Wednesday, August 29, 2012

It's Time

Monday night I barely slept at all. I slept maybe an hour or two as it was starting to get light and then woke up in tears, so sore that I could barely lift OZL from the co-sleeper to nurse him. Totally exhausted, in a huge amount of pain, and crying, I finally made the decision that I've been trying to avoid for the past six weeks: it's time

It's time to stop breastfeeding so that I can go back on my meds and get my RA under control. It's time to start feeling better so I can take care of my son. 

It really wasn't an easy thing to admit. I've been fighting this decision tooth and nail for the past few weeks as I have been feeling worse and worse. OZL takes a bottle happily - even from me when my boobies are right there - so I don't think he will have any difficulty weaning. He's hungry, so as long as he gets fed he's perfectly happy! But I know that I will have difficulty weaning him. I know that it is going to be not only physically painful, but also mentally and emotionally painful for me. 

On the advice of Amalah (and a bunch of the comments on this post) I am going to try to wean a bit more slowly. Apparently stopping cold turkey isn't the greatest, both because it hurts your boobs the most and because your hormones help you go a bit crazy (one of the comments uses the description "hot mess" to describe her emotional state after weaning cold turkey. If possible, I'd like to avoid being a hot mess.)

On the other hand, now that I have finally made this extremely difficult decision, I really do need to just get the weaning done. If I draw it out too long I know I will have too many opportunities to change my mind, to go "just a little bit longer," to convince myself that the detriment to my own body is for some reason worth it, to be my own stubborn self (how do you think I got those fancy law/graduate degrees after getting diagnosed with RA in the middle of my dual degree program?) But I already know that I can't be my own stubborn self in this situation, because it's not just about me anymore. I can't dig myself into a hole that I'll later have trouble getting out of because I then I won't be able to be a good mom to my son. So: it's time. It's time to find a middle ground and wean OZL slowly enough that it won't be too painful, but quickly enough that I don't second guess myself for weeks and weeks. 

We've already started skipping nursing sessions and substituting them with a bottle. And I'm not going to lie - it has been very painful for me; for my over-full boobs, but mostly for my heart. It just isn't what I want. At all. I know it's the right decision and I know it's really for the best, but I just really, really wish it didn't have to be this way. When I first got diagnosed with RA, I feel like I had to go through a grieving process over the things I had lost - my active lifestyle, my career aspirations, the ability to hop out of bed in the morning feeling great. It took a long, long while to accept that all of those things were gone. Or, at least, that I would need to fight through a lot of pain to keep them. Eventually I reached a point where I feel like I accepted my new reality, embraced my life with RA, and it didn't hurt quite so much to think about how RA had forced me to change my life. Or, at least, I thought I had accepted my new reality with RA. But now, after OZL's birth, I am realizing that there are pieces of motherhood that will also be affected by my RA. There are parenting decisions, like whether or not to breastfeed, that I really won't have any choice about because of my health. So I feel like I have to start that grieving process over again, grieving for some things that I never actually had. I feel really sad about the impact RA is having on my life in a way that I haven't felt in a long time. Years, maybe.

But, from this point we have to go forward, right? I have to push forward to feel better, move on, and experience all the other wonderful parts of motherhood that I know are on the way. So I'm working on it. The first thing I did after I made the decision (after, obviously, crying about it for a while) was to contact our "mommy/daddy friends" - two couples that we know that have babies - and invite them over for dinner. I knew that I would need help and support and love and a reason to laugh on this horrible day. They did not disappoint. We had a pot luck dinner, they were super understanding and supportive of my decision, and I laughed harder than I have in a long time (even though I cried when I fed OZL his bedtime bottle.) I'm so, so, so grateful to have such amazing and supportive friends. And I'm also glad that I told them about my decision right away, so that they can help hold me accountable and encourage me to keep going with the weaning when I feel like changing my mind.

