Queen Mediocretia of Suburbia

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.

Snare Drum Revisited

Well, the gynecologist explained the snare drum perpetually playing in my pelvis: benign fasciculations. Everyone's had an eyelid twitch: these are pelvic eyelid twitches.

And like an eyelid twitch, anxiety can set them off. I don't remember any anxiety, but I think my anxiety awareness is defective. Doctors keep telling me I have anxiety. I don't see myself as an anxious person, but perhaps that's because I compare myself with truly anxious people I know.

There's one good thing about having ones pelvis twitch, and it is not what you think. It’s that the prognosis is excellent. After seven years 50% of people polled said it got better, and only four percent said it was worse.

Speaking of the gynecologist, he has been absorbed into our Barnes-Jewish-Christian healthcare monolith. BJC is the biggest employer in Saint Louis, bigger even than Boeing.

In the 1990's Barnes Hospital merged with Jewish Hospital, then they linked up with the two North County Christian Hospitals, forming BJC Healthcare from Barnes Hospital, Jewish Hospital, and Christian Hospital.

I remember how pre-merger, Mom (and perhaps all Saint Louisans) referred to Barnes. When Mom when to Barnes for her back surgery, she referred to it as the Atheist Hospital, because it was not Jewish or Christian.

Neuro Visit

There are two things I didn't mention about my recent neurologist visit.

First, he told me there is some upstart new MS drug that is very similar to my current drug, but with fewer side effects. Namely: if you find yourself with an urgent need for a fully-functioning immune system, you'd be better off with this new drug.

I find myself irrationally loyal to my drug, since I was in the clinical trial. (If you use Gilenya, look at the side effects and find "Weight gain." I put that there.) I told the doctor I would stick to my current drug, thank you, given that it is still working so well for me.

That leads to the second thing, which happened when he pulled up my MRI. I was prepared for The Counting of the Lesions, which you know delights me, especially since I seem to have fewer lesions now. Seven years ago it was fifty, last time it was 35 or so.

This time, he did a side-by-side comparison of my two most recent MRIs, the better to show how my disease has not progressed. In the midst of pointing out that I had no new lesions, he said, "And you have this shadow on your cerebellum, but you had that last year too. See here?" And I saw that oh, a third of my left cerebellum was paler than the rest, on both MRIs.

"Oh, I see," I said. I nodded.

About eight hours later I said, "Wait. What now?"

Perhaps it took me eight hours to react because it took that long to remember that the cerebellum is a vital part of my brain (and I remember that from junior high because it almost has "Ellen" in its name). Not as vital as my brain stem, which still looks pretty good. Perhaps I was unperturbed  because the shadow was there for two MRIs and the person who typed up the MRI report didn't comment on it either time. Or maybe I don't know what a brain shadow is. I'd be concerned if I had a big fat lesion taking up a third of my left cerebellum. A shadow? Who knows what that is. It's odd they call it a shadow, since it's paler, but I suppose MRIs are like a photographic negative.

After a few minutes of mulling if I should be upset about this news I ran it past Gary, and as soon as he said, "WHAT DO YOU MEAN YOU HAVE A BRAIN SHADOW" I realized why I wasn't more concerned. If I had a normal brain I'd be dismayed, but I've got what amounts to a brain full of 30 plus pimples and I've been told I have a rash. More of the same.

So I'm cool now, I just have a little shade on my lizard brain.  I am at the point that I keep singing, "I'm being followed by a brain shadow, brain shadow brain shadow. Leaping and hopping on a brain shadow."

Snare Drum

I was sitting in the balcony at Powell Hall, listening to the Messiah last Christmas, when I asked Anne, "Do you feel that? Is this entire row of seats vibrating like the balcony's about to collapse?"

"Not that I've noticed," she said, calmly.

At intermission I walked about and was able to report that either the entirety of Powell Hall was vibrating or that it was just me having some type of internal episode.

***********

A few weeks ago at the end of the Apollo 11 documentary I noticed that the vibrations were back in force — there was a snare drum in my pelvis playing a drum roll.

**********

The next week I was leaning forward in the computer chair, and the vibrations felt like my heartbeat was in my belly, only racing and thready. I remembered that my grandmother died from an abdominal aortic aneurysm.

