Friday, November 21, 2014

Dear Dad (#1)

I’ve decided to write a series of letters to my dad and felt like I wanted to share them here as I hope it will bring clarity, not only for me, but also for those of you who have followed me on this journey. 

Dear Dad,

It has been three months since you’ve been gone, and I’d like to say that it has gotten easier, but it hasn’t.  I miss you more with every passing day.  And while I’m excited to be going home to Michigan for Thanksgiving, it won’t be the same without you.  And I will acutely feel your absence and the fact that, that is never going to change.

I’ve decided to write some letters to you and post them on my blog when I feel like I need to share what’s going on in my life.

You’d be amazed by all of the kindness and compassion that has been shown to us over the last few months, even from strangers, as those that knew you try to grapple with your loss and what it means for our lives going forward. 

I’ve been working on a project for you, and I think you’d be really proud.  I’m putting the letter writing skills you taught me to good use.  That’s all I can say about it right now, but I do hope to share more about it when appropriate. 

I try to hide my pain, but a world without you in it doesn’t seem right.  I know we didn’t talk on the phone a lot, but now that you’re gone, I find myself wanting to talk to you more and more, and wish I had done a better job of cultivating that part of our relationship while you were alive.    

I was in Boston this weekend for a blogging thing, and I cried the hardest I have for you in a long time.  It took me by surprise.  I’m not sure what brought it on, other than the fact that the project I’m working on has forced me to relive the details of your death over and over again.  Some days are okay, and some days are harder. 

Mom made Molly and I pick out something from a jewelry box I never even knew you had.  I picked a cool ring that is square and very geometric.  I wear it every day, and in a weird way, it makes me feel more connected to you.

I’ve gotten so many compliments on the ring, and I proudly tell people that it was my dad’s.  I never realized how small your fingers were because the ring actually fits me fine.  I don’t want to be a downer, but it’s hard not to tell people that you died and that’s why I have the ring.  I’d much, much, much rather have you here than have one of your rings, but every time I look at it, it’s a reminder of all of the good you brought to my life, and the fact that you will always be with me. 

There’s a lot I haven’t said, but it’s important that the world know what happened to you.  It’s important that you know that I am fighting for you, and that I won’t stop fighting for you until things change.  I don’t want another family to go through what we went through.  And I hope I can see this through.    

I love you daddy,

Leslie

Wednesday, November 19, 2014

Adventures In Boston And At The American College Of Rheumatology (ACR) Conference 2014*

My original plan was to write two separate posts about my weekend in Boston, one about the Joint Decisions Empowerment Summit, and the other about my experience at The American College of Rheumatology (ACR) conference.  But I decided to combine these two things into one long post so I didn’t have one that was profoundly positive and one that was profoundly negative.

I arrived in Boston on Friday night.  I had a few minutes to settle in before attending a welcome dinner for members of the Janssen Biotech and CreakyJoints teams, and the patient bloggers.  It was amazing to see the friendly faces of those I have met in person before, including Hurt Blogger Britt, Inflamed Angela, Cathy Kramer of The Life and Adventures of Catepoo, and Spoonless Mama Rachelle; and new faces but definitely not strangers Carla of Carla’s Corner, Wren of Rheumablog, RA Guy, All Flared Up Amanda, Titanium Triathlete Dina Neils, and Mariah Leach of From This Point. Forward.

On Saturday, most of what we did was share our patient stories.  While we all know each other via our blogs, being together in person and actually talking was incredibly powerful and uplifting.  I was so lucky to be in the company of so many amazing, amazing people.  We also got to hear the amazing story of Tina Wesson, best known for winning the second season of Survivor, who also has RA. 

It’s events like these that uplift me, inspire me, and inject positivity, enthusiasm, and the sense of family and community in living life with RA. 

Sunday, was more business than personal.  We gave a lot of feedback about the Joint Decisions webinars, which was the collaborative effort of CreakyJoints and Janssen.  We also had the opportunity on Sunday to go to ACR.    

I have to admit that when I was told I would have the opportunity to go to ACR, I was more than a little excited.  Call me a dork, but I have been wanting to attend since I first got sick.

