Friday, August 27, 2010

Blood Pressure Battle

I have been fighting with my blood pressure for more than a year. Yesterday, the doctor made me bring a month of readings to her and she still determined that my blood pressure was a little too high. She also had me bring in my personal blood pressure machine to make sure it was properly calibrated. For some reason, this required them taking my blood pressure literally fifteen times on at least three different machines and manually. What an exhausting appointment! Conclusion? Still too high, never eat salt, exercise more, take more drugs, and come back in three weeks. ::sigh:: Why is health so exhausting?

Friday, August 20, 2010

Dr. Awesome!!

My rheumatologist and his nurses came through with three Enbrel auto-injectors to help me out! That means I have at least three weeks to get the paperwork and co-pay assistance figured out, which should totally be possible (KNOCK ON WOOD!!) They are the best!!!

Enbrel: Currently Less Help, More Headache

I'm still trying to figure out how to pay for the Enbrel after getting charged $750 last time we went to the pharmacy (an amount we can not afford once, let alone every month). After many hours on the phone, there is good news and there is bad news.

The good news is that school is starting next week. (Wait....I take that back. School starting is not good news! What happened to my summer?!?!) That means that my new year of health insurance has been activated, giving me a new $5,000 cap to cover at least 50% of my prescriptions. So that means that of the $1,600 cost of Enbrel, at least 50% will be covered the next time I pick it up.

The bad news is that, even with my insurance, that still leaves me with a co-pay of about $800 that we can't afford this month any more than we could afford it last month. Not to mention, based on last year, we now know that my $5,000 cap for prescriptions will be reached way before the end of the year, meaning I can look forward to being in this same pickle again next year. But I guess we'll cross that bridge when we come to it.

In the meantime, the other good news is that the people at Enbrel Support have been very helpful (aside from having to re-explain my problem to each person I talked to and having to wait  a while for the right person to call me back). I can't re-activate my Enbrel Support Card until October, because I already reached their $4,000 cap in this six month period. However, they found another program that I might qualify for to assist me with my ridiculously large co-pay in the meantime. They are sending me the application for the program, and they said they would call me next week to follow-up and make sure I didn't need any more help.

But the other bad news is they said it would take 7-10 business days for the application to arrive.  And then I'll need to fill it out, send it, and get approved. And, if approved, the program will help me pay  for future Enbrel but they won't reimburse. Which is problematic, considering that I don't have any more Enbrel and I'm supposed to take a shot tomorrow. If I have to go without Enbrel for a week or two until we get this straightened out, it probably won't be pretty. And the timing totally blows. Did I mention school is starting next week? Crap.

I've called my rheumatologist to see if they can help me get some Enbrel for the next week or two until I get the paperwork for the co-pay assistance straightened out. Even if they can't give me any I'll need to talk to them anyways - I'm sure I'll need a refill on some pain meds if I have to cold turkey off the Enbrel tomorrow. ::sigh::

Thursday, August 19, 2010


As long as my hands are hurting today anyways, I decided I just couldn't wait any longer to write about my wonderful recent visit to my cousin and her family in Ohio. 

I volunteered to go out east to help my good friend RK drive back to Boulder (In related news: OMG SO GLAD TO HAVE HER BACK HOME!!! YAY!!!). When I looked at our route between Pennsylvania and Colorado, I noticed that it pretty much passed right by my where my family lives in Ohio. It seemed a shame to be so close and not get to see my family, because I hadn't seen my cousin or my aunt in about five years, and I had never even met my cousin's two-year-old daughter. So, I talked RK into buying me a ticket to Ohio instead of Pennsylvania, and I went a few days early so I could spend some time with my family before RK picked me up for the long drive back to Colorado.

I really enjoyed my visit with my family. My cousin's two-year-old, little KF, was a delight. She was so adorable and so loving. She had me wrapped around her little finger less than a minute after I walked in the door. I'm so excited that I got a chance to get to know her and spend some time with her. We played with all her toys. We went shopping for new shoes - because this little girl loves shoes already!! (Why are baby shoes so adorable???) We played at Gymboree. We went to the park and fed the ducks. She shared her pretzel snacks with me. She painted me an ice cream cone (which is now hanging on my fridge) at playgroup. Little KF's smile was infectious - it made me happy just to be with her.

