Friday, July 29, 2011

RA Treatment and Morton's Fork

Morton's Fork is a term used to describe a choice with equally unpleasant results. The term is named for John Morton, a tax collector in the reign of Henry VII who used the following logic to collect taxes:

If a person chose to live well, he must have plenty of money to pay taxes to the King. If a person chose to live very frugally (or had to), he must have plenty of savings to pay taxes to the King. So, people began to say they were skewered on the prongs of "Morton's Fork".

The term is rarely used nowadays except to describe a Bridge playing maneuver.

I am currently taking weekly self-injections of Methotrexate (MTX), a chemotherapy drug that's been around for decades, and is the go-to drug of choice in attacking active RA for most rheumatologists. MTX has earned a spot as first-line treatment, because in low doses it is relatively safe and relatively effective in slowing or stopping disease progress; stopping disease progress means damage to joints, tissues & organs is halted - that's the golden ring we're all reaching for, and what my doctor defines as true remission.

MTX can cause some well-documented common side-effects like hair loss, mouth sores, nausea, stomach cramps & higher risk of infections. It is also associated with some less common but much scarier problems like liver damage, lung damage, neuropathies and increased risk of lymphoma. The best news where these risks are concerned is that there is a long history of MTX use in the real world, so its easy for me & my doctor to watch for indications of any of the wicked side effects.

MTX is the first prong of my Morton's Fork - I have accepted the risks & unpleasant side effects in hopes of achieving remission.

Unfortunately not only have I not seen remission in 8 months of MTX therapy, but I haven't seen sufficient reduction of disease activity to hold off joint damage. So, Dr. A has advised me that she wants me to try a biologic drug in addition to the MTX in hopes of beating my crazed immune system into submission.

Biologics are (simply put because I am after all somewhat simple) not the chemical combinations that are so many of our medicines invented in earlier decades. They are created through recombinant dna processes and may replicate or mimic the actions of our own proteins, antibodies, and other elements of our body's complex functions. For instance, one of the classes of biologic drugs for RA is designed to "flip a switch" in some cells that inhibits the production of a protein shown to initiate immune response, thereby reducing the damaging inflammation of rheumatic diseases.

Biologic therapies are pretty new, pretty impressive, and pretty promising. But - and this is a great big but - they bring another set of potentially life-threatening side effects, and the added risk that there are long-term health risks that we just haven't seen yet because they are so new.

Biologics are the second prong of my Morton's Fork.

To complicate things even further, I don't get to trade one risky drug therapy for a second risky drug therapy - I ADD it. Biologics are proven more effective when used together with MTX, which suppresses unwanted immune response to the biologic actions.

So in summary here are my choices:

Stay with current treatment, current side effects, current unacceptable results;
Add a biologic drug that will increase side effects, I don't know exactly what it will do to my body in the long term, in hopes of better results;
Toss the whole treatment thing, treat for pain, and wait for the inevitable deformity & crippling.

Geez man, I just wish I could pay my taxes and call it a day.

Friday, July 8, 2011

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.

Thursday, July 7, 2011

Say a Prayer for Mack

Tomorrow is a big day - we go see Dr. Brady our awesome vet to find out if Mack's cancer has returned. Mack is our 7 year old rescue , a wild, crazy, funny, sweet boxer-boy, my fierce protector and willing co-conspirator for the last 6 years. Mack had a spinal stroke in May 2009 and learned to walk again after many, many weeks of therapy. He walks a bit like Chester from gunsmoke, but he can still run like a deer - one of the wonders of neuro damage. In April 2010, a bump we'd been watching for 2 years almost doubled in size overnight - the vet confirmed my worst fears. Mid-surgery, they found that the tumor had crept several inches in all directions. It was a gory and painful recovery, and Mack never really got his wild-boy mojo back, but he still knows how to have fun and we had a great 1 1/2 years ... until I found another growth just recently.

