Wednesday, September 2, 2015

“I Feel Your Pain”: Four Words That Anyone Living With Chronic Illness Or Chronic Pain Would Like To Hear

A lot of us hope to receive compassion and understanding from those we are closest to.  However, most of us feel like we would never want our loved ones to get sick, and that’s the only way they would understand. 

But at some point, they will experience pain, too, even if it is just acute pain.  And it’s how they experience that pain that is really critical to those of us who deal with chronic illness and chronic pain on a daily basis. 

Recently, my BF had back pain.  He was laid up with an ice pack and it hurt him to move.  I tried to be supportive to him because he’s supportive to me when I’m in pain.

But this was more than that. 

He said, I don’t know how you do it all the time.  I knew where this was going, but I wanted to hear him say it.  Being in pain.

For him, one day of intense pain was enough to basically make his life miserable.  So multiply that by 24-7-365 and you’re looking at my life in a nutshell for the past eight years. 

Now you have to understand, my BF and I have been dating for three and a half years.  And we have pretty much spent every day together since we met. 

And maybe that’s what it takes.  Not just spending all that time together, because there are plenty of people that do that and still don’t have any understanding of what their loved one is going through, but to really be open and honest with each other.  

My BF is one of the only people that I am really open with about when I am in pain and where, because most other people just don’t want to hear it or just don’t care.    

Recently, it’s come to my attention that some people have viewed my behavior as aloof and standoffish.  But when you’re in pain all the time, it’s hard to be happy and cheerful.  I do the best I can to put on a brave face, but it might not come across that way.  And even if it does, I really have no other choice but to live with and through the pain.  Otherwise I would never get out of bed or be able to do anything.  But I get up in the morning, for the most part, and get myself to where I need to be.  And to me, that’s enough.  But for some people, that’s not enough.  But if they haven’t experienced pain, or they’ve never extrapolated their pain experience onto someone who lives in pain, they aren’t going to get it, and they aren’t going to understand that sometimes doing the best you can is really all you can do.   

And until you’re not in pain anymore, you don’t realize the negative impact that near-constant pain can have on your life.  It wasn’t until I got a very successful cortisone shot in my hip, in March that, not only myself, but others around me, noticed a distinct difference in me.  People told me I seemed lighter and happier.  And I am.   

Because pain is a drain on our bodies and our brains.  It takes everything you have to work through it.  And sometimes, no matter how hard you try, you just can’t.  And that’s okay.  There’s a time and a place for that. 

While my BF didn’t directly say I feel your pain, by saying that he didn’t know how I dealt with pain on a daily basis based on his experience of one day of significant pain, made me feel that progress had been made.  That maybe he’s one step closer to getting it than almost anyone else in my life. 

And it’s important to have that with the person you spend the majority of your time with.  It takes time.  And not all people know how to be empathetic.  Some people will never get there.    

Being in pain is more than a number on an arbitrary pain scale.  It’s about living life to the best of your ability in spite of being in pain.  Whether that happens gracefully or not, I don’t think matters.  What matters is when someone in your life, even if only for a day, gets a glimpse into what you are going through.

Tuesday, August 18, 2015

What Med X Means To Me: My Feelings The Second Time Around

I can’t begin to describe how excited I am for Medicine X this year. 

I was super excited about it last year, but then my dad died and pretty much everything in my life took a backseat.

The first day of the conference was the funeral of one of my best friend’s dad, who died three weeks after my dad died.  She drove across the state of Michigan to attend my dad’s funeral, and I felt awful that I couldn’t be there to attend her dad’s funeral.

Needless to say, I was a basket case.  I knew I was going to California for Medicine X, but how I actually made it there and back, I’m not really sure. 

I enjoyed the experience, to be sure, as much as I could given the circumstances  that occurred in the weeks leading up to Medicine X. 

If it would have been up to me, I probably wouldn’t have got to Medicine X last year, but my mom told me that I had to keep my prior commitments, that that’s what my dad would have wanted. 

I felt bad going, though, because my head wasn’t in the game – I wasn’t able to give it my full attention.  I wasn’t even thinking that much about health, to be honest.  I was hoping that I wouldn’t flare after my dad died, but given all of the emotional turmoil, I wasn’t sure how I would fare.

