Have you ever been told you’re going to die? If so, how many times? In the last year alone Bella has been told those words by doctors eight times. Either out of frustration, or because they don’t know how to help, because they couldn’t keep her without knowing how to treat. She’s been discharged from the hospital with vitals that would get anyone else admitted. Her chart has been changed so they don’t have to check when her heart is beating in excess of 150bpm laying down, not moving. Because she’s “stable” even if it’s high… Discharged because without knowing what to treat for or what to look for they can’t justify her being in a room, under constant observation. With no one to watch Savayah, sometimes we have to spend the night together in the hospital, hoping we don’t pick up something else while we’re there. Has this ever happened to you? Sadly these days it’s our normal.
We take so much shit from people because Bella doesn’t look sick. She pushes herself to the limit just to look normal most days, even just for a drive around the neighborhood to get out of those four walls. How many times has a doctor given up because they don’t know what to do? Sorry to start off tonight so depressing, but this is our reality. Being told they can’t treat for what she’s tested positive for because it’s controversial. Lyme carditis, which the CDC says treat immediately, has gone untreated because it’s against their policy to treat for anything more than a month when it comes to lyme, and though there’s so much proof by so many people and researchers, there’s no protocol past the first month of antibiotics. To have a positive blood test for a candida blood infection, that even when caught and treated still has a 50% mortality rate, but since it’s controversial, and very rare, no one even mentions it. When we catch it and call the doctor, they say with that level she should already be dead, and would have been if we hadn’t been accidentally treating for it here and there for common yeast infections. Maybe the blood infection was why they were so constant… How many times have we seen her doctor wish he could help us, but his hands are tied by policies set forth by the hospital…
We’re fighting. We are treating these things so long after they could have been avoided with help of a stand alone office, that isn’t afraid to help her. That have doctors and nurse practitioners that have even had a few of the things Bella has gone through, that is working with her normal PCM to ensure she survives. These aren’t even the big unknown cause we’re looking for. Though after treating them the last 6 months and the last 3 weeks respectively, she’s been more stable overall. Still in pain, but able to stay home more. Her autonomic system is a mess, and it’s affecting her autoimmune system.
As I write tonight, I’m not in too great a place. I’m tired, and upset, and just thinking back on everything that we’ve found and treated, and fixed just hasn’t been enough. They don’t know how to find what’s causing everything else, and don’t know how to treat what they can’t find. Things that worked well in the past to give a good day or two, no longer have any affect. She felt better because they were treating a co-infection, but her normal is someone else’s emergency. When you see her smile, and make up on in public, wearing “normal” clothes, she’s hurting more than you could fathom. If she’s walking, believe the next few days will be on bed rest, but that feeling of normal for her is worth every last step. As much as I want to protect her from the world, and just have her confined to bed until we can figure this out, it’s no way to live. Especially after the last 5 years, she’d go insane.
People tell me how good of a man I must be to stay and take care of her. I find that insulting. What kind of husband, kind of man, would leave her alone when he loves her. So many people have openly told me they wouldn’t be able to do what I do… How weak of a person you must be. To even think of what she goes through, I’ve got the easy job. Yes I get tired, and annoyed, and sometimes I’m an asshole, but I’d never for a second think of leaving because it’s hard. Life is hard, and in our case the settings are broken, and most people wouldn’t be able to survive. I stay because I love my wife, and she’s so much stronger than I am. I stay because I said in sickness and in health, and I meant it. I’m here because this woman deserves the world, and it’s fighting her hard. She is the person I know could change the world if given the chance, and I will do anything and everything in my power to give her that chance.
I’m not a good man because I’m putting up with everything in our life… I’m just a person who’s in love and hates to see his wife in so much pain. Time is relative. 5 years is nothing if I can make her genuinely smile for even a second, in this shit we call our lives right now. She’s worth a 100 years of this if it comes to it, and I’ll happily be there till the end when she’s better, even if for some reason she were to leave me the next day, because she’s worth it.
Sorry for the rant, I’m just tired of how people see the world, and I wish for a second they could even understand what I just wrote. This post is here for the night, but it’s not to inform on anything anyone doesn’t know already. I’m just a husband, and a father. I’m not a good man because I’m here, I’m just a man of my word, and it sickens me to think that anyone else would leave in my same situation, because it’s too hard on them. It’s selfish, and that’s not what a relationship is. I write this for now, but there may be another post tonight, to show a bit more of the story. I didn’t mean for all of this to come out, but as soon as I started typing this is what came out.
Stay tuned, I apologize for the rant, and please share. #helpthehero on Facebook and Instagram. If you’d like to donate to our RV and travel fund to safely get to all the hospitals and doctors she needs to see for a chance at a normal life, please donate. The link is on our homepage. Thank you for reading and bearing with me, I get passionate about the way people think, especially when it’s about this. Have a nice night, and again please share.