Friday, October 4, 2019

In the Clinical Trial of Life, You Are Always an N of 1 (RD Blog Week #5)

I’ve felt this for a long time, but I’m finally writing it down, because I think it’s good advice for newly diagnosed patients, and I wish someone would have told me something similar when I was first diagnosed.

Clinical trials are scary. Many patients feel they would only participate in a clinical trial if they were desperate, in a last ditch effort if no other treatments work.

But the reality is, in the clinical trial of life, you are always an N of 1.

No matter how tried and true a treatment is, no doctor can ever adequately tell you or know how you will react to a medication. Sure, by prescribing something, they may be acknowledging that the perceived benefits are greater than the perceived risks, but there is never really any way to know for sure until you’ve tried it yourself.

No two patients are alike. When you’re first diagnosed, everything feels scary and unknown. And you look for common ground, for people that are going through the same things that you are. And that’s great. It’s 100% necessary to find patients like yourself.

But again, the reality is, in the clinical trial of life, you are always an N of 1.

Having both lupus and RA, I took Humira with the acknowledgement that it could make my lupus worse. However, I never imagined that six months into treatment, I would suddenly have the worst lupus flare I had ever experienced, which left me almost completely bedbound for two weeks. When I finally realized that I couldn’t brave the storm any longer, my PCP suggested that I see my rheumatologist as it sounded to her like the flare may have been the result of Humira.

When my rheumatologist told me to get a pneumonia vaccine, I did so without question. I ended up getting cellulitis and almost lost my arm.

You are the only expert in yourself. Even when you’re body betrays you and has gone rogue, you still know your body better than anyone.

So if you approach a clinical trial the way you approach any other treatment, or vice versa, it normalizes it. It doesn’t make it as scary.

Because in the clinical trial of life, you are always an N of 1.

Thursday, October 3, 2019

We Are All Part of This Community, No Matter How We Are Doing (RD Blog Week #4)

As of late, I haven’t been blogging. It’s not so much that I haven’t had things to say as much as it has been a struggle about whether or not I should say it. I hesitate to express feelings I’ve held for quite some time. But, here goes…

I have made great friends through social media, blogging, and the chronic illness community, and I am forever grateful for that. However, I feel like so often it turns into a competition of who has it worse.

So, when I’ve been doing relatively well, I hesitate to share it. In the last two years, I’ve bought a house, gotten engaged, and gotten married. And while I know that the friends I’ve made through this community are happy for me, it’s hard to confront the larger community when so many others are struggling.

And it’s not that I don’t struggle with lupus and RA. I definitely do. It’s just that the suffering is no longer constant for me.

I’ve wanted to share everything that’s been happening, both the good and the bad, but it’s hard. It’s hard when you’re happy and want to celebrate it. It’s easier to rail against the bad stuff – medications not working, doctors not listening, struggling to stay above water when you feel like everything is closing in around you – because you know that others can relate. You’ve heard it all before, over and over again. You hear less of the good things.   

And it diminishes everyone to not allow the sun to shine through the clouds. It diminishes all of us, because we are not just these illnesses. We are wives, husbands, sisters, brothers, daughters, sons, friends, and so much more.

We are who we are, and we should never have to apologize for that, or fear that having a good day and sharing that, is going to anger those who aren’t in the same place.

I think that as a community, in order to be cohesive, we need to celebrate our triumphs and our tragedies, our highs along and our lows, whether medical or otherwise. We need to support each other, not tear each other down.

It starts with a simple question: How are you? That’s pretty basic, right? But what’s not so basic is to actually listen to the answer to the question, and to enthusiastically respond, regardless of what the other person’s response is. If someone’s doing well, be their cheerleader. If someone’s struggling, encourage them.

We’re stronger together. We’re stronger when we display a unified front, when we fight as sisters and brothers in the struggle, no matter what stage of disease we are in. We must acknowledge our shared experience. Our shared experience is what brought us together in the first place, and our shared experience is what will keep the community going.

In a world filled with so much divisiveness and strife, we need to be part of the solution rather than part of the problem.

The sooner we stop fighting with each other, and start fighting for each other, the better off we will be.

Tuesday, October 1, 2019

Looking Back On 12+ Years of Chronic Illness (RD Blog Week #2)

When I was diagnosed with lupus and RA 12 years ago, I thought my life was over. I was in my first year of graduate school. Professors and my doctors told me that I should drop out of school. I didn’t listen. But I’d be lying if I said that having lupus and RA didn’t change things for me. They definitely did.