I had high hopes for what would be in store.

I only had a few hours before my flight, but I was grateful to have the opportunity to check it out and see what it was all about. 

I really only made it through the area where the pharmaceutical companies are set up.  To say that they each have their own booth is an understatement.  They have these visually and technologically advanced spaces that can only be described as show pieces.  Most booths had plush carpet and elaborate little cafes and sitting areas inside. 

But that’s where the glitz and glamour ended.

I happened to wear my “I Am The Face of Arthritis” T-shirt.  I love this shirt and would wear it all the time if I could. 

But within  two minutes of entering the convention center, I felt like something was up.  I was being stared at and given dirty looks.  I asked somebody I was with if I was crazy to feel like people were staring at me, and she agreed that it was definitely happening, and often not very subtly, I might add. 

I may have RA, but I am not blind.  Hello all you people, I see you staring at me. 

I was very taken aback by this response.  Why are you in rheumatology if you can’t handle the realities of this disease?  Maybe most of the people I encountered were researchers with little patient contact, at least I hope that’s the case.  Because otherwise, I really don’t understand. 

And unfortunately, the odd behavior didn’t stop at dirty looks. 

The minute we mentioned we were patients and bloggers, people didn’t know what to do.  One woman turned around and walked away without saying a word.  Some people wanted to know what a blogger was.  Not smart because if you knew what a blogger was, you would know that I would write about and share your rudeness with the world. 

I understand that in the capacity the pharma companies were in at ACR, they are concerned with being accused of trying to sell drugs directly to patients, which is a big no no.  But, it doesn’t mean that they have to be rude and ignore us.  You can welcome us to ACR. 

I’m sorry people, but let’s be real.  Us patients help you pay your bills and keep your families fed.  You might want to be nice to us.

First and foremost, ACR is an academic conference.  That was made abundantly clear.   But if “patient” truly is a dirty word at ACR, than the priority of who is being served needs to change. 

To be fair, one booth was very friendly to us.

Here are a few selective live tweets from ACR:





And the members of Janssen Biotech who were present and  hosted the Joint Decisions Empowerment Summit in conjunction with CreakyJoints, were amazing.  They treated us like celebrities, really listened to our experiences and feedback, and pulled out all the stops for us while we were in Boston. 

In finding out that ACR is pretty not patient-friendly, made the rest of my Boston trip so much better because of how amazing it was. 

I’ll be the first to admit that I only got a small glimpse of what ACR is all about, but what little experience I did have, really didn’t meet my expectations. 

I’m sure that in writing this post, I will probably end up on the ACR blacklist and will never have the opportunity to attend again.

And of course, illness didn’t stop there.  I got to the airport to catch a plane to New York, and was told by TSA that I was moving too slow.  Really?  Do you see what my shirt says?  Learn to read and then tell me I move to slow.  When I got to the other side of the security checkpoint, I feverishly grabbed my belongings, not wanting to be rebuked a second time for my speed or lack thereof.  And the security guard on the other side of the checkpoint told me to take my time to make sure I didn’t forget anything.  Come on government employees, pick a side.  I’m considering looking into TSA-pre for the simple fact that I won’t have to go through the whole thing with taking my coat and shoes off, taking my laptop and toiletries out of my bag, and then having to put it all back together again.   

Overall, I will say that I suspect that some of us bloggers don’t get out much, considering the antics that occur when we’re together, including finding a million and one ways to screw with the cardboard cutout of Matt Iseman. 

Aside from ACR and TSA – see, nothing good can come of abbreviated organization names – I truly had the most amazing time with my fellow RA bloggers.  Old friendships were strengthened and new friendships were forged.  And I’m still standing, despite the dirty looks and slow comments. 

I know what you're thinking.  Way to keep it classy, Leslie.  But I am keeping it real.  This goes out to lupus, RA, ACR, anyone that's ever doubted me because of my illnesses, and whoever keeps calling my cellphone and asking for my dead dad.  


* Janssen Biotech paid for my travel arrangements to Boston for the Joint Decisions Empowerment Summit and my attendance at ACR,  however, the views and opinions expressed here are my own.  

