Inkwell: Authors and Artists

    
     In March I started chemo therapy where the chemo is injected
right into the bladder. The first one I had to stop the procedure
after 10 minutes.  I had insisted that the nurse could stop the
procedure when I asked without having to get the doctor's approval
which always takes a long Time.  It turns out that I am one of the
twenty percent of patients who have bladder spasms when a catheter
is clamped shut during treatment. 
    I met with the oncologist and explained about clamping and
cramps. He said he could give me pain medication.  I asked if I
could have the catheter removed during the two hour treatment.  He
said he would ask the infusion center director but he thought they
would not agree to a change in the protocal.I said I lived alone and
am a fall risk with these pain medications.
    The next morning he called me and excitedly told me that they
would change the protocol for me. So the next 5 treatments worked.
The nurse said they are now using this new protocol for bladder
spasm patients.
  

    
So that's the second time you have spoken up and changed the system
to benefit the patients who come after you. Congratulations
  

    
Amazing, Kathy! You are AMAZING!
  

    
That's great, Kathy! In Susannah's terms, I think you're a seeker
who became a solver!
  

    
Nancy, using FB isn't lazy. It's fishing where the fish are. But do
stay on guard about bots and outside/commercial entities coming into
private groups. That's real. See:

How a patient advocate discovered a massive security problem with
closed groups on Facebook, and became a white hat hacker.
https://lightcollective.org/2018/07/04/how-a-patient-advocate-discovered-a-mas
sive-security-problem-with-closed-groups-on-facebook-and-became-a-white-hat-ha
cker/

Kathy, thank you for all the work you do on behalf of other patients
who may not know they can speak up! I hope someone captures the
lessons and protocol changes so that they can spread further than
that one practice. Peer patients and survivors can do this work in
community. Another model is a Learning Health Network, which in the
best cases incorporates insights from people with lived experience
AND the clinicians AND the scientists involved in care & research.

See:
https://www.cincinnatichildrens.org/research/divisions/j/anderson-center/learn
ing-networks

And:
https://www.hivenetworks.com/lhsnm 
  

    
Kathy, it's great that your caregivers listened to you and even
greater that they changed your protocol to suit patients' needs.
It's sad that we see this as unusual. Medicine ought to work this
way.
  

    
     I have a PCP who I see every 3 months just so I can get
encouragement. He reminds me I am a strong 83 year old woman and
that I am in charge of making medical decisions and I should also
listen to the cancer doctors. In the beginning I had to make up
reasons to keep seeing him but now he understands that he is my
support doctor.

I do keep a blog both here in the life topic, on facebook and on
blogspot. I want to be visible. 
  

    
Thank you for telling your story. I'm paying attention, because I
might be on the same path at some time.
  

    
Having a PCP that cares about this stuff is CRITICAL (I just
switched because all my old one said was "gee, I'm sorry you have to
go through all this! But sorry, I have no time to see you for the
next six weeks...)
  

    
Kathy, thank you for keeping a blog, on behalf of everyone who
benefits from it. "I want to be visible" is SUCH a key insight since
so many peer-led health conversations are happening in private FB
groups or other siloed online communities. 

In my book I quote Liz Salmi, a brain tumor patient, talking about
the shift from open-web blogging to FB and other closed social
platforms: 

“The shift to short-form posts increases the ease by which people
can provide peer health advice, but that advice is not as easy to
find for
the newbies. How do we get the new patients to start blogging?
Should we?
Surely there are newer voices people should be listening to and
learning from.”

One hope that I have is that AI can help people find and sift
through the mountain of first-person stories to find the
"just-in-time someone-like-you" who can provide the advice needed,
when needed. Note: We need to talk about the ethics of feeding a
community's posts into the maw of an LLM and other issues, but it's
a possible future application to connect people, peer-to-peer.

Here's more about Liz Salmi for anyone curious about this awesome
patient advocate:

https://www.opennotes.org/family/liz-salmi/

https://www.linkedin.com/in/lizsalmi/

@TheLizArmy on X
  

    
The hardest part of becoming an effective patient for me is learning
the medical language, what the words mean and how to pronounce them.
I have spent years reading books just to understand the medical
culture.  

First I read patient memoirs, then doctors memoirs and commentaries
about their training and concerns, and now policy, hospital, and the
financial issues.I am not sure now what I will be researching
through book reading.
  

    
Re AIagents - WHO's SARAH https://www.who.int/campaigns/s-a-r-a-h
which apparently skirts the edges of some ethical and accuracy
issues. I feel so torn about this stuff. Beth Kanter writes about it
here:
https://www.linkedin.com/posts/bethkanter_using-ai-to-lead-a-healthier-lifesty
le-activity-7189276997024464896-U6G7?utm_source=share&utm_medium=member_deskto
p (By the way, Sally James here in Seattle raved about you!) 
  

    
Kathy, which patient/caregiver & doctor memoirs were your favorites?
A few of mine: 

Josie's Story, by Sorrel King
Saving Henry, by Laurie Strongin
Chasing My Cure, by David Fajgenbaum, MD MBA
The Long Haul, by Ryan Prior
The Invisible Kingdom, by Meghan O'Rourke

Thanks, Nancy, for the links and the shout-out from Sally!
  

