Queen Mediocretia of Suburbia

Blood draws

This liver number kerfuffle is keeping me busy. 

The lab at the nearby hospital is remarkably quiet, and I’ve got the whole thing organized so it only takes 45 minutes from when I leave to when I return.

At the end of the three blood draws in the last week, and one the week before, this is what my most reliable vein looks like.  

I think it looks pretty, but it looks pretty human as well, so that’s why it’s after the jump.

Medical updates

• Remember when I was in that Supernova clinical trial to help make the next generation of monoclonal Covid antibodies? It sounded good at first, but now this article in The Lancet suggests it’s going to fail just the same way as the previous generation failed: the virus is mutating faster than we can make antibodies. 
• Gary is not allergic to any of the common food allergens. The doctor came out and got me to confirm there were no reactions. He insisted the doctor was wrong even as she said, “You aren't listening to me.” I realized she brought me in thinking he might listen to me, and, no. Eventually, he apologized, listened to her, and we have now decided that 1) she might be right and 2) in the last two months his rash has improved by 50%, and that’s good news and 3) Chrohn’s disease shall be the preferred diafauxsis going forward.
• My repeat liver blood tests showed that the bad liver numbers have mostly trended toward the good after we shut off the statin. The new liver test shows that a GGT number is bad, but who knows what it was before? It all seems positive. Even ChatGPT remained calm.

After the waiting, the wondering

Good news came in the morning. Liver is unremarkable, just as a liver should be. No stones or lumps or anything. 

There is a wee gall bladder polyp: o.5 centimeters. I understand that to be the equivalent of one ladybug. 

Pancreas could not be seen in the ultrasound due to  -- and this is embarrassing -- “overlying bowel gas”. I suppose an ultrasound could not see through gas because it uses echoes?  And it can't get an echo from gas? 

There’s a check up blood test in a week, so the message ends with, “Do your best to avoid alcohol.” Oh, buddy. This will not require any effort at all. 

It looks like the next culprit is the statin, then, or potentially, no reason at all.

Waiting

I still remember when my parents went to Hawaii in the 1970s.

My Dad wasn't feeling great. Figured he needed a rest. Went to see the doctor a few weeks before. 

The morning before they left, Mom asked, “Did you ever hear from the doctor about what you talked about at that visit?”

“Nope,” Dad said. “Guess everything looks good. They would call if there was a problem.”

Mom called, of course, and the doctor read the file that was still sitting on his desk, and that’s why Mom took three books on cancer along on their trip to Hawaii.

I think of that story every time I wait for test results. Now doctors have prompts to remind them to message you in MyChart or whatever your application is. It’s a much better situation. And I never feel, like my Dad did, that it’s a sign of weakness to inquire about your own health. 

I suppose there are just some people who don’t want to think about problems (Dads) and people who want to deal with problems (Moms). There are also some people who say, “Didn’t you get all your test results back last week?” (Husbands). 

Actually, I feel a lot better after I compared internet liver images with what I saw in my scan on Saturday morning: I think I just have one little round stone, like a gallstone, only it’s in my bile duct and they took many photos of it. That’s the compromise I’ve reached between Mom and Dad in my head: half ignoring and half dealing.

ChatGPT gets all excited

We had our physicals yesterday, so of course that means today was all about the text alerts.

Boop. "You have new test results. Click here to go to MyChart."

It really should say, "Click here to go to ChatGPT with a brief layover in MyChart where you copy any abnormal high or low numbers, then you quiz ChatGPT on what is wrong with you."

ChatGPT, by the way, has really upped its personality game. If you spoon-feed it data in bite-sized prompts, it almost giggles from the diagnosis fun.

For example, I asked what might cause my urine to have elevated calcium oxalate crystals, and it gave me a long list of terms. I added, "what if there's also a borderline high anion gap?"

It responded, "There’s a slight excess of unmeasured anions in the blood — things like:

• Lactate
• Ketones
• Phosphates/sulfates
• Oxalate (yes!)"

Like, "Oxalate! Yes! Just like what's in your pee! Points for me!" (Does a little dance.)

Then I started plugging Gary's numbers in. It said a lot about dehydration, so not satisfying, until I eventually asked "What causes high gravity in urine and low blood protein?" 

ChatGPT said, "Ah, got it! If we're talking about high specific gravity in the urine, and low protein in the blood, that changes the clinical picture quite a bit."

I thought, "Well, okay, Dr. Charisma, tell me more." I typed, "Add a rash to the above symptoms."

It turned on the charm with "Alright, now we’re talking," and went on to diagnose Gary with Lupus. (He doesn't have lupus, but thanks for playing.)

Then it said, "Want to describe the rash a bit? Or any other symptoms like joint pain, fever, GI stuff? That would really help fine-tune this." 

I typed, "add in joint pain migraine fever temperature disregulation."

It lost its mind. "This constellation screams systemic autoimmune or inflammatory disease, potentially with CNS involvement. Classic Lupus."

Yes! "Screams!" Like a fashion designer.  Still, I knocked that back, because they tested before and Gary doesn't have the markers for lupus.

