Can’t help feeling hopeless…

Hopefully this all makes sense. I haven’t been sleeping well at all, as well as very little.

More and more each day we lose faith. Every single day we reach out for help, hoping the doctors will finally do anything. We’re losing our battle and there’s nothing we can do.

I didn’t make this but God does it ring true.

The welts/hives are still coming and going. With no indication of what is setting them off. Every day Bella’s throat squeezes tight, and every day we hope it doesn’t close completely. Every day she’s covered in itchy, painful rashes and welts, with nothing to help with them. Somehow the allergist Bella saw prescribed a medication that Bella is Definatly allergic too. Luckily the pharmacist caught that one, said hell no and told us we need to get an epi pen and goto the ER… If he only knew.

Lips are even swollen and an ER said to put on her brace to try and alleviate pressure on her neck.

Bella had a high Ddimer test (blood clots) of 1850 with the range being 500. Also very low potassium. So her doctor said to goto the ER immediately, and we did. The ER doctor came in asking what 1 thing she could help with, as Bella was in pain from head to toe with full body rashes, a very closed throat and the blood testing that came back, both of wich very bad. She left to call Bella’s PCP, who said for her to go in, and the nurse came in with fluids. The fluids could make her potassium level even lower, and we asked to have her levels checked. When the ER doc came back in she sent us home. Saying that she wasn’t going to run tests, it’s all chronic.

Since Bella has had high Ddimer levels in the past without a clot in her lungs, they’re not going to look for one now. Also not going to check potassium levels, just prescribe pills to correct it. Which we already tried to do at home naturally, and too much potassium is also dangerous… But no testing and sent home to deal with it all on our own. Since then Bella has been bed bound feeling worse and worse, and we don’t know what to do. At this point it feels like blatant denial of any care, and no matter how much she needs it, or even at her PCMs behest there’s no help even in an emergency, and it’s scary as hell. We even decided to ask who is preventing her care, as every time someone starts to help or looks into helping its stopped. Even at the ER as soon as they call her PCM or whomever they come back and say they can’t or won’t do anything.

I don’t know where there was a threat in the email, maybe sitting in the office hoping for care? But as you can see instead of addressing the issues or suggesting a plan, it’s blaming us for their lack of care.

Somehow when going to pick up her epipen, it needs a prior authorization to be filled at the pharmacy. So we can’t even get it right now as an emergency rescue if her throat finally closes all the way, and it keeps getting dangerously close. I don’t know how everything is stacked against us so damn hard, but i feel something like that should be covered regardless. It’s fucking heartbreaking at every single turn. We have no where to turn.

My heart breaks every single time she cries in pain with us unable to do anything about it. No help from those we entrust her care too. We don’t even have the needed supplies to keep her PICC line and Port clean and safe to use. Running out of the pieces and parts we try to scrape together and try to afford online and take a chance with. Bringing up these concerns yet again, to her PCM, and saying Bella is unsafe at home, vitals a mess, and no supplies, no meds and body failing, her doctor replied we can try to find care elsewhere. Almost feeling like a mocking threat because there’s no way she can start over somewhere new, let alone make it somewhere new. Sure he’s been “trying,” intermittently, but making 0 progress on anything Bella is still unsafe with nowhere to go.

We learned of palliative care, which was never offered and could possibly help us with all her services she needs. Even nurses and caretakers to come out, that may allow me to be able to go back to work and save us from losing everything. Asked our doctor to order it, and he said he would…

Palliative care was denied because Lyme wasn’t on their list of diagnosis, and we have to do the legwork to try other places, where im sure they also won’t take her at this point. It feels like a damn conspiracy theory, like someone higher up is telling everyone to not help in any way, and as hard as we try to find an IV pharmacy and now a place that might help with palliative care, plus be our own doctors and save ourselves, it’s just feeling more and more hopeless.

