Sunday, October 22, 2017

Last Month: September 2017

Sheesh, it's almost the end of October and I still haven't done my month-in-review post for September. Can I even remember September at this point? Not really. I do remember having surgery, which I wrote about here.

Otherwise, the best I can do is show you my September 1 Second Everyday month in review video:


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See you in a few days for the October review...hopefully!

Saturday, September 30, 2017

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!

Wednesday, September 27, 2017

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.

Friday, September 8, 2017

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.

Saturday, September 2, 2017

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

Tuesday, August 1, 2017

This Month: July 2017, part 2

I picked up an awful cold and have been feeling miserable for the last ten days or so. And I've still got the kidney stones! Those other posts are still coming, I promise, but on a whim I started a new series earlier tonight: MS on TV.

The view from here:

road trip cloud vibes

the traditional road trip stop at this one Qdoba

this temperature did NOT make me happier, I assure you. it maxed out at 106.

look at this dog I call Mr. SimonPants casually leaning on his "elbow" against me in a super chill way.

a Nebraska sunset


my swimming buddies


do you like my sweet new shirt celebrating the Biebs?
(I did not buy this shirt.)

her reaction to seeing my shirt


getting my first tat

this guy is a miracle worker who saved my butt from computer doom

Mario Kart with grandma

THIS GIRL IS GOING TO PLAY HORN!!!!!!!!!!!!!
(I'm just a little excited about this.)

look at this cute family

this is how I roadtrip: podcasts and origami

new card design


under the sea!






A new thing I started doing this month:
I'm using the app 1 Second Every Day. Here is my July, minus the first 8 days:


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MS on Television: The Night Shift

This is a new series for the blog. I watch a lot of television, and I'm not ashamed to admit it. I'm happy to be living in this golden era of TV. Watching shows is actually a solid part of my health and wellness plan. Seriously! Distraction is a useful tool that I've had recommended to me by several different doctors. When my pain is really bad, it doesn't always fully work, but it can often help. I read as well, but I can't always focus my mind or my eyes the way I need to, but I can handle television.

MS comes up not as infrequently as you might expect, and quite often, there is something wrong with the way the disease is discussed. Often, this means bad or false information. I don't expect your minor storyline to be a long-form presentation on the disease in great detail, but if you're going to bring it up, at least have it be believable! And if you use your platform to show the disease in a true-to-life light, I will love you for it forever. Please watch The West Wing for some ideas on how to do it (mostly) right.

This series will highlight every time (or most times, anyway) that MS comes up on a tv show I watch. If you have any ideas for a fun MS-themed rating system I can use, let me know. Like a scale of five neurons? Or two myelin sheaths up or down? I know I have clever friends and readers - help a girl out.

First up, one of my all-time favorite genres: medical shows. I will watch literally any medical drama, even the bad ones. Most of them, I will love. NBC's The Night Shift is one that I love. It is what it is, which is a formulaic medical show, but it has heart and some great characters.

In Season 4 Episode 5, we see an army medic secretly shooting up with drugs and then we see her having some symptoms like tremors in an intense operating room situation. They are in Iraq or somewhere like that. One of the show's main characters, a doctor named TC later says to her: "Shooting up earlier, patchy numbness, weakness, and tremors How long have you had MS?"

She responds: "A while. I've been controlling it with steroids."

He says, "I can get you the best treatment." She insists that she just wants to keep doing her work, work that matters, says that she's no good to anyone laying in a hospital bed.

Later, she agrees to get treatment but then says, "The minute my treatment is done, I'm coming right back here."

This doesn't deserve a failing grade, but here are my issues with this storyline:

  • Is shooting up steroids a thing? I mean, high dose relapse steroids only come in oral and intravenous doses over a period of days, as far as I know. (Okay, I just looked it up, and it is a thing, but I don't think it's a thing typically or ever used for MS, probably because you won't be getting a high enough dose to make a difference.)
  • Also, a medical professional should know that not many MS treatments involve laying in a hospital bed. Some do, but not the majority, certainly not as a first course of action.
  • Treatment for MS isn't a thing that is one-and-done. Like, see ya! I'm going to go get rid of this disease and BRB! We wish.
  • The other symptoms make sense, but how TC adds shooting up to the list of things that made it obvious she had MS amused me.
I pride myself on diagnosing the characters on medical shows (you see a handful of the same weird/rare disease cases on every single medical show) but I did not think MS with this character, so I was surprised at TC's instant and easy diagnosis. I think the differential diagnosis would have involved a lot of other potential conditions and MS wasn't necessarily super obvious. (Other than the fact that she was a woman of a younger age, I guess. That would make MS rise to the top.)

Let me know if you see MS mentioned on a tv show and I'll add it to the series! And 

S.
with me.
I can get you the best treatment.
[Sighs] I just want to do my work.
That's all that matters.
I-I'm here now.
I'm no good to anyone in a hospital bed.
You were no 

Read more: http://www.springfieldspringfield.co.uk/view_episode_scripts.php?tv-show=the-night-shift-2014&episode=s04e05