Sorry about that.

So I was supposed to write again the day after my last post, but I wasn’t able to get to it. ER sadly. Then I hurt and exhausted myself doing yard work trying to make it look half way decent, not smart without the right tools. Then more stuff, and I got sick pretty bad last night… So there’s my excuses, but I promise if i was physically able too, I would have. I’m still pretty sore all over, but the show must go on; or something like that.

So I forgot what I was going to add on too, so I’ll just get into the last few days, because on top of my issues, we still are dealing with Bella’s. Her neurological symptoms are getting worse. We had no choice but to go to the ER the other day. We dreaded it and it took a lot of talking ourselves into going to get there but we did. Never going back to Southwest since they called the cops on us for practicing medicine without a licence or some BS because she wrote down her symptoms and possible tests to help last time. Cops said there was nothing criminal about that and no charges are going to be pressed, so that’s good, but we were also refused treatment after that and treated very poorly. Also what Bella had suspected was correct and if they would have helped at the ER it would have made our day much easier and shorter. We got lucky an OBGYN had an opening and we were able to make it there in time.

This wasn’t as easy as it sounds. For this appointment we first made another. It was in Lakewood, confirmed on the phone as we were leaving the ER. We drive all the way there, to be informed that we didn’t have an appointment. The doctor was covering for another doctor and whomever we talked to was mistaken. We were able to make a last minute appointment from there in Elyria but had to leave right away to hopefully not be too late. When you’re in a hurry, every other driver anywhere is the worst thing ever.

So there we confirmed Bella had some ovarian cysts rupture, she had two cysts still there and there was free flowing fluid in her abdomen from a third that had burst, causing the pain. It sucks but luckily it didn’t twist her ovary, or keep bleeding internally, or a multitude of other bad things we just wanted to be 100% sure didn’t happen with the amount of pain Bella was in.

Anyways back to the most recent ER visit. We have to drive a bit further, but I think this had been the best ER visit we’ve had in quite some time. It didn’t start out that way, we were waiting before we got a room for about an hour and a half. We found out because, the gift that keeps on giving, the last ER visit the doctors that called the cops on us also put into her file, Drug seeking behavior, when the only time Bella has ever taken pain medication was her surgery and even then she didn’t take them past the first day. They put in that she was schizophrenic and had major depression. Somehow the PA and Doctor that refused to treat us, were able to diagnose things the psychiatrists Bella has seen couldn’t. We’ve already contacted the hospital and opened an investigation for this, it’s horrible.

The Doctor we saw luckily looked at her file rather than just the long list of problems, and didn’t weigh too much on those new Dx. He happened to have a brother who went through the same thing Bella did, and was very nice and understanding. Also while there some of Bella’s speech started going mid sentence talking to him. It was the first time a doctor was able to observe it as it comes on, because until that point it’s mostly been just them trying to understand from how we describe it. if that makes sense. We made sure he noted it in her summary of care so her Neurologist can help with this aspect of everything else. Mid sentence her words started getting drug out and longer randomly. Some wouldn’t come out at all, simple words she would forget. She started crying unable to get what she was trying to say out. It was heartbreaking on a deep level. So upset she couldn’t tell the doctor what she wrote down, and she had already been able to tell the nurse coming in… I hate it all so much I wish I could just find a way to make her better. The doctor apologized when he couldn’t find anything emergent as the cause of her pain and system acting the way it was. So we took her home and did our best to get her OK again. Through talking with her doctors we tried out a steroid, and it’s helping ease her headaches, and give her a little more ease. The last few days since haven’t been much better for her, but we’re slowly getting her back to a more comfortable level of everything. Hopefully it was a part of an adrenal crisis, and the steroids help get it all back on track again, or else it may be a longer term needed med.

Moving on from that, we had to pay for a few tests functional med ordered, and with my school messed up right now and us going so long without a home health aide, we’ve lost almost half of what I was able to bring in for bills and food and as much other we need. Sadly we’ve had to tap into the funds we’ve raised thus far for her testing in DC. We also got charged almost $800 for a test that had to be sent to Germany and was returned after it arrived there and we’re still trying to figure out what’s going on. Luckily the lab guy who took the samples for them is awesome and trying to help out talking with the lab directly. We’ll see what happens with that, it’d be nice to get our money back, but more likely they’ll just resend the test kit. There’s also a Marcons Test we had to pay out of pocket for, which I don’t understand why it wasn’t covered, but that was needed and I hate how expensive this all is. I’m run ragged, trying to sell blood again if I can carve out the time just to make a little extra every few days.

Had to get the truck fixed up, making a knocking sound that’s pretty concerning. Our neighbor owns a shop and is looking at it for us and going to help us out as much as possible, but depending on how much the repairs might cost, I don’t know if we’ll be able to afford to fix it. Everything is building and though there is a ray or two of sunshine here and there it’s damn hard. We’re mostly holding out hope that even though the symptoms are horrible right now, maybe it’s the part that’s worse before it’s better, or something like that. I’m pretty sure I told my theory already, but in case I didn’t it’s basically the med’s are starting to help. This is causing her immune system to start back up, so to speak, and maybe it’s over reacting a little since it’s been kind of asleep for  awhile and woke up to hell breaking loose. More or less causing inflammation all over the place, causing the pains she’s feeling, and hopefully it doesn’t last like this for too long because it is so rough to watch, I couldn’t even imagine how it must feel for her.

Basically our trip is on hold for now until we can get Bella well enough to make it to DC. And we need to raise money again somehow. If she was a bit more stable I’d be looking for work already, but unfortunately it’s not possible without an aide and with her so unstable 😦 Most people’s aspirations are to retire and live a decent life free of worry. The most we could ever ask for is to be well enough to work so I can take care of everyone the way I need too. I hate this all so much. Please let the medicine work, and let this all be behind us.

Sorry about that, it’s been a hard week. We’re down from how hard it’s been and trying to get a win in but it’s not a winning time. Just trying to spin it to keep the hope alive, on top of seeing the doctors closer to home. The 8th we’re supposed to see the Lyme doctor out here. He’s stupid expensive and we don’t have the money to see him right now without raising more money. Worse part is, we’ve already paid a $400 deposit, and we lose that if we don’t make the appointment. The stress just keeps piling and I’m hoping I can pull something out of my ass to get it all done and us OK for a while longer… I’m so tired of this fight, but I gotta keep it going any way I can.

I hope that’s everything I wanted to get out. I’ve got a week or so to raise $1200, so please if you’re able to donate, I will be forever grateful. If I win the Lottery, or ever play, my winnings will be shared with you. Please share this far and wide, you’ll be my best friend. I promise I’m going to update often, from now on, likely daily because everything tends to be pretty non stop. #helpthehero if you wanna follow or share on IG, FB, or the tweety bird thingy. Sorry I’m not that organized, and I kind of trail off at points, I’m still hurting from my overexertion and sickness, I’m just trying my hardest to get the story out there and hopefully make some progress to remission or cure. Rare is expensive. Hopefully we can get this legislation passed, but that’s a whole other story.

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Here’s a cute picture I captured when Savayah was coming up to visit mommy. Please donate and share if you’re able. Feel free to contact me through the link or on social media with any questions.

With love,
Brett

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