When Health Is The Focus Again

It’s been a while. Mainly because my health hasn’t been the center of everything. It’s so easy to write when things aren’t going well. It’s harder to write when they are.

In the last two years, I bought a house and got married. And of course, lupus and rheumatoid arthritis have been there and figured in. We bought a ranch because I didn’t want to be forced to navigate stairs if my health declines. A lot of what went in to planning our wedding was done with chronic illness in mind. But even so, those events were at the center.

Now, due to circumstances beyond my control, my health is front and center again. Several months ago, I found out that Quinacrine was no longer available – more about that in another post. As a result of this, my rheumatologist suggested that I go back on Plaquenil. I had been on it before, with my previous rheumatologist, with little success. I told my current doctor that, and he wasn’t convinced. Even when I told him that I had been taken off of it due to elevated liver enzymes, he told me that was incredibly rare with Plaquenil.

So I played the game. I started taking Plaquenil again, just to prove a point. And prove a point, I did. Pretty much every side effect that comes with Plaquenil, I had. I had headaches, extreme nausea, and severe itching. I switched to taking the medication at night instead of the morning and that helped with the headaches and nausea, but I continued to have extreme itching all over my body.    

When I told my doctor my symptoms, he told me that I must have an intolerance to Plaquenil and that I should stop taking it. He didn’t offer any other options. Well, other than telling me that I could make a killing if I could find a way to manufacture Quinacrine myself.

And with this situation, I feel like nothing has changed in the 12 years that I have been sick. Because of my “overlap syndrome” of lupus and RA, many treatments aren’t an option for me. Methotrexate didn’t work and caused elevated liver enzymes and low white blood cell count. Cellcept and Tacrolimus were no good either, for various reasons. Humira caused me to go into the worst lupus flare I’ve ever experienced and so that means that typical biologics for RA are basically off the table for me.

So for now, I’m on Imuran and that’s basically it, at least until I want to get pregnant. And then the jury is out because my rheumatologist and gynecologist disagree on whether I can remain on Imuran during pregnancy. More than likely, I’ll have to give it up, too.

And then where will I be? The ultimate test. How will I be on nothing at all? Will I be able to function?

It’s beyond frustrating.

And right now, I don’t feel great. My labs don’t look great. It all feels like a crapshoot. There are no clear answers or easy decisions. There’s just better or worse.

My old rheumatologist used to measure progress based on whether I was having more good days than bad days. For most of the time I saw him, I was having more bad days than good. But things got better. And I’ve maintained that. Going off of Quinacrine and back on Plaquenil changed things. Suddenly, I was having more bad days than good.

So for now, I wait. Wait for solutions and treatments that don’t exist, wait until the answers become clear to me.

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.

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.

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.

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. 

Before

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

After

Note the screws 

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

Locked and loaded

The Storm After Years Of Calm

What’s one of your worst fears?

One of my worst fears, for as long as I have been chronically ill, is seeing a new doctor who disagrees with my diagnoses.

That’s exactly what happened yesterday.

My old rheumatologist is leaving the state so I needed to find a new one.  I opted not to stay within the system my old rheum was in because he and I talked about it, and it wasn’t particularly convenient for me proximity-wise, and he had heard of the doctor that had previously been recommended to me by a family friend.  He felt that my illnesses are at a stable enough place where I didn’t need to stay within the same system if I didn’t want to.

I’ve been waiting several months for this appointment.  My hope was to get in while my old rheum was still practicing, but that didn’t happen.

So finally, the appointment was yesterday.  I went in feeling very prepared.  I had a notecard with my current medications and a notecard with my past medications.  I had a list of hospitalizations and procedures.  And I had a list of current issues that I wanted to make sure I touched on.    

I wasn’t prepared.  Not by a long shot.

This appointment felt eerily similar to my first appointment with my old rheum.

Questions being thrown at me rapid fire.  Asking me why I had listened to my previous doctors, all the while expecting that I am going to listen to everything this new doctor is telling me. 

It felt the same.  Almost.

Except that back nine years ago, I was on a quest for answers.  And now, this one appointment has seemingly refuted or called into question everything that, that appointment nine years ago sought to make clear.

That I thought was clear.  That I had accepted as given.  That I had accepted as my life.    

This appointment was 50,000 times worse because this doctor refuted the last nine years of my life.  Like it’s a lie.  Like it’s some kind of joke that I haplessly fell for.  Nine years. 

