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!

Product Review: Nimble

I received a sample of Nimble for free, but I was not compensated for this post. All thoughts and opinions are my own. As stated in my product review policy, my reviews will always be 100% honest. 

I was recently contacted to see if I would be interested in reviewing a new product called Nimble.* Nimble is a thimble-like device that you can use to cut open plastic or paper packaging with the simple swipe of one finger. It sounded like an interesting product, especially since I know from experience that getting into packages can be a real struggle when you are dealing with hand pain. 

I wondered how difficult it would be to use - i.e. how much pressure would you need to apply to make it work? What if my pointer finger was in too much pain - would it work on another finger? It's always a balancing act figuring out how to use tools with painful hands. But I thought that even if Nimble required concentrated effort from a particular finger, it might still be easier than awkwardly using scissors or a knife to open a package. 

When my Nimble arrived I was pleased that it fit comfortably on whichever finger I wanted to use. The little ceramic "blade" is tiny - you can even run your finger over it without getting cut. And the amount of pressure needed to cut through packaging is very minimal. My only piece of constructive criticism is that it wasn't immediately intuitive to me whether there was a "right" or "wrong" way to face the blade for use - but it was easy enough to figure out after playing around with it for a little bit. 

The developers of Nimble have launched a Kickstarter campaign to fund the second launch of Nimble. If you aren't familiar with how Kickstarter works, you pledge a certain amount in return for the product - but you only get charged if the campaign meets its goal. Once the campaign closes you will get your product, though it may take a bit of time as the funds you pledge go to creating the product. 

If you are interested in checking out Nimble's Kickstarter campaign you can do so here!

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!

48-Hours In The Life of a #ChronicMom

For those of you who are not on Twitter, I've decided to include my #ChronicMom tweets here so you can take a peek into 48 hours in the life of a mom with a chronic illness!!

February 3, 2015:

6:43PM: Whatever happens tomorrow please don't let my honesty discourage you. Being a #ChronicMom IS hard but also awesome!

February 4, 2015:

6:25AM: Baby crying & I hurt too much to even move. Hubby changes him & brings him to snuggle. Mornings can be hard. Baby smiles help.

6:37AM: Hubby walks our dog before work so the poor love can get some exercise. It's too much for me most days. And today it's snowing.

7:03AM: 2yo's up. His cough is worse. Sweetly asks me to carry him downstairs. I somehow manage his 30lb. Then go back up for 20lb 6mo.

7:10AM: Feeding sick 2yo = more challenge than usual. I put protein powder in his sippy so I don't end up with a hangry toddler.

7:19AM: 2yo barfed all over couch. I'm cleaning him, cleaning couch. Haven't eaten anything so no pain meds yet. Going to be a long day.

7:40AM: Baby crying. I gobble a granola bar while heating his bottle so I can take a pain pill. Prescription almost gone = problem.

7:47AM: 2yo who just barfed milk now crying since I won't give him more milk. Heaven help me it's not even 9am.

8:00AM: Trying to put baby down for a nap. 2yo comes up to scream for milk. Now they're both screaming. I'm the one who needs a nap!!

8:12AM: Baby asleep. 2yo watching Daniel Tiger. I finally get to eat some breakfast and email my rheumy for pain med refill.

8:28AM: "When something seems bad, turn it around, and find something good!" Thanks for the reminder Daniel Tiger!!

8:39AM: Crockpot = THE BEST. Prep meals when up for it, grab from freezer when not. It's a rough morning but dinner will be ready! 

8:48AM: Changing a poopy diaper with sore hands/wrists/fingers can be really challenging - especially with a wiggler!

8:58AM: iPad for 2yo + crinkle book for 6mo = shower for mama! Hot water helps my pain & being lean makes me feel more human

9:04AM: Between managing my health & raising 2 babies I literally can't remember the last time I had a haircut. Into a ponytail again!

9:25AM: Granny is here!! Reinforcements! I am so so lucky that my mom lives nearby!

9:43AM: Baby is rolling all around the floor & trying to crawl. Soon I'll have 2 on the go and then I'll really be in trouble!

10:09AM: I decide the barfing resulted from cough meds on empty stomach. I give in to incessant whining and give 2yo milk. Pray for me!

