Thursday, April 30, 2009


Recently it occurred to me that I spend a lot of time ignoring things that are going on in my body.

I’ve been ignoring my headaches for years. I can function pretty normally with a headache that would floor most other people just by ignoring it. When doctors couldn’t figure out how to make my headaches go away, I had no choice but to be miserable or ignore them and get on with my life.

I’ve been ignoring the cold sore in the middle of my bottom lip that absolutely refuses to heal because my immune system is so screwed up. I wake up with a lip (and sometimes pillowcase) caked in blood and I just ignore it because I can’t make it heal any faster by worrying or getting upset about it.

I’ve been ignoring the little bit of extra weight I’ve gained by taking prednisone every day. Prednisone is necessary right now to control my RA and I can’t help it if I don’t feel well enough to exercise sometimes. If I get upset about the extra weight, it doesn’t do me any good.

I am ignoring the pain in a couple of my finger joints right now as I type this post, because otherwise typing it would be frustrating.

Lately I’ve especially been ignoring the pain in my feet. My toes have been particularly painful for about a week – really curling inwards on themselves, which causes my feet to cramp and my ankles to get sore. My feet hurt if I walk; my feet hurt if I rest. My feet hurt when I take Aleve all day; my feet hurt when I take nothing at all. My feet hurt when I soak them, heat them, ice them…there doesn’t seem to be anything I can do to make them hurt less. So what choice do I have but to ignore them? Because the alternative is to get angry and upset, and that doesn’t do me any good at all.

However, I’m beginning to think that all this ignoring isn’t really that good for me either.

Monday, April 27, 2009


I don't know why, but for the past couple of days I've been feeling like I had a battle with a steam roller and lost. So I can't tell you how much it cheered me up to see that my very wonderful friend KA has given this blog an award! This award is given to a blogger who shows great attitude and gratitude. So, given that at least some of the posts on this blog are more about my frustrations and occasionally wanting to give up, it was great to know that KA thinks, overall, this blog has a great attidue. So thank you very much KA!

After receiving this award, I'm supposed to post the award logo (the lemonade stand) on my blog and then pass the award along to 5 other bloggers who show great attitude and gratitude. Then I'm supposed to comment on each of their blogs to let them know that they have recieved this award from me!

But before I hand out my awards, I want to give a shout out to my friend KA. Her blog lawn fawn cards talks about the process of making her beautiful handmade cards. She posts pictures of the cards and really fun instructional videos that show her making them. And each and every one of her cards is unique and gorgeous - certain to really make someone's day! Which reminds me - mother's day is coming up on May 10th and she's got some gorgeous mother's day cards in her online shop. And, if you live in the LA area, she will have even more mother's day cards at a trunk show in Glendale on May 2nd. Trust me - your mom will love them!

Ok. On to my awards!

My first award goes to my college roommate AJ (soon to become AK!!!) who originally encouraged me to use blogging as an outlet for everything I'm dealing with. She is a fantastic writer and her blog, A Taste In The Life, has become a hilarious account of the trials and tribulations of planning a traditional southern wedding while keeping her own modern flair. (The wedding is on May 9th!!) It's basically guaranteed to be an entertaining read and it is always uplifting.

My second award goes to my cousin KF. Her blog, Kaia and Me, is mostly about raising her daughter Kaia, adopted last Thanksgiving. My cousin has had some tough times of her own, but her ability to see the bright side of everything and always move forward has been a constant source of inspiration to me. My cousin has actually just started a second blog, The Itsy Bitsy Spider, which talks about her process of creating adorable handmade crochet amigurumi, which she sells on etsy. Actually, your mom might like those too!

My third award goes to my friend LD. A few months ago, her dad was in a snowboarding accident that left him with a spinal cord injury. Her blog, Larry Dubey, is about her family's journey to adjust to her dad's injury. Despite having to deal with extremely difficult situations, and even though there have been some painful setbacks, LD's ability to honestly tell her dad's story while keeping an open mind about the future never ceases to amaze me. Whenever I read her blog posts I remember how grateful I should be for all the things I do have that I take for granted every day. If you are interested in showing support to their family, you can purchase T-shirts and wristbands here.

My fourth award goes to my friend PN for her blog (the title of which never ceases to entertain me) i like stuff (but not all stuff). PN has graduated from law school and is getting married in September. But she uses her blog primarily to rant about political topics, which always makes for an interesting read! Incidently, if you are still looking for a mother's day present (this post has become a "how to shop for your mom" guide! You won't need to worry about mother's day after reading this!) PN sells vintage and modern jewlery in her online shop!

My final award goes to someone who I have never actually met in person! In the process of working on my own gluten-free blog I discovered her gluten-free blog: Gluten Free Easily. Her blog focuses on how eating gluten-free can actually be easy by focusing on "real" foods. She tells stories and posts recipies that are delicious and photos that are gorgeous! (My GF blog will actually be reviewing two of her recipies soon!) It's a great resource for gluten-free eating - but also just for yummy recipies to try!

