Monday, March 2, 2015

Failure Does Not Come Easy

It’s funny – as in not – when you write a post about loss and later in that same day, you experience another loss, but of a different kind.

Failure, of any kind, has never come easy to me.  And I think I’ve become even more stubborn and pigheaded since I got sick. 

If someone tells me I can’t, it only motivates me to show them that I can.

My schedule has been very difficult for me, which I’ve talked about a lot here – balancing work, school, life, and illness. 

I know that I’ve worked my ass off in this job, and that I wanted this job more than anyone else they interviewed.  And that wasn’t enough.  There was nothing more that I could have done.

I want to work, so just let me work. 

I know that there are a lot of people out there with lupus and RA who can’t work, and I know how lucky I am that I can.    

This job, which came about after I left my internship, when my dad died, gave me a reason to get up and get out of bed in the morning.  I had somewhere to go.  In the emptiness that New York can feel like, I finally had a place where I belonged. 

A lot of people have been telling me lately that everything happens for a reason.  But ever since my dad died, I’ve been having a crisis of faith.  I felt called to this position, like this is what I was meant to do, and now I’m questioning everything.   

I’ve been bitten by the advocacy bug, it’s in my blood.  And it has felt so amazing to advocate for patients other than myself, and to take what was a profoundly negative experience in my life and turn it into something positive. 

I know something will come along; I have too many degrees for it not to.  But I was happy here.  I felt at home here.  This job was reason enough for me to force down my feelings about this city and stay. 

Clearly, it wasn’t a definite. 

In my view, it was 98% assured, and therefore, I find myself falling yet again into that ugly 2% of this never happens to anyone, but it happens to me. 

It’s frustrating to be somewhere, where you feel like you’ve found a place, and then be told that you’re not.

I’m a professional, and I’m going to work until they tell me I’m done.  The patients don’t deserve to suffer or experience my frustration at this situation.  They are the number one priority in my work, and I am going to keep it that way.   

Aside from the fact that I love my work and the people I work with, which is the number one most upsetting part of this, I now have bills to pay, and not working is going to complicate that. 

And truth be told, I know this is totally a first-world problem, but this is the first job I’ve ever lost.  In the past, I have completed that phase in my life, and it was time to move on, in a way that was very mutual, if not exclusively guided by me.  So that’s a hard pill to swallow.  I’ve been rejected from plenty of jobs I’ve applied to, but never one I was already working in. 

I know I’ll get through this, I always do.  I’ve already started looking for other jobs.  But that doesn’t mediate the hurt and the sting that I feel right now. 

As the BF said, this isn’t the worst thing that has happened in the last year, which makes it even worse.    

But, nudge, nudge, wink, wink, I am going to need a job ASAP, especially once May hits, so if anyone has any ideas or leads, please let me know.  I am not too proud to ask for help…

Tuesday, February 24, 2015

Loss On Top Of Grief On Top Of Illness

I’ve been struggling a bit emotionally lately. 

It just passed the six month mark since my dad died, and I’ve been missing him a lot.

Some days I feel very coherent about it and present, and some days it just feels completely unreal, like it never even happened.    

On top of that, I found out that one of my fellow bloggers on HealthCentral, Brad Carlson, passed away from complications of RA. 

When I received the e-mail about it, it felt like a sucker punch to the gut.  I couldn’t believe it.  Brad was just 50 years old, and was diagnosed with RA six years ago.

I’ve been living with lupus and RA for seven years now, so that really hit home for me. 

Having lost my dad when he was 62, I know what it feels like to lose someone before their time.  I have been faced with my own mortality.  But this hit me even harder.  I know people can die from RA, but I’ve never known someone, even indirectly, that has. 

And it feels weird.  I posted about it on Facebook and Twitter, and people offered their condolences. 

But who am I to take claim of this loss? 

Who am I to feel or not feel something about this?

How do you get all broken up about someone you’ve never even met before?

I never met Brad in person.  I don’t even think we ever talked on the phone.  But we communicated via email, and by sharing our struggles with RA, we knew each other in that way. 

And I realize…We do need sympathy.  As a community, we mourn this loss collectively. 

And we didn’t have to meet.  We were partners in the struggle that is living with RA. 

I know that death is a part of life, but it doesn’t make it an easy part, especially if you lack the understanding as to why it had to happen when it did. 

Lately, I feel like people expect me to be over the death of my dad.  That I should just move on.  But it’s hard to move on when someone who was so important isn’t there. 

There are so many things that I wish for.  I wish there wouldn’t have been a flood.  I wish my dad wouldn’t have gone to work that day.  I wish Brad would never have been diagnosed with RA. 

I struggle with how to make sense of these events in my own life, as I grapple with my own issues. 

It feels like too much.  

Wednesday, February 18, 2015

Dear IKEA, Get It Together!