10:21AM: Pancakes = great for hiding nutrients: kale/chard, protein powder, coconut oil. I make a big batch to heat up all week.

10:25AM: Put lid on bottle to mix formula. Can't get it off again. Baby screaming. Yay for jar openers!

10:37AM: Good news: dr approved refill. Bad news: new law requires me to pickup & hand deliver paper script. I have 2 kids. It's snowing.

10:58AM: Sometimes I think 75% of motherhood is laundry. Hurts my hands to move the wet and fold the dry, but it's gotta get done!

11:05AM: 2yo has a fever. I take immunosuppressants. How to care for him without exposing my compromised immune system? It's no easy task.

11:08AM: Four loads of laundry to fold and my hands are killing me. Time to try some prescription anti inflammatory meds.

11:29AM: Both kids are miraculously napping at the same time!! I'm getting off my feet for a bit!

12:24AM: Baby's up. He chews a teether and coos while I eat my lunch of vegetable soup. It makes me happy. ~;o)

1:21PM: Hate needing pain meds just to function. After pharmacy battle I hope the Orencia actually arrives today - and I hope it works.

2:44PM: 2yo up from nap. 100 buckles later everyone is loaded in the car to run errands. Exhausted & we haven't left the house yet.

3:25PM: Drive 10+ miles to drs office. Load up double stroller. Haul kids thru snow to pick up a piece of paper.

3:55PM: I love bulk cooking! Made 6 meatloafs Sun & just took one to a mom w/ a 9 day old baby. All mamas deserve support!!

4:40PM: Drove to pharmacy. People are getting off work and parking is crowded. I use my handicap placard. It always makes me feel guilty.

4:42PM: Load up double stroller. Haul kids thru snow to hand-deliver paper. 30 mins. I'll have to come back tomorrow. This system sucks.

4:57PM: Finally home. Dinner smells awesome. Don't think I could survive without my crockpot. 

5:01PM: The Orencia arrived! Took Enbrel yesterday so I can't start until next week but at least I have it now!!

5:03PM: 2yo: What's in the box mommy?

Me: Mommy's medicine

2yo: You have a lot of medicine

Me: Yeah, buddy, I sure do

6:18PM: Dinner done. Kitchen clean. Hubby makes me an Epsom salt bath and I get a gloriious 30 min to myself! 

6:58PM: After my solo soak my sons get in the tub with me. Bubbles and giggles, splashes and smiles. often my favorite part of the day! 

7:14PM: Every day when I give my baby his last bottle I miss breastfeeding him. But without RA meds I wouldn't even be able to hold him. 

7:31PM: Hubby rubbing icy hot on my leg to try to relieve the intense pain in my left ankle. He's the best.

February 5, 2015:

6:22AM: One benefit of not breastfeeding: hubby can do 3am feedings so I can take meds to help me sleep through the pain.

6:30AM: 6mo weighs 21lb. He's so smiley in the mornings - but lifting him hurts so much I want to cry. I hope the new meds help soon

6:56AM: Woke with a headache. Usually means (TMI) I'm getting my period. Because what I really need is a few more reasons to feel yucky!

7:19AM: First baby didn't crawl till he was 11mo. Second baby looks determined to do it today!! I think I'm in trouble!

7:37AM: Had to cancel regular playdate due to 2yo's cough/fever. Now face w/ figuring out how to entertain them all morning on my own.

7:46AM: Things I want my sons to learn from having a mom with RA: http://rheumatoidarthritis.net/living/things-i-want-my-sons-to-learn/

9:56AM: Baby napping. Sick 2yo watching excessive amounts of Daniel Tiger. Mommy working but hands hurt so typing/mousing is hard

12:09PM: 2yo napping. Baby up. It's like whack-a-mole around here. Everyone gets a nap but me!!

12:31PM: Granny comes to watch the boys so I can swim. I don't feel like going (pain/headache) but I know how lucky I am so I go anyways

1:18PM: I swim 30 laps & tread water for 5min. Nothing like my water polo days (when I LIVED in the pool) but it's something!

