Wednesday, May 4, 2016

Blogging And Cyberbullying

I have been blogging for over eight years now.  I’ve had my fair share of negative comments and people disagreeing with me over things that I have written.  That doesn’t bother me.  Just as I have the freedom to say what I want, so do other people. 

And this has never been a problem.  Until now.

But what I have experienced over the last several months goes beyond negative comments and criticism.  These comments hit below the belt, and quite frankly, they are not true.  And they make me sick.    


I can’t imagine that anyone in the chronic illness communities I am a part of would make comments like these.  They would simply not comment or stop reading my blog.  In the eight years that I’ve been blogging, I have never received malicious comments.

I have a pretty good idea about who is making these comments because they mirror things that have been said in the past in other venues (which I have evidence of, as well).  My blog is also the only possible way that this person could get to me at this point.  And it needs to stop.  I went quietly, so it’s time for them to get over it.  It’s time for them to stop projecting their own insecurities onto me.  It’s time to grow up.  And it’s time to leave me alone.   

Because if this continues, there will be consequences.  I have already contacted Google about this, and am working on tracking the IP address to prove that the person who I think is posting these comments is indeed the person that is. 

Negative comments are one thing.  Slanderous comments that call my character into question are quite another, and this is not okay. 

Cyberbullying is real.  And I fear that as bloggers, this is something that we might all face at one time or another.  I never really imagined that anyone would post such nasty comments on my blog, but there are people in this world who thrive on trying to tear other people down.

But I won’t be torn down.  I’m fighting back, and this is the first step in that fight. 

Comments such as these are not okay under any circumstances.  And honestly, if you are going to write comments like this, at least have the courage not to stand behind the veil of anonymity.  Because you’re not really anonymous.  I know exactly who you are and I’m going to prove it. 

Cyberbullying is a crime, and is punishable by law.  So whoever is doing this, for your own sake, stop.  It’s not really worth getting in trouble over.  Worry about your own life, and let me worry about mine.    

Monday, April 25, 2016

Deeply Rooted Connections*


Last weekend, I had the opportunity to travel to Chicago to attend HealtheVoices 2016.  This year, the conference was put on by Janssen, as it was last year, but this year included the addition of Everyday Health.  The unique thing about this particular conference is that it brings together online health advocates who have a variety of health conditions. 

The theme of this year’s conference was “deeply rooted connections” and this was seemed particularly appropriate to me. 

The conference coincided with a major milestone for me.  I’ve been blogging for eight years.  That’s so crazy!  I can’t even believe it.  I wrote my first blog post on April 17, 2008.  I didn’t even really know what a blog was.  All I knew is that I felt totally alone, and confused, and I needed a way to process all that was going on.  The conference really reminded me of where I’ve come from, where I’m going, and why I do what I do. 

I was so inspired by the other amazing health advocates at the conference.  I learned about legal issues as they relate to blogging, and the importance of taking care of ourselves, avoiding compassion fatigue, while also attempting to take care of others. 

I got to see some old friends and got to make some new friends.  I love how when we all get together, we can act silly, while also understanding the difficulties that we experience living with chronic, incurable illnesses; and the impact that traveling and being in unfamiliar environments can have on our health.

I think that a conference like HealtheVoices forces us out of our comfort zone.  It makes us move beyond our own silos.  But it also reinforces that while we may have different diseases, much of our experiences that we have as chronically ill people are the same. 

One of my fellow advocates at the conference made a comment that when she was searching for support for her disease, she found it through other blogs, which she called “hope with skin on it.”  That really resonated with me.  I really hope that this blog has brought hope to others with lupus and rheumatoid arthritis, and to those with other chronic illnesses, as well.    

I started this blog eight years ago as a way to keep my family and friends updated on my complicated, ever-changing medical situation.  It was exhausting to rehash the same story over and over again.  And quite frankly, it was often easier to write about it than it was to talk about it.
 
But what started as a way to keep people updated, turned into something so much more than I could have ever imagined. 

