Queen Mediocretia of Suburbia

A Message From My Colon.

Allow me to introduce myself. I am Ellen's lower intestine, Colin Bowel.

I said nothing when she  spoke ill of me in the past, But now she has gone too far. She claims that it is fear of the new car that upsets her digestion. No. I upset her digestion. I run her life.

Now that I have matured I feel I can't be expected to give my all the way I used to, but when I do, I think I do a solid job. However, she is trying to use mechanical means to control me, to quell my spirit now that I am old, and that will not do.

That's why I send her back to the bathroom every time she leaves the house, just to remind her who is in charge. 

I felt I needed to give a rebuttal.

 

 

Doctor's Visit

I was at the neurologist, IN PERSON. Terrifying. Happily, he did not try to shake my hand like he usually does. 

I was calm, until he got to the part of the exam in which he touches both sides of my face to test for any facial sensory loss. 

I pulled back. "You're touching my face!"

"Yes, does it feel the same on both --"

I wanted to swat his hands away, but I don't think I did. "Stop touching my face!" 

"I washed my hands. Does it feel the same on both sides?"

"Yes!" I said, and thought, "Get off my face! I don't even touch my own face." (Actually it's entirely possible I said all those things and swatted his hands away. I was unprepared.)

I then began to think maybe I am being too vigilant. He reassured me that if I came down with the Covid (unspoken: like if maybe someone else touches my face) I can come right to his office  and get some monoclonal antibodies. So that's great. He did say only about a dozen of his patients had gotten sick and only one even went in the hospital. (And I am sure he touched many more faces than that.)

In fact, many things are great in this situation. I can work from home. I live where vaccines and tests are available. I have no kids to worry about. My boss already knew I was immunocompromised, so no big revelations. I'm not on the really heavy duty medication that would wipe out my entire immune system instead of half. I should be much much calmer than I am. 

The next day I thought about touching my face, but I couldn't do it.

A Clairvoyant MS Symptom

On Wednesday the 6th my brother called and complained about coughing, malaise. This has been his baseline for the last month, most noticeable following a medical procedure  the week before. I didn't think any more about it.

Later that afternoon I noticed my left leg was tingling. It went away after I walked a few paces. Then it came back, and increased, and spread. Not constant though, sometimes it stopped for a few minutes.

On the next Monday my brother wound up in the hospital, and then Tuesday my neurologist replied to my email about my tingling with "It's probably stress making an old lesion flare up again." I realized Dave had started complaining about being ill last Wednesday, the day the tingling started. 

"Duh," you say, "Why didn't you write off the tingling as stress?" Well, my tingly right hand has always been my stress-ometer. This is the first time my legs let me know I was stressed. But, now that I know that my whole body has psychic diagnostic abilities that can identify when situations are about to deteriorate, I will let Dave know. "Heads up!" I will say, "My legs / hand / uppper lip is sending subconscious electrical signals that you are about to land in the ICU." 

Since then, President Clinton has stolen Dave's thunder by being put in an ICU with the same problem. My brother and I speculate a lot about if Dave is getting the same treatment Bill C. is getting. "I bet William Jefferson Clinton's doctor isn't telling him they don't know what kind of bacteria it is."

They found his bacteria and he got back home yesterday, and while I know he isn't completely out of the woods, today my leg stopped tingling. That's a good sign.

Lupoid Sclerosis

My brother spent a stint in the hospital recently, for a stent. He came out without a stent but a tube connecting his liver to a bile drain tube outside of his body.

My job was to read his diagnostic tests off the hospital web site and report back to him the state of his bilirubin and other liver numbers.

One of the tests they ordered was for aPTT, the time it takes for his blood to clot. (45 seconds, if you are wondering, which is a bit long, she typed, entirely violating her brother’s HIPPA rights.)

I followed a Google trail of family buzzwords, from “inherited” to “auto immune” to “lupus” to “lupoid sclerosis.” And then, to “rare” and “controversial” and “debate.”

Interesting, though, that there’s a supposed Lupoid variant of MS in which (if I understand correctly) your slippery non-clotting blood approaches the blood-brain-barrier, sneaks in, and then does a lupus-like attack on your central nervous system. And then, for just an extra touch of soap-opera drama, it gives you a false positive on your syphilis test. 

Can I find any of this today? No, I cannot, at least not in the straightforward form I saw it last week. Still, nice to know that they are out there continuing to research MS, finding new hybrid forms and the like.

My brother is home now. His dog dealt with his absence by chewing up shower curtains. I am worried the dog will feel the the bile drain will have the same mouth-feel as the shower curtain.

Outrageous Number

A few weeks ago I saw this news post and it alarmed me so much I had to post my fears to  Facebook:

I’ve got it 485 times worse than the average person? Yikes, indeed. 

I quoted that number to someone last week, and I thought, that sounds like a made -up number. I need to find that study.

Which I did, (https://hopkinsinfectiousdiseases.jhmi.edu/wp-content/uploads/2021/06/6-9-21_Update_JHMI-Recommendations-for-COVID-19-Therapeutics.pdf).

Before I even tracked down the 485, I saw THIS:

So that you don’t have to read that, I think it says that in Iran Ivermectin sped up recovery from Covid. Only in Iran. I think they are actually saying they’ll study it more. Another source said it was only studied in the Alpha variant. 

I don’t espouse the use of Ivermectin, certainly not the stuff you buy at the feed store, but if this pans out MSNBC will have to grovel. Perhaps that’s the appeal.

Speaking of groveling, I eventually found the 485 study: “And a study published online last month in the journal Transplantation estimates that organ transplant patients who have received two vaccine doses are 82 times more likely to develop breakthrough infections than healthy fully vaccinated people, and 485 times more likely than healthy vaccinated people to be hospitalized with Covid or die.”

Organ transplants, not MS. I might need to walk that back.