1:29PM: Feeling spoiled to pick up my pain meds w/out my double stroller entourage. Only took 3 trips & 2 days to get my refill haha

2:11PM: Problem w/ exercise: now I'm exhausted & on my own w/ two kids until hubby gets home. Deep breaths (& likely more Daniel Tiger)

2:23PM: No matter what kind of mom you are, you will at some point find yourself literally up to your elbows in poop.

2:51PM: Babywearing: a useful took for calming a fussy baby with less strain on your hands/wrists

2:53PM: At least he stopped crying! 

3:38PM: Nutrition trick: green cubes! Steam, puree, and freeze chard/kale/greens. 30min work = easy nutrition!

3:39PM: I add green cubes to EVERYTHING! Sauces, soups, ground meat, pancakes, muffins...nutrients for my whole family!

4:37PM: 2yo makes Lego tower. 6mo spits up on it. Mommy pries it apart to clean nooks & crannies w/ sore fingers ::sigh::

5:25PM: Made delicious taco salad for dinner. Sadly it doesn't go too well with jaw pain.

6:40PM: Getting the kiddos to bed so I can take part in a conference call with Seth's 50 State Network http://www.ghlf.org/seths-50-state-network/

8:05PM: Share your story!! You might be able to influence healthcare legislation! (COSenate passed SB71 today!)

8:09PM: If you are a #ChronicMom (or want to become one) reach out to us!! It's a hard job but you don't have to do it alone! Thanks for following!

Time To Wean

I swear it feels like just yesterday that CZL was born, but little CZL isn't quite so little anymore! He weighs more than 14 lbs and he is almost three months old! CZL is a beautiful, happy little baby and his big brother OZL completely adores him. We are a very happy little family!

But, unfortunately (but not unexpectedly) I am not doing so well. Despite the fact that I am currently taking Enbrel and prednisone, my RA is flaring. Badly. And I am struggling every day with extreme fatigue (being up for CZL in the middle of the night is not helping) and terrible pain, especially in my hands and wrists (which makes literally everything baby-related painful to accomplish). Just like last time, I know it's time. It's time to wean.

But that doesn't really make it any easier.

I have so many mixed emotions right now that I'm not really even sure where to start. First of all, I guess I have to admit to being somewhat surprised over just how emotional I feel about weaning the second time around. I have grieved over a lot of things that RA has taken away from me - my active lifestyle, my career aspirations, the ability to hop out of bed in the morning feeling great...and breastfeeding. I really thought I had already grieved over losing breastfeeding when I weaned OZL. But somehow I find myself grieving all over again. Especially since this has been an incredibly easy nursing experience - CZL has a great latch, I didn't deal with any cracked or bleeding nipples this time, and my milk supply has been fantastic. But even though I absolutely knew this day was coming - and I know from my own experience how much more there is to motherhood after breastfeeding - I still find myself feeling unimaginably sad about weaning CZL.

And I'm honestly struggling a little bit with the fact that this may be the last time I ever breastfeed a baby. We knew that we wanted OZL to have a sibling, so even though I was sad to wean OZL I knew that I would have another chance someday. This time I'm not so sure. I always thought I wanted three kids, but I'm not sure how realistic that is for us. This past pregnancy was extremely difficult for me, and I'm honestly not sure whether I would be able to survive another one. We aren't making that decision anytime soon - I'm going to get my RA fully treated and then we will wait a few years and see how we feel - but it is possible that CZL could be my last baby. And that does make weaning just a little bit harder.

I also have to admit to feeling a little bit disappointed. I stopped nursing OZL so that I could start taking Enbrel again, but with CZL I was forced to start back on Enbrel during my third trimester. So, since he was already exposed to the medication (and the information on safety is better than it was two years ago) I made the decision to stay on Enbrel while nursing CZL. So I think, in the back of my mind, I thought I might actually be able to nurse CZL a little longer than I made it last time since my RA would theoretically be better treated. But, in reality, I think my body is just worn out from dealing with RA that has not been fully treated for four years. Despite being on more meds than I was last time, I am actually struggling just to make it to the three month mark. And that is a bit disappointing.