Luckily, I had an amazing roommate who made sure that I had people around me.  I felt included, though if I hadn’t had the support, I would have felt completely alone and probably wouldn’t have appreciated the experience to the full extent that I did. 

The effect that Med X had on me was profound.  I was completely overwhelmed by the amazing people that were involved, and the way patients, specifically, were treated.  There is, in my opinion, nothing else like Medicine X. 

I’ve heard some people bashing it lately, and I wish that everyone who wanted to be a part of it could, because it’s a life-changing experience.  I walked away last year with a much clearer sense of who I am as a patient, and how patients have the power to really make change in healthcare. 

I was so affected by the Ignite talks that I started writing mine in my hotel room at Medicine X last year.  I was so inspired by others, and really wanted to share my story with other people.  Last year I was on the Engagement track, where I basically had to Facebook and Twitter the heck out the conference.  In fact, Medicine X is really where I got my Twitter prowess from.  I’m glad that’s all of the responsibility I had given everything else that was going on. 

But this year, I knew I wanted more.  I feel like I came into my own at Medicine X last year.  When I applied for last year’s conference, I really wasn’t too sure about exactly what the Medicine X experience would be like.    

This year, I’m so excited that I’m going to be giving an Ignite talk during Medicine X ED, which is new this year.  I’m excited to share my story.  I’m excited to see old friends and to make new ones.  I’m excited that my roommate this year is a fellow blogger who I have followed online since right after my diagnosis, and I finally get to meet her in person.  And I feel extremely grateful that I’ve had the privilege of experiencing Medicine X not just once, but now what will be twice.     

Excited to be seeing some of you in Cali in about five weeks!

Thursday, August 13, 2015

Dear Dad (#4)

Dear Dad,

Today is August 13, 2015.  Officially a year and one day since you passed away.  How does it feel?  Everyone says the first year is the hardest.  So is there some magical moment that propels you from year one to year two?  Am I supposed to feel different today?  Lighter?  I don’t.  Recently I’ve been having these nightmares where I wake up with a start and am filled with dread that you died.  Then I realize it’s not a nightmare.  It’s real life.  It actually happened.  You are gone. 

Two days ago was my 30th birthday.  It was such a bittersweet day.  I’m glad I’ve been alive for another year, but it is weird not having you here.  And today is the day that my world stopped turning one year ago.

According to Elizabeth Kubler-Ross, there is anticipatory grief.  I guess what I mean is that in the back of my mind, I knew you would die someday, but I anticipated that I would be well into adulthood when that happened, like I would be your age when you died, not that you’d be 62 and I’d be barely 29. 

You didn’t keep your promise dad, and it’s a promise that everyone makes that they can’t keep.  You said you’d always be there and you’re not. 

Are you happy where you are?  Or is there only nothingness?  Nothingness like the hole in my heart that exists because you are gone. 

When I got home from celebrating my birthday last year, I discovered that there had been massive flooding in Michigan and that mom didn’t know where you were.  On the morning of the 12th, Molly texted me to say you had never come home.  I remember being filled with such emptiness, trying to imagine where you might be or what might have happened to you.  I tried to do what I could from New York, calling the Michigan State Police, calling anyone I thought would listen.  But nothing seemed to work.  Then mom called me at around 9 p.m. on the 12th to tell me that you had died.  The world fell out from under me.  I remember repeating over and over again, through my tears, that I didn’t understand.        

I am still waiting for you to walk through the door, say, “Hey babes!  I’m home.” And act like you’re still here, like you were never gone.  But I can’t hear those words out loud anymore.  I can only hear them reverberate around my own head.

At your funeral, I was crying so hard, I couldn’t breathe.  I didn’t know how life would move forward.  And now it’s already been a year.  How is that possible?  I guess we have two choices.  We either stop living, or we move forward even though life no longer makes sense.

Sometimes, some random guy will pass me on the street and will be wearing your cologne.  It’s disarming.  It makes me happy and sad at the same time.  And I have to look really hard to make sure it isn’t you. 

I still struggle with the religious aspects of your death.  As Jews, we commemorate death on the Hebrew calendar, and the date changes every year.  And I wonder why I am forced to focus on another day, when there isn’t a day that goes by when I don’t think of you. 

