Monday, October 28, 2013

October Articles on

You can find a complete list of all the articles I have published on by clicking here. Below is a list of the new articles I published in the month of October.


Last week, when I called Aetna Specialty Pharmacy for my Enbrel refill, I was instead informed that I would be unable to get my refill until I obtained a new prior authorization form. Though I was frustrated not to be given warning that I would need this paperwork, I got the appropriate form from my doctor as soon as possible. This morning I called back to order my refill. After confirming my Aetna ID number, name, and birthday, I had the following conversation:
Me: Hi. I would like to order a refill of my Enbrel.
ASP Person #1: Let me put you on hold.
(lengthy pause)
ASP Person #1: You will need prior authorization.
Me: Yes I know. I had my rheumatologist send the paperwork last week by fax. 
ASP Person #1: Yes but it hasn't been approved yet. 
Me: Oh. How long does that take?
ASP Person #1: 7 to 14 days.
Me: Really? I'll miss two doses if it takes that long. Isn't there anything we can do to speed up the process?
ASP Person #1: That's not my department. Here's a number you can call.
At that point I'm pretty sure I muttered something about this being a stupid system, then promptly apologized since I know it was not Person #1's personal fault. So I call the second number and get an automated machine, which makes me enter my Aetna ID number and my birthday and then confirms my name before turning me over to a human. But I'm not sure what the point of that was anyhow, because the first thing Person #2 did was ask me for the exact same information. Then this happened:
Me: Hi. I'm trying to find out how long it will take before I can get a refill of my Enbrel.
ASP Person #2: Ok. Let me transfer you over to the pharmacy.
Me: No! I just talked to them. They told me that I need to call you. 
ASP Person #2: If you want a refill you need to talk to the pharmacy.
Me: They told me I need a prior authorization, which my doctor sent. I am trying to find out how long it will take to have that approved.
ASP Person #2: Can you hold please?
(lengthy pause)
ASP Person #2: It has been approved.
Me: Really? The pharmacy said it would take 7 to 14 days.
(thinking: good thing I bothered to call this second number instead of just waiting to hear back from the pharmacy)
ASP Person #2: No, it's approved now. Let me give you the approval number.
Me: Great. So I just call the pharmacy back with this number and I will be able to order my refill?
ASP Person #2: Yes. I can transfer you there right now.
Me: Thanks!
But (of course) it was too good to be true. She transfers me back to the pharmacy, and, after a lengthy hold (of course) I get a human. She (of course) wants my Aetna ID number, birthday, and name for the fifth time. Then this happens: 
Me: I'd like to order a refill of my Enbrel. 
ASP Person #3: Let me put you on hold
(lengthy pause)
ASP Person #3: Oh. This was just approved today. Unfortunately you can't order a refill at this time.
Me: Why not? They just transfered me over here and said I could.
ASP Person #3: Well the system isn't letting me. It takes some time for the different systems to connect. 
(thinking: does it? Pretty sure the interwebs are instantaneous...)
Me: So...what does that mean?
ASP Person #3: You can try calling back in a few hours. Or maybe tomorrow.
Sigh. Forty-five minutes later, it turns out I might maybe be able to order my Enbrel in a few hours. Or tomorrow. Or in 7 to 14 days. It's unclear.

The only thing that is certain is that I will be missing today's dose of Enbrel. Sigh.

Thursday, October 24, 2013

Jingle Bell Run Kickoff Party

As I let slip in an earlier post, I have agreed to be the honoree for the 2013 Denver Jingle Bell Run. Yesterday I took OZL to the zoo for a few hours and after work we met up with APL to attend the Jingle Bell Run Kickoff party. Some friends of ours - who have been members of Team Z since day one - also joined us there (and even won some Jingle Bell Run swag in a raffle!) It was really nice to get to meet the Arthritis Foundation staff and members of the Jingle Bell Run Committee who work so hard to put together such an important fundraiser. 

Personally, I feel a little bit awkward having the spotlight turned on me - especially in person. I talk all about my innermost feelings and struggles on this blog, but I do that behind a shield of words. Generally, I am not faced with anyone's reactions to what I write, and when people do send me their reactions I have my own time and space to process what they say and figure out how to respond. But talking about my story and my experiences in person is a different matter and one that, as of yet, I am still a little bit uncomfortable with. So I am planning to try use this experience as a chance to grow and improve my speaking and interpersonal skills! (Translation: be less awkward, Mariah!!!)

