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:



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



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 

Tuesday, December 23, 2014

Happy Holidays 2014

This year was a difficult one, and I'm hoping for a better year next year.  Wishing you and yours a happy and healthy holiday season.  See you all in 2015!


Wednesday, December 17, 2014

Dear Dad (#2)

Dear Dad,

Today is your birthday.  You would have been 63.  I'm not really sure how I feel about this day or how I am supposed to feel.  I miss you...a lot...that's for sure.

Thanksgiving was better than I thought it would be.  Except that you weren't there, which was huge.  But it was the first time that I've been home since you died.  And I had no idea what to expect.

It's weird because I often caught myself thinking that you were at work or sleeping in the next room.  But I had to keep reminding myself that, that wasn't the case.  That you're gone.  Permanently.

And that still hurts terribly.

It's been a little bit more than a year since Zaydie died.  So when I was home for Thanksgivng, we had the unveiling for his stone.  I didn't want to go because I didn't want to face the reality that you died, too.

We went, and it was fine.  Until I walked to where you're buried.  Around the mound of dirt, they've put a concrete barrier.  And it's still so new that it isn't flush to the ground.  It was creepy.  It's still too fresh and new.  Maybe it was too soon for me to go back there.

I don't know how I was supposed to feel being there.  Connected to you in some way?  The place I can go to "see" and visit you?  Because I didn't feel connected or comforted.  I felt empty.

I feel like it's a bad consolation prize for not having you physically around.

Things are moving forward on my project for you.  And I hope that after the New Year, I'll be able to share with you amd everyone else what has been going on.  But for now, mums the word.

Andrew and I started looking for apartments.  Yay!  And I'm sad that you won't be able to see our relationship grow and evolve.  But I'd like to think that somewhere, someway, you know.

It's hard to imagine life moving forward without you, but it has to.  We don't have a choice, or we die too.

As things start to get a little easier, we are hit with Thanksgiving or Chanukah or your birthday or some other even that you're not here for.  And it brings everything back again.

I'm not sure what else to say except that not a day goes by when I don't think about you.  And wish you were here.  And miss you.  And love you.

I love you,


Friday, December 5, 2014

Check Me Out In The Latest Edition Of Women's Health Magazine

I'm quoted in this month's issue of Women's Health Magazine, in an article on chronic pain.  You gotta love when, in writing, someone says your "feelings are backed by science."

On newsstands now...


Tuesday, December 2, 2014

When The Advocate Struggles To Advocate For Herself

I had an appointment with an immunologist a few weeks ago.  I’ve never seen an immunologist before, but I am having some problems that my rheumatologist is kind of mystified by.  So she told me that I should see an immunologist, and told me the specific doctor I should see.    

I’ve been waiting for the appointment for a couple of months.  I left work two hours early, and due to transportation issues, took a cab to get to the appointment. 

When I got to the doctor’s office, they told me they didn’t have the referral and they wouldn’t let me see the doctor without it.  I called the student health center at school.  The director, who I dealt with in regard to the referrals, was in a meeting, but the receptionist told me she would make every effort to get the message to her.

My appointment was scheduled for 4 p.m.  At 4:30 p.m., the health center director called me, apologized, and said she would fax over the referral.  To be clear, I was told on October 29th that the referral had been processed, so I’m not sure why the doctor’s office didn’t have it.

Part of the problem is the way my insurance works.  I can basically see whoever I want as long as I have a referral for it through school.  Given my complicated health situation, this basically means that I can e-mail the health center director and she will write referrals for whatever I need, especially considering that the health center doesn’t offer many of the services that I actually need. 

What this means is that my rheumatologist can tell me to see an immunologist, in this case, but because she is not associated with my school, a referral directly from her holds no weight with my insurance company. 

I was sitting with all the paper work they asked me to fill out, and someone came over to me.  She could probably tell that I was struggling to hold back tears due to frustration.  She asked the person who had been helping me if they had tried to contact my insurance company.  The woman said no, so the other woman told her to try that.  I’m not sure what that actually did.

The referral got faxed from my school and then the doctor’s office told me they have to verify it.  At 4:45 p.m., they told me that the referral has the wrong diagnostic code on it and that they can’t see me until that’s fixed, which means I won’t be seen and can’t be seen for another month.

They also told me that the doctor had to leave at exactly 5 p.m., so by the time they figured things out, there was really no time to be seen anyway. 

I sat in the office, feeling super frustrated.  I got really emotional about it.  And I wasn’t a very good advocate for myself, although I am not really sure what else I could have done.  I called the school, and I got the referral sent over.  I was led to believe that, that was all that needed to happen in order for me to be seen.  But I still didn’t get seen. 

I understand why patients get so upset and frustrated with the system.  And in my work as an advocate, I help them navigate situations just like this one.  But when it came to my own care, I couldn’t do it.  I couldn’t remain calm.  It’s not like I freaked out at anyone, but I was just a big ball of tears and emotion. 

When it’s your health, and someone is standing in your way and not willing to budge, it goes beyond frustration.  It’s not right.  A piece of paper shouldn’t define care, but it does. 

I considered asking if they would let me see the doctor if I paid out-of-pocket.  But I didn’t because I had been proactive about getting the referral.   

It would have been nice if the office would have called me a few days before the appointment, knowing that they didn’t have the referral, and knowing that they wouldn’t see me without it. 

In retrospect, I should have checked to make sure the doctor had the referral.  But I’ve never encountered a problem like this before.  I have to say, it was pretty demoralizing.  It made me feel that the doctor only cares about getting paid, and makes me wonder if I really want to get care from this person.

I contacted the health center director via email that night and she was extremely upset about the situation.  She confirmed all of my assumptions, basically for whatever reason that the doctor wasn’t really interested in doing her job.

If that wasn’t enough, I was told not to wear perfume and scented products to the appointment.  Which means that I didn’t wear deodorant all day because my deodorant is scented.  Sorry if that’s TMI, but seriously.  I couldn’t make this stuff up if I wanted to.  I don’t think my lack of deodorant had anything to do with me not being seen, though.  I hope not.   

Lessons learned:

-         Insurance rules everything.  The patient means nothing.  I really needed to see this doctor, but my health needs did not supersede bureaucratic bullshit. 

-         It’s all about money.  All anyone cares about is getting paid and making sure that there is someone out there who will pay. 

-         Always get copies of referrals so that they can’t pull this shit of saying they don’t have it.  To be fair, I have never had this problem before.

-         Apparently you have to give at least 24-hours notice if you can’t make an appointment, but a doctor’s office can cancel on  you when you should be seeing the doctor and face no negative consequences because of it.

-         I am seriously considering telling the doctor’s office that I will not pay my co-pay for the next appointment.  Technically, I’m out $70 for missed work time and the cab ride.  And because my next rheumatologist appointment is on the same day as my immunologist appointment, I’m missing an entire day of work because of that.

-         I plan to contact the patient representatives at the hospital where my doctors are, after the appointments happen, of course, because this situation is not okay.

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,