Being in New York, I’ve found it hard to go to services.  And I feel really guilty because it’s something that you took such pride in doing for your own father.  I am doing my best to find other ways to make your life and death matter.     

I went home to Michigan for the yahrzeit and it was good to be surrounded by Mom, Molly, Bubbie, and Nancy.  We also unveiled your stone, as is tradition.  It’s weird to say, but the stone is nice.  When you died and we were at the funeral home, they asked us if we wanted the same casket we had for Zaydie or if we wanted to look for a different one.  No one else wanted to, but I was hoping that something would speak to me.  It didn’t.  But the stone, if it has to be here and you’re not, is dignified.   

I don’t think there’s ever really enough time in life.  And we only realize this when it’s too late.  There’s so much I would have liked to have said to you.  So many more times we could have talked.  So many things that you have already missed and will miss in the future.  You didn’t get to see me graduate from Sarah Lawrence College with a second Master’s degree.  You won’t get to see Andrew and I get married (assuming he proposes) and you won’t get to be a grandfather to my future children.

All that I have left are pictures and memories.  Some days that feels like enough, but most days it definitely doesn’t. 


“Summer has come and passed/ The innocent can never last/ Wake me up when September ends”

-         Green Day

Love,

Leslie

If you are interested in reading the other Dear Dad letters, you can read #1, #2, and #3.


Wednesday, August 5, 2015

Gifts For Chronically Ill People

RA Guy recently spearheaded the Hope Care Package Exchange.  The rules were simple.  You would have one person assigned to send you a care package, and you would be assigned one person to send a care package to.  There was a $20 to $25 limit on each package.   

I wanted to send a care package that had some fun, but useful, illness related items. 

Here is what I sent in my care package:





“Thank You For Existing Card” Tiny Card – Emily McDowell Studio – http://emilymcdowell.com/products/145-t-tiny-thank-you-cards-set-of-10-thank-you-for-existing (This is the same person who has gotten a ton of press for creating Empathy Cards for those with chronic illnesses)

With the exception of the cards, which I bought online, I bought everything in the care package that I sent at C.O. Bigelow.  They only have one store, which is located in New York, but they also have an extensive website, although it does not include every product that they sell in the store.

I had a lot of fun picking this stuff out.  Honestly, I love giving gifts.  I like making other people happy.  Even when my wallet is running on empty, I get more joy from gifting others than I do from gifting myself.  

  
Here is what I received in my care package:



This care package came with the following note, as it was sent from Amazon.  

  
This is actually a great idea.  If you have favorite products you want to share with someone else, and you know exactly what they are, you don’t even have to leave the house.  You can simply go to Amazon, order them, and have them sent directly to the recipient. 

I’ve never tried any of these products, so I am excited to try them!  

  
I also recently had a chronically ill friend who was hospitalized, so I took a care package to her.  It’s easier to give a care package in person because then you aren’t really limited in the size of what you take, whereas when mailing, shipping has become pretty expensive, so I try to keep those things small. 

I know my friend was interested in adult coloring books, so I took her a coloring book and markers.  I also know that my friend is really into Korean beauty products, so I bought her a few of those, as well.  When assembling care packages to people you know rather than strangers, it’s easier to be a bit more personal and targeted in what you include. 




Tony Moly Hand Cream – I purchased Cocoa scented but could not find online.  My second choice was Peach –http://www.urbanoutfitters.com/urban/catalog/productdetail.jsp?id=31754682&category=BRANDS&color=067


Finally, I currently have a friend going through some significant health challenges.  I wanted to change it up a bit and get her something that was more meaningful than giving her products she could use as she’s going through a lot right now and I didn’t want to overwhelm her or assume that she is knee deep in knowing that she is ill.  I wanted to get something that was inspirational but not religious.  A care package, per se, like the others, didn’t feel quite right in this situation, so I went with: 


 
I don’t share all of these different things to toot my own horn about the gifts I give.  I did this because I love gifting people, and especially when talking about chronically ill people, I wanted to do something that would brighten each person’s day just a little bit.

And I wanted to give you ideas of what kinds of gifts you could give to the chronically ill people in your life – or even for yourself – for you, from you! 

