What Can Rheumatologists Learn?

My youngest son’s best friend was diagnosed last week with type 1 diabetes.  I am amazed at the education and support the family is getting.  This won’t be a post about diabetes, though.  I’ve been thinking about the difference between how newly diagnosed diabetes patients are treated and how newly diagnosed RA patients are treated.

It’s pretty common for a primary care doctor to diagnose RA and write a referral to a rheumatologist.  Depending on the part of the country, there’s a 2-3 month wait until the rheumy has a new-patient appointment open (so much for early, aggressive treatment).  On the other hand, a kid diagnosed with diabetes is seen by a specialist within a few hours.  Obviously there’s a need for a new diabetic to be seen promptly, so doctors arrange their schedules accordingly.  Why can’t rheumatologists keep a few new-patient appointments open so that people can be seen and treated in a timely manner?

In theory, RA patients can benefit from physical therapists, occupational therapists, psychologists, podiatrists, and neurologists, but only learn about some of those options from online support groups, not from their doctors.  What a difference with diabetes!  At the hospital, a whole team of people introduced themselves, did some teaching, and explained how that particular specialty could be of assistance.  The family saw an endocrinologist, a psychologist, a diabetes educator, a nutritionist, and a slew of others, too.

understanding_diabetes_book3aThe diabetes educators wanted to talk to our friends’ entire family, and gave them a notebook to store all their handouts.  Our friends were given a little book to use for looking up the carb count on just about any food they might think of, and taught how to use it.  They were taught about diabetes and what they need to do to control it, then given a terrific book explaining all that information again so that the teaching gets reinforced.  On the other hand, RA patients receive… nothing.  Families are told… nothing.

Disease control is another area where there’s a huge discrepancy.  Diabetes patients are under control when they leave the hospital.  RA patients take 3-12 months, if they’re lucky, to get under control.

After my son’s friend left the hospital, he had a follow-up appointment at the clinic two days later.  The appointment was 3 hours long and provided additional education.  After an RA patient finally gets in to see a rheumatologist, follow-up is a 20 minute appointment in three months.

How easy is it for RA patients to contact their doctor with a question?  The endocrinologist seeing my son’s friend provided his business card with clinic and cell number on it, and emphasized that there is 24 hour support available; they’re to call any time they have a question.  The doctor explained clearly that after hours, there are nurses who stay up all night just to answer phone calls, and it is okay to call in the middle of the night.  There’s no need to wait for the office to open; just call.

Now, I understand that DKA is an emergency in need of immediate treatment; RA isn’t an emergency.  That doesn’t mean that RA patients don’t need and want information and some support to figure out how to deal with our new normal.  There are medicines that can help, and it is unconscionable to hand RA patients a prescription for something that might help in 3-6 months and tell us we’ll just have to suffer in the meantime.

I suspect there’s a lot that rheumatologists could learn from pediatric endocrinologists.  I also suspect that, in the long run, insurance companies would save money by funding education and prompt treatment.  What’s it going to take to make it happen?

Happy New Year!

CalvinAndHobbes

If only my name was Calvin.  Alas, there are days I feel more like Pigpen.

Resolved… I just can’t make a million resolutions that I’ll never keep.  How about just one:  I resolve to try to take better care of myself.  This body is the only one I get, so I need to take better care of it before it completely gives out.

Diet:  It matters what I put in my car’s gas tank, and it matters what type of fuel I put in my own body.  I resolve to pay more attention to using the best fuel.  This includes a good look at what goes into my garden so I can grow most of our produce.

Activity:  I hate “exercise” because it makes me think of running (which I hate), or gyms full of little kids doing jumping jacks (let’s not go there).  I’ll be teaching swimming lessons, and will try to do some laps between classes, but that’s not going to provide as much activity as I really need.  My home gym is great, but it’s in the garage, which is freezing cold this time of year (really, the refrigerator is warmer than the garage).  I’m considering developing a routine that can be done in the nicely heated house on an exercise ball. Dr. Synonymous’ mentions of his Get on the Ball exercise classes sound low-impact and warm, so I’ll look into doing something similar.

Weight:  Not going to worry about it.  Since my rheumy and PT both have said my weight is okay (I think they’re lying), I’m going to concentrate on eating well and getting at least 30 minutes of activity daily.  With any luck, gravity will lessen its hold on me, but I’ll quit worrying about it.

Meds:  After my horrid ordeal with pancreatitis and being off meds for three months for surgery & recovery, it was difficult getting back into the habit of taking all those pills & shots.  Add in a schedule change and additional prescriptions, and things have been less than ideal.  I resolve to resume taking all prescriptions exactly as prescribed.

The resolution is to try.  If I have an off-day, then I resolve to not give up but try again.  This should finally be a resolution I can keep.

Good luck with any resolutions you make!

RA & Dental Work

When my son was four years old, he hated the word “dentist.”  I started saying “tooth doctor” and his whole attitude changed.  Well, my spine hates going to the dentist and it doesn’t really matter what terminology is used.  Sitting in the dental chair as long as it takes to get work done on my teeth isn’t so bad, it’s the change in position afterwards that’s a problem.

Stiff spines need to change position gradually.  That means raise the chair a little bit, then wait a second for the back to adjust.  Once the spine is okay, raise a little more, wait, raise a little more, and so on.  It probably takes an extra 30 seconds.  After repeated requests that we take it slowly when returning me to vertical were ignored, a few years ago I started looking for a new dentist.

The dental offices closest to home got a chance at my business.  One place required a five-month wait for new patients, which might mean they’re really good. Turns out it just means they have scheduling issues.  The other place had better scheduling, but I didn’t like the office or the dentist. Finally I skipped two cleanings because I couldn’t stand the thought of enduring another appointment.  I am not a rocket ship. Do not launch me out of that chair!

DentalChair

I am happy to report that I finally found a fantastic dentist!  Unfortunately, I have to drive a distance to see him.  What a contrast, though.  The guy in town put me in a closet-sized windowless room.  He never introduced himself.  It seemed I was just another boring mouth to look at and then launch out of the chair so he could see another mouth.  The new dentist (I’ve been twice) introduced himself.  He actually read all my paperwork.  The staff was friendly and helpful.  He addressed my concern about going vertical slowly — then confessed that he’d probably forget and asked me to remind him.  When I did remind him, he apologized, paused, and waited for me to give the go-ahead.  It was really nice to be treated like a person, not a mouth.

Another thing I liked about the new dentist is that he’s using current technology.  No more molds and waiting weeks for the lab to create the needed cap/crown.  There’s a CAD program for dentists (that would be Computer Aided Design, not Coronary Artery Disease).  Special pictures of my teeth and their alignment were taken and loaded directly into a computer.  The computer created a 3D image and designed the needed cap to fit exactly into the tooth in need of repair. The design was then sent to a little machine and created on the spot.  Instead of waiting weeks and needing a second appointment, I waited 20 minutes and was done the same day.  That’s an amazing machine!

I am happy to have finally found a good dentist, and no longer need to dread the back pain associated with time spent in a dental chair.