Queen Mediocretia of Suburbia

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.

Mental / Physical Health

Mental Health. Remarkably, I'm now a convert to mindfulness and meditation. The last time I went on a walk I noticed that I was dwelling on the negative (losing Gary) and re-directed my thoughts to where I would live if I lost Gary (a warehouse loft that would look empty until I pushed a button and then tiny-house-style beds would drop down, origami-like sofas would emerge, tables would rise from the floor and yellow and white furninishings would unfold from all sides. Kind of like the end of Pillow Talk, but color-coordinated.)  It's like I've won my Superego back on my side and it censors the negative instead of running a commentary on all my flaws.

Physical Health. I went for my yearly physical and two notable things happened.

First, for the first time in years I got a flu shot. I haven't gotten them in the past because of my bad reaction to raw eggs, but this year we decided to see what happens. And you know whhat? Nothing happened. I didn't end up in the bathroom. The doctor suspected that since the raw egg wasn't in my digestion, my digestion wouldn't reject it, to put it daintily.

Second, I gave a urine sample on the way out. I've given dozens - nay hundreds - of pee samples. You'd think I'd know how to do it. Usually it's without incident. For some reason this time I decided to read the directions posted on the wall. So I stood there reading the directions, unwrapped the towelettes, pulled down my pants and for some stupid reason - still standing - santized my area.

My area immediately said, "Wait? We're wiping already? I didn't even pee yet! Here, lemme catch up."

And I peed all over myself and my partially down underwear (but not my fully down pants) as I lurched over to the commode. I had intended to wipe, sit, unscrew the cap, position, and pee, but that was all happening at the same time now. Luckily I was able to fill the cup halfway, and luckily I had a zip lock bag in the car I could store my soggy underwear in.

It just occurs to me - that could have been my body rejecting the flu vaccine. Nah. Just me being dumb.

 

This Stuff Happens When You're Sick

I'm sick.

Thankfully, this sickness isn't in my chest, or my digestion. I think the day I took the photo it was in my nose. Maybe a little in my eyes. It's now full-blown conjunctivitis and it's in my ears, too. My left ear is filled with sounds of the ocean, like I have a shell permanently attached to it. This means I have three days to get better before the Art of Time concert Monday.

To that end, I've been resting up and eating orange foods and popping pills. I've taken a ridiculous assortment of sinus and cold medicines, hoping I find a magic combo that clears it all up. I think I've taken fifty pills in the last five days.

That's why it surprised me when I was standing at the kitchen sink, slapped my three daily morning pills in my mouth, and one poorly-positioned one bounced off my lip and plummeted into the garbage disposer.

I spat out the remaining two. Damnit. The one that I last was the Gilenya, the MS pill. The one that costs $210 a day. (Granted, it costs someone else $210 a day: I'm off the hook.) I stared at the garbage disposer and considered the variables.

• Do I really need a pill that kills my immune system while I'm this sick?
• More important, how recently did I run the garbage disposer?

I opted to rescue the pill. After five minutes of fishing out bits of ham, I found the pill and popped it in my mouth, thus killing off the lymphocytes that might make me better. I'm counting on my neutrophils to rally and the baby carrots I had for breakfast.

 

Brain Death

Gary's Brain

One morning this past week I saw Gary outside feeding the birds, leaned out to kiss him goodbye, shut the door, threw the deadbolt, as you do, left for work.

Gary, who was of course locked out, wandered the neighborhood. After ringing about five doorbells, he found a neighbor who let him use the land line. Gary called the only number he remembers: his parents.

Gary's parents got him in contact with his sister. His sister gave him my work phone, which he somehow misdialed. He left the neighbor's house, and his sister then drove to our house, called her husband, her husband looked up the name of my multi-national company and got a branch office, called that number, and the office administrator there looked up my number and gave that to them, as well as sending me an urgent email.

This is when you'd expect Gary to get on the phone and RAIL at me, yet he did not. He was so agreeable I should lock him out daily. I came home immediately, of course, and we made plans to write down phone numbers and hide keys.

He has done neither. Instead, I was outside this past weekend, just for a moment, and when I tried to get in the door was locked and Gary was sitting at the table, pointedly ignoring me. He read his iPad with great interest, stroking his chin, nodding at the Times while I scrabbled piteously at the door. "Let me in! Please!"

The first thing when he let me in? He ducked his head and proudly said, "Days. I have been waiting days for the chance to do that."

My Brain

Last Thursday I had a 4:30 appointment with the psychiatrist. I left well ahead of time, since I remembered that one time I got so lost at that hospital. I actually arrived at St. Luke's ten minutes early.

