A powered exoskeleton is an instrument of freedom – my experience with the Hypershell Pro X

Instruments of freedom are devices, tools, hacks or things that help us do more than we could otherwise, and often do more with less pain or hassle or risk.

Instruments of freedom can be small everyday things, like noise cancelling headphones that help you focus or an effective rolling suitcase that’s easier to roll through the airport. They can be anything that reduces the energy cost of doing something, or increases your comfort or confidence, or expands your choices and flexibility and independence. Instruments of freedom are for everyone, but they can be especially meaningful for people with various health conditions, especially those of us impacted by physical limitations as a result of these health conditions.

I first considered the framework of instruments of freedom a few years ago. A few years ago, my mindset went from “I don’t need poles” for hiking to “I wonder if poles might be beneficial”. I tried them, and they were immensely helpful. I didn’t know if it was because my balance and proprioception has changed ever since I broke my ankle (and later a toe), or if I would have benefited from them all along. Nevertheless, they were highly impactful for helping me power up and more confidently come down hills. As my body changed for other reasons (a new autoimmune disease affecting my lungs and muscles), poles went from optional to the only way I would be able to hike at all. But as hiking has become even harder, I have kept my eyes open for additional instruments of freedom that might be helpful. Specifically, for over a year and a half I have been wanting to try a lower body exoskeleton, but could not find one that was commercially (and easily) available, light enough, and at a price point that I was willing to pay.

Until now.

I discovered one called “Hypershell”. There were 3 versions available (“Go”, “Pro”, and “Carbon”) at the time I was evaluating them, with different price points ($999, $1199, $1799) with different features and accessories.

Here’s what the features were at the time I was evaluating them:

Hypershell Go X Hypershell Pro X Hypershell Carbon X
Peak “Horsepower” output 0.5 HP (400W peak) 1 HP (800W peak) 1 HP (800W peak)
Motion Postures Recognized 6 10 10
Weight of device 2 kg 2 kg 1.8 kg
Battery range ~15 km (9 miles) ~17.5 km (10.5 miles) ~17.5 km (10.5 miles)
Temperature rating of battery IP54 & Anti-Cold
Down to −10 °C
IP54 & Anti-Cold
Down to −20 °C
IP54 & Anti-Cold
Down to −20 °C
Number of batteries included 1 2 2

(As I’m writing this in August 2025, note that they’re announcing a new “Ultra” model in September 2025 but it’s not clear yet what additional features or capabilities it will have.)

I wasn’t sure, though, if I would be able to use and benefit from the Hypershell. It’s hard to explain what my physical limitation is, but it results in me feeling like I can’t press off my ankle effectively (I wear ankle braces on both side) and there’s weakness in my thigh and hip, especially on the right side, that makes it hard to step up and over when going up the stairs and hiking. I can do it, but it’s exhausting, and it results in a weird sick-muscle type feeling after I do it a lot. I joined a Hypershell user group on Facebook and also the “Hypershell disability users” Facebook group. The second disability-based group kept cautioning that you needed to be able to lift up your foot 3-4 inches and take a step in order for the device to kick in. I was nervous about getting it and it not being able to work for me. But, there is a 2 week (14 day) return period, so I was hopeful that if it didn’t work I would be able to return it and get a refund. (But there were also not-so-great reviews of their customer service communication and the refund process, so I was nervous about that.)

I decided to get one and try it. I also specifically decided to choose the “Pro” model (see table above).

Why I chose a Hypershell Pro model instead of the Hypershell Go or Hypershell Carbon

The reasons I chose the “Pro”:

  1. $200 difference from the base model (Go), but with the 10 motion patterns. Given that I’m hopeful that I can do more types of activities like I used to, I wanted to be able to have as much capability as possible.
  2. More power output – the Go only has half as much peak power as the Pro/Carbon.
  3. More range (mileage, albeit slightly)
  4. Two batteries, including the better cold-resistant ones, on the Pro/Carbon instead of only 1 on the Go.
  5. …but I didn’t care about the .2kg weight difference, and that was really the only difference between the Pro and Carbon. That wasn’t worth $500 between the Pro and the Carbon.

Unboxing the Hypershell exoskeleton and getting set up

Before the Hypershell arrived, I went ahead and downloaded the app. It required an email address and a password, and it also asked about height and weight. It had a decent onboarding experience in the app with videos embedded to show you how to open and get started and how to size it. The height and weight was used to give you a starting setting for the waist. But then I couldn’t do anything else in the app until I had connected the device.

When it arrived, I had low expectations for being able to use it right away, because people online talked about how long it took to charge/having a hard time charging it at first. Because of that, I expected to need to wait an hour or two of charge time before I used it and also was ready with a higher power wall plug to charge it. For some reason, the Hypershell batteries came (both) at 6% charge, but it was enough to turn on and get started for setting up the device. I was able to turn it on and get it connected in the app, do the onboarding (walking you through the first mode changes etc and taking test walks around the house in the different modes) even with it in 6% low battery status.

But then I took it off and put it on the charger to charge it up. I used the same wall plug I use for my laptop, and that was sufficient for its 65W charge rate. It takes a little over an hour to charge the 72 Wh battery up to full, and the lights on the device itself will show you (4 lights) when it’s fully charged, or you can see it in the app. It’s handy to have it lit up on the device because my husband, without access to the app, can see and change batteries to charge the next one himself.

A Hypershell Pro X model worn over grey loose-fitting pants. This is a side view, so you can see the motor against my hip, the bar as it wraps around toward the front bottom of my leg, and the knee strap. In terms of getting set up and putting it on, it’s very straight forward. It gave me a starting suggestion to use for the waist size. I used that (and have never changed it), tightened up the waist strap and leg straps, and it was good to go from there. Once I got the waist strap tightened, I haven’t had to re-tighten or change that. I have had to tweak the leg straps a little bit here and there, partially because of how it slides around on my leg (see below re: sweating, chafing, and wearing in the summer as opposed to wearing it over a layer of clothing), but it’s quick and easy to tighten the leg strap or loosen it when needed and not a big deal adjustment wise. I did read a few people saying it slips down their hips and they got suspenders to help, but I haven’t had that experience (I’m female, so I have plenty of hip bone for it to rest against, and maybe that’s in part what makes the difference?). The first time I put it on, because I was adjusting straps, I put it on while sitting at the edge of a chair and getting everything set up and tightened, then stood up and tweaked the straps, then turned it on and began using it. Now, I can grab it and put on the waist belt while standing, then slightly lean over and attach each leg strap (so I don’t have to sit down to put it on). Because it carries the battery in the back and the design also has the support bar around the back, it’s not really comfortable to sit with for long if you want to lean back against the back of the chair, but it’s fine if you’re sitting down briefly on something (a chair, a bench, etc) if you’re not trying to lean back or sit up against the back of anything.

My first time using the Hypershell Pro X

I was conservative with my first time using the Hypershell, in part because of users in various groups warning about taking it easy and not overdoing it. (If you have no disease/physical limitation as your reason for wanting to use this, you can probably ignore this.) After it charged fully, I put it on and went for a short mile and a half walk to see how it felt.

I knew from the onboarding experience (where it has you testing different modes) that I didn’t need “hyper” mode turned on to walk. “Eco” mode is the base mode, and you can adjust the power setting either on device (pressing a button twice increases it by 25%, triple pressing it drops it by 25%) or in the app with a slider that allows you to adjust it 5% increments.

I tried 25% power for my first walk, which was enough to feel the lift pulling my thigh and knee up. It felt so good! It made walking feel smooth and easy, especially on the right side where my thigh/hip muscles are more impaired. It felt like it made my walk more balanced in terms of not slogging along on the right side compared to my gait without assistance. I noticed a sensation of a few muscles feeling activation that normally aren’t getting activated (this is probably unique to my situation), but had no soreness or issues right after or the next day as a result of this test walk.

The next day, I did my normal length walk (of about 4 miles) with the Hypershell.

The third day? I took it hiking. And…(more about this below)

Small hiccups with adaptive mode recognition (that may be unique to my gait)

I had my app set to ‘adaptive motion recognition’, which is where it detects what you are doing (e.g. walking, going downhill or down stairs, idling, etc) and adjusts the assist based on the motion. It takes a step to kick in any assist and it takes about 2-3 steps into a new pattern (e.g., starting to go down the stairs) to swap modes. This means if I was walking toward the stairs and starting to go down the stairs, it would be the second or third step down where I would feel it change into downhill mode where I could feel it providing resistance against my thighs, as opposed to lifting my thighs as I stepped down. It was also very noticeable when I got to the landing and would take the 2-3 steps to turn the corner and continue down the flight of stairs. It would feel stiff-legged like I needed to tip toe to walk and then just as it switched to walk mode, I was going down the next flight of stairs and again it took 2-3 stairs before it was back on down hill mode. Not a big deal, but it did make me aware of it. I went down the stairs (carefully) while looking at the app which shows which motion pattern it is detecting, so I was able to see (and not just feel) that it was switching those modes and that’s why it suddenly felt different.

The other hiccup was when I was out walking on the sidewalk, which is flat. It was in walking mode and I was indeed walking, when suddenly it threw a stiff legged resistance at me. Huh?! I looked at the app and it showed “downhill” when I was walking on a flat surface. Weird. It reverted back to walk mode after 2-3 steps. It happened again later on my same walk. I must have something weird about my balance or gait that leans backward (?) or otherwise causes it to sense downhill, so it shifts to downhill mode. It didn’t trip me but it did make me go “woah” and I didn’t love it because I wanted to just be able to forget and walk without thinking about wearing it.

So as a result, I decided to turn off adaptive motion recognition and use it in ‘manual’ mode, rather than having it auto-detect. I’ve used it in “walking” mode ever since as my default mode, and it works great. It also still auto-detects and shows you what motion it detects in the app, but even with over a dozen miles of flat walking, it’s not thrown the downhill resistance in unexpectedly again. And, even in walking mode it still provides enough support and resistance for actually going down the stairs/downhill, regardless! So I get the same benefits without the risk of the sudden incorrect downhill resistance.

Kicking the tires of the Hypershell Pro X with hiking. A lot of hiking. Three days in a row!

Before using Hypershell, I could still hike. I used to hike three days in a row almost every week, but with this muscle disease, I found myself not being able to easily do it, so I would often hike Friday, rest and do something easier Saturday, then do another hike (maybe) on Sunday. This has been true for the last 6 months (or longer).

But my first hike with the Hypershell was on a Friday, and it went great. I played around with using the adaptive motion recognition and found that I couldn’t tell a big difference in the assist with ‘uphill’ mode versus ‘mountain climbing’ mode versus ‘walking’ mode. Downhill mode was good, but I also tested going downhill while in ‘walking’ mode and found it was good enough. Since all of these mode changes have to be done in the app, and the exoskeleton itself covers my pockets in a way that makes it hard to get my phone in and out of my pocket (plus I’m carrying poles), I decided I would try staying in ‘walking’ mode for everything from flat to uphill to downhill…and it did great. I felt so much more at ease stepping up and over steps and rocks and powering up hills the way I used to, and I also was thrilled that the little bit of resistance to my thighs for downhill made it easier to step and control my downsteps. All of this increased ease and control somehow resulted in me not generating the ‘sick muscle’ feeling I have been getting in my legs and glutes after hiking. In fact, I felt like I hadn’t been hiking at all! I was so thrilled that we decided we would hike again with it on Saturday, a second day in a row.

I did wake up with really tight calves on Saturday…but normal hiking tight calves, the way I used to get after the first few hikes of a new season when my calves are out of shape for climbing. I was thrilled because that meant that I was activating and using my legs MORE (despite the powered assistance of the exoskeleton!) on that first hike. Tightness and all, we decided we would hike again, and we actually chose a longer second-day hike with reasonable elevation now that I felt confident I could handle more of it with the exoskeleton. And I could: the second hike was also great, and I left it in ‘walking’ mode the entire time on the way up, but did find that I wanted to use higher power settings (still in eco) as a baseline and increase it further for hills. I think I used 30-40% as my base power, then would increase it more for bigger inclines. The nice thing is that for downhill, you are using less power, so even with ⅔ or so of the battery used up on my first and uphill half of the hike, I ended up at the bottom of the second hike with just above 10% battery left because the downhill uses so much less battery. (I had it in ‘downhill’ mode for the way down, where it provides resistance on the way down but when you’re on flats it’s not lifting your legs much as it would in walking mode.)