FDA, CDC, WHO’s on First

Last Friday while I was working I kept one eye trained on the CNN closed captioning so I could see the specifics of specifically which immunocompromised people would be able to get an additional Covid vaccine shot.  At the top of the hour I shouted at Gary: “THEY STILL AREN’T SAYING ANYTHING NEW, JUST HIV, CANCER, AND ‘SOME OTHERS.’”

I forgot I had been waiting for a Zoom meeting to start for five minutes, and if I’d had the sense to mute beforehand no one would have heard me. Luckily, only one person was on time and got to hear my rant that FDA, CDC, and the World Health Organization were not being clear. And of COURSE they announced it late Friday when all the doctor’s offices are closed.

This article suggests I will get a notification, because I noted that I was immunocompromised on my form. Or will I? Who even knows. Well, WHO knows I shouldn’t get a shot, FDA says it’s safe, CDC is saying it’s only the interferon people who should get the shot, but The Media wasn’t reporting it that way.

Whoops, it’s been an hour, now they are.

“Certain — but not all  — “  means biologics, which means interferons, but maybe not Mayzent. And you know what? What would happen if I lied? Oh, right, This shot might do nothing and then I would have used up my chance if they later prescribe two extra shots for people on my drug. Or perhaps I need to go off my drug for a week.

This is just never ending.

Vaccines Coming?

ABC news thinks boosters for the immune compromised are on the way!

But even as I get excited from a selfish point of view, I would think getting all the young kids vaccinated before they go back to school would be the priority. The World Health Organization said “Let’s get other countries vaccinated before the US gets an extra dose, how about that?” which I appreciate. 

So I’m torn. It’s not the right thing to do, big picture. I guess I’ll be okay no matter which way it goes.

 

Room Temp Meds

When I started the Mayzent a year ago, I remember I was instructed to refrigerate it until I opened it, which seemed odd, given those instructions are the opposite of every other thing you put in your refrigerator. We don’t buy refrigerated mayonnaise at the store, then bring it home and open it, and then leave it in the pantry. And because that was so odd I asked specifically if that was the rule. Yes, that was the rule.

So the last batch sent via UPS was delayed in transit for a day, and then arrived late that second day, when the temps were in the high 90s. The ice packs inside the styrofoam box were cool, but not cold, and certainly not frozen. The drugs themselves were room temperature. 

I made a fuss at the Walgreens twenty-plus years ago when my interferon had not been refrigerated. (I came back for what I thought would be a replacement, and while it was cold this time, I peeled off the label and they’d just put a new label on the old box.) 

I thought I should do some research this time before I start worrying, and read this from the manufacturer: 

How should I store MAYZENT? 
Unopened Containers
MAYZENT 0.25 mg and 2 mg tablets may be stored at room temperature between 68°F to 77°F (20°C to 25°C) for up to 3 months. If you need to store MAYZENT tablets for more than 3 months, containers should remain unopened and stored in a refrigerator between 36°F to 46°F (2°C to 8°C) until use.

So, new instructions. (Put the Mayo in the pantry, unless you won’t use it for three months, I’m which case put it in the fridge. In either case, put it in the pantry after opening.) The document is dated January 2021. I’m still going to refrigerate when I get it, but I think I’m also going to place a call to the Mayzent line to clarify. If the rules have changed and we are following Mayonnaise Protocol now, I want to know.

More Local Bear News

Someday I will tire of hearing of bears roaming my area, but today is not that day.

Two bits of bear news.

1. Last Tuesday’s bear evidently did indeed swim as the crows flies, crossed the river, and opted for a trash bin dinner 20 miles away instead of our healthy vegetarian offering.
   
   
2. The Bear of the Summer 2020, Bruno the wandering bear, (DTF) has reached a sad, sad end. If only he had stayed in Missouri, we would have kept him safe. So sad. 

Bone and Bosom Update

My mammogram and bone density test went almost perfectly. Instead of feeling the usual pancaked bosom sensation, my breasts were impervious to pain. (Bwhahah, lifts breasts victoriously to the heavens.)

The mammogram showed no lumps or irregularities. The diagnosis by the lady doctor was: “Breasts hurt sometimes.” I accept this diagnosis. All in all, a good report, though the mammogrammer commented on the number of bruises I have. That will be resolved by the thyroid test later in July.

My bone density? Hard to say. I am above average for a woman of my age. Technically it says “[you are] 0.9 standard deviations above the mean of the average bone mineral density for age- and gender-matched subjects,” and I am utterly unable to do that math so I stopped reading at “above average.”

My spine is fine, my hips aren’t as good as my spine but okay, and my left femoral neck is not on board with the rest of the bones: “left femoral neck is mildly decreased.” 

I was rubbing my neck to see I could feel anything while I looked up left femoral neck. Not what I expected.

I can see why that would fracture. Looks delicate.

After I waded through all the all the standard deviations and the oddly-placed leg necks I found some text that put my situation in plain terms: I have a less than one percent chance of breaking my hip in the next ten years. There’s an 8% chance of breaking something else, though. 

I accept this prognosis.

I’ll Take That Spare J&J Vaccine

I read last week that the government found itself with a surplus of Johnson and Johnson vaccine. Evidently interest in the J&J vaccine dropped after that blood clot scare, and they were left with too much vaccine that was due to expire. 

I’ll take your scraps, I thought at the time, just pass it my way. I could use a booster. I would be happy to be hooked up to an IV drip of vaccine and they could keep measuring my antibodies until I ding and I’m done.

Evidently the Powers That Be sniffed the vaccine and decided it would still be good for another month or so, so that’s fine. I’m happy enough here at home. If I’m not out next March I might lose it a little.

Damnogram

There’s been a vague pain on my left, ambling between my left armpit and left underboob, kicking tender parts and complaining when I rub it looking for lumps.

I had to get a mammogram anyway. I called, and after I scheduled one for the end of the week, I remembered I needed to get a bone density test because I am just that f-ing old. The re-scheduler asked why I’d decided to get a mammogram anyway.

Did I say “Because it’s been two years” and leave it? No I did not. I said, “Because it’s been two years and my left armpit started to hurt.”

