Monday, October 16, 2017

Pharmaceutical Company Events and Chronically Ill People: Dos and Don’ts

I have had the opportunity to attend a lot of events as a result of my blog.  Many of these events are hosted by pharmaceutical companies.  Even the most “patient friendly” or “patient focused” events aren’t perfect.

I’ve had several experiences over the past year that have left something to be desired.   

Last summer, I was attending an event in Miami.  The turnaround time was 36-hours.  I knew this was crazy.  But the reason I didn’t fight it was because the one other time I asked if I could extend an offer an additional night due to the quick turnaround time, I was very firmly rebuked – only to find out later that other attendees had asked for the very same thing, and got it.

Back to Miami.  The hotel was absolutely massive.  So when it came time to meet the car to take me to the airport, I couldn’t find it anywhere.  I was so frazzled.  A chronic friend of mine who was also attending, got on the phone.  It took us almost 45 minutes to find the car.  Finally found the car.  Got to the airport.  The gate was changed four times, necessitating me having to run through the airport, and the flight was ultimately cancelled.  I spent six hours waiting in line, only to have to get out of line when I was five people from the front to make sure I caught the flight I booked on another airline while I was standing in line. 

All in all, the event was a disaster.  When all was said and done, I was up for almost 60 hours straight.  I had to take a day off of work to recuperate.  This experience still gives me nightmares.    

I understand that event planning is difficult.  And I’m sure that this is even more complicated when you are working with chronically ill people.  I also know that some of this was out of the control of the event planners, but some of it was not.     

Do

1.       Include chronically ill people in the planning of the event.

Nothing about us, without us, right?  We know best what we need, so why not include us in the planning?  Why Miami at the end of June?  That heat and humidity really isn’t conducive to having RA and being a functioning human.  But they didn’t ask, so how would the event organizers have known that?  This might not hold for events that cater to multiple illnesses, but for events that are focused on one illness group, I think this is imperative.

2.      Provide a welcome or swag bag that includes snacks, but don’t provide too much stuff that attendees will then have to figure out how to get it all home.

I love getting swag at conferences.  Especially snacks that I can take on the plane with me when I leave.  But a huge pet peeve is being given so much stuff that I don’t have room to pack it.  I’ve learned to travel light, especially when attending events that have a quick turnaround time, so I usually have very limited space available for giveaways and the like.

3.      Include breaks, and let attendees know that it is okay to remove themselves to take breaks if they need it, in addition to assigned break times.

You might not think you have to tell patients this, but I always feel relieved when this is said out loud. 

4.      Have the event and accommodations in the same location.

This makes it much easier for attendees so that they can go back to their room and rest if they need to.  If you can’t hold the event and accommodations in the same location, provide a “wellness room” or other place that attendees can go to relax, refresh, and even nap.

Don’t:

1.      Make the turn-around time too short, and make travel arrangements that make sense for the attendee.

It’s not as easy for chronically ill people to bounce back, so it’s unrealistic to expect someone to spend such a short amount of time in one place, and so much time traveling.  When most chronically ill people ask this, it isn’t because they’re trying to take advantage.  Additionally, while assigning someone to the earliest flight out and latest flight back might seem like doing someone a favor, this is not convenient for many chronically ill people.     

2.      Have the event at a venue that requires a lot of walking.

You don’t want to tire people out just from them walking from their room to the part of the hotel where the event is being held. 

3.      Assume that when the event is over, your commitment to the attendees is over, too.

While not everything that happened was the fault of the pharmaceutical company, you can’t just fly someone out to a strange city, hold an event, and then say goodbye, never to be seen or heard from again.

4.      Treat people differently. 

You can’t say that one person can stay an extra night and then tell someone else they can’t.  Obviously, I’m not referring to people that have specific dietary needs and other things like that.  But if one person asks to stay an extra night because it’s difficult for them to travel, and someone else asks the same, you can’t say “yes” to one and “no” to the other.  Plus, we know each other and we talk, so there’s that. 

With everything that happened after the event was technically over, such as not being able to find the car and having my flight canceled, I shouldn’t have been on my own at that point.  There should have been someone I could have contacted who could have helped me.  It didn’t help that by the time my flight was canceled, it was after 11 p.m.  But still…

Ultimately, I did get reimbursed for the flight I purchased, and the company got reimbursed for the flight I didn’t take, because I made sure they did. 

