Monday, January 30, 2012


Do you watch Glee? APL and I certainly do. Yes, we know the show is about singing and dancing high school students. Yes, we know that we are approximately 30 years old. But we still find Glee uplifting and entertaining. Such a fun show!

Which was why I was so extremely excited to see this post on Colleen's blog the other day. Colleen's daughter Caitlin was diagnosed with JA when she was three and since that time she has had both of her hips replaced. I've mentioned Caitlin on this blog before because I think she is such an amazing person and I feel like I have a lot to learn from her perseverance. And now I have a reason to be slightly jealous of Caitlin, because she and two of her JA friends got to visit the set and meet the cast of Glee!!

This was a totally awesome wish granted for the girls, and I am super happy for them! But what I loved most about this story is how the visit helped educate the cast of Glee that you don't have to be old to get arthritis. Check out these photos of the girls with the cast (re-posted with Colleen's permission, of course. You can see more pictures from the visit on her blog.) In these pictures, the actors who play Kurt, Quinn, Finn, and Mercedes are posing with the girls - and what does it say on that big blue hand? "Raise your hands against ARTHRITIS!"  

Millions of kids and young adults look up to these actors, and now these actors have met the truth first-hand: kids get arthritis too. Young people get arthritis too. You don't have to be old to get arthritis. And maybe, just maybe, some of them will remember and help spread awareness. And that is truly awesome!

Wednesday, January 25, 2012

The R-Word

I know I've promised a couple of times recently to write a post about the R-word, and I have to admit that I have honestly been thinking about it a lot lately. So here it goes:

For those of you who have no idea what I am talking about, the "R-word" is "Remission." (There. I said it.) Considering the trials and tribulations of the past three and a half years, sometimes that word seemed too magical to say (type) out loud. You mean all the pain, fatigue, and suffering could just....go away? I could actually feel normal again? I could go back to doing everything I want to do?

Since getting pregnant, I've been thinking a lot about that magical R-word, because if you've ever read anything about RA and pregnancy, you'll have read some statistic about the possibility of going into remission (or at least seeing a big improvement in RA symptoms) while pregnant:
  • Around 50 to 75 percent of women with RA who get pregnant go into remission - everyday Health
  • Approximately 70 percent of women with RA experience an improvement in symptoms beginning in the second trimester and lasting through about the first six weeks after delivery - Arthritis Today
  • Many women, up to 75%, find that the pain and swelling associated with RA is much improved during pregnancy usually in the second trimester - National Rheumatoid Arthritis Society
So now that I'm well into my second trimester, I feel like I have been asking myself daily if this is really it - am I actually in remission? APL thinks I might be.  And, the more I think about it, I think he is probably right.

I mean, if you look at the posts on this blog you can see that I have had trouble with a lot of my joints over the past three and a half years: toes, ankles, knees, hips, shoulder, elbows, wrists, fingers, jaw....and you know what? None of those joints hurt right now. And I honestly haven't had much trouble with any of them since I got pregnant. (The the only pain I have been dealing with lately is the pain in my SI joint - my low back on the right side - which my rheumatologist says is more related to the pregnancy than my RA.) So if my RA made all of those joints hurt on a regular basis, and none of them are hurting now, maybe I actually am in remission?

So why don't I sound/feel more excited about it?

Here's why: I think I had unrealistic expectations about what pregnancy remission actually meant. I mean, APL and I literally used to joke about getting me pregnant just to avoid having to deal with the RA. I honestly thought that if I was lucky enough to be in the 50-75% that went into remission, it would be like a magical pathway back to my life before the RA diagnosis - where I would feel great and be able to do all the things I used to do, at least for a few short months.

I'm sure some of you have had the same dreams/expectations about pregnancy remission. If you have, I truly hate to burst your bubble about it. In fact, that's one of the reasons it has taken me so long to write this post - I really hate to take away anyone's hope for relief because sometimes that's all you have to keep you going when the flares get bad. But this blog has always been about honestly telling my RA story, and the reality of remission has been a big part of my RA story lately. And though it's true that this post might take away some of your hope, maybe it will also save you from disappointment.

