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.

Making Life Easier

RA can make it challenging to accomplish tasks that we once considered easy.  Rather than struggle and be frustrated, or give up activities we enjoy, it makes sense to adapt.

Opening Doors – Just say no to doorknobs.  Save your pennies, then swap out those pesky knobs for levers that work even when your hands don’t.

doorhandle

If you have significant issues with doorknobs and can’t afford levers, get creative. Occasionally a business will change out all the locks in their building – and will change all the levers, even those that don’t lock, so that everything matches.  They work perfectly well, but there isn’t much market for used commercial door hardware. If approached right, some locksmiths might give you a bargain (as long as you realize that it’s clunky, commercial hardware and not the lightweight stuff you normally find in houses).

Laundry – First, get a good sorter and train everyone in the house in its use.  I keep my three-bin sorter in my laundry room and taught the kids how to separate their clothes into whites/mediums/darks as soon as they were able to dress and undress themselves.  If I could do it over again, I’d get a fourth bin for denim. We do have a separate bin for clothes that require cold/delicate handling. This method makes things much easier because I don’t have to bend and reach and go through various contortions to retrieve everyone’s dirty clothes and sort them into their respective loads.  When a bin is full, I dump things into the washer. It’s that easy.

That said, there are different styles of sorters.  I highly recommend finding one that has separate bags that lift off the frame, not a single bag with multiple compartments. This will allow you to pick up the bag and empty it into the washer, rather than having to bend over multiple times to dig every last sock out of the bottom of the bag!

In an ideal world, only dry items would go into the sorter, but in the real world, children toss wet socks and washcloths into the sorter and eventually the bag mildews.  Therefore, I highly recommend getting the style that has bags which easily slide off their hangers.  This means that the bag can be tossed into the washing machine and dryer along with the clothes.

laundrysorter

My other laundry tip has to do with detergent.  If your hands or shoulders get to the point that pouring detergent into the washer is difficult/painful, spend the extra money for individual pods.  I’m pretty frugal (I have five children, so can’t afford to throw away money), but have decided that these convenience packs are worth every penny.  It works out to 15 cents per pod; I use one in most loads, but two on socks and dirty jeans.  There is a similar option for dishwasher detergent.

laundrydetergent

Hanging Rods – Closets with rods that hang at (or above) eye level are poorly designed, in my opinion, and not a friend of anyone with shoulder issues. If you have trouble reaching up to hang your clothes, consider modifying things so that you can hang your clothes at waist height.  Fortunately, my closet has rods at two heights; when my shoulders started causing problems we swapped things around so that my husband had all the top rods, and I got all the lower ones that I could reach easily.

closet

Berry Picking – There’s nothing like trekking up into the mountains to get huckleberries.  The peace and quiet, back-to-nature, time with the family… it’s heavenly. Months later you get to re-live the pleasant memories while enjoying the berries you’ve preserved. Unfortunately, huckleberries are tiny little things (half-the size of a blueberry), and not always easy to grasp.  This year I discovered two tools that I love.  While I used them for huckleberries, they’d also work on blueberries, gooseberries, and various other berries (not so great on wild blackberries, imo, but cultivated ones might be okay).  Do these tools work?  I have five gallons of huckleberries in my freezer for us to enjoy all year long. 🙂

The first tool I found is oh-so-imaginatively called a berry picker.  You just stick it under the branch, then gently comb along the branch from the center of the bush out. The berries fall into the picker, while the leaves (mostly) stay on the bush.  A little debris gets mixed in with the berries, but it’s quite easy to shake the container gently and get the leaves to fall out.

berrypicker

The second tool is made by the same company, and just as creatively named:  berry cleanup tray.  This was not something I planned to purchase, but it was suggested when I ordered my berry picker.  I don’t usually fall for those gimmicks designed to part you with your money, but this had very good reviews and my Raynauds-afflicted hands do not appreciate being immersed in cold water.  After some experimentation, I discovered that the most efficient method is to pour the dry berries into this tray and shake it gently.  Most of the debris will fall out of the tray (exactly as designed).  I then grab my blow-dryer and turn it on the low/cool setting; this blows the remaining debris off of the huckleberries. Note that this method is best used on dry berries.  Wet leaves stick to huckleberries and the tray.  It’s a pain.  First get rid of the debris, then rinse the berries after all the leaves and twigs have been removed.

berrycleaner

Don’t struggle, making tasks harder than they need to be, and don’t give up things you enjoy.  Invest in tools that will allow you to do the things that you both need and want to do.  What are some gadgets you’ve discovered that make life easier?