I left feeling like I might never attend an event run by this particular pharmaceutical company again.  And that makes me sad.  But I can’t miss work to attend an event, only to miss more work because things went so poorly that I need to recover from it.  It wasn’t an oh wow, my mind was so blown that I need time to process kind of recovery.  It was more of an I’m so stressed and my brain and body are so fried that I need rest kind of recovery. 

I never want to seem high maintenance, but if high maintenance means looking out for myself and caring for myself, then I guess that’s how it is going to be.

And I also don’t want to be seen as ungrateful, because I am so honored and grateful for all of the opportunities I have been given.  But, and this is a big but, events that go the way this one did suggest that this company doesn’t know how to work with chronically ill people, or hasn’t sought input from chronically ill people about how an event that includes them should be run.

I’ve also had a few more recent experiences that have left something to be desired.

1.       In one instance, I had one screening call for a pharma advisory board.  Then there was a second call, which because of the time options, I had to take in my car during my lunch hour.  I didn’t make a big deal about that since it was a relatively short call.  A third call was scheduled, but all time options during the day, and for a significant chunk of time.  Even though they are paying for this third call, like I said, it’s during my workday.  I emailed the organizers to point out that all of the options were during the workday.  So what am I to take this to mean?  Because I’m chronically ill, I shouldn’t work?  Or that opportunities that come around here and there should take precedence to my full-time day job that is consistent?  I have struggled with having to say no to things, but this circumstance is really forcing my hand.  The big problem is that I have to take unpaid time for this – even though the call is paid – because I have no paid time off left because I’ve exhausted it going to doctors’ appointments. 

2.      In another instance, I was asked to be part of another group.  I jumped at the chance.  I didn’t hear anything finalized, so the week the event was supposed to take place, I reached out to find out if it was happening, and was told that it wasn’t.  I was then asked which of two dates would work for me.  At the time, I said they both did.  Again, several weeks went by and I didn’t hear anything.  Because I’ve been dealing with some health issues, I ended up having to schedule an appointment for one of the dates, so I emailed letting them know that I would only be available the one date.  I then received an email that they had finally decided on a date, and it wasn’t the one that I could attend.  So thanks for playing.  While I don’t expect events to be rescheduled because of me, I don’t appreciate the lack of care for my schedule.  No one reached out to say the originally scheduled call wouldn’t be happening until I asked. 

Does any of this sound patient-friendly or patient-centered?  Not to me.  Being patient-centered means more than bringing patients to the table once a year.  It means more than throwing money at patients, but treating them like crap.  It means really understanding what patients go through and experience, and the struggles that we face. 

Call it FOMO (fear of missing out), but I have to call out a bad opportunity when I see one.

And here’s a really, really important tip:

Don’t treat people who are going to blog about you like crap.

I’m not going to lie.  I hold organizations and companies that work with patients to higher standards of how they treat patients.  And unfortunately, a lot of times, they fall short of the mark. 

I had originally written this post for another site that I blogged for, but they didn’t post it because they didn’t want to damage their relationships (read money) with big pharma.  And then they told me I couldn’t write for them anymore.

Mike drop.

Leslie out.   

(So I’ve really struggled about whether to add to this post and share it, but because there continues to be a glaring lack of “getting it” that I just can’t handle anymore, I felt like it needed to be said.  I hope that people will read this and take it turn out.  Patients want to help.  I want to help.  But I can’t help at the expense of myself.  So please, let myself and other patients be part of the solution.  Let us help pharma.  Helping pharma starts with including patients in a meaningful way.)

Thursday, October 12, 2017

“Real Life Diaries: Living with Rheumatic Diseases”


In honor of World Arthritis Day, I’m excited to announce that “Real Life Diaries: Living with Rheumatic Diseases” has been published.



I’m honored to share this title with you, my story, and the story of others living their best lives with rheumatic diseases.

The book is available now on Amazon:



Thursday, September 28, 2017

New Doctors, New Problems

To be clear, this post isn’t about having problems with new doctors.  Quite the opposite. 

