Tuesday, September 28, 2010

Eight More Months!

APL and I are getting married exactly eight months from today! I can't wait!

Monday, September 27, 2010

Two Years of Going Forward

Yesterday, APL and I were in Rocky Mountain National Park, relaxing and enjoying the golden aspens and the elk, the same thing we've done on the last weekend in September for the past two years

Yesterday was also the two year anniversary of my very first blog post. Over the past two years I have written 244 posts on this blog. This one is 245.

It's interesting to look back over the ups and downs I've had since getting diagnosed with RA and starting this blog. In some ways I'm still the same crazy over-achieving driven person (I just got a letter from the law school saying I made the Dean's List last semester.) But in other ways I've changed a lot (I move a lot slower and do a lot fewer things, but for the most part I'm ok with it).

I may be going slowly, but at least I'm still going forward, one day at a time. From this point. Forward.

Friday, September 24, 2010

The Incredible Sulk

I am not really a comic book person, but I'm beginning to wonder if my alter ego might actually be related to The Incredible Hulk (a.k.a. a giant, raging, humanoid monster). 

Today one of my classmates was complaining about how stressful it is to be training for a marathon. I wanted to grab him and shake him silly. Yesterday a friend was reasonably upset with her roommate over some dirty dishes in their sink. I wanted to smack her up the side of her head. Another friend posted about feeling a little sick in their Facebook status. I wanted to respond with many profanities.  I've actually taken out this  type of frustration on poor APL in the past.

Here's what's provoking my raging thoughts: I am actually really jealous of my friends' problems. I would be totally happy to feel sick as a dog today if there was even a remote possibility of feeling 100% better tomorrow - or even next week or next month. I would deal with horrible dirty dishes in my sink every day for the rest of my life if only it didn't hurt to wash them. Even though I have always hated running, I would make myself enjoy the stress of training for a marathon if my joints just felt well enough to do it.

I realize that these are totally irrational and unfair comparisons - between the things I deal with every day because of my RA and my healthy friends' real life problems. And I completely recognize that my friends are entitled to their own problems. I even want to hear about their frustrations and try to help, because that's what friends do.

But some days I'm dealing with a lot of joint pain, or fatigue, or I haven't been sleeping well, or the pain in a single joint is hijacking my brain, or sometimes all of the above. On those days, I can't stop myself from having my little self-centered silent rage tantrums every time my friends complain about problems I would trade mine for in a heartbeat. I still try my best to offer my support or at least just listen quietly. But I get all angry on the inside. Maybe I haven't quite dealt with the "for the rest of my life" part of the diagnosis as well as I thought I had. I feel like a four-year-old shouting IT'S JUST NOT FAIR!!

But guess what, kid: life is not fair. And you better figure out some way to deal with your feelings like a reasonable human being, because I doubt The Incredible Sulk has very many friends.

Thursday, September 16, 2010

Gold Star

After months and months and months of fighting with my stupid blood pressure, it was finally normal when I went to see my doctor this morning!

I get a gold star.

Better Than You!

I always make a point to be friendly to bus drivers whenever I get on the bus. Yesterday, I got on the bus and said "hi, how are you?" to the driver. He looked down at my bandaged hand and said "better than you!"

Now, don't get mad at the bus driver. He said it with a smile and actually in a nice way (believe it or not). He waved at me to sit at the front of the bus and then went on to ask me how I had hurt my hand and told me his wife had trouble with her wrist too. He was just making friendly conversation.

But here's the thing: he was totally right.

He was doing better than me. He was smiling and making friendly conversation. He had music on in the bus and was grooving a little bit at all the stoplights. He was driving a bus in circles all day and actually seeming to really enjoy it. The bus driver was happy.

As for me, I had hit snooze button for literally an hour and a half that morning before being able to pull my already exhausted and seriously achy body out of the bed. I barely had time to eat three bites of cereal before I had to go to my first class, that not a bone in my body or a brain cell in my head was interested in attending. I gritted my teeth through an hour-long debate on the merits of ethanol for the hundred millionth time in my academic career (corn-based, no; cellulosic, maybe. Same as last time.)

Then I had four tubes of blood drawn for my doctor's appointment the next day (though thank goodness for Favorite Lab Man, who can draw four tubes of blood without any pain or leaving any mark!) I had gotten on the bus to go work on citations and grab a bite of lunch before heading to a three-hour long policy seminar that would last until 6:00pm in a room that was usually way too warm, for which I hadn't done a single word of the reading. I was feeling totally miserable.