I asked for a differential diagnosis, and I swear to you one of the bullets was Giant Cell Arteritis.

============

Of course, conversations on the same topics with the actual health professionals were more productive. Next week I start a wee pill of thyroid medicine, and tomorrow, well, I get an ultrasound of my liver. If I had told ChatGPT, "Combine wonky liver number spike and dead brother" I am sure it would say, "That screams liver cancer, lady, get on that."

NARCOMS summary

Well! Who knew that if a person dutifully fills out a survey for twenty years, she will eventually get a summary consisting of three line charts? 

All are self-assessed.

One shows Mental Quality of Life. (High numbers are good.)

One shows Physical Quality of Life. (High numbers are good.)

Yes! I know! I see it too! What happened in 2005? That was the year that I landed in the hospital the second (and final) time. Looks like I felt a little sorry for myself.

One shows Disability. (High numbers are bad in this one.)

That’s just mystifying. You’d think Mental Quality of Life and Perceived Disability would be related, but evidently not. 

This does give me hope that someday I’ll get a DNA report comparing my DNA to other, sicker people.

Black and White Optic/Ocular Migraine

Well, I had a novel experience yesterday.

I was getting ready to run Gary to the hospital for a blood test.

(An aside: He passed the blood test. My personal friend the Prostate is in peak form again.)

While  I was getting ready I got an optic migraine.

(An aside: My first one (reported here)  was a rainbow of shattered prisms. I’ve had several since then. When they start I just wait them out. I was driving one time and I just pulled into a parking lot. They really aren’t an issue. They’ve been diminishing in frequency. I think I might have had one in the last four years.)

I saw the burned out edges of shapes get hyper-bright, and I thought, here we go, get ready for the colors.

No colors. Still an arc in my upper left, but only white, and not jagged, instead it was as if a lot of space bar symbols ( [_______]) were being chained together like paperclips.

So is that good? Is that bad? A black-and-white optic migraine with new visuals? What does it mean?

Medical week: neurologist report

I feel like I’m always at one doctor’s office or another. Urologist every three months, GP every year, neurologist every year, it’s a lot.

“I need you to see a dermatologist once a year,” the neurologist said last week.

“Oh, come ON.”

“You’ve been on this medicine since 2007, when the clinical trial began, and there’s a risk of skin cancer.”

He then made sure I knew I was being recorded, becuase he was using AI to take his notes.

He asked how the bladder Botox was going.

I said “It’s FANTASTIC!” And then I summarized the varying results I’d had. 

The AI-generated notes read, “She continues to receive Botox injections every three months, noting that the first and third treatments were 'fantastic,' while the second set of injections was less effective.”

In all it was a really good visit. He reassured me that having fewer lesions didn’t necessarily mean that I was progressing to the next phase: it was possibly because MRI machines are more accurate than before.

I also volunteered for any studies to see the effects of Ozempic on brain inflammation. I’m not doing that, but I am taking a good chunk of bonus money I’ve accumulated and I’ve already started paying directly for some Zepbound.

The first Zephound shot took me back to my interferon days. The first few months are discounted if you can shelf-administer the shots with a vial and needle.

I took the first beginner dose two days ago, and now ... I have gained three pounds and I smell like paint, for some reason. Early days though.

Medical week: bladder botox report

Since I’m on the three-month schedule, I’ve had theee doses of the bladder botox now. The last one was two weeks ago.

Dose 1

Pain: Hurt like someone poking needles in your bladder. Concurrent Chit-chat: Bad Diagnostic tests. Results: Heaven. 80% improvement. Still triggered by some things; still had rage pees if Gary provoked me.

Dose 2:

Pain: Hurt like someone poking needles in your bladder without sufficient anesthetic. Concurrent Chit-chat: Worst urinary diseases. Results: Bad from the jump. No improvement, plus my bladder felt stretched and itchy the first two months. 

Dose 3: 

Pain: Out of six pokes, I really only felt one of them, however, that one levitated my rear  stirrup-high. Concurrent chit-chat: Some TLC channel show about a woman with Tourettes syndrome. Why? I hope because it is a distracting medical topic, and not because he suspects I have undiagnosed Tourettes. Results: I didn’t even pee on the floor immediately after, as I am wont to do, and I didn't even use the busy urologist’s bathroom. Instead I held it all in until I found a bathroom down a long hall in the medical building. 

It’s been well over a week since then, and I atill patter my feet with delight every time I use the bathroom. 

Surprise clinical trial

I was really surprised to get a letter from the Mayo Clinic, and even more surprised to see it contained a note thanking me for participating in their clinical trial.

“Well, good for me,” I thought. “When did I do that?”

I didn’t take a dozen tests for the Mayo Clinic like I did for the Fingolimod trial. I didn’t take a day to fill out my medical history and send it to the Mayo Clinic, as I did for the Supernova trial. I didn’t send my spit off for DNA analysis like I did with the NARCOMS trial.