I finally found a rheumatologist that I like!

And I finally found a PCP that I like! 

But the problems is, the more doctors you see, the more problems they find.    

It all started with the foot doctor, actually.  I found out recently after seeing a foot doctor that I need foot surgery.  But before we went forward, my foot doctor wanted me to have a circulation test.  When I went in for circulation test, my blood pressure was 124/100.  The doctor put me in a different room and had me lie down.  Half an hour later, my blood pressure was the same.  He told me that he couldn’t do the circulation test, that I needed to have my blood pressure evaluated, and that if I showed up the day of surgery with a blood pressure like that, he wouldn’t be able to do my surgery. 

So I scrambled to find a new PCP, someone I could tolerate, who could help me navigate this issue.  The truth is, as I told the foot doctor, that since I’ve been sick, my diastolic blood pressure has run high, but no one ever seemed to care that much about it.  I think I can count on two hands the number of times in the last almost 10 years that my blood pressure has been normal.  I guess I just have enough other things wrong with me that high blood pressure wasn’t really that concerning to anyone.

But now it is.  Now it’s standing in the way of me and my “new” foot. 

I saw this new PCP, who I happen to really like.  In a matter of two weeks, I will have had lab work, a renal ultrasound, an echocardiogram, and two appointments with said PCP.

I am also now the proud owner of an Omron machine, as my PCP strongly recommended that I take blood pressure readings at least twice a day for the two weeks between appointments.

And although my PCP had told me that she wouldn’t put me on any medication until my next appointment, apparently test results and previous labs and records changed her mind.  So I am now taking blood pressure medication.

And in the back of my mind, I’m thinking – all of this for a foot? 

I should be grateful that something that has seemed problematic for such a long time will finally be figured out.  But honestly, I’m overwhelmed.  I can handle pain like a champ.  I’ve learned to deal, learned to live with it.  But the fact that my body can’t get control of something basic so that it is supposed to control is honestly really scary. 

Obviously, the hope through all of this is that I will get medical clearance and will be able to go forward with my foot surgery, which is currently scheduled for mid-November.  But it feels like there are a lot of hurdles to jump between now and then, and I do have a bad foot, after all.


This is the Wildcard #2 prompt – New Doctors – for RA Blog Week 2017. 



Sunday, September 24, 2017

My Public Comment On Graham-Cassidy

I don’t usually post on the weekend, but I wanted to make sure to get the word out.  There’s still time – until 9:00 a.m. (eastern) on Monday morning, September 25, 2017 – to submit a public comment in opposition of the Graham-Cassidy bill.  Below is the comment that I sent to the Senate Finance Committee on Friday morning regarding the bill.

If you’d like to submit a comment, email GCHcomments@finance.senate.gov.   

We must fight for the right for healthcare, especially for the most vulnerable among us.

I am one of millions of Americans with a pre-existing condition.  And based on what I’ve read, I could see insurance premiums that would cost me more than I earn in six months. 

Graham-Cassidy would effectively destroy my life and make it worse than just living with multiple pre-existing conditions. 

Our society is built on the idea of the American Dream.  Not only would Graham-Cassidy destroy my life, it would destroy my dreams.  I have a PhD, and yet, I won’t be able to afford food or rent, and definitely won’t be able to afford the medications I need.  If I won’t be able to afford my medication, I won’t physically be able to work. And I know that our government will make it impossible for me to get disability benefits if I can’t work. And if I die, I know the government won’t pay for my funeral. 

So basically, you are throwing the baby out with the bath water.  You are taking a leaking ceiling and rather than fixing the leak, you are tearing down the whole house. Does that make any sense?  Didn’t think so.  And neither does this bill. 

As politicians, you have power.  And with that power, comes responsibility.  So voting for a terrible bill simply because of campaign promises to “repeal and replace”, and following through on those promises at any cost, is an abuse of power and dereliction of duty.  Replacing something good with something that is far worse is simply not an option.  It shouldn’t even be on the table. 

The productivity that this country will lose for all of us who become too sick to work without having the necessary coverage we need to function, will be profound. 

And it profoundly saddens me that to make yourself feel better, you will potentially hurt and/or kill millions of people. 