It was also really nice for me to get to spend some time with my cousin, KF. She is my mom's sister's daughter and just a few years older than me - which makes her like the big sister I never had. And, like any good big sister, she can certainly give me a hard time! (When I was 3 she told me she was going to steal my legs and I totally believed her!) But she can also give me a lot of good advice. We spent several days talking about life, jobs, motherhood, relationships, and RA, as KF was diagnosed about a year before I was. She has been a huge support for me (mostly via email and care packages) since my diagnosis two years ago. So I was really happy to get to actually spend some time with her.

KF hasn't got it all figured out yet either, and her life certainly isn't perfect, but she did give me a lot of hope. She's raising her daughter and working part time. And, despite pain in her hands, she has her own crochet project, The Itsy Bitsy Spider, where she makes the most adorable toys. And her lovely husband even offered to watch little KF one evening so that KF and I could have a girls night out - we got our nails done and drank wine on the patio and it was lovely!

It was also really nice to get to know KF's husband a bit better, and it was fun to watch my Aunt and Uncle interact with little KF. Talk about melting your heart - Nana and Pappap sure love that little girl! I'm really grateful that I got this opportunity to visit with my family and learn from my cousin (a.k.a. adopted big sister). I hope I get to see them all again sooner rather than later!!

Give Yourself A Hand

Hands are amazing. They do so many things for us, every single day, and most of their work is totally unnoticed by us.

Honestly, I never really thought about it myself until my hands started hurting. Even then, I still thought that I do most things with my dominant left hand. I didn't think having a painful right hand, which is my weaker hand, would make a huge difference.

Today I discovered I was wrong. Apparently my right had does a lot for me every day. Here is a list of just some of the things that my "weak" right hand did for me today:
  • typing
  • moving the mouse
  • clicking on the track pad on my laptop
  • texting
  • opening the fridge
  • opening and closing the tupperware
  • popping the top of the milk
  • holding the glass while pouring
  • pulling up my pants
  • pulling down my shirt
  • putting my shoes on
  • putting my hair in a ponytail
  • turning the key in the ignition of the car
  • steering the car
  • moving the gear shift in the car
  • taking the parking break off
  • pressing the button to release my seatbelt
  • changing the song on my iPod
  • unzipping my purse
  • opening a soda can
  • pressing the buttons on the microwave
  • holding the phone to my ear
  • opening the back gate with the sticky handle
  • turning lights on or off
Unfortunately, I realized how much my right hand does for me by having extreme pain in my hand and thumb today. It hurt to do everything on that list, and many more things that used both hands equally. (My really hands hurt today!!!!)

In any event, the moral of the story is this: please be grateful for your hands and take good care of them. They do so much for you and things would be much more difficult without them.

Wednesday, August 18, 2010


Current form of employment: editing a 700 page book.

Conundrum: How am I supposed to make any progress on editing when my hands hurt too much to use the computer for more than ten minutes at a time???

Stupid hands. They're making everything I do hurt.

Also, school starts again next week.


Monday, August 16, 2010

"Autoimmune" is a Dirty Word

I really want to write about my awesome trip to visit my cousin and her family (and meet her 2 year old daughter for the first time!!) but my hands are totally killing me today, so that post will have to wait.

In the meantime, I just got back from the vet because River has a swollen nose. Hopefully it's just a scratch or a bug bite or something that will go away soon and never ever happen again. But the vet also said we have to be aware that it might be the first signs of an autoimmune disease that affects mucus membranes in dogs. Then the vet started to explain what an autoimmune disease was and I had to tell him that "autoimmune" is already a dirty word in our house.

We're keeping our fingers crossed that River's nose gets better and stays that way. Or I would be, if my stupid fingers didn't hurt so much....