And then there's some complicated emotions that, although they have to do with stopping breastfeeding, actually have nothing to do with my baby. Like I mentioned above, it has been four years since my RA has been completely treated. I stopped taking methotrexate six months before APL and I got married so that we could start trying for a baby right away. It took us four months to conceive and then I was off Enbrel for a year while I was pregnant and nursing OZL for three months. Then, because we knew we wanted our kids to be close in age, I never went back on the methotrexate at all due to the amount of time it takes to start working + the amount of time it takes to get out of your system. It just wasn't worth it to go back on between kids. And while the Enbrel does help it has never been enough all by itself to control my RA. So, to reduce the overall amount of time I would spend with partially treated RA, we started trying for our second as soon as OZL turned one. But this time it took us 8 months to conceive. And then I was off Enbrel again until my third trimester. And though I am back on the Enbrel now, I'm still having a hard time. Because, all together, it has been four years that I have been living with untreated or partially treated RA. And I think my body is just completely worn out.

But once I am finished nursing CZL, I will have the whole wide world of RA medications available to me. My body will be my own once again and I can do whatever it takes to get me feeling as good as possible. And I am honestly excited about the possibility of feeling better than I have felt in a long, long time. Most of me believes that I will be feeling lots better soon, and I'm excited to have extra energy to be a better mom to my boys.

But there's also a part of me that's a little bit scared.

It feels a bit like going back to square one. When I was first diagnosed, it took a long time to figure out what my "new normal" was going to look like - and even longer for me to accept that "normal" and learn to be happy again. And I have to admit that I am a bit nervous to "rediscover" my normal, if that makes any sense. Because, for the past four years, the fact that my RA has been partially treated has been sort of a handy excuse to keep my spirits up when I wasn't feeling well. I knew things were crummy but I could always say to myself "don't worry! Things will be better when my RA is fully treated! I'm doing this for the good of the family!"

But...what if things are not better? What if the treatment doesn't work like it used to? What if I am still in a lot of pain or dealing with large amounts of fatigue - despite being able to take all the meds? And now I also have two little kids to raise? What if things aren't going to get better? I am trying to stay positive and take things one day at a time - the way I always try to keep looking forward. But I have to admit that, at least sometimes, forward seems a little bit scary.

The RA Pregnancy Chronicles: Sometimes Being Pregnant With Arthritis Is Hard

The RA Pregnancy Chronicles is a series of posts that share my experiences being pregnant while living with RA. This post was written during Week 23 of my second pregnancy. 

Unfortunately I don’t think it can be denied any longer: my RA is officially flaring. I'm also waking up with the most extreme morning stiffness I have ever experienced – it feels like I have been run over with a steamroller. And the fatigue (combined from the RA flare, difficult pregnancy, and chasing a toddler) is beyond soul crushing.

Read more at RheumatoidArthritis.net.

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.

The RA "F" Word

I knew on Saturday. We were in the car when I felt a small twinge of pain in the joint on my right thumb. Though I didn't want it to be true, somehow I knew immediately that it wasn't an isolated, random pain. 

And, unfortunately, I was right. By the end of that evening both joints in that thumb hurt. By the next day the left thumb hurt too. Then the other joints on both my hands became inflamed. And now the pain has begun to travel into my wrists. It's the RA "F" Word: a flare.

It was in March when I got prednisone injections in both of my hands to keep my RA at bay. At the time my rheumatologist told me the relief from the injections would last two to three months, so I guess I ought to feel lucky that I made it four. 

Now I suppose there's nothing left to do but wait a few more days so that I can determine whether this flare is contained to my hands or whether other parts of my body will be affected as well. Then I guess I will make an appointment with my rheumatolgist and decide what to do next. Because I need to stay as pain-free and functional as possible - not only for my sake but also for my sweet baby boy.

Knuckle Injections

Today is not my favorite day.

OZL is cutting a tooth. I can finally feel it poking through his top gums. So he is drooling all over the place and is not a particularly happy camper.

On top of that, my hands have really been killing me for the past couple of weeks. It has been getting quite difficult to take care of OZL without a fair amount of pain. It hurts to put bottles together. It hurts to take them apart. Buckling him into the carseat or stroller is difficult and painful. And snapping all those tiny snaps makes me want to jump out a window. Though I have to admit I fumble almost as much with getting zippers started. But maybe the worst part is that OZL is starting to pull himself up and wants nothing more than to hold on to my fingers and pull himself up to standing. And how can I say no? He's so proud of himself and I am proud of him too. I want to help him learn and play with him and I don't want it to hurt anymore.

