{NHBPM Day 7} Redesign a Doctor’s Office (sort of)

I’m trying not to feel guilty for being 5 days behind on National Health Blog Post Month, but things happen! In my case, a never-ending flare has me still catching up on last week’s prompts. 

 

I have to admit that I don’t pay much attention to the waiting room in my doctor’s office, because whenever I’m there I’m usually desperately trying to focus on the reading I need to catch up on, or emailing my professors to let them know that a note from the health services desk will be attached to the homework that I’ll have to leave in their mailbox, or trying not to succumb to the ever-increasing fatigue that attacks at the worst of times.

The waiting room is on the third floor of the tallest building in Harvard Square; its cement façade is out of place among the brick and cobblestone of the tourist-trafficked Square, but it provides one of the best views of our small part of Cambridge. The sunlight streaming in through the large bay windows does nothing to suppress my fatigue, and I often have to remove several layers as I sit in front of those windows, soaking up the sun.

Needless to say, the last thing I’m thinking about in the waiting room is how to redesign it to make it suit my needs better, but I suppose I have some ideas. First of all, I would love to have a clock in this waiting room. Right where a clock should go, there is a sign saying, “If you have waited more than ten minutes past your scheduled appointment time, please see the front desk”, as if to taunt patients with the fact that they will never know how long they’ve waited unless they repeatedly check their own watches or phones. Secondly, those chairs should be reclinable, or at the very least comfortableThere is just no way to get comfortable when you’re crowded in with sick patients who are sweating from the hot sun just as much as you are.

The most important addition I would like to see in the waiting room: tablets complete with software that would provide a likely list of questions your doctor will ask at your visit based upon your presenting symptoms. Does software like this exist? If so, it would go a long way in making each visit as productive as possible. If I didn’t have to stop and think up answers to questions I wasn’t prepared for, I would be better able to articulate myself and make sure I wasn’t missing a key part of my history or symptoms. With a chronic illness, it can be really difficult to remember which symptom goes with which diagnosis, or even to know which symptoms are relevant and worth mentioning. The more doctor’s visits I have, the better I can predict the questions that will be asked, but sometimes brain fog sets in and I need to rely on an external memory device for prompting. Usually, that device takes the form of a scrap paper I scribbled on in the waiting room as I tried to remember what to bring up, or even why I was there in the first place.

If a waiting room had docking stations for tablets that would sync to the doctor’s own tablet or computer, patients could prepare answers to commonly-asked questions (or even not-so-commonly asked questions, so nothing would be left out) as they waited, and then would be able to verbally add more depth to their answers with the doctor’s prompting during the visit. The software could even help the doctor identify rare or forgotten causes of a range of symptoms without stigmatizing the doctor’s lack of knowledge–any red flags would be subtle, and it would still be up to the doctor to decide to pursue more tests or information on anything suggested by the software.

I’m a huge fan of informing doctors of rare or under-diagnosed conditions because conditions like mine often remain undiagnosed–and untreated–until it’s too late to make any preventative treatment decisions. I know we’re probably a long way from using any type of software like this in making health care decisions, but at the very least a check list of commonly-asked questions available in the waiting room could help focus the patient’s mind and provide her with extra time to present a litany of symptoms.

 

{NHBPM Day 4} What’s in your backpack every day?

Last week I went to the library with my adviser to grab some books on the woman I’m studying, and she remarked that I was carrying quite a heavy-looking backpack. I laughed and sort of sighed, not ready to go into why I have to carry my backpack with me everywhere (I didn’t bother to mention that it actually isn’t that heavy, and that actually if it were heavy I wouldn’t be able to lift and/or wear it).

But now I get to tell you all what’s in my backpack! And I’ve added pictures!

Tiger Balm pain patches, Joint Relief gel with arnica, and my all-time favorite Badger Arnica blend Sore Joint Rub

Arnica is my hero. If something says Arnica on it, I will snatch it up because it is magical. I first discovered arnica when I had my wisdom teeth extracted, and when we applied a salve to my cheeks they didn’t even begin to bruise. I kid you not. If I’m too achy to go to sleep, I reach for whatever arnica-containing magic is closest to my bed and smooth it over my joints (fingers first, so they get taken care of while they’re taking care of the other joints). It reminds me of the eucalyptus spearmint muscle-soothing lotion my mom used to rub on my aching joints every night when we thought it was just growing pains (note to future parents: growing pains should stop at around age 10. My “growing pains” brought me to tears every night for 18 years, and now we finally know the cause).

