Keli lives with lupus. This section of the site is where she writes about that, and where we slowly build a shelf of what the research actually says — kept in two clearly separate places, on purpose.
“We” is small and worth naming up front: Keli writes the personal half, and her husband builds and publishes the site. Nobody here is a medical professional. When you see “we” further down, that is who it means.
If you have landed here looking for answers about your own health, please read the next few sections before anything else. They explain what this section can honestly offer you and what it cannot.
What this section is — and what it is not
It is one person writing honestly about her own life, alongside a small reference library that shows its sources and says how confident it is.
It is not medical advice, and it is not a place that will tell you what to do about your body. Nobody writing here is your doctor, and nothing on this site will ever claim to treat, prevent, or cure anything. We will never make that promise to you.
That may sound like a small offer. We think it is the only honest one we can make. What we can do is show you where anything here came from and how sure we are about it.
Two kinds of writing, kept apart on purpose
Everything in this section belongs to one of two layers, and we never blur them together. A personal story that reads like medical guidance is the exact thing that does damage on a health site, so the structure of the site itself is built to prevent it.
Experience — what happened to me
First person, Keli’s voice, no footnotes required. It is true because she lived it. It carries no obligation to be sourced, and it carries no suggestion that it will be true for you. One person’s experience is real, and it is still only one person’s experience.
Reference — what the research says
Written from published material, cited, and marked on the page with how solid the underlying evidence is. Personal experience never gets promoted into this layer just because it felt convincing.
The benefit to you is simple: at any point on any page, you can tell which one you are reading. You should never have to guess whether a sentence is a story or a finding.
How sure we are: the confidence tiers
Anything in the reference layer carries a visible tier. It is not decoration — it tells you how much weight the sentence can hold.
- A — clinician-confirmed. It means we took the claim to a clinician involved in Keli’s own care and they confirmed it. It does not mean this site has a medical reviewer, and it does not make the sentence advice for you.
- B — published by a medical body. It comes from a recognized medical organization, and we point you to it so you can read the original.
- C — patient-reported. Cited, and labeled plainly on the page as not evidence. It is what people say, offered as context, never as a finding.
- D — unverified. Tier D never publishes on this site. If we cannot stand behind it, it does not go up at all.
To be clear about where we are today: the first reference pages are published, and they are tier B — built from published guidance by medical bodies and government health agencies, with every source linked. No clinician has reviewed them. That limitation is stated on each page rather than buried here.
That last rung is the one that costs us something, and it is the one we care most about keeping. The things we would not stand behind are usually the easiest to write confidently — so our answer is not to write them better. It is to not write them.
This section is still being built
We would rather say that plainly than dress up an empty shelf. Several pages here are structure with the writing still to come. The reference pages in particular arrive only as the research behind them is done properly — read, sourced, tiered, and checked.
That is slower than filling the pages this week, and it is the whole point. On a health site, publishing fast and correcting later is not a tradeoff we are willing to make with somebody else’s decisions. If a page here is thin, it is thin because the work is not finished, not because we are hiding the good part behind a signup.
Medical disclaimer
Please read this before you act on anything here. This site is written by a person living with lupus and by the person who helps her publish it. It is not written by medical professionals, and it is not medical advice, diagnosis, or treatment.
Nothing on this site claims to treat, prevent, or cure lupus or anything else. Nothing here is a substitute for care from a qualified clinician who knows your history. Please do not start, stop, or change anything about your care because of something you read here — talk with your own doctor first. If you think you are having a medical emergency, contact your local emergency services immediately.
Where to go from here
Four main pages sit under this one, with the sourced reference pages listed below them. Some are further along than others — the descriptions say what each one is for, not that each one is finished.
Start Here
The orientation page — how this section is laid out, what each part is for, and what to read first if you have just arrived and do not know where to begin.
What the Research Says
The reference layer. As it gets written, it will hold sourced write-ups of common questions, each showing its confidence tier — descriptions of what has been published and reported, never a recommendation for you.
My Experience
The experience layer — Keli’s own account in her own words. Hers alone, offered as company rather than instruction, and never presented as something that will hold true for anyone else.
Community
A private space for people living with lupus, where you do not have to explain yourself first. It is not open yet — it opens after there is something here worth gathering around, and after the privacy policy is real.
The sourced pages, so far
These are the reference pages published to date. Every claim on them links to where it came from, and each says plainly what it does not cover.
- A positive ANA is not a lupus diagnosis — up to 15% of completely healthy people test positive. What the test does and does not tell you.
- Things people are told about lupus that are not true — around thirty common beliefs, each with its source and, where it helps, a better question to ask.
- The treatment landscape, as of today — what current guidelines aim at, and which medicines carry a U.S. lupus indication. A map, not a recommendation.
- When something feels wrong: who to call — short. Worth reading on a good day rather than a bad one.
- Daily life: what helps, and what it can honestly claim — movement, sun, food, supplements, fatigue and pacing. None of it treats inflammation, and the page says so at the top.
- Questions worth taking to your appointment — questions only, no answers. The two to ask every single time are at the bottom.
- How to read a lupus headline without being taken in — phases, press releases, and what “recruiting” actually means.
- A short history of lupus — why some of what people are still told is decades out of date.
- Where all of this comes from — every source behind these pages, what each can and cannot support, and what we deliberately do not rely on.
Still being written: a plain orientation to what lupus is and the different types. Held back until a clinician has read them: anything about doses, monitoring schedules, kidney treatment selection, medicines in pregnancy, and vaccine timing — the things a reader could act on alone. That gap is deliberate, and it is named on the pages themselves rather than hidden.
Elsewhere on this site
This is one of two front doors. The other half of the site is Keli’s blog — ordinary life, written for its own sake and not about lupus at all.