And thus my simple in-and-squish-and-squish-and-out mammogram morphed into a diagnostic mammogram requiring an extra doctor’s visit. 

Of course, nothing hurt anymore when I walked into the exam room. Then he added a little elbow grease during the breast exam and I squawked.

“Ack! Sorry. Sorry I yelled. That did not feel good.”

Which was a WEIRD thing to say, because it suggests I thought it felt good up to that point, and I was in that mid-breast exam social situation in which one don’t make eye contact with one’s doctor while he’s kneading one’s bosom anyway. Awkward. 

He found no lumps, but he also found no muscle strains, so I’m approved for a diagnostic squish in a week and a half. I’m also signed up for the bone density scan on the same day, which I am sure will “feel good.”

Well God Bless the NIH

I was all pouty on Facebook about how everybody else is fully immunized and gets to go out and play and I’m grounded. No doubt they read my post and now as a result the NIH is going to study the immunosuppressed to see what can be done to get us some antibodies. 



Excellent. Shall I be Spartacus again? It does mean 2 years of blood tests and going off my drugs for a month.

Some Nice Covid Etiquette

One of our team leaders at work announced a retirement, and because everyone is fully immunized, the retiree wants to have an in-person retirement party. 

The remarkable thing was that he immediately followed that with “However, I am aware that some people have medical conditions that make it so can’t they are still at risk even if they are immunized, so their suffering continues.”

I know, he chose the word suffering, which sounded overly dramatic (the party probably won’t be THAT good) but it was nice he was aware not everyone is in the 100% safe boat.

I would have thought he was speaking directly to me, but I know better. When I told my boss about my inadequate vaccine situation, he was adamant that if I wanted anyone else to know that I’d have to be the one tell them. This non-secret would go to the grave with him.

I suppose it’s an HR rule. Some people are very private about illness, and the boss who discusses any illness would be seen as … a health gossip? 

At any rate, I felt that the disclaimer for the vaccine-impaired was very polite. 

Bruised

I was at my physical and the doctor asked me about my five bruises. “Yardwork.” I said.

That was early last month. Now I have 36 bruises. I didn’t even know about the ten on the back of my right arm; Gary had to ask why I have ten tiny bruises in a row. And 11 on my left leg, and 11 on my right leg, and then a few — four — on my left arm. 

Doctors know, though. They want me back for a repeat thyroid test in three months because the standard test shows some wonkiness. I have been waiting for years for that organ to peter out: during one of my two MS flare-ups there was a lesion too close to whatever brain part controls that system and the resident were quite surprised (and perhaps a little disappointed) that I wasn’t having thyroid problems. 

It might be Hashimoto’s disease, when the immune system attaches the thyroid, because sometimes a white blood cell wants a bit of variety in its diet of axonal myelin. I would think the pills I take for the MS would keep the immune cells away from my thyroid just as the same as they do when they guard my central nervous system. 

It certainly explains the three-month weight-loss plateau. Or, perhaps it’s just a fluke in the blood test and I really beat myself up gardening. 

Vaccine 2: Giving it My Full 74%

I got my second vaccine. This time it was a drive-through, just as organized and efficient as when I came for the first shot. 

As you know, the doctor said if Covid vaccines act like flu vaccines, this will protect me against 74% of the covid viruses I encounter. I suppose that means there’s a 26% chance I will carry it to others and infect them.

The first military person to review my form said, “Now, I see you’re immunocompromised. Did they discuss with you that you will have reduced immunity?”

I thought, “They? Who is they?” I agreed that “They” had anyway.

Five minutes later the next camo-clad woman said, “You take a medicine to reduce your immune system?”

”Yes, Mayzent, for MS.”

”And you have discussed with your doctor that you will have reduced immunity?”

Damn. It. Asked me twice, this time specifically about the doctor. Poof, gone, any hope my doctor was just being overly cautious. I am NOT going to DisneyWorld. I’m not going outside until that curve bottoms out entirely.

Took 15 minutes this time before I got the shot, 15 min wait, took an hour overall with travel.

Side effects? None so far. Will there be any? I’ll have to add 25% to any I have to get an idea how others are suffering.

Oh, Back to Hating the Pandemic Today

I had a doctor’s appointment a few days ago.

I arrived ten minutes early at 8:20 and texted “ARRIVED’ in response to their text of that morning. 

At 8:40, ten minutes after the appointment time I again texted “Arrived?” Because I didn’t want to be pushy.

I made excuses - Good Friday, early appointment, significant people might be late —- and at 9:10 I called the phone number. 

Shock. Apologies. Go ahead and go right in.

I explained to the receptionist that I had texted twice and got no response, and she checked and they had received no text. She said that I was late, and even past my 15 minute grace period, and I had missed my appointment.

I showed her the texts, again, and she said they hadn’t gotten the texts.

“Will I be charged for this visit?” I asked.

”No.” 

“Then I would be glad to reschedule my appointment.”  (Remember that for later.)

She said, “I’ll check with the doctor and I’ll see if she can fit you in.” 

I had things to convey to the doctor, mainly tidying up some errors in my family history, like my biological father’s cause of death, and I didn’t want to be fit in.

Instead, I said, “I would be glad to reschedule my appointment.”

“Let me check with the doctor.”

I paced over to the glass door and read all the signs backward and tried not to fume. 

She came back and said, “She says she can fit you in.”

I said, “I would be glad to reschedule my appointment.”

She looked surprised, and then said, “Oh, so you want to reschedule your appointment.”

This time I paused before I said “Yes” very significantly.

And I understand, she wanted to make it all right, and was focused in getting me fit in, and was unaware I didn’t want to be there, double-mask or not, and “I would be glad to reschedule my appointment” isn’t the same as saying, “Screw this noise, I am rescheduling my appointment.” And it was partly my fault for waiting so patiently. 

And I would have left thinking that, only I was still in the parking lot when a different person called and explained what happened: “Sometimes that system just loses texts.” 

