#aubagio

TRATAMIENTO FARMACOLÓGICO DE LA EM A pesar de que a día de hoy no existe una cura definitiva para la Esclerosis Múltiple, en los últimos años ha habido un cambio sustancial en el tratamiento y en el manejo de la enfermedad, gracias a la aparición de nuevos fármacos que modifican su curso. En la actualidad, son trece los tratamientos farmacológicos en el mercado que modifican el curso de la…

Two nights in the last week, Thommy and I have sat in bed, with the Omron 7 Series Upper Arm Blood Pressure Monitor between us, and stared at the reading – “78/45, Pulse 52” – and we played one of our favorite games: ‘911 or nah?’

We play this game often.  We’re getting better all the time.  About a week before I was diagnosed with POTS, I passed out in the shower.  This was my first tip-off that something was probably seriously wrong.  After 15 minutes of “discussion”, it was decided I would go to work anyway.  (READ: After lots of exasperated threatening and ultimatums, *I* did what I always do, which is to just do what *I* want to do, because moving forward no matter what was the only way I knew to keep propelling my life forward, knowing deep down that as soon as I gave in to some of these things, I would have to give up everything.)

Then, about a week later it happened again.  Ok, this time I’ll go, I said.  But no 911, we can drive, ok?

But first I need to shave my legs.

I can’t imagine one person reading this, save Thommy, will understand this AT ALL.  But I’ve been to the ER so many times, that I knew if they admitted me, it might be days before I could shave, and the only thing worse than those hospital gowns and socks, is feeling your own prickly, sharp legs hitting each other while you shift endlessly trying to find a comfortable position.  You’re in so much pain.  You are so helpless and there are times when you barely feel human; having the continually growing hair poking me reminds me, in those moments, that I am at once alive but unable to do anything with, or about, that aliveness.  It’s a bizarre mile-marker, and I don’t expect anyone to understand, but unless I am bleeding out on the floor from a severed artery, Thommy knows that I’m going to ask for time to shave and then brush my teeth.  If you can’t be stubborn in the face of ER visits (which have brought literally life-changing diagnoses for me, no less than 3 times) than you aren’t going to be able to handle life when you leave.

And furthermore, I knew, because us hospital-dwellers know this, that if something was wrong with my heart, there was a good possibly my body might start to swell; and if you are a patient prone to swelling, doctors check your ankles to monitor this swelling.  I can withstand any number of awkward, uncomfortable, humiliating, pride-diminishing moments at the hospital – but I draw the line at having to suffer my own stubbly legs, and the unconscious and uncontrollable flinch that will occur every time a doctor, nurse, or aide (or loving husband looking to provide reassurance) tries to touch my unshaven calf. No.  I’m not doing it.

It’s a secret language I’m speaking, I suppose, with no currently available interpreter.  I accept that this seems preposterous and unimportant to most anyone reading.

So anyway, I shaved.  And we went.  And I was diagnosed with POTS.  And I couldn’t stand up without blacking out.  Fuck, sometimes it even happened sitting down.  And so I went out on a short-term disability, which led to a long-term one, which led to a permanent one.  That was the last time I would work.  I haven’t worked since 2015.  And I am losing my mind.

Literally.  This is not just a meme.  This is not temporary.  This is my everyday reality.

  In the past 12 months, I have endured the electrifying anxiety that comes from researching, deciding-on, starting (and then ultimately stopping) three MS medications.  THREE.  In one year.  First, I tried a monthly infusion called Tysabri, but then quickly developed something called the John Cunningham Virus (JCV).  In people with suppressed immune systems, this can (and does) lead to something called Progressive Multifocal Leukoencephalopathy, or PML.  People can (and do) die from this.  So MS patients receiving Tysabri are monitored every 3 months or so for their levels; it usually takes about two YEARS of monthly infusions before patients become JCV positive.  I became wildly infected (like, an exaggerated titre level, laughable, almost), after only two infusions.  After all the trepidation and suspension of “worst-case-scenario” imaginings, my body only lasted two months.

FUCK.

Then, despite my strong hesitation and vocalized resistance, my local MS neurologist switched me to Aubagio which is a pill you take daily.  Since I don’t have a large intestine, and food, liquids and pills all fly out of me at warp-speed (you’re welcome), causing any number of malabsorption issues, I didn’t think this was a good idea.  Plus it can cause nausea, headaches, cramps, diarrhea, vomiting… if those sound familiar to you it may be because you’ve heard me complain on a fairly regular basis of having all of those symptoms anyway.  It also causes your hair to fall out.

But OK, at this point, I felt like the MS was winning, so I agreed to start it.  I made an appointment at my salon and cut off most of my hair thinking I could game the system. There – take that vanity.  Let’s do this. (I cried when I got home, and then again the next day.)

The month I was on Aubagio was a nightmare hellscape.  Imagine a 24 hour flu that also causes you to suffer periodic amnesia and not know what day, time or month it is.  I wouldn’t leave my bed for 3-4 day stretches.  If the hair had miraculously stopped growing on my legs, I don’t know that I would have showered that entire month.  I have Cottenelle wet wipes, I thought. I have dry shampoo!  Fuck standing, just leave me to here to waste away.  Then all of a sudden, as I tried in vain to find a comfortable resting position, one leg would hit the other and I would snap back to reality, cringe at the unbearableness of my own body, and shower.  Then I would, quite literally, collapse back into bed for 3-4 more days.