Because I have to admit, if this is remission then I honestly feel a little disappointed by it. I mean, don't get me wrong, it's really great that the long list of joints that have given me trouble over the past few years are all behaving. I am truly grateful for that relief - and I'm really not trying to look a gift horse in the mouth or anything.

But still...

I think I gave the magical R-word way too much credit. And I think I also underestimated how difficult pregnancy itself can be. Because deep down I thought, once I got past the nausea of the first trimester, the magic Remission was going to kick in and I was going to feel truly great. But I really don't. Most of the time, I actually feel pretty crummy. I'm still dealing with huge amounts of fatigue (which is now probably from being pregnant rather than RA - but who really cares? I'm exhausted!), I've got hormone headaches and pain in my SI joint that I can't take any meds for, I'm being tested for pregnancy complications, and my body is still doing all sorts of crazy stuff - from pre-cancerous spots on my face to disappearing armpit lumps (for which I am, of course, grateful - but it was still an exhausting experience.)

My point is this: I am still struggling. Remission, if this is really it, has not been a magic pass to feeling fantastic. But, though it has been hard, I am actually still pretty happy. I know all this struggle is for a really good cause this time. And I realize now that pregnancy remission can't be a magical pass back to my life before RA, because there is no such thing. That life - my life before RA - is gone, and there's no sense clinging to it. Like the title of this blog, I have to look forward, not backwards. And honestly? Forward is looking pretty good right now.

Friday, January 20, 2012

Pre-Cancerous Spot

Remember that spot on my face that I mentioned? You can actually see it in this picture, right by my ear (plus, just for fun, my baby bump!) It doesn't look like much. But I just got the biopsy results back: it was pre-cancerous. 

It's not melanoma and it's not cancer - yet. It was apparently a spot that could become cancerous if not treated. They think they scraped it all off with the sample, but I'll go back in a month to be sure. I'm supposed to keep an eye on it, make sure it's healing, and call back right away if I notice any changes. It's really good news that it is not something scary, but even better that I went to get it checked out. So many thanks to my little sister, who was the one who told me I should get it looked at in the first place!!

In the meantime, I'm sort of afraid to announce it out loud, but I've actually been feeling pretty good lately. I'm stilling thinking about that R-word....

Thursday, January 19, 2012

Good News, Everyone!!

Medically, this has been a really weird week for me. On Monday I collected a 24 hour urine sample as part of a baseline test for preeclampsia. On Tuesday I dropped off my jugs-o-pee at the lab and also had some bloodwork drawn. Then I went to see a dermatologist about a spot on my face that has been getting darker since I got pregnant, and she decided to do a biopsy so now there's a little wound on my face. Yesterday I had a prenatal massage in an attempt to help out with my SI joint pain (which I think has actually improved somewhat...knock on wood!!) Today I was scheduled to have surgery to remove the armpit lump I discovered back in October. 

Last week I had a followup consult with the surgeon, where we discovered that the lump had actually shrunk somewhat! Based on the shrinkage and physical manipulation by the surgeon, he determined that the lump was most likely to be a sebaceous cyst, rather than a neural tumor. Although they were pretty sure it was benign to begin with, having it turn out to be a cyst was really good news because it meant there was no cancer risk. But, due to the possibility of the cyst becoming infected (and we all know my track record with infection...the boob wound, in particular, comes to mind) we decided it was safer to still take the cyst out.

So by 8:15 this morning I was sitting in a hospital gown with an IV in place, waiting for the surgeon. But then when the surgeon went to mark the cyst in my armpit he couldn't find it. It appears to have shrunk/disappeared completely since my consult last week! So no surgery necessary!! It's still possible that the cyst could come back or get infected, so I have to keep an eye on the area, but I didn't have to have surgery and this is pretty clear proof that the lump was never something scary, as scary things don't get smaller. It feels good to have some good news after a pretty exhausting week.