So I rescheduled with her, which, as you know, I WAS GLAD TO DO, and then I asked if when I returned next week if I should wait for a return text, and she giggled and said, “Oh, no, don’t do that.”

I would have been fine without the giggle, but the giggle suggested to me that this was just a great lark we’d had, so i just said fine, thank you, goodbye, and hung up. 

So I can’t really blame the doctor’s office, and I can’t blame myself for being extra polite for once in my life, so all I can do is blame this cruel pandemic so screwing up the simple task of visiting the doctor.

And Now Today I Don’t Hate the Pandemic

Okay, so evidently I have to stay in my bubble until the herd is immune. I am jealous and pouty. 

But still, it’s been a few days now since Thursday’s doctor told me, and I’m feeling better about it. 

I’m fine being alone.

I like working from home.

I LOVE wearing the mask.

I like having someone else do the shopping.

I’m not traveling anyway for the next few years. 

I know other people miss hugging their friends, but I’m no hugger.

Really, my only complaint is that other people are free and I am not, but that said I do really like my prison.

I’m sure I’ll get stares if I’m in a mask in public in the fall - but why would I need to be in public? What would tempt me out? And stares would let me test out my old-lady-don’t-care persona, anyway.

Don’t know how old it will get by this fall, though.

Vaccine

So, virtual neurology appointment yesterday. Standard questions, and then at the end he mentioned a November study of Mayzent users who were vaccinated for the regular flu.

There was no data specifically for covid, but for the type-A flu, 92% of the control group got protective antibodies, but only 74% for Mayzent.
Type-B: 43% control, 26% Mayzent.
Pneumonia: 100% control, 100% Mayzent. Cool.

So that explains why we weren’t in the early trials — we would have dropped the numbers.

(If you are curious, Gilenya numbers are worse.)

I believe his recommendation was “Be vigilant and wait out the Covid.” So, I can’t relax even after I get fully vaccinated. And I’ll have to be a fragile flower. 

Maybe there are enough fragile flowers that we can get an extra booster shot? Maybe?

Annual insurance Nonsense

Sigh. A recap. I have mentioned this before. (Those are only the two most recent posts; I’d say there’s a yearly post on this topic.)

1. I take very a expensive MS medication. This is redundant. No such thing as a cheap MS medication.
2. I am fortunate that the manufacturer acknowledges it is outrageously expensive, and provides financial assistance for, I suppose, every human who takes their drug. (I wonder if everyone says “financial assistance” through gritted teeth.)  
3. This comes in the form of paying my $4,600 deductible. With a 200 dollar a day pill I meet my deductible on January 23rd.
4. The rest of the year I go to my standard physical, gynecologist, mammogram, and so on. No big wallow in the hospital or anything.
5. Every year each health insurance company I have had tells me they have an issue with how I am getting reimbursed by the financial assistance company.  I play their game. They don’t like me getting a check, I use the assistance company’s credit card. They don’t like the card, I go to electronic deposit.
6. This year they took a new dodge: they paid the full amount, including my part. So, since I didn’t pay the deductible, I can’t be reimbursed for the deductible. And the financial assistance certainly wont dole out cash every time I get antibiotics or get a UTI. Well, bad example, but you know what I mean. I’m still better off than I’d be without insurance, and I doubt I’ll even come close to meeting my deductible, BUT STILL.

When I realized what was going on, I took one trip around the phone circuit: specialty pharmacy transferred me to the insurance who transferred me to the regular pharmacy who transferred me to, yes, the specialty pharmacy. 

I called my assistance coordinator, who said, “Wait until three months from now and see what they do the next time you get your meds.”

I planned to do that, all the while avoiding all doctors just out of spite, but then my brother tracked down the number for the insurance complaint line in my state.

It was the quickest pickup of any phone call, and the shortest. She said:

“Insurance companies started doing that last year. There’s no law against it. Nothing you can do. “

It was disappointing news, but I loved that she actually ANSWERED my QUESTION. 

You win this round, insurance company.

Human Petri Dish

From NPR, February 5th:

An immune suppressed man in Boston caught Covid and didn’t get over it. He couldn’t, because the virus kept mutating inside his body. They sequenced the genomes while the poor man took five months to die, and they found twenty different mutations. Now that the global mutations are in the news, this man’s story is being told.

Even if you don’t read the link, go there for the graphic that looks like Elmo is dangling like a bunch of grapes and Cookie Monster is trying to eat his hand.

 

Bumped Again

Well, maybe not “bumped” again, given that I’m really just clarifying the definitions of the vaccination tiers.

It seems that in Missouri:

• If you take an immune-suppressant so you don’t reject your organ transplant, then you move up in the list.
• If you take an immune-suppressant because you have an auto-immune disease, then you don’t. 

Do I want to know how they split that hair? I’m imagining the debate. “We’ve invested lots of time installing those kidneys: those people can’t die. Those auto-immune people are already just running out the clock.” 

More likely, there are just too many people with MS, RA, and all the other diseases that require that you knock out your immune system, compared to how many people have had an organ upgrade — sorry, compared to how many people have had live-saving organ transplants. 

And then on top of that, CNN has decided to put this number in my face every day just to rub it in.

Dr. Fauci

I was watching CNN, last week, with the sound off, because it’s what I do, all the time, and Dr. Fauci was answering viewer questions about the vaccine.

I wondered, “Can I even take it? I can only take dead virus vaccines. Is RNA live or dead?”

And just at that moment the closed captioning answered me. Here it is from the transcript.

LEMON: Let me follow up on this, because are there preexisting conditions, Dr. Fauci, that would preclude someone from getting this vaccine?

FAUCI: Well, actually not. I mean, if you -- if you were -- if this were a live, attenuated vaccine, which is one that would replicate a bit in you, you would be concerned that, if someone had an immunosuppressed disease, a disease that either alters and suppresses the immune system or a medication that you were on that suppressed the immune system, you would be reluctant to have someone have a live attenuated vaccine ...

I thought, “Reluctant?  I’m game for anything, but my doctor says I can only get a dead vaccine.”

