10 Practical Tips to Tackle Rheumatoid Arthritis Joint Pain

In this article I share 10 helpful and practical strategies to try when you need to get your RA joint pain under control as quickly as possible!

Read more at New Life Outlook RA!

Does Sexism Exist in Healthcare?

Scientific studies have actually proved that there is a definite gender bias when it comes to how pain is treated.

Read more at RheumatoidArthritis.net.

Beyond Pain Scales: 6 Ways to Communicate Pain

In my latest guest post for Mango Health, I consider some ideas to productively make use of the dreaded 1-10 pain scale!

Check it out here!

Downright Hard

Because I am pregnant right now, my RA is currently completely untreated. And while I was lucky enough to experience at least some remission during my first pregnancy, I just haven't been that lucky this time around. 

My RA has definately been flaring. And while my usual flares are more of an overall body ache or sometimes a relatively dull, persistent pain in a particular joint, my pregnancy flares have turned out to be different. I have been experiencing excruciating joint pain that comes on without any warning and with barely any reason. This pain will last for a day or two and then disappear almost as quickly as it arrived. So far it has been my right hip, my right knee, my left toes, my left hip, my left shoulder, and then my right knee again. The problem is that the joint hurts so much for a couple of days that it almost incapacitates me, especially since there is basically nothing I can take or do to help with the pain that is safe for the baby.

For example, last night I read a book for about ten minutes before going to bed. Half an hour later, my right wrist was in in such severe pain that I could barely sleep. From what? From holding a book open for ten minutes? Apparently. I put a wrist brace on and tried to go to sleep. I ended up taking some Tylenol in the middle of the night. But I just couldn't get comfortable and my wrist hurt so much I barely slept at all.

This morning it felt like my wrist was in even more pain. So when OZL decided he didn't want to get dressed, I knew I was in trouble. I pointed to my wrist and tried to explain to him that mama had an owie. He listened very intently and said "mama has owie." But he is not even two yet, so he forgot all about mama's owie as soon as I tried to dress him. He ended up flailing around and screaming, and I had no choice but to physically fight him into his clothes. But the end of the ordeal we were both sobbing.

Luckily it is a school day for OZL, so all I really had to do was get him dressed and get him to school. But, to be perfectly honest, I'm not sure what I am going to do with the rest of my day at this point. I'm supposed to be writing today, but even typing this short post is pretty slow and painful because of my wrist. 

I guess the moral of the story is this: while my kids are completely worth it and I love having them more than anything, sometimes being a mama with RA is just downright hard.

(P.S. The book I was reading for 10 minutes last night was a baby name book - which only leads me to wonder how I will ever survive on days like this when I am outnumbered!!)

A Random Act of Kindness

I have been having a rough time lately. I’ve been trying to ignore it and deny it for weeks, but unfortunately I don’t think it can be denied any longer: my RA is officially flaring. During pregnancy.

Fingers. Wrists. Elbows. Shoulders. Neck. Hips. Knees. Ankles. Toes. All are swollen and stiff and painful to move or touch or use. I have also been waking up with the most intense morning stiffness I have ever experienced - it feels like I have been run over with a steamroller in the night. And the fatigue is beyond soul crushing.

I have to admit that I am scared. I’m scared because there aren't very many pregnancy-safe options to help me deal with all this pain. I’m scared because I am barely halfway through this pregnancy and I’m honestly not sure how I will survive the second half. But I am also terrified that once I do manage to make it to the end of this pregnancy I am going to be in no fit shape to take care of two little boys.

This morning was particularly rough. It took a massive amount of resolve to haul my steamroller-crushed body out of bed, and then OZL woke up and screamed for more than 30 minutes straight and there was nothing I could do to console him. (I think he might be working on his two-year molars...gah the timing!). And, despite being well into my second trimester, I am still dealing with intense morning sickness and soon found myself gagging over the kitchen sink yet again (after which OZL announced "bless you, mommy!" so at least he is a polite little grump!). After surviving all this I looked at the clock. It was not even 8:30 a.m.

Unsure how we were going to survive through the day, I loaded OZL into the car. I figured I would drive through Starbucks and get myself a latte to help me feel more human - and then I would see about finding some trucks or construction to distract my grumpy toddler. So I ordered my latte, but when I pulled up to the window to pay the barista informed me that the person in the car in front of me had already payed for my order.

