Queen Mediocretia of Suburbia

Shot Five

Got shot five in Wednesday night.

Pharmacist said this might be it for this card. She doesn't know next steps.

 

Yet Another Mystery Solved

Last month I lost the debit card for my health savings account.

I imagine a lot of people did. This month the cashier at the drive through said, "I'm putting your card in this little white envelope and stapling it to the bag so you won't lose it."

Yes? You mean the bag that has so much other detritus stapled to it that I open the bag from the bottom to extract the meds before I throw the mess into the trash without touching it? 

So, lesson learned. If you lost a card, that's where it was, in the little white envelope stapled to the receipt and the warnings and documentation. 

Test

I have been trying to model responsible health behaviors for Gary, and to that end (ahem), I am testing for colon cancer. 

This time: no prep, no sedative: I am using the Poop it -> Mail it -> Test it Cologuard test. 

I expected these supplies: a microscope slide, a wooden collection stick, and a durable envelope. That's what I was expecting.

What I got was a pressure cooker.

Evidently they expect that one makes a deposit directly into the pressure cooker. There is a maximum size but not a minimum size, so that's going to be difficult to judge. There's some other stuff to do, some alchemy with chemicals,  and then it all goes back in the box and is sent off to the lab. 

Sadly, it turns out Gary can't do it at all, because he had a pre-cancerous polyp before, but I can. I can't do it yet, because Memorial Day might slow the shipment, but once that's over then the scat is in the mail.  

Will it be preferable to a colonoscopy? Has to be, right? Turns out Gary finds all this manipulation so distasteful that it's mentally prepared him for his colonoscopy in 2023, so I've done my job. 

UPDATED: Neurologist visit

So excited to have seen the neurologist Thursday, because I heard Evusheld and Plaxovid are finally available to the general immunocompromised public, and I knew one of them could act as an effective vaccine, and if so I would like some, please.

I have already forgotten which one is pre-infection and which is post-infection, but it doesn't matter: I can't take it because it causes heart problems. You say, "But what if your heart test Monday is fine?" Won't matter then either, because my high cholesterol disqualifies me. "But what if the statins lower your cholesterol?" Well, maybe, I guess, but opera season will be over by then. And really, I'm around other people more vulnerable than I am, when it comes right down to it, so I have to stay vigilant anyway.

So nothing like a vaccine for me. My white blood cells are high, but the infection-fighting part of the equation is still low.

But, I was relieved to find that the potential cardiac problem will not disqualify me from taking the Mayzent pills, because any potential cardiac problem would have got me early on. 

The final bit of news was very germane: the best diet for MS has proven to be the Mediterranean diet, which I switched to two weeks ago when my left chest began to hurt. Supposedly the key factor is the olive oil. The last person I heard sing the praises of olive oil is dead now, of course. 

Also, last time I saw the doctor none of his other MS patients had died, this time seven have died, all but one unvaccinated. (And the one had other health issues.).

That's the update, folks, stuck inside for the summer: second verse, same as the first.

==========

UPDATE: I had a stress test and my heart looks "excellent," so that's part of the battle won. Now just a good cholesterol test and I can get what passes for a vaccine. 

Calcium, Vitamin D, Which Came First?

Well, blood numbers came back for my physical, and they are wonky. The Dread Wonky Numbers.

Really, only two are wonky: the calcium and the vitamin D. Or the vitamin D and the calcium, which may seem like the same thing, but it is not.

The vitamin D levels may have increased for no reason, and that may have increased the calcium as well because they are related, and the calcium is what regulates your heart, so that all fits. Vitamin D --> Calcium --> heart. Easy fix. Take less vitamin D.

Or, the calcium levels may have increased for no reason CANCER, and the calcium is what regulates your heart, and the calcium may have increased the vitamin D as well because they are related, so that all fits. Calcium --> heart and Vitamin D. Hard fix. Deal with the cancer. A less likely sequence, but then factor in that my white blood cells have shot up to the middle of normal range. Or, maybe the boosters have boosted everything but my lymphocytes, which are still pitiful.

