Here it is December – and I am coming out as The Grinch

Anger topped my charts yesterday.

When was it I was so upbeat and stated that I had been approved for everything – the works, including the Gamunex-C, etc?

October? Late September?

Well, guess what. They STILL have not ordered the medication. I am out here hanging, living on borrowed time and hopes I will not contract something else, while my rheu/imm doc’s office implodes on itself. So, I spent yesterday (Friday – I realize that by the time I post this it may not be even Saturday HERE anymore, either!) calling other practices in town to find SOMEBODY – ANYBODY – to take on my case. I have some good leads, but given that I was calling on Friday, well… most had already taken off for the weekend.

This is unconscionable.

Yet another kidney infection since I last wrote. Yet another chest infection. Yet another sinus infection. And then, with all the antibiotics, a huge, multi-organ yeast infection. I am so angry I could scream! What does it take to get anything done around this medical community!? My death?

I don’t often allow myself to think of the mortality rate of pneumonia patients with CVID. I’ve had pneumonia three times this year, though, and am not only run-down, but at an astronomically higher risk for a fourth bout than virtually anyone in the “average” population. The sinus infection will not abate, and I am back to horrendous diarrhea. My usual food intake each day consists of part of a potato, and a small bowl of frosted mini-wheats with a banana on top. And I work all day to drink, drink, drink a mixture of Sprite and Ensure Clear (The peach Ensure is nauseatingly sweet, but the blueberry pomegranate more than makes up for it!). And that is IT. I haven’t been able to manage much of anything else for how long? It’s hard to remember what it feels like to actually sink my teeth into something really and truly solid and tasty. I try very hard to not grind my teeth in frustration – any of the frustration – or the emptiness.

I’ve lost so much weight that when I reached into the closet last week for dress-up clothes I found that none of my nice blazers fit – including a gorgeous filigreed velvet one I have dearly loved. I pulled on a pair of jeans yesterday and found that they have gone from tight last year to nearly falling off this year.

Here I am yesterday just as I came home from an appointment – dissertation-related. While I am not skinny, I most certainly do not weigh the 287 to which I had once ballooned. 122 pounds down so far… and no stop to the slide yet… I would show you my face – but right now I am fairly jealously guarding who I am.

So now I will morph away from my anger and see where I end up by the time I decide to stop this for tonight.

I purchased the coat, above, at a thrift store, along with several other items; just cannot afford to replace my wardrobe in its entirety every couple months or less, so I concentrate on purchasing nice items – more on the dressy end – at local thrift stores. Everything else is… baggy or incomprehensibly large. I have $400… $500… $600… $700 suits (no, I *never* paid that!) in the front of the house, awaiting resale, not to mention the few remaining designer clothes I had modeled (they had been carefully fitted to me when I was doing private/boutique modeling at one of the big Chicago merchandisers – and since my body shape has changed dramatically, I don’t think they will ever fit properly again) that are still in the attic. In my closet I have a few items; in the large drawer in which I keep my knit and other “fold-able” clothing only a few things actually fit; and, on the shelves in the closet… well almost nothing. I have to be quite creative to be comfortable. Most everything I feel truly comfortable wearing is lined up on the shower curtain rod in the bathroom so it is easy to quickly mix and match when I get up late because I am too damn tired to move.

Working on the dissertation is difficult, but it *is* progressing. I just wish I could plan each day’s schedule in advance. I have purchased some software recently to assist getting things done – terrible pain in my joints and muscles of late – and especially helpful right now is Dragon software from nuance.com; I am speaking portions and pieces and parts of my work – as well as things like this. It was easy to pick up, and I am grateful for the ease of at least that.

You know what? Talking my dissertation almost feels like teaching.

And that, my friends, feels good. I am glad for the little things.

Love,

One of the 200 Among the 54,000 Among the 72,000,000

Resource Information

As I receive healthcare benefits through CIGNA, their website is a go-to for me for policy statements and other data I need to fight through their red tape. Fortunately, they have been very helpful in the some half-decade during which they have covered us. May I direct you to two items?

One is this site http://www.cigna.com/individualandfamilies/health-and-well-being/hw/medical-topics/common-variable-immune-deficiency-nord807.html

The other is this .pdf file. I have highlighted the information relevant to my situation – you may find there is other information on there that could help you in your specific situation.