So please, if you believe in the American Dream, if you believe that America can and should be a positive example for the rest of the world, and if you want to use your power for good, vote no on Graham-Cassidy.  The ACA is not perfect, but Graham-Cassidy is much, much worse. 
I didn’t ask to be sick.  It’s not something I planned on happening at age 22.  And I have been fighting for nearly a decade to live.  Graham-Cassidy calls all of that into question. 

I hope that you will not turn your back on the millions of people that aren’t hurting you by needing healthcare, but will be very hurt by not having it.  

Where is our humanity?  What happened to empathy and compassion?  Please stop and prove that all of these things still exist in our government today.

Thursday, September 21, 2017

Too Rich To Be Sick, Or Too Cruel To Be Kind?

There is so much going on in our world today that is simply heartbreaking.  The things that are happening are beyond words.  But one area of my life where I refuse to be silent is where my healthcare is concerned.  And right now, a bunch of rich, white men are trying to take my – and your – healthcare away.  And as far as I can tell, the only real reason why they are doing that is because they can.  

The last time I checked, no one – rich or poor – has emptied their pockets to pay for my healthcare.  The only one who has been bled dry physically, emotionally, or financially, is me.

So please, stop putting forth this argument because it is convincing those in power, whether they should be or not, that healthcare is a commodity, that it will be bought and sold to the person that can pay the highest price.  Except the highest price isn't monetary.  It's life.  And death.  

It's a zero sum game.  Because the rich will win again.  They can buy their way out of almost anything.  I worry now more than ever that what I thought was the most difficult fight of my life, the daily battle of living with chronic illness, didn’t start almost 10 years ago.  It’s starting right now.  It’s starting with convincing those in power that my life is worth living.  That even though I am sick, often in pain, and may have more medical expenses than my “normal,” healthy 32 year old counterparts, my life is valuable nonetheless.  

Let me explain how my life works at the moment.  I take no less than seven pills a day.  On most days, that allows me to function; to wake up, eat breakfast, sometimes take a shower, drive myself to work, work an eight hour day, drive myself home, and make dinner for my boyfriend and I.  But do you know how tenuous that is?  I don’t even have a day grace period.  If I forget to take my medication or run out of my medication, I have one day before I will feel like I got hit by a truck and will barely be able to get out of bed.  Sure, my illnesses are managed, but only by medication and a crack team of doctors.  And because I can afford all that.  Because the moment I can’t, almost 10 years of hard work will have gone completely down the drain.  I will have gone from living life despite illness, to not living at all.  

I didn’t ask for this.  I didn’t ask to part with a large portion of the money I make to go towards medical expenses.  I didn’t ask to literally use all 10 days of my paid time off every year to go to doctor’s appointment after doctor’s appointment, only to take unpaid leave for all the rest.  It’s insulting to suggest that somehow I benefit, or somehow others lose out, because of my healthcare needs.

Then you have rich white boys who think that they can go from rock and roll to politics and they further arguments such as this one – that their pockets are being made thinner because I am sick and they are not.  Someone in my home state of Michigan is vying for a senate seat and this is an argument that they are furthering. That some people are sick and everyone shouldn’t have to pay for it. But isn’t that the whole concept of insurance? You pay into because some day you might need it? 

So basically you’re too rich to be sick? I guess it’s more the case that if you get sick you can afford to pay out of pocket. I can’t. Read my lips: without medication, I...WILL...DIE.  And when that happens, I assume no over-privileged white guy is going to pay for the funeral. 

I think it’s important, though, to acknowledge that there are people out there, celebrities, who are bringing awareness to chronic illness and chronic pain.  However, they have money, too.  When one cancelled her tour,  she was able to do that because she can afford to take time off.  When another got a kidney transplant,  she didn’t have to worry about taking time off for it, or not being able to afford the surgery or the anti-rejection drugs she will need to take for the rest of her life – even if she someday finds herself without insurance.  So when the U.S. Pain Foundation applauds these folks, and states that they prove that “Pain is an Equalizer,”  I call bullshit.  It’s true that just because you’re rich, doesn’t mean that you are immune to pain or illness.  But you certainly don’t deal with it in the same way that someone who has to decide whether to take care of their health or pay their rent does.  They can take the time they need to recover.  Most of the chronically ill people I know cannot.  And that needs to be acknowledged.  

