Queen Mediocretia of Suburbia

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.)

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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.

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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?

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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.

Coronaversary

Look how young and happy I was before the world shut down.

Four years ago today I went to Target and bought two pairs of pants in the smallest size I had been in fifteen years, then I went to my novel-writing class, then I got the text blast that told me I shouldn't go in to work tomorrow. 

Then I went to buy toilet paper and catalogued the larder, which I felt would sustain us for what I speculated would be the next "two months."

Now it's four years in. I am sick of it. I just can't do it anymore. 

Trial visit

I went to get the second dose of antibodies for the clinical trial. The staff said one participant had an adverse event after the second dose, but frankly it was what I’d call baseline. Some skin flushing? Turning a bit pink for the greater good? I will make the sacrifice. 

First I needed a short physical. The protocol-approved physician was out of the country, but of course there was a backup approved physician. Then we heard the backup was ill and at an urgent care location. 

I volunteered to come back tomorrow, but per protocol, there is a range of days for each appointment and I was on the last day of the range. 

The situation snapped into high gear. Every person associated with the trial came in and asked if I wanted some water. Then they had an animated phone conversation with the head office. And then, after an hour of uncertainty (are you sure you wouldn't like some water?), the backup doctor called to say she was fine and was coming in to resume duties. 

I was not at the top of her list, obviously, but eventually she gave me the all clear and I got the second dose. Then I just needed one last okay. While I waited, the study staff came in and asked if a) I would like some water (no) and b)  if my face was always that pink (yes, that’s my baseline face, people comment on it at work). Eventually I got the all-clear and headed home. 

It would have been unpleasant, but it let me see how much care goes into the trial. I worried they’d need the exam room, but actually, that room has my name on it for the day. The research coordinator divvied up my three vials of blood into 24 teeny vials so they could ship a dozen to the United Kingdom and keep a dozen here in the States in case there was a problem in transit. After that, he left to get some fresh dry ice to pack my blood after he defrosted the mini-freezer reserved for my blood because there’s a schedule for that too. Can’t let my twenty-four tiny vials get too warm or too cold. 

So, I am not just a guinea pig, but a priceless princess of a guinea pig. Next week when I come in  for the one week post shot check-up I am SO tempted to say, “I’m fine, except I’m thirsty, and does my face look pink to you?”

Checking in with the Neurologist

I try to document my neurologist visits here. 

• I was a bit slower on my cognitive test. This tracks with how I have been at work. Every Monday the rest of the team remembers the status of the projects we are working on, and they say to me, "Remember, Ellen, we talked about that Friday?" Hello, no, I do not.
• And, well, I didn't even get two steps into the "walk a straight line" test before falling over. 
• I have been exercising every day. Did he ask about that? No.

It’s Official (and concerning)

Well, I am officially headed to the WashU loading docks in the event of my death.

I didn't have to do anything but fill out a form with two witnesses and now I have this snazzy laminated card.

The front is legit.

The back fills me with dread. See it? SEE IT?

What do I do? Call the toll-free "numer"? Or, is this something like the deliberate errors cartographers add to maps to protect themselves from plagiarism? 

TWIL: Evidence of a Possible Stroke

All day yesterday my entire house smelled like chocolate cake. Delicious. 

Only there was no chocolate cake in my house. 

I, of course, thought of my Canadian friends, and their belief that those having a stroke smell toast. 

I tried to track down the genesis of that and got sidetracked by the wonderful video debunking it.

So ... according to her maybe I have Parkinsons?

Allergy Skin Test

So, after I passed the blood test to see if I was allergic to penicillin,  I had to prepare for skin tests.  I had to buy one capsule each of the penicillin-derivatives Amoxicillin and Keeflex, plus one from a different family, Cefdinir. I brought them to the doctor’s office. I took the morning off. I was steeled for needles. 

Before the skin tests began, she gave my arm a tiny shot of 5 % penicillin mixed with 95 % saline, then an inch below that half and half, then 95 % penicillin and 5 % saline went in my arm below those two.

Five minutes later she checked and said, “We're done before we started. You’re allergic to penicillin.” Evidently the 50/50 mix got me. It was red, and the 95% area was a hard red bump. I think the initial blood test came back clean because I'm not allergic on a microscopic scale.

So I got Allegra and prednisone, and queries as to my status every ten minutes until I was cleared to go home. No Keeflex again ever. (I suppose I was lucky to puke it up when the dentist gave it to me years ago.) No amoxicillin either. Cefdinir, however, is still on the table.

It was all very safe. And mom-in-my head said, "I told you that you were allergic to penicillin. How could you doubt me?"  I told Mom I might have been able to take a derivative, and that Grandma said they gave me penicillin once. “She just liked stirring up trouble,” Mom-in-my-head said. 