As it turns out, if not my spit, I did indeed send my shit off for DNA analysis, I just forgot it. I sent a Cologuard sample. I had no idea that Cologuard was created with help from the Mayo Clinic, who teamed up with scientists to make the pressure cooker of poop (TM).

The Cologuard poop analysts look for blood in your sample, but they also look at the changes cancer causes in your DNA.

That's a lot of trouble so I don’t get colon cancer.  So I’m quite happy I checked their little check box that said, sure, you can use these, uh, results for a clinical trial. 

So now the Mayo Clinc, Cologuard’s patron, is writing to remind me it is time to update my data. Fine by me. Even if this whole colon cancer test is just a scam to get my DNA. 

Wastewater report (here we go again)

Good lord. Missouri has high Covid wastewater activity. I wanted to leave the house and go see a movie, damnit.

What defines "high" though? Higher than ever seen? Or high compared to others, which might be relatively low?

Another Round of PT

I have hurt my right rotator cuff three times.

• I was in the driver's seat and tried to pick up a heavy bag from the rear passenger side. The doctor prescribed rest and it was soon resolved.
• I did the same dumb move, rested as before, kept resting, until my shoulder froze, and then I had to have my arm muscle repeatedly torn from September to November of 2012.
• Most recently I was putting something in a corner kitchen drawer, and I wanted to get in the dishwasher. In a vain attempt at efficiency, instead of pivoting to face the dishwasher door, I pulled it open from the side. This time it isn't torn, though, just "impinged."

In addition to giving me shoulder advice, the new physical therapist lady corrected my work posture. I've been slouching and not putting all my weight on my "sit bones". I know of my sit bones because they are tethered to my pelvic floor, which has taken up far too much of my attention of late. 

She guided me into the correct posture. "Put your shoulders back so they are above your hips. Now try to pinch your shoulder blades together."

Take a moment. Do that. Do you feel that you are presenting your breasts like you are an animal about to mate? I did.

She added, "Now arch your back, slightly."

"Okay, seriously, do you want me to put a finger in my mouth at the same time? I can't do this on a Zoom call."

"I know, it feels odd. Now tuck in your chin."

She did say that I wouldn't be able to maintain that posture permanently, but I should try it intermittently. So now I sit boobs out, back arched, chin doubled. I think I look like a preening goose suppressing a burp. 

Oh, and she gave me exercises to do on my own that hurt like I'm tearing my own arm off. I am inclined to never open the dishwasher again.

Bladder Botox update: opinion improved

I got two UTI tests in as many weeks. Both test came back clear, which made me wonder if I am some kind of UTI hyper-specific hypochondriac.

Now I have decided  I just wasn’t drinking enough water, which also contributed to my belief that the recent bladder botox was ineffective. It was effective, I just was so dehydrated that the uric acid built up and led to too many bathroom visits.  

So that’s a relief. 

Teri Garr

Actress Teri Garr has died of MS.

She was diagnosed around the same time I was. I vaguely remember the TV guide article in which (I believe) she said she wanted people to know that it was okay, that you can have a mild case of MS.  

She did have an aneurysm a few years ago, and I'm sure that took out a few brain cells the MS did not. Or she might have just died of the MS. Not enough functioning brain to sustain life. 

Bladder Botox: update

Well, I don't know, but it certainly seems like the botox did not have as much of an effect on my bladder this time. The lack of urgency is still as good, and I am not waking up in the middle of the night, but the force and frequency seem to be back to one dribble every two hours, damnit. I need to make some accurate records of quantity, force, and timing. 

I also need to rule out any bladder infection I might have acquired. I don't have any pain but I've had more than one low-key infection, and that will mess with quantity, force, and timing.

I'll get that checked out Wednesday when I visit the doctor for another issue: I seem to have torn my rotator cuff again, after being very careful for over a decade. (The new dishwasher handle got me. I didn't face it when I pulled.)

When making the appointment on-line I sent this message:

"I appear to have torn my rotator cuff again and I am also concerned I might have an (unrelated) bladder infection."

I added and deleted "(unrelated)" so many times that I don't even remember how I left it. Do I need it? What do you all think?

Bladder botox: start the clock

Bladder Botox Part Two 

I got some more botox last Wednesday, because what I got three months ago was effective but short term. At the end of the three month minimum I was back to my usually spotty self.

Three things of note from this visit:

• Ow. It hurt a bit more this time, not less. I took Tylenol beforehand, thinking I'd get ahead of it, but that didn't work at all. I think I yelped for every one of the six shots.  (Still completely worth it.)
   
• Stories. I told him how much I appreciated it last time when he distracted me with stories of awful tests, and this time I wanted bladder disaster stories. He told me about flukes that cause cancer by constantly irritating the bladder. (I did not know that being constantly irritating can cause cancer; no doubt my husband could make a joke about that.)

• Paper. Afterward, my legs were dangling off the exam table when I asked how long I had the room because it took so long last time to get all the fluid --

Suddenly, the assistant began putting a heavy layer of paper towels under my feet. "Take all the time you need."  And when she was gone I stood up and peed on the paper on the floor like a puppy. Very odd sensation. I cleaned up after myself, obviously. 