I am so grateful for all of the amazing opportunities that have come my way as a result of this blog.  And I am so grateful for the amazing people I have met, and even more grateful to the ones I can now call my friends.  These deeply rooted connections are the most important thing that this blog has fostered, and I truly don’t know where I would be without them. 

So thank you.  Thank you to Janssen and Everyday Health for allowing me to be a part of HealtheVoices 2016.  Thank you to all of my readers who have been there along the way, who have supported me, and who have celebrated the triumphs and mourned the tragedies.  This blog would be nothing without its readers.  And it still amazes me that there are people other than my mom that read this blog.

So I’ll keep writing, even if it is not as often as I would like, and I urge you to please keep reading.  Please continue to follow my journey, and hopefully you will learn and gain something along the way.     

* Janssen paid for my travel expenses, but all of the opinions expressed here are my own.  

Thursday, April 14, 2016

Product Review: Pill Suite

Disclosure:

**I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. *

There are all kinds of pill cases on the market, and many of us with chronic illnesses that take multiple medications struggle with how best to store them.  One alternative is the Pill Suite.  The Pill Suite allows you to individually package your medications for single, one-time use. 

Basically, the system consists of a pill case that you can divide your pills into.  You then turn the funnel so that each divided section goes into its own “suite” (bag).  Once the bag is filled with the pills, you put it under the sealer, hit the button for a few seconds, and it heat seals the bag so your pills are safe and secure.  Each “suite” is one-time use only.  Once you’ve opened it, you cannot reseal it. 

The bags aren’t the best quality, and I sometimes struggled to rip them off without ripping off the part of the bag that is needed to open the bag once it is sealed.  If you do it very carefully, you can get the bag off in one piece. 

For me, personally, I can’t see using this every day.  This system is convenient if transporting medication bottles and a weekly pill organizer isn’t practical.  I guess for some people, that’s never practical and this system is perfect for those people, who may take so many medications that they don’t fit in any standard pill case.

The other issue I had is that the button on the sealer is made of very hard plastic, and even though you have to press it for just a few seconds, it’s not totally arthritis friendly.  So this is another reason why I can’t see using this all time.  But if your fingers/hands don’t give you trouble, then this really isn’t a consideration for you.        

In order to give the product a fair try, as an experiment, I doled out my pills for an entire week.  It took me probably at least three times the amount of time it would take me to dole out my pills for the week into a standard pill container.  I actually have a weekly pill organizer that I really like, but I know that there are people chronically searching for a weekly pill organizer and they never find one that they like.  So maybe a system like this is perfect for someone like that. 



I will say, it was kind of nice that all of my pills fit into a sandwich-size Ziploc bag.  It was much flatter than a normal pill case.  However, it took a bit of searching to make sure that I was picking the correctly labeled suite.  And if I would have happened to forget to take a dose, I might not have noticed as easily as when my pills are organized in a pill case. 

When traveling, I often struggle with how best to transport my meds, and this system would definitely be ideal for trips.  This system is also useful if you want to carry a “spare” set of pills with you at all times, and you want a very compact way to do that.  I can definitely see using this for travel.

You can write on the bags – best to do that when they are empty – and this allows you to customize them however you want. I needed to have two bags per day, one for morning meds and one for night meds. 

Some of you may have heard of Pill Pack, which is a system that allows you to get your pills pre-packaged for you into single serve pouches, similar to the ones that come with the Pill Suite.  If you like the idea of Pill Pack, but your pills change too frequently for you to take advantage of that, the Pill Suite is great because it’s the same concept but you can do it on your own, even when your pills change.   

Again, for me I think this is a great solution for traveling with medication.  I personally wouldn’t use it every day, but the reasons that hold for me might not hold for others.  So if you’ve been looking for an alternative to the traditional, bulky, plastic pill cases, this might be the perfect system for you. 

The Pill Suite system comes with the pill case that allows you to funnel your meds into the bags, the sealer, 400 “suites” (bags), and four AA batteries.

