The story …

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.

The Insurance Trap



December brings a lot of milestones including the Christmas and Hanukah holidays, the Winter Solstice, and New Year’s Eve with its endless “Best Of” lists and unrealistic resolutions for the coming year. Equally ubiquitous are deadlines for making commitments for the coming year’s health insurance. Whether you’re covered by your company’s insurance (I’m not), purchasing health insurance on your own (that’s me), or by Medicare, you have to make important decisions that will impact both your health and your pocketbook for the next 12 months.

Read the rest of the post here:

The 12th Day of RA (Reprise)



As it’s now only a few days until Christmas, I thought I’d reprise last year’s post (to be sung, hummed, or laughed at to the tune of “Twelve Days of Christmas”).

On the twelfth day of Christmas, RA brought to me:

12 joints a-flaring,

11 scripts a-filling,

10 toes a-throbbing,

9 labs a-drawing,

8 workdays missing,

7 doctors billing,

6 X-rays to be taken,

5 new pills,

4 side effects,

3 new tests,

2 swollen knees,

And a new D-M-A-R-D.

“And God bless us, every one.” Tim Cratchit, A Christmas Carol by Charles Dickens

Kineret, anyone?


So while I’m waiting for the insurance paperwork to trickle through the system I’m doing additional research on my new drug of choice, Kineret. Of course I’ve read all the “official” stuff on the Kineret website, the NIH website, Web MD,, the Mayo Clinic, etc. which basically all regurgitate the same information.

What I’m having trouble finding are actual patient experiences (blogs) with Kineret, especially for RA. I’ve found a few reviews and incidental information, particularly for its use with Still Disease and other conditions, but not much that I can find from those living with RA.

So please consider this a call for information/input. If you currently use or have used Kineret for your RA, I would appreciate a comment/response to this post. If you don’t want to post publicly, you can email me at

I appreciate everyone’s help.

Where I am, how I got here and what’s next


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I was diagnosed with RA in July 2008. It’s been a pretty rocky six and a half years since then. In all, I’ve had nine surgeries since my diagnosis including three joint replacements, a revision to the shoulder replacement, two rotator cuff surgeries, two knee arthroscopies, and a disc removal and spinal fusion. My home furnishings have expanded to include grab bars in the bathroom, my own rolling hospital tray table, and a continuous cold therapy system.

My New Year’s resolution this year was to stay out of the operating room and, unless you count my SI joint injection which included anesthesia, I’ve made it so far.

Needless to say, my RA has not always been well controlled during this journey. I’ve systematically worked my way through most of the biologics on the market as follows:

Drug Type Start Stop
Methotrexate 35 mg DMARD 7/12/2008 9/15/2008
Humira TNF Blocker 1/15/2009 8/12/2009
Simponi TNF Blocker 8/12/2009 12/9/2009
Enbrel TNF Blocker 12/9/2009 4/18/2011
Enbrel + 10 mg leflunomide TNF Blocker/DMARD 4/18/2011 2/1/2012
Orencia + 10 mg leflunomide T-Cell/DMARD 2/1/2012 10/16/2013
Cimzia + 20 mg leflunomide TNF Blocker/DMARD 10/16/2013 3/19/2014
Xeljanz + 20 mg leflunomide JAK Inhibitor/DMARD 3/19/2014 8/28/2014
Remicade + 20 mg leflunomide TNF Blocker/DMARD 8/28/2014 Present

I’ve only been on my most recent medication, Remicade, since August. You start with three loading doses/infusions. After my second loading dose wasn’t producing the desired results, my rheumatologist increased the dosage. Then after my first “regular” infusion, she increased it again. She said she wasn’t going to increase it a third time.

So after more than three months of feeling like I was pouring the $16,000 per infusion down the drain, I saw my rheumatologist this week. We agreed that we needed yet another change. There are only three current biologics that I haven’t been on: Actemra, Kineret, and Rituxan. She suggested Kineret. Who am I to argue? It’s one of the original biologics so its effectiveness and safety record is well established. And it’s not a TNF-blocker which five of my “failed” medications were.

