The Brochure on Managing Pain & The Power Of Advocacy

Send us a text

The healthcare system doesn’t hand out a manual or a how-to brochure for that matter about how to deal with health issues. After a hospital discharged us with no pain meds and no clear plan because we declined surgery, we faced a stark choice: wait and watch strength fade, or push for access to a team that could actually help. In this episode, I walk you through the messy middle—how we navigated private medical transport when an ambulance wouldn’t cross districts, how a simple wheelchair pivot got us through ER doors, and why a 26-hour stay still felt like progress once a thoughtful plan came together.

You’ll hear what advocacy looks like at eye level. I talk about the emotional load: the exhaustion of showing up every day, the friction when a long-time diabetic gets talked down to, and the constant triage at home with pets, traffic, parking, and the Halloween lights that stubbornly stayed on while life and its challenges kept moving forward.

This conversation is for anyone who loves someone in pain, anyone juggling chronic conditions with acute crises, and anyone who suspects that “trust your doctor” needs the companion phrase “and verify the plan.” We share the small wins that sustain momentum, from a wheeled recliner that gave needed sleep to a care team willing to explain their thinking and aim for a selective nerve block once blood thinners clear. It’s a candid look at how to move from helpless to purposeful, one decision and one question at a time.

If this resonated, follow the show, leave a review, and share it with someone who might need the courage to advocate today. Your story could be the nudge another caregiver needs.

For the Only Child Diaries:
Check us out on Facebook https://www.facebook.com/onlychilddiariespodcast/
or
Instagram https://www.instagram.com/onlychilddiaries/
or
Threads
https://www.threads.net/@onlychilddiaries
and on
Bluesky  https://bsky.app/profile/onlychilddiaries.bsky.social

Episode Transcript

Tracy (00:00):
Welcome to the Only Child Diaries Podcast.
I'm your host, Tracy Wallace.
Have you ever felt like youdidn't receive the how-to
brochure on life?
That you didn't get enoughguidance about major life
issues?
So did I.
You don't have to be an onlychild to feel this way.

(00:21):
In my podcast, we'll exploresome of the best ways to better
navigate adulthood.
By doing so, welcome everyoneto the Only Child Diaries
Podcast.
Today I'm gonna talk more aboutan ER visit that we had

(00:48):
recently and just the state ofmedicine.
But I'm also going to talkagain, I believe I've talked
about this before with you,about advocating for your loved
ones' health.
This is a really importanttopic.
If you love anybody, becauseanybody can get sick or injured

(01:11):
at any time.
And sometimes finding the rightcare is vital to their health
and well-being.
Now, if you're a regularlistener, you know that early in
October, my husband was in thehospital because of some falls
that he had here at home.

(01:32):
And that he has two bulgingdiscs in his back that were
causing him some issues andstill are causing him some
issues with pain and weakness inone of his legs.
The hospital discharged him assoon as we told them that he

(01:56):
didn't want to have surgery.
Surgery isn't always the bestoption for a lot of reasons.
Well, they sent us home with nopain meds and really no clear
plan or referrals on who to goto.
But we did get home health.

(02:18):
We got a visiting nurse, we gotphysical therapy at home or PT,
we got a bathing nurse once aweek, and we got a wound care
person once a week as well,because he had um uh not a bed
sore, but he had been using theheating pad initially, and he

(02:39):
had gotten a blister from that.
So we did have some support.
Now, his pain was increasingthough, and that was worrisome
to me and to him because hereally couldn't get out of bed
after three weeks at home.
He was in too much pain to evensit up.

(03:01):
I started thinking about wherethis was all going.
Do you ever do that for anyscenario in your own life?
Where are we headed?
What's gonna happen?
What are the next steps?
Sometimes this is reallyimportant, right?
You can't always rely on theexperts or the professionals.

(03:26):
And again, we were really up acreek without a paddle.
I talked to my husband and Isaid that we really needed to go
back into the hospital, ifnothing else, for pain control.
We had a limited amount ofnorco because narcotic pain

(03:46):
relief is so hard to get in ahome setting, right?
So I could see that he wasreally suffering, but we didn't
have enough pain meds to reallycover him for very much longer.
And if you've ever watched aloved one in pain, it's really a

(04:07):
helpless feeling.
Okay.
So we talked about what to do,what are our options?
And some of his best doctors,his spinal surgeon, who did the
two neck fusions on him back inuh 2017 and 2018, and also his

(04:28):
nephrologist, who operatesmostly as his general
practitioner, are both at CedarSinai.
Now, even if you don't live inthe Los Angeles area or even the
United States, I know a lot ofpeople have heard about Cedar
Sinai because it's where a lotof Hollywood's elite go to be

(04:52):
treated for whatever reason.
And it's on the edge of BeverlyHills.
It's in a posh area, shall wesay.
But it's not just all aboutappearances.
Cedar Sinai has a really greatmedical team, really great
facilities, and really greatdoctors.