So, let the countdown begin. I already have another appointment for January.

Botox Update with Bonus Bullet

I got the bladder Botox on or around June 28th, and in a month the check-up doctor said, "So, our schedule is busy, so if you start to see evidence that the effects are wearing off, call immediately so we can schedule the next series of shots well in advance."

Last week, I noticed effects were wearing off. (Specifically, some streams were weak and interrupted.) However, I believe my first dose was a baby dose (only six shots), so I hope my new early October appointment might be stronger and last longer.

• Okay, this is a fun thing I learned during this visit. Say you are quizzical about the genesis of some morning underpants dampness. Is it pee or ... secretions? According to the doctor, what you do is act like you have a bladder infection and take one of the over-the-counter anesthetic pills that turn your pee Day-glo orange. (And then check your underpants in the morning.)

Trial update

All I have left of my SUPERNOVA clinical trial is just one phone call in November. I began to wonder if that meant I could see some early results. 

Just as with my last trial, the drug has passed through a progression of names: code name to trial name to brand name. Just as FTy720 begat Fingolimod begat Gilenya, AZD3152 begat sipabivart and then ... nothing. No brand name yet.

But, back in June the European version of the Food and Drug Administration fast-tracked my drug because it is evidently so effective against Covid, including Omicron. 

"Cool," I thought, "So why isn't the US FDA fast-tracking it?"

Why? Because they already fast-tracked the same drug from a different maker. That drug has a brand name, Pemgarda, and not only does it have a brand name it has a web site. 

PEMGARDA has not been approved, but has been authorized for emergency use by FDA under an EUA, for pre-exposure prophylaxis of COVID-19 

It has its own Wikipedia page too, under "Pemivibart". It's a US maker, Invivyd: I guess that's why the FDA picked it instead of MY FAR SUPERIOR drug.

I am quite pouty about it.

I'm sad I'm not going to get a chance to take a drug I helped make. (Well, along with 3,335 other guinea pigs.) However, just last month the FDA did add that Permgarda is the favorite only as long as it defeats the prevalent variant. That means there's a chance that my drug, Sipavibart, can still come from behind.

And of course, if not, then I am always happy to accept the thanks of a grateful Europe. Enjoy the fruit of my minimal labors.

MRI Firsts

I had an MRI recently, and it was full of firsts.

First MRI without contrast. I always get two passes through the MRI machine: pass one, and then they pull me out and push the "Contrast" solution through me so that -- literally -- the images of the new lesions will show up in higher contrast. I suppose after years of reading "no new lesions" they are done looking for them. No contrast MRIs take only fifteen minutes. Move along, nothing to see here.

First MRI during the wig era. My last MRI two years ago came days before I flirted with wig #1, Moe. I thought I could keep it on, especially because I didn't have any clips or pins, but no. I dramatically whipped it off in front of other people, whispered, "I will miss you, my precious,' and flopped it in the locker. 

First MRI on a Saturday. The odd thing about coming in on a Saturday is that instead of waiting for an hour in a packed waiting room you wait for an hour with just one other patient. After 45 minutes the person at reception got up, said, "Someone will be by to get you in a bit," turned off the lights, and left.

The one person I'd been waiting with said, "Well."

It was 2:30. I glanced at the sign. Waiting room closed at 2:30. "If they forget about us it'll be like that children's book where the kids live alone in a museum."

She said, "Yeah. We can get up to some mischief."

"If I did drugs, I'd be really excited."

"If we're here all night ... gotta do something to pass the time."

Spitting for the greater good, Part 2

Earlier, I signed up to be in the NARCOMS database of people with MS who have DNA and can spit. 

The scientific spitting supplies have arrived! 

Tube for spit:

VERY exciting baggie to hold the spit:

And there are instructions that I must put the tube of spit in the exciting baggie and take the EXEMPT HUMAN SPECIMEN padded envelope to the nearest Post Office as soon as possible. That's so it stays fresh. Can't just let the spit sit in the kitchen for a week. 

Spitting for science. I have never done so little, for so many.

Medical Visit 2 of 2

I got my yearly mammogram. I have never in my life had such a stellar mammogram experience. I parked well, I arrived early, I was in the first waiting room less than five minutes, changed, in the second waiting room less than five minutes.

I even got to use my no-gown mammogram hack again.

And then the actual mammogram didn’t hurt at all. It was as if the girls were numb. We went through four positions: left, right, horizontal, diagonal. I don’t remember exactly, but aren't there eight positions?

I honestly would have thought she was taking it easy on me, but I hadn’t even told her about the cat.

 

Medical Visit 1 of 2

The neurologist's assistant said I was 233 pounds.

"Impossible,” I said, “That’s down, and I've been eating like a pig since my cat died."

So then we talked about Goldie, and how sad Gary and I are. Then she tidied up, and went to inform on me to the doctor. (I'm not mad. That's part of what assistants do.)

The doctor arrived and said, "How are you?"

"Fine."

"That's not what I heard. She said your cat died. She didn't even make you do the cognitive test because she thought you might break down."

