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…
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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.

Tuesday, August 19, 2014

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 11th, my 29th 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:
   

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.
 

Monday, August 4, 2014

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…  


Monday, July 28, 2014

Speaking Of Spoons…


I have been looking for spoon jewelry for a while and finally found some that I like on Etsy from The Paper Poppy Store

Last week, I wore the necklace and earrings to work and one of my coworkers asked what my necklace was.  I told her that it was a spoon, that I have lupus and RA, and sort of tried to summarize The Spoon Theory and the idea of spoons as they relate to chronic illness. 

I decided to email her and my two other main coworkers, including my supervisor.  I told them that I was diagnosed with Lupus and RA in 2008 and that I try to educate people wherever I can.  My supervisor already knew about my illnesses, but my other two coworkers did not. 

My email read:

Today when X stopped by the office, she asked me what was on my necklace.  It was a spoon.  My earrings today have spoons on them, too.  I told X that it's in reference to The Spoon Theory, written by a woman with lupus to try to get her friend to understand what it feels like to have lupus.  You might not know, but I've had lupus and rheumatoid arthritis since 2008.  I really try to educate people as much as I can, and since I am working so closely with you all, I figured I would share The Spoon Theory with you:


One of my coworkers emailed me back to say that reading The Spoon Theory made her cry and that she is so grateful to me that I use my “precious” spoons to help others.  I was so touched by her response.

Maybe part of it is the fact that we work in patient advocacy, that there is some measure of understanding.  But I don't think I have ever been in a situation where I felt so good, not only about disclosing, but also about the subsequent response that I received. 

Since I am working so closely with these people, I feel that it is important for them to understand my situation, although I hope that they will never have to see me at my worst; but if they do, I hope they are at least a little bit prepared.

I find that trying to educate people can be exhausting, but in this case, I felt like I had the perfect opening and opportunity to broach the subject. 

And that openness and honesty was returned to me in the responses that I received from them. 

I’ve also realized that it’s really important to meet people where they are.  In this case, I met them at a very basic level.  A comment about my spoon jewelry led to a very meaningful conversation about the nature of lupus and RA, and some of the issues that result from them. 

I didn’t attempt a technical conversation about the major medical complications of lupus and RA, or the treatments used to treat these illnesses.  I tried to give them a basic idea of what it feels like to be me. 

The truth is, you never truly know what is going on in another person’s life unless you ask them or talk to them and learn about them.  I’m sure that when my coworker inquired about my necklace, she didn’t anticipate the depth of the response that she received from me. 

But I’m really glad that she asked, because it opened up a line of communication that may have stayed closed. 

The Spoon Theory has spoken to me since I first got sick, and I like being able to share something so valuable with others.  And more recently, I’ve started talking about spoons a lot, because they truly do make sense to me.   

And I love my spoon jewelry.  The necklace and earrings are a constant reminder to me of what I’ve been through, and my daily battle for spoons.