I feel that the current healthcare debate has drawn a line in the sand and made it more apparent who the “haves” and “have nots” are.  And with that comes a profound feeling of being left in dust, of being hung out to dry.  And that no one beyond those in my inner circle care about what happens to me.  That not even my own government cares.  And why should those who will never have to want for anything care?           

What these people fail to realize, is that with this impending decision, we all pay a price.  For me and my chronic peeps, not being able to afford the care we need will mean we are less productive and less able to do the things we want and love to do.  In a lot of cases, it might even mean that we die.  Not having our contributions will diminish us all.  But the rich people that want to turn their backs on the rest of us, a small part of them will die, too, because deep down, they know what they are doing is wrong.  And they simply don’t care.    

What happened to our humanity?  What happened to empathy and compassion?  What happened to helping each other out, out of the goodness of our hearts?  The money you have doesn’t make you a good person.  It’s how you treat others.  It profoundly saddens me that this is what our country has come to.  And I hope that for all of our sakes, we win this fight.  Because if we don’t, we all stand to lose, some of us more than others.  

Tuesday, August 22, 2017

When You Are “Protected” From Your Protected Health Information (PHI)

I recently had to obtain my medical records from the rheumatologist at Mount Sinai Hospital that I saw while I lived in New York, and the records for my two most recent appointments with my now technically “old” rheumatologist at the University of Michigan Hospital.

Recall that I had obtained all of my other previous medical records from the University of Michigan before I moved to New York, and that was total chaos to the tune of $361.26 (Read: What Happens When Your Medical Records Aren’t Yours?).

Well folks, they’ve done it again.  And by “they,” I mean the medical industrial complex, the geniuses who got the idea that patients should be charged to obtain their own protected health information.  That information is so protected that even, I, the patient, cannot have easy access to it.  That is, of course, unless I pay for it.  So I can access it, but it will cost me more time and money, over and above the cost of living with illness itself.      

This time, I legit don’t care about the money.  Between the two requests, I’m out just under $25.  It’s the principle.  I can understand that if you’ve already obtained the full version of your medical records, if you needed additional copies that there might be a charge.  But to obtain any part of your record for the first time?  It simply shouldn’t be allowed.  And if it’s going to be allowed, then these facilities need to follow their own rules and policies, which as far as I can tell, they aren’t.   

For the Michigan records, the form clearly states that I wanted to receive a call regarding the charges before the request was processed.  THAT NEVER HAPPENED.  The form also states that there will be no charge for record requests that are one (1) to 75 pages.  However, I was charged a “reproduction fee” and shipping, which cost more than the “reproduction fee”.  I think “reproduction fee” is a fancy way of saying, we’re going to get you, but by giving it a fancy name, we’re going to make it so that you can’t fight us on it













For the Mount Sinai records, I was charged over $10 for priority mail.  The records could have been mailed cheaper, I have no doubt about that.  But I had no choice in the matter.  They sent them how they sent them, and made sure the bill was on the top of the pile. 


I assume that the records – from a hospital in Michigan and a hospital in New York – both came from the same address in Atlanta because both hospitals use the same electronic medical record (EMR) program.  This protected health information is so protected that information from Michigan, New York, and who knows where else, ends up in Atlanta for printing, and costs me money to ship back to me.  Sounds really safe, doesn’t it?  My information is really protected when it lives in one place and is sent to another place just to copy and mail back. 

I don’t understand why these records are so valuable to the people that are charging me for them.  But they are valuable to me.  They are PRICELESS.  I need this information.  And to date, I have found no EMR system that is able to provide the level of information that the actual paper record provides.

Why should I have to pay for the record for services when I’ve already paid high costs physically and emotionally for the services that have been provided?  It’s adding insult to injury.  It’s telling me that someone is more deserving of my information than I am.    

And who’s benefiting from this?  Not me.  Not the patient.  Not the person who has to shell out money for the sake of continuity of care.  So I ask why?  Why are companies doing this?  There is no explanation other than making a profit.  Well guess what?  It’s criminal.  It’s profiting off of the pain and suffering of sick people.  And I’m literally and figuratively sick and tired of it.  I shouldn’t have to fight, or pay, to get access to my own information.  No one should.  There has to be a better way. 

