Rheumatoid Arthritis is Not for Sissies

One of my favorite quotes of all time is from Katherine Hepburn. When asked in an interview about health problems at age 81, when she suffered mobility issues and an ever more maddening palsy, she said, "Old age ain't for sissies." I always liked that statement, but I think
I now truly get it.

Kate Hepburn and others who are lucky enough to grow old live everyday with limitations, aches & pains, worries that the rest of us don't really understand. It's hard work.

In the two years since my Rheumatoid Arthritis went into fulltime active disease, I think I
have begun to really understand what it means to live with RA in a way I simply couldn't, even though my mother had mild RA. For those who wonder what it's like to have RA, let me try to explain in a way I guarantee you haven't read in an article or seen in a drug commercial:

Have you ever had an earache? Or a toothache? One of those pains that actually elicits a moan or a groan?

Try to imagine for a moment, that toothache. Imagine that it's in several different places in your body all at once. And you are exhausted, because toothaches cause fatigue.

Now, imagine that it simply never goes away.

Imagine that you go to the doctor, and he tells you there is nothing wrong to cause that pain. So you go to another doctor - a specialist - because it's not possible that there is no reason for that pain.

Imagine that the specialist tells you there is nothing wrong.

Time passes, you work up your courage to see another doctor, then another. Finally, someone decides you should see a rheumatologist (or like me, you research your symptoms on the internet and ask for a referral to a rheumatologist.)

The rheumatologist sends you for labwork, x-rays, examines you and names the reason for your pain and fatigue - finally! You are given prescriptions and told to take multiple pills or injections, or infusions. Some of these drugs have terrifying warning labels, some are used for cancer treatment, some are so new that long-term effects aren't known. The drugs make you vomit, they make your hair fall out, they give you headaches, acne, joint pain, chills, or other side effects. But you take them because you want to get well, and because sometimes they make your toothache feel a bit better.

Imagine that the toothache doesn't go away for long, if at all. Imagine that the drugs get stronger and stronger. And finally...

... imagine that you will do this for the rest of your life, because there is no cure for your toothache.

That toothache is Rheumatoid Arthritis. And let me tell you buddy, Rheumatoid Arthritis is not for sissies.

Health Care - the Good, the Bad, and the Ugly

I retired from an executive job with a state agency that managed benefits for employees of the 2nd largest state in the US. I have some pretty impressive experience in communication, education, policy-making and even drafting of legislative language for health, pension and investment programs. So, I like
to think I know a thing or two about navigating health care systems, dealing with doctors ... you know, being a patient. After piecing together the crazy quilt of my symptoms, treatment and misdiagnoses over about 7 years, I connected the dots of my own diagnosis and gently asked for tests and a referral that led to my eventual diagnosis of RA, and finally - treatment.

I don't blame anyone for my being somewhat difficult to diagnose; RA is just one of those diseases that doesn't come to mind when you see some of the widely varying symptoms. It doesn't present the same in everyone. Some patients have outrageously obvious lab results; others are what is called "sero-negative", meaning they don't carry the typical blood markers for inflammation that constitute the smoking gun for a diagnosis of RA. Some patients have extreme swelling; some rarely swell. The list goes on.

But there are a few defining elements to RA that are virtually universal, symptoms that every RA patient brings to the table like stiffness, pain, fatigue, malaise ( a fancy word for feeling like crap - I describe it as that feeling you have with the flu, like "just kill me now"). Fatigue is an indicator in many illnesses, as is malaise. A doctor can easily overlook RA when considering these. And heck, I'll even give them stiffness, because until you know they want you to call it that, it's easy to describe it differently. That leaves pain, and pain is considered subjective. Here's where we get into trouble.

There is wild variance in how doctors view subjective evidence such as pain or symptoms that may have been apparent 3 days ago but aren't now (like swelling).

Some doctors consider what the patient says, and include those observations in their decision making. Others refuse to consider "anecdotal" evidence - meaning statements their patients make about their symptoms.

Why?