Health, Health Care, Rheumatoid Arthritis, Rheumatoid Disease

Beautiful Kidneys, or a Way with Words

you-have-a-way-with-wordsThis morning we drove to the other side of town while it was still foggy out; I had an appointment for an upper abdominal ultrasound. After many years on methotrexate, my blood work began reflecting elevated liver enzymes last summer, and my new-as-of-last-week rheumatologist wanted a closer look.

A very nice technician took me back into the depths of the outpatient center and began the study.

“Take a deep breath, as deep as you can … Hold onto it … … … … Breathe. Excellent!”

I found the repetition reassuring. While I cannot control the medical “grade” I receive, at least I know that from a behavioral point of view, I cooperated to the best of my ability, held my breath as long as asked, and over and over received the affirmation, “Excellent!” A+, right?

It was a complete upper abdominal ultrasound, so it took a while. Just when I was feeling more relaxed, the technician had to press a little harder to get her angle, and I coughed. And coughed. And coughed. The student observing was sent for a cup of water. I half-sat up, awkward, en déshabillé. The technician never lost her calm, good-natured expression. We began again, and I was asked to roll toward her.

That’s when she asked what work I do. When I answered, her face flashed recognition; she said, “I’ve heard you preach, at Saint Thingummy’s! I remember that sermon; it might be the only sermon I’ve ever remembered. It was about the ocean.”

I tried to remember the sermon while maintaining focus on breath held and released. “Excellent!”

She asked if I would allow the student to take some extra pictures, as part of her training. Of course, I said. “She has beautiful kidneys,” said the technician to the student. “Why don’t you get me xyz measurements?” She left us alone.

Beautiful kidneys. I guess that’s something.

The technician returned to walk with me out to the waiting room. “Was it,” I asked, “about being knocked over by the waves?”

“Yes,” she said, “my husband remembers it, too. You have a way with words.”

So do you, excellent technician. So do you.

Health Care, Rheumatoid Arthritis

H1N1 and you…well, me

One of the side concerns of living with Rheumatoid Arthritis is the immune-suppressing nature of the medications used to treat it. Last Christmas I caught a cold that was as hard to shake as the bronchitis I remember from 1991. Thankfully, it never progressed beyond the rotten cold and cough phase. But it seems to be the case that every cold virus that approaches me will become a cough as well, and a cough exhausts and makes recovering that much harder.

A couple of years ago, I caught the flu. I ran a fever, and I had body aches and chills and as Dr. Sherry pointed out, you could tell it was flu because I knew when the train hit me.

What I have now is a cold. Definitely. I woke up Saturday morning with a slightly sore throat, and I felt a little worse all day, and by Sunday morning I had a cough and a voice like Suzanne Pleshette's, and by Monday morning a voice like Teller's and a cough and a very runny nose. When I called the office,The Best Administrator in the World could not understand most of what I was saying. Even today, on my third day of rest, it would be accurate to describe my voice as "faint."

This is the same cold virus that LP had last week. She felt miserable for one day.

So, as I spent another morning napping, and on either end of that nap watching MSNBC, I could not help thinking about H1N1. There's a lot of excitement out there about swine flu. You've probably noticed. People are freaking out about the virus itself and even moreso about the vaccine. I won't repeat the conspiracy theories because I don't want to give them airtime.

Our family doctor does not consider the H1N1 virus to be necessary for our family members in good health. She leaves the call on that for me up to the rheumatologist. Last year at his office I had my first flu shot ever, with no reaction and, I might add, no flu last winter.

If a cold is this hard to shake, I hate to think of having the flu now, any kind of flu. Given that I'm at greater risk for pneumonia than the average bird, I hate to hear that what's killing some people with H1N1 is the pneumonia they've developed alongside.

What are you doing about the vaccine? Should I be laying in Gatorade?

I must be feeling better if I'm trying to start a conversation.

A-Croc-Alypse Now, Health Care, Politics

Can it be done?

Proper comportment in the Capitol building happens to have been part of my upbringing. I was five years old when my daddy won election to the U.S. Senate. During his one term as a Democratic Senator, he voted his conscience, often to his detriment politically. He did not speak rudely to his opponents because his mama, Miss Emily, raised him not only to be a gentleman but to do unto others as he would have them do unto him. 

