So, as we know from previous installments, I have a very large staghorn calculus in my left kidney. I have been attempting to have it looked after since 2017, when a doctor with Swedish Renton refused to culture and refused to listen to me telling her I had a history of kidney stones (20 since age 16) and I knew what it felt like.
Instead, she decided without any further testing whatever, that my kidneys had all this protein because I was a “bad diabetic” and “likely you’re kidneys are just beginning to struggle”.
So I had to just live with the pain until we were able to move into a new area and I could try again with a provider that wasn’t notating my file with such crap despite the clear discussions we had over TWO YEARS.
Flash-forward to this week, here in 2021. I am seeing an endo-urologist and lo, not ONLY do I have this bastard massive stone living in my left kidney, it has, literally, taken up every chamber of the organ.
To get an idea of what we’re talking about here, look at the below image:
The illustration shows a large staghorn in the central chamber of the kidney; you can see there are seven, smaller chambers that, in this image, are clear.
Now, imagine if the staghorn in this illustration filled all the chambers, too.
That’s how you get mine.
It freaking hurts. I tell anyone who will listen that it hurts. And today, while talking with the surgery scheduling personnel, they “let slip” that somewhere in notes that I don’t get to see that, according to my doctor, I ‘have a low threshold of pain’.
So now I’m sitting here absolutely livid because, fuck you, no, I do NOT have a low threshold of pain. I have lived with Fibromyalgia since I was a teen, un-diagnosed and untreated because we didn’t know it was a thing and no one in the medical profession would listen. Ditto for poly-arthritis in neck, shoulders, hips, knees, and ankles/feet since I was a teen.
Add on top type II diabetes that likely was a problem from roughly 1993 but was not formally diagnosed until 2009 and not successfully managed until nearly 2012 (education was required; I was so ignorant of the delicacies of this chemical machine I call ‘my body’).
Today, finally, I am on treatments from a rheumatologist that, while not perfect, have greatly helped reduce the neuropathy pain as well as lower the levels of the nerves screaming that is fibromyalgia. I am better managed with the type II, but it’s hard to keep on track as everything from stress to medical issues affect it.
For as long as I can remember, I have been in pain. And I’m so angry that a medical professional is telling people I have a low pain threshold as if her judgement on this particular matter could possibly be relevant for more than spreading a perspective that denigrates both myself, the reality of what I have endured, and the results upon my being.
But! I do not need to like this doctor, I just need for them to do the damned PCNL before we get shut down over COVID-19 ***AGAIN*** so maybe I can live through it and not die of sepsis from an infected kidney stone (which I definitely have at this time).
The earliest they can work on me is SEPTEMBER 2021. And that’s if the hospital administration doesn’t stop all non-emergency surgeries (I’m “only” URGENT… cough) due to their running out of beds AGAIN.
So I’m on macrobiotic and hoping I can go from now until September without dying… because they certainly don’t care about my quality of life or my pain.
It occurs to me that because I’m not rolling around on the ground, they may just assume I’m not in pain. I don’t display pain like neurotypical people do. So I’ve resorted to the pain ranking system they came up with because it’s easier than learning how to actually listen to and believe patients.
I am currently living with level 4-7 pain. It stays between 4 and 5 so long as I literally DO NOTHING; but moving around, bending, twisting? All of that is OUT. If I absolutely must do these things, I require recovery time to let my autonomous system chill back out.
Not that my doctor cares to know. Yes, I know there’s a pandemic on. Yes, I know the medical profession is overworked beyond the “usual overwork” of their industry.
But I also know my doctor put off seeing me for a week so they could take vacation.
I know that because of that additional week, I had to go through another antibiotic schedule to try and knock out the infection in the stone. They still don’t know it’s gone because they haven’t cultured my urine since the beginning of July. They just put me on macrobiotic and are “assuming” (!!) this will be enough to get me alive to the surgery date.
And of course, those snide little secret notes that occasionally slip from the mouths of people who are doing too many things at once to mind which pieces of gossip they pass along and to whom.
So. There. Out of my head and onto the page…. the aging woman’s rant about perceived weakness of age.
I just know she calls me “Karen”. Get this rock out of my back and we’ll see who is entitled or not.