From This Point. Forward.

Physical Therapy

2012-02-03T09:47:00.000-07:00

It's snowing just a little bit in Boulder today. The picture is of the snow that has accumulated on the fence in my back patio since last night - I would say it is almost a foot. And it doesn't look like it is planning to slow down any time soon.

So, after looking out the window, I guess I wasn't too surprised to find a voicemail on my phone letting me know that my physical therapy appointment for today had been cancelled. What did actually surprise me was how that message made me feel: slightly disappointed, actually. Which is a really good thing - because it means I actually like this physical therapist and I actually think it's helping.

After my last less than stellar physical therapy experience, I have to admit I was pretty reluctant to waste my time and effort (and money) trying it again. But the pain in my back wasn't getting a lot better, and my belly certainly isn't getting any smaller, and I can't exactly just take a handful of Advil and hope the pain goes away. So last time I saw my OB I bit the bullet and asked her for a recommendation for PT.

And I am ever so glad I did. She recommended a rehabilitation center associated with a branch of the same hospital where I will give birth - and they actually have PTs who specialize in prenatal therapy. (And postnatal therapy, which may also turn out to be super useful). SCORE. So I've been seeing this new PT for two weeks now. This morning, when I was actually disappointed that my appointment was canceled, I realized that this PT is actually helping.

This PT has been focusing more on loosening and strengthening the muscles in my back (as opposed to focusing on the actual SI joint itself). Now that I think about it, the physical manipulation she has been doing and the exercises I have been doing really do seem to be helping the pain in my back - especially since I am now showing a whole lot more than when I was seeing the previous PT. Plus she is super nice and willing to answer all of my questions and she is full of good suggestions. For example, on Wednesday she pointed out that the pregnancy is causing me to stand with my pelvis tipped forward, which is putting extra strain on my back. And, when I thought about how I have been "naturally" standing recently I realized she was right (which is probably how I was standing during the three hour visit to Babies 'R Us last weekend, which explains the extra pain I was in this weekend). So of course she showed me how to correct that.

In any event, though I am disappointed not to have her help today (and a little nervous that I will have to until next Wednesday to see her again) I am really glad I had the realization that it this PT is actually helping. That makes me feel good. Because it did take a lot of effort on my part to start over and try again with a new PT. But, as it turns out, with a trustworthy recommendation and someone who actually specializes in my issues, it was totally worth the effort.

Arthritis Patients Who Rely on Medicare

2012-02-02T16:30:00.005-07:00

As part of my Arthritis Ambassador assignment this month, I just emailed my Congressional Representative about physician reimbursement payments and therapy cap exceptions for arthritis patients who rely on Medicare.

I know, I know, I am only 29 years old - nowhere near the Medicare age of 65. And most of the arthritis patients on Medicare are probably dealing with OA anyhow, rather than RA. So why on earth do I care what happens with Medicare? Here's why:

For one thing, arthritis is unacceptable. Period. Any type of arthritis pain seriously affects your quality of life. And I think anyone who suffers from arthritis is entitled to treatment.

For another thing, if long term solutions for these issues are not reached, patients with arthritis who rely on Medicare might have trouble accessing their doctors when they really need care. Or they may have to stop their arthritis therapy treatments because of the prohibitive cost. That just doesn't seem right to me.

As for me, more personally, RA is a chronic disease - one that I will literally have to deal with for the rest of my life. Someday I may need Medicare myself to get the arthritis treatment that I need. In the meantime, the structure of Medicare could potentially affect my own health insurance policy.

For this reason - for myself, my family, and other suffering from arthritis - I've asked my Representative to:

Extend the therapy caps exception process
NOT to cut Medicare physician payments
And to find long-term solutions to these issues so arthritis patients who rely on Medicare can have access to the health care they need and deserve.

This is an issue that Congress is working on right now - and they are only working on it until the end of February! So, while they are deciding what to do, it would be really great if members of Congress heard from people who really care about arthritis.

If you want to take action too, you can send a quick email to your Representative by clicking here.

The Post-Birth RA Flare

2012-02-02T15:05:00.002-07:00

In my opinion, there really isn't a lot of useful information out there about dealing with RA & pregnancy at the same time (which is one of the reasons I decided to share my story on this blog). Of the material that does exist, most of it is frustrating and scary rather than positive and uplifting. And you really have to dig through the depressing stuff if you want to find advice about how to conceive/improve your sex life while dealing with RA.

When you have RA and have actually managed to get pregnant, you start looking for a different type of information - help and advice for during and after pregnancy. Of the information that does exist on this topic, there are two points that the vast majority of articles seem to agree on:

(1) It is pretty likely that you will experience some kind of remission during your pregnancy. And I've already written a post about my thoughts on the big R-word.

It's the second point all these articles seem to make that has got me thinking (and worrying) lately:

(2) Shortly after giving birth, your RA is likely to flare. Badly. And, considering you will be recovering from giving birth and you will have a brand new baby to take care of, the unanimous conclusion is that it will really suck.

Take this recent article from the Huffington Post. The article starts:

Six months after the birth of her first child, Chaunté Smith couldn't get out of bed. She was in "excruciating pain."

Awesome. That sounds like a lot of fun. The article then continues with these gems:

"I could barely walk. I couldn't pick up my newborn."

"The pain is so excruciating you will know. You can't even flip a light switch."

She became very sick after her delivery, and when she had completed six weeks of breast-feeding, she resumed her regimen of medication.

(Also, here's my personal favorite quote from the article, which is actually totally unrelated to the point I am trying to make in this post. But it makes me so very mad that I just couldn't pass up commenting on it: Women can be affected by RA as early as in their 30s. Hahahahahaha. What a funny joke!!! Good thing I just turned 29 and I've already been dealing with RA for three and a half years!!!! Way to spread the ignorance that arthritis doesn't affect young people, Huffington Post. Grrr....Ok. Back to my point.)

To be honest, I'm not sure exactly how I feel about having this information about the extreme likelihood of having a nasty post-birth RA flare. I mean, I guess I'm glad to have the warning so that I can try to do something (anything!) to prepare for the inevitable. But, on the other hand, this article and others like it tend to make this flare sound extremely painful and difficult to deal with, and that's really scary to think about. And anxiety + pregnancy = really not a good thing.

To be totally fair, in this article Chaunté Smith hadn't been diagnosed with RA prior to getting pregnant for the first time - she had been perfectly healthy - so the RA symptoms after the birth were a total surprise to her. And I can totally see how a brand new baby could make an RA diagnosis extremely difficult and scary to deal with.

But I also think it is seriously scary to know that the flare is coming and that there is really nothing I can do to stop it. One thing all sources seem to agree is that the magic R-word will eventually wear off and the RA symptoms will flare - and usually much faster than in Chaunté Smith's case. She got six months, but most articles estimate a matter of weeks. And if I want to breastfeed my baby (which I do) I have to be ready to deal with whatever RA throws at me with almost no help from medicine. And I know that really won't be easy.

So when people ask me if I'm scared of giving birth I have to tell them that I'm honestly more scared about what will happen after that. I am really trying not to worry about the inevitable too much, but I have to admit that I have been thinking about it a lot lately.

We figure the very best thing we can do is hope for the best, but prepare for the worst. Adjusting to life with a brand new baby is obviously difficult enough all by itself, and since we will likely be dealing with the added complications of a nasty RA flare, APL and I have been working hard on making things as easy as possible for ourselves after we bring baby home - which will give us the greatest chances of being able to breastfeed for a while.

Thankfully both my mom and APL's mom have agreed to take shifts staying with us for a few weeks after the baby comes, and having some trusted help at home (especially from experienced ladies who know what the heck to do with a newborn!) will be a total lifesaver. We've also registered at MealBaby, which is a really cool site that lets your friends sign up to help you out by dropping off meals after baby arrives. And, of course, we're reinforcing our arsenal of heat/cool pads, wraps, and braces for my joints.

In the meantime, APL and I have been furiously researching baby gear to figure out which items might help make things as easy as possible for me when I'm achy and short on energy. We're planning to get a co-sleeper, which is like a bassinet that attaches to the parent's bed, so that baby can literally be within arms reach for feedings during the first few months while I rest or sleep in bed, without me having to even get up. We've registered for what is supposed to be a really great nursing pillow, with the hilarious name My Brest Friend, which will help me support the baby during feedings without straining all of my joints. And, I kid you not, last weekend we spent literally three hours in Babies R' Us folding and unfolding strollers and buckling and unbuckling clasps so that we can find a stroller/car seat combo that will be both lightweight and easy to use (right now we're looking at the Combi Cosmo + Shuttle 33 combo).

So we're doing everything we can think of to prepare for the inevitable post-birth RA flare - and I wanted to share our ideas in case you find them useful! And we are totally open to additional suggestions if you've got them!

Glee!!

2012-01-30T10:44:00.003-07:00

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!

The R-Word

2012-01-25T11:11:00.000-07:00

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 static 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.

Pre-Cancerous Spot

2012-01-20T15:41:00.001-07:00

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....

Good News, Everyone!!

2012-01-19T09:56:00.004-07:00

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.

19 Times!!

2012-01-17T09:44:00.000-07:00

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!!

Liebster Blog Award

2012-01-16T11:28:00.003-07:00

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 Dictionary.com 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.”

Awwwww....

So here are the rules of this award:

Thank the person who gave you the award.
Link back to the Blogger (or Bloggers) who awarded you.
Answer the following questions, down below.
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.

2012-01-16T10:41:00.000-07:00

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.

Parenting with Chronic Pain

2012-01-06T10:57:00.002-07:00

Some of you may have seen my first guest post on CreakyJoints.org - 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.

Miss Michigan Has JRA

2012-01-05T15:42:00.002-07:00

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.

Today's Award For The Best Person On The Planet

2011-12-29T16:03:00.002-07:00

First of all, I hope everyone had a very Merry Christmas, a very Happy Hanukkah, and, in general, a wonderful and relaxing holiday season. Check out the present I got this year - the beginning of my baby bump!! ~:o)

Today I went back to pilates for the first time in about a month. I stopped going several weeks ago to make time in my schedule (and in my limited energy) to go to physical therapy multiple times a week to attempt to fix the problem with my SI joint. Unfortunately, as I explained in my last post, that physical therapy experience didn't turn out to be successful. At all. And, as expected, the increased dose of Tylenol my rheumatologist put me on isn't helping significantly either. So I sent a message to my rheumatologist to find out what options I have for the next step, because the pain isn't really getting any better - but my belly is getting bigger! - and I'm worried about the pain increasing as my pregnancy progresses.

In the meantime, I went back to pilates. I am so very happy that I went. My pilates instructor totally wins today's award for best person on the planet! For one thing, after an hour stretching and bending and moving under the careful direction of my pilates instructor, I think my back is actually feeling a tiny bit better. And that is seriously awesome.

But, even more important than that, is how my pilates instructor makes me feel about my body. No matter what kind of crazy combination of problems I bring her, she always manages to find something that I actually can do. And it's never something simple - it's always a challenge. I find myself thinking and breathing hard and actually exercising, but all without much pain because of how precise she is with the movements she asks me to make and how much she thinks about it before she asks me to do it. Instead of giving up on me, my pilates instructor seems to deal with the complicated set of issues I bring to the table as a challenge that she is excited to face and figure out. Granted, she has had a year and a half to get to know the crazy that is my body, but she has been up to the challenge since day one. She makes me feel empowered that I can actually take control and do something about the issues my body throws at me - and that is worth more than anything else.

And I am so, so, so grateful.

SI = Sad Inside

2011-12-22T12:47:00.007-07:00

Several months later, my right SI joint is still not a happy camper. I have to be honest: it is really starting to get to me.

Since pain is certainly not foreign to my everyday life, I don't run to the doctor as soon as something starts hurting (or I'd be there constantly). I usually settle for stretching, taking it slow, taking some anti-inflammatory meds, and hoping it will go away. It's only after something bothers me for a good long while that I will give in and finally call the doctor.

So, when my lower back started bothering me on the right side back in October, I didn't think too much of it. I did some gentle stretching, took some Tylenol (which is safe for my pregnancy), and tried to ignore it. Then I got distracted by the lump I found in my armpit (when it rains it pours?). In fact, the pain in my back didn't really start to worry me until my pilates instructor told me in November that she thought it was being caused by some inflammation in my SI joint. The thought of the pain being associated with a joint started to make me nervous.

But I still put off calling the doctor until my OB told me that I ought to check in with my rheumatologist. So I did. And then my rheumatology team prescribed some physical therapy in an attempt to deal with the problem without having to take any extra meds. Thus, for the pasts couple of weeks I have been seeing a physical therapist twice a week to learn stretches, posture, and exercises to lubricate the joint, as well as getting focused massage in that area to try to get the muscles around the angry joint to relax.

Unfortunately, it really hasn't been helping that much. I'm not getting quite as much sharp pain as I was before, which is good, but I'm still dealing with a fairly large amount of dull, constant pain in my lower back on the right side. It hurts to stand. It hurts to sit. It hurts to lay. It hurts to carry. It hurts to lift. So most of the time I'm not exactly sure what to do with myself. My belly is finally starting to show, so I'm also starting to get a lot more nervous about the future. If I can't take the pain now, how will I deal with it when I've got extra weight to support? But I've been diligent with my stretches, posture, and exercises and I was still optimistic that my physical therapist/massage team would have something up their sleeves to get me through.

Until yesterday.

Yesterday, my physical therapist essentially gave up on me. We talked about how I was diligently doing everything they had taught me but that it still wasn't really helping. And, it seemed to me, she just got overwhelmed. I got the distinct impression that my combination of problems - SI joint pain, RA, and pregnancy - was just too much for her to figure out. It felt like she just wasn't up to the challenge. Instead of offering me PT solutions, she told me that she thought it was time for me to speak to my rheumatologist about anti-inflammatory meds or getting an injection in the joint. She even offered to cancel my upcoming appointments until I had a chance to speak with my doctor.

