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.

Gluten-free #lupus

I’m almost a week into eating gluten-free. I went to Whole Foods and I bought all the gluten-free staples, pasta, bread, crackers, and a few other things. It was a good reminder how fucking expensive it is to be sick. I basically doubled my grocery bill. A loaf of gluten-free bread runs around $7.50. It’s hard to find anything in Whole Foods that is under five dollars.

So here I am, wandering around this supposed health-food wonderland, still having to put items back because of certain contents. I was finding that a lot of the products, while “organic” or “yadda-yadda-free” still have an unhealthy amount of sodium or sugar in them. Maybe it’s just me, but I feel like for what they charge for groceries, I shouldn’t even have to double-check the nutrition facts. Whole foods is a gluten-free superstore but for anyone that has to eat low-sodium or low-sugar, it is as frustrating as anywhere else.

I guess my point is, no matter how “healthy” packaged food claims to be, it just isn’t.

The gluten-free foods I’ve been eating haven’t been that bad, but you can certainly taste a difference. It’s like eating NASA space food. It just doesn’t seem like real food. If it becomes all you eat, you could probably get used to it…eventually. Mostly my problem with eating these foods is they don’t seem to digest. I feel full for hours after eating it, and it’s not a good thing. I have gastritis and I already have a problem with feeling full too easily or for too long. It’s uncomfortable and at this point I’d just rather eat real rice than pasta made from processed doughy rice foodstuff.

The organic vegetables have been pretty great. I might try to buy them more often. I’ve been eating more of a variety since going to Whole Foods. Between the acid reflux and the salt and sugar sensitivity, my diet hasn’t been as nutritionally varied as it used to be. I figured I can try to get some variety by starting to eat different vegetables.

My stomach doesn’t feel any better since eating gluten-free. The doctor just wanted me to try it for the heck of it to see if it would help the inflammation. He didn’t want to put me on any prescriptions right away because they can sometimes cause problems with calcium absorption and weaken your bones. I understand his point, but also my diet restrictions are ridiculous, and could also be causing deficiencies in other vitamins and minerals. I can’t have anything even remotely acidic. If I eat one wrong thing I could risk being up all night with acid reflux. I’ve basically given up fruit. Food is depressing.

I wanted to go see a dietician so maybe I could get a clue as to what the fuck to eat. Most of them don’t take insurance. They seem to be part of that “Malibu Barbie” plastic-surgery-gym-health culture, and I don’t know how much they would be able to help someone like me. I can just picture walking in to a clinic where everyone has fake tans and fake tits, and feeling totally out of my element. I don’t want to be in an environment where they’re trying to sell me something instead of trying to help me. Perhaps I’m getting too far ahead of myself. But I want a dietician that practices real medicine. It would probably help if I didn’t live in California.

End rant.