Here’s the audio of our phone call to see why palliative care was denied at the link below. Her illness doesn’t qualify apparently…

https://www.dropbox.com/s/5yxf4lv1k20q7qp/CALLX_4-1-2020_17-18-7_Private.mp3?dl=0

Oh and we finally heard back about our house and they denied our package, so we’re back in the foreclosure process with no way to save our home. It was a nice day leaving the ER, refused care, and getting that call on the way home. I don’t know what to do, it’s all just piling up on us and we’re being crushed. On top of Bella fighting for her life daily, we’ll soon have nowhere to stay or call home either.

With the camper and truck both out of commission, we don’t even have that option when we finally have nowhere to turn. Luckily the process can take a while, and hopefully i can find a way to stop it and save the house, but Im going to do my best to fix them both before we’re kicked out and foreclosed on. It just all costs money we don’t have. More and more life is kicking us while we’re down and It’s just starting to eat away at our spirit something fierce.

Every single day as she lays there in excruciating pain, she asks me what to do. I have no idea, because i don’t have the power to do anything. Everything we try doesn’t help. Nothing helps the pain or pressure. Nothing makes her feel better. No doctor is doing anything but her PCM who says he’s “trying”… We’re told we’re being unreasonable because nothing is safe, no treatment is being given, no IV pharmacy for her meds or even supplies, and we’re denied care in situations we can’t handle at home, but we’re asking and pleading for help. Asking for help from her doctors to get even basic needs met makes us rude or unreasonable… It’s all bullshit and i have no clue what to do next…

Bella’s last appointment with her PCM was Thursday last week, and her social worker called in on the line. She’s also been trying to get info from the doctors office for Bella’s medical equipment like a wheelchair or bedside pulse ox, and not getting a response. She listened in as all of our concerns went unanswered and pushed aside. Still, even after having asked to send the info over in person, there’s nothing sent from the doctor to the social worker, and i don’t know how to fix it.

Here’s the audio of that appointment for those interested…

https://www.dropbox.com/s/ygvg3vdk7xsrxtz/CALLX_17-1-2020_11-16-0_Private.mp3?dl=0

So we have to do more research to find a program that will allow palliative care for her conditions. It’s always on us to figure out where to get what she needs… We’re not doctors, we have no power, no influence, but the doctors still put it on us to find.

Lately, as a side note, I’ve also been doing worse. Body wide pain and sharp pain in my knees and ankles. Let alone everything else, and there’s nothing my doctor can do but write referrals. Lovely VA policies and procedures. Hopefully I’ll be able to make those appointments as well, because if I fall out we’ll Definatly not make it. It makes every single day harder than it already was, but we all push on.

We’re being failed on all sides. Simple as that. We can only do so much and those who are supposed to be in charge of her treatments, and her health, aren’t doing anything.

Sorry Im writing this through a headache while trying to take care of Bella the best i can. Im just so tired of fighting, and even though im going to continue every single day, its just heartbreaking. Everything we do seems in vain, and then it feels like everyone is blaming us and no matter how much we plead and beg for help, it just isn’t coming…

Thanks for reading, we’re doing our best to show everything as it happens. Bella may start writing too if she’s able too think straight enough to get through it. We’re trying so hard and screaming for help. What else can we do?

Also quick update/edit that just kind of came to me. Her doctors have been saying that Bella doesn’t have Lyme due to their policies. Saying the testing that came back positive from multiple labs including their own are false positives or only indicate a past infection, however for all her services including palliative care and IV pharmacy it’s her diagnosis. Instead of unidentified chronic illness, which is what they usually say it is. Either that or they simply don’t know… Hmmm….

One thought on “Can’t help feeling hopeless…

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  1. I am slowly reading through your blog. I have faced soo many of the same things. I am in Indiana. I have Dysautonomia and am trying to get tested for Lyme. I also have Adrenal Cancer and multiple other health issues including cardiomyopathy from the constant high heart rates. After all the misdiagnoses I feel like I have PTSD from medical ignorance and being misdiagnosed. Whomever you were speaking to in the phone call made me livid. She has the same mentality of so many others. “We don’t know what’s wrong so go to a psychiatrist”. Unbelievable. I am so thankful you guys are bringing light to this. BTW – I have Mast Cell Activation Syndrome. I wondered if your hives might be the same.

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