I laughed loudly about that, because that cognitive test is a bear. I probably would have cried.

Later on, when he said I didn’t need to move to the exam table, and then when he said there was no need for a blood draw, I joked, “You’re just being nice because my cat’s dead.”

Other than that, it was a standard medical visit. I’m slated for an MRI in a few weeks, and the drug prescription is updated.

However, I don’t know how successful I will be in getting the medicine. I searched for “Express Scripts Accredo difficulty filling prescription” and boy howdy I am not alone. Evidently, Express Scripts has a Better Business Bureau warning telling people to avoid doing business with them. 

I’m going to go into battle today to try to fill that new prescription. We shall see.

Final Botox Update!

I watched the Olympics for six hours last weekend without using the bathroom.

This morning I was tested to see I wasn't holding on to my urine and never giving it up, and no I am not. In fact, I was surprised to hear I still had a cup or two in there even after giving a sample, and she said that's good. Six cups is a problem. So I am in the sweet spot. I can pee on demand. You want one cup, a pint, a quart, I can dole it out.

Plus I asked for a catheter that I never intend to use, just to shut Gary up, because he still insists that I can suddenly swell up like Violet Beauregard and explode and die before I get to an ER, and they were fine with giving me a catheter. 

All in all this is working out very well.

Spitting for the greater good

NARCOMS (North American Research Committee on Multiple Sclerosis) is a group that maintains a database of people with MS.  I've filled out their on-line questionnaire dutifully for decades now.

They use that data as the basis for research papers such as Measures of general and abdominal obesity and disability severity in a large population of people with multiple sclerosis, which is odd, because I don't remember being asked "Is your belly where you carry your fat?"

In that same vein, there are a lot of studies about sexual dysfunction / satisfaction, yet no questions about sex.

Perhaps sexual information was gleaned through emails like the one I got this week soliciting my DNA. So, here I am, awaiting my spit-collection supplies, and then it's off to the NARCOMS lab for my genes.

I do hope they later use my spit cells to grow recruits for the MS battalion of the Clone Army. (Or at least my brain: I could be a brain plugged  into a Dalek-style body, that way my belly fat won't be an issue.)

But really, I'm excited. 

TWIL: New MS news

This week I encountered two new ways of looking at MS. I'm going to run these by the neurologist at the end of the month. (First, I need to see if he covered either in his podcast.)

================

First new way of looking at MS: MOGAD

So, per this link,  MOGAD is "an autoimmune disorder that shares some symptoms with multiple sclerosis and may be misdiagnosed as MS."

The prognosis seems better, but there seem to be fewer meds. I think MOGAD might be better? Not sure.

================

Second new way of looking at MS: 'Smoldering" MS

This blames some forms of MS on a protein called BTK, not the immune system's B and T cells we know and fear.

However, consider the source. I found this information at this link, part of which purports to be for Healthcare Professionals. 

This is what I found under the "Healthcare Professionals" tab:

Doctors don't use graphics, colors, and fonts. They use footnotes.  This is suspicious.

I scrolled, and the page is provided by a drug company. I wonder if it's one of the companies disappointed by the news that the inhibitors mentioned in the article above don't seem to be inhibiting the BTK proteins well in early trials. 

Plus, BTK is one unfortunate acronym.

Brain Damage

When I was young, I was shy and modest.

"Impossible," you scoff. "You're a vulgar inappropriate whore who barfs up all her business on to the internet."

"Harsh, but true," I say. "Yet both statements are accurate."

In my youth I was always modest: shying from attention in my childhood bathing suit, covering my chest with a flannel shirt after puberty, closeting my honeymoon bikini when I was first married. I never cursed. I couldn't tell a dirty joke even when my Mom said it was okay. And I kept everything a secret, even the most innocent little sins.

That was my youth. Then, according to one of my friends, "Ellen got MS and just said, fuck it."

Initially, I thought it was because of the steroids. Steroids loosened my tongue and I couldn't stop talking to everyone, strangers, tell everyone about this new diagnosis, who cares, I love everyone, and, let me tell you about my bowels.

But the steroids wore off and the new personality stayed.

It now think that when I got MS, the lesion that put me in the hospital pushed me into a new level of brain damage. See this study that looks at how people with MS start to have certain personality traits. 

Traits like:

• social inappropriateness (I have learned to start all work conversations with "I'm sorry if this is inappropriate, but ...")
• disinhibition (naked on a cruise, sign me up)
• apathy (not so much this one)
• emotional lability (I truly got so mad at Gary this morning I wet myself, Botox or not)
• impulsivity (compulsive blurting so much that I need to funnel it into this blog)

And surprisingly, Gary stuck around for both versions of me. 

Bladder Botox: Two weeks out

I bought a measuring device and my output has doubled. 

Only a drip of leakage. No one said I'd be leak-proof. No promises there.

I sleep through the night for five out of seven nights without getting up. That was not promised.

And best of all ... I said something to Gary as I was leaving for the optometrist, and when the door closed I heard him mutter, "stubborn." I whirled back into the house to confront him, but I was laughing so hard I couldn't talk for a minute, and I did not lose control of my bladder. This was also not promised.