I guess in reality, PHI really means protecting patients from themselves.  But I don’t want this information kept from me.  In order to be a fully engaged patient, I need to be able to access my medical record.  I fear that what actually occurs is not protection but highly unsafe and poses risks to everyone, and people will suffer even more by not having access to information, that as patients, we so desperately need.  Nothing about us, without us, right?

As far as I can tell, my information can be farmed out to companies across the country and they have an easier time getting their hands on my information than I do.  I should not be obtaining this information on an as needed, or need to know basis.  Having FREE and EASY access to my protected health information should be a right, not a privilege. 

Have you had this happen to you?  Please share your stories in the comments, and share this post with others. 

THIS NEEDS TO STOP, NOW!!!       

Friday, August 11, 2017

Dear Dad, It Has Been Three Years...

Dear Dad,

I can’t believe that it has been three years since you’ve been gone.  It’s so hard to imagine that time has gone by without you.  And yet, it has.  I remember, in the beginning, feeling like I would never be able to breathe again, feeling like I would never be able to put one foot in front of the other again. 

I can still remember going out to celebrate my birthday, unaware and carefree.  I remember getting home, seeing pictures of the flood on Facebook, and texting mom to make sure everything was okay.  I will never forget her telling me that she didn’t know where you were.  I’ll never forget the text Molly sent me at 6:00 a.m. the next day, telling me that you never made it home.  I remember calling the Michigan State Police from New York and telling them that they had to look for you, that someone needed to look for you.  And they assured me they would.  They didn’t.  No one did.  Only your family did.  And in the end, the stranger you talked to that night found you the next day. 

And I remember the call that came at 9:00 p.m. on August 12, 2014, from mom, telling me that you had passed away.  I remember crying uncontrollably, and repeating over and over again that I didn’t understand.  In all honesty, I still don’t understand.  I don’t understand how something like this could have happened to you.  I don’t understand how something like this could have happened to us. 

And I remember booking a flight.  I remember showering at 1:00 a.m.  But I don’t remember packing a bag.  I don’t remember the taxi ride to the airport.  I don’t remember waiting for the flight.  I don’t even remember the plane ride.

I do remember getting to Michigan and hugging Molly the tightest and hardest I ever have.  I remember her friend trying to coax her to eat a bite of a bagel.  And I remember thinking that I never realized that 20 year olds could display such compassion and selflessness. 

I remember seeing you in your casket.  It’s an image that will never be erased from my mind.  I remember thinking that you looked like you but not.  I don’t remember how I held it together, but I think I barely did.  I couldn’t breathe, I couldn’t think.  The heart takes much longer to process what the mind already knows.    

And I remember that I was shocked at how many people came to your funeral.  Not because I didn’t know that you were loved, but because I didn’t know how much and by how many people.  And it showed how many lives you had touched in your own way. 

I remember bits and pieces of the service.  Someone told us that they saw a goldfish cracker lying under a pew at the funeral home.  YOU.  I remember a moth flying around the limo on the way to the cemetery.  You were there.  And, in my greatest time of need since you died, you were there.  I know you were, you had to be.  And I have to think that going forward, you will be there even though you won’t physically be there.  In the moments that I need you.  In the moments when I want you to be there. 

It’s so unfair all of the things that you’ll miss in the future, and all of the things you’ve already missed in the last three years.      

In three years, so many things have changed…

I graduated from Sarah Lawrence, my then boyfriend and I broke up, I moved back to Michigan, I got a job, I got a new boyfriend, I got an apartment, Bubbie passed away, Molly got into PA school, and Molly graduated from Wayne State. 

This is not just a list.  There has been sadness and happiness.  And it has taught me that I can still feel, whether good or bad. 

And in three years, so many things remain the same…

I am angry.  And I don’t want to be.  But the efforts I put forth to make your death matter have failed.  And I’ve seen first-hand other families go through what we went through.  Except, in a way, we were lucky.  We were lucky that our ordeal “only” lasted 24 hours.  We were lucky that you were found, even though we will never know what happened to you. 