That went so well that…we headed out for a third day in a row. My first three-day weekend in a long time! Again, we chose a long hike with more elevation than we ever would have predicted would be possible for even a second day in a row, let alone a third day. This time, I was feeling more overall fatigue (hello, three days of hiking in a row!) and so I started with 50% power (eco mode) and cranked it up on hills. I finally remembered that I could adjust power with the button on the device, double clicking to add 25% as I went up a hill and triple clicking once I was on a flat (to decrease it back by 25%), without having to pull out my phone and open it and navigate to the app and slide the toggle. That made it easier, because I could still do that with poles in my hand.

Because I was cranking up the power more on this third day in a row, I did run out of battery on this hike. This was in part because there was a pretty steep climb on our return route about 2 miles from the end (of an 8.8 mile hike), and I wanted to crank the power all the way up to 100% (still on eco). I managed to get the battery down to 10% about halfway up that steep climb, and when it hits 10% it still goes but it definitely decreases the output. So we stopped and swapped to the second battery (that I had Scott carrying in his backpack). It’s quick and easy to pop off and swap (I let Scott do it). I powered it on and it instantly reconnected to the app, I put it back on 100%, and cranked my way up the rest of the hill with relative ease. Then I bopped the power back down to 50% for the rest of the hike. One of the reasons I ran down the first battery is because on the downhill/return portion, I kept it in “walking” mode for more assist rather than “downhill” mode. Again, three days in a row meant I was more tired overall and my legs were tired (but normal tired, not disease-tired), so I wanted the extra power to make sure I kept good form and didn’t cause injury by doing an atypical gait in my fatigue.

And I didn’t – I finished the hike, tired (normal tired) and with legs feeling in no way like we had hiked for three days, even though we did.

In three days in a row (which I can’t do without the Hypershell), we hiked 25 miles and over 6000 feet of elevation gain (which I wouldn’t be able to do without the Hypershell).


Instrument of freedom, indeed.

A view of me walking on a trail through an alpine meadow (green grass, flowers) with the mountain I hiked in the background and bright sun against a clear blue sky. I'm on the trail through the meadow and at first glance you may not notice it, but if you look you'll see black straps above the knee, which is the Hypershell strap, and you can also see the bar that goes around the back of my hips with the black battery, and you can also see the motors on the sides of my hips. But at a glance, you may not even notice it.
A view of me walking on a trail through an alpine meadow with the mountain I hiked in the background. At first glance you may not notice it, but if you look you’ll see black straps above the knee, which are the Hypershell straps, and you can also see the bar that goes around the back of my hips with the black battery, and you can also see the motors on the sides of my hips. But at a glance, you may not even notice it.

Did I keep the Hypershell Pro or did I return it? Is it worth it?

By the middle of the very first day of hiking, I knew I was keeping the Hypershell.

It works so well for me, and it really is an instrument of freedom for me. I love walking even on my flat paved trails with it, again because it makes my right hip and leg movement so much closer to what I used to experience (before my muscle disease).

Between my daily walks and the first two weekends of hiking, I have put around 60 miles on foot with the Hypershell Pro.

I’m definitely keeping it. It will be interesting to see if I run into any issues with my high-mileage use. The warranty is supposed to last for a year, and the website estimates ‘normal use’ service lifetime is 3000 km (1,900 miles). If I kept up my current pace of use (averaging 60 miles in two weeks) for a year, that would be around 1,560 miles, still under the expected lifetime use. I’d probably run into that life expectancy (which doesn’t mean it’ll stop working but might be when I expect it to run into issues) in about 14-15 months (or less if I increase my mileage).

But given how much it empowers me to move in the ways I want to move… it’s worth it. And I’m excited to see what other exoskeletons are coming to the market in the future, too. There may be more options for me to consider when this one eventually breaks or wears out.

Does it help with downhill or going down the stairs?

One of the things I really was hoping the Hypershell would help with is going downhill. I have trouble exerting power all the way through my foot, which is really noticeable when I am going downhill on looser dirt or rocks, where it feels like my foot is likely to slip sideways and cause me to jolt/lose my balance. As a result, my downhill hiking became as slow as the outbound uphill hikes (instead of faster, which is common for many people and the way it used to be for me) and made me really rely on my poles for balance. Plus it was super stressful and made hiking less fun, and I also skipped a lot of hikes that had a lot of rocky steps or rocky and loose rock downhill gravel terrain. But because of the Hypershell experience on my first hike, I actually chose a pretty rocky hike for the second hike because I was hopeful that it would help my sure-footedness. And it did! So much so that my second weekend of hiking, I chose a 9 mile hike with 3,100 feet of elevation gain that had a two mile stretch of loose rock and loose dirt with a good portion (1800 feet) of the downhill elevation. And I did great, with the Hypershell on.

But I didn’t know it would help when I got it. A lot of people talked about how it ‘didn’t help going down stairs’, so I had low expectations. When I went down stairs the first time, I didn’t notice a big difference, but when I hit the landing and took those 2-3 steps toward the next flight of stairs, I could feel that stiff legged feeling that definitely indicated it was providing resistance! So it was doing SOMETHING, but sometimes it was hard to tell what it was. Over time, with more experimentation on stairs and testing ‘downhill’ and ‘walking’ mode on different downhill terrains while hiking, I realized that I could feel the thigh-based resistance more strongly when in a higher power setting. The way it seems to work is it either provides some kind of down force against the leg as you are stepping down, or it provides resistance against your leg movement. I’m not quite sure which it is, but it results in a bit of pressure against your thigh, and probably some resistance on the sides (to limit lateral movement while stepping down), and it definitely helps me.

The other way I’ve figured out how to notice it is that with higher power modes while walking (and in walking mode), you can feel the lift ‘up’ from the thigh but depending on how quickly your leg is moving you can also feel the bar pushing back down into the down step. So the motor is able to move the bars (and thus your thighs) both up and down, and that’s likely also similar to what’s happening in downhill/stairs mode, but it’s less noticeable because you don’t lift your thigh as high (or at least, I don’t) when stepping down and it’s a much subtler force against your legs. But if you have stairs with landings, that’s a great place to put it in downhill mode and feel that type of sensation when you get to the landing and take a few steps before you do the next flight of stairs down.

There is also a setting you can adjust call “hill descent control” and once you toggle it on, you can adjust it between ‘weak’ and ‘strong’ (defaults to the middle of that range). I turned mine on but haven’t experimented with adjusting the slider to be stronger, but that may be another reason why I notice a benefit on downhills, whereas other people may not have turned that on.

Is it annoying to charge?

You have to charge the battery on the device itself (with a USB-C cord, and as I mentioned a beefy enough wall charger) or in a special hub that doesn’t come with it. The special hub can charge 4 batteries at once, off-device. Mine came with two batteries and since they charge up in an hour-ish, even if I run both batteries down and get home, it’s always going to be 12+ hours before I want to use it again and that’s plenty enough time to re-charge everything, even with swapping to the second battery to recharge.

I can see how if I went to having 3 batteries and using them regularly that I might want to also get the multi-battery charger, but for 1-2 batteries and my usage, it’s generally not a big deal.

Is there anything I don’t like about the Hypershell Pro X?

I have two (ok, three) issues with the Hypershell. All are minor.

For me, the adaptive motion recognition setting triggering ‘downhill’ when I am walking on a flat surface (albeit randomly and only occasionally) is annoying. Again, I don’t know if it is because of my gait or if there’s a bug in the pattern recognition. There is a workaround – putting it in ‘walking’ mode. I have found that it’s totally fine to keep it in ‘walking’ mode when going up or down stairs, up or down hills, on varying terrain, on flat surfaces. It still provides the lift to pull my thigh up just fine, and it also does the ‘resistance’ force for downhill and down stairs the same (or very similar) to the actual downhill setting. If I want to do more, I can easily turn the power up or down using the on-device button and get more force (for either lifting or resisting), and that is faster than trying to swap modes on my phone.

The second issue is chafing against bare skin. Ohhh, the chafing. You’ll notice that all of the pictures on their website and videos are of people wearing it over pants for winter-type activities. Some people hike in pants during the summer, but I got mine in July and I don’t wear long pants to walk or hike, so the straps around my thighs are against bare skin. I didn’t have any issues for the first few walks (which were all around an hour) but my first hike, which was 3 hours, caused some chafing. So on the second day, I covered those spots with bandaids. It wasn’t enough, I ended up with more chafing spots. So on the third day, I tried putting kinesio tape on my legs where I thought spots would chafe or were already chafed. That did help, but because I’m hiking so long (3-4 hours, multiple days in a row), just like ultrarunning in dealing with pack chafing, it’s hard to deal with once you have chafed spots.

The second week, I tried additional solutions. First I tried wrapping the pads themselves with “adhesive bandages” (think ‘vet wrap’, the stretch stuff that can stick to itself). I was trying to see if just covering the back of the front thigh pad would work, because there are seams underneath it. That helped some, but the force of the corner of the pad itself was chafing. I then bought a roll of 5 inch “tubular bandages”. I got 5” because I have more muscular thighs and I wanted to try putting a piece on my leg like a leg sleeve, and then having the pads against that, so it would rub against the bandage and not my skin. It helped some, but it was still digging in at the corners. So then I tried the leg bandage sleeve AND adding a layer of that material over the pad, double wrapping it at the corners. It helped some. But again, because I already had chafing, I don’t quite know what would work best to completely prevent or eliminate chafing. (I also have tried a 4 inch tubular bandage that was black, to better blend in with the leg strap, because the 5″ worked well but really popped in color and drew the eye to my legs, whereas the black better matches the leg bars and leg straps. In terms of functionality, I like the 5″ tan color better for using as a leg sleeve actually on my leg, so I’ll probably use that as a base layer if I’m not taping as described below when I’m not actively chafed, and then use the black on top of the leg pads and around the buckles directly.)

The next thing I have tried is hydrocolloid bandages (example, there are a lot of different brands and sizes and I’ve found no difference between name brand and off brand versions) on top of the biggest already-chafed spots, with the idea that it will provide cushion and also the pad corners will be more likely to slip on that versus digging in at the exact same spot. Because hydrocolloid (“blister” bandages) stick directly on the skin, I added a bit of neosporin on top of the chafing before applying, so that the bandages don’t stick to the slightly raw skin. The challenge with hydrocolloid bandages is that they take up any fluid, like blister fluid, but also sweat – so as you get sweaty, they’re more prone to peeling up or getting rubbed off via the edges. If you have a big enough bandage that’s less of an issue, but don’t expect to be able to cover a tiny area with a tiny hydrocolloid bandage and not have it peel up from the friction of the leg strap/pad itself or have it start to come off from sweat. I also tried applying larger strips of kinesio tape on top of the hydrocolloid bandages that are smaller, and the hydrocolloid seems to provide a nice cushion against the already chafed spots and the kinesio tape helps prevent it from rubbing the hydrocolloid bandage off.

It’ll be better in winter, when I’m wearing it on top of a layer of pants, and it’s not a reason to stop using it. In fact, most people probably won’t wear it long enough even in hot weather to experience it, but I wanted to document some of the solutions I tried in case anyone else does run into it.

The third minor issue is accessing my pockets. The motor is on the outside of my hips and although the bars curve around down the front of my thighs, the access to my side pockets on my shorts is blocked. This is where I typically store fast-acting carbs on one side (because I have type 1 diabetes) and my phone on the other side, but I basically have to stop walking and pause and really finagle my hand in under the motor and bar to access something in my pocket. It’s annoying, so I actually stopped carrying my phone in my pocket while wearing it. I decided to get a phone carrying case that mounts to a backpack strap – or in my case, a Hypershell waist strap! It lives on the strap and I’m able to slip my phone into the 4 corners whenever I want to. I also like that the webbed strap comes out of the case, so I can pull my phone off it and use it (while it’s still in the straps) and then quickly put it back on the belt mount. There’s a little more friction to the experience than without the Hypershell, but it’s 5x easier than finagling my phone out of my pocket under the Hypershell.

If you want a referral code for a Hypershell, here is a referral code.

Right after I bought my Hypershell, I automatically got an email for a referral program. If you use this code, and you buy a Hypershell, it gets you $30 off. It’s not a lot, but it’s better than nothing. Sometimes they run deals where you can get accessories for free or some dollars off particular accessories. The ones I’ve seen are usually for more than the value of the referral code – e.g. they might offer an additional battery which is a $99 value instead of the $30 off. Depending on your situation, you may like one or the other better. I mention it because it doesn’t seem like it’s compatible to use the $30 off referral code at the same time as the other deals (or it wasn’t at the time that I tried to use someone else’s referral code at the time of my purchase).

