I've tried to explain this to you before. More than once. And I could see it in your faces. You wanted to understand, but it wasn't clicking. That's not your fault. Honestly, it's hard to explain something that even doctors took years to figure out. So I sat down and wrote it all out. What it feels like, what the science actually says, and what I need from you. Not because I'm in crisis.
Ken has been by my side through every single bit of this. Every doctor's appointment, every bad day, every middle-of-the-night moment. And good days too. But I want you to understand what's going on with me. Really understand. Not the nodding-along kind. The kind where it finally makes sense.
I need to say this before anything else: this didn't just happen overnight.
There have been clues my whole life. Little things that never quite added up. Pain that came and went without a good reason. Exhaustion that seemed completely out of proportion to what I'd actually done. Sensitivities that everyone just chalked up to "that's just how she is." The thing is, looking back, my body was trying to tell me something for years. Decades, probably. It just kept getting pushed down. Held together. Managed. Contained.
Until it couldn't be anymore.
At some point, the pressure got to be too much and the whole thing just blew. Not metaphorically. Actually blew. Everything that had been sitting under the surface for all that time came up all at once. That's what you're seeing right now. That's what this is. This is not some random new thing that appeared out of nowhere. This is a lifetime of physical stuff that finally couldn't stay contained anymore, hitting me all at once. And I need you to hold onto that as you read the rest of this.
Before I throw any medical words at you, I want you to feel this first. Just for a minute.
Imagine waking up feeling like you ran a marathon in your sleep. Your legs are heavy. Your back aches. Your hands are stiff. And you haven't even opened your eyes yet.
Imagine someone you love giving you a hug — and your skin screaming like you have the worst sunburn of your life. You don't pull away because you don't want to hurt their feelings. But inside, you're bracing.
It's not just the hug. It's the shirt tag. The waistband. My own hair on the back of my neck. The sheets on a bad night. Some days my skin just forgets it's supposed to protect me and starts reporting everything as a threat. My nervous system misreads normal touch as pain. You can't get away from your own skin. There's no break from it.
Imagine you're in a normal conversation — and the next word, a word you know, a word you've said a thousand times — just vanishes. Gone. And in that silence, your stomach drops. Because your brain screams: Oh my God, am I getting Alzheimer's? When my own words start disappearing, that's exactly where my mind goes. Instantly.
Imagine planning dinner with people you love. You shower. You get dressed. You do your hair. You're ready. And then your body just says no. Like a switch flipped. And you lie there wondering if they think you're faking it.
Imagine sitting under fluorescent lights at the store and it feels like someone is drilling into your skull. Not annoying. Painful. Genuinely painful.
That's just a regular day for me. And honestly? Not even a bad one.
Fibromyalgia. That's the name of it. It's real, it's recognized by every major medical organization in the world, and it has a name for a reason. It's not a mystery illness. It's not something doctors made up when they couldn't figure out what else was wrong. It affects millions of people, and there is real science behind it.
The fire alarm analogy. Think about a fire alarm. In a healthy building, the alarm does its job — smoke means fire, the alarm goes off, everybody gets out. It responds to real danger and stays quiet when there's no danger.
Now imagine a building where the fire alarms have gone completely haywire. Someone lights a birthday candle and the entire fire department shows up — trucks, sirens, hoses, the whole thing. Someone makes toast and the building evacuates. Sometimes the alarms just go off on their own in the middle of the night for no reason at all. (I know Katie gets this one!)
That's my nervous system. The wiring that's supposed to tell my body "this is pain" and "this is not pain" got scrambled. The pain I feel is REAL. My brain isn't making it up or exaggerating. The alarm system is just broken, and it's firing when it shouldn't.
I know the fire alarm thing might not land for everyone — so here are more ways to picture what's happening. Maybe one of these will be the one that makes it click for you.
You know how a bad sunburn makes even a gentle touch make you flinch? Now imagine that sunburn never goes away. A friendly pat on the back. The seam of a shirt. A hug. All of it registers as pain.
You know that one car in every parking lot that goes off when a leaf lands on it? That's my nervous system. A breeze sets it off.
You fill up, you drive, and you expect the tank to last. My tank has a leak. I can rest all night and wake up with the needle already dropping — and some mornings it's already on empty before I even start.
Every piece of fabric feels like it's scraping your skin raw. That's allodynia. My nervous system misreads normal touch as pain. Some days, clothes hurt.
You remember the worst flu you ever had? The body aches, the bone-deep exhaustion, the brain that wouldn't work right? Imagine waking up with that every morning. But you're not sick. Nobody can see it. No fever, no sniffles. Just that same awful flu feeling, day after day.