Wednesday, November 12, 2014

On Becoming A Professional Patient

Lately something I am really struggling with is balancing blog commitments with my work and school commitments.

So many amazing opportunities have come my way in the last year and a half, as far as my blog is concerned, but it is hard to keep that momentum going; I’ve had the opportunity to attend, most recently, Stanford Medicine X, the ePatient Connections conference, and a Creaky Joints meeting.  This weekend I will be attending a meet-up at the American College of Rheumatology (ACR) annual meeting. 

Now that I’m working part-time – four days a week – and going to school one day a week – I am exhausted all the time.  This means I do not have the time or energy to work out, or do much else of anything.  I’m lucky on nights where I don’t fall asleep on the couch before 9:30 p.m.

I know many people with chronic illnesses that are self-employed.  And I certainly get the flexibility that it provides.  However, it also means that you are responsible for finding and paying for health insurance, it may mean that you do not have a steady or consistent income, and you may not have other perks that a more traditional job might provide. 

On the other hand, self-employment allows you to take breaks throughout the day, makes it so that you do not have to call in sick every time you don’t feel good, and allows you to accommodate any other needs specific to your health condition. 

So what is the best way to deal with this?

By May, I will have two Master’s degrees and a PhD.  The thought of not working after all of that seems silly. 

But a 9-5 job is exhausting. 

Having a full-time, traditional job also means that I would have to find an employer flexible enough to allow me to take time off to attend conferences and other events, or it means having to give up those opportunities.  It also means being straightforward and realistic about my health issues and how they could potentially impact a traditional job.    

Obviously, I’m aware of how lucky I am to have this problem. 

Trust me, I know. 

My blog has sustained me these last six years, so it’s hard to imagine having to walk away just as the momentum has picked up. 

So how do you balance “real life” and blog life?  Do you think it’s possible to have a professional job as a patient/advocate and a job writing blog posts and attending conferences as a patient/advocate? 

In some ways, because of where my professional life is going, these two things are not really separate entities anymore.  But when I face the realities of what full-time work might mean, if that is sustainable as my illnesses ebb and flow, I also face the reality that I can only do so much. 

When it comes to purely social events, I’ve become really good at knowing what my limits are.  But when it comes to school, work, and blog stuff, I haven’t found that sweet spot yet, or the ability to say no to things.  As opportunities come my way, I want to embrace all of them. 

So what gives? 


How do I keep this part of my life that I’ve built from the ground up in terms of blogging, and the side of my life that I’ve worked so hard for?  

Thursday, October 23, 2014

“Words and Pictures”: What It Means To Love And Be In Love When You Have RA


I recently rented and watched “Words and Pictures”.

For those who don’t know, “Words and Pictures” is a film starring Juliette Binoche and Clive Owen.  In the film, Juliette Binoche’s character has RA.

According to the Arthritis Foundation, this may be the first movie ever to feature a main character that has RA (http://www.arthritistoday.org/what-you-can-do/everyday-solutions/relationships/words-and-pictures-movie.php).

I’ve never seen a portrayal of RA like this before.  It was so accurate, almost too real.

There were outward manifestations of RA, such as the use of a cane and crutches, and wrist guards.

There were also the more inward manifestations of RA.  Watching Juliette Binoche’s character fight internal frustration and what she was not able to do, or having to call her sister to come help her undress, really brought RA home. 

Juliette Binoche’s character is shown having difficulty undoing buttons.  At one point, she takes out a mallet to open a prescription bottle, sending pills seemingly everywhere. 

Haven’t most of us with RA been there before?  I remember one time, I was ready to throw a jar of pasta sauce at the wall because I couldn’t get the lid off of it.   

At times, I found it difficult to watch Juliette Binoche’s character struggle with some of the same things I struggle with.  It reinforces the idea about what healthy people take for granted in their everyday lives, and what many of us with RA lament that we can no longer do, and long to be able to do again. 

In the movie, though, Binoche’s character, an artist, is forced to adapt her tools and instruments so that she can continue to paint, despite not being able to hold a paintbrush with her hand.

This adaptation is pretty amazing to watch. 

