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.

Writer

When I was in the six grade, we had to do a report on what we wanted to be when we grew up. Then we dressed up as our planned occupation and had a fancy black & white portrait taken. So I am pleased to present to you the six-grade future Mariah: writer. 

When I was 11, I wanted nothing more than to be a writer. I was a bit of a bookworm (understatement) and I thought there would be nothing cooler in the world than to walk into a book store and see a book with my own name on it.  Though I'm sure I pictured myself writing fantasy or sci-fi novels, it turns out I was closer to my future than I ever could have known (right down to the Save the Whales t-shirt and other hippie wardrobe choices - did I know I'd be moving to Boulder or something?)

Today, as it turns out, I actually am a writer (and a hippie). I get paid to write, and often about environmental issues. I already have one book with my name on it (though, unfortunately, my name is not on the cover - I'm listed as a co-author on the title page): International Environmental Law in a Nutshell, 4th Edition. With a title so thrilling I am sure you are all rushing out to purchase said book right now! (Don't bother, I don't get any royalties on that one anyways!). My second book will be published this coming fall. Co-authored with my uncle (a former physics professor) this book is about oil, politics, and environmental justice in Louisiana. 

I've also been writing this blog for four and a half years. While I don't get paid for any of the content on this blog (and don't ever intend to - this is a space for my personal story), this blog did lead me to another writing job on a topic I never considered when I was 11: arthritis. I have just been hired as the Arthritis Expert at Answers.com, where I'll be writing articles about different arthritis topics every month. I have five published there so far:

What is Arthritis?

What is Osteoarthritis?

What is Rheumatoid Arthritis?

What is Juvenile Arthritis?

Other Types of Arthritis

I'll be posting links to my articles on my Facebook page as they are published, as well as doing a month-end list here on this blog. I've also added an Answers.com Articles tab to the blog that will contain a list of all my published articles. I'm super excited to have a part-time writing job I can do from home while OZL naps! And while I have to follow strict formatting instructions for my articles, I still hope they will be informative, accurate, and useful for people searching for information about arthritis. 

(NOTE: A lot of the information about arthritis on Answers.com was not authored by me, so if you ever spot an error or misleading information about arthritis on that site please let me know right away so that I can get it edited!)

RA Global Survey

I recently got an email from Suzie Edward May, author of Arthritis, Pregnancy, and the Path to Parenthood. She encouraged me to take 20 minutes out of my day to participate in the first global survey about RA - and if you have RA I want to encourage you to do the same!

You can take the survey here!

Here's what Suzie had to say about it:

Dear Friends,

Please take a moment to complete a Rheumatoid Arthritis global survey that is being conducted by the pharmaceutical company, AbbVie.  

The intention is to gather new information from people living with RA that will be collated and analysed globally as well as locally.  The results will help support RA education and advocacy work in the future.  Thirty nine countries are participating in 30 languages.

Topics cover four broad areas:

· Knowledge gaps or disease management – to evaluate the existing consumer knowledge level about RA’s severity and progression and how well they understand how to manage their condition

· Effectiveness of current information resources – to determine consumer perceptions on available RA information and education resources, how they access this information and what other types of RA resources they would like to see made available

· Quality of life impact – to understand more fully how RA affects individuals physically, mentally, emotionally and professionally

· Relationships impact – to explore consumer perspectives on engagement with health professionals, care-givers, family, friends and employers in managing their RA and how the wider communities’ perception of RA impacts on the health consumers mindset.

The survey is now live on www.RAJointheFight.com and will close on April 11.

Thank you for taking 20 minutes out of your day to support this initiative - the results will hopefully make a positive impact on the lives of those of us living with RA (and potentially other forms of arthritis too).

Suzie Edward May

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!!!)

My Struggle

I'm really struggling this week. 

