Ooph: A Surgery Update

A quick health update for y'all. Since I tend to ramble, I'll start with the tl;dr version: On Monday, I had surgery. I lost some big ol' ovarian cysts and 1.5 ovaries. I'm tickled for some reason by the name of this surgery: oophorectomy. Ooph! (Oops, I've already starting rambling with unimportant info in this summary paragraph!) I'm in pain and feel generally not great (nauseous). The MS has been acting up a little bit in response.

Now the rambling Kayla version for those interested. This saga started in early June when I went to the ER and found out I had kidney stones and also some kind of pelvic mass.  I saw a urologist who was eager to get to the bottom of my obvious MS bladder dysfunction before even dealing with kidney stones. He also urged me to see a gyno stat because the pelvic mass was compressing my ureter which was dilating the kidney and impacting the kidney stone situation. But it took a while to get into the one he recommended. 

While waiting to get into the Gyno, I had a delightful test with the Uro called a Urodynamics Study that I still plan to write about on here someday. After that test, I was diagnosed as being officially bad at peeing. (Or detrusor sphincter dysynergia if you prefer the medical term.) We're going to revisit this soon and decide whether or not to try drugs or start self-cathing.

On Day 59 of Life With Kidney Stones, one of the three stones evacuated the premises. Two still remain. Next week will mark week 17. SEVENTEEN WEEKS of peeing into a strainer and having regular bouts of back pain. 

Eventually, I got in to see the gyno and had a few special ultrasounds. He believed I had what are often called chocolate cysts, or endometriomas (from endometriosis, something I didn't know I had) and recommended surgery. He said they were around the size of grapefruits. (!) Surgery confirmed the endometriosis, so cool, I've got another thing.

Since I'm not sharing surgery pics, here is a picture my surgeon drew.
"These ovaries are kind of big, but your ovaries are really big."

The surgeon told my mom that it was quite a mess in there. (I have pictures from the surgery which are AWESOME and I'd love to share them with you but I know that two of my readers, in particular, don't want to see them, so just take my word for how cool these pictures are. I wish I had more, or better yet a video of the whole surgery!) I knew going in that there was a fair chance that he would have to remove at least some of my ovaries, though the hope was to not have to fully get rid of both to keep me out of menopause. In the end, 1.5 ovaries had to go, along with the cysts. I could still potentially enter menopause now or soon or at least enter it much earlier than I would have otherwise. And with some ovary remaining, there's a chance the cysts could return.

Pre-surgery

Post-surgery

Waking up from surgery was fine. Much smoother than the last time I came out of anesthesia. But my MS quickly decided it wasn't super pleased about the whole experience. Shortly after coming out of the recovery room, I had to pee. Like, I REALLY had to pee. But then, I could not pee. I kept trying and kept trying and finally got out a tiny trickle. I still REALLY had to pee so I kept trying and kept trying and finally got out another little trickle. At this point, I gave up but still really had to pee.

Then, shortly before they were going to unhook the IV and let me leave, the DREADED ITCH started. It was a solid 45 minutes of total agony. 

I came home, was eventually able to pee a little bit more but basically, my bladder has remained in revolt ever since. I'm not emptying fully which means I pretty much have to pee continuously. Getting up to pee is the last thing I want to do, though, because moving hurts. I have three incisions, one of which still hurts A LOT when I move or bend in any way. Overall, the pain does seem to be getting a little better, though. I've stopped taking drugs, but they were definitely helpful for those first few days. 

post-surgery pics of nephew and niece are way better than pain meds!

MS on Television: This is Us

This is Us is one of my favorite shows. It's one that consistently has me reaching for the kleenex, and I love shows that make me cry. On the first episode of the new season, we learn that the mother of one of the characters has MS. A quick Googling tells me that we actually learned that fact last season. We have definitely not met this character and I don't know if we will. I probably forgot because the character and storyline in question are related to the only character on the show I don't really care about: Kevin. Does anyone actually like Kevin? I felt the tiniest smidge of empathy for him maybe once or twice during the first season, but mostly he drives me crazy. (To be fair, he definitely made me cry extra hard in one pivotal emotional scene towards the end of the first season but at the same time made me annoyed and upset.)

Onto the MS. Kevin's girlfriend Sophie's mom has MS. Sophie has to cancel her trip to see Kevin on his birthday.

Sophie: It's my mom. She had a really bad morning and I just couldn't leave her.

Kevin: Of course not...how 'bout now, though? She good? She good now?

Sophie: She has MS. She's never good. I'm sorry.


Later, Kevin's sister Kate asks where Sophie is.

Kevin: Canceled.

Kate: MS?

Kevin: Yeah.


And that's it. The "She has MS. She's never good." line made me laugh because there's definitely some truth to that, though I could also see why some people might be offended by that line.

Will this storyline go anywhere? I just unintentionally saw a spoiler that makes me think we might actually meet Sophie's mom at some point this season. So, stay tuned maybe probably for another post. And if you don't already watch this show, it is worth the hype. You must start at the beginning, though.

MS on Television: The Night Shift, part 2

I expected the MS storyline on The Night Shift to fizzle away and I didn't think we'd ever see the character again, but she's back. And the MS storyline is as ridiculous as ever, if not more so.