Our appointment is in the dreaded end-of-workday time that's reserved for euthanasias. It wasn't easy, but we've agreed (hubby & I) that we won't ask Mack to suffer another invasive surgery so we can try once again to postpone the inevitable for a few weeks or months. I have had pets literally my entire life, so it's remarkable that I've never been in this position before. It's got me thinking alot about dogs and people and the value of the relationships I share with both species.

For me, relationships with people are complicated. I've always been pretty independent and self-contained - I don't mind being alone, in fact I crave it at times. I'm not easy with new people, and it takes a while for me to be comfortable after meeting someone. I tend to cultivate a few very good friends, and many of what I call friendly acquaintances, but certainly haven't christened as trusted friends. In fact, I've been surprised a few times along the way when a person I don't feel I could call a good friend says that I'm her best friend, or confides something extremely personal, or asks me for a favor (or a loan) that I would never impose on someone other than my very best friend. I often feel a bit like I was raised by wolves or came from another planet when I'm in social settings with people (mostly women) who all act like the best of friends but compete and cut each other in sweet voices with smiles on their faces. I defy any woman to say she hasn't had such an experience, and I've never figured it out.

I said all that to say all this: the more I know about people, the more I like dogs.

Dogs don't care how much money you have, what kind of car you drive (windows are good!), or how much that tennis ball you threw cost.

Once a dog trusts you, he will share his bed, his food, his favorite toy - it pleases him to make
you happy because you are his friend.

Dogs don't withhold love when they are mad. They will bite you if you deserve it, and then they want to make up.

Dogs don't lie. They don't cheat. And they don't steal unless it's something really good and you should have shared anyway.

Dogs live in the moment - they don't worry about tomorrow, they don't hold grudges because of the past, they just want to enjoy this moment, and they want you to enjoy it with them.

I have been fortunate enough to keep company with dogs all my life. I can't honestly say that about all my people. I guess that's why they call dogs "man's best friend".

I read somewhere that of all the domesticated animals, dogs are the only species that chose to live with men. I am so very grateful that they did. And I'm so very grateful that fate brought us to Mack - he is my soul-dog.

If you can spare a minute, say a little prayer for Mack. And go hug your dog.

Wednesday, July 6, 2011

What's Funny About RA

If you can't find the humor in life, you are doomed. This is especially true if you live with chronic pain. Admittedly, I have days when absolutely nothing is funny, or even the least bit entertaining. Most RA patients have disease "flares", times when disease activity is high and pain, stiffness & fatigue are debilitating. These flares can last hours, days, weeks - there are even a few with RA who never get a respite from the aggressive march of their disease and the crippling damage it inflicts.

Interestingly, many of the people I know with RA who suffer the most have the best senses of humor (is that right - the plural looks weird). Begs the question: does suffering teach us to chill, not take ourselves so seriously, actually "build character"?

How can I not laugh when I realize that painting my toenails is like a Sumo wrestler attempting yoga? Why not laugh off the fact that it's 3:30 pm and I'm still in my pajamas when UPS comes to the door? You hear humorous names for that every-morning ritual when you can't motor around well because of stiffness (morning stiffness is a hallmark of RA) - the Frankenstein walk, the penguin walk, the Zombie walk, etc. Many in the RA community believe that the name of the disease should be changed, because it gets confused with osteoarthritis, a serious but milder condition. One of my favorite suggestions is Type II Rabies - definitely an attention getter! (thanks Jay)

Some may think it's strange to make light of such a serious, crippling disease.

When you are faced with the prospect of the Zombie walk every morning for the rest of your life; when your husband or your grandkids have to paint your toenails; when you flood the bathroom because you're alone and your hands suddenly won't work to turn off the bathwater - the only sane choice is to laugh.

Tuesday, July 5, 2011

RA Loves a Crowd - Online Communities

I frequent a Facebook fan page with 9000 members - what we all have in common is living with Rheumatoid Arthritis. It has been a phenomenal source of information, support, and a safe place to address my fears, questions and feelings about dealing with an incurable chronic disease. I have made friends there ... real, reliable, warm friendships with people I've never met. This is a wonder to me, and a source of great comfort in the wild & wooly world of living with chronic illness.