Thursday, July 23, 2015

Summer Giveaway Winners

I’m excited to (finally) announce the winners of my summer giveaways. 

The winner of the Scough: Kathryn

The winner of the Make Great Light Filter: Joyce

The winners of the Coloring Books: Carly and Britta

If you are a winner – if you’re not sure, I commented on each comment letting you know if you were a winner or not) – please e-mail me ASAP your full name and contact information to gettingclosertomyself@gmail.com, and I will put you in touch with the person from the company who will make sure you get your prize.

Thanks so much to everyone for entering.  I hope to have some more giveaways again soon!

Tuesday, July 21, 2015

Am I Medication Dependent?

A few weeks ago, I forgot to take my meds.  Well, more accurately, I accidentally took my evening meds in the morning, which meant I couldn’t take my morning meds that I missed.  No harm, no foul, right? 

WRONG! 

The next day, before and after taking my morning meds, I felt awful.  I was in pain all over and felt nauseous and dizzy.  I stayed in bed all day.  It was really terrible.  I felt like I was going into a flare. 

And I had a frightening realization for the first time ever.

I am medication dependent. 

I can barely go one day without meds without feeling terrible.  Seriously?  So when I saw my rheumatologist recently, I mentioned to her what had happened and she basically agreed that, that means the meds aren’t working as good as they should be.  This is really frustrating.

The goal is for me to be stable, but one day of missed meds and feeling awful means the opposite of stable.

I’ve also learned that I can’t take my morning meds much later than 11:30 a.m., or I will feel bad all day.  So there is a very small window in which taking my daytime meds actually works.  I have a similar issue with nighttime meds in that I can’t take them much beyond 1 a.m., but the difference is that my nighttime meds are more for helping me sleep and less about treating my lupus and RA. 

After discussing these issues, my rheum talked about clinical remission and how it is still possible for me.  I am not convinced.  How can I go barely a day without meds without being incapacitated and believe that remission is a possibility in the near future?

I don’t even like thinking about the term remission because I don’t really know what it means.  I mean, I know what remission is, but it seems like such a lofty goal, a goal I’ve never really considered pursuing before. 

For me, the bigger goal is preparing my crazy wired body for pregnancy sometime in the next several years.  And whether that comes with remission or not is anyone’s guess. 

I very rarely make mistakes in taking or forgetting to take my meds altogether.  But it’s frustrating to know that I don’t even have a day grace period. 

It means I can’t mess up.  It means I have to be perfect all the time.  And I guess that may be one of the reasons that I have always focused on medication above other things, like diet and exercise.  Now that I’m back to really thinking about those other things, it’s even more annoying that I’m medication dependent. 

It’s much easier to take meds when you know they work, or you have the expectation that they will work.  And when you experience the meds not working because you didn’t take them, it’s sobering to realize that your health or lack thereof is totally dependent on meds and your ability to take them.

Friday, July 3, 2015

Summer Giveaways And Promo Codes

I wanted to do something fun for summer, so I’m providing you with some promo codes and giveaways for a few products that I have been introduced to recently.

Scough*

Scough is this super cool company out of Brooklyn.  They’ve taken wearing a mask to a whole new level.

As someone who has had to wear a mask on a plane before, the Scough, while there, is less obtrusive than simply wearing a mask.  And it doubles as a scarf, both when you’re using the mask/filter and when you are not.  I had to wear a mask on plane one time when my doctor told me that was the only way she would clear me to travel.  It was embarrassing, uncomfortable, and all around annoying.  As someone who is also very sensitive to smell due to lupus (and as someone who frequents the NYC subway system), I could also see how this can be useful in situations where I am overcome by odor to the point of getting nauseous. 

Scough has generously offered to provide one lucky reader with a free Scough. 

If you enter and don’t win the Scough in my giveaway, but are interested in getting a Scough for yourself, you can receive 50% off your order when you sign up for a one year filter subscription – you pay $15 each and receive a new filter every three months – along with a purchase, using leslierott50

If you don’t want to purchase a subscription, you can use leslierott15 and receive 15% off any order. 

For more information on this product, check out http://wearascough.com/.





Make Great Light NaturaLux Fluorescent Light Filters**

Many of us with lupus, including myself, experience photosensitivity from fluorescent lights.  This is a really pesky symptom, especially considering that fluorescent lights are everywhere, including in most hospitals and doctors’ offices. 