CIGNA_coveragepositioncriteria_Immune_Globulin_Subcutane

Note this language:

Although the exact prevalence of PID is unknown, an estimated 25,000 to 50,000 people in the US have the disease. Approximately 400 children are born with serious PID in the US each year. Although PID can act on any part of the immune system, approximately 50% of cases involve antibody deficiency.

So, according to my understanding, all PID is not equal. If 50% of PID cases involve antibody deficiency (basically the definition of CVID), then we are looking at a US population of between 12,500-25,000 total with the disease (see caveat below). This also means, if the logic follows, that, of the 400 children born with PID, roughly 50% of the cases, or roughly 200 births, involve antibody deficiency.

Caveat: Since CVID is only one of several types of PID fitting the 50% criteria, the actual number of individuals with CVID is a subset of the 50%… perhaps as few as 25% of that subset – or more. The prevalence is not well know.

SO, while we are fairly certain that half of the PID population has antibody deficiency, the amount of that deficiency class is yet smaller. The most accurate statement about it I can make is that we are of 200 births per year – and likely between 25-75% of that…

Makes us rare gems, doesn’t it?

Love,

One of less than 200 yearly births – or part of a population of 12,500 to 25,000 in the US today (might as well dispense with the One-in-54,000 stuff….)

This One’s a Doozie

Whoo-boy…

I don’t know when this particular rocky road became so boulder-filled, but I swear I hit a cliff face without a helmet going 100 late September / early October.

You see, I don’t even remember most of the last week in September.

The last time I really wrote anything (back in August) I was feeling pretty rough, and either that day or the next landed in the hospital for several days. Bowel issues and endless nausea – it’s not good when all your body wants to do is expel, expel, expel – and yet not. But things seemed reasonably ok when I was dismissed just as September came around, and I returned home to rest, then started to add to my schedule, little by little.

Managed to do some research for my dissertation on-site in a couple archives and was really optimistic things were going better and – WHAM – I started back in with the severe nausea and vomiting (I had been nauseous and occasionally vomiting the whole month – that hasn’t substantively changed in more than 11 months). This time had a different feel to it. I wasn’t starting from a good place – I was still tired from the August / September hospitalization, and I had not been able to build any reserves. Especially concerning, I was unable to consume even the regular chocolate Boost that had been sustaining me since last December (December 2011). Not to be nasty, but it was as though I had lost the ability to break down any of the contents of the Boost and was “returning” the “meal” entirely encapsulated in this vile, nasty yellow vomit. And vomit and vomit. More than a gallon a day. I stopped processing any and all oral medications; they came back as encapsulated foam and bits of pills. Even water seemed impossible.

By Sunday, September 23, I was struggling in many ways as I never had before. Then utter weakness set in and I sometimes didn’t make it to the bathroom – just mere steps away. I wanted to cry but was too dehydrated to make tears. Very frustrating feeling, actually. Very.

Managed to make it to my general practitioner’s for a shot of Phenergan in my butt Monday early morning (no, I did not drive), but never stopped vomiting – the meds didn’t even slow it down. We tried Phenergan Gel, dissolvable Zofran… lots of things… to no avail. BTW Zofran has NO effectiveness with me at all. And that is something I cannot seem to get through the thick skulls of ER docs and nurses. I would rather have a big, painful shot of phenergan in my butt than spend the time and money waiting for Zofran to “work”.

Either Monday or Tuesday (Monday, I think), I was vomiting in the toilet and absolutely could not draw a breath. I don’t actually remember passing out, but I do remember hitting my head on the outside of the pedestal sink, then waking up sometime later, again vomiting, this time at the base of the pedestal. No idea how long I was out. When Love came home I didn’t remember to tell him; he would probably have rushed me to the hospital at that point, but I was getting more and more confused and dehydrated. Terrible.

Somehow Tuesday came around, and I must admit I am terribly unclear what happened next. I’ve been sitting here talking with my husband with a notepad in hand, and this is the best sketch I can make; almost all of this is from his memory:

Evidently, the primal part of my brain realized I was in trouble because when he came home from work I was on the phone calling doctors for advice and guidance. I called our GP and the response was Go. Go NOW. You CANNOT afford to wait one more minute.

