Thursday, December 27, 2012

Dear Santa: Please Bring Enbrel

It's been a while since we've had a pharmacy fail adventure around here! But we had another - just in time for Christmas!

My insurance requires me to order my Enbrel from a specialty pharmacy. This means that once a month I get on the phone with the pharmacy, answer two dozen questions (I have no idea why they ask me every single month instead of, you know, keeping it in a file or something), and arrange for an overnight shipment of Enbrel. I get four pens at a time.

Last Monday, I took my last dose of Enbrel and immediately called the pharmacy for a refill. They said I had no more refills and that they would need to get authorization from my doctor and call me back. Now, here's the part that is my mistake - I should have called to nag them the very next day, but with all the holiday preparations it totally slipped my mind. They didn't call back until Thursday. Still, they assured me my Enbrel would arrive on Friday.

It didn't arrive. Obviously. 

I was quite worried. I really didn't want to miss a dose and feel crummy (i.e. crummier) on Christmas. So I called the pharmacy. They were closed for the weekend. Finally I found a customer service number that was open and called them. They said the package would arrive on Monday. That worried me too, because at that point the Enbrel would have been out of the fridge for five days. Would the Enbrel be ok? They didn't know. They gave me a UPS tracking number and told me to call the pharmacy on Monday.

I entered the tracking number on the UPS website. "Your package is on its way." Not very specific. I called UPS. "Due to the high number of calls we are currently receiving, we cannot take your call right now." They hung up. I understand that UPS was very busy with holiday packages - but this is my medicine! It's very important! Do you really mean I can't talk to a human about it?!? 

In the end, was completely unable to get any useful information from anyone. I had to settle for crossing my fingers that the Enbrel would (1) actually arrive on Monday and (2) still be safe to take so I wouldn't miss a dose. And, like a small Christmas miracle, it actually did arrive - ice packs still frozen. I finally spoke to the pharmacy and they assured me that UPS kept the package in a refrigerator over the weekend. 

So I was able to take my dose of Enbrel and have a very lovely first Christmas with OZL!! A happy ending!! I hope everyone else had a wonderful Christmas too!!

Sunday, December 23, 2012

Healthline's Best Health Blogs of 2012 Contest

Recently this blog won an award for being one of the 22 Best Rheumatoid Arthritis Blogs of 2012.

Now I've been nominated for Healthline's Best Health Blogs of 2012! First prize wins $1,000, which APL and I would happily spend on OZL (babies are expensive, man!) 

I would really, really appreciate your vote!! You can vote once a day until February 15, 2013. Click here to vote - or use the badge on the menu that says "Vote for Me!" Thank you!!

Friday, December 21, 2012


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.

Sunday, December 9, 2012

Jingle All The Freezing Way!!

Today we braved the 20 degree weather to participate for the third time in the Jingle Bell Walk for Arthritis! I am super excited to report that we had our biggest Team Z yet - 18 adults, 1 kid, 3 babies, and 2 dogs!!

I did almost the whole 5K despite my sore knee (I must admit that I took a slight shortcut at the end because OZL, despite being bundled like an eskimo, was getting cold and hungry). I'm so grateful to all my friends for coming out today to support me despite the freezing weather!

Monday, December 3, 2012

Pop Goes The Kneesel (Again)

Remember when this happened? Well the other day it happened again. I was at my sister's apartment and we were making dinner. We were listening to music, but then decided to put Funny Girl on instead. I sat down on the floor in front of the TV to put the movie on and then got back up - no problem. 

But as I walked over to turn the music off suddenly my knee gave out and I was on the floor in tears. Just like last time. Only this time I was carrying OZL when it happened.

Luckily he was strapped to me in the BabyHawk, so I didn't drop him or hurt him or anything. But he did get pretty scared as we fell to the floor. My sister rushed over and took him from me and he calmed down in a minute or two. And with some ice, some rest, a knee brace, and lots of advil my knee is doing ok too. It still hurts but I can walk on it and everything. So everyone is fine.

But it is a little scary to think about the what ifs. What if this had happened when I was carrying OZL down the stairs? What if I had been alone? Or in the grocery store? What if I had dropped him or he had gotten hurt? 

I guess it doesn't help to get to freaked out over things that haven't happened. Things that hopefully will never happen. But it does make you think. Being a parent means being as careful and prepared as you can be, but it also means being ready to deal with the unexpected. I guess being a parent with arthritis just makes things a little bit more unexpected. 

Thursday, November 15, 2012

"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!

Tuesday, November 6, 2012


Belated Happy Halloween!! Have you ever seen a cuter Harry Potter? ~;o)

All's Quiet on the Blog Frontier

I know, I know...long time, no blog! 

For one thing, OZL has been keeping me really busy. It is really difficult to get a few minutes to myself to sit down and write a blog post. But, for another thing, I've honestly been having a hard time thinking of anything that I really want to blog about.

That's not to say that I've been feeling totally fantastic. I haven't. In fact, I've been exhausted and dealing with several different sore joints at once. I'm still not super in love with my body right now, and loosing the baby weight isn't an easy task with the fatigue and achy joints - and of course that baby I have to take care of all the time! But OZL, River and I have been trying to walk a mile or two every day. And my wonderful sister looks after OZL so I can still go to Pilates every week.

Some days I still really struggle to get by physically. But one good thing about taking care of a baby is that everything takes forever anyways - so if I have to slow down a bit more to accommodate my aches it seems a lot less noticeable now that it was before! Also, OZL is made of magic and spending my days with him just makes me so happy that the aches and pains just seem to matter a whole lot less. For the most part I'm just busy being happy with my son and I don't spend a lot of time thinking about my RA these days.

In fact, the only reason I remembered that I ought to write a blog post at all is that we are finally down to the end of my frozen breastmilk supply. OZL has still been getting a bottle or two of breastmilk every day - and he'll drink the last of it this week. And, quite unexpectedly, I think I'll be sort of relieved when he does. I won't have to fuss with defrosting and re-heating milk anymore. I won't have to be worried that the breastmilk is almost gone. It will all just be over and we can move forward to all the other important things we have coming - like eating pears!!

Friday, October 12, 2012

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.

Thursday, October 11, 2012

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.

Saturday, October 6, 2012

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!

Sunday, September 16, 2012

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.

Saturday, September 15, 2012

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!!!!

Friday, September 14, 2012

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!

Thursday, September 13, 2012

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!!

Wednesday, September 12, 2012

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.

Monday, September 10, 2012

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!!