Diplopia - A Funny Word for Pirate Life

I dont even know how to tell the story of my life the past week because it seriously seems made up, it's that crazy.

Crazy, dramatic, unnecessary, and all other words that would fit in those catagories.  

The hospitals, clinics, drs, research facilities, MS society...they all express the necessary life function of keeping your stress levels at an all time low.

At first, this was one of the hardest things to achieve as I had a stressful life.

But now I can say with no hesitation that my life, even with this crazy disease, is (mostly) stress-free.

The stress that I do find comes from: hospitals, clinics, drs. research facilities.  Do we see the irony there?

I'll summarize:

After numerous attempts to contact my MS specialists office (a MS nurse, a PA, someone!!), I received a phone call from the answering service saying that the office would like me to go the ER. 

I had been told the evening prior that I should go to the ER from a resident.  But was hoping my speicalist would provide better news because I am not a lover of hospitals. 

But now it looked like that was the option.  So we went. 

The morning of as I was getting ready I was mentally preparing myself for the ER craze.  ER's have been a chapter of the most awfulness in my past and I was concerned about that day's adventure.  I was hoping for a quick, concise, ER trip. 

And then I stop, saying to myself "hell, Eliz, the chances of that happening are slim to none.  Let's be real."

Then I "hear" the voice of God say "if you dont believe in miracles, they arent going to happen."  To which I replied "JK totally believe!! Please let it come true!!"

And you know?  It did!  The had me in a room and hooked up even before my mom parked the car.  They were nice and compassionate and even entertaining (who knew!).  They even got a vein in one stick (this NEVER happens). 

I went for a brain and optic nerve MRI (if you've never had a ON MRI, it's pretty intense.  The pounding of the MRI is right there on top of your eyes and you have to keep them shut the whole time). 

Results came back and the ER dr and the radiologist confirmed some bad news: three new lesions, one of each optic nerve (left and right) and one in the cerebellum.  They were sending down neurology and I should prepare myself for being admitted for a few days.

Neurology came down, confirmed the MRI, did the exam.  We talked about options, how steroids were out since I dont respond (this is now very purposely written on my file at UPMC.  Thank goodness.  Dr's have an easier time reading files than believing patients.  Go figure).  We discussed potentially doing plasmapheresis again even though I just went through 5 rounds a few weeks prior.  It was very calming and we even discussed some of my other questions that I have (like the whole parkinsons disease issue) and how this could be addressed during my time. 

Neurology left and though I was disappointed about staying in the hospital, I felt like I was being listened to, that I was being heard, that I was being a part of the deciding situation. 

(Of course I stuck to my hospital uniform: t-shirt, leggins and toms.  Hospital gowns are not for the experienced).

And then it all changed. 

ER resident came in and said my Specialist wanted me sent home, with no treatment, and he would see me tomorrow morning.  

Im sorry?  We were all on the same page that this was serious, that action needed to occur.  But now the great MS Specialist (who doesnt even practice in the hospital) says to order me home and no one has authority to tell him no?  

"Uh yeah."

Can I get a second opinion?  blah blah blah

"Um no.  Not in this hospital."

#awesome

I'll spare my thoughts on the negligence of this situation. 

I went home and while I was happy to be in my own bed and not the hospitals, I was also concerned.  This was serious.  And I felt like I was being pushed into a closet.

The next morning I met with my MS specialist.  I left the office with no answers, no apologies (lots of excuses/explanations), and no plan of immediate action.  

My best option is to retrain my brain / eyes how to see.  I've retaught my legs, arms, speech, etc.  I can do this.  It just means the pirate patch might be around for a bit.  

And there is still the overall concern with how/why this is happening and so quickly.  But I cant think about it because there are no actions to take at this time.

However, if I may hint, I do have a big appointment in August with a dr who looks promising.  I have my doubts only because of the past two years history.  

But like what happened explained above, if you dont believe in those miracles, they wont happen.  

So I'm believing.  Im hoping.  Im praying. 

Oh and Im also relearning how to see.  Have I mentioned my body is kind of bad ass?

Keep up the love and sparklers!

