Being Heard

Life has been crazy busy, which I take to mean that life can be full, even with autoimmune arthritis.  Despite not being a fan of CAM, I highly recommend dietary changes.  Unfortunately, I cannot go into detail at this time. I promise I’ll write more about what I’ve learned one of these days.  Crazy busy…

We interrupt this sporadically updated blog for personal minutia.

We might be closer to getting my mom a rheumatology referral.  She’s been asking for years, and the NP’s she’s seen have been condescending, rude, dismissive…  (the MD was fired).  Every time she went to the primary care clinic, the last person she saw was gone and there was a new NP to not listen to what my mom had to say.  She’s been quite frustrated, and I’ve wondered why she didn’t go find a new doctor to actually listen to her.  Apparently there aren’t very many MD’s taking medicare.

Unfortunately, the road to finally getting someone to listen has been pretty rocky. A few weeks ago, mom sent me a text:

msg

She did not actually need help throwing up. She was doing that on her own quite well. I knew she needed help, so dropped everything and raced to her house.  She has never sent a message like this before. She tends to be one of those, “Leave me alone; I’m fine” kind of people.

After reaching her house in record time, I dug out the spare key and let myself in. I’d never seen her that sick.  She’d been too busy throwing up to take her insulin.  Oops.  Not a good sign.  I asked various questions and she sometimes made sense and sometimes didn’t.  Not a good sign.  Suggesting, “I think you need to see a doctor,” met with significant resistance.  She just didn’t want to get out of bed.

Finally I asked what/when her last glucose reading was.  She’d been so sick she hadn’t checked her glucose levels all day, just laid in bed and slept and barfed into the basin on the floor (TMI, sorry).  She couldn’t even remember how to use the meter for me to check for her. Persuasion wasn’t working as I tried to convince her to see a doctor, until finally I said, “I don’t think you’re in any condition to be making that decision.”  Not something I ever thought I’d have to tell my mom!

My husband carried mom to the car, and one of my brothers met me at the ER doors with a wheelchair to take mom inside while I parked.  By the time I got inside, not only was she in a room, but they’d already written admission orders!  She spent 3 days in ICU, and a few more days in the hospital once she was out of ICU.

For all the talk of HIPAA and people being ultra cautious about sharing anyone’s medical information – even with other doctors who need the information to treat the patient, I was pleasantly surprised at how open the doctors and nurses were in answering questions about my mom. We just wrote out questions on the handy dry-erase board, and as people rotated through the room, they’d notice the questions and answer the ones they could. Anything we asked, they answered.  And I don’t think it was because we delivered donuts every morning and had pizza delivered for the night shift.  The hospitalist even phoned me (not my mom) a couple days after discharge to check on how she was doing and let me know about an incidental finding that needed follow-up.

Where am I going with this?  What does it have to do with arthritis and the impossibility of getting a rheum referral?

Mom was instructed to follow up with an MD, not an NP, which made her finally willing to look elsewhere for her medical care while still staying in the same system that will accept her medicare.  The doctor she ended up with is fantastic!  We found someone who just finished residency last summer, which means she’s up on the most recent research and hasn’t been doing this long enough to be burned out.  This doctor listened, looked at tons of information, and listened.  This doctor didn’t brush mom off, but looked at the reasons she’d like to see a rheumatologist, and is going to do some research before the follow-up appointment (at which time I anticipate mom will finally get her referral)!

I really think it made a difference having diagnostic criteria clearly written out, indicating my mom’s score and why we believe she deserves a diagnosis. The doctor has a place to start in checking to see if we know what we’re talking about. It is amazing how good mom felt to finally have someone listen to her.

Hope your life is going well enough to also be crazy busy!

 

DMARD Notation

Do you ever read medical articles (or your doctor’s notes) and ask, “What does THAT mean?!”  RA patients soon become adept at interpreting the special language used to discuss treatment of their disease. We have to keep current, though, because as science makes new discoveries, those discoveries will be incorporated into medical practice and into journal articles.  It can be startling to suddenly come across new terminology.

When we are first diagnosed, we quickly learn the term DMARD:   Disease Modifying Anti-Rheumatic Drug.  We learn that these are traditional pills whipped up in the laboratory, including things like hydroxycholorquine (hcq), methotrexate (mtx), and sulfasalazine (ssz).

When I was first diagnosed, there was a relatively new term BRM: Biologic Response Modifier. Biologics (enbrel, humira, remicade, etc.) are the big guns that doctors go to when traditional DMARDs aren’t enough.  They’re still DMARDs, just a more powerful kind. Things have changed, and although more and more biologics are available, we just don’t see the term BRM any more.