"Wow," I thought, "They were doing some construction the last time I was here. They really changed a lot." After trying in vain to find the doctors building, I wisely called the office.

Voice mail picked up, then added, "Our office is located at 9098 Clayton Road."

Then I remembered the doctor hasn't been at St. Luke's for six years. I have driven to that Clayton location six times and totally forgot.

Of course I arrived late. "Sorry, I'm late. I was at St. Luke's."

"Why were you at St. Luke's?" he said, concerned.

"I'm an idiot. I totally forgot you moved."

"I've never had an office at St. Luke's. I worked at St.John's - " which OF COURSE is the hospital I went to six years ago and got so lost at.

It does explain why St. Luke's looked so unfamiliar. I think I've been there once, on one of Mom's appointments. It did give us something to talk about when he asked how my MS is going ("No cognitive problems?" he asked with a little smile.)

The really sad thing is that now that he's taken me off the medication I never have to see him again. No more appointments, and here I've totally figured out where his office is.

Gary Finds This Ad Sexy

This is an ad for my MS drug. Gary finds it sexy. I find it disturbing.

Yesterday I posed with my pill  in a similar manner and he did not find it sexy at all.

Like the Universe, I Am Becoming Less Dense

In addition to my user-friendly "Your breasts are normal" mammogram letter, I also saw the cold doctor-to-doctor mammogram report.

"The present examination has been compared to prior imaging studies performed at Barnes Jewish Hospital on 06/18/2009, 10/09/2006 and 09/28/2006. The breasts are almost entirely fat."

Harsh!

"Doctor, I need a consult. Have you ever seen breasts this fat? They're almost ENTIRELY fat." I suppose they expect me to be like milk, between 2 and 4% fat. And here mine are, almost entirely fat.

Then I started to think, what are they supposed to be made of? Cartilage? Sawdust?

As it turns out, there's a breast density scale that measures the amount of fibrous tissue you have.

So, if density is a bad thing (and some think it is), then my breasts are in the 90th percentile.

What's odd is that back in 2006, my gyno told my authoritatively my breasts were dense, then later that year I needed another test because they were too fibrous. All I can think is that I've heard caffeine contributes to the problem. Maybe they've lost their edge now that I'm off the caffeine.

Of course now I want to be the first woman to go from "almost entirely fatty breasts" to "Entirely Fatty Breasts."

I've Got the Wonky Lung

Let's get this straight. I do NOT have shortness of breath. I can breathe, sustain life, I'm all pink, I have no complaints about that.

What I HAVE is a constant need to yawn without the capacity to yawn successfully. I don't know what this is called. Yawnus Interruptus? It happened ten years ago right before I took that yoga class, and the class reminded me to breathe in my belly, not my lungs.

I put all my belly into my recent attempts to yawn and it is still not enough. Here's the only way I can reliably catch a satisfying breath: I exhale everything out of my lungs, then I exhale some more, then I push down on my belly, arch my back, and then I can yawn.

I read something a few days ago about "overbreathing." Evidently a person having a panic attack feels like she can't catch her breath, because a little hyperventilation sets off some chain of events and the carbon dioxide / oxygen triggers go wonky, and it all goes south. In reality she can breathe just fine. The cure is to breathe normally, stop gasping for air, and eventually it all straightens out.

Of course, I believe this a real condition because it has just the right dismissive tone that you expect from science and reason. I think it's my condition because I like the idea that what evidences itself in others as "panic" looks like "chronic yawning" when I do it. Plus, it's supposedly triggered by holding your breath, which I did plenty of during the mammogram the day before it all started. (Mammogram is clean, btw.Go, boobz.)

Sadly, I've been trying to breathe normally for a week and a half and I still need to yawn. I stifle yawns every half hour, because that's the cure for overbreathing: ignore your body and breathe like a normal person. What I wouldn't give for a really good yawn.

Since yawning is suggestive, you just yawned while reading this. Enjoy! Pull in enough air to tip you over the edge for me, since I cannot.

Bon Mot In Waiting

Now that the news has broken that some wealthy Moms hire disabled tour guides so their kids can go to the front of the line, I can not WAIT until the MS gets me. I'll be plunked into that wheelchair and announce, "I'M GOING TO DISNEY WORLD!"

Vitamin D

Monday: No New Lesions! No! New! Lesions!

Later That Same Week: The neurologist's office called and said the results of the vitamin D test he ran were low. Low normal is 30; I am 13.

When I was first diagnosed, that doctor said they speculated MS had something to do with how vitamin D is metabolized. It made sense, because people at the equator don't get MS and they have plenty of sun, and sunshine helps you make your own D. (Sunshine makes me throw up. I always puked on float trips and camping trips. Sunshine is not "healthy" for me. Exercise makes me barf too. I see a trend.)

