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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Noah and I were talking tonight about how much his medical case has evolved over the years — thank y ou very much :)

Noah and I were talking about how much his case has evolved over the years, and as time passes we continue to learn more, which sheds new light in different directions.

Specially, we were talking about Dr. Bute’s report from seeing Noah in August 2018, then Noah’s lab results from Jan 2019 that clearly show an immune dysfunction — it might not be a glaring dramatic dysfunction, but it’s a dysfunction nevertheless.

And that lead us to talking about how when new information comes along, it naturally changes how we approach any medical case.

Noah had a very good point — the frustrating thing about his case, is that the best evidence is seen through observation (like the ER doctor who thought Noah looked totally healthy, but then Noah had a positive flu culture—I guarantee that ER doctor now understands both the complexity and the severity of Noah’s immune deficiency),

so the doctors who don’t see him as often don’t have as much information as the doctor who do.

I told Noah to never give up hope, there are great doctors who listen, doctors who will accept the facts as you present them of what happened to you at home, etc, and not dismiss them, to keep faith and one day the answer will get there 🙂

Thank you for being there for Noah for so many years. As his time with you comes closer and closer to a close, please know how grateful I am for the care and attention you’ve given him.

Warmly,
Tara

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The change in my sweat just writing the email—

Just as I hit send, I got hit with another wave of sweat—it’s literally dripping off my face. Yesterday and today are the worst it’s been so far —

I’ve been through a lot over the years, and this period is turning out to be one of the worst. This fatigue is like nothing I’ve ever felt — yesterday Noah was home sick from school, and he spent most of the day getting medications for me, hanging medicine, bringing me food, etc. All I could do was force myself up to go to the bathroom, and that wasn’t easy….

My blood pressure is pretty low (92/56), but while I was feel crappy when my bp is in the low 90s, and I never felt this bad before —

If I thought they could do something for me in the hospital, I would be there that’s how bad this is, but I don’t think there’s anything that can be done for me there…I know I need some imaging studies, maybe that will give some answers (?) Or maybe I’ve gotten a weird virus? Or could this all be menopause? 🤔

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Vicious cycle of hot sweats

When I come see you next week, I really need to talk about these hot sweats…they seem to be getting better last week for a couple of days, then they got worse, and this last few days have been super bad.

I get really hot and sweaty, then I get really cold, and for some reason I’m super fatigued — like can’t get out of bed fatigued. I was supposed to go to Cedars this morning and do some bloodwork, but it’s gonna have to wait until Monday…

I hope you’re doing well 🙂

Warmly,
Tara

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Hot flashes are super intense and I get really sweaty

Is there anything we can do for hot flashes? Can they be related to my blood pressure problems?

They keep waking me up so I’m having problems sleeping too. A flash will hit, I’ll get drenched, then I’ll have the worst chill I’ve ever had, all the way down to my bone. Aunt Shannon bought me an electric blanket, which is great for the chill part, but the hot flashes of course I have to throw it off of me…

Then Cookie jumps on and licks me, lol. She can’t get enough of this Tara sweat 😬.

I’ll ask Dr. Pitchon the next time I see him, but please ask around if there are any blood tests I should do, to make sure these are menapausal and not something else —

(If my blood pressure gets worse and I end up in the hospital for a few days, I guess we can all do it all there too.)

I can barely walk around anyway right now, but these hot flashes would be too embarrassing to go into public anyway…when Nurse Joseph was here last night helping Noah, I had a bad one right in front of him, and he was like “wow”, and started recommending doing some bloodwork to get hormone levels, some Jamaican herbs and a bunch of fluids and vitamin B for my blood pressure…

I’ve never had anything like this. In fact I rarely sweat, like, ever — Noah and I talk about how we rarely sweat —and now it’s like multiple times an hour 😢

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