Maybe she's right. Maybe it is time fore me to move on and consider other options. But I left physical therapy feeling pretty discouraged about how she had basically washed her hands of my problem. I mean, I realize I have a complicated set of issues. I know that sometimes stuff is going to hurt no matter what I do because of the RA. I understand that being pregnant makes me difficult to treat because I can't do everything you want me to. But I just felt so discouraged that she didn't have any more ideas.

I did call my rheumatologist and the nurse got back to me this morning. He's going to have me try taking 650mg of Tylenol every six hours for the next week to see if that helps. Unfortunately, this doesn't seem to be significantly more Tylenol than I have already been taking on my own to deal with the pain - so I am not super optimistic that it is going to solve the problem. The next step is to consider an injection to the joint, but my rheumatologist says he would prefer not to do so, so that makes me nervous too.

I don't want to feel worried. I don't want to be stressed. It doesn't make me happy and I know it isn't good for the baby. But I can't help feeling a little overwhelmed by my inability to do anything at all about the pain in my back. And I'm starting to feel pretty scared that I have been working so hard for weeks to fix this problem but I haven't managed to make any headway. What on earth will I do as my belly grows?

Second Prenatal Appointment

2011-12-21T10:56:00.006-07:00

We had our second prenatal appointment, as well as our first trimester screening, a few weeks ago - but I decided to wait to post about it until I was done posting my secret posts so my story wouldn't get too out of order. Happily, all the results were very good!

We finally got to hear our baby's heartbeat, but the very best part was seeing our growing baby on the ultrasound monitor (the regular abdominal kind of ultrasound this time - not the kind they used last time). The thing that surprised us the most was that our baby was moving - and not just a little bit! The kid was practically disco dancing in there!! Kicking off the walls of the placenta, rolling over, waving arms around. Because the baby is still too small for me to feel, it actually didn't occur to me that he/she would be moving around in there, so it was really crazy to watch. Especially because the still picture doesn't really convey how vivid the video was - the video was so clear that we could even see the baby swallowing. It is so weird that the baby can be so very small and still have so many distinct features and so weird that it can be having a party in there without me even knowing it.

Then, after dancing for about 15 minutes and totally thwarting the ultrasound tech's attempts to get the measurements she needed, our baby fell asleep. And what I really mean here is stone cold passed out. Unfortunately, the baby passed out with its hands right in front of its fact, further thwarting the ultrasound tech's attempts at measurements - so the ultrasound tech had to jab me in the belly to try to get the baby to move its hands. It took at least 20 minutes for her to get all the measurements she needed - which was ok by us because it gave us time to stare open-mouthed at the little person dancing and sleeping inside of me.

So. Crazy.

Guest Post on CreakyJoints!

2011-12-20T14:58:00.000-07:00

Check out my first guest post over at CreakyJoints!

Secret Post #22: Kids, Even Unborn Ones, Are Expensive

2011-12-19T10:02:00.000-07:00

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

This Post Written November 18, 2011

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!

Today's pregnancy lesson: kids, even unborn ones, are expensive.

Every year in Boulder there is a week in November called "First Bite," where a bunch of fancy restaurants offer tasting menus - 3 courses for $26. It's a tradition among our friends to splurge on 2 or 3 nice dinners every year during this week. On Tuesday I wasn't feeling that great, but I forced myself to go to one of these dinners with my girlfriends. I ended up being able to nibble on some of the delicious food and really enjoying myself. And on Wednesday I felt better than I have in weeks and weeks.

Last night APL and I went with a bunch of our friends to have another nice dinner at a southwestern grill. I again wasn't feeling that great, but I really wanted to get out of the house and spend some time with all our friends. I forced myself to eat some of the food, thinking that would make me feel better like it did on Tuesday, but as the meal went on I only felt worse and worse, though I did manage to remain upright and even enjoyed talking with our friends for most of the evening.

But when we got home I immediately barfed up the whole fancy meal. Oops.

NOTE: This is the last post I wrote in secret before I announced my pregnancy, and so it marks the end of my secret pregnancy posts (and pretty much gives you the taste - ew, bad choice of words - of my first trimester). Back to posting in real-time when I've got something to say!!

Secret Post #21: Smoothies!

2011-12-18T10:11:00.000-07:00

This Post Written November 17, 2011

Morning sickness is the worst. It is constant, it makes you feel disgusting, and the only way to combat it is to eat - which is actually the very last thing you want to do. And the things you are willing to eat (read: able to force-feed to yourself) - saltines, bagels, cheerios - are hardly the most nutritious things on the planet. Happily, I have finally discovered a solution to get some much-needed nutrition into my body: smoothies.

Turns out drinking a smoothie is a lot easier for me than chewing anything when I am feeling nauseous. They are tasty, easy to make, and you can hide all kinds of good nutrients in there. Here is how I've been making my smoothies:

Frozen fruit (APL went to Costco and got big bags of frozen berries, peaches, and cherries)
Banana (great for potassium)
Skim milk (for calcium)
Greek yogurt (for protein)
Protein powder (for extra protein - I find getting enough protein significantly changes how I feel. A tip for tasting the powder less is to blend it with the milk before adding any other ingredients)
Flax seed meal (for omega-3s - also good to mix with the milk so you won't even notice it)
A cup of ice (some hydration is good for you too!)

That's what I came up with on my own. Then I did a little research on the What to Expect When You're Expecting website and came up with a few more ideas:

Calcium-fortified orange juice
Pineapple juice
Wheat germ
Peanut butter (oooh! peanut butter banana....)
Honey
Soy milk
Cooked carrots (if/when I start feeling brave?)

And let me tell you how much better I feel after consuming a smoothie!! SO. MUCH. BETTER!

Secret Post #20: SI Joint

2011-12-17T10:25:00.002-07:00

This Post Written November 16, 2011

Today I went to see my rheumatologist's assistant about the pain I have been having in my SI joint. Considering that I will be supporting considerably more weight in that section of my body over the next few months, having back pain during the first trimester is making me pretty nervous. Having it be associated with a joint is making me even more nervous.

But it turns out that RA doesn't usually affect the SI joint (usually). And though there are some other inflammatory diseases out there that do affect the SI joint (like AS: ankylosing spondylitis) apparently it's pretty rare for those to go hand in hand with RA. She said another option is OA in that joint (awesome), but that is also unlikely given my age. So this is a good thing - she said whatever is wrong with my SI joint it isn't likely to be caused by an inflammatory disease or OA.

She said it was more likely that the joint just got out of alignment and the muscles got mad. She prescribed some physical therapy, so I'm going to try that first. If that doesn't work then we are going to consider a short course of anti-inflammatories, as apparently there are a few that are considered safe at this stage of pregnancy (though of course we'll get my OB's approval if we go this route.)

Hopefully one or both of these plans will be enough to make the pain go away. If not, I'll have to suffer through it until the baby is born and it's safe to get some x-rays of the area. But, since the stretches I do every week with my pilates instructor actually do seem to help alleviate the pain (at least a little bit), I am optimistic that the physical therapy will be enough.

Even though my rheumatologist himself didn't have time for a full appointment with me today, he did pop his head in while I was with his assistant to say hi, see how I was doing, and offer his congratulations on my pregnancy. Also, my Arthritis Ambassador assignment this month was to ask my rheumatologist to join the Arthritis Providers and Researchers Advocacy Alliance and he told me today that he would join, which is very cool of him. His awesome nurse (who has helped me so much with insurance nightmares in the past) said congratulations too. The whole office is really excited for us, and that made me very happy. After all, these folks have been a big part of my life for the past three years. It's really, really nice to have their support.

In other news, I got a message today that the bloodwork from my first prenatal appointment came back. Everything looks good, except that my thyroid dosage needs to be increased a little bit. I'm actually really glad to hear that, because the increased dosage ought to help somewhat with the intense fatigue I have been experiencing.

In more different other news, I wonder if the nausea is finally starting to die down and if the cravings are starting to set in? Because I'm pretty sure I'd do anything for an In-N-Out burger right now. ~;o)

Secret Post #19: First Prenatal Appointment

2011-12-16T10:51:00.001-07:00

This Post Written November 15, 2011

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!

Yesterday we had our first prenatal appointment! The morning started out a little bit rough (I barfed in the driveway before we even left the house) but the appointment ended up going really well, though it took almost three hours.

First we met with a nurse who asked us a ton of questions about my health history and the health histories of our families. She answered a bunch of our questions too. Then I peed in a cup. Then we met one of the OBs (the clinic we chose has 5 practitioners who rotate during your prenatal care so that you are familiar with whoever is on call when you deliver.) The OB did a breast exam, pap smear, and finally an ultrasound - with ultrasound technology I didn't even know existed until it was literally inside of me (yes, you did in fact read that right, see below). Then I had to get quite a bit of blood drawn. Then we finally got to go home, where I went immediately back to bed for most of the rest of the day because I was seriously exhausted!!

Technology lesson: (a.k.a. Things No One Tells You!) Transvaginal ultrasound is not at all like the abdominal ultrasound you see on TV. Instead of doing the ultrasound through the woman's abdomen, a (rather large) probe is placed inside the vagina. Our doctor said it can be used in pregnancy when the fetus is too small to be seen via abdominal ultrasound. So there you go. You learn something new every day.

The slight awkwardness of the necessary technology was totally forgotten when we saw our baby on the monitor. The baby was looking right at us, its tiny eyes and arm buds glowing and its heart visibly beating in a circuit. But despite the, ahem, very intrusive technology and the fact that we were both standing right there looking at the monitor, both APL and I had the same thought: "look at that. Someone is having a baby." It still feels slightly surreal that it's us!

In slightly less great news, my SI joint is still misbehaving. My OB thought it would be a good idea for me to check in with my rheumatologist, so I have an appointment to see my rheumatologist's assistant tomorrow afternoon. I don't know whether they will be able to offer me any sort of relief from the pain, but probably best to keep my RA team in the loop with my pregnancy anyhow.

Secret Post #18: Continued Mostly Morning Sickness

2011-12-15T10:36:00.001-07:00

This Post Written November 4, 2011

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!

There's nothing like starting off your morning with a little bit of dry heaving. Ok, make that a lot of dry heaving. For the life of me I don't understand how I can feel like barfing when there is obviously nothing in my stomach to barf.

This week has been REALLY ROUGH. Constant nausea - and I'm not exaggerating when I say constant. There is currently zero food that is appealing to me. I've been force-feeding myself saltines and chicken soup and whatever else I think I might be able to (try to) keep down. Nasty headaches - and there's nothing safe to take to relieve them. Extreme boob and nipple pain - to the point where I've been sleeping in a sports bra. And while fatigue isn't exactly a new symptom in my life, combined with these other symptoms it has actually taken quite a toll on me. I feel like I have been hit by a truck - a REALLY BIG TRUCK - this pregnancy fatigue feels way worse than my RA fatigue ever was (though to be fair I am most likely dealing with pregnancy fatigue on top of RA fatigue). I really just want to lay on the couch and watch stupid movies all day, which, given my current lack of a job would be totally possible if I didn't have to pee every 15 minutes! Some nights the constant peeing keeps me from sleeping too.

Biology lesson: (a.k.a. Things No One Tells You!) It's common knowledge that pregnant women have to pee all the time, but I always thought that was just later on in the pregnancy when the baby is resting on your bladder. But no! The constant peeing starts right away - for me it was almost immediately after conception - because your blood volume is increasing to build the placenta.

I must admit that I honestly thought getting pregnant was going to be the hard part. Turns out being pregnant is way harder than getting pregnant ever was. (And, I assume we will soon discover that raising a baby is even harder than being pregnant).

As someone who functions on a regular basis while not feeling that great, I've actually been quite surprised about how extremely awful I have been feeling this week. And, more than that, by how incapacitated the not feeling good has made me. I have been entirely useless this week - accomplishing absolutely nothing (other than, you know, the baby I'm growing inside of me). I am so grateful that I don't have a job right now and that APL has been helping with things around the house - because I don't know how I would be functioning right now if I actually had responsibilities. How do women do it?!?! Go to work? Care for other children? Make meals when the sight of food makes you want to die? They are seriously amazing and I salute them.

Luckily, there is good news in all this horribleness: my doctor told me that the more early symptoms I experience the less likely I am to have a miscarriage. And, judging by how the symptoms have totally beat me up this week I'd say I'm carrying one strong baby! So, when I'm curled up on the floor next to the toilet, I try to remind myself that it's actually a good thing!! And (dear god knock on wood!) the morning sickness should only last for a few more weeks.

However, though the pregnancy seems to be progressing well, I have to admit that I'm still not sure exactly what my RA is doing. I've obviously been tired and sore - but is that from the RA or from the pregnancy? Is that feeling going to stick around when the morning sickness ends? (oh god, let the morning sickness end, knock on all the wood!)

And I did have a little bit of cause for concern at pilates last week. My instructor helped me figure out that what I thought was just general low back pain was actually coming from trouble with my SI joint (the joint in your pelvis). This makes me nervous because (1) I've never had trouble with my SI joint before and (2) clearly I'm going to be needing to use my pelvis in the upcoming months! I have pilates again today, so I'm looking forward to seeing if my instructor sees any improvement in that joint - though the pain hasn't seemed to change much over the course of the week. Then again, I've been so generally miserable that I think I need an outside opinion at this point.

I just have to keep reminding myself that whatever I end up having to go through - and whether my RA goes into remission or attacks me for the next 7 months - it will all be worth it so APL and I can start our family.

Secrect Post #17: "Morning" Sickness

2011-12-14T09:51:00.000-07:00

This Post Written October 27, 2011

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!

Well, I just barfed up my breakfast and my morning prenatal vitamins. And though I didn't actually barf yesterday, I had "morning" sickness literally all day yesterday. Like, every hour of the day.

