These Kids Are Awesome

I've been feeling a little bit grumpy due to some massive hip pain, but this video cheered me right up. These kids are awesome! And if they can keep going, then so can I!

Oops.

I may have done some good things lately, but I'm not perfect - and sometimes I still struggle with having RA. 

Take yesterday evening, for example. I was so desperate to get just a tiny break from the stabbing, grinding, endless pain I've been having in my hips all week that I took a Vicodin. Then, when that didn't help, I drank an entire bottle of wine. Oops. Needless to say this treatment regime didn't do much other than make me feel sick and go to bed early.

On the bright side, I think one benefit of having a chronic illness (if there is such a thing as benefits to having a chronic illness) is that I do hangovers like a rockstar - which is to say that I don't really get hungover. Or, if I do, it is similar enough to an ordinary bad day with RA that I don't really notice. I mean, I feel sort of crummy this morning, but I felt sort of crummy yesterday morning too. It's about the same. 

In any event, I guess it's time to do something more productive to address my hip pain. I'm off to pilates with the hopes that I will feel better afterwards. Even for just a little bit.

Curly Bones

I am so grateful for this blog. It has helped me adjust to my diagnosis by giving me a place to vent my frustrations, acknowledge my successes, and record my story in the hopes that someone may find it and feel a little bit less alone on their own journey. It has also been the avenue through which I have "met" so many wonderful people dealing with various forms of arthritis in their own lives.

Many of these people have their own blogs with their own stories. I recently had the honor to "meet" Christina, who writes a blog called Curly Bones. Christina has had JRA since she was 3, which has resulted in several joint replacements. Her blog chronicles her current efforts to start a family while dealing with her own arthritis.

Christina says she has started her blog because there are so few resources out there for women living with arthritis and trying to get pregnant. I tend to agree. Even the book Arthritis, pregnancy, and the path to parenthood - which offers fantastic advice about being pregnant and parenting with arthritis - seems to skip over the fairly significant hurdle of getting pregnant in the first place. 

But, for anyone with autoimmune arthritis, getting pregnant is no easy task. You have to stop taking a lot of your meds because they are unsafe for the baby - but for most of us those meds are the only thing controlling our arthritis to the point where we can lead a normal life! It's really scary to think about being without them. And some drugs, like methotrexate, have to be out of your system for a long, long time before you can start trying to become pregnant. Then, once you are safely off your meds, you have to deal with the physical pain and limitations of untreated arthritis while trying to, ahem, actively participate in baby-making. It's no easy task.

All moms sacrifice for the sake of their children, but women like Christina start sacrificing months, even years, before their children are even conceived. And Christina is bravely sharing her story for the sake of other women in similar positions. So let me be the first to say, thank you, Christina! And good luck!

JA Camp!

I just spent a week as a volunteer counselor at JA Camp (Juvenile Arthritis Camp) - and I think I'm still recovering!!

After being rejected to volunteer at Camp JRA in Pennsylvania, I did a little digging and discovered that there was actually a camp for kids with arthritis right here in Colorado! It is a much smaller camp - run by the same families for the past 20 years - so I was initially unsure whether they would let an outsider join their counselor staff. But they welcomed me with open arms and I got to spend a week getting to know 40 amazing kids with arthritis, ages 8 to 16. And the really amazing thing about volunteering at a camp in my home state is that I will get to see the same kids at other events throughout the year, which I am really excited about.

Camp. Was. BUSY! 

We swam every morning. We did crafts. We played games. We went boating. We went horseback riding. We had a hayride and roasted marshmallows. We got a hip hop dance lesson. We went fishing and bowling. The bomb squad brought their robots for us to see. The Denver Zoo brought some animals to visit (owl, macaw, alligator, possum, snake) and HawkQuest brought some predatory birds (falcon, barn owl, kestral, and a young bald eagle). We got to go into town for one night and the kids did go karts, bumper boats, mini golf, and water balloon wars. The junior counselors (14+ who helped us look after the little ones) got to go zip lining. We had FUN! And I took pictures and videos of everything and made a short slide show for the kids to watch on the last night of camp, which everyone really seemed to enjoy. 

We also learned about our arthritis and had a visit from a nutritionist. The kids' pediatric rheumatologists were counselors at the camp, so they had plenty of opportunities to ask questions and learn about their arthritis, both formally and informally. Aside from myself, there was also another counselor with arthritis - she was actually former camper - so the kids had opportunities to talk with people who understood them. The kids were also encouraged to be responsible for taking their own meds, and knowing which meds they had to take and why. And there was always someone around who understood if you were feeling too tired or achy to participate, and no one made fun of you for sitting on the sidelines. 