For more information, visit www.pillsuite.com,  





Tuesday, April 5, 2016

When A Friend Dies

A few weeks ago, I was perusing Facebook when I discovered that one of my friends from New York had passed away.  I spent the whole weekend feeling awful.  Even though I have experienced loss before, it doesn’t get easier.  It doesn’t make sense when a 42-year-old who was so full of laughter and life is brought down by a disease just eight months after she was diagnosed with it. 

This is the person who I was hired in to replace for part of the time that she was sick.  I remember getting the call that they wanted me to come back to work because she was sick.  At the time, no one was sure what was wrong with her.  At first, it seemed like an acute problem.  I went back to work thinking I would be there for a few weeks, but I ended up being there for six months, and as it turns out, she was never able to return to work.  Because ultimately, it wasn’t an acute illness.  She was diagnosed with glioblastoma, an aggressive form of brain cancer that is almost always caught at stage 4.  I know a bit about this because one of my cousins died from it.  The median survival rate at five years is 4%, pretty terrible odds regardless of how you look at it.  But this person wasn’t living in absolutes.  She truly believed that she would beat the disease, and because she believed it, I wanted to believe it, too. 

I felt a bit awkward because, while I was glad to go back to work, I didn’t like the circumstances that led to it.  In some ways, I felt guilty.  It almost made me feel like I was capitalizing on someone else’s misfortune.  But I remember when my friend heard that I had been brought back on, she was so happy for me, and she was also happy that she knew someone competent would be there in her place and she wouldn’t have to worry.  In her time of need, she was happy for me.

The last time I saw her, she was bloated from steroids and was wearing a wig to hide the hair she had lost from chemo.  But she was in good spirits and truly believed that she was going to beat it. 

In some ways, I feel a little odd sharing this because it’s not my news to share or cross to bear, but I feel compelled.  I feel compelled because this person, in the darkest time in her life, held on to something that made her have hope.  If having hope and a positive attitude could cure, she wouldn’t have died.  But that’s not how life works. 

I knew this person for just a year and a half.  I wasn’t a relative, and I wasn’t one of her friends that had been in her life for decades.   But our paths had crossed, and my life was better for having her in it.   

Because she was Jewish and funerals have to happen within 72-hours of death, I wasn’t able to go back to New York to attend the funeral.  I feel badly about that. 

As a chronically ill person, I am acutely aware of my own mortality.  I know that some people who are sick, die.  But even though I know of the possibility of death, it doesn’t make it any easier when it happens. 

This person introduced me to Stitch Fix and we helped each other decorate our apartments, my new apartment and her apartment that was newly renovated.  She was one of those people that always looked put together, but she wasn’t pretentious about it. 

She was a New York girl to the max.  But even so, we bonded.  We connected.
That accent though.  Pretty much everything you might imagine in a native New Yorker she embodied, except that she had a heart of gold and a sense of humor that was unmatched. 

I’m privileged to have been able to call this person my colleague and friend.  And I’m sad that life circumstances put me in the position of not knowing exactly how she was doing until I learned that she had died.  Sometimes, no news is good news, but sometimes it’s not. 

I’m not sharing this because I want sympathy, and when I shared it on Facebook and people sent their condolences to me, I felt like I didn’t deserve it.  This wasn’t about me; it was about her and what a wonderful person she was.   

I hope she knew how many lives she touched, and that everyone she came in contact with was better for having known her, if only for a brief time. 

Rest in Peace, Deb!  Thanks for being one of a few good memories I have from New York. 

Tuesday, March 22, 2016

Moving Forward And Falling Behind

Sometimes my life feels like I’m in a constant state of taking two steps forward and one step back.  And maybe I am.

Just a few months ago, my whole world fell apart for the third time.  The first time was getting sick.  The second time was my dad dying.  And the third was that I lost my job, my boyfriend and I parted ways, and I moved back to Michigan, all in the span of less than a month.  I had no job, no man, no car or driver’s license, no place of my own.  Thankfully, my family and friends have been there for me, but there’s only so much they can do.  Everything else falls on me.    