I hope these intense symptoms mean I'm carrying a really strong baby! At least that's what I'll keep telling myself as I pray to the porcelain god.

Secret Post #16: Pregnant!!!

2011-12-13T09:20:00.001-07:00

This Post Written October 18, 2011

It's official! We're having a baby!!! My primary care doctor confirmed it last Friday. We are due in June and we could not be more excited! The months and months of getting off my RA meds to prepare, the resulting fatigue and extra joint pain, and the anxious process of "trying" paid off - and way sooner than we had dared to hope too!

I pretty much want to shout off the rooftops that I am pregnant, but since the chance of miscarriage is actually quite high during the first trimester we're going to try to keep it pretty quiet for the time being. Though we have told our families - and it was fun to hear how excited they all are!

As for my RA, if it is going to go into remission it hasn't done so yet, as I've been having a considerable amount of trouble with my hips (particularly the left side) and my knees. The frustrating part is that now there isn't really anything I can take to help with this pain - and it seems like some of my other pain relief options, like sitting in the hot tub, might be off limits too. So I'm still trying to figure out how to deal with that.

But, honestly, right now I'm so happy that I don't really care about the pain or the symptoms. They are all totally worth it!

The 2011 Jingle Bell 5K Run/Walk for Arthritis

2011-12-12T11:43:00.001-07:00

Just like last year, yesterday was a gorgeous, sunny day - the perfect day to take a walk!! Most of the alumni from last year's Team Z returned to walk again, and with a few more additions this year we had a team of 13 people and 3 dogs!!

APL and I went down to the walk early to volunteer. During registration, we each wandered around with a clip board and asked for signatures on a petition urging Congress to fund much-needed arthritis research. Between the two of us, I would say that we probably collected at least 100 signatures, maybe more. (Want to sign the petition yourself? There's an online version you can sign!). We also signed up those who were interested to become Arthritis Foundation E-Advocates, who will receive Action Alerts when important arthritis-related issues are debated on Capitol Hill and can now add their voices to the issue in less than 5 minutes. (Want to become an E-Advocate yourself? Sign up here! It's a super simple way to help out!!)

This year the Denver Jingle Bell Walk raised around $76,000 for arthritis research. Team Z was responsible for $2,055 of the funds raised - and we came in third for overall fund raising. Thank you so very much to each and every one of you who supported Team Z!!

I'm also excited that my friends and family, once again, walked coast-to-coast against arthritis!! My sister, her boyfriend, and two of their friends walked "with us" in Seattle yesterday. And my brother-in-law's girlfriend, MK, had a team of 12 at their walk in Arlington, VA on December 3rd. They dressed up as the 12 days of Christmas and won the costume contest for their walk!! (MK is particularly amazing for doing the walk this year as she was recently diagnosed with ankylosing spondylitis, another type of chronic inflammatory disease that primarily affects the SI joints, spine, and hip joints. She has her own blog about her journey with AS, and she is an inspiration!) Between the three teams, my friends and family raised over $3,500 for the Arthritis Foundation this year. And that is really amazing.

And how did I do volunteering and walking yesterday while pregnant and dealing with completely untreated RA? I'm not going to lie - I'm seriously achy today. My back, hips, legs, and ankles are killing me. Honestly I think the 2 hours I spent standing while collecting petition signatures was the hardest part - I was sore before the walk even started so I really struggled through that 5k. But I finished, and I'm really glad that I did. It felt like an important accomplishment to cross that finish line, holding River's leash and APL's hand - with our newest family member on board too.

Secret Post #15: !!!!!!!!!!!

2011-12-12T10:39:00.000-07:00

This Post Written October 13, 2011

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Secret Post #14: Fatigue

2011-12-11T17:26:00.000-07:00

This Post Written September 7, 2011

I know we have been extremely busy this summer - what with the wedding, the honeymoon, JA camp, my recent hip pain, and all the other busy weekends. But, even with all of this activity, it's not as if I'm any more busy than when I was in law school. In fact, considering that I am still currently unemployed, I am actually significantly less busy these days than in previous months.

I'm happy to report that, after taking the nabumetone for a week or so, my hips are feeling a lot better. But lately I have been experiencing a level of exhaustion and fatigue that I haven't had to deal with in a long, long time. I am not otherwise ill and my joints are all (mostly) behaving. But:

I am JUST. SO. VERY. TIRED.

Since I don't have a job, I have actually been spending a lot of my time resting. However, no matter how much I rest, I just can't seem to gain any ground on this fatigue. And that is really frustrating.

When was the last time I felt so very fatigued without an obvious explanation? Actually, it was about 3 years ago, before I really had my RA under control and just as the effectiveness of the Remicade started to wear off. Which means that, at the time, I was basically dealing with untreated RA. And today, having been off my meds for 8+ months so that it is safe to try to get pregnant, I'm basically in the same situation.

And it sucks. Particularly when I get in a grumpy mood.

The day before yesterday I saw a conversation on Facebook between two of my high school classmates that made me want to punch someone and/or jump out a window. Both girls are currently pregnant, and they were discussing the awful fatigue they are experiencing with their pregnancies. Don't get me wrong - they have every right to be frustrated by the fatigue they are experiencing. But it made me want to cry because while their fatigue is a temporary side-effect of their pregnancies mine is part of my everyday life and is turning out to be a huge hurdle to overcome in even trying to get pregnant in the first place!! Even three years later I sometimes get overwhelmed by the unfairness of it all.

Here's to hoping that I manage to reduce this fatigue at least slightly by my next ovulation. Otherwise this whole exercise is pretty pointless!!

Secret Post #13: My Axiety

2011-12-10T16:46:00.001-07:00

This Post Written August 8, 2011

Today someone very important to me found out that we have been trying to get pregnant, and she was very hurt that we hadn't told her about our plans. Despite my best efforts, I couldn't seem to explain that it was my own anxiety and mistrust of my body - not anything to do with her - that kept us from sharing. I found it really hard to explain what it is like to be actually afraid of what your own body might do - to feel pressure that it won't be able to perform to the point where you are almost embarrassed to admit what you are trying to do for fear it won't even be possible. Somehow I found it impossible to explain how progress checks, however well-meaning, would only exacerbate my anxiety.

When APL and I made the decision not to tell anyone that we were trying to get pregnant, at least for the first few months, we did it with the intent to reduce my stress level and make this difficult process a little bit easier. We never meant to hurt anyone, and I'm frustrated that we did.

I'm also frustrated that something that is supposed to be so joyful can become so complicated and difficult. And, not counting the months I spent coming off my meds, we have only been trying for three months!! It could get a lot more complicated and difficult than this - and that makes me anxious to think about.

Secret Post #12: New Hips Please

2011-12-09T10:53:00.000-07:00

This Post Written July 29, 2011

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

I am ovulating this week.

THIS IS REALLY NOT A GOOD TIME FOR MASSIVE HIP PAIN.

NOT. AT. ALL.

RA, sometimes I really, really hate the impact you have on my life. I'm trying so hard to accept you and adjust to you, but you always seem to find new ways to make it difficult for me to do the things I want to do.

It makes me so sad.

Secret Post #11: Doing What's Best for Me

2011-12-08T10:27:00.000-07:00

This Post Written July 28, 2011

Today I posted about Christina, who started her own blog because there are so few resources out there for women trying to get pregnant while dealing with arthritis. And I wholeheartedly agree!! I am one of those women looking for resources!!

I have to admit that Christina's bravery in telling her story has provoked some feelings of guilt for keeping my own story a secret for so many months, especially after being so open about everything else on this blog for the pat few years. I am aware that this blog is itself a type of resource for others out there, though a small one, and maybe I could be making a difference in the lack of resources for women with arthritis trying to get pregnant. It's a really weird feeling - to feel guilty about maybe possibly not helping someone who could potentially use it. But it's how I feel today.

However, it still holds true that my biggest worry related to pregnancy and RA is the anxiety and pressure of having to "try" to get pregnant with a body that I feel like I just can't trust anymore. I'm irrationally worried that my body will be physically incapable of getting pregnant - which is why it worries me so much to have everyone know that we are trying. I know that questions and comments from friends and family would be well-meaning, but I'm afraid that if it takes us a while to conceive the concern of our loved ones might actually turn into a stress factor that would make it more difficult than it already is to conceive. So I'm doing what's best for me and holding my tongue about it, at least for now.

Hopefully, when I am able to publish the last 11 secret posts (and whatever secret posts come after this one) I will actually be able to contribute to the lack of resources out there. In the meantime, I'm glad I could tell the world about Christina!

Secret Post #10: Losing My Job

2011-12-07T10:09:00.003-07:00

This Post Written July 12, 2011

Losing my job certainly throws an interesting wrinkle into our plans to start a family. We specifically chose this time period to try to have a baby because we thought both of us had stable jobs to give us a solid start. And now I have no job at all.

I think an ordinary couple might put off trying to get pregnant for a couple of months and focus on figuring out how to pay the bills. But we are not an ordinary couple. We've already come way too far in our journey of getting me off my meds to get my body healthy enough to conceive. We're not even pregnant but we've been preparing for this baby for months and months already. We can't give up now. We have to keep trying and hope for the best.

But it does throw an interesting wrinkle into looking for a new job. Not only do I have to decide whether or not to tell them about my RA, but there's also a possibility that I would need to go on maternity leave very soon after starting. It makes things...complicated.

The Cookie Press

2011-12-06T09:54:00.003-07:00

This weekend, I decided that I wanted to try the cookie press that my aunt gave us as a wedding gift. So I contacted my aunt, got my Nana's cookie press recipe, and gave it a go. Having never used a cookie press on my own before, I was a little unsure about how sticky the dough was supposed to be, so I think I might have added a little too much flour. But the cookies still turned out super cute and they were really fun to make.

Unfortunately, squeezing the trigger on the cookie press turned out to be too difficult for my hands after a couple of sheets. My hands just sort of ran out of steam, and that was a little bit frustrating. Luckily, APL wanted to help and he turned out to be a champion cookie presser! And then we got to bake cookies together, which was way more fun than doing it all by myself.

Secret Post #9: The Truth About Lube

2011-12-06T09:47:00.001-07:00

This Post Written July 1, 2011

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

In articles about how to improve your sex life with RA (and articles about how to improve your sex life in general) one piece of advice that is given regularly is to incorporate the use of lube. I personally think it's good advice. Lube does make things a lot easier - allowing you to focus your attention on overcoming other hurdles, such as joint pain or fatigue and, of course, enjoying yourself.

Except if you are trying to conceive. This is a very important piece of information that I just stumbled upon, and I can't seem to figure out why it isn't mentioned in articles recommending the use of lube.

Because here is the truth about lube: it can actually reduce your chances of getting pregnant. Apparently, most types of lube slow sperm down, making it more likely to die before reaching the egg and, thus, making you less likely to end up pregnant. Here are some reputable sources that agree: The Bump, Baby Center, Baby Hopes and MedicineNet.

Luckily, for those of us who already have enough hurdles to overcome in trying to conceive, there appears to be a "fertility friendly" lubricant out there: Pre-seed (worst name ever? Possibly.) They claim that Pre-seed "mimics natural body secretions to relieve vaginal dryness while providing an optimal sperm environment."

Personally, I think it's worth a try. With all the complications presented by my RA, figuring out how to even have sex in the first place can be difficult enough. I don't need anything reducing my chances of getting pregnant! So we're going to try Pre-seed. And I guess only time will tell if it helps!

Secret Post #8: Expert Advice For Improving Your Sex Life With RA

2011-12-05T11:21:00.002-07:00

This Post Written June 28, 2011

TMI Warning: This post contains details about sex and trying to get pregnant that you may consider to be too much information. For reals, this entire post is about sex. Don't say I didn't warn you!

After reading fifty articles about sex and RA, I have compiled any and all useful information and advice the articles offered about actually improving your sex life when you have RA (and I've left out all the depressing stuff!) I have grouped that advice into several categories below. While I am not sure I agree with every single piece of advice, this list pretty much covers what "the experts" out there have to say (at least according to my research).

And, if you're brave enough to muddle through all of the horrifying statistics, I have also included links to all the articles I read at the end of this post (some of which were 100% useless). The titles of most of the articles are depressing enough. Read them if you must - but don't say I didn't warn you.

Expert Advice For Improving Your Sex Life With RA

Sex is Not Just Intercourse
(NOTE: This is probably the largest category of advice out there about sex and RA - the general idea being to find other fun activities if the difficulty of having intercourse is too much to overcome. While this advice is pretty much the opposite of useful when attempting to get pregnant, I've included it here because it is certainly relevant if you are just looking to improve the pleasure you get from your sex life.)

Remember that sex is not just intercourse. There are many other ways for you and your partner to find pleasure with each other.
Other ways to feel satisfied and intimate besides intercourse include: synchronized breathing, eye gazing, fantasizing, guided imagery, visual stimulation, holding hands, hugging, cuddling, touching, kissing, sensual massage, oral contact, stroking, fondling...

Work on Your Relationship

(NOTE: After promoting other forms of sex and intimacy besides intercourse, the next biggest category of advice out there about sex and RA falls into the relationship category. I am certainly not trying to downplay the importance of this advice - the way I see it every relationship should work on these things. APL and I certainly have. But, even when your relationship is strong you may still find that sex with RA can be difficult - hence my search for other useful advice that specifically addresses dealing with RA.)

To improve your sex life, make sex a priority.
Try to work as a team at all times.
Work with your partner to reduce other sources of stress.
Find ways to improve your emotional connection with your partner.
Be patient with yourself and your partner.
Stay positive through the process of trial and error.
Keep a sense of humor.
If you encounter setbacks, try not to become discouraged.
Open and honest communication about your needs, desires, and difficulties is vital.
Try beginning your sentences with "I" and not "you." For example: "I feel loved when you hold me close" is more likely to invite dialogue than "you never touch me anymore."
Consider outside help - your doctor, couples counseling, etc. - if you have difficulty communicating with your partner about sex.