Tiger Balm is very similar, and just as magical. I put a patch on my most troublesome shoulder when the salve combined with pain meds just won’t cut it so I can go out into the world and be mobile. The only downside to these patches is the price, but I splurge because they stay on better than the store brand equivalent (although to be fair, even the stickage on these could use a little work).

Two pairs of compression gloves and a roll of waterproof Nexcare tape for fingers.

I recently started wearing compression gloves almost constantly and they have made a world of difference. The problem with EDS is that once you brace one joint, the joints around it tend to overcompensate and then they start to need bracing. That’s what has been happening with my wrists: I immobilize them, and my fingers have to do all the work and have moved from simply hyperextending as overcompensation to subluxing and then, as of this morning, to dislocating.

These gloves provide compression and warmth to my finicky fingers and apparently make me look tough. I’ll take it.

Unfortunately, they only go up just past the second knuckle, and my first knuckles are the ones that are typically the least stable. To help with those, I keep a roll of waterproof bandage tape in my backpack and wrap it a few times around the joint to help support it. This kind of tape doesn’t bother my skin because it’s latex-free (I have a latex allergy. Didn’t I tell you? Right, right, I can’t keep track of my mounting allergies either) and since it’s meant to go over wounds, it peels off easily from my stretchy skin.

Elbow brace, neutral compression arm sleeve, and a variety of wrist braces.

I’m usually wearing some or all of these items, and usually on both sides, but I do like to carry extras if I can just in case something happens (like that time I spilled hot chocolate all over my wrist brace… Seriously though, for klutzes like me these things are incredible life-savers like that!). The blue compression sleeve is wonderful for days when my elbow isn’t bothering me very much, because it provides neutral warmth, which is actually magical. Neutral warmth (as explained to me by my incredible mother) dampens hyper-irritation caused by chronic inflammation of nerve endings, thereby reducing pain! It also is generally quite soothing and provides your nerves with a sense of stability, regardless of how much stability garments like this sleeve provide. It’s essentially the same phenomenon as babies who like to be swaddled really tightly, only on a smaller scale. In addition, light compression found in things like socks helps maintain your body’s resting temperature which prevents the exacerbation of aches and pains. Love it.

A selection of knee braces and an always-ready emergency sling.

Last but not least, I give you a few of the knee braces I wear and carry with me, depending on the day. I do have some bulkier ones, but my kneecaps are so hypermobile that I really only use braces for that neutral warmth phenomenon since anything that restricts my patella’s range of motion will actually cause morepain than it does when it subluxes.

I also make sure to always carry a sling with me, because my shoulders have recently been acting up. I’m so ready for this upper-body flare to be over, especially since today I dislocated my shoulder just standing at a crosswalk, and a block later my right patella subluxed, and then my right ankle subluxed. At any rate, I was glad to have my sling so that I could temporarily fix that problem before attending to my right leg, and that prevented me from causing any more pain to my shoulder! Excellent!

 

So that is why I carry around my backpack everywhere: the front pocket is for bracing and other supplies, and the back holds my books and laptop. I haven’t included my ankle braces because I wear them all the time, and my meds are sort of a given so I didn’t bother taking a picture of those (though I have seen some rather artful pictures on Instagram of all the meds you spoonies are on and I may have to give that a go one of these days!). I’ve turned into an armed warrior lately, and although the braces put people off (especially the hand/wrist ones) I’m slowly learning to reshape my self-image to include the braces so that I can carry on as usual and forget the stares.   I haven’t seen anyone from back home since my “transformation” (in high school things weren’t this bad; I’ve only had to include my armor as part of my daily wardrobe for the last two months or so), and I don’t really want to. I don’t want to explain. I’m ready for this to be my norm, for me to stop having to answer questions from classmates, professors, or even strangers. Do they ever stop? I’m crossing my fingers (not literally).