Moving, under the best of circumstances, is a spoon suck.  It’s even more of a spoon suck when things don’t go as planned.

After ordering over $1,200 worth of furniture from IKEA, we ended up realizing that we needed a new bed. 

Neither my boyfriend nor I drive or have licenses, so my boyfriend and his friend rented a truck to move the rest of our stuff, and stopped at IKEA to buy a bed.

Upon opening the bed to put it together, we discovered that a piece was broken.  We immediately called IKEA and they said they would FedEx a replacement part.  Keep in mind, they had a picture that we emailed them of the part and the damage. 


A week later, we received the completely wrong part.  The part we needed was wood and they sent us a metal piece.

Again, we contacted them immediately.  They said our case would be put on high priority.  A week and a half later, we received the correct part, but with even worse damage than the original piece.



We have contacted them via phone and email at least 10 times at this point. 

This has been going on for over a month.  I had hoped that they would rectify this situation on their own. 

I didn’t want to play the illness card, but I’m finally at that point.  We have been sleeping on a mattress on the floor for over a month now.  I have lupus and RA.  That’s not great for my joints.

Not to mention that the stress of this situation hasn’t helped health matters either.   

And IKEA just can’t get it together.  I have already told my credit card company that I will not pay the $1,200+ bill until this situation is resolved.  And I’ve filed a complaint with the Better Business Bureau.

I don’t mess around – and we need a bed! 

In the past, I have had nothing but good experiences with IKEA.  My apartment in Michigan was almost entirely furnished with IKEA products.

But this situation is different.  I shop A LOT.  And this is by far the worst customer service I have ever experienced. 

I really, really did not want to play the illness card.  But nothing else is working.  And it’s the truth.  This isn’t a healthy situation right now.  And IKEA needs to fix it.

They are not acting in good faith, and they are not standing by their product or their company name. 

Come on, IKEA!  Get it together! 

Monday, February 16, 2015

#ChronicLife Redux

Britt, TheHurt Blogger, came up with this idea to live tweet her life with chronic illness on Twitter for 48 hours.  I was so inspired by the amazing interactions that were created because of it that I decided to do my own version of #ChronicLife. 

I will include all of the tweets here so that you can see them if you missed them while I was live tweeting, or if you want to take a look at them again.  They are presented with the most current listed first.   

I learned a lot from this experience.  I learned that there a lot of people out there, aside from my mom, on both FB and Twitter that follow my story.  I learned that my disease is not in control and that there is a strong likelihood that my current medication regimen is no longer working. 

More than anything, though, I was reminded once again about the robust chronic illness community that exists online, and that has helped me so much over the last seven years.

This experiment went beyond lupus and RA, and included others living with other chronic illnesses, as well. 

This experience is so much more than a hashtag.  It is a movement toward greater awareness and advocacy, so that those with other chronic illnesses can see that our experiences are similar, and so that those without chronic illnesses can get a small glimpse into what our lives are like, living with chronic illness.   

I truly want to thank everyone who supported this effort, who favorited and retweeted, and who followed along on the journey.  This wouldn’t have been possible without all of you.   

Thursday, February 12, 2015

Just want to thank everyone who joined in on this #ChronicLife journey the last two days. I’m grateful for the support. Will blog next week!

I hope people don’t view the last two days as me simply complaining. Wouldn’t be doing this if my life wasn’t impacted by illness. #ChronicLife

Zonked out again. Just got up for meds, etc. Wondering when this cycle is going to stop. Work/school, eat, sleep is all I do. #ChronicLife

Veggie gumbo. BF made a double batch over the weekend so we’d have leftovers for a few meals this week. #ChronicLife


This is the face of pain. Sexy, right? I wonder where this falls on the pain scale. #ChronicLife


Today was a real struggle. Lots of pain and fatigue and I pushed myself too hard. Looking forward to the weekend. #ChronicLife

Invisible illness sucks. I could have used some extra help and kindness today, but I look young and healthy. #ChronicLife

Do I look as tired as I feel? No spoons left whatsoever. #ChronicLife
  

 Two classes down, one to go. And I need a nap badly. Really badly. #ChronicLife

One class down, two to go. And all I want to do is go to bed. #ChronicLife

I have come to find cross-body bags more comfortable than regular one-shoulder bags, but school… #ChronicLife


 10 minute walk to subway, 30 minute subway ride, 30 minute train ride, and 20 minute walk to campus. Finally at school! #ChronicLife

Escalator was off and didn’t feel like waiting for the elevator, so I walked up the escalator. Big mistake! Could barely walk. #ChronicLIfe

Good morning! Love my @Keurig so I don’t have to battle with a heavy coffee pot. #ChronicLife #coffeeaholic


 Didn’t sleep well at all. Will probably be running on fumes today. #ChronicLife

Wednesday, February 11, 2015

Signing off for tonight. More #ChronicLife bright and early in the morning. Are you all ready for school? Don’t worry, I’m not tiether.

