A Little Compassion

People have no idea how to respond to a chronic illness.

When my husband and I both had pneumonia, friends brought us meals.  They came and did chores for us, made a couple runs to the grocery store, and one person even volunteered to go to the feed store for me (which I imagine my ducks would have appreciated, had they any inkling that without that kindness, they’d be left to fend for themselves and have to dig through the snow for bugs).

 

Recently my uncle has been undergoing radiation treatments.  The family inquires into his well-being.  They go visit him.  After all, he has cancer so it’s serious.  He has a huge support system.

Well, not to belittle the seriousness of cancer, but his disease is curable.  RA is not curable.  Nobody’s delivering meals to my family, phoning to see how I’m holding up, or coming to visit me.  How is it that people can show up to help (or phone to offer sympathy) if you have a short-term sickness, but be so callous in the everyday challenges of a disease that will never go away?

I don’t want pity, and I don’t want to be badgered.  We don’t need a family reunion in my honor (spare me!).  But multiple emails and phone calls asking about my sick kids, with never a word mentioning me — it gets old.  Every now and then a little compassion would be appreciated.  Indifference hurts.

Link

There’s a new ER doc in the blogosphere.

StorytellERdoc (a peek behind the curtain)…  Grab a box of tissues and go check it out.

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Guidelines

In the news recently:

1. Health care is expensive
2. The government is going to take control of healthcare to keep costs down
3. Some people will die sooner because treatment might be considered a waste of money
4. Women should wait an extra ten years before getting screened for the second-most deadly cancer they might ever face

Who planned the timing of this announcement regarding new mammogram guidelines?  The U.S. Preventive Services Task Force could obviously use some help in their PR department!

It is with bemusement that I note all the hoopla surrounding the new mammogram guidelines.

None of my friends and acquaintances look forward to a mammogram.  I certainly don’t!  Nobody waits with eager anticipation until they are again eligible for their next squishing session.  This is something that people postpone and do as infrequently as they can get away with.  I don’t personally know anyone who is upset about the new recommendations.  It’s more of a collective sigh of relief:  Whew!  Now we have a legitimate excuse to not go for that test!

When doctors claim, “studies show…” it insinuates that laymen are too stupid to understand the meaning of raw numbers.  It harks back to the days of paternalistic medicine.  I’d love to see the facts:

# of people in observation groups
# of people not getting mammograms
# of people getting mammograms – broken into two categories:
       -routine screening
       -in response to the discovery of a lump
# of those people who do self-exams
# of those people who do not do self-exams
# of people who found lumps doing self-exams
# of people who missed lumps in spite of doing self-exams…

# of patients whose mammograms led to biopsy
# of biopsies benign
# of biopsies malignant

# of people who had serious complications from benign biopsies (harmed due to mammogram)
# of people with malignant biopsies who were cured - break this out as to how many were discovered and treated due to routine screening vs how many of those biopsies were not because of a routine screening mammogram

Are we talking about one study or twenty?  Is this data on thirty people, or five thousand?  Show me that these studies were done on large groups of women in a variety of locals, and that the data is the same regardless of race.

An approach that presents the raw data can lead people to a logical conclusion.  Instead of being paternalistic, this method clearly states the facts and implies that people are capable of making good decisions (this might not be true – people frequently make bad decisions, but PR is about perception).

It is so much easier to respond to anecdotes when the facts are readily available.  Facts don’t belittle the heart-rending stories that are circulating; showing the raw data would acknowledge that some cancers are identified by routine screening.  However, it would also make clear whether those anecdotes are typical, or if they’re anomalous.  Make it clear – using incontrovertible numbers – whether more people are helped by routine screenings, or harmed.

(fwiw, this approach would be a good idea when presenting the facts about v.a.c.c.i.n.e.s, too)

__________________________________________________________
Happy Thanksgiving
So grateful to have gotten my flu shots
before getting together with family to share germs.
There are always people who show up sick because they wanted to much
not to miss out on the big get-together.
__________________________________________________________

 

 

When You’re Referred to a Rheumatologist

 

Nobody wants to need a rheumatologist, but if you have to go, go prepared.

1. Get copies of all recent lab work from your doctor(s).  Your rheumatologist will want this information.
2. If you have recent joint x-rays (CT, MRI, etc), get a copy of the radiologist’s report.  The rheumatologist will definitely want the report (and might want the x-ray films/digital file, too).
3. Compile a complete medical history.  Take the time to contact your parents, grandparents, and siblings for information.  If there is a family history of significant diseases, you might consider contacting aunts, uncles, and cousins, too.
4. Think about your symptoms.  The doctor will need this information, but you will forget to mention something pertinent if you haven’t taken the time to know what you’ll say.  Keep it short and to the point.  Things to think about (based on what I’ve been asked and other patients say they’ve been asked):  What hurts?  When did it start?  What were you doing?  Is it worse in the morning or evening?  Does activity make it better or worse?  What treatments have you tried?  Did they help?  Does anything make it better/worse?

When you phone the rheumatologist’s office to make your appointment:

1. Ask them to mail the paperwork to you.  This will allow you ample time to fill out all the forms.  I’ve previously written about the paperwork.
2. Ask them what you need to bring with you to the appointment.  Do they want your x-ray films (if applicable)?
3. If there will be a significant amount of time until the doctor has any new-patient appointments, ask if they have a waiting list and can call you if there’s a cancellation.