But it wasn't all fun and games. For one thing, I was truly exhausted and achy (horseback riding, in particular, did a number on me). And I wasn't the only one. The kids were also exhausted and achy too, and that was really frustrating for them when they wanted to be having fun. And there were some hard, heart-wrenching moments for me as a counselor as well. One of them was having to explain to the kids why it was ok for our vans to park in the handicap spots - because none of the kids thought of themselves as handicapped. And, while I was teaching a little girl how to make a lanyard, out of nowhere she said to me "my friends at school don't understand my arthritis." And another little girl even had to leave camp early with a fever and ended up in the hospital. With all the fun we were having, it was really hard to get these little reminders of the kids' struggles, their chronic illnesses, and their compromised immune systems. It just doesn't seem fair to them.

But overall, camp was full of positive moments for these kids. On the first day there was a little girl who was really scared to have her parents leave her, but when she found out that her roommates and I all had arthritis too - that we all took methotrexate and did enbrel shots too - she was willing to stay and give camp a try. That little girl had a huge smile on her face for the rest of the week - she may have ended up having more fun than anyone! And I loved seeing the kids at the campfire with their faces and hands completely covered in marshmallow. One girl in the group I took horseback riding had fallen off her horse the year before and was really scared to try again, but she braved through it and I was so proud of her. And, when we were driving back from fishing listening to Glee's version of "Don't Stop Believing," one of the little boys in my car asked if we could stay in the car to listen to the end of the song - so he and I sat in the parking lot and belted out the end of the song together.

Really I think that's the message that all the kids at JA Camp heard - don't stop believing. They might have JA, but they aren't going to let it stop them. And I'm so proud of all of them and so honored that I got to meet them and learn from them last week. And I can't wait to see them again at the next event!!

Housewife?

Looks like we got married just in time for me to officially become a housewife. While I truly respect women who are able to choose to be homemakers (and I totally envy families where this is financially possible), and while I would love to someday have the opportunity to be a stay-at-home mom, right now becoming a housewife was not my choice.  Right now being a housewife just seems to be a nicer way of saying that I'm unemployed.

Since my graduation in December, I have been working at one of the research centers at the law school as a research fellow. Regrettably, the research center recently lost its funding - and, as a result, I lost my job. So, yesterday afternoon I said goodbye to my boss about moved out of my office at the law school.

While my fellowship was never supposed to be a permanent career choice, we had been pretty certain that it would be solid enough to give me and APL some time to get on our feet as a married couple. Alas, that is not the case. Instead, less than two months into our marriage, I'm staying home everyday while APL goes out and brings home the bacon. Not that APL minds - I supported him when he got laid off two years ago, so he's happy to return the favor - but it just wasn't quite what we expected. 

Unfortunately, as I begin the search for a new job, I am also being forced to face some fears I was hoping to put off dealing with, at least for a little while longer: the issue of RA in the workplace. I was a student employee at the research center when I first got diagnosed with RA, and my (now former) boss was extremely supportive and considerate about my health situation right from the beginning. My RA was never a problem in this workplace. In fact, the fellowship was an almost perfect job for me - fascinating part time work with plenty of freedom and flexibility. I know it won't be easy to find another job that fits my situation so well.

This situation also raises a whole host of questions I hadn't begun to think about yet. For example, I've always felt that it is better for your boss to know that you are dealing with a chronic illness, but will that put me at a disadvantage compared to employees who are healthy? To tell or not to tell? And if you do tell, when is the best time? At the interview? After you are hired? When it first presents a problem? Never? And, can I even handle a full time job? Or will I have to settle for a part time job? And, if so, will I be able to find an interesting and fulfilling part time job? In this already broken economy, do I have any chance of being a competitive job applicant considering my health limitations? How will my body deal with all the new stress in my life? Will I crash at a critical moment?

Clearly I have a lot of thinking to do.

Museum Walking is Brutal

Even for the most physically fit people, there is something about the slow, ambling pace of museum waking that is brutal. It exhausts everyone. So what hope does a totally exhausted girl with RA, who is already wearing two knee braces, have of actually enjoying the art instead of desperately looking for somewhere to sit down for a while?

I'll tell you: a wheelchair. 

When we were on our honeymoon, I was about ready to cry after just an hour of walking around in the Reina Sofia Museum. My knees hurt so bad (probably from being cramped on the plane for so many hours) and I was so tired (probably from all the wedding excitement and from being cramped on the plane for so many hours) that I wasn't even seeing the amazing Picasso paintings on the wall anymore. All I could see were the benches and how big the room was, which would give me an idea of how long I would have to rest before APL was ready to move to the next room. I wasn't enjoying myself. 

