World Arthritis Day 2012

Today is World Arthritis Day! Please take the time to teach at least one person that arthritis isn't just for old people! I was diagnosed at age 25 and I've met children who were diagnosed as they were learning how to walk. Autoimmune arthritis is a lifelong condition and there is no cure (yet!) but by promoting awareness you can help those of us who have to live with arthritis every day.

With increased awareness, hopefully those of us dealing with arthritis won't have to face situations like I did yesterday.

The Miracle Cure!

Recently I've started to feel a bit frustrated by the long, exhausting days I've been spending taking care of OZL all on my own. I'm sure most new moms feel exhausted and achy, but the extra fatigue brought on by my RA and the pain in multiple joints can sometimes make a regular day feel almost impossible to get through. And though it sometimes feels easier to stay home when I am feeling so tired and achy, being home alone all day with an infant can actually get pretty lonely. It's not the greatest for my sanity. So I know I need to get out and do things for myself and find support where I can.

Which is why I was so proud of myself this morning when, despite feeling tired and achy, I got myself and OZL dressed and went to a local infant playgroup. Since infants don't really play with each other, the "playgroup" is really more of a mommy support group. The facilitator had us go around the room, introduce ourselves and our babies, and then talk about the parenting challenges we were currently facing. Some mamas talked about sleep issues with their babies. Others talked about disagreeing with their husband's different parenting styles. Others talked about struggling over choosing whether to stay home or go back to work. Then the facilitator and people in the group offered up any suggestions that they had for facing these challenges. When my turn came, I took a deep breath and opened up to the other moms about having RA and struggling with some of the more physical aspects of motherhood. Nobody had any suggestions for me, but they did listen and it did feel nice to acknowledge my struggles out loud. Plus we left the house! And talked to people!

When the facilitated part of the group was over, a lot of the mamas hung around and talked to each other for a while. I met one very nice mama with a ten month old who was trying to get rid of some bigger boys clothes - which OZL and I very happily accepted! Then another mama asked me for my phone number and email address. I was delighted - I thought she wanted to be friends or ask me out for coffee or something!

But, as it turns out, she didn't really want to get to know me any better. What she wanted was to talk to me about RA. And she didn't want to hear about my experiences or share her personal experiences with RA. No, she wanted to offer me the miracle cure. 

"Rheumatoid arthritis," she told me with authority, "is caused by bacteria. You just have to get the bacteria out of your system. I can email you some information on something you can take to get the bacteria out of your body."

I was flabbergasted. I had zero idea how to respond. I mean, while there actually is some scientific evidence that bacteria could be linked to triggering RA, it's certainly not as simple as "just get the bacteria out of your body and then you'll be fine for the rest of your life hooray!!" Because if there really was something so simple and foolproof that you could do to actually cure arthritis, I'm pretty sure my army of doctors would have told me about it!!!

But I was at the playgroup to try to get support and make friends, so I wanted to be polite and try keep the friendly vibe going. After taking a few deep breaths, I told her I had never heard about this theory. I asked her how she knew about it - did she have a personal connection to arthritis? No, she heard about it from a doctor she worked with. I asked what kind of doctor? She said a homeopathic one. I said that I certainly found natural remedies worth looking into, and that I've even heard of them working for some people, but I explained that arthritis is actually quite a serious disease. I told her that kids can get it and that I have to take pretty serious medication to keep my symptoms under control. She told me I wouldn't need to use medications if I was willing to get the bacteria out of my body. She said it was a matter of me being willing to do it, and if I didn't I would have a lifelong condition. It was at that point that I thanked her for her information (yes, for some reason I actually thanked her) and changed the subject to how cute her daughter was.

I left the playgroup feeling...really weird. I felt frustrated that I didn't do a better job educating her about the realities of arthritis. I mean, I really tried to, but I was so surprised and flustered that I wasn't able to come up with as many facts as I would have liked to. But I guess it doesn't really matter, because she wasn't listening to me anyways. She was convinced that there was a simple, natural cure for my arthritis - which, by her logic, essentially means that I've been struggling and suffering for the past four years by choice. If only I had been willing to try her natural remedy I wouldn't have to take such nasty drugs and I wouldn't have had to make the difficult decision to stop breastfeeding (which I'm sure she thought I never should have done). And while I know the logic is absolutely absurd, the implication that my struggles with arthritis have been some kind of "choice" on my part made me feel pretty awful. No one chooses to have a lifelong illness.

Today I made myself vulnerable to a bunch of strangers looking for support, but instead I got judgment. And that's messed up. But at least I did my best to be polite and educate her. I'm not sure what else I could have said. Now I just have to do my best not to let this ignorant advice ruin my day.

