Bladder Problems #lupus #stillsdisease

I shouldn’t be awake right now, but between midnight and now (3:50am) I slept too deeply. There is such a thing, unfortunately. I didn’t drink enough water for those hours I was asleep. Enough water for me, anyway. I have a problem with my bladder that has largely been ignored by my doctors, save for multiple useless urine tests. I get pressure and burning in my bladder and urethra if I don’t drink enough water. “Enough water” for me is about 7-8 bottles, which is almost twice the recommended daily amount, and the end goal being to dilute my urine enough so that it doesn’t irritate my bladder. I don’t recommend drinking that much water as a solution to a burning bladder. I am also chronically thirsty and I can’t seem to help it.

I have had every wee wee test ever to see if the burning is perhaps bacterial. I have no infection whatsoever, and never have. I’m assuming then that the burning is due some chronic inflammation caused by the Lupus or the Still’s Disease, and exacerbated by acidic urine. People don’t realize that with auto-immune and auto-inflammatory diseases, there are symptoms that are unexplainable that are caused by random inflammation that are not listed under typical symptoms of the disease. Everyone’s disease activity is different and inflammation can happen anywhere for no apparent reason. Bladder irritation isn’t the only type of mysterious inflammation I get. I also get it in my eyes, nose, mouth, esophagus, and stomach on a daily basis.

If I drink enough water, I can curb the burning most of the time. It sometimes still bothers me regardless. It’s not hard for me to drink a ton of water, as I seem to have unquenchable thirst, which is a whole other issue. The problem with drinking that much water is that I spend a decent amount of my day in the bathroom. When I recently gave a 24-hour urine sample, the final measurement was 4700mL, and normal 24-hour output is between 800-2000mL. My nephrologist actually asked me if I peed in the containers for more than 24-hours. I was pretty irritated with her. I’m sick, not stupid. Why would I continue to do something that is an absolute pain in the ass for longer than I have to? They do make over-the-counter pain relief for the burning problem, and I’ve got both Azo and Cystex on hand for when the burning gets out of control. The only problem with them is they are very irritating to the stomach which brings on another array of issues when I have to take it. I took some right now after eating some cereal, and now I am having acid reflux and pain from the gastritis, which means I can’t go back to sleep until the acid stops. I ate some food and took some antacid in hopes of protecting my stomach and it was a crap shoot as usual.

I could go see a urologist, and have them scope my bladder (which is extremely painful) and subsequently shrug their shoulders at me, but I really don’t see a point in going through all that. There isn’t a lot they can to for cystitis, especially when it’s not caused by an infection. They would probably diagnose me with interstitial cystitis, which can be a disease by itself and doesn’t have much of a treatment plan. I really do think that my cystitis is secondary to my other diseases and not a disease by itself. It is my hope that eventually the Actemra infusions will eliminate these random inflammations throughout my body and I can stop storing water in my hump like a goddamn camel.


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