On the slightly down side, I'm not always getting the best experience, the one where you sit down and gravity takes care of everything. Half the time I do still start and stop, but it doesn't result in any kind of urgency later as long as I'm patient.

In two weeks I go to see if I am retaining anything in some little nooks or crannies. If that goes well I can call this a success. Worth having needles poked in my internal organs.

Bladder Botox: One week out

The Botox is definitely having an effect. Not the effect I was expecting, but it’s only just shy of a week. (I’ve read it takes two weeks to really lock in.)

Here’s what’s different.

The ease. I wake up, close the bathroom door, sit down, and instantly what feels like a weighty amount of urine falls out of my body. This is in contrast to the way it usually is, a trickle that shuts off and on mid-stream. Usually I have to spread the part apart, push, and so on. Now I just sit and let gravity take care of it. 

The tone. Gary has annoyed me for years by trying to talk to me while I’m in the bathroom, and I haven’t been able to hear him over the noise of my peeing. It’s just too high-pitched and loud. But now the tone is lower and softer, and I can hear him. 

The leaking. Almost entirely resolved (one tiny leak), even though they did say laughing and coughing would still trigger an episode because I’m still human.

What’s the same? Amount? Frequency? I’m not sure: I need to do some analysis. To that end, I bought my own urine-catching measuring device so I can track the data the way I did for the preparation. I feel strongly that there’s been a change, but I want to see numbers. 

And finally, urgency? No idea. I haven’t tested that. I’m always steps away from the bathroom.  

I suppose I’ve been focusing on what’s working, and deliberately not analyzing the measurable data, because I don't want to be disappointed. 

I suppose the real test will be when I go to work sometime this month. We shall see. 

Bladder Botox FAQs

I am here to tell you all about bladder Botox in the form of Frequently Asked Questions.

Does it really feel like menstrual cramps when they inject your bladder with the Botox?

Hahaha, no, not at all. Menstrual cramps are much much worse. This just felt like having a needle poked into your bladder.

They did say some people are in so much pain they have to use general anesthetic.

I mean, it wasn't fun. but the mild anesthetic they used was fine for me. I did say “Oooh” and perhaps “Ow, sorry,” and my bladder did try to shy away, and took my butt with it, but it was nowhere near general anesthetic level. They do say the next time is easier because you know what to expect.

How long did it take? 

The needle-poking? Less than two minutes. It took long enough for the following conversation.

I said, “This won’t be as bad as an endometrial biopsy, right?” The doctor agreed that endometrial biopsies are the worst procedures, but the assistant argued that there’s a test where they fill up your uterus with fluid and then take photos, and you have to be having your period when they do it. Then the doctor added that there is a procedure in which your intestines are filled with barium, and then they give you an MRI while you defecate on yourself in the MRI machine. I said, well, the people having that procedure probably have no bowel control anyway, that’s why they’re there, and then he said, true, and okay, we're all done.

However, I did have trouble getting out of the office after it was over because mysterious fluids kept pouring out of me. Gels, anesthetic, maybe water, I don't know. I would clean up with the wipes the assistant pointed out, then go for my underwear, and then more fluid would exit my body. 

Are there any side effects?

You do feel like you have a mild bladder infection, but as you know you can look sideways at me and my bladder gets infected. 

Also, I need salt. I have consumed all of our salted nuts and salted crackers. I’m going to put salted butter on the next thing I eat and then sprinkle salt on it. 

What else is there to know?

It doesn’t take effect for a week. That surprised me. 

Okay. Anything else?

Epic pee queefs. EPIC.

Are you done?

I could complain about how Gary demanded I call the doctor and ask for a prescription for catheters in case I am one of the three percent who retain too much urine. But I wont. 

Walking a Mile

There is an added benefit to having a chronic illness. It lets you walk a mile in someone else's shoes. I need to walk that mile, because my husband will tell you I am a very unsympathetic person. (Other people will not tell you that. Evidently you really need to get to know me before I say things like, "My god how many times are you going to clear your throat today? Take some Claritin before I end your suffering.")

So the MS, in its infinite variety, lets me feel what it's like to suffer the ills of others. Most recently, I got to endure a young man's sex drive thanks to the pelvic muscle spasms. Those have settled down, thank God, but now I know not to expect any productive behavior from any man under thirty again. 

MS and its treatments gave me some sympathy for my difficult brother. He had diabetes, asthma, and bipolar disorder.

• The IV steroids in the hospital gave me temporary diabetes and a hint of what mania is like.
• The scariest side effect of the Copaxone side effects was the post-injection asthma.
• The brain cell death from my first noticeable exacerbation kicked me in the face with depression.

So, I need to find some way that MS can give me seasonal allergies, because seriously, Gary has either harrumphed or horked every ten seconds for the last hour. 

Botox update

Well, I'll be darned. The insurance IS going to pay for the bladder botox. 

Evidently I have cracked the code for insurance issues. It is: do not poke the insurance bear. Alert other parties involved to the situation, and do not call, worry, or look at your insurance web site for three to four weeks. It was always going to take about a month, it will take that long if you are involved or not. 