Anyway, at the time, that doctor said that taking extra D would not help. Perhaps they thought it was a correlation and not a cause. That was years ago. It seems that now they think that big doses of D will be beneficial.

I start off at 50,000 units once a week. It's prescription, otherwise I'd be slamming back half a bottle at a time. 

I just can't wrap my head around it. I know there was a time a few years back when everyone had the D test and everyone was low. There was a time in the 70s when vitamin C was supposed to cure cancer.

I am skeptical, but they know what they're talking about. Big Honking Doses of D seem to be recommended for people with autoimmune diseases. Okay then. I'm doing this for the 80 year old me, the one that'll have brittle bones because calcium crept out because I didn't get my vitamins.

Perhaps I'd feel better about it if they charged me 4K a month.

Fifty at Fifty

1995-2010: Over 15 years of MS, I've accumulated 50 "silent" lesions: ones that didn't result in a flare-up. That's 3.33 lesions a year. Only two of the 50 were noisy enough to break though my oblivion, so I've only been in the hospital twice. That's one active lesion every 7.5 years. That is well over the average of one every three years.

(I sound smug, don't I? Hush. You'd be pleased with yourself too. It's a stupid brain, but at least it's discreet. Evidently that's where all my discretion is hiding.)

2011-2013: So, I started 2010 with my fifty vewy-vewy-qwiet lesions. How many do I have now?: Fifty! No new lesions in 2011 or 2012.

The neurologist let me know. We did the seated happy dance together. "The drugs work!"

So, holding pat at fifty.

Then again, it is possible that lesions level out when your estrogen dries up, given that they surmise hormones and MS might be linked. Or, maybe lesions top out at fifty. Maybe they stop counting at fifty. Or maybe it's like the rings on a tree: you earn one for every year you've been alive. No, then that means I'd have been dead the last two years because NO NEW LESIONS.

Duuuuude.

I didn't even know there was a sublingual pot spray for MS. And now I can't use it. Damn.

LONDON (Reuters) - There is little evidence to back the use of a cannabis extract spray made by GW Pharmaceuticals for spasticity in patients with multiple sclerosis, according to a... report in the Drug and Therapeutics Bulletin (DTB).

Sativex is sold as a prescription drug in Britain by GW's partner, German group Bayer.

Well, it's for spasticity, so I couldn't use it anyway. If I hadn't fixed that frozen shoulder I might have passed that off as spasticity.

GW Pharma said the article contradicted the opinion of 22 separate national authorities in Europe and around the world that have granted approval for Sativex. ... The drug is currently sold in Britain, Germany, Spain, Denmark, Norway, Canada and Israel.

Can you imagine? Pot, but you don't have to smoke it or ruin a good batch of brownies.

Evidently I Am Weird

An odd thing happened in Physical Therapy today.

I was negotiating with the PT, because now that I'm on my third physical therapist I've found out what works for me. I like the numbers.

How many of these stretches will you be doing? Five sets of three? Fine.

Will you give me a three second warning? Yes? Good.

And I get to count how long it takes, not you. I'll count to twenty, then we'll rest, right? Thirty? Twenty five. Okay, thirty, but I'll tell you when I'm done resting.

So we got it all worked out so there were no surprises, and then on the first round he decided to increase the pressure every ten seconds. Fine. FINE. Just as long as I know what's coming.

We did fifteen sets of thirty seconds. For the second to last one, he pushed really hard the last ten seconds. I was squirming in pain already, and then he pushed more, and it got so ridiculously painful I laughed for the next ten seconds.

For the last time, he did it again, and I laughed uncontrollably again, along with some uncontrollable cursing.

WHO LAUGHS AT PAIN? I DO, evidently.

I looked it up and it seems common. Women report laughing during childbirth. I've never laughed at intense pain before. I've laughed at Gary's intense pain, of course, but never my own. It wasn't funny at all, it was painful, but so absurdly painful I laughed. Like a Nazi or something.

Here's the upside: on the last one I was counting my three sets of ten, and the PT claims I counted "nine ten eleven one two..." So that means I get a credit of one second on Friday.

Looks Like I Picked the Wrong Week to ...

Early last week, I decided to cut my Celexa in half yet again.

Last Wednesday I came home and cranked it back to where it had been.

This Tuesday I took an extra pill.

And now they're saying Obama lost the debate?

Looks like I picked the wrong week to cut back on my Celexa.

Shoulder

Have I mentioned my shoulder hurts?

Well, it does. I decided that it might be tendonitis and that the cure would be to ignore it.

Soooo .... that was six months ago.

It got worse, so I headed to see the GP this week. He pushed my arm all about and said,

"You have a torn rotator cuff ..."