As is my MO lately, I crashed at 8:30. BF just woke me up to brush my teeth and take my meds. #ChronicLife


 Roasted veggie pizza and veggie meatballs. Courtesy of the BF. He’s so good to me. #ChronicLife #mymancancook


Post shower #selfie. I was too tired to shower this morning. Now it’s pajama time. #ChronicLife


As tired at the end of the day as I was at the begging. That means fatigue is bad. But at least it’s still light outside. #ChronicLife

This struggle is for real. Even the good days can be a struggle. Working with illness is a struggle. We power through. #ChronicLife

There are bright spots. This makes me happy beyond words: http://medicinex.stanford.edu/medexed-speakers/... #ChronicLife #medx Crazy that people care about my story

You’re hearing it here first: After being on my longest running medication regimen, I believe it has stopped working. #ChronicLife #realtalk

I’m exhausted already. This is one of the most difficult part of living with these diseases. Battling fatigue. @ChronicLife

Been awake and morning meds have been on board for two and a half hours. And I still feel like I am wading through jello. #ChronicLife

10 minute walk to subway. 25 minute subway ride. 20 minute walk to work. Is it bedtime yet? #ChronicLife

Only had a seat on subway for half the time. Took all my energy to hold myself up. #ChronicLife

No makeup this morning. No energy and moving at a snail’s pace. I’ve got to conserve save my spoons for the commute. #ChronicLife

Let my #ChronicLife commence. Up, but not at them. Super stiff and still in zombie.

Monday, February 9, 2015

#ChronicLife

Just a quick post to let you know that I will be chronicling my life with chronic illness this Wednesday, February 11, 2015 and Thursday, February 12, 2015 on Twitter.

Follow me on Twitter at @LeslieRott and the #ChronicLife, or watch Facebook for tweets.

To find out more about the #ChronicLife experiment, visit The Hurt Blogger.

Monday, February 2, 2015

Do You Keep A Stock Of Meds With You Just In Case?

Now that we no longer live in Manhattan – and hopefully I will fill you all in on the move in a future post – I’ve decided to carry at least one night and one day’s worth of meds with me at all times.

The Blizzard of 2015, which wasn’t quite what we were expecting, also prompted me to make the decision to carry some meds with me at all times.

Having to commute from outside of Manhattan and back means that if there are severe issues with the train or weather, I might not be able to get home.  Because we know people in Manhattan we can stay with if we need to, there is a real possibility that there may be times when we have to do that.

And the main thing that would prevent us from being able to do that – or would at least make it difficult if we didn’t have a choice – is me not having my meds. 

I can’t sleep without my night meds, and if I don’t take my day meds before noon, I won’t feel good.  Yeah, it sucks to be in a situation where I am that dependent on meds, but such is life with lupus and RA, I guess. 

The only time I ever really have extra meds with me is when I’m traveling.  I always bring all my meds with me just in case.  And that seems totally logical. 

But the idea of getting stuck in the City, without my meds, seems kind of ridiculous. 

It’s just another bizarre thing with New York living that makes me realize that I’m not in Michigan anymore.  I’m not a fifteen minute walk home anymore.  I’m not even a fifteen minute drive home anymore. 

The thought of not being able to get home at night feels me with dread.

But what fills me with more dread is not having my meds. 

I guess this is sort of a simple thing, and I’m surprised that I never thought of it before, but I’ve never had to think about it before. 

I’ve always known at the beginning of the day where I will be going at the end of the day, and that place always has had my meds.

This also presupposes that I have enough of a stock of meds to do this in the first place. 

For one day and one night’s worth, I do.  But not much more than that. 

So I’ve taken an old prescription bottle, put in a day’s and a night’s worth of meds in it, and have tucked it away in a pocket of my purse, so it will be there just in case.

Hopefully this will provide me with some peace of mind, especially as we prepare for another major winter storm.    

I guess it goes to show that it’s best to hope for the best and prepare for the worst.   

Sometimes the world outside of illness is just as unpredictable as the world with illness.

Monday, January 12, 2015

Unlike Me, It’s Got Good Bones…

And I can’t wait to make it home.

That’s right.  We finally have a place of our own and I am super excited about it. 

This has been a long time coming, and hats off to my boyfriend’s dad and his dad’s girlfriend for putting up with us, and allowing us to stay for so long.

This is the first place that my boyfriend and I have gotten together, and the first time either of us has ever lived with a significant other.

So this is a big deal! 

I wanted to share a few pictures of our new place - empty.  You’ll see that the place really is a great canvas for us to make it our own, and I can’t wait to show you what it looks like once we’re all moved in.   