Oddly, though, my boyfriend and I breaking up didn’t gut me.  At one time, it would have.  It was more everything happening all at once.  I am still struggling with it, to be sure, but I am not a depressed blob of a person that is unable to function on my own.  And I think this is because I have suffered far more horrible losses. 

Like when my dad died almost two years ago.  Or like the friend that I recently lost to cancer.  Losing someone somewhat voluntarily (i.e. a breakup) is so much different than losing someone in a way that one day they are there and the next they are gone forever.  Because in reality, if I really felt compelled, I could contact my ex-boyfriend, or if he felt compelled, he could contact me.  But I will never have another conversation with my dad.  I can’t call him and talk to him, no matter how much I want to.    

And as I think back to my ex-boyfriend and I, I don’t think I lost him when we broke up.  I didn’t lose him then, he was already gone.    

I’m feeling really frustrated lately that I always have to be the bigger person.  Even when I have been wronged, I have to be the one to act like everything is okay.  I shouldn’t have to be forced to break bread with people that I can’t stand to be around.  I know that life is too short to hold grudges, but sometimes people don’t just get along.  So while part of me wants to take the high road, part of me just wants to lay low, protect myself, and forget about the rest. 

So my life is, albeit slowly, moving forward.

Now, I have a job that I really enjoy.  I am working on driving.  I am in the preliminary stages of looking for an apartment.

And yet, I want more.

Several of my close friends are having babies, and several of my chronic illness blogger peeps are also having babies.  So I’ll admit, I’m kind of jealous. 

In my last relationship, I think that one way I went wrong is that in the back of my mind, I always had a timeline.  So if I was 26 when we met and we date for two years, and then we are engaged for a year, and then we are married for a year, and then we spend a year trying to get pregnant, and then we have a baby…And then the fear becomes reality because now I’m 30 and single.  I’m 30 and totally not where I want to be. 

But I’m not ready to date again.  Right now, of everything I have to do, it’s honestly the last thing on my list.  I don’t want to be alone forever, and that’s definitely a fear that I have.  But I also need some time to get back to myself.  I need to be totally self-sufficient again before I can consider relying on someone else.   

I don’t always want to be a person who wishes for a life that they don’t have.  I just want to be happy.  And I know that before someone else can make me happy, I need to make my own happy.  So that’s what I’m working on right now.  Making my own happy.

And of course, chronic illness fits into this.  I’ve been working on some diet changes, and trying to learn how to balance my first real full-time job with having lupus and RA.  And I haven’t actually disclosed to most of my coworkers that I am sick.  So that’s something else I have to work on.

There’s a lot I have to work on.  And I’m trying my best to see the forest through the trees.  I’m trying to convince myself that I have time, even though I sometimes worry that I don’t.  I’m trying to remain optimistic, and to tell myself that just because I’m sick, doesn’t mean I can’t have the life I want.  

Wednesday, March 2, 2016

CVS Pharmacy, We Have A Problem

Dear CVS,

I recently had a very frustrating and disconcerting experience at the pharmacy at store #8106.

On Sunday, I called in three prescriptions for refill.  When my mom went and picked them up on Monday, there were only two.  I assumed that I must have accidentally forgotten to call the third one in, so on Monday night, I called in the missing prescription (again!). On Tuesday, when I went to pick it up, I was told there was nothing ready for me. 

I was then told that my insurance was refusing to cover it and that is why it hadn’t been filled.   I agreed to pay for it out-of-pocket because as of Tuesday, I was out of the medication. 

Then, I was told that they would not be able to fill it right away and I would have to come back two and a half hours later. 

I left CVS and called my insurance company asking for an explanation as to why they wouldn’t cover it.  Because it had been covered the month before by a lesser insurance, they decided to give me an override and will cover the medication for a year.  They called the pharmacy and informed them of that.  I thought that’s where the problem ended.  But I was wrong.    

When I went back to CVS, they went to get the prescription for me and they couldn’t find it.  They knew they had filled it.  After 10 minutes, they finally decided to fill it (again!).  And imagine, this only took about five minutes, so it is unclear to me why it took them over two hours to do the same thing the first time. 

