#actuallyic

[boywithbear]

[icsurvivor]

[koscheix]

Still highkey annoyed that Joe in You said that IC may be psychosomatic. Ok then u have it

[boywithbear]

Can we start using the tag #actuallyic for Interstitial Cystitis? I can't believe I haven't seen an actually tag been made for it

I'm gonna start using it and maybe try to find old posts I've made and tag it ^.^

[icsurvivor]

Flare Tactics!

If anybody’s interested, this is how I figure out what’s causing a flare, and how I treat each different kind. I get three different kinds of flares:

• Food offender

• Pelvic floor

• Hormones

So to figure out which one is happening I go through a little mental checklist:

Did I consume anything new today? Anything at all? Any possibility in hell I consumed something with a “hidden” trigger (like preservatives/colorants)? Timing is also another big clue. For me it’s very often exactly five hours after I had something questionable. If no, go to second step.

Second step is checking pelvic floor. Have I been under a ton of stress and not walking or exercising? That will usually do it. I test this by lying down in Reclining Bound Angle Pose. If the urgency gets a LOT better when I do that, then I know it could be pelvic floor.

Third step is checking an app called Flo, which I use to track my cycle. This is a lot less useful than it used to be since I’m hitting perimenopause and it’s all over the place now, but can still provide clues. If period looks like it’s due soon or I have other signs of ovulation (sore boobs, etc.) then there’s a good chance it’s hormones. If I’ve been good about food triggers and getting in walking, and pyridium only seems to take the edge off a little bit, then I know this is the likely culprit.

* Treatments:

With food offenders, my mainstays are pyridium and if it’s bad enough, lidocaine instillations with Elmiron. These usually calm down in 24-48 hours. If it DOESN’T, that’s a clue it might be a UTI or hormones.

Pelvic floor: a pelvic floor wand and Flexeril. I used to use Toviaz for this but I like Flexeril better, though I can only take it at night because it makes me SUPER sleepy. Then I make sure I try to start walking again as soon as I can.

Hormones: These are difficult. They are fairly merciless and the only thing that seems to help me with these is Tramadol and CBD. And pyridium. Lots and lots of pyridium. My rescue instillations with lidocaine don't seem to do crap for hormone flares, weirdly enough. These are slowly getting more muted the more I do Elmiron instillations...slowly.

COMBINATION FLARES are the most fun. Sometimes there’s more than one thing going on—like eating something bad during a hormone flare. Those can be figured out by a process of elimination too, but often the solutions only half work, and that’s how I know there’s a flare combination party. This usually requires MORE medication, and then the next day is basically a writeoff.

It was HELL until I got this figured out. Using the wrong meds and tactics for the wrong flares made me feel like nothing was EVER working, and I was constantly flared up and feeling helpless. If your IC feels completely out of control, I say make it your mission to figure out exactly what KIND of flare it is, and then hit it with the right things. Life gets so much better after that.

[icsurvivor]

