Friday, November 21, 2014

Dear Dad (#1)

I’ve decided to write a series of letters to my dad and felt like I wanted to share them here as I hope it will bring clarity, not only for me, but also for those of you who have followed me on this journey. 

Dear Dad,

It has been three months since you’ve been gone, and I’d like to say that it has gotten easier, but it hasn’t.  I miss you more with every passing day.  And while I’m excited to be going home to Michigan for Thanksgiving, it won’t be the same without you.  And I will acutely feel your absence and the fact that, that is never going to change.

I’ve decided to write some letters to you and post them on my blog when I feel like I need to share what’s going on in my life.

You’d be amazed by all of the kindness and compassion that has been shown to us over the last few months, even from strangers, as those that knew you try to grapple with your loss and what it means for our lives going forward. 

I’ve been working on a project for you, and I think you’d be really proud.  I’m putting the letter writing skills you taught me to good use.  That’s all I can say about it right now, but I do hope to share more about it when appropriate. 

I try to hide my pain, but a world without you in it doesn’t seem right.  I know we didn’t talk on the phone a lot, but now that you’re gone, I find myself wanting to talk to you more and more, and wish I had done a better job of cultivating that part of our relationship while you were alive.    

I was in Boston this weekend for a blogging thing, and I cried the hardest I have for you in a long time.  It took me by surprise.  I’m not sure what brought it on, other than the fact that the project I’m working on has forced me to relive the details of your death over and over again.  Some days are okay, and some days are harder. 

Mom made Molly and I pick out something from a jewelry box I never even knew you had.  I picked a cool ring that is square and very geometric.  I wear it every day, and in a weird way, it makes me feel more connected to you.

I’ve gotten so many compliments on the ring, and I proudly tell people that it was my dad’s.  I never realized how small your fingers were because the ring actually fits me fine.  I don’t want to be a downer, but it’s hard not to tell people that you died and that’s why I have the ring.  I’d much, much, much rather have you here than have one of your rings, but every time I look at it, it’s a reminder of all of the good you brought to my life, and the fact that you will always be with me. 

There’s a lot I haven’t said, but it’s important that the world know what happened to you.  It’s important that you know that I am fighting for you, and that I won’t stop fighting for you until things change.  I don’t want another family to go through what we went through.  And I hope I can see this through.    

I love you daddy,


Wednesday, November 19, 2014

Adventures In Boston And At The American College Of Rheumatology (ACR) Conference 2014*

My original plan was to write two separate posts about my weekend in Boston, one about the Joint Decisions Empowerment Summit, and the other about my experience at The American College of Rheumatology (ACR) conference.  But I decided to combine these two things into one long post so I didn’t have one that was profoundly positive and one that was profoundly negative.

I arrived in Boston on Friday night.  I had a few minutes to settle in before attending a welcome dinner for members of the Janssen Biotech and CreakyJoints teams, and the patient bloggers.  It was amazing to see the friendly faces of those I have met in person before, including Hurt Blogger Britt, Inflamed Angela, Cathy Kramer of The Life and Adventures of Catepoo, and Spoonless Mama Rachelle; and new faces but definitely not strangers Carla of Carla’s Corner, Wren of Rheumablog, RA Guy, All Flared Up Amanda, Titanium Triathlete Dina Neils, and Mariah Leach of From This Point. Forward.

On Saturday, most of what we did was share our patient stories.  While we all know each other via our blogs, being together in person and actually talking was incredibly powerful and uplifting.  I was so lucky to be in the company of so many amazing, amazing people.  We also got to hear the amazing story of Tina Wesson, best known for winning the second season of Survivor, who also has RA. 

It’s events like these that uplift me, inspire me, and inject positivity, enthusiasm, and the sense of family and community in living life with RA. 

Sunday, was more business than personal.  We gave a lot of feedback about the Joint Decisions webinars, which was the collaborative effort of CreakyJoints and Janssen.  We also had the opportunity on Sunday to go to ACR.    

I have to admit that when I was told I would have the opportunity to go to ACR, I was more than a little excited.  Call me a dork, but I have been wanting to attend since I first got sick.

I had high hopes for what would be in store.

I only had a few hours before my flight, but I was grateful to have the opportunity to check it out and see what it was all about. 

I really only made it through the area where the pharmaceutical companies are set up.  To say that they each have their own booth is an understatement.  They have these visually and technologically advanced spaces that can only be described as show pieces.  Most booths had plush carpet and elaborate little cafes and sitting areas inside. 

But that’s where the glitz and glamour ended.

I happened to wear my “I Am The Face of Arthritis” T-shirt.  I love this shirt and would wear it all the time if I could. 

But within  two minutes of entering the convention center, I felt like something was up.  I was being stared at and given dirty looks.  I asked somebody I was with if I was crazy to feel like people were staring at me, and she agreed that it was definitely happening, and often not very subtly, I might add. 

I may have RA, but I am not blind.  Hello all you people, I see you staring at me. 

I was very taken aback by this response.  Why are you in rheumatology if you can’t handle the realities of this disease?  Maybe most of the people I encountered were researchers with little patient contact, at least I hope that’s the case.  Because otherwise, I really don’t understand. 

And unfortunately, the odd behavior didn’t stop at dirty looks. 