Deciding that I didn’t want an academic career was a difficult choice, but one that I made. I knew I wouldn’t be happy or competitive in that kind of environment. It shouldn’t be that way, but at least when I was preparing to enter academia, it was.

Getting a second master’s degree in health advocacy  was another choice that I made. Looking back, I don’t regret anything (except my student loans), but I do wonder if things would be different, or if I’d feel the same way I do now.

Getting my first full time job after being a student until the age of 30, buying a house, getting engaged, getting married, and considering starting a family, are honestly things I couldn’t have imagined 12 years ago, when my life seemed to be taken over by lupus and RA. All things chronic illness.

Some things in my life have clearly settled, but in terms of what I want out of a career hasn’t. I’m trying to figure out where I belong and where my skills are best suited. I’m doing my best at maintaining a full-time job, but I’m interested in alternative careers.

I’ve worked so hard to fight my way through eight years of graduate school to not really knowing exactly where I fit in.

Honestly, when I first got sick, marriage and children were an open and unanswered question. Would I find someone who would love me despite, or in spite of, my complicated illnesses? I did. However, the jury is still out on the whole having kids thing, so that’s TBD.

At the core, I’m still me, just different. My priorities changed. And that’s how life is, even without illness.

Now, I do have a desire to have a family, so what that’s going to look like is going to be interesting. And that’s where a lot of my focus is right now. The specter of having to go off of medications that I have come to rely on, and what that will mean for my home and work life, is a huge deal. There are so many unanswered questions.

I think a lot of what having a chronic illness does is that it forces you to face unknowns that healthy people don’t necessarily have to think about.

For 12 years, my life was almost entirely consumed by chronic illness. Now it’s consumed by things that are normal for people my age; maintaining a job, exploring what else is out there, dating, engagement, marriage, children.

Obviously, chronic illness colors all of those experiences and makes most of them more difficult. But I’m no longer just a chronically ill person. I was someone’s fiancée and now I’m that person’s wife. I hope someday to become a mother.

In a way, it’s sad that chronic illness isn’t my complete focus anymore, but it’s also refreshing.

Monday, September 30, 2019

Medication Meltdown (RD Blog Week #1)

For the past five years, I have been on a combination of medications that has worked, been the most consistent, and lasted for the longest period of time since I was diagnosed with lupus and RA. I can’t explain how grateful I am for that, especially given that it is so much more difficult to find treatments that work, having multiple autoimmune diseases, and trying to find treatment regimens that don’t help one disease at the expense of the other.

But that is all about to change…

When I saw my rheumatologist a few weeks ago, he informed me that Quinacrine is no longer being manufactured due to an import stop by the Food and Drug Administration. As a result, I will no longer be able to take Quinacrine. The only other option is Hydroxychloroquine/Plaquenil, which didn’t really work for me and caused chronically elevated liver enzymes.

My rheumatologist stated that since I hadn’t been on Hydroxychloroquine/Plaquenil with Imuran before, that maybe in combination, it will work better than it did before. But then in the same conversation, my rheumatologist told me that I likely won’t be able to stay on Imuran when I want to get pregnant.

I talked to my gynecologist to confirm this, and he stated that Imuran is a Class D medication, meaning that it has been deemed not safe to use during pregnancy.

So with the Quinacrine shortage and Imuran being out for pregnancy, where does that leave me? Everything is being upended.

It feels like several years of being sick and trying to get a diagnosis, six years of trying to find a treatment that worked, and another five years of being on a treatment that worked, is going up in smoke in a matter of months. It feels like a lot of hard work for nothing.

I’ve struggled through medications working at first and then suddenly not working. I’ve dealt with unpleasant side effects that I was willing to put up with in the name of feeling okay. I’ve suffered through medications that have helped my RA only to make my lupus flare, and medications that have helped my lupus only to make my RA flare. I’ve handled medications not working at all.

And of course, this would all obviously be somewhat easier if it weren’t for the fact that I have multiple autoimmune diseases to contend with.

I know that this is a struggle that most of us with these illnesses share. But honestly, nearly 12 years after my diagnoses, I don’t really feel like the medical community knows more now than they did then.

Quinacrine is off the table. No one has a solution for that other than to take a medication that previously hadn’t worked or to suffer through without anything.

And Imuran is soon to be off the table due to wanting to get pregnant. My gynecologist said that if I can live without Imuran, I definitely should. I’m not going to risk taking it.