My whole body can feel bruised — deep, sore, aching — but there's nothing to show for it. No marks. No swelling. No black and blue. Just pain with no visible address.
The house is 72 degrees but the thermostat reads 110, so the AC kicks on full blast for no reason. Everything in my body looks fine on paper, but my nervous system thinks there's an emergency and acts like it.
It's like a garden after a late frost. You know that heartbreak when you did everything right. Planted at the right time. Watered. Tended. Cared for it every day. And then a late frost rolls through overnight and wipes it all out. That's what a bad flare feels like for me. I did everything right. I paced myself. I rested. I took my meds. And my body hit me with a frost anyway. And I have to start over.
It's like watering the garden in a drought. You've got one bucket of water and a whole garden that needs it. You can't save everything. You have to choose — the tomatoes or the peppers? The flowers or the herbs? That's me every single morning, figuring out what gets my energy today and what just has to hang on until tomorrow. And sometimes, tomorrow doesn't have a full bucket either.
It's like a trailer with a short in the wiring. You know when you've got a trailer and the electrical is acting up? The brake lights work sometimes, the left blinker is fine but the right one's dead, and you can jiggle a connection and it works again, but then it cuts right back out again. The wires are all there. Nothing is missing. But the signals are getting scrambled and nothing's reliable. That's my nervous system.
It's like a junction box wired wrong somewhere inside it. When it's right, everything works — this switch controls this light, this circuit feeds this outlet, signals go exactly where they're supposed to. But when the routing inside that box is crossed up, everything goes haywire. You flip the kitchen light and the bathroom fan runs. All the wiring is present and accounted for. It's the routing that's off, and signals that should mean nothing are getting sent straight to pain.
It's like trying to change a tire with a stripped lug nut. You've got the wrench. You've got the strength. You know exactly what needs to happen. But that one lug nut is stripped and it will not budge, and it turns a 20-minute job into an all-day fight. That's what simple tasks feel like for me some days. I know how to do it. My body just won't cooperate.
I need to talk about this part separately because it scares me more than the pain sometimes.
Sometimes I lose a word. Sometimes I forget where I was going. Sometimes I'm in the middle of a sentence and it's just — gone. And I used to try to push past it, but I can't do that anymore. Now I just stop and say "I can't even remember that word" and move on. Or try to.
And yes, the very first place my brain goes is Alzheimer's. Every time. Because I didn't just hear about that disease. I lived with it. I was there for Grandma, taking care of her, watching her disappear piece by piece, until the day she died. So when my own words start vanishing, that fear isn't theoretical for me. It's a gut punch. Every time.
This is fibro fog. It's not dementia. It's not Alzheimer's. It's my nervous system being so overloaded that my brain can't process everything at once, and things like word retrieval and short-term memory get dropped. It's real, it's documented, and it happens to the majority of people with fibromyalgia.
My to-do list is about 500 items long, and just looking at it is exhausting. I try to prioritize, and half the time that process alone wipes me out before I do a single thing on it. I still have Depends sitting in the laundry room that I haven't gotten rid of yet. It's not hard. It's not heavy. I just forget. I truly forget. And then I remember, and then I forget again.
I'm trying to figure out new systems that actually work for my brain the way it is now, not the way it used to be. So honestly, if either of you has any ideas — I'm all ears.
This is one of the hardest parts. You can't see it.
Fibromyalgia doesn't show up anywhere. Not in blood work. Not on an x-ray. Not on an MRI. There is no genetic test for it yet. It is completely invisible to every standard test medicine currently uses. That's not me making excuses. That is the medical reality. It's a diagnosis of exclusion — meaning doctors diagnose it by ruling out everything else first, and what's left is this.
There's no cast. There's no crutch. There's no limp that comes and goes. I look like me. I sound like me. And some days I can show up to a family dinner and laugh and talk and be completely present, and you'd never know anything was wrong.
But here's what you don't see — the drive home. The next morning. The day after that. Showing up and being "on" costs me something. Sometimes it costs me a lot. I might spend two days recovering from one afternoon that looked totally normal to you.
And when I cancel plans — when I call and say I can't make it after I already said I would — I need you to know that it's not because I don't want to be there. I want to be there. I got dressed. I was ready. And then my body pulled the rug out from under me, and I had no say in it. The guilt I feel when that happens is real, and it's heavy.
Here's something I really need you to hear, because this is important and I think it might be where some of the confusion comes from.
There are good days. Days when the pain backs off just enough that I can actually move around without massive pain. And when those days show up? I grab them with both hands.