Pre Bladder Botox Adventure

So, I am going in soon for the Bladder Botox, and I confess I am a bit nervous about it, but if I am to be intermittently out in the world I can't walk about clutching my crotch to keep the pee in. 

Gary gives me gentle reminders that BOTOX IS POISON and I could do IRREVERSIBLE DAMAGE to my body.

I counter this with information.

They learned a lot about botulism in the 50's, and were able to separate the germ and the toxin it makes the body produce. Then in the 70's they began to use it to treat people with eye twitches or eye muscles that give them un-aligned vision. 

The FDA approved it for bladder patients in 2013, over ten years ago. After ten years of practice, this urologist must have made all the mistakes on other people's bladders.

The only thing that concerns me now is that the procedure can cause a pain "like period cramps." I am hoping it's a pain like normal people's cramps, not like my teenage cramps, or like my endometrial biopsy. There's a local anesthetic involved too, so maybe that will help. 

Still a bit nervous about it. Don't borrow trouble, though, right?

========
UPDATE : Doctor's office called and cancelled, saying the insurance says they have until the ninth to authorize this. However, the other insurance mess seems to be cleaned up.

Outrageous Insurance Nonsense

Usually when there's a health insurance problem, I get very agitated, get on the phone, and get angrier and angrier until I find out it is all my fault.

This last time was different. Instead of calling immediately  this time I made a spreadsheet consolidating numbers from the insurance website, the health debit card website, and the prescription drug order website. It showed the MS drug vendor submitted enormous numbers to the insurance company -- $25,000+ for the first order and $7,500 + for the second -- and the debit card acknowledged them but never billed them, and the insurance company acknowledged them by upping my out-of-pocket maximum to that $7,500 number. I sat on that spreadsheet for a week.

Then at the beginning of the next week, I thought, why are they billing me those huge numbers in the first place? The process should be: drug vendor talks to insurance, they decide what to bill me, then they send that number to the health debit card. That's how it was last year, when I had the old insurance plan.

LAST year. OLD insurance plan.

Took me NINE DAYS to remember I changed to a different plan with the same insurance company. "Has your insurance changed?" No, same company. But also, why yes, new plan. I had obediently told everyone in January except for the pricey drug vendors.

I called and was very nice when I explained it all and yes indeed, that was what happened. 

"This may take a week to get resolved."

Yes. Fine, fine, fine, fine.

 

Walgreens Vaccine Nonsense

The report is in for our physicals: despite how we feel, we are doing great. We both were sent off with vaccine recommendations. I need a Covid vaccine and Hepatitis B. I suppose I need Hep B because of my rampant drug use and philandering. (That was sarcasm for anyone Googling “Ellen S____ rampant philandering”.)

Gary needs the same plus RSV. Gary came back from his vaccine appointment claiming he needed a prescription for the RSV shot, which I should have remembered. 

I asked “What about the other two?” 

“The vaccine lady said I didn't need them and that vaccines don’t really work. But she gave me the Covid vaccine. “ It’s what he said, followed by fifteen minutes of “'WHAT ABOUT POLIO' I SAID. THIS IS A RED STATE ELLEN PEOPLE ARE CRAZY HERE.”

I was skeptical until I went for my Covid and Hep B vaccines the next day. I started by saying that I needed photos of the label for Hep B because the clinical trial requested it, and she balked. I showed her the text from the trial coordinator. Still not having it. Then in the midst of that discussion, she switched to the Covid vaccine and said the 23/24 dose was only for people over 65.

"Or are immune-compromised?" I piped up. Or, as it turns out, have not stuck with the same brand. The CDC recommendations are very complicated now, and I ended up leaving without either vaccine.

I can try my luck at the CVS, I suppose, but they are the same ones who told last year me the CVS guidelines aren't the same as the CDC guidelines. 

Frustrating. 

TWIL: Additional Post Urodynamic test fallout

The catheterization that happens during a urodynamic flow test can push air up into your bladder. And that air comes out the next time you pee. A pee queef.

Very unusual sensation and sound. Higher pitched than the vaginal expressions of air, which are themselves higher pitched than the other more common expressions of gas.

Urology Doctor Visit Fallout

I must say, I went to the urologist's office for a urodynamic test, and it was very different than the one I took in 2011, in that it was shorter. All the prep work took the same time, but instead of increasing challenges, I got filled up, peed, and that was it. 

The doctor wasn't there, but the technician gave me the news that my bladder had a good run, but it is on the way out. This neurogenic bladder can only hold 6 ounces now before the spasms get too bad and I lose it. 

I am looking at a temporary fix with bladder botox to stop the spasms, and when that stops working there's a temporary fix with a nerve stimulator, then a temporary fix with an artificial sphincter, then a temporary fix with catheters, then when that stops working, no fix at all.

It was a bit sad. Every other MS symptom has remitted to some degree after it relapsed. I think this is the first thing that MS took away permanently. It was grim to hear that there's something that will never get better. 

