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!

5 thoughts on “but are you SURE it’s not a piece of glitter?

  1. i’m only liking this post because you were able to write it.
    Is it possible for you to fire this doctor and find a new one.
    I don’t just mean go out and get a new one, I mean call them request your records, it’s your right to see them, and after you get them call up and say, you are fired.
    Doctors need to know they work for us!
    After dealing with so many doctors for so long, I would have told her to back off and treat me with respect. but me being able to do that has been a long time coming.
    And since I lost my hearing my husband goes to all my appointments with me, and he doesn’t like me doing things like that. but he has seen it before.
    Like when I had an appointment with a hip doctor and I went back to have him tell me the results of my xray and he said there was nothing there, and he was quite condsending. I said, “and why am I here?” He asked what I meant. I said, the nurse could have called me I didn’t need to see you, so I ask again, why am I here? Nothing…he walked out.
    a few weeks later I saw another doctor in the same practice and found out I had Avascular Necrosis in my hip…that means my bone was dying. I had to have a hip replacement. That first jerk treated me like a drug seeker, even though I told him I’m allergic to opioids. and just wanted to charge my insurance for an office visit.
    Whew….I didn’t know I was still so pissed at him.
    Well I fired his ass. Told him so too.
    My poor poor husband was kinda mortified.
    (avascular necrosis pain is said to be the same or worse than bone cancer pain and he thought I was fine? I could barely walk)
    My point is.
    You are not fine.
    You deserve respect.
    Doctors often treat women shitty.
    I’ve noticed I’ve been treated better when my husband is there…most of the time.
    Unfortunately, you have to be your own advocate.
    Write down everything, Take a copy of that article and anything else you can find on this. Think of exact questions you want to ask. If you can, ask someone else to go over what you are going to say before you go so you are very prepared.
    Don’t let them bully you.
    Remember, they work for YOU.
    YOU are important and deserve respect and compassion.

    rant over.
    xoxo Wendy

    Like

    • I’ll definitely bring a copy of that article to the follow-up appointment, and I agree 100% that you HAVE to be your own advocate. Especially as a woman. I can be a little too lenient with this thought process & that’s a flaw of mine, but I do always hope that I’m just catching otherwise wonderful doctors in their “off” moments. I will say, I’m going to request not to see that particular gynecologist in the future, but I think we’re just not well suited for each other.

      …Sometimes this does feel a bit like dating. Like when my new rheumatologist and I hit it off right away, that was fantastic!

      Also, I am writing a condensed version of everything that’s gone on, including what I’ve already been tested for & what’s been ruled out for the vascular doctor next month. I’m walking into that one like I’m prepped for a job interview, and I’ll channel my inner Wendy confidence. 😉

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  2. So I’ve spent the past year working in an ER and like everyone apologizes for looking up possible diagnoses themselves. Personally, I don’t see why it’s such a big deal! It actually kinda a good thing! People are trying to educate themselves!!! Yes, you have to be slightly discerning; just because webMD says cancer doesn’t mean that’s the most likely candidate!

    So I guess what I’m trying to say is nice work doing your own research and being your own advocate!

    And yes, pulmonary and cardiac blood vessels get tricky cuz they’re all mixed up together!

    Let me know if I can try to translate “Doctor-ese” into human for you!!!

    Liked by 1 person

    • Oh my gosh please just come to all my appointments with me haha. I need a translator more often than not (except for “hydronephrosis,” got that one down).

      And I’m not surprised people apologize so frequently, especially worriers like myself who think they’re somehow going to come off as insulting to the doctors. …but then I also have a big problem with downplaying my pain. It’s all hard to navigate. Hopefully more of a dialogue between doctors and patients outside the office setting (like this) will help!

      (also I ❤ you thanks for stopping by)

      Like

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