We weren’t lucky that you died, but we were very, very lucky that we had you in our lives for the time that we did.     

I love you, Dad, always and forever,


Leslie


Tuesday, August 1, 2017

Book Review: “It’s Not Yet Dark”*


“I was once invisible.  I moved among you, invisible in my disguise. Now I am difference made manifest” (p. 2).

It’s not often that you start a book and finish it the same weekend.  It’s also not often that you find a book that makes you laugh, cry, think, question, and wonder, all at the same time. 

Once I started reading “It’s Not Yet Dark,” I couldn’t put it down.  I didn’t want it to end, even though we all know what the ultimate end to the story will be.   

In 2008, Simon Fitzmaurice was diagnosed with Lou Gehrig’s Disease (ALS).  He was given three to four years to live.  That was nine years ago.  In that time, he has lost the ability to use his arms and legs.  He can no longer breathe on his own and relies on mechanical ventilation – a lifesaving technology that he almost wasn’t allowed to have because of his diagnosis. 

But he has also gone from having two children to having five.  He has continued his career as a film director.  And he has written this book.   

Simon Fitzmaurice wrote “It’s Not Yet Dark” by using eye-gaze technology.  I can’t even imagine the time and effort that went into it, but the result is truly amazing.  It’s written from the heart.  It’s a labor of love. 

It’s a feat.  Because the book is rich, lyrical, honest, and poignant.  The author faces his mortality head on because it is his reality.  And it really is all our reality, but for some it is more real than for others.

It is clear that while the author’s body has broken down, his mind has gotten sharper.  I can’t explain it, but the way the story is pieced together, it’s impossible to put it down.  It’s written with an honesty and a clarity that many people never develop. 

But the feeling I got from the book, my evaluation of it, isn’t coming from the fact that the author is fighting an incurable, degenerative disease.  It’s because the writing is that good.  It is one of the best books I have read in a long time. 

“It’s Not Yet Dark” will be available for purchase on August 1, 2017.  It can be purchased on Amazon

There is also a documentary of the same name, which you can learn more about by visiting: https://www.itsnotyetdark.com/.  I really hope that I get a chance to see the film.   

This review isn’t doing this book justice because I just can’t say enough about it, and my best advice is for you to go ahead and read it yourself.      

Do me a favor.  Do yourself a favor.  Even if you have only the time in one weekend, read this book.   

“But that was before.  This is after.  Never before had I felt that split, but now a fault line has opened between our past and our present, and there is no going back.  ” (p. 2).

* I received a free copy of this book from the publisher.  However, the review presented here is solely based on my personal opinion of the book. 

Monday, July 3, 2017

I Do Have Lupus And RA After All…

16 days after my appointment took place, the new rheumatologist that I saw called me with my test results.  Keep in mind that these results were available on the patient portal, which I was given access to immediately after my appointment.  So in reality, these results were ready between one and five days after my appointment took place.  They were results that I had already seen. 

Results that showed the following:

-         Elevated ALT
-         Elevated AST
-         Elevated ESR
-         Elevated Hematocrit
-         Elevated Hemoglobin
-         Elevated Potassium
-         Elevated Protein
-         Elevated Sjogren SSA Antibody
-         Elevated Vitamin D
-         Decreased Lymphocytes

But that’s all totally normal, right?  She also ran tests for multiple myeloma.  She didn’t even tell me she was doing that.  Thank you, Dr. Google.  If that was really the case – if I had cancer that had gone untreated for nine years – I’d probably be dead.    

And what she didn’t test for was also telling. 

No ANA.  No Rheumatoid Factor.  Confirmatory diagnostic tests that should have been run, especially since in person, she didn’t believe that I have lupus and RA.   

Why it took her 16 – yes 16, not seven, not 10, not 12 – days to contact me, especially when I had left several messages for her, is beyond me. 

Of course, when I talked to her on the phone, she had changed her tune a bit.  She told me on the phone that my diseases are stable.  And I really wanted to say, “Oh!  You mean the diseases you told me that I may or may not have?”  But I didn’t.  Inside I seethed.  But over the phone, I tried to remain calm.  With everything she said, I replied with something like “okay” or “uh huh”, the way you respond to someone who you’re supposed to respect but don’t. 

