Thread by @fightpaindaily

I feel compelled to share an #UnpopularOpinion on #GroundhogDay

While the country is groaning because Phil saw his shadow, I'm reminded of the movie with #BillMurray & thinking about our community

We 're stuck in nightmare loops that keep replaying...Daily, Monthly, & Advocacy!

We seem to be in at least 3 loops, all of which seem to have us trapped.

🚩There is the daily loop.

We wake up in pain and fight our way through the day using whatever modalities we have on hand to manage the pain just enough to have some functionality.

Then we fight to sleep

🚩Then there is the monthly loop - at least for those who have a practitioner still prescribing.

We fill our meds and SOMETIMES that's day 1, other times day 1 is the next day.

We go through the month, safeguarding our meds ...

...and rationing our quality of life as a direct function of our dose & quantity.

For many, as the next appointment or fill date nears, stories of others losing meds or being force tapered get to them.

Anxiety rises until the appointment - did we jump through all the hoops?...

Will this be the month my doctor decides to retire?

Did my doctor get told by the DEA or a regulatory board that they need to taper all their patients?

Many are a basket case until that appointment is over and they can being the pharmacy anxiety (that's assuming Drs went well)

At the pharmacy, anxiety spikes again.

Will the pharmacy have meds in stock?

Will pharmacist decide they aren't comfortable with script?

or

Will insurance refuse to pay?

IF that goes well... we start the monthly loop over again.

🚩The last nightmare loop I am referring to is advocacy.

The same scenes play out time & time again.

Those who shout on social media, keep shouting on social media.

Those who send emails & make calls, keep sending emails and making calls.

Those who do their work in person...

keep doing their work in person.

Every so often, a new group of patients are forced off their meds (or functional levels) and joins our ranks.

They come in full of fire to make the world understand our plight and fix it.

They have the same plans as we did when we arrived...

They are naïve and believe if they tell a reporter or a policy maker that there will be swift change that ends our issue.

Once they realize that isn't true and that many have been doing just that for years, the decide to try attorneys.

They quickly learn we don't have a case.

Then try celeb attention. NOPE.

Most fit into one of two categories within a short time of finding CPPTwitter...

1) they join a private group or 12 & spend hours a day comparing their pain to the thousands of others already in there.

2) they quickly leave CPP social media

So where does that leave us?

It leave pain patients stuck in yet another loop.

Another nightmare where the same things happen over and over.

We are making progress, but at a snails pace and people are still dying and suffering in the mean time.

More than anything, I want to encourage each pain patient and everyone on #MedTwitter and #PharmTwitter to stand up and get out of private groups and out of the twit echo chamber.

Stand up and stand together. 👇

If we need to create a PAC to get new candidates elected and get the word out, lets do that.

Lets discuss new ideas CIVILLY and while giving each person a mutual level of respect.

Patients and Practitioners can work together to fight this without egos or political ideologies getting in the way.

In fact, that is the only way patients will ever get out of these nightmarish, #GroundhogDay like loops.