Tuesday, November 24, 2015

Facing Forward: Laurie

Name: Laurie
Location: Ottawa, Ontario, Canada
Diagnosis: Juvenile Idiopathic Arthritis (JIA) / Rheumatoid Arthritis (RA)
Age at Diagnosis: 14 years old

How are you currently treating your condition?
I've been taking biologics to treat my disease since 1998. The effects were nothing short of a miracle - I felt a significant difference within 12 hours of taking the injection. At the time, biologics weren't available in Canada (still pending with Health Canada approval) but my parents found out about them and set up an appointment with a rheumatologist in Boston to see if we could obtain access to the drug. My parents paid out of pocket for the medication for two years until the drug was approved in Canada. Yes, you've got that right, that's $25,000/year! I think they did what any parent would for their children if they could and for that I am forever thankful. From that point on, my grades in university went up, I was in a lot less pain, and I felt like a real person again. I'm really not sure where I would be without biologics.

I think exercise has had just as much of an impact on the disease. I work out three times a week doing everything from Zumba, muscle conditioning to Pilates and Yoga. I actually participate in these aerobics classes with healthy, able-bodied people! Biologics set the foundation to control the disease but exercise has maximized what my body can do. Surprisingly, I can do a heck of a lot even with the damage done by arthritis over the last 24 years.

What are the biggest challenges you have faced since your diagnosis?
The initial diagnosis of JIA when I was 14 was a pretty significant life challenge. I struggled with coming to terms with it and add adolescence to the mix and I remember my teenage years as a very dark time in my life. It made me grow up really fast and to this day I feel like I lost a part of my childhood. But it also prepared me to take on life wholeheartedly and to adapt to whatever challenges life presented me. I learned discipline, hard work, and to never give up. I have to work twenty times harder for the "normal life" everyone else has. So this prepared me to take on the ultimate challenge...the birth of my sweet boy, Charlie. 

I first started having difficulties breathing in my eighth month of pregnancy. I had a cold that improved on its own except my breathing was still labored. I was admitted to the hospital three times in the final five weeks of pregnancy. The Internal Medicine team was stumped. No one knew why I was having difficulty breathing. I was diagnosed with asthma but my lungs seemed fine. One day before my baby was born, the doctors suspected my breathing problems were as a result of a flare of the cricoarytenoid joints (which control the opening and closing of the vocal chords. A flare would impact breathing and/or the voice). I knew I was at the end of the road. I needed to concentrate intently for every breath. If I got upset, angry, or cried, I wouldn't be able to breathe. I was terrified for me and my baby boy.

My airway just kept closing in until I could no longer breathe. My blood pressure spiked to 220/160 and I had a seizure. I crashed but luckily I was being prepped for a c-section. I think somebody upstairs was smiling on me that day as we both could have died. To this day, I can hardly believe how my baby boy is just so perfect.

After the surgery, I was admitted to the Intensive Care Unit and when the breathing tube was removed the next day, nothing had changed. I was sent for emergency surgery for a tracheostomy. A week later, I went home with a newborn baby and a tracheostomy tube in my neck.

What are your favorite tips and tricks for managing everyday tasks?
Caring for my two children, Claire (8 years old) and Charlie (3 years old) is demanding. My children were never great sleepers so it didn't take long until I was exhausted and then, of course, my arthritis would flare. It took some experience but eventually I learned that if I didn't care for myself, I wasn't effectively caring for my children. By the time my second child was born, I would sleep every time he napped during the day. These challenges also prompted me to try to find answers, and when I went looking I could hardly find any information. For example, how can I open this car seat when my hands are so badly damaged from RA? How can I carry my child around for hours on end when my body hurts so much? How do I get up in the night with my baby when I already suffer from debilitating RA-induced fatigue? This is when I decided to launch a pregnancy and parenting project in my role as a Board member of the Canadian Arthritis Patient Alliance

How do you manage to keep facing forward every day?
I've learned to adapt to so much in life so I'm now confident, after 24 years of living with Rheumatoid Arthritis, that I will be able to handle most of what life throws at me. Don't get me wrong, there is still stress, especially when it affects other people around me, like my husband or children, and I feel helpless. But for the most part, I have to accept that I can't control what is happening to me, but I can control how I respond. Having a near-death experience also puts things in perspective. I realize I need to take care of myself, not just for me, but so that I'm there to watch my kids grow up.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't be afraid. You'll be able to get through it. Your body may be weak but your mind, attitude, and spirit is not. Keep family and friends close and don't push them away.