So I asked my gynecologist if I should prepare for the longest nine months of my life. His answer? Yes.

So there you have it. I’m back in the same place I was 12 years ago. Back then, though, no one would talk to me about pregnancy because it was “just hypothetical”. Now, at least they’re willing to have the pregnancy conversation, but I don’t really like what I’m hearing.

I don’t know what my life will be like without these medications. I can barely go a day without them before my immune system goes into overdrive. So we’ll just have to wait and see.

Tuesday, January 1, 2019

Happy 2019!!!

I know I’ve been noticeably absent from my blog in 2018 and I apologize for that. As always, life seems to get in the way.

2018 was a big year. We bought a house, and got engaged.

One of my New Year’s resolutions for 2019 is to blog more and get back on the conference circuit. I hope I can make it happen.

In the meantime, I’m still here, so please don’t forget about me.

More coming soon, I promise!

Monday, May 7, 2018

A Blip On The Radar

A routine annual Pap smear turned into a colposcopy, which turned into a laser conization, which taken together has become one of the most uncertain times of my chronic illness life.

When I first got sick, I was in a state of limbo. Doctors who were trying to figure out what was wrong with me stated “it might be nothing or you could be dying.”  It is heavy to live with the unknown.  And somehow, I thought I had experienced enough health stuff not to be surprised any more.  But my body had other plans.

And then you start hearing words and phrases that make you shudder, that truly are the stuff of nightmares:

In my head, I have always thought that the decision would be easy.  That if it was my life or having a baby, I would clearly choose my life.  But when the prospect becomes reality, it is not as easy as the times I have played the scenario out in my mind.  It is not as simple as it seems.

And thankfully, at this moment in time, it was not necessary to have to make that decision.  But it forced my fiancée and I to have some difficult conversations, in which I suggested that he get out while he can because things might get harder before they get easier.  For us, “in sickness and in health” is not a hypothetical.  It is as real as it gets.

When you’re growing up, everyone makes such a big deal about getting your period and becoming a woman and how wonderful womanhood is.  But they fail to mention - or we purposely fail to understand - that, that which makes us women, can also kill us.

It is strange because my illnesses are in a very stable place right now, and yet, my body has chosen to remind me that it is fragile, and that having a crappy immune system means being at greater risk for a lot of things, even when I feel reasonably well.  I’ve become accustomed, dare I say good, at dealing with the lupus and RA stuff.  But unrelated bodily stuff, not so much, especially things like this.  These are the things that scare me the most.  Things hiding under the surface that cannot be seen or heard until it is too late.  But I got lucky.  So I get twice as much fun per year for the next two years pending normal Paps each time.

This is the first time in a decade (since I got sick) where I’ve felt like “let’s get this over with and let me get back to my life.”  Since I got the news, it seems like it has overshadowed everything.  Like the uncertainty of not knowing this has been worse than the uncertainty that I first felt when I became chronically ill and was forced into the realization that chronic means never going away.

The reality that there’s something that could be worse than the day in and day out of lupus and RA is too much.  I can deal with the physical aspects.  Between my oral surgery in November of 2016, my foot surgery in November of 2017, and this, physically, this has been the easiest.  It’s the emotional aspect that is difficult.

Sometimes, chronic illness is a minefield of suck.  But hopefully by this time next year, I will be a married woman and this whole situation will be merely a blip on the radar.

Saturday, May 5, 2018

I’m Engaged!!!

Valentine’s Day 2018 will be a Valentine’s Day that I will always remember.

For those of you who have been reading this blog for awhile, you know that I’ve had a fair amount of relationship blunders over the past decade.

But for nearly two years, I’ve been in a relationship, and I haven’t really blogged about it.  At some point, I pledged to myself that the relationship would be the one that I didn’t really talk about publicly.  Maybe subconsciously, I knew this time was different.

So I haven’t written about the ups or the downs, or anything, really.

But on Valentine’s Day, we got engaged!!!

It was a total surprise.  I had been really upset over the holidays because I thought it was going to happen and it didn’t.  So I put it out of my mind.  I figured that if it was going to happen, it would when it was meant to.

So on February 14, 2018, my fiancée made me dinner.  Then he gave me a giant pink gift bag full of pink tissue paper.  I kept pulling tissue paper out of the bag, and when I got to the bottom of it, there was nothing in it.  I looked at him and he got down on one knee.

