I’d like to start by apologizing for not writing in a while. It’s been a very rough couple of weeks, and I’ve been so tired. Just tonight I’m running on maybe 2 hours of sleep, and no real rest. We’ve been in and out of appointments and the ER to find that Bella may have had a few ovarian cysts burst, we all picked up some bug, and Savayah isn’t sleeping well through the night. Also, somehow, Bella strained her thoracic spine, causing a whole mess of pain, that a few doctors didn’t know what it was, until the ER discharged her and it was in the discharge papers as a note from the radiologist. Even at this moment, she’s on oxygen, hoping to alleviate a migraine that has her completely incapacitated. Everyone is on antibiotics, and we’re working through it.
I’m using this blog to try and show a bit more than anyone would see just looking at Facebook, or what someone might see if they come over or meet us. We rally and try to push hard when people come because we tend to be so isolated with everything going on. There’s a few things I figured I should say blantantly, just to make sure it’s out in the universe so it can’t be misconstrued. I know questioning usually comes from a good place, but here’s how it is:
Bella is seeing anyone who can do anything to help. We have specialists working on her case around the country. The tests we’ve had her take show proof of everything she’s going through, and though some hospitals and institutions can’t treat her due to their policies, we’ve done our best to find doctors who would. Yes our lives seem like there’s an unbelievable amount of things going on, and if we didn’t go through it, I doubt I’d believe it either. Some people like to think it’s all in her head, and we know for a fact it isn’t. No only has she seen therapists, you also can’t fake blood results and genetic testing, showing that she has allergies to so many things. The tests that have shown blood infections that are so rare the doctors though she should have died a long time ago if we hadn’t already been treating it here and there on accident. The care I provide, the meds I administer, and the many appointments we have are the reason I’m unable to work. We have doctors notes explaining exactly why, and are in the processof changing Ohio’s legislation so that I can be recognized as her home health aide, and be paid for it rather than having to get a random aide from the agency; that usually causes more stress than it alleviates.
It’s also why I’m making my college work in graphic design and marketing so I may be able to work from home. I’m learning entirely new skills from my training before so I can hopefully be able to make a living from home as well as take care of my family. I’m using my GI bill to not only get a little income every month to keep our lights on and everything, but also if things never get better like we hope they will, I can still make it working from behind a computer at home if need be.
I’m the only person who sees 100% of what happens every day. The only thing I can’t know is the level of pain she’s in at various times. I’ve seen how many times doctors say nothing’s wrong, and then at the ER later they find an ovarian cyst, or more recently nothing was wrong but at the ER they found she had sprain her thoracic spine. It’s happened so many times I don’t even think twice when she’s hurt, I know it’s true. She’s having pain, or thinks there’s an infection, or a cyst. She’s always right, and there’s always a reason they find, even if they can’t do anything about it unless it get’s much worse.
What most people see is just the cries for help, or her straining to find an answer, but it’s not fear that controls her, it’s just something that happens from time to time. We’ve been battling this for about 5 years now this month, and I know she’s going to get better. I haven’t lost sight of the hope of a light at the end of this tunnel. The only reason I’m home is because of how quickly things can change from ok to complete autonomic failure; and how often she has appointments. At best I’m able to make it to school for a couple of hours twice a week, and with the events of the last few weeks, I may not even be able to do that for too long.
I’m almost at the point I may just live stream continuously so people can see that we aren’t making this up. It may be boring most of the time, because we’re continuously researching, or at the doctors, but people will know for sure that we’re doing everything possible. Also I ask that people don’t worry about me in this. Yes I’m sleep deprived, and on edge most of the time, and I won’t think twice to fight for my family. I’ll easily cut people out of our lives because I don’t need the added stress, but we do our best to love. We still try to help in any small way we can. Our capacity for tolerance is inconceivable, and we do our best to see the best in every situation because worrying about the bad isn’t worth the stress until it happens. We’re smart, motivated, and fighting with everything we are and have to get through it. Hell if we’re able to figure out anything that makes her get better enough, the plan is for me to go back in and finish my military service.
I know this post turned more into a rant like I have before, but I’m so tried I can barely keep my eyes open, and these may just turn into new events rather than the story to now. It’s rather repetitive, but there’s always something going on. We pray for a boring week, or even a day or two. Bella’s birthday is this month, and I’m going to do everything in my power to give her an amazing day.
Some people have reached out with their thoughts, and I know it comes from a place of love, but unless you know everything we’ve done and had done to try and get through all of this, trust me when I say it’s not as simple as you may think. You name the type of doctor we’ve seen at least 3 or more specialists in the field. They all concluded that it’s beyond them, and to seek out higher help, such as the NIH. Some were able to help with minor issues, or give leads to other possible routes of treatment, but so far none have done much to alleviate anything. On top of that we are talking to various doctors at universities taking new approaches to undiagnosed chronic diseases. It’s all shots in the dark, but we’re willing to try anything if there’s a possibility of an answer.
I can’t force people to learn it all, or see it all. I can’t force people to understand, I can only do this, to try and explain it the best I can. Just know that we’re going to keep fighting until we beat this. I know in my core that one day we will. I’ve never been good with words when put on the spot or on tests or whenever, but my family brings out a passion in everything I do. Bella is worth being saved in any way, and I will do anything and everything in my power to ensure she is.
On a lighter note, Savayah has been making progress on potty training, so we’re super excited about that. She’s our glimmer of light in every situation. Bella is fighting to get better to ensure a life Savayah deserves. To be the mommy she needs. It’s a full time job taking care of Bella and Savayah, on top of everything else in life, not to mention school. I probably won’t know what to do with myself if I every actually do get a break. Let alone when this is all over and done. I’ll probably have to take 2 jobs just to ensure I don’t explode from lack of stress lol.
Alas I’m loosing my steam and drifting in and out with sleepiness. I’ll stop here for now, know we love you all for your help, concern and caring. Please share our story and donate if you’re able. Follow #helpthehero on social media, and all that other stuff. I’m going to do my best to get a few hours of sleep before tomorrow starts, and wish us luck that I’m able to keep Bella out of the ER tonight. Thoughts and prayers.