I checked the ER Wait Time (6 minutes rolling average at the time!) and scheduled the ER appointment (yes! You can do that here!). Love said that I scheduled the ER time two hours ahead so there would be an opportunity for him to eat dinner (how funny! And how sweet, I think, somehow; I was – and am – more concerned for his welfare than mine) but he really pushed me out the door – I crashed and crashed and crashed. He managed to wheel me into the ER (how did he get me out of the car?), sign me in, and go park the car, but at some point just after he returned to the ER waiting area I tried to get up and lie down full-length on the floor. He diverted me, and I ended up on a bench (?), vomiting. (I think it may have been two of those ER bolted-together seats – I don’t know). He says they triaged pretty quickly, and dumped me into a room quite quickly after *that*; evidently I was passing out as I sat in triage. I remember being terribly, terribly cold – and that I was so dry and weak that I couldn’t vomit anymore – the vomit was like a white, sticky web and just dribbled out my mouth, making me choke and panic. I remember him saying “Calm down. Breathe in through your nose. Stop fighting the vomit. Let it come. Let it come. Calm down. Breathe in through your nose.” Over and over again. I think he was scared silly, frankly.

Fortunately – how did THIS happen two ER visits in a row? – they managed a peripheral line on the first try. Love said it was pretty amazing – I vaguely remember his “WOW!” And then meds. I have no idea what they gave me, but it seemed to help ease pain and nausea. Quick admit, though – I was in a room within three hours. Clearly critically ill.

Love says the ER doc was concerned about the accumulated radiation of the past several years. Random thing. And yes, there is room for concern. Just an odd time and thing to say in the midst of a crisis.

In room and intense nursing care. I do know they called the crisis team several times while I was there, but I couldn’t tell you when during the week. But, frankly, I was ready. If I went, I went. The only thing I worried about was that Love would be alone and I feared for him. So terrible.

Well, Sunday evening one of the nurses came in with a floor-nurse phone and handed it to me; the doctor was on it and wanted to know if I wanted to come home. I said something along the lines that I would like to but didn’t know if had the energy to do so. Next thing I knew, I was being dismissed. Stunned doesn’t cover it – I still couldn’t keep down solids or liquids!!!

Spent the rest of the week vomiting violently, and Saturday we went to one of the minor med locations in two. I was so dehydrated that my bp was 73 / 39. Once again rushed to the ER.

Terrible, horrible, miserable time starting an IV (8 big, bruised attempts)… and things just deteriorated from there in my nursing and general medical care. Didn’t matter I hadn’t eaten or kept down anything since the middle of September – they made their own assumptions, and my care suffered. And example? I started complaining of serious pain at the IV site – but it wasn’t until I was dismissed 37 hours later that they removed the offending issue – and by the next afternoon I had developed a bad site infection. Anyway, one thing led to another – and how – and I ended up being booted out of the hospital – still unable to eat or drink. (At that point they had also convinced themselves I was forcing myself to vomit! I am sorry, but when you gag and dry heave for HOURS on end, and then, when the puke comes, you vomit incessantly for hours, that is not a joy ride… pardon me, but they are asses – and I feel fortunate that I have the ability to choose a different hospital provider within my city).

I have been home since then, except for the endless rounds of doc appointments. At one point I lost 20 pounds in 45 days – and had been trying desperately the whole time to at least hold steady (I’ve lost something like 53 pounds since this time last year. Hah. Holding steady on WHAT planet?). No, I am not emaciated – and that damned “you look pretty good, so I don’t think we need to concern ourselves with IV nutrition or anything like that yet” crap is just getting to me, getting to me, getting to me. Have been able to get down a little more than “usual” this week – but everything is punctuated by nausea – and some vomiting. I worry that I am developing some sort of illness-related anorexia: I am so completely and utterly frightened and scared of the idea of vomiting even One More Time that I would rather not eat than risk doing that. There have been days when a glass or two of juice / tea have been all I can get down – and go through days and days on end of being unable to eat. Better luck the past week, and there have been three days when I have been able to get down “breakfast, lunch and dinner” if only in the most rudimentary fashion (several bites here, there, and another). It’s a rare thing to actually be hungry – but that’s the worst. I cannot manage my meds – and certainly  not in the proper dosages. I swallow what I can of he enteric-coated ones – and everything else is crushed.

Been calling the immunologist’s office for weeks trying to figure out where we are on actually GETTING STARTED on the IVIg – and can’t get the person in charge of my case to even call me back. I have another kidney infection, have had another bout of pneumonia AND I feel lousy today. Frankly, they are going to regret not calling me back, because I am going to devote tomorrow to getting answers and being the boil on the butt of a cavalry officer. I have been approved for the IVIg. I have been approved for Gamunex. At this point the hitch is, evidently, that the person in charge of all the approvals and ordering, etc., has been looking for the “most cost-effective way of doing this.” As I told the office today, I couldn’t care less about cost-effectiveness at the moment; I need help – and NOW. I just cannot afford another major infection. With a third bout of pneumonia under my belt and the 11^th kidney infection of the year? No. Stop futzing around and work for cost-effectiveness next round. We have other priorities right now.