(Had I not taken that anxiety tangent, I would have gone to the Google instead and found out that internal vibrations are common, and caused by - hello - anxiety and - hello - Multiple Sclerosis.)

But instead of Googling, I thought of Grandma and used the computer to make an appointment with my GP. (Under "symptoms" I really did report there was a snare drum in my pelvis.)

**********

The night before my appointment, Gary and I finally Googled my symptom. Neither of us found aortic aneurysm: instead he found uterine cancer and I found anxiety and (after I searched the exact words "internal tremor") MS. Of course, we found these things after it was too late to cancel with the GP.

**********

Keeping the appointment seemed reasonable the night before, yet the next day while I was driving to see the GP it seemed like a really bad idea. I kept rehearsing what I would say to him, but there was just no way to say, "I am suffering from Abdominal Drumming" without sounding nuts.

So, when the nurse knitted her brow and said, "I have no record of any appointment for you," I leaned forward, poked my finger at her and said, "YES. Keep it that way."

"I can look to see - "

"NO. I was never here," and poof, like that, I was gone. When I got back to the car I discovered I was a week early, and as such had plenty of time to cancel, which I did.

I have a neurologist visit early next month. I might mention it there. Now that I've been tracking it the last few days, it seems to be simply the excitement my guts feel when I supply them with fiber. Apples and salad make my belly's heart race.

Public Service Announcement

This is a public service announcement.

If you have an expensive drug, a high insurance deductible, a mail order specialty pharmacy, a very nice Co-pay assistance program, and a health savings account, know one thing.

This is the order of billing:

1. First billed: Your husband’s HSA card, because it is on auto-pay.

2. Then they bill: Anything else.

Even if you say, “Be sure to put any payments on the two co-pay assistance cards, and don’t touch the HSA.” Doesn’t matter, because you explained that to the human, but the computer does the billing, and the computer taps into the auto pay card immediately, even if it is your husband’s card used for his dinky little non-specialty stuff.

Luckily Gary did something that caused me to look at the HSA and I discovered to my horror that my year’s deductible had been sucked out of there (instead of handed over to the co-pay program). I spoke to a very nice man at Express Scripts pharmacy and he explained that auto-pay doesn’t play well with others.

I would have been very calm and mindful, but regrettably this happened after Gary got me up at one am with a false alarm saying that he had lost his medicine. Happily, he found his meds, I found the deductible issue, and everything got straightened out eventually after one sleepless night. 

I’m trying to turn this into a positive by raising awareness of the evil that is the auto-pay pharmacy card. FYI.

Pie of Lies

When I was diagnosed twenty years ago someone, probably my neurologist, drew a pie chart that showed that when diagnosed, 10% of people with MS have the mild kind, 40% have the relapsing-remitting kind, and half have the progressive kind. I was in the 40%. "Cool," I thought. Already, I was winning.

Then, he divided my 40% pie slice in half, to show that only 50% of my type would jump slices to the progressive slice of the pie. I had already dismissed the bad side of the pie, so I saw this:

"Well, that's nothing to worry about," I thought. Tiny slice of bad news.  I was comforted to see my impending doom sliced up into manageable bits.

Of course, at the time I was actively brain-damaged, and did not recognize this for the Jedi mind trick that it was, and I can't even say that I let go of that pie chart memory until last month, when I tried to find it for a co-worker with a newly-diagnosed friend. I looked for it on the MS Society website, where they do not have my interactive, diminishing pie chart. Instead, they have many disheartening line charts, with lines that go up and do not come all the way back down like I have always assumed they do. 

Since I saw that pie chart years ago, my MS has taken a ridiculously easy course. Only two relapses and then stopped in its tracks by the Gilenya. No relapses for eleven years. Bye, bye, MS Progressive Pie. 

I am not looking at those line charts again, because while I realize now that the pie is a lie, it still comforts me. It’s a sugar pie, made of placebos, I guess, and we know that placebos still work, even when you know they’re a lie.

This Has Not Happened In Years

At the start of this month, on Groundhog Day, this miracle happened:

My Fitbit said I slept over seven and a half hours WITHOUT WAKING UP TO PEE.

