Monday, September 26, 2011

September 26th

I wrote my very first post on this blog on September 26, 2008 - exactly three years ago today. 

It's hard to believe that so much time has passed. I think that I have come a long way since I first started writing this blog three years ago - and there are 320 other posts that record all the ups and downs of my journey since then.

I certainly still have my struggles, I still have to take things one day at a time, and sometimes I feel like I still have a long, long way to go. But it is also really nice to take a look back and see how far I have come.

Saturday, September 17, 2011

Life Crisis?

I know the most recent posts on this blog have all been really upbeat and optimistic - and looking at them makes it really difficult to find a place to begin explaining how I have actually been feeling lately. So please bear with me.

It's been more than two months since I lost my fellowship, but I don't think I am any closer to answering the "what do I want to do with my life?" question than I was at the end of June. In fact, I feel like I am actually more confused about what I want. It feels like I am having a bit of a "life crisis" (though APL has quite emphatically announced that it is in no way a mid-life crisis, since I am only 28). Honestly, in past two months that I have been at home thinking and searching every day, the only absolute conclusion I have been able to come up with is this: I have no idea what I want to do with my life. 

When I told APL about this conclusion, he very graciously welcomed me to the club! He said that, aside from knowing he wanted to be with me, he has never really known what he wants to do with his life. He smiled the smile I love so much and said we would figure it out together. And that actually sounds very good to me. 

But even with APL's full support I still find myself...struggling. I really feel...lost. And, after two months of thinking about this topic pretty much every day, I think I have finally identified the reason why.

Three years ago, I knew exactly what I wanted to do with my life: I knew for a certainty that I wanted to get a job working on issues of climate change law and policy. I wanted to make a difference in the world. And I was on the right track to achieving this goal. I had graduated with honors from an Ivy League university and I had been accepted to a dual degree graduate program where I was doing extremely well studying environmental law and policy. I had no doubt in my mind that I would graduate and use my degrees to have a positive impact on the issue of climate change.

Now, please don't take this the wrong way - I know that I have RA, but it absolutely does not have me. My RA does not control my life. I am absolutely certain that I am still capable of achieving the goal of working on climate change law and policy. It's true that my RA might require me to take a slightly slower path to get there, but if I really want to achieve this goal I know that with enough determination I could do it. I don't think anyone should let their arthritis hold them back from their dreams. 

But here's the problem: I can't say with a certainty anymore that working to address climate change is still my dream. I just can't seem to find my determination, and my drive and my passion for the topic seem to be missing. I still care very much about the environment, and I still think that addressing climate change is completely necessary, but I think having RA has changed my priorities somewhat. It has made me realize that I have to take care of myself before I can consider taking care of the world. 

To a certain extent, I guess I do have an idea what I want to do with my life: I want to be happy and feel better. This is the only goal I can claim to have with complete certainty right now. But, since I haven't quite figured out exactly how to achieve this goal, I am having a lot of trouble finding the energy to consider trying to save the world.  Which, of course, makes the prospect of deciding the next step for my career or looking for a new job particularly overwhelming - especially considering that my degrees and experience and training are all pointing me in a direction that I'm not sure I have the energy for anymore. 

In the meantime I have really been enjoying the volunteer and advocacy work I have been doing for the Arthritis Foundation. Though it does take energy to work on these issues, I find that I am able to work on them, at least a little bit, even when I am not feeling that great. I think I am able to find energy for this work because it makes me feel really productive to help others and do something positive with my arthritis. I've found the experiences to be challenging, but extremely fulfilling,

Too bad the Arthritis Foundation isn't hiring in Denver!!

(In a totally unrelated note, the picture in this post is one my friend LK took when we hiked Mt. Elbert, and it is so pretty that it just makes me feel happy to look at it. Gotta use whatever little tricks you can!)

