Saturday, October 22, 2016

The 2016 California Coast Classic: My Experience

I’ve been wanting to share more about my experiences riding in the 2016 California Coast Classic, but to be honest I’ve had a bit of difficulty figuring out just how to begin. As a whole, the experience was both amazing and terrible. I loved it and I hated it. It was a completely crazy goal but somehow also totally possible. I don’t know if I’ve ever questioned my abilities more or, at the exact same time, been more sure of them. The way I feel about this experience is quite a paradox, so I guess the best thing to do is begin at the beginning and try to move forward from there!

It was a really long day of travel for our family to get from Colorado to California in the first place. Minivan to the airport. Train to the terminal. Several hours on an airplane (including about 20 minutes of flat out screaming from a two-year-old, who shall remain nameless, who was disinclined to buckle up during landing). Tram to the BART station. BART into the city. Trolley car to the hotel. Not to mention wrangling suitcases, camping gear, car seats, diaper bag, a bag full of plane entertainment and copious snacks – thank goodness we shipped the bikes! The boys were real troopers but we were all tired by the time we arrived.

By far my favorite part of the long journey was during turbulence on the plane, and again when the BART train shook a little, when my two-year-old put his hand on my chest and said “I got you, mama.” I was really nervous about the upcoming week, but if my son could be so sure of the world and his own small abilities, surely I could face the challenge bravely. We finally met Grandma and Grandpa in San Francisco, and it was a relief to know that my boys would be lovingly cared for so that I could focus on my goal. And getting to have In-N-Out for dinner didn’t hurt either!

To be continued…

Friday, October 21, 2016

Facing Forward: Joan

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic 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: Joan
Location: Philadelphia, PA
Diagnoses: Sjogren’s Syndrome, Celiac Disease, Gastroparesis, POTS/Dysautnomia
Age at Diagnosis: 20, 18, 18, and 19 respectively, but all my symptoms started at age 10

How are you currently treating your condition?
I am currently on a lot of medications, the big one being Imuran/Azathroprine to treat Sjogren’s as it is the underlying cause of all my other issues. I am then on a bunch of other meds and supplements for different conditions and symptoms. I also just started doing botox treatments for gastroparesis. I have a very strict gluten free diet and try to eat low fiber and low fat. I heavily rely on tube feeds and daily IV fluids as well.
What are the biggest challenges you have faced since your diagnosis?
I have trouble finding the balance between keeping up with other college students around me while not overdoing it and wearing myself out. I just want to be like everyone else and have as normal of a life as possible, and I do succeed in many ways, but there are parts of my life that will never be totally normal. Accepting that is one of the biggest challenges I have faced. Many people may think is sad that I have accept the fact I probably won’t get better or every be totally healthy but I think it is what helps me live every day to the fullest and not waiting to achieve my goals in life till when I am healthy.

What are your favorite tips and tricks for managing everyday tasks?
I try to prioritize and set aside a day a week to do chores that I don’t have energy to do after a day of classes and work. Every week in the side of my planner is a to do list and I can usually manage a couple tasks a day so I decide on what is most important. On the weekends I try to cook but during the semester I heavily rely on frozen meals for when I am well enough to eat orally, the microwave is my best friend on low energy days.

How do you manage to keep facing forward every day?
I always try to keep in mind all the good things I have in life. I have amazing friends and family. I love my job teaching Hebrew School, and all my coworkers and boss are very supportive of me. Last time I was in the hospital all my students made cards and a coworker/friend brought them to me. It’s hard to feel anything but happy when surrounded by 25 cards made for you by 1st graders. I also try to keep the goal of finishing my program at school in mind so I can be teaching full time.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
My journey to diagnosis was so twisted that I am technically only diagnosed 3 months ago even though I have been chronically ill for a decade, so I will go back to the day I went to a new doctor for a second opinion on my knee pain and found out I would need two hip surgeries. I would tell my 16 year old self that she is stronger than she knows but it will get harder and that’s okay. She will be so much better off one day and she will still make her dreams happen. I would let her know she has only seen the beginning of the battle but she should listen to her body even when the doctors disagree with her but eventually she will have an amazing team of doctors as well as an amazing support network.

Do you have a blog you would like to share?

