Me practicing getting suited up to go to the lab this week…

That’s the one thing about those of us with chronic health problems, there’s only so long we can go before we have to step back into a health care facility again…

I knew this day would come, so in addition to my N95 mask,

I have plastic goggles to protect my eyes (Noah told me viruses can enter the body through the eyes, so if you’re going to a high risk place it’s important to wear googles),

and then a plastic face shield…it’s not as good as a medical face shield, but I figure it’s better than nothing (?)

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Strange bruises with the severe pain in my left hand


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Available until Jun 10, 2020

Yesterday the joints in my hand were hurting really badly, but today you can actually see physical bruises where the joints hurt really bad.

My joints hurt all over my body, especially in my hands and feet. Every time I take a step it feels like I’m walking on knives. It seems to be worse in the morning when I first wake up, but it’s bad all the time.

But this pinky finger joint pain is excruciating, and now I have a bruise. It’s weird how the pain started first, then the bruise appeared.

My joint pain has been getting worse and worse over the last week or two…if I had Covid at the end of February (which I’m pretty convinced I did), could that be causing all the joint pain I’m having now?

I’ve had joint pain throughout my life, mostly my knees, but nothing like this…this pain is almost excruciating at times…

Do I need to go to the ER? I feel like something is horribly wrong…I’ve never experienced anything like this before…

***

The video from today, showing the bruise in both the main joint of the pinky to my hand, and the joint in the middle of my pinky:

Click to DownloadIMG_0451.MOV
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This is the video I sent you yesterday, when the pain was severe but I don’t think the bruise was very noticeable:

Click to DownloadVideo.mov
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Our Fast Food Culture clashing up against Patience — there is nothing we can do but wait

They can’t rush the vaccine.

I’m sure they want to, the world holds its breath eagerly for daily updates,

but as the news cycle rehashes the same information with updated numerals, the outcome is still the same:

We must wait.

Patience?

A Guns and Roses song, a proverb, a mother’s wish,

Patience is a choice, a mode of behavior, a muscle long forgotten, an under appreciated value.

And now we need it more than ever.

Please stop talking about opening the economy. Please stop talking about all of the negative impacts on business, what is the alternative? Throw thousands of people into the viral slaughter, who wants to volunteer?

Death is easy when you’re pointing the figure at a distance —

But for you, your parents? Your friends?

Okay, so shut the fuck up and sit back down and accept it—

The world needs a little patience.

Hundreds of years of evolving medical discoveries,

and the best weapon we have against an unknown pathogen is the same weapon we used in the 14th century to fight the Black Death —

Quarantine.

Watching covidiots ‘protest’ the stay at home orders is America’s eroding education system on full display for the world to see.

Covid-19 didn’t invent the Quarantine, in fact it’s been used periodically throughout history—because it’s sometimes the most powerful weapon we have,

to try

and save your life.

I can’t watch the news anymore because it’s the same information being blenderized and repackaged as daily news.

We just have to sit here and wait. If we’re lucky we’ll have a vaccine within 2 years. Or the virus will mutate into a less virulent form and start to disappear, which is what my ID doctor thinks eventually will happen. He said bat viruses don’t like to be in humans so they change quickly. Measles has been measles for a long time and it’s a very stable virus (so get your fucking vaccine),

but bat viruses don’t like to be in people so they mutate faster, and eventually mutate themselves harmless.

But that isn’t a sexy news story, and it definitely doesn’t give us a storyline to follow—‘let’s wait until the virus mutates away’,

but the truth is, the virus mutating into a more benign form,

is probably just as likely to save us, as the narrative of a vaccine racing through development, to producing enough of it, to getting everyone an actual shot, to reach herd immunity.

People have taken the vaccines we do have for granted for so long they don’t realize how truly remarkable (and how much development and work) each vaccine takes to create one of them.

Patience.

There is nothing we can do but wait.

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CDC Director Warns Americans Of Potential Second Wave Of Coronavirus This Winter

https://www.yahoo.com/huffpost/cdc-director-warns-americans-potential-second-wave-coronavirus-winter-233110839.html

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How Noah came up with the idea to do a study about the complement system and MS looking lesions —

I think I’ve mentioned this before, but it’s always **bugged** Noah tremendously when I tell people I have MS. I explained to Noah why I do it, because it simplifies that I have a very serious medical disorder, saying ‘I have MS’ usually shuts people up really quickly and ends any further discussion.

“Strange weird immune deficiency that hasn’t exactly been figured out”, people tend to read as a fancy way of saying I’m a hypochondriac.

I don’t usually talk this way to medical people of course…unless I really don’t think they’re going to be any help and I never plan to see the doctor again anyway,

but in general day to day interactions when I’m in situations where I need to ‘justify’ my medical existence,

my MS diagnosis usually does the trick.

Tonight as I was tucking Noah into bed, (after a night of the Big Short and the power of studying economics and he was an MD),

“But it bugs me because you don’t have it.”

“Well, I agree Noah, but you have to understand some very intelligent doctors — even the head of the MS clinic at Cedars — are pretty convinced that actually, indeed, I do have MS.”

Noah sat up in bed crossing his arms in mild frustration.

“Did you explain your history? Did you talk about your lack of MS symptoms, and your history of atypical immunodeficiency problems?”

“Yes Noah, I did, but she’s still pretty convinced. And a few other neurologists too. But as I’m sitting here talking with you about it and not taking any MS medications, clearly I’m pretty convinced I don’t have it either.”