So, in the new year, I go back to see if the non-penicillin Cefdinir is an option to treat any drug-resistant bugs I may pick up as I age, not to mention the syphilis I am certain to get in assisted living. 

The Purpose of the Initial Penicillin Test

I thought the initial blood test was to determine if I was allergic to your basic penicillin, but on further reading, no. It seems the initial blood test determines if you are at risk of anaphylaxis when you get the skin test.

I passed the first test, so my next visit is the skin test. I am to purchase three tablets of penicillin and its derivatives, and then I suppose they grind that up and poke it under my skin.

But what I don't understand is: that when I've had drug allergies in the past I never react on the first dose.  (Dose 1 of sulfa, fine. Took dose 2 right before giving a speech. Asked if there were any questions at the end and every hand shot up. “Do you know your face just doubled in size?” )

So, it takes two doses: one to make the antibodies and one to use the antibodies. Everyone’s like this, right? So do I get two skin tests?

Well, at the moment it is moot because the pharmacists aren’t on duty at the local Walgreens, so, I can’t get the requisite tablets. 

Give Me All the Penicillin

Well, Mom-in-my-head, it could be that all your concern about penicillin was for naught. The first test, the blood test, came back negative.

This document from the Centers for Disease Control sort of agrees with the first allergist’s claim that you can be “allergic one day and not the next,” if you rephrase it as “allergic one decade and not the next.” And I’m not done; I still need to do a skin test to see if I might be allergic to the derivatives like Keeflex. 

But mark me safe from old-school penicillin. Of course there’s not much I can do with this information other than go out and get syphilis.

Allergist

When I was 22, Mom took me to an allergist. I had just gotten engaged to Gary, and I guess she wanted to hand me over to him with all my medical difficulties documented and disclosed, as if she was selling a house. "Don't give her raw egg whites, or the sewer will back up."

The allergist greeted us, and Mom listed the things she suspected I was allergic to (penicillin, sulfa, raw egg whites) and said she wanted him to give me one of those scratch tests to see what else I needed to avoid.

"No point," he said. "I could test her today, and then tomorrow she could be allergic to an entirely different list of substances."

Mom was baffled in the face of an allergist who didn't seem to believe in her interpretation of allergies. She said, "So, she just had sulfa and her face swelled up. You are telling me that tomorrow she might not, so you won't test her?"

He didn't answer. Instead he asked, "Why did she get sulfa?"

"Because she had a bladder infection."

And then the doctor asked my mother to let him speak with me privately, and then he asked me if I was having sex and explained to me that was how I got the bladder infection. I just nodded, as if I hadn't already looked bladder infection up in our family medical encyclopedia.

I met up with Mom by the elevator, where she was fuming. She grumbled, "What was the big secret?"

"He wanted to tell me sex can cause bladder infections."

"Ridiculous waste of time," she said.

Now, forty-one years later, I am spending the morning in an allergist's office, essentially asking the same question Mom did all those years ago. It’s totally possible the doctor will just tell me that I could be allergic to penicillin one day and not the next. I’m looking forward to hearing that.

TWIL: What You Need to Do to Get an RSV Shot

You need to do these things in this order to get your RSV shot. I believe I might have had RSV once, and it was so miserable that I obediently did all the steps below.

1. Find out if your insurance will pay for it, otherwise it costs $300. 
2. Have your doctor send a prescription to the pharmacy.
3. Arrive at the Walgreens just after it opens so you can avoid others.
4. Come back in an hour after the actual pharmacy opens.
5. Leave and make the necessary appointment online.
6. Come back to the Walgreens at the appointed time.
7. Ask the woman giving the shot to write down some extra information for the clinical trial.
8. Wait 30 minutes after filling out the paperwork.
9. Get the shot.

They don’t know how long the the shot is good for. Two years at least, but maybe more. 

TWIL: Bipolar Test

I remember when my brother was first diagnosed as bipolar, he told my Mom he'd had a blood test that proved the diagnosis. She didn't buy it and still stuck to her diagnosis, which was that he was just a jackass.  

Evidently there really is now a blood test for bipolar. 

Blood Test Could Speed Diagnosis of Bipolar Disorder (msn.com)

Work at Home Update

Well, that was fast. I got the okay from TeddyJ to work from home in a week and a day.

There will still be days I have to come in: once every few months, I believe. And if my absence will inconvenience anyone, like if they would need to schedule a special meeting room with Zoom capabilities to accommodate me, then I would come in for that.

And on those days, shall I come in armed with a pool noodle so people keep at least four feet away?

And shall I wear this shirt?

