It seems like I can keep track of my life since getting too sick to do anything else by referencing all the other health problems that have arisen in addition to these debilitating migraines.

2020 was my autoimmune disease diagnosis.

2021 I contracted Lyme disease.

2022 and hormones.

2023 and wait I can’t see and now I need glasses?

2024 kidney stone.

2025 KIDNEY STONE STILL.

Wait what?

My medical history is nothing if not a confusing mess that doctor’s seem to have never encountered before in their entire careers, thus leaving me with endless questions and no answers and usually some very dismissive experiences.

On Valentine’s Day of last year (2024), I had my first new visit with my new primary care doctor. Doctor number 4 in that realm because Northern Wisconsin has a “keeping doctors on staff” problem. But, to my surprise I awoke to find blood in my urine.

What followed was a few months of effort in order to get actual answers. My doctor at the time was very overworked and follow up labs were totally dismissed. My initial x-ray did not show a kidney stone. By the end of the month, still with blood in my urine I decided to head off to the urgent care myself and simply ask for the CT scan which I’d been told was the next step towards diagnosis.

The CT machine is at the ER, so I ended up being sent over there instead where they hooked me up to a bunch of machines and were ready to administer serious pain medications. They were of course shocked that I said I wasn’t having any pain. An exhausting afternoon later and the CT scan revealed a small 2mm kidney stone that was seemingly lodged just outside the kidney. This doctor’s theory was that the stone would sort of roll around a little and cause a blockage between the kidney and ureter and that would eventually cause a little blood.

I was instructed to drink a lot of fluids and it should pass within a week or so and to come back if I began experiencing severe pain.

Simple enough, but the months dragged on with no indication that the stone would be passing.

Eventually my PCP acknowledged that still having blood in my urine in June was at least something to investigate and that following up with a Urologist to rule out any sort of more severe causes – like bladder cancer – was worth doing sooner rather than later.

Later in June I got in with a Urologist who despite having a very bloody cup of urine dispensed at the office, was insistent that I had passed the kidney stone. They had again had me do an x-ray as my doctor’s office failed to share my previous tests, and this x-ray still did not show a stone. He spent almost 30 minutes talking in circles around my questions, insisting that my lack of any other symptoms meant there was no stone, and that there was no reason for any further testing as I’d obviously passed it. When I brought up my PCP’s concerns, he dismissed them but said if I was really worried I could come back in 6 weeks and they’d do it then.

And five weeks later I bought a house and decided to jump ship on THAT health system. I consulted with my PCP who agreed that I’d need to continue monitoring and that the continued presence of blood as we headed into August, plus a now ever so slight occasional flank pain was likely still a kidney stone and I should continue my care when I got settled.

Flank pain began to become… difficult during August as I began packing my belongings and loading everything into the garage staging it for movers. Moving with a kidney stone is pretty unpleasant and then being in the hot late summer heat in Oklahoma continuing to move is something that really only exacerbates the issue.

And then the blood in my urine totally stopped.

October went by and I began to feel as if I was in the clear.

Early in November I met with my new PCP and since it had been over 6 weeks with no symptoms, I didn’t even bring the entire fiasco up. Maybe everything I’d ever read had been wrong and little ole me passed a stone and didn’t even notice it.

College Football Rivalry Weekend (or as normies call it… Thanksgiving Break) was an absolutely excruciating set of days. I experienced flank pain that kept me up most of the night for days on end. I thought my stone was passing!

And things quieted down just to ramp right back up during the Most Wonderful Time of the year! You know those winter holidays where the doctor’s all have time off! The weekend before Christmas I began experiencing what I then described as the worst kidney stone pain yet. This came with an awful stomach ache and I was pretty double over unable to move, finding relief only in a jumbo Ibuprofen. Something y’all know as regular readers of my past migraine musings, I don’t take NSAIDs! By Monday, I again was in excruciating pain and crawled (theoretically) a few blocks to the Emergency Department.

This hilarious little hole in the wall place did not even take me back, and politely informed that if I wanted my stone out I had to go to Oklahoma City – an hour and a half drive I was in no shape to make. I quickly got an appointment for after Christmas scheduled with my PCP and one set up with a Urology clinic as well.

This PCP appointment was a bit discouraging, as my doctor didn’t really believe I could still have the same kidney stone from the previous February. I can’t be all that upset, as it does feel far fetched, and she was happy to order a CT scan because she fully acknowledged the kind of pain I was in was not normal even if we weren’t in sync on the cause.