The terminology seen now tacks a few lower-case letters onto the front of the DMARD to designate specifically which type:

csDMARDconventional synthetic DMARDs are those traditional small-molecule medications synthesized chemically: methotrexate, sulfasalazine, hydroxychloroquine, leflunomide, gold salts, etc.

tsDMARDtargeted synthetic DMARDs target a specific molecule.

bDMARDbiologic DMARD is the term used instead of BRM. Biologics are living cells – think genetic engineering, rather than mixing chemicals in a beaker.  These can be broken down into two types of biologics:

  • boDMARDs are original biologics
  • bsDMARDs are biosimilars

It will be interesting to see what new discoveries await.  I wonder how the notation will have changed in another ten years.

Avoiding Holiday Flare

Flare — dramatic worsening of RA symptoms — seems to occur at the worst possible times. That’s because triggers include stress and overwork.  We have two weeks until Thanksgiving, so unless our goal is to flare badly and miss out on all the festivities, a bit of advance planning is needed. Don’t wait until the last minute; start the work now.

Menu Planning

Write out your menu.  A few years ago, I realized that our menu was way more food than what we really needed.  I have no idea why it took me so long to recognize that we were serving two full feasts. My pared-down menu requires about half the work. Nobody feels deprived (that’s why there are still rolls on the menu) and it’s way less work to clean up.  Do whatever works for your situation.

ThanksgivingMenu

Next list all the ingredients that will be needed to prepare your menu.  This should eliminate running out of ingredients and needing to make an emergency run to the store.  Here is my list; you’ll generate your own based on your specific menu.

Click to enlarge

Click to enlarge

Make things easy for next year!  Type your list and save it in your computer; you’ll be able to find it next year. You can even slip a holiday notebook onto your cookbook shelves so that the same menu and grocery list can be used every Thanksgiving (and Christmas, if you’re like me).

Check this required-ingredient list against your pantry to determine what you need to get at the grocery store. Don’t wait until next week.  Now is a good time to take care of getting your menu planned and your grocery list made.  Obviously you won’t want to buy vegetables this soon, but everything else can be done now.  Spreading out the work a little-bit-at-a-time helps to minimize RA flares.

Menu Prep

Delegate!  Just because you’re hosting an event does not mean you have to provide all the food and do all the work.  My mom is diabetic, so she is in charge of bringing the cranberry relish that she loves and wants instead of my cranberry sauce.  The person who’s celiac is in charge of the GF dinner rolls so that she knows they are safe for her to eat.  Another person is asked to bring drinks.  Green salad is another thing that’s easy to delegate.

Copy your menu, then work out a schedule of when those things should be prepared.  Mine is provided below as an example.  How much can be done in advance? The turkey needs to be roasted on Thanksgiving day, but almost everything else can be done ahead.

ThanksgivingMealPrep

Cleaning

Everyone’s standards of cleanliness are different. Mine are generally, “clean enough to be healthy; messy enough to be happy,” so I do a little extra right before the holidays. No matter what your personal standards are, if you try to clean your entire house the day before company comes, you’re going to flare and miss out on the fun of having people over.  Spread the work out over the next two weeks so that everything gets done without you wearing yourself out. I do a scaled-down spring-cleaning in the fall to get ready for holiday company.

ThanksgivingCleaning

Getting it All Done

Choosing a couple jobs a day makes all the cleaning and meal prep realistic instead of flare-inducing.  Make yourself a little calendar and spread the jobs out over the weeks leading up to Thanksgiving.  Here’s my plan:

ThanksgivingPrepCalendar

Click to enlarge

This lets me do just a few jobs each day so that I’m not too tired, and it gets things done Thursday morning with minimal effort. I’m able to sit and visit with family and friends instead of rushing around, stressed about getting everything done.

Serving the Meal

Gone are the days of multiple serving dishes so that both tables are set completely.  Gone are the days of taking forever to fill everyone’s glasses.  Gone are the days of taking two hours to clean up after dinner.  Life is so much easier now!  I serve Thanksgiving dinner buffet-style.  The plates go in a pile on the counter. People get their own drinks. The food is arranged so that everyone can walk through the kitchen to fill their plates, then head to a table to sit and eat.  The table isn’t too crowded; there isn’t a side-board set up to hold the salad and dressings that won’t fit on the table.  Cleanup goes much faster with half the serving dishes.  It’s much less work this way and everyone still enjoys a nice meal together.

Thanksgiving, like the rest of life with RA, goes much more smoothly when we learn to pace ourselves.