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.

Doctors are even warning against the challenge (http://www.forbes.com/sites/jvchamary/2014/08/25/ice-bucket-challenge/ and http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11294023). 

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.

Things We Lost In The Flood

This post isn’t specifically about chronic illness, but it is about life and death, and what the really important things in life are.

On Monday (August 11^th, my 29^th birthday) there was a terrible storm and terrible flooding in Michigan.  Nobody had seen anything like it before.  Basements in all of the communities surrounding Detroit were flooded to varying degrees. 

While my family’s basement was flooded and nearly everything had to be thrown away, we lost something much more important and irreplaceable. 

My Dad was coming home from work, about 45 minutes away from home.  He called my Mom to tell her that he was driving to higher ground to wait out the storm.  He never came home and the police found him dead in his car on Tuesday.  He had found higher ground, was away from the water, and we don’t really know what happened other than the fact that he is gone.

I would have understood a bit more if he had been caught in the water and was overcome by it.  But the fact that he died, alone in the car, makes it so much worse.

My Dad was missing for almost 24 hours, but I can’t imagine the anguish it would have caused if he had been missing for much longer, or he would not have been found at all. 

Although we don’t truly know what happened, I don’t know what would have happened if he had just vanished.

I always thought that nothing worse could happen to me when I was diagnosed with multiple chronic illnesses at the age of 22, but I was so wrong.  This is so much worse.  I have never felt more pain – and the kind of pain – that I feel right now. 

It’s hard for me to sit here and write, but I feel like I have to.  Life is crazy and finite and totally unexplainable. 

These are the words that my sister and I wrote and had the Rabbi read at my Dad’s funeral.  To me, they will never be adequate in describing what our Dad meant to us, but for now, in this time of grieving and uncertainty, they will have to suffice:

What do you say when a life is cut short?  What do you say when you lose one of the most important people in your life?  There truly are no words to express our deep sadness right now.  Our dad was a family man in every sense of the word.  He put his family before anything else and for that we will always be truly grateful.  Leslie, myself, and our whole family cannot imagine life without his contagious smile and his humor, which we didn’t always find funny.  He laughed at the stupidest things with Aunt Nancy and his red face always made it look like he would burst at the seams.  This past week I was able to take a selfie with him and my Bubbie, and he thought it was the coolest thing ever.  That is what we are trying to remember.  While we are trying to think of all of the good memories, we cannot comprehend all the events he will miss in the future.  This senseless tragedy has rocked us to the core.  We will no longer have our partner-in-crime, our math tutor, or our almost genius father (as Bubbie likes to think).  Our dad would want to be remembered for his smile, his laughter, the times he viewed the cup half full, and for the mark he left on this world.  He would also be touched by the outpouring of love and support from all of you.  We intend to carry on his legacy to the best of our ability and while grief has overcome us, we will soon celebrate his life and the everlasting pieces of him we have in our hearts.

My dad didn’t always like everyone, but it is clear that almost everyone who knew him liked him as is evidence by the fact that the funeral was standing room only.

My dad didn't need material possessions. His family was his number one priority.

I never saw my dad more upset except when his dad died in December.  This makes this situation even more unfair because he was still in mourning the death of his own father, and now we are mourning the loss of him.

Part of me wants to walk around in a shirt that says, “My Dad Died,” as if that explains everything.  I have always felt horrible about the death of my boyfriend’s mother from cancer five years ago, but I truly never imagined that I would lose a parent at this age. 

Humans are flawed beings.  When something happens, we pledge that we won’t make the same mistake again.  We promise to love more and let people know we love them, we promise we’ll call more, and talk more.  And then we don’t follow through because we think that life won’t throw us any more curveballs.

And this time, I am pledging not to make the same mistakes.  I will make sure that those I love know that I love them. 

I don’t know how life will ever be the same again.  Right now I’m trying to just do more than stare at the wall.

Some people say that you don’t get dealt anything in life that you can’t handle, but I don’t really think that’s true in regards to this situation.

I don’t believe in much right now; I don’t even know what I believe in right now. 

I always thought that I’d be about 60 years old before I had to say the Jewish mourning prayer, but I’m 29, and my sister is 19, and we have joined a club that we would rather not be a part of.

I understand why in ancient times people ripped their clothes and flogged themselves in times of crisis and despair. My life is in shambles right now and I don’t know how long it will take to pick up the pieces. 

One thing that has amazed me during this time is finding out so many young people have lost parents who, to me, seem so normal and well-adjusted, and I never would have imagined that they had been through something like this.

When I got sick, I had to find a new normal.  And now, for a very different reason, I have to find another new normal.   

I try to remind myself that I am not the only person this has ever happened to.

And I share all of this with you because this community has supported me so much in the past, and I am counting on you to be here for me during this most difficult time.

For people who would like more information, you can visit:

   

http://hebrewmemorial.org/Funeral-Shiva-Postings/ctl/Detail/mid/1817/xmid/2568

Neal Barry Rott, December 17, 1951 - August 12, 2014

Day one of our basement clean out.  But in the end, it's just stuff.

Day two of our basement clean out.  But in the end, it's just stuff.

 

My Poor, Nodule-Ridden Foot

I have never liked my feet.  Even before lupus and RA, my toes are genetically defunct.  They go every which way and are just gross. 

But recently, I've noticed a new development with my right foot.  First there was a nodule on my big toe, and now there is also a nodule on my little toe.  My foot literally hurts all the time, especially when I put weight on it (which is most of the time).

I am aware that nodules are a very common consequence of RA, but I never realized how debilitating they can actually be. 

It is pretty crazy.  I feel like the nodules get worse by the day, unless I am completely off my feet.  Then they seem to calm down and retreat a little bit.  But otherwise, they hurt something fierce.

I have to grit my teeth in pain, but I have to go on with my daily life because I don’t really have a choice. 

And the nodules also remind me of the nightmare that I've had many times that I wake up and my hands are totally deformed. 

RA can change by the day.  I go to sleep with the nodule looking one way and wake up with it looking differently.  I go to sleep with one nodule and wake up with two.  It's very distressing; I’m not going to lie.

My body is finally starting to show its wear on the outside.  But to the untrained eye, these nodules might not be noticeable.  That's why I point them out in the picture (see photo at the end of this post). 

To me, I noticed them fairly quickly and wondered if my eyes deceived me.  Maybe my feet have always looked like that, with strange bumps of bone forcing their way out.   

But my rheumatologist confirmed that I do in fact have two very angry nodules on my foot. 

I'm not crazy.  They are really there. 

And what this really means is that my illness is in active-disease mode.  Even though it seems that lupus may have the upper hand at the moment, clearly RA is there competing for prominence. 

And visible, painful nodules are a really great way for RA to declare itself to me. 

I thought that maybe I was lucky enough to escape some of the ravages of RA, but I guess not. 

I only hope that the nodules don’t get worse, because that might necessitate a review of, and changes to, my current treatment regimen.

But I’ll just have to wait and see…and keep my eyes peeled…