I honestly do not know how to thank that person enough. Living through this difficult pregnancy and dealing with this arthritis flare at the same time has left me feeling so very, very alone. Although this person was a stranger who knew nothing about me, somehow this random act of kindness made me feel a little less isolated. I drove to the closest construction site and enjoyed my treat while OZL and I watched the heavy equipment roll by. And it was absolutely the best both of us have felt in a while - which gave me hope for getting through the day.

That person will never know just how much they did for me today, but hopefully someday I will be able to pay it forward to someone else.

How Do You Dress A Tornado?

I really can't believe it, but OZL will be 11 months old in only 8 more days!! One year ago today I was 8 months pregnant, dealing with RA flares, and being tested for preeclampsia, which I eventually was diagnosed with resulting in bed rest. As soon as I hit 37 weeks, OZL was born via C-section. And, via some insane time warp, he will be turning one next month!!!

These days, OZL is interested in everything. He crawls in all directions at about the speed of light and pulls himself up on anything he can reach, reguardless of whether or not it will actually support his weight (case in point: he pulled a folding chair over on himself in music class this morning.) Most of the time he is speedy and full of energy and a very happy baby. Though he has also spent a fair amount of time over the past week or so being a big old grumpyface since the poor little dude has 5 teeth coming in at the same time.

Getting him dressed in the morning is like trying to dress a tornado. He flips and squirms and wiggles tries to crawl away while my clumsy RA hands fight to snap those tiny snaps and button the little buttons and pull itty bitty socks onto itty bitty feet. If it would only stop snowing I'd just put a clean diaper on him and call it a day! (Welcome to spring in Colorado - we've had more snow in the past few weeks than we got all winter.)

Honestly I have been struggling to keep up with him lately, especially since PT doesn't really seem to be helping. Both my knee and foot and all the muscles around them have been hurting a lot, and my knee has been doing this weird cracking/popping thing. The kneecap hasn't dislocated again (thankfully) but it doesn't feel like it's getting any more stable either. I'm wondering if surgery is imminent - and if it is how on earth I will ever keep up with OZL then?

I do have a college student who comes twice a week to watch OZL so I can have a couple of hours to get my writing done, but lately I've had to use most of her time to go to PT rather than work. So I'm using all of OZL's nap times to do my writing for Answers.com. I'm getting the work done, but I have almost no time to myself to rest or relax these days.

Hopefully I'll find a way to get a break soon!

PT and/or Surgery

I saw the orthopedist on Friday about my foot and my knee. There's good news and there's bad news.

The good news is that she isn't worried about my foot. It's bruised as a peach but it will heal. I'm supposed to wear the very sexy shoe you see in the photo for the next few weeks to help it heal, and I should try to stay off it when it hurts too much, but other than that it will be fine.

Surprise, surprise: the bad news is my knee. According to the orthopedist, the ligament that is supposed to hold your kneecap in place was likely destroyed the very first time my knee went pop. And apparently there's nothing we can do to get it back. So instead we're going to try some PT to strengthen the other muscles in my leg. This is supposed to encourage the kneecap to stay in place, but there's no guarantee it will keep my kneecap from dislocating again. Unfortunately, any additional dislocations could damage my knee and might lead to osteoarthritis (the last thing I need). So, if PT doesn't help and/or my kneecap keeps dislocating itself I may need to consider knee surgery.

In the meantime I'm just hobbling around with OZL (thankfully with the help of my mom right now!) and trying to stay positive. 

Happy New Year

Happy New Year, everyone! I hope your year is off to a really great start!

Unfortunately, we've been off to a bit of a rough start around here. OZL somehow got a little cough (is there anything more heart wrenching than a baby coughing miserably?) Then he got a fever while he was fighting off the cough (oh yeah, a feverish coughing baby is a whole lot more heart wrenching). So the first two days of the new year have found us with one sad, sick baby.

I've also hit that familiar wall of fatigue - where it seems like it takes an immense effort to do anything. Which, of course, makes caring for a sad, sick baby slightly more difficult. And for some reason my toes have also chosen this time to get so swollen and painful that it hurts to walk or stand. Awesome. I see my rheumatologist again on Friday to talk about whether the most recent trial treatment for my "fibromyalgia like symptoms" is helping. Honestly? I'm not so sure it is.