Aside from potentially improving my awkwardness in talking about my arthritis in person, I don't  think that I personally need the honor of being the honoree. However, I am glad that the Arthritis Foundation chose me because I am proud to serve as the face of a demographic of arthritis sufferers who I feel receive less support, recognition, and resources than they ought to.

The Arthritis Foundation is a truly a fantastic organization, doing amazing things for everyone who lives with arthritis and helping to fund the research that will hopefully lead to a cure. But, like any organization, they also have limited means. Unfortunately, within those limited means, I feel that my demographic sometimes gets lost in the middle when it comes to promoting awareness and providing support.

On one end of the spectrum, the Arthritis Foundation spends a lot of time and energy focusing on older adults with osteoarthritis (OA). This makes a lot of sense because it is the largest population of people living with arthritis. Providing support and resources for people with OA is especially important because it can bring the largest number of people to the cause, which can only help promote awareness and improve fundraising efforts. Not to mention that the focus given to lifestyle changes, therapies, and assistive devices for older people with OA certainly overlaps to provide some useful support for older people with RA and other forms of arthritis. 

On the other end of the spectrum, the Arthritis Foundation spends a lot of time and energy focusing on children growing up with juvenile arthritis (JA). I can only imagine that having arthritis makes for a very difficult childhood, so I honestly do think these children and their families deserve all the love and support they can get. And, realistically, the sad story of a child growing up with arthritis also speaks to the heart and can certainly help a great deal with fundraising.

But what about those of us who were diagnosed in our 20s or 30s? Those of us who haven't yet started a career or started a family or who are in the middle of doing so? Or even the kids who grew up with JA who are no longer young enough to benefit from the JA materials? I personally do not think there is enough support for this demographic - my demographic of young adults. The support for kids seems to end at adolescence. And the language used to speak to older adults about adjusting to their arthritis - the need to slow down and make compromises - is not really something that someone just starting out with their life wants to hear. (In fact, I was quite upset about the use of this type of language when I was first diagnosed.)

Being a young adult is a difficult enough transition when you are perfectly health. I really think that young adults with arthritis deserve more resources and support, though do I realize this is difficult to accomplish without taking away from the other demographics. But we need hope too. We need more stories of people finishing college and grad school and starting successful and satisfying careers, despite their arthritis. We need more advice about how to talk to our employers about our physical needs, and more information about our workplace rights. We need more hopeful and uplifting information about how to survive off our meds so that we can start a family or breastfeed our babies. We need more resources so we can connect to and support each other as we travel through the prime of our lives while battling arthritis.

This is one of the main reasons I write this blog and it is certainly the main reason I agreed to be the Jingle Bell honoree. And, seeing as the Arthritis Foundation chose me as the honoree, hopefully we are all taking a step in the right direction.

Tuesday, October 22, 2013

Feeling Special (Yet Again)

After researching, investigating, and endlessly discussing, APL and I finally determined that we had the best health insurance that was available to us for the time being. Despite the open enrollment period, we decided to stick with the health insurance plan that we already had. So we didn't change anything at all. The enrollment period just ended and the new plan year started on October 1st. 

Unfortunately, I have just been informed by Aetna Specialty Pharmacy (after 10 minutes on hold obviously) that simply being in a new plan year counts as having "new" health insurance, even though we did not change anything at all. This, of course, means that I need to get a new prior authorization from my doctor to get my Enbrel refill. Why is it that every time I talk to the "Specialty" Pharmacy there seems to be some sort of problem?

I am particularly frustrated about this one because I have been sick, so I put off taking my last dose of Enbrel an extra day to make sure it didn't make my cold worse. But now I am concerned that I won't be able to jump through the hoops in time to get my Enbrel refill in time for next week. This is partially my fault - I didn't realize there was only one dose left in the fridge - but I am frustrated that it never seems to be easy. And that I usually end up dealing with issues like this when I am not feeling that well.

Too bad my insurance forces me to get my Enbrel through this particular pharmacy, otherwise I'd have ditched this place after strike two. By my count we are on about strike six, but I have no choice but to stick with them.