The dissertation is coming along, though, and I should finish my solid rough draft mid-month next month.

At least something is coming along.

A more cheerful post coming in a few… but I had to get this out. I am sure I am not alone in this treatment or these attitudes. Why does most of the medical community think they can romp all over us, assume we are mentally defective drama queens who have some level of Munchhausen syndrome (and act callously accordingly), give an inappropriately-low level of treatment because we “look just fine” (trust me – when I look like crap, I will, quite literally, be on death’s door…), and get so annoyed with us that they FIRE us from their practices? This should never be acceptable – and especially so with people with a clearly-documented illness – set of illnesses. The “medical records” rolling bag I schlep to each and every appointment is full to overflowing – and I am currently working (in between dissertation work) to scan every single document onto my hard drive – and onto a 16G flash drive. The time is not far away that I will need a flash drive double that size. But for now? Well, we do what needs doing.

Thank you for your support – and for your selflessness in sharing your own stories. I really don’t know what I would do without knowing you are there.

By the way. I was reading CIGNA’s white paper on CVID and found that the type of CVID I have is found in only roughly 200 live births each year. Will need to find that paper and repost here. Astonishing, that.

Much love,

One of the yearly 200 of the 54,000. I’m a rare gem. 😉

Why…?

Why does it all feel so calm now?

I was formally diagnosed Thursday with CVID – a very serious genetic immune disease that, while not curable at this time, does have clinical options to improve my quality of my life. I’ve – as I am certain all who have received this dx also have done – been reading voluminously about it. It seems so strange, though: now that I know what it is, I feel oddly peaceful and, well, *relieved*, punctuated by sudden, short bouts of great anger. It’s not about who or what I could have been before now (I am in my 40s and completing my PhD, already fairly well-known in my field).  But, had to resign from an adjunct position at a University and another accredited online degree program mid-semester this last Spring because I was just *that* ill. Yet, of course, it was all in my head. Or so they said.

I have been to doctors in other states (having, quite possibly pissed off the entire specialist community in my own region with my dogged persistence and refusal to accept either “I don’t know” or “It’s in your head”; if I *ever* hear the term “somatoform” – E-V-E-R – again, it will be too soon and will likely met with a violent reaction.). Somehow, while exploring others’ blogs since then with that nasty four-letter acronym search term, CVID, I get the impression mine is a common experience on the road to diagnosis. It’s also no wonder, therefore, that we tend to deal with depression, and  have difficulty standing steady on all things relationship (Thank goodness for my husband and our 20+ years of marriage, though! He’s a saint!)

The relief I feel right now is not “just” a diagnosis; honestly, I fear the future as much as I finally look forward to it. This time last week I was really and truly ready to drive as far as I could on my tank of gas, then walk my way along a riverbank until I could walk no more – and spend life watching the ripple of the water, the fish, the frogs, the birds, the stones themselves… and just drift off without a care left in the world. Not a suicidal ideation, actually – not in any way – but rather the desire to have a choice – one, single choice – in how I wanted to enjoy myself for as long as I could breathe. I cannot explain it better than that. Peace has been hard to come by.

However, I had a follow-up appointment last week with an allergist / immunologist who, on a hunch, had rechecked basic IgG, IgA and IgM levels. Now, I had a huge number of tests run at a ding-dong hematologist’s office at the end of December. Had I been with someone who was on the ball about things like this, it would have been a pretty instant diagnosis, then more tests to determine severity and course-of-action. Obviously, that did not happen – even though when I went to the January appointment I had a huge barrage of illnesses:

• Severe pneumonia
• The pressure from the fluid in the bottom of my left lung actually had enlarged and elongated that lung – it was bilateral, but this was the left side – to such an extent that it pressed from the inside on my pancreas and left kidney. I’m still fighting the kidney infection.
• Nasal swab-confirmed influenza
• A serious bilaterally-diffuse mycoplasma infection.

