Friday, July 23, 2010

Who Spends $15,000 A Year on Medicine? I DO!

Yesterday, APL went to pick up my Enbrel and some other prescriptions on his lunch hour, because he is the sweetest ever! But when he got there, the pharmacy charged him $750 for the Enbrel. Yes, you read that right, $750. That one prescription cost more than our monthly car payment and HOA fees combined. It's enough for me to buy an amazing wedding dress or, apparently, get stabbed 4 times by a needle. I just spent three hours on the phone with various insurance agents trying to figure out why the Enbrel was suddenly so expensive. 

I mean, didn't I already pay for health insurance? I did. And my plan from Aetna should cover 50% of my prescriptions. However, it only covers up to $5,000 per policy year on prescriptions. Apparently I have already reached that cap. So the health insurance is no help.

But aren't there support programs to help pay for expensive drugs like Enbrel? There are. The Enbrel Support Program offers 6 months of Enbrel at no cost and then $10 or less out-of-pocket per month thereafter. Until you hit their cap of $4,000 per six months. Which I have already hit. Twice. 

So: I now have zero prescription coverage until school starts again. And not just for Enbrel, but for all of the other 459 prescriptions I take every day. (Ok, ok. More like seven. But still!!) I'll have to pay full price for all of them.

Including Enbrel. And, believe it or not, the $750 APL paid yesterday was after what was left of my support had already been applied. Which means that next time I go to pick up Enbrel, they'll charge $1,600. Awesome.

You know what else this means? I hit a $5,000 cap and two $4,000 caps and I have paid hundreds of dollars of co-payments to the pharmacy myself. This means that I have spent more than $10,000 on medicine in less than a year!! In fact, the total is closer to $15,000. You could by an entire car for that amount. Or a whole wedding. HOW DO DRUGS POSSIBLY COST THAT MUCH?!?! 

And how will we ever pay for it all?

Wednesday, July 21, 2010

Am Not Adult

I spend a lot of time taking care of my body. 

In the past two years that I have been writing this blog, I have been to at least SIXTY-SIX health-related appointments!! Oh yes, I actually counted. And that's just the ones I mentioned in this blog!

That means I could have had an appointment every single day in a row for more than two months!!! Or once a week for more than a year!!!  Rheumatologists. Doctors. Nurses. Psychologists. Therapists. Physical Therapists. Massage Therapists. IV infusions. X-Rays. Blood Tests.

But you know what kind of doctor you don't see on that list? The dentist.  A few weeks ago I realized, though I have been paying super close attention to my body and being really responsible about doctors appointments, I hadn't been to the dentist in more than two years.

Thus: am not adult. Being a grown-up is hard. 

In any event, two weeks ago I had my teeth cleaned for the first time in two years. And (surprise, surprise) they found three cavities. Plus two old fillings that needed to be repaired. For a total of five (see supra, am not adult).

At about this point, I discovered yet another way that RA has changed my life. Ordinarily, I would have sucked it up and gotten all those fillings done on the same day at the same time. I had head gear, braces, and massive orthodontic work as a kid. Get that stuff overwith!! 

But, when I went today, my jaw (which is a joint, remember?) only made it through two fillings. Even though the dentist was super nice about giving me a chance to rest my jaw,  and letting me use one of those bite blockers for support, I was nearly crying by the time the two fillings were done because of the pain in my jaw. The pain is still making me feel a bit nauseous right now, actually. 

This all comes with the added benefit of getting to go back and do the other three next week. Yet another health-related appointment and some more scheduled jaw pain. Thanks, RA.

I Miss Favorite Lab Man

Guess what happens when Favorite Lab Man is not at work when I go to get my bloodwork done?

(a) Nurse #1 stabs me, fails to get the vein, wiggles the needle around  for several minutes looking for it, finally finds it, but is still unable to fill a whole test tube of blood.

(b) Nurse #2 comes in, fails to find a vein on my other arm, stabs me for the second time in the same arm, but luckily is able to fill a whole test tube of blood this time.

(c) I end up looking like a drug addict.

(d) All of the above.

Thank God it was simple bloodwork that only required one tube of blood. I'm pretty sure those two nurses would have stabbed me dry if they had needed several tubes of blood.

Favorite Lab Man: please send me your work schedule. I don't think I can handle anyone but you taking my blood anymore.

Monday, July 19, 2010

Lipstick, Perfume and Too Many Pills

I have been awarded One Lovely Blog Award, and Nessie said the sweetest thing about this blog:
"Mariah at From This Point. Forward. gets it so spot on all the time that I sometimes feel I should just post links to her blog and call it a night. That’s how awesome she is."
It made me really happy to know that while I use this blog to  try to figure out my own complicated feelings/issues, there are others out there who actually understand what I am going through! It's also good to remember that I'm not alone and that maybe I can help people by talking openly about my RA on this blog.

I am supposed to pass this blog award along, but Nessie already caught most of my favorites in her award list!! Including Helen at Pens & Needles, Skye at Struck at 21 with RA; Coping With It, and Jodi and her Auto Immune Portrait Project. (Jodi and her portrait project, by the way, were recently featured in Arthritis Today, which is very awesome, especially because I think Arthritis Today needs to do a better job of differentiating between OA and RA and recognizing the added difficulties that RA presents). The rest of Nessie's list is probably worth reading too!  In any event, since Nessie's list is so good, instead of passing this award along I'm going to pass it right back to Nessie!! (There are no rules on the interwebs!!! I can do what I want!!!) 