Do you have a blog you would like to share?
I don't have a personal blog, but I have been a member of the Canadian Arthritis Patient Alliance (CAPA) Board of Directors since 2006. With the support of CAPA, I'm leading the pregnancy and parenting with arthritis project. The first phase of the project is the launch of a survey to indetify patient information needs as it relates to pregnancy and parenting. The ultimate goal is to develop an educational resource for people living with arthritis. You can learn more by visiting this page on the CAPA website. There is a link to the survey, which is available in both English and French. Please share the survey information widely as it is crucial that we hear from as many people as possible!

Monday, November 23, 2015

The Invisible Burdens of Chronic Illness

Most people do not realize that there are other burdens associated with living with a chronic illness – like the investment of time, energy, and money.

Wednesday, November 18, 2015

I'm Honestly Not Sure Why I'm Still Surprised

When I got home from ACR, there was a medical bill waiting to greet me at home (isn't there always?) This particular medical bill contained not one but two $10,455.50 charges - one for each of my most recent Rituxan infusions. The total charges listed on the bill added up to $21,797.96. And if that's not enough to make you feel a little bit nauseous, I don't know what is.

"Luckily," since we have already met our extremely high deductible for the year, we were "only" being billed for $3,117.62. And while that number is significantly less than $20K, it is still an amount of money we absolutely do not have to spend. In fact, after my emergency root canal, repairing our car after a small accident, and buying three plane tickets for my sister's wedding in January, we currently have that amount of credit card debt already. 

The good news is that the Rituxan Co-Pay Card Program is supposed to help me cover the cost of the medication itself, which by my calculations comes to $2,990.28. And I want to make it clear that I am extremely grateful for this financial help. Without it, Rituxan would not even be an option for me - and (knock on wood) I seem to be doing really well on it, for which I am also grateful!

What I am not grateful for, however, is the extraordinary amount of hoops I have to jump through to get this help. The way the Co-Pay Card Program is supposed to work is that, when you get your bill, you fax your Explanation of Benefits (EOB) to the program, they load your card with the right amount of money, and you use the card to pay your bill. Unfortunately, it is never that simple.

Six months ago, when I had my first Rituxan infusion, it quite literally took me several hours on the phone to figure out where to even fax the EOB in the first place. (If you are a Rituxan patient and need to fax your EOBs before you can use your co-pay card, let me save you several hours of your life: the number is 888-332-9864.) I figured this time around, since I already had the number, it wouldn't be as bad. So last week my husband used his work fax to send my EOB to the Rituxan Co-Pay Card Program. We got a response fax saying they had received it. 

I waited several days to make sure they had time to process my information. Yesterday I called, pressed the secret 0 key, and talked to a very nice representative in an attempt to find out the exact dollar amount that had been put on the card. (Because last time they put the wrong amount and I couldn't pay my bill until they fixed it). 

Shockingly, however, the Rituxan Co-Pay Card Program "did not receive" the fax my husband sent. They wanted to know if I could send it again. I'm honestly not sure why I'm still surprised when this stuff happens.

I argued with them for a little bit, because I had a confirmation receipt saying that they had, in fact, received the fax. But ultimately I knew that if they couldn't find the information in my account I wasn't going to get the money I needed on my card. I knew I wasn't going to have any choice but to send my EOB it again. Because I was clearly frustrated with the situation, the very nice representative gave me another fax number, which she claimed was her direct fax line. She also gave me an address that I could snail mail the form to, in case fax was not convenient for me. (If you are a Rituxan patient interested in the address, it is: The Macaluso Group, 100 Passaic Suite #245, Fairfield, NJ 07004)

My husband tried the "direct fax number" the representative had given me as soon as I hung up. Of course, there was no answer at that number and the fax could not go through. So we sighed and re-sent the fax to the original number, and then also put a copy in the mail. Now I guess I have to wait a few more days before calling them back again and trying all over again.