Thursday, September 15, 2011

Dear President Obama, Please Talk About Arthritis

When I was at the JA Workgroup meeting on Monday, there were three pediatric rheumatologists in attendance. Between them, they estimated that they diagnose 10-12 new children with arthritis every month. I don't know about you, but to me that seemed like a huge number of kids for only three doctors in one state! How can all those kids be expected to deal with pain and fatigue at such a young age, when I could barely manage it at age 25? And, to be honest, I still struggle with at age 28. It hardly seems fair. 

So what can we do to help those kids? One thing we can do is ask President Obama to talk about arthritis. President Obama and Secretary of Health and Human Services Kathleen Sebelius have made prevention and wellness a major policy focus for the nation, which is really awesome. But, when they talk about chronic diseases, they often speak of heart disease, diabetes, and cancer - but fail to mention arthritis. 

While I am not at all trying to downplay the seriousness of the other chronic conditions, it does seem unacceptable to me to leave out the nation's most common cause of disability. Arthritis affects 300,000 children and an estimated 50 million adults in America - which means that 1 in 5 American adults are dealing with some form of arthritis. Not to mention all the spouses, parents, siblings, friends, and other family members who are also affected by their loved one's arthritis. We need to ask President Obama to make arthritis a national priority because it affects so many millions of Americans.

The kids are asking:

And so am I. If you visit the Arthritis Foundation's Legislative Action Center, you can send a letter to President Obama and Secretary Sebelius in only a few minutes - the letter has already been written for you. However, I learned at Advocacy Training that your letter will be more likely to have an impact if you include your personal story (rather than using the form letter). So here is the letter that I sent:
Dear President Obama and Secretary Sebelius:

Just three years ago I was a healthy, active, 25-year-old dual degree graduate student, simultaneously pursuing a law degree and a masters in environmental policy at the University of Colorado. I had a plan: to graduate, to get a job working on climate change and energy policy, and to help change the world.

But then my world changed when I was diagnosed with rheumatoid arthritis (RA). I had to take time off from school to find a workable treatment. I had to reduce my workloads to deal with the pain and fatigue. I felt like I was too young to be dealing with such a disease, but since then I have learned that arthritis affects one in five American adults and 300,000 children.

I am pleased that you have dedicated time and resources to addressing the increasing burden of chronic diseases, like heart disease, cancer, and diabetes. However, I strongly believe that arthritis needs to be included in this list. Arthritis is the nation’s most common cause of disability and costs the U.S. economy $128 billion each year.

Arthritis also places a burden on millions and millions of individual Americans – including those suffering from arthritis and their loved ones. It has placed a burden on me, my husband, my family, and all of my friends. It has slowed my progress towards reaching my goals.

I still plan to reach my goals and help change the world – I may have arthritis, but it doesn’t have me! Only now I will need your help to reach my goals. I will need medications and therapies and research and support to help manage my arthritis. I will need people to be aware that children and young adults can get arthritis too.

I believe arthritis should be mentioned whenever publicly speaking about chronic disease prevention. Please, President Obama, talk about arthritis.
I decided to send an email and print and mail the letters. This may be a small effort on my part, but it is one tiny step towards changing the world - and that makes me feel good.

I hope you will take the time to speak out too - and please feel free to use any piece of my letter that might resonate with you! Please click here to send your own letter.

Wednesday, September 14, 2011

Healing Hands for Arthritis - October 12th

Guess what? On October 12th - which is World Arthritis Day - you can support arthritis research by getting yourself a massage. This may be the very best fund raiser ever!

Book a massage (or facial) on October 12 at any Massage Envy location and $10 from your massage will be donated to the Arthritis Foundation. I've already booked a massage for myself and one for APL, and I encourage you to do the same! If its your first time at Massage Envy, you can even get an introductory massage for only $49. 

And, when you get your massage on October 12th, check out the Murad skin care products and Wyndmere aromatherapy oils - because 10% of all retail sales will also go to the Arthritis Foundation that day too.  

