Sometimes the hoof beats really are a zebra
- Living As A Zebra
Some days my body feels like a zebra
standing in tall grass—
striped with contradictions,
rare but real,
misunderstood by anyone
who only knows horses.
Pain flickers along the stripes,
a Morse code I never asked to learn,
telling me today will cost more
than I planned to spend.
My spoons scatter early—
dropped in the hallway,
left on the bathroom counter,
forgotten under the weight
of simply rising from bed.
People ask why I can’t just find more,
as if I were hiding them
in some secret drawer.
But a zebra can’t turn into a horse
by wishing.
And I can’t trade this body
for one that behaves
just because I have things to do.
Still, there is a quiet resilience
in those black-and-white lines,
a rhythm of survival
that pulses beneath the ache.
I gather the spoons I have,
cradling them like fragile silver truths,
and step forward—
not gracefully,
but honestly.
Even on the hardest days,
some part of me keeps moving,
striped and stubborn,
carrying a small glint of hope
in the curve of each spoon
I manage to hold.
- The Body Keeps It’s Own Weather
Some mornings it is a quiet ache,
a low cloud that never fully lifts.
Other days it is a storm
that hums beneath the skin,
vibrating through bone and breath
as if announcing itself
in every direction.
I move carefully now,
as though carrying something fragile
and strangely heavy—
a weight no one else can see
but I cannot put down.
There is a grief in this,
for the life I imagined living
without negotiation,
without needing to measure each step,
each hour,
each cost.
But there is also something like defiance—
a silver lining that isn’t bright
so much as persistent.
A small steady light
that returns
even after I’ve convinced myself
it is gone.
I am learning to build a life
inside this changing weather,
to name myself
not by what hurts
but by what continues:
the breath,
the reaching,
the rise after the fall,
the quiet choosing
to stay.
- Silver Linings
Some days the sky is a closed fist,
heavy with everything you didn’t choose.
But even then, a thin seam of light
waits at the edge—
not loud, not blazing,
just patient.
You learn to keep walking
even when the ground feels uncertain,
even when the map has blurred
and your hands are tired
from holding yourself together.
Silver linings aren’t promises
that everything will be easy.
They’re reminders—
quiet, stubborn—
that something inside you
still reaches toward light.
And maybe that’s enough for today:
not triumph,
not clarity,
just the decision
to stay,
to breathe,
to not give up
on the small brightness
that keeps returning
in its own time.
- The Advancing Research For Chronic Pain Act
As a US Pain advocate I am working on this project. This is an important bill that we are trying to get co-introduced into the 119th Congress. It will require the CDC to research, analyze and publish population health data on chronic pain. Please reach out to your senators and federal representatives asking them to help out. They count all letters from constituents of their states and take them into consideration when working on bills like this. Every single person counts! Feel free to google and learn more about the bill in your free time if interested. It will make such a difference big difference in the treatment and outcomes for people living with chronic pain!
- Hold The Line
There are days when the air feels heavy
and each step asks more of you
than you think you can give.
You move anyway.
Not because it is easy,
not because you feel brave,
but because something inside you
refuses to let the story end here.
Persistence is quiet.
It rarely looks heroic.
It is the small decision
to keep your hands on the wheel
even when the road vanishes in fog.
It is the breath you take
after the one that almost broke you.
It is the moment you choose
to stand again,
even if you stand shaking.
You keep going
because some part of you
still believes in the possibility
of a sunrise you haven’t seen yet.
And that belief—
fragile, flickering, stubborn—
is enough to carry you
to the next moment,
and the next,
and the one after that.
This is what it means
to never give up:
not perfection,
not certainty—
just the simple, undeniable act
of continuing.
- Been awhile…
I haven’t posted anything in awhile so I apologize. My pain and other symptoms have been especially bad the last few weeks and I just haven’t felt up to blogging. That being said there are some highlights despite it all!
I was able to get to my brother and fiancée’s baby shower despite having a particularly bad weekend. We brought the wheel chair and I was able to visit with loved ones I haven’t seen in a long time and got to be a part of a special day. The baby is due in just a few weeks and I am determined to visit as much as possible even if my illness doesn’t take a day off. I can’t wait to be an auntie!
