And I should add, Noah and I both agreed, what makes this all the more difficult, is that Luke actually beli eves he’s doing the right thing —

Noah and I both agreed, probably why Luke isn’t backing down — inspite of all the facts being in our side — is that in his head Luke actually believes he’s doing the right thing — as twisted as all of this is, it’s coming from a place of ‘fatherly love’ —

Kind of like the Christian who does whatever they want because Jesus is on their side,

Luke is not relenting because he’s deluded himself into thinking this is what’s best for Noah —

In a twisted way, Luke means well (in his own mind), but that’s why it’s going to take a court order. Time and time again Luke continues to dismiss Noahs needs or anything in Noahs life (and even insult me — the woman whose given Noah everything, including the gift of life — either subtly or not so subtly),

and the only way it’s going to stop this kind of warped psychological abuse is with a court order.

Thankfully, Noah is a very strong willed young man, who can think for himself. It’s going to carry him far in life. Noah sees through bullshit (in anyone), and that’s going going to help him a lot through the years in front of him. ❤️

As I told Noah tonight, the end is near — I see the light at the end of the tunnel, Noah is racing towards 18 — hopefully we can create a world where he can enjoy the remainder of his childhood, but even if we can’t, not to worry, the end of this madness is in sight 🙂

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You’ve got to read this — there is more to life than we understand ❤️

Answer to Have you ever caught your child doing something that shocked you? by Terri Echols
https://www.quora.com/Have-you-ever-caught-your-child-doing-something-that-shocked-you/answer/Terri-Echols-3?ch=99&share=1f527dca&srid=amSVA

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The FDA just approved a baby-saving drug that carries an obscene $2.1 million price tag

Noah,

You should read about this new drug — somewhere in the mechanism behind how this drug delivers the correct gene is the way to cure many different genetic disorders….including our own ❤️.

I know you’re going to figure it out one day. In a lab, with your friends, maybe even a big grant behind you,

but please never give up, because one day you will figure it out 🙂

Love,
Mom

https://www.yahoo.com/news/fda-just-approved-baby-saving-150454118.html

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There are just some wounds you don’t heal from

Some say ‘Time Heals All Wounds’,

And I say,

That’s bullshit.

There are just some wounds we don’t heal from…we may learn to live with them, to function in some way, but we won’t ever fully heal.

I haven’t posted on this blog in awhile because it’s all the same shit going on in my life, the never ending cycle of IV antibiotics (for this actinomyces infection I can’t get rid of), and blood work and doctors appointments —

Whenever someone says ‘I have an immune defiency’,

what automatically follows is a never ending pile of medical shit.

And documenting it all…well, it’s pretty much impossible. No one would ever read it all. Even the Cliff Notes version of my medical care would be a few hundred pages long…

Noah is doing better. He battled this eye infection that just wouldn’t go away for a few months, multiple couple course of antibiotics and antibiotic eye drops, finally did it. (Plus a little magic 🙂👍.)

But there are just some other things, the normal human things that happen to us, that are even harder to heal from than anything the medical gods would dish out at me…

Right now my main focus is to try make sure Noah is set up and ready to be okay after I’m gone. I know his journey is going to be hard, but hopefully I’ve helped him find ways to make it a little easier than what I went through…

Noah was born with a magical weapon that I don’t have, that most people don’t have, Noah is extraordinarily brilliant, and this is not an exaggeration. I mean, mind bogglingly brilliant.

And with the right education and mentors, hopefully that brilliance will help him lead the way to the solution…

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Blue Cross called me — I’m going to tell them that antibiotics are much cheaper than expensi ve MS drugs —

Blue Cross called me, can’t imagine they genuinely care about my current state of health…

I was going to ignore it (like I do most of my voice mails 🤪👍),

but instead I’m going to call back, and act like I believe they genuinely care about my well being,

and explain very clearly to them the pain and soreness I still feel in my neck — the rawness — and every single time I try and take a break from my antibiotics (and given my lack of compliance, I’ve taken a number of breaks…), it gets worse—that’s how I know it’s still the infection.

The problem with my case is that I’m always going to look healthy — I’m never going to have an elevated wcb, I’m never going to have a fever, and I’m always going to look healthy, no matter what is happening inside my body —

Which means the only way we know if I’m healthy or not is based on how I feel. If we’re lucky we can get a culture, but we’re not always that lucky.

(Or in this case, the potential for harm in getting another culture from my neck doesn’t justify doing it, because clinically it’s been the same pattern since I was diagnosed—we know what the problem is, I’m very familiar with the symptoms and the disease pattern, a new culture isn’t going to change anything—)

If my neck disease has mutated to the point it’s now resistant to my therapy, then that would also change my clinically presentation, which hasn’t changed yet—

(Though sort of hasn’t changed…the Vanco finally got rid of my night sweats, no idea what that was about. I had convinced myself it was most likely menopause, and only half heartedly thought infection, but now that the Vanco has gotten rid of them I think maybe I did have some kind of very deep infection…sweats weren’t very long enough (2 months?), and they also got worse as time progressed, and they got so bad I finally doing the Vanco regularly cuz I was literally drenched in sweat every night, it was getting scary, and now I they’re gone — I haven’t even had a single one today —)

Anyway — it’s probably something else, and like many things on my case, it won’t have a name but medical care finally made it go away 👍.

So I’m basically going to sweet talk bargain with Blue Cross: my neurologist is very worried about me, my Ms has been getting worse the last two years, she wants me to start very expensive MS drugs,

but I’m saying no because I’m still battling this infection, which will kill me faster…

It may not work, and I may have to go back down the rabbit hole again (neck surgery, culture, etc),

but I think it will help…

It took my old insurance Blue Shield a few years to figure it out,

but one day Blue Cross will realize they’ve hit the lottery of a sick patient and it’s just going to be expensive until I go onto Medicare one day…

(This is why I was really upset for awhile when my insurance changed, especially since I wasn’t even consulted, because I knew I was going to have to go through this again, but there’s nothing I can do about that, and I’m lucky to be alive, so that’s what’s most important 🙂

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Please try IVIg to help fight your cancer ❤️

I really believe it will help you 😍.

Love,
Tara

https://www.ncbi.nlm.nih.gov/m/pubmed/16391406/

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I learned something — always call an ambulance when it’s urgent

They just can’t believe it’s that serious because I ubered here.

By the time they get to me, I’ll either know it’s not urgent (and I’m just going to have a super bad headache for a few days),

or it will be too late and I’ll be dead.

California needs to create 24 hour medical care that’s free for people who aren’t insured, because the ER is clogged with people who don’t belong here but they’re coming for the free care of the free sandwich.

It’s a better use of state resources, to fund 24 hour free clinics. If the doctor determines its more serious, they can be sent here, but most people know they don’t belong here, they just want pain meds or a strep test or some bloodwork or whatever.

This pain is so excruciating, if I hadn’t been through so much in my life I’d be screaming. Maybe I should scream. Foot doctor once said I needed to learn to put on a show,

I’m either going to die from a brain bleed or I’m not. If they gave me a CT stat they could stop it. Instead, they’re gambling that it’s not a brain bleed, and using the fact I ubered here and walked in as evidence that it isn’t that serious.

If only they understood how tough I am—

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