When we left off, the doc was off for "treatment" and said that as soon as her treatment was done, she'd be back on the ground in Syria. Her "treatment" now apparently "done," she shows up in Texas instead. Her main purpose is to be a source of conflict as a love interest for a main character doc who is still in love with another main character doc. So I get that this MS storyline is just a means to that end, but come on! You guys can do better.

I waited on bated breath to see if her MS or her mysterious treatment would come up at all. She looked good  (Did I just pull the dreaded "but you look so good!"??? Sorry, my bad, I should know better.), not having any of the obvious physical signs she was showing before. In fact, she was training people on combat medicine and running through an actual active shooter situation. The "treatment" must have worked like a charm!

running while loaded down with gear while an active shooter is on the loose
#TakeThatMS

I was surprised when her health did come up. Later in the episode, she apologizes to the main character doc who is the ex of her current love interest, saying "Sorry, I'm peevish these days. My treatments aren't going well." [This character has never been anything other than peevish, as far as I'm concerned.]

Other doc asks, "Treatments?

She says, "I have MS. TC didn't tell you?"

"Uh, no. He didn't. Do you mind me asking what kind of medications you're taking?"

Then another doc interrupts them and I yell at the TV because I also want to know the answer to that question!

But later, they talk again. We never learn what her mysterious treatment is or exactly why/how it is not going well. (Again, she seems to be functioning quite well, certainly better than before!)

"So does TC know the treatment's not working?"

"Not the extent, but there's nothing he could do. God knows he'd try."

The episode ends with her going back to do even more dangerous medicine on the ground in Syria. Will we ever see her again? I'd bet no, but I didn't think we'd see her in this episode.

My problems with this episode:

-The MS is just the means to a stupid end. It has no point (there's enough stupid drama and conflict in this love storyline...like the fact that she's technically still married to someone else!) but if MS is going to be used, at least use it responsibly! Medical dramas, especially, have something of a responsibility when portraying real life diseases. Some of them take this responsibility more seriously than others. MS has come up at least once on all of the medical dramas and while it rarely leaves me fully satisfied, it usually doesn't piss me off as much as this one does. And a non-medical show (The West Wing) is still the gold standard, as far as I'm concerned, for an accurate and responsible portrayal of MS.

-It's been maybe a few weeks! So how does she know the treatment isn't working? She seems to be doing significantly better physically than she was pre-treatment, so she's probably not having an exacerbation. I've been told that it can take months for MS drugs to really take effect. I've stopped MS drugs after a few months because they clearly weren't working but this clearly has not been even that long.

-I've taken flak for calling into question whether someone with MS should be president in relation to The West Wing (given the current political reality, I SO TAKE THAT BACK) but I'm REALLY calling into question whether someone with the specific challenges this fictional MS patient is having doing the kind of medicine she is doing. She's in the operating room on the front line in Syria and she can't really feel or control her fingers. She is putting other lives at risk in a stupid way. There are ways for her to contribute within the realm of medicine despite the MS.

This Month: August 2017

Sigh. I neglected this blog all month long. I still have all kinds of plans for this space and I've begun slowly building a new home for this content, but the MS Muse keeps getting put on the back burner. I'll try to do better this month. I have four drafts of posts that are partially done, so I just need to commit to one and see it through!

This month:

• I passed a kidney stone! It was one of the smaller ones, but on Day 59, at least one of these buggers got evicted. Doctor stuff continues in relation to this issue.

• I went through YET ANOTHER unexpected insurance nightmare in relation to my Lyrica. It resulted in me actually sobbing in the bathroom at Walgreens, so that was special. Usually, when insurance won't cover the drug for whatever reason, I buy a few days worth out of pocket until the mess is sorted. I generally can't really afford it but I truly cannot make it without these drugs so I find a way to buy at least a few pills. (I probably could make it without the drugs, just in a lot of pain, but the WITHDRAWAL from this drug is the worst experience I've EVER encountered, and it's one I cannot do again. I would have to be hospitalized.) But this time, they refused to let me buy any out of pocket, period. The pharmacist explained why, something about it being a controlled substance and it would mean the insurance would never cover it after I'd bought some out of pocket or some such nonsense. I don't know if the rules have changed since last time or what. I had just barely started withdrawal but I have a guy on my MS team who fights hard on my behalf and he got it worked out just in the nick of time. So I'm back on it and the effects of the short-term withdrawal are behind me.

• I played a symphony concert with a major fireworks mishap. There were some minor injuries in the violin section but it could have been a massive disaster. It was quite scary.

The view from here

rehearsing on a pontoon in the middle of a lake!

that's me floating! perfect day.

I'm very disturbed that there was a legitimate need to put this up in the exam room at my Neuro's office.

I find it hilarious that they put little star stickers on my bag o' Tysabri.
But I'll take a gold star whenever I can get it! 

I'm friends with some tree-huggers. ;-)

Here is my August One Second Every Day compilation, though I missed a few days:

A post shared by Kayla (@nelsonkl23) on Aug 31, 2017 at 6:48pm PDT