Today, a new member of the community made some comments that were pretty blunt & somewhat misguided. The responses can be divided into two general categories - 1) I disagree, but I can see where you're coming from; 2) how dare you come here and question how we do things.

I was uncomfortable with her comments. I was uncomfortable with many of the responses. I tried to decide what caused my discomfort, and it was this:

We forgot there for a minute why we were there. The original poster and some of the responders forgot for a minute that there are 9000 people in this group, with 9000 stories and experiences (or lack of experience in this case.) The community has a huge cast of characters from all over the world, a few being:

The OneUps - I've had RA longer (my RA is worse, my labs are more extreme, I have more joints affected, I take more meds.) Sometimes this information is relevant to a post; sometimes it isn't. These are a few folks who don't let irrelevance keep them from sharing their statistics.

The Role Models - I have mild RA (I'm in remission, I have better function, I'm a vegetarian or runner, swimmer, take this supplement, have a positive attitude) and if you would only be just like me, you'd have milder RA too.

The Snake Oil Salesmen - I have a book, website, method, diet, to sell you & cure your RA.

The Homesteaders - I have been a member of this community longer,

The Jokers - I make light of RA to try to cheer the group up. It's possible this could annoy some people who are having a bad RA day (week, month..)

The Sybils - I may be any or all of the above, all in the same day (I think I probably fit in here.)

What's great about this community is that, even when we're having a little pissing contest about who is in charge, we almost never forget one essential fact - RA doesn't care who you are, how advanced your disease is, how you feel today, whether you live a perfect lifestyle, or how long you've been diagnosed. RA can strike you down in a heartbeat; you can go to bed feeling well and literally be unable to get out of bed the next morning. You can be enjoying positive results from your medication cocktail today, and next week it stops working and you have to start all over. You can be suffering your very first disease flare or your 100th. RA can cause joint destruction within the first two years of the disease or you can have it for 50 years with no deformities. You can teach university-level macrobiology, be retired, an IT professional or a stay-at-home mom. RA doesn't care.

In my experience, when the time comes that you need information, support and encouragement, just like RA, the characters in the community don't care who you are or what your story is. I sure hope we don't let personalities make us forget that.

Casey Anthony, the media, American culture

I just watched a half-hour of televised coverage of the Casey Anthony verdict (for those of you who have been vacationing on Saturn, she's the young mother who was accused of murdering her 3 year old daughter in Florida.) Oh my, where do I begin?

The verdict was Not Guilty of murder/Homicide/Manslaughter, but Guilty of giving false info to a police officer, 3 counts. It seems the immediate response to that on social media & television is that this is a miscarriage of justice, and Casey Anthony should have been convicted.

I can't know what was in the jury's minds, but I can tell you I have had doubts about Casey's guilt all along. I feel she had guilty knowledge, I feel she knows who the murderer is, but honestly with the cast of family characters and the accusations of abuse in that family, it's hard to come to any conclusion about Casey except that she's complicit in the coverup, clearly screwed up and a horrible mother. And those flaws do not a murder conviction make. But for argument's sake, let's assume she is guilty.

What is most troubling to me is, if we believe the popular theory that Casey killed that toddler because being a mother was cramping her style, how did she get to be so bereft of even the most basic morals? In my mind there are only two possibilities: she was born a psychopath, or she was raised one. In either case - where were her parents, how much have they hidden or lied for her in the past, do they know the truth and are protecting their daughter even after she commited a heinous murder? I don't know the answers to these questions, but I have questions of my own...

If you knew that your child had commited a murder let alone that of your only grandchild, would you help her cover it up? Would you remain silent and let her be found Not Guilty? Would you (presumably) support her, pay legal bills, come to court to show support? Or would you go to the police, tell them everything you know, let the legal chips fall where they may, and seek forgiveness and the compassion to try to help her rehabilitate herself (and her soul)?

In our current culture, each new generation of American parents has become more focused on self-esteem, competitiveness, permissiveness, material things, and situational morality (the concept that rules are good for everyone else, but when it's our problem, we have a good reason).

