you have people like this with you on this scary ride.  Poor Steve has also become a dear friend (didn’t know what you signed up for did you?”)  Please take a moment to check out his blog MSich Chronicles.  He does a great job of sharing how he overcomes the challenges that MS has laid at his door.

I had the privilege of meeting Karyn who writes Karyn’s Domain.

grace and karynKaryn and my paths first crossed around the time she wrote this The best blog I ever read.   She sent me a message saying that she had found my blog after reading Superman’s posts in their entirety, and looked forward to getting to know like minded people….

As many of you know lately my life has been filled with Drama, drama, drama, and I haven’t had much time for keeping up with ANY blogs, but the day after we met, I went to her website and saw this post.  (Honestly at first thought from the meme, I thought she was talking about me….lol).  This woman quit her job, and hiked the Appalachian trail!!!  How can you NOT want to know more?!?!?!  Actually , there is much more to Karyn, I encourage you to follow her on her journey as she discovers where she is headed next.  I know that I will be.

I would like to tell you that our “little get together” lasted until dawn and that we all just barely escaped being arrested for a noise disturbance.  But to tell you the truth…. we got together and just talked…..and it was perfect!  (in hindsight, they might have brought duct tape for MY Mouth)

Thank you all for making the trip and spending your time with me.  I look forward to our ongoing friendships!!!!