Dr Fauci, employing his trans-continental psychic abilities, answered me.

... But when you have a vaccine that is essentially a protein, namely, a gene that codes for the particular protein, in this case, the spike protein, an underlying condition might mean you don't get as robust a response, but it's not a contraindication, so that you should not get the vaccine.

I thought, “Well, that’s a little obtuse. Are you saying I can take it, even though it won’t do me that much good?”

GUPTA: And so, for example, someone who's got a weakened immune system or is immunocompromised, is that what you're referring to, Dr. Fauci, that it wouldn't necessarily be unsafe? 

FAUCI: That's -- yes.

GUPTA: They may just not get a -- the same response?

FAUCI: Exactly. Exactly, Sanjay. You have to separate safety and the likelihood that you will get a good response to the vaccine. It is not unsafe for someone who has an immunodeficiency to get vaccinated. They may not, in fact, make as robust an immune response. But, in my mind, it's better than not getting vaccinated at all.

So, now that Dr. Fauci made that decision for me, I thought I should look at when I would be getting my vaccine, and what documentation I might need to bring to prove I’m in the immune-compromised category.

I’m in Phase 1B, so I’m up several weeks after “mid-December,” which seems to me would be today. As for the documentation, Missouri will be using the honor system when it comes to saying you are at risk. Right now I can think of several people who will be lying. 

Consumer Warnings

Key information is lurking in the websites and fine print for some over-the-counter medicines. Beware. Not only is Geritol 25% alcohol, MiraLAX has key data on the website that is not on the bottle.

My neurologist heard I was still on a weekly elimination schedule and suggested the MiraLAX. I followed the directions and the dose. Every day. For eight days. Nothing happened. Day nine, though, quite a day. A little too eventful, frankly. 

“Well,” I thought, “I will dial the tablespoon dose back a notch every day.” Which I did, over the next five days — five unfortunately equally eventful days, culminating in a day during which the half-teaspoon from the morning took a nap until four that afternoon and then greatly inconvenienced me. 

I was so inconvenienced that I went to the website to see if there was some chance I was allergic to it, or if it was made from powdered raw eggs or some other heinous ingredient. (Often, when I begin to near my Personal Best of 14 days, I start to think I could just eat a raw egg and resolve the issue, but then I worry I might explode or hemorrhage or something.)

On the website I read this Frequently Asked Question:

How many days can I use MiraLAX?
No more than 7 days. If you need to use a laxative longer than 1 week, stop use and consult your doctor.

So that’s a Catch-22. It doesn’t work at all for the first week, but on the day that puts me over the edge, that’s the day I’m supposed to stop it, and consult my doctor, and say, I suppose, “Are you trying to make me explode or hemorrhage or something?” So, in effect, in a weekly schedule again.

So, I find myself back where I was. Where I was is fine with me. 

Teeth

Wednesday, I was envying the teeth on Kamala Harris. What a smile. Joe has a good smile too. 

As usual, I dreamed of the day all my teeth would fall out and I can get the implants where they build a metal scaffold in your jaws and attach permanent fake teeth. No breast implants for me: dental implants will be my version of the boob job. 

But, this time, a problem occurred to me. It wouldn’t usually have thought of it, but because I had a neurologist visit the next day, I thought, “I wonder if you can get an MRI of the brain if you have all that metal in your jaw?” I have to take off earrings, glasses, hair clips, because the metal will affect the image. 

I asked the neurologist the next day, and he said, “Braces, those don’t work out so well, but implants might work.” 

This made me think of an adolescent with braces slamming up to the top of the MRI when the magnet turns on. Would that happen to me? To Joe Biden? You know he has that aneurysm.

Later, I read that implants aren’t made of ferromagnetic material, so they won’t come flying out of your head and injure you.

But, even if the MRI won’t hurt you, will you still get a good image with the titanium in there?

No. No you can’t.

So, there you are. Ah well. I need to double-down on the floss, then.

Viruses Are Sneaky

If viruses were people they would be sociopaths.

Polio Viruses are Vengeful - Mom got polio at 13, and died from post-polio syndrome at 71. Will Covid do the same —will the after-effects kill the survivors sixty years on? Poliomyelitis will wait to get its revenge, Covid may as well.

Cold Viruses Wear Disguises - Sure. You think you’ve got a cold. You go to work or to visit your grandparents and then boom, Grandma’s dead, or a co-worker’s baby. You didn’t have a cold, you had RSV masquerading as a cold, waiting for you to carry it to someone too old or too young or too sick to survive it.

The Virus is Calling From Inside the House - In the Sixties they discovered a virus in the brain of a man, John Cunningham. He died from a brain disease caused by that virus. They then named the virus JCV, for John Cunningham Virus. I imagine in the afterlife JC must have been pleased to have his own special virus, until they found it in someone else. And someone else. And in the water supply, and in ninety percent of human beings. Almost all people have this virus that can kill you if it gets in your brain. Luckily, most of you have a sturdy blood-brain barrier that will not allow John Cunningham entry. One nice thing about the new drug I’m taking, it seems to be the first drug with no deaths from the brain problem that killed John Cunningham: PML. I can’t think how they dodged that bullet. It’s very encouraging, though.

New Drug Day One

So, you have to titrate your way onto this new drug. “Huh,” I thought, “I didn’t have to do that with my old drug. Then again, I had to spend a day at the hospital under observation.” 

So I shrugged, and popped the first pill, which is one tenth what my final dose will be.

Then I forgot about it entirely because I had a day at work so stressful I developed a twitch in my upper lip. It wasn’t until six that it occurred to me to check if twitching is a side effect. (It is not.)

I woke up at three a.m. so hungry I had to go and raid the fridge. I ate a half cup of leftover rice and I wondered if hunger is a side effect. (It is not.)

Ten minutes later, I felt an overwhelming wave of nausea. I mean, falling-down-can’t-lift-your arms nausea. It stayed with me a hour. I checked to confirm: is nausea is the number one side effect? (It is.) 

