Monday, December 21, 2015

James May – A Man’s Story of Understanding and Healing

Nearly three times more women have RA than men....but there are still almost half a million men living with RA in the United States.

Tuesday, December 15, 2015

“Pregnancy in Rheumatic Diseases” at the American College of Rheumatology Annual Meeting

The approach presented is a useful way for women with RA to evaluate themselves before deciding to start a family. 

Saturday, December 12, 2015

Me. Honestly.

I know I haven't updated much about my life lately lately, and here's why: I've been struggling, and sometimes that leaves me at a loss for words. 

I've been having strange digestive issues since September. I completely lost my appetite and a ton of weight. Doctors discovered I was anemic and suspected internal bleeding. So I've spent the last three months worried about the possibility of cancer or yet another chronic autoimmune disease.

I did get some "good" news from the doctors this week. Turns out I have an infection - a type of bacteria has been attacking the lining of my stomach. Hopefully we can knock it out with some heavy antibiotics, and my fingers are crossed that the immunosuppressants I take for my RA won't make the infection too hard to fight. If the bacteria have caused bleeding ulcers, which is likely, hopefully we can heal those quickly too.

I'm writing this now because I wanted to try to share my authentic self. I want to acknowledge that life/parenting is HARD - especially with health issues. We are ALL struggling with something. And, though it is a challenge for me personally, I am trying to learn that it's ok to reach out for support. 

Thursday, December 10, 2015

The End of The Saga?

Well, I think the saga of trying to use my Rituxan co-pay assistance card is finally over - at least until my next infusion! 

Earlier this week, the mystical Claim 1500 form with the J codes arrived via snail mail from my doctors office (printed on an old dot matrix printer, no less. Because it may be almost 2016 but apparently medical offices still love to use techniques from 35 years ago!). 

APL took the forms to work and faxed them (to the 888-332-9864 number that hopefully will be listed on their website in January). As suggested by the representative I talked to on December 1st, this time we included a fax cover sheet addressed to the claims center and including my Rituxan co-pay card member ID number.

Today I got a direct call from the product manager I spoke with on the phone the other day to let me know that my forms had been processed and my card had been funded. Which I guess goes to show you that, in addition to potentially helping others, giving feedback might also help you get some special treatment!

That being said, I was so relieved to hear that the whole saga was finally at an end I didn't realize until after I hung up with her that the number she had given me - $2,980.28 - was actually $10 less than the amount I owe on the bill. I looked at the Claim 1500 form to see if I could figure out why that had happened, but it was all gibberish and pre-insurance numbers that didn't match anything else I could see anywhere else.

In the end I gave up. The payment for $2,980.28 did actually go through, and I just didn't have the energy to go up to bat again over $10. Guess the next two times I want to treat myself to a latte, I'll just skip it.

Tuesday, December 8, 2015

#ChronicSex Chat 1

If you missed the first-ever #ChronicSex chat on Twitter last Thursday, you can read the Storify of the chat here! And please consider joining the chat on a future Thursday. I won't be able to join ever week (darn kids!) but I hope to join as often as possible, as I think this is a very important topic that needs more discussion!

Follow me on Twitter too!

Friday, December 4, 2015

Opioids for the Treatment of Chronic Pain… Use or Abuse?

The question being debated by two prominent doctors was this - Can doctors safely prescribe opiates for chronic non-cancer pain? 

Wednesday, December 2, 2015

Someone Somewhere Actually Cares

Guess what? It turns out that someone somewhere does actually care about suggestions for making patient's lives easier!!

Today I had a very nice and productive phone conversation with the product manager of the RA Copay Assistance Program. I thanked her very much for providing patients with this wonderful financial support, which makes otherwise inaccessible medications a possibility for so many. But told her honestly that I have had quite a few issues when it comes to making use of their support program. I asked her if she would be the right person to give some feedback and suggestions on how to reduce the burden of the program on chronically ill patients. She said she would love to hear my input.

First, I told her that the automated system on the phones could be much improved to make it easier and more efficient for patients to navigate. Specifically, patients should be informed that there is an option to access a representative directly, without having to spend 20 minutes answering 20 recorded questions. This is particularly true for patients who have already answered all of those questions when they originally applied for the card.