Referral code (click this to generate the $30 off code which you use at checkout on Hypershell’s site): https://hypershelltechglob.refr.cc/referral30/u/danalewis

Should you get a Hypershell? Why or why not?

My experiences above are as someone living with an autoimmune disease that is affecting my muscles. But now that I’ve gotten it and tried it, I think I would love it even without the need for assistance with my muscle disease. Why? It’s like an e-bike for the legs. Not in the sense that it can do all the work (it can’t, it can only provide up to 20-30% assistance: you’re still doing a lot of work), but because it is an equalizer.

My husband and I have had e-bikes for years. We loved them, because of the equalizing effect. I can bike longer with e-bikes than I would without an e-bike. In fact, before we got e-bikes, we didn’t have bikes and would only sporadically ride (rentals), because biking wasn’t my thing. When we got e-bikes, we biked for dozens of miles at a time, together. I could bike at whatever power assist level I needed or wanted for the day, and he could use less assist and get more of a workout, but it enabled us to bike together (and to WANT to bike together) in ways that we couldn’t or wouldn’t otherwise.

An exoskeleton is the same situation, roughly, as e-biking in this sense. I talk to several people who ask questions when I’m out walking or hiking with the Hypershell on. Sometimes people ask about it for bad knees (I don’t have knee problems but I can imagine it would help – if you have knee issues and Hypershell experience, please share in a comment below!), but a few people have asked about it for backpacking experiences. One couple immediately said “I wonder if this would help for backpacking” and I said probably, yes – because the company advertises it to be able to do more for longer, especially with gear (e.g. they show people hiking with photography gear or big backpacks). So even without medical conditions, I could see getting a lot of use out of it when you have a pair of people who have different capabilities or range who want to go adventuring together. Especially if you’re a set of people (or an individual) who like to put in a lot of miles throughout the year…just like I am. I’ve already done 5 hikes in two weeks (plus a bunch of paved walks) and just hiking alone, that takes the per-hike cost down to $240, and will drop further each time I use it – remember that I wouldn’t have done some of these hikes at all (either because I couldn’t do them in subsequent days or I couldn’t do particular terrain at all). That per-hike cost will continue to drop over the course of the year (or more) of use that I expect to get out of this Hypershell Pro X.

How much work are you really doing when you wear a Hypershell exoskeleton? Doesn’t it do all the work for you?

Each of the two Hypershell batteries I have are 72 Wh (5000 mAh). That’s…actually not that much. It’s the equivalent to ~62 kcal if you’re thinking about food calories as a comparison. If you could continuously run the motors at full power, it would d only last 5-6 minutes. (That’s why I ran it down fast on 100% power on a really steep hill at the end of my third hike). With less power output, it goes longer time/mileage (e.g. the around 10 miles range estimation on lower power setting in eco mode), but it’s still only 62 calories of total energy, whereas I might be burning the equivalent of 1000+ calories of active energy in the course of a 3-4 hour hike. Yes, it provides power, but it’s targeted power to your legs (and there’s also heat loss), and you do a LOT of other work controlling your trunk, hips, core, arms, balance, etc. so it maybe contributes to 10-20% of energy savings. But again, you’re likely to do more – remember the e-bike analogy – and burn a lot more than you would without the Hypershell by doing more, well above and beyond anything you saved by using the Hypershell. You still do 90% of the work, for longer time and longer mileage and more elevation, resulting in more effort overall. You will still do plenty of work, but it will be easier to go further, longer, etc.

TLDR: I got a Hypershell Pro, I love it, and it’s enabling me to do more than I could before (in my unique situation with a muscle-related autoimmune disease). I do recommend it, for a variety of different situations, whether or not you have any physical limitations. It’s an instrument of freedom for anyone who wants it.

Feel free to ask any questions below. I can’t answer questions specifically about whether it would work for your specific setup or medical condition, but I can try my best to generalize from my experience & what I’ve read from others online.

Powered exoskeleton is an instrument of freedom (my experience with a Hypershell Pro X), a blog by Dana M. Lewis on DIYPS.org

IUD insertion or IUD replacement is more manageable with a paracervical block

If you’re someone who is considering an IUD (intrauterine device) or has an IUD and is considering a replacement or the removal process, this post is for you. You should know about this! Feel free to share it with a friend.

I recently decided to replace my IUD. I was dreading it, because I found the insertion process the first time I got one to be the most painful thing I had ever experienced. For context, years later I massively broke my ankle in 3 places. I now am able to articulate that the pain level of an IUD insertion, for me, is like broken bone level pain inside. It “only” lasts for a few minutes at that level, but nevertheless, it is excruciating.

When I was due for my first ever replacement (swap), I asked my doctor’s office if there were any better pain management options than what I experienced for the insertion process. They told me no, the only thing they could offer was an oral medication I could try to soften the cervix. I took it in advance as directed, and also took full doses of ibuprofen and Tylenol, went for the swap process and…it was just as bad as the first insertion, even though I had previously had one. Ugh.

The good news related to IUDs is that they keep getting extended, in terms of how many years they are approved for birth control efficacy. Mine went from 5 years approval to 8 years approval, so I was looking forward to having more years in between the terrible experiences. However, my experience was that this time around when I reached a little over 5 years (fully expecting to go to 8 years with it), my period bleeding picked back up to a degree that I decided I would go ahead and swap to a new one. (Birth control-wise, they’re approved for 8 years, but the approval indication for heavy bleeding is still at 5 years, so it makes sense that some people who see a reduction in period bleeding on IUDs may see a return after that 5 year timeframe. Not everyone, but some will, and I did.)

So that’s why I was going in to get a replacement, at about 5.5 years from my last one. This time, I had a new provider’s office, but since my last office couldn’t offer me any reasonable pain mitigation, I didn’t bother asking in advance and just went in with an active dose of Tylenol in my system, mentally prepared for the pain.

But then, at my appointment when going over the risks and discussing any questions I had before the procedure, my new provider said “what pain mitigation would you like?”

I said: “What? You’re offering me something?!”

And yes, there are options and she did offer them! She talked about ibuprofen/Tylenol (I already had taken Tylenol), a hot pack for the stomach, or something called a paracervical block. It’s an injection, so she asked how I felt about needles. I laughed and told her I had type 1 diabetes (the implication being, I deal a lot with needles and regardless of what I feel about them, they keep me alive so I am used to dealing with them).

The side effects of this paracervical block include potentially experiencing ringing in the ears and a metal taste in your mouth, plus obviously the potential pain from the injection itself.

I quickly evaluated my thoughts – I didn’t think it would help (because softening the cervix previously didn’t help), and I didn’t love the idea of a block. That’s because my previous ‘nerve block’ type injections, such as when at the dentist, result in a LOT of pain for me for the injection. But, then again, the IUD replacement process is even more painful, so I thought for the small chance that it would help cut down on that pain, it was worth trying at least once. So I said yes.

While she was getting set up, I asked her if this was new (because I was surprised I hadn’t heard of it) and she said no, it’s been around but early research showed it wasn’t much more effective than placebo so it didn’t really pick up in clinical practice, but that later studies DID show efficacy of it. (I later looked that up and she was right – there’s a 2012 study showing similar efficacy on pain reduction to placebo, aka around 30%); whereas international studies and a later 2018 study with an increased dose DID show pain reduction for more people.) And we all know it takes time for things to translate to clinical practice (see this visual and imagine it as a game of telephone), so knowing this now helps me better understand why in 2015 (my first insertion) and 2020 (my first replacement), this was not an option offered to me by my old clinic. I don’t like it, but I understand the context better.

What the experience of a paracervical block was like

The first step was a numbing spray. Then came the injection. Maybe because of the numbing spray, it didn’t feel like an injection the way I normally experience injections for nerve blocks. I felt a minor pinch and a little bit of pressure from the fluid going in. I was surprised that it took a few (it was injected into several areas) and I was borderline slightly uncomfortable, not in the sense that I was going to ask her to stop, but I was ready for that part to be done. (And probably anticipatory pain for the actual removal/swap process). But it was done and then I realized, this was nothing like the other injections for nerve blocks and it was indeed very tolerable.

(Side effect wise, I did not experience ‘ringing’ in my ears, but I did feel like I could hear more easily (e.g. sounds in the room suddenly got louder). Afterward when I got up, I did feel a little odd for about 60 seconds, but that could have also been because I was laying down and then hopped back up (see below) pretty soon after. I didn’t have any taste in my mouth, and the ‘louder sounds’ didn’t persist beyond a few minutes. None of the side effects phased me nor would influence my decision to get another one.)

Then it was time for the IUD removal. She asked me to cough and I did while it came out. It felt uncomfortable like a pinch with friction, but it wasn’t stabbing excruciating pain. It wasn’t “sharp” feeling like pain. I breathed a bit while she got ready to do the insertion of the new IUD and she asked me to take a few deep breaths. I did, and the IUD was inserted. Like the removal, it felt slightly uncomfortable, but again more like friction, and it was less than the removal.

No excruciating, stabbing pain!!!

She was done, and I immediately sat up and told her the paracervical block helped, I was so glad I had done it, and now I wasn’t going to dread my next swap.

Previously, for my first insertion and my subsequent first swap, it took me a minute or two of laying there, breathing deeply, to recover from the intense, excruciating pain. I would be able to get up and get dressed and leave on my own, but it definitely was an intense full body experience that required a few minutes and then I would feel like I had to recover from it (psychologically) the rest of the day. And obviously carry that experience 5 years forward.

In contrast, I immediately sat up and was ready to get dressed and go. I didn’t need to recover. I left and drove home in great spirits, then started texting everyone I know who had IUDs that it was a jaw-dropping, wildly different experience and they should look up paracervical blocks and when it’s time for swap/replacement IUDs, ask in advance if their doctor/clinic offers it and shop around for somewhere that will offer it if not. It is THAT wildly different of an experience. I hate making phone calls, but I will 100% make as many phone calls as it takes in the future to make sure I always have this option. It took the painful experience from broken bone level pain (e.g. 9-10/10 excruciating pain) to a tolerable discomfort with only a little bit of pain (e.g. 2-3/10 experience). I say that as someone who was told by an ER doc while he was setting my ankle, broken in 3 places, that I have a high pain tolerance.

The other benefit of the paracervical block is she said it helps reduce cramping for up to an hour. And it did! I made it home before I started to feel cramping (like strong period cramps), almost exactly an hour after the injection. I continued to alternate between Tylenol and ibuprofen the rest of the day, but this was like managing a period, and I didn’t have any pain hangover from the injection or the IUD replacement process. (Again, previously it felt like it took me hours to recover from the experience, when I had it without the paracervical block).

IUD insertion (or IUD replacement) is more manageable with a paracervical block, a blog post from Dana M. Lewis on DIYPS.orgNot everyone finds IUD insertions or replacement to be excruciating. If you don’t, I’m so glad for you. But my experience was that it’s the most painful thing I’ve ever experienced. Over half the people I talk to with personal experience also say it is incredibly painful. So if you are one of the people, like me, who find IUD insertions or IUD replacements to be a terrible, painful experience…ask about a paracervical block. It makes an incredible difference and I’m now not dreading the replacement or future removal.

(And if you have any other questions about the experience that I can answer, happy to do so – leave a comment below.)

Exhausting and familiar, the experience of living with autoimmune diseases

A new autoimmune disease is exhausting and foreign, until it becomes exhausting and familiar.

Exhausting is such a good word for it. Sometimes, it’s the disease process itself that is exhausting and causes fatigue physically. Other times, it’s the coping and figuring out how to wrangle your life into a pretzel around it that is exhausting. It’s exhausting continually finding new things that are changing, out of your control, that you have to adapt to both physically and mentally. Sometimes, it’s exhausting trying to explain to others how it affects you and what you need support-wise, especially when it doesn’t come with a clear name, a neat bow, and an easily explainable narrative about what the trajectory will look like. Because you don’t know. You don’t have answers, and it’s exhausting to deal with the unknown and uncertainty.

On the flip side, it’s also exhausting when you don’t talk about it. It’s exhausting to be dealing with it, struggling to adjust, and not talking about it. Because of stigma, because of concern about how other people will treat you differently (even if well-intentioned), because you don’t have answers or a name and can’t fully articulate what is going on in a way other people will understand, because you worry about how it impacts the people you love and whether you’re an anchor holding them back.

