but are you SURE it’s not a piece of glitter?

This feeling that I’ve had all week is familiar, but I don’t have a name for it.

Disappointment is close, but isn’t quite right. Perhaps a form of disappointment that’s under the umbrella of simply “tired” with a splash of “whatever” to it.

I’m on a break, basically. I have to pause for a little bit.

I know this must sound wildly unhealthy but I assure you, this is something I need to do to preserve what’s left of my sanity. I had my two appointments, one with a nephrologist and one with my gynecologist. They were…not exactly motivating.

The nephrologist had some theories but wants me to see a vascular specialist before trying anything himself. He wasn’t opposed to my theory, which I’ve been withholding from you because I’m probably wrong and I hate being wrong, but will now share: ureteral endometriosis. Basically, endometriosis, but the affected area is your ureter as well as your cervix and all of that angry & misplaced tissue can send your kidney into hydronephrosis. It can also cause recurrent UTIs. A very informative (and science heavy) article about this peculiar variety of endometriosis can be found here.

As per the nephrologist’s suggestion, I brought up ureteral endometriosis (UE for writing’s sake) at my gynecologist appointment several days later. My gynecologist’s office makes me very nervous, by the way. Not for the reasons you’d think. I want to give my OBGYN the benefit of the doubt that she’s actually lovely and she just uses up her patience in her other appointments, because I always feel like I’m bothering her by having any inconvenient problems or questions. Before even bringing up the UE, I asked about something else which led to her asking “could it be [blank] ? are you sure it isn’t [blank]?” Without getting into major T.M.I. territory – these were really, really obvious questions. Imagine going to a dermatologist for a weird mole you’ve been keeping an eye on for a few months and having the dermatologist ask “are you sure it’s not a piece of glitter? …and it’s not a dot you drew on yourself by accident with marker?”

Eventually I got around to bringing up UE, simply explaining that quite a few of the symptoms were in line with what I’ve been experiencing. She hadn’t heard of endometriosis of the ureter before…which, I swear to God, was fine with me. Was I a little surprised? Alright, yes, a little…but it is a rare condition and not even a doctor can know about every condition in their realm of study. Right? It’s fine? It’s fine.

I was ready to move past that, but damn if she didn’t start right in with “well I don’t know if they’ll want to just do surgery for that,” after I had not brought up any interest in surgery whatsoever. I ended up backpedaling: “oh no, no, that’s alright, I’m really just looking to talk to someone about it.” Meanwhile, the look she’s giving me is making it very clear that she will not be the one who has this discussion with me. I’m told to set up an appointment for the end of next month with a different doctor in the same office. The “surgeon,” I guess. The best part of this whole visit was the receptionist asking why I was setting up an appointment to see the surgeon as I was signing out. When I told her, she said…I kid you not…

“Oh…I don’t know if Dr. [Surgeon Guy] deals with that. That sounds like urology. Have you thought about seeing a urologist?”

…ma’am.

Anyway, I saw myself out and went across the street to CVS to look at Valentine’s Day cards, where I ended up quietly raging/soft crying while wandering the entire store for 45 minutes. Sometimes you need to allow yourself that quiet rage moment, let a few tears out, and heck, buy a face mask if this is all happening in a CVS. Side note: I bought one face mask and walked out with probably $50 in coupons. Incredible.

So. I’m taking a little break. Not from the blog, but from the pursuit. I’m going to continue my cleanse of all alcohol, keep track of any pain flares, and take things one day at a time. I’m keeping my two February appointments with these two new doctors, but I’m keeping my expectations at the lowest of lows. It all sounds so pessimistic, doesn’t it? I’m actually happy, believe it or not. The year is just beginning and there’s so much I want to do.

Also, I’m perfectly content with not being a comment-heavy blog, but if anyone ever has questions or anything you’d like to share, please feel free! Or, if you’d like to suggest a topic for a future post (& I do plan on writing about last year’s wacky hospitalization, misdiagnosis and $48,000 hospital bill very soon) I’m open to that, as well.

Enjoy your three-day weekend if you have one!