Luckily, APL had yesterday off and was able to work from home today to help me out. I'm really grateful he has a little flexibility at work. So we're hunkered down and hanging in there, waiting for OZL and me to feel better.

"Fibromyalgia Like Symptoms"

When you're a new mom, people tend to ask how you are doing a lot. More often, in fact, than they ever did when I got diagnosed with RA in the first place. The thing is, I feel like they're not really asking about me - they're actually asking about the baby. Is he sleeping? Eating? Thriving? Starting to sit up? Threatening to crawl? Is he a happy baby? And it is super easy for me to answer all of those questions by saying: yes! We're doing great! Because we are! OZL is doing awesome. He's happy, healthy, growing like a weed, almost sitting up on his own, starting to roll as a mode of transportation, starting to eat some solid foods, smiling, laughing, cooing, cuddling, loving... he's amazing and it makes me so very happy to be with him. 

But how am I doing? Because my life right now revolves so completely around taking care of OZL it has honestly been a bit difficult to separate out how I have been feeling lately. If he's doing great I feel like we're doing great. And swept up in busy days caring for OZL on my own, it actually took me a few weeks to realize that I haven't been feeling so hot.

I've been back on Enbrel for about two months now. I am certainly feeling better on it than I was off it. But it turns out I'm still not doing that awesome. It doesn't seem to be any particular joint or joints bothering me - instead I've been dealing with a lot of overall stiffness and soreness. I've been having a lot of trouble getting comfortable at night so I haven't been able to sleep through the night in weeks (even though OZL does!). Sometimes I am so sore in the morning that it's difficult for me to care for OZL on my own. I've also been having major cramping and aching in my feet, which makes it painful to walk. Which, of course, is not helping my quest to get some exercise. After quite a few nights in a row with very little sleep (where my tossing and turning also kept APL awake) I finally decided it was time to pay a visit to my rheumatologist.

He was not surprised to see me. He said it's not unusual to see symptoms get worse after the adrenaline of the first few months of motherhood wears off. Though he did agree that the pain/stiffness I have been dealing with lately is not how my RA usually presents (I usually have specific joints that are giving me trouble). He called what is happening now "fibromyalgia like symptoms." Instead of giving me something that would reduce my immune response more than the Enbrel already is, he suggested an anti-depressant used to treat fibromyalgia. In addition to treating depression, apparently this group of anti-depressants is also used to treat non-specific pain. I figured it was worth a try. And I really hope it works because I don't want to waste any time focusing on feeling crummy - I just want to enjoy this time with OZL!

The Hard Truth

Early Tuesday morning, OZL wanted to nurse at about 3:00am. Twenty minutes later he was full and contentedly back to sleep. I knew that I needed to get back to sleep too, because I had to get up early for a rheumatologist appointment. But, yet again, I couldn't fall back to sleep. I tried laying still and paying attention to my breathing. I tried reading for a little while. I went downstairs and cuddled on the couch with River. I tried going back to bed. But it was no use.

By 6:00am I was still awake but totally exhausted. And, as APL was getting ready for work, I started crying like a little girl about how much I didn't want to go to see my rheumatologist. Because I already knew exactly what he was going to tell me. And I just didn't want it to be true.  

But it is true. My rheumatologist confirmed that my joints are getting worse (in fact my pilates instructor gently told me the same thing on Monday). And, unfortunately, we're pretty much out of breastfeeding-safe medication options. (While RA medications that are safe for breastfeeding do exist - i.e. I think plaquenil may be one of them - my rheumatologist says they would take 3 to 6 months to have any effect, and, considering the severity of my RA, are unlikely to work for me anyhow.) 

So what am I to do about breastfeeding? My options are basically stick it out or give it up (though luckily my rheumatologist did not put it quite so bluntly).

For now I'm opting to stick it out, which means staying on the prednisone. I had been taking the full 10mg of prednisone in the morning in an attempt to keep it from messing with my sleep, but clearly that isn't working anyhow. So my rheumatologist recommended taking 5mg in the morning and 5mg at night to put me on a more constant dose, instead of a peak-and-valley dose. So I'm going to try that. And, as backup, the only other real option for me is to increase the dose of prednisone. Of course, that would only make my sleeping issues worse. Not to mention making it even more difficult for me to lose weight, which is already extremely difficult since my joints hurt too much for me to do any serious amount of exercise.