However, I didn't relish the thought of a being pushed around in a wheelchair either. I kept watching little old grannies hobbling around the galleries and thinking that it would be shameful for me to get in a wheelchair if even the grandmas didn't need one. 

But at some point the opposite thought crossed my mind: if I wrecked my legs on the first day of the honeymoon out of embarrassment and stubbornness I would miss out on so much more of the trip.  And, yes, the grandmas may be walking around, but their knee joints aren't my knee joints. And when would I be back in Madrid to actually enjoy all the art we were supposed to be enjoying? Maybe never. So, after lunch, I asked APL if he would push me in a wheelchair.

This might sound silly, but I feel like it took guts to sit in that wheelchair. But I'm really, really glad I did.  Being in the wheelchair was so much better. Yes, people did stare at me (and I'm sure tried to guess what was wrong with me) but, when I was looking at the art, I didn't even see their stares. In fact, I probably enjoyed the art more than anyone else that afternoon - I was so appreciative not to be in pain!! APL and I also had a lot of fun watching people get out of our way and zooming down ramps. And, with APL pushing me, we also spent a lot more time together talking and discussing the art (whereas before APL had been looking at the art and I had been sitting on the nearest bench and we hadn't been talking at all).

Most museums will let you borrow a wheelchair for free - generally at the information desk or coat check area. They will probably ask you to sign a paper saying you borrowed a wheelchair, but they won't ask you why you need it. Other people at the museum will stare at you, but it's really none of their business. If you know you would enjoy the museum more sitting down and you have someone who is willing to push you, just do it. It will be worth it - it might even be fun.

And afterwards, don't forget to thank your manservant....I mean husband! ~;o)

Traveling or Camping with Enbrel

Traveling is so important to APL and me - and we really love to go camping - so when I first heard that Enbrel needed to be refrigerated, I felt my heart sink. I was really worried that it would make traveling - and especially camping - difficult or impossible.

But it is not impossible!! While I will admit that traveling or camping with Enbrel takes a little more thought and planning, it is totally possible. I have now traveled internationally to China, Australia, and Spain with my Enbrel safely in tow. And I've camped with Enbrel in Australia and all over the U.S.

Obviously you should talk with your doctor about the best methods of traveling with Enbrel. But, from my experience, I'd like to offer what I hope are a few useful pieces of advice about traveling with meds that need to be refrigerated:

Your Transport Container 

You should have a little insulated travel cooler specifically for transporting your Enbrel. You can get one for free from Enbrel Support (Call 1-888-436-2735.) In it keep:

• As many doses of Enbrel as you need for your trip
• An ice pack
• Extra ziplock bags (for ice - I'll explain more in a minute)
• Alcohol wipes (for injections)
• I also like to take the box my Enbrel comes in - with my name and prescription information - in case I need to prove that it is medically necessary to the TSA (though that has never happened to me)

Flying with Enbrel

The Enbrel website says you should call your airline in advance to check about flying with Enbrel. I don't recommend this - when I called they had zero idea what I was talking about and couldn't seem to understand why I had called at all. Instead, here is some advice I have gathered through experience:

• ALWAYS carry your Enbrel on the plane - it can freeze in the baggage compartment if you put it in your checked luggage.
• At security, I used to take my Enbrel out and declare it to the TSA (which is what they request) but I don't bother anymore. Most of the time it goes right through security without a problem. Occasionally the solid ice pack will show up on the X-ray and they will want to look at it, but they always give it back. The TSA is required to let you carry medically necessary liquids on the plane, and Enbrel is a prescription.
• For international flights (or flights longer than a few hours): 
• When you board the plane, tell the flight attendant you have medicine that needs to be refrigerated and ask if you can put it in the airplane's fridge. I've never had a flight attendant say no to this request. (Though if they do, tell them you will need ice during the flight to keep your medicine cold.)
• Don't just give them the Enbrel - give them the entire little cooler with the ice pack inside. Even if the ice pack melts on a long flight, if it is in the fridge it should stay cold long enough for you to find some ice or another fridge after you get off the plane.
• When they put your Enbrel in the fridge, they usually want to know what seat you are sitting in. I usually attach my boarding pass to the outside of the little cooler.
• Sometimes the flight attendants will bring your Enbrel to you right before the plane lands. If they don't DON'T FORGET YOUR ENBREL ON THE PLANE.

When You Have Access To A Fridge

Most hotel rooms these days have mini-fridges in them, so keeping Enbrel cold once you get there is generally pretty easy. Even if the fridge is a mini-bar, you can put your Enbrel in and take it out when you leave without getting charged anything.