Given that we’re still moving and we won’t have internet for awhile, I might not be posting as much, but I’m still around, and celebrating this milestone moment in my life. 

The kitchen (we have a dishwasher):



Hallways, we have two:
  


Closets, we have six.  Completely unheard of in NYC apartment living (of which here are three):
  


Living/dining area:
  

Bedroom:
  

Bathroom:


Monday, January 5, 2015

2014: Year In Review

This year, more than ever, was full of highs and lows. 

A lot happened, but the most significant thing that happened this year is that my dad died suddenly and tragically as a result of massive flooding in Michigan:

-         Things We Lost In The Flood

-         My New “New Normal”

-         Debts I Can Never Repay

I started writing letters to my dad:

-         Dear Dad #1

-         Dear Dad #2

I had some amazing opportunities come my way…

I got to talk about issues of chronic illness in higher education in new venues:



I went to conferences:



I was quoted in a major magazine:


My blog was named one of the best lupus blogs:

-         Healthline Best Of…

I started a job as a patient advocate in a hospital, and in general, struggled with balance:

-         Something’s Gotta Give



And of course, the ever-present insurance and doctor woes:




Of course, this isn’t all of the posts I wrote in 2014, and I’m leaving some good ones out, but I looked for major themes and that’s what I included here.

Feel free to go through all 47 of them, if you really want to.

And don’t forget to see what I’ve written at other sites (the links below are directly to my pieces), many posts of which include similar themes to the ones on my personal blog:

-         CreakyJoints

-         HealthCentral RA

-         RheumatoidArthritis.net

*****

Every year, I also share the books I’ve read over the past year. 

This year, I really hit a slump when my dad died, so I didn’t have the chance to read as much as I usually do.  So if you’re curious, here’s what I’ve read:

1.       “Philomena” by Martin Sixsmith (NF)

2.      “Chronic Resilience” by Danea Horn (NF)*

3.      “The Sky Is Everywhere” by Jandy Nelson (F)

4.      “Illness as Metaphor and AIDS and Its Metaphors” by Susan Sontag (NF)*^

5.      “Intoxicated By My Illness” by Anatole Broyard (NF)*^

6.      “The Diving Bell and the Butterfly” by Jean-Dominique Bauby (NF)*^

7.      “Stitches” by David Small (NF)*^

8.     “The First Phone Call From Heaven” by Mitch Albom (F)

9.      “Mom’s Cancer” by Brian Fies (NF)*^

10.  “First Love” by James Patterson (and Emily Raymond) (F)

11.   “The Widow’s Guide to Sex and Dating” by Carol Radziwell (F)

12.  “Autobiography of a Face” by Lucy Grealy (NF)*^

13.  “The Spirit Catches You and You Fall Down” by Anne Fadiman (NF)*^

14.  “NYPD RED 2” by James Patterson (and Marshall Karp) (F)

15.   “The Cancer Journals” by Audre Lord (NF)*^

16.  “The Autobiography of Vivian” by Vivian Livingston (F)

17.   “Vivian Lives” by Vivian Livingston (F)

18.  “Unlucky 13” by James Patterson (and Maxine Paetro) (F)

19.  “The Big Girls” by Susanna Moore (F)

20.  “Wonder” by R.J. Palacio (F)*

21.  “The Fault In Our Stars” by John Green (F)* (I re-read this after I saw the movie, which I must say was a very good adaptation from the book, and one of the saddest movies I have ever seen)

22. “Vivian: The ‘V’ Spot” by Vivian Livingston (F)

23.  “We Are Water” by Wally Lamb (F)

24. “Invisible” by James Patterson (and David Ellis) (F)

25.  “Happens Every Day” by Isabel Gillies (NF)

26. “A Year and Six Seconds” by Isabel Gillies (NF)

27.  “This Star Won’t Go Out” by Esther Earl (NF)*

28. “Night Film” by Marisha Pessl (F)

29. “Conducting Research Literature Reviews” by Arlene Fink (NF)^

30. “The Nine” by Jeffrey Toobin (NF)^

31.  “Transforming Traumatic Grief” by Courtney Armstrong (NF)

32.  “Footprints of Courage” by Jan Jenkins (NF)

33. “Burn” by James Patterson (and Michael Ledwidge) (NF)

34. “Laughing At My Nightmare” by Shane Burcaw (NF)**

35.  “Lights, Camera, Lupus” by Amanda Rupley (NF)**

36. “Designing and Managing Programs” by Peter Kettner, Robert Moroney, and Lawrence Martin (NF)^

37.  “The Death of Bees” by Lisa O’Donnell (F)

(F) – Fiction
(NF) – Non-fiction

* Books specifically of interest to chronically ill readers

^ Academic books/books for school/my research/dissertation