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?

Not your typical Blogger Award revisited

Revisited? re awarded? Whatever the case, last year I wrote a post, Not your typical blogger award, in which I decided to share some of my favorite blogs with you. I would like to do that again now.

The blogs that I have chosen to list are the ones that make me laugh, or even just really think the most.  I have purposefully NOT included the blogs I follow about MS, or other chronic illnesses, because AGAIN, today is just NOT an MS day for me.  If you are interested in hearing a list of chronic illness bloggers, let me know.  (I have some great motivating and inspirational recommendations.)

The first blogger I would like to recommend is, Tom from Tom Being Tom.  Of course I have to direct you to a fabulous post that Tom wrote about me, Graced (I can’t resist the free publicity.)  Seriously though, let me talk about Tom for a minute.  Tom is the 2nd blogger, I have read every post they have written.  (The first was superman, who I previously nominated for this award.)  There was no challenge to read Tom’s words, it was a pleasure.  Sometimes serious, sometimes light hearted.  Sometimes, (ok frequently) Tom writes about sports and politics, but imo he makes up for that when he shares his love of his wife and his fur babies, Ludo and Moxie.  If you have some time, do yourself a favor and give him a read.  (If you haven’t clicked on one of the links to his posts above, start here.)  This is my favorite.

Up next is Lisa, the writer behind All About Life.  Although Lisa is a relatively  “new kid on the block”,  you wouldn’t know it by the number of followers she has racked up in the few short months that she has been blogging.  There is not just one word to describe Lisa, but here  is one….  CANDID.  Refreshingly Candid.  I don’t remember how I first discovered her blog, but I am certainly glad I did.  In fact, I think she is the next blogger I will be going back to the beginning to read (once I finish rereading the posts I have made) If you are looking for a place to start (not the beginning but an insight into her personality, may I suggest. Refusing to Grow up.

My final recommendation is the blog Lockwood Echo.  While I don’t actually know her real name, Lockwood works for me.  I can’t think of a better way to recommend her than to share what she says about herself on her The Editor page….

The Lockwood Echo was born from a collection of random musings and a wish to collate what I thought may be of interest or side-splittingly funny.

Using humour to deflect rage or feelings of misjustice and trying to make people think I’m wickedly witty has been a game-plan of mine for many a year. It’s self-preservation when life hits melting point. It’s also not healthy to bottle up so much sarcasm. It’s best I let it out.

She does this quite well!  While reading her posts, I promise you will feel….”omg that has happened to me” or maybe be glad that it didn’t. (though you might not admit it as she does.)  If you need a place to start, check out,  then there was that time series.

I’m going to end this post now, as I have much more reading to do.  Please take a minute and look at the blogs that I have listed.  I promise you will not be disappointed!

 

I hit Einstein with the car

True story!

and not once but twice!!

I know it sounds terrible and it probably is, but now it is something we try to laugh about.  Maybe the story will make you fear me, but I truly hope you will chuckle instead, since no one was ever actually hurt.

Back in January, I talked about almost hitting Einstein with a car for the 3rd time.

Fortunately it never happened.  Well THAT time it didn’t happen, but on one occasion, almost 30 years ago, I intentionally hit him with a car.  That’s the only time I did it intentionally, but it was not my intention to kill him, or even hurt him seriously, it was to make him go away and to stop hurting me.  Other than to say there was alcohol, bad decisions, and police involved, I’m going to leave that story there.

Several years later, when I dropped our then teenage daughter off with him for visitation, she was wearing a bright red Tshirt, like the one pictured above.  I found it funny, he didn’t.

Several more years later, the three of us were looking through Thing One’s old photo albums and found a picture of her wearing said Tshirt.  Neither of us laughed at that point.  Actually we both got quiet, quiet enough that Thing One gave us a questioning look for an explanation.  We revisited that bad time with her briefly reminding her that good people make bad decisions, and that we had both changed and had many regrets from our past.  She shrugged it off, because she fortunately had never been witness to that part of our lives.

Maybe seven? years ago, Einstein had to take his car into Discount Tire, and asked me to meet him there to pick him up.  This was the “alleged” or 2nd time I “hit him” w/the car.

sherwin drawing

When I pulled into the cul-de-sac ( my path in blue) Einstein walked from the store to stand approximately where the red X is.  As he was walking out, I continued past him and did a U-turn in the culdesac.  Before I stopped completely, HE WALKED into the front of my car.  He says I ran into him, I say he walked into the car.  (Contact was at Two miles an hour and bumper to pant leg…not even touching skin).  We both stopped dead in our tracks and stared at each other.  What the hell just happened?!??! 

“Why did you keep walking?”, I shouted.

“Why didn’t you stop sooner?”, he retorted.

I don’t think either one of us said anything for many minutes.