The rest is kind of a blur.  I think I may have blacked out a bit.  The only words that came out of my mouth were, “Are you serious?”  While I had been waiting for this for a long time, when it actually happened, it was kind of surreal. I know that we hugged for a long time, and I said “yes” when I realized I hadn’t said it yet.

The proposal was perfect.  It was just us, at home.  And he even met with my mom beforehand, which was really sweet and something that he knew was really important to me.

Right now, I’m enjoying soaking us this exciting time and plotting and planning so that we can have the perfect wedding for us.

We’re getting married May 5, 2019.

This time next year, I’ll be married!

Tuesday, April 17, 2018

A Decade Later: Reflections On A Chronic Life

On this day, 10 years ago, I started this blog.  I was just finishing my first year of graduate school, and after eight months of crazy symptoms and years of strange illnesses here and there, I was able to put a name to what was plaguing me.  And because of lupus and RA, this blog was born.

I’ve debated whether or to link to posts here, but it’s so hard to pick from them.  In the beginning, this blog was kind of unfocused.  I talked about my illnesses, but I also talked about shopping, cooking, books, and other more frivolous things.  But the more I blogged, the more focused it became.  And it has been lifeline for me to the outside world, to those who know what I’m going through (and even some who don’t).  

All I know, is that in the last 10 years, you all have seen me through the good and the bad, the highs and the lows.  There have been several serious relationships that have crashed and burned.  And then there’s the one.  You’ve seen me through the losses, of which there have been many: the loss of my cousin, my uncle, my grandpa, my dad, and my grandma.  You’ve seen me through blood work, prescriptions, injections, colonoscopies, colposcopies, oral surgery, foot surgery, and more.  You’ve celebrated my triumphs and mourned my tragedies alongside me.  And quite honestly, that’s more than I ever could have asked for and more than I deserve.  

But I made it.  I’m still standing.  After all these years.  

I can’t believe that then, I was a young twentysomething graduate student just finding my way in the world, and now I’m a thirty something; a homeowner, engaged, and working full-time.  Back then, my life and my future felt so uncertain.  And maybe now life is just as uncertain as it has always been, maybe some of the time I just handle it better.  Maybe I am stronger in the broken places.      

I worried when I first started writing that literally only my mom would read it (shout out: Hi Mom!).  But it turns out, she wasn’t the only one.  And I am so grateful for the connections I’ve made through this blog, and for the love and support over the years.  I am grateful to my readers, who have read, commented, and kept reading, and have followed my journey along the way. 

I guess I will leave you with the links to my “year in review” posts, as those probably give the best summary if you want to look back at my blog through the the years:

You’ll just have to stick around to see how the rest of 2018 goes…

With immense gratitude,

Monday, April 9, 2018

Doctors Aren’t Always Right But Some Doctors Just Want Their Money (10 Months Later)

Last June, I went to the worst rheumatologist appointment ever (Read: The Storm After Years Of Calm).  And I thought, now that I have a new rheumatologist that I like, that I had put it behind me.  But to my surprise and chagrin, a few weeks ago, I received an explanation of benefits from my insurance company stating that I owe over $300 for labs that my insurance plan isn’t paying for.

First of all, why am I getting billed for this now?  It is April of 2018 and this appointment occurred in June of 2017.  Second of all, no, just no.

I will not be taken advantage of this way, especially since after the tests were run, I found out what they were and they were totally unnecessary.  Tests were run for multiple myeloma (makes no sense), and for a doctor that didn’t seem to believe I have lupus and RA, she ran no confirmatory tests for the illnesses that I ACTUALLY HAVE (Read: I Do Have Lupus And RA After All...).

So I contacted the person who is our designated contact at the insurance company.  She proceeded to attempt to school me on what a deductible is and that mine hadn’t been met yet, hence the charges.  I calmly explained that I know what a deductible is and all of that, but that’s not what I was questioning.  I asked if I could appeal, and was told that I had 60 days from the date of service to appeal.  I asked how it was fair that I could be billed for services 10 months later but only had 60 days to appeal?  We continued to go back and forth, with her being incredibly dismissive and disrespectful to me.  I finally asked to be contacted by a supervisor.  I’m still waiting.

(Also note that since this appointment took place last year, it would have counted toward that deductible, which I met.).

I also contacted the person that administers our insurance, and was told that my best bet was to contact the provider.  I explained that in order to spare myself further mental anguish, that was definitely not an option.  In fact, I have attempted, on at least six occasions, to contact the medical group administration, without success.