Would you like to be featured on Facing Forward? If so, please send an email to  

Thursday, October 20, 2016

We are the RAREvolutionary people. Stand up for Scientific Research.

This post is sponsored through Buzzoole.

I was recently introduced to the RE(ACT) Community, a growing network to share information and boost research about rare and orphan diseases. A disease is considered “rare” when it affects less than 1 in 2000 people, and it is considered “orphan” when it is rare and it is characterized by a scarcity of medications and healthcare plans.

The idea behind this project is to connect an international network of researchers, patients, caregivers, and donors in order to support medical development and scientific research for rare and orphan diseases. It’s a patient-centered project, offering direct involvement to different types of stakeholders. Their mission is this: “We are the RAREvolutionary people. Stand up for Scientific Research.”
You can learn more about the project in this short video.

I don’t personally have a rare or orphaned disease – in fact, according to the Arthritis Foundation, about 1.5 million people are living with RA in the United States alone. However, even having a more “common” disease, I do understand what it feels like to fight for research dollars and to not have as many treatment options as I might want. And if it feels like an uphill battle to someone with so many others who can fight with me, I can only imagine what it must feel like to someone living with a rare or orphan disease.

I also think that supporting scientific research is something that will ultimately benefit all of us, and in this case you can support research with your voice and social media reach. The RE(ACT) Community currently has a database of almost 7,000 rare diseases, and once a disease is followed by at least 15 people researchers can submit scientific projects and start crowdfunding campaigns.

There are actually several types of arthritis listed in the database, including reactive arthritis, enthesitis-related arthritis, oligoarticular juvenile arthritis, systemic-onset juvenile idiopathic arthritis, and juvenile psoriatic arthritis. It seems to me that research into any type of arthritis might ultimately be beneficial for everyone living with arthritis – as well as more research into various autoimmune diseases and how to treat them!

If you are interested in joining the RE(ACT) Community you can do so here


2016 Joint Decisions Empowerment Summit*

Last weekend I was lucky enough to have the opportunity to attend the Joint Decisions Empowerment Summit for the third time. Since the original summit in 2014, I'm thrilled I've had the opportunity to get to know and become friends with the amazing bloggers who are involved. There have also been a few fantastic additions to the team since last year. If you aren't already following these amazing bloggers, you should certainly check them out asap!
Since the Summit was near Janssen's home base this year, we got to start with a tour of the labs where they research, develop, and produce biologic medications. I really enjoyed the tour and have already shared about my experience here.

The Summit then launched into a review of the Joint Decisions program over the past years, and a discussion of what the program has in the pipeline for 2017. I think the program is doing some really great work to support people who are living with RA, so if you aren't already following Joint Decisions on Facebook you can do so here to stay in the know - and at the Summit they also announced the launch of their Instagram

The Summit went on to offer the bloggers a Self Care workshop, where we got to chat about mindfulness and other self care techniques with the amazing Dr. Laurie Ferguson who works with Creaky Joints. Then we got to watch the live Facebook chat with Rhonda Waters of the Johnson & Johnson Human Performance Institute. Rhonda has great information about how to better manage  energy and expand energy capacity, and so it was fun to watch her answer questions from viewers who were watching live. (If you missed the live event you can still watch the video on Facebook!)

On the last day of the Summit we got to chat with Dr. Ellen Field, a rheumatologist who shared her strategies for developing better relationships between doctors and patients. Finally, we had the opportunity to meet Steve Rosenfield of the What I Be Project - a social experiment that has turned into a global movement about honesty and empowerment. We also had the opportunity to participate in the project ourselves, so keep an eye out for me on the project's Instagram page!

Though I have to admit to being pretty exhausted and a little overwhelmed from traveling so soon after returning from the California Coast Classic, I'm really pleased I had the opportunity to attend the Joint Decisions Empowerment Summit again this year. I look forward to seeing where the program goes from this point forward!

*Janssen covered my travel expenses for this weekend.

Wednesday, October 19, 2016

The Never-Ending Quest to Pay For Expensive Medication

Well, I finally have at least a little good news on the "managing to pay for extremely expensive medication" front! 