I also finished taking a class to become an advocate for the US Pain foundation! I have to work on a project for a number of hours now and then I will have an official certificate. I’m focusing on educating people called the Advancing Research for Chronic Pain Act (ARCPA) which will lead to comprehensive research on chronic pain, something that is severely lacking. The more research we gather the better the treatment options and quality of life will be for those of us living with chronic pain, which is 1 in 4 people in the US. It’s a real problem and I’m grateful to be able to be a part of the solution.
As the holidays approach I hope my body hangs in there so I can visit back home and enjoy Xmas. I can’t wait to hold the baby when they come! Focusing on positive things and things that bring me purpose make a big difference during these hard stretches for sure!
- Hope With A Pulse
Hope isn’t a sunrise
or a miracle cure.
It’s quieter than that—
a small, steady thing
that refuses to leave.
It lives in the days
when your body feels heavy
but you rise anyway,
even if rising only means
lifting your eyes.
It hides in the slow work
of learning yourself again—
how to rest,
how to listen,
how to stay soft
in a world that keeps asking you
to be steel.
Hope is the breath you didn’t notice,
the one that stayed.
It’s the hand you hold out
to your future self,
saying,
Come with me.
We’ll figure this out together.
It’s not loud,
or perfect,
or constant.
But it returns—
sometimes in the shape of a friend,
sometimes in a quiet morning,
sometimes in the gentle truth
that you are still here.
And being here
is the first
and bravest
kind of hope.
- Mixed bag
The last week or so I’ve gone back to feeling a lot of dizziness and weakness and falling again. I knew it was only a matter of time until it happened again but I was hoping I’d have some more time before feeling like crap again. My brother and his fiancé had their baby shower last weekend and despite feeling odd I made sure I made the trip and was able to be there with everyone. It was so nice to see people because I haven’t felt up to making the Connecticut to Boston trip in over a year so I haven’t seen a lot of my loved ones. I’m so glad I pushed myself to go last weekend. It was such a great experience that I got to be a part of. It did make me extra emotional and wishing I could go back to a time in my life when I could do those things with ease. It’s amazing how much chronic pain and illness has altered my way of life.
I’ve been doing an online training to become an advocate for the US Pain foundation that has taught me a lot. It’s one zoom meeting a week and now I have to pick out a project advocating for chronic pain for a number of hours and then I am certified. I’m going to focus on having more multidisciplinary treatment options for chronic pain available and covered by insurance such as acupuncture, Craniosacral therapy and osteopathy. These are things that make a huge difference for me but that I have to pay for out of pocket and took some time to find good providers. If I didn’t have access to the alternative treatments I get each week I’d be in much worse shape than I already am. It’s also nice to be using my brain for something important and useful even if my body doesn’t cooperate. It reminds me of the ways my life is important and how I can still make a difference even if I am disabled!
- Not A Paper Doll
Don’t fold me into someone else’s story.
Don’t pin me to a backdrop
and call it belonging.
I am not a paper doll—
not cut from safe outlines,
not held together by glue and politeness.
I crease,
I bruise,
I breathe.
There are fingerprints in my clay,
heartbeat in my edges.
I have torn and taped myself
more times than I can count,
but each repair made me thicker,
less likely to blow away.
You can’t flatten me anymore.
I am three-dimensional—
messy, warm, real.
Once, I lived along the seams—
edges trimmed to fit
someone else’s idea of gentle.
Smiles drawn on,
arms that only bent one way,
kept upright by the kindness of scissors.
I learned to hold still,
to fold instead of speak.
To look whole, even when hollow.
But paper tears easily—
and one day I did.
Now I am not neat,
not smooth,
not safe for display.
Ink runs where the rain touched me,
and somehow
that’s where I started to feel alive.
No longer paper.
Still fragile,
but mine.
- Fault Line
It starts beneath the skin—
a tremor I can’t name,
small, electric,
like a wire humming too close to water.
My chest forgets its rhythm,
breath becomes a narrow hallway.
Every thought grows sharp edges,
rattling against my ribs.
My stomach tightens,
a fist around nothing.
Even my hands feel loud—
heartbeats echoing in the palms.
The world narrows to static,
to the sound of my own pulse
arguing with the air.
And still I smile,
steady on the surface—
a bridge holding
while the ground shakes beneath it.
