On Being Chronically Ill During a Pandemic

Ooohh you SCARED? Of a little virus that can't even SEE?
Well then, YOU should stay home and let the rest of us normal people live our lives

Ok for how long

For as long as it takes

This is a hard thing you are asking - can you please stay home too. Ending this pandemic is in everybody's best interests

No I am normal and staying home is WAY too hard for me. Mental health is a thing.

So you want increased access to mental health care? 

No. I want to go back to what I like and pretend that fixes mental health in this country

Are you willing to do anything

No. As I said, I am normal. You are not. You have to make sacrifices. I do not. HOW ARE YOU NOT USED TO THAT YET?

Will you wear a mask

That is going too far. Once you give the government the power to tell you to wear a mask you basically live under communism. I am pro freedom. 

Will you stop gathering

No. Did you forget I was pro freedom. And it is not my fault I love my family more than you love yours

My "freedom" ends if I die as a result of your actions

Your life is your problem and not my responsibility. Take some responsibility. Your life is in your hands not mine. Have you heard of hydroxycholoroquine

Young healthy people are dying too

No they aren't. They probably had something wrong with them but didn't know it

So do you have something wrong but don't know it

No. I would know. 

Ok but - hospitals are full. Chronically ill people rely on having working hospitals  - we tend to use them more often.  You can do something about that by not gathering

Hospitals are always full during flu season. This is the flu and the numbers you are seeing are lies made up to scare you. 300k people die from the flu all the time.

Pretty sure they don't

You are being lied to

So you are not willing to do anything

No I am

Really? What?

I will bring you cookies and tell you we miss you and hope that someday you can join the world again

Can they be from Trader Joe's?

Sure. Anything for you

Thanks

Things I Know

THINGS I KNOW

1. Sometimes you get sick and you don't get better.

2. People that have always gotten better after getting sick do not fully understand this.

3. We live in a world where you have to depend on other people. You have to trust that the people that make your medicine, and your supplies, can get them to you. You have to trust that people around you will help if you have an emergency. You have to trust that machine you are attached to will work. Which means, You are absolutely, 100 percent incapable of "standing on your own 2 feet" all the time. This....sucks.

And it means....

This is crap. Ignore it.

If you’re reading this, you’re wasting your Tim

4. Your choices aren't everything. This is hard to accept. Your choices are important as hell. They are. Make them carefully and use them wisely. But sometimes other people's choices are important too and they affect your life greatly. Sometimes life just happens. Take responsibility, yes, but learn to accept what you can and cannot take responsibility for.


5. In an apocalypse, I used to think I'd be OK with dying first. Turns out, not so much. I would like as many people to survive as possible.

Hopefully not yet

6. You are not invincible. It will bother you when people act like they are invincible. You want them to lose their sense of invincibility, and yet you don't, because wouldn't it be nice to feel that?

7. Sickness doesn't care who you are. It is not vindictive, nor can it be coaxed into being forgiving. It just....IS. And it doesn't care if you're broke, if you're wealthy,  if you have to be somewhere, or if you are tired of dealing with it. Because it's not your pet. It's disease.


There are many many things I do not know. There are many many things I thought I knew that I no longer believe. It's part of being human. I will learn things, I will forget things, I will change my mind about things. We all will. But I will fight against some things. I will stand up when I have to.

Because there are some things that just always will be true, no matter what other people say or do. There are some things you cannot set aside with "agree to disagree".

 Spin some things however you want, but at the end of the day, it means "Saint Diego"

https://www.youtube.com/watch?v=8AIwaSD9Sco

(Bill Gates isn't trying to poison you and essential oils don't cure diabetes)

Ramblings

When I was 30, I had 3 medical things happen all at once:

I had minor surgery on my thyroid to remove a cyst. I had Lasik surgery on my eyes, and I broke my right wrist.

(In fact, I often wonder if those 3 events all in the span of a few months is what triggered the beginning of the autoimmune attack - I was diagnosed 3 years later. But I will never know for sure.)

Of those 3 things, the breaking of the wrist was, BY FAR, the worst. It was incredibly painful for weeks, and I had a cast on my dominant arm. I had a 2-year-old at the time, and changing diapers was beyond me. How do you hold a squirming kid and change a poopy with one hand? I couldn't blow my hair dry. I couldn't get dressed easily. But you know what I really couldn't do?