I'm not sure what the Mom of Congress will
have to say about it, but where I grew up, we knew better than to call
the President a liar in the middle of a joint session of Congress, whether we agreed with him or not.

Reading the comments of my friends on Twitter after the speech I saw some who were pleased and others who wondered why the President continued to encourage the Republicans to work with the Democrats on health care reform. They remain convinced that the President will never win over the other side.

But I am encouraged that he still wants to try. I want to think there is hope, and it seems to me that such a public statement cannot be refuted.

"Is bipartisanship feasible," asks my TV boyfriend Keith Olbermann, "when there's this kind of almost blind reaction from the other side?"

The President's advisor Valerie Jarrett says, "Yes."

What do you think? Can it be done?

A-Croc-Alypse Now, Health Care

Uninsurable, Part 2: The Voice of the People

I'm grateful for the more than 30 comments on yesterday's post about health care and particularly health insurance. Since some people will read only the post, I will excerpt some of the comments here. (I apologize for not linking to your blogs, if you have them, but Typepad kept trying to turn big blocks of texts into links.)

revmaria, who is like me a clergywoman, writes:

a cancer survivor and it's hard even to get life insurance! We don't
have a house or substantial savings so any illness could spell disaster
and homelessness for us.

LaReina, one of my first Internet friends from way back at (Vale, Usenet!), shared a story about her sister who, like their mom, had breast cancer:

self-employed sister's policy with a MAJOR health insurance company was
terminated the first/only time she reached her deductible, which was
when she was diagnosed with cancer.

It took them six months to red flag her case and find an excuse to
terminate her coverage. It was mid-way through chemo (and about two
surgeries into what would eventually be five or six) when they dropped
the bomb. She was far more stressed about the insurance situation than
she was about the cancer.

Ten years later, thank God she's healthy, but she's still paying off
the $200K-plus medical debt. It ruined her credit score, making her
ineligible to refinance her house which, ironically, would have freed
up more money each month to pay down the debt.

Auntie Knickers responded to Pam's comment (about being afraid in a British-type system care would be rationed away from people in their 50s) with this suggestion:

think Pam might want to check out this website, and I've quoted the
relevant answer to what her physician told her. Although many
physicians are strongly in favor of health care reform, there are those
who for ideological reasons or just plain greed are spreading
misinformation about the health care in other countries.

Mrs. Redboots, writing from Across The Pond, adds:

don't know where your physician got his information from, but he is
totally and utterly mistaken. It is, in fact, mostly older people who
need – and receive – heart operations like stents. My father is 85,
nearly 86, and has recently had two minor operations for carpal tunnel
that he arguably didn't need, but which have improved his quality of
life enormously (to say nothing of the shape of his hands). Is this a
system which denies medical care to its elderly?

Quite frankly, we here in the UK are shocked that people in the USA are denied health care as a basic human right.

Sisterfilms added a younger person's perspective:

If I got
to make the decision, I would hope that America's universal health care
were something like the state sponsored care I have in Land o 10,000
Lakes – I rarely pay a copay and my dental is covered in it's entirety
(OK, I can't get braces or a metal crown, but now all my teeth are
intact!). I pay $29 bucks a month and not much else. Of course, I am
poor, and it would be more if I weren't.

Liz, who knows where I'm coming from, writes:

I'm still
amazed how many people have no idea that they're just one immune system
malfunction or cancer diagnosis away from being uninsurable (and how
many people think neither of those things could ever happen to them
because they eat right and exercise).

We heard from several self-insured free-lancers, both writers and an editor. I cannot imagine earning enough money to lay out $800 a month for insurance when the deductible is $2500, but that is what they are facing. Ruth writes:

I try not
to think about what will happen if one of us develops a serious
condition. We could be so easily dropped and never be insured again.