- Storm Inside
The air thickens before the words do.
A pressure builds—unspoken, electric.
I feel the storm rise beneath my ribs,
clouds forming where calm should live.
Lightning thoughts,
restless wind of what-ifs.
Every heartbeat feels like thunder.
But storms can’t last forever.
They spend themselves
against the quiet.
And when the rain finally stops,
I find myself standing
in a softer kind of silence—
one that smells like renewal,
like the world has forgiven me
for feeling so much.
- An ok week
So for no reason I can find this last week my dizziness and falling disappeared. I didn’t do anything differently so I have no clue why I got a reprieve, but today I’m back to Tinnitus and wobbly legs and vision loss. I hate when I can’t determine why a symptom does or doesn’t happen. Every piece of information is helpful in allowing me to live some semblance of a life. I’m hoping today isn’t the start of another bad streak because I have things that are meaningful to me coming up that I refuse to miss even if I have to use the wheelchair and feel like hell. Fingers crossed!
- “Gravity’s Gentle Betrayal”
The room begins to tilt
as if the world has forgotten its balance,
as if gravity has loosened its grip
just slightly,
just enough to make me question
whether I am the one who’s moving
or if everything else has decided to sway.
The ceiling lowers and rises,
the floor hums beneath my feet,
and the edges of things blur
like watercolor left too long in the rain.
I blink,
but the horizon still bends.
I breathe,
but the air is too fluid to trust.
Dizziness is not just spinning—
it’s the slow betrayal of certainty,
the whisper that even standing still
can be dangerous.
Sometimes I hold onto walls
like old friends.
Sometimes I close my eyes
and pretend the darkness is steadier
than the light.
People see only the pause,
the hand on the chair,
the half-smile that hides
how much it takes to stay upright.
Inside, I am oceans—
currents twisting,
tides confused,
searching for shore.
And yet,
even in this motion,
even as the room leans sideways,
I am learning to find balance
not in the stillness,
but in the grace
of keeping on standing.
- Been awhile
I haven’t posted in quite some time because illness has taken a turn for the worse. I’ve started getting seizures and collapsing a lot and nobody can figure out what is going on. I’m seeing a cardiologist soon to see if it’s heart related but in the meantime I’ve been basically bed bound and really week and not able to do most of the things that I need to do and that I want to do. So I’m just really down in the dumps and frustrated
- Survivor’s Voice
She opens her mouth
and nothing comes out—
not even the whisper of air
that might betray her longing to speak.
Her throat holds the memory
of the moment it shut itself down,
locking words behind bone and silence.
People ask questions.
She smiles, or nods,
or lets her eyes wander away.
They think she is shy,
or stubborn.
But the truth is heavier—
her voice lives in a place
she cannot reach without trembling.
Sometimes, at night,
she feels the echo of it,
a sound pressed deep into her chest,
aching like a bird
beating its wings
against glass.
And she wonders
if one day
the cage will break,
if sound will spill
like light through a cracked door,
and her voice, fragile but alive,
will return to her.
- Running out of Spoons
- Seizures now too!?
So as if I didn’t already have enough symptoms and problems, lately I’ve been having these what I believe are seizures. I get tinnitus, start twitching really badly, and can’t hold my body up and I end up falling a lot. It’s been happening more and more and it’s really debilitating. I had an EEG done and I’ll get the results for this coming week, but I wasn’t having any symptoms while they did the test so I’m not sure if it will show anything. But I really hope my neurologist can figure out what’s going on because I’m not able to reliably commit to anything living like this. For example, I was so excited to go see a Broadway show tonight and I can’t go because I’ve had three episodes happen since this morning and I don’t want one to happen while I’m at the theater and cause a ruckus
Connective tissue disorders are just so evil because they impact every single part of our bodies from our skin to our organs and more. So I’m back to trying to find out a solution to this whole new twitching thing going on because it really scares me. I don’t wanna end up hitting my head or hit really injuring myself because I fall.