I was half asleep when I did the Google search that brought me to these conclusions. It is entirely possible that those two overages are so minimal that it could be my change in diet. I truly don't know. I was just pleased that I found the calcium / heart connection, and that all the numbers contributed to a solution, instead of a mystery.

So it's a chicken / egg / cardiac conundrum. I'll know later this month, though.

Heart Update

Well, the heart doctor appointment had three results:

1. He scheduled an echocardiogram and a stress test for two weeks away, which suggests to me I don't urgently need an echocardiogram and a stress test.
2. He isn't too terribly concerned about the EKG, which surprises me, because I was under the impression that is why I was there.
3. He is terribly concerned about my cholesterol and impressed on me my need for cholesterol-lowering statins. He was appalled, appalled I tell you, by my LDL numbers. Normal is 100, my LDL is 181. Evidently, 190 is when things get very, very bad.

I filled the statin prescription. I will alert the GP and the neurologist, both conveniently scheduled in the next few weeks.

What I anticipate hearing from the GP is that the MS drugs skew the liver numbers, and bad liver numbers might mask any liver damage from side effects of statins.  

What I anticipate hearing from the neurologist is that statins are good for MS. Every quarter when I fill out my MS questionnaire they quiz me about statins. People on statins have less brain loss in MS; they don't know why. They've even started a Phase 3 clinical trial about it.

Right now I'm leaning pro-statin, obviously, but I need more info.

Qs and Rs and Other Waves

At some point last month I put my left hand against the headboard behind my head and pushed. (You know that move, you've done that move, I am not ashamed.) A few days later I noticed some mild pain in my left armpit. I figured I had pulled my chest muscle. 

Only, a pulled muscle would get better, this pain got worse and kind of marched across my left chest to my sternum over the next few weeks.

I picked out my own working diagnosis, as you do, and I was pretty certain the doctor would say "pericarditis," and I'd feel better just from that. 

But instead the doctor said, "EKG," and then, "see this wave and that spike," to which I said, "Someone saw similar waves in 2020," and now I have an appointment with the cardiologist next week.

Much of what I read about my EKG "echoes" one thing the doctor said, which is that I might have previously had a heart attack. This seems impossible. No heart attacks, minor or major. Not unless I'm one of those pets that can sneeze itself into a heart attack. 

This is not anything I need right now, that's for sure.

A Review: Whatever Happened to Baby Jane

I watched that Feud miniseries about the making of Whatever Happened to Baby Jane, and that was sufficient for me. Never needed to see the real movie. 

Gary said it was a terrific film, and he wanted to re-watch it. Sure, I said.

I made it as far as when Baby Jane tosses the "Call the authorities! Don't tell my sister!" note back in the lap of the wheelchair-bound sister, and then I said, "What is wrong with you that you would want to watch even a minute of this sick, horrible movie?" Then I stomped off. He yelled at me that I was weak.

It did take about ten minutes of sulking to realize why a movie about an older woman in, say, her sixties (me in five months), who is trapped in a wheelchair (me in ten years) at the mercy of her mentally ill sibling (me, never, I hope) might not be my favorite.

Seriously, if I had a pet bird like Sister Maude, this movie would be custom-made for my anxiety. 

Cavuto News

If you are curious, read Fox News anchor Neil Cavuto's experience with MS and Covid.

It's encouraging that he didn't die, and that his doctors think his vaccines and boosters did some good, though I don't see them quantifying it. 

I would think if there were anything that might make one come to Jesus and disavow one's slimy employer it would be 5 weeks fighting for your life in the ICU, but evidently not. 

Walgreens Super Bowl Vaccine Appointment

So, there I was, at the Walgreens, ready for my fourth vaccine. I walked in, there were about ten people in the whole store and they were all at the register. Fine, because I was headed back to the pharmacy.

The entirely closed, shuttered pharmacy.

The sign showing that pharmacy was "open'' was right next to the metal grate locked down over the counter.

I found an employee who said their pharmacist was "out," so they had a temp who left already, and they were going to reschedule all the appointments. 