While I ate lunch I totally ignored the citations I had meant to work on and thought about the bus driver's joking comment. When was the last time I felt happy?

As I thought about it, I realized I actually feel happy quite a lot. APL and River make me happy every single day. My friends make me happy. My sister and my mom make me happy. My cousin and her daughter make me happy. Traveling makes me happy. Wedding planning makes me super happy, and I still feel a little bit giddy every time I look at engagement ring.

I realized that the problem isn't my life, per se, but my "career" - the things I force myself out of bed to do every day and the "path" that I am on. When was the last time that made me happy? I can't  even begin to remember. I know I wasn't very happy when I actually completed my J.D, which I didn't expect at all. And I remember feeling lost and unfocused about my path over six months ago - have I made any progress since then? Not really.

I am going to finish my Masters in Stubborn. I am going to graduate with my two fancy degrees in December. But after that? I need to do some serious thinking about what I want to do with my life.

But I have made at least one decision: someday, I want to be as happy as that bus driver.

Monday, September 13, 2010

Holy Mongolian Fire Oil!!

My hands have been extremely painful for about a month now. I suspect the pain originally started from overuse in two ways. First, I let my painfully adorable 2 year old cousin do sit-ups on my lap, using my thumbs to pull herself back up. Probably shouldn't have done that, but I just couldn't resist her cuteness and her desire to play with me. Second, while RK and I drove from Ohio back to Colorado, we got totally sucked into playing this trivia game, Sporcle, on my iphone. I probably shouldn't have spent so many hours keying in our answers on my little phone with my thumbs, but we were enjoying ourselves so much and it really helped us pass the long hours.

After I got home, I thought if I just tried to rest my hands, I would be fine. But it turns out that it is nearly damn impossible to actually rest your hands unless you just never get out of bed in the morning. Because you use your hands for everything. So, though I was doing my best to rest my hands, particularly my more painful right hand, the pain just seemed like it was getting worse and worse. In class one day last week I accidentally hit my hand on the desk and it hurt so much that I literally had to close my eyes and concentrate on not vomiting. Time to call the doctor.

I called Nurse Connie and told her the pain was making me want to vomit. She got me in to see the physician's assistant that same afternoon. And while I was talking to the PA, my rheumatologist even stepped in to check on me quickly too. I am really grateful for the team at that office since they always take such good care of me. They all poked and prodded around the base of my left thumb, trying to figure out if it was tendinitis or arthritis of my lowest thumb joint. 

In the end they couldn't tell for sure, so we decided to treat the tendinitis for now. The PA took an inch-long needle and stabbed the length of it into my thumb, so she could put prednisone all along the tendon. It wasn't pretty to watch, but compared to how much that sucker already hurt it barely hurt at all. She said it might take three or four days for the full effect.

This is where the Mongolian Fire Oil comes in. It has been three or four days and my hands, particularly along my left thumb, are still killing me. I'm starting to feel confined by what I can and can't do with them. But, in any event, I set out to cook a special dinner for APL - delicious Asian lettuce wraps that I had when I visited my cousin. Her recipe didn't call for Mongolian Fire Oil, but I was going to add some because APL loves that stuff. 

I was reaching into the cabinet over the stove to get the oil, and then....One minute the bottle was grasped in my hand....the next minute it just...wasn't. My grasp had failed and the entire unopened bottle of Mongolian Fire Oil hit the stove top and shattered into a billion pieces, spraying sticky orange oil everywhere. And I just looked at my hand and couldn't figure out why it hadn't worked. My hand just hadn't worked. My joints didn't stay bent to keep me grasping the bottle. And I looked at the mess and wondered if my hands would behave well enough to clean it up.

Luckily, APL arrived home at that moment and took over cleaning up the glass so I wouldn't cut my hands to smithereens trying to clean the glass myself. After that it was just a matter of sopping up the beloved oil with paper towels so we could throw it away, and I could do that. And in the end, I managed to cook the dinner and everyone agreed it turned out delicious.

But I'd like my pain-free hands back now. I really didn't like the feeling of helplessness I had today when I looked at the shattered bottle and the Mongolian Fire Oil spilling out all around it.

Thursday, September 9, 2010

I Don't Know How

After a wonderful week of wedding planning, APL, RK, and I got up at 5:00am to drive the two-ish hours from Groveland to Sacramento and catch out fight back to Colorado. Needless to say, getting up so early after so little sleep and such a busy week was not good for me. I was a wreck before we even got in the car. 