For one thing, the bill arrived from my last Rituxan infusion and - because we've already met our deductible and out of pocket maximum for the year - it was only $165.52!! Which seems a lot easier to stomach than $6K! (Though let's just not think about the amount of money that went into meeting our deductible and out of pocket maximum, shall we?). But even though it's a relatively small amount of money, I would still prefer to have it covered by my copay assistance card so I can save my HSA money for other inevitable expenses. 

So I went about the business of submitting my Explanation of Benefits so that my card could be funded and I could pay my bill. And the other good news is that the copay assistance program now has an online portal, where you can see information about your account and upload forms directly - instead of having to find a medieval fax machine. So it seems that my attempts to provide feedback on some of the issues I encountered were worthwhile.

It's a really big improvement - but that being said it still leaves something to be desired. And while I know these accounts of my issues are not particularly riveting, I think it's important to record them so that there's some awareness about how much patients struggle with programs that are supposed to be helping them.

I logged into my Dashboard last week and uploaded my EOB. Then, since I learned last time that my EOB wasn't enough, I also uploaded the claim 1500 form (which I had called to ask my doctor's office to send as soon as the bill arrived because I knew I would need it.) I didn't get any sort of confirmation that the files had been successfully uploaded other than some small green text that said "Patient File Uploaded." 

I gave them a week to "process" my information, then tried to pay my bill. But, of course, I couldn't - so I had to call and see why. The first thing that happened was the representative tried to explain that my EOB wasn't sufficient because it didn't include the name of the medication. I told her I already knew that, which was why I also submitted the claim 1500 form. But, of course, the claim 1500 form "wasn't received." I have literally never had an interaction with this assistance program without getting told something I definitely submitted simply "wasn't received." 

But since they had received my EOB and determined that it was insufficient, I asked why I hadn't been in any way notified of the problem. The representative said there was no fax number to fax me back. I told her that was because I had uploaded the form online and I asked why the notification hadn't gone into the "notification" section of my Dashboard. I was told that "wasn't her department." 

So then, while I still had the representative on the phone, I uploaded the claim 1500 form yet again. When I got the tiny "Patient File Uploaded" confirmation, I asked if she could at least confirm that the document had been "received" this time. She couldn't. Apparently someone is supposed to call me back in 24 to 48 hours to let me know. 

There's a part of me that doesn't want to complain about this issue, because the online system they have now is certainly an upgrade from the previous system and I honestly do appreciate that. And, as always, I am grateful for the monetary support because I certainly would not be able to afford this medication without it - and it seems to be working


But I'm sharing this experience because clearly there is still work to be done. Because it literally never goes smoothly. And I really wish it would - because there are a lot of other ways I'd rather be spending my time.

The Importance of Lubrication and an All-Natural Option – Giveaway & Discount Code!

As stated in my product review policy, my reviews will always be honest. I was provided with a free sample of SYLK for review, but I was not otherwise compensated for this post.

It’s been a little while since I’ve written much about sex – and with a four-year-old and two-year-old I don’t suppose you can blame me! To be honest, finding the time for sex can be difficult enough, let alone the time to write about it! But even though sex is often that thing no one talks about, I still believe that a healthy sex life is a very important aspect of any adult’s quality of life. I also strongly believe that having a chronic illness shouldn’t mean having to sacrifice your quality of life.

Unfortunately, many of us have experienced the negative impact a chronic illness can have on a on a person’s sex life. We may have physical and positional limitations based on pain in our bodies. Our diseases may have an undesirable impact on our personal body image – making it difficult to feel confident or sexy. Sometimes the medications we take to help us function on a daily basis can have adverse sexual side effects – like reduced libido or vaginal dryness.

When trying to figure out how to improve your sex life while living with a chronic illness, one piece of advice that shouldn’t be underestimated is the importance of lubrication. Whether vaginal dryness is a medical issue or not, having sufficient lubrication can be really useful if you are having difficulty overcoming pain or getting involved in an intimate act. While some people may find the need for additional lubrication a bit embarrassing, it really shouldn’t be – at least 65% of women use personal lubricants. When it comes to physical intimacy, adequate lubrication allows you to focus your attention on things like finding a comfortable position, allocating your energy, connecting with your partner, and (most importantly!) enjoying yourself.