I really wanted to try this product out, but currently do not have any fluorescent lights in my immediate environment.  I would love to try it out once I do.

However, Make Great Light has graciously offered to extend their offer to me to one of my readers.  One lucky reader will win either a panel filter or a set of tube filters.

For more information on this product, check out http://www.makegreatlight.com/.       

Adult Coloring Books***

I’ve actually been looking for adult coloring books lately, when I happened to be contacted about them. 

Two lucky readers will win either a Stress Less Coloring – Flower Patters: 100+ Coloring Pages for Peace and Relaxation or Stress Less Coloring – Mandalas.



“League of Mortals” by Duncan Cross****

I recently reviewed Duncan Cross’s novel “League of Mortals”.  He has provided a coupon code – JD55B –for $2 off the book on Smashwords.  The code expires July 10, 2015.   


***

Promo codes are yours to use. 

If you would like to enter to win the Scough, please post a comment in the comments below about why such a product would be helpful to you.

If you would like to enter to win the Make Great Light filter, please post a comment in the comments below and explain why the filter would be helpful to you.  You don’t need to have lupus, but should have some sort of light sensitivity. 

If you would like to enter to win one of the coloring books, please post a comment in the comments below about what you do to relieve stress, and how coloring might aid in that.

You can enter to win each of the giveaways, but please comment once for each.

If entering for more than one giveaway, please indicate your preference, as different winners will be chosen for each prize.

Entry will be open until July 17, 2015.  Winners will be notified in reply to their comment(s).

Disclosures:

* Scough provided me with two free samples to try out.

** Make Great Light offered to provide me with a free filter to try.  Since I was unable to accept this offer given that I am currently not exposed to fluorescent lights, they agreed to extend that offer to one of my readers. 

*** Adams Media provided me with four copies of some of their older coloring books for free, and are also planning to provide me with free copies of their two new coloring books once they are released.

**** Duncan provided me with a free copy of his book to read and review.  

Tuesday, June 30, 2015

League of Mortals*


Today I’m honored to have my blogger friend Duncan Cross on Getting Closer To Myself.  Duncan is the author of “League of Mortals”, a semi-autobiographical novel about a main character who is diagnosed with Crohn’s Disease.

The book showcases Duncan’s unique brand of humor, and it also is a very raw and real portrayal of a high school aged character whose life is detoured by chronic illness. 

As of late, novels with chronically ill main characters are kind of becoming a thing, but those books are not written by people with chronic illnesses, so the experience that Duncan brings to the story is so powerful and important. 

Just be warned, there’s a lot of talk about shit, as in poop, and other bodily functions.  

Without further ado…

First off, can you tell my readers a little bit about yourself and your illness story?

DC: I grew up in Florida, and was a pretty normal kid, though maybe a little too much of a smart-ass. I was diagnosed with Crohn’s Disease in my senior year of high school – it came out of nowhere, and totally wrecked my college and career plans. Still, I spent several years trying to pretend I wasn’t sick, until about 2003, when I started a flare that didn’t end until I had surgery in 2006. That forced me to really grapple with illness, to quit pretending I could pass for normal. I found a lot of help online in various communities, then started my blog in 2008. Almost everything about my illness since 2008 has been documented on the blog, but technically I’ve been in remission since the 2006 surgery.

How did “League of Mortals” come about?

DC:  My freshman year of college was terrible; it was really bad, mostly because I was put on a mega-dose of prednisone. I started writing about it as a form of self-therapy, but I wanted to leave the illness part out. I wasn’t comfortable talking about my disease, so I had this character who glides through his freshman year, leaving a trail of destruction in his wake. And I realized none of it worked unless you understood that he was sick. I started writing League of Mortals as a character sketch, to explain why Wesley does what he does, and realized it was a better story than the college novel. I still plan to finish the college novel – it's titled F.U.

Interesting title.  Why did you decide to write a work of fiction rather than a more traditional memoir type book that a lot of chronic illness bloggers tend to write?

DC: A few reasons... first, bookstores are stuffed with memoirs by sick people, but there are hardly any novels about chronic illness. Memoir is a crowded market for sick authors, but fiction is wide open.

