Happy New years.. I guess

Sorry it’s been a couple of weeks since I’ve written. Nothing has changed for the better sadly. Everyone, including myself, has been sick on and off with Bella staying pretty much consistently worse. She’s now having anaphylactic reactions, and we’re not sure what exactly from. Her throat has been closing making it hard to eat, drink, or even breathe. I stopped even counting the number of ER trips, doctors office and Urgicare visits just to be told they’re not sure and it’s likely a virus on top of everything else.

Just last week we went to Urgicare to try and avoid the ER. They caught Afib and had to call an ambulance right away who confirmed Afib. Only to somehow not be in afib anymore when we got to the hospital, where they took blood and gave her fluids and sent us on our way. Her still in unbearable pain. No plan, no new meds, just “good luck”. Throat closing, “I don’t know”.

Bella in the ER in more pain than ever before, whole body feeling sick and no answers for any of it.

We’ve all been down and out on and off while, we even tried to go camping in the trailer. I spent two days cleaning and packing safely to minimise any type of contamination from the house. Only to get there and find out there’s a gas leak for the heat and we had to come back home immediately. Just going out to the trailer was almost too much for Bella to handle with us having to pack back up and go home making her much worse.

So I cleaned the spare room best i could. I cleaned top to bottom, disinfecting every part of everything. Turned the water heater to max and bleached her sheets, pillows, and blankets. And the door stays closed, heater vent blocked, Windows opened. Sleeping with hot water bottles all around her to stay warm. It’s freezing in there constantly, but it’s better than whatever it is causing her throat to swell. All just in case it’s something in the house like mold or dust, even with my constant cleaning. Isolated best she can, but every time she needs something or i have to give her meds, the door opens and she feels worse. So for the holidays she’s been alone in a freezing room, just to try and feel ok at best. We’re just trying to make it through the days anymore.

So now on top of fixing the electric and brakes on the truck, i also have to fix the gas lines on the trailer so we can use them and make it out to anywhere we need to for Bella’s doctors and treatments.

I just feel like the universe is piling it up on us, and every time we make even a small bit of progress it throws us 2 or 3 extra things we have to do in order to even inch forward. We even saw her lyme doctor l little over a week ago, who still cant find an IV pharmacy to take his orders for Bella, who gave her meds that we cant really use til we get her IV pharmacy back, and of the meds he gave, there is no guidance… It’s all go slow and titer up, but we more or less have to figure out her tolerances. We have to figure out what’s a side effect, what’s herx vs allergic reaction, and her dosing schedule to figure it all out. These diseases are just hell.

I just want to write the post where she’s finally better already. This is no way to live, and though i do my best to keep us all ok and to keep us going, it’s just getting harder and harder with how much is being thrown at us. We cant even share this blog on social media because they’re all censoring anything that has to do with Lyme, vaccines, and other BS. So much for free speech.

We’re doing what we can slowly to try and get Bella treated on our own. We’re still waiting to hear back about our mortgage adjustment to try and save the house, but it’s not looking good. We may be forced to living in the trailer soon, and without them fixed idk what to do. Hopefully everything works out but the way things tend to go for us, who knows.

Sorry today’s post was a bit depressing, it’s just this illness is never ending, there’s no easy way to treat it, and everything is just progressively getting more and more shitty. Pardon my language. Im just tired of it all, and want to just make her better, but Unfortunately even with the correct treatment it’s going to take time.

Just trying to make it through the best we can

Thank you for reading and bearing with me. I’d ask you to share, but you cant link the site directly or in a picture, but if you can please do. Happy New year, hopefully this one is better than the last. Hopefully this one we can get her better. Hopefully we can all get healed and move on from this.

Love you guys, PS for any of you with TikTok, not only does Bella watch that to distract herself when she’s in bed unable to move much, she also made a video and im going to share the link, I’m not sure how often or how much she’ll make her own videos but worth a watch and to keep an eye on if you’d like.

https://vm.tiktok.com/CHKY7x/

With love, Brett

Savayah was throwing up every 20-30 minutes, wouldn’t eat or drink, and had to go to the ER… Virus of some sort. Luckily She was back to normal 2 days later. Also this was Christmas day.

2 thoughts on “Happy New years.. I guess

Add yours

  1. Just reading thru your posts. All I can say is wow. I have Lyme Disease also but am not any where close to Bella.
    I’m not a doctor, I’m a paramedic.
    First things first and you can take my advice for what it’s worth.
    If her airway is closing, what seems to be causing this? You need to stop anything and everything if it’s medication that’s causing it. If it’s the disease then the ER is your best bet or she will die
    Secondly,
    In the Lyme world people are using disulfiram. Look it up getting good results for Lyme patients.
    Again like I said these are options you could try and like I said I’m not a doctor. Confer with her doctor before doing anything as for medication. But look into disulfiram PLEASE!!!

    Liked by 1 person

    1. We’re trying any avenue we can. Talking to her functional med Dr and her LLMD both said disulfiram could be an option, but she probably wouldn’t survive with how bad her case is. It’s harsh on those who have tried it, and comes with many side effects due to the die off and toxins released, but I’m sure soon enough it may be what we turn too, but we want to try the antibiotics and anti parasitic meds first so hopefully she can get to a point her body can better tolerate the disulfram.

      Like

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