The Hangover

Last weekend I did something stupid. From the title of this post, I'm betting you can guess what it was.

We had our mommy/daddy friends over for dinner on Friday night. I made buffalo joes. We had a wonderful evening of talking and laughing - and trying to wrangle four babies. At about 8pm we were trying to get all four babies to go to sleep so that we could hang out for a while longer. Needless to say it was not going well (I believe one of our friends used the term "baby apocalypse" to describe the situation). We finally got one baby to sleep in the rock 'n play downstairs while the other three caused chaos in the guest room and nursery upstairs. 

Maybe it was because he missed his bath (part of his bedtime routine) or maybe it was because of all of the excitement in the house, but OZL was being extremely fussy. So were babies #3 and #4. But as I rocked OZL in the nursery and tried to get him to calm down, I realized it was finally quiet in the guest room. When I poked my head through the door a few minutes later I figured out why - both babies were happily nursing while their mamas breathed a sigh of relief. And it was then that I got hit by a wave of sadness I never expected.

Suddenly I absolutely could not handle the crying baby in my arms. How was I supposed to calm him and reassure him if I couldn't nurse him? What kind of mother was I? For a moment I felt lost and didn't know what to do. Then I took a deep breath and did something responsible: I went downstairs, told APL I needed a break, and asked him to be in charge of OZL for the rest of the evening (which he happily did). Of course, I then did something quite irresponsible: drank as much as I wanted since no one but me is dependent on my body anymore.

On the plus side, I ended up being able to relax, move past my sadness, and actually have a really amazing evening with my friends. I honestly can't remember the last time I laughed so hard. But on the downside, since I haven't done any major drinking for about a year, I pretty much destroyed our Saturday with my horrible hangover.

I have to admit that it's quite an adjustment to have my body back to myself again. It's been a very long time since my body has been completely my own - with my choices affecting no one but me. It was almost exactly a year ago that I found out that I was pregnant, but it was ten months before that that I first stopped taking my meds to prepare my body for pregnancy. So I essentially started turning my body over for OZL's use in December 2010. Which means that it has been nearly 2 years since my body has really, truly been my own.

Considering all that, I guess it's not surprising that I've been dealing with some body-image issues. But that will have to be a post for another time, because I can hear you-know-who waking up from his nap!

California Coast Classic: Day Eight (The Last Day!)

Today APL and his cousin rode the last 60 miles from Ventura to where we were waiting for them at the finish line in Santa Monica. OZL and I were both very, very happy to see them!!

APL raised a total of $5,450 for the Arthritis Foundation and did a amazing job riding 525 miles down the coast of California. I think I've only heard about half the stories so far, but it sounds like he had an awesome time on the ride and met some amazing people.

We're so very, very proud of him!! And we're super happy to have him back with us! We head home to Colorado tomorrow.

California Coast Classic: Day Seven

Today APL and his cousin (go Team Z!!) rode 90 miles from Buellton to Ventura. (The map I'm posting is not totally accurate because something went wrong with APL's tracking app - they really rode 90 miles!) Sounds like they are both tired but had a good day. APL also got to meet the little girl who was the ride honoree for today - but she's blurry in the picture because apparently she was so excited to be there that she couldn't stay still!!

 

 

OZL and I had a busy day too. We visited one of grandma's friend's this morning and then this afternoon grandpa threw us a pool party. A lot of our local family members were able to come (cousins! So many cousins!) and a couple of my friends from high school and their kids too. We visited, took a swim, ate delicious BBQ, and watched football. It was a lovely evening that went by too quickly. OZL is super tired but still did a great job getting through the evening. And his tummy has been feeling a lot better today, which makes me feel a lot better too.

It has been really great to visit with everyone this week, but we CAN NOT WAIT to see daddy at the finish line tomorrow!!!!

California Coast Classic: Day Six

Today APL rode his bike 70 miles from Pismo Beach to Buellton. The ride went through wine country so obviously there had to be some wine tasting! APL said they went to three wineries and the Firestone Walker Brewery. It sounds like it was a lovely time and I really wish I could have been there too. APL also met up with his cousin this evening, who will be joining him for the last two days of the ride. Go Team Z!!

 

OZL and I had lunch today with his uncle (my brother) and his uncle's girlfriend. Then we went to hang out at Granny's (my mom's) house for a while. Later APL's parents, my godfather, and my sister's godmother joined us at my mom's house for a very lovely dinner.

OZL's tummy is doing slightly better, but he is super exhausted from not feeling well and all the excitement of this extremely busy week. It also doesn't help that it is approximately one billion degrees in Los Angeles right now. As much as we can we are trying to stay cool and relax - though the relaxing part can be a bit difficult because there are just so many people here who want to meet and love him! We are really looking forward to seeing daddy cross that finish line on Sunday!