Incorporating RA Into Your Relationship

Make sure your partner understands how RA works and the pain it causes you.
Try to think of the difficulties caused by RA as "our" problem - not the sole problem of the partner with RA.
Focus on promoting new intimacy and appreciating what you have - try not to have expectations of "good sex" before RA.
Remember that both partners do not have to participate equally on any given day.

Things You Can Do To Prepare For Sex

Do things that help you feel good about yourself and improve your confidence - a new outfit, a new haircut, a song that makes you feel good.
Don't be embarrassed to talk to your doctor about medications that may impact your sex life - or about getting pain medication to assist with your sex life.
Your doctor or physical therapist can recommend exercises to help with stamina and mobility.
In your everyday life, pay attention to the types of movements you can do without pain and bring those types of movements into the bedroom.
Right before sex, do some gentle stretches to improve your range of motion.
Consider taking pain medication or muscle relaxants 30 to 60 minutes before sex.
Try a warm bath or shower to limber up before sex - perhaps with a partner as foreplay.
Have your partner give you a gentle massage as foreplay and to help with stiffness.
Use an electric blanket before or during sex to help relieve stiff joints.

Timing

Plan ahead for sex and arrange your day so you won't be tired from other activities.
Try scheduling a nap before sex.
Consider what time of day (morning, noon, night) you are least sore/fatigued and have sex at the appropriate times.
Be open to having a "quickie," which causes less strain and exhaustion.

Experimentation

Try having sex at different times of day to see what works best.
Experiment with different positions (see below) and be open to changing positions halfway through if necessary.
Be creative and laugh together if it doesn't work.
Incorporating shared masturbation can be fulfilling when one partner is unable to be very active.
"Fake it 'til you make it" - focus on enjoying yourself rather than your pain and fatigue and eventually the enjoyment might come naturally.
Let your partner know during sex what is working and what is painful with words, sounds, or a gesture you agree upon in advance.

Sexual Aids

Use lots of pillows or other pieces of furniture for extra support.
The Liberator line of pillows is specifically designed to support you during sex.
To ease strain on arms, hands, and jaws try props and toys - like vibrators. You can order on the internet for discretion, or consider visiting a respectable sex shop to make sure you can operate the buttons.
Consider using over-the-counter lubrication - such as KY Jelly.

Positions

(NOTE: Of the fifty articles I read perhaps four or five had anything specific to recommend concerning positions. These articles primarily talked about the positions in terms of heterosexual relationships and they seemed to assume that the woman was the one with RA. Obviously that is not always the case. However, I have chosen to keep the wording used by the experts in the hopes of clearly communicating the positions they were talking about, but know that these positions can obviously be adapted to any situation.)

For back pain

Avoid sitting positions.
Being on the bottom may reduce back discomfort.

For hip pain

Avoid being on top.
Turning your legs out (i.e. pointing your feet away from each other) is generally more comfortable.
Try positions that do not require you to spread your legs too widely.
Try having the man approach from behind:

The woman lies on her stomach, supported by cushions, and the man lies over her, supporting his own weight and entering from behind.
The woman leans her upper body over a chair and kneels on a pillow on the floor (assuming no knee pain) while her partner enters her from behind.
Spooning: both partners lay on their sides, with the man entering from behind.

For wrist/hand/elbow pain

Lying on your back or side is best so you don't have to support your own weight.
Try making a fist and keeping the wrist in a neutral position.
Support elbows with soft pillows.

For ankle/knee/leg pain

Maintaining the knees in a straight position is best.
Avoid kneeling or bearing too much weight.
If on your back, avoid having to lift or support your legs during sex, which can cause strain.
Use pillows - such as one under each knee - or your partner's body to support your legs.
Spooning: both partners lay on their sides, with the man entering from behind.
Try the "crossways" position: the man lies on his side and the woman lies crossways/sideways against him with her bottom touching his lower thigh and her legs bending over his body.

For fatigue

Avoid positions where you have to support yourself.
Pillows under her hips may make the stimulation greater, allowing for orgasm in less time with less strain.
Be open to a "quickie."

SOURCES:

WebMD: The pain of RA does not have to mean the end of sexual intimacy.
WebMD: 1 in 3 RA Patients Report Considerable Impact on Sexual Activity
WebMD: RA and Intimacy: Keeping Relationships Strong
Healthmonitor: Ask the Experts: Sex and RA
Dr. Gail Saltz: Dating, relationships, and sex with RA
HealthCentral: A beginners guide to RA: Love & the Horizontal Tango
HealthCentral: When Satisfactory Biologics Are Not Enough: Satisfying Sex with Rheumatoid Arthritis
UW Medicine: Sex and arthritis
Everyday Health: Rheumatoid Arthritis in the Bedroom
Disabled World: Sex lives of patients are negatively affected by rheumatoid arthritis and SLE - Patients and their partners suffer but most reluctant to seek professional help.
Celebrities with Diseases: Rheumatoid Arthritis can negatively affect sex drive
About.com: Love, Sex, and Arthritis
About.com: In Sickness and in Health
About.com: Guide to Sexuality and Arthritis
About.com: How Arthritis Complicates Sexuality
About.com: Position Tips for Avoiding Painful Sex
About.com: How to Enjoy Sexuality Despite Chronic Pain
About.com: Chronic Illness in a Marriage
Arthritis Today: Health Benefits of a Happy Marriage
Arthritis Today: Playing the Dating Game with Arthritis
Arthritis Today: Marriage and Chronic Illness: One Couple's Story
Arthritis Today: Keeping your Marriage Strong
Arthritis Today: Marriage and your Health
Arthritis Today: Rheumatoid Arthritis and Pregnancy
Arthritis Today: Pregnancy and Arthritis
MDJunction: Rheumatoid Arthritis Sex Newsletter
Mayo Clinic: Chronic Pain Can Interfere with Sexuality
The Johns Hopkins Arthritis Center: The Influence of Rheumatoid Arthritis on Marital Satisfaction
SeniorJournal.com: How to Have Pleasurable Sex Despite Painful Arthritis
MyDr: Arthritis: sex and intimacy
ArthritisInsight.com: Sex and the Married Gimp - A Woman's Point of View
National Rheumatoid Arthritis Society (NRAS): Sex & Rheumatoid Arthritis: "How Was It For You?"
National Rheumatoid Arthritis Society (NRAS): The Effects of Rheumatoid Arthritis on Sexual Activity & Relationships
Arthritis Care: Relationships, Intimacy, and Arthritis (PDF)
Arthritis Care: Body Beautiful
Arthritis Care: 50% of people with arthritis in Wales say pain prevents them from having an intimate relationship, according to a survey by Arthritis Care
Daily News & Analysis: Rheumatoid Arthritis can dampen sex life
Fifty is the new Forty: Dr. Gail Saltz: Rheumatoid Arthritis, Sex & Romance After 50
Physorg.com: Sex lives of patients are negatively affected by rheumatoid arthritis and SLE
MSN: Yes, You Can Have an Active Sex Life With Arthritis
Pharma Knowledge Base: Rheumatoid Arthritis and Sex
American College of Rheumatology: Sex and Arthritis (PDF)
e! Science News: Sex lives of patients are negatively affected by rheumatoid arthritis and SLE
A Woman's Touch Sexuality Resource Center: Rheumatoid Arthritis and Sexuality
Zeenews.com: Rheumatoid arthritis can dampen sex life
Everyday Health: Ask Dr. Rodanthi Kitridou: Sex with Arthritis
OneIndiaNews: Rheumatoid arthritis can dampen sex life
healthtalkonline.org: Living with rheumatoid arthritis: Social life & relationships
lifescript: Don't Let Arthritis Spoil Your Sex Life
Health.com: Yes, you can have an Active Sex Life With Arthritis

Secret Post #7: Let's Talk About Sex, Baby

2011-12-04T12:18:00.000-07:00

This Post Written June 27, 2011

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

No matter how long I have been off my meds to prepare my body for pregnancy, to get pregnant I still have to have sex with my husband. That part is not rocket science. However, sometimes figuring out how to have sex while dealing with untreated RA feels a lot like rocket science. My knees hurts, my hips hurt, my jaw hurts, my fingers hurt, my mobility is limited, my body is stiff, I'm fatigued, I don't feel particularly sexy, and to top it all off, I feel guilty and frustrated about all of those things!! A girl could use a little help and advice!!

But have you ever Googled "sex and RA" looking for advice?

I have.

I really don't recommend it.

Unfortunately, the vast majority of the articles out there addressing the topic of sex and RA are seriously depressing. In order to weed out any potentially useful information or advice you have to wade through multiple paragraphs of horrendous facts and statistics about how likely your sex life is to suck after getting diagnosed with RA. In fact, it is shocking how often these depressing facts are repeated without offering much advice for how to overcome them. Facts such as:

If you have RA, enjoying sex is "likely to be difficult" and you may need to reduce your expectations of your sex life.
Studies show that RA substantially diminishes the sex lives of 1 in 3 patients, and 1 in 10 say sex is out of the question.
People with RA can have poor self image - from joint deformities, weight gain, facial swelling (moon face), hair loss, depression, reduced libido, lack of endurance, medication-related vaginal dryness, etc. - which can seriously damage their sex lives.
The healthy partner is often afraid to initiate due to a fear of hurting the person with RA or being rejected, while the partner with RA often feels guilty about "holding back" their healthy partner. This promotes feelings of insecurity and anxiety, which only worsens the problem.

I'm sorry, did you just say that 10% of people with RA don't have sex at all?!?! (Actually, I found a French study where the number was 40% and an English survey where the number was 50%!!) Also, thanks for that all-inclusive list of every single hurdle I have to overcome to feel sexy - I had actually managed to forget about a few of those and I truly appreciate being reminded!! I even found one article where a woman blamed her pending divorce solely on the impact her RA had on their sex life, and another article that said 85% of marriages faced with the challenges of chronic illnesses eventually fail.

And the advice that is most often given to fix these horrendous issues?

Find other ways to feel satisfied and intimate besides intercourse: synchronized breathing, eye gazing, fantasizing, guided imagery, visual stimulation, holding hands, hugging, cuddling, touching, kissing, sensual massage, oral contact, stroking, fondling...

While I appreciate that there are important types of intimacy besides intercourse, a lot of the articles sound like they are telling you to give up on intercourse all together! And that's a problem for me, because I'm pretty sure I can't get pregnant from holding hands!

Reading these articles is enough to make you want to crawl under a rock and cry. Or possibly die. My point is - they are not exactly uplifting.

And, although there are quite a few useful articles (and a great book) about pregnancy and RA, surprisingly those resources don't give much advice at all on how on earth you are supposed to get pregnant in the first place! I'm have no idea why they skip that step - it seems pretty relevant to me!!

Thus, I have embarked upon a quest to read as many articles about sex and RA as I can stomach. I will then weed out all the horrifying and depressing statistics, and compile a list of actual useful and hopeful advice from experts on improving your sex life when you have RA. It will be in my next post!

Secret Post #6: There's An App For That

2011-12-03T10:29:00.002-07:00

This Post Written June 26, 2011

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

The first step to conceiving a baby is to have sex around the time that you are ovulating (duh!) But did you know that the egg is only ready for fertilization about 12 to 24 hours a month? Luckily, sperm are able to live anywhere from three to six days, so that gives you a slightly bigger window of opportunity. Especially if you are trying to conceive while putting up with the results of untreated RA, it really makes sense to have a good idea of when you ovulate - so that whatever attempts you are able to manage count!

So how do you know when you are ovulating? There are a lot of methods for finding out. Here is an article that gives five methods.

I chose to start by tracking my periods. I started keeping track way back when we first made the decision that I should go off my meds, so by the time it was safe for us to start trying I already had many months of data from which to predict my ovulation. But instead of writing stuff down and doing the calculations myself, I found there was an easier way. That's right - there's an app for that!

The one I am using is called Period Tracker Deluxe. I started with the free version and then paid $1.99 to get more features and get rid of the ads. The icon on my phone is a little flower and says "P Tracker," so it's not quite so obvious what it is, plus you can set it up to have passcode to keep your period data private.

With a tap of the button on the main screen, you indicate when your period starts and when it stops. From that data, the app calculates the average length of your period and projects when your next one will occur. After entering a few months of data, I found it to be pretty accurate in predicting my period start date (assuming you have regular periods). Using the same data, the app also predicts which day you ovulate and indicates that you are likely to be fertile for a day or two around it.

You can also keep track of other symptoms like cramps, headaches, heavy flow, etc, and you can indicate on the calendar when you are intimate, which will be useful for determining your baby's due date when you do get pregnant. (Extra TMI Warning!) There's even a section for keeping track of the consistency of your cervical mucus, the position and texture of your cervix, and your basal body temperature - information that can be used for an even more accurate prediction of ovulation. Or, if you use an ovulation predictor kit and know for sure, you can input that information as well.

All in all, I think it's a pretty good app.

Secret Post #5: Positive, Uplifting, Hopeful, and Useful Advice

2011-12-02T09:56:00.000-07:00

This Post Written June 25, 2011

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

For anyone who is trying to conceive, it is always in their best interest to get pregnant sooner rather than later. Sex is supposed to be fun, and getting pregnant sooner reduces the chances of "trying" becoming a horrible, stressful chore.

But, since I have RA, there are many other reasons that sooner would be better than later. For one thing, the longer I am off my meds (i.e. living my life with RA that is not fully treated) the more pain and fatigue I am likely to experience. And, obviously, the more pain and fatigue I experience the more difficult it will become to even have sex in the first place. Also, the chance of permanent joint damage increases as the time between me and my last dose of methotrexate increases. And it's not like I will be able to get back on my RA meds anytime soon - even after I get pregnant it will be at least nine months before it is safe for me to start taking my meds again, and longer if I want to breastfeed my baby. So, yeah, sooner would be better.