Take one for the team! Go get a massage!! And tell your friends to do the same!!

Or, if you need more proof that you should go get yourself a massage on October 12, check out this video:

Steer Clear of Rocky Ford Cantaloupe

Remember the other day when I told you that the FDA had added warnings about the bacteria Legionella and Listeria to labels on TNF-blockers (Enbrel, Remicade, Humira)? Well here's a reason to be extra careful if you are taking TNF-blockers: it turns out that there is currently an outbreak of Listeria in Colorado.

According to the Center for Disease Control website, a total of 15 people have been infected in 4 states - 1 in Nebraska, 1 in Oklahoma, 2 in Texas, and 11 in Colorado.  The CDC has linked this outbreak to cantaloupes marketed as coming from the Rocky Ford region of Colorado. So, if you've got a compromised immune system, it's probably a good idea to steer clear of the Rocky Ford cantaloupe! King Soopers, Safeway, and Whole Foods have already removed the cantaloupes from their stores in the region.

If you've already been eating cantaloupe and you get chills, fever, muscle aches, or neck pain in the next few months you should head to your doctor right away! And that concludes my public service announcement!

Tuesday, September 13, 2011

JA Workgroup

After spending a week as a counselor at JA Camp and volunteering at JA Family Day, last night I drove down to Denver and officially joined the JA Workgroup, which is the Arthritis Foundation Committee that plans all the JA events for this region. The committee is made up of parents and doctors and a few adults who have arthritis themselves.

I have to admit that since the Arthritis Foundation headquarters are south of Denver and I live in Boulder (north of Denver) and I had to drive past the Broncos stadium on a game night and I have been feeling so exhausted lately, it wasn't a particularly nice drive to get down there for the meeting. However, I'm still really glad that I went. Since I spent JA Family Day hanging out with the kids, it was really interesting to hear about the event from the perspective of the parents. We also worked on planning the Halloween event - Arthritis Isn't Scary - and I'm really excited to be a part of it!

It's really nice to be a part of something so positive and to have the opportunity to work with a group of people who understand what life is like with arthritis. Also, to be honest, I still have a hard time imagining how these amazing kids manage to deal with arthritis at age 3 - when I could hardly handle it at age 25 - so if there's anything I can do to make the lives of these kids (and their parents!) any easier then I want to be involved!

Monday, September 12, 2011

My Friend The Slow Cooker

Since I am still currently unemployed, APL and I have a pretty old fashioned relationship these days: husband brings home the bacon, wife cooks it for dinner. That's right - my main job these days is to make sure there's a healthy dinner waiting for my husband when he gets home from work (you know, aside from figuring out what I want to do with my life/career and looking for a new job...)

Unfortunately, for the past few weeks, I have also been dealing with what I can only describe as a really bad fatigue flare. Luckily, the nabumetone did help me manage the intense pain I was having in my hips, so these days my joints are all (more or less) behaving, but I have just been so very tired. 

I've been resting a lot, but even after a few weeks of taking it easy I'm still having difficulty shaking this extreme exhaustion. Some days I wake up feeling reasonable but then crash by 4pm, which can make my only goal for the day - to have dinner ready when APL gets home from work - seem really overwhelming. Even more frustrating is the fact that I know I will feel better and have more energy if we eat healthy - if I run out of steam and we order a pizza I know that isn't going to help me deal with my fatigue the next day.

And that is where my friend the slow cooker comes in! Tonight, regardless of how I will be feeling after 4pm, I will have a delicious and healthy dinner waiting for APL when he gets home, and I was done preparing it before noon!! The slow cooker is a really big help on days when I feel ok in the morning but I'm not sure how I'll be feeling later on. It's quick and easy and healthy and delicious. And it makes enough to have healthy leftovers on hand for lunches and other tired dinner days. It's certainly a trick I will keep up my sleeve for when APL and I have kids.

