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.  

Wednesday, June 18, 2014

My Rallying Cry

I just got back from a two week vacation in Michigan.  I got to spend time with my family and friends.  It was a really nice time.

It also made me realize that some of the comforts of home involve my illnesses. 

There were two and a half days in the last two weeks in which I felt really bad. 

The day after I got home, it rained all day, so that left me with a headache and totally spacey feeling.

Then we were going to a Tiger’s (baseball) game.  I woke up feeling fine, but a few hours later ended up with a pretty bad headache.  I went back to bed and told my sister to wake me up, and each time, asked for another half an hour, because every time I tried to lift my head off of the pillow, I overcome with dizziness.  Eventually, it got to the point where I didn’t have another half an hour before we needed to leave.

So I got up and dressed.

The nice thing was that my family told me I didn’t have to go to the game, if I didn’t feel up to it.  Or, I could go, and if I didn’t feel well, we could leave the game. 

It was so nice.  But I told them that I would go, that I would rally.  And I did. 

But I always struggle with trying to rally and simply waiting until I feel better to do things.  Sometimes I wonder whether I wouldn’t start to feel better just by pushing myself to get out of bed. 

However, then there are real feelings of not feeling well, that you can’t shake, no matter what.

But what was really refreshing was to have people just get it.  Who I didn’t have to explain to, and who I wouldn’t have to justify myself to if I wouldn’t have been able to rally.

And that’s a big part of what is missing in New York.  Aside from my family, of course.  I feel like I have to have an explanation for everything I don’t do.  The lifestyle in New York City is just go, go, go, do, do, do, no matter what.  And that just doesn’t work for me.    

I pride myself in my ability to rally.  Sometimes it takes an hour and I can bounce back.  Other times, it takes hours.  And other times, it doesn’t happen at all. 

But with my family, the important thing is being together.  So whether that means me being in bed and my parents being in the next room, going to a baseball game or the mall or whatever, it doesn’t matter.  Because we’re together.  And now that I live in New York, we get that time so much less often than we used to.

But that time is sacred.  And so is my health.  And when it comes to my family, those two things happen to go together.    

Friday, May 30, 2014

The RA Community Is Big Enough For All Of Us

I recently posted the story about the death of 41-year-old reporter Emma Suddaby from RA.  The article has been making the rounds on social media that is related to the RA community. 

One of my Facebook friends, someone I went to elementary school with, but haven’t seen or talked to in person for probably 20 years, posted the following comment to the link on my Facebook page:

“I've had RA since I was 14 and have never heard of anyone dying because of it.  I get the infection risk, but this is an incredibly rare situation.  I'm sorry to hear she struggled so much and was in such discomfort.

I never knew this person had RA, as by the time she was diagnosed, we were no longer in contact.  Even so, we have been Facebook friends for many years, and I still never had any inkling that we had this disease in common. 

This comment really horrified me.

To me, this comment reads more like it comes from someone who doesn’t have this disease and doesn’t believe it can be this bad, rather than coming from someone who is part of this community. 

To be honest, I am not really sure the purpose that this person’s comment serves, other than adding more fuel to my fire.  Or as a public declaration that this person has RA but it doesn’t really impact their life. 

But it doesn’t read to me as being realistic, and almost comes off as self-hating, or at the very least, in denial about the severity of this disease. 

There is already enough stigma surrounding this disease, especially when you are a young person, so to hear someone in our own community making comments like that is simply deplorable. 

Although while I am including this person in the RA community, it’s not clear whether or not she would consider herself to be a member.

I am taken back to a moment after I was first diagnosed, when I was receiving steroid infusions.  I was trying to get the nurse’s attention to make sure it was okay to listen to headphones.  I couldn’t get her attention, but the girl next to me, who was clearly receiving chemo, told me to go ahead, “You do what you have to do to get through it.”