As I’ve continued to stew about the incident and the incompetence of the staff, I have come upon a greater concern.  Did someone else end up with my medication?  Has a violation of HIPAA occurred?  The prescription that they claim to have filled was not found while I was in the store, and it’s unclear whether it was found at all. 

I have experienced nothing but problems with this particular pharmacy and its staff.  Right now, I know I will be pulling my prescriptions from this location and am still trying to decided whether I will take my prescriptions to another CVS equidistant to my house, or will take them to a different pharmacy altogether.

Rarely have I experienced such incompetence at a pharmacy, and I am chronically ill, so I have had a lot of experience with pharmacies.  And never before have I been concerned that my protected health information has been compromised.  This is totally unacceptable. 

I want CVS to launch a full investigation into this matter, and I need to know exactly what happened to the prescription that was supposedly filled and then went missing. 

Sincerely,

Leslie Rott

Thursday, February 25, 2016

I Got A Job!

Well, the title of this post says it all, doesn’t it?

Finally, a piece of good news!

After struggling with finding a job and all of the other things that have been happening over the last few months, a big piece of the puzzle has fallen into place.

I got a job at a company that does long-term homecare.  I will be a staffing coordinator and client liaison, managing patient complaints.

I am really excited about the prospect of being able to help patients, and about being the main person in charge of handling patient complaints.  I also get to create the client satisfaction survey and manage that process, as well.   

While I enjoyed my hospital job, a change of scenery was definitely in order, so I am excited to apply my skills in a new environment, especially an environment that prides itself on being “patient centered”.  

For me, since my boyfriend and I broke up and I moved back to Michigan, I’ve realized there’s a lot of myself that I have to work on – getting a job, getting a driver’s license, buying a car, and getting an apartment.  That’s a lot.  And there’s only so much of myself that I can work on at one time.  So thankfully a big piece of my puzzle has been filled.

I didn’t tell anyone about the interview.  I have found that in the past, when I talk about a job before I get it, I don’t end up getting it.  Call me superstitious, but I didn’t let anyone know until I had been offered the job.  And I’m beginning to think that this is what I am going to do with relationships, too.  Maybe I won’t make it Facebook official until I’m engaged.  Things just seem to work out better that way – and by that, I mean jobs, since I haven’t been engaged before.

While I’m so excited about my new job and the freedom I’m going to have in taking a position that no one has ever been explicitly hired to do before, I’m also feeling a bit worried about my non-work life. 

In a way, I feel like I’m cheating on my blogging side.  I want and need a full-time job.  But I also have this other side of me, as well.  Balancing being a personal and professional patient advocate is hard.

This doesn’t mean I won’t be able to attend things anymore.  Because I definitely plan to do that as much as possible.  But it means that I am balancing an 8:30-5 job, am pretty tired after work and on the weekends, so it’s an adjustment, but an adjustment that in many ways, I am happy to be making. 

I have felt like my life has been pretty out of control, and that there are so many moving pieces.  It’s hard to experience so much change and remain adaptable.  The more things change, the more they stay the same?  I’m not so sure about that. 

But I am sure that this is a great move for me and a very exciting time, and I just hope that I can be amazing at my job and remain relevant in the chronic illness online community.    

Thursday, February 11, 2016

Chronic Illness Burnout: It’s Real And I’m Feeling It

I’d like to think that I take fairly good care of myself.  But moving from Michigan to New York, and from New York back to Michigan in two and a half years, and having to find a whole new cadre of doctors (twice!), has made me realize that I’ve been pretty delinquent.

I haven’t been to the eye doctor in about three years, and I’m supposed to go yearly because of the potential for retinal toxicity caused by quinacrine.  I haven’t had an annual gyno exam in almost two years, and I can’t remember the last time I had a legit physical. 

How did this happen?  And how does this constitute taking care of myself?  There are two reasons for why concentrating on my health has run amok. 

The first is that after five years of dealing with trying to get my illnesses under control, since I have had some control over the past few years, it all goes out the window.