    
Here are some of the books I have read.
Lloyd Sederer, MD. CAUGHT IN THE CROSSHAIRS OF AMERICAN HEALTHCARE.
Laura Liberman, MD. I SIGNED AS THE DOCTOR
Peter Kennedy, MD. MEDICINE MAN
Jonathan Reisman, MD. THE UNSEEN BODY, the doctor’s journey through
the hidden wonders of the human anatomy
Danielle Ofri, MD WHEN WE DO HARM, a doctor confronts medical error.
Nabil Othman, MD.  VIGILANCE, an anesthesiologist’s notes on
thriving in uncertainty.
Wendy Lau, MD INNER PRACTICE OF MEICINE
Victoria Sweet, MF . SLOW MEDICINE, THE WAY TO HEALING
Atul Gawande, MD. BEING MORTAL, MEDICINE AND WHAT MATTERS IN THE
END.
Anne Boyer, THE UNDYING,  a meditation on modern illness
Danielle Ofri, MD. MEDICINE IN TRANSLATION, journeys with my
patients
Jerome Groopman, MD. HOW DOCTORS THINK
Atul Gawande, BETTER, A SURGEON’S NOTES ON PERFORMANCE
Adam Kay, THIS IS GOING TO HURT, secret diaries of a junior Doctor
  

    
a vote for a fictional title: "sometimes people die' by simon
stephenson. british/set in a fictional under-resourced london
hospital...
loved the tv series 'this is going to hurt'...
  

    
Gawande is marvelous. Not Certain that I have read any of the others.
  

    
I would add e-Patient Dave deBronkart's books, LET PATIENTS HELP;
LAUGH, SING, AND EAT LIKE A PIG: How an Empowered Patient Beat Stage
IV Cancer (And What Healthcare Can Learn from It); and FACING
DEATH-WITH HOPE. Dave has been a leading patient advocate and
speaker for years now. Susannah mentions his story in her book: Dave
was diagnosed with stage IV, grade 4 renal cell carcinoma, and
working with his physician, Danny Sands, found a treatment that
saved his life. He's still going strong 17 years later, and in the
interim he's dedicated his life to the patient-led health
revolution.
  

    
Yes, thanks for adding Dave's books to the list, <jonl>.

In writing REBEL HEALTH I chose to tell stories about a wide range
of advocates and change agents to show that this revolution is not
just for people with diabetes or cancer or ALS or Parkinsons or rare
diseases or heart disease or [fill in the blank]. The partnership
that Dave and Danny forged as a patient-clinician duo should be
possible across many health challenges -- if you're lucky enough to
find a primary care doctor!!
  

    
Danny is a great model. Physicians like Danny understand the
importance of listening to the patient - that the patient can be an
active, fully-participating member of the healthcare team.

I assume some patients won't want this, or won't be able to grasp
it. How can a physician judge to what extent the patient can and
should be included? I wonder if any medical schools or organizations
are teaching best practices for patient collaboration?
  

    
The book I am reading now is THE UNSEEN BODY by dr. Jonathan
Reisman. He talks about the interconnections of all parts of the
body, which is not what I learn from the specialists that are
treating me. I have to be aware of this since they don't seem to be.
My swollen fingers are related to the immuno threatments in the
bladder. The specialist won't treat this,  MY PCP might.  Or I will
treat it myself.
  

    
This might be a good place to remind Well members that <inkwell.vue>
is a publicly visible conference.

If you reconsider and want to delete a post because it contains
private information, click on its number and choose “scribble.” You
only have this option for your own posts.
  

    
Thanks, <mazz>. "Public" on the WELL can have other meanings, but in
this case, it means that the conference is readable by persons who
are not members of the WELL, i.e. "world-readable."
  

    
wanted to present a POV from the abyss staring up and out:

- among other things i have long suffered with multiple chemical
sensitivity, a malady everyone hates and little can be done for ---
greeted with even more antipathy than ME/CFS, where our julie has
done so much good. anyway, my pseudo-medical model is 'complex
neuroimmune system dysregulation' --- but of course means little.
anyway back in the 90s there was a wonderful woman named susan
molloy, who started environmental health network (just what it
sounds like); set about to create ecology house (1st mcs-safer
low-income housing in the country); and produced the monthly "new
reactor', this was a fantastic publication: combo of recommendations
for products + services/classifieds/research [at times, ppl in the
research community would reach out to her to find ways to study us),
memoir, and just -stuff- that someone with a fine editorial eye
curated.

she died and 'new reactor' with it --- and i never found anything
close to it in terms of signal to noise ratio. we are all so
different from each other that what works for one of is might not
work/be tolerable for another. had similar experiences when i dipped
into TBI support groups about 10 yrs ago.

idea here there is no replacement for a smart capable person
handling info flow.

- am  in another group --- [dont laugh] for disabled creators on
patreon. yes we can actively empathize with each other, as for
example what it's like to have a bad day/week/month and not be  able
to be productive. but am struck that we mostly cannot help each
other: battling with bureacracy/being broke/needing support of all
kinds which just isnt available --- well, no help for it. 

which is not to disagree with the 'rebel health' notion; what i
experience is the loss of solo practitioners not tyrannized by a
'health care system' who have the time and experientially-learned
clinical intuition to be truly of assistance/great resources. my
three main guys like this have all died in the last five yrs (they
were in their 70s) --- and we wont see their like again, i dont
think.

[carry on].
  

    
I am driven to tears reading that, Paulina. It resonates. I think so
many of us are blind to the amount of energy it takes to operate as
someone "different" in our world, AND at the same time, how many
people carry these differences that present challenge in their life.
It is like an open secret. I'm struggling to find words. My LGBT!+
grandperson who is brilliant, carries social anxiety, adhd and
probably Autism, has taught me SO MUCH. And what this 14 year old
already has is an amazing sense of and practice of self advocacy.
Gives me hope. So much more to say... and at the same time the brain
fog from meds making clarity elusive!!!
  

    
i will also point out that the mainstream (as in, centers for
independent living) disability is ignorant/indifferent/hostile to
folks with mcs. we arent the right kind of disabled...