She responded that I would be happy to hear that the entire phone tree system was being re-vamped, and that the new system was expected to launch as of the first of the year. I told her that sounded great and was much needed.

Then I moved on to the information provided to patients on the program's webpage - specifically under the FAQ section. I suggested that this system could be improved to include substantive information that patients could easily reference to make this process slightly more simple. Though the FAQs currently specify that patients will need to provide EOBs to have their card funded, the current site provides no instructions whatsoever on how to do so. The appropriate fax numbers (i.e. the real one given to me by the representatives on the phone) and the address for mailing should be listed clearly as options on the website. Also, since as I just discovered there is a possibility that EOBs provided by certain insurance companies may not have sufficient information, patients should be warned that additional documentation might be required. Advanced notice of what may be required from us can help us budget the appropriate amount of time to deal with these issues, as well as reducing our frustration with the process. 

She responded that they had received similar feedback from others, and that the website - especially the FAQs - was also being re-vamped. The website with this updated information is also expected to launch as of the first of the year. I told her I was really glad to hear that. 

Lastly, I explained that the requirement to fax documents is really an additional burden on most patients, as very few people own fax machines anymore. That leaves most of us sending potentially sensitive medical information through commercial faxes - or in my case my husband's office - which is also not a very private location for us to receive responses. I told her that the supervisor I talked to yesterday also told me that all faxes are received and filed digitally, and most of us are getting the EOBs digitally, so printing and faxing was really an unnecessary step. I asked if they would consider some sort of system for us to submit EOBs electronically?
Unfortunately, it didn't sound very likely that there would be an option for patients to submit EOBs electronically any time soon. However, she did tell me that most doctors do have the means to do so through a secure portal. I told her that, if that is truly the case, perhaps the FAQs should include that information so that patients will know that they may be able to ask their doctors for help. She seemed to agree with that idea.

Ultimately she told me that they had gotten a lot of feedback like mine, that they were working on a lot of the changes I suggested, and that I should look for the updates after the first of the year. I assured her I would and thanked her for taking the time to listen to my feedback. In the meantime, I told her I was waiting for my doctor's office to mail me the Claim 1500 form and that hopefully I wouldn't encounter any more problems when I faxed it to them. She said she hoped so too, and told me to hang on to her direct phone number in case I do come across additional issues.

I have to admit that this conversation did help restore my faith in humanity, at least a little bit. It was nice just to be heard and validated on a subject that has obviously caused me pretty intense frustration. I am honestly not holding my breath, but I am cautiously optimistic that we will see some improvement in this system in the new year. 

And if there's one thing I've learned from all this angst? Give feedback. There's no guarantee that anyone will listen to you, but if we don't tell them what's wrong they won't know to fix it.

Tuesday, December 1, 2015

I. Can't. Even.

You guys. I know it sounds like I am broken record complaining about this topic - but this crazy stuff keeps happening to me. And so I keep recording it in the hopes that someday someone somewhere will look at these problems and say: this isn't really an acceptable way to "help" patients.

Today I used some of my very limited childcare time - time I am supposed to spend working to earn money to pay my ridiculous medical bills - to yet again try to figure out how to pay my most recent Rituxan bill. 

I already attempted to do this, for the second time, on November 18th. On that day, if you remember, the Rituxan co-pay representative I spoke to told me they had not received the EOB that my husband faxed on November 12th (despite us having a message with a "reference number" saying they had, in fact, received it). I saw no point in arguing with her at the time, and so we faxed it again (including faxing it to a "direct line" the representative gave us that never worked) and we put a copy in the snail mail to an address she gave me, just to be safe. Then I purposefully waited long enough to make sure that, even if the fax didn't arrive or got lost, the duplicate snail mail one would have time to arrive.

So today, two weeks later, I called back. I pressed the secret 0 key and was connected with a representative. I explained that I wanted to find out the exact dollar amount that had been put on my card so I could pay my bill. (Because last time, even when they did receive my EOB via fax, they put the wrong amount on the card and I couldn't pay my bill until they fixed it.)