This is obviously not a blog about how to get pregnant - this is a blog about living with RA. However, it seems to me that having RA creates really unique issues when trying to conceive. Unfortunately, these issues aren't really addressed by any of the literature out there (or at least not that I can find). There are plenty of depressing articles about how difficult your sex life is likely to be with RA, but these articles contain scant advice for making sex easier. There are a bunch of articles (and a great book) dealing with RA and pregnancy, but none of these seem to address the complicated issue of getting pregnant in the first place! And, as far as how easy it is to get pregnant when you have RA, I found this delightful new study called "Rheumatoid arthritis makes getting pregnant harder." None of this is very useful or hopeful!!

The only real advice that seems to be out there for women with RA who want to get pregnant is that they should stop taking meds that might cause birth defects before trying. But, at least to me, it just doesn't seem that simple.

While it's obvious that having RA makes pregnancy more complicated, I know that it does not make it impossible! Plenty of women out there with RA are also moms! It can totally be done!! So I really feel like someone ought to be handing out positive, uplifting, hopeful, and useful advice about how to make that dream come true - but I can't seem to find anyone who is.

I am not a doctor. I am not an expert. I'm just a girl with RA who would really, really, really like to be a mom with RA. And I know I'm not the only one out there! So I am going to track down whatever positive, uplifting, hopeful, and useful advice I can find about actually conceiving when you have RA and post on this blog. Because it's not impossible. And I think that should be made more obvious.

Secret Post #4: Now We Have to "Try"

2011-12-01T11:38:00.001-07:00

This Post Written June 20, 2011

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

Our wedding turned out to be amazing, despite the rain, and I actually ended up feeling great! And we had a phenomenal time on our honeymoon - what an adventure!

However, sadly our master plan to get pregnant without trying while we were on our honeymoon didn't end up working out. So now we have to "try" to get pregnant - and sooner would be better than later to reduce the amount of time that I have to be off my meds, which will also reduce the chances of joint damage in the future.

I have to admit that I'm a little nervous about "trying." Sex can be difficult enough when you have RA, and the thought of doing it a lot is a bit overwhelming (ok, make that a lot overwhelming), especially because I am not sure how I will be feeling. Also, I'm honestly still nervous that I can't trust my body to "do the right thing" and get pregnant at all, especially since it has done so many other things out of my control over the past three years.

But we're keeping our hopes up.

Secret Post #3: Second Thoughts

2011-11-30T09:10:00.000-07:00

This Post Written May 10, 2011

I'm not going to lie - with the way I've been feeling lately, I have to admit to having a few second thoughts about my decision to go off my meds before the wedding. I guess it's normal to have second thoughts about any big decision with pros and cons, but I can't seem to stop myself from thinking about how strong I was feeling before I went off my meds. And now I am feeling considerably weaker, and starting to get pretty nervous about how I will feel at my wedding. Every once in a while the thought crosses my mind: have I ruined my enjoyment of my own wedding?

But, whenever I express these concerns to APL, he reminds me that it was because I was strong, because I was doing well, that we were able to make this difficult decision in the first place. And he reminds me that he will be there to love and support me no matter how I am feeling. So, though I have to admit to having a few second thoughts, overall I'm still happy with my decision because it is bringing us one step closer to a family of our own.

Surgical Consult

2011-11-29T12:57:00.000-07:00

This morning I started out my day by barfing up my breakfast - delightful! (Come on, morning sickness! I thought we were just about done with all of this!!) Then I got in the car and drove to the hospital for the surgical consult on my armpit lump.

I actually thought the lump had gotten smaller, because I can't really see it in the mirror like when I first discovered it, but the surgeon said it was about the same size as when I had the ultrasound done. In any event, it hasn't gotten any bigger - and that's good news. The surgeon said it also felt like a neural tumor to her, which is benign, but of course the only way to be sure is to take it out and look at it under a microscope.

Unfortunately, it turns out we can't (well, shouldn't) do the surgery until I'm farther into my second trimester. I mean, we could do surgery right now if it were absolutely necessary, but the risk to the baby is a lot higher while his/her organs are still forming. So we're going to wait six weeks and then I'm going to go back and be re-evaluated. If it's still the same, I'll probably have surgery that same week, at which point they feel it will be minimal risk to the baby.

So let the waiting game begin! Wait to stop barfing up my breakfast. Wait to see what the tumor will do. Wait for possible surgery. Wait to see if my RA will actually go into remission. Wait to see if I'll regain any energy. Wait for the baby....

Secret Post #2: This Time It Was My Choice

2011-11-29T09:15:00.002-07:00

This Post Written April 29, 2011

April has been a total whirlwind of good and bad, happy and sad. In the post I actually published today, I was totally honest when I explained how I have been feeling lately - I'm achy! Extremely achy, actually. And I've been dealing with quite a bit more fatigue than I was a few months ago. However, I was also honest in my post today when I said, despite the extra pain and fatigue, I'm really doing ok with it. I'm happy and excited for my wedding and I'm doing a really good job of making sure I rest enough to (at least hopefully!) prevent me from crashing any harder.

But I wasn't completely honest today about why I'm feeling extra achy and tired. Yes, I traveled a lot last week, and that has a lot to do with it. But I am also fairly certain that part of the extra trouble is from my incompletely treated RA. Which, actually, is another reason that I am ok with the extra pain and fatigue I've been experiencing - I know I'm going through it so that APL and I can achieve our dream of starting a family. And if that's not for a good cause, then I don't know what is!

I can feel a pretty major difference in my body since I started coming off my meds a few months ago.
Honestly, I was most surprised by the difference I felt when I stopped taking methotrexate. I stopped that one first - because it needs to be out of your system the longest before it is safe to get pregnant. Before stopping, I knew methotrexate was helping to prevent long-term damage of my joints, but I really didn't think that it was doing anything to help me feel better on a day-to-day basis. And I was wrong.

I remember when I first got diagnosed with RA, my rheumatologist had me only on methotrexate for about a month, and I remember feeling really frustrated that it wasn't helping me feel better at all. In fact, as we moved along and tried other drugs that did help me on a day-to-day basis (prednisone, Remicade, Enbrel,) I became increasingly annoyed about having to take the methotrexate at all, because I only noticed bad side effects from it - hair loss, tooth decay, potential liver damage requiring lab tests every couple of months, extra fatigue for a day or two after taking the dose, etc.

So when I came off the methotrexate I was actually quite surprised when I did notice a difference in my body. Almost immediately I felt just a tiny bit more achy for no apparent reason - like I had worked out a little too hard or not rested quite enough, but I hadn't actually done those things. Apparently the methotrexate had been doing something to help me on a day-to-day basis. Although I obviously haven't loved dealing with the extra pain and fatigue lately, I actually do appreciate knowing that the methotrexate really was helping me. I think I'll feel better about the drug when I finally start taking it again.

Before we decided we wanted to try to start a family after the wedding, I was depending on a bunch of meds to control my RA. Now every day that goes by I'm a little further away from the combined benefits those meds were giving me. Overall I would say, despite a little extra pain and fatigue, things are going pretty well with the process of stopping my meds (so far! knock on wood!).

The weirdest part for me has been a slight feeling of instability. (I'm not quite sure how to explain this, so please bear with me.) When I first got diagnosed with RA, aside from a lot of horrible pain and extreme fatigue, one of the worst things I had to deal with was instability - I felt like I had zero idea what my body was going to do next. I didn't know what I would have to deal with tomorrow, and dealing with that every day made me lose a lot of trust in my body.

Since that time it has been a massive up and down battle to try to re-gain some stability in my life and my body. For example, when I first went on the Remicade and it felt like it was working, I gained a little stability back, but then I lost it again when it turned out the Remicade wasn't working. Thankfully, I have steadily been re-gaining my stability since I started with Enbrel - which, believe it or not, was almost exactly two years ago! Getting to a point where my RA treatment was working and felt stable was really important for me, because - obviously in addition to the fact that I was physically feeling a lot better - it helped me to re-gain some trust in my body. While I never got to a point where I felt like I could control my body, at least I had reached a point where I felt like I knew what to expect, which was huge relief.

Since beginning the process of trying to get ready for pregnancy, I have definately lost some of the stability that I worked so hard to gain over the past few years. These days, I don't quite know what to expect. I'm not really sure how my body will continue to behave now that I'm off my meds. That's what I mean by a feeling of instability - I feel at least a little nervous and shaky all the time now, like anything could happen tomorrow.

However, it is definately a different type of instability than I felt when I first got diagnosed with RA. That instability came from a place of shock and fear and despair and denial over the loss of control of my own body. The instability I feel today is totally different because it is my choice. I was able to consider all the pros and cons before accepting this instability into my life and, with APL's help, I now have the tools to deal with it. This instability is an investment in the future of my family.

And let me tell you - that makes all the difference.

Secret Post #1: I've Already Stopped My Meds

2011-11-28T15:44:00.004-07:00

This Post Written March 24, 2011

I don't usually draft my blog posts - I just write whatever I'm thinking about and post it immediately. But this topic is different.

Usually it helps me to be painfully, unflinchingly honest about my feelings and experiences with RA. I tend to sort out my own feelings while I write, and posting right away often sparks dialogue with people who are going through the same thing, which I find useful. But, unlike most topics, this time I see a downside to telling all the world what I think and feel right now.

However, after relying on this blog so heavily for the past 2+ years to sort out my feelings, it feels really weird to spend so much time thinking about something I'm not writing about, especially when it is a topic that is so centrally related to my life with RA. This blog has always, always been about providing an honest record of my experiences with RA - and I feel like I'm holding out on people who could learn from my experiences with this topic. Or missing a chance to get connected with people who could help me.

But I also know that I need to do what is best for myself, and right now I don't think it will help me to post about this topic. So I am writing a secret post - as a record of how I feel today - that hopefully I will be able to post on the blog someday. Though I don't know when.

The truth is this: when I wrote the post entitled Arthritis, pregnancy and the path to parenthood the other day, I had already started the journey of coming off my arthritis meds to prepare myself for pregnancy. Which is why, in particular, I found Suzie May's book to be so incredibly helpful - full of useful information, perspective, and hope as I embarked on a difficult process.

APL and I have been together for 8+ years, so we've actually been talking about wanting to have a family together for a long time - probably even before the RA diagnosis. RA just put in an extra layer of complication to a goal we already had. Over the course of many hours (days, weeks, months) of discussion, we figured out that my biggest worry related to pregnancy and RA was not actually the pain of having to come off meds (which, of course, probably won't be pleasant) but rather the anxiety and pressure of having to "try" to get pregnant with a body that regularly does stuff that I have no control over whatsoever.

In a perfect world, we would have just stopped using birth control after the wedding and waited to see what would happen - no stress, no pressure - but obviously with my RA that is simply not an option for us anymore. Here in the real world, we're going to have to plan for pregnancy months in advance, and then we are going to have to "try" to get pregnant as quickly as possible to reduce the amount of time I have to go without the meds that keep my joints from becoming damaged and disfigured. This is never the way I pictured going about starting a family, but it's now my reality.

I also have to admit that from almost the very moment I got diagnosed with RA, my deepest, darkest, middle-of-the-night fear has always been that I can't trust my body anymore and that I won't be able to get pregnant.

So the more APL and I thought and talked about it, the more clear it became that the pressure of "trying," plus my anxiety over having a body I feel like I can't trust, was going to make for a really stressful situation in which to try to conceive. And then, if we couldn't conceive right away, there would be the added stress and pressure of failed attempts. And then the longer it took us to conceive, the worse state I would be in from having been of my RA meds for so long, and the worse shape I would be in for "trying" (if you know what I mean). Any way we looked at it, it just felt like a horrible feedback cycle of increasing stress and anxiety, with success seeming unlikely.

So, after discussing all of the pros and cons we could possibly think of, we decided that we would get our best shot at a relatively "stress free" period of "trying" if we ride the wave of adrenaline and good, happy, positive feelings from the wedding and honeymoon. Since the wedding is only two months away, this means that I have already had to start the process of coming off my meds (particularly methotrexate, which stays in your system for a long time after you stop taking it and can cause really scary birth defects).

We both know that it's pretty risky to try coming off my meds before the wedding - because who knows how it will end up making me feel (though so far, so good, aside from quite a bit more hand pain than usual). But we have decided that it is the best strategy we have for dealing with my biggest RA/pregnancy fear - our best chance for a "normal" stress-free shot at starting our family. Probably not the best strategy for everyone trying to deal with RA and start a family at the same time, but it's the best one for us.

Trying to reduce the amount of stress and anxiety I feel about this process is, of course, the reason that I am not going to publish this post when I finish writing it. Announcing our intentions at this point would only put more stress on me and increase the anxiety I already feel about how my body will ultimately perform. And I don't want to feel any extra pressure or judgment on a decision that, ultimately, belongs to no one but me and APL.

I do fully intend to share these feelings on my blog - because I'm sure they would be useful to someone contemplating pregnancy with RA. But I can't say when I will do so. Not yet.

I'll just have to wait until I feel ready to be honest about this one. Only time will tell.

Our Thanksgiving

2011-11-27T16:21:00.006-07:00

We have so very much to be thankful for this year – including a surprise for you:

That’s right – I’m just about three months pregnant! We’re due in June and we couldn’t be more excited!

Obviously my RA has already made the path to parenthood a complicated one for us. Since most RA medications are not safe for use during pregnancy, and some cause serious birth defects and take many months to get out of your system, it was just after the Jingle Bell Walk last year that I started weaning off the medications that were controlling my RA. For almost a year now I have been dealing with various levels of untreated RA – a sacrifice I have been more than willing to make for the health of our baby, but one that has also been both physically and emotionally difficult for me.