I've tried anti-inflammatories. I've tried other pain killers. I've tried ice. I've tried hot water. I've tried epsom salts. I even tried taping some of my fingers together to remind myself to try to give my hands a rest (though resting isn't very practical since I'm alone with OZL pretty much all day every day). None of it has worked, so I finally broke down and went to see my rheumatologist this morning.

Honestly I was sort of hoping for a diagnosis of tendinitis or carpal tunnel or something like that - both of which can be common post-partum and while doing repetitive tasks caring for a baby. But, no, it's my RA. My knuckles are swollen and inflamed which is causing the hand pain. Despite giving up breastfeeding to go back on my medications, my RA is still not completely under control. 

This information is both depressing and frustrating. Because we do want OZL to have a sibling in the not-too-distant future, my options for treatment are actually quite limited. Though I know it did help control my RA in the past, I've made the decision to stay off methotrexate until I am finished having babies. Methotrexate takes a while to start working and then takes at least 6 months to get out of your system before it is safe to get pregnant, and that's a timeline I just can't commit to right now. Not to mention that weaning off it in the first place is an experience I'd rather not have to repeat. And I'm pretty sure I've made my personal feelings about taking prednisone abundantly clear.

So, for the time being, I've opted for prednisone injections straight into my knuckle joints. Which, as you can probably imagine, is about as much fun as it sounds like. I got them in both hands this afternoon. They are supposed to take effect in a day or two and last two or three months. Hopefully this will help me regain the use of my hands for taking care of OZL (and, you know, anything else I might want/need to do).

In the meantime, now that we know my RA isn't being completely controlled despite all the meds I'm on, we may need to seriously consider how long we want to wait before trying for another baby. It seems completely crazy to think about having a second one when I'm already having trouble caring for the first one, but the reality is that my RA is uncontrolled and will probably continue to get worse. So the longer we wait, the harder the second one will be.

And I guess I have to acknowledge that a third one just may not be physically possible for me.

Music Class

OZL loves music. So when a Music Together instructor visited my playgroup (which I kept going to even after the uncomfortable experience with the mom and the miracle RA cure) and I saw how much OZL liked it, I signed up for music classes that same day. Since then, we've been enjoying music class together once a week. 

The class is very interactive and a lot of fun. All the adults clap and sing and dance around, and OZL loves playing with (and/or chewing on) all the different instruments and scarves and props. And we really love listening to the music at home and in the car too (it even calms OZL down sometimes when he is upset, which is awesome). We've already signed up for the next semester, and we're very excited about it.

But. 

But yesterday, music class was quite a challenge for me. OZL just learned to crawl, which we are excited about, but I guess he is using more energy so he also seems to get exhausted and cranky quicker than usual. He's also teething, and judging by how little APL and I slept last night I think we'll be seeing some new teeth soon. So I've got a tired, fussy baby on my hands.

On top of that, my RA is flaring. I feel totally fatigued and achy all over. And I'm having particular trouble with my hands, which makes doing literally everything difficult and painful. Especially a lot of baby related tasks like bottle prep and snapping those infernal tiny snaps that are all over everything. Which is hard enough when I am at home alone with OZL. It was even harder for me at music class yesterday.

I couldn't hold the instruments properly. It hurt to drum. I certainly had difficulty playing the castanets. My body ached sitting on the hard floor, but I also had trouble getting up to dance and move around and pick up my 22.5 lb baby.  I tried to participate as much as I could, but afterwards I just felt like crying.

I know I could have asked for help. I see the same mamas in class every week and we are making friends, and I'm sure they would have been understanding and helped lend a hand with OZL. And I know I could have participated less, because at this point OZL doesn't necessarily know what I am doing all the time anyhow. In fact, he was less engaged with me than usual since this was the first time he was able to crawl to the middle of the circle and select his own instruments, which he was pretty excited about.

But.