Despite all the recent medical excitement, I can't help but be aware that none of these tests/issues are directly related to my RA. Or even indirectly related, for that matter. Even the SI joint pain seems more likely to be related to my pregnancy than my RA. And, though I am unquestionably exhausted, none of my other joints are misbehaving. My body does appear to be functioning pretty well and, as the magical shrinking armpit lump shows, even healing itself.

My point is this: I've been thinking a lot about the R-word lately and wondering if it can be true. APL seems to think it is, but I'm not sure what I think yet. I think I need to think about it a little bit more. But, as soon as I manage to come up with some clear thoughts about the matter, I do promise a post about it.

Tuesday, January 17, 2012

19 Times!!

TMI Warning: This post contains details about pregnancy that you may consider to be too much information. Don't say I didn't warn you!

I'm sure you've heard that pregnant women have to pee all the time, haven't you? Well, since I had to collect all my pee for 24 hours anyways, I decided I would count exactly how many times I peed in a 24 hour period.

The results? 19 times in a 24 hour period. And 4 were in the middle of the night. And I think that's actually less than an ordinary day, because it was a little bit of a pain to pee in the hat and pour it in the jug, so I tried to hold it until I really had to go.

Also, the volume of pee over that 24 hour period is just mind boggling. I mean, the jugs (notice, plural) are heavy. So now it's time for me to take what will more or less be a walk of shame and drop the jugs-o-pee off at the hospital lab. And, as a reward when I get there, they'll draw some blood.

Here's to hoping the results are good!!

Monday, January 16, 2012

Liebster Blog Award

Well, it has been quite some time since I have been given one of those meme blog awards - but it seems I have just been awarded the Liebster Blog Award by my cousin. My first thought was: what the heck is a "liebster"? 

Well, Merriam Webster and don't know (and, in fact, both asked me if I was actually searching for "lobster). But the meme award defines it this way:

Liebster: “sweetheart, beloved person, darling adj. dear, darling; beloved, liked very much; affectionate, loving adj. favorite, preferred above others; liked or loved above others.”


So here are the rules of this award:
  1. Thank the person who gave you the award.
  2. Link back to the Blogger (or Bloggers) who awarded you.
  3. Answer the following questions, down below.  
  4. Pass the award out and recognize other Bloggers letting them know that you love them.
So, first of all, thanks to my lovely cousin Karla over at Beyond the Dryer Vent, who constantly inspires me with her ability to keep being super mom even in the most frustrating of situations.

Ok. On to the questions:

Favorite color: Mine has really always been blue.

Favorite animal: The crazy/bratty one that lives in my house....River!!

Favorite number: 12. The date of my birthday and my water polo cap number in high school.

Favorite drink: Dr. Pepper. I've been trying to give up caffeine for my pregnancy and it hasn't been easy!

Facebook or Twitter? Facebook. I went to Princeton, so I've been on Facebook pretty much since it was invented (Facebook started at Harvard, then opened to the other Ivy League Schools, then opened to include other universities, then anyone with a .edu email address, and finally the public). Also, I don't really get the point of Twitter.

Passion? These days I guess I'd have to say spreading awareness about living with arthritis - and working with JA kids, who I love!

Getting or giving presents? I like giving, especially when I pick a particularly good one. 

Favorite day: I've always been partial to Thanksgiving. I love the food and when I was growing up my family always used to have a "Day After Thanksgiving Picnic and Bike Ride" where we would spend the day biking and playing outside (yay growing up in California!) and eating leftovers, and we got to see our friends. I hope to bring this tradition back to life with my own family someday. (Also, I guess I'm a cheater because I seemed to have picked two days...)

Favorite flower: Love in the Mist - which I had in my hair and my bouquets and our wedding. I love their interesting shape and how they come in lots of beautiful colors, including blue. 

So those are the question, now for the tagging! Apparently the original rules to this award say you have to tag 10 bloggers who have 20 or fewer followers (how specific!) but I'm going to do like my cousin did and tag just three amazing bloggers: 

I'm going to start with the amazing Meghan at Taking the World By Storm: and doing it with ankylosing spondylitis. Meghan works full time, does graduate school on the internets, and was just diagnosed with AS - but sure isn't going to let that stop her!!! She's even doing a half marathon in February!!