So thank you to all my blogger friends who inspire me and contribute so much to my blogging process! I hope you like your award!

Monday, April 20, 2009

One Disaster At A Time

Today I had to book an urgent care appointment to deal with a rash that has broken out literally all over my body, and as I was driving there the car almost died.


One disaster at a time:

Disaster Number One: My Immune System

On Saturday I was actually feeling pretty good, and I can’t even remember the last time I used the word “good” to describe how I feel! The soreness in my shoulder had faded, I didn’t have a headache, and I actually felt like I had a little bit of extra energy. APL and I decided to go to the gym and I actually did a really good workout. I did half an hour of cardio (elliptical and treadmill) and then I swam for half an hour too!

After the workout, I felt tired and a little sore but really good about myself. But after my shower, as I was getting dressed, I noticed a splattering of little red spots across my stomach. I looked in the mirror and realized there were red spots across my back too. And I’m sure anyone who reads this blog regularly remembers the boob wound incident, so you’ll understand when I say I was devastated to discover that the little red spots had spread out across my chest too.

By Saturday evening the red spots had spread onto my arms and legs as well. And to me the spots looked suspiciously like the rash that had lead to the Boob Wound Saga of 2009 in the first place – only this time there were probably a hundred of them all over my body. What if more than one of them turned into abscesses this time? How many little wounds would I have on my body?

And because I had such a good day, the rash made me feel absolutely miserable. It was the first day in probably a year that I had felt good and worked out hard. I had been in a good mood, my body had been feeling ok, and I had been feeling hopeful. So it was crushing for my immune system to throw the rash at me the same day. I broke down and had a crying fit that evening because I was so frustrated, and poor APL just had to hold me until I stopped. There was nothing he could say to make me feel less frustrated.

Luckily, after I got the crying out of my system, I didn’t let the rash ruin my entire good feeling. Since the rash wasn’t getting any worse on Sunday there was nothing to do but wait to get the first appointment on Monday morning. APL helped me keep my good feeling up by going back to the gym on Sunday. I spent another half an hour on the treadmill and I ran/walked two miles – spots and all. So I am at least proud of myself for that. Also, my good friend RK brought me some gorgeous irises, which helped me cheer up too.

This morning, I woke up early to claim one of the urgent care appointments today to have the doctor take a look at the spots. But on the way there, the Explorer became possessed. It was beeping, locking and unlocking the doors all by itself, and it stalled once. I thought I wasn’t going to make it to the doctor’s office, but at least I did. The doctor is doing a culture on my rash and we should know in a day how bad it is. Luckily, she doesn't seem to think it is the same type of rash that led to the boob infection. So that's good, at least.

Disaster Number Two: The Explorer

I am really grateful to have that the Explorer that my dad gave me – it’s the car that APL and I used for our 48-state adventure! And it is really nice for APL and me to be able to have two cars. But, man, has that car had some bad luck! Last year alone it had a new back windshield, new front windshield, new A/C compressor, new fan belts, and a new transmission!

So, when the car started acting possessed this morning – locking and unlocking the doors all by itself, beeping with no error messages on the dash, stalling when I stopped to get the ticket at the parking garage – I immediately assumed the worst and drove straight to our car repair guy after my doctor’s appointment. I left the car there and kept my fingers crossed that whatever was wrong with it wouldn’t be too expensive.

Luckily, it turned out to be some problem with the back hatch not being shut properly and the wiring connection getting all confused. Or something. (Clearly I know a lot about cars!) In the end the car guy also fixed our back windshield-wiper (which broke off in the last snow) and cleaned some air filter thingy and the car seems to be working fine now.

So, in the end, I guess the day wasn’t too disastrous after all. But I'm exhausted, just the same.

Friday, April 17, 2009

“But You’re So Young!”

When I first got diagnosed with RA, I had a really hard time telling people about my illness and talking about the consequences. I spent a lot of time avoiding people and I got really lonely.

Luckily, over the past few months my acceptance of my situation has grown to the point where I can almost always talk about my RA. Usually I can even joke about it! And I feel like it actually helps me to talk to people candidly about my RA sometimes.

I still have a little bit of trouble spitting out the sentence “I have RA” to someone for the very first time, but so long as I take a deep breath I am usually happy that I did it in the end. I’ve also gotten really good about getting past the inevitable pity that comes with telling someone for the first time. I know people feel bad and it’s hard to know what to say. And I’ve gotten to the point where I can handle pretty much any response.

Except for one: But you’re so young!