The ding-dong hematologist was HIGHLY dismissive – even with all the hospital results – AND the results of the blood tests he had had run *right in front of him!* ALL he said was that I needed an iron infusion for “some anemia.” Pffft. Eventually, by the last time I saw him, he had decided my problems were somatoform; somehow, according to him, because I was raped when I was 10 I just “don’t cope” and “stress my immune system with unresolved floating angst.” Wow. @@ Hell of a thing to say! Talk about unfounded pop psych!

Was rushed to Cleveland Clinic the next month; it was clear that things were declining steeply and we decided to go sooner rather than a later that might not ever come. Came away from there with a diagnosis of dysphasia (“nutcracker esophagus” with the addition of malfunctioning upper and lower esophageal sphincters) with which I do agree; I have had digestive issues for years and years and years, and had been vomiting 10-15 times a day since the beginning of December. Still do have GI issues to beat the band (I’m seeing a lower GI specialist next week) and the only thing – and still almost exclusively the only thing – I have able to tolerate is chocolate Boost. Yes. I have been on Boost since December, which we now get as Target brand with the addition of plenty of scoops of chocolate Quik; there’s only so much of that stuff you can consume without going utterly batty. I used to love chocolate, actually…

Returned home (a long drive and two flights later) utterly, totally exhausted. I just… collapsed. At that point I realized someone else had to teach these students what I, obviously, could not due to my illnesses, and resigned. That really was one of the hardest things I have ever done. I absolutely love teaching, and cannot imagine myself doing anything but research in my PhD area —– and teaching. If I never do anything else, I will look upon educating hundreds and hundreds of students as the most important thing I have ever done professionally. It has been a distinct honor to do so, and all I can think of is finishing the dissertation (nearly there, actually) and going back into the classroom. We will see what we will see.

The utter agony of even rolling over in bed led to stiffness and migraines – but getting up was often far worse. Pain gathering my body to sit. Pain standing. Pain walking. Pain and exhaustion, pain and exhaustion.

And infection after infection.

Many infections later, I ended up, yet again, in the ER for a critically bad bowel impaction (from the base of the large intestine almost to the top of my small). When I was released from the hospital, I went in and saw my GP. This GP was “new” to me – I had been with another (and frankly, better) GP for some 17 years, and I made a conscious choice to step away there for a year or two and then come back together so we could evaluate the body as an entire, connected organism, with a better focus and new ideas. Well, I hadn’t quite anticipated doing it that week – but the “new” GP sent a certified letter immediately after I saw her stating (and I am paraphrasing) that I was “too complicated” for their practice and that it was “in my best interests” to leave their practice, that she would only be available for emergencies until the end of the month, and after that, she wanted no contact with me beyond notification of where to send the files.

:::stunned::: Yes. I was fired from my doctor for crime of being sick.

So I quickly made arrangements to go back to my original GP, who is one of the best, most pragmatic clinicians I have ever had the pleasure of knowing. A pure joy.

Next thing I knew I had developed my fourth bout of shingles – second one on the year, and a different place. Then, I tripped in the dark in the den and landed squarely on my knee – which, of course, became infected inside and out.

And two weeks later? Another round of pneumonia.

My GP sat me down at that follow-up visit and said, “I have known you so long, and I am so sorry I need to have this conversation with you, but I think we need to think about some things.” She proceeded to acknowledge that I have a sensible and clear living will and medical power of attorney – but (quite gently) asked whether our Will is in order. I didn’t get angry, I wasn’t really shocked. I knew I was dreadfully ill. I asked her why, though. I mean, I knew – but I needed to hear it. She told me that I was so very ill at that point that, were I to contract one more serious illness on top of the pneumonia I was attempting, struggling, fighting to conquer, I could and likely would die within days.

It never really seemed as though that was at all unreasonable or shocking. I have been sick all my life, and I know I do look at bit like death warmed over right now. I used to be a model and it has been a rare day to go out without makeup since I was in college (undergrad) – but I haven’t worn makeup except on two occasions in the past month. I just feel that utterly awful.

 

At least I brush my teeth. :::chuckle:::

 

My dear doc (We’ll call her Dr. “W” for being Doctor Wonderful) did ask me to return to the allergist / immunologist, though, just to see if he might be able to pull something out of his 40+ years of practice that might even be comforting – we were beginning to think that things really were getting down to comfort measures, and I secretly wondered at what point she was going to call hospice. Well, that’s when the allergist / immunologist reran the Ig series. He called me the moment he received results and said he needed to see me – immediately. I saw him last Wednesday, and we initiated an antibody challenge series (damn insurance companies…).