That sentence feels like a totally crazy thing to type considering all the wonderful things that are happening in our lives right now. Last weekend we were lucky enough to be invited on an amazing trip to Winterpark. We stayed in a beautiful cabin with three other families - a total of four couples, three babies, and three little boys. Plus another couple we knew was staying nearby with their baby, so it was a weekend totally full of friends and fun. We took turns watching the babies so that people could ski, and I got to get on my snowboard again. We ate APL's amazing chili and talked and laughed until our bellies hurt. The next day we took the kids and babies to the local rec center where there was a waterslide and a lazy river and we had a fantastic time swimming and taking pictures with my underwater camera. It was so much fun and I feel totally blessed to have found such wonderful and supportive friends.

Monday was APL's birthday, and we celebrated with a bunch of friends at a local brewery and everyone had a great time. Monday was also the day that APL started his awesome new job. He was miserable at his last job for a very long time, so finding a new one has been a great step up for him. Not to mention the new job comes with a raise, a better working environment, and options for advancement. It's fantastic for our family and APL is really excited about it. And I am so proud of him and happy for him.

But.

But I have to admit that, personally, I am struggling this week. It doesn't help that for me after any wonderful, busy, active weekend comes a few days of feeling like I have been run over by a truck
(the gift of RA!) It also doesn't help that OZL has been waking up early every day this week, well before the worst of my stiffness wears off, so I feel fatigued by the time I've fed him breakfast and the days are feeling endlessly long and frustratingly exhausting.

And while there is absolutely no doubt that APL's new job is better for our family, there are some things that I need to figure out how to adjust to and deal with. The one thing we liked about his old job was his schedule. He worked four 10-hour days, which gave him one extra day at home every week to help me take care of OZL. The new job will be five days a week, and while he will only work 8-hour days, the job is in Denver which adds about a 45 minute commute each way. So he is essentially still gone for 10 hours every day, only now it is five days a week instead of four. Which means I now take care of an 8 month old baby by myself five days a week instead of four. 

The main reason this schedule change is a little problematic for me is that I recently accepted a part-time writing job (which I will write more about in a future post). The job is product-based instead of hours-based, which means I don't have to work particular hours as long as I get my monthly amount of writing done. However, when I accepted the job I was counting on having one day a week where APL could look after OZL and I could work. And now I'm not exactly sure when I am going to get all the writing done. I do have a nanny who comes for three hours twice a week, but I don't think that will be enough time for me to get all my work done. So I've started writing while OZL naps (like right now) or trying to entertain him in a bouncer or with some toys while I work. I have managed to get some work done this way, but the downside is that I feel like I am working every second of every day and that I hardly have 30 seconds to myself. I'm actually jealous of APL's commute where he gets to sit on a bus by himself for 45 minutes! In fact, I even feel a bit guilty about taking the time to write this post - even though I know it will help clear my head.

The last worry lurking in the background is the health insurance situation. APL got his new job through a recruiting company, so he is starting off as a contractor working for the recruiting company instead of the actual firm where he will (hopefully) eventually get hired. Luckily the recruiting company does offer a health insurance option for the contract period, but I have no idea whether or not it will cover my expensive meds - we're still trying to figure all that out. Or we can always stick with COBRA from APL's last job for the interim, but that's expensive too. The good news is that we will be covered, in one way or another, until APL gets hired by the firm for real. But my insurance nightmare spidey-sense is tingling. I'm nervous my drugs won't be approved or there will be a delay, and with how I'm feeling already I'm not sure I could deal with feeling much worse. Or I'm worried it will be horribly expensive. Not to mention that we could have to switch doctors and I could lose my amazing rheumatologist or my pediatrician. And when he does get hired by the firm, we'll have to go through the insurance switch all over again. But it isn't clear when that will be - a month? Three months? Six? I am grateful that we will have health coverage one way or another, but I'm just nervous about how it is all going to work out - and how I'm going to end up feeling in the interim.

It seems selfish to say that I am struggling when all the changes that are happening right now are for the better. I will have a happy husband and ultimately life will be much better for our family. But right now I could use some help getting through the transition. Luckily for me, OZL's smile is helping me push through.

More Pharmacy Nonsense

After my last, ahem, "special" experience with the CVS Specialty Pharmacy, I called my insurance to find out what my other options were. I chose another pharmacy who very efficiently collected my information, spoke with my doctor, scheduled a delivery, and actually delivered it. On time. I'm very happy with them so far.