I also bought some formula, though it took me two tries to do it. The first time I stood in the formula aisle, got overwhelmed and slightly disgusted with the whole thing, and left without buying anything (even though I already knew what brand I wanted to try first. It was right there on the shelf. But I just couldn't seem to pick it up). This morning I successfully bought the formula (though I totally cried in the car afterwards). But I stubbornly have not given OZL any formula yet - and I don't plan to until after his three month birthday tomorrow. I like being able to say that he was exclusively breastfeed for the first three months. I know in reality a day or two doesn't make any difference whatsoever, and that formula is perfectly healthy and fine, but somehow it makes a difference in my head so I'm sticking with it.

For now OZL's bottle feedings are coming out of the stash that I've been diligently building up in the freezer like Scrooge McDuck (the picture on this post!) I actually have more than three gallons of breastmilk in my freezer - approximately 70 more feedings where OZL will get the benefits of breastmilk. Maybe even more than that, since I think we will mix formula and breastmilk to get him adjusted to the new taste before we run out of breastmilk.

I know I've done absolutely everything I can to maintain our breastfeeding relationship as long as possible and to provide my son with the benefits of as much breastmilk as possible. I know I've done a good job. And now it's time to move forward. So here we go.

Tuesday, August 28, 2012

Sunday, August 26, 2012

JA Family Day

Yesterday we went down to Denver to volunteer at JA Family Day like we did last year. Though, to be fair, this year APL did most of the volunteering, while I mostly walked around talking to people with OZL strapped to my chest!! Since I didn't get to go to camp this year, it had been a long time since I had seen most of those kids - I could not believe how much they had all grown!

While the parents of the JA kids went to seminars to learn more about their kids' conditions and how to help them, we just got to have fun. First we played some silly Minute To Win It games, which got everyone laughing. Then all the kids (and APL) got to go swimming. And then it was time for lunch. During lunch I had OZL on a blanket on the floor, and he gained himself quite a fan club with the little girls!

After lunch we made rocket cars with diet cokes and mentos. It was messy hilarious fun and the kids had a blast! And OZL was such a little trooper through the whole thing, which was awesome. I'm so glad we could contribute again this year.

Saturday, August 25, 2012

Thank You, Amalah

My favorite mommyblogger, Amalah, writes the advice column on the parenting website AlphaMom. Amalah always does an amazing job of putting difficult issues into perspective, while reminding us that laughter is almost always the best medicine. She has a week by week pregnancy calendar that is spot on and hilarious. And it was Amalah who finally convinced me and APL that cloth diapering was not actually all that scary (and now if you ask me what I think about cloth diapering, I will gladly rant about how awesome I think it is. But, in fairness to you, I'll wait until you ask!) In any event, I've come to value Amalah's stories and advice when it comes to many mommy-related topics.

I had never written to an advice column before, but when my joint pain started to return and I found myself thinking in circles about whether or not to keep breastfeeding I decided: what the heck, let's give it a try. So I sent Amalah an email requesting advice about my situation. I didn't know whether or not she would respond or even what I expected her to say - especially since I knew from reading her blog that she doesn't have any personal experience with RA (or other autoimmune issues for that matter.) But I figured that there must be other moms out there who were forced to stop breastfeeding to take care of their own health, and I thought Amalah might have some general advice for us.

And she did. Amalah published her response to my question on Wednesday - which was really perfect timing after my discouraging rheumatologist appointment on Tuesday. It was also the same day that OZL turned 12 weeks old, and I realized that I have already made it twice as far with the breastfeeding as I thought I would when I originally wrote to her for advice.

The whole column was really uplifting and full of great advice. Here is my favorite bit:
Try as hard as you can to not view every day of nursing as potentially “one of the last,” but as a major, awesome accomplishment. Don’t let the inevitable weaning dominate your thoughts and keep you from enjoying the days you have. 
This is excellent advice. I must admit that recently I've been dwelling so much on the inevitable end of our nursing time that I haven't really been savoring what we have together now. I need to do that. I need to look down at my baby boy and commit those moments to memory - the feel of his soft skin, his tiny quiet sounds, the contended look on his face. I want to remember those moments forever and if I keep focusing on "the end" I'll miss out.