I piled into the back seat and tried not to think about my achy joints. I especially tried to ignore my knees, which were super achy from trying on wedding dresses and getting up and down off the floor with APL's parents' new puppy all week (I just couldn't resist - she is so cute!!) With me half-conscious in the back seat, we made it to the airport, returned the rental car, went through security, and got on the plane.

Two hours (and two very stiff and sore knees) later, we were descending into Denver. Our plane had to take a big detour around the Fourmile Canyon Fire, which had started only a few hours earlier. We could see the pillar of smoke rising up from the Rockies and sailing out over eastern Colorado into Kansas when it hit the inversion layer - it was pretty intense. However, we didn't get to look out the window that much. Between the smoke and the high winds, we experienced the worst turbulence I have ever witnessed. Several times I gasped aloud because it felt like the plane was going to fall out of the sky. All three of us had to concentrate on keeping our breakfasts in our stomachs. 

By the time the plane landed and we got off and rode the tram to the baggage claim, I thought I was going to collapse. APL and RK insisted on carrying all the luggage, leaving me concentrating on making my feet move. We had to wait for the shuttle to the parking lot for about ten minutes and there was no bench. By the time the shuttle finally arrived, a crowd of people had gathered. They started pushing on to the shuttle the moment the doors opened.  We were able to get on too, but not in time to grab me a seat.

I knew how exhausted I was and I was in a lot of pain. But I just stood there, sort of stupidly, staring at the sign that read "please reserve these seats for the elderly and disabled." The seats were all filled with people. None of them were elderly. None of them looked visibly disabled. They all just looked like tired travelers, happy to get on quick enough to get a seat for the ten minute ride to the parking lot.

I knew I was really close to my crashing point. I knew I should ask for a seat. But I just didn't know how. What was I supposed to say? "Excuse me. I know I'm young and I look perfectly healthy, but can I have your seat?" or "I swear my legs hurt more than yours do?" I couldn't stand the thought of the incredulous looks they would almost certainly give me. And I'm pretty sure if someone had responded that I didn't look disabled, I probably would have broken down on the spot. I knew I should have found my courage and asked for a seat, but I just didn't know how.

So I grabbed the support rail next to APL and steeled myself for the inevitable pain of keeping myself upright in a moving bus. And it came. Halfway to the parking lot, I could not longer grasp my hands around the pole. I draped my arms over APL's shoulders, shifted as much of my weight on to him as I could, and buried my face in his neck, crying slightly while I tried to hold myself upright.

I didn't care where our car was parked. I was in so much pain that I shuffled off the bus as soon as it made it's first stop in the parking lot. There was no bench at the bus stop. I collapsed on to the concrete and started crying in pain, exhaustion, and frustration. APL and RK followed me off the shuttle. RK sat with me while APL went to get the car. I had mostly stopped crying by the time he got back, but he carried me to the front seat just the same. 

I know the last part of that pain and exhaustion could have been avoided if I had only been brave enough to ask for a seat. But I still don't know how.

Guess that's something I'll need to figure out.

(NOTE ABOUT THE FIRE: Monday night we could see the flames from our upstairs window. The Fourmile Canyon Fire is still only 30% contained today and 169 houses have already been lost. The Red Cross is accepting donations to help for those who have lost their homes, and the Boulder Humane Society is providing shelter for pets of those families. Please send good thoughts to the firefighters who are working to safely contain the fire and to all of the people who have lost their homes.)

Wedding Planning Week!

I just spent a really wonderful week in California doing wedding planning! It was very busy, but also lots of fun and super exciting to see the wedding coming together! There were several moments over the last week when it dawned on me: oh my god, we're actually getting married!

First I flew out to Los Angeles to spend some time with my mama,  who helped me shop for my wedding dress. APL's mom came with us to some of the appointments too. (I love her, and she doesn't have any daughters of her own, so I was super glad she got to join us a few times!) 

I think trying on wedding dresses would be exhausting work even without having to deal with achy joints and fatigue. Some of those gowns are really heavy, and you usually have to wiggle into them, because the sample is some ridiculous size that no reasonable person actually wears. And then you end up having to stand around for a long time while someone zips, clips, buttons, or ties you into the dress. Then you have to stand around even longer to decide if you like the dress. Then you have to stand around while they undo all the zips, clips, buttons, and ties so you can wiggle out of the dress. Then you start over with the next dress. By the end of each appointment, my knees were made of fire and I desperately needed to sit down. Or take a nap. Who knew trying on dresses could beat a person up so much?