WHAT IS THIS BULLSHIT, I thought, and I said "Well, okay then, see you later."

But I will not see you later, Walgreens. I will not. I felt pretty comfortable out and about so now I'm trying the grocery store tonight at 7:00 pm. And they better not have any of these shenanigans.

Seriously, Quit Changing the Rules

I was supposed to get vaccine shot #4 five months after my third, so on January 17. But I delayed my fourth booster to get past the omicron surge. When I get it Super Bowl Sunday I will be one month behind.

Right?

But no. As of last Saturday the CDC said, "Move that fourth shot up. Get it three months after your third shot."

So now I'm three months behind according to this new time table. Tiresome. I wonder if I can argue I should get an extra shot because it's been six months since my third shot, and if we are now doing a shot every three months I should get two.

I'm just waiting for Paxlovid (or as  NPR calls it, "hope") to come out, at which point  they will tell me I can't take it if I've had a booster in the last year of some such nonsense. 

(Actually no, I'm happy and grateful for anything.)

Okay, I Am Really Getting the Extra Vaccine this Time, Start the Clock, Honest.

Gary has been infuriating me by insisting the environment in which I get the vaccine will be perfectly safe, and even more infuriating, that at his advanced age of 68 he is just as immune-compromised as I am. I just sent him this:

Seriously, dude. I have Facts and Charts. Also, it is pitiful my husband and I are both so starved for mutual sympathy that we are arguing over who has the worse immune system.

What is most infuriating (to total three infuriating things) is that we had this conversation:

"Hey Gary, I signed up for the vaccine."

"I DON'T WANT TO HEAR ABOUT IT YOU HAVE TO GET THE VACCINE."

"But I -- "

"THERE IS NOTHING THAT PUTS YOU AT RISK YOU ARE JUST STANDING IN LINE AT WALGREENS FOR GOD'S SAKE."

"But I will -- "

(Mutters) "You are being a baby about this."

So, as I tried to tell him, I signed up for my fourth useless vaccine on the last appointment available during SuperBowl Sunday. Hoping it's pretty quiet at the Walgreens. 

Stress Breathing

In the past when I was stressed my right hand would tingle.

But then as I found out during my brother's health scare last October, big stresses make my entire left leg tingle even more.

My other stress indicator is that I can't draw a deep breath. However, I can gasp just fine. Usually this is how I fix it:

1. I wait till I have a doctor's appointment about something else,
2. I say I am having trouble with shortness of breath.
3. They say "Are you under any kind of stress?"
4. I say "yes."
5. It goes away on the drive home.

I don't know if it only works with doctors, so I am telling you all: I have a little pile-up of three mild stress situations. There. That should cure it. 

Stop the Clock

Well, the plan was to jump right on that fourth vaccine shot. Nope. Not doing it. Not right now.

I called four places near me and half of them did not know about the fourth shot, and the rest said they were only giving first, second, and third shots.

No website has been adjusted, of course, they all ask me if I'm getting dose 1,2 or 3. It's fast to change a website, just not if it's a corporate site. Testing has to be done by committee, phrasing has to be negotiated by committee.

I called the hospital system downtown, and they were aware of the fourth shot, so that was a step up, and then I had to decide if there was a safe place to get the shot ... but there isn't. No drive ups anywhere. Appointments, yes, but appointments in auditoriums.

So, I decided to not decide - just stay in my bubble and then next month, hold my breath and go out to one of the smaller hospital locations. 

But then, another person at work died. I don't know his vaccination status or his immunization status, but now I am even more afraid of the 'cron. The problem is, should I be so afraid of Omicron that I get the vaccine, or so afraid of Omicron that I avoid leaving the house? I don't know which. Pause the clock for a month, then, and wait for any surges to die down. That;s my current "plan."

Nurse Blake

Remember when I bought my Kinsa crowdsourcing thermometer it came with this Nurse Blake  character, who might have been a bot?

A new email has arrived and, big news, there's a Mr. Nurse Blake, and he has Covid. There's a link in the email teasing the story, then you take a link from that second page to the details. I think this is all a ploy to see the depth of our relationships to Nurse Blake. 

