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.

Monday, July 21, 2014

Filtering The Can’t From The Can

While I’m just beginning my professional life, and therefore am new to it, I’m not as good at saying no to things related to writing, my blog, chronic illness, and health advocacy. 

But as far as social commitments go, I have become fairly good at picking what I can and can’t do.

To be clear, this isn’t simply an evaluation of what I want to do.  There are many things I want to do, but ultimately can’t or don’t do because they will either cause me to lose too many spoons, which will prevent me from doing other things, or I’ve already hit my spoon limit, and trying to do anything else would add insult to injury.

It has taken me a long time to get here.  There was a time when I said yes to everything, and often, at great detriment to myself. 

And it’s just not worth it to me. 

And there is still a part of me that really would like to be able to say yes to every social invitation that comes my way.  Saying no is something that I still struggle with, but it is never just a knee jerk reaction.  It is something that takes thought and consideration on my part. 

I know that not everyone understands this.  

It’s really hard when I get pushback when I know that I’m making the right decision for me.

And maybe some people view that as being selfish and thinking only of myself.  But when it comes to my health, everything else comes second.   

And maybe people questioning me when I say no to invitations is a New York thing.  I truly do not remember my life in Michigan consisting so much of running interference about the decisions I make in regard to social events.

And my decision is my decision.  If it’s an event that also involves my boyfriend, and I feel that I can’t go, he can always go without me.  I hope I’ve made this clear to him. 

My saying no and begging out of things doesn’t mean that other people have to feel sorry for me and not go or not do something in solidarity with me.  I don’t expect that from anyone, including those closest to me.

But I do expect some understanding that when I say no, it is truly, first and foremost, a decision that is more about my health and less about the specific event. 

As much as it’s hard for me to say no, I guess it’s hard for some people to accept that answer (and this is something that has happened more than once with different people).

And maybe on my end, it’s expecting too much.     

Tuesday, July 15, 2014

Sometimes Pushing Your Body Is Refreshing

My schedule has been pretty busy lately. 

In the last several weeks, I have started two internships, which means working 9 a.m. to 5 p.m., four days a week.  Being a chronic student, I have never really had to work a full-time schedule before.  So having a more traditional job is totally new to me.

Before I started interning and I had a little free time, I decided to push my body physically, and walked at least 10 miles in a matter of two days.  It was sort of planned and sort of not.  I went a little overboard. 

When it comes to work days or activity days, I don’t always feel it until I stop moving.  Like I can go, go, go, and the minute I stop, it all hits me. 

But even with that, I forged ahead.  Call it stupidity or tenacity or whatever word you find appropriate…

Of course it’s only good until your body bottoms out, which I knew it would.  But it took an entire week before it all hit me, and then I felt like I had been hit by a truck.

I was of course reminded that life isn’t as it used to be. 

And that my go, go, go and never stop attitude and behavior that I really prided myself in before I got sick doesn’t really work anymore.

It is nice to be able to push my body, to see what it can and will do…and what it won’t do.

I think it’s really interesting how we move through different phases of life and how we have to figure chronic illness into that.

In terms of pure physicality, I’m still learning my limits.  Obviously some days are worse than others.  I’ve also learned my limits in terns of social activities, which has taken a long time (which is the subject of another post).

And now that I am working a full-time job, there are new issues to deal with and balance (also another post).  Of course, I am fairly exhausted, so one of the first things that always seems to go is my exercise routine.

I’m still trying to figure out where and when exercise comes in, so I’m kind of glad that I overhauled it before I started working.

I think the only way to know your limits is to test them.  I really wasn’t sure what my body could handle, so I threw as much as I could at it.  And ultimately, I sort of regretted it.

But on the other hand, pushing it was kind of refreshing.  It made me realize I could do more than I thought I could, and it actually took longer than I expected for everything to come crashing down.

This is not something I plan to do all that often, but it is a good way to assess what my limits are at any given point in time.     

Monday, June 23, 2014

My Visit To The 9/11 Memorial And Museum

I recently visited the 9/11 memorial and museum.  I waited to visit until the museum was opened, and it has been open for about a month at this point.  You can go directly to the memorial without a ticket or anything.  You do need a ticket to the museum, and even with a ticket, you can expect long lines.

There was security and police everywhere, which I guess isn’t much of a surprise. 

The entrance to the museum once you are inside the building.
While the main part of the museum is very open, I felt claustrophobic.  I had the distinct feeling that I didn’t belong there, like I wasn’t supposed to be there.  The main part of the museum mainly includes pieces of the World Trade Center that the museum is built around. 

The part of the museum that goes through the timeline of events on 9/11 and includes pictures, news footage on loop, and small artifacts, felt like too much.  I didn’t need to see the things that were there (and there is no photography allowed in that part of the museum).  None of the artifacts belong to the living, because what value would they have?  The artifacts are things that survived when the person did not. 

I was 15 when September 11th happened, and I was under the impression that bad things only happened to other people.  On September 11th, the world felt unbelievably small, and I felt like what happened, happened to a collective “us”.  I had never been to New York prior to 9/11, nor did I know anyone that lived there or died that day.

So for me, I was surprised that I had such a visceral reaction to the museum.  I was only there for about an hour, but it felt like many more. 

The museum facade as seen from one of the two reflecting pools.
I really appreciated the memorial, though, with the reflecting pools that are located in the footprint of the buildings, which contain the names of those that died on September 11th in the World Trade Center, at the Pentagon, and in Shanksville, Pennsylvania, and those that were killed in the 1993 terrorist attack on the WTC.  

I spent some additional time at the memorial site.  Surrounded by trees, and with the constant sound of waterfalls, it really is a place of memory and comfort. 

The museum was a different story.  It felt garish and macabre.  You travel pretty far down to get to the different levels of the museum.  To get out, you have to take a very long escalator that is lit up, and there is church-like music playing in the background.  You arrive back upstairs, to the light of day.

One of the two reflecting pools.
t was a gray and rainy day, which seemed fitting, and really matched my mood as I exited the museum and tried to process what I had just experienced.      

The memorial implores us to remember the lives of those that were lost, while the museum implores us to remember things we would rather forget. 

Honestly, I am glad I went to the museum, but it is probably not somewhere I would go back to.  The contrast between the disembodied feel of the open areas of the museum, and viewing the personal effects of strangers, was just too much for me.  I don’t know why anyone would want to relive that day, and I do feel that the museum capitalizes on other peoples’ tragedy. 

So rarely do I talk about events and experiences outside of illness that have had an impact on my life, so I decided to share this experience with all of you.

"No day shall erase you from the memory of time." -Virgil 
Of course, the things that happened on September 11th were some of the worst things imaginable.  And to my 15 year old mind, the personal tragedies of those who died that day or lost somebody that day were nightmarish.  Then, it didn’t seem like anything worse could happen in the world. 

But since that day, we live in a world in which bad things happen all the time.  And maybe they always did.  Maybe September 11th opened our eyes to a world that is not as it should be.   

The Freedom Tower, standing 1776 feet.  In both name and height, this building represents our country.
While I did the WTC visit on my own, A and I recently visited the Statue of Liberty and Ellis Island, which provided beautiful and expansive views of the quintessential Manhattan skyline, although without the WTC, but now with the Freedom Tower.  Such symbolism of where so many began their quest for freedom generations ago, and the Tower representing freedom for this generation.

While for me New York was never the pinnacle, and regardless of my personal feelings about this city, there is something to be said for having all of these amazing sites in your backyard.

This is the Manhattan I always imagined, except with the WTC and not the Freedom Tower.