I was recently given the opportunity to try an all-natural, water-based lubricant – or perhaps this particular review should really say “we” as my husband was also a (very willing) participant! SYLK is apparently the only all-natural personal lubricant in the world, made with 8 ingredients and no parabens, synthetics, silicones, hormones, chemicals, or fragrances. The main ingredient actually comes from New Zealand kiwifruit vine extract. (Side note: did you know kiwi grew on a vine? I did not! You learn something new every day!). The kiwifruit vine extract yields a high amount of polysaccharides, which gives the product a texture that mimics the body’s natural lubrication. 

As this is obviously a product of a highly personal nature, I won’t get too graphic with my review. I will say that SYLK has a clean, natural feeling and almost no scent. My husband and I both agree that it actually seems a bit more slippery than other lubricants we have tried in the past, which means you likely need to use less of it. We would recommend trying to use a bit of caution when dispensing it from the tube, as it does tend to come out a bit quickly (though obviously that can be a challenge in the moment!) Overall, we both thoroughly enjoyed the experience of using this lubrication (on multiple occasions!)

I’m excited that I’ve been given the opportunity to give away a FREE tube of SYLK for one of my readers to try! To enter the giveaway, please head over to my Facebook page and comment on the SYLK giveaway thread. I will randomly select a winner on Saturday, October 22st! (Please note: the winner will need to provide their mailing address to me via email).

If you aren’t comfortable entering in the givaway (which, given the product’s personal nature, is totally understandable!) my readers are also being offered 25% discount for the next two weeks. Just visit SYLK’s website and enter the code: FTPF (SYLK is also available on Amazon, but the FTPF code will only work on their website.)

In the meantime, I hope we can all remember the importance of lubrication and start to feel less embarrassed as we figure out how to achieve the quality of life we each deserve! 


END NOTE: I know that many readers come to my blog because they are interested in starting a family, so if you are one of them I want to make sure that I note one potential issue that comes with using an over-the-counter personal lubricant if you are trying to conceive. According to WebMD and many other sources that focus on conception:
Most lubricants can change the pH or acid balance inside the vagina, and that in turn may affect sperm motility and ultimately prevent, or at least reduce the chances of a pregnancy occurring… If you find you must use a lubricant, avoid petroleum jelly. Instead… [try] a natural product, such as olive oil, which is less likely to cause any serious problems.
SYLK is all-natural, so it is possible that it may be a better choice for conception than other over-the-counter lubrications. However, when I asked the SYLK representative about conception she was unable to give me any specific information as to how the product may or may not affect your chances of getting pregnant. So if you are trying to conceive and need a lubricant, I recommend checking out Pre-Seed, which is a fertility-friendly lubricant. It may quite possibly have the worst name ever, but we used it with success for both of my pregnancies!! (The link I’ve provided is an Amazon Affiliate Link. If you’re thinking about trying Pre-Seed, I'd love if you would use this link and help me afford the children that product helped me conceive haha!)

Friday, October 14, 2016

The #BioExperience*

Today I went out to the Janssen Campus in Malvern, Pennsylvania for the BioExperience tour, where we learned about the complexities involved in discovering and developing the biologic medications that so many people living with RA (and other illnesses) depend on. Part of the reason that these medications are so expensive is that an immense amount of work goes into discovering the treatment, growing the proteins from live cells, figuring out how to remove all the impurities, following procedures to make sure the product isn't contaminated, and safety testing the product for patient use. I already knew it was a really complex process, but it was honestly pretty amazing to see in person.

After some general discussion about biologics and biosimilars and the associated policies (including the biosimilar legislation I worked on last year), we saw a "gowning demonstration." One of the scientists demonstrated the layers and precautions that he has to take before entering the manufacturing area. It's a rather complicated process, involving 3-4 layers over every part of the body as well as air locks, pre-packaged & pre-steralized gowns, and alcohol on hands and gloves at multiple times. The full gowning procedure has to be followed by employees who work in the manufacturing area every time they take a break, eat lunch, or use the restroom - they estimated they do it at least 5 or 6 times on an average day. This elaborate process is in place to make sure the medications we inject/infuse into our bodies aren't in any way contaminated. 

Next we donned lab coats and safety glasses ourselves (far less effort than the full gowning procedure for manufacturing!) for a tour of the various labs. We learned about the development of biologic medications, from a 1ml vial with 10 million cells to growing large quantities of cells in bioreactors to figuring out the best ways to store the product for patient use. My favorite part about this section of the tour was how passionate all the scientists seemed about their work. It's a great feeling to know that such enthusiastic and committed individuals are out there working on treatments for us!