I kid you not, the representative responded: You haven't faxed us your EOB yet. 

I almost lost it. It took a real effort to remember that whatever was going on here was not the direct fault of the individual I was talking to. I took a deep breath, told him that I understood it was not directly his fault, but that this was beyond ridiculous. That we had faxed the EOB three times and sent one via snail mail. 

The representative disappeared for a few minutes and, quite miraculously, "found" some of my EOBs. He said they would get the EOBs processed by the end of the day and someone would call me back to let me know when it was done. I hung up, relieved that it was finally over - for at least another six months until I have to do it all again.

Unfortunately, less than 10 minutes later, he called me back. I had two Rituxan infusions, but he insisted the EOB we sent only covered one of them. And, in any event, it wasn't detailed enough for them to fund the card. Instead I would need to send a "claim 1500 form" showing the charged amount for the medication, including a J-code or listing the name of the medication. 

I took another deep breath and reviewed the FAQs on their website
Will I be asked for other information throughout the 12-month period?

Yes. You will be asked to send copies of detailed Explanation of Benefits (EOB) statements. This information is required to fund the card.
If the EOB I sent was sufficient last time, why wasn't it sufficient this time? Why didn't the website FAQs mention the possibility that a claim 1500 form or J-code might be necessary? I already know that type of form isn't easily available on my insurance company's web portal - how do I even get such a form? Assuming I am able to actually the needed form, why isn't the 888-332-9864 fax number listed anywhere on the website? Is that where I should send it? What about the two other fax numbers I have been given? What do I need to do to assure that the fax is actually received and processed instead of being told they never received my fax?

To his credit, the representative did his very best to answer my questions, though I know he was overwhelmed by my frustration. He advised me to call my medical center for the claim 1500 form, that they would have to provide that form to my insurance to get paid so they should  be able to get me a copy.  He recommended sending the fax with a cover letter addressed to the claims center, including my Rituxan co-pay card member ID. This was good advice and I thanked him for it. But I couldn't stop myself from asking: why does this process have to be so difficult for patients? Couldn't the co-pay "support" program list some of this information on their website to make it easier for patients?

He didn't have any more answers for me, so finally I asked if there was somewhere I could provide some feedback. A manager perhaps? It turned out the project manager was at a staff meeting, but he connected me with his supervisor. I told her about my difficulties and frustrations with this process, and asked if there was anywhere that I could provide feedback so that hopefully this process could be made easier for future patients. She said she didn't think the company had any sort of feedback process in place. So I asked who was in charge of the project, and could I please have an email address for that person? She promised to forward my information to the project manager - and she said that the project manager would contact me to hear my concerns and suggestions. 

I sincerely hope she does. I would really love to provide some constructive feedback to help future patients - and I do promise to keep my frustration at bay as much as possible. Because, as I have said before, I am beyond appreciative for for this financial assistance. I wouldn't have access to this life-changing medication without it. But this process is just so so so difficult - and patients with chronic illnesses already have enough on their plates. Someone somewhere must care about my suggestions for things they can do to actually make this easier for us!


2016 CCC...Here I Come!

Today is GIVING TUESDAY!! If you're still looking for somewhere to give today, I've got you covered!!

After volunteering for the 2013 and 2015 Arthritis Foundation California Coast Classic tours, and being inspired by some AMAZING individuals riding with arthritis, I've signed up to ride in 2016!!! 

Considering how much I have struggled physically over the past eight years since my RA diagnosis, this feels like a completely CRAZY thing to do. But, as my husband reminded me, some of the best decisions we have ever made started out feeling totally crazy!

So if you're looking to give today, please consider donating to the Arthritis Foundation in support of my ride! Any amount, no matter how small, will help me reach my goal! 

Now I guess Santa better bring me a bike... ~;o)

Tuesday, November 24, 2015

Facing Forward: Laurie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!

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 (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, 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

Beyond Pain Scales: 6 Ways to Communicate Pain

In my latest guest post for Mango Health, I consider some ideas to productively make use of the dreaded 1-10 pain scale!