I want to emphasize how grateful I am that this financial help even exists. Rituxan has been working very well for me, and this life-changing medication would not be an option for me without this program. 


Butwhen you call the program the first thing the recording tells you is "we provide fast and convenient co-pay support to eligible patients" - which could not be farther from the truth. Every single time I have to deal with them, it takes several interactions, multiple hours of my precious childcare time and large amounts of my limited energy. The only positive thing I can come up with is that this medication only requires infusions every six months, so at least I only have to go through this chaos twice a year?

I just can't seem to stop being surprised that "help" is so difficult for patients to come by.

Monday, November 16, 2015

The American College of Rheumatology Annual Meeting

After spending the weekend at the Joint Decisions Empowerment Summit, I went back across the Golden Gate Bridge to spend a couple of days attending sessions at the American College of Rheumatology (ACR) Annual meeting. Here are the sessions I was able to attend this year:

Sunday, November 8th

Patient Advocacy: Patient and Professional Perspectives 

Monday, November 9th

ARHP Debate: Opiods for the Treatment of Chronic Non Cancer Pain...Use or Abuse?

Pregnancy and Infertility in Rheumatic Disease

Men, Masculinity and Rheumatoid Arthritis 

Tuesday, November 10th

Sexual Issues in Rheumatology: Assessment and Intervention    

Pharmacotherapy: What's New In Rheumatology

Prospects for Treating Rheumatid Diseases through Modification in the Microbiome

Lesbian, Gay, Bisexual, Transgender and Queer: Conversations and Care  

Although ARC is primarily a conference for rheumatologists and other health care professionals, I learned a lot at all of these sessions. I'll be writing about my experiences for RheumatoidArthritis.net (I'll also share links on this blog!) so keep your eye out for those articles over the next few weeks!

Joint Decisions Empowerment Summit

I think I am finally at least mostly recovered from my very exciting recent trip to California! 

I flew in to San Francisco and my first stop was across the Golden Gate Bridge to beautiful Sausalito - where I was excited to be able to participate in the the second Joint Decisions Empowerment Summit.* It's always wonderful to get to be able to see my fellow RA bloggers in person!

I especially enjoyed the story sharing session, where each blogger chose a song with a lyric that had meaning to them on their RA journey. Those of you who follow me on Instragram already know my choice: "the trick is to keep breathing" by Garbage. When things seem difficult or overwhelming, that's what I always come back to: take a deep breath and figure out how to keep facing forward. Many of the lyrics that the other bloggers chose had similar themes, and it lead to a great discussion of how to really live life with RA. If you have Spotify, you can check out a playlist of all the songs we chose and discussed here

If you aren't already following these other amazing RA bloggers, I encourage you to check out their blogs and connect with them on social media! They are all quite amazing people and I am honored to be able to count them among my friends!

Wren of RheumaBlog
Carla of Carla's Corner
Britt of HurtBlogger
and, of course, RA Guy!

*Janssen Biotech, Inc., paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.

Thursday, November 5, 2015

Joint Decisions Empowerment Summit, Round 2!*

This afternoon I'll be getting on a plane to California to attend the second Joint Decisions Empowerment Summit! I am very excited to be spending the weekend with some of my very favorite RA bloggers - who, after I got to meet them in Boston last year, I am now lucky enough to count among my friends. 

This year you can join us too! The fourth Joint Decisions Web Chat will happen at the Summit on Saturday evening. It will feature comedian Matt Iseman (who lives with RA himself) and a panel of RA bloggers (including yours truly!) We'll be chatting about how to break down the barriers to communication between patients and their rheumatologists, and we'll answer your questions LIVE!

I really hope you'll join us!

If you're interested, you can also learn more about the Joint Decisions program in this article on HealthCentral.

After the Summit this weekend, I'll be spending a couple of days at the American College of Rheumatology annual meeting. I have a press pass and I hope to attend a bunch of sessions and learn about what's going on at the cutting edge of the field of rheumatology - a field that has such an impact on my personal life and that of many of my readers! I'll be sharing what I learn at ACR here on this blog and on RheumatoidArthritis.net, so keep a lookout for that too!