SO MANY PILLS

The days of shoving a singular vitamin in my mouth in the morning went out the window a long time ago. These days I dread setting up my pills because it takes FOREVER, but the only thing I hate more is having to do it every week, so I now do it for the whole month. First I have to sit down and have a glance at what I did with my last set. Did that herb last month make things better or worse? Should I up the dose of this thing? Will taking these two things at the same time make my liver explode? I plot out a plan and write it down in Evernote. Then it's time to gather and assemble all the bottles. There's a lot, and most of them are for bladder repair in one way or another. The current group: vitamin D, L-arginine, glucosamine & chondroitin, aloe vera, calcium glucarate, iron, CBD, palmitoylethanolamide, and the occasional B vitamin when I'm feeling brave (bladder actually hates this, but I'm getting low). A couple others I'm probably forgetting. I think Celexa or Lexapro is going to happen again but I'm still figuring out the best timing, and Elmiron is now taken on the other end with catheters, so those are set aside. Once the bottles are assembled, I start putting them in the right places, and once I start, I can't get interrupted--because ALL THE DAMN PILLS ARE WHITE. If I lose concentration there's almost no way to tell which pills I already did. I can't afford to under or overdose myself, so if I fuck things up at this stage I have to throw it all out and start over, and that sucks really bad so I usually put on headphones and try to ignore everything around me while I'm doing this. Sleep meds don't go in, because I usually have to take something a little different every night and you don't want to hear about that. Sleep will not occur without meds, and after decades of dealing with this, I am done fighting this basic fact. (It's most likely tied in with the whole syndrome I'm dealing with and not going away). I have a whole *other set* of medications for fighting flares, and those don't get put in any boxes because I have to take a different thing and amount for each kind of flare when they happen, and I have to consider a lot of things, like where I am in my cycle and what I've already ingested for the day. One of the best things I ever did a couple of years ago was finally getting clear on the three distinct culprits that cause them for me. Each requires completely DIFFERENT medication, and figuring this out was...huge. I no longer felt helpless when things went sideways. Now that I usually know exactly why it's happening and how to deal with it, I feel a little less frustrated. It still sucks but I feel better knowing it's not completely random. Elmiron is the special pill--it's a prescription that I credit with putting me into remission about a decade ago. I just started taking it again recently (with the catheters) and it appears it's already doing twice as much good as all the "natural" stuff above. The supplements sometimes work just as well or better than Elmiron for some IC people--lucky them!--but it looks like I'm not one of them, which to be honest is kind of what I suspected given my mother's long, long relationship with it. However, the CBD definitely did dial down a lot of nerve noise, so that stays, and I'll probably keep taking at least some of the supplements for insurance. I don't really know what my point was with all this. It was a great way to procrastinate doing the pills again 😆

[boywithbear]

when you desperately need to nap from the fibro but the ic has you literally stuck on the toilet bc you cant stop peeing

I cant wait for pain management tomorrow

gonna try to make bts pride pics rn to stay awake

[icsurvivor]

If anybody’s interested, this is how I figure out what’s causing a flare, and how I treat each different kind. I get three different kinds of flares:

• Food offender

• Pelvic floor

• Hormones

So to figure out which one is happening I go through a little mental checklist:

Food: Did I consume anything new today? Anything at all? Any possibility in hell I consumed something with a “hidden” trigger (like preservatives/colorants)? Timing is also another big clue. For me it’s very often exactly five hours after I had something questionable. If no, go to second step.

Second step is checking pelvic floor. Have I been under a ton of stress and not walking or exercising? That will usually do it. I test this by lying down in Reclining Bound Angle Pose. If the urgency gets a LOT better when I do that, then I know it could be pelvic floor.

Third step is checking an app called Flo, which I use to track my cycle. This is a lot less useful than it used to be since I’m hitting perimenopause and it’s all over the place now, but can still provide clues. If period looks like it’s due soon or I have other signs of ovulation (sore boobs, etc.) then there’s a good chance it’s hormones. If I’ve been good about food triggers and getting in walking, and pyridium only seems to take the edge off a little bit, then I know this is the likely culprit.

* Treatments:

With food offenders, my mainstays are pyridium and if it’s bad enough, lidocaine instillations with Elmiron. These usually calm down in 24-48 hours. If it DOESN’T, that’s a clue it might be a UTI or hormones.

Pelvic floor: a pelvic floor wand and Flexeril. I used to use Toviaz for this but I like Flexeril better, though I can only take it at night because it makes me SUPER sleepy. Then I make sure I try to get walking again as soon as I can.

Hormones: These are difficult. They are fairly merciless and the only thing that seems to help me with these is Tramadol and CBD. And pyridium. Lots and lots of pyridium. My rescue instillations with lidocaine don't seem to do crap for hormone flares, weirdly enough. Fortunately these are slowly getting more muted the more I do Elmiron instillations...slowly.

COMBINATION FLARES are the most fun. Sometimes there’s more than one thing going on—like eating something bad during a hormone flare. Those can be figured out by a process of elimination too, but often the solutions only half work, and that’s how I know there’s a flare combination party. This usually requires MORE medication, and then the next day is basically a writeoff.

It was HELL until I got this figured out. Using the wrong meds and tactics for the wrong flares made me feel like nothing was EVER working, and I was constantly flared up and feeling helpless. If your IC feels completely out of control, make it your mission to figure out exactly what KIND of flare it is, and then hit it with the right things. Life gets so much better after that.