Tuesday, October 27, 2015

Facing Forward: Shelly

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!

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!

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.

Monday, October 19, 2015

#JointDecisions Twitter Chat on 10/20 @ 6pm

Are you on Twitter? If so, please join us tomorrow for a live web chat about how to build your care team and enlist supporters in your RA journey!

Hosted by CreakyJoints and featuring yours truly and the lovely Britt of @HurtBlogger!! I look forward to chatting with you tomorrow!!

6 Ways to Support a Partner With Chronic Illness

Knowing how to help a loved one living with a chronic condition can be such a challenge. For six ways to support a partner living with chronic illness, check out my latest guest post for Mango Health!

Tuesday, October 13, 2015

Understanding the Family Medical Leave Act (FMLA)

If you – or someone you love – live with a chronic illness, you may eventually need to take time off from your job to focus on a health issue. Luckily, in cases of medical need, there are laws in place to help you have a job to come back to! 


A chili cook-off. A movie in the park...All of these events are supposed to be fun. But as I look at them stretching across every foreseeable weekend, I can’t help but feel a sense of anxiety.

Wednesday, October 7, 2015

The Arthritis Foundation’s California Coast Classic

In the darkness before the sun came up, 300 people strapped on their helmets, and mounted their bicycles with a shared goal-to raise awareness and funds to support people living with arthritis.

Monday, October 5, 2015

Let's Talk About Scheduling Sex, Baby!

Sometimes, I write about my sex life on the internet. Or, more accurately, I write about the ways in which I am struggling with my sex life. It seems sort of crazy to share such an intimate part of my life so publicly, but I do it because I know I am not the only one struggling with these issues. And I know from experience exactly how valuable it can be to feel like you aren't alone.

Most of my writing is published here or other health/chronic illness related websites. But the last time I wrote candidly about my sex life it got picked up by BlogHer, because I think it is a topic that resonates with a much larger audience. I also think it is a topic that is important to overall well being and health. So, on sort of a whim, I submitted this piece to a mommy blog with large following called Scary Mommy - and they picked it up and published it last week!

I'm very excited that Scary Mommy picked up the piece, but I do have to admit to being a little disappointed about the negative comments it received - both on the article itself and on Scary Mommy's Facebook page. Though I didn't engage with the comments in either of those locations, I do feel the need to make my thoughts on the subject clear here.

Many people announced (quite loudly!) that they would never consider scheduling sex, and that it was sad if you have to resort to doing so. To those individuals I say this: that is fantastic for you! I'm honestly glad that your sex life is great and requires so little effort on your part. Unfortunately, that isn't the case for everyone. Some of us are struggling just to get through the day, and so maintaining a healthy relationship in the face of huge challenges - like young children and debilitating chronic illness - can often take effort and focus. And there is absolutely nothing wrong with that. Everyone needs to do what works best for them. For my husband and I, a discussion about scheduling sex turned out to be healthy and invigorating. It led us to a way to address some other issues in our lives, leading to an overall improvement for our family. So I wanted to share my personal experiences in case someone out there is struggling and this might be useful or helpful for them to consider.

The other set of negative comments the article received centered around consent within marriage. Some people seemed to think that by scheduling sex I was advocating for having sex under any circumstances. So let me be clear and say this: I am not advocating that you have sex with your partner if you really don't want to. The situation I am sharing about is one in which we both wanted to have a better sex life, but we were really having trouble making it happen as a practical matter. For us, setting aside time to focus on each other and on myself worked well for helping us overcome some of the challenges we were facing, together. And, though the discussion started out about scheduling sex, the result turned out to be about far more than just sex.

In any event, there were at least a couple of comments from people with whom the article actually resonated - including some other mamas who are also struggling with small children and rheumatoid arthritis. And honestly? If I was able to make even one of them feel less alone - or hopeful that improvement is possible - then it was worth it to be open and vulnerable with my story.

Paying For Help

It does still feel weird to pay for help. Sometimes I feel like a “good mother” would be able to do all of this herself. But you know what? That’s nonsense.