If you need some inspiration to get your own slow cooker back out and give it a try, let me share with you one of our favorite slow cooker recipes - and what we are having for dinner tonight! The original recipe comes from Not Your Mother's Slow Cooker, but I have augmented it to make it even more healthy by using buffalo instead of beef and adding a few tricks from Deceptively Delicious

I always make this recipe with ground buffalo - and if your grocery store carries it I highly recommend giving it a try. Compared to beef, buffalo contains 70-90% less fat, about 50% less cholesterol, and is higher in protein, iron, and all the omega and amino acids. I also think it tastes way better than ground turkey. However, you can always substitute lean ground beef or ground turkey if you prefer.
Also, Deceptively Delicious is another great trick to have up your sleeve for healthy meals with less effort. The premise of this cookbook is to always have steamed and pureed vegetables in your freezer to add to meals - a couple hours of preparation gives you quick access to extra nutrition. For example, I never make pasta anymore without adding a few cups of spinach and brocolli puree to the store-bought sauce. And though the cookbook is aimed at cooking for kids we've found it works great for adults too!
Mariah's Buffalo Joes!!
Serves 4
1 pound ground buffalo
1 onion, finely chopped
1 large red bell pepper, seeded and finely chopped
1 large rib celery, finely chopped
1 clove garlic, minced
1 can tomato paste (6 oz)
2 tablespoons cider vinegar (or more as needed)
2 tablespoons firmly packed light or dark brown sugar (or more as needed)
1 teaspoon paprika
1/2 teaspoon dry mustard
3/4 teaspoon salt
1/2 teaspoon chili powder (to taste)
1/4 teaspoon black pepper (to taste)
1 teaspoon Worchestershire sauce
Dash of hot sauce (such as Tabasco)
2 cups steamed, pureed carrots (see Deceptively Delicious)
1 cup steamed, pureed cauliflower (see Deceptively Delicious)

1.  In a large skillet, cook the buffalo with the onion, bell pepper, celery, and garlic, stirring to break up the meat.
2. When the meat is cooked through, transfer everything to the slow cooker.
3. Add the remaining ingredients and mix well.
4. Cover and cook on LOW for 6 to 7 hours.
5. Serve on whole wheat hamburger buns!!

Friday, September 9, 2011

New Biologic Side Effects Warning

I just learned from Nessie at lipstick, purfume, and too many pills that a new warning has been issued by the FDA concerning TNF-blockers (tumer necrosis factor-alpha blockers) - such as Remicade, Enbrel, and Humira. The warning being added to the labels of these medications states that people who take TNF-blockers may be at risk of infection from the bacteria Legionella and Listeria. Here is an article about the FDA announcement in Arthritis Today.

Now, I have no idea what those bacteria are or exactly what it is that they do. And this new information certainly won't stop me from taking my weekly Enbrel injection - because choosing to use a drug that suppresses my immune system has always been a trade off between risks and benefits.

However, especially as the flu season approaches, I do think the FDA announcement serves as a good reminder that my immune system is suppressed, and that if I am not feeling well I should brave the nurses (who sometimes give me a look like I am a crazy hypochondriac) and make certain that I don't have an infection that could become dangerous. It's also a good reminder to be as careful as possible in exposing myself to people who may already be sick. 

In any event, since it was a good reminder for me (thanks, Nessie!) I thought I would pass it along here. It's especially worth considering this reminder because most of us aren't just on TNF-blockers - most of us are also on methotrexate and/or prednisone, which can also suppress the immune system.

Guess it's almost time to get my lysol supersoaker locked and loaded again!

Wednesday, September 7, 2011

Find Me on Facebook!

I have decided to give this blog a Facebook page

The primary purpose of having a Facebook page for my blog is to make it easier for you to follow. If you "like" my blog on Facebook, you will get links to my blog updates in your newsfeed.