• Make sure the fridge is adjusted properly - cold enough, but not so cold that it will freeze your Enbrel.
• BEWARE of fridges that turn off when you leave the room (I saw this in Spain and China). This is usually true in rooms where you have to insert your room key to turn on the lights. If you can leave an extra key in the room to keep the fridge on when you are gone, that should work. 
• If there is no fridge in your room, or the fridge turns off when you leave, or you check out and are leaving your luggage for the day at the hotel, just tell them at the front desk that you have medicine that needs to be refrigerated. In my experience, the hotel has always been more than happy to put my Enbrel in their fridge.
• If you aren't sure you trust the hotel or if there is a language barrier and you aren't sure what got communicated, ask to see the fridge so you can make sure everything will be ok.

When You DON'T Have Access To A Fridge

Don't panic!! Ice works just as well at keeping Enbrel cold!!

• If possible, freeze your ice pack before leaving and use that as long as it is solid.
• When you need ice you already have ziplock bags for it in your carrying case! When using ice I also like to double-bag it and/or put the Enbrel in a ziplock bag too to prevent leaking when the ice inevitably melts.
• You can ask for a small amount of ice anywhere that uses ice - cafe, gas station, coffee shop, bar, hotel. We always offer to pay for the ice, but we have always gotten it for free when we tell the employee that we just need a little bit of ice to keep some medicine cold. In our experience when we hand over a ziplock bag, it gets filled with ice for free.
• REMEMBER: when using ice to keep Enbrel cold, it is important to check on it every couple of hours to see if you need more ice.
• Another option that works especially well for camping or driving is to get a little cooler that is charged through the cigarette lighter in your car (that's what we did in Australia). Just make sure you don't kill your car battery and that the cooler gets cold enough!

And that's all I can think of!! It seems like a lot, but I promise it is really not that bad. I was pretty nervous the first time I traveled with Enbrel, but now it seems like second nature. And we still get to travel. ~;o)

Moon of Honey

For our honeymoon (in Spanish luna de miel, literally "moon of honey") APL and I went to Spain! We flew in to Madrid and spent one day touring the Reina Sofia museum (which was our favorite) and another at The Prado. We also enjoyed exploring the park and had an amazing diner at a restraunt we found on Yelp that ended up being just blocks from our hotel.

From Madrid we took a train to Granada - a beautiful old city. We saw a flamenco show, toured the Alhambra (an old Moorish palace) and enjoyed walking around the city - even in the rain! (Let me tell you, the rain in Spain does not stay mainly on the plain!) We had dinner and a hookah at an amazing Moroccan restaurant and visited an Arabic bathhouse. We also took an olive oil tour, where we tasted five kinds of olive oil and learned a lot!

In Granada we picked up our car and drove to Gibraltar - where I met a baby ape! From there we drove to Tarifa. The next day we took a ferry to Tangiers and spent the day in Morocco, where we got to sit on a camel, see a snake charmer, and got cornered by a rug salesman who was extremely intent on selling us a rug. The next day we went whale watching in the Strait of Gibraltar and we saw a mama sperm whale and her two calves. Amazing!!

Then we went SCUBA diving in the Strait of Gibraltar - and we needed full wetsuits because the water was cold. We saw an electric sting ray, a moray eel, and did our first wreck dive over an old shipwreck. Then we drove to Jerez, where we got extremely lost - despite having a map and a compass - because there were no street signs in the whole city! Eventually we did make it to the Tio Pepe Bodega (winery) for a tour and a tasting. 

From Jerez we drove to Sevilla, where we also got lost and ended up having to park our car and walk to find our hotel. But Sevilla is a beautiful city - with lots of sidewalk cafes to drink cerveza! The next morning we went for a flight in a hot air balloon, which was a really incredible experience. We also went to another Arabic bathhouse - this one had entire rooms full of water!

Then, since we still had a car and we had an extra day, we drove to Portugal. In a little city called Tavira, we got on a ferry that took us out to a barrier island for some time at the beach. The next day we took the train back to Madrid and had dinner with some friends. Then we flew back to Los Angeles, picked up River, and drove two days home to Colorado. 

It was a truly amazing trip - but we are all happy to be home!!

Things I Love About My HUSBAND ~;o)

In the post about our wedding, I mentioned that APL gave me a gorgeous turquoise necklace for my wedding present. For my wedding present to APL, I gave him a journal that I had been keeping for the entire year before our wedding. Every day I would write down one reason that I loved him and wanted to marry him, and the night before our wedding I gave him the book with 365 reasons.