 

I really didn’t feel as though I should go anywhere Thursday – I was worn out – but had two appointments and really didn’t want to cancel, both out of respect for those two clinicians and because I really don’t want to rack up more co-pays without at least going in and touching base – especially if this were to be a terminal situation. Being sick – and especially this sick for this long – is a horrible drain on family finances and impossible to budget for. I mean – how do you save on a hospital visit that saves your life? You don’t.

So, Thursday I went to the docs. The first one I saw was very, very concerned not by my demeanor. On one hand, I was pragmatic, and determined to finish up the things I needed to do to return a full draft of my dissertation to my committee so I could at least get through the oral defense as quickly as possible and perhaps (and yes, this is what I was thinking) be awarded my degree posthumously. Her worries were, though, based in the radical physical changes she saw that had occurred over the month since I had last seen her. When I saw her partner, who practices in a related field, she took a look at me, refilled what scrips I needed, and then – to me she somehow just looked very angry – ordered me to go sit in the waiting room. All I could think was that – well, all I could foresee – was being fired from yet another practice. But I was just so far past caring that I just sat there.

She came out about ten minutes later and said, “You need to be at this doctor’s office ::pointing to her card, on which she had written down a doctor’s name, address and phone:: within the hour. He is expecting you. Now. Go. Call me after you are seen and we will make a return appointment.”

I thought, “Dangit! (not the actual word!) I am far too tired to do this.”

But, he was a rheumatologist / immunlogist – all wrapped into one. Maybe he might have an idea – and again I was thinking palliative care. For the sake of at least final clarity, I went.

Now, as with so many who deal with this THING that never seems to be acknowledged, never differentiated, never diagnosed, I carry medical records with me when I am going to go on an appointment – whether it is with an individual physician or the ER. I should say MEDICAL RECORDS. A lot of them. Files. A lot of them. I gave Dr. “X” (for X marks the spot!) everything he asked for, and he sat down with me, went through every single blood test result from the past year; discussed my medications, diagnoses, symptoms, etc.; went through the list of every single surgery I have ever undergone; asked questions about childhood illnesses; performed a brief, but very focused, physical exam. Everything he needed to evaluate it.

He was most interested in all the immunology workups I had with me – especially those from the ding-dong hematologist. Thank goodness I held onto the test results with an iron fist. Being a pack rat, in this instance, paid off.

And he had an answer. For the first time in my life, there was a definitive answer.

I have CVID.

Dr. X told me the basic information, what I needed to know to get us moving, what additional tests he was ordering, what I needed to know to learn more (on the Internet, natch’), and what he proposed for treatment.

Now, I have to level with you. I had suggested CVID to the ding-dong hematologist – and it was dismissed out of hand. Somatoform was easier, I guess. So I had put it aside even though it felt right. I didn’t pursue it further. It just no longer seemed worth the time, effort, energy or care.

Well, now that I know what it is I feel more peaceful and certainly more purposeful.  I have bursts of astonishing anger sometimes, but I feel otherwise somehow at ease in my skin in a way I never have been ever before in my life.

The anger is somehow not so much about the fact that it took so long to be diagnosed per se, but rather that it has taken this long to prove that I don’t lie, that I am not a shirker, that I am not a dawdler… I AM NOT A HYPOCHONDRIAC. THIS IS NOT IN MY HEAD. THIS IS NOT FAKING OR IDIOCY FOR ATTENTION… THIS IS REAL. This health doomsday course I have been on has been quite serious – and now that I know, it has been far more serious than I had imagined. (I’ll talk more about my relevant health background at another time – saying these things, here, is far more important at the moment.)

Oddly enough, my greatest relief right now is not so much in the hope I have for a better life with treatment, but rather that I can look every single person who has ever doubted me, who has ever thought any of those things about me – employers, academics, friends, family – in they eyes and state clearly and for the record that I do, indeed have an illness, and I am not the assumption you have made about me. I no longer feel as though my ethical framework – or my honesty – is in question. Because, for me, nothing more matters than the ethical life lived.

And nobody can ever question that part of my being. Ever. Again.

That is it in a nutshell for now. I’ll catch up with you soon.

Sincerely,

One in Fifty-Four Thousand < — the ratio of cases of CVID in the general population today. I read earlier today – but haven’t had an opportunity to confirm the numbers against the current population of the US – that only roughly 6,300 people in the United States are fighting this disease – and just 140,000 worldwide. There may be many, many more, but very few know how to diagnose, much less treat, this condition. Education is the key to solution.