Nine years of experience can’t be wrong, can it? 

I know how I felt then.  I know how I feel now.  I know that I’ve been on a lot of medications that did not work.  And I know I am currently on a regimen that is keeping me feeling reasonably well. 

Basically this new doctor is saying that I may have lupus and RA, but I may not.  And that she is 100% sure – from NOT looking at my records, not having any current labs or x-rays – that I have fibromyalgia.  But as for the rest, it’s up in the air right now.

So if I don’t have lupus and RA, how does one explain why the medications I’m currently on have worked and have made me feel better?  Clearly it’s not just a placebo effect, that the very act of taking pills makes me feel better.  Because I’ve been on plenty of medications that have made me feel far worse.    

It’s not like being told you have cancer and then someone saying that, actually, you don’t.  That is probably the kind of news that most people in that situation would be glad to hear.

It’s not as if lupus and RA are small potatoes.  I would love not to have these illnesses, or any illnesses at all, for that matter.  But I do.  And I’ve been working within the confines of these diseases for nine years. 

Everything makes as much sense as it seems life ever makes with lupus and RA.

I know who I am with these illnesses.  I’ve accepted the life I will have because of these illnesses.  In many ways, I am who I am today because of these illnesses. 

Take that away, and who am I?  I don’t know.  The hurt and confusion that I’m experiencing right now is deep. 

It’s not like the things this doctor is saying click and make sense, and I’m finally seeing everything clearly for the first time in nine years.  In fact, for the first time in nine years, since I was diagnosed, I feel the way I felt before I had a diagnosis, before I had a name and diagnostic code to slap on myself.  I feel lost and scared.

I’ve felt lucky that I had labels to put on my diseases and that I had concrete evidence for having those diseases.  Is it possible that my lupus and RA are in clinical remission, but I’ve developed fibromyalgia secondary to that?  It wouldn’t surprise me, if, after spending so much time in pain, that my body misreads the pain signals and creates pain even when it’s not actually manifesting in my organs and joints. 

But to say that I don’t have lupus and RA at all and that I never actually did?  I truly don’t know what to say to that.  It’s incomprehensible.    

I’ve built the last nine years of my life around these illnesses, and for that to be taken away?  It’s unexplainable.  It’s devastating.

I’m not a science experiment.  You can’t just act as if what I’m telling you and what I’ve experienced doesn’t matter.  I know my body better than some doctor that I’ve never seen before and who literally knows nothing about my history. 

So maybe at our next encounter, maybe I will stand up and fight harder.  But I was so taken aback, so crushed, that all I could really do is sit there and shake my head.  Like is this really happening? 

I got beat down.  And I slowly have to get back up.  I’m trying to convince myself that no matter what, I belong in and to the autoimmune disease community and that all of the work and advocacy I have done over the last nine years matters.  And it breaks my heart to think that, that might not be the case.    

The worst part of the whole interaction was that there was no care or concern.  It wasn’t that this doctor seemed genuinely concerned about me being on medication that I don’t need to be on or that I had been treated unsuccessfully for two diseases for nine years and now it was time to find answers.  It seemed like she just wants to be right.

And I’m not convinced that she is.

And I have to wonder about her end game.  Does she want me to go off of my meds to see what happens and how I and my labs look without my current medications?  I don’t think I will be functional for a week without them.  I’m not sure I’d even be functional without them for more than a day.  

Maybe it’s too soon to be writing this post.  None of the labs or x-rays are back.  But I had to get it out.  I had to turn to the one place that I have documented everything since this journey began nine years ago. 

I think part of the most insulting thing is that when I was leaving, she handed me three brochures created by the Arthritis Foundation – one for lupus, one for RA, and one for fibromyalgia.  I will read them, cover to cover, only so that I can note down all of the symptoms that I have to prove a point.

But I don’t need them.  And I don’t deserve to be handed them as some consolation prize.  I’ve been doing this for nine years.  It’s insulting that that’s the impression she got of my knowledge of my own illnesses.    

But when your bedside manner paralyzes a patient and takes them back to where they were when they had no clue what lupus was and thought arthritis only happened to old people, that’s a problem.  When you take someone who is stalwart at advocating for others and cause them not to be able to advocate for themselves, that’s a problem.  And honestly, that’s on her, not me.  So let’s get one thing straight.  I am not that scared 22 year old that I was when I was diagnosed.  I’m a stronger, better person than I was then.  And I need to muster my strength because apparently, I’m literally and figuratively just getting started.  