I clean the house — and I don't mean a light wipe-down — I mean I have Ken pulling furniture away from the walls so I can vacuum and sweep behind everything. I'm catching up on all the things that piled up while my body wouldn't let me do them.
I know what you're both thinking when you see me like that. I can see it on your faces. You're worried I'm going manic. I'm not. What you're seeing is what a good pain day looks like. It's not mania. It's relief. It's me being able to be me again for a few hours, and it feels so good I don't want to stop.
But the truth is — I'm always in some level of pain. Always. There is no "zero pain" day. A good day doesn't mean pain-free. A good day means the pain is manageable enough that I can push through it and actually live my life. "She looked great today" and "she was in pain today" can absolutely be the same day.
I hate it. It really sucks. But that's the reality, and I'd rather you know it than keep guessing.
I want to talk about this directly because I think it's been sitting in the room for a while and none of us have said it out loud.
I know that some of the things I do look like mania to you. I get it. You've watched me deal with bipolar for a long time, and you've learned to watch for the signs. That's love. I'm not mad at you for it. But I need you to see the difference, because there is one.
It's not my brain running away from me. It's me knowing this good window might slam shut in an hour, and I'm trying to get as much done as I can before the pain comes back. It's urgency, not mania.
That's not me unable to stop. That's fibromyalgia destroying my sleep cycle. I'm awake whether I want to be or not. Trust me — I would much rather be asleep.
That's because I feel good for once. The pain backed off. The fog lifted. The sheer relief of it just pours out of me. I'm excited because I feel like myself again. I know to someone watching for mania, that energy looks suspicious. But it's not mania. It's a good day.
That's not a mood swing. That's the exhaustion, the frustration, and the stress catching up to me all at once. Living in pain every day, not knowing how tomorrow is going to go — that builds up. And sometimes it spills over.
I know you're watching because you care. I know that. Just please, please watch with the full picture now — not just the old one.
When I can't move around — and there are a lot of those days — what do I have left? Music. Reading. The computer. And one of the things I've been studying is what you guys call AI. I'm learning how to use it as a tool. How it works, what it can do, where it falls apart, how to make it do what I need — all while keeping up with the insane fast pace AI is developing.
And yes, that's when I start talking fast. That's when I light up. But that's not mania. That's your daughter being excited about something. There is a difference.
You know how in early spring when it's still too cold to plant outside, you start your seeds indoors on the windowsill? The garden isn't dead. It's just growing where nobody outside can see it yet. That's what's happening when I'm lying down on the computer. My body can't go outside and dig. But I'm starting seeds.
You know how with the '"adults" you babysit — you had to learn who needs what. Who you can trust with a task, who's going to wander off, who needs to be told three times. You didn't figure that out by jumping in blind. You watched, you learned, you figured out the system. That's what I'm doing with AI. It just happens to look like I'm sitting on the computer all day.
I think you picture something in your head when you think about my daily life, and I want to make sure it matches what's real.
Ken is on the computer working. Then he's up doing dishes. Then he's picking up the house. And all the while he's checking on me. If it weren't for him, this place would become one giant pile of who knows what. Permanently. And we get behind sometimes. The dishes stack up, things slide. And I tell Ken, leave it — you need to handle this other thing first. Because he can't do everything, even though he tries.
I take my bipolar medication correctly. The right amount. Every single day. I have been, I am, and I will. That's not up for discussion. On top of that, we've been adding other medications — with my doctors — to try to address the fibromyalgia pain. I am under my doctor's care and supervision. They are monitoring me. I am not just taking random pills and hoping for the best.
I feel awful sometimes. Ken is working, cleaning, managing the house, managing my meds, taking care of me — and I'm lying there. Doing nothing. Not because I don't want to help. Because I can't. And the guilt of that is its own kind of pain. But we are doing our best. Both of us. Every single day, we are absolutely doing our best to figure this out together. And we're getting there.
I feel guilty.
Not about being sick. I know I didn't choose this. But the timing of it sits on me in a way I can't always shake. Ken and I finally got together. Finally. And then Grandma died, and finally there was some space. Just us. The time we had both been waiting for. No more putting things on hold. No more waiting.
And then this happened. I got sick. Really, truly, knock-me-flat sick.
I know it's not fair to either of us to think that way. I know he doesn't see it like that. I know. But guilt doesn't care about logic. It just sits there anyway, heavy and quiet, in the middle of all of it.
I wanted you to know that too. Because I want you to see what he carries. I see it every single day. And I love him more than I have words for.
