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

 

My MS Drug Story

Disclaimer: I have come to the following conclusions on my own / with the consult of a specialist and do not suggest pursuing anything without consulting a doctor or qualified professional.  (:

I came to my diagnosis with multiple sclerosis literally overnight.  Well, not even overnight.  Within a few hours of my first of 20-something MRI's I was given my diagnosis of MS.  Of course we then spent months and many doctors deciding if that was the right diagnosis and all of them have concluded the same: aggressive, severe MS.

One day I will write about my diagnosis story.  But today, we get to talk about drugs.  Fun.

As we all know, there is no cure for MS.  However there are a few medical drug options to help with "managing" ms, meaning they help slow down the progression of the disease, in a hope to help eliminate further lesions on the central nervous system. 

The first neurologist I met with after my hospital diagnosis was the first doctor I spoke to about MS management drugs. He explained very high level the different types and suggested a drug in the interferon family.  Since the drug sales rep guy for Rebif had just been in his office, he suggested this one, with the line "it would be easiest to pursue since he was just here and we have a good relationship".  Looking back now I do wonder / can probably guess he got a kick-back from the drug company for that prescription write-out. 

So I signed up with Rebif.  A nurse came to our house and taught me how to use my auto-injector.  Eventually after a few weeks I got the courage to inject myself.  3 evenings, Tuesday, Thursday and Saturday, were reserved for rebif.  The side effects were wonderful and by wonderful I mean awful.  I would get huge welts where I injected the medicine on my thighs, butt and arms (I came to appreciate my thick thighs really quickly with this drug though).  Nausausness and just overall feeling yucky followed for about 12-24 hours after taking the drug.  It was worth it, because it was suppose to help me.

(If you are on rebif, I highly suggest putting an ice pack over the injection area before and after injection.  It helps with swelling as well as the hurt from the drug.  Just a tip :D)

9 months went by, injection after injection, paying bill after bill, when we finally came to the conclusion it was not working.  MRI's showed lesions and activities.  "It" was progressing.  

So we decided to purse our next option: the lovely and by lovely I mean really awful drug of Tysabri.  Dont google the side effects of Tysabri unless you want to scare yourself; it's not pretty.  And by not pretty I mean it can cause a brain disorder than can kill you.  NBD.  

But I didnt really have any other option at this point.  So we took the risk and I started Tysabri in January 2013.  Tysabri is a once a month infusion.  The hospital has an infusion suite with these really comfortable chairs and you get juice and snacks at the end of your session.  I did this for three months.  April came through and I was so sick that when I came to the infusion room in my wheelie, the nurses wouldnt even administer the drug until my specialist saw me.  This led to a lot of testing and MRIs.

 (If you are going through Tysabri infusions, I highly suggest bringing good reading materials and wearing bright clothing, aka what I so clearly did as seen in this picture).

A day or two went by and the specialist said all looked good so far and to go ahead and come in for my April infusion.  Following doctor's orders (because why should you second guess your doctor?) I came in and got infused with a month's fill of Tysabri. 

Three hours later Im in bed, resting, when I get a call.  It was my specialist's nurse, calling to say the last blood results came in.  And guess what?  I had developed anti-bodies to Tysabri.  If only we had waited a few more hours for that last test.  Damn it. 

The next few months I grew really sick and spent time in the hospitals and it went by kind of fast as we tried to discover what was wrong.  Once things settled down in July, I met with my specialist to discuss yet another MS drug option.

This time I was going to join the pill gang, starting on a daily pill called Tecfidera, a drug that had just been approved in March.  The side effects were to be mild, just some nauseous feelings and flushing.   I was surprised for the first few months I didnt experience anything.  I thought perhaps we had found my answer.  And it was in a pill...no needles needed!

But...then I started to feel really yucky.  By this time I had learned to listen to my body pretty well and could pinpoint which drug was causing what.  And tecfidera was making me feel like (excuse my language mom) shit.  

So after a few months, I had yet another conversation with my specialist...possibly this drug wasnt working.  And possibly we should stop it since I wasnt handling it so well. 

And then came the monumental moment.  I looked back on my career as a MS sparkler and realized I was injecting and infusing and swallowing these horrid drugs with horrid side effects with no results.  The purpose they were to fulfill, that of managing my MS, was not being met.  