But that won't always be the case. Whether I get help and/or participate less, someday OZL is bound to notice that his mama isn't like the other mamas. His mama can't always pick him up, can't always play the instruments, can't always dance around the room or sit on the floor with him. And in a group setting like that, it's hard not to compare your abilities to the other mamas. And, though I know it's totally insane, it's hard not to feel like less of a mother when it is difficult for me to participate. 

It's something I will have to try to explain to him. It's something I will have to try to deal with and get over myself. And I'm sure I can. But I can tell already that it won't be easy.

10 Things I Hate About My Day

TMI warning: this post contains details of my day that those of you who are not parents may not wish to know about. Or really probably no one wants to know about this stuff. I know I don't. But here is a list of 10 things I did not like about my day today:

(1) Waking up with approximately 84 stiff, achy joints (what else is new?)

(2) Continued mostly sinus infection (it's been like 2 weeks now, green stuff, get. out. of. my. head!)

(3) Having particularly bad hand pain today (went bowling on Saturday for the first time since being diagnosed with RA and I thought I'd get by without increased hand pain?? hahaha!)

(4) OZL waking up with a fever (a tiny one, but still not a great sign...)

(5) OZL having a nasty poopy diaper complete with poopy balls that he immediately grabbed, thus getting poop all over his hands and almost everything else in sight (what is it with the boys and the balls?)

(6) OZL vomiting a literal fountain of vomit alllllll over himself, his pajamas, me, my pajamas, his bouncy chair, the couch, the floor, his favorite blanket.... (I was seriously freaked out about the sheer volume of vomit that came out of that little body...) 

(7) OZL refusing to nap because his bouncy chair was in the wash due to the aforementioned fountain of vomit (I knew that OZL having a favorite napping place was going to come back to bite me...)

(8) The dryer refusing to, you know, DRY THINGS even though I totally took it apart with a screwdriver last week and vacuumed the hell out of the inside of the lint trap (why isn't it working?!? If someone doesn't fix it or buy me a new dryer immediately I think I will stop doing laundry all together)

(9) When I finally did get OZL down for a nap, I took River out to throw her toy in the snow and she immediately pooped on her toy (because that's just the kind of day I'm having)

(10) Ant invasion in my living room (because why not?)

 Is it bedtime yet??

(Photo caption: Ohai. I just barfed all the barf on everything in sight and scared the crap out of my mama. Let's smile about it so daddy thinks mommy is exaggerating!!!)

PRODUCT REVIEW: Zippy Suits

DISCLAIMER: I received this product sample unsolicited and for free - and promised to review it completely honestly without receiving compensation. For details, please see my Product Review Policy.

Of the many frustrations I experience being a mom with RA, one of the worst is hand pain. When my hands hurt it just seems like caring for OZL becomes a lot more difficult. All his stuff is just so....little! All the little clothes and bottle parts and diapers and tiny-things-that-need-manipulating-with-my-sore-fingers. And all those annoying snaps. They. Are. On. EVERYTHING!

Which is why I was particularly grateful to find out that some baby pajamas come with zippers. On the ones I found, the zipper started in the middle of the collar and zipped all the way down one leg. This means that you have to shove the baby's other leg all the way down the side without the zipper, which can be a bit difficult with a wiggly baby. But it's still a lot easier than snapping a million and a half snaps - especially in the middle of the night or early in the morning when I am the most sore!

Then I got an email from Nicole about Zippy Suits. She thought her design could be a big help for parents with arthritis, so she sent me one to try. And she was right! Unlike my other zipper pajamas, Zippy Suits zip across the legs along the inseam - like those pants that have snaps for "easy" changing. Only is a zipper for actual easy changing! The zipper has a velcro cover to protect it from exploratory little hands and the fabric is super soft, 100% cotton. You have to pull the suit over the baby's head to put it on, which at first I thought might be tricky, but it turns out the folds in the collar make it quite easy. OZL seems to find it very comfy. Plus, it is adorable! All in all, we love our Zippy Suit!

NOTE: Zippy Suits are made in the UK and I found that the sizes were a bit bigger than US sizes I was used to. For example, OZL's Zippy Suit is size 6-9 months and still fits him with room to grow - whereas he is already wearing 12 months in most US brands.

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.