(I've have a torn rotator cuff before, from an ill-advised reach into the car's back seat, but it went away with rest and relaxation.)

"... but since you've had this so long I'm afraid you'll need to go to physical therapy."

(I've been to physical therapy before for ... an unrelated issue. You remember.)

I began to laugh at my memory of my pelvic floor PT, and the doctor caught on and said, "Yes, make sure they stay in the shoulder area." He kills me.

Well, arm therapy started today, and it was painful yet interesting. It would seem I have rested and relaxed my way into a frozen shoulder. The "Ignore Your Body" dictum that has served me so well with my MS has been my undoing. So first, to thaw my shoulder (I don't know if that's what it's called) I am to:

1) Stretch it with pulleys
3) Stretch it with towels
4) Stretch it with broomsticks
5) Attach electrodes to it and zap it until it jumps like a lab frog
6) Stretch it with my other arm
7) Allegedly have an ultrasound waves shot at it. That was right before the ECT therapy so I don't quite remember it.

Thank GOD no one tried to electrically stimulate my frozen Kegel muscles.

 

So now we're playing the political MS card?

I just saw this tweet:

I did love Michelle Obama's speech tonight, but I blinked a few times at the reminder that her father had MS and never complained. Was it an obvious comparison to Anne Romney, who has MS and was devastated and had to buy a dancing horse to cheer herself up?

It seemed very pointed to me.

Actually, the first place I turned after the FLOTUS speech was FOX News, because I wanted to see how they'd react (tears?). I heard "So, this was a speech about the economy," and then I changed the channel. I mean, that was a stretch.

But is it a stretch to think she brought up the MS to remind us that Ann Romney is more of a whiner than FLOTUS-pere, or to remind us that she has strong arms and is the fitness FLOTUS and the other girl is sickly?

Here it is in context:

My father was a pump operator at the city water plant, and he was  diagnosed with multiple sclerosis and my brother and I were young. And even  as a kid, I knew there were plenty of days when he was in pain.  And I  knew there were plenty of morning when it was a struggle for him to simply  get out of bed.

But every morning I watched my father wake up with a smile, grab his walker, prop himself against the sink and slowly shave and button his uniform. And when he returned home after a long day's  work, my brother and I would  stand at the top of the stairs of our apartment, patiently waiting to greet him, watching as he reached down to  lift one leg and then the other to slowly climb his way into our arms.

But despite these challenges, my dad hardly ever missed a day of work. He and my mom were determined to give me and my brother the kind of  education they could only dream of.

I don't know. If I were cynical I'd think that was to make us picture Ann Romney in a walker. (Shaving.)

Medicine Withdrawal

1) One Pervy Dream.

2) One Sleepless Night.

3) Many On-Line Purchases.

That's an old photo. Since this morning I've also bought another sweater and a jacket. Foot cream is scratched off because it has arrived. And after I typed that sentence I resisted the urge to order an emery board on-line.

The flour, incidentally, is fancy expensive pasta-specific flour. I'll be adding it to the $40 tin of saffron I bought last week and making the most expensive home-made pasta in the world. The batteries? Worth the three dollar shipping.

I still am holding out against the temptation to buy these:

... because I can only find them in that color and my size for $330.00. I will never have enough money to spend that much on shoes that weren't custom-built for my feet.

I'd much rather have this for my medicine withdrawal than that feeling of abandonment and hopelessness that I had last time.

Mrs. Science Reports: A New Trend in Prescription Dosage

When I went to the neurologist back in January, he mentioned there might be a new clinical trial to assess efficacy of a 50% dose of my current medication. I asked, "Will it cost $2,000 instead of $4,000?" and the answer was no.

(I wondered why they would like to cut the dose in half, and I thought it was because the FDA is concerned about side effects and my health. It occurs to me just now that the makers might want to double the profit margin.)

So, not only might I be taking less MS medication, the psychiatrist thinks I might be able to get off my Celexa entirely. No brain drugs at all? I reminded him what I was like four years ago when I forgot my pills for two weeks. He thinks that might have been a reaction to dropping off the drugs too fast.

Then we had a very frank conversation about how no one knows how any of these SSRIs work. All the seratonin knowledge I swallowed whole has no real basis in fact. They say seratonin's the explanation, but tests don't back them up.

We already took me from 40 to 20 last year, so now I'm going to 10, then 5, then (CRAZY LAUGH HAHAHAHAHA) nothing. When I cut down on my meds last year Gary said he could see the change immediately. I had him promise to let me know if I seem to be sliding in to something worse.

I really don't know if this is going to work. Still, it seems to be all the rage to have doctors take you off drugs.