I couldn't WASH MY HANDS.

Not being able to get my cast wet made hand washing this weird exercise in "what is the sound of one hand clapping" type nonsense. I longed for the day when I could indulge in the luxury of having 2 hands go under running warm water, the soap bubbling up nicely, the rubbing of both hands together. I would seriously fantasize about it. (but not in a gross way, come on people)

And then, of course, eventually that day came when I could wash my hands again. It was GLORIOUS.

It's been over a decade, and I still sigh with gratitude when I can put both hands underwater and really wash them both. It's still a luxury. And as you can imagine, I've been washing my hands a lot lately.

When this is over, I wonder what will be a luxury that wasn't before.

Will it always bring a spark of joy to go into a restaurant? To wait in a line and not wonder about the health of the person next to you? To watch a movie in an actual theater? Maybe every time I get my hair cut I will be astonished at the wonder of it all. Who am I kidding, I already do that. Hair people are magicians.

And the quarantine is getting to people. As expected, the backlash is beginning. "This is government overreach" "This is overhyped" "We can't believe the reports" "20k people would have died anyway" "They're lying about the numbers" "Hospitals are empty - I see the parking lots"

These are all completely normal responses to a completely abnormal situation. I just hope it doesn't lead to people breaking quarantine before they should because I don't want to read them tweeting about the death of their loved ones. Seriously my Twitter has way too many people mourning and it is HARD.

I don't really have a point here I guess.

Except that I really love washing my hands.

BCG in the Time of Covid

*Obligatory - wow I haven't posted in a while etc etc*

So as you all know, I am in the BCG Trial run by Dr. Denise Faustman to see if the vaccine can help Type 1 Diabetes. The trial is currently in Phase 2. I cannot publicly discuss my results or lack thereof, so don't ask. Thanks.

I had my first shot in March 2016.

In March 2020, I was to head back for my last shot. (I think it's my last? Hard to keep track at this point) I was supposed to have a follow up at the end of April.

But, as you ALSO all know, we're in the middle of an effing pandemic and traveling around the country right now is not advised. I am HUGE proponent of STAY HOME and I've been yelling at people to do so on a regular basis and I think I've annoyed everybody with it but that's OK. I mean, hopefully it's OK. No way to know, really.

I canceled my March visit. The lab understood. They are remaining open, as they are "essential" and told me they would change my April follow up to be a shot visit instead of just a blood draw. Seriously these people are great to work with.

I haven't canceled that yet, but it is very very likely that I will. I don't see this wrapping up in a few weeks.

The lab is willing to work with me to reschedule and I likely won't be dropped from the study, so that is all good.

The BCG vaccine is hitting the news, though, with possible evidence that it can offer some protection against the dreaded Covid-19

New York Times

Science Mag

As with most things concerning the Covid, everything is new and up in the air, but if this can help protect health care workers, and others that are high risk, and me, that would be amazing.

So I would like to get the shot, but I would also like to not travel on 2 airplanes, take public transportation, spend the night in a motel, go to the lab, and then repeat the process to get home.

I have a mask, and lots of soap, but still, I need transporter technology, even though my brother is convinced that it is murder. He feels strongly about Star Trek tech. (or he used to, he may not have opinions anymore, it's not something we discuss often)

Right now I'm leaning HEAVILY towards canceling/postponing. Like, 98 percent.

If I could get an antibody test that would show if I've had it, I would feel a lot better about traveling. I'm working on it, but those odds of that happening are low, if nothing changes. But, if nothing else, things are changing rapidly right now, so who knows.

And is it possible I've had it? It is. I coughed and coughed for 2+ weeks after getting home from Disney World, but I never really had a high fever (I got to 99) or muscle aches, or fatigue. Just a cough. I mean, the cough sucked, it was gnarly, but I have a pulse ox, I was never in danger, and honestly I consulted nobody about it because I would be told to just isolate at home and come in if it got worse, which I was already doing. And tests are few and far between.

Anyway, that's all. If BCG could protect against Covid-19, that would be amazing. Then you could all get shots with me, and we could compare arms. Wouldn't that be fun?