(I had originally planned after the appointment to try my hand at vlogging, but that’s not happening because I would just be a hot, crying mess)

HealtheVoices Conference 2015*

This past weekend, I had the opportunity to attend the HealtheVoices Conference in Jersey City, New Jersey.

I’ve never been to Jersey City before, and it was fun to see New York from the other side of the river.  I have to say, it looks better from that vantage point.

I think the best thing about these types of events is that it’s a chance to get to see each other in person. 

I got to hang out with friends Hurt Blogger Britt, Titanium Triathlete Dina Neils, Rheumablog Wren, Carla Kienast at Carla’s Corner, Mariah of From This Point Forward, and Angela of Inflamed, and I got the chance to meet Aimee Espinosa (Fit Aimee RA), who also has RA.   

I also had the opportunity to see Jenni Prokopy, aka Chronic Babe again.  And I got to meet Kerri Sparling of Six Until Me, who I have followed for years, even though I don’t have diabetes.

I also got to see some of the Janssen folk that were at the Joint Decisions Empowerment Summit in Boston in November. 

The unique thing about this conference is that it brought together various disease groups, including, aside from RA, HIV/AIDS, Crohn’s disease, and metastatic breast cancer. 

It’s not often that you get the opportunity to interact with so many other people from different illness groups.  What struck me the most was that, despite having different diseases, our experiences are very, very similar. 

This was the first year of this conference, and overall I think it was a good start. 

There was a relaxation room, plenty of blankets and hot and cold packs were on hand, food was always available, and overall, it felt like there was an effort made to understand our needs. 

Our RA group had some issues with the chairs.  I felt a little high maintenance having to get up and stretch every hour practically.  But then we commandeered some comfy chairs that were much more manageable. 

I learned a lot of useful information during this conference about the importance of social media, the importance of what we do as bloggers by sharing our stories and advocating for others, and how to be the most successful at blogging. 

I hope that the Everyday Health and Janssen folks got to understand a bit more about the illnesses that were represented at the conference, especially RA. 

It was sad to say goodbye to friends at the end of the conference, but we’ve built lasting relationships that have been fostered both online and in person. 

And the in-person aspect can continue to be fostered at conferences and events such as the HealtheVoices Conference.

*Janssen paid for my travel expenses for the conference; however, all thoughts and opinions expressed here are my own. 

Adventures In Boston And At The American College Of Rheumatology (ACR) Conference 2014*

My original plan was to write two separate posts about my weekend in Boston, one about the Joint Decisions Empowerment Summit, and the other about my experience at The American College of Rheumatology (ACR) conference.  But I decided to combine these two things into one long post so I didn’t have one that was profoundly positive and one that was profoundly negative.

I arrived in Boston on Friday night.  I had a few minutes to settle in before attending a welcome dinner for members of the Janssen Biotech and CreakyJoints teams, and the patient bloggers.  It was amazing to see the friendly faces of those I have met in person before, including Hurt Blogger Britt, Inflamed Angela, Cathy Kramer of The Life and Adventures of Catepoo, and Spoonless Mama Rachelle; and new faces but definitely not strangers Carla of Carla’s Corner, Wren of Rheumablog, RA Guy, All Flared Up Amanda, Titanium Triathlete Dina Neils, and Mariah Leach of From This Point. Forward.

On Saturday, most of what we did was share our patient stories.  While we all know each other via our blogs, being together in person and actually talking was incredibly powerful and uplifting.  I was so lucky to be in the company of so many amazing, amazing people.  We also got to hear the amazing story of Tina Wesson, best known for winning the second season of Survivor, who also has RA. 

It’s events like these that uplift me, inspire me, and inject positivity, enthusiasm, and the sense of family and community in living life with RA. 

Sunday, was more business than personal.  We gave a lot of feedback about the Joint Decisions webinars, which was the collaborative effort of CreakyJoints and Janssen.  We also had the opportunity on Sunday to go to ACR.    

I have to admit that when I was told I would have the opportunity to go to ACR, I was more than a little excited.  Call me a dork, but I have been wanting to attend since I first got sick.

I had high hopes for what would be in store.

I only had a few hours before my flight, but I was grateful to have the opportunity to check it out and see what it was all about. 