I have no intention of engaging with this provider ever again.  And I have no intention of paying any bill I receive now for lab work or anything else associated with that appointment.  It’s nearly a year later at this point.  And I was trying to move on from that appointment, which set me back a lot, both physically and emotionally.

It is unbelievable to me that doctors can provide subpar care and nothing can be done about it, unless it gets to the level where you have a lawsuit.  It seems that, that is the only way that patients can get any sort of vindication.  I can’t reason with a terrible provider.  I can’t get a direct line to anyone at the office above the provider.  I can’t get any assistance from my insurance company.  So what am I supposed to do?

I would love to work for an insurance company and advocate for patients in my position.  I would love to be able to contact a provider and say “you have to write off this bill because the patient was not treated well, and neither them nor we are going to pay for it.”

Clearly, there is a reason why I have not and will never see this provider again.  It is not like I have gone back multiple times to see her.  And I pay all my bills.  As long as the services are rendered properly, I have no problem paying.  But when services are rendered far below where they should be, I am going to fight that, especially when I had assumed that everything was done and paid for.  It’s a bit strange that 10 months later they are coming after me for money, but this provider has never contacted me to see if I was coming back to see her again or not.  I guess the loathing was mutual.

It’s also interesting because my insurance is claiming that they’re not paying due to the diagnostic codes.  Which brings me back to the beginning.  Of course, because the tests don’t make sense for the diagnoses I have and am being (successfully) treated for.  So you see, I am being sent in circles.  Once I knew what tests were run - after they were done and I saw the results - I knew they were totally unnecessary.  But this doctor was so convinced that she was right and I was wrong that she went on a very pointless (and expensive) fishing expedition.

And this is where the medical profession and the insurance industry get it wrong.  That this doctor’s experience in medical school trumps my near decade as a patient living with lupus and RA is absolutely ridiculous.  And that I should be the one to have to pay for the fragility of her ego is even more ridiculous.  She made an error.  It was a grievous one, but thankfully I’ve had a (correct) diagnosis for long enough to know that she was wrong and that I wouldn’t put up with that kind of treatment from any physician.  So I cut my losses, now she needs to cut hers.

Monday, April 2, 2018

I Bought A House!

In my last post, I shared about my foot surgery and said that there were several other things that had happened, which I had not had a chance to blog about yet.  So the first is...


Back in December.

The whole mortgage process was super stressful, and having to think so far into the future about what we might want and need, was a lot to think about.

When I went to college, I felt fully equipped for the experience.  But buying a house?  I felt like I had no idea what I was doing.  And three months after moving in, I still have no idea.  But things are finally settling down in terms of getting settled.  And for the most part, I am enjoying it.

I would be lying if I said that lupus and RA did not figure into the process.  They definitely did.  We opted for a ranch.  While not easy to find, I did not want to buy a house that at some point in the future, or even just on bad days, I would not be able to navigate.  I did not want, from day one, to relegate myself to the couch, if I am unable to do stairs.


We also bought the house mid-December and did not officially move in until mid-January.  The last time I moved, I flared massively and had to miss three days of work.  I did not want that to happen again, so we did a slow move.  And it worked!  I did not flare this time!

As far as cleaning, well, 1600 square feet is a lot bigger than the apartment that I moved out of, so it is definitely a big task.  I try not to do it all at once.  At some point in the future, I might consider hiring someone to clean, but for now, we do what we can when we can and try and keep things as neat and tidy as possible.  For me, this is important because I am definitely influenced by my environment.  If my living space is disordered, it makes everything feel that way.  Which leads to anxiety and stress, and if the stress is left unchecked, flares.

The other thing is, I had to set some firm boundaries with my mortgage lender, because of course, everything decided to explode the day before my foot surgery, and I just could not deal.  I had to have my boyfriend step in because it was just too much.  And the calls, texts, and emails any time, day or night, were a lot.  Thankfully, our realtor was very helpful.  And in the end, we got the house of our dreams, so I guess that is what matters, right?

Now that we are on the other side of the whole experience, I do think it was worth it.  I really hope that I never have to move again, though.  The whole process is a lot and there is so much that comes into play that you do not expect or think about.  We got to the point where I was ready to throw in the towel.  In fact, the night we first saw the house, I had a horrible migraine and was trying my best not to pass out or throw up.  So I guess that is how you know you have found one!  If you step foot inside the house with a horrible migraine and manage to keep it together.