That one still gets to me for some reason. I know that I am young. I know that I haven’t really had a chance to live my life the way I might have wanted. I know that I have to deal with this disease for the rest of my life, which (hopefully) will be a really long time. You really don’t need to point it out to me. And, to make matters worse, this sentence is usually uttered by really well meaning people that I have good relationships with: the nurse practitioner at student heath, my massage therapist, my neighbor….

Oh… they say after I manage to tell them I have RA, but you’re so young! What’s the appropriate response to that?
“Yes, it sucks that I will have to deal with RA for the majority of my years.”
“Gee…I hope I find a good way to deal with this pain or, you’re right, the rest of my life will suck.”
“Yeah, I no idea how I will ever manage the pain and fatigue and a family and career at the same time.”
"Hmm...I wonder if I'll ever be able to climb the Half Dome with APL like I always wanted to?"
Lately I’ve been leaning towards: “Hey! At least I’m younger than you!”

Well, today I learned a new response that I think I’ll use from now on. I was having a conversation with my mentor, who I call “the Guru.” He said he thought it was actually a good thing to be diagnosed so young. This way I wasn’t already set in ways that would be more difficult to alter. I hadn’t started a family or a career, so there wouldn’t be too many huge life changes to make. And I’m lucky enough to be able to take some time to adjust and learn how to live with the RA while I’m still more adaptable. And, from this point forward, I can start my career and my family with the RA already under control, instead of letting it rip up my life later.

It was the best point I had heard in a long time. Thank you, Guru.

Thursday, April 16, 2009

Pain in the Shoulder

The day before yesterday I woke up with an all-too-familiar pain in my right shoulder and right side of my neck, which made my usual morning RA soreness quite a bit worse. I had a lot of trouble getting out of bed that day.

I’ve actually been having pain in my right shoulder, under the shoulder blade, since college. The way I have to sleep to alleviate the shoulder pain usually leads to soreness in my neck too. The shoulder pain generally sticks around for a couple of days, or sometimes even weeks, and then goes away for a while.

The pain started in college, a month or two after I took a particularly bad fall while snowboarding in Mammoth. It was the end of a long day of snowboarding and we were coming down a relatively steep, shady, icy slope. I started to make a turn and then second-guessed myself and tried to take it back. Instead I ended up with my feet flying out from under me. I hit my right shoulder, then my head, and slid the rest of the way down the slope. The hit to my head was hard enough to crack my helmet (thankfully I was wearing one) so the original impact to my shoulder must have been even harder.

I was sore from the fall for a couple of days, but then I didn’t have much trouble with my shoulder until around finals, when I woke up one morning with a ghastly pain in my right shoulder and up through my neck. I saw the doctor at school and she sent me to a physical therapist. But I only saw the therapist once because he yelled at me (and made me cry.) I remember him yelling: “ARE YOU SURE THE PAIN IS FROM YOUR FALL? DID IT START RIGHT AFTER THE FALL OR IS IT UNRELATED? IF YOU DON’T KNOW, I CAN’T HELP YOU!”

Now, this type of behavior is probably not the best attitude for a physical trainer to have, especially towards someone who is hurting. It certainly scared me away. But just yesterday it occurred to me that maybe that rude guy was actually right. Maybe the reoccurring pain in my right shoulder is not from that snowboarding fall, the way I always assumed it was. I mean, it’s been about five years since I took that fall. What on earth kind of injury could still be causing me pain today? Maybe the pain in my shoulder was really the onset of my RA. After all, the RA picture I used in my very last post circles shoulders as one of the main problem areas.

I never told my rheumatologist about the shoulder pain because it didn’t occur to me that it was related. So I guess I’ll have to ask him about it next time I see him. ::Sigh:: Some days, my immune system gets an “F.” Lately, it's been most days.

In other news, because of the shoulder pain and the gray rainy day, I was unable to convince myself to go for a swim today. I thought I just didn’t have the energy. But I did manage to guilt myself onto the stationary bike for about 15 minutes (while watching The Biggest Loser, obviously). I rode for 15 minutes and then I took a break. Then I rode for 15 more. Then 15 more, for a total of 45 minutes and 10 miles. So that felt pretty good.

Then, those of you who know me will never believe this: I decided to go for a jog. In the freezing rain, no less. Let’s get something straight: I don’t run. I hate running. I never run. In fact, that’s originally why I started swimming and playing water polo – just so I wouldn’t have to run. I’ve always felt like running was too tough on my knees and ankles (early RA warning, perhaps?) I also didn’t like the jarring, the banging of my feet on the pavement, as it always seemed to make my ever-present headaches worse.

But today I think I must be totally losing my mind because I decided it was a good idea to go for a jog. I wanted to, for some reason. It wasn’t a long jog – just around my town home complex until River and I were both soaked and freezing- but I actually did it. And you know what? I felt pretty good afterwards. Especially when I shed my wet sweats and sat in the hot tub in the rain.