I really only made it through the area where the pharmaceutical companies are set up.  To say that they each have their own booth is an understatement.  They have these visually and technologically advanced spaces that can only be described as show pieces.  Most booths had plush carpet and elaborate little cafes and sitting areas inside. 

But that’s where the glitz and glamour ended.

I happened to wear my “I Am The Face of Arthritis” T-shirt.  I love this shirt and would wear it all the time if I could. 

But within  two minutes of entering the convention center, I felt like something was up.  I was being stared at and given dirty looks.  I asked somebody I was with if I was crazy to feel like people were staring at me, and she agreed that it was definitely happening, and often not very subtly, I might add. 

I may have RA, but I am not blind.  Hello all you people, I see you staring at me. 

I was very taken aback by this response.  Why are you in rheumatology if you can’t handle the realities of this disease?  Maybe most of the people I encountered were researchers with little patient contact, at least I hope that’s the case.  Because otherwise, I really don’t understand. 

And unfortunately, the odd behavior didn’t stop at dirty looks. 

The minute we mentioned we were patients and bloggers, people didn’t know what to do.  One woman turned around and walked away without saying a word.  Some people wanted to know what a blogger was.  Not smart because if you knew what a blogger was, you would know that I would write about and share your rudeness with the world. 

I understand that in the capacity the pharma companies were in at ACR, they are concerned with being accused of trying to sell drugs directly to patients, which is a big no no.  But, it doesn’t mean that they have to be rude and ignore us.  You can welcome us to ACR. 

I’m sorry people, but let’s be real.  Us patients help you pay your bills and keep your families fed.  You might want to be nice to us.

First and foremost, ACR is an academic conference.  That was made abundantly clear.   But if “patient” truly is a dirty word at ACR, than the priority of who is being served needs to change. 

To be fair, one booth was very friendly to us.

Here are a few selective live tweets from ACR:

And the members of Janssen Biotech who were present and  hosted the Joint Decisions Empowerment Summit in conjunction with CreakyJoints, were amazing.  They treated us like celebrities, really listened to our experiences and feedback, and pulled out all the stops for us while we were in Boston. 

In finding out that ACR is pretty not patient-friendly, made the rest of my Boston trip so much better because of how amazing it was. 

I’ll be the first to admit that I only got a small glimpse of what ACR is all about, but what little experience I did have, really didn’t meet my expectations. 

I’m sure that in writing this post, I will probably end up on the ACR blacklist and will never have the opportunity to attend again.

And of course, illness didn’t stop there.  I got to the airport to catch a plane to New York, and was told by TSA that I was moving too slow.  Really?  Do you see what my shirt says?  Learn to read and then tell me I move to slow.  When I got to the other side of the security checkpoint, I feverishly grabbed my belongings, not wanting to be rebuked a second time for my speed or lack thereof.  And the security guard on the other side of the checkpoint told me to take my time to make sure I didn’t forget anything.  Come on government employees, pick a side.  I’m considering looking into TSA-pre for the simple fact that I won’t have to go through the whole thing with taking my coat and shoes off, taking my laptop and toiletries out of my bag, and then having to put it all back together again.   

Overall, I will say that I suspect that some of us bloggers don’t get out much, considering the antics that occur when we’re together, including finding a million and one ways to screw with the cardboard cutout of Matt Iseman. 

Aside from ACR and TSA – see, nothing good can come of abbreviated organization names – I truly had the most amazing time with my fellow RA bloggers.  Old friendships were strengthened and new friendships were forged.  And I’m still standing, despite the dirty looks and slow comments. 

I know what you're thinking.  Way to keep it classy, Leslie.  But I am keeping it real.  This goes out to lupus, RA, ACR, anyone that's ever doubted me because of my illnesses, and whoever keeps calling my cellphone and asking for my dead dad.  

* Janssen Biotech paid for my travel arrangements to Boston for the Joint Decisions Empowerment Summit and my attendance at ACR,  however, the views and opinions expressed here are my own.  

“Words and Pictures”: What It Means To Love And Be In Love When You Have RA

I recently rented and watched “Words and Pictures”.

For those who don’t know, “Words and Pictures” is a film starring Juliette Binoche and Clive Owen.  In the film, Juliette Binoche’s character has RA.

According to the Arthritis Foundation, this may be the first movie ever to feature a main character that has RA (http://www.arthritistoday.org/what-you-can-do/everyday-solutions/relationships/words-and-pictures-movie.php).

