Chronic Illness Survey

After posting about my thoughts, experiences and sometimes comedic adventures living with Rheumatoid Arthritis, I was contacted by a publisher who thought that a book with such a perspective would really help some folks. I also got my 15 minutes with "Everyday Health", a website with millions of readers, I'm told. Click here to check it out (I feel very famous).

So ... I'm writing a book about living with chronic illness. Working title:

Living with Chronic Illness: 

When Your Body's Trying to Kill You, But Dinner Can't Be Late

If you'd like to HELP me write this book and you have a chronic illness, like RA (or any other form of inflammatory arthritis), Lupus, Fibromyalgia, diabetes or other chronic ailments that so many of us are living with these days, please participate with this survey to add your voice to those going through this diagnosis and management process: https://www.surveymonkey.com/r/7VJD9KC 

I'm not selling anything. You can remain anonymous if you're prefer. I'm trying to develop some documentation that how things are for me is not at all unique. It's 10 questions. Maybe 10 minutes.

Living with Rheumatoid Arthritis

With the news of music legend Glenn Frey’s passing came a question for many: How could a form of arthritis–specifically Rheumatoid Arthritis (RA) –cause someone’s death? Isn’t it just achy joints and extra misery during cold weather?

RA is an autoimmune disease much closer to the Lupus that shortened the life of Charles Kuralt than the Osteoarthritis that tells your grandma it’s going to rain tomorrow. With RA, the body’s immune system attacks itself, primarily in the synovial fluids in joints. Any joint. Every joint.

I was diagnosed with RA in 2013 while I was recovering from surgery to replace my knees. A veteran knee patient, I had them done the same day. One morning about 7 weeks after the surgery, I awoke in a whole new world.

My hands and wrists were on fire with pain. I couldn’t grip my bed sheet to pull it over me. In comparison with double knee surgeries and childbearing, this was near the top of my “impressive pain” scale.

As the day wore on, I had the ache and misery that we all remember as the feeling you have when coming down with the flu. That first day as a slow-rolling sense of “this is getting worse” comes over you. I describe it as full-body tendonitis.

I tried to sleep, hoping it will resolve. It didn’t. I’m a person who rarely runs a fever, but my thermostat couldn’t figure out what it wanted. I sat up in my bed, sweating, with chills, wrapping myself in towels and blankets, then throwing them off. It was like an Olympic hot flash.

I went to physical therapy as planned. My wonderful therapist suspected RA right away, gave me a very light day’s activity and got me an appointment within a day or two to see a Rheumatologist. These symptoms were a classic presentation for RA, she said. I was diagnosed immediately.

Many RA patients have a very different experience, however. Their symptoms can be more vague, more gradual. Misdiagnosis is common and the delay in starting treatment can come at a great cost.

Treatment for RA suppresses the overactive immune system.  Without it, RA patients will suffer deformities in their joints, most commonly in the hands. You’ve probably seen hands with crooked, swollen fingers. That’s the signature of RA, but not the limit of its wrath.

Left untreated, RA can attack throughout the body, striking with inflammation in the organs, tendons and the vascular system. RA patients are at higher risk for heart disease, pneumonia and lung complications.

Some of the disease modification drugs that treat RA have been around a long time and are still used to treat cancer. The new “biologics” are very effective in driving the disease into remission, but can make patients more vulnerable to infection and some forms of cancer.

We’ve all been bombarded with advertising for these biologic treatments. You see a young father working on his daughter’s doll house, a woman cheerfully running her catering business. The ads emphasize that these people can do these things that are stressful for their hands, thanks to these drugs.

In the RA community, we have a name for the people in these ads. We call them “actors.”

In reality, living with RA is about mitigating chronic pain and restriction of activities. It’s about fatigue. Lots of fatigue.  It’s the frustration of a kind of brain fog that’s hard to describe. I’ll tell you about it when I find my keys.

It’s also about avoiding getting sick with colds and stomach bugs. Less hugging and kissing. More waving and sending emoticons for events we have to skip because there will be a crowd of people. This time of year, it can be very isolating to be an RA patient.

For me, the development of voice-activated word processing and Siri have kept me connected to the world and the work I love – writing. Some days, everything hurts and that totally stinks.

Every now and then (a day or two each month) I enjoy the miracle of a full night’s sleep, a hot shower in the morning and a day where almost nothing hurts at all.

Imagine that!

Obama's last State of the Union

Some of the speech I wish the President had made (please share if you agree):

My fellow Americans, the State of Our Union is “strong.” The State of Our Politics, however, is in critical condition.

In America this morning, a nurse and a teacher arose before dawn to go into work caring for our most vulnerable populations. Restaurants served their patrons. A cop walked the beat. A firefighter ran into a burning building. Americans are strong and more resilient than ever. The capacity of Americans to work for a better world is well established.

But in this chamber and across the various levels of the political spectrum, a poison is coursing through the veins of our body politic. It is fed by fear and isolationism. It is metastasizing across social media where vicious attacks become viral sensations. It destroys our good faith in the institutions of a civilized society. It helps and gives encouragement to our enemies.

Only Americans possess the ability to damage and undermine American values. We do this when we limit voting rights, stay home on Election Day and surrender to cynicism. We do this when we pull the ladder of progress up behind us and say “I’ve got mine, you stay out.” We do this when we argue for decades against ensuring that all citizens have access to quality healthcare. We do this when 20 first graders are brutally murdered in a public school and we do nothing about it.

Nothing.

Shame on us. Shame on all of us, without exception. The American people are getting up every morning and going to work to take care of themselves; to provide a better future for their children; to serve their communities. Why isn’t the Congress doing at least as much for kids as a cafeteria worker? Why does it take a campaign of shaming Congress to pass a bill providing medical care for 9/11 first responders? Why is it that the mass shooting of civilians on a regular basis is not the subject of official inquiry by a select committee?

Where would we be if the NYPD and FDNY behaved on 9/11 as you do today?

This can change and it can happen overnight. The people in this room can make that happen by making a choice. You can choose to elect citizenship over partisan rancor and you can do it right night now. You can decide that some things have to be handled without a political lens – things like security and infrastructure. You can do things for the good of the country, regardless of how it plays in your district, then you can explain that to you constituents. You can be leaders. And you know what? You SHOULD do that, because that’s what the voters sent you here to do.

One of these days, they’re going start measuring you against THAT standard – what’s good for the country, not just what’s good for keeping you in office. Will you be ready?