Is Casey Anthony just an extreme example of the self-involvement we are teaching our kids?

Saturday, July 2, 2011


Sorry guys, but this is an unabashed open love letter to the girls - you know who you are.

Nobody but girlfriends asks how you are and really wants to know.

Women can follow you from zero to sixty in 4.5 seconds; pull a Starsky & Hutch one-eighty with you; crying one minute, laughing the next.

Women don't care whether you shaved your legs.

Girlfriends love your pets as if they were their own.

Women understand and sympathize when you're afraid. And they are the ones
who bravely go where we have to go and do what needs to be done - hospitals, nursing homes, funeral homes - you know what I'm talking about.

Women are the ones who will be there when all the men in your life are gone, whether you're young, middle-aged, or old.

I'm so glad I'm a woman, and I'm so glad I have girlfriends.

We are shit hot! :)

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.


My First Blog Post

This is certainly not the retirement I had planned.

Well, here I am - blogging. Imagine that. Honestly, I never thought I had much to say in this format. To be frank, I've always regarded blogging as an activity for struggling writers or the painfully egotistic, and I didn't think I fit into either of those categories. Hmmm, guess I'll rethink that. *seconds pass* Yup, I must be a struggling writer after all.

Come to think of it, this past year has been an exercise in rethinking a lot about myself. For my entire life I defined myself as strong, controlled, capable, healthy, reliable (yes, I see these are all positive attributes - I didn't list humble).

But when your laser-like focus is reduced to counting the minutes until you can legally pop another pain pill or measuring how long you can avoid vomiting from poisonous medications; when your steel trap of a mind is muddled by the logistics of carefully rationing your steps around the grocery store so you won't have to use the dreaded electric cart; when you cancel social events, leave early or don't make plans at all because a 30 minute car ride leaves you feeling like you ran the whole distance .. without shoes .. on broken glass - well, you tend to stop thinking of yourself in sterling terms like reliable, strong, capable. You feel broken, weak, good for nothing. And in your newfound humility, you let go of some of your arrogant ideas about things like, well, blogging.

I can imagine you asking yourself at this point, "What the hell happened to her?"

I have Rheumatoid Arthritis - a chronic, incurable autoimmune disease. The hallmarks of RA are bone-crushing fatigue, unrelenting pain and loss of motion in joints, muscles and tendons, with eventual joint destruction, deformities and a probable early death. Confusing isn't it, because the name makes it sound like the arthritis we all know old people get when their joints wear out (osteoarthritis).

But it's not what you think. It is your immune system gone wild, attacking and eventually destroying - yes, joints - but also tissues and organs like your skin, your heart, your circulatory system. Children and young adults can have it, though it is more commonly diagnosed in the 40s and 50s. Women are three times more likely than men to have RA, but men usually suffer with more aggressive disease. I am absolutely stunned that I made it into my 50th decade without knowing these things about RA. And my mother had it. About 1% of the world's population has it - that's over 68 million as of mid-2010. If hearing these facts makes you curious, check out the links on this page for more info about RA.

So, if you've stuck with me this far, here's the payoff. Why, you may ask, am I blogging?

I'm blogging so that if I'm lucky someday, somewhere, someone who has read this blog will meet a person with RA, and will not say (as I have before), "Oh arthritis - yes, my grandma has that in her fingers."

I'm blogging so maybe someday a person who is frantically searching for information about his newly diagnosed RA will find this blog in the ether and be reassured, like I was, that there are others who can offer advice and support.

I'm blogging because I have read ridiculous, obsolete information about RA on the internet, and I was saved by finding the blog of Kelly Young (, an RA patient who gave me a safe place to ask questions and learn about my disease.

I'm blogging because it's sad, so sad, that I can't make a targeted contribution to fund research toward a cure for a disease that afflicts 68 million people (more than Autism affects worldwide).

And I'm blogging because I want to shout out loud to anyone newly diagnosed that I've made it through the painful, terrifying, grueling first year of treatment for RA and I still have hope, I still have fun, I still have my sense of humor ... and I still have plans!

Peace out.