“ Well I better start planning my funeral “
I said aloud to my mom in a “joking “ matter but was pierced with how real that statement felt after we both sat through what felt like another failed appointment with my immunologist.
I understood that I was .. And well am a “hard case . “Pretty severe CVID ( along with a plethora of other health issues ). And deathly allergic to IVIG .. aka the one treatment I absolutely need to keep me alive .
But after another stint in the ICU , after another severe reaction to
the treatment I received
All he had to offer was nervous laughter and the continuous statement of
“ I don’t know what to do with you “
“ I don’t know what to do next “
“ I just don’t know “
I wanted to leave that appointment with a game plan , and all I left with was anxiety .
After every appointment with him I had felt pretty hopeless
But this was a whole new level.
My IG levels were plummeting .
I had been catching every infection known to man .
I just about died from the treatment that’s suppose to save my life .
And all I get from the one person on this earth who was suppose to know how to help me is “ I don’t know “
Either my “funeral arrangement” thoughts weren’t far off…Or I really needed to consider making some major changes.
And these major changes would begin with switching immunologist.
But I felt a sense of loyalty to my doctor . I mean he was the one who diagnosed me .
And I thought to myself
“ Maybe he was just having a bad day .”
But for months after every single appointment with him . I had felt hopeless .
That’s more than just “ One bad day “
As I was sitting on the couch pouring out this internal struggle to my mom , debating on what to do next
She asked me one question that changed everything.
My mom mentioned “ You hired this doctor to do a job .. and is he actually doing it ?”
Which changed my entire thought process as I thought out loud .
“If he was a cosmetologist, and after a couple of really good haircuts, he was now giving me super ugly haircuts every time I saw him, Would I continue getting my hair cut from him? “
The answer was an obvious NO!
A lightbulb went off as I made the realization…
If I wouldn’t put up with a bad haircut . Why am I putting up with countless bad health appointments with this provider . My health is more important than my hair .
I started scouring the internet looking for new immunologist that night .
We have given Doctors the highest amount of trust out of any and every professional we hire.
I mean we don’t come to them with a flat tire, toilets that need fixing, hair that needs taming, or a suit that needs alerting,
We come to them, trusting them to fix…US!
We come to them weak, vulnerable, scared, sick, sometimes almost literally with our heart in our hands uttering one not so simple statement .
Heal me .
And if you can’t heal me .
Help me at least feel better.
And we gain a trust in these people who are trained to do this impossible task.
But when they don’t do the job they are hired for.
When they don’t try,
When they don’t listen,
When all they leave you with is
“ I don’t know “ and no other helpful, suggestions or options.
It is just as bad as a plumber leaving you with a toilet that still doesn’t flush ,
Or a cosmetologist leaving you with a bad haircut, or half a haircut.
I’m not saying all doctors or horrible
Or if they can’t heal you .. dump them.
I fully understand that the human body is WAY more complex than a houses plumbing system .
I’m not even saying leave them after one bad appointment (if you had a bunch of great ones with them in the past)
Because Drs are human, and we all have our bad days.
I’m saying, their job is to help you feel better, and sometimes the most helpful thing a doctor has said to me is…
“ I dont know how to help you . So let’s send you to someone who might. “
Or “ I don’t know exactly what’s wrong or how exactly how to help you. But that doesn’t mean I’m going to give up on you . Let’s try this plan first , and if that doesn’t work we will go back to the drawing board. “
If you leave appointment after appointment feeling hopeless.
Why are you still going to them?
If they aren’t trying to help you, or sending you to someone who can.
They aren’t doing the job you have hired them to do.
A doctor is done with your disease the second they close your file.
You are the one who has to live with it 24 hours a day 7 days a week.
And you deserve help in that fight.
You deserve a provider who tries, cares, and gives you hope.
If a certain provider came to your mind as you read this, one who isn’t doing the things I listed above. It just may be the time to switch.
Never stop advocating for yourself! #smileon
Comments
Post a Comment