#Medicare Monday


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Nothing scares someone with a chronic illness more than changes in health insurance. So I have to admit that I’m terrified.

Today I start Medicare. 

This doesn’t sneak up on you. About six months before you’re eligible, you start getting mail and emails and phone calls from insurance companies trying to get you to sign up for all the supplemental policies that come along with the government-provided coverage. But sorting it all out, trying to figure out what you’ve got and what’s going to be covered, is a bit of a nightmare.

I take about a dozen prescription medications, not counting my biologic infusion. I searched carefully through the 25 or so prescription plans available to me until I found one that covered most of these meds for a premium that wouldn’t bankrupt me (at least not immediately).  As it was, I couldn’t find a plan that covered two of my drugs. One is a blood pressure medication, which is no big deal because there are loads of those. The other is the one that I consider critical because it provides amazing relief for my Sjogren’s symptoms. There is only one substitute that I can find and it doesn’t work as well and it has considerably more side effects. And even though it’s “covered”, it will still cost me more than $100/month.

The really scary part is that I can’t get anyone to tell me whether or not my biologic infusions are covered. I’ve talked to Medicare and they tell me that the fees for giving the infusion will be covered, but they won’t tell me if the drug (which runs about $15,000 retail) is covered. They need to speak to my doctor or the infusion company or both. Even if it is “covered”, if it’s a high-tier drug, it might only be covered at something like 50% — which is well beyond my capability to afford.

Right now I’m doing better than I have in years. My biologic, Simponi Aria (along with methotrexate), is working amazingly. I do not want to go backward. I would like to continue to feel almost human again.

I’ve been given assurances by a wide range of people including my rheumatologist, the infusion company, and even the great folks at Janssen (who manufacture the drug), that it should/will be covered. But I won’t know probably until a few days before my next infusion in June.


The interesting thing is that I consider myself lucky. Given the current uncertainty in the health insurance industry and the chaos that is going on in our legislature about replacing Obamacare, I’m glad I don’t have to face those challenges. At least I have a clear definition of what I’m facing.

I hope whatever you’re facing today brings a smile to you and those you love. Thanks for checking in.


Amazing Study on Expressive Writing – Thanks Galloping Grandma!

I want to thank thegallopinggrandma.wordpress.com for this intriguing story about the healing power of expressive writing.

Whilst lying dozing in my bed at the end of my day listening to the radio (because of the effort of watching television at that time of night ) I was suddenly aware of the mention of Rheumatoid Disease on a BBC programme called “All in The Mind”, so dragged myself into a sitting […]





This time last week I had the great privilege of being part of the opening session of HealtheVoices 17. This was the third year that Janssen has sponsored the convergence of online health advocates that represent a wide variety chronic illnesses.

There are times that I think my blog actually does some good (rather than just being a conversation with myself). But I was truly amazed at all the incredible work done by the 105 advocates who attended the conference. There were people with radio shows and podcasts and videos and who head up non-profits and speak before congress and sit on peer review panels for medical trials. The list goes on.

But the important thing is that this conference helps empower those who work daily to make the patient’s voice heard in the health care industry.

With all the important issues facing our nation today, none (IMHO) is more important than health care because everyone is touched by it. And like the canary in the mine shaft, those of us with a chronic illness are impacted the earliest and the most when changes in healthcare occur. We need to initiate the conversation about how proposed changes affect the quality and even the quantity of patients’ lives.

I’m in here, really.

I was very honored to be selected to attend and to gain so much knowledge and energy from both the other attendees as well as the amazing sessions I attended. But this is just a small handful of people and the American healthcare system is huge. We all need to make our voices heard, however we can in whatever manner works for us as individuals.

Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

Happy Anniversary

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.