If things don't go downhill any faster, my rheumatologist actually thought it might be reasonable for me to try to stick to breastfeeding until OZL is five or six months - which I think would be a pretty amazing accomplishment. But, when I'm honest with myself, another three months with no additional medication seems pretty daunting at the rate things have been declining.

For the time being I'm just going to try to stick it out another three weeks through my trip to California. From September 9th to 16th, APL will be riding his bike from San Francisco to Los Anglels in the California Coast Classic - a total of 525 miles - to help raise money and awareness for the Arthritis Foundation. (Check out his website to learn more about the ride - and also see more cute pictures of OZL!) OZL and I will be spending the week in Los Angeles with my dad and APL's parents so that we can all be at the finish line. Seeing as breastfeeding is currently going well, I think traveling with an infant will be easier if I can just, ahem, whip out the boob any time OZL is hungry (or crying on the airplane!)

And after that? We'll just have to wait and see. But the hard truth is that it might be time to give it up.

Waving for World Arthritis Day!

Now that OZL and I are starting to get into more of a routine, I'm starting to get back to blogging and my arthritis awareness and advocacy work - at least a little bit! And OZL has been helping me out. 

For starters, here's the picture that we submitted to the World Arthritis Day waving campaign! The campaign is trying to collect photos of 100,000 people waving by World Arthritis Day, which is October 12th. Waving may be a small physical activity, but it's a big gesture of support for people with rheumatic and musculoskeletal diseases. So if you haven't submitted a photo yet, you should upload one here! It's really easy to do. And there aren't very many photos at all submitted from the United States - so we should change that!

OZL has now actually been in two photos for the campaign, because on Thursday we went down to the Denver Arthritis Foundation office for the volunteer appreciation lunch and he was in the photo with all the volunteers. It was really nice to see my friends at the Arthritis Foundation - and we're looking forward to seeing them again at JA Family Day in a couple of weeks. I'm also looking forward to a chance to see some of the kids that I missed since I didn't get to go to camp this year.

In the meantime, things are going pretty well around here. OZL is 10 weeks old now and doesn't cry as much as he used to and sleeps much better. Breastfeeding is going awesome and I'm continuing to pump and stock up as much breastmilk as I can in the freezer. And OZL smiles now, and (allow me to gush like only a mother can) his smile lights up the whole room.

My RA is...okay. Despite the prednisone I always have a lot of trouble with my hands and feet in the mornings. The first diaper change after APL leaves for work is a tricky one - and sometimes I don't bother putting any clothes on him in the mornings to avoid all those tiny snaps. My ankles have also been really tight, so getting down the stairs to get myself breakfast, especially while carrying OZL, has also been a challenge. But the good news is that the major soreness usually wears off after I have been up for a few hours. So, for the time being, we're hanging in there!!

Healthline's 22 Best Rheumatoid Arthritis Blogs of 2012

Yesterday I had a pretty rough morning. I woke up feeling extremely achy. My hands were so sore I had difficulty picking OZL up and moving him into position to nurse (but thank goodness for the My Brest Friend nursing pillow so I didn't have as much trouble holding him in place once I got him there!) Once we finished nursing, my feet were so cramped and my ankles were so tight I could barely walk down the hall to change him. And all of this happened before we even made it down the stairs to get me some breakfast. So, all in all, not the greatest start to any day - particularly a Monday, when I couldn't stop thinking about how it was going to be a long week with APL at work and not home to help me during the day.

But then I got an email that cheered me up immensely! (Some of you may have already seen this news on my Facebook page yesterday. I was excited and OZL was not napping, so a Facebook post was a lot quicker than a blog post!) I learned that this blog had been selected by Healthline as one of the 22 Best Rheumatoid Arthritis Blogs of 2012! I was very pleased with their review, especially because I am truly hoping that this blog can be a resource for women with RA who are planning to face pregnancy and motherhood. Not that I'm an expert on either of those things, of course, but mostly so that we can find each other and know that we are not alone!

I'm also excited to check out the other RA blogs mentioned in the article. A few of them I already knew about, but there were quite a few I hadn't heard of before - including some written by moms with RA! So totally worth checking out!!

And this concludes my blog post for today, because OZL is screaming from his swing. I swear I will get back to posting more regularly once we figure out our routine a bit better! 

Oh, and for the record, I'm feeling much better today!

