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!

 

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,

Leslie

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...

 

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 29^th 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.