In the movie, it is made abundantly clear that Jack Marcus (Clive Owen) loves Dina DelSanto (Juliette Binoche), RA and all.  They are both slaves to their art, and they are both rough around the edges.  Both of these characters are deeply flawed, and at times a bit frustrating to watch.

There was a point in the movie that I found particularly poignant.  The first time that the two characters are becoming intimate, Juliette Binoche tells Clive Owen he has to be careful of her body.

When Clive Owen told Juliette Binoche, “You just have to tell me what hurts, where, and how much,” I cried.  I literally shed tears. 

To me, that was the biggest lesson in the movie.  Yes, it portrayed a main character with RA for possibly the first time ever. 

But it also underscored that you can love and be loved despite having a chronic and debilitating illness like RA. 

The San Francisco Gate called the movie “odd and thought-provoking,” and it truly is both of those things (http://www.sfgate.com/movies/article/Words-and-Pictures-review-Odd-and-5498484.php).

It’s also kind of amazing to see someone like me in film.  That so rarely happens, and the power of that shouldn’t be underestimated. 

I don’t think this movie is for everyone.  The story felt a little clumsy at times.  And I watched it alone, which was good.  I don’t think my boyfriend would have liked it.  And I’m not sure that someone who doesn’t have RA can really understand or comprehend or appreciate the significance of the illness, despite the fact that this film features a  main character suffers from it. 

Wednesday, October 15, 2014

Debts I Can Never Repay

The last two months have been some of the most difficult of my life.

Learning to live to without someone so close and important to you is truly unbearable. But there were bright spots of light in the darkness, and I am so grateful for that.

As I begin to come out of the fog of grief and sorrow, and re-orient myself to the real world, I realize that there are people I formally need to thank for their help and support.

First of all, the many groups that have come to feel like family. I am grateful to my CreakyJoints family, my Health Union family, my Hospital for Special Surgery family, my Medicine X family, my Sarah Lawrence Health Advocacy family, and my virtual/blogger family.

I have to thank my wonderful friend “A” for providing invaluable advice for dealing with law enforcement, and for literally driving across the State of Michigan to attend my dad’s funeral.

Three weeks after my dad died, “A’s” dad died. I was in California for Medicine X, so I was unable to attend her dad’s funeral.

While I know “A” harbors no anger at this, it is something that I have difficulty reconciling.

In my mind’s eye, I always imagined that when one of her parents died, I would be there for her, in person, no matter where I was living or what I was doing at the time.

Obviously, I never anticipated that she and I would lose our dads three weeks apart, when we were both barely thirty years old.

My friend D, who is always there for me, was incredibly supportive, especially considering she was preparing for a cross-country move. Thanks for letting me cry in public as I recounted the many events that transpired before, during, and after this ordeal.

To my friends “E” and “R”, who were there and available through it all, I am so appreciative.

I also appreciate “R” for sharing her son with us. His happiness and innocence provided some much needed light.

For “J”, who drove all the way from Ann Arbor twice, your presence was deeply felt and much needed.

For “C”, who, after all that you’ve been through, has always been there with me. I am sad that I had to join this club, but I am forever grateful for your strength and comfort.

If there is one thing I have learned from this experience, it is that the people you surround yourself with are so incredibly important.

I am kind of impressed with myself that through the years, I have managed to collect so many amazing friends along the way, who truly proved how amazing they are in helping me through this difficult and unexpected event in my life.

It’s not just that they were there when I needed them, but they were there to listen, and to cry along with me.

My parents have always embraced my friends, and I know that many of them had come to love my dad, even if they only met him in person on a few occasions.

To my boyfriend, I couldn’t have made it through this experience without him.

All of my other family and friends that called, wrote, sent text messages and emails, or were physically present in some way, thank you.

To those that I have left out or forgotten, please know that in small and big ways, I am grateful for the amazing love and support that has surrounded me.

When I got sick, I felt like I became a taker and not a giver. I felt like I was taking more from my friends than I was giving back to them. And I guess there are many times in our lives when this is the case, and we take more than we can give. I hope that someday, I will be able to adequately give back to the people I have mentioned here, who have given so much of themselves for me.