It's going to be a very busy and exciting week! I'm not sure how much of a chance I will get to keep this blog updated while I am on the road, but if you'd like to follow along please keep an eye on my Twitter, Facebook, and Instagram pages!

*Janssen Biotech, Inc., paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.

Monday, November 2, 2015

Tuesday, October 27, 2015

Facing Forward: Shelly

Name: Shelly
Location: Central Minnesota
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 27

How are you currently treating your condition?
After having a really bad experience with the Enbrel injection I decided to seek out alternative options for care.  I located a physician in my area who focused more on food and exercise to better yourself.  She suggested fixing what seemed like "leaky gut" and clean eat.  Now if you know me, I cannot clean eat, I mean I won't do that to myself.  So I tried the supplements she suggested from a company called Plexus.  She recommended them due to their all natural ingredients.  She had suggested I take a few supplements so I did.  After 2 weeks I noticed my constant craving for sugar was gone so I decided to TRY clean eating.  I cut out dairy because she said it really adds to inflammation and I bought foods that were gluten free and non gmo when possible.  After 2-3 months of the supplements and eating better I slowly stopped taking my prescribed medication and I am happy to say I don't take any as of right now.  Do I still have flare ups?  Absolutely, but to not have the constant side effects on the medication and to generally feel good has all been worth it.

What are the biggest challenges you have faced since your diagnosis?
I tell a lot of people that the HARDEST thing about having Rheumatoid Arthritis is looking at where you are now and where you were.  Remember when you could open that jar, the toothpaste, or a water bottle on your own?  Those days are gone.  That was so hard for me, I would get in that mindset that I would forever have to rely on someone to do things for me.  That didn't go over well at all because I am very independent so unfortunately my husband got a whole lot of attitude from me during those times when I needed help but didn't want to ask for it.  Luckily those days are few in far in between but they will always be there.

What are your favorite tips and tricks for managing everyday tasks?
When I have a flare up, the one thing I want to do more than anything is stay in bed.  With a one year old though that's not possible so I set tiny goals for myself throughout the day.  I physically write them out and check them off as I get them done.  It makes me feel like I have accomplished something, though it might not be much, on those tough days.

How do you manage to keep facing forward every day?
My son has been a huge motivator for me.  He is now one and is my whole entire world.  I want to be sure that I am able to care for him every single day no matter what his needs are, and no matter how heavy he gets.  He is my light.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I will never forget getting the call that said I had Rheumatoid Arthritis.  I was in my car and I immediately called my now husband and broke into tears.  If I could go back I would have told myself that life isn't over.  I truly thought "this is it".  As I learned more and more about RA I found a way to fight for the quality of life I want.

Do you have a blog you would like to share? 

Are you interested in being featured on Facing Forward? Email me at mariah@fromthispointforward.com!

Friday, October 23, 2015

It Still Aches

Today Facebook reminded me about this picture - and it made me cry. Facebook has no way of knowing, but this picture was taken about 30 seconds after I nursed this little dude for the last time ever. I had to wean so I could start medications to treat my RA - chemotherapy medications that are obviously not safe for babies. 

I know with certainty that I made the right choice. My RA is under better control now than it has been for years. I have more energy and less pain, so I've been able to come a lot closer to being the kind of mom I want to be. 

But today this now 15 month old little dude is sick with a fever, and I would give anything just to be able to put him to my breast for comfort. I know I made the right decision, but it wasn't at all what I wanted or planned. And it still aches.

This is an example of why I work so hard at advocacy and fundraising for arthritis - and at providing resources for moms with chronic illnesses. I hope that someday in the future, moms with RA (or little girls growing up with JA) won't have to make this kind of difficult and painful choice.

Tuesday, October 20, 2015

The RA Guy Foundation

My amazing friend RA Guy recently launched the RA Guy Foundation, which offers a positive message of hope for people living with rheumatoid arthritis. Go check it out!! (And keep your eyes peeled for cameos from yours truly in the "Stories of Courage" sections!!)
The RA Guy Foundation’s programs put a focus on living. Positivity. Honesty. The ability to laugh as you bravely walk this path. Comfort and encouragement by actively finding ways to overcome the emotional and physical challenges of the illness. An immediate and continued emotional connection. Real actions for real change.