Raptor-Baby

Tomorrow OZL will be 8 weeks old! And so far the extra prednisone actually seems to be helping. My hands and feet are still giving me trouble, but not too much trouble  - so we're hanging in there with the breastfeeding for now. And my baby boy is fat and happy! Well, always fat. Mostly happy. ~:o)

And, for your listening entertainment, I present to you this: the sounds my child makes while totally asleep. It's like I gave birth to a raptor-baby or something...

Seven Weeks

I have to admit that I am sort of reluctant to write this post. I really don't want to discourage anyone out there with RA from following their dream to become a mother. But, personally, on my own journey I have been desperate to find honest stories about the realities of birth and motherhood with RA. I wanted to know what to expect so that I could prepare myself. But I found very few real stories, and so it has been scary to approach this post-birth period with almost no idea what to expect. So I'm sharing my story in the hopes that it will help - and hopefully, in the end, encourage - other women with RA who want to become mothers.

Today is OZL's seven week birthday. And, unfortunately, it's official: my RA is getting worse.

My feet (toes, ankles) and hands (fingers, thumbs, wrists) hurt a little bit more every day. The pain in my hands is particularly problematic - it's getting harder (and more painful) to pick up OZL, to wash pump parts, to carry the car seat, to snap those tiny snaps that are all over everything he wears...

I have to admit that it is really frustrating to have the RA return at what is already a really stressful and exhausting time. And I'm not superwoman - sometimes I have to sit down and cry about how unfair the whole situation seems. But, for the most part, I am trying to keep my spirits up and do the best I can to stay active and enjoy my time with OZL. This morning we even took a little hike (the picture on this post!)

Even though I'm hurting, I'm not quite ready to give up on breastfeeding just yet. So I emailed my rheumatologist, and with the blessing of my pediatrician we decided that it is time to increase my dosage of prednisone. Anyone who reads this blog regularly knows how I feel about prednisone - I hate the stuff. And I am bummed to have to take it because it will make it much harder for me to lose the baby weight (and will actually probably make me gain more). But, besides handfuls of advil, it is pretty much the only option I have for medication that is safe while breastfeeding. So I really hope it helps.

For now I still plan to fight to continue breastfeeding, but I'm also trying to come to terms with the need to stop, because the end is in sight at this point. I keep repeating to myself, over and over again, a comment that one of my readers left on my last post:

To your son you are more important than your milk.

I know this is true. I really don't want to have to stop breastfeeding before either of us is emotionally ready to do so, but if the RA keeps getting worse I really won't have a choice. I will have to go back on my meds in order to be the mother that I want to be. And, as I keep telling myself, there is absolutely nothing wrong with that.

Six Weeks Later

I know, I know...long time no blog! But around here we've been really busy! We've been nursing. And changing diapers. And nursing again. And bouncing and rocking and swinging. And nursing some more. And taking a bath in the sink. And pumping breast milk. And nursing still more in the middle of the night (seriously - this kid is hungry!) And when I've had a little bit of time to spare I've mostly used it for laundry or showering or feeding myself and APL or, occasionally, sleeping!! So though I've been thinking about all the things I might like to say in a blog post for a while now, it has been quite hard to find the time to actually sit down and type it. In fact, it's taken me two separate days to finish this post!

OZL is now six weeks old and he's doing really great. He is growing so very fast! He was 6 pounds 5 ounces when we left the hospital and today he weighed in at 10 pounds 15 ounces! He still eats, on average, every 2 to 3 hours around the clock. Occasionally we'll get a 4 hours stretch, and that is always nice. We once got a 5 hours stretch two nights in a row and APL and I thought we were in heaven! So much uninterrupted sleep for us! Because, if you haven't guessed, OZL's schedule has made it quite difficult for me and APL to get sufficient sleep. And sometimes that can be really hard. I mean, I'm obviously no stranger to fatigue, but sleep deprivation like this is a whole other kind of tired entirely. Sometimes I get exhausted to the point where I am no longer even coherent and I just sit down and start crying. Some nights are much harder than others (which makes some days a lot harder than others) but we're hanging in there and doing the very best we can.