As each day went by without taking a MS management drug, I grew stronger.  I felt better.  My body was detoxing from all the months of liver abuse and I was feeling good.  

I started to question: were these drugs worth it?  They hadnt been yet.  What was I going to do in the future?

My specialist obviously wanted me on another drug asap, like yesterday.  He suggested Copaxone, a very common drug, a daily injection, one with less side effects.  It sounded good.  Until I realized its chances of working were about 30%, in a normal person.  Which made me hesistant on the chances of working on me.  We hadnt pursued it yet because it's considered "weaker".  But at this point, it was my only option next to low level chemo.

From my point of view, this was a high risk, low reward situation.  The high risk was monetary loss (due to paying for the drug) and damage to my body.  The low reward was in the hopes that it might possibly work. 

Maybe. It might work.  It probably wouldnt work.  

I know we're suppose to be optimistic and all but given my track record, how could I be optimistic about a drug?  

I delayed as much as possible but the day finally came when I was cornered.  My specialist wrote the prescription and told me I needed to go on it.

And I said no.

I dont think he is used to his patients saying no to him.

He asked if it were the needles - nope.  He asked if I needed financial help - I said when it comes to my health, finances arent a concern.  He then proceeded to tell me that I didnt have any other options, I had to be on a drug.  I had to inject myself daily for 9 months (which is how long it takes to determine if this drug is working).  I had to.

Yes, in his eyes, I had to.  It was a liability.  

But in my eyes, it wasnt worth it.  

He explained to me that yes, taking this drug for months is a risk, because there is a high chance it wont work.  But I'm taking an even bigger risk by not taking it. 

Which I completely agree with.  I was taking the bigger risk.  But to me, the reward was a side effect free life, something I craved, something that I needed.

He made me promise to think it over for a week and give a final answer then.  I agreed to that and really did pursue my thoughts for a week.  

But my answer didnt change.  I was not going to, at this time, start a new drug, specifically Copaxone.

A few months pass and Im feeling good about my decision.  I feel stronger, my body just feels more whole.

And then I had to get a MRI.  And guess what ladies and gents?  I had new lesions.   I had new activity.  I had new symptoms.

Of course meeting with my specialist was just really wonderful.  I knew what he was thinking: I was reckless, and look what happened. 

But really, chances are, these lesions wouldve come regardless if I was on Copaxone or not.  And I think deep down he knew/knows that. 

So yes, I'm recovering from active lesions currently.  And I'm still content with my decision.  I am starting a procedure outline with plasmapheresis in hopes that it will help manage the disease some.  Currently I am starting once a month procedures and we will determine if we should go with more or less as time goes on. 

(Had my first management plasmapheresis session today...blood. everywhere. lovely)

My MS drug story is crazy.  It feels like years when it's been only months. 

Im quite possibly taking more years off my life by not joining the ms drug movement.  But, this way, I get to live.  I get to spend less time in bed and more time in the sun.  My MS is growing yes and its awful.  And I know I cant go ms drug free forever.  But I'm willing to take the risk currently for my overall well-being.

So why am I sharing this MS drug story?  It's DEFINITELY not to make anyone who is on a MS drug feel bad or think about coming off it.  Not at all.  If you have found a drug that works, praise the Lord and stay on it.  

But do your research.  Pursue a second opinion.  Make friends with your pharmicist.  Dont just take a drug because your doctor is besties with the drug rep.  Wait till all your bloodwork comes back before doing a monthly infusion.  Talk to your doctor if your side effects are creating more trouble than the designed help it is supposed to bring.  

And also, hope for more research.  Id be on a drug right now if it had a chance of working higher than 30%.  I WISH I could find a drug that worked and slowed down this disease.  I wish there were more therapy options, more procedures available.  I wish there was a cure.  

My life is dependent on all these hopes and wishes.  Well, not my life lived but the longevity on my life.  My quality of life.  I can only go so long before another big one hits again.  Im thankful that this last episode (optic neuritis and lost of sensation in my right arm) is minor (minorish...it's not fun hah).

This is why I'm doing this.  This is why there is even a "The Sparkled Life", why I put my life out there for everyone to see.  I dont want to be defined as that girl with MS.  But if it means awareness, if it means creating hope and support for those that need it, if it means finding something to help my search in slowing my disease down, then I'll keep doing it.  

Because we're worth it.  

You're worth it.

I'm worth it.

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.