Aside from offering uplifting words and excellent advice, there's another reason that Amalah's column about RA and breastfeeding is totally amazing. During my pregnancy, I spent a lot of time researching the issue, only to come up mostly empty. There just isn't a lot of good information out there. Anywhere. When I realized that resources were few and far between, I scoured the internet looking for personal stories from mamas who had come before me. I knew I couldn't be alone in wanting (needing) this information. I knew there must be other RA mamas out there who might have some pertinent advice - or at the very least help me feel less overwhelmed and alone. In all my searching I managed to find one or two blogs that contained breastfeeding stories from fellow RA mamas. A couple more RA mamas have contacted me through this blog. But, still, the personal stories were also few and far between.

But in just three days, the comments on Amalah's column already contain more stories from fellow RA/autoimmune mamas than I managed to find in nine months of pregnancy-induced crazy research. It's truly amazing. There's a wealth of advice and support blooming on the thread - like a little community for us to realize that we aren't really alone. And, since AlphaMom is a pretty well-known parenting website, hopefully the mamas who come after us will have an easier time finding the information and support they need.

So thank you so much, Amalah, for responding to my letter. Your words mean more to me than you could ever possibly know. And you've done something really amazing for the arthritis/autoimmune community.

Thursday, August 23, 2012

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.

Saturday, August 18, 2012

Someone Has Sleep Issues (And It Isn't The Baby)

It's 3:17am, which is not really an unusual time for the mother of a two and half month old baby to be awake. The unusual part is that OZL is currently sleeping soundly - and has been since about 8:00pm (seven hours!!) APL is asleep next to me while I type this blog post on my phone. I'm the only idiot who is awake.

I woke up around 1:30am because (TMI alert) my boobs were full to bursting and I needed to pump. We had fed OZL some defrosted milk before he went to bed so that mommy could have a few Friday beers, so by then it had been quite a while since my boobs had last been emptied.  So I woke up and pumped. And then I lay back down to try to go back to sleep. But I couldn't. So I sat up and read my favorite mommyblog for a while to see if that would help me get sleepy. It didn't. I closed my eyes again anyway and tried to get comfortable without waking APL up. But it was no use. And here I am 2 hours of wasted baby-is-actually-asleep time later. Awake.

I know that part of the problem is that I expect OZL to wake up at any moment and expect to be fed. Seven hours may actually be one of the longest stretches he has ever slept - usually we get about five or six in a row when we first put him down at night (for which we are very grateful!) So partly I think my body/brain is protesting sleep because I don't want to have just fallen asleep when he finally does wake up - because that's no fun.

But, unfortunately, I think it's more than that. This isn't the first time I've had trouble falling back to sleep after a middle-of-the-night feeding. It happened last night too and has been happening more and more frequently. And I think I know what might be to blame: prednisone.

One of the delightful side-effects of prednisone is insomnia. I've actually experienced this particular side-effect before. And while I've been taking my dose of prednisone in the morning to try to avoid this issue, I'm having a hard time coming up with another explanation for why I've been having so much trouble falling back to sleep in the middle of the night. Because it's not like I'm not tired - I'm totally exhausted and I know I really need the sleep. I just...can't.

And it sucks. Especially because it makes my quest to continue breastfeeding that much harder. If I want to keep breastfeeding, I don't think stopping - or even reducing - the prednisone is an option. I'm fairly certain it's the only thing keeping my joints moderately functional, and even with the prednisone I can still feel the pain slowly getting worse. And while in the past I used a sleep aid to deal with this particular side effect, that isn't really an option right now - both because I am breastfeeding and because I need to be able to actually wake up when OZL needs me. Don't operate vehicles or take care of infants as an ambien-induced zombie.

So I'm not sure what to do other than keep trying to sleep I guess. It's now 3:48am and OZL and APL are still asleep. Hopefully I'll be lucky enough to join them soon.

Saturday, August 11, 2012

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!!

Tuesday, August 7, 2012

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!