I will continue to deal with untreated RA for the duration of my pregnancy. While many women are lucky enough to go into remission while they are pregnant, I’m not sure yet whether this will be the case for me as I’ve been dealing with extreme levels of fatigue lately (sounds like remission, if it happens, usually starts near the end of the fourth month - and I'm not quite there yet.) Either way, the RA will almost certainly be back in full force a few weeks after birth. And the length of time that I will be able to breastfeed will be almost entirely dependent on how much my RA flares after giving birth and how long I can withstand the pain before I need to restart my medications.

Unfortunately, when it comes to getting information about RA and pregnancy there seems to be very little positive, supportive, helpful information out there - at least in my experience. For example, if you Google “RA and pregnancy” here is some the discouraging stuff you will find within the first three minutes of looking:

Discouraging Headlines:

Discouraging Facts:

Deciding whether to have a baby is even more complicated if you have RA, because you must deal daily with physical pain and limitation.
Most RA drugs aren't safe during pregnancy - some stay in your system for a long time after you stop taking them, some can affect an unborn child from the very earliest days of pregnancy.
It's been proven that women with RA take longer to conceive - which could be because of low sex drive, inconsistent ovulation, fatigue, and pain.
Pregnancy does not provide relief from RA to all women, and some women show no improvement or suffer flares while expecting.
Even if you are lucky enough that your RA goes into remission during pregnancy, the improved symptoms do not continue after the pregnancy is over. RA often comes roaring back a week or two after childbirth.

Here's another discouraging fact that no one really seems to talk about: trying to conceive while simultaneously dealing with untreated RA is no easy task. And, though I am only thee months in, I can tell you with authority that pregnancy is hard, and RA makes it harder.

But I know that I am not alone. There are 1.3 million people in the United States with RA - and 70% of them are women. There are 300,000 children growing up with juvenile arthritis – and most of them are girls. Arthritis affects our lives and our futures – and our children’s futures.

Although there are a lot of great blogs about living with RA - many of them written by moms - I have found very few resources that discuss the complicated matter of getting pregnant and being pregnant while dealing with RA. Here are a few:

The book "Arthritis, pregnancy, and the path to parenthood" is a really great resource - written by an Australian woman who experienced RA and pregnancy herself - twice. She also interviewed a lot of women who provide great insight.
Curly Bones is a blog written by Christina, who is bravely sharing her experiences with IVF after growing up with juvenile arthritis.
I also discovered a post on Stephanie's Mommy Brain that talks about Stephanie's personal experience with Enbrel and each of her four pregnancies. There isn't too much other information on her blog about RA, but the comments on this one post are enough to make you feel less alone if you have arthritis and are considering pregnancy. Although the post was written in 2010, Stephanie told me that she still gets 5 to 10 visits a week from people searching for information on RA and pregnancy.

Since my first post in 2008, this blog has always been a very honest record of my experiences with RA. It has always been my hope that sharing my story will help other people in similar situations - or at least let them know that they are not alone. My pregnancy journey with RA is no different.

Although I had personal reasons for not sharing the story as it happened (which I will explain), I have actually written 22 secret blog posts since last March. These posts cover my pregnancy journey up to this point: from weaning off my RA meds, to trying to conceive, to searching for advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. I will post the first of these tomorrow with the hope that sharing my pregnancy journey help others know that they are not alone.

Thank You, Deodorant.

2011-11-08T12:07:00.000-07:00

Having RA (and the compromised immune system that goes with it) has made me extra-sensitive to abnormalities in my body. If I find an abnormality, the past 3 years of my life has me well trained to get it checked out by a professional asap.

The other day I was standing in front of the mirror, putting on deodorant, when I discovered a little lump in my right armpit. My primary care doctor took a look at it yesterday. This morning the radiologist did an ultrasound of the lump. The radiologist says that it is most likely that the lump is a benign neural tumor - a tumor on the nerve. He said he has seen several benign neural tumors in the same location over the past couple of years.

Is it possible that the lump could be something more scary? Unfortunately, it is. But the radiologist said he didn't think so, because the mass wasn't very dense. Also, apparently cancerous lumps tend to have a black shadow on the ultrasound and this lump had a white one. The other good news is that the lump is far enough down my armpit that he was able to confirm that it is not associated with my breast tissue - and my primary care doctor did a breast exam yesterday and found nothing to be worried about there.

The only way to be certain what the lump is made out of is to get a sample of it. However, since the lump is so small (less than 2cm) and since it isn't associated with any muscle tissue (which would make removal more difficult), the radiologist recommends just removing the whole thing while we're at it (which is what they would want to do if it is something scary anyways.)

The radiologist is going to talk to my primary care doctor and then they will put me in touch with a surgeon. I'm not thrilled about the thought of surgery, but I am grateful that the RA has made me sensitive enough to my health that I went and got it checked out. I am also grateful for deodorant - because if I hadn't seen the lump in the mirror I probably never would have found it.

Massage Envy Raises Nearly Half A Million Dollars for the Arthritis Foundation!

2011-11-03T13:31:00.000-06:00

Remember the Healing Hands for Arthritis fundraiser at Massage Envys across the country on World Arthritis Day? It turns out that event brought in nearly $500,000 - about half a million dollars! - for the Arthritis Foundation.

Thank you so much to Massage Envy for helping us raise money - and awareness! - to fight arthritis. I'm so glad I got to be a part of the event.

Renoir

2011-10-18T10:55:00.005-06:00

Did you know that Renoir apparently had the first well-documented case of RA in history? Apparently, though he suffered from severe joint deformation in his hands in his later years, he continued to paint by tying his paintbrush to his hand. Now that's determination for you!!

I learned about Renoir from an interesting article sent to me by my friend JG: 11 Famous People With Rheumatoid Arthritis. Though I have to admit that I have not heard of all of these people (and they are saying Lucille Ball may not have actually had RA) it is interesting to see the various accomplishments of people who have dealt with RA: artists, movie stars, Oscar winners, singers, heart surgeons...even a Nobel Peace Prize winner! They clearly didn't let their RA stop them - and neither should you!

UPDATE: My blog also publishes automatically to my page on the Arthritis Foundation RA Community. One of my readers there passed along this link, which is a film of Renior painting in his later years. In the film you can see how RA has severely disfigured his hands, but he still continued to paint up until the day he died. It is a little bit disturbing to see his disfigured hands, but you have to remember that in the late 1800s there were no meds at all to manage RA. And it is amazing to see him persevere despite the RA.

(Heard of any other good RA Factoids? Send them my way and I will post them!!)

Healing Hands for Arthritis

2011-10-13T13:59:00.001-06:00

Yesterday, I got a massage in support of the Arthritis Foundation. Best fundraiser ever! What a relaxing way to donate money to a good cause! We're still waiting to hear from the national office about exactly how much money was raised yesterday, but hopefully it was a really successful event.

At the request of my local Arthritis Foundation office, I arrived at my local Massage Envy a few hours early to thank the owners and talk to customers about how they were helping to raise funds for arthritis. The owner was really friendly and said he thought the event was going well. He took a few minutes to talk to me about arthritis, and I think he even learned a few things from speaking with me. For example, he seemed surprised to hear that kids get arthritis too! I'm really glad that I got a chance to speak with him, because I think our sponsors should definitely know what they are sponsoring!

When it came to talking to people waiting to get their massages, I have to admit that it turned out to be a lot more difficult than I expected it to be. For one thing, most people seemed to be in a personal relaxation zone, and I didn't want to be too annoying while they were trying to relax. But also, though I know the message of arthritis awareness well enough, this was the first time I had ever delivered it in person to complete (and possibly uninterested) strangers, and it turned out to be a little bit outside my comfort zone. But I challenged myself and pushed forward. And thankfully the Arthritis Foundation gave me some jar openers to hand out, which made it much easier to approach people!

Ultimately, most of the people I talked to yesterday had no idea that their massages would be benefiting the Arthritis Foundation - they were just there yesterday by coincidence. But everyone seemed pleased to hear about the fundraiser when I explained it, and one of the girls at the front desk assured me that some people had mentioned the fundraiser when booking their massages for yesterday. Most people accepted the jar opener I offered them, but didn't talk to me any further.

However, I did have about 5 or 6 good conversations yesterday. A few people either had arthritis themselves or knew someone who did, so they were especially pleased to hear about the fundraiser. But I think my favorite conversations turned out to be with people who didn't know anything about arthritis but were interested in finding out - including one guy who flat out told me that I was far too young to have arthritis. Since these folks were interested, it was actually fun to talk to them about the different kinds of arthritis and what the Arthritis Foundation does to help. I found myself talking so comfortably about my own RA to complete strangers that I surprised myself.

It was only a couple of hours chatting with people in a waiting room, but I'm quite proud of myself for the work I did yesterday. For one thing, there are now at least a couple more people in the world who understand that there are many forms of "arthritis" - and that kids and young adults can get arthritis too. I'm also proud of myself for taking a deep breath and stepping outside of my comfort zone to do something positive - it wasn't easy to take the first step, but I have to admit that it did get easier after that.

I'm glad to have made at least a little bit of difference on World Arthritis Day - because every little bit helps.

Today Is World Arthritis Day

2011-10-12T11:13:00.002-06:00

Today is World Arthritis Day!!

Please make it your goal to teach someone about arthritis today! Post about it in your Facebook status, email your friends, talk to your co-workers, mention it over dinner, tell the barista at Starbucks! Help spread awareness that arthritis affects 1 in 5 adults and 300,000 children. And that "arthritis" is more than just osteoarthritis.

And go get yourself a massage!!

Another Fun Fact

2011-10-11T11:56:00.000-06:00

Here's another fun fact! The Arthritis Foundation has just received conformation that they will get to ring the bell at the New York Stock Exchange to raise awareness for arthritis! For some reason, they are doing it the day after World Arthritis Day - on Thursday, October 13 - but it's still pretty cool. Way to go with the arthritis awareness New York!

Fun Fact

2011-10-10T12:04:00.001-06:00

Here's a fun fact! The Empire State Building will be lit up blue on Wednesday to honor the Arthritis Foundation and World Arthritis Day!

Secretary Sebelius Celebrates World Arthritis Day

2011-10-10T11:36:00.004-06:00

This morning on Facebook I saw a post from the Arthritis Foundation in my newsfeed announcing that Secretary of Health & Human Services Kathleen Sebelius had prepared a message in honor of World Arthritis Day - which is this coming Wednesday, October 12th. It's very exciting to think that maybe the letter writing campaign actually made a difference in getting her to think and speak about arthritis!!

However, I have to admit that I have mixed feelings about her message. Before I launch into them, perhaps you'd like to watch the video for yourself:

On the one hand, I am really, really happy to see arthritis getting attention at such a high level of federal government. If Secretary Sebelius speaks about arthritis, hopefully that means there is a chance President Obama will hear our concerns as well. And I truly believe that increasing awareness about arthritis is a necessary step in achieving funding for much-needed research as well as increasing understanding and awareness for people (and children) suffering from arthritis.

I understand that Secretary Sebelius has very limited time and that she deals with a massive number of health issues, so I am very grateful that she took the time to focus on arthritis. I also understand that awareness campaigns have limited resources and may, in fact, be more successful if you are able narrow the focus of the campaign.

However, as someone personally suffering from RA, an auto-immune version of arthritis, and as someone who works with JA kids, who also have auto-immune versions of arthritis, I find I am still struggling with the fact that "Arthritis Awareness" tends to focus only on OA.

I have said it before on this blog and I will say it again: I am not trying to downplay the seriousness of OA in any way. It is a very serious issue in this country and dealing with OA is completely necessary for overcoming a myriad of other health issues. OA affects 1 in 5 U.S. adults, a HUGE number of people, so I understand that it also has a greater likelihood of gaining much-needed grassroots support.

But there are a couple of reasons that it frustrates me when the word "arthritis" is used by someone who is really only talking about osteoarthritis. One is that if people associate the word "arthritis" only with osteoarthritis, it may increase awareness of OA but it seems to me this confusion decreases awareness about other forms of arthritis. And, especially for those of us dealing with arthritis at a young age, it can be particularly difficult to cope when people think of "arthritis" only as OA. This type of confusion about what the word "arthritis" really means is what leads people to say "but you're too young to have arthritis!" or "Oh, my grandmother has it too."

Secretary Sebelius' video focuses only on osteoarthritis, but she doesn't even use that word until almost halfway through. Prior to specifying that she is talking about OA, she uses the word "arthritis" in a confusing way when she says "the good news is that arthritis is not inevitable nor untreatable." But I'm not convinced that sentence is accurate for people (or children) dealing with auto-immune versions of arthritis. Yes, auto-immune arthritis can be "treated," but are the treatments really good enough to allow us to live our lives the way we want to? Good enough to qualify as "good news"? Or do we still need research into better treatments? And, perhaps more importantly, I personally feel that my RA was, in fact, inevitable. It's not my fault that I got arthritis and there wasn't anything I could have done to stop myself from getting it. And I'm sure parents of kids with arthritis would agree.

Though Secretary Sebelius does say that osteoarthritis is "the most common type of arthritis," which perhaps indicates that other types of arthritis do exist, she does not even make mention of any of the other types of arthritis. I realize that her time is limited, but what about the 1.3 million Americans with RA who account for nearly 1% of the nation's adult population? And what about the 300,000 children with arthritis? And what about all the Americans affected by the other 100+ forms of arthritis? Don't they deserve a mention when talking about World Arthritis Day? I think we do.

September 26th

2011-09-26T17:12:00.001-06:00

I wrote my very first post on this blog on September 26, 2008 - exactly three years ago today.

It's hard to believe that so much time has passed. I think that I have come a long way since I first started writing this blog three years ago - and there are 320 other posts that record all the ups and downs of my journey since then.

I certainly still have my struggles, I still have to take things one day at a time, and sometimes I feel like I still have a long, long way to go. But it is also really nice to take a look back and see how far I have come.

Life Crisis?