Before I gave him the book, I read through it again myself and was surprised to discover how many of the entries related to helping me deal with my RA. APL deserves more credit than I can say for keeping me going and always keeping my spirits up over the past three years. 

With his permission, I wanted to share just a few of those entries:

13: You know that going to the doctor sometimes overwhelms me, so today you left work early to go with me.

45: You insisted that I take the seat on the airplane with more legroom.

71: You take care of pharmacy mix-ups when I can't deal with it.

94: You help me deal with health insurance nightmares.

95: Despite your fear of needles, you are always willing to help me with my shots.

102: You hold me up when I want to fall down.

131: You help me when I feel disappointed about being tired and achy.

170: The doctor said I was iron deficient, so you made me a nice steak for dinner.

217: I got really bad cramps in my legs tonight so you carried me to the hot tub.

221: Today I was feeling achy so you ran me a bath and read to me while I soaked.

306: If I have to limp to keep moving, you always walk slower and hold my hand.

I am so extremely lucky to have such an amazing man as my husband.

Our Wedding!!!

After more than eight years together, APL and I got married on May 28, 2011 - the same day as his parents' 34th wedding anniversary - on his parents cherry farm in Groveland, California.

On our wedding day, APL and I got ready in separate houses and saw each other for the first time on the back 40 acres of his parents farm, where APL gave me a gorgeous turquoise necklace as my wedding present.  We took some pictures and then met up with the rest of the wedding party to start the ceremony. APL and his boys met my dad down by the creek, while my girls, both moms, and my three adorable flower girls and I loaded into a horse-drawn wagon. 

Right before the ceremony was about to start, the sky opened up and a light rain started to fall. It was also way colder than it usually is in May - so I was a little nervous about our guests being freezing, wet, and miserable. But everyone was in amazing spirits - digging jackets and umbrellas out of their cars or standing under the oak trees to stay dry. And my worries disappeared as soon as our River walked down the aisle - or should I say dragged my little cousin down the aisle!! She then proceeded to whine and fret - loudly - at being kept away from her parents throughout the whole ceremony. Everyone was laughing. APL's aunt performed the official ceremony, and my great uncle (who is also my godfather) performed a Polish hand-binding ceremony. Then we were married!!

Because of the rain we had to move all the dinner tables we had set up in the meadow down to the barn - amazingly they all fit as perfectly as if it had been planned that way. Everybody helped move the party to the barn - guests carried tables, chairs, bottles of champagne, vases of flowers - I even saw my littlest flower girl helping her mom dry the chairs from the rain. So, rather than ruining the day, the rain created such a wonderful feeling of love and family and friendship at our wedding - and the rainbow we got to see right before dinner didn't hurt either!

To be honest, the rest of the evening is a total blur of toasts, hugs, well wishes, dancing, eating, drinking, and general craziness. I think everybody had a good time - we certainly did!

I'm sure those of you reading this blog are also interested in how I got through my wedding day with my RA. To be sure, that was something I worried about quite a bit before the wedding. But, when the day really came, it just didn't seem to cross my mind. I don't know if I got a lucky day or if it was adrenaline or what, but I felt pretty amazing almost all day. I will admit that at one point, quite a bit later in the evening, my knees started to hurt quite a bit - but one of my college friends helped me find my purse and I took a vicodin, slapped some solanpas around my kneecaps, and went back to dancing without ever thinking about it again. I think it also helped that took advantage of every offer of help that I was given that day - without feeling bad about it at all. If someone offered me a chair to sit in or to get me a drink of water or to carry something for me I let them - and I've never had so many people so willing to assist me in my life!

I was also really surprised when the good feeling or adrenaline (or whatever it was) lasted through the entire day after the wedding as well. Since it was a holiday weekend, a lot of our guests stayed in the area on Sunday, and APL and I spent the day hanging out with our friends from all over the country in the house we had rented on the lake. We talked, laughed, played games, and finished off the kegs and food left over from the wedding. APL and I even canoed all the way across the lake to the house where my dad and his family were staying - and still I wasn't in any unusual pain!

It wasn't until the next afternoon - as we were clearing things up at the farm - that I hit a wall. I was feeling ok until suddenly I found myself exhausted and crying for no apparent reason. But APL just put me to bed in one of the rooms in his parents house and I slept for half the day. Afterwards I felt a lot better, though I took it a lot slower after that. And, overall, the enormous crash and huge amounts of pain I was expecting simply never came (or at least, it hasn't yet!)

We had a wonderful wedding, and I am so very lucky to now be married to such a wonderful man!!