On the bright side, I got accepted into the advocacy training program for the chronic pain foundation! It’s 52 hour classes and then you pick a topic that has to do with Congress chronic pain and work on that for six weeks or so. I already know that I wanna focus on the way that a specific hospital in the area has been treating the private practice pain medicine clinic providers which is limiting the options for those who really need to see this one specific doctor. Unfortunately, he is leaving due to a lot of the bureaucracy and legality of the way things are working out. So they’ll be a period of time where I won’t have a chronic pain doctor which really sucks, but he’s working on setting up his own EDS and Pain Clinic when he has a chance and his plan is to eventually be able to get his old client based back. But learning more about how to be an advocate for Congress and an advocate for chronic pain will definitely help me be more of a forced to be reckoned with and determined to be heard when it comes to things like this.
- Living This Human Life
A real woman moves through morning with gravity and grace,
not a puppet on strings pulled by others’ hands or by the chorus of expectations.
Her choices are her own, made in the quiet rooms between impulse and consequence.She carries history in the lines of her hands:
the stories of work, care, and courage stitched into her daily life.
Her voice arrives with weight, measured in verbs rather than adjectives,
describing what she does, not how she looks when someone watches.Her body is a map of navigated storms and earned rest,
a ledger of endings and beginnings that she authored.
She learns to hold space for vulnerability and strength in equal measure,
to tend her own boundaries as patiently as she tends others’.There are days when the world bows to glitter and gloss,
and days when the world asks for steadiness, for grit, for repair.
She answers with persistence, with kinds of resilience that don’t pretend to be flawless.She refuses to be a prop, a performance, a quick reaction to someone else’s script.
She designs her own lines, edits her own scenes, chooses what to reveal and what to keep.
Her worth is not a function of compliance or charm, but of integrity in action.In every ordinary gesture—care given, risk taken, truth spoken with care—
she builds a quietly formidable canvas.
A real woman is a horizon she keeps widening, not a puppet she’s expected to dance for.And when she rests, she rests with permission, knowing she may rise again
still learning, still growing, still choosing the next step toward becoming more fully herself. - One Broken Wing
The bird does not wait
for the wing to mend.
She lifts herself anyway,
a crooked rhythm in the air,
one side beating strong,
the other trailing like a scar.
The sky does not ask her
to be perfect,
only present.
She circles unevenly,
but the horizon still welcomes her,
and the wind carries what she cannot.
Every flight is proof—
that broken does not mean grounded,
that fragments can still rise,
that survival is a kind of grace
all its own.
- The Good Days
On the good days
the air feels lighter,
as if gravity has loosened its grip.
I rise without bargaining,
my body not a cage but a doorway.
The hours open wide—
I make tea,
I laugh too loud,
I carry my own bags to the car.
Nothing miraculous,
yet everything miraculous.
I remember what it feels like
to belong to the rhythm of the world,
to move without counting spoons,
to trust my legs, my breath, my voice.
The good days are fragile,
but they glow like stained glass,
holding all the broken pieces together,
reminding me why I keep going—
why I keep hoping
for another one.
- Another great doctor appointment!
I can’t believe it, but I’ve had yet another good new patient appointment with the provider! My pain doctor referred me to see a rheumatologist to help finally get me on the medicine I need for my immunodeficiency and my osteoporosis and I met with her today and she was absolutely amazing! She’s very knowledgeable about Ehlers-Danlos Syndrome and other connective tissue diseases and is more than willing to go to the bat and fight for me when it comes to insurance. It is so exhausting when you hardly have any energy to begin with to spend so much of that energy managing your medical care, but that seems to be the case more often than not when you have a rare, chronic illness. so to have somebody that’s in my corner and by my side and willing to lift the burden it takes on me is a true gift. Once I finally got a few really great specialists it got easier to find others because they were referring me to each other.
I’m still trying with frustration to get a hold of my GI doc to have a legit conversation about getting me put onto TPN (total parenteral nutrition) so I can finally start gaining some weight and getting some better nutrition in my body. She’s booked out all the way into next year for appointments. I’ve been trying to at least be able to get a hold of her online. Her nurse did say she would let her know I needed to talk to her, but I’m still waiting for a response having my body be at this Severely low weight for as long as it has been is not safe and since the feeding to failed so miserably the only option at this point would be TPN and I think it would be a good option, even if only for a few months. So I’m really hoping that I hear back from her office soon either to talk to her or to talk to somebody else about getting the process started however, all in all it’s been a win for doctors appointments for this here zebra lately. 🦓
Zebra Seeking Spoons 