Since we know how important it is for me to stay as healthy as possible right now (after all, I'm the milk factory!) APL has been working hard to make sure I get as much sleep as I can. He'll take the baby in the evenings so I can go to bed earlier. He'll stay up with me in the middle of the night if I need help. He'll give OZL a bottle of pumped breast milk in the mornings so I can have slightly more uninterrupted sleep. So APL has been super amazing - such a wonderful dad and husband. We are also extremely lucky to have my mom staying with us right now. She has been a totally invaluable source of support - especially in the food department, since she cooks an amazing meal almost every night (when, let's not lie, APL and I undoubtedly would have been too exhausted and just made a frozen pizza).

So I suppose I ought to get to the point that everybody who reads this blog is probably wondering about: my RA. I guess I have to report that there's good news and there's not so good news on this front.

The good news is that, with the exception of the extreme exhaustion cryierd kind of days, which still happen every once in a while, I have actually been feeling pretty good lately. My incision has completely healed and doesn't hurt at all anymore. And I have a decent amount of energy, especially considering how little sleep I have been getting. I just had my six week checkup this morning and I've been cleared to exercise - and I'm happy to find that I'm actually excited to get moving!

Then there's the not so good news. It hasn't really reached the point of being bad news, per se, but there's certainly nothing good about it. I am definately starting to experience some joint pain. It started in my left toes maybe three or four weeks after the birth. It isn't a huge amount of pain in my toes - mostly it's just annoying - but it has been a little bit unnerving because that is where my RA originally started. And then, just in the past week or so, I have started experiencing pain in my hands. I've been waking up with sore and slightly swollen finger joints, and I've had to break out the wrist guard for my right wrist. To be fair, I have been doing a lot with my hands/wrist lately - lifting and carrying the baby, moving the heavy car seat in and out of the car, changing diapers, washing bottles and pump parts, snapping tiny snaps on clothing. But, unfortunately, I don't think this really explains away all the pain I've been having in my hands. So, while I'm really trying to stay positive that my RA symptoms will remain minor for the foreseeable future, I can't help but wonder how quickly the rest of my joints might follow. And the whole thing is worrisome because I really, really want to breastfeed as long as possible - and I won't be able to anymore if I have to go back on my RA meds.

Looking for guidance or support on this issue is almost entirely unproductive. Mostly you end up with extremely vague statements about the potential for a post-birth flare (i.e. not at all useful!) Like this gem from WebMD: "Women with RA tend to flare within months after giving birth." Or this study, which says women frequently experience "disease exacerbation after delivery." They don't say when to expect it or how bad it will be. Or what the hell you ought to do about it!! I know that is because everyone's RA is different, so there's really no way to tell what will happen to any particular person, but I can't even seem to find much anecdotal evidence of individual stories. And, though I'm honestly trying not to think too much about it, sometimes I can't help wondering how much longer I have before my body turns on me again. The uncertainty can be pretty frustrating.

In the meantime, I'm trying my best to enjoy the more or less pain-free time that I have been granted. And I am pumping. As much as I can. I'm trying to get as much breast milk stored in my freezer as possible. That way, if my RA flares and I end up with no choice but to go back on my meds, I will know that I have done everything in my power to give OZL as much breast milk as I can possibly provide, so that he gets the most healthy start he possibly can. And I'm still hoping/wishing/praying that I won't have to deal with that issue any time soon.

Bed Rest

If you're having a busy day at work or a rough day at school, I'm sure bed rest must sound pretty awesome. You probably imagine luxuriating in bed all day, eating bon-bons, watching movies, having people bring you food or give you a foot massage. But let me assure you of this: bed rest is really not very much fun. Especially with arthritis.

I have been laying in bed, getting up only to use the bathroom, since I got checked into the hospital on Friday afternoon. So it has only been a few days but all the immobility has already been totally killer on my joints. They pretty much all hurt - which obviously doesn't make laying around all the time very easy or very fun. And, since my OBs want me to primarily lay on my side to increase bloodflow and reduce my blood pressure, my hips are objecting loudly and constantly. Yesterday afternoon I had to resort to some vicodin just to keep laying in the bed. 

Luckily, APL is taking extremely good care of me. He set up my computer next to the guest bed with a trillion movies and TV shows. He also got permission to work half days from home, so he brings me lunch and makes me dinner every day, and having him home limits my need to go up and down the stairs. River is also being extremely good company. She seems to know something is wrong and spends a lot of time laying on the bed with me. She cheers me up immensely. Our friends are also helping out - one brought us a pot roast for dinner on Monday, another took River on a hike yesterday, a third is texting me daily from California to make sure I'm hanging in there. We're very lucky to have such a good support system. 