I think I’m going nuts.

P.S. Even though I dried her when we got home, I just walked into the bedroom to discover that River had jumped up on the bed and had actually snuggled herself down under the blankets. I guess she really was freezing from that run!

Tuesday, April 14, 2009

Dear Immune System

Dear Immune System,

Don’t you think eleven months is about enough time to figure out how to get over yourself?

I’m pretty sick of feeling icky and I’m running out of patience with you.

Please improve immediately. Thank you.


Sunday, April 12, 2009

Spring Break

Since I’m not in school this semester, I thought spring break wouldn’t matter that much to me. But that turned out to be untrue! I was lucky enough that my mom and sister had their spring breaks the same week (mom teaches kindergarten in LA, sister is a special ed classroom assistant in Chicago), so they both came out to Colorado and I got to spend time with both of them together!

My mom came out first and she brought me a really pretty dress that she found in Macy’s that she thought I could wear to one of the many weddings I’ll be attending this year. I love the dress and it was really sweet of her because I haven’t had much luck with shopping lately. I’ve never really had the patience for shopping, and now the fatigue makes it nearly impossible. So my mama saved me a lot of trouble! (Thank you again, mama! I'm looking forward to wearing it!)

APL and I also got to take my mom to dinner at Restaurant 4580, which has a really great gluten-free menu and I always really enjoy. (Check out the review on Friday in our gluten-free blog!) It was the first time I had a hamburger with a bun since I went gluten-free!

Then my mom and I drove down to southern Colorado to visit my godmother (my mom’s best friend). She and her husband are building a house near Westcliff, which I estimate has a population of about 8 people and 12 prairie dogs! So we’re talking pretty middle-of-nowhere. But the valley and the view of the mountains is so very beautiful that I can see why you would want to live there. We had a really nice time visiting with my godmother and antique shopping in a few of the relatively nearby small towns. It was really nice.

After we came back to Boulder we got to spend some time with my sister. We didn’t do anything particularly exciting – we made dinner, went out to breakfast, drove through the mountains, poked around in some shops – but it was really great just to spend some time with my family. Although I have to admit that it still wears me out a little bit to have company, I’m really glad I got a chance to see them both! (Thank you guys for visiting me!)

Wednesday, April 1, 2009

Ten Things That Make Me Happy Today

1. My afternoon snack. Ants (and ladybugs?) on a log, blackberries, and trail mix. Healthy, gluten-free, and tasty!

2. Even though I still have a headache today and it has been cold and gray all day, I somehow managed to talk myself into going for a swim. I didn’t manage to swim very long and it made me really tired, but at least I went!

3. I got home from swimming before it started to snow again! (On a side note, it looks like this might be quite a storm! There was just thunder and lightning with the snow. What on earth is that about?!? And where’s Lewis Black when you need him?)

4. River. She makes me happy every day.

5. APL. He makes me happy every day too. Lately he’s started to come home from work sometimes to have lunch with me, which is really nice. It makes me feel less lonely during the day.

6. My gluten-free blog. I think we’re actually starting to gain a following beyond friends and family!! I installed a hit counter on the site a day or two ago and it is already past 500 hits! Also, we just got accepted as a Foodbuzz featured publisher which is very cool and will hopefully increase our traffic even more. I’m really glad to see the site doing well because (a) I’d love to be able to help people who are gluten-free and (b) working on the gluten-free blog is a really good project to keep me busy, which helps me feel happier while I'm figuring out how to deal with all the RA stuff.

7. Helping out my friends. I’ve gotten so much pleasure from my gluten-free blog starting to get popular that I wanted to help out my friends who have projects of their own! My cousin, KF makes and sells adorable crochet amigurumi. My friend, KA, makes and sells beautiful handmade cards. And my friend PN sells really pretty jewelry. I’ve put a link to each of their shops in the right-hand column and I hope you will visit them if you are looking for something special!

8. Today I got an email from a college roommate, AL, reminding me about an April Fool’s prank that AJ and I played on her during our sophomore year. It was good to hear from her and the memory really made me smile. It was a really good prank! ~;o)

9. My mom and sister and our friend LD are all coming to visit next week! I am excited to spend time with them and have a house full of people for the week!

10. Little House on the Prairie. Yeah, you heard me right. I was obsessed with the books as a child. I think I read the box set that my mother bought me in second grade at least 20 times – the books are literally falling apart. And when we were in South Dakota I made APL take a 150-mile detour so that we could visit the Ingalls Homestead. But, despite this obsession, I had never seen the TV series. So, APL rented it for me and I have really been enjoying watching it. It’s wholesome and cheesy but it brings back happy memories from my childhood. So, since the snow is falling even harder now, I think I’ll make a cup of tea, turn on the fire, and see what Laura and Mary are up to today…