My symptoms have evolved.  I experience a lot of fatigue, I have sores in my nose and mouth nearly constantly, my back is in constant pain, and I am battling severe dry eye.  I know that these are clear signs of some illness activity.  I know I should be dealing with them.  But I’m tired.

There’s only so much about myself that I can work on at any given time, and I guess given recent (and not so recent) events, my health hasn’t been at the top of my list.

I think that when your body is no longer constantly going haywire, it’s easy to become complacent.  It’s easy to pretend that you are healthy, or at least healthier than you’ve felt in a long time. 

This is really hard to admit.  Because my health should always be my top priority.  And recently, it just hasn’t been. 

The second is that my insurance situation has been somewhat sketchy and not continuous for the last few years, given school, having to find my own insurance because I was working a part-time job that did not offer benefits, navigating the marketplace, dealing with an insurance company going under, and then being unemployed.

I elected a PCP that my mom had seen years ago, and then when I called to make an appointment, I was told the doctor was not accepting any new patients.  I made an appointment with another doctor in the practice and called my insurance company to make that person my PCP.  Then, two hours before my appointment, they called and cancelled it.  Not only that, but they first told me the appointment was at 11:15 a.m., then 11:30 a.m., and when they called to cancel, they said it was 11:45 a.m.  It’s funny how as patients we are expected to cancel an appointment at least 24 hours in advance 0r risk having to pay for it, but doctors can cancel appointments just a few hours before with no penalty.  Needless to say, I decided that I wanted nothing to do with this particular office.  The demeanor of a doctor’s office staff can really make or break building a relationship with a doctor, even before you’ve even seen the doctor.

I then called a bunch of other doctors, none of which returned my calls.  Then I was looking at my grandmother’s doctor who was said not to be accepting new patients.  I decided to call anyway on the off chance that they were accepting new patients. 

I’ve also discovered that the system for my current insurance for picking a doctor is completely inaccurate.  They list doctors who aren’t accepting new patients as accepting new patients.  And doctors that are accepting new patients they have down as not accepting new patients.  So basically, this means that I have to call every office myself to make sure the information is accurate.   

Well, it ends up that my grandmother’s doctor is accepting new patients and I was able to get in to see him.  And he was amazing!  A new patient appointment consisted of sitting and talking with me about me medical history for almost forty-five minutes.  That was it.  He had me schedule a full physical for a later date.  But I was super impressed by how he just listened and asked questions.  He even brought up issues that I may face in pregnancy. 

He was impressed with how much of my medical history I knew off the top of my head, like being able to rattle off every medication I have ever been on to treat my lupus and RA.  I think it’s funny because I don’t know any other way to be.  I wouldn’t be on my game if I didn’t know these things. 

This experience reinforces for me why I am a patient advocate.  As stressful and frustrating as it has been for me to find a PCP within the constraints of my insurance and individual doctors’ offices rules and regulations, I imagine that many patients would simply give up.  But I can’t afford to give up.    

I’m making my health my top priority again. 

Now off to find a new rheumatologist…

My Story On HealthCentral

I’m so excited to share with you My Story, which is being featured on HealthCentral.

You can view the multimedia story here:



Thursday, February 4, 2016

Am I Enough?

Sometimes I feel down about myself.  In the past, a lot of it was related to being sick.  But as other things have happened in my life, there are other reasons why I feel down.

When you’re applying for jobs, which can be a demoralizing experience, it can really hurt your self-esteem, and the struggle has definitely hurt mine.  I try really hard to stay positive, but when it seems like a lot is going wrong in your life, it’s hard.

After spending two and a half years in New York, it sort of feels like a failure that I couldn’t make it work.  Even though I tried really hard.  Being back in Michigan is where I know I need to be.  For some people, New York is the center of the universe.  It’s the only place that some people can imagine being.  But it just wasn’t for me. 

It’s easy to listen to the negative comments and let those be the ones that keep coming up in our minds, even when there are positive ones, too.  I don’t know why it’s so easy to focus on the haters when it is often hard to listen to compliments and praise. 