I don't know how long the others will be held to the expectation that they will come in three days a week, or when TeddyJ will realize the shared-workspace floor plan they instituted will not work with everyone coming in on the same days. I also don’t know what happens to the people who, unlike me, want to keep their auto-immune problems to themselves.

There shall be jealousy. I have already suggested that all the haters could work from home like me had they only prepared in advance as I did: by getting a progressive neurological disorder for which they needed brutal immune-destroying medicine. They have only themselves to blame.

Doctor Visit

I had several reasons for visiting the GP on Friday.

• Find out what might be causing my increased libido. I wanted a GP opinion. Sure I had the urologist's opinion ("Spasms!") but I know from MS experience that specialists only see their problem, not the whole picture. For that you need your GP. The urologist might be right, I just didn't want to miss a general cause in favor of the specific.
• Get a prescription for preemptive antibiotics to ward off any UTIs as they are beginning. 
• Get a referral to an allergist to eventually see if I really am allergic to Penicillin, opening up my antibiotic options in the future.
• Get a signature on a TeddyJ form. TeddyJ wants everyone back three days a week starting in January. TeddyJ doesn't know that I am required to avoid my husband for a week after contact with the outside world. They say health exceptions will be granted. I was there to get a doctor's signature on the exception form.

The form, the prescription, and and the referral were easy. Regarding the libido, the doctor speculated that my thyroid might be off.

She also mentioned my brother died recently. 

"Why would that make me horny?" I wondered, and some articles say it definitely does. You want to connect with people, physically or emotionally, and while usually sex drive decreases during grief, sometimes it does the opposite.

I did bury him at the height of my horniness and it does seem to have gone down since then. On the other hand, none of it seemed psychological, instead, it was so brutally physical in such an alien way that it seemed like it had to be caused by a compressed nerve or a brain lesion (or, as suggested, Spasms).

I suppose the grief is a contender, giving the weepiness those articles provoked, plus the grief-dodging I do every day. (I focus on the happiness I feel now that he's gone, and ignoring any sadness.)  

I guess if the lust is from the grief, then now that it's acknowledged it should let up.

======

One hour later. Nope, not letting up.

Again with More Advanced Nonsense

I got a call yesterday from the urgent care, saying that the pink pee culture came back as indeed a urinary tract infection. 

Not a typical infection, though, a special one. For this one was not caused by errant e-coli bacteria trekking on their own across Vagina Valley into my urethra, (not being transported there by reckless wiping as everyone assumes). (Seriously, it's not me. They are there already. I just have more at any one time because it takes me longer to pee them out.)

So, no e-coli to blame today. Instead, today's bacteria is Proteus mirabilis, an entirely different bug. And it has the enchanting name of "Proteus", the shape-shifting sea god, and "mirabilis" from the Latin meaning wonderful or surprising.

• It swims fast because of its many legs. ("Thousands of flagella!") I told you, I’d never had an infection move so fast from pain to pink pee.
• It "swarms," which sounds like the bacterial equivalent of murmuration.
• It draws bulls-eye patterns when you put it in a Petri dish.
• According to Gary’s research, you can eat something contaminated wth Proteus mirabilis and it will make its way to the bladder top-down instead of bottom—up. (Or back to front for you wipe-shamers.)

You know what else is fun? My particular strain is resistant to the antibiotic I have been using. (My bladder, which had been improvimg, heard that and spat out blood not an hour later.) And even more fun? They prescribed Cipro for it, as it is my only option what with the penicillin allergy. 

Yep, Cipro, Killer Cipro, Gary's least favorite antibiotic, recently on this blog in an entry that ended with "So, storing that away if anyone tries to kill me with Cipro, I guess."

I ended up talking it out with Gary, and I would be in danger if I were an athlete, but given I don't use my tendons all that much I should be safe.

Also? Was it worth it? Not quite so much any more.

Again with this Nonsense

A few nights ago I did give Gary another chance for some digital spelunking in my woman cave, and it was very gratifying, even though I still had to argue with him about what muscles were where. 

Full disclosure. “I did give Gary another chance” above is inaccurate. Rather, read “I tearfully pled with Gary.”

Begging for it made it all the more maddening when sixteen hours later I was pissing out blood at the Urgent Care. I have never had bladder infection symptoms come on so fast. One minute I thought, “Ow, that hurts a little,”and ten minutes later I hopped in the car when my pee turned that lovely magnolia pink. It truly was a storm of symptoms.

Then again, perhaps I don’t have a bladder infection at all. I was convinced last month that I did, but when they cultured it I did not. Perhaps the menopause has just turned all my interior parts into tissue paper, and touching one scrapes the next organ over.

Worth it, though? I would say yes.