2011-09-17T12:16:00.005-06:00

I know the most recent posts on this blog have all been really upbeat and optimistic - and looking at them makes it really difficult to find a place to begin explaining how I have actually been feeling lately. So please bear with me.

It's been more than two months since I lost my fellowship, but I don't think I am any closer to answering the "what do I want to do with my life?" question than I was at the end of June. In fact, I feel like I am actually more confused about what I want. It feels like I am having a bit of a "life crisis" (though APL has quite emphatically announced that it is in no way a mid-life crisis, since I am only 28). Honestly, in past two months that I have been at home thinking and searching every day, the only absolute conclusion I have been able to come up with is this: I have no idea what I want to do with my life.

When I told APL about this conclusion, he very graciously welcomed me to the club! He said that, aside from knowing he wanted to be with me, he has never really known what he wants to do with his life. He smiled the smile I love so much and said we would figure it out together. And that actually sounds very good to me.

But even with APL's full support I still find myself...struggling. I really feel...lost. And, after two months of thinking about this topic pretty much every day, I think I have finally identified the reason why.

Three years ago, I knew exactly what I wanted to do with my life: I knew for a certainty that I wanted to get a job working on issues of climate change law and policy. I wanted to make a difference in the world. And I was on the right track to achieving this goal. I had graduated with honors from an Ivy League university and I had been accepted to a dual degree graduate program where I was doing extremely well studying environmental law and policy. I had no doubt in my mind that I would graduate and use my degrees to have a positive impact on the issue of climate change.

Then I got diagnosed with RA.

Now, please don't take this the wrong way - I know that I have RA, but it absolutely does not have me. My RA does not control my life. I am absolutely certain that I am still capable of achieving the goal of working on climate change law and policy. It's true that my RA might require me to take a slightly slower path to get there, but if I really want to achieve this goal I know that with enough determination I could do it. I don't think anyone should let their arthritis hold them back from their dreams.

But here's the problem: I can't say with a certainty anymore that working to address climate change is still my dream. I just can't seem to find my determination, and my drive and my passion for the topic seem to be missing. I still care very much about the environment, and I still think that addressing climate change is completely necessary, but I think having RA has changed my priorities somewhat. It has made me realize that I have to take care of myself before I can consider taking care of the world.

To a certain extent, I guess I do have an idea what I want to do with my life: I want to be happy and feel better. This is the only goal I can claim to have with complete certainty right now. But, since I haven't quite figured out exactly how to achieve this goal, I am having a lot of trouble finding the energy to consider trying to save the world. Which, of course, makes the prospect of deciding the next step for my career or looking for a new job particularly overwhelming - especially considering that my degrees and experience and training are all pointing me in a direction that I'm not sure I have the energy for anymore.

In the meantime I have really been enjoying the volunteer and advocacy work I have been doing for the Arthritis Foundation. Though it does take energy to work on these issues, I find that I am able to work on them, at least a little bit, even when I am not feeling that great. I think I am able to find energy for this work because it makes me feel really productive to help others and do something positive with my arthritis. I've found the experiences to be challenging, but extremely fulfilling,

Too bad the Arthritis Foundation isn't hiring in Denver!!

(In a totally unrelated note, the picture in this post is one my friend LK took when we hiked Mt. Elbert, and it is so pretty that it just makes me feel happy to look at it. Gotta use whatever little tricks you can!)

Dear President Obama, Please Talk About Arthritis

2011-09-15T15:19:00.001-06:00

When I was at the JA Workgroup meeting on Monday, there were three pediatric rheumatologists in attendance. Between them, they estimated that they diagnose 10-12 new children with arthritis every month. I don't know about you, but to me that seemed like a huge number of kids for only three doctors in one state! How can all those kids be expected to deal with pain and fatigue at such a young age, when I could barely manage it at age 25? And, to be honest, I still struggle with at age 28. It hardly seems fair.

So what can we do to help those kids? One thing we can do is ask President Obama to talk about arthritis. President Obama and Secretary of Health and Human Services Kathleen Sebelius have made prevention and wellness a major policy focus for the nation, which is really awesome. But, when they talk about chronic diseases, they often speak of heart disease, diabetes, and cancer - but fail to mention arthritis.

While I am not at all trying to downplay the seriousness of the other chronic conditions, it does seem unacceptable to me to leave out the nation's most common cause of disability. Arthritis affects 300,000 children and an estimated 50 million adults in America - which means that 1 in 5 American adults are dealing with some form of arthritis. Not to mention all the spouses, parents, siblings, friends, and other family members who are also affected by their loved one's arthritis. We need to ask President Obama to make arthritis a national priority because it affects so many millions of Americans.

The kids are asking:

And so am I. If you visit the Arthritis Foundation's Legislative Action Center, you can send a letter to President Obama and Secretary Sebelius in only a few minutes - the letter has already been written for you. However, I learned at Advocacy Training that your letter will be more likely to have an impact if you include your personal story (rather than using the form letter). So here is the letter that I sent:

Dear President Obama and Secretary Sebelius:

Just three years ago I was a healthy, active, 25-year-old dual degree graduate student, simultaneously pursuing a law degree and a masters in environmental policy at the University of Colorado. I had a plan: to graduate, to get a job working on climate change and energy policy, and to help change the world.

But then my world changed when I was diagnosed with rheumatoid arthritis (RA). I had to take time off from school to find a workable treatment. I had to reduce my workloads to deal with the pain and fatigue. I felt like I was too young to be dealing with such a disease, but since then I have learned that arthritis affects one in five American adults and 300,000 children.

I am pleased that you have dedicated time and resources to addressing the increasing burden of chronic diseases, like heart disease, cancer, and diabetes. However, I strongly believe that arthritis needs to be included in this list. Arthritis is the nation’s most common cause of disability and costs the U.S. economy $128 billion each year.

Arthritis also places a burden on millions and millions of individual Americans – including those suffering from arthritis and their loved ones. It has placed a burden on me, my husband, my family, and all of my friends. It has slowed my progress towards reaching my goals.

I still plan to reach my goals and help change the world – I may have arthritis, but it doesn’t have me! Only now I will need your help to reach my goals. I will need medications and therapies and research and support to help manage my arthritis. I will need people to be aware that children and young adults can get arthritis too.

I believe arthritis should be mentioned whenever publicly speaking about chronic disease prevention. Please, President Obama, talk about arthritis.

I decided to send an email and print and mail the letters. This may be a small effort on my part, but it is one tiny step towards changing the world - and that makes me feel good.

I hope you will take the time to speak out too - and please feel free to use any piece of my letter that might resonate with you! Please click here to send your own letter.

Healing Hands for Arthritis - October 12th

2011-09-14T16:53:00.002-06:00

Guess what? On October 12th - which is World Arthritis Day - you can support arthritis research by getting yourself a massage. This may be the very best fund raiser ever!

Book a massage (or facial) on October 12 at any Massage Envy location and $10 from your massage will be donated to the Arthritis Foundation. I've already booked a massage for myself and one for APL, and I encourage you to do the same! If its your first time at Massage Envy, you can even get an introductory massage for only $49.

And, when you get your massage on October 12th, check out the Murad skin care products and Wyndmere aromatherapy oils - because 10% of all retail sales will also go to the Arthritis Foundation that day too.

Take one for the team! Go get a massage!! And tell your friends to do the same!!

Or, if you need more proof that you should go get yourself a massage on October 12, check out this video:

Steer Clear of Rocky Ford Cantaloupe

2011-09-14T15:22:00.002-06:00

Remember the other day when I told you that the FDA had added warnings about the bacteria Legionella and Listeria to labels on TNF-blockers (Enbrel, Remicade, Humira)? Well here's a reason to be extra careful if you are taking TNF-blockers: it turns out that there is currently an outbreak of Listeria in Colorado.

According to the Center for Disease Control website, a total of 15 people have been infected in 4 states - 1 in Nebraska, 1 in Oklahoma, 2 in Texas, and 11 in Colorado. The CDC has linked this outbreak to cantaloupes marketed as coming from the Rocky Ford region of Colorado. So, if you've got a compromised immune system, it's probably a good idea to steer clear of the Rocky Ford cantaloupe! King Soopers, Safeway, and Whole Foods have already removed the cantaloupes from their stores in the region.

If you've already been eating cantaloupe and you get chills, fever, muscle aches, or neck pain in the next few months you should head to your doctor right away! And that concludes my public service announcement!

JA Workgroup

2011-09-13T11:21:00.031-06:00

After spending a week as a counselor at JA Camp and volunteering at JA Family Day, last night I drove down to Denver and officially joined the JA Workgroup, which is the Arthritis Foundation Committee that plans all the JA events for this region. The committee is made up of parents and doctors and a few adults who have arthritis themselves.

I have to admit that since the Arthritis Foundation headquarters are south of Denver and I live in Boulder (north of Denver) and I had to drive past the Broncos stadium on a game night and I have been feeling so exhausted lately, it wasn't a particularly nice drive to get down there for the meeting. However, I'm still really glad that I went. Since I spent JA Family Day hanging out with the kids, it was really interesting to hear about the event from the perspective of the parents. We also worked on planning the Halloween event - Arthritis Isn't Scary - and I'm really excited to be a part of it!

It's really nice to be a part of something so positive and to have the opportunity to work with a group of people who understand what life is like with arthritis. Also, to be honest, I still have a hard time imagining how these amazing kids manage to deal with arthritis at age 3 - when I could hardly handle it at age 25 - so if there's anything I can do to make the lives of these kids (and their parents!) any easier then I want to be involved!

My Friend The Slow Cooker

2011-09-12T12:50:00.000-06:00

Since I am still currently unemployed, APL and I have a pretty old fashioned relationship these days: husband brings home the bacon, wife cooks it for dinner. That's right - my main job these days is to make sure there's a healthy dinner waiting for my husband when he gets home from work (you know, aside from figuring out what I want to do with my life/career and looking for a new job...)

Unfortunately, for the past few weeks, I have also been dealing with what I can only describe as a really bad fatigue flare. Luckily, the nabumetone did help me manage the intense pain I was having in my hips, so these days my joints are all (more or less) behaving, but I have just been so very tired.

I've been resting a lot, but even after a few weeks of taking it easy I'm still having difficulty shaking this extreme exhaustion. Some days I wake up feeling reasonable but then crash by 4pm, which can make my only goal for the day - to have dinner ready when APL gets home from work - seem really overwhelming. Even more frustrating is the fact that I know I will feel better and have more energy if we eat healthy - if I run out of steam and we order a pizza I know that isn't going to help me deal with my fatigue the next day.

And that is where my friend the slow cooker comes in! Tonight, regardless of how I will be feeling after 4pm, I will have a delicious and healthy dinner waiting for APL when he gets home, and I was done preparing it before noon!! The slow cooker is a really big help on days when I feel ok in the morning but I'm not sure how I'll be feeling later on. It's quick and easy and healthy and delicious. And it makes enough to have healthy leftovers on hand for lunches and other tired dinner days. It's certainly a trick I will keep up my sleeve for when APL and I have kids.

If you need some inspiration to get your own slow cooker back out and give it a try, let me share with you one of our favorite slow cooker recipes - and what we are having for dinner tonight! The original recipe comes from Not Your Mother's Slow Cooker, but I have augmented it to make it even more healthy by using buffalo instead of beef and adding a few tricks from Deceptively Delicious.

I always make this recipe with ground buffalo - and if your grocery store carries it I highly recommend giving it a try. Compared to beef, buffalo contains 70-90% less fat, about 50% less cholesterol, and is higher in protein, iron, and all the omega and amino acids. I also think it tastes way better than ground turkey. However, you can always substitute lean ground beef or ground turkey if you prefer.

Also, Deceptively Delicious is another great trick to have up your sleeve for healthy meals with less effort. The premise of this cookbook is to always have steamed and pureed vegetables in your freezer to add to meals - a couple hours of preparation gives you quick access to extra nutrition. For example, I never make pasta anymore without adding a few cups of spinach and brocolli puree to the store-bought sauce. And though the cookbook is aimed at cooking for kids we've found it works great for adults too!

Mariah's Buffalo Joes!!
Serves 4

Ingredients
1 pound ground buffalo
1 onion, finely chopped
1 large red bell pepper, seeded and finely chopped
1 large rib celery, finely chopped
1 clove garlic, minced
1 can tomato paste (6 oz)
2 tablespoons cider vinegar (or more as needed)
2 tablespoons firmly packed light or dark brown sugar (or more as needed)
1 teaspoon paprika
1/2 teaspoon dry mustard
3/4 teaspoon salt
1/2 teaspoon chili powder (to taste)
1/4 teaspoon black pepper (to taste)
1 teaspoon Worchestershire sauce
Dash of hot sauce (such as Tabasco)
2 cups steamed, pureed carrots (see Deceptively Delicious)
1 cup steamed, pureed cauliflower (see Deceptively Delicious)

Instructions
1. In a large skillet, cook the buffalo with the onion, bell pepper, celery, and garlic, stirring to break up the meat.
2. When the meat is cooked through, transfer everything to the slow cooker.
3. Add the remaining ingredients and mix well.
4. Cover and cook on LOW for 6 to 7 hours.
5. Serve on whole wheat hamburger buns!!

New Biologic Side Effects Warning

2011-09-09T12:45:00.000-06:00

I just learned from Nessie at lipstick, purfume, and too many pills that a new warning has been issued by the FDA concerning TNF-blockers (tumer necrosis factor-alpha blockers) - such as Remicade, Enbrel, and Humira. The warning being added to the labels of these medications states that people who take TNF-blockers may be at risk of infection from the bacteria Legionella and Listeria. Here is an article about the FDA announcement in Arthritis Today.

Now, I have no idea what those bacteria are or exactly what it is that they do. And this new information certainly won't stop me from taking my weekly Enbrel injection - because choosing to use a drug that suppresses my immune system has always been a trade off between risks and benefits.