If I get this nauseated over half a cup of rice (rice!), imagine how sick I would have been if I started off with a full dose. Why the nausea didn’t hit me as I ate my lunch of popcorn and chicken strips (again, stressful day) I can’t guess. 

Another Step Further In The Drug Transition

Well, this is exciting. I don’t have to wait months for the shingles booster shot before I start the new drug. I‘m going to start the new drug in the next few weeks. Here’s what’s going to happen:

1. I will get the Drug Delivery date.
2. One week before that date I stop taking the Gilenya. I will have a week of no drugs. I’ll still be good: Gilenya has a half life of 14 days. 
3. When the new drug arrives I put the special intro doses in the fridge. All other doses don’t go in the fridge; I don’t know why. I don’t ask why.
4. Over the next few days I gradually increase the chilled dose and then on the sixth day I take a room temperature dose.
5. My hair grows back long and lush and the nausea side-effects causes me to lose weight.

That’s my plan. 

I’m sad to say goodbye to the Gilenya, especially since it’s done well by me for so long. The really sad thing? I just had $6,300 worth of Gilenya delivered. I’m leaving it unopened, just so I can go back to it in case the new drug “disagrees” with me. Can’t forget the Copaxone Reaction.

I’m all encouraged about this new drug and the possible new disease path, because I just read a very encouraging article about secondary progressive MS.

It said this about the transition from relapsing-remitting to secondary progressive:

“If someone has mild disease you may not even notice the transition that much,” says Perumal — and, in fact, people with milder MS can be stable for years without relapses or significant worsening of symptoms.

Here I am with an absurdly mild case of MS — at least if you go by symptoms and not by MRIs. So, here is the final step of my plan (after my hair thickens up):

6. Continue to be oblivious to what goes on in my cranium.

Another Step Away from My Gilenya

Well, I am now definitely saying goodbye to my Gilenya and hello to Mayzent, which is supposedly the safer version of the same drug. It lets ones immune system bounce back if needed, and in these Dark Times one needs a good immune system.

I looked at the patient-targeted literature for this new drug, and if I recall it said something like, “this is good if you have relapsing-remitting MS” (me me!) “or if you have had a reduction in lesions” (also me ... uh-oh ... ) ‘or if you have secondary progressive MS.” (not me, I guess ... yet?) It was just a disturbing confirmation that I seem to be trudging on to the More Serious MS even though I thought the progression was stopped in its tracks. I stopped any new lesions, but evidently at my age there’s a turn, the lesions disappear, and take a little bit of brain with them. Still, you can’t deny I have fewer lesions than I might have had, so less worry about vital brain parts vanishing.

Also, the best predictor of the future is the past, and I have had a comically easy course of relapsing MS. I anticipate an equally easy coast down this new road.

Barf. Anyway, enough heroism. I just can’t stand all this positivity. Let’s get on with the bitching.

To continue my crawl toward this new drug, I needed to check off a vaccination checkbox, so today I got my first dose of the Shingrix shingles vaccine.

First off, I had to find a place to get it. Doctors’ office? No, just telemedicine. Walgreens? No, CDC says it’s not essential. I ended up getting it at Target, where there was a little CVS counter. Target. I felt like I was in a dream. “And then suddenly I was getting a vaccination but it was at Target and the pharmacist was a sheep in black underwear.”

”Oh, you should know,” the pharmacist said, after he gave me the shot, “your arm will hurt.” That was four hours ago, and I just raised my arm to scratch my head and almost fell down. I laughed uncontrollably, that’s how much it hurt, and the last time I laughed at pain was when the physical therapist tore apart my frozen shoulder. 

This how much it hurts: the side effects section for the vaccine reassures you that Shingles hurt more. “Not as bad as SHINGLES” it chirps.

“How long does this last?” I wondered. I googled. DAYS. Two DAYS. I may be distracted by the chills and fever and vomiting, though. (I swear, I just typed ‘fever’ and I started feeling hot.) I will get the same side effects after — get this — shot number two, which is scheduled for July. 

Of course, I am being a baby. It only hurts if I try to use my arm, for anything like, say, touching my face, which I don’t do, or painting, which I should do. I put off last Saturday’s painting because of the basement puddle, so next Thursday’s paint update will be thin.

I know, risk vs reward, permanent disability vs two days of arm pain, but damn. 

Drug Test on the Porch

Well, that was pretty handy.  A nurse (or possibly a technician) did come to my porch, as the neurologist promised. She was dressed in scrubs, but she wore her face mask as a necklace. I, on the other hand, wore my face mask as prescribed.

I was very impressed with the “sticker” style thermometer. The photo above shows the sticker she stuck on my forehead. After she said my temperature was 96, I tore it off and saw a green line dropping down from the 96 point to the centigrade scale. And then it faded. Like a mood ring, I suppose, in sticker form. It might be on the low side: I’m usually 97.

She did indeed draw three vials of blood, give me a retina test, and an EKG. It was not the fingertip EKG I expected, but a full-on EKG, with the little pasties on my ankles, arms, and all over my rib cage. The only difference is that the result showed on her iPad instead of a printout. Do they still have EKG printouts? I haven’t had one for ten years. Back in the day. Back in the day when they stuck one of those antique digital thermometers in your ear to take your temperature (how quaint).

I had already alerted the woman across the street that there would be some odd behavior on my porch Friday, so I wasn’t surprised to see her on her porch. I waved and she called back, “I’m here to see the show!” She didn’t watch for long, just the blood draw. She missed the EKG entirely, and that was the best part. 

I did look odd when I did the eye test. It was the test where you rest your chin outside a box and it shows you a green neon crosshair inside the box, and you can’t blink while it tickles your eyeball with air. We had to put the box on the porch bench, which meant I had to kneel and crouch low to put my face in the side of the box. and yet with the EKG and this not one neighbor on the road or walking a dog even slowed down to see what was going on.

I could have done this all inside, I suppose, but the doctor referred to it as a “porch call” - not a house call — more than once. I felt it was wrong to ask her in.

