Sorry I haven’t written in a while, it’s been a crazy tiring and busy last couple of weeks. Nothing too special to further our case, but we’re working on it.
We’ve been sick with some sort of annoying virus. So on top of everything else, everyone’s been extra crabby and savayah hasn’t been sleeping well, meaning I’ve been getting maybe 2 and a half hours of sleep a day tops. Luckily that part is finally over, knock on wood, and Savayah finally slept through the night. So I’m still tired and in need of catch up sleep, but I’m a little more coherent and able to actually sit here without falling asleep before I even start. Our time has been filled with ever more pain and disappointment from doctors, and a few other things that happened with Bella’s family.
As most of you know Bella was hospitalized a little bit ago again, and the doctors discharged her, literally saying they don’t think they can figure it out and no one in the hospital will be able too. Discharged home, a little worse for wear. The “rescue” meds stopped working or having any effect the next day, and it’s been a struggle since. Once an ER didn’t run a single test, the doctor came in, called her PCM and came back in saying they can’t help, try somewhere else. We tried to push through a few days, and then tried to drive to a main campus ER and still got discharged worse than she went in, after trying to push through it for days. It’s been hell, with no relief for Bella. The collar we ordered to immobilize her neck and support her cervical spine has been the only reprieve we’ve had, and it mostly just makes life barely bearable for Bella. The symptom relief, however does help point in the direction of CCI as the main function of her ME/CFS. Which is fixable with surgery, and could possibly be the answer to fixing her overall condition.
Unfortunately the scans we need are hard to get, and there’s no place in Ohio with the correct equipment. The closest is DC and it’ll be out of pocket for the scans, and that doesn’t guarantee we’ll be able to be seen by the right doctors to interpret the images, since there are only 4 specialists that can show or diagnose it… We’re constantly working on it, as well as trying to find doctors that have similar specialties, that at the very least might be able to consult one of the others, helping move things along with a specialists referral, and possible insurance to cover the visits, but since it’s out of state it’s a long shot either way.
So we’ve been raising money for the trip and scans, mostly on FB, also trying to get over this sickness and in and out of the ERs because as much as we know they can’t do much, there’s a possibility they can, and sometimes it gets to be way too much for us to handle at home.
On top of all that, trying to get better and stay out of the hospital, Bella’s uncle died of cancer, and her grandmother fell and hurt herself pretty badly. Bella isn’t too close to most of her family for various disappointing reasons, however her grandmother raised her like her own, and it’s the one person who has always made Bella feel safe and have that feeling of home. She’s old and lives on her own, and we wish she would just move in with us, but she’s an amazing old broad. Bella was close with her uncle as well since she grew up and he was always around, and though they weren’t always visiting or whatever, they were still very close. So we’ve been emotional and stressed and searching for answers on so little sleep it’s just getting too overwhelming.
We’re going to beat this, and I feel so close. These last few obstacles will be pretty tough to figure out, but I know we can make it through, we just gotta last that long. Every day, even starting to get over this sickness we’ve all had, Bella has been in a living hell. Most of the time being so severe, and nothing working to help, that she has to force herself to sleep so we don’t have to go in to the ER, knowing they can’t or won’t help. Headaches so severe, she said cluster headaches we’re almost a walk in the park. Heart rate is still all over the place even after the ablation surgery. We’re hoping it still helps and wasn’t an unneeded procedure.
I think I may have back tracked a little bit, but I’m not sure what I’ve written here and on FB at the same time, so I apologize if I’m repeating myself. I also had a bit of a break down yesterday. Too much at once, and i was running so late for school, and everyone needed something while I was rushing too hard, and I had to take a minute to stop, I got a bit overwhelmed and did my best to finish off the morning and get savayah dropped off, and I’m not sure why but I started cleaning, and i’ll be damned if the house isn’t the cleanest it’s ever been in quite some time. I needed to get a win in even if it was just getting a task done fully and correctly. I’m ok today, and I’m sure the sleep helped a bit, so sorry to include myself in all this, but it’s relevant with everything else building now too.
Her uncles funeral is Saturday, and we’re hoping she’s strong enough to make it. It’s really important to her to be there for her grandma, who’s also hurting physically and emotionally right now, and Bella’s been too sick to make it out to see her. It’s just a hard time overall, more so than usual with everything external going on. So I apologize if for the next few days or so you don’t hear much from us, it’s a bit rough out here.
So our plan of action once we’re a little stronger and able to make the drive is going to DC to get a special scan that will be out of pocket. May have to stay the night since it’s about an 8 hour drive one way, but we’ll see how well she does and how much the scan might hurt her body. It sounds worse than it is, but it’s needed to show certain positional effects on her cervical spine.
From there we get the images reviewed by a specialist, one of which we can pay a consultation fee and send him the images, and he can give the diagnosis, which we can use to schedule the surgery with the specialist we choose. Attempting to get it covered specially by our insurance since there is no specialist in ohio with the qualifications needed. If not obtaining insurance so we can get it scheduled.
Then it would be surgery and recovery, but it’s still possible this isn’t the answer. It’s just so dead on I have no clue how it couldn’t be. Other peoples stories almost exactly like Bella’s with the end point after years and years being this very thing. So many similar stories we feel less alone, and more hopeful, and so scared if this isn’t it, we will be out of options.
There’s still the ME/CFS clinic in Stanford but that’s going to be a gruelling long term trip we have to adequately prepare and save for. We’re trying our best every day, struggling, I promise you all. Not an minute goes by where we’re not trying to get past all this and finally write the post saying she’s cured. We look forward to it, and hope to make the breakthrough feeling so close to the end… please pray for her.
From there I’m going to end the night. I’m still pretty worn out from the day, and need to try to rest in case today was a fluke, but I promise to make an effort to keep posting the updates here and ensuring a bit more consistency. We love you all for sharing and donating to our medical fund. you’re helping save Bella’s life and we don’t know how to repay you. More to come. please share far and wide, and if you’re able please donate via the link. You can find more updates and some of the story on Facebook following #helpthehero. Have a lovely night, and sweet dreams.