I was so struck by that, because here she was, receiving chemo, and giving me advice, and making me feel like I was a member of the club.  And we didn’t have the same disease.  So if we can make connections like that with other people who don’t have our same illnesses, think about the relationships we can build with others who have RA.

But solid relationships won’t be built on comments like the one posted to my Facebook page.

The reality is, the RA community is big enough for all of us.    

If we all had RA super severe, we wouldn’t be able to help each other or offer each other hope, and if we all had RA super mild, we wouldn’t need each other.

To be honest, there are times when I’m doing relatively well that I don’t feel like I belong to this community.  But it’s not because people are unwelcoming.  It’s my own insecurities.

I know that I am doing a lot better than some people with RA.  But that’s never seemed to matter in terms of being considered a part of the group and vital member of this community.  And I am so grateful for that.     

This isn’t the first death I’ve heard of at the hands of RA, and unfortunately, it certainly won’t be the last.

When someone in our community dies, it should serve as a call to action.  It should make us more determined than ever to find new treatments and cures. 

It shouldn’t be used as an opportunity to create fractures and friction in the community.  It shouldn’t make us weaker, but it should make us stronger by bringing us together. 

Wednesday, May 21, 2014

Lupus Denial

So I finally bit the bullet and went to see my rheumatologist. 

When I called to make the appointment, they said she had one appointment today or I’d have to wait for over a month.  So circumstance made me face things head on.

And I’ll admit, I was a bit nervous.

Several weeks ago, I noticed a swollen lymph node behind my ear.  A few days ago, it got bigger and became painful.  For those of us who have been on medications for lupus and RA, we know that there is a risk of lymphoma.  So of course, that’s where my mind automatically goes.  Unfortunately.

I’ve also noticed that my immune system is not up to snuff.  I feel like I am constantly about to get sick, but don’t actually ever get sick, which for me is a telltale sign that my immune system is bottoming out.   I’ve also been having a lot of itching and skin legions.     

So the verdict? 

I am having a lupus flare. 

Did I really need a medical professional to tell me this?

No.

Should I have gone to the doctor two weeks ago when I started noticing things were off, or been really proactive and made a preemptive strike a month ago?

Yes.

My rheumatologist is upping my dose of Quinacrine, as I guess I have been on the lowest dose possible until this point.  She also suggested going back on low-dose steroids while we wait for the higher dose of Quinacrine to kick in.  But I’m not feeling that.  If things stay the way they are pain-wise, I’ll deal, despite my tender, achy joints.  Because I finally just got off of the steroids.    

But why can’t I trust my own instincts?  Why, when I knew things were amiss, did I try to ignore them or assume I was being hypersensitive and that I was just imagining all of these things?

Because I’m in lupus denial. 

I don’t think I’ve ever really wanted to admit its primacy in my life.

To me, my RA, while still unpredictable, is at least more predictable than my lupus, at least that is when I can actually tell the two apart.     

I am an empowered patient, but sometimes even empowered patients work against themselves and do stupid things. 

Empowered or not, I have fears and experience denial, just like everyone else dealing with these illnesses. 

Even six years in, I’m not always  prepared for the realities of these illnesses or the things that could come from treating them. 

I can only hope that the increased dose of Quinacrine will calm things down.  I’m certainly hoping that the swollen lymph node resolves itself so that it isn’t there when I see my rheumatologist again in two months.

And I also hope things calm down because in all of my denying what’s happening, I’ve created an insane work and event schedule for myself. 

But as Tim Gunn likes to say, “Make it work.”  I’m going to fake it until I make it, or at least until my illnesses make it impossible.

So yeah, I guess even though I’m admitting I’m in denial, I’m still in denial. 

Wading knee deep in denial (de-Nile).      

(Several years ago, I had a neck x-ray and my rheumatologist in Michigan never told me the results.  So I pulled that out of my medical record and took it to my appointment.  And as it turns out, those results basically explain both my lower back and neck pain and issues.)