As I mark two months since my dad died, I continue to be hit with the tremendous loss and what it means for me life, but I also am reminded, in big and small ways, about how much (and how many) people I still have.

Monday, September 29, 2014

Insurance Company Decides They Will No Longer Cover Compounded Medications

Today I called my compounding pharmacy to refill my prescription for Quinacrine. 

I received a call back from my pharmacy saying that the medication is no longer covered by my insurance, which means paying $95 out-of-pocket per month instead of $25 per month.

Of course, this is not the news I wanted to hear, nor was I expecting to hear.

So I called my insurance company, and after talking to three different people, I was told that they have decided to no longer cover any compounded medications.

I explained that I have lupus and RA, and that this medication is working for me, so would they provide an exception?  Of course, the answer was no.

It’s really crazy though that they covered it last month and are no longer covering it this month. 

Insurance companies make these willy nilly decisions and they don’t bother to think about who they are impacting and what the consequences of such decisions are.

At this point, because the medication is working for me, it really doesn’t make sense to go off of it and try something else, even if it would mean a more manageable cost per month. 

$95 a month is going to be hard to swing, along with the other medications I take costing $70 per month, and now that I am seeing an out-of-network therapist that is charging me $125 a week. 

Holy credit card debt here I come.  I guess that’s the price you pay for some modicum of health. 

I guess I’ve always known that being on a medication that is no longer commercially available in the United States, I run the risk of just such a thing happening.  But I don’t think I ever imagined that the insurance company would make a blanket rule refusing to cover any compounded medications whatsoever. 

And it’s always beyond frustrating to talk to insurance companies because they just don’t get it.  They aren’t doctors and they aren’t patients.  They’re just cogs in the wheel of the medical industrial complex machine.

They are talking heads.  They are mouth-pieces.  They are simply uncaring and unsympathetic.  And they put those of us who are chronically ill and in need of meds to function in a really crappy position. 

I’m not there yet, but some people have to decide between eating or taking their meds.  And that just shouldn’t be.

I hate it when I am forced to make decisions about my healthcare based on the dictates of my insurance company and nothing else. 

I know that they are customer service people, but I really resent being asked the question at the end of the phone conversation today: “Is there anything else I can help you with today?”

First of all, you didn’t help me.  You just kind of ruined my life. 

Thursday, September 11, 2014

Medicine X 2014: It’s Okay Not To Be Okay

I had the honor of attending the Stanford Medicine X conference in California this past week. 

Why that title – “It’s Okay Not To Be Okay”?  Because that is truly the most important thing I took away from my Medicine X experience.

Returning from Michigan to New York after my Dad died, I had a much smaller support system than I had in Michigan.  And initially, I felt like I was going to California in a fog.

I knew I had to get on a plane to go to a conference, but beyond that, my mind was in a million other places, not least of which was making the decision to still attend Medicine X, after my Dad’s death just three weeks earlier.

So I went to this conference, and I was not okay, not by any stretch of the imagination.

But it turns out that this was probably one of the best things I could have done for myself, not just in general, but especially during this difficult time. 

Because Medicine X is a judgment free soon.  In terms of the patients at the conference, we all have our things – whether it’s lupus or RA, wearing a prosthetic, or having a rare disease that no one, not even doctors, have ever heard of.

It was the first time since being back from Michigan where I didn’t feel like I had to lie and tell people I was okay when I really wasn’t. 

Medicine X is an environment that boosts you up, makes you feel like you are not alone.   

I was truly inspired by the people I met there.  In fact, I am really at a loss for words to describe the transformative experience that was Medicine X. 

And it was hard coming back to reality.  To a world with no wellness rooms, where people can’t just look at you and know you need something, and don’t look down on you because of it.

Most of the people that I hung out with at Medicine X were younger than me, and I was amazed to the degree that they have their shit together.  When I was their age, I was newly diagnosed, and questioning every aspect of my life – and at times, whether or not I wanted to live it.

Those were dark times for me.  And maybe my life would have been much different had I discovered Medicine X then.  But it has certainly changed my life now, and completely for the better. 

