Hi Friends!
I’ve written before about my kidney disease and what Nephrotic Syndrome is (https://sunlitsanctuaryblog.com/2026/01/08/kidneys-101/) but fortunately have not had to deal with a relapse…until recently. The five-year remission streak has ended, my luck (or whatever you want to call it) has run out, and my kidneys have shit the bed yet again. This post is to give a little more insight as to what a relapse looks like (for me, at least), and how it affects my life. Fair warning – this is a longer one.
How Did It Start?
The first sign that I am relapsing is puffiness in the face – specifically in the cheeks and around the eyes. I noticed on Sunday the 19th that I looked and felt puffy, so the next thing I did was test my protein. I have at-home protein test strips that indicate how much protein, if any, is in my urine. In remission, protein strips should read trace or negative. When I tested mine, it was 3000+ (this pretty much solidified that this is a relapse). After I picked up my heart from it sinking out my ass, I messaged my doctor and made an appointment to get my labs done. Shortly after that, I spoke to my doctor and got confirmation that it is, indeed, a relapse.
What’s Happening Now?
As soon as I notice signs of a relapse, I have to make some adjustments to my routine.
I am on a strict low/no-sodium diet. No more than 1000mg per day. And if you are familiar with constantly reading nutrition facts and notice how much sodium is in literally EVERYTHING, you understand that that’s practically nothing. For the last week I’ve been living off of nothing but spinach, veggies, and eggs every day. A sodium restriction was not ordered by my doctor this time, but I’ve had to do it in the past (like, to the point where I have to log how much of every single thing I eat and drink for weeks), so I just started doing it on my own to keep it from getting to that point.
I’ve also been taking a lot of natural supplements, something I did not do in the past, with albumin being the most important one. Albumin is just protein, and it’s one of the things they give me in an IV when I am hospitalized. It helps prevent edema, which is the medical term for extreme swelling in the legs and ankles due to fluid retention. I also have a dandelion root tincture, which helps cleanse the body and is great for the kidneys, and a horsetail tincture, which is another type of herbal supplement that rids the body of excess fluid and prevents edema. Out of everything I’m doing in attempt to stay healthy, I think these supplements are the reason I have not had to go to the hospital because it’s one of the only things I’m doing now that I haven’t done in the past.
Aside from the slight facial puffiness and edema (which I’ve been able to prevent so far), there are not really other physical symptoms of a nephrotic syndrome relapse. I’m very tired, exhausted even, no matter how much sleep I get. I can’t do much physical exercise because too much movement can trigger the edema (the edema getting too out of control is usually what puts me in the hospital). My life for the past week has been going to work, coming home, laying down, repeat (with a few bowls of spinach and olive oil in between). The part people don’t see, the emotional toll, is where the real struggle is.
The Part People Don’t See
The physical aspects are all fine. I mean, they aren’t fine, they still suck, but the stress of it all is what’s the hardest to deal with. One of the things consuming my thoughts all day is the possibility of having to take prednisone. If you don’t know what that is, consider yourself lucky. Prednisone is a type of steroid, and usually what I have to take to help shock a relapse back into remission. It makes you gain weight like CRAZY, causes “moon face” (just typing the words “moon face” is making my palms start sweating), gives you extreme hunger and mood swings (and I mean EXTREME), and just completely diminishes every last bit of self-esteem you’ve got. I’ve had extremely horrible experiences with it in the past and am particularly anxious about it this time because I am 9 months away from my wedding, so this is the absolute worst time for my physical and mental health to be flushed down the toilet. I don’t even know for sure yet that I have to take it, but just my doctor mentioning the possibility was enough to make me cry for hours.
It’s also been very hard to stay motivated, particularly at work. Sitting at a desk, staring at a computer, trying to focus on getting any actual substantial work done when there are 100 more important thoughts all swirling around in my mind at the same time is TORTURE. Like, who cares if Susan wants to order or not, am I getting better or worse? Is my protein level becoming stable or is it still increasing? I’m so hungry, what am I going to eat that has no sodium? Spoiler alert: nothing! Are my legs swelling? Am I drinking too much water? Am I not drinking enough? Are the supplements working? Is it just masking the root of the problem and my kidneys are actually getting worse and I just don’t know it yet? Will I have to take steroids? What if it doesn’t get better this time? It really puts things in perspective – the biggest problems you could imagine suddenly become the most insignificant problems in the world when your literal organ function is on the line.