Welcome Home

Monday, March 26, 2018

That Time They Went For The Jugular (Literally)

It has been awhile, like four months, which is way too long.  I’ve been computer-less, and still am, but there is so much to share.  Some of the more fun and exciting stuff will be saved for other posts.

For now, I’m taking you back to November.  To my foot surgery.  To my first surgery since being diagnosed with lupus and RA (not including the gum graft I had in November of 2016).  I feel grateful that I went almost a decade of living with these diseases to have surgery.  But I feel like it stole a part of me.  I stepped over an invisible line, and now I can’t go back.

The surgery itself wasn’t horrible.  The day after was.  I’ve never been in that much pain.  It felt like someone was repeatedly lighting my foot on fire. But the worst part of it occurred before the surgery actually happened.

I have “bad” veins.  That has always been the case, but it has become more and more apparent the longer I live with multiple chronic illnesses.  The nurse that prepped me for my surgery tried three times, to no avail.  She went and got the anesthesiologist.  He came in and asked if they had ever gone in my jugular for an IV before.  I stated that no one had ever done that before and I didn’t even realize that was a thing.

The anesthesiologist asked if he could try and get the IV by going in my jugular.  I didn’t really have a choice.  But if he wouldn’t have gotten it, I would have gotten off that table and run away, ass flapping in the wind.  And I never would have looked back.

But because I let him, I keeping looking back and back some more.  At this point, I would say that I have medical PTSD.  Part of the reason is that after going through foot surgery, having four screws put in my foot that will remain their permanently, and several visible scars, what remains is the IV in the jugular.  That’s what sticks out to me from the whole experience.  Not only sticks out, but troubles me deeply.  It was traumatic.  My stress level was through the roof. They did numb my neck first, but that was more needle sticks.  I heard the anesthesiologist warn my mom before they let her come in the room that they had inserted the IV in my neck, and not to be alarmed.

When my doctor got to the surgery center and came into the room, he said I was only the second ever patient of his to require an IV in the jugular.  Lucky me!  But the reality is, to have someone that has “bad” veins under normal circumstances not be able to eat or drink for 12 hours, what do you expect to happen?

This chronic illness journey is a crazy one, and while I am grateful to have gone nearly a decade without a major surgery, I hope I don’t have to have another for a long time.  I will need to have my left foot done eventually, but since I am not currently in pain, I see no reason to rush it.  My right foot was another story.  I was in pain all the time.  Now, I still have pain from the surgery, but no pain in the areas the surgery was supposed to help and that we’re in significant pain before the surgery.  So I guess that’s the win.  And I guess that as for the emotional stuff, time heals all wounds, even wounds in the jugular.

Awesome picture, pre-op but post IV insertion, courtesy of my doctor. 

Notice how my big toe is bowed from the bunion and my nasty hammer toes.

Note the screws 

This was many weeks after the surgery, still in rough shape but no longer needed it wrapped.

Locked and loaded

Friday, December 22, 2017

2017: Year in Review

2017 has been full of ups and downs, some of which I’ve shared here and some of which I haven’t.  While I didn’t write often in 2017, I personally feel that much of what I wrote was some of the best writing that I’ve shared on my blog to date – and 2018 will mark 10 years of blogging.  How crazy is that?  But before I get all into 2018, I need to review 2017 first.

Philosophically speaking, the post that really sums up 2017 is:

Because that’s really what this year was, personal and political.  So much of what has happened in our government has been affronts to people with chronic illnesses and disabilities.  And because I am a member of both of those groups, not only is it political, but it’s personal, too.

Personally, it wasn’t a great year for me advocacy-wise:

And health-wise, it wasn’t, either, because I had to say goodbye to the rheumatologist that diagnosed me with lupus and RA, and had to find a whole new medical team:

And politically, well, let’s just say that I made my voice heard:

There were some exciting things, though, like being part of a book project that came to fruition:

And there were things that happened in 2017 that I haven’t even blogged about yet, like…

I had foot surgery…


I bought a house…


You’ll just have to come back in 2018 and find out about that and all the rest!