She’s been doing this since even before the pandemic, driving around specifically to MS patients. Pretty cool. I imagine it’s available for all types of tests. Are there mini portable CAT scans? MRIs? 

Doctor’s Appointments in Practice

Neurology virtual visit 

I’ll be darned: except for the reflexes, he did everything - and he mentioned he had a new patient earlier and he’d had her husband check her reflexes.

He even had me prop up my iPhone by the baseboard and watched me try to walk a straight line. 

I thought the blood work would be the big issue, but they’ll be sending a nurse out to my front porch to take my blood. In fact, she’ll be taking my blood on the porch and doing an EKG on the porch and a DNA test for a particular genotype, because that’s what’s required when Gilenya patients switch to Mayzent.

Yep, i’m switching to a different MS drug. I’m not going to be a Gilenya girl anymore. Because of the COVID, the doctor wants all his patients on the Mayzent drug instead, because if you stop it then your immune system comes back in 10 days instead of 6 weeks.

It uses the same mechanism as the Gilenya — it makes your white blood cells too fat to sneak into your brain.  Evidently the new version bulks up just one limb of the molecule instead of all the limbs, so it can go back to normal more easily. It is also used for the more serious stages of MS, so I suppose if I get worse I’ll have that going for me.

Same maker, so he thinks I’d have the same copay. I’m not sure, but I do like the idea of having a good immune system if I need it, especially these days.

Therapist virtual visit

Of course, the therapist’s visit was just about the same. I need to remember to start by asking how she’s doing. I usually forget until about three fourths of the way through and she always has massive news and I feel like a heel.

I am a little sick of talking to people, today, though.

Doctor’s Appointments in Theory

Six months ago. I scheduled my therapist and neurologist appointments for today. I usually do this so I can take a half-day sick day and not have to worry about making up the time.

Last week I planned to cancel them both so I could continue with my confinement, and at the same time I scheduled three one-hour-long work phone meetings for today.

Both doctors convinced me to switch to tele-medicine visits. This means that today I will spend six solid hours talking to people on the phone.

I am most skeptical about the neurologist “visit” translating effectively over the phone. Blood pressure test - no. Tuning fork test - no. Reflex test - no. Spasticity test - no. Touch-your-nose-touch-my-finger test - no. Blood tests - no. Cognitive and hearing tests - yes. That’s about all he can do. 

Similarly, I am skeptical about the therapist’s “visit” translating effectively, but only  because she wants to use Zoom. Have you heard about Zoom-bombing? Evidently strangers can intrude on your Zoom conference call and draw phalluses on screen. (My brother reports that AA meetings have been interrupted by people drawing bottles of vodka.)

If this happens I will hopefully have the presence of mind to get a screen grab. 

Minibrains (a reference to the two articles referenced in the link)

Somewhere I have a half-brother who has autism. This isn’t surprising. They’ve noticed that autism and MS run in families, and this article explains why.

Evidently it all comes down to bad myelin. If you don’t have the right coating around your nerve cells you’re in trouble. Myelin that’s too thick, too thin, or vulnerable to immune system attacks. Bad myelin spells trouble.

Proud to say I’m keeping my bad myelin genes to myself. Glad the neurologist’s working on re-myelination. Too late for my half-brother or me, I fear. 

 

No, Really, My Gallbladder is Fine

Recently I have had a perfect storm of predictive gallbladder symptoms: weight loss, high liver numbers, stabby little back pains. It’s understandable that I’d be sent to have my gallbladder checked out.

My gallbladder never gave me a moment’s trouble before. I expected that the ultrasound technician would reel in amazement when faced with the dazzling perfection of my gallbladder. Gary’s gallbladder famously exploded in San Francisco, my brother lost his gallbladder, my great-grandmother died because she took too much aspirin during a gallbladder attack. Happily, my gallbladder is a precise machine that dispenses exactly the required amount of gall.

Yesterday morning I got an ultrasound of my gallbladder and all of the adjacent guts. Guts are fine. Gallbladder functions like a dream. There are no stones.

There is, however, a polyp.  The office called me at work to tell me about it, but I can't recall what size they said it was. If they said 5 millimeters, then it is small. If they said 5 centimeters then it is large.

What I do know for sure is that I felt fine at work before I heard the word "polyp" -- but after that, boy, I went on a decline. My belly swelled up, my back hurt, I practically walked around doubled over and eventually I just took half a sick day. Just from hearing the word polyp! Such a baby.

Neurologist visit

I visited the neurologist this week and had some questions answered that came up last time.

Brain shadows: Just a lesion that’s being re-myelinated. (MS eats your nerve insulation, which is called myelin, so remyelination is when your myelin grows back.) I didn’t know remyelination was a thing that happens, but yes it is, and the doctor is participating in a number of studies to see if they can help it along. 

Losing lesions: I was concerned that I had fifty lesions before and now I have less, and recent studies suggested that was a bad thing, and he agreed with my husband’s rationalization that the counting isn’t exact and my rationalization that lesion load seems to have no bearing on how I feel.

Overall Health status: “You are the poster girl for Gilenya.”

Sadly, no matter how much I like Gilenya, it isn’t good for one’s immune defenses, and I’ll need better immune defenses as I get older. How old? Sixty-five or so. Only eight years away. It’s okay, there’s a drug that works the same as Gilenya, and it doesn’t tear up ones immune system as much. 

Overall, it was a good visit. It did result in another elevated test, which will lead to a gallbladder ultrasound next week, but I don’t think my gallbladder is in trouble. Of course, I don’t think my brain is in trouble either. 

 

MS Info Travels On

I was talking with a young woman recently who'd had some health problems. She's sick enough to know something's seriously wrong, just not sick enough to be diagnosed. She knows that whatever's wrong has some inflammation component, so she's looking into lupus and MS. Especially MS, she said, because of the endometriosis connection.

"Wait. What? What connection?" I said.