Sometimes that also means it’s exhausting to articulate to your healthcare providers. I am lucky that my healthcare providers listened to me and believed me, even when I was coming from a high state of health and physical fitness (e.g. cross country skiing for 6 hours, run/walking ultramarathons, exercising every day, etc) and respect that when I said “I can’t run and press off through my ankle and now it feels weird in my thigh and to lift my hip, and my hands are now weak”, that it was indeed a problem, even when my bloodwork and other biomarkers and clinical exams were mostly normal. (Except for my lungs, the canary in the coalmine for me, and a few sporadic blood biomarkers showing immune shenanigans, most of my data makes me look like the healthiest horse standing outside of the glue factory. I look sick compared to healthy horses, but I look too healthy compared to the horses going into the glue factory. So to speak.)

It’s exhausting to not gaslight myself, coming out of doctor’s appointment after doctor’s appointment where they repeat “you remain a mystery” while also doing everything they can to help to try to diagnose the exhausting, now-familiar thing that evades naming, evades mechanistic understanding, and evades effective curative treatment. They’re doing everything they can despite the fact that they can’t provide answers. Nor can I. I have to hold on to my data (experiential, lived, wearable, and the few lab results and pulmonary function testing that clearly show the level of the problem) tightly and push back against gaslighting myself.

But while it’s all exhausting, it has slowly shifted from foreign to familiar.

I am grateful for the familiarity in a way, because with familiarity comes a newly developed language to put words to the indescribable; a reinforced skill for adaptation and new ‘hacks’ and discovered instruments of freedom; and a commitment to find the glimmers of joy buried under all the exhaustion.

My newly developed language is evolving, because I constantly test this new language on my family and friends in the know. I have to differentiate how this impacts my muscles, especially because I come from a land of ultrarunners who specifically train in discomfort for the purpose of being able to tolerate discomfort in endurance activities. When I say something bothers me, it means it’s intolerable and not what a healthy body would experience in terms of discomfort. I know what tired, sore muscles feel like (hello, 82 miles of run/walking or 6 hours of cross country skiing 50 kilometers/31 miles) and what acute muscle damage feels like from physical activity. This is not that. It’s struggling to initiate a muscle movement, but still being able to move, even though it progressively feels like moving through jello. It’s not something that anyone I know, or I when healthy, experienced, and so I have to figure out and evolve the ways to describe it. Mostly, I found success in describing the consequences of what is happening, when I can’t run and I find it more challenging to walk and hike, even though I can still do those things. Those are things that people can understand, and understand that it’s important to me that I can’t do them and/or that these activities are immensely harder to accomplish, even if they don’t understand the sensation causing that outcome. I can generally describe having an autoimmune disease that affects my muscles, and that’s enough (people understand autoimmune diseases) to be understood.

Like Icarus flying too close to the sun (analogy at top of mind from recently reading to my nephew a Percy Jackson book…), it’s like my muscles are melting, but not to the point of my falling into the ocean. And that’s where healthcare providers most usually see patients, when they’re about to or have hit the ocean when their wings (muscles) fully stop working. I am still flying, but less high, a little melty, a little wonky. I know something is clearly wrong and I see the ocean and where things will go without a solution. But even by flying lower (aka, doing less, stopping running, etc), I’m still melting – it’s still happening, and limiting my physical activity or activities of daily living doesn’t change the trajectory.

Thus, the reinforced skills for adaptations. I learned a lot from my decades of type 1 diabetes and having to “DIY” things myself outside of the healthcare solution. I’m more quick to go from “ugh this is a problem” to wondering about possible solutions. This is everything from changing how I sit (different chairs, with cushions) or lay down to work (with my laptop on a stand to reduce neck muscle strain and a separate bluetooth keyboard and trackpad so I can iterate positions as needed) to bracing early and often (ankle braces, a back brace, a foam neck brace) to a variety of things to lower the challenge to my hands. This includes using little slide tins for meds instead of flip top containers, because even the easy to open containers sometimes bother my hands. I also found a ski carrying strap so I can carry my cross country skis in the winter over my shoulder with the strap, rather than holding them in my hands. Sometimes I ask Scott to make my dinner or prep things (like cutting fruit in advance) so I don’t make my food choices based on not wanting to use up my hand energy to prep the food rather than for eating it. (Ongoing shout out to Scott, who epitomizes the ultimate supportive partner/husband and if he gets annoyed at anything, it’s my occasional hesitation or resistance of wanting him to ask him to do more, because I worry about asking him to do much. He recently spontaneously reminded me that I am a sail…and that always helps.)

It’s important for me to also remember that every bit helps and it doesn’t have to cure but that doesn’t mean it won’t help. Because the help adds up. But it requires pushing back the mental knee-jerk response of saying “that won’t help” because it’s not a cure for the root of the problem. Nope, no cures here. But that doesn’t mean a little bit of help for a little corner of the problem isn’t worth trying. Usually, 2 out of 3 times that little bit of help is a huge relief and reduces the physical burden, even if it’s ‘small’ like something for my hands. Sometimes it’s only a little bit of a help, and so we keep looking for better solutions for that particular challenge. Sometimes I can’t adapt a solution and I adapt my behavior. But my success rate has gone up, and that is great knowing that I can adapt solutions to fit my needs, even though sometimes it gets overwhelming to think about the volume of adaptations, especially when comparing it to a few years ago of how I lived and locomoted and worked.

Because the adaptations mean I can continue to find the glimmers of joy in life. No, I can’t run and I hike and walk more slowly, but I can still get out into the trees and under the blue skies and sunshine and feel the breeze on my face as I move through space. On days I choose to rest, I can sit out on the porch, sometimes braced, sometimes reclined in a chair with pillows, and watch the kittens sun themselves or jump up and stretch out on my legs. I can still spend time with family and friends, enjoying what I can still do with my ten niblings (nieces and nephews) and honorary niblings in my life. I can remind myself that while it feels like I’m falling out of the sky and I am dipping down, I have (hopefully) miles to go before I hit the ocean and stop flying at all. The delta in altitude sucks, especially in comparison to what I could do before, but with less comparison I can find more glimmers of joy both now and on the horizon. There is still a lot I can (and do) do, even as the list of things I can’t do or must adapt grows.

Exhausting and familiar, the experience of living with autoimmune diseases, a blog by Dana M. Lewis on DIYPS.orgIf you find yourself in the exhausting-but-foreign space of a new or suspected autoimmune disease, it sucks. I’m sorry. I wish I could help. (And if I can help you, let me know). But I hope it helps you to know that you are not alone. That yes, it does suck, but there is some solace when it turns from completely foreign to somewhat familiar, even if that doesn’t mean that it got easier or got better. But maybe it’ll be more known, maybe you’ll find more adaptations, and maybe you’ll still be able to find some glimmers of joy.

I did (I have), and I hope you do, too.

What bends and what breaks and the importance of knowing the difference as a patient

As a patient, navigating healthcare often feels like decoding a complex rulebook. There are rules for everything: medication dosages, timing protocols, follow-up intervals. Some of these rules matter a lot, for either short term or longer term safety or health outcomes. But at other times… the rules seem senseless and are applied differently based on different healthcare providers within the same specialty, let alone across different specialities. As a patient, it’s easy to initially want to try to follow all rules perfectly, but feel unable to because the rules don’t make sense in a personal context. Over time, it can be hard to resist the conclusion that the rules don’t matter or don’t apply to you. The reality is somewhere in between. And it’s the in-between part that can be a challenging balance to figure out. Learning to navigate this balance requires understanding which rules are flexible and which aren’t.

I’ve learned there’s enormous value in digging into the “why” behind medical recommendations, when I can. Take acetaminophen (Tylenol), for example. There’s a clear, non-negotiable daily limit on the bottle because exceeding it is dangerous. The over-the-counter recommendation for Extra Strength acetaminophen (500 mg tablets) is no more than two tablets every six hours, not exceeding six tablets in 24 hours. Which actually means 3 doses per day, despite the 6 hour recommendation. This maximum daily limit (no more than six tablets) is set close to the safety threshold; exceeding that limit (eight tablets in 24 hours) increases the risk of severe liver damage.

Understanding this daily limit provides flexibility within safe boundaries (with the obvious caveat that I’m not a doctor and you should always talk to your own doctor). The “every 6 hours” recommendation ensures stable bioavailability of acetaminophen throughout the day, and making sure over the course of 24 hours that you are safely and completely below the max dosage line. Slight deviations to timing, such as taking a dose at 5 hours and 30 minutes instead of precisely 6 hours because you’re about to go to sleep, do not inherently cause harm, as long as the total intake remains within the safe daily limit. This is an example where a compliance-oriented guideline is designed primarily for optimal adherence at the population based level, rather than marking an absolute safety threshold at each individual dose.

There are a lot of things like this in healthcare, but it’s not always explained to patients and patients may not always think to stop and question the why – or have the time and resources to do so – and figure it out from first principles to decide whether a deviation on the timing or amount is risky, or not.

But many healthcare rules aren’t as clearly defined by safety, as is the case of the acetaminophen example. Other rules are shaped by convenience, compliance, and practical constraints of research protocols.

Timelines like “two weeks,” “one month,” or “six months” for follow-up visits or medication titration points often reflect research convenience more than physiological necessity or even the ideal best practice. These intervals might mark study endpoints, or convenience to the healthcare system, but they don’t necessarily pinpoint the best timeline overall or the right timeline for an individual patient. It can be hard as a patient to decide if your experience is deviating from the typical timeline in a beneficial or non-optimal way, and if and when to speak up and try to better adjust to the system or adjust the system to meet your needs (such as scheduling an earlier appointment rather than waiting for a mythical 4 month follow up when it’s clear by months 2-3 that there is no benefit to a treatment because any impact should have been observed by then, even if it wasn’t significant).

As a patient, understanding when rules reflect safety versus when they’re crafted primarily for convenience is crucial, but hard. Compliance-driven rules can sometimes be thoughtfully bent. They might be able to be adjusted to better fit individual circumstances without compromising safety. For instance, a medication schedule set strictly every eight hours might be modified slightly based on daily activities or sleep patterns, provided the change remains within safe therapeutic boundaries over the course of 24 hours. (And patients should be able to discuss this with their doctors! But time availability or access may influence the ability to have these conversations up front or over time as conflicts or issues arise.)

Yet, bending rules requires confidence, critical thinking, and often significant resources, whether those are educational, emotional, health itself, or financial. It means feeling secure enough to question a provider’s advice or advocate for adjustments tailored to individual needs. It’s not always even questioning the advice itself, but checking the understanding and interpretation of how you apply it to your own life. Most providers understand that, and have no problem confirming your understanding. Other times, though, it can accidentally or unintentionally cause conflict, if providers sometimes perceive questioning of their judgement.

I’ve tripped into that situation at least once accidentally before, when I had a follow up appointment with a non-MD clinical provider who wasn’t my main doctor at the practice, who I was seeing for an acute short-term issue. She was describing a recommendation for an rx, specifically because I have diabetes. In the past, I have received over-treatment from most providers because of having type 1 diabetes, because many recommendations for non-diabetes management that have guidance for people with diabetes are based on an assumption of non-optimal healing and non-optimal glucose management. Given that at the time I was already using OpenAPS, with ideal glucose outcomes for years, and no issues ever with reduced healing, I asked if the prescription recommendation would be given to the same type of patient without diabetes. I was trying to help myself make an informed decision about whether to accept the recommendation for the rx to determine if it was appropriate. If it was just because I had diabetes, it warranted additional discussion. It wasn’t about her clinical judgement per se, but about a shared decision making process to right-size the next steps to my individual situation, rather than assume that population-based outcomes for people with diabetes were automatically appropriate. Because of my experience, I know that sometimes they are and sometimes they are not, so I’ve learned to ask these questions. However, some combination of the lack of existing relationship with this provider; perhaps a poorly worded question; and other factors made the provider act defensive. I got the information I needed, decided the rx was appropriate for me and I would use it, and went about my business. But I got a follow up call later from another MD (again, not my MD) who was defensive and calling to check why I was questioning this non-MD provider and it came across as if I was questioning her because the provider was a non-MD…which was not the issue at all! It was about me and my care and making sure I understood the root of the recommendation: whether it was because of the health situation or because I had diabetes. (It was the former, about the health situation, although initially articulated as being simply because of the latter fact of simply having diabetes.)

This situation has colored all future encounters with healthcare providers for me. Seeing new providers who I don’t have a longstanding relationship with makes me nervous, from learned, lived experience about how some of these one-off encounters have gone in the past, like the ones above.