There were definitely some doctors that were more evolved than others.  But honestly, while it was nice to be able to engage with medical professionals and pharma, it was the patient interactions that really meant the most to me.

When I had a meltdown during the pre-conference day, before I knew it, people were huddled around me, seeing what I needed and what they could do.  And that was enough.  To be surrounded by people I had literally just met, really meant the world to me.

And my mom and boyfriend both commented that I haven’t sounded this happy in a long time.

I was worried that with life having other plans, I wouldn’t be that into the conference, but I really was.  And I know that my Dad would have been proud that I went, despite everything that has happened in the last month. 

And ultimately, I’m glad I went.  I made new friends.  Not just superficial see-you-when-I-see-you friendships, but I barely-know-you-and-I-still-bore-my soul. 

Most importantly, I met people like me.  I was able to be myself, warts and all, and I learned how connected our patient stories are, whether we live across the street or across the world. 

There are many people I have to thank for making this experience one of the most influential in my life, to date.  But I’m only going to name one of you, so I don’t inadvertently forget anyone. 

I have to thank my roommate, and now kindred spirit, Emily Bradley (A.K.A. ChronicCurve).  You said that Medicine X places you with a specific person for a reason, and I believe that 100%.  I couldn’t have had this Medicine X experience without you and am truly grateful to know you (you’re kind of like the undergraduate version of me).     

I received a very generous scholarship in order to attend Medicine X as an ePatient Delegate.  So of course, I have to thank the organizer of Medicine X, Larry Chu, the ePatient Advisory Board, and anyone else behind the scenes who made it possible for me attend. 

If you want to gain more insight into my Medicine X experience, hop over and take a look at my Twitter feed (@LeslieRott). 

I can’t say enough about this experience.  It’s really hard to put into words.  But I will say, and hope I can say, that I’ll see you next year Medicine X, and I’ll be prepared to bring my A game. 

The title of this post was inspired by Britt Johnson (@HurtBlogger) and Joe Riffe (@ProstheticMedic), and the song “Who You Are”, by Jessie J:

“[…] Don't lose who you are in the blur of the stars!
Seeing is deceiving, dreaming is believing,
It's okay not to be okay...
Sometimes it's hard to follow your heart.
Tears don't mean you're losing, everybody's bruising,
Just be true to who you are! […]”

Monday, September 1, 2014

My New “New Normal”

When I first got sick, I had to re-evaluate my life.  I had to adjust what my expectations of normal were.  And now, after the tragic and untimely passing of my Dad, I’m finding that I once again have to re-evaluate my life and my priorities, and try to return to “normal” functioning, whatever that actually means at this point, I’m still trying to figure out.

There are already things that have changed…

Right now I am eating to live, not living to eat.  Sometimes food tastes good and sometimes, it tastes like nothing.   

Days that I get up, get out of bed, put on real clothes and do more than stare at the wall are a good day.

I know my dad wouldn’t have wanted my life to stop because his did, but it doesn't feel right.  It doesn’t feel right trying to move on from this.  It really doesn’t.    

Even though I know he wouldn’t have wanted it this way, it feels macabre to do the things that my dad no longer can.

And there are things we would never have thought anything of before, that become meaningful now…
https://ssl.gstatic.com/ui/v1/icons/mail/images/cleardot.gif
We will never again think of a cellphone call that goes unanswered as no big deal.

We will never look at a rain storm and not be filled with dread.

We will worry that something bad has happened when someone arrives home later than expected. 

Someone recently said they hoped my illnesses were giving me a break, but honestly, I would rather that my physical pain and my emotional pain match, rather than being totally engulfed by emotional pain when the physical presses me to move forward, to move on.

Right now I feel like my brain is mush, and like I’m walking at a snails pace. 

Many of you reading this right now are probably thinking that I need therapy.  And I do, I know I do.  But right now I need to sit with all that has happened and deal with it in my own time before I bring in a stranger to help me work through it.

When I got my diagnoses, I walked out of the doctor’s appointment feeling like the world had irrevocably changed, but I was the only one to notice it.  In this case, the world has irrevocably changed, but I’m not the only one to have that feeling.  Besides my family, it has become apparent over the last several weeks that my Dad was loved by many, many people, and he made lasting impact on those that had the pleasure of knowing him. 