After a very lovely dinner, where I got to chat a bit more with some of my blogger friends and some other folks from Janssen, it's time for me to rest up for the start of the third Joint Decisions Empowerment Summit tomorrow morning! More from this weekend later, I'm sure!

*Janssen covered my travel expenses for this weekend.

Facing Forward: Tracy

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic 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: Tracy
Location: Dublin, Ireland
Diagnoses: Rheumatoid Arthritis, Fibromyalgia, Endometriosis
Age at Diagnosis: Endometriosis at 28yrs (had symptoms for 12 years prior,) Rheumatoid Arthritis at 41yrs, and Fibromyalgia at 43yrs (secondary to RA)

How are you currently treating your condition?
Methotrexate and Cimzia injections for the RA. I'm having my 7th excision surgery for the endometriosis next month. I use anti-inflammatories and painkillers or general pain management. I'm a qualified Nutritional Therapist so good diet is a big part of maintaining my health. I also swim and I'm slowly starting to reintroduce yoga and pilates after a long absence.
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I faced since being diagnosed with endometriosis was infertility. I lost 3 pregnancies and had repeated IVF failures. I was so lucky to have my beautiful daughter after a long journey and repeated fertility treatments in 3 different countries. The pregnancy and birth were plagued with difficulty and I then developed RA when she was only 12 weeks old. I'm a single mum, and without question, parenting alone has been the biggest challenge I've faced since my RA and fibro diagnoses. My daughter is 3.5 now but I still find acceptance a huge challenge, accepting my limitations - I still struggle with the consequences of pushing myself too hard some days.

What are your favorite tips and tricks for managing everyday tasks?
1) Go slow. Since developing RA I’ve become so clumsy and have lost both strength and sensitivity in my hands. If I don’t move slowly and concentrate I bump into things, drop / break / spill things etc. 2) Prioritize – each day I’ll check my ‘to do’ list and pick the top 1 or 2 things that absolutely need to be done and leave everything else. Sometimes this may only include the most basic tasks. 3) Pace myself, even on the good days. I am still learning this the hard way! It’s so tempting to keep going on those days when I feel like I’ve got some of my old energy back but the consequences are always severe and far outweigh any benefit. 4) Don’t expect people who don’t have chronic illness to understand what you’re going through. They can’t. It’s an unrealistic expectation, it’s not fair on them and it’s not fair on you. Compassion and empathy are what we can reasonably ask for, and these are things we can also return.

How do you manage to keep facing forward every day?
By remembering how lucky I am to have my daughter – I could be going through all of this without her and it would be so much worse if she wasn’t here. She’s the reason I get up every day. Even though some days are very difficult, I push on because I want to be strong for her and be the best mother I can. I also believe that, to some extent, I can recover the ‘old me’, maybe not the same version or with all the bells and whistles I once had, but I continue to hope that I will regain my energy, and some other aspects of well-being, that are only a memory at the moment.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
It will get worse before it gets better but hang in there because it does eventually get a little easier, and don’t ever doubt that you have what it takes to get through it. You will adapt. Be kinder to yourself.

Do you have a blog you would like to share?
I haven’t started writing yet but plan to soon at Chronic Mama.

Would you like to be featured on Facing Forward? If so, please send an email to  

Wednesday, October 12, 2016

How to Manage Rheumatoid Arthritis and Stress

Although researchers still don’t fully understand the precise connection, a 2010 review of 16 studies published in the journal Arthritis Research & Therapy concluded that there is enough evidence to support the belief that stress likely plays a role in triggering RA flares or worsening RA symptoms. This is certainly something I can confirm from personal experience!

Being stressed seems to trigger an endless cycle: stress makes you feel crummy, which generates additional stress, which only makes you feel worse. For this reason, it is especially important that people living with RA have tools for dealing with stress.

Monday, October 10, 2016

Yoga For Arthritis

While I know that yoga is meant to be a gentle form of exercise that can also reduce stress, I find it sort of intimidating considering, I live with RA. Could my sore joints really get into that pretzel-like pose?