Diary of a Sick Woman

Diary of a Sick Woman Navigating the medical industry and everyday life as a “medically complex” middle-aged mama.

Nuggets of wisdom, dipped in the zesty sauce of personal experience.

Oops! I did it again. Not sure what I did but I seem to do it a lot.
09/30/2026

Oops! I did it again. Not sure what I did but I seem to do it a lot.

09/30/2026

Things those with a chronic illness need you to understand ⤵️

💗 There is no moment where we feel completely okay

We wake up with symptoms, carry them throughout the entire day, and go to bed still dealing with them.

Feeling unwell has become our normal.

💗 Living with unpredictable health is exhausting

We never know how we will feel tomorrow or even a few hours from now.

It makes planning ahead incredibly difficult.

💗 A good day doesn’t mean we’re suddenly better

We might be out laughing, working, or doing something “normal” today and barely functioning tomorrow.

Chronic illness can change quickly.

💗 Sometimes we can do something, but there’s a cost afterward

What you don’t see is the exhaustion, increased symptoms, or recovery that can come later.

💗 We already feel guilty about things we can’t control

Canceling plans, needing help, resting more, or not being able to keep up can come with a lot of guilt.

We don’t need to be made to feel worse about it.

💗 Just because you can’t see our symptoms doesn’t mean they aren’t there

We can look completely fine while quietly dealing with symptoms you may never notice.

Got them ol’ crone bones… crackin like a glow stick. 😂
09/27/2026

Got them ol’ crone bones… crackin like a glow stick. 😂

My life sauce is definitely as cryptic as tea leaves. Because of my immune deficiency, some things show up very clearly ...
09/19/2026

My life sauce is definitely as cryptic as tea leaves.
Because of my immune deficiency, some things show up very clearly - like, the missing antibodies. There they are- gone.

GAD 65 antibodies are there. Thats pretty clear.
TPO and Tg antibodies show up. Another clear bingo.

Positive ANA? Bingo.

Any specific antibodies to be found? Nah.
ESR, CRP, sure. Anything helpful? Of course not.

Signs of damage. Clear corticosteroid response. But what’s doing it?
Let’s ask the ghosts in my blood! And….silence. Just little inflammatory tumbleweeds.

So now it’s time for fun stuff. Lumbar punctures and biopsies and lots of waiting.

I’m accepting the fact that we might not get any names. No bad guys to pin this on. Just best guesses and trial and error. More prednisone, more IVIG, and morphine.

I’m tired. To add insult to injury, I’ve got a cold. Or maybe a sinus infection. Or maybe it’s another fungal infection. I never know. Too early to tell.

It’s not a happy night here. Ugly cried all over my husband, begged God for my old life back, cried myself into a migraine. Going to bed.

I need to borrow some kind words if you’ve got any. I’m all out.

NOT MY PHOTO, NOT MY STORY - shared with permission. sharing because the person who left this note should be ashamed of ...
09/13/2026

NOT MY PHOTO, NOT MY STORY - shared with permission.
sharing because the person who left this note should be ashamed of themselves. And this is a reminder to think before you speak or act. You often don’t know what burdens other people are carrying. Tread lightly on the lives of others.

A neighbor left this on a couple’s car at their apartment complex. The note accuses them of “posing as a disabled person” and being “lazy” for parking in a handicapped spot.

The husband has permanent damage from brain cancer and the wife has Ehlers Danlos.

AND THEY HAVE A HANDICAPPED PARKING PLACARD IN PLAIN SIGHT.

Most disabilities aren’t plainly visible. Read it again if you need to. Folks who need a wheelchair to get around at all times are the easy ones to spot. The rest aren’t always easy. But that’s ok - you don’t need to be able to tell if someone is handicapped. It’s not part of your job. Relax.
Before you get your panties in a knot, check for a handicapped parking placard. See one? Cool. Leave that person alone. LEAVE THEM ALONE.

Don’t see one? Ask a property manager if it’s an issue they want to look into. Then go back to minding your own business. And the person who parked there? LEAVE THEM ALONE.

(There could be exceptions. It’s the last handicapped spot and you’re a person who needs one. Someone without a placard parks there and hops out of their car. “Hey do you need that spot? I’m handicapped and there’s no where else to park.” That would be acceptable.)

Chances are, if a host of weird symptoms are impacting your quality of life, ad you’re a person who previously enjoyed b...
09/12/2026

Chances are, if a host of weird symptoms are impacting your quality of life, ad you’re a person who previously enjoyed being healthy (a former health-enjoyer) you have likely already tried cutting out crappy food and giving your body more of the things it likes (sunshine, movement, water, nutrients - bodies love nutrients, dude.)

My advice? Start out with the adjustments you’ve already made and point out that something is still wrong.

“When I started feeling poorly, I made a point of improving my diet, sleep schedule, water intake, and exercise.” - if that helped a bit, say so. “While I did notice an improvement, my baseline is still not what it was before. Something has changed. I’m experiencing…..” *insert list of pertinent symptoms for the kind of doctor you’re seeing*

This isn’t about ignoring the fact that good food and appropriate body movement are helpful. Embrace that. They’re part of loving the sick body you’ve got. But shine a light of attention on the fact that the problem exists inspite of that. That’s what the doctors need to see. That the basics are covered. It’s the “did you try turning it off and then back on?” of medicine.

And if you’re not doing those things? Girl. Come on. Love yourself enough to do the basics. If you’d do it for the family pet, do it for yourself. Have some high quality protein and go for walkies. Or drink a smoothie and wiggle your peets. Whatever you can do.

It’s not a cure. It’s the bare minimum.
Take care of your little sick self.
Or your big sick self. Whatever. Just do it.

Thinking we need a change of name here. “Kate’s CVID journey” isn’t really gonna cover it - because that’s not the whole...
09/12/2026

Thinking we need a change of name here.
“Kate’s CVID journey” isn’t really gonna cover it - because that’s not the whole picture.
The reality is that I have a genetic illness, a couple autoimmune diseases, an immune deficiency and a whole host of trickle down malfunctions, syndromes, and complications.

This isn’t just about CVID. This is about navigating life AND the medical system while being “medically complicated.”

Some of you are just starting out where I was twenty years ago. So this is for you, as a sick mama - this is for my sick girlies. The ones with mystery symptoms, the fatigue that won’t stop, the questions piling up, and a doctor that looks at you like maybe it’s all in your head.

My goal is to share what’s helped me in the hopes that you can take some of these nuggets of experience, dip them in the zesty sauce of your personal experience, and get some use out of them.

This is my growing collection of maladies.
Let’s find a new name for the page…

Address

Fort Wayne, IN

Website

Alerts

Be the first to know and let us send you an email when Diary of a Sick Woman posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share