As always, at the end of every Year In Review post, I include a list of books I’ve read over the past year.  This list is much shorter than in the past, but there are some really good ones here:

1.       “Wild and Precious Life” by Deborah Ziegler (NF)**

2.      “There’s No Good Card For This” by Kelsey Crowe, PhD and Emily McDowell (NF)**

3.      “Why Won’t You Apologize” by Harriet Lerner, PhD (NF)

4.      “The Life-Changing Magic of Not Giving a F@ck” by Sarah Knight (NF)

5.      “This Life I Live” by Rory Feek (NF)**

6.      “Get Your Sh*t Together” by Sarah Knight (NF)

7.      “16th Seduction” by James Patterson (F)

8.     “Option B” by Sheryl Sandberg and Adam Grant (NF)

9.      “Bath Massacre” by Arne Bernstein (NF)

10.  “It’s Okay to Laugh” by Nora McInerny Purmort (NF)*

11.   “It’s Not Yet Dark” by Simon Fitzmaurice (NF)**

12.  “Alex and Eliza” by Melissa De La Cruz (F)

13.  “My Glory Was I Had Such Friends” by Amy Silverstein (NF)*

14.  “Beyond Powerful” by Lala Jackson (NF)*

15.   “Real Life Diaries: Living with Rheumatic Diseases” (see above) (NF)**

16.  “Fighting For Our Lives” by Heather Choate (NF)*

(F) – Fiction; (NF) – Non-fiction

* Books specifically of interest to chronically ill readers

** Books specifically of interest to chronically ill readers that I highly recommend

Monday, October 16, 2017

Pharmaceutical Company Events and Chronically Ill People: Dos and Don’ts

I have had the opportunity to attend a lot of events as a result of my blog.  Many of these events are hosted by pharmaceutical companies.  Even the most “patient friendly” or “patient focused” events aren’t perfect.

I’ve had several experiences over the past year that have left something to be desired.   

Last summer, I was attending an event in Miami.  The turnaround time was 36-hours.  I knew this was crazy.  But the reason I didn’t fight it was because the one other time I asked if I could extend an offer an additional night due to the quick turnaround time, I was very firmly rebuked – only to find out later that other attendees had asked for the very same thing, and got it.

Back to Miami.  The hotel was absolutely massive.  So when it came time to meet the car to take me to the airport, I couldn’t find it anywhere.  I was so frazzled.  A chronic friend of mine who was also attending, got on the phone.  It took us almost 45 minutes to find the car.  Finally found the car.  Got to the airport.  The gate was changed four times, necessitating me having to run through the airport, and the flight was ultimately cancelled.  I spent six hours waiting in line, only to have to get out of line when I was five people from the front to make sure I caught the flight I booked on another airline while I was standing in line. 

All in all, the event was a disaster.  When all was said and done, I was up for almost 60 hours straight.  I had to take a day off of work to recuperate.  This experience still gives me nightmares.    

I understand that event planning is difficult.  And I’m sure that this is even more complicated when you are working with chronically ill people.  I also know that some of this was out of the control of the event planners, but some of it was not.     


1.       Include chronically ill people in the planning of the event.

Nothing about us, without us, right?  We know best what we need, so why not include us in the planning?  Why Miami at the end of June?  That heat and humidity really isn’t conducive to having RA and being a functioning human.  But they didn’t ask, so how would the event organizers have known that?  This might not hold for events that cater to multiple illnesses, but for events that are focused on one illness group, I think this is imperative.

2.      Provide a welcome or swag bag that includes snacks, but don’t provide too much stuff that attendees will then have to figure out how to get it all home.

I love getting swag at conferences.  Especially snacks that I can take on the plane with me when I leave.  But a huge pet peeve is being given so much stuff that I don’t have room to pack it.  I’ve learned to travel light, especially when attending events that have a quick turnaround time, so I usually have very limited space available for giveaways and the like.

3.      Include breaks, and let attendees know that it is okay to remove themselves to take breaks if they need it, in addition to assigned break times.

You might not think you have to tell patients this, but I always feel relieved when this is said out loud. 

4.      Have the event and accommodations in the same location.

This makes it much easier for attendees so that they can go back to their room and rest if they need to.  If you can’t hold the event and accommodations in the same location, provide a “wellness room” or other place that attendees can go to relax, refresh, and even nap.


1.      Make the turn-around time too short, and make travel arrangements that make sense for the attendee.

It’s not as easy for chronically ill people to bounce back, so it’s unrealistic to expect someone to spend such a short amount of time in one place, and so much time traveling.  When most chronically ill people ask this, it isn’t because they’re trying to take advantage.  Additionally, while assigning someone to the earliest flight out and latest flight back might seem like doing someone a favor, this is not convenient for many chronically ill people.     

2.      Have the event at a venue that requires a lot of walking.

You don’t want to tire people out just from them walking from their room to the part of the hotel where the event is being held. 