We worry about the future for our children, for as Deb says:

older daughter takes a maintenance medication that, without insurance,
would cost us hundreds a month. Her regular check ups would cost
hundreds more. It's not a stretch to say that when she tops out of our
health insurance in 7 short years, that I don't know how she will be

And yet people say that they don't see the need for reforms…

Dr. Sherry is a pediatrician and shared a letter to the editor she wrote last month, which stated in part:

In this
world we ration all our resources. We ration food, gasoline, land, law
enforcement resources, educational resources, the time we give to each
of our children, the attention we give our spouses and much more. All
of this occurs based on the availability of resources and our
individual and collective means to pay for these resources. If you do
not think that Healthcare Resources are being rationed right now, than
you are just not paying attention. What this country needs is to become
more mindful and intentional in how this rationing occurs…

We need
Universal Health Insurance, whether it is through a well regulated
private insurance market that prevents taking of huge profits by
insurance companies at the expense of people's lives, through a public
option plan that competes with private insurance to make them more
accountable or through government provided universal healthcare
coverage..I Do Not Care. But, it must be done, it must be done soon.
What is happening now is amoral.

Finally, I would like to mention that Typepad's spell checker declares that "uninsurable" is not in the dictionary. We should live so long. All of us.

A-Croc-Alypse Now, Health Care, Rheumatoid Arthritis


I've been watching the news of health care reform town halls and listening to the way a minority whips up hysteria to avoid having an actual conversation about where we are as a culture and whether we have responsibility for one another and who deserves priority care and even what would be effective and efficient.

I keep hearing that most people are happy with their health insurance and therefore see no reason for anything to change. It seems to me they're neglecting to consider the possibility of losing their insurance and being unable to get more.

In the UCC we have insurance that is portable, which is to say we can take it from one job to another without having to be examined for various conditions, and that keeps us in the system whatever we may think about its cost to the churches we serve and to us in out-of-pocket charges.

I want my health insurance, more even than some people because I have a
dreaded "pre-existing condition." It's become crucial to my life and my family's security that I continue to serve in the UCC and to bring home the health insurance for all of us.

Meanwhile, churches are facing the same kind of economic downturn and financial concerns that we see in the rest of the world. They want to downsize. They wish they didn't have to pay for health insurance for pastors. Even in less independent-minded denominations, local churches are seeking ways to get out of covering a pastor.

That's bad for anyone but for a person with a pre-existing condition it's potentially disastrous.

I'll write more about churches later in the week, but for now let me say I worry that there will not be enough gainful employment for pastors in the not-so-distant future. I look out into a future of no church
jobs and see not only unemployment but poverty and uselessness.

Even if
I figured out some other work to do, I would be uninsurable.

It's hard,
in fact nearly impossible, for me to picture a future that isn't
catastrophic without my health insurance, and therefore hard for me to
separate my sense of call from my fear of being on the street. For me,
it won't matter if my husband can get another job with health
insurance, because no one will take me.

And if you are reading this and saying, wow, I'm glad that's not me, well, it could be. 18 months ago I was in vigorous health. I had lost a lot of weight and was exercising regularly and eating right. I felt great.

After shoveling a large amount of snow, I began to notice some shoulder pain, and then some knee pain. I thought I had injured myself, and I saw a doctor and then another.

Then one morning I woke up and could not bend my fingers. I had trouble getting out of bed. I could not open my bedroom door to get out into the hall and had to call my daughter to free me. Another night an 8 pound cat on the bed was enough to make it impossible for me to move the covers.

I'm lucky. My family practice doc got me right in to see a sports medicine doctor, and she listened to the physical therapist who urged her to send me to a rheumatologist. I responded well to baseline treatments that are relatively inexpensive compared to some of the newer medications. I work a regular, in fact a demanding, schedule. If I need the more expensive medications, it seems they will be covered, too.

Sometimes I feel crappy, but mostly the pain and stiffness are mild and I consider them to be background noise.

You wouldn't look at me and know I had a chronic illness. Well, I don't think you would. I'm not a Bible-era leper. No one is ringing bells as I walk along. I'm not contagious.

But an insurance company would look at me and see someone they did not want to know. On paper, it can't be hidden, this invisible illness.

So when I read stories about people who lost their insurance, I feel close to them. I know things must change. I want the people with the power to make the changes to stop being distracted by yelling and, frankly, to stop catering to people who will never do things differently or see the need for progress.

(Yes, that has a parallel to church life, too.)

With insurance and appropriate continuing care, I am a contributing member of society. But should I face a period of unemployment, I would lose the capacity to pay for those medications. I would become a burden to my family, both physically and financially. And when the money runs out–when the house is sold to pay for prescriptions–when there is nothing left–then I become a burden to the rest of you.

There has to be a better way.