The minute we mentioned we were patients and bloggers, people didn’t know what to do.  One woman turned around and walked away without saying a word.  Some people wanted to know what a blogger was.  Not smart because if you knew what a blogger was, you would know that I would write about and share your rudeness with the world. 

I understand that in the capacity the pharma companies were in at ACR, they are concerned with being accused of trying to sell drugs directly to patients, which is a big no no.  But, it doesn’t mean that they have to be rude and ignore us.  You can welcome us to ACR. 

I’m sorry people, but let’s be real.  Us patients help you pay your bills and keep your families fed.  You might want to be nice to us.

First and foremost, ACR is an academic conference.  That was made abundantly clear.   But if “patient” truly is a dirty word at ACR, than the priority of who is being served needs to change. 

To be fair, one booth was very friendly to us.

Here are a few selective live tweets from ACR:

And the members of Janssen Biotech who were present and  hosted the Joint Decisions Empowerment Summit in conjunction with CreakyJoints, were amazing.  They treated us like celebrities, really listened to our experiences and feedback, and pulled out all the stops for us while we were in Boston. 

In finding out that ACR is pretty not patient-friendly, made the rest of my Boston trip so much better because of how amazing it was. 

I’ll be the first to admit that I only got a small glimpse of what ACR is all about, but what little experience I did have, really didn’t meet my expectations. 

I’m sure that in writing this post, I will probably end up on the ACR blacklist and will never have the opportunity to attend again.

And of course, illness didn’t stop there.  I got to the airport to catch a plane to New York, and was told by TSA that I was moving too slow.  Really?  Do you see what my shirt says?  Learn to read and then tell me I move to slow.  When I got to the other side of the security checkpoint, I feverishly grabbed my belongings, not wanting to be rebuked a second time for my speed or lack thereof.  And the security guard on the other side of the checkpoint told me to take my time to make sure I didn’t forget anything.  Come on government employees, pick a side.  I’m considering looking into TSA-pre for the simple fact that I won’t have to go through the whole thing with taking my coat and shoes off, taking my laptop and toiletries out of my bag, and then having to put it all back together again.   

Overall, I will say that I suspect that some of us bloggers don’t get out much, considering the antics that occur when we’re together, including finding a million and one ways to screw with the cardboard cutout of Matt Iseman. 

Aside from ACR and TSA – see, nothing good can come of abbreviated organization names – I truly had the most amazing time with my fellow RA bloggers.  Old friendships were strengthened and new friendships were forged.  And I’m still standing, despite the dirty looks and slow comments. 

I know what you're thinking.  Way to keep it classy, Leslie.  But I am keeping it real.  This goes out to lupus, RA, ACR, anyone that's ever doubted me because of my illnesses, and whoever keeps calling my cellphone and asking for my dead dad.  

* Janssen Biotech paid for my travel arrangements to Boston for the Joint Decisions Empowerment Summit and my attendance at ACR,  however, the views and opinions expressed here are my own.  

Wednesday, November 12, 2014

On Becoming A Professional Patient

Lately something I am really struggling with is balancing blog commitments with my work and school commitments.

So many amazing opportunities have come my way in the last year and a half, as far as my blog is concerned, but it is hard to keep that momentum going; I’ve had the opportunity to attend, most recently, Stanford Medicine X, the ePatient Connections conference, and a Creaky Joints meeting.  This weekend I will be attending a meet-up at the American College of Rheumatology (ACR) annual meeting. 

Now that I’m working part-time – four days a week – and going to school one day a week – I am exhausted all the time.  This means I do not have the time or energy to work out, or do much else of anything.  I’m lucky on nights where I don’t fall asleep on the couch before 9:30 p.m.

I know many people with chronic illnesses that are self-employed.  And I certainly get the flexibility that it provides.  However, it also means that you are responsible for finding and paying for health insurance, it may mean that you do not have a steady or consistent income, and you may not have other perks that a more traditional job might provide. 

On the other hand, self-employment allows you to take breaks throughout the day, makes it so that you do not have to call in sick every time you don’t feel good, and allows you to accommodate any other needs specific to your health condition. 

So what is the best way to deal with this?

By May, I will have two Master’s degrees and a PhD.  The thought of not working after all of that seems silly. 

But a 9-5 job is exhausting. 

Having a full-time, traditional job also means that I would have to find an employer flexible enough to allow me to take time off to attend conferences and other events, or it means having to give up those opportunities.  It also means being straightforward and realistic about my health issues and how they could potentially impact a traditional job.    

Obviously, I’m aware of how lucky I am to have this problem. 

Trust me, I know. 

My blog has sustained me these last six years, so it’s hard to imagine having to walk away just as the momentum has picked up. 

So how do you balance “real life” and blog life?  Do you think it’s possible to have a professional job as a patient/advocate and a job writing blog posts and attending conferences as a patient/advocate? 

In some ways, because of where my professional life is going, these two things are not really separate entities anymore.  But when I face the realities of what full-time work might mean, if that is sustainable as my illnesses ebb and flow, I also face the reality that I can only do so much. 

When it comes to purely social events, I’ve become really good at knowing what my limits are.  But when it comes to school, work, and blog stuff, I haven’t found that sweet spot yet, or the ability to say no to things.  As opportunities come my way, I want to embrace all of them. 

So what gives? 

How do I keep this part of my life that I’ve built from the ground up in terms of blogging, and the side of my life that I’ve worked so hard for?