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- Diaper Lover
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- Incontinent
A year ago, I was dx'd with interstitial cystitis.
It has been hell.
There have been times where it just hurt less to deal with damp bottoms for a little bit rather than try to hold it.
For the entire month of Februrary I basically couldn't sleep dry.
Some people don't consider that incontinence. I don't give a rat's fart who doesn't. I had to wear disposables every night because there was no keeping up with the laundry. I'm down to one sposie and praying that things stay as quiet as they have recently--maybe five nappies a week, but in my defense...I tend to end up having multiple problems a night.
I started having allergic reactions to basically everything. And when the allergic reaction cascade hits my body it kinda feels like ACID hits my bladder, which made everything worse.
We get to the week before last, when I had to go to the ER because I had the worst attack of pain I'd ever had. At the ER they had to pump me with so much Toradol that they were starting to think they were going to grab the morphine--it's happened before--but the exhaustion of being in 10/10 pain for several hours plus the megadose finally hitting meant that I got to sleep. Woke up having to basically yell for the nurse, though, because I had a call button thingy that didn't have a functioning microphone and if they didn't hurry up, there was gonna be a problem.
As it turned out, there was in fact a problem anyway--hematuria so bad that it was actually, like. huge, fractal-looking, feathery clots that just ripped off the side of my bladder. The pain was so bad that I spent the next week locked in bed basically, because it hurt too much to sit up. But I still had to go to the allergist, so I wound up muscling through it and going--because I was NOT about to have to attempt another five day stretch without my Vistaril and Zyrtec.
That was the day my allergist said two words that made me go "WHEW:"
systemic mastocytosis.
As you can see, I've definitely been going through hell.
Depending on who you ask, SM could be considered a mild (?!) form of a leukemia-type cancer--it's your body fucking around with a specific type of white blood cell and making waaaaaaaay too many of them, and those cells dump histamine and other chemicals at such a rate that you basically are in HELL for days at a time if a flare kicks up. But my reaction was relief: we had a name. We had a reason. Basically I have a really weird hard to find blood cancer (that some sources don't consider a cancer, but there's enough of them that do that we're being aggressive about it).
"Is there something I can take?"
There was, and I just started it two weeks ago: cromolyn sodium. Eight tubes of it a day total, four times a day, for...the foreseeable future, really. But this medication keeps things under control, and according to my doctor, I might not just stop having allergic reactions to the damn air...my insulin response might get fixed. I might even lose some weight. Stabilizing the mast cells means that, if the problem inside my bladder in particular is the mast cells acting like assholes, my IC might be controlled well enough to be comfortable most of the day. My bladder has been under a level of stress that it never needed to be under, so its strength and capacity aren't great anymore (it's "FUCKING RUN" time at 6oz of pee, ffs)--meaning I'm not getting a 'get out of being a bedwetter free' card anytime soon. And the medication causes horrible diarrhea, and heart palpitations--actually it's triggering my sinus tachycardia, more accurately.
But I just took a Pokemon Go walk without having to hit my inhaler and two chewed Zyrtec at the end of it. (yeah it's that bad) I didn't have to hit ANY of my exposure meds.
IT'S SOMETHING.
I wish I didn't have to fundraise every month to help get house necessities--divorce and attempting to file for disability is rough--but it's SOMETHING.
((Note: in the event anyone wants to help, I'd rather ask and find out the policy on that before I just...GO for it, you know, even though it's rough right now.))
It has been hell.
There have been times where it just hurt less to deal with damp bottoms for a little bit rather than try to hold it.
For the entire month of Februrary I basically couldn't sleep dry.
Some people don't consider that incontinence. I don't give a rat's fart who doesn't. I had to wear disposables every night because there was no keeping up with the laundry. I'm down to one sposie and praying that things stay as quiet as they have recently--maybe five nappies a week, but in my defense...I tend to end up having multiple problems a night.
I started having allergic reactions to basically everything. And when the allergic reaction cascade hits my body it kinda feels like ACID hits my bladder, which made everything worse.
We get to the week before last, when I had to go to the ER because I had the worst attack of pain I'd ever had. At the ER they had to pump me with so much Toradol that they were starting to think they were going to grab the morphine--it's happened before--but the exhaustion of being in 10/10 pain for several hours plus the megadose finally hitting meant that I got to sleep. Woke up having to basically yell for the nurse, though, because I had a call button thingy that didn't have a functioning microphone and if they didn't hurry up, there was gonna be a problem.
As it turned out, there was in fact a problem anyway--hematuria so bad that it was actually, like. huge, fractal-looking, feathery clots that just ripped off the side of my bladder. The pain was so bad that I spent the next week locked in bed basically, because it hurt too much to sit up. But I still had to go to the allergist, so I wound up muscling through it and going--because I was NOT about to have to attempt another five day stretch without my Vistaril and Zyrtec.
That was the day my allergist said two words that made me go "WHEW:"
systemic mastocytosis.
As you can see, I've definitely been going through hell.
Depending on who you ask, SM could be considered a mild (?!) form of a leukemia-type cancer--it's your body fucking around with a specific type of white blood cell and making waaaaaaaay too many of them, and those cells dump histamine and other chemicals at such a rate that you basically are in HELL for days at a time if a flare kicks up. But my reaction was relief: we had a name. We had a reason. Basically I have a really weird hard to find blood cancer (that some sources don't consider a cancer, but there's enough of them that do that we're being aggressive about it).
"Is there something I can take?"
There was, and I just started it two weeks ago: cromolyn sodium. Eight tubes of it a day total, four times a day, for...the foreseeable future, really. But this medication keeps things under control, and according to my doctor, I might not just stop having allergic reactions to the damn air...my insulin response might get fixed. I might even lose some weight. Stabilizing the mast cells means that, if the problem inside my bladder in particular is the mast cells acting like assholes, my IC might be controlled well enough to be comfortable most of the day. My bladder has been under a level of stress that it never needed to be under, so its strength and capacity aren't great anymore (it's "FUCKING RUN" time at 6oz of pee, ffs)--meaning I'm not getting a 'get out of being a bedwetter free' card anytime soon. And the medication causes horrible diarrhea, and heart palpitations--actually it's triggering my sinus tachycardia, more accurately.
But I just took a Pokemon Go walk without having to hit my inhaler and two chewed Zyrtec at the end of it. (yeah it's that bad) I didn't have to hit ANY of my exposure meds.
IT'S SOMETHING.
I wish I didn't have to fundraise every month to help get house necessities--divorce and attempting to file for disability is rough--but it's SOMETHING.
((Note: in the event anyone wants to help, I'd rather ask and find out the policy on that before I just...GO for it, you know, even though it's rough right now.))