Unfortunately, patients who push back against compliance-driven rules or simply ask questions to facilitate their understanding risk being labeled “non-compliant” or “non-adherent”, and sometimes we get labels on our chart for asking questions and being misunderstood, despite our good intentions. Such labels can have lasting impacts, influencing how future providers perceive our reliability and credibility and can cause subsequent issues for receiving or even being granted access to healthcare.

This creates a profound dilemma for patients: follow all rules precisely, without question, but potentially sacrificing optimal care, or thoughtfully question to bend them and risk being misunderstood or penalized for trying to optimize your individual outcomes when the one-size-fits-all approach doesn’t actually fit.

Breaking compliance-oriented rules isn’t about defiance. At least, it’s never been that way for me. It’s about personalization and achieving the best possible outcomes. But not every patient has the luxury of confidently navigating these nuances, and even when they do, as described above, it can still sometimes turn out not so well. Many patients don’t have the time, energy, resources, or privilege required to safely challenge or reinterpret guidelines. Or they’ve been penalized for doing so. Consequently, they may remain strictly compliant, potentially missing opportunities for better individual outcomes and higher quality of life.

Healthcare needs to provide clarity around which rules are absolute safety boundaries and which are recommendations optimized primarily for convenience or broad adherence for the safe general public use. Patients deserve transparency and support in discerning between what’s bendable for individual benefit and what’s non-negotiable for safety.

What bends, what breaks and the importance of understanding the difference in healthcare. A blog post by Dana M. Lewis from DIYPS.orgAnd: patients should not be punished for asking questions in order to better understand or check their understanding. 

Knowing the difference on what bends and what breaks matters. But many patients remain caught in the delicate balance between bending and breaking, carefully evaluating risks and rewards, often alone.

When Life Pelts You with Lemons

“When life gives you lemons, make lemonade.”

A friendly raccoon holds a baseball bat at home plate, while a lemon comes out of a pitching machine. There are a few lemons on the ground nearby. It sounds nice. Hopeful. Productive. It implies the lemons are gently handed to you. They’re probably clean, ripe, and maybe sitting in a cute little basket. Like life’s just giving you a quirky unexpected opportunity.

But sometimes? Life doesn’t hand you lemons, or give you a bat to gently bat them when they’re pitched your way.

It hurls them.

Fast. Hard. Repeatedly.

And instead of ingredients, they feel more like projectiles.

You’re not inspired. You’re bruised. You didn’t ask for this. And you don’t want them.

Lemonade pressure

Especially in the context of chronic illness, there’s often an unspoken expectation:

  • That once you get through the shock of diagnosis, you’ll spin it into something meaningful.
  • That you’ll have a story of triumph.
  • That you’ll make… lemonade.

The raccoon is at home plate wearing protective gear like a catcher, watching as a lemon is hurled from the pitching machine. And sometimes people do. That’s valid. Sometimes I’ve done that.

But other times? You’re just trying to survive the experience.

And that’s valid, too.

But. 

Not every moment of suffering has to become a productivity project or a beautiful narrative arc. There might eventually be a nice narrative arc, but it’s really hard when there’s not one, even if there will eventually be one.

Sometimes, things just hurt. And it’s not always possible to fix it or make it better (for yourself or anyone who follows). That makes it even harder, on top of an already hard situation.

So it’s important to remind yourself, no matter what you are going through:

You’re not obligated to make your suffering palatable to others. You don’t have to polish it up, find a silver lining, or fix an unfixable thing.

You can just exist and survive. That’s enough. It’s not a failure.

Sometimes, the most honest response to being pelted with lemons is to let them fall.

Let them sit there. Let them rot.

You’re not lazy. You’re not ungrateful. You’re human. (You’re a sail, not an anchor.)

What’s the alternative when you get pelted?

The raccoon is walking away, we see lemons on the ground but the raccoon isn't trying to catch or bat them. Forget the default script. There’s no “right” way to respond.

  • Maybe you’ll do something with those lemons later.
  • Maybe you never will.
  • Maybe someone else will pick them up.

You don’t have to choose right now, and even if you do choose, you don’t have to stick with that choice forever.

You don’t owe lemonade to anyone. Not to yourself, not to society, not to your past or future self.

Maybe you grieve. Maybe you rest. Maybe you rage. Maybe you do nothing.

And maybe, just maybe, that’s exactly what you’re supposed to do right now.

You are a sail and not an anchor

When you’re dealing with a challenging health situation, it can be hard. Hard because of what you are dealing with, and hard because you need to navigate getting and seeking care. That typically looks like going to a doctor, getting the doctor to understand the problem, and then finding solutions to deal with the problem.

Each of those has their own challenges. You may not have a doctor that specializes in the area you need. For example, you may not have a primary care doctor when you have strep throat, and have to go to urgent care instead. Or maybe you develop a problem with your lungs and need a pulmonologist, but that requires a referral from someone and several months’ wait to be seen.

Once you face that challenge and are in fact seen by the specializing provider (and hopefully the problem you have is in fact the one this specialist can address, rather than referring you on to a different kind of specialist), you have to figure out how to communicate and show what issues you have to the doctor. In some cases, it’s really obvious. You have a red, angry throat which leads to the doctor ordering a strep test. Or you go to the dermatologist for a skin check because you have a mole that is changing, and you get a skin check and a biopsy of the mole. Problem identified and confirmed.

It takes identifying and confirming the problem, and usually diagnosing it, to then reach the stage of addressing it, either with symptom management or with curing or fixing or eliminating the source.

But…what happens when you and your doctor can’t define the problem: there is no diagnosis?

That’s a challenging place to be. Not only because you have a problem and are suffering with it, but also, the path forward is uncertain. No diagnosis often means no treatment plan, or the treatment plan itself is uncertain or delayed.

No diagnosis means that even if your provider prescribes a treatment option, it may get denied by the insurance company because you don’t have the clinical diagnosis for which the treatment is approved for. Maybe your doctor is able to successfully appeal and get approval for off-label use, or maybe not.

And then, there’s no certainty that the treatment will work.

So. Much. Uncertainty. It’s hard.

It’s also made hard by the fact that it’s hard to tell people what’s going on. A broken leg, or strep throat, or a suspicious mole: these are things that are relatively easy to explain to other people what is going on, what it means, how it might be treated, and what a rough expectation of timeline for resolution is.

Most stories are like this. There’s a story arc, a narrative that has a beginning, middle, and an end.

With the uncertain health situations I’m describing, it’s often never clear if you’ve even reached “the middle”, or what the end will be…or if there even is an end. Certainly no guarantee of a happy ending, or an ending at all if you have been diagnosed with a chronic, lifelong disease.

I’ve been there (here) many times, now living with more than a handful of autoimmune diseases that I’ll have for life. But the first few were relatively “simple” to diagnose, treat, and understand what they looked like. For example, with type 1 diabetes, the symptoms of weight loss, excessive urination, incredible thirst, etc. led to a blood test confirming high glucose, an A1c test confirming it had been high for months, and a diagnosis of type 1 diabetes. The treatment is managing glucose levels with insulin therapy, presumably for the rest of my life. (22 years and counting, here). It makes things challenging, but it’s something I can explain to other people for the most part what it means and how it does or does not impact my life.

Lately, though, I’ve found more uncertainty. And that makes it hard, because if there is no diagnosis then there is no clear explanation. No certainty, for myself or to give my loved ones. Which makes it feel isolating and hard psychologically, in addition to the physical ramifications of the symptoms themselves.

There’s a saying in medicine: When you hear hoofbeats, think horses, not zebras.” It’s a reminder for clinicians to consider common explanations first, rather than go straight to explanations of rare conditions. Most of the time, the advice is helpful—common issues should be ruled out before rarer ones.

In my case, that’s what we did. We ruled out every possible common condition…and then pretty much all the rare ones. So what do you do, when your symptoms don’t match the pattern of a horse…or a zebra?

You might have an uncommon presentation of a common disease or a common presentation of a rare disease.

Either way, whether horse or zebra, the symptoms cast a shadow. They’re real.

Whether the animal in question has stripes or not, you’re still living with the impact. What makes this even harder is that many diagnostic processes rely on pattern recognition, yet undiagnosed conditions often defy easy patterns. If your symptoms overlap with multiple conditions—or present in a way that isn’t fully typical—then the search for answers can feel like trying to describe a shadow, not the thing itself.

And shadows are difficult to explain.

This makes a meta-challenge on top of the challenge of the situation, which is trying to explain the unexplainable. This is crucial not just for helping your doctors understand what is going on, so we can improve the diagnostic pursuit of answers or gauge the efficacy of hand-wavy treatment plans meant to do something, anything, to help… and it’s also crucial for explaining to your friends and family what is going on, and what they can do to help.

We often want to see or hear health stories in the format of:

  • Here’s the problem.
  • Here’s what I’m doing about it.
  • Here’s how I’m coping or improving.
  • Bonus: here’s how you can help

I’ve seen so many examples of friends and family responding to the call for help, for me and for others in health situations. I know the power of this, which is why when you can’t explain what’s going on, it makes it challenging to ask for help. Because it’s hard to explain the “what” and the “why”: you are only left with the “so what” of ‘here’s what the end result is and how I need help’.

(And if you’re like me, a further challenge is the situation being dynamic and constantly changing and progressing, so what help you might need is a constant evolution.)

You might also feel like you shouldn’t ask for help, because you can’t explain the what and the why. Or because it is ongoing and not clear, you may want to ‘reserve’ asking for help for later ‘when you really need it’, even if you truly do need help then and there at that point in time. As weeks, months, or even years drag on, it can be challenging to feel like you are burdening your loved ones and friends.

But you’re not.

The best meta explanation and response to my attempts to communicate the challenges of the meta-challenge of the unexplainable, the uncertainty, the unending saga of figuring out what was going on and how to solve it, came from Scott (my husband). We’ve been married for 10 years (in August), and he met me when I had two of my now many autoimmune diseases. He knew a bit of what he was getting in to, because our relationship evolved and progressed alongside our joint interests in problem solving and making the world better, first for me and then for anyone who wanted open source automated insulin delivery systems (aka, we built OpenAPS together and have spent over a decade together working on similar projects).

That being said, to me it has felt drastically different to be living with ‘understandable’ chronic autoimmune diseases like type 1 diabetes and celiac, and this latest saga where it’s unclear if it’s an extension of a known autoimmune disease (presenting and progressing atypically) or if it’s a new, rare autoimmune or other type of disease. So much is unknown. So many challenges. When we would adapt and address one problem or challenge, it evolved and needed another solution, or another problem cropped up. I’m honestly at this point exhausted of adaptations and problem solving. I’m tired of asking, seemingly endlessly, for help and support. Amazingly, Scott does not seem exhausted by it or tired of me, whereas many people would be. And he said something a few weeks ago, completely off the cuff and unplanned that really resonated with me. I was talking, again (he’d heard this many times), about how hard this all has been and is, and that I was also aware of the effect it has on him and on our relationship. I can’t do all the things I did before, or in the way I did before, so it’s changed some of what we do, where we go, and how we are living our lives. I’m having a hard time with that, and it would be natural for him to have similar feelings. (And frustrations, because if I feel frustrated with being out of control and unable to change the situation and fix it, so too would he be except worse secondhand because it’s so hard to love someone and not be able to help them!)

But what he said literally stopped me in my tracks after he said it, because we were out walking and I had to physically stop after he said it to process it in my heart (and leak some tears from my eyes).

It was something along the lines of:

“You’re not an anchor, you’re a sail.”

Meaning, to him, I’m not holding him back from living his life (as I was and am concerned about).

He continued by saying:

“Yes, the sail is a little cattywampus sometimes, but you’re still a sail that catches wind and takes us places. It’s much more interesting to let you sail us, even in a different direction, than to be without a sail.”

(Yes, you can pause and tear up, I do again just thinking about how meaningful that was.)

What a hit, in the most wonderful way, to my heart, to hear that he doesn’t see me and all these challenges as an anchor. He recognizes them, and that we are dealing with them, but he’s willing and wanting us to sail in the direction they take us, even when that makes us go in some unplanned directions.

Probably some of this is personality differences: I love to plan. I love spreadsheets. I love setting big goals and making spreadsheets of processes and how I’ll achieve them. In the current situation, I can’t make (many) plans, there are no spreadsheets or processes or certainty or clear paths forward. We’re in an ocean of uncertainty, with infinite paths ahead, and even if I set sail in a certain direction…I’m a cattywampus sail that may result in a slightly different direction.

