Breaking the Silence

As I read with distress the politicizing of healthcare in the U.S., I sometimes wonder how long it will be before our system collapses. No political arguments here, just a pondering of what arthritis patients will do. Thus, my investigation into whether there’s any merit to the claims of some that diet can have an impact on disease symptoms.  To date, the reports of people going into remission due to dietary modifications are anecdotal, but it turns out that doctors are starting to recommend that people try an AIP diet, and they’re even starting to do some research to see if science backs up the anecdotes. One of the bloggers who writes about using diet to treat autoimmune diseases was a medical researcher until her second child was born.  Another is a clinical nutritionist. Maybe there’s something to this.

One week of AIP suppers:

Second week of AIP suppers:

I’ve been experimenting with autoimmune protocol since last spring and feel enough better that I will continue eating this way.  I love the delicious recipes! The drawback is that the planning can be extremely time-intensive (thus no time for blogging) — until you figure out what you’re doing. After a while, I am happy to report, it gets easier. It still takes a lot of time, but it’s worth it since I feel better.

But I confess that changing the whole way you eat is a bit of an adjustment. What I find the most challenging is that the rest of my family is not on board with eating nutritious food.  My husband has eaten a particular way his whole life and sees no problem occasionally snacking on corn chips instead of sitting at the table for a real meal! This is what I’m dealing with!  My solution has been to continue to introduce nutritious offerings, keeping note of which ones my family likes and which ones they don’t care for.

After my wonderful husband exclaimed, “I don’t need to be experimented on!” I started trying my new recipes at lunchtime or days he works late. The big winners then get repeated at dinner on a different day 🙂

For me, keys to making it work include:

  1. …fixing my food first.  I try to have everyone eat the same thing, but sometimes I eat different food than my family.  One example is rice. I do much better if I don’t eat rice. Fortunately, I discovered that a vegetable I hated as a kid actually tastes pretty good as a rice substitute. Unfortunately, the rest of my family doesn’t like the nutritious alternative. If I prepare everyone else’s meal first, sometimes I’m too tired to make mine and just end up eating what they’re eating. Then I end up regretting it, so I discovered that I can make mine first, and the problem is solved.
  2. …planning. This is essential.  I have to know what I’m going to eat before it’s time to fix the meal. Otherwise, it’s too easy to just grab anything, and that’s rarely a good option.  Once the plan is made, you can make a grocery list and go shopping.
    I made this process easier by subscribing to Real Plans (no, they didn’t pay me to advertise for them, I just think it’s fantastic) and added upgrades for extra AIP recipes. I might write a whole separate post on how I use Real Plans, so I won’t say any more about it now.
  3. …having good substitutes.  Who doesn’t love spaghetti? But AIP says no nightshades (spaghetti sauce is made from tomatoes, which is a nightshade – a kind of plant, not, as my son thought, something to cover the windows) and no grains (pasta is made from grains).  But I found nomato sauce and zoodles, which I admit sounded very odd when I first heard of it. In the spirit of Dr. Seuss’s Sam-I-Am, I decided to give it a try and was pleasantly surprised.  I cook up a huge batch of sauce, divide it into small containers, and freeze it. Then when I cook regular spaghetti for my family, I can easily grab an AIP-friendly version for myself. I’ve served this twice to company with positive comments both times.
  4. …having breakfast options in the freezer.  I posted previously some of the breakfast recipes I found. But they take a while to prepare, and I don’t always have time to cook in the mornings. Or I might have time, but be too hungry to wait.  Instant food is the solution.  A few of the recipes I found freeze very well. I cook up a big batch, divide it into individual servings, and stick all those individual containers in the freezer. This worked especially well when we took child #4 to college and spent two weeks on the road.  Hubby sees such a difference in how I feel that he made space for an ice chest so that I could pack food for the trip! The hotels were all pretty good about putting my stuff in their big freezer overnight.
  5. …keeping a record. Being able to look back at what I’ve eaten lets me make connections between symptoms and specific foods. It also helps with planning new menus.
  6. …cleaning the pantry.  I would prefer to completely toss out the potato chips, but there are other adults in my house who buy them and want to eat them with other junk foods. I really struggled with this for a while, because every time I opened the pantry door, these awful things masquerading as food were staring me in the face.  I emptied the entire pantry, then reserved a small section at the back for the family’s snack foods. Granola bars and little things like that are in a plastic tote where people can get them easily if they want them, but they’re not so easy to grab that I’ve ever been tempted to make the effort to climb up on the step-stool and open the tote.  Most of the pantry is mine, with real ingredients for preparing real food. The snacks are there, and available, but no longer calling my name.

If your symptoms are not 100% under control, I’d encourage you to do some reading about AIP and see if it’s something you might want to try. You’re eating anyway, so why not experiment with some new recipes? 🙂  There is quite a bit of talk among AIP people about “leaky gut” and I’m not convinced that’s a real thing, but the recipes are delicious, and I’m not having any joint pain.


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:


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.