California Coast Classic: Day Five

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Today APL rode his bike 60 miles from San Simeon to Pismo Beach. He's having a marvelous time - I hear margaritas were involved after the ride this afternoon! And tonight instead of camping he's staying with one of his mom's friends, so I'm sure he's being extra spoiled!

OZL got to meet one of my favorite people in the world today: my godfather, who is also OZL's great great uncle and performed part of APL and my wedding ceremony. We went to breakfast with my mom, so there were four generations all together. Then we spent the afternoon just relaxing at Grandma and Grandpa's house (APL's parents). OZL is still having trouble with his tummy and is still really tired from all the excitement, but he is doing a lot better today.

Though we're happy he's having such an awesome time and we are so very proud of him, we're really starting to miss APL!! So we're really looking forward to seeing him cross the finish line on Sunday!!

California Coast Classic: Day Four

Today APL rode about 60 miles from Big Sur to San Simeon. The cell phone reception has been really spotty, so we haven't had much of a chance to talk. But it sounds like he is still having a great time and feeling good. And he did manage to send a few pictures. 

OZL and I spent the day with one of my very good friends from high school and her daughter, who is five weeks younger than OZL. We had a very lovely lunch, some frozen yogurt, and took a walk by the beach. Unfortunately, OZL is still struggling with his tummy, so he wasn't a completely happy camper - the poor little guy. And I am still struggling a little bit myself with feeling guilty that he is in pain because of the switch to formula. Plus my boobs still hurt. But we're hanging in there, and I know we will both be feeling better soon.

California Coast Classic: Day Three

Today APL rode about 40 miles from Monterey to Big Sur. He checked in with me and sent a few pictures this morning, but I haven't heard from him since. I assume that his phone died or maybe there's no reception where they are camping tonight. Hopefully we'll get an update on his progress tomorrow. 

 

Today OZL and I were both feeling pretty exhausted from the past few busy days of visiting, so we spent a quiet day at grandpa's house. Unfortunately, we still had a pretty rough day. (TMI warning!) OZL had some major trouble with his tummy today (constipated baby = I don't recommend the experience). I'm fairly certain the trouble has to do with adjusting to his 100% formula diet since we arrived in California (at home he was still getting defrosted breast milk a few times a day). So today OZL was struggling and straining and miserable and screaming, and I ended up feeling totally horrible about the whole situation, especially because every website I looked at for advice about baby constipation told me that he wouldn't be constipated in the first place if I was still breastfeeding (insert mommy guilt here). I know that weaning was the right decision for both of us, but seeing my baby in pain because of that decision was extremely difficult for me - especially since my poor boobs are still full and swollen and SO extremely sore, despite my two weeks of slow weaning. My boobs are so painful that I have resorted to the old wives's tale solution of wearing cabbage leaves in my bra. I have no idea if it is really helping, but it feels mildly satisfying to at least be trying something. Because it is fairly horrific when your boobs ache with poison milk that you cannot feed your baby, who is crying miserably because his tummy hasn't adjusted to the formula you are trying to feed him instead. It has been a hard day for both of us.

But I also got a reminder today of exactly why I stopped breastfeeding in the first place: my RA took a turn for the worse. Despite the prednisone and the Enbrel injection last Friday, I woke up this morning with severe pain in my knees. The extra pain did not help me get through this day, but it did remind me that I made the right decision in stopping breastfeeding (though my boobs clearly still disagree). Today my knee made it difficult to get up and down and hold and rock my crying, unhappy baby. So it's obviously time to let my meds start doing their job again so I can feel better. I had no time to spare.

Luckily, grandpa (my dad) was extremely wonderful and supportive and helpful today. Hopefully OZL and I will both get some good sleep tonight and be feeling better tomorrow. And hopefully APL is doing awesome and we will get an update from him in the morning.

California Coast Classic: Day Two

Today APL rode his bike 50 miles from Santa Cruz to Monterey. Sounds like the ride was cloudy and a little bit wet today, but still went well. And, after almost 150 miles and one night of camping, APL says he is still feeling pretty great! Tonight he hitched a ride down to cannery row and is enjoying Monterey. 

OZL and I had a busy day too. I met up with some of my high school friends and their babies, and we even went to visit our high school water polo coach! (Was she ever supposed to see us with our babies!!) This evening OZL and I are hanging out with grandpa and his uncle. We do sort of wish we could be in Monterey with daddy, but we also are having a really nice time visiting with everybody here!! And we're really proud of APL. Go, daddy, go!!