(05:13):
Sure, not everybody's great.
Sure, there's problems, butoverall, and certainly in
comparison to what weexperienced in the first
hospital visit, it's far andabove.
Okay.
We live about 14 miles fromCedar Sinai.
So the way things work, I can'tjust call an ambulance and have

(05:39):
him sent over there.
Because an ambulance is onlygoing to take him to the nearest
hospital.
I started calling medicaltransport companies.
And most of them said, no, wecan't take you.
He has to go on a gurney,right?
If he could sit in awheelchair, it would have been

(06:01):
easier, but he has to go on agurney because he can't sit.
It's too uncomfortable.
I did talk to one company thatsaid that they could do it, but
it would cost about $2,000.
Now, I I have the resources todo that, but the guy felt bad,
you could tell.
And he said, Why don't you callthis person?

(06:23):
And that's what happened iseach company gave me another
company to call.
Finally, I found somebody thatwas willing to take him for
$300.
Not too bad.
I knew it would be a roughtrip, right?
Okay.
So that morning the truckpulled up and I went out to talk

(06:45):
to the guys, and um theyweren't completely filled in on
the process.
And when I told them, they werelike, well, you know, they're
not gonna want to take him,they're gonna get mad at us.
I said, let them get mad at me.
I didn't really understand.

(07:05):
And and if you're a medicalperson, please be patient with
me.
Because after going throughthis, now I do understand.
But I'm gonna explain it toyou.
Well, I was ready to get downand beg, right?
Hold on to their legs, cry attheir feet.
But in the end, we decided togo.

(07:28):
They loaded them up in thegurney and off they went.
I followed in my car.
They got there first and theycalled me and said that they
weren't gonna take him.
When I got there, the driverand his assistant said that they
talked to a security guard whoexplained that if we could get

(07:50):
him into a wheelchair, it's apadded wheelchair, but still,
that they would take him.
He could be wheeled into theER.
So that's what we did.
We got him into a wheelchair.
Now, my poor husband gets verycar sick.
He has a lot of motion sicknessin a car.
And imagine laying flat in theback of a van.

(08:13):
Well, he had thrown up all overhimself.
I mean, I I felt so bad.
I should have brought sometowels with me, but I didn't I
didn't think about it.
So we got into the ER and theywere asking me questions about
his condition.
And we had to wait for triage,we had to wait for vitals, we

(08:35):
had to wait for the EKG, we hadto wait for the blood work, and
all the time he's screaming inpain.
Well, the guys from thetransparent company were great,
and they found a recliner andthey lifted him into that, and
he promptly fell asleep, whichwas a good thing.

(08:55):
We waited about two and a halfhours until they called him in.
Luckily, the recliner hadwheels on it, and they wheeled
him into the back, and thenthese things just warmed my
heart.
About six people gathered topull him out of the recliner
onto a gurney.

(09:16):
Now, I get it, because we wereon a gurney in a hallway next to
the nurses station.
Yes, it was that busy.
It was it was busy.
It's because they're so good,and it's and it's also, I'm
sure, other reasons as well.
Staffing, insurance, resources.
But we were inside.

(09:38):
They eventually moved him to anenclosure with a TV, which was
great.
But in total, he was in the ERfor 26 hours.
I get it.
There just weren't a lot ofextra gurnies around.
I looked, believe me.
The care so far has been great.
Yeah.
Does he like everything?

(10:00):
No.
My husband can be grumpysometimes, and especially
because he's in pain, he's notalways the happiest of campers.
But there is a plan.
They want to do a selectivenerve block in his back, but
they have to wait until theblood thinners get out of his

(10:22):
body.
I just have to say thatadvocating for yourself or your
loved one is so importantbecause if we hadn't taken this
proactive step, he would havejust languished in bed.
There was no way that I couldhave gotten him in the car to a

(10:46):
doctor's appointment.
I had checked in uh the weekbefore with his um spinal
surgeon's office, and we couldhave done a video call or a
phone call, but to schedule thatwould have taken another month.
And I just don't feel like wehad another month to languish

(11:08):
here.
And in the meantime, I wasdoing everything for him.
I mean, everything.
Um, because he couldn't get outof bed.
And, you know, they say thatfor every day that you spend in
bed, you lose so much of yourstrength.
I forget what the um what theformula is.

