As a communicator I am in awe of how words define us personally and our world as a whole. The four words, “You have rheumatoid arthritis” are life changing. Read the full story here: https://rheumatoidarthritis.net/living/four-words-change-everything/
After almost a decade of dealing with RA, I thought I’d run across almost everything at least once. A recent infection proved me wrong.
Read the full story here: https://rheumatoidarthritis.net/living/surprising-complications-of-an-infection/
Today is my 21st wedding anniversary. I printed the story of “how we met” in December 2014. In celebration of being married this long, I hope you’ll indulge my sharing it again.
I met my husband in the Houston Hobby airport in December 1993. We had both been in Houston on business and on the same flight back to Dallas, which was delayed. We got to chatting as people in airports do, exchanged business cards, and said we should get together for drinks sometime in the new year. He was married, I was married, and even though both marriages were in trouble, nothing came of the “get together for drinks” (or anything else).
Fast forward a year later to December 1994. By then my marriage had disintegrated and I was living on my own. I was addressing Christmas cards and ran across his business card. I sent him a card that wished him well and reminded him that he’d promised me a drink in 1994 and while I was a patient person, the year was about over. As it turned out, he was also on his own and he promptly reached out to make a date for that drink.
We tried several times, but it was a crazy time for me with project deadlines and all-night press checks so I kept having to reschedule. Finally I told him that we’d just have to make it sometime in January.
Then on New Year’s Eve afternoon he called and said he was determined to keep his promise and asked that I meet him at a local dive for oysters and beer. I had nothing else going on and I was secretly pleased by his perseverance. So we had our official first date on New Year’s Eve afternoon in 1994 — more than a year after we had met.
1995 was pretty tumultuous. We dated. I got mad and threw him out of my life (three times). I took a job based in Omaha but which had me traveling every week anywhere from Florida to California. He was starting his own architectural practice. It was nuts. We finally both formally ended our marriages that year. We wound up on the same divorce court docket on the same day and carpooled together to the courthouse to get divorced together. (When we later got married the clerk thought we’d previously been married to each other because our divorce dates were the same.)
Finally in 1996 I said yes. For various reasons we picked a weekend in April and a trip to Las Vegas for the wedding. We had no money so we flew to Las Vegas on Southwest Airlines. This was during the time when Southwest used plastic, numbered boarding passes. We had numbers 19 and 20. We were going to be in Las Vegas the 19th and 20th of April and couldn’t decide which day we wanted to get married. My (soon-to-be) husband put the boarding passes behind his back, I picked the hand that had #19 in it, so we were married on the 19th of April.
As much as we still love each other, we stay together for the good of the world. It seems that our marriage is connected to some very critical dates in recent history. Our mutual divorces were final on 9/11 (1995). April 19th, our anniversary, is also associated with the Bay of Pigs, the Oklahoma City bombing and the Branch Davidian compound event. We figure if we ever get divorced, the world might actually end.
But regardless, every year since our first official date, we’ve gone back to the same dive and had oysters and beer on New Year’s Eve day. Counting our first date, this year makes 21 years in a row. It marks 19 years of marriage and the start of another year of adventure. It’s great being married to your best friend and partner in crime. He’s been through a lot with my RA and I give thanks every day that he’s there.
So that’s the story and how I’m spending my New Year’s. Tomorrow’s another year, another dozen oysters and some cold Miller Lite.
Hope that 2015 treats us all with kindness and health. Thanks for checking in.
There have been a lot of great advances in medicine in the last few decades, including exciting developments in the treatment of RA. To me, one of the best changes is that patient voices are being heard. I think part of this is that there is so much quality information available at the patient level and that this empowers us to be a more proactive partner in our health care. Studies such as the one on PASS provide the added clinical evidence that our voices are valid.
Read the rest of the article here: https://rheumatoidarthritis.net/living/patient-assessment-used-as-a-clinical-objective-really/
On Thursday, April 13 at 7 pm ET, Megan Starshak (@TheGreatBM) and Keri Ann Flaccomio (@keriannecdotes) will host the first #FinelyTuned Twitter chat, “Being Your Own Advocate in Treatment Decisions,” with special guest Aimed Alliance (@aimedalliance), a non-profit organization committed to improving access and transparency around quality, patient-centered health care. To participate in the conversation that evening, all you have to do is follow the #FinelyTuned hashtag on Twitter.
It seems that having a chronic disease comes with a hearty side dish of guilt — for not being able to do things, having to cancel activities, or otherwise disappointing those around us. You need to give yourself permission to do the things you need to do and NOT do the things you are unable to.
Read the full article here: https://rheumatoidarthritis.net/living/give-yourself-permission/
Mobile technology seems to have revolutionized our lives and certainly medical apps are some of the most popular. RheumatologyNetwork.com has reviewed the top 19 apps for tracking RA symptoms. (The slideshow rating each app is here: http://www.rheumatologynetwork.com/rheumatoid-arthritis/review-ra-mobile-apps-meeting-some-needs-missing-mark-others and the related story/synopsis is here: http://www.rheumatologynetwork.com/rheumatoid-arthritis/ra-mobile-apps-meeting-some-needs-missing-mark-others?GUID=1F23207F-2112-4CD6-9E2A-6B74F5025767&rememberme=1&ts=04042017.)
The review included two broad areas. The first, predictably, was what disease activity could be tracked/assessed. The other was the Mobile App Rating Scale (MARS) which includes engagement, functionality, aesthetics and information quality — basically how the user interacts with the app.
I applaud the availability of these apps partly because RA is so unpredictable that it is great to have something at hand with which to track what’s going on and then be able to discuss this information at a later date with your doctor. One of my favorites, Creaky Joint’s (www.creakyjoints.org) Arthritis Power, was the only one that included both ACR and EULAR laboratory measures.
That being said, there appears to be room for improvement on all of the apps, but there are some great contenders to help us on a daily basis. I should note that this is a New Zealand study, but all the apps are available in the US.
I encourage you to view the slideshow or read the story (or both). However, here is a synopsis excerpted from the article:
- 14 apps included at least one validated instrument measuring RA disease activity.
- 11 apps allowed users to enter a joint count and seven of these used the standard 28 swollen and tender joint count.
- 8 apps included at least one ACR and EULAR-recommended RA composite disease activity (CDA) measure.
- 10 apps included data storage and retrieval.
- Only 1 app, Arthritis Power, included both an RA CDA measure and tracked data, but this app did not include the standard 28 tender and swollen joint count.
- The median overall MARS score for apps was 3.41/5. Of the six apps that scored at least four out of five on the overall MARS rating, only one included a CDA score endorsed by ACR and EULAR, but this app did not have a data tracking function.
I hope that however you track your RA activity, that it too low to track today. Thanks for checking in.