Noah thinks about this for a second.

“But this is what’s important to take away from this situation Noah — this doctor at Cedars is extremely intelligent, she’s an expert in the field — so why would an extremely intelligent and expert in the field be convinced I have MS if actually I don’t have MS? Obviously the answer is something very unusual and rare is going on. Extraordinarily unusual.”

Noah chewed on this…

“Like in the fall of 2005 Noah, when I first got really sick, I didn’t have my previous medical records with me, and unlike the way I’m preparing you for life, no one prepared me and I was in total denial about myself. So here I was, deathly ill, so why were so many intelligent doctors missing it? You have to understand, most doctors want to fix you if they can — they want to give you a recipe or a recommendation or a pill to make it better — it makes their life easier too because then you’re not complaining anymore. So as much as I wanted to write off a lot of doctors as just being assholes, I knew in my heart they weren’t…so if I knew I was telling the truth, and I accepted they would give me the solution if they could, but they weren’t, then clearly the answer was something outside of the ordinary. So that led me down on the path to getting my old medical records, to track down my biological father for family medical history, etc.”

Hmmmm…

“So this neurologist is extremely intelligent?”

“Extremely.“

“And she’s absolutely convinced you have MS?”

“She’s absolutely convinced.”

“And your MRI lesions look like MS lesions?”

“I’ve never seen the MRI myself, but from what I’ve been told, yes.”

Noah’s mind starts racing…

“Then the answer is clearly in an area of the body that hasn’t been considered yet. What else could cause the myleth sheeth to behave like that when it isn’t autoimmune related. Some people are born with a lower level of sheeth then normal, some people have thinner sheeth than normal people, and literally these people think slower than a normal person.”

Then Noah started to explain to me lesions in the brain and how neurotransmissions work, some of it I already knew but some of it I didn’t.

“Do they know which part of the brain you have lesions?”

I think so? But I don’t know where they are. That frustrated Noah ‘how can you not know?’ 🤪

So after giving me an introductory lesson on brain lesions,

Noah paused for a second…

“The complement system mom. I want to study the complement system and it’s impact on brain lesions.”

Wow.

I just looked at Noah and said, I have no idea what’s already been done about that, but in 15 years I’ve had these lesions no one has ever once asked me or talked to me about a possible connection.

Dr. Schroeder once speculated I could have been born with these lesions, but other than that I’ve never heard any other explanation than MS. It’s hard to remember now, but I got my first brain MRI because I paid cash for it, not because it was clinically indicated (a point Noah found particularly interesting “did you tell the neurologist that?”).

So….

this is the story of how Noah came up with his experiment idea if he gets to go to a university that allows undergrads to do an experiment ❤️— Noah’s personal annoyance over hearing me tell people I have MS, lol

“Stop saying that to people! YOU DON’T HAVE MS MOM!”

Then what do I have, my dearest Noah?

I guess he wants to find out 😍👍 ️

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Thousands converge to protest Michigan governor’s stay-home order in ‘Operation Gridlock’

This scares me…not just because they’re putting the health of so many people at risk, but it’s blatant disregard for the people who actually know what they’re talking about — the doctors and scientists.

This is exactly why Trump might win again — there are just too many uneducated and ignorant people out there 😡. You’d think the Internet would have brought the age of education,

but people are too blinded by what they want to see…so they seek out information that confirms what they want, instead of actually seeking the truth…

https://news.yahoo.com/thousands-converge-protest-michigan-governors-191743463.html

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What’s more remarkable about the current Covid-19 pandemic is that it hasn’t happened sooner

I’ve been reading about the Black Death, thinking about other major pandemics throughout history,

and it’s really remarkable that it’s been 100 years since we had the last international pandemic.

It might actually be a record in human history, that we went a little over 100 years (since the 1918 flu virus) inbetween pandemics.

It’s a testimony to the success of modern medicine — most notably vaccines and antibiotics — that we had such an extended break in between pandemics—

What we are experiencing now isn’t new and definitely isn’t even the worst pandemic human beings have endured…just shocking perhaps because there’s no one alive who remembers the last one.

I hope once the chaos is over, that both the general public and our world leaders learn from this experience and implement better protocols in the future. I hope the general public in the United States wakes up to see why we need a national healthcare plan, this pandemic involved the government constantly needing to spend millions on equipment and resources to fight it — that’s millions of tax payer money — so when it’s really important, there is no one hospital or one company that can save the people, we need the federal government and their infrastructure to take action.

So why not just give everyone a health card since we’re all paying for it when it really matters anyway?

I also really hope I don’t hear one more god damn person slam vaccines anymore. I hope those ‘anti-vaxxers’ finally get the wake up call they are long over due. All the sane people in the world are sitting here praying they get a vaccine to market as soon as possible. Sane people understand the power of vaccines to save lives and stop (or at least slow) massive international pandemics. It’s about time ‘anti-vaxxers’ stop drinking their deluded kool-aid and join reality.

And for anyone actually reading this blog, the stock market is still going to go down. Way down. We haven’t even hit the bottom yet. I still think, no matter what happens this summer, there’s going to be another wave of the virus in the fall. I’m hoping they get a treatment figured out and/or a vaccine by the fall, but most likely it won’t be figured out until 2021.

For anyone who thinks these numbers of infections and deaths are bad,

Covid-19 is just getting started.

https://www.historyextra.com/period/medieval/black-death-plague-epidemic-facts-what-caused-rats-fleas-how-many-died/

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