Upon reading the article I realized Nurse Blake might benefit from my neighbor's experience: her husband and child got the Omicron while being fully vaccinated and boosted and masked. Luckily, with the Omicron we decided to stop being in the same room, we now holler from one back door to another. 

(And yet, amid all this caution, the Supreme Court has decided that no one is their brother's keeper, and we shall have no mask or vaccine mandates.)

Interesting to me that my new bestie Blake would be out there sharing her experience, and that it would not be followed by a disclaimer like "the opinions of Nurse Blake are her own and are not shared by the management."

Start the Clock

MSNBC teased me with this news and then never delivered. I had to hunt this down. 

"Moderately to severely immunocompromised people can get another shot if it's been at least five months since their last one."



Per the CDC site:

Who Is Moderately or Severely Immunocompromised?

People are considered to be moderately or severely immunocompromised if they have:

• • Been receiving active cancer treatment for tumors or cancers of the blood
  • Received an organ transplant and are taking medicine to suppress the immune system
  • Received a stem cell transplant within the last 2 years or are taking medicine to suppress the immune system
  • Moderate or severe primary immunodeficiency (such as DiGeorge syndrome, Wiskott-Aldrich syndrome)
  • Advanced or untreated HIV infection
  • Active treatment with high-dose corticosteroids or other drugs that may suppress your immune response

(Counts on fingers) January 17 is my five-month mark. 

Agoraphobia

I don't know anything about the condition of agoraphobia. I know my Mom felt that "Aunt" Carleen's agoraphobia might improve if she just got out of her apartment once in a while. (I'm almost certain Mom was being facetious.)

I can guess that there's a chemical catalyst behind agoraphobia. I suppose someday they'll find the chemical behind every mental illness, and they'll drop the "phobia" suffix from every phobia, and therapists will just treat neurosis. Or is that day here already and I'm just operating off old assumptions?)

At any rate, I can tell you that my body's chemistry has a strong agoraphobic reaction to the prospect of leaving the house. Since the pandemic, I rarely go out. When I do leave the house it's only for sterile locations like the hospital, with a few exceptions like the all-night pharmacy.  Still, every time I leave the house my body reacts.Without fail, the prospect of leaving the house wakes up my lower intestine.

"She's leaving!" it shouts. "Time to bug out! Pump up the serotonin! Move out! Evacuate!"'

I'm not exaggerating: it's every damn time, to the degree that I will put on the shoes and bra and fake out my digestion an hour ahead of my estimated departure time so it has a chance to drop ballast. It's like a very, very specific panic attack.  

I hope this doesn't continue after the pandemic.

Nervy

In the last week I have been encouraged to kill off some of my nerves. I don't like it.

I understand why people kill their nerves if the nerves do nothing but cause them pain, but I have to assume those people have nerves to spare. My nerves, on the other hand, are coated with  a tasty layer of fatty myelin that my immune system cannot help but nibble on, so I have no nerves to spare.

I went ahead with the root canal, killing off the nerve for that lower half of my tooth, because there was no other option given. I suppose killing the nerve was just a side effect of routing out the infected canal in the root. 

On the other hand, I know someone who will be killing off some nerves in his spine. He has  severe spinal stenosis, whereas mine is only moderate. He is opting for nerve ablation to kill off his offending spinal nerves. There is not a chance in hell I will do that. I need all my spinal nerves to act as decoys for my few essential spinal nerves, the big boys, the ones I can't lose. I need those to walk, plus the bowel, bladder, and arm nerves. I don't know what I'll think after a few years of spine problems, though. 

Updated: Immunocompromised News is Less Exciting than First Thought

Well, I have read some more about this Covid solution for the immunocompromised and evidently there was one thing I misunderstood about the new protections.

I thought when they said it was "prophylactic" that you would take it to protect yourself before you stepped out in the world.

Now I see that "The treatment ... can only be issued after a person has been exposed to the coronavirus. (This means you can’t take it without knowing you’ve been exposed to the virus, say, because a close contact, such as someone in your household, has become infected.)"