I don't know how I did it, though. I ate and drank normally. It was truly miraculous.

Since then I have not had more than two hours of uninterrupted sleep a night, but it was nice to have a normal bladder, briefly, just for the holiday.

Then, last week, I made it to six and a half hours without waking up. 

Last night, who knows how long I could have made it. Unfortunately, at 2 a.m. Gary came in and woke me up. “Ellen ... Ellen ... Ellen!”

”What is it?” 

“The metal bowl was delivered. I just looked at the porch when I was locking up and it’s here!”

(Long pause.) “You woke me up to tell me a package you ordered is on the porch?”

”Well ... the pears came too.”

And now it’s 5 a.m and I’ve been awake since then.

Massage

Years ago I got a back massage, and the masseuse was disappointed to find only one knot. I understand that knots are permanently flexed muscle.

The only other massage I had was when I had to go get my vagina massaged at physical therapy because it was just all jacked up. 

Well, it would seem I no longer carry my tension in my vagina. I complained to my doctor that my shoulder blade, at times, is in sickening pain, and after investigating he said I was all knotted up. (Diagnosis: Knots.) I was glad to hear it. 

I told him about the one knot from years before. He said he could feel four knots, and that I need to get a massage. Not by a chiropractor, just a regular massage. 

Stupid body. Just can't deal with stress. If it isn't brain lesions, it's shoulder knots.

Now, after that Gary did unearth the Thumper, and applied it to my shoulder blade, until it just hurt way too much. Still today, I made an appointment for a massage.

The masseuse reported finding ... “one tiny knot.” 

So that means either I can save a lot of money on massages by having Gary beat me up with the Thumper instead, or the shoulder pain is something else. I vote for the Thumper Cure.

Health News Bullets

• Miraculous News:  I got my scheduled MRI and the doctor messaged me later that day, "Great news! Your MRI is unchanged."  Great news? I say miraculous.
• Vein News: While getting the MRI, I found out that my right elbow vein is "scarred" from too many punctures. Like a heroin addict! So flamboyant!
  
  
• Drug News: Miraculous drug is still on my credit card. It looks like it'll be a month before I can get all the paperwork straight and I can get reimbursed. Next time I'm sure I'll be faster.
  
  
• Urine News: I could swear I get up four times a night to pee. The FitBit assures me I only get up once a night on average. Maybe a few times a week I'll get upo two or three times. There was only once I went every two hours. All I can think is I am dreaming that I am getting up, or that I am gliding into the bathroom so smoothly the FitBit doesn't register it.
  
  
• Bug News: Remember how my first MS drug, Avonex, was made in the ovaries of Dwarf Chinese Hamsters? The Miracle drug is made from my favorite bug: Cicadas! If I continue taking it will I have sex once every 17 years? I am on track.

 

A New Name

Well, there is some good that came out of the bladder infection that arose after the last post.

First, Gary no longer feels that his dirty, dirty organ is causing the bladder infections, given that a fresh-from-the-box silicone toy cocked everything up this time. He's now blaming my dirty, dirty bladder, and even says the MS nerves are to blame for not voiding that puddle of stagnant pee.

Second, when I finally landed in the ER last night, the staff said that "prescribing" myself my six-year-old antibiotics was a good call. I was astonished. I fully anticipated a lecture about expired drugs, and not taking a full course, and did you go to medical school. Not so. Not a bad idea, they said. Of course, it only bought me a few days. When the infection rose again I was willing to gut it out until I saw the actual flecks of bloody flesh accumulating in the commode.

Thats what got me the nickname. I heard the nursing station say the words "pink pee" a few times. "Pink pee!" I thought, "I bet that's my pee!" Because it was a lovlely shade of magnolia pink, like an eighties carpet. Then I realized Pink Pee was me. "Chest Pain is waiting on his labs, Pink Pee's resting comfortably."

I kind of like that level of familiarity now. Just this morning at my mammogram (it was a day bookended by hospital visits), the nurse took hold of my breast and tugged on it to move me over a half step. It made me laugh. A few years ago I would have found that degrading. Now I have no airs. My breast is a meat handle; I am Pink Pee.