Saturday, October 3, 2015

California Coast Classic - Day 8

Today, on the eighth and final day of the 2015 CCC, the riders covered 56.2 miles from Ventura to Santa Monica. Unfortunately, Austin and I both started the day with less energy than we would have liked. Though our boys are usually good campers, the little guy had a bit of a rough night last night. I spent at least an hour around midnight walking with him as far from the other tents as possible so that I didn't keep the whole camp up!

After we saw Austin off on his final day of biking, I headed to the finish line to help with setup. In my desire to be helpful, I stupidly did way more physical labor than I should have. I moved probably 20 cases of soda and single-handedly set up bike racks for 300 bikes!! So by the time the riders arrived I was beyond exhausted and sore, which wasn't very smart of me.

But, as always, it was amazing and emotional to watch the riders come in. The first to arrive was Dee (who was featured on Facing Forward on Day 3). Her accomplishment today was so inspiring for me. By the time Austin and the other riders arrived at the finish line, our boys were pretty grumpy (it was way past nap time), but it was still very exciting to welcome 300 riders and congratulate them on their amazing accomplishment. 

Then we were super happy to head to Dapa's house for a swim, dinner, and a comfortable bed. We head back to Colorado tomorrow! And we're proud to have been part of raising am lay 1.5 million dollars for the Arthritis Foundation.

Three CCC finish lines - 2012, 2013, & 2015!!

Facing Forward - California Coast Classic Edition: Austin

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!

This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.

Name: Austin
Hometown: Louisville, CO
Riding In Honor Of: my wife Mariah
Honoree’s Diagnosis: Rheumatoid arthritis
Age at Diagnosis: 25

Why is it important to you to participate in the California Coast Classic?
I love talking with people about my experiences and helping them understand that arthritis isn't just a disease for old people. Sharing stories with other people facing similar challenges is a great way to pickup new tips and tricks.

What are the biggest challenges you have faced since your wife’s diagnosis?
Feeling like I am supporting Mariah enough. Helping her stay positive (and helping myself stay that way too).

What are some of your favorite tips and tricks for helping someone with arthritis manage everyday tasks?
Little things can make a big difference: folding the laundry, unloading the dishwasher, etc. Anything that can be taken off her plate. Also we think of the RA as our problem to face together, not just hers to face alone.

As a caregiver, how do you manage to keep facing forward every day?
Laugh. It's waaaaaay better than crying and more fun to share with others.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
This will only be as limiting as you allow it to be.

Friday, October 2, 2015

Facing Forward – California Coast Classic Edition: Dan

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!

This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.

Name: Dan (Team: The Deviants)
Hometown: Pasadena, CA
Diagnosis: osteoarthritis, right knee
Age at Diagnosis: 59

Why is it important to you to participate in the California Coast Classic?
I’ve ridden in the California Coast Classic (CCC) for 12 years and cannot imagine not doing it. This is my first year riding with the diagnosis of arthritis myself. I joined the Pacific Region Board of the Arthritis Foundation two years ago, and have been on the CCC leadership team for six years. My focus is on finding and nurturing our relationship with corporate in-kind sponsors like Dole and Coffee Bean.

What are the biggest challenges you have faced since your diagnosis?
My challenges since diagnosis are to protect my knee. No running or other impact sports, avoiding stairs. 

How has your diagnosis made it more difficult for you to stay active?
My arthritis has made it more difficult to stay active. I love golf but cannot play back to back these days. I love hiking but need to minimize it. I love running and tennis but can’t do them anymore. I need to avoid stairs – up or down – because of the extra stress on the knee joint.

What are some of your favorite tips and tricks for staying active with arthritis?
Staying active for me means biking and short walks. I can swim too.

How do you manage to keep facing forward every day?
I still need to work and earn a living to support my family. I still want to be able to ride my bike and take an occasional walk or hike. I would like to do Mt. Whitney again with my son.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I had to talk to my past self I would not have done as much running on hard surfaces nor as much train running, although those runs – Pier-to-Peak in Santa Barbara, Mt. Baldy, and the Badwater half-marathon were memorable. I played hockey and tennis in my teen years but I really think it was the miles of running in my 30s, 40s, and 50s that contributed to my condition.