I guess the thing I’ve accepted these days is that I am probably a lot closer to the end than some extended fantasy timeline where I get a house or some Italian villa before Italy gets creamed by a volcano or my latest dissection pops.

I have been in so so much pain. The kind of pain you really should go to the hospital to rule out the worst of, but I have had time trying to tone bell the shit out of my dna or temperament. Or mood. Whatever it is, the healing tones shit is the shit. I don’t care if it was the placebo effect, my pain was yelling level.

Why didn’t I want to go to the ER? How about I can’t get COVID. Having a connective tissue disorder like ACTA2 would be asking for the worst to get something as easy to avoid as COVID. It’s certainly generally easier to avoid that than the stress a normal life woluld impart on me, so I will avoid the stress of worrying about it, and the expectation that bad things will happen if I don’t go. So I have been in here when I maybe should have gone earlier in the week. I figured a few free days from drama would be better than getting stuck in the hospital, unable to help myself. If I die in a few days. I had a few days free.

So I want to start writing out some rules for living. I think they would be considered prescient advice knowing what I do about being sick, but take whatever makes you feel better. I suppose. I will be adding to this hopefully daily, and expand on it all later, if I am afforded another chance. So, here are the first few….

#1 When you have a rare illness only hospitals with medical schools/universities attached. Worse outcomes come from most private hospitals, the stranger your condition.

#2 Strive to try & be someone who adds to someone’s existence. Detractors are the worst. I try not to be mean, I try to spend my time educating people on other perspectives over outright wishing any mean things on anyone. Try & be positive & spend your time hearting the stuff that makes you feel good or educated, but for people who need acknowledgement, recognize that. You get what you give & you aren’t even guaranteed that, Don’t forget it.

#3 Ask for help when you need it, but understand sick people drain everyone around them. It isn’t your fault. clearly none of us asked for this. But remember that the pool of empathy always has a bottom for everyone you know just about. Some people are learning it is not even an inch deep, it seems, as their families abandon them seemingly immediately, unaware or maybe just not wanting to pay attention to the sickness of those around them. I have gone through different groups of support through every illness, though I have lived in multiple cities over time as well.

Sickness hurts, it is draining. It drains you, & it drains the people around you. Nobody likes to see someone close to them suffer. And when you are suffering, generally speaking, nobody can help alleviate that for you. You end up like I do, forever self-experimenting for relief, spending every dollar you have trying to find a little extra life, a little reason, a little season to it all.

#4 Linked to #3 is the idea that nobody likes to think about their own mortality, let alone someone’s they care about. Keep in mind dying is not something any of us are really prepared to do as we try to survive tbhis life, seeming now intent on killing us in multitudes of ways these days.

#5 Make sure you understand your fuel is everything. Eat garbage, feel like garbage. Even w/my genetic defect ,the food I eat is almost everything in terms of how I am able to feel most days. I have a bag of almonds in the nightstand next to me, a keto snack, some cashews. I try to not drink a lot of soda. I quit drinking a while ago largely and can count on one hand the amount of times now in the past year.

People say supplements don’t work but if you are missing key vitamins, you will feel it. I take a hair supplement, endothelial repair and magnesium every day, I’ve dosed up on zinc, some others, D3 etc. I take a tsp of MSM powder, that is supposed to help things every day in that smoothie I have now-Lyfe Fuel I believe? Frozen blueberries, strawberries, walnuts banana, pomm juice. Best ever.

#6 Travel, Pandemic notwithstanding, the more you get to experiece the POV of others, the more wholesome & comprenhensive your human experience is. You can get that via reading in some ways, & I expect some true VR experiences one of these days, But go to the places if you have the opportunity and want to. This will probably be easier in a few years, hopefully mid to late 2020’s, but definitely character-building experiences.

The next section will be tomorrow….