It still isn't easy. My body hurts a great deal and today I feel like I'm having trouble being entertained by anything, even though I have a million options. I'm really hoping to make it another week on bed rest to give our little guy a bit more time to cook. While of course I want what is best for my baby that is also an overwhelming thought because the joint pain and stiffness seems to increase daily. It's hard to lay around and rest when it hurts to lay there.

But I'm trying to take it a day at a time - an hour at a time if necessary. And, luckily for me, APL will be home soon. And that always makes me feel better.

The 2011 Jingle Bell 5K Run/Walk for Arthritis

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.

Bubble Wrap

Well, I really hate to admit it, but I think it's official: something is not right with my joints and the medicine doesn't seem to be helping.  I just did an Enbrel injection yesterday, but I don't feel any better today. Actually, I feel worse.

::sigh:: 

In particular, my toes, ankles, elbows, and knees have been aching a lot. Oh, also my wrists and fingers. And shoulders. And hips. (Do I have any joints left that don't ache? Hmmm...knock on wood)

None of these joints are particularly swollen, which seems a little weird to me, but they all hurt. My knees are also hot to the touch most of the time. And my joints have also been cracking whenever I move. When I walk downstairs, it sounds like the stairs are covered in bubble wrap - which is a pretty hilarious thought until you actually think about it.

I also spent all day on Friday, laying on the couch feeling...icky. I can't really think of a better way to describe it. I just felt gross all over. In every, single way. I couldn't really get up or accomplish anything. Even watching TV felt like a little too much effort. I thought I might have had a fever. I believe this is the delightful feeling that doctors term "malaise." APL calls it "feeling like balls." Excuse the language, but at least it makes me smile.

I also did something this morning that I generally try to keep myself from doing, especially when I'm feeling unwell: googling RA. Through the magic of the interwebs, you can convince yourself you have any disease or syndrome in the world if you google it enough. Particularly since there are so many blogs and websites offering health advice - generally with all the best intentions in the world but without medical degrees. 

This blog, of course, is not intended for use as a source of health advice. This blog is nothing more than a record of my personal experiences after being diagnosed with RA two years ago and my own, personal thoughts about my RA experience. I hope it comes through in my writing that these are my experiences, and I recognize that others with RA will undoubtedly have different ones.

But if I can offer some advice?  If you have RA (or any illness, for that matter) don't google it. Particularly on a day when you're already feeling icky (or dealing with "malaise" or "feeling like balls.") I promise google won't make you feel better.

Productively Unproductive

I am writing this post under the shade of an enormous oak tree on the back patio in Groveland. I don’t have any internet here (which honestly is probably a good thing in terms of relaxing, to be disconnected) so I will post this next time I have internet. The sun is shining, a soft breeze is blowing, and I’ve been walking through the tall grass and thinking (or at least trying to think and, rather unfortunately, trying to walk). I decided I wanted to write this post now. This blog has become an outlet for me, and sometimes I just get in the mood to write!

This time the desire to write probably has something to do with me feeling a bit useless right now. Everyone else is working on projects. APL’s mom is mowing the tall grass that has grown in the orchards so that she can access all her baby fruit trees to take care of them. APL’s father and APL’s brother and his brother’s girlfriend are literally starting to build the barn – the final part of the foundation was just poured yesterday and they are starting to build the frame as I type this.

Even APL, though he is not here right now, is being productive. He flew back to Boulder yesterday to do a contract job today and start his brand new job on Monday. He is being so responsible and paying all the bills and taking care of me even when we’re apart. And everyone here is taking care of me too, because at least some of the motivation behind the work they are doing now is to get the Groveland property ready for our wedding next May. Which is probably part of the reason I feel so frustrated that I am sitting on the back porch, drinking a soda in the shade, and not helping at all.

But, in a way, I guess I’m working on my own project: resting. I know it sounds silly, but resting is actually a challenge for me. Especially when I want to help. It always seems like there should be something I could do to help. However, the other problem is that I’m not very good at limiting myself. Ok, ok. I’m really bad at limiting myself. In fact, last time I was here in Groveland I worked myself way too hard and my body really paid for it afterwards. I even knew at the time that I was working too hard and I still couldn’t stop myself. So this time I’m simply not working at all. I’ve helped clear the table and washed the dishes a few times, but other than that my project is resting. Sitting still. Giving my poor body a break.