However, especially as the flu season approaches, I do think the FDA announcement serves as a good reminder that my immune system is suppressed, and that if I am not feeling well I should brave the nurses (who sometimes give me a look like I am a crazy hypochondriac) and make certain that I don't have an infection that could become dangerous. It's also a good reminder to be as careful as possible in exposing myself to people who may already be sick.

In any event, since it was a good reminder for me (thanks, Nessie!) I thought I would pass it along here. It's especially worth considering this reminder because most of us aren't just on TNF-blockers - most of us are also on methotrexate and/or prednisone, which can also suppress the immune system.

Guess it's almost time to get my lysol supersoaker locked and loaded again!

Find Me on Facebook!

2011-09-07T13:02:00.002-06:00

I have decided to give this blog a Facebook page!

The primary purpose of having a Facebook page for my blog is to make it easier for you to follow. If you "like" my blog on Facebook, you will get links to my blog updates in your newsfeed.

The Facebook page is also another way that you can contact me if you have questions about RA or just need someone to talk to who understands! I'm hoping it can also be a small forum where people living with arthritis can connect with each other.

You can find the page by following the links in this post (to http://www.facebook.com/FromThisPoint.Forward) or by clicking on the "Find me on Facebook" badge in the right-hand column of this blog.

Arthritis Foundation Advocacy Training

2011-09-07T12:13:00.000-06:00

Last night APL and I drove down to Denver to attend an advocacy training session at the Arthritis Foundation. We weren't really sure what to expect, but we wanted to learn about the options so that we can try to do something positive with my RA.

It was a really interesting evening. A current Arthritis Ambassador and recent Arthritis Advocacy Summit participant told us about her experiences advocating for the Arthritis Foundation. A Senior Congressional Aide gave us advice about how to talk to our congressional representatives. And the Grassroots Advocacy Coordinator of the Arthritis Foundation explained the importance of grassroots advocacy in obtaining funding for arthritis research and encouraged us to participate.

APL signed up to be an E-Advocate, which I have already been doing. If you are reading this blog you obviously care about arthritis, and so I highly encourage you to sign up to be an E-Advocate as well!! It means that you will receive Action Alert emails when important arthritis-related issues are debated on Capitol Hill. The Arthritis Foundation will then provide you with a letter that you can send to your elected officials to tell them that, as one of their constituents, you care about arthritis and its impacts - though it is much more effective if you can edit the letter to include a few sentences of your own personal story. Either way it takes only five minutes of your time and it helps secure funding for much-needed arthritis research. Please consider clicking here to sign up to be an E-Advocate for the Arthritis Foundation!!

Since I have managed to move forward from writing about my arthritis to talking about it on video, I decided it was time to get over my phone phobia and do something even more positive with my RA. So I signed up to be an Arthritis Ambassador!! This means that I have committed 2 hours each month to advocating for the Arthritis Foundation. Every other month, one hour will be spent on a webinar with other Ambassadors from around the country. At that point, I will receive an assignment - such as writing or (take a deep breath!) calling my Representative's Health Legislative Assistant or attending a local town hall meeting to ask important questions, tell my story, and let my representatives know that I care about arthritis. If I am lucky, I may also get a chance to attend the annual Arthritis Advocacy Summit in Washington, DC.

I am both nervous and excited to see where this will lead me, and I hope it will allow me to make a positive impact on the lives of people living with arthritis.

My First 14er!

2011-09-05T10:59:00.004-06:00

This weekend - with the help of APL, my best friend LK, and, of course, River - I made it to the top of my first 14er!!

For those of you who don't live in Colorado - where the word "14er" (fourteener) is pretty much part of the everyday lexicon - a 14er is a mountain who's summit exceeds 14,000 feet in altitude. There are 547 14ers in the world, and 54 of them are in Colorado. Hiking 14ers is a big deal here in Colorado - people try to collect them all.

To be fair, my first (and probably only) 14er was Mount Evans. This means that, thanks to the highest paved road in North America, we were able to drive up to 14,130 feet. Then we hiked about half a mile of switchbacks up to the summit, which measures 14,258 feet (making it #13 in height out of the 54 14ers in Colorado).

I realize that hiking only half a mile and gaining only 128 feet of elevation may not sound like that much of an accomplishment. But, at 14,000+ feet above sea level, any sort of exertion can be difficult, particularly since we drove most of the way so we had less time to adjust to the altitude.

This was also way higher than I had ever been before - my previous high was probably the Alpine Visitor Center in Rocky Mountain National Park, which is at about 12,000 feet. But I've also had trouble with altitude - headaches, nausea, etc. - at as low as 10,000 feet. So I wasn't sure how I would fare at 14,000+ feet.

But, by going slow and stopping often to rest, I made it to the top! And, silly an accomplishment as it may seem considering I only hiked half a mile to get there, I am super proud of myself!

P.S. The picture, in case you can't tell, is all of our feet around the USGS geologic marker at the top of Mount Evans! It proves we were there!

WEGO Health TV

2011-08-29T09:07:00.041-06:00

WEGO Health TV works to create videos containing advice and information from bloggers and other online community leaders about various health issues. Recently they contacted me and requested that I contribute to their new Rheumatoid Arthritis channel. So I did!

I have to admit, especially considering how easy it has become for me to write honestly about my RA on this blog, I was surprised at how difficult I found it to talk about my RA in front of a camera. But I think it is good to challenge yourself once and a while, and now I have been featured in two videos on their RA channel.

I was going to embed the videos in this post, but I didn't like the way they played automatically (rather than giving you the option to press play). So, if you'd like to see the videos, please use the following links:

(1) School and Work with RA

(2) Staying Active with Rheumatoid Arthritis

Jacuzzi!!

2011-08-29T08:40:00.002-06:00

This RA Factoid is brought to you by my friend RK!

Apparently, the word "Jacuzzi" started out as the last name of a family of Italian immigrants, who were originally aircraft manufacturers. But the seven brothers decided to switch to making whirlpool-treatment hot tubs in 1948. Their inspiration for creating such a soothing and therapeutic wonder? One of their sons suffered from RA! So every time you find relief in a jacuzzi, you can thank the Jacuzzi brothers for their quest to help those of us with RA!

The source: There Once Was a Man Named Leotard: People Who Became Nouns

(Heard of any other good RA Factoids? Send them my way and I will post them!!)

Please Consider Signing this Petition!!!

2011-08-17T09:44:00.001-06:00

Please consider signing this petition!!

Public investment in biomedical research could improve the lives of millions of Americans forced to live daily with arthritis - including nearly 300,000 amazing kids and ME!!

And, if you are reading this blog, biomedical research could probably improve your life or the life of someone you love. So please consider signing! And tell your friends!

Nabumetone

2011-08-16T11:14:00.003-06:00

After literally taking all the anti-inflammatories in the house over the last few weeks (and we shop at Costco, so this was not a small number of pills), I finally gave in and went to see my rheumatologist yesterday about the massive and seemingly everlasting hip pain I've been dealing with lately.

He gave me a prescription anti-inflammatory that I had never heard of: nabumetone. They are like horse pills - I swear that picture is the actual size of the pills. In any event, I am really hoping that they work to manage some of this hip pain, because the next step is a short dose of prednisone. And we all know how I feel about prednisone.

Here's to hoping my hip pain is on its way out (and that prednisone will not be necessary)!

JA Family Day

2011-08-16T11:04:00.001-06:00

On Saturday, APL and I went down to Denver to volunteer at the Arthritis Foundation's JA Family Day. For us, it was a little bit like a mini day of being at JA Camp - and while we had fun with the kids the parents got to attend seminars to learn about their kids' arthritis. I was also super excited to get to see some of the same kids from camp again.

We got to do crafts, play games, and go swimming with the kids. After lunch we hit rocket-shaped pinatas and then the kids got into teams and made their own rockets out of 2-liter soda bottles. When the parents were done with their seminars, everyone watched while the rockets blasted off into the air.

APL and I both had a lot of fun hanging out with the kids - the kids are all so wonderful and full of life. I especially loved watching APL interact with the kids, particularly with an adorable 4-year-old little boy who took a liking to APL while we were in the pool. And I was really glad to be able to help a 5-year-old girl, who was scared to be without her mom, forget all about her mom while having a ton of fun in the pool.

But I will admit that in some ways JA Family Day was more heart-wrenching for me than camp. Even though I knew that a lot of the kids at camp had been diagnosed with arthritis at a really young age, this was the first time I had ever interacted with really little kids who were already dealing with arthritis. The youngest child at JA Family Day was about to turn 3, and her dad told me that she had been diagnosed with arthritis just as she was learning how to walk. She was still so young, and full of smiles and happiness, so it was really hard to imagine her dealing with the pain of arthritis at an even younger age. And I can't even image what her parents must have gone through.

It seems so incredibly unfair that these amazing kids - and their parents and siblings - should have to deal with arthritis at such a young age. And it is hard to accept that they will have to deal with arthritis for the rest of their lives. I know there isn't anything I can do to take the arthritis away, but I am really glad that there is anything at all that APL and I can do to help these kids and their families - even if it is something so small. Especially since we had so much fun doing it!

Josh Sundquist

2011-08-11T12:12:00.001-06:00

As long as we're on the subject of inspirational people, a friend just sent me a hilariously uplifting video. Josh Sundquist lost his leg to cancer at age 9, but he isn't letting it stop him from pursuing his dreams. I thought it might make you smile too:

Jeffrey Gottfurcht

2011-08-09T16:05:00.003-06:00

On May 14, 2011, Jeffery Gottfurcht became the first person with RA to climb Mt. Everest!! Diagnosed with RA 10 years ago, at the age of 28, he decided not to let RA take this life goal away from him. He has also done amazing things for arthritis awareness, including starting a foundation to help children with arthritis live their own dreams: the Jeffrey Gottfurcht Children's Arthritis Foundation.

Considering the complaining I've been doing about my hips lately, his accomplishment is hard for me to even fathom. I mean, we're talking about Mt. Everest here. But he did it. And I find myself inspired.

Just yesterday I was talking with a friend about whether I would ever be able to hike Half Dome again - a hike APL and I have each done separately that we have talked about wanting to do together someday. The hike takes you to the top of one of the most famous images in Yosemite National Park, which APL and I share as one of our favorite places on earth and is only a few miles from where we got married. But since my diagnosis I have had my doubts about my ability to hike 16 miles with about 5,000 feet of elevation gain - not to mention the cables you have to use to actually climb up the back of the dome. I've been wondering if I could ever have the hand strength, leg strength, and stamina to do it.

But if Jeffrey Gottfurcht can hike Mt. Everest with RA, surely a little planning and preparation could enable me to hike Half Dome if I really wanted to. Maybe Half Dome is my Everest - and maybe someday I'll get to accomplish that goal too.

(Heard of any other good RA Factoids? Send them my way and I will post them!!)

Excruciating

2011-08-08T18:17:00.000-06:00

My hip pain has been excruciating lately. It doesn't seem to matter what position I am in or what temperature I am. I've been eating anti-inflammatory pills like candy to no avail. Even vicodin doesn't even seem to take the edge off.

I have no idea what to do next.

These Kids Are Awesome

2011-07-29T12:07:00.000-06:00

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.

2011-07-29T09:32:00.003-06:00

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

2011-07-28T13:18:00.000-06:00

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!

2011-07-26T14:46:00.007-06:00

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?

2011-07-12T15:12:00.002-06:00

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

2011-06-28T13:43:00.000-06:00

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

2011-06-28T13:01:00.006-06:00

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

2011-06-28T11:53:00.002-06:00

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)

2011-06-24T15:54:00.000-06:00

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!!!

2011-06-24T15:18:00.009-06:00

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!!

P.S. If you want to see a few more wedding pictures, visit our photographer's blog!

UPDATE: More than one person has commented that they had trouble with the above link to our photographer's blog. Here is the direct link if you want to try copy and paste: http://patrickpike.com/2011/05/austin-and-mariah---backyard-wedding-in-groveland.html

And, in case that doesn't work and you are for some reason dying to see pictures from our wedding, you can use this link to see my Facebook Album of pictures taken by our friends and family. ~;o)

Third RA Anniversary

2011-06-24T14:41:00.001-06:00

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!!

The May 2011 Denver Arthritis Walk

2011-05-16T09:53:00.000-06:00

Yesterday APL, River and I walked in the May 2011 Denver Arthritis Walk. It was rain-snowing when we left the house, but luckily by the time we got down to Denver it was only gray and not even very cold. But, maybe because of the bad weather threatening, there weren't nearly as many people at this walk as there were at the Jingle Bell Walk in December. So, I have to admit, the atmosphere wasn't nearly as exciting as it was in December - though River seemed equally excited!

I did manage to just reach my goal of having more people on Team Z at this walk than at the last walk. At the Jingle Bell Walk we had nine people (and three dogs) and at this walk we had eleven people (and the same three dogs!) So I am excited that I was able to achieve that. Unfortunately I don't have a full team picture - only a partial one. So for this post I chose a picture of APL and me in my blue arthritis hero hat. My knees were really bothering me yesterday, so I'm really glad I had APL's hand to hold to finish the walk.

Thanks to everyone who came out to the walk to support the Arthritis Foundation!

Cheered Me Right Up!!

2011-05-15T08:46:00.002-06:00

We woke up this morning and it's rain-snowing, so not the most delightful day for the Denver Arthritis Walk. But guess what? It doesn't really matter if it's raining or snowing - I still have RA, so we're going!!

But as we were bundling up, I'm really glad that I got to see these pictures from the Arthritis Walk in Baltimore, MD yesterday. The pictures are of APL's brother AML (his best man) and his awesome girlfriend MK. Their team was called "Walking for Mariah Because She's Walking Down the Aisle."

Cheered me right up! ~;o)

Thanks so much guys - you have no idea how much I needed that support right now. It means so much to me.