I did not make it for the scheduled CT scan and on that lovely Sunday I headed straight for the Emergency Room to get my scan. This time the time passed quicker as thank goodness for football season I simply got to watch football on my phone as I waited to be taken back and then waited a few more hours for the test results.

Those results showed at whopping 6mm kidney stone in the exact location as the stone from February.

Folks, did you know if a kidney stone doesn’t pass it can GROW?

January was a weird month for me.

The Urologist that I saw was open to providing some options – we could certainly try to have the stone pass on it’s own, aided by Flomax and lots of water. But that the stone was simply at the size now that passing it naturally may not be possible. Just the evening before the Urologist appointment, my symptoms had changed and along with a moderate amount of blood in my urine, I suddenly had bladder pressure. The kind that made me stand around like I was 9 months pregnant.

I chose the Flomax route because a potential $1000 surgery was… not something I was interested given my month prior nearly $10,000 sewer repair.

In starting the Flomax, I found myself with an awful constant urge to pee starting in the evening and subsiding by morning. After 3 days of worsening symptoms like this, I decided it was the Flomax causing the issue and decided to discontinue it. A few days later however, those symptoms returned and it clicked that it was very likely a Very Good Thing and a sign of the stone passing.

I then had another CT scan – this time ordered by my Urologist to check the stones location prior to me returning to their office to decide on the path forward. While awaiting those results, I picked up some Pyridium (Azo) to help release some of the tension like feeling of resuming the Flomax. The Pyridium helped a lot at first!

And the CT results came back – a nice call from my PCP – who was happy to inform me the CT scan showed no stone… to which a quick trip to their office to rule out a UTI with my symptoms at least offered peace of mind that I probably did still have a stone based on symptoms and maybe now the stone was moving and I definitely don’t also have a UTI.

One grueling trip back to my Urologist (we’re talking near hour long drives here folks) and he reassured me that based on my symptoms and the terrible need to pee constantly I definitely still had a stone and we could go ahead and get surgery scheduled.

Surgery was now a whole other obstacle as I didn’t have any friends or family in the area and needed to have an escort from the hospital who would be staying with me after being under anesthesia. Figuring all that out and basically begging strangers on the internet to connect me with anyone they may know was grueling. But I found someone’s lovely mother, booked an Airbnb to stay a few days in the city post-op, and was trying not to stress about the $1000 price tag.

Which, was very easy because I rapidly deteriorated over those final two weeks to the point where I had what can only be described as intense vulvar pressure or perhaps constant bladder spasms. This only got worse and worse. Anyone who talked to me on the phone at this point in time basically said I sounded as if I was always holding my breath.

Seriously I don’t know how to paint the picture now that I’m no longer dealing with it, but I’d go pee and that was terrible and no relief would come and I’d pretty much just cry while washing my hands.

And then, just days before this expensive ass surgery I felt this “drop” happen kind of in my bladder and had a brighter toilet tissue full of blood. The next time I went pee, a whopping 7 mm spiky as hell yellow stone came out with it.

I remember staring in disbelief. Jumping for joy. Calling a bunch of people. Calling the Urologist’s office telling them to cancel surgery. This monstrosity of a rock had finally made it’s way out and I could breathe.

We had the stone tested: calcium oxalate

This then led to a slew of blood tests and a 24 hour urine collection to help determine why I made a stone in the first place.

For me this was troublesome because I have low bone density and a family history of osteoporosis so I do have a pretty decent calcium and complimentary supplement routine that is rather critical towards maintaining another area of my health, that could in this instance be a cause for concern regarding my kidney function.

The things that I have learned through all of this have mostly been terrible. The kind of pain I experienced was the worst thing of my life, I thought I was actually dying. On multiple occasions I cried out death screams because of the agony.

And when it was all said and done, I started receiving the bills.

I didn’t really understand what Medicare on it’s own covers and I had no idea what a CT scan costs. Medicare means you still pay 20% of the costs. I have over $1000 in medical bills because of the back to back CT scans (one of which was incredibly unnecessary) and so I find myself drowning in medical debt anyway.

I am now incredibly motivated to get on a supplemental health insurance policy, even if it isn’t a great policy so that I can at least have a maximum out of pocket amount. That won’t save me from CT scans but it will save me in the event of a serious accident.

I am also very motivated to do everything possible towards kidney stone prevention.

Finally, in May I have the results from all the tests.

Normal urine output (like volume) in a day is between 1.5L and 2L. Mine was 0.5L.

Because of this my Calcium levels in my urine were a bit higher. The solution here is to increase how much water I’m drinking so that my urine output is substantially higher.