My phone started ringing and I answered over the Bluetooth in my car.  It was our daughter, Thing One.  Before she could say anything, I said, ” OMG, Thing ONE, I just hit your dad with the car”.  Her response was………wait for it…… “again?!?!?”  Einstein exclaimed, “Seriously kiddo, that’s all I get?  Not a is Dad ok? Why did you do it?!?!?, really just AGAIN?!?!?”  She laughed and said, “Well you know how mom drives, and if she did actually hit you, you probably deserved it”.

Please be chuckling at this part!!!!

I know that it’s not a FUNNY story, but it is true.

At the beginning of this post, I said that I ALMOST hit him for a third time.  Here is another picture.

parking drawing

So back in January, Einstein needed to do some work on his car, that he kept putting off, because he had my car to use as a back up, or me to drive him to and from work.

Usually, I got there 15 minutes before he got off work and sat in the parking lot waiting, but as I explained in my earlier post, MScog fog,slump week, and grieving, I had overslept.

When I arrived in the parking lot, (again me in blue and Einstein in Red) we both just stopped.  Neither one of us moved for a few moments, until I moved the car along the green path and parked.

This time when he got in the car, we both said, “It really shouldn’t be this hard.”

The following month I moved out.

At the time I moved out, I foolishly thought that would be the end of US…whatever US was.  At the end of the post I wrote in February, The Elephant in the room, I stated, “Can I please get off this roller coaster now?”

Moving out was the best thing I could have done.  It did allow me to get off that particular roller coaster of emotions and start focusing on myself.  But I didn’t leave the “theme park” entirely.  Our daughter’s wedding, the upcoming birth of our grandchildren, the death of Einstein’s best friend, and many other things have brought us together again repeatedly, with the most recent being my needing help after my surgery.

Why am I writing about this?    For many reasons.

A couple weeks ago, I wrote that it had been almost a year since I started blogging.  I decided to take this time to reflect on how I survived last year, which areas I needed to improve on, and what goals I wanted to accomplish in the upcoming year.  Einstein has been a big factor of my life for many years.

Living apart has been beneficial to us both.  We no longer rely on or depend on each other.  When we choose to spend time together, it is because we choose to, not because we have to.  I am comfortable with that.

I really feels good to say I am comfortable.  I am not looking at the future with or without him, I am just letting things be and for us, for me… THAT is progress.  I am focusing on me.  Focusing on improving my health both mentally and physically, FOR ME!

As I have spent the last couple of week rereading posts, one thing that continually proves itself is that I have found a wonderfully supportive group of friends in the blogging world and words alone can not convey my gratitude.  In fact, if you have another minute I want those of you that have stuck around and keep coming back to know… You are one of the “resources” that keeps me going.   THANK YOU!!!!

( Remember this part in the upcoming weeks)

Better days ahead… week 3 post op

Last week, I briefly wrote about having the dizzies” The fact that I was experiencing this new symptom in addition to it being “slump week” for me, made it very difficult to stay focused and on task.  Thankfully, I was able to “just be” over the weekend.  I had my infusion on Monday, and life has returned to normal (whatever that is)….

Last week, I also posted, So…not what I was expecting….  Originally the post was going to be about the post op visit, but I got distracted.  So let me tell you now what I was not expecting.stair xray

I knew that they would be xraying my foot, but I did not expect to be climbing stairs for them to do so.  How the hell is that safe in anyway?!?!?  The doctor had ordered me NOT to put any weight on my foot without the CAM boot on, how did he expect me to do this?!?!?

I climbed the stairs with the boot on, tried to balance while taking it off, and hovered my foot over the xray table.  I held on very tightly (while standing on one leg) while the technician re-positioned the table numerous times.  When the xrays were done, I put the boot back on, and climbed off the table…..  Again, what the hell were they thinking?  How can this be a good thing?

After reviewing my xrays…..

The doc says, “Everything looks like it is healing beautifully.  I want you to continue doing exactly what you have or haven’t been doing  (no driving, no weight bearing without the boot on, and then still limited walking) for another 3 weeks and then we are going to try to get you back into hard soled shoes.”  I also got the approval to sleep in a surgical shoe instead of the boot.  My hips and I are very thankful.

I am somewhat skeptical about being able to go back to normal shoes in this amount of time, but since I am no longer feeling any pain, I am trying to be hopeful.

Another thing that I DID NOT expect to hear was that I did indeed also have gout.  Although my blood tests showed almost no uric acid, when they performed surgery, there was an abundance of uric acid crystals surrounding the joint and the break.  Part of me wonders if this is one doctor trying to cover for the other.  I guess time will tell huh?

I will still be reviewing and in some cases re-sharing some old blog posts over the next couple weeks.  It’s kind of funny that I am the MS blogger, who rarely talks about MS though isn’t it?

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.