Nessie's blog is called lipstick, perfume and too many pills. I've just started reading it and it is wonderfully written and very insightful. I absolutely love the tagline: "a sick girl's quest for normalcy." Yes! Normal would be very good!! Nessie doesn't have RA, but instead suffers from psoriatic arthritis, often referred to as PSA. However, the treatment of PSA is often similar to treating RA, and from starting to read her blog I can see that she deals with many of the same chronic illness issues that I do.  So I will certainly be following her blog from this point forward!!

Tuesday, July 13, 2010


I just returned from a fantastic week in Seattle with my sister. I love my sister, and I can't even begin to explain how much I wish we lived closer to each other so we could spend more time together. Someday I hope we can.

When I arrived in Seattle my mom was there visiting too, so we got to have several really fun (and for me much-needed!) girls' days together. We went to lunch and happy hour. We took walks. They even took me to start trying on wedding dresses! I was actually sort of nervous about it, because I am generally not very good at shopping and I was concerned about my stamina for trying on lots of complicated dresses and standing up all day. But my mom and sister did everything they could to make it easy for me and I actually surprised myself. It was really fun and exciting and made the wedding seem even more real! (Holy crap, I'm getting married!) We were also very silly and we laughed harder than I can remember laughing in a long, long time. 

Then, because we had so much fun when my sister and her boyfriend came to Boulder to visit us, APL came to Seattle for the weekend so the four of us could hang out together. We walked around Pike's Place Market and the Space Needle downtown, though that walk took a bit of a toll on me. We spent the afternoon picnicking and swimming in the lake. We watched the World Cup Finals. We drank local beer and generally just really enjoyed ourselves. The visit was too short!! And I already miss my sister!!

As always after travel, I felt really quite beat up yesterday. (Though I did go to pilates anyways!) I am worn out from having such a good and exciting week in Seattle and I know I need to rest. But for some reason I can't seem to sleep. Right now it's 6:00am and I have been awake since 3:30am.  It seems almost impossible to be so exhausted and not be able to sleep, but it's happening to me at this moment. And I'm not sure how to fix this problem, because if I sleep during the day today I won't be able to fall asleep tonight. 

But, law school is over and class for my Masters doesn't start until the end of August. I've got a research project to work on, but I don't have any immediately pending deadlines. I guess I've got some time to try to figure my sleep problem out. 

Sunday, July 4, 2010

Everything Looks Better in the Morning

River woke me up with kisses this morning. APL is making breakfast.

I feel better already.

Technical Juris Doctorate

It's 2am. I'm exhausted, but I can't seem to sleep. My thoughts keep going round and round.

Yesterday, I took my last law exam ever and I technically earned my J.D. Even though I won't actually get the J.D. until I finish my dual degree program in December, the J.D. is completed. It is earned. I am  technically a Juris Doctor. 

Law school is hard all by itself. Really hard. And finishing law school after getting diagnosed with RA halfway through, while simultaneously trying to learn how to live with RA, was absolutely the hardest thing I have ever done in my life. And I didn't just do it - I did it well. I will graduate ranked in the top third of the class, with a publication that was awarded "Best 2L Note," and four merit scholarships under my belt.

But the thought that keeps going around and around in my head is this: was it worth what it cost?

Yesterday I took my last exam and finished law school. I went home. I spent the afternoon alone, doing laundry.  A couple of people "liked" my Facebook status about finishing law school. APL said he was really proud of me and asked if I wanted to go out to dinner. But there was no one to go out to dinner with. So he brought home some sushi and that was the extent of our celebration for me completing the hardest thing I've ever done in my life. I may have a J.D., but I expended so much energy on it after I got sick that I guess I no longer have any friends in Boulder to celebrate it with.

I want to make it clear that I'm not fishing for retroactive congratulations or sympathy. And I'm perfectly aware that I'm overreacting and just feeling sorry for myself. And tomorrow I'm totally going to stop feeling sorry for myself and get back to my life and just do the best I can. But, before I do, I'm just trying to understand the really weird feelings I've had since yesterday.

I really expected to feel relieved when I finished my last exam. I expected to feel excited and proud that I had accomplished something so difficult despite the setbacks with my health. I expected to feel jubilant

But I didn't. I just felt sort of...empty. 

I've been slogging uphill towards this goal for so long that I never really thought about what it would be like when I got to the top. But deep down I guess I thought that my life would instantly be better when I finished law school, as if I could blame law school for all the things that I don't like about my life right now. Like it was totally law school's fault that I have no one to hang out with in Boulder and I'm a little overweight and my health is still a mess. Which is actually still at least partly true. But I guess I expected to feel the benefits of being done as soon as I was actually done.

Instead, it looks like it's going to take some more work to put my life back on track. And thinking about that sort of thing will keep you up at night. 

Thursday, July 1, 2010

Credit for APL

I keep trying to get people to understand that my diagnosis of RA has affected APL's life just as much as it has affected mine. I know that isn't particularly easy to comprehend, seeing as I'm the one with the pain and the immune system that's going berserk. I'm the one needing to go to the doctor or stab myself with a needle or take 19 medications every four minutes. 

But APL has been there too, holding my hand, every single step of the way. Even though the RA is actually happening in my body, APL and I had a life and a future that changed dramatically with that diagnosis, and it has been equally difficult for APL to adjust to our new life as it has been for me. In some ways, I think it has even been harder for him. I mean, APL is helping me, but who is helping APL? I try, but sometimes I just can't.

Recently, at the Annual Congress of the European League Against Rheumatism (EULAR), a study was presented that had the same conclusion: partners grieve the RA diagnosis as much as the patients. (I found this study through a post on RA Warrior.)

My point being this: APL deserves a lot of credit, not only for helping me get through this, but also for getting through it himself. He is simply amazing and I am so lucky.