In some cases, you also have to save energy to deal with a "bridal consultant," who either doesn't understand what you are looking for, and keeps showing you dresses that you would never consider wearing, or is just downright rude or inappropriate. The best/worst bridal consultant moments?
  • I tried on a dress that, for some unknown reason, had buttons over a zipper over a  lace-up corset. As she laced, zipped, and buttoned me into the dress, the bridal consultant would not stop making jokes about how difficult it was going to be for my husband to undress me on our wedding night. In front of my mother. And APL's mother. Awesome.
  • I may have gained some weight from being inactive and on prednisone for the past two years, but I am not a large person. In fact, I am a totally reasonable an healthy size. But I had one bridal consultant say this to me: "If you ever want to find a gown, you're just going to have to use your imagination. No samples will ever fit you." Needless to say I won't be purchasing my gown from this woman.
Good thing I have a sense of humor!! And good thing that, in the end, I found the perfect dress. I am super excited about it and I can hardly wait to see APL's face when he sees me in it. 

The timing of this trip was also lucky because I got to go with APL's mom to pick up their brand new, 9-week-old, Rhodesian Ridgeback puppy. Her name is Saba and she is such a love! (That's who is in the picture in this post.) I'm pretty sure puppies are the greatest therapy known to man. There is simply no way to be the slightest bit unhappy with that ball of wiggling love in your lap.
On Friday, APL's parents and I (with little Saba on my lap) drove up to Groveland, where the wedding will be. APL and RK flew in and met us. Then we had a weekend's worth of wedding errands to run - but we had a ton of fun doing it. We booked houses for the wedding party to stay in. We visited a local organic flower farm and talked to the amazing woman who owned it - not only is she going to do all the flowers for the wedding, but she sent us away with about 10 vases and seeds already! APL had his BBQ tasting (sooooo yummy!!!) and we decided on a menu for dinner (which will be cooked on-site). And we spent all day Sunday tasting the local wine and talking to a small winery that will provide a wine tasting bar for our guests at the wedding.

It was an amazing week and we made so much progress on the wedding. I can't believe that APL and I are getting married in less than 9 months!

Friday, September 3, 2010

What I Learned From 11-Year-Old Caitlin

Remember that time I was 27 years old, went to the dentist, and had five cavities? And I determined it was because I sucked at being an adult and just hadn't been taking good enough care of my teeth? Yeah, about that.....

My cousin just sent me an article and (you guessed it!!) apparently several of the drugs that I am on for my RA (or have been on over the past couple of years) can lead to tooth decay. I haven't researched the issue myself, but the article is posted on The Arthritis Foundation website. Here is an excerpt:
One of the side effects of methotrexate, even at low doses, is dry mouth. Saliva in the mouth has an anti-bacterial effect. Loss of the cleansing properties of saliva can lead to the buildup of bacteria, and thus, to tooth decay

Prednisone also has the potential side effect of xerostomia (dry mouth). Prednisone is also a glucocorticoid, which can increase not only blood surgar levels, but the levels of sugar in existing saliva - which some dentists will attribute to an increased risk of tooth decay. In addition, prednisone can cause a leeching of certain minerals from bone - most notably, calcium - leading to a potential thinning of bone, including in the mouth. Thus, on many fronts, the side effects of prednisone can cause havoc to your oral health.

Here are some other drugs that can contribute to dry mouth: Naproxen, Motrin, Piroxicam, Diflusinal and most antihistimines.   
May I be the first to say: What. The. HELL?? My RA drugs are affecting my teeth??? It makes me want to get pretty mad about it. When will the surprises stop?? Is there any way that this disease is not going to affect my life?? What are you supposed to do when the cure is worse than the disease?? Why do I have to deal with all of this every single day of my life???
Bu then I discovered that the article is from a blog written by the mother of Caitlin,  a young girl who has been suffering from severe JRA since she was three. I just watched a heart-wrenching video about Caitlin getting her hip replacement at age 11. (But I was glad to find the video through a post her mom wrote which says, a year after the hip replacement, Caitlin is doing well and does not need her second hip replaced yet.) 

I have enough trouble adjusting to RA as an adult - I can't even image what it would be like to deal with it as a child. But Caitlin is a strong and inspirational little girl - she talks with poise and composure and acceptance about her condition in the video. She reminds me that I'm supposed to be moving forward, not looking back and grumbling.  I really hope to be able to learn more from Caitlin in the future, so I've added her mom's blog to my favorites (you can access it under "Resources"). In the meantime, I want to thank Caitlin for giving me perspective.  I hope she knows how amazing and strong she is.