Two weeks ago, I could barely walk, barely breathe, was nauseous and dizzy.  I could barely keep it together.  This week, I am being forced back into somewhat of a routine, trying to prepare myself for all that I had originally planned to take place in the coming weeks. 

Maybe I’ll get back into the swing of things by doing new things.  I’ll be attending the Stanford MedX Conference from September 3, 2014, to September 8, 2014, and I’ll be attending the ePatient Connections Conference September 15 and 16, 2014.

My family has urged me to fulfill these commitments despite everything that has happened.  They tell me that my Dad would have wanted me to forge ahead, despite his tragic loss. 

That’s really the only thing that’s keeping me moving forward right now – that my Dad would have wanted it that way.     

Thursday, August 28, 2014

Lupus, RA, And The ALS Ice Bucket Challenge

You know me.  When it comes to gimmicky advocacy efforts, I tend to be a curmudgeon. 

In the past, my major beef has been with the “Pinkification” efforts for breast cancer awareness that take place every October.

I’ve always felt that it is really dangerous when any one condition dominates the consciousness of the American public.   

To be honest, I’ve been really grateful that given what has been going on in my personal life, people have been considerate enough and no one has nominated me to do the ALS Ice Bucket Challenge, because I won’t do it, at least not right now. 

At first, I thought that the purpose of the Ice Bucket Challenge was to numb people in a way that mimics some of the symptoms of ALS.  But that doesn’t seem to be the case. 

I actually would understand it a little bit better if that was the goal of the challenge.  But it’s not.  The goal is to raise money and raise awareness.

On the money side, the Ice Bucket Challenge has prevailed.

In the awareness department, I’m not so sure.

Pouring a bucket of ice water over your head makes you uncomfortable for a few minutes, at most, but it doesn’t raise awareness about what it’s like to live with this devastating disease.   

While all measure of celebrities, and even the President of the United States, have videoed themselves taking part in the Ice Bucket Challenge, few of these videos provide any education whatsoever about what ALS is and how it impacts the patients who are diagnosed with the disease, and their families.  

It isn’t awareness, if, when you ask probably 99% of the people who have done the Ice Bucket Challenge what ALS is, they probably can’t tell you much more than the fact that it’s a fatal disease, if they can tell you that much.


And I know that many people with RA involved in social media have questioned whether taking part in the challenge could have an adverse affect on their health and their joints. 

As it turns out, a recent e-mail in my inbox from the Arthritis Foundation was about Healing Hands For Arthritis.  On September 17, 2014, Massage Envy Spa will donate $10 from every massage and facial, and 10% of sales of select skincare products to the Arthritis Foundation (http://www.massageenvy.com/healing-hands-for-arthritis.aspx).

I some ways, I understand this a bit more than the Ice Bucket Challenge because many people with arthritis benefit from massage therapy.

However, if there is no educational component about arthritis provided along side the donations on September 17, then this too fails to really raise awareness.

I guess we have to ask ourselves what the goal of any advocacy and awareness campaign is.  Is it simply to raise funds, even when there isn’t a clear direction to where all of those funds will go?  Or is the goal to really raise awareness, not just imprint the name of a disease on the public consciousness? 

As of yesterday, since July 29, 2014, $94.3 million have been raised for ALS.  Last year, during the same period of time, only $2.4 million was raised (http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-082714.html).

So maybe for those of us who are skeptical, the joke’s on us. 

It’s great to give to charity.  But it’s not really a sustainable effort if people are giving blindly, and/or due to peer pressure. 

ALS is a horrible disease, and research efforts into finding a cure for this disease are extremely important and necessary.  But there’s also the fact that we need to share the wealth. 

I don’t mean that to sound selfish.  But there are many diseases out there, including Lupus and RA, that are really misunderstood by the general public, and even so by some doctors and some patients.  

So it’s great that ALS has finally had its 15 minutes (and $94.3 million worth) of fame. 

But before you dump a bucket of icy water over your head in the name of ALS, or any other disease for that matter, maybe you should think about it, rather than just doing it.