Love, Eliz

 

A Pirate's Life (is not) For Me

So I'm sitting there at a baby shower, watching my lovely friend open her presents.  And then all of a sudden, there are two Megans. 

/What?!

I got the optic neuritis.

Optic Neuritis is a (according to wikipedia) a ulti-etiological condition consiting of the inflammation of the optic nerve.  In MS terms, it means you have a lesion on the nerves that connect your eyes with your brain.

Technically I had my first touch of optic neuritis weeks ago when my vision went blurry.  It got better with time and a round of plasmapheresis.

What I am experience now is different.  It is more commonly known as Diplopia, aka double vision.  It makes life look like this:

Optic neuritis is extremely common in Multiple Sclerosis.  It is often the main leading factor in many people's diagnosis. 

For me, it was the last piece to complete the long list of all the MS symptoms (I have experienced them all now; yay!).

Every doctor, every visit, every hospital would ask "how are your eyes" and Id be thankful, no problems.  Yet.

That's why when this hit, it really wasnt a panic button situation.  Instead I just called my parents and they came and picked me up.  We knew this day would eventually come and had thus prepared for it.

What I didnt prepare for was the dressing up as a pirate part.  In order for the double vision to be limited, one wears an eye patch. 

First, the eye patch itself is super uncomfortable.  Second, it doesnt fit underneath glasses; not being a huge contact wearing person, this is extremely difficult.  

You would think it more common for someone to want to wear glasses with an eye patch and thus have an eye patch that fits underneath glasses but this is not the case.  Believe me, I have looked.

It was never a life dream of mine to be a pirate.  I never played dress up pirate.  Even with the Pirate of Carribean phase, I only enjoyed it for Orlando Bloom and that was before he became a pirate.  

The patch just isnt doing it for me. 

The hardest part is that I cant DO anything about it; or rather, anything productive that would work.  I know what it is.  I dont need a MRI to tell me.  I dont want to be admitted to a hospital to be injected with meds we already know wont work.  There is no therapy that can be done.  

I feel helpless.  I cant see and there is nothing I can do about it. 

The patch frustration doesnt help.  When I say I've looked everywhere for a patch that will work for me, I mean everywhere.  There has not been a stone unturned.  I even contacted the nursing homes (that poor woman on the phone). 

And yet when I call my specialists office for help (which is their purpose right?  To help their patients when they have a flare?!), the response was "look online".  Really?  I am not here to waste anyone's time.  My past career was built around providing the most efficient procedures and answers.  You think I didnt look online prior to contacting you?  You are so kind to help me and really, your resources are top notch.  (Sorry, #dramaqueen moment).

Yes, it's just a patch.  Yes, it's just a symptom.  But just like that, everyone is looking at me again.  Everyone stares.  My doctor office is treating me like I'm some stupid silly girl who doesnt get "the program".  

Sometimes I wonder if people think that myself or others with disabilities do it for attention.  That we wear these enhancement devices for that second glance or hell, even a glance.  Do you really think that it's all in our heads?  That I'm making up this story for fun? 

Im frustrated and possibly it is because for the past three months I've had the opportunity to look normal again.  And I forgot how it felt.

And now I dont look normal.  I look like a pirate. 

A bloody pirate.

We hope that it will pass.  We hope that it will get better.  Yes, there are chances it could be permanent but we hope that it is not.  

But, as I've shared before, hope is one of the most difficult things.  Because it can disappoint.  There is no guarantee of a positive outcome if you hope.  

Yet, what other choice do I have?  I will hope till I either hear those words "You're cured!" or I take my last breath.  Life is too beautiful not to.  

Even if I now see two of everything in life.  The more the merrier.

The good news about all this is that my wonderful mom (Im assuming it was her) got another puppy for me!  It looks just like Sputnik and always stays right next to him.  They even move in unison.  It's really cute.  I've always wanted another puppy!  

Oh wait....

(:

Love, Eliz

Plasmaexchange 3.0

Plasma-exchange. 

Aka as that time you lose all your blood.

Or rather, all your plasma in your blood.

Back in December 2013 I started to experience severe pain and lack of use in my arm.  I went to my neurologist thinking it was MS.  It wasnt...it was a slipped disc.