But.

Knowing I’m a cattywampus sail, and not an anchor, has made all the difference.

If you’re reading this and dealing with an uncertain health situation (undiagnosed, or diagnosed but untreated, or diagnosed but with no certainty of what the future looks like), you may feel like you’re a boat adrift in the middle of an ocean. No land in sight. No idea which way the wind will blow you.

But.

You’re a boat with a sail. Maybe a cattywampus one, and maybe you’re going to sail differently than everyone else, but you probably are going to still sail. Somewhere. And your family and friends love you and will be happy to go whichever direction the wind and the cattywampus sail take you.

If you’re reading this and you’re the friend or family of a loved one dealing with an uncertain situation, first, thank you. Because you clearly love and support them, even through the uncertainty. That means the world.

You may not know how to help or be able to help if they need help, but communicating your love and support for them alone can be incredibly meaningful and impactful. If you want, tell them they’re a sail and not an anchor. It may not resonate with them the way it resonated with me, but if you can, find a way to tell them they and their needs are not a burden, that life is more interesting with them, and that you love them.

You are a sail, not an anchor, a post about dealing with hard health situations by Dana M. Lewis from DIYPS.orgThis has become a long post, with no clear messages or resolutions, which in of itself is an example of these types of situations. Hard, uncertain, messy, no clear ending or answer or what next. But these types of situations happen a lot, more than you know.

If you’re going through this, just know you’re not alone, you’re loved and appreciated, and you’re a sail rather than an anchor, whether you’re a zebra or a horse or a zebra-colored horse or a horse-shaped zebra shadow.

PS – I’ll also share one specific thing, for loved ones and friends, as something that you can do if you find out about a situation like this.

If someone trusts you and communicates part or all of their situation, and they specifically tell you in confidence that they are not sharing it publicly or with anyone else or with X person or Y group of people…honor that trust and request not to communicate that information. They have a reason, if not multiple reasons, for asking. When dealing with uncertain health situations, we can control so little. What we can control, we often want to, such as choosing when and how and to whom to communicate about our challenges and situations.

If someone honors you by telling you what’s going on and asks you not to tell other people – honor that by not disabusing the trust in your relationship. Yes, it can be hard to keep it to yourself, but it’s likely about 1% hard of what they are dealing with. Passing on the word becomes a game of telephone that garbles what is going on, often turns out to be passed on incorrectly, and causes challenges down the line…not in the least because it can harm your relationship with them if they perceive you have violated their trust by explicitly passing on information you asked them not to. And that, on top of everything else, can make a challenging situation more so, and it may then later influence how they want to communicate with others, potentially shutting down other avenues of support for them. So please, respect the wishes of the person, even if it’s hard for you. You can always ask “can I share this with so and so”, but respect if the answer is no, even if you would do something different in your situation. Because, after all, it is not your situation. You’ve been invited on the boat, but you are not the sail.

What it’s like to get intravenous immunoglobulin (IVIG) infusions for the first time

When I first found out I was going to get IVIG (intravenous immunoglobulin), I was nervous because I didn’t know what to expect. New medical treatments or therapies and the uncertainty of what to expect can make it harder. This is a little bit about my experience, what to expect with IVIG, and some differences in the experience depending on location (outpatient or not).

Preparing for the first infusion – prior authorization and scheduling

First, know that IVIG usually needs prior authorization from your insurance. This is approval not only for the treatment itself; but the volume (how much you’ll get); the schedule (do you do it a single day or multiple days in a row) and the cadence (how often do you get it, if you get it over and over again). And, the location.

The first time my provider prescribed IVIG, my insurance denied it. And again. And again. My provider had to do a round of peer to peer with the insurance company before they approved it.

(Note: IVIG is used for dozens of conditions including numerous autoimmune disease conditions. Sometimes this is the only approved treatment for these conditions; sometimes there are other treatments your insurance company will want you to try before IVIG. IVIG is rather expensive, more on that below, which plays into this.)

I was approved for a handful of infusions at an outpatient location in downtown Seattle. Once that was approved, I was able to actually schedule my appointments. If you get IVIG in multiple sessions (e.g. 2 days in a row, like I do, or 3 days in a row), it may make scheduling a tiny bit harder, but usually the clinics can get you in. Luckily, you don’t have to do the exact same time every session, e.g. you can start at 9am on Tuesday and then do 11am on Wednesday, if that’s what works for your schedule or theirs. Or if you prefer and they have availability, you can do it at the same time each day.

For your first appointments though, they’ll probably schedule you earlier in the morning and tell you to expect it to take all or most of the day. My first appointments were scheduled as 6 hour (!) blocks on back to back days. Gulp.

The first infusion experience

When I arrived for my first infusion, they did the usual check in at a front desk (like a typical doctor’s appointment) and then assigned me to a room/bay. This outpatient infusion center has open room bays with curtains to the hallway (and walls in between the bays), with numbers. Across the hall are several bathrooms. Once I got into my room, a nurse came in and introduced herself and walked me through what we would be doing. She started by asking if I had taken any pre-meds (pre medication) such as Tylenol or Benadryl. I said no (I didn’t know that I was supposed to), so she brought me two Tylenol and a Benadryl. This apparently is fairly common, because headaches are a common side effect and in rare cases (something like <1%) of the time allergic reactions can happen, so the Tylenol and Benadryl can slow down or minimize any allergic reaction that might occur.

I’ll admit, I was nervous about IVIG because of what I had read about allergic reactions, but I’ll say up front: I did not have any allergic reactions to IVIG at the first or any subsequent sessions.

While we were waiting for those to kick in, they put in the order for the IG itself, which had to be sent over from the pharmacy. They inserted the IV into my arm, which involves using a needle then immediately pulling it back out so only a small thing of tubing is left behind. (This is similar to an insulin pump site!) They tape it and wrap it so it won’t get jostled from normal movements, and we waited until the IG arrived.

Note: if you need to have labs run to check anything before or around the time of your infusion, they can pull blood from the same IV first, then they flush it with saline and can then use it to infuse your IG.

When they start the IVIG, they start it at really low (slow) rates. Your provider will have prescribed the rates and the schedule. For example, you start at a slow rate and then it increases every 30 minutes. This way, if you do have any symptoms (sudden headaches or start feeling itchy, for example), you can go back to a slower rate to finish the infusion. That will take longer, overall, than if you went at the planned schedule because as your rate gets higher (larger), more goes in faster.

An example schedule might be 0-30 minutes at 30 mL/hr; 30-60 minutes at 60 mL/hr; 60-90 minutes at 120 mL/hr; 90-120 minutes at 240 mL/hr; 120-150 minutes at 375 mL/hr. If you still have IG left to infuse after 2.5 hours (aka 150 minutes), they continue at the highest rate, eg 150-180 minutes will continue at 375 mL/hr. Note that with this typical progression, your rate starts slow and doubles every half hour, until you get to the max dose. I believe this is calculated based on body weight. I am not sure if this is the number they were referring to (for max rate determination), but I heard the nurses discussing that one of the numbers is calculated based on ideal body weight, not actual body weight. That is one of the factors that will influence how much you get (volume wise, as in how much liquid) as well as the rate schedule.

If you start to feel yucky for any reason, you have a button you can call the nursing team with. But they also have scheduled checks. My experience was that they took blood pressure, pulse, and temperature at the start (0 minutes) and every 15 minutes up to the first hour, then every half hour after that. So with the rates described above, the schedule might look like this table:

Time Rate  Checks
Start (0 min) 30 mL/hr BP, pulse, temp
15 min (no change, continues) BP, pulse, temp
30 min 60 mL/hr BP, pulse, temp
45 min (no change, continues) BP, pulse, temp
60 min 120 mL/hr BP, pulse, temp
90 min 240 mL/hr BP, pulse, temp
120 min 375 mL/hr BP, pulse, temp
150 min (no change, continues) BP, pulse, temp
180 min (no change, continues) BP, pulse, temp
(runs until you infuse all liquid)

In the scenario where you had no side effects, and let’s say you had 400mL of IG to infuse, that means you would finish the initial infusion in around 2 hours and 15 minutes. After the main infusion finishes, they will hang a small bag (often 50mL) of saline, and then infuse that at the same highest rate of your IG, which means that all the remaining IG in the tube will get infused in. This may take something like 10-30 minutes, depending on your rate.

Remember, though, for your first infusion you may be on slower rates than this progression, to watch for side effects. A typical first infusion might be roughly double the time as this (4+ hours) even if you don’t have side effects, as you progress through the rates. If you do have side effects (feeling yucky, headache, itching, etc), it may take a lot longer because they will go back to the slower rate where you didn’t have side effects. For example, if you had issues at 240 mL/hr but not 120, they will finish infusing at 120 mL/hr, which would take an estimated 4 hours and 45 minutes, rather than 2.5 hours.

Another thing that can slow down the total time is bubbles. If your infusion line develops bubbles, the infusion machine will detect them and sound an alarm and stop the infusion. A nurse will come in, clear the alarm, shake the bubbles back up the tube, and proceed. That might take 2-3 minutes total, but if that happens several times (which is common with IVIG), that may add another 15 or so minutes.

Once that’s complete, you will get the IV removed (which is like pulling a bandaid off, in terms of the experience) and you’re ready to go for the day!

With the slow first infusion rates, bubbles, and saline flush at the end, this is why they schedule you for 6 hours or so, even if the infusion itself may take 4.5 or so hours.

See below though, because the next round of infusions are usually quicker than the original rounds, if you don’t experience side effects during the infusions.

Creature comforts – what to take to an IVIG session for your infusion

Most infusion centers have semi-comfortable recliner chairs. You can put the foot of the chair up; you can lay the chair back. Some of them have a seat heater, although admittedly it doesn’t get super warm. You may want to dress in layers so that if you get cold, you can add items. For example, if it’s summer and you typically wear shorts and a t-shirt, you may want to take loose pants you could pull over your shorts or a jacket to throw over your torso, or socks if you aren’t wearing them. The nursing staff will offer you heated blankets, too.

That being said, my experience with IVIG was freezing. Not from the ambient room temperature, but because the liquid arrives very cold from the fridge, and infusing cold liquid into your arm at the higher rates caused my arm to be ice cold and uncomfortable. I tried warm blankets, throwing a jacket over my torso, wrapping a towel around my arm… and I still had a cold arm and cold hand that took over an hour to warm up after my infusion ended. What finally ended up working best for me was to bring my own heating pad, and place it on a low temp and sit against it. This warmed up my core temperature which then helped keep my extremities (arms) warmer. Now, I regularly use my heating pad every time and don’t need a jacket, long sleeves, a blanket, or anything else! It’s surprising how effective it was to warm my core in order to combat the cold in my arm. Another option is an infusion hoodie, like this one that my sister in law got me. It has zippers in both arms, so you can wear it with your IV tubing.

You’ll absolutely be able to get up and go to the bathroom! At this infusion center, the infusion machine is on a pole with wheels. It’s plugged into the wall with a power cord, but they’ll unplug it for you or show you how to do it, so you can get up anytime and roll yourself to the bathroom, then come back. The battery on the machine lasts 6-8 hours, so you don’t have to bother plugging it back in, and this makes it easy to get up and go to the bathroom whenever you need to, especially if you’re doing a good job staying hydrated (e.g., drinking lots!).

Especially at those longer first infusions, you’re there a long time (4 or 6 hours or more). At my first infusion, they offered me a breakfast menu (because we were there at 8am) and a lunch menu to order food from. At shorter infusions you won’t get a menu if you’re not there at meal time (and at other locations, see below, there are no meals but just snacks), but they still offer to bring you juice, water, snacks periodically.

I have celiac disease which means I’m gluten free and that cuts down on my ability to take whatever from the menu or snacks. (I’m also choosing to mask to avoid infection exposure, and know that masking works, so I’d rather not eat if I don’t have to, and so I don’t). They probably do have some GF options, but I don’t bother with them and bring my own snacks if I want them, and my own drink bags. I have a soft insulated bag I throw water bottles and diet sodas into with an ice pack, so they stay cold and I can have a drink any time I want to, of my preferred choice.

You don’t have to bring your own stuff, but if it would make you happier or more comfortable, you can!