I’ve never seen a portrayal of RA like this before.  It was so accurate, almost too real.

There were outward manifestations of RA, such as the use of a cane and crutches, and wrist guards.

There were also the more inward manifestations of RA.  Watching Juliette Binoche’s character fight internal frustration and what she was not able to do, or having to call her sister to come help her undress, really brought RA home. 

Juliette Binoche’s character is shown having difficulty undoing buttons.  At one point, she takes out a mallet to open a prescription bottle, sending pills seemingly everywhere. 

Haven’t most of us with RA been there before?  I remember one time, I was ready to throw a jar of pasta sauce at the wall because I couldn’t get the lid off of it.   

At times, I found it difficult to watch Juliette Binoche’s character struggle with some of the same things I struggle with.  It reinforces the idea about what healthy people take for granted in their everyday lives, and what many of us with RA lament that we can no longer do, and long to be able to do again. 

In the movie, though, Binoche’s character, an artist, is forced to adapt her tools and instruments so that she can continue to paint, despite not being able to hold a paintbrush with her hand.

This adaptation is pretty amazing to watch. 

In the movie, it is made abundantly clear that Jack Marcus (Clive Owen) loves Dina DelSanto (Juliette Binoche), RA and all.  They are both slaves to their art, and they are both rough around the edges.  Both of these characters are deeply flawed, and at times a bit frustrating to watch.

There was a point in the movie that I found particularly poignant.  The first time that the two characters are becoming intimate, Juliette Binoche tells Clive Owen he has to be careful of her body.

When Clive Owen told Juliette Binoche, “You just have to tell me what hurts, where, and how much,” I cried.  I literally shed tears. 

To me, that was the biggest lesson in the movie.  Yes, it portrayed a main character with RA for possibly the first time ever. 

But it also underscored that you can love and be loved despite having a chronic and debilitating illness like RA. 

The San Francisco Gate called the movie “odd and thought-provoking,” and it truly is both of those things (http://www.sfgate.com/movies/article/Words-and-Pictures-review-Odd-and-5498484.php).

It’s also kind of amazing to see someone like me in film.  That so rarely happens, and the power of that shouldn’t be underestimated. 

I don’t think this movie is for everyone.  The story felt a little clumsy at times.  And I watched it alone, which was good.  I don’t think my boyfriend would have liked it.  And I’m not sure that someone who doesn’t have RA can really understand or comprehend or appreciate the significance of the illness, despite the fact that this film features a  main character suffers from it. 

My Poor, Nodule-Ridden Foot

I have never liked my feet.  Even before lupus and RA, my toes are genetically defunct.  They go every which way and are just gross. 

But recently, I've noticed a new development with my right foot.  First there was a nodule on my big toe, and now there is also a nodule on my little toe.  My foot literally hurts all the time, especially when I put weight on it (which is most of the time).

I am aware that nodules are a very common consequence of RA, but I never realized how debilitating they can actually be. 

It is pretty crazy.  I feel like the nodules get worse by the day, unless I am completely off my feet.  Then they seem to calm down and retreat a little bit.  But otherwise, they hurt something fierce.

I have to grit my teeth in pain, but I have to go on with my daily life because I don’t really have a choice. 

And the nodules also remind me of the nightmare that I've had many times that I wake up and my hands are totally deformed. 

RA can change by the day.  I go to sleep with the nodule looking one way and wake up with it looking differently.  I go to sleep with one nodule and wake up with two.  It's very distressing; I’m not going to lie.

My body is finally starting to show its wear on the outside.  But to the untrained eye, these nodules might not be noticeable.  That's why I point them out in the picture (see photo at the end of this post). 

To me, I noticed them fairly quickly and wondered if my eyes deceived me.  Maybe my feet have always looked like that, with strange bumps of bone forcing their way out.   

But my rheumatologist confirmed that I do in fact have two very angry nodules on my foot. 

I'm not crazy.  They are really there. 

And what this really means is that my illness is in active-disease mode.  Even though it seems that lupus may have the upper hand at the moment, clearly RA is there competing for prominence. 

And visible, painful nodules are a really great way for RA to declare itself to me. 

I thought that maybe I was lucky enough to escape some of the ravages of RA, but I guess not. 

I only hope that the nodules don’t get worse, because that might necessitate a review of, and changes to, my current treatment regimen.

But I’ll just have to wait and see…and keep my eyes peeled…