(11:31):
I'm worried about that.
And I'm also worried about bedsores because now he's been
laying in bed for about a monthand a half.
And, you know, we can't haveany more wounds.
We can't have wounds on hisfeet, we can't have anything
else go wrong, but just the factthat he's been in bed so long

(11:52):
is a big issue, right?
So yeah, it wakes me up in themiddle of the night and I can't
go back to sleep.
But I know now that he's in thebest possible place.
Um, everybody's very caring andthey're looking at everything
and they're trying, they'retrying their best.
And they really are a cut aboveuh all the other hospitals, and

(12:17):
certainly the last hospitalthat we were at.
It doesn't even compare.
I I'm just rem reminded of myparents in the last few years of
their lives.
Um, my dad was uh type twodiabetic, and he had, you know,
other issues as well.
But I remember my mom tellingme that they they both trusted

(12:43):
their doctors.
And I remember talking to mymom about diabetes, and there
was a lot that she didn't knowabout being a diabetic in
regards to my dad's condition.
And sure, she was older, andsure she had Parkinson's, and

(13:05):
she was I mean, she wouldn'tadmit to this, but of course,
but she did seem to have somedementia.
And so talking to her about allof this was a little confusing
to say the least.
But I think a lot of people dojust trust their doctors, and

(13:30):
sometimes you have to lookbeyond what your doctors are
telling you and and what thecare is that you're getting,
because especially if you havechronic conditions, you just
need to really push.
You really need to ask the hardquestions, and you need to

(13:51):
really make sure that everythingis going in the right
direction.
And so I've tried to spendevery day at the hospital with
my husband.
He is able to advocate forhimself.
I've I've kind of I've kind oftaught him that.
But it's but it's frustratingand it's tiring for him.

(14:15):
And I feel like at least heneeds moral support, right?
He needs to have somebody thereon his side.
I mean, not that the medicalstaff isn't on his side, but he
doesn't always like to be toldwhat to do.
And being a diabetic for solong, he's he's been told a lot

(14:36):
of times, oh, you should dothis, you should do that, and he
already knows, right?
And so he feels like he's beingtalked down to, and that's
frustrating and and tiring forhim.
And I think it's especiallyhard if you're in pain, right?
So I've tried to go every day.
I've tried to be there for himand support him.

(14:58):
Um, I'm not I'm not goingtoday.
I'm gonna try to take the dayoff.
His brother's gonna go.
But it's it's not an easy drivethrough LA traffic.
There's not really a directfreeway to get there.
You have to go through busystreets, and parking is not
easy, it's not cheap either.

(15:21):
But I'm getting more walkingin.
Um, and I think the other thingthat's hard on us is our pets.
Our dog and our cat miss him.
They also have to be at home alot by themselves.
And that's that's hard on bothof them.
I have to be mindful of my catbecause he gets anxiety and he

(15:45):
doesn't like to be here byhimself, and he wants to have
his routine.
Um, it was hard for him beforebecause people were coming and
going to see Bill from homehealth, and now, you know, mommy
and daddy are both gone most ofthe time.
I just, I just I worry abouteverything.

(16:06):
But we're getting through, andevery day brings kind of a new
challenge but new hope as well.
So still trying to see theglass is half full.
Although some days I'm a littletoo tired to really do that.
Also, I've I'm that neighbor.

(16:29):
I am, because most of myHalloween decorations are still
up.
And yeah, yikes.
And I just I haven't been here.
I haven't really had time orthe energy.
It's not a priority for me.
I need to go out today.
I'm gonna unplug the stuff, atleast so when I turn the corner

(16:51):
at night, it's not all lit uplike a Halloween, you know,
showcase.
But it's been a little bit uhfrustrating in that regard
because I'm, you know, takingcare of the house, taking care
of the pets, taking care ofmyself, doing what I have to do
here, and then driving back andforth, taking care of my

(17:14):
husband, doing I have to bringhim stuff every day or do th do
things for him, make sure hisyou know, devices are charged,
and then I'm also working.
So there we are.
Um, this week is Veterans Day,so thank you to all of our
veterans for your service, it'sa very important thing.

(17:37):
Um, and we'll see what happensthis coming week.
We haven't gotten um very muchinput on when the procedure will
be or when he might get out ofthe hospital.
So that's where we're at.

(17:57):
Um next week.
Well, we'll tackle anothertopic together.
I hope you'll join me.
If you like this episode,please follow the Only Child
Diaries Podcast on ApplePodcasts or other platforms you
might listen on.
And consider rating Only ChildDiaries and writing a review.

(18:19):
It helps others to find us.
Please share it with a friendyou think might like it as well.
Visit my Instagram page, OnlyChild Diaries, or Facebook, Only
Child Diaries Podcast.
Thanks for listening.
I'm Tracy Will.
And these are the Only ChannelDiaries.