Seriously? My first instinct is to go nuzzle with some Covid-infected person so that I can go to the hospital and get a massive dose, six times higher than normal. Then I suppose I would have to marry the infected person so he'd be a "household member," but then I could get the meds and eat at a restaurant and go on vacation.

I will not be the only one who feels this way.  This is a bad idea.

+==========

UPDATE; I am wrong. I am confusing two separate "prophylactic" measures, the one authorized on Dec 8th and another one. The AstraZeneca one authorized on the 8th is truly protective and doesn't require exposure -- unless you need to make a case for it, which you will, because there isn't nearly enough of it.

Covid Antibody Treatment for the Immune-suppressed

I am dismayed that I keep hearing Breaking Vaccine News for the Immunosuppressed from the Late Show. (Evocative of Garrett Morris and News for the Hard of Hearing from early SNL.)

If you didn't hear, they will be giving a year's mega-dose of monoclonal antibodies to those of us who are essentially immune to the vaccine. Like a  year's worth of preemptive monoclonal antibodies. You can see all about it in the video below --Two minutes and 50 seconds in.

I showed it to Gary and he was still skeptical. 

 

Toothache

I got a toothache back in October. Felt wobbly, like it was coming out. It shifted enough to mess up my bite.

Gary went to the dentist around that same time, came home  and announced: "THEY HAVE A NEW MACHINE THAT SHOWS YOU WHAT TEETH ARE DEAD I HAVE TWO DEAD TEETH YOU HAVE TO GO TO THE DENTIST."

I preferred to paint my tooth with Ora-jel, and in a few days it was fine. However, two weeks after that it was wiggly and painful again. And it was odd, I had that stiff neck and I thought maybe it was inflamed and that inflammation spread to my jaw and then my tooth, on the way to its ultimate destination: my brain. 

"YOU HAVE TO GO TO THE DENTIST YOUR TEETH ARE DYING YOU NEED ANTIBIOTICS AND A ROOT CANAL AND ANTIBIOTICS LIKE ME."

So I went yesterday. The dentist used the tooth-diagnosing machine (as we call it in our house, THE DEATH MACHINE) and diagnosed me with A DEAD TOOTH. Not as dead as Gary's, but on its way, and her said I need a root canal and antibiotics. 

I even let my skepticism show to the dentist. "Really? Gary and I both have the exact same problem?" He said it wasn't unheard of. 

So, my first root canal. I don't know how this resurrects the teeth, but it ... it can't hurt. Right?

Up the Nose

So TeddyJ is considering how to protect everyone against the virus. They have mentioned requiring vaccination proof or a weekly nasal test. I don't know if this is because of Biden's new OSHA requirements or if it's independent. Recently a judge put the OSHA requirements on hold so this all may be moot.

If not, I hope this works. I also hope they consider all the immune-compromised people walking around fully vaccinated who could still spread the virus to each other, like me, and more important, like this woman going through chemo who had to fight off a bear who was rooting around in her freezer.

What if the bear-wrestler woman and I encounter each other somehow? What if I meet with a TeddyJ employee who is going through chemo?  I might have gotten all my doses but still have scant antibodies and therefore vulnerable and infectious.

I kind of hope TeddyJ will start thinking about this in detail in the next few months. Or do I?The immunocompromised are only 3 percent of the population. So that means 2 of every hundred people I meet at the office could be a threat. Is that enough to worry about? I have no idea. The virus didn't infect over 5% even at its worst. What's five percent of 3? 0.15? So not even twenty percent of one person? 

Maybe it's not a problem until I am walking on the road and meet this bear-fighting woman and one of the 50% unvaccinated in my county. What are my odds then? Seriously, I never thought my inability to calculate a percentage would be hazardous to my health.

Booster Booster!

Start counting, because the CDC says that in February I get another Covid shot. Of course, I have to assume this one will also do no good. How would a person know if they had any immunity? You don't know. Four shots and no safety. Still staying in.

I am a little ashamed to say I heard about this 6 minutes and 14 seconds in to the Late Show monologue.

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.