I have hope.

The bad news (at least to me)? It’s a daily injection. (Yuk.) I’m not looking forward to that. In addition, there is a high incidence of injection-site reaction (ISR) and, given the daily injection, there’s not a lot of time for recovery before the next injection is due, although evidence suggests that these become less severe and/or disappear after about four weeks (that’s 28 injections).

Kineret also contains citric acid which means that the injection stings. Every day. I don’t think you ever adapt to that. And since it has to be refrigerated (and it’s a daily injection), I have to figure out how to travel with it. I used to be able to figure out my travel and medication schedule to avoid the situation, but with a daily injection, there’s not much choice. The bit of silver lining in this cloud is that it comes in a latex-free, prefilled syringe with a tiny needle. The needle is a 27 gauge for those of you who appreciate those things (and I do).

I know a lot of people need to take injections every day (insulin-dependent diabetics come to mind). Instead of being such a whiny baby, I should be grateful that I have choices in medicines and a rheumatologist that is willing to recognize when a treatment plan isn’t working and to suggest alternatives.

I am. Both. (A whiny baby and grateful.)

We still have to go through the insurance approval dance and all the paperwork. Once I get started on it, I’ll certainly update the blog with my experience.

So that’s where I am at the moment, how I came to be here, and what’s next on the agenda.

Hope that wherever you’re going, however you’re getting there, and whatever comes next in your life brings you many blessings.

Thanks for checking in.

Congrats are in order!



Wow. For the fourth year in a row, Healthline has included me in their Best Health-Related Blogs along with some of my other favorite bloggers. It’s actually a contest where you can vote (twice a day) on Facebook and/or Twitter. (This means I can’t vote for myself or my other faves because I neither tweet nor, uh, “Face” — or is it “book”?)

Here’s a link to the site where you can check it out. You can sort the entries by alphabet or enter the name of the blog you’re looking for. In the unlikely event that I should win, the $$$ will go to one of the very deserving charities that Andrew Lumpe has identified on his “Giving Tuesday” post.

Congratulations to all the bloggers that were recognized. There are some great ones on a wide range of health-related topics. You should explore them!

Thanks for checking in.

Busy times


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Wow. This post is going to be all over the map (literally) as a lot has happened since my last post.

First, I had the major honor to be invited (and attend) Creaky Joint’s Joint Decision Empowerment Summit in Boston which brought together some of my favorite bloggers, members of the Creaky Joint team, and supporters from Jansenn Biotech, Inc. (who also sponsored my travel arrangements for the trip). The bloggers included:

  • Angela Lundberg—Inflamed: Living with Rheumatoid Arthritis
  • Amanda John—All Flared Up
  • Cathy Kramer—The Life and Adventures of Catepoo
  • Leslie Vandever—RheumaBlog
  • Dina Neils—The Titanium Triathlete
  • Leslie Rott—Getting Closer to Myself
  • Mariah Leach—From This Point. Forward.
  • Eduardo Flores—Rheumatoid Arthritis Guy
  • Rachelle Crow-Hercher—Spoonless Mama
  • Brittany Johnson—The Hurt Blogger

If you aren’t familiar with these amazing people, you should check out their blogs. Their perspectives, wisdom, and insights about life with RA are certainly worth your time.

There was a lot of laughter and a lot of tears but mainly there was a determination not to let RA beat us and lots of brainstorming about what kind of education/information needs to be made available to those living with RA. (One of the most powerful statements I heard was from RA Guy who eschews labels and said, “When I’m in the doctor’s office I may be a patient, but otherwise I’m someone who lives with RA.”)