The first few sessions, I brought my laptop, (and phone), headphones, and a tripod for my phone. I tried to get some work done on my laptop, but because the infusion was in the crook of my arm, I risked kinking and stopping the infusion. I eventually gave up on that (but it might be more feasible if it was infusing into my forearm, for example), and stuck to using my phone. Sometimes I watch a show; sometimes I listen to a podcast or audiobook or music; sometimes I’m on zoom calls on my phone with video off, depending on my schedule. But plan to bring entertainment/something to occupy yourself with. If you want, you can nap – they’ll dim the lights, but they’ll likely be doing blood pressure etc checks every 30 minutes so don’t plan to get uninterrupted sleep for the most part.

Side effects from IVIG at first infusion and subsequent infusions

At my first round of infusions, I honestly felt like I was in “time out”. I felt awkward sitting in the chair, tied to the infusion machine. I wanted to be working or out walking and going about my day. I wanted to be normal! (Well, I wasn’t normal, which was why I was getting an infusion). I felt fine during and after my infusions, so I got home and went for my usual walk. It was really hot that day (90 F in July in Seattle), so I felt pretty gross and overdone, and probably overdid it. Then I came home and tried to get some work done, but felt like garbage – I thought because of walking in the heat.

The second day, I did the same thing, but decided not to walk in the heat. I still wanted to try to get work done, and did some, but still felt generally kind of gross and tired and just not great. I had a little bit of a headache, so I kept taking Tylenol (in addition to the dose they gave me before my infusion).

The third day (so the day after my second infusion), I still had pretty strong headaches and felt a little gross. Not sick – I wasn’t infected, all my biomarker data from my wearables was fine (e.g. heart rate, HRV, temperature, respiratory rate etc), but I felt worn down.

Fourth day? Same.

Fifth day? Same.

It probably took those ~3 days after the two days of infusions of feeling gross, then I started to feel better.

Then I started to feel GREAT. I had more energy than I had had in months! It felt like I went from Eeyore to Tigger. Wahoo! So much energy (and no more headaches). I was thrilled.

(Spoiler alert: this is probably unique to my situation, but this also did not last).

For me, the first week I felt sluggish and had headaches. The second week I felt better. The third and fourth week I continued to have symptom progression like before I was on IVIG. That’s probably unique to my situation – from what my doctor says, this is not a common response to IVIG to have an improvement and then a decrease like I do, in a cyclical fashion. But this pattern has continued in all subsequent months, where week two I see an improvement and then drop back down to the previous progression in weeks three and four.

What I did change in subsequent infusions – my personal approach

The headaches I got from IVIG weren’t quite debilitating, but they were obnoxious and cut down on my ability to work or rest like I wanted to.

Over time, I gradually figured out that for me, working on IVIG days (during, or even only after infusions) tends to cause more headaches for several days after. Sometimes I need to work (well, I choose to work) on those days, but I’ve gradually shifted my schedule so that I’ll do audio-only calls that are listen only while I’m infusing, or after I’m home, but I don’t plan any intensive cognitive work on IVIG days. I also don’t try to go out and do anything anymore because that typically results in several days of minor but annoying headaches, even with Tylenol. I can certainly do those things, but it comes with a cost.

In other words, I went from trying to live my normal life on IVIG days (and feeling like I was in time out) to changing my approach and treating them like rest days (minimal to no work planned; no requirement for physical activity but to do a short, gentle walk only if I feel really great) and also often the day after. That is frustrating when I think about how much time I am losing (3 days every month!), but when I calculated the lost productivity in the next few days after IVIG, I realized I was losing out on even more time by trying to work through it, and so resting up on IVIG days and maybe the day after ultimately retains more productive and energetic time for me in that first week.

I continue to take Tylenol and a Benadryl prior to each infusion, although I have never experienced any allergic reaction symptoms (eg itching, rash, etc), but the cost of a Benadryl is low and it provides peace of mind. The Tylenol before I start does seem to help, and I find that putting reminders on my calendar for Tylenol in the afternoon and evening before bed on IVIG days both helps me more proactively remember to take them, and taking them proactively makes the headaches minimal or non existent, compared to if I wait for a headache to start and then am chasing the headache with the Tylenol. Not sure how common that is for everyone else, but in my experience after several months of testing, this is true for me that Tylenol proactively for 2-3 days can eliminate the headaches, in addition to reducing the cognitive load.

Note that you can also adjust your infusion rates, especially if you get headaches DURING infusion. My headaches are never during the infusion, nor bad enough that I want to adjust my rates to be slower – they instead seem to correlate with cognitive burden after infusions and activity burden on my body, so I choose to address them with less work, more rest, and Tylenol for a few days.

The financial cost of IVIG

My eyes about popped out of their sockets when I looked at my EOB (insurance document that says how much was charged and how much insurance paid) for my IVIG experiences. It was in the ballpark of $30,000 billed PER DAY, so $60,000 or so total for two days of IVIG.

Oh my gosh.

(Luckily, I have health insurance; and in fact I typically hit my out of pocket max and deductible within a few days of the new years, so I was not paying for this directly).

As those of you who have looked at EOB know, that’s not what actually gets paid, but still. Yeeesh.

The insurance company rate was more like $17,000 per day, or $34,000 for the two days. Still yikes, that’s a LOT of money. And to do this every month?!

That’s probably part of the reason why insurance pushes back on requests to cover treatments like IVIG. It. Is. Expensive.

But in some cases like mine, they are literally the only option and often the only FDA-approved treatment option for certain conditions.

But, there are things you can do to lower costs, and your insurance will likely tell you this. For example, my prior authorization was originally for something like 41 days, enough for two rounds of treatment. After that, we would have to resubmit for prior auth. I read that approval letter though and noted that they would be more willing to approve outpatient, ambulatory infusion centers.

…which is what I went to the first time. It’s not at the hospital; it’s in a standalone building across from the hospital. But for some reason, they source from the inpatient hospital pharmacy (I think) and so while they bill outpatient costs for nursing staff and facility, the IG liquid itself gets charged at hospital prices. Sheesh. Thus, the $30,000 per day, the bulk of which is hospital priced IG (which is already expensive).

So I looked around and found another ambulatory infusion center that is equal distance from my house, but actually a shorter drive most of the time due to traffic patterns, plus I wouldn’t have to pay for parking. The downside is that they’re not tied into MyChart so I can’t see their records or the status of my prior authorizations like I could with the other ‘outpatient’ center. The upside is: they are cheaper.

How much cheaper?

They bill $35,000 per day of IVIG for the same volume, and my insurance therefore pays about $15,000 per day, or $30,000 total for two days every month.

$34,000 per month (hospital), or $30,000 per month (ambulatory center). Same amount of time. Same drug volume. Same concept…but cheaper.

There was no way to find out in advance how much IVIG would cost at each of these locations. I only know now, after having experienced at both locations, what the relative costs are. It’s the same treatment, the same drug/liquid (IG) with the same cost for the same volume…. Except it’s not. Outpatient doesn’t always mean ‘outpatient’, depending on what services they use such as where they are sourcing via the pharmacy.

Note: this won’t be what anyone else’s IVIG costs, of course. It’s based on the volume of IG I am getting (based on my weight and medical conditions), plus the insurance plan, plus where they source it from, etc. But I’m sharing my costs to give you a ballpark (expect thousands, if not tens of thousands as the “price” that you or insurance won’t pay, but is the upper cap on what to expect).

Other infusion experiences including a different outpatient infusion center clinic experience

My second series of IVIG, due to the cost, was at this other outpatient center. This is in an ambulatory infusion clinic that’s basically plopped inside an older medical office or business building. It’s less shiny and new, but works the same. There are rows of bays with infusion chairs (so you’re in your own ‘room’), the infusion still works the same, etc.

I ended up in this location because I was actually trying to get home infusions. If I was going to be doing this two days a month, I thought, I’d rather have a home health nurse come in and do it and save me the travel time. But it turns out they won’t do mine as home  infusions because I do two days in a row. Stupid policy, and they lied to me up front about it, which made me really mad, because I was stuck going to this outpatient location.

They’re pretty efficient. You are basically scheduled directly with a specific nurse each time and you know who it is. They text you a reminder and some questions the day before, and you walk in and say hi and immediately get seated. They set up your IV and ask some questions and off you go. It’s the same infusion time (eg 2.5 hours, in my case), plus the infusion set up time which is usually pretty quick (15-20 minutes) and the flush at the end (~15 minutes), plus any bubble time, which means about 3 hours at the clinic, plus my ~30-40 minute drive each way depending on traffic. Times two days in a row. So, not as bad as those first infusion appointments (6 hours estimated), but it’s still 4-5 hours round trip of time for two days in a row. The nursing staff is great, and like the other clinic you’ll get offered warmed blankets, snacks, and drinks. So in terms of experience, it’s not too different. The main functional difference is that your infusion machine is on a pole on the wall, so you can’t get up and go to the bathroom with your infusion set up. Instead, you have to ask (or time it so when they come in to do a rate change) for them to pause the infusion, unhook you, then you go to the bathroom and come back and get your infusion hooked up again and you’re back at it. (This adds another 5 min or so to the total time, so I usually try to time it so I am doing it when they’re coming to change for the saline flush, or make it until the end. Sometimes I make it, sometimes I don’t because I’m also trying to hydrate really well and drink a lot, because that helps reduce headaches, too.)

At the end of each appointment round, they also take on the hassle of calling the scheduler for me and getting my appointments scheduled. I generally stick to roughly the same times of day and prefer earlier in the week appointments so that I can feel better by the weekend (again, perhaps my unique response timeline to IVIG).

I like this location a little bit less than the downtown location, but not $25,000 less, so I continue to use them every month for my IVIG.

Final tips – infusion rate spreadsheet to estimate time of IVIG

You’ll maybe have picked up that I don’t like uncertainty and not knowing what to expect. The vagaries of time uncertainty related to infusions bother me, because I like to know roughly how long things will take so I can schedule the rest of my day. After the first round of IVIG once we figured out what my rates are (and that I don’t have to slow them down for side effects), it should be predictable for how long things take every time, with margins for getting set up and flushed, etc. I ended up making a spreadsheet with my rates and time increments (every 30 minutes) and since I know my total volume of IG, I can see roughly what time my infusion will take. I also estimated the flush time of the 50 mL of saline (which is given at my max rate), and added that in. My spreadsheet therefore is set up so each time I change the start time and it auto-populates every 30 minutes how much will be given, how much has been given cumulatively, and including the estimated flush time at the end, what time the infusion will finish. This way I can estimate what time I’ll be leaving and when I’ll get home. For example, if I have a 10:30 appointment time, my infusion might start flowing at 10:48 (usually plus or minus 5 minutes from this, depending on if they unboxed all my stuff before I arrived). I might finish at an estimated 1:22pm, plus flush time, which means I can expect to be walking out the door at 1:35pm.

This way, if it takes a lot longer (say, start infusion at 10:57 and I’m having tons of bubbles), I know that I’m likely to be a half hour behind my typical schedule.

(If you make your own spreadsheet, it won’t be exact: it takes them a minute or two after the rate change alarm goes off to come and change it, so I actually add a minute to every 30 minute estimate to adjust for this time. I also add ~3 minutes buffer to the overall time to account for bubble pauses, too, as usually I average 2-3 rounds of bubbles that pause the infusion each time.)

Schedule may change (and IVIG may not be forever)

I had some existential angst when I realized that I needed IVIG. In part, due to the situation that caused the need for IVIG. But in part, for the idea that I would be on this monthly schedule for IVIG for the foreseeable future. Two days a month seemed like a LOT, especially with not knowing how long I needed it for. (At the point in time I’m writing this, it has been six months, and I’m still getting it for my situation.)

But if you need it, it’s usually worth it. (If not, you’ll stop it). So that my final piece of advice for folks:

  • If you need it, it’s worth the (time and usually financial) cost
  • It may not be forever. Your situation may improve to the point where you can space out your infusions more than your initial schedule. For example, you might first get it every 4 weeks, then do well enough to push it out to every 6 or 8 weeks, or more.
  • You might get to eventually discontinue it.

—-

That’s been my experience with IVIG so far, after 6 months of sessions where I get IVIG two days in a row every four weeks.

Update: I am adding this note with some additional experiences. I continued to have a ‘drop off’ in weeks 3-4 of my IVIG cycle, so I switched to trying 2 days every 3 weeks (instead of 4). It helped, but I still was dropping off in week 3. So then we switched me to 1 day every 2 weeks. That so far seems to be working better for me, but it’s only been a few rounds of 2 week cycles, and I still can’t tell if this is stopping my overall progression or flattening it or even helping turn things around. But it’s definitely a better quality of life experience to not have the dropoff effect in weeks 3 and 4, so I am sticking with one day every two weeks for now.