In any event, here is an unrelated and adorable picture of OZL to make everyone feel better! Time to go get him from school!

A Hopeful Guinea Pig

Giving up on Remicade, after struggling to find the right treatment for more than a year, felt sort of like going back to square one... Even though I still felt like some sort of guinea pig, at least my rheumatologist helped me feel like a hopeful one. 

Friday, October 18, 2013

World Arthritis Day

Did you know that October 12th is World Arthritis Day? And that 1 in 5 (22%) of adults in the United States suffer from arthritis? Or that there are more than 300,000 children growing up with arthritis?

Thursday, October 10, 2013

Wear Blue Saturday!

This morning when I dropped OZL off at school, I picked up a flyer explaining everything that his school is doing to support National Breast Cancer Awareness month. As a woman myself (with breasts I love!) I think it is fantastic that such an important cause gets so much attention in the month of October. 

However, I have to admit that I do find it a bit frustrating that, while everyone knows to wear pink this month, almost no one seems to know to wear blue on Saturday to support World Arthritis Day. Every October the one day set aside for arthritis awareness seems to get lost in a month of pink.

But, rather than just being frustrated, I decided that I need to do something to increase awareness about arthritis. So I sent the school the following email. I hope that they decide to get involved in this cause too!! (Spoiler alert: I am the honoree at this year's Denver Jingle Bell run. More about that in a future post!)
Dear School Director~

When I dropped OZL off at school this morning I picked up a flyer about everything the school is doing to raise awareness for breast cancer - wearing pink, providing information, raising money. As a woman with breasts myself I have to say that I think what you are doing is fantastic!!  I know that 1 in 8 (12%) of women in the United States will develop invasive breast cancer during their lifetimes. 
But did you know that this Saturday, October 12th is World Arthritis Day? Or that 1 in 5 (22%) of adults in the United States suffer from arthritis? Or that there are more than 300,000 children growing up with arthritis? Or that arthritis and its related complications can sometimes be life-threatening? 
While I obviously support breast cancer awareness, sometimes I find it a bit sad that the single day set aside for arthritis awareness seems to get lost in a month of pink. I do a lot of volunteer work with the Arthritis Foundation, so I have met a lot of kids growing up with arthritis. Did you know that there are more kids growing up with arthritis than with juvenile diabetes, cystic fibrosis, and muscular dystrophy COMBINED? I know a teenage girl who had both of her hips replaced by the time she was fourteen. I have met kids who were diagnosed with arthritis when they were learning how to walk. These kids will never know a life without arthritis, but most of the world doesn't even know that kids get arthritis too. 
Seeing as World Arthritis Day is the day after tomorrow, I realize that it is probably too late for the school to do anything to recognize it (this year!). However, if you are interested, I wanted to offer another way for the school to get involved in a cause that affects so many children. 
I am the honoree this year for the Denver Jingle Bell Run/Walk for Arthritis (I have rheumatoid arthritis myself and it played a huge role in my ability to have OZL). The walk is a really fun event for kids - with costumes and activities (last year Santa was there!) - and the money raised goes to arthritis research, so that maybe someday kids (and adults!) won't have to live each day with arthritis. 
Would the school be interested in passing out a flyer about the event? Or I would really love to have any member of the school - staff or parent or child! - join Team Z and walk with us! Or perhaps the school would want to start a team of its own? 
Please let me know if you might be interested. And thank you for everything that you do! We are very happy to be part of the school family!

Tuesday, October 8, 2013

Facing Fatigue

I was tired of my joints hurting & making it hard to do everyday things. I was tired of doctors…I was tired of blood tests. I was tired of experimenting with medications …And, perhaps most of all, I was so very tired of being tired. Learning to live with fatigue can be a long, complicated, & frustrating process.


Saturday, October 5, 2013

2013 California Coast Classic Day Eight - The Last Day!!

Today Team Z rode the final 56 miles from Ventura to Santa Monica. APL wasn't feeling much better but he did decide to ride today anyways. Unfortunately for all of the riders there was CRAZY wind today - blowing people off the road and making progress really difficult and rather scary. 