This includes blogging.  I love getting positive comments about posts.  But sometimes the comments that stick out the most are the ones that tell me that I’m not doing something right. 

I’ve been struggling.  I’ve had a lot of change in my life over the last few months and years.  And while I am lucky enough to be surrounded by love and support, some of what resounds in my mind are the comments from those who aren’t coming from a place of love and support. 

And this hurts, even when I know that the comments have no merit and are completely untrue. 

And sometimes, when you rely on others to build you up, and they don’t, you’re only left with the negative.

But having gone through everything that I have, and being able to come out on the other side, I know that I am better and stronger than some people make me out to be. 

And I need to surround myself with the people that love and support me, and try and squelch the negative as much as I can. 

The thing that’s important to know about me is that I speak my truth and I own it, and I’m sorry if that truth is not acceptable to others.  But it’s mine, and I don’t shy away from it.  Sometimes the truth hurts.  And sometimes, the truth can set you free. 

So as I sit here grappling with my truth, I also grapple with the question of Am I Enough?

I’m beginning to realize that just because I wasn’t enough for one person, doesn’t mean I’m not enough for anyone. 

And if you’re grappling with whether or not you are enough because of the struggles you are coping with, you are.  You have to believe that.  You cannot let the negative win over the positive. 

I’m trying really hard to work on this myself. 

So the answer is:

Yes, I am enough.


Monday, January 25, 2016

On Building Playgrounds And Baking 1,000 Cupcakes

I recently saw an Orencia commercial (see end of post to watch commercial) that stopped me in my tracks because it is so different from other RA medication commercials. 

The commercial portrays a woman doing everyday things, like turning a doorknob and walking up stairs. 

And I have to wonder.  Is pharma starting to listen to us?

I can’t tell you how many times I’ve sat in meetings with pharma and the continual  trope from me and other patients is that the commercials don’t represent us and portray the disease in a way that makes the general public not understand the significance of the disease. 

One thing I don’t know is whether the people featured in the commercial actually have RA.  Many pharma companies say they cannot use real patients.  However, Gilenya, a drug that treats multiple sclerosis has done just that and features real patients who are on the medication, including my Stanford Medicine X friend Jamia.

This is definitely a step in the right direction.  This is the sea change that we need.  And it proves that if we raise our voices loud enough and we complain often enough, and we speak as a collective voice, we can get things done.  Change is possible. 

And maybe this seems like a really basic or obvious change.  But I think on the part of pharma, they don’t see it that way.  They have fundamentally changed how they talk about RA and what their medications are realistically able to do.

The commercials out there that show patients building playgrounds also create unrealistic expectations on the part of patients.  And this perpetuates the discourse that patients fail medications, when it reality, medications fail patients.  By showing situations that the majority of patients won’t be able to do on a good day not only makes patients expect that, that is how the medication will work for them, but that when they don’t experience it, that they have failed in some way because it should work for them the way the commercial shows.

I won’t call out here the specific medication whose commercials seemed to offend more than others, because you probably know which one I am talking about.  But I’ve always resented them.  I always wanted to throw my TV out the window when the commercials came on and someone was building a playground or baking 1,000 cupcakes, things that I probably wouldn’t have done pre-RA.  The commercials always left a bad taste in my mouth and felt like false advertising. 

Maybe there’s some bitterness that the medication didn’t work for me and my experience with it was pretty dismal.  But I wasn’t the only one.  And that has bothered me a lot, too.  When patients are traumatized by painful auto injectors, and patients have trouble accessing pre-filled syringes, which still burn, but not as bad as the auto injector, someone should be listening to that, and finding a way to change it.

So maybe this goes beyond commercials.  It speaks to patients having a voice when it comes to the medications that are on the market to treat us, and even medications before they even come to market.  It speaks to patient centricity, and what that means and doesn’t.  Patient centricity means involving patients from go.  It means bringing them into the conversation and keeping them around long enough to make it matter.  It doesn’t mean bringing just a few patients into the fold.  It means actually hiring patients to work for pharma. 