Turns out that kids today are all up in the latest research, beyond what I read in the MS Momentum magazine. She let me know that Endo and MS share genes and interferon cells. Here's a good, recent article.

News to me. I'm encouraged to see that research is progressing, as long as I'm not.

Public Service Announcement Part 3, in Which I'm a Little Annoyed

Sigh. Well, for a brief shining moment my pharmacy troubles were over. But now I am back where I was a year ago, with a letter from the insurance company telling me that they won't let the pricey Gilenya count toward my deductible, because I'm not the one paying for it (the co-pay assistance organization is).

It's okay: it means that the MS medicine is in a separate financial box, and is still covered up to $15,000 a year by the lovely co-pay assisstance people. In the future I pay all the parts my insurance doesn't cover (around $1,000 a month) and then that amount is reimbursed. If I had some catastrophic accident that would still satisfy my deductible. (The deductible went up 25% last year, as well.)

So, essentially, I'm in the same situation as everyone else, paying high premiums for a high deductible I will hopefully never use.

Amusingly, just with his normal medication and a colonoscopy, Gary came a few hundred dollars away from his deductible last year. I take some vindictive satisfaction in that.

And for all who say, "That's outrageous, you're still paying the money, why would the insurance company care where the money comes from," read the article on the new law in Virginia and West Virginia that make these insurance shenanigans illegal. The insurance company claims it has to do this to shine a light on the high prices charged by the drug companies.

I feel a little like a child of divorce, with Daddy Drugs and Mommy Insurance fighting over who is best as taking care of me, and I'm caught in the middle.

Public Service Announcement Part 2, in Which I'm Still Not Mad About This

I know I am the most fortunate of all of those with MS, even in the way I pay for my medication. The co-pay assistance pays my deductible, which is now $4,500 just for me, and I pay nothing. No complaints here.

Remember when Express Scripts billed my husband's Health Savings card instead charging the deductible to the co-pay assistance cards? I made a special effort to be gracious, because what am I going to do, be petty in a situation when I am clearly the beneficiary?

Well, evidently there is an additional nuance to the billing. This is how the process is supposed to go:

1. Bill any card in the family with auto-pay turned on. (Gary has turned off his auto-pay now).
2. Bill the co-pay 'pharmacy' card, which responds to the billing by paying a smidgen and then crediting the co-pay 'credit' card with the remainder. (They got as far as this step, this time.)
3. Bill the 'credit' card, which has a huge pile of money sitting on it now, as if I had accidentally sent in a $4,500 payment for a $45 credit card statement. (They skipped this step, regrettably.)

That left me with minus $4,500 in my health savings account, but at least a nice juicy $4,500 credit on my co-pay assistance card.

Of course, to understand all this I spent quite some time on the phone with the co-pay people. It was a while before I felt quite in command of the situation. I  called Express Scripts and nudged them into step 3. It was only four more days and one more phone call before everything was resolved.

What has surprised me is how pleasant I've been to everyone so far. Believe me, if this were my money alone, I would have been using the "tone" by now -- the clipped patrician tone that says my servants have been found wanting and I may send them back to the poorhouse. However, because I'm the one getting the charity (it was painful to write "co-pay assistance" above), I've been nice to everyone.

I need to remember I'm in debt to others all the time, not just when I'm getting financial assistance.

John Cleese vs the Kegels

Gary and I were sitting at the table after completing a particularly exciting stage of Mansions of Madness, when I realized I had not gotten up to pee in four hours. This is double the amount of time I usually give myself. You'd think that I'd know my bladder was full, but that nerve shorted out years ago. I might never have known, but when I stood up gravity came into play and I realized that the situation was more urgent than my bladder had let on.

Gary was in my way.

"Get out of my way."

Gary got out of  my way, because he's seen me in that hunched over bladder-clutching pose before. I began to move and realized that if I was going to make it the 15 yards to the bathroom I would have to employ The Silly Walk.

Ladies, you know. The one where you have to walk and keep your legs clamped together. The Riverdance walk. Everything above the knees is a statue. Your shins shuffle you slowly to the bathroom.

"Don't laugh at me, I have to do The Silly Walk."

For just a moment, I saw my husband's face, as he briefly considered treating me as a human being with dignity. I began to move.

Then he shrieked, "THE SILLY WALK!" and went into a rendition of John Cleese's Silly Walk.

I clamped my eyes shut. (I also used my hands and clamped my crotch shut, because the situation was beyond Kegels.)

"Stop it! I mean it!"

Then he started laughing, goose-stepping, and screaming, "Don't mention the war!" which is the funniest line from the funniest episode of Fawlty Towers.

I began to simultaneously 1) laugh 2) scream, "You little shit" and 3) pee all over myself. And I peed a  lot. My pajama bottoms were completely soaked.

"You are cleaning this up." I shouted/giggled, pointing at the growing puddle at my feet.

"Eww! No! It smells." I had asparagus at lunch.

I began to stride to the bathroom, but made a sudden swerve to give him a sloppy wet pelvic bump. He ran away.

When I was in the shower I could heard him scream as he accidentally stepped barefoot into my puddle while he was mopping it up.

A moment later he opened the shower door. I gave him a suspicious glare.

"No really," he said "I just want you to clean off my feet. I'm leaving pee footprints all over the house."

"You're cleaning those up too," I said, and I grabbed the spray nozzle shower attachment. And I sprayed off his feet.

Our eyes met. For a moment he looked grateful. Sadly, the look on my face must have given away his situation: he was fully clothed, standing in front of a humiliated woman who was armed with a shower nozzle. He only got a little damp before he closed the shower door.

 

Oh Come ON

When I first played this Mansions of Madness game at work, I didn't like it, because there was a strong fantasy Insanity element. There were various Insanity cards: Paranoia, Schizophrenia, and so on.

That hit just a little too close to home at the time. It would be as if you just got out of jail, then played Monopoly and went directly to Jail.

But, I got over it and learned to like the game. And then today I was dealt this card.

“You feel for a moment as if the strange boils and lesions have taken hold within your brain.”

I mean, really.