Unfortunately, it isn’t yet having the desired result. To be perfectly honest, I’m actually feeling worse right now physically than I was during finals or during the semester. I think it’s probably because I had adrenaline and anxiety to keep me going during finals and, for that matter, over the course of the semester. But now I’ve completely crashed. Literally every joint in my body aches. My toes. Ankles. Hips. Shoulders. Wrists. Fingers. Elbows. Knees especially. And every muscle connected to those joints is sore, which is pretty much every muscle. And I’ve got a headache and no energy whatsoever. 

But I’m trying to be patient with my body. I know I did a lot of damage to it over the semester. And over the last two years for that matter. I haven’t exactly been taking it easy since I got diagnosed with RA, seeing as I’ve also been in law school and law school takes a toll on healthy people!! I know it will take me some time to recover to “feeling good” and I’ve got to try to be patient. But it really isn’t easy.

For now I’m just trying to enjoy relaxing, in this moment, regardless of how my body feels. I’m sitting under a beautiful tree, with a beautiful blue sky, in this beautiful place. I’ve got a view of the barn site (so I can see all the action!) and River is sleeping in the shade behind my chair. And I am surrounded by my soon-to-be family members who all love me and are all helping take care of me. Really they are already my family.

My body may have some issues, but I am actually very lucky.

Dead Wood

During the week of spring break, APL and I had a few days of downtime on "the farm," where we helped APL's mom with the farm-work. APL shoveled turkey poo manure into the back of the gator (the utility vehicle, like an off-road golf cart) and then distributed it to each of the trees in the orchard. I spent literally two days clearing dead wood from the oak grove where we hope to have our wedding ceremony, dragging big pieces into a pile to be saved for winter firewood and using the gator the haul smaller or rotten pieces close enough to chuck on to the burn pile. Clearing the dead wood will not only help us create a gorgeous ceremony location but also protects the grove from the significant fire risk in the area every summer. 

I have to admit that it was a pretty physically difficult job - bending down to gather dead sticks, carrying them over uneven ground to the gator, chucking wood on the burn pile, lugging half-rotten logs out of the weeds that had grown around them. But it was so satisfying to be doing something physically active and outside in the sunshine. It also gave my mind a two day break from the hundred million worries I've been worrying about. And, if I loved that oak grove before, I love it even more after toiling under those trees for two days straight.

However, that being said, I totally crossed the threshold that leads to RA crashing. This is something I still majorly struggle with. Not only do I have a hard time identifying the threshold, but even if I am able to identify it I have an even harder time making myself listen to it if I'd rather not.

I worked under the oak trees, hauling dead wood, all afternoon on Tuesday. By the time we stopped for dinner it was all I could do to eat something before falling into bed. I was exhausted and sore too. But the problem didn't really start until I woke up the next morning actually feeling good. I was still tired, yes, and a little bit sore, but what else is new? I figured if I could work a whole afternoon and feel like that the next morning, I could certainly work a bit more.

But I didn't work a "bit" more. I worked a lot more. I worked pretty much all day. About halfway through the day, I already knew I had done too much, but I didn't stop. Part of it was that APL and his mom were still working, and I really wanted to contribute. But most of it was that I liked the work I was doing. I liked contributing to the place where our wedding will be and I liked the way it freed my mind to just be outside in the sunshine, rather than worrying about assignments and doctor's appointments. I should have stopped, but I didn't. I kept working late into the afternoon. It was like I knew the crash was coming, but it hadn't come yet so I might as well enjoy what good feeling I had left.

But I paid for it. Really paid for it. The next day, I felt like I was going to die. Every joint and every muscle in my body was on fire. My head throbbed and I felt nauseous and dizzy all day. My body was heavier and felt more rotten than any of the wood I had hauled to the burn pile. It took a tremendous amount of effort just to stay upright and behave like a normal human being. I don't think I've ever crashed that hard before. It took several days to come out of that nosedive.

The problem is, though the crash was horrendous and probably pretty unhealthy for me, I'm not sure I regret the two days I spent working in the oak grove. I want to be able to do physical work sometimes. But I do recognize that I should figure out how to limit myself a bit more in the future - to do some work, enough to be satisfying, but not enough to knock me down so hard. However, I think this is easier said than done. And I guess it will be a process of trial and error.