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


**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,  

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.