I want to address something directly, because I know it comes up, and I'd rather just say it plainly.
You've hinted, more than once, about Ken getting a job. Working for someone. I understand why. I do. It makes sense on the surface. But I need you to understand what Ken is actually doing, and why it matters so much right now.
His background in physics, in science, in how systems work — it went quiet for a while. Life happened. But all of this, my getting sick, the research, the fight for treatment — it kicked that part of him into kraken mode. He is building something serious. A real scientific foundation — the kind that gives us a shot at reaching the top doctors in this country who actually specialize in fibromyalgia.
I have been rejected by four rheumatologists. Four. They don't want to treat fibromyalgia. And Oregon doesn't exactly have rheumatologists on every corner. OHSU — the one that's supposed to be the answer — said no. I keep getting bounced back to my primary, Angela. Who is wonderful. Who listens. Who I am grateful for every single day. And who has openly, honestly told us: "I have a book on fibromyalgia." That's it. That's the extent of what she has.
It means Ken and I have to do this ourselves. We research. We learn. We find supporting literature. We figure out how to present it to Angela so I can actually get the treatment I need — carefully, because you can't walk into a doctor's office and say "this is how you need to treat me" without them shutting down. We shouldn't have to do this. We're not doctors. But nobody around here is going to do it for us.
Ken could be doing other things right now — things that would bring money in faster, and we both know that. But we made a choice together, and that choice was that my health comes first. Him going and working for somebody else takes time away from the one thing that is the most important. That is not nothing. That is everything.
I just needed you to understand the whole picture — not just the part you can see.
No. Nobody did anything wrong. Not me. Not you. Not anyone.
Science is still figuring out exactly why some people develop fibromyalgia and others don't. What they know so far points to a combination of things — genetics, how the nervous system is wired, possibly past physical stress or illness that flipped a switch somewhere. At some point, my nervous system learned to stay on high alert — and now it doesn't know how to come back down. That's not a character flaw. It's not something I did to myself. It's biology.
This is not your fault. It's not my fault. It's not something anyone could have prevented.
There is no cure for fibromyalgia right now. But there are real treatments that help. Medications that take the edge off. Gentle movement that keeps my body from locking up. Learning how to pace my energy so I don't crash. Working on better sleep. Managing the things I can manage.
I'm working with my doctors. I'm doing my best. And most of those doctors have been genuinely wonderful. They've reassured me over and over: this is not all in your head. This is a real, physical, medical condition. And I need you to believe that too.
One more thing: I am completely okay with sharing any of my medical information with you. Any of it. But that's an in-person conversation — face to face, not in a letter. All you have to do is ask me.
One medical thing I do want to tell you: I was so amazed when I figured out that my reactions to antihistamines, SSRIs, and cyclobenzaprine are all connected. It's all caused by the same thing. My fibromyalgia.
A big one: When I say I'm hurting, trust me — even if I look okay. Especially if I look okay.
Be patient when plans change. I'm not flaking on you. I'm surviving.
Please don't ask me how I'm doing unless you really want the answer. Good or bad. Raw or ugly. I'm done sugarcoating it, and I don't want to watch your face fall when I give you an honest answer. If you ask, mean it.
I don't need every conversation to start with my illness. I'm still me. I'm still your kid. So when you see me or call me, try something like this instead:
- "What are you and Ken up to this weekend?"
- "Have you watched anything good lately?"
- "Did you see what so-and-so posted?"
- "I heard the funniest thing today — want to hear it?"
- "What are you reading right now?"
- "Tell me something good that happened this week."
Keep sending me those links and articles you find. Every single one. I look at all of them, and it means the world to me that you're researching this and trying to understand it from your side. Just know that I might not be able to try everything, and my doctors and I are working together on what's right for me. But please don't stop sending them.
I know you. You're going to come across ideas and suggestions and things you've heard about, and you're going to want to share them with me. Do it. Share as many as you want. That's love, and I know it. Just give me grace when I can't follow every single one. It doesn't mean I'm not listening. It means I'm managing a lot. But keep sharing. Please.
You don't need to fix me. Ken is with me every single day. He's there for every step of this. I'm not alone. I'm not asking you to rescue me. I just need you to get it.
I didn't write this to scare you. I didn't write it to make you sad. I wrote it because I am so tired of saying "I'm fine" when I'm not fine — and I'm tired of seeing that confused look on your faces when I try to explain this out loud and the words don't come out right, or don't come out at all.
Now you have it. In black and white. Read it twice if you need to, or three times, or four. Take a few days to let it settle. Come back and read it again if something didn't stick the first time.
Your kid