Just because you can’t build a playground or bake 1,000 cupcakes, doesn’t mean that you don’t have a voice.  Every patient matters, regardless of illness severity, and whether medications work for you or not.  Sometimes opening a jar or a door, of climbing a few stairs, is the best we can do.  If medications promise more than that, then that is what they should deliver.  We all have to be realistic.  Granted, climbing stairs and opening jars isn’t sexy, but that’s the reality for so many of us with RA.  

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Tuesday, January 5, 2016

2015: Year In Review

I contemplated not doing a year in review post this year, considering the way the year ended.  I really don’t want to dwell on the past, and what has happened recently has been incredibly painful.  But I also want to see exactly where I’ve been in 2015, in the hope of figuring out where I want to go in 2016.

2015 was the first full year without my dad, and I really opened up around the details surrounding his death:





I had some highs and lows health-wise, including getting a cortisone shot in my hip that changed my life for the better, and struggling with medication and insurance woes:





My relationship took a positive turn (we got our first place together), and then a very negative one (we broke up):




I got to travel a lot, gave an Ignite Talk at Stanford Medicine X, and did a lot of advocacy work, which were some of my happiest and proudest moments this year:




And I struggled with starting my career and finding the way back to myself:





It’s crazy the difference a year makes.  At the beginning of 2015, my boyfriend and I got our first place together.  2015 came to an end with a breakup with my boyfriend of three and a half years, and a move back to Michigan to be closer to my support system, and hopefully start a new life. 

Of course, these aren’t all of my posts from 2015, but these are the ones I felt were worth highlighting.  You can review the year on my blog if you are interested in other posts that were not included in this review post.

And, as I always do, I am sharing with you a list of the books that I read in 2015:

1.       “The Life-Changing Magic Of Tidying Up” by Marie Kondo (NF)

2.      “Fabulupus” by Jodie Nimigon-Young and Jessica Kundapur (NF)*

3.      “Common Fire” by Laurent A. Parks Daloz, Cheryl H. Keen, James P. Keen, and Sharon Daloz Parks (NF)^

4.      “Tampa” by Alissa Nutting (F)

5.      “Selena’s Secret” by Maria Celeste Arraras (NF)

6.      “On A Farther Shore” by William Souder (NF)^

7.      “The Vanishers” by Heidi Julavitz (F)

8.     “Sick Idiot” by Ashley Boynes-Shuck (NF)*

9.      “The Writing on the Wall” by Regina Holliday (NF)*

10.  “To Selena, With Love” by Chris Perez (NF)

11.   “The Perfect Letter” by Chris Harrison (F)

12.  “300 Sandwiches” by Stephanie Smith (NF)

13.  “League of Mortals” by Duncan Cross (F)*

14.  “United Breaks Guitars” by Dave Carroll (NF)

15.   “Grey” by E.L. James (F)

16.  “Afraid of the Dark” by Tom Henderson (NF)

17.   “14th Deadly Sin” by James Patterson (F)

18.  “Suffering The Silence” by Allie Cashel (NF)*

19.  “Being Mortal” by Atul Gawande (NF)*

20.  “On grief and Grieving” by Elisabeth Kubler-Ross and David Kessler (NF)

21.  “The Day the World Came to Town” by Jim DeFede (NF)

22.  “Girl In Glass” by Deana Fei (NF)*

23. “Wide Awake And Dreaming” by Julie Flygare (NF)*

24. “NYPD Red 3” by James Patterson and Marshall Karp (F)

25.  “Why I Wore Lipstick To My Mastectomy” by Geralyn Lucas (NF)*

26. “The Murder House” by James Patterson and (F)

27.  “The Magic Strings of Frankie Presto” by Mitch Albom (F)

28. “Still Alice” by Lisa Genova (F)*

29. “Inside the O’Briens” by Lisa Genova (F)*

(F) – Fiction
(NF) – Non-fiction

* Books specifically of interest to chronically ill readers
^ Academic books/books for school/my research