By the time we got to Duke and my new neurologist, about 35 days after starting Aubagio, I was ready to give up on everything and just ask for my name to be placed on some kind of Stem Cell Transplant waiting list, or start chemo, or do whatever he wanted me to do as long as it didn’t involve swallowing one more pill.  When he said I could quit Aubagio, it felt like a stay of execution.  I left this appointment with a “pick your poison” bouquet of stat sheets on 3 different infusions I could try.  All, obviously, with very serious side effects, including Jackpot Winners like kidney failure, hepatitis, cirrhosis, thyroid disease, melanoma and breast cancer.

I choose the one more likely to cause breast cancer.

I did a detox to rid myself of the Aubagio and that was even worse than the previous month.  Despite the bottom rising up to meet me, I experienced one of the rarest things I had in 2 years: a night of energy, joy and no pain.  Thommy and I went to a lighthouse on Oak Island, and to Caswell Beach. It was everything:

And finally, on August 14th, we started the journey of Ocrevus and Infusion #1.  We left the house at 6:30 am, and got back home around 9pm.  The 100mg of IV Bendadryl, plus the allergic reaction, have made the details of the day just a sketch; another day in this nightmare that I wish I could say started in 2009 with my MS diagnosis.  But really, it started when I was maybe 2 months old when I first started displaying symptoms of Hirschprung Disease.  So I can safely say this is all I know and nothing I ever hoped for, obviously; it is barely something I can still imagine is happening, even as it’s happening.  I don’t want it anymore.  And the crazy part is – I was the lucky one that day.  The hours passed by in blinks, and even though I was the one who had to get stuck 3 times as they tried to find a spot for the IV, and even though it was me pumped full of steroids and a bag with a toxic sticker on it, Thommy was the one that sat in a bullshit-excuse of a chair for that ENTIRE time.  No drugs.  No warm blanket.  Fuck it babe, I don’t want it for your anymore either.

But more than all of that lately, I can’t stop thinking of the rapidly expanding schism between me and every person I know and love.  This is obviously, obviously, not their fault nor their problem.  What it is, what it’s always been, is this race that I’m running to try to keep up with LIFE (my life, their lives, our lives) while existing almost entirely in an isolated dimension of a life suspended.  There is no mooring to tie myself to, nothing to define myself other than symptoms, disease management, medications, side-effects…

How do you speak that language and still talk to people.  If it wasn’t something I was actively experiencing every minute, of every day, I’m sure there would be a way, because  I’m constantly screaming to myself, “YOU ARE MORE THAN YOUR DISEASE(S).”

Well, I know that.  Truly, I do.  But that’s also kind of a lie I like to tell myself.  Because at any given moment, whether I’m sitting in a cloud of confusion that makes my brain feel like it’s on fire as it tries to decipher what the person I’m talking to is saying to me, or whether I’m focusing on various focal points to keep myself oriented as I stand so that the vertigo doesn’t overcome me, or stuffing down the near-constant sensation of dry-heaving so that I don’t throw up in public, or willing myself, literally conjuring all the cells in my body to communicate with each other so that I can stand for 5 minutes while I talk to someone I’ve stumbled across in public, I am actually these diseases.  It vibrates through my body like a tuning-fork and it never, ever stops.  It is a body electric, and it never shuts off.

Despite what people may see when they look at me, I do not ever feel like a body of blood and muscle and bone.  Nothing in me pumps, flexes or supports.  I am more Jell-O than I am human (or just plain gelatin, depending on my hydration level).

And so when I talk to people, or when I try, to there is this voice somewhere inside that ricochets as I try to swat it away; it’s constantly asking “could this person you’re speaking to be you… could they live like this?” …

I try to make it stop but it’s constantly growing louder.  Could this person, this physical specimen in front of me, with undoubtedly all their own problems and diseases and anxieties and sorrows and pains, could they lose their job tomorrow and turn into a human shaped heap of Jell-O and still get up everyday to a life shattered down around them? And could they pick up those pieces and build a new life?  Can they even comprehend what you’re wondering?  And when I get to my penultimate question, my heart skips one of its tiny, faint beats: Have they ever had to do it before???

Because in that moment, my brain and my heart, that are always asking and searching, wonder one last thing:

Can they show me how?

***

(Note: as I typed this in a haze of frustration and fear, I’ve been watching MSNBC and it’s coverage of Hurricane Harvey and the potential devastation about to befall parts Texas.  I think back to Katrina and how so many people looking to escape it’s path were evacuated to Houston, which is now staring down the barrel of another gun.  And I think of Yemen (if you don’t know about one of the worst humanitarian crises ever that is decimating that country, you should educate yourself and then do whatever it is you do in the face of such suffering, whether it’s monetary or verbal communication between you and your god).  And I think of Heather Heyer’s family.  And I know, as I’ve always known and always said, that suffering is happening on scales NONE of us reading can understand; just as I can’t understand evacuating my home under the threat of 30 inches of rain to possibly never return, or losing a child to cholera, or having a daughter killed by a Nazi.  I know an untold number of us are forced at least once in our life to lose everything and build it back up anew.  And again I ask, HOW?  I really need to know.)

Burt Northwestern Stem Cell MS Trial Part 3: Funding, Patient Perspectives, & the Future

Today’s post is the last of a three-part series on the Burt stem cell trials at Northwestern. This piece is focused on funding and the future of the trial, and also includes perspectives from patients.

You can read Part 1 here and Part 2 here, which focused on issues related to potential encouragement of patient fundraising that unintentionally releases private information and on concerns over…