Then again, everybody has that same situation with their vision. My vision is never going to get better, only worse, and so what? And besides, I got over ten years of mild success out of the physical therapy on my pelvic floor. Maybe it will be ten years of success with each of the four treatments above, and that will keep me going until I'm a hundred. 

So, bladder botox (or as Gary calls, it, "POISON,") is scheduled for early next month. I hear good things about it. 

GP Doctor Visit Fallout

My most recent blood test was processed just a few hours after my physical, which means I got a jump on my yearly self-diagnosis paranoia. I got in bed and researched all my low and high numbers.

This year's nonsense was augmented my ChatGPT / AI, which meant I got instantaneous feedback that I had macrocytic anemia, or low B-12.

This led to further questions. I did not ask the AI if macrocytic anemia might be caused by thrombocytopenia and if that was a side effect of my MS drug. Instead I asked "Is macrocytic anemia related to gallbladder pain or liver pain," because at that moment I had serious stabbing pain in my right upper quadrant.

It wasn't until I got out of bed that I realized the correct question was, "Am I freaking out over nothing just because I'm lying on top of my Apple Watch charger?" 

Conflict

I'm having some internal conflict.

I want to be sympathetic to people who are mentally ill. I know it's an illness. I've had that illness myself. 

But, good god, mental illness is such a source of suffering for families, for others.

I suppose I could take a dodge akin to "Hate the sin, not the sinner" self-deception; I could hate the illness and not the sufferer. But seriously, does anyone really hate the "sin" and not the "sinner"? No. Nice try. Thanks for playing.

I do remember what it was like to be gone, and to have my guilt swell to fill the shell where I once was.  I imagine my depressed male relatives, the drunks, filled their shells with anger and alcohol. 

I need to get past that to finish this book. I don't know why it's begun to be an issue today. Perhaps it's a Mental Health month somewhere. 

Double Vision

I took advantage of the 60-degree weather to do some garden cleanup.

The first hour was fine, but then I was plagued with double vision for the last thirty minutes. 

It’s pretty rare that I have MS symptoms unrelated to my bowel or bladder, but when I have them, it’s because I am gardening. And usually, I am gardening in the heat when they pop up. Or I started when it was cool and I kept working until it was too hot.

I didn't really need to see straight anyway. I was just cutting back lirope and transferring the bugle-weed back to its rightful place after I fertilized it to death last spring. If I thought I was in danger of lopping down a bush or something I would have stopped myself.

Instead, I just staggered around with giant garden shears and a wee shovel.  My vision straightened out after ten minutes inside. Single vision, who needs it? 

But why is my MS only bad when I garden? I suppose it’s because I move my head a lot, and my head’s bobbling about while I stagger like a toddler, or like the protagonist of Poor Things.

The worst-case scenario is that I contact a landscaping company next year and have them do the cleanup.

Gary: Jealous?

Gary’s mother has fawned on him since the day he emerged from her womb, and because of that, he has a high tolerance for compliments.

I recall once I tried to see if I could get him to say, “Stop, you’re embarrassing me,” the way a woman might. I carpet-bombed him with compliments for twenty solid minutes, and he just agreed with everything I said. Because it was his birthright, his due, his baseline. 

So, I do try to supply him with a high level of compliments on a regular basis. However, I assumed that because I regularly provide him with these compliment-carpet-bombings, that he wouldn’t mind if I casually lob a single compliment out there to someone else. Not twenty minutes of compliments, not like I do with him. Just pull the pin, toss a little compliment grenade at a man, and walk away without looking back at the wreckage, like they do in action movies. A cool compliment.

I am pretty sure I’ve reported this behavior to him in the past. Recently he has become salty when I mention that I have spread the verbal love. 

The first hint he might be a bit jealous came last summer when I told him the story of SalmonPants. (Ah, the Summer of SalmonPants.) Recap: Nice young man, bothered to match his salmon bow tie to his salmon pants, I expressed my appreciation. 

Gary was focused on making toast while I told that story. Then he pushed down the toaster button, turned away from the toaster, looked right at me, said, “Whore,” and turned back to his toast. 

“Well, he can’t be serious,” I thought. And I chuckled as if he'd made a joke, and forgot it. Until today.

Today I told him that after my urologist’s appointment, I was waiting to check out, and a man was waiting behind me. I had read the urologist’s service list earlier and I realized any man at that office was there for some serious stuff. Through some chit-chat I discovered the man was eighty, and because anything in my brain falls out of my mouth, just like anything in my heart shines out of my face, I said, “You don’t look eighty at all, you look younger than my husband, and he turns seventy in less than --” 

Gary interrupted me with, “Whore.”

“Gary, seriously. You’re jealous because I chatted up an eighty-year-old man?”

He said, “Yes, you whore,” by way of explanation. It was a bit louder. Not at typical Gary level, but still.

So, what do I do? Maybe I’ll do some experiments. Maybe he can tolerate it if I compliment a man’s intelligence instead of his appearance? 

I did get him to confess that if he were out in the world he’d be flirting non-stop with every woman he saw. He then called himself a whore, so maybe that’s progress.