Next I want to give some blog love to Christina over at Curly Bones. I've talked about Christina on this blog before and how awesome I think she is to be bravely sharing her story of trying to start a family while dealing with her JRA. She's super busy having just moved into a new house, but I still want to let her know that I think she's such a sweetheart!

Lastly I would like to give some love to Helen at Pens and Needles, who is bravely attacking law school despite her RA and other health issues (even though I warned her beforehand how hard law school can be!!) Her perseverance continues to inspire me.

Please Pee In This Hat.

TMI Warning: This post contains details about pregnancy that you may consider to be too much information. Don't say I didn't warn you!

We had our third prenatal appointment last week. For the most part, everything is going well. We got to hear the baby's heartbeat (!) and all the test results for the baby have been really good so far. The OB was also able to give me some specific recommendations of who to see to help me with my SI joint issue - including physical therapists and chiropractors who are skilled in dealing with pregnant women. So that made me feel pretty hopeful. 

Unfortunately, it seems my blood pressure at this appointment and the previous one were a tiny bit too high for the OB's liking. And, since I have actually had trouble with my blood pressure in the past (though mostly when I was on prednisone) the OB is a little bit concerned about the possibility of preeclampsia. She doesn't think I have preeclampsia (yet), but to be on the safe side they are having me do what they call a baseline test for preeclampsia.

So that's what I'm doing today. The test delightfully involves collecting all my pee for 24 hours in a giant jug. They give you this hat to pee in, and the hat has a spout to help you pour into the jug. Then you're supposed to keep the jug in the fridge until you have a 24 hour sample (so don't come over to my house looking for something to drink today). I still haven't decided what I'm going to do about sleeping tonight - since the fridge is downstairs and my bed is upstairs an I ordinarily have to pee 3 or 5 or 9 times in the middle of the night. Then tomorrow morning I take the jug-o-pee to the lab and get some bloodwork done too.

As far as I understand, they are looking for protein in my urine, which is a bad sign. In the meantime, I'm trying not to let myself read too much about preeclampsia, because the OB says this is just a precaution and I really don't want to freak myself out unnecessarily (especially since I've already had a couple of really intense anxiety dreams recently - and I haven't had those since 2008). So for the time being I'm just trying to get through this test (which pretty much means I can't leave the house today since I have to pee so often) and be grateful that my doctors are being cautious.

Friday, January 6, 2012

Parenting with Chronic Pain

Some of you may have seen my first guest post on - which was very cool to be a part of!! 

This week CreakyJoints has featured another new guest blogger: Lana, mother of two, diagnosed with RA and fibromyalgia at age 32. I found her post to be particularly interesting because it discusses the complicated process of parenting with chronic pain - something I will have to figure out for myself very soon!

I particularly like her take on honesty, and I thought some of you might also be interested in what she has to say. You can check out her post here.

Thursday, January 5, 2012

Miss Michigan Has JRA

I have pretty mixed feelings about beauty pageants. Actually, I totally take that back. For little girls - like in Toddlers and Tiaras - I tend to think it's pretty much horrifying. That's why I'm all for Olive, the only real little girl in Little Miss Sunshine.

I'm pretty sure enforcing a stereotypical view of "beauty" isn't doing girls/women anywhere any favors. But, that being said, as girls get older at least there is a talent portion and opportunities for public speaking and scholarships, etc. The girls who make it to the top also have an opportunity to use their position as a platform to make a difference on issues that matter.

Which is why I was pleasantly surprised to read about Elizabeth Wertenberger, who was recently crowned Miss Michigan. She was diagnosed with JA at age 13, and told by her doctors that she would eventually lose her ability to walk. Now she is using her Miss America Pageant platform to raise awareness for arthritis and other chronic illnesses that affect children. She also wants to bring hope to suffering kids. And, my doubts about beauty pageants aside, I think that's pretty cool.

You can watch a video of Miss Michigan and vote for her to win Miss America here.

UPDATE: As one of you mentioned in the comments, Elizabeth was also featured in Arthritis Today. You can see that article here