Second, I think there's a brutal honesty in fiction that just doesn’t happen in memoir. There’s stuff in LoM that I would never have been able to write as straight memoir – but it’s important stuff. Fiction gives me the cover to be incredibly raw and honest about my illness and my life. The paradox is that I think readers get a more realistic sense of illness from the book being fiction than I would be able to provide in memoir.

Third, the events in my life did not happen in a particularly meaningful order. Even though the book is semi-autobiographical, some of the stuff did not happen my senior year of high school – e.g. prednisone. By reorganizing those events, I could tell a much better, more important story. Most people’s lives do not have a narrative arc – mine doesn’t, as far as I can tell. But the need for narrative is vital to how and why we read. For some memoirists, that need pushes them to write inane things about their lives, so that it all makes sense in the end. Fiction lets me control the narrative – lets me reimagine and redefine what my disease means – without the urge for self-justification.

Wesley’s character really highlights what it’s like to be a young person with a chronic illness – and there aren’t that many of those characters out there.  We see him transform, both based on his own experiences, but also based on the experiences of those around him and their reactions to his chronic illness.  Some may say that his transformation was negative, but I think those of us with chronic illnesses understand that there are a lot of varied emotions that come with being diagnosed with an incurable disease.  How did you balance being true to the character, while simultaneously making him seem sympathetic, as well?

DC: One of my least favorite ideas is that sick people get rewarded at some point for being ill: “That which does not kill you”.... I didn’t know how the story was going to end when I sat down to write LoM, but I knew I was not going to reward Wesley for being sick. I think he just about breaks even: he’s not a better person by the end of story – not stronger, not happier, not smarter. Just a different person. And that is such an important idea for me.

As for sympathetic, that was indeed a challenge. In early drafts, I focused mostly on medical stuff, and it made for brutal reading. I realized I had to give a sense of Wesley’s personality before he got ill, so that you understand where he’s coming from when things get really bad. I found that writing about him as a whole person – talking about music and his grandparents and what he was reading – made him a lot easier to get along with. I know it seems like filler, but those bits are important to understanding Wesley.

The character of Mrs. Strunkel is just awful.  Truly.  There’s always got to be one in every bunch.  Was there someone in your life that made your own life miserable like that?  

DC: She is indeed based on a real person who made my life very difficult. But keep in mind that Mrs. Strunkel thinks she’s a good person. She believes the things she does are important and just and good. In a perverse way, illness maybe does make her a better person in the end.

I think you do a really good job of capturing how healthy people have difficulty understanding what it’s like to have a chronic illness.  The character of Wesley loses a lot of weight as a result of being sick, and every woman he encounters tells him how much they would love to be able to lose weight.  In writing this book, what did you want to get across to your readers about the experience of Crohn’s Disease, in particular, and chronic illness, in general?

DC: I wanted to be honest about illness. I wanted to create a character whose illness was not shorthand for some virtue or flaw in psyche – the way Beth in Little Women is sick because she’s a perfect little angel. I didn’t want the book to be just about Crohn’s – I wanted it to capture as broadly as I could the experience of chronic illness. I actually tried to write a version where the diagnosis was some made up disease, but then I had to make up symptoms and treatments and drug names. It got exhausting, so I went back to what I know, but the specific diagnosis – Crohn’s – is not the main thing driving the story.

I agree in that I, a person who has lupus and rheumatoid arthritis – definitely have had similar experiences when it comes to chronic illness that you talk about in the book.

Here is the million dollar question: How much of the book is fact and how much of it is fiction?

DC: For the same reasons I chose to write it as fiction, it gets really tricky for me to admit what parts are totally factual. But it’s all true to my experience of illness, if that makes sense.

Thanks for being here today Duncan!

You can purchase a copy of “League of Mortals” from Amazon and Smashwords.

Duncan has graciously afford to provide a coupon code for my readers.  You can get $2 off the book from Smashwords by using the code JD55B. The code is good through July 10, 2015.

And you can follow Duncan at http://duncancross.net/.

* In the effort of full disclosure, I received a free copy of this book courtesy of the author. I also recently got to meet up with Duncan and he treated me to dinner.  I However, my choice to have Duncan here was my choice, and had to do with my personal opinion of the book.