Immediately upon my return from Boston, I had my Remicade infusion. This is the first one after the three loading doses. After the first two loading doses, my rheumatologist raised the dosage from 6 mg/kg to 7 mg/kg because the lower dosage wasn’t being effective. When she stopped in during this infusion we discussed the fact that the Remicade still didn’t seem to be working even at the higher level, so she increased the dosage again to 8 mg/kg. She said she wouldn’t go to 9 mg/kg. I really can’t tell any improvement so we may be switching treatment options yet again. (Sigh.) I’m running out of options. I see her again in the middle of December and we’ll make a decision then.

I also finally got to see the pain doctor about my compressed SI joint. (Let me tell you, traveling with that condition is not the most fun I’ve ever had.) He agreed with the assessment from my orthopedic surgeon and my neurosurgeon that an injection in the joint would be a logical place to start. If the injection worked for the pain, then the culprit was, indeed, the SI joint. Otherwise, we might need to investigate other potential causes. As it turned out, there was an opening the next day for the procedure, so I went in and had it done. The procedure is done with a deep joint syringe under a fluoroscope so the doctor can see specifically where to put the medication. This is important not only to ensure the anesthetic and steroids reach the right spot, but because there are a lot of nerves that need to be avoided in that area. Good news. The injection nailed the pain. This is not a cure, but a temporary measure, so I will need to go in every so often to have the injection done again.

As good news as this is, I told a friend that it’s a lot like making a clean spot on a dirty floor. The one spot that doesn’t hurt (my SI joint) makes it especially obvious that all my other joints are swollen and in pain from RA. I’m to the point that my hands and ankles wake me up at night. No amount of Tylenol, Tramadol, or hydrocodone seem to be able to help me achieve a good night’s sleep.

So by the end of the week, I was feeling like a pin cushion. They had to stick me four times to get the IV for the infusion started. For the SI joint procedure, they put you under light anesthesia and it took two sticks for the IV plus the actual injection sites. Ouch.

On top of all this activity, I’m in the midst of two major projects that have me sitting for long, long hours in front of the computer. All the stress and inactivity isn’t helping the RA but, as a self-employed consultant, there is no such thing as “bad” work.

But it’s the holiday season and I’m looking forward to Thanksgiving next week. No great plans. Just kicking back with my husband, having lunch at a favorite restaurant, and perhaps hitting a movie afterward.

I hope your life has been busy with good things and the forthcoming holiday season brings you and yours many blessings. Thanks for checking in.





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Now it’s the  SI (sacroiliac) joint — where the spine (sacrum) joins with the pelvis(ilium).

About six or eight weeks ago I started having lower back issues. As this coincided with

Sacroiliac Joint

Sacroiliac Joint

changes in my RA medicine and drops in my prednisone dosage, I thought I would give it some time to resolve itself. I figured I’d just pulled something doing something I shouldn’t, but I honestly couldn’t remember anything.

Finally I went in to see my ortho guy. X-rays revealed a compressed joint on the right side. While the left side joint showed a dark line on the X-ray indicating cartilage/space in the joint, the right side was a white line indicating that the two bones are rubbing against each other.

Not to worry. It only hurts when I stand, bend, sit, or lay down. Other than that, I’m fine. I’m working my way through bottles of pain killers, NSAIDS, and Voltaren gel.

In the meantime, my ortho guy is sending me on to my spine guy and indicated that an injection in the SI joint is probably in order. These are done by interventional radiologists. Hopefully I’ll get an appointment with my spine guy this week and the injection scheduled soon. Other treatment options include physical therapy so that might be in my life too.

In other news, still waiting for the Remicade to “kick in.” I’ve had my three loading doses, but so far not much, if any change.

I hope the “sighs” in your life today are from happiness. Thanks for checking in.

Time Thief


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There’s been a lot of discussion about the cost of RA treatments. It’s no secret that biologic medications run in the thousands of dollars. Add in physician and therapist appointments, lab tests, and radiology costs and the dollar amount can be monumental. While costs can be staggering, from an individual standpoint, there is help in the form of insurance, public assistance, and programs offered by drug manufacturers to help offset these costs. But RA steals something more precious than money – it steals time.

Read the rest of the post here:


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