A few days after my refill was delivered, I started getting automated calls from CVS reminding me that I needed to order a refill (how timely!). This morning I finally decided to pick up the call so I could tell them to please stop calling me. Ever again.

Here's how that went:

CVS: This is an automated call from CVS Specialty Pharmacy. Is this Mariah or her authorized caregiver? Say yes or no.

Me: Yes.

CVS: Our records indicate that you need a refill of your prescription.

(Me Thinking: Yeah. Duh. It's already in my fridge no thanks to you guys)

CVS: If you have time and would like to speak to one of our customer service specialists, please say yes.

Me: Yes.

Ring. Ring. Ring. Ring. Ring. Ring. Ring. Ring. Ring. Ring. Ring. Ring.

CVS: We are unable to answer your call at this time. Please call us back later.

Click.

I'm sorry but you called me!!!! Wow. Just wow. So glad I've moved on from dealing with that particular form of pharmacy nonsense.

(P.S. Please enjoy the slightly unrelated picture of my son in the bath. I chose it because that's pretty much the face I made after CVS called me and then hung up on me)

Multi-Tasking

I am currently trying to get work done while also singing to the squirmy baby on my lap. Multi-tasking!!! I do have things I want to blog about but they will have to wait until I get my work done! (Though in the meantime I should probably take some basic notes about topics before my mommy-brain forgets everything I wanted to say...)

Everyday Victories

Sometimes it seems like RA soreness and fatigue can make even the smallest everyday activities seem like a huge mountain to climb. I recently made the New Year's resolution to make sure my first baby - my dog River - gets enough exercise. This means that every day I have to bundle up OZL, load him into the stroller, and get all of us out the door for a walk. And while sometimes this seems next to impossible I'm really doing my best to do it every single day.

Today we walked for a mile and a half. It's a little victory, but it got me and River some much-needed exercise and raised $1 for the Arthritis Foundation when I submitted it to Everyday Victories! If you have an "everyday victory" you should submit it too! For every victory submitted, UCB (a biopharma company) will donate $1 to the Arthritis Foundation until $30,000 is raised.

Bouncing In His Sleep

Submitted for your entertainment:

You Really Don't Make Me Feel Very Special

Dear CVS Specialty Pharmacy,

I hate you.

After you very nearly ruined my Christmas, somehow it is already time to call you again and request another refill of Enbrel. So here's how that went:

After pressing "4" for "Rheumatoid Arthritis," my call started out with 9 minutes (not an exaggeration) of crappy jazz music, interspersed with the occasional "your call is very important to us, please stay on the line" nonsense. 

Then the phone probably rang 20 times. I was about to hang up and try calling back when a very unenthusiastic employee finally picked up.

I said hello and told her that I would like to order a refill of my Enbrel. She asked for my last name, which I gave her and spelled. She asked for my first name, which I gave her and spelled. She asked for my birthday, which I gave her. She asked me to verify my mailing address, which I did. She told me to hold on.

It was at this point that OZL woke up from his nap and started screaming. I tried to finish my phone call before going to get him - we had to be almost finished, right?

Wrong. When she came back, she asked when I would like the shipment delivered. I said I would prefer tomorrow or Thursday. She asked if I had any medication left. I told her I did not. She asked when my next dose was supposed to occur. On the advice of one of my readers, I lied and said Friday (it's really Monday but I didn't feel like cutting it as close as last time.) 

Then she asked me to verify my mailing address. And I said, wait...didn't I just do that a minute ago? And she quite rudely said I hadn't. So, instead of arguing with her, I gave her my address again. And she went away again. 

When she finally came back she said I would receive it tomorrow. Then she hung up.

The whole interaction took almost 20 minutes. And I have to say that I'm not feeling very confident that my Enbrel will actually arrive tomorrow. 

Here's to hoping it actually comes this time. And here's to hoping I can find time this month to call my insurance and ask if I can switch back to Walgreens Specialty Pharmacy instead - because they sent me my Enbrel automatically every month with none of this nonsense.