Tuesday, June 28, 2011

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!!

Friday, June 24, 2011

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!!

Third RA Anniversary

I have so many posts to write about the wedding and the honeymoon - and I will get to those soon, I promise! But, before I do, I need to write this post! Because somewhere in the middle of all the wedding madness, my third RA diagnosis anniversary passed without me even noticing. It seems hard to believe, but I am now 28 years old and it has been three years since I was first diagnosed with RA.

At the beginning of this year I had some doubts about whether the Enbrel was working for me - but ultimately I ended up staying on it. I was on cymbalta for a while too, to cope with depression and frustration over my limitations. This year I have dealt with bad knee days, hand pain, even more hand pain, until eventually I was diagnosed with De Quervain's tenosynovitis in my right hand. The first flare was the most painful, but I still have trouble with that tendon from time to time. For example, I now mouse primarily with my left hand to avoid flaring that tendon.

This year I've continued to deal with fatigue and also still had trouble sleeping, two problems that don't seem to go together but apparently do. I became anemic again and dealt with nasty bruises and hair falling out. I suffered from fevers, common colds (that seemed not so common to my poor immune system), and one mysterious illness the doctors couldn't quite figure out despite many unpleasant tests. And, as probably anyone with a chronic illness can tell you, this year I spent way more than my fair share of time fighting with the pharmacy and battling with insurance, over and over again, to try to reduce the massive amounts of money we spend on medication for my condition.  However, on the good side of health things, after battling for over a year I finally achieved a normal blood pressure!

A lot of other good things happened this year too!! I started pilates and stuck with it - once or twice a week - for the entire year (though I have to admit I haven't been back since the honeymoon. Next week, I swear!) We did our first first Arthritis Walk in December, and raised more than $4,000 for arthritis research with the help of more than 70 friends and family members. I finally graduated from law and graduate school and earned my JD and MS (a task that seemed nearly impossible when I was first diagnosed with RA). We celebrated APL's 30th birthday and, despite being wrapped up in wedding planning, did another Arthritis Walk in May.

As per usual, I also did my fair share of traveling - something I am delighted I haven't let my RA stop me from doing! We visited my sister and her boyfriend in Seattle and I visited my cousin and her family in Ohio. I traveled to Groveland several times for wedding planning and also spent some time in Los Angeles with my family. In April I went back to Los Angeles again for my bridal shower, and then to Seattle again for my bachelorette weekend. And in May we went back to Groveland for the wedding and then went to Spain on our honeymoon (posts about this soon, I promise!)

So what have I learned in the three years since I was first diagnosed with RA? The first year was obviously the hardest, but the second year wasn't a whole lot easier and had major ups and downs as well. Slowing my life down to the pace necessary to live comfortably with my RA has been a difficult process for me. Though I know I have made enormous progress, it is still something that I have to work on every single day. 

I know everyone would still like to hear me say that I am feeling a lot better three years later - but unfortunately RA just doesn't work like that. For the most part, I often feel physically the same as I did in the first two years of my illness - fatigued and seriously achy.

However, despite these same physical feelings of pain and exhaustion, I can confidently say that today my life with RA is a lot better than it was three years ago. This is because I have had time to learn about my RA and adjust my life to suit it. And I don't just mean learning about RA in general, I mean learning about my RA - the quirks of my joints, the little signals my body gives me before a crash, what works for pain and what isn't worth bothering with, how to relax and slow down when I need to, which advice to follow and which advice to ignore, etc. 

Physically, I often feel the same, but mentally I know I have come a long, long way since that day I got diagnosed three years ago. And that's pretty darn great. So, once again...From This Point. Forward!!