After a cervical spine surgery in January and a few weeks of healing, I was doing pretty well.

Until one day the pain and lack of use came back.  I went to my orthopedic surgeon thinking it was another slipped disc.  It wasnt...it was MS.

This back and forth way of living makes me feel like a tennis ball.

On top of all this fun Im experiencing vision issues (blurred vision), which is very common with multiple sclerosis yet something I had not experienced as of yet.  Optic Neuritis is the name.  It was only a matter of time before this symptom jumped up.  

(PS: looking at a computer screen is extremely difficult so please excuse any misspellings and such.  Im writing blind ladies and gents.)

After a meeting with my MS specialist on Monday, we decided to take the route of Plasma-exchange, or in fancy words, plasmapheresis. 

What is common with multiple sclerosis is that when a patient is struggling with a relapse, they will do a round of high dose steroids.  

But we all know I'm not common. (:

Steroids have never helped (or very little) with my MS.  They do a great job at making me irritated and gain weight and have insomnia though.

Because of this, we have sought out Plasma-exchange in the past to help me when my symptoms are high.  This session is 3.0 because I've had it twice before, June 2012, May 2013, and now.  

(We might as well schedule it for next year this time too.  PS researchers...I think this is a sign that the cyclical year has something to do with MS).

What is plasma-exchange?

Well, in my uneducated, non-medical words, you have a needle in both arms, with your arms laid out at your sides.  One of the arm needles pulls out blood (in this arm you wear a pressure cup as well as squeeze a ball for the full time to get your blood pumping), puts it in this big, sometime noisy machine, cleans out your blood's plasma, puts in a mix of synthetic and donor's plasma, passes through a warmer, goes in all this tubing across your body, and in through your other arm.

(the Team Edward shirt was a must...we have to add the humor to life)

It lasts anywhere from an hour and 45 minutes to two hours and 45 minutes.  I do 5 sessions, every other day.

The most difficult part of the process is finding strong enough veins for the needles.  Yesterday's procedure was very successful, with both veins remaining tight the whole session.  Often times my veins collapse but we're remaining positive this round.

So what are the benefits?

According to wikipedia, plasmapheresis is an important use in the therapy of autoimmune disorders, due to the rapid removal of disease-causing autoantibodies from the body's circulation.

In my again, non-medical terms, it gives your body a fresh detox in order for it to heal.  With MS (and lots of other autoimmune disorders), our bodies find themselves under so much stress during a relapse, not providing it an opportunity to heal.  Plasma-exchange gets rid of any bad things in your blood so that your body can focus on what is important at that time: healing.

 It is not a very common procedure in the US (very common in Europe and Japan).  I'm fortunate because UPMC (my hospital network) has a plasma-exchange unit. And even more fortunate, I adore the ladies and the dr that work in this unit.  They are so nice and calming.  I'd do plasma-exchange just to come visit them! (ok maybe I'd rather just bring in coffee...but that shows my appreciation).

Really the hardest thing about this whole story is that the plasma-exchange unit is in the hospital where I've spent the past two Junes in rehab.  I get sick to my stomach just thinking about it.  Granted, my weeks in rehab were very productive and I am entirely grateful for the experience and the hard work accomplished.  And yes, as I walked (WALKED) into the hospital I felt a sense of "hell yeah" as I realized how far I have come.

But what is truly terrible about MS is no matter how far you come, something else will happen.  Yes, I'm walking but I cant see.  Yes, I'm talking but I cant use my right arm.  It makes me want to cry because I just want a period of time where everything is just flat, normal.  

So I find myself with two options: sitting around waiting for MS to give me a break, or work like hell to live life fully, with MS in tow.  

I think I'm choosing the second one.

Love,

Ps: have you tried plasma-exchange?  Send me an email or leave a comment with your story!

 This wikipedia page does a great job at providing more information on the process and the  benefits: http://en.wikipedia.org/wiki/Plasmapheresis. 

If you have a difficult time with-standing steroids or have not been able to find any relief, I highly suggest asking your doctor about plasma-exchange.