Before your appointment:

1. Carefully complete the doctor’s paperwork.  (If you have better penmanship than I do, you can do this by hand; if your handwriting looks anything like mine, you can scan the doctor’s forms into your computer and type the answers.  Receptionists love this (my doctors have never commented, but they’ve also never overlooked information due to a lack of legibility)).
2. Find a babysitter.  Do not take children with you to this first appointment.
3. Juggle your schedule for the day of the appointment.  An initial appointment will take a minimum of one hour – maybe as much as four hours, depending on the doctor.  Make sure you allow enough time in your schedule.
4. Find out if your insurance plan requires pre-approval for MRI (the doctor might ask).
5. For the initial appointment, no make-up or nail polish (don’t buff your nails, either).
6. Consider skipping food.  Some blood work might need to be done fasting, so it’s easiest to just wait until after your appointment to grab a bite to eat.
7. Dress in shirt/shoes that are easy to remove.  You will need to undress for your exam; make it easy on yourself.

The initial appointment:

1. You’ll need to arrive early so that all the new-patient registration junk can take place.  Have something to keep yourself occupied while the receptionist is processing your paperwork.
2. Don’t forget your insurance card and picture identification.
3. Give your lab work, x-rays (if any), reports, etc. to the receptionist.  Don’t make the doctor ask for it.
4. Your doctor will go over all of your paperwork.
5. You will have a physical exam.  Pray that the doctor does not bash in your knees with a reflex-hammer.
6. If your doctor does a tender-points test, say NO, none of it hurts.*
7. Your doctor will order blood work.  Ask to have a copy of the results sent to you.
8. Your doctor will order x-rays or MRI.  Some doctors do this on-site.  It doesn’t matter where they’re done.  The point is that the doctor needs to see if there’s any visible damage to your joints.  This will serve as a baseline; the tests will be repeated every couple years or so (depending on the doctor).

Allow time to go to the pharmacy when you are done with the doctor, lab work, and x-rays.  It’s pretty common to have a prescription for an anti-inflamatory (either prednisone or an NSAID), and one or two DMARDs (methotrexate, plaquenil, etc.) (and maybe a pain medication just until things are under control).  The goal is to hit RA fast and hard (early, aggressive treatment).  Once the disease is under control, it might be possible to scale back on the meds, but for now do whatever it takes to stop RA in its tracks.

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*Kidding.  Sort of.  If you’re in excruciating pain, then by all means be honest with your doctor.  Be aware, though, that the tender-points test is for fibromyalgia, a diagnosis which will forever label you as a psych case to a large portion of the medical profession.

Of Headaches & Humor

Never did I dream that I’d ever see my doctor about a headache.  In the light of such things as broken bones and serious diseases, headaches seem so… forgive me here… trivial.  Everyone gets headaches.  Take a couple tylenol and a nap.

But when the pain is searing, maximum doses of combined ibuprofen and acetaminophen don’t help, the headache lasts over a week, and you’re vomitting from the pain, something is very wrong.

While I was busy apologizing for taking up time on such a small issue, the nurse assured me that it it was a legitimate medical complaint.  In fact, when the FNP entered the exam room and discovered that I’d turned off the light, she left the door ajar so that her scribe could use light from the hallway to see.  I appreciated her immediate grasp of the fact that this headache was serious, and bright lights made things worse.  I left with instructions to keep a headache calendar and return for follow-up in a couple weeks.

Obessive sort of person that I am, I went online to learn more about what types of things should be tracked on a headache calendar.  I wanted to include information that would be useful!  Based on what I learned, I created a file on my computer and left it open for easy access and round-the-clock updates.

Laugh all you want, but if you’d ever seen my penmanship, you’d realize that a handwritten calendar would not make things clear to anyone!  For two weeks I entered pertinent information, then when it was time for my follow-up appointment, I printed the calendar.  Thus began a flurry of follow-up appointments for something I’d once considered trivial.

A recent post at KevinMD reminded me of those headache appointments:  Humor Can Be Healing For Both Doctors and Patients.  Headaches aren’t funny at the time, but after things were under control, my calendar sorta was.

At one appointment, my doctor pointed out that the page said, “HA HA HA” all over it.  We both had to laugh.  It was funny.  I loved that my doctor had a sense of humor about it.

Laughing can help.  For some RA gallows humor, check out this thread at Arthritis Foundation’s RA Connect forum.

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Once we were looking for frequency pattern instead of possible causes, I changed formats.

Response to the Clueless

There’s a limit to the number of times one can be polite when RA is equated to a sore shoulder, or stiff hands, or a bum knee.  It gets old hearing, “Oh, I have that.  My doctor gave me a prescription for motrin.”  One time I snapped back, “If your doctor said that ibuprofen without any DMARDs is the standard of treatment for RA, then he’s incompetent.  You should be looking for a new doctor.”

It relieved my frustration with the RA=OA myth, but somehow I suspect it wasn’t the best way that I could have handled the situation.  Another time (early on) an aunt knew I’d been to the doctor and asked how I was doing.  She didn’t deserve to have me explode at her, but that’s what she got.  I have RA and I’m mighty tired of people not knowing the difference between OA and RA!!!  Wonderful, forgiving person that she is, she gently let me know that she has a friend with RA and does know what it is.  She’s seen the pain that her friend lives with every day.

That got me thinking.  I’m not crazy about sharing my medical information with anyone, but if nobody ever tells people about RA, the disease will remain invisible.  Determined to come up with a better response, I started experimenting.  The poor, unsuspecting guinea pigs in my experiment were those innocents who happened to bring up the subject.

One reply seems to work best.  Instead of acting like people are stupid, I’ve started using the RA/OA confusion as a quick teaching opportunity.  It works quite well when I quickly explain, “You’re talking about OA.  There are actually over 100 different kinds of arthritis.  RA is different.”

This response is short and accurate.  It doesn’t overwhelm the person with TMI, and isn’t rude.  It leaves the door open for future education if the person wants to know more.

  “I see food“  is not the same as, “There’s some seafood.”