The Facebook page is also another way that you can contact me if you have questions about RA or just need someone to talk to who understands! I'm hoping it can also be a small forum where people living with arthritis can connect with each other.

You can find the page by following the links in this post (to or by clicking on the "Find me on Facebook" badge in the right-hand column of this blog.

Arthritis Foundation Advocacy Training

Last night APL and I drove down to Denver to attend an advocacy training session at the Arthritis Foundation. We weren't really sure what to expect, but we wanted to learn about the options so that we can try to do something positive with my RA.

It was a really interesting evening. A current Arthritis Ambassador and recent Arthritis Advocacy Summit participant told us about her experiences advocating for the Arthritis Foundation. A Senior Congressional Aide gave us advice about how to talk to our congressional representatives. And the Grassroots Advocacy Coordinator of the Arthritis Foundation explained the importance of grassroots advocacy in obtaining funding for arthritis research and encouraged us to participate.

APL signed up to be an E-Advocate, which I have already been doing. If you are reading this blog you obviously care about arthritis, and so I highly encourage you to sign up to be an E-Advocate as well!! It means that you will receive Action Alert emails when important arthritis-related issues are debated on Capitol Hill. The Arthritis Foundation will then provide you with a letter that you can send to your elected officials to tell them that, as one of their constituents, you care about arthritis and its impacts - though it is much more effective if you can edit the letter to include a few sentences of your own personal story. Either way it takes only five minutes of your time and it helps secure funding for much-needed arthritis research.   Please consider clicking here to sign up to be an E-Advocate for the Arthritis Foundation!!

Since I have managed to move forward from writing about my arthritis to talking about it on video, I decided it was time to get over my phone phobia and do something even more positive with my RA. So I signed up to be an Arthritis Ambassador!! This means that I have committed 2 hours each month to advocating for the Arthritis Foundation. Every other month, one hour will be spent on a webinar with other Ambassadors from around the country. At that point, I will receive an assignment - such as writing or (take a deep breath!) calling my Representative's Health Legislative Assistant or attending a local town hall meeting to ask important questions, tell my story, and let my representatives know that I care about arthritis. If I am lucky, I may also get a chance to attend the annual Arthritis Advocacy Summit in Washington, DC.

I am both nervous and excited to see where this will lead me, and I hope it will allow me to make a positive impact on the lives of people living with arthritis.

Monday, September 5, 2011

My First 14er!

This weekend - with the help of APL, my best friend LK, and, of course, River - I made it to the top of my first 14er!!

For those of you who don't live in Colorado - where the word "14er" (fourteener) is pretty much part of the everyday lexicon - a 14er is a mountain who's summit exceeds 14,000 feet in altitude. There are 547 14ers in the world, and 54 of them are in Colorado. Hiking 14ers is a big deal here in Colorado - people try to collect them all.

To be fair, my first (and probably only) 14er was Mount Evans. This means that, thanks to the highest paved road in North America, we were able to drive up to 14,130 feet. Then we hiked about half a mile of switchbacks up to the summit, which measures 14,258 feet (making it #13 in height out of the 54 14ers in Colorado).

I realize that hiking only half a mile and gaining only 128 feet of elevation may not sound like that much of an accomplishment. But, at 14,000+ feet above sea level, any sort of exertion can be difficult, particularly since we drove most of the way so we had less time to adjust to the altitude. 

This was also way higher than I had ever been before - my previous high was probably the Alpine Visitor Center in Rocky Mountain National Park, which is at about 12,000 feet. But I've also had trouble with altitude - headaches, nausea, etc. - at as low as 10,000 feet. So I wasn't sure how I would fare at 14,000+ feet. 

But, by going slow and stopping often to rest, I made it to the top! And, silly an accomplishment as it may seem considering I only hiked half a mile to get there, I am super proud of myself!

P.S. The picture, in case you can't tell, is all of our feet around the USGS geologic marker at the top of Mount Evans! It proves we were there!