3.      Assume that when the event is over, your commitment to the attendees is over, too.

While not everything that happened was the fault of the pharmaceutical company, you can’t just fly someone out to a strange city, hold an event, and then say goodbye, never to be seen or heard from again.

4.      Treat people differently. 

You can’t say that one person can stay an extra night and then tell someone else they can’t.  Obviously, I’m not referring to people that have specific dietary needs and other things like that.  But if one person asks to stay an extra night because it’s difficult for them to travel, and someone else asks the same, you can’t say “yes” to one and “no” to the other.  Plus, we know each other and we talk, so there’s that. 

With everything that happened after the event was technically over, such as not being able to find the car and having my flight canceled, I shouldn’t have been on my own at that point.  There should have been someone I could have contacted who could have helped me.  It didn’t help that by the time my flight was canceled, it was after 11 p.m.  But still…

Ultimately, I did get reimbursed for the flight I purchased, and the company got reimbursed for the flight I didn’t take, because I made sure they did. 

I left feeling like I might never attend an event run by this particular pharmaceutical company again.  And that makes me sad.  But I can’t miss work to attend an event, only to miss more work because things went so poorly that I need to recover from it.  It wasn’t an oh wow, my mind was so blown that I need time to process kind of recovery.  It was more of an I’m so stressed and my brain and body are so fried that I need rest kind of recovery. 

I never want to seem high maintenance, but if high maintenance means looking out for myself and caring for myself, then I guess that’s how it is going to be.

And I also don’t want to be seen as ungrateful, because I am so honored and grateful for all of the opportunities I have been given.  But, and this is a big but, events that go the way this one did suggest that this company doesn’t know how to work with chronically ill people, or hasn’t sought input from chronically ill people about how an event that includes them should be run.

I’ve also had a few more recent experiences that have left something to be desired.

1.       In one instance, I had one screening call for a pharma advisory board.  Then there was a second call, which because of the time options, I had to take in my car during my lunch hour.  I didn’t make a big deal about that since it was a relatively short call.  A third call was scheduled, but all time options during the day, and for a significant chunk of time.  Even though they are paying for this third call, like I said, it’s during my workday.  I emailed the organizers to point out that all of the options were during the workday.  So what am I to take this to mean?  Because I’m chronically ill, I shouldn’t work?  Or that opportunities that come around here and there should take precedence to my full-time day job that is consistent?  I have struggled with having to say no to things, but this circumstance is really forcing my hand.  The big problem is that I have to take unpaid time for this – even though the call is paid – because I have no paid time off left because I’ve exhausted it going to doctors’ appointments. 

2.      In another instance, I was asked to be part of another group.  I jumped at the chance.  I didn’t hear anything finalized, so the week the event was supposed to take place, I reached out to find out if it was happening, and was told that it wasn’t.  I was then asked which of two dates would work for me.  At the time, I said they both did.  Again, several weeks went by and I didn’t hear anything.  Because I’ve been dealing with some health issues, I ended up having to schedule an appointment for one of the dates, so I emailed letting them know that I would only be available the one date.  I then received an email that they had finally decided on a date, and it wasn’t the one that I could attend.  So thanks for playing.  While I don’t expect events to be rescheduled because of me, I don’t appreciate the lack of care for my schedule.  No one reached out to say the originally scheduled call wouldn’t be happening until I asked. 

Does any of this sound patient-friendly or patient-centered?  Not to me.  Being patient-centered means more than bringing patients to the table once a year.  It means more than throwing money at patients, but treating them like crap.  It means really understanding what patients go through and experience, and the struggles that we face. 

Call it FOMO (fear of missing out), but I have to call out a bad opportunity when I see one.

And here’s a really, really important tip:

Don’t treat people who are going to blog about you like crap.

I’m not going to lie.  I hold organizations and companies that work with patients to higher standards of how they treat patients.  And unfortunately, a lot of times, they fall short of the mark. 

I had originally written this post for another site that I blogged for, but they didn’t post it because they didn’t want to damage their relationships (read money) with big pharma.  And then they told me I couldn’t write for them anymore.

Mike drop.

Leslie out.   

(So I’ve really struggled about whether to add to this post and share it, but because there continues to be a glaring lack of “getting it” that I just can’t handle anymore, I felt like it needed to be said.  I hope that people will read this and take it turn out.  Patients want to help.  I want to help.  But I can’t help at the expense of myself.  So please, let myself and other patients be part of the solution.  Let us help pharma.  Helping pharma starts with including patients in a meaningful way.)