I’m switching gears. I have been neglecting the blog and not really updating because of the fundraiser on FB. However since I’d like to keep this going as a more solid chronicle of our life and struggles, I delegated FB to Bella when she can, and I’ll do more constant updates here. So instead of a long one every once in a while, It’ll be closer to every other day or so depending on how much has happened. They may be shorter, but it’s easier to keep it going and stay engaged. And without further explanation of my actions, here’s a little about what’s going on lately.
As I’m writing this Bella is curled up trying to stay calm, her heart is hurting. She’s having pain making it hard to think, eat or drink. She feels hungry but nauseous. So awake but wishes she could just sleep. Anyone else would be in the ER. I’m pretty sure if i felt half of what she did I’d be there. She’s just coloring, trying to keep her mind busy and off of the pain, even if it isn’t working well.
It’s been a rough few weeks. We’ve been fundraising to get Bella some tests and scans, and travel to get to where we need to get the tests and scans… It’s not fun, but needs to be done. While she hasn’t been well enough to travel, we’re still on the grind out here. Researching constantly. Multiple doctors appointments a week to try and get a lead or help in anything. We finally got her PCM to prescribe her long term antibiotic and we’re now on schedule, and she’s doing better and worse in different ways.
It’s almost regressive with the treatment, but not in the traditional sense. She’s no longer going paralyzed or having nearly as bad headaches, but she’s staring to have the chest pain again hard. I want to take it as a good sign, even if it sucks hard.
On top of that and the stress of our last ER visit, we do our best to keep her home, even past our threshold. For those of you who don’t know, Bella usually makes a list for every doctor appointment and ER visit, so she can remember all symptoms or topics she wants to bring up, and sometimes there’s suggestions of tests she may want. Our last ER visit was because she may have had an ovarian cyst burst, it was very painful in that area, and when it’s that painful we need to check it out to ensure it wasn’t a rupture or still bleeding. So we had one of these lists. The PA who saw came in, was looking at it talking to us, and seemed to agree with our suggestions, and left. We assumed to order tests, and when almost an hour went by we paged a few times, and finally the Doctor came in with the PA we saw, and said something about them possibly pressing charges on us and had the hospital police officer there with him. I guess somehow with the list the PA and the doctor took it as Bella trying to order her own tests and practicing medicine without a licence… It didn’t make sense to the cops either and they dropped it, but we got no help, and when we said we were just going to go to another ER, the PA called and basically said not to help us. Little iffy on going back after that, especially since there’s nothing we can do about it unless Bella were to die.
It’s bullshit, but an added stress. We don’t know what to do anymore if things get too bad. We do our best to wait things out and there’s so many times, including now, where she needs to go.
All this time, in between the doctors and stresses of life, we’ve just been trying to get her stable enough to make the trip to Maryland and New York to get special tests needed in determining or ruling out CCI and/or Lyme. We’ve also sent out a blood test to Germany to have her blood tested for the bacteria rather than an immune response since we’ve proven her immune system is kind of turned off at this point. Bella’s infectious disease doctor put it the best saying she’s abnormally normal. Even when she’s had confirmed infections and various illnesses, she never has a fever, and her white cell count is always perfect. So she has an immune system, it just doesn’t seem to react to anything. And the tests used to determine a lot of things is based off an immune system reaction, and unfortunately the ones where they test the actual virus or bacteria or whatever it may be are all out of pocket… super fun stuff.
Sorry I’m a little distracted while writing this, I keep running around to grab things, or to help Bella, so I may have to finish writing everything I was going to try to get out in this one tomorrow. Happy Easter everyone, please share and follow. #helpthehero