My home routine is being affected as well. My body is working so much overtime to try and keep things crankin’ that I am exhausted all the time. That feeling you get right before you get sick where you just feel pure exhaustion and your eyes hurt as if you’ve been staring at the tv for too long – it’s a similar type of feel. It feels like there are sand bags attached to my limbs and doing the most minute of tasks requires 100% of my energy. Especially after struggling through work all day, I can’t even muster up the energy to unload the dishwasher or switch the laundry. I fall behind on house chores, which stresses me OUT let me tell you. Then, falling behind on chores makes me even crankier than I already am, and it just spirals in a never-ending loop of stress and irritation.
Aside from struggling to maintain focus and motivation, it can feel very isolating. Nephrotic Syndrome is not a common disease and the strain I have is even less common. Everyone tries to help and wants to understand but in reality, they just don’t. Especially because there are not a lot of physical symptoms, so from the outside it looks like everything’s fine, but it’s actually an internal dumpster fire. When people ask “how are you feeling?” it’s a hard question to answer because physically I feel fine, but my kidneys are failing and I have zero mental capacity left to form a single coherent thought. What am I supposed to say? People don’t really understand all of that and if they do, they don’t wanna hear me bitch about it, so I just say I’m feeling fine. Not that I want more people to have it, but I wish it was a more common disease so more people could better understand it and it would feel less isolating.
All in all, it’s definitely much worse emotionally than it is physically (at least until the steroids come into play and make me gain 65 pounds). I am just in a constant state of stress and anxiety about what’s going to happen. I literally could not give less of a shit about work or chores, or anything else for that matter right now. If my brain was an iPhone, it would say that I’ve reached my storage limit and I need to upgrade for more space. The overanalyzing every little thing I feel, the feeling of isolation, the stress about how to stop it and what the next few weeks or months will look like for me if I can’t – it’s simply consuming me.
What’s Been Different This Time?
Before this, I relapsed in 2015, 2018, and 2021. All three of those relapses followed the same pattern almost exactly – usually by this point, I would have already been to the hospital and back. Unlike all of my past relapses, however, I have yet to be hospitalized. I think the main reason I have not yet had to go to the hospital is because I caught it early enough and I’ve learned, over the years, everything I need to do to minimize it getting worse.
There’s been less puffiness and edema: in the past, its taken just a couple days before my legs, ankles, and the rest of my body swell to the point of winding up in the hospital. This time, however, I have been able to curve the progression of the swelling and have actually even lost weight since I started taking the albumin supplement and limiting sodium intake. This is a huge deal and major indicator that this relapse may wind up healing quicker than in the past. I 100% believe that the albumin supplement is the reason I’ve not yet been hospitalized.
I’ve also taken a very large interest in natural/holistic ways to cure various illnesses in the last few years, and I have been really leaning into that this time around. I already mentioned the natural, herbal tinctures I have, but I’ve also been spending at least a few minutes every day outside in the grass barefoot. Yeah, yeah, call it as woo-woo, conspiracy, tinfoil hat, out-there as you want, but it’s called grounding and it’s good for you. I also have a kidney tuning fork. It’s this big, long, double pronged thick fork – you hold the handle and bang the stick on it so it vibrates and then you hold it to your kidneys and they soak up the positive vibration. I’m sure if you didn’t think I was crazy for grounding, you certainly do now. But hey, what have I got to lose? If it doesn’t work, so what? I waste 5 minutes? Big deal. Who knows, maybe it is working. After all, I’m not in the hospital yet, am I?
What Will The Coming Weeks Look Like?
Honestly, I have no idea what the next few weeks will look like. If things get worse, I’ve been there done that, so I at least know what to expect if that’s what happens. If things get better, then that’s great and it will be the first time I’ve relapsed without being admitted to the hospital. The problem is that I just don’t know which way it’s going to go, and that’s what sucks. Me doing all of the right things at home doesn’t guarantee that it can be corrected on its own. There have already been many aspects of this relapse that aren’t mimicking those of my past relapses, so I feel slightly hopeful that I’m a little more in control this time, but still very unsure of everything.
I’ll be doing labs again in a little over a week, and then I’ll connect with my doctor and we’ll go from there. That’s pretty much the deciding factor as to whether I need a hospital and those awful steroids or if it’s improving on its own. In the end, it’s all going to be fine. It always is. It’s just a lot. All I can really do now, at least until my next lab appointment, is keep doing what I’ve been doing and have a little faith that this time will be different!
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