There’s not a lot out there about IVIG, and I’ll caution that my experiences may not be universal, but this may help others know what to expect when they’re going for IVIG for the first time, regardless of condition. You’ll note I did not specify what condition I have or the reason I’m getting IVIG, and hopefully that helps people understand this has been my n=1 personal experience.

Feel free to drop any questions below, or share your own experiences or any tricks you’ve come up with to improve your own IVIG experiences (like I do with my heating pad to fight the cold arm effect).

The Only Constant Is Change (And My Overactive Immune System)

The canary in the coal mine was my swollen eyelids. No one (including my providers) seemed to care over the last 3 or so years, but all along, I knew it was a matter of time before my body decided to speak up even more loudly and tell me what else was wrong and what was causing the swollen eyelids. And in January, it was time. My body decided to speak up, and it did so loudly.

I woke up one day in January with a sensation of wool wrapped around my lungs. I could breathe…but not normally. It felt like oxygen was not flowing effectively out of my lungs. My VO2max also dropped suddenly and unexpectedly (given my activity levels) by about a point. And sometimes when I would exercise, my SpO2 levels would drop well below where they were supposed to be, and take a while to come up. Some days were better, but some days I could not walk and talk on the phone at the same time without feeling like I needed to gasp for breath in between sentences (and much shorter sentences than I would normally say). My lungs, in other words, have problems.

I’ve spent the last ~3 months trying to figure out what’s wrong with my lungs, but we are still not to the point where we can define exactly what is wrong. Or, how to make them better. Yet, at least. (I’m pessimistic about “fixing them” but I’d sure like to stop them from getting ‘worse’). Right now, they’re not TOO bad. I did pulmonary function testing and some of my numbers are in ‘normal’ range (although they’ve dropped anywhere from 5-17% from baseline in 2015, when I had a bunch of above-normal results). Other numbers, however, are very below normal (<80% is not normal): some are in the 65-70% range. Bleh. Some are even lower. Collectively, they show TWO possible types of things going on, one of which is restrictive lung disease of some sort; the other is some possible small airways-related disease (which means albuterol might help that). No obstruction, which is good, in part because it crosses off one area of concern off the list, but I still have two other areas of concern. I also did a follow up high-resolution CT (aka HRCT) on my lungs which showed no obvious inflammation or fibrosis (scarring) which is both really good news – nothing terribly wrong yet to the naked eye – but also frustrating because clearly there is something wrong. My doctor and I are both concerned by the level of symptoms, and my doctor managing my autoimmune condition has suggested that the lung stuff, whatever it is, is now a separate disease/on a separate path than the rest of my autoimmune disease activity, and it should be managed by a pulmonologist.

So we are still waiting until my pulmonologist appointment to get more answers (every specialist referral means another 6 weeks to schedule the next new appointment, stringing out the problem solving process over time), and in the meantime I try to do what exercise I can do. Which is still exercising every day, but slowly and with lungs that hurt. Some days with lower blood oxygen availability; some days with OK oxygen (as measured by SpO2). Some days also hurt more to physically breathe, and on those days that often starts from the moment I wake up before I’ve even sat up in the bed. I have not been running a lot, which makes me sad. When I do run, it’s not joyful most of the time, although I try to appreciate the ability to run at all on those ‘bad’ days and savor the few moments of joy on the few better days. Not because of my legs, but because of my lungs. Sometimes just walking, even super slowly, also sucks.  But sometimes, I can still ski or hike like I used to, and other days I ski or hike like a snail pushing its way through a sea of peanut butter (very slowly and usually with a lot of vocal complaining about it, when I can afford to catch and waste my breath on words to complain). I’ve had to shift my focus from training with a schedule and a plan to trying to figure out a list of what I can do on a “good lung day” (which is <50% of the time). On “bad lung” days, I just focus on moving at all, however seems feasible that day.

Meanwhile, it’s not just my lungs. At the same time the lung stuff developed, I also developed pretty serious and sudden joint pain. It particularly affects the vertebrae in my spine, hips, and upper spine between my shoulders and neck. Did you know you have ‘joints’ where your ribs connect to cartilage and your cartilage connects to your sternum? I’m re-learning some of the many places we have joints that we usually don’t pay much attention to. Heat helps, so I spend a lot of time sitting against a heating pad, which thankfully means the biggest areas impacted by this issue can get regular heat therapy. But it also will sporadically “pang” with pain in other random joints such as in my hand, the middle of my foot, a toe joint, or my shoulder. Oral NSAID does nothing for the pain, but when the pain is in easy-to-reach spots, topical NSAID gel does help some, as does the application of heat to those areas. It can get pretty problematic, though, to the point where rolling over in bed at night wakes me up taking my breath away because I rolled over and the joint pain in my spine was so painful it woke me up. (And thus I don’t sleep well those nights, which also stinks.)

See https://xkcd.com/1907/ for source image and alt text, it's well known XKCD immune system comic highlighting the strength of our immune systems
This XKCD has always been one of my favorites and is feeling very relevant right now. See https://xkcd.com/1907/ for source of this image and alt text.

What the joint pain, like the eyelids cycling in and out of inflammation, is telling us is: the inflammation is spreading in other parts of my body and my body is attacking itself elsewhere, too. My eyelids continue to swell, but now there’s also a red patch particularly outside of my right eye that provides a visual cue to Scott when my inflammation is particularly at peak. But the joint pain and the lungs collectively mean my fifth autoimmune disease is angry and kicking in protest, lashing out at the rest of my body. And we need to do something about that, and so we are.

Treating autoimmune diseases is not without risk due to the treatment itself. There’s the short-term risk of side effects and the long-term risk of side-effects. When autoimmune disease gets as problematic as mine is (attacking my lungs; the escalating joint pain); it warrants risking the side effects of the medication, even though it’s scary. Also scary is the knowledge that we are trying to tweak my immune system. Even though I know my immune system is *too* strong and *overreacting*, it’s what I know, and it’s scary to think about trying to turn it down, because there is the risk that it overshoots and turns down too far in the process of trying to take it down just a notch.An image of two hedgehogs. On the left, a normal looking cute hedgehog with the caption "typical immune system". On the right, a hedgehog with wildly extended spines (like spikes) and lightning bolts shooting out of them, with the caption "my immune system".

Ultimately, the first-line treatment my doctor and I chose is a mild version of immunosuppression, which is an immunomodulator designed to modulate only part of the immune system. This is more mild than what most people think of when they think of immunosuppression (e.g. to go with organ transplant), and while they don’t know exactly how it works, it seems like it causes an effect of turning down *part* of the immune system, but not all. (In theory.) While it’s not been very well tested in studies in my autoimmune disease (this is the story line through allllll the medical literature about my condition), there’s a “cousin” autoimmune disease for which there are a lot of studies and data showing it helps some people, and particularly has a good chance of helping the joint pain. However, the risk of negative outcomes is also not zero. In the medicine we decided was best for me, there is a risk of it accumulating in my retina and causing vision loss. Yikes. The risk in the first 5 years is about 1%, meaning that in people who take this medication every day for 5 years, 1 in 100 will begin to have vision issues. At the 10 year mark, however, this goes up, and 10% (10 in 100 people) begin to have vision issues. And the problem is, this vision damage is not reversible. Plus, the medication has a half life of months, meaning it takes time to ramp up, but also that if you start to notice problems and need to stop the medication, there is another set of weeks to months before the medication levels actually begin reducing in your body, so you get additional damage possibly during that time. As one might imagine, I am very nervous about this risk profile, but this possibly helps illustrate exactly how bad the situation is that I am in: this joint pain is not ideal for quality of life and it is a serious symptom of a serious problem, which is a rampaging immune system that needs to be treated.

While I am not currently fully immunosuppressed, it does mean that I am choosing to continue to be careful to limit my risk in exposure to infectious diseases. For me, that means continuing what I’ve been doing since early on in the pandemic: I am already using a portfolio of risk mitigation strategies including seeking better ventilated air in indoor spaces (using CO2 monitor); masking in any indoor spaces outside home (unless I am at family’s house where everyone confirms no symptoms, tests negative, etc); using portable air purifiers and far-UVC lights when feasible; getting vaccinated and boosted against all the infectious diseases I can, etc. That feels right for me, although it’s not necessarily what others might choose to do in my situation. But again, my risk profile not only includes 5 autoimmune diseases, for which we are trying to turn my immune system *down*; I also have some kind of lung disease now, with lowered lung capacity that is directly influencing my daily living ability. So I am happy to do all the easy things that I can to further lower the risk of hurting my lungs more, such as by limiting exposure to acute respiratory infections that could lead to all kinds of further issues and complications that I just don’t need or want to deal with. So, the biggest change is mostly to what I will continue to ask of family members, which is reporting any and all symptoms of any type of illness, even if it’s “just” a cold, because a “cold” to someone else is likely going to be a lot more serious to me, given my immune and lung status. Plus, too, I may end up needing to switch to a different level of immunosuppression, which further changes the calculation of short- and long-term risk of acute illness exposure.

I started the medicine a few weeks ago, and I managed to avoid the worst of the short-term side effects that cause people to discontinue it. In weeks 2 & 3, it seemed like it was helping reduce the joint pain. I got excited, but then very un-excited when the joint pain manifested again (along with re-swollen eyelids and the spreading red patch outside of my eye). I was hoping this medication would permanently depress the inflammation and systemic attacks, but instead, so far, it looks like it might slightly dampen the inflammation cycles (and thus symptoms), and they haven’t yet completely gone away. And my lungs continue to be problematic, which matches my doctor’s prediction so far that they will not be impacted by this medication and I need some ideas from the pulmonologist to treat my lungs.

A wavy line over time showing the ups and downs of my joint pain cycles. Across the top are strips of color that show the periods of 'bad lungs' that sometimes overlap with the joint pain. It also shows a line where I started the meds and things got better (?!), but then crested back up. Then there's a bunch of question marks in the future indicating the uncertainty of not knowing what will happen and whether the symptoms will be managed by my treatment or not.

So here I am. 5 (or 6) autoimmune diseases; still acutely aware of the stigma that comes with living with (so) many chronic diseases; entering new territory of immunomodulation; and possibly in the future, maybe needing more immunosuppression. I don’t have a lot of answers or even a good understanding of what is going on with my body (for example, what exactly the problem(s) are in my lungs), which is frustrating. More acutely, some days just stink either due to bad lungs or due to joint pain. When I get really unlucky, I have a bad joint day on the same day as a bad lung day. The challenge with bad lung days is that it impacts my ability to exercise, whereas my joint pain doesn’t keep me from exercising (because it’s no worse during exercise and sometimes exercise distracts my brain from the pain signals). So during bad lung days, some of my “treatment” options for the bad joint pain are reduced. Bad lung days also make me feel really fatigued and short of breath even sitting down doing nothing, so I have some days where I’m doing normal workloads of things I want to do, and other days where I’m doing less than I would like. I have been slow to respond to emails related to non-time-sensitive-projects because basically, I’m over here just trying to breathe, and that’s hard. So: sorry to anyone who’s read this who has happened to email me – consider this an auto-responder about why I have not yet responded.

Stay tuned for more posts: I’ll be using this framework to talk about exercise strategies for exercising with ‘bad lungs’ and strategies that I’ve found to be effective (see this post as an example for strategies) so far on the days where I’m struggling to breathe and exist but also want to exercise so I don’t decondition my body so I can do the things I want to do on the “good days”.

If you’re a family member or friend who’s read this and wants to acknowledge what I’m going through but doesn’t know what to say – it’s ok. I don’t know what to say, either, which is in part why I haven’t said anything to most people! But it felt like it was time to start sharing some of what I’ve been going through. Feel free to send me a purple heart emoji (or a cat picture), no caption/text needed, and that’s an a-ok way to acknowledge that you’ve seen this. 💜

PS – one of my friends described my lungs as “sad balloons” and for some reason, that analogy felt really appropriate to how they physically feel inside my rib cage. Sad, and ineffective. I gave ChatGPT some prompts to illustrate “sad balloon” lungs and ended up with these, which feels cathartic to illustrate.

Two images side by side. On left, a comic-style drawing as if a young woman with a ponytail is in an xray (black and white drawing). You can see several balloons inside each of her lungs with frowny/sad faces. On the right is a grey and white drawing of a pair of lungs as individual clusters of balooons, some with sad faces.