September shenanigans

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Sometimes I really don’t know what to write about…and sometimes I think that the details of my life will bore you if I don’t have a lot to say about RA. It’s crazy how I compartmentalize. I rarely talk to the people I see on a daily basis about RA, yet I feel weird writing on my blog about anything unrelated.

I’ve decided though that living with RA makes all events relevant, especially when I’m feeling good. So here’s the skinny on what I’m up to right now!

A few weeks ago, I went to Washington DC to participate in the ACR’s Capitol Hill Fly in. For those of you unfamiliar, this is a yearly advocacy event that pairs doctors and patients together to meet with lawmakers to discuss policy that affects our community. We talked a TON about access to care, access to treatments and medications among other topics. I had a GREAT team and it was a lot of fun!

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The funniest part? They called our team up to role play a meeting with a real live actual Senator. Did we know this was going to happen? Nope. While speaking about access to treatments/medications, I stated that due to Tier 4 pricing, my biologic medication is $700 per month. The senator frowned and said ‘that’s $8,000 a year.’ I smiled and said ‘actually, it’s $8,400.’

Many thanks to whatever spirit chose to inhabit me at that moment and do accurate math! On the spot! In front of people!

That will most likely never happen again! But I felt very smart. Yay for successful basic multiplication skills.

Next up, I just started xeljanz. I am a month in and quite pleased thus far. I realized last week that things that used to always have a dull ache no longer do. Plus, I am psyched to no longer have to give myself shots. Even though I’ve done it for years, I’m by no means a nurse and have bruised the heck out of myself many, many times.

This past weekend, my much better ankle cooperated and allowed me to visit Greenville, SC. Ok, it would’ve let me visit either way but I walked all around town with no issue. I saw several old friends and got to see my cousin perform in the Broadway tour of Once! If you’re thinking about going, I highly recommend. Very well done show!

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And that’s the highlight reel! Oh yeah, and I turned 35 a few weeks ago. (Ugh)

Up next: how I’ve fallen off the fitness wagon since moving and how I’ll be jumping back in!

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6 responses »

  1. Glad to see you posting again! It has been a little while.
    And uggh… about the cost of biologics! It’s enough to drive you mad! Glad you pointed that out. I don’t think people realize the enormous cost of medications!

    • Hello all flared up. I love how different people use their different personalities and talents to motivate others and navigate through this disease. Your story is one of determination and I look forward to meeting you in Boston! All the best, Tina Wesson

  2. Hi. I really enjoy reading your blog. I am just starting to connect with others after being diagnosed in 2007. I was on Orencia for a year in 2009- 2010, and did very well. It was easy to go once a month for an infusion and it actually put me into remission. Then I got laid off. I lost my insurance, and I was aching to try another career. For years, I wanted to be a massage therapist, or energy healer. Massage was the way to go at first. But so many things happened. I just stopped my infusions. I was so stressed out, and I was on the WRONG path! But I learned so much, and I’m currently trying to not be so down about that choice. I did massage for a year, and made an OK living, but not at all what I had expected. I think I need to heal from that, and I am not sure where to begin except to share..

    I have an office job that I like now, and have gotten benefits that cover the biologics which are SOO expensive..I am going to try Orencia shots. I felt so much better when I had Orencia. I hope it will work. Thank you for sharing your life with RA. It can be very lonely and difficult for other people to understand. I never knew this until I started to feel really sick.

    Do you have any advice on how to deal with sharing this part of me with others- work, new friends, etc.?

    • I would say, based on experience, start sharing as slowly or quickly as your comfort level allows. I didn’t share at all for awhile, but also didn’t realize that my friends could tell that something was up. Not sharing on my part was detrimental to some relationships…so I’d say share what you’re comfortable with and you can always give them more info later! If they’re good friends, they’ll understand the trickle in of information!

      • Thank you. Great advice! I don’t know why it has taken me so long to come to terms with this condition. Maybe I was in a sort of denial in the very beginning as my symptoms were somewhat mild, but the last 4 years have been increasingly worse, though my Vectra test was right on the border between mild and moderate. I am also not on a special diet but am very seriously giving up grains as I can..not sugar though..:) Some things I just have to keep for now!

      • I totally understand! I wasn’t ok with sharing it with others until I was ok with it myself. That took quite awhile. It took me several years too, I don’t think it’s possible to be fine with a diagnosis with lifelong implications from the get go! I also noticed that if I talk about it and make it no big deal-it’s just something I deal with- I’m less likely to have a big deal made of it. I was really concerned that they’d think of me as disabled or something like that…but in being very specific in how I presented it, I could also somewhat control the reaction to it. Nowawadays, I let them now that I have joint pain and some fatigue issues but also tell them that a) it doesn’t affect who I am as a person and b) ask me questions vs googling it for accurate information, it’s a much better outcome.

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