Now, this is where I felt surprised. I’ve always been told by my doctor’s that I am well hydrated. They point it out when drawing my blood. Again when they go over my lab results. The recommended amount of water to drink in a day varies online from 4-6 cups (what I was drinking) to as high as 11 cups (what I’m drinking now).

This took me by surprise mostly because hydration is a critical part of all parts of health. And lets be very honest here, I am A Very Sick Person! I take medications that can be a risk factor in summer heat because they impact how I sweat. I take enough medications that I’m supposed to be well hydrated when taking said medications. Good hydration is an important part of migraine management and gut health, and especially important for POTS.

And so, I sat down overwhelmed realizing I have to drink more water.

And then more honestly looked at the amount of water I am really drinking – 16 oz (at most) of coffee, which does count towards fluid intake, and then I carry at 20 oz bottle that I aim to refill after dinner. On a good day I am refilling a mostly empty bottle by dinner time and finish off the second fill with my morning meds. All in all coming to probably 50 oz.

On days where I work outside or am in the heat, I fill up that bottle again a lot sooner than dinner and may even start in on a third. These days however are the minority.

The reality looks a lot more like some wasted coffee in the morning, a half filled bottle of water topped off by dinner. which is probably yielding closer to 40 abysmal ounces of water on a frequent basis. I do still think it’s worth noting this is within the 5 cup recommended amount of water that floats around EVERYWHERE.

My doctor wants me to drink 100 oz of water a day.

On day one, this was incredibly daunting and I could not for the life of me figure out how to drink that much water. Being chronically ill, my day doesn’t even really start until after 9 AM, and then I’m off to bed after 11 PM. If you toss one cup of water in with my morning meds, and then leave time to drink my coffee it ends up being a practical goal of “1 cup of water for every hour you’re awake” because I am awake far fewer hours than most people.

I then of course proceeded to hit that goal, and then I hit it again for the 3 or so weeks since I started writing this post, well folks I’ve hit that goal nearly every day.

I thought this would be really hard, and maybe it’s not so bad! It certainly is nothing compared to having a kidney stone.

Amazingly, I have pretty much always had chronically chapped lips and despite trying different lip balms and treatments, I decided it must be one of my medications and that I will always have dry chapped lips. My lips are SUPPLE and SMOOTH after only 3 fucking days y’all.

I don’t really expect anything else to come of this, yes hello raging migraine I am looking at you.

But, my point with the hydration thing is that I have probably never in my life been adequately hydrated. I won’t tell you what the “right” amount of water is for you, but I wont’ not tell you that you could probably do your own 24 hour urine test at home and measure the volume yourself and see if you’re at least peeing enough.

I just think back on all the years of school and the mean teachers never letting us go pee. For so many years I didn’t even carry water with me. And then in high school a singular coffee thermos which was all I drank like all day. Sometimes then followed by a jumbo iced coffee but STILL.

In college I remember bringing my coffee thermos plus my 20 oz thermos of water.

But all in all, I have never drank this much water.

Truthfully, I kept waiting for this all to be over so I could write a little update on here – as my patrons (subscribe if you want help keep this page ad free) but then I thought it couldn’t possibly take months to pass a stone. And then it took like a fucking year!

What I hope folks will take away from my experience is that your own perception of your body is not something to be scoffed off! There were so many points in time where proper intervention (like maybe some Flomax) could have been given and I would not have had to go through the hell that I did.

I spent months with a vague “off” feeling where a part of my back – where the kidney flank pain occurs – was stiff and a little tender. Sitting in doctor’s visits it was as if the presence of the stone was right there with me, sitting inside me saying hello I am here and I could feel it even if the words to describe it weren’t clear because everyone wanted me to say pain and pain wasn’t what I felt.

I curse that first Urologist for telling me there was no stone.

This did not have to end the way it did.

Please drink more water and don’t be afraid to tell that doctor to go fucking shove it.

A.

PS – If you are at all inclined I know I don’t share as many “life” updates here as I once did but I am currently fundraising to help pay off the loan for the sewer repair, if you’d like to contribute you can do so here. I’m about halfway to having it funded which would really free up my credit if any other emergencies pop up.

AND ALSO if you’re interested in the more day to day stuff and want to see updates around the house, I am still posting regularly over on Patreon. The patreon supports this blog, keeping all my previous articles available and ad free + while helping me cover month to month expenses. I’m currently doing an updates around the yard gardening series + DIY home repairs, all available for only $1 a month, but any patronage is greatly appreciated.