Everyone was so parched from the wind that we ran out of water where I was working at rest stop two. I felt so bad that we didn't have enough water for the riders who were working so hard out there for us today! When our backup water didn't arrive I finally drove to a nearby campsite to find more water myself. And when we shut our rest stop down I put one of the water containers in my car and stopped at the top of a couple of hills along the route to provide a little extra backup! It turned out to be a really hard day and I was so glad I could be there for the riders!

It was pretty awesome to watch all the riders finally come through the finish line in Santa Monica. I wish I could write more eloquently about how proud I am to have been a part of such an amazing endeavor, but I am so so so very tired right now that I can barely think straight. Suffice to say that the ride raised over ONE MILLION DOLLARS for the Arthritis Foundation and we raised awareness about arthritis all the way down the coast of California. What an amazing experience!! 

Friday, October 4, 2013

2013 California Coast Classic Day Seven

Today Team Z rode 90 (yes, 90!) miles from Bulleton to Ventura. Unfortunately, APL wasn't feeling well last night and ended up not being able to ride today. He sat with me for a while at rest stop one and then his mom took him onwards to the hotel to sleep some more. Hopefully he will feel well enough to do the end of the ride tomorrow. Send good healing thoughts his way please!!

I honestly don't feel very well today either. I am seriously starting to crash - achy and completely exhausted - but somehow I am pushing through. I think it has something to do with the amazing enthusiasm and endurance of the riders and volunteers - they are keeping me going! I didn't remember to take very many pictures today, but we did get a few of my awesome outfit for Blue Day!

Onward to the finish line tomorrow!!

2013 California Coast Classic Day Six

Today Team Z rode 65 miles from Oceana to Bulleton. I was supposed to work at rest stop one, but I was pretty late because my stamina has taken a hit and my RA is unfortunately starting to flare. But I did eventually make it there to help ring the cowbell! And all of these enthusiastic and committed people are helping me keep going. 

Today I met the couple riding the tandem bike. It turns out they are on their honeymoon and they asked their wedding guests for donations instead of presents. I can't think of many things much more awesome than that!! Also, Caitlin Ryan was today's honoree, and she is one of the most amazing young women I know. Caitlin was diagnosed with juvenile arthritis at the age of three. She is now in 10th grade and has already had both of her hips replaced. I'm so glad to have had the chance to meet her and her amazing family. You can read more about Caitlin's story here.

After a long day APL and I took OZL to an awesome park near Solvang to run around a bit. Then the whole team went to the Firestone Walker Brewery to share some beer. And now it's 7:15pm, which is pretty much bedtime based on our level of exhaustion!!


Wednesday, October 2, 2013

2013 California Coast Classic Day Five

Today Team Z rode 59 miles from San Simeon to Oceana. I worked at the first rest stop again - only today it was cold and very foggy! But that didn't stop us from ringing the cowbell! Luckily the fog cleared up when we went through San Luis Obispo. Checkpoint two was at Wally's Bicycle Works where the riders (and volunteers!) were provided with AMAZING free tamales (thanks Wally's!)

The theme today was favorite sports/college team, so our family rocked our Colorado Rapids gear while APL's brother and his girlfriend wore Lakers and Eagles jerseys. I also met some riders sporting University of Colorado and Princeton gear. 

After we got to camp we went back to San Luis Obispo to share a very delicious dinner with some family friends. All in all, a great day!

2013 California Coast Classic Day Four

This post is likely to be a bit delayed due to lack of cell service!! 

Today Team Z rode 69 miles from Big Sur to San Simeon. OZL, grandma, and I worked and rang the cowbell at rest stop one, then caught up with Team Z at rest stop two for a snack. On our way in to camp we stopped to see the elephant seals. It was a beautiful day!

2013 California Coast Classic Day Three

This post is likely to be a bit delayed due to lack of cell service!! 

Today Team Z rode 49 miles from Monterey to Big Sur. OZL, grandma, and I started our day ringing the cowbell at Lovers Point Park in Monterey as the riders got started. Then, thanks to the other amazing volunteers who picked up my slack, we took a break from volunteering to take OZL to the Monterey Bay Aquarium. I remember loving that aquarium when I was a kid so it was really fun to visit again with my own little boy. And luckily OZL seems to be feeling a bit better today and he really enjoyed running around to see all the fish! After the aquarium we helped pack up rest stop one and enjoyed the route to Big Sur, which was pretty spectacular. California sure is beautiful!!