The first time she called me – Day 16 – was on a workday at 10:15 a.m. on my cellphone, so I missed the call since I can’t have my cellphone out at work.  She had my work number and I had told her she could call it, but she didn’t.  It’s like, yes, I’m sick, but I work.  Sorry if that’s so hard to believe.  We finally talked on Day 17.  But I wasn’t counting or anything.  I’m immortal.  I’ve got nothing but time.

She also gave me numbers from the labs that were wrong – I had seen them all already and had pretty much memorized them.  And someone kept coming into her office while we were on the phone and interrupting her, so she kept telling me to “hold on.” 

Not only did she have no regard for me as a patient, but she also had no regard for me as a person. 

I knew that nothing she would say would come as a surprise.  And nothing she could say or do at this point could hurt more than our first encounter.  And nothing she could say or do could repair the damage that was done during that first encounter.

To the point where that first encounter will likely be the only encounter.  It was the first and likely the last.  I wish I could say it never was.  But it’s not that easy to shake off.  To be told after nine years that you don’t have the diseases you think  you have, and that you’ve been misdiagnosed and treated incorrectly, when the person telling you this has no evidence to base that determination around other than some mysterious beef with your old rheumatologist, it’s truly the stuff of nightmares.  It’s the kind of thing that I know happens to others, but I didn’t really think would ever happen to me.  But clearly I’m not immune.  And clearly after all these years of craziness, I can still be surprised…in a bad way...  

I entered that office with hope and I left with desperation.  Doctors have power, and this particular doctor used that power for evil rather than for good.  I’ll never really know why, but I’m 99% certain that she is not the doctor for me.    

I’ve already made an appointment with a different doctor at a different practice.  I made that appointment on Thursday and received the paperwork in the mail on Saturday.  The doctor’s office that I went to claimed to have sent me their paperwork twice and I never got it.  I’m noticing a difference already. 

I understand that everyone wants to be the hero in someone’s life.  But after nine years of living with lupus and RA, I am never going to be that person for this doctor, or any doctor.  I need management, not diagnosis.  I need compassion, not reaction.  I’m not a science experiment.  I’ve been there and I’ve done that. 

This is my life.  And lupus and RA are an excepted and recognized part of that life. 

I knew in my head and my heart that this doctor was wrong.  She made pronouncements without evidence or reason.  And when it came down to it, she wouldn’t even admit that she made a mistake.  All she could do is tell me what I already knew.  That my diseases are much more stable than they were nine years ago.  That they are in a different state, and yet they are same.

I have lupus and RA. 

July of 2017 is no different than April of 2008. 

Same story, different day, different month, different year. 

And I can breathe again. 

You can’t throw the baby out with the bathwater, not when the situation doesn’t call for that.    

This chronic illness thing is not a static journey but an active one.  No matter how much we hurt or how fatigued we are, we go on.  And we deal with so much crap along the way.  We let others inflict hurt upon us in the name of health.  We let doctors literally “play” doctor.  We find people we can trust, and sometimes we find people that we cannot.    

I knew I didn’t need Arthritis Foundation brochures about lupus and RA.  I could have written those brochures.  And if you think about it, I spent eight years in graduate school and I’ve been sick for nine years, so that’s 17 years worth of experience.  I think that might just trump medical school.  And if that doesn’t, well, it’s my body.  I think I am more of the expert in that than anyone. 

If anyone’s keeping score, I won this round.  But I’m back to the drawing board as far as rheumatologists are concerned.  I can only hope that the next appointment with the next new doctor goes better than the last one did. 

(I also had an issue with my insurance and needed a different prescription for one of my meds.  Neither she nor her office could seem to be bothered with that.  Somehow, my old rheumatologist took care of it.)

And in case you’re are wondering or missed it, I had an incredibly successful nine year relationship with my last rheumatologist – you can read about it in the post, “A Thank You Note To My Rheumatologist”.  Losing him is literally the only reason I would put myself through the hell of finding a new doctor.     


Bye, bye brochures!  Enjoy your time in the landfill.

“Nobody said it was easy,
No one ever said it would be this hard.”


-         “The Scientist,” Coldplay