Sorry I haven’t been able to write in a couple of days. It’s been tiresome, I’ve had a lack of sleep, started the fall semester at Tri-C, and Bella hasn’t been too well. However I feel I should make a little time and let you in on a few more aspects of our life.
So I got sidetracked and wasn’t able to go past about when I got back home from deployment, and started our new life finding a cure. I explained a little about POTS and her initial “diagnosis”. So we researched. Well Bella researched mostly. She was on complete bed rest back then. She couldn’t get up without almost dying. I made her meals to eat in bed, helped her potty, and even sometimes had to bathe her in bed. It’s no way to live, and heartbreaking every day. She was on a treatment plan. After a long stay and uncontrollable heart rate, a doctor at CC decided to try a med plan, which was pretty much the standard for POTS back then. They brought in the crash team, just in case, and had the antidote on standby, because she wasn’t responding to lower doses at first. They were trying out a Beta-Blocker to help control her heart rate, that was uncontrollable and in the high 170s-190s laying down, unable to move. The dosage was so high they had to bring in all those people just in case, because they didn’t know what else to do, and if the dosage was too high it could potentially stop her heart completely. She seemed to start to respond, and that was good enough for them, so the doctor prescribed Bella a huge dosage of the Beta-Blocker and a little steroid. She was able to come home, and wasn’t too stable, but it’s what we had for the time being.
About year and a half down the line, we finally get it changed. Bella wasn’t responding to the Beta-Blocker most of the time it was prescribed. We continued research, and everything as much as we could, tried different treatments, but nothing was working. Bella noticed mostly that while on everything she was, she didn’t feel right. We had to fight hard to get the med change because the doctor who prescribed it, went to doctors without borders, and no one else wanted to make a change in another doctors case. We ended up getting a different beta-blocker that seemed to work a little better. However Bella got very emotional after the switch, not as a side effect but because it was the first time in almost 2 years she was able to really see how beautiful Savayah was, to truly hear her. She had lost her ability to use her short term memory effectively. She often still tells the same story and repeats instructions in the same telling. She could hear the world around her that had been muted for so long. It was amazing to finally feel normal again when it came to her senses that were dulled by the overdose of the beta blockers, and now that she was off them, and on a new one everything was so much more amazing.
These are a medication that you can’t just stop. You have to come off extremely slow as they will cause what’s called backlash tachycardia. Meaning your body will over compensate and beat super fast and this can cause heart attacks or cardiac arrest. Luckily the switch from one to the other was instant, and the dose was much less. All in all it seemed to help a bit, though Bella was still not too stable. It was around then she started having a “good” day or two a month. Her good was being able to leave the house for something other than a doctors appointment or ER visit. They were usually heartbreaking. The first few times we got super excited, and each time they were met with hope, however the next day was horrible, sometimes the next whole week was complete bed rest in a dark room laying still as possible. We started being more cautious. However every time we had hope it was the time she’d just be better.
Thing is about invisible disease is that most people don’t understand. This isn’t something that people can visualize unless they’re here 24/7. We keep on a smile and try to be as positive as possible. We do this because we won’t let whatever this is win. This illness has taken everything from us, but we won’t ever let it take away our hope or love. Invisible diseases aren’t outward. People see her in a wheelchair, and they think she’s just being an asshole, where if she stands up she’ll have to go to the ER because her heart feels like it’s going to explode. Where she smiles or has a good day, and people think she’s better just like that, and think she’s faking it or something awful, and they don’t see her in so much pain every day. Struggling to do anything we take for granted not even thinking. Having to rely so heavily on someone else that she feels so horrible inside. It takes a toll, having to explain why she looks so good, but feels so horrible.
We’ve been at this for 5 years now. We’re still researching, trying to get Bella better. We’ve been all over the country to the best hospitals. We’ve tried so many plans, tests, and changes.
This is something that’s still 24/7. She’s out and about a little more, we’re still cautious. However, there’s a few more good days, and few horrid days. Most are in the middle where there’s a lot of pain and we’re able to keep her home or go on a car ride at the very least. What most people see are the good things that happen in our life, but even on those good days, we only have a short window before she needs to rest again to hopefully recover.
The CC hospital wasn’t yielding results. We did our homework, and decided to try the MC hospital. We didn’t make much at the time, and unfortunately the new hospital was about a 14 hour drive we weren’t sure if we’d be able to make. A few hospitalizations later, they were trying to Medi-flight her there. They couldn’t accept her without a diagnosis, but the CC didn’t have one to give them. No one knew what to do, how to help, and we were given the suggestion of getting an RV and driving there with her resting the whole way. With almost no money already, and me only able to work a few hours here and there, it seemed impossible. We tried borrowing, getting loans, and saving what little we could, knowing how expensive it would be, on top of the insurance since it was out of state, and network. We finally got the funds together to go and Bella was hospitalized again. Unable to move, laying flat in a dark room, her heart rate in the high 180s and up to 220 bpm, she was admitted, unable to be stabilized. This was a long hospital stay, almost 2 weeks.
I’ll tell you about the stay next time, and how it affected us for the next few years. I’ll touch back a bit to the in between I left out, and again I’ll apologize for not knowing how to tell the story from start to finish.
This post, I wanted people to know and feel a little bit more about what we still go through every day. Even as I’m writing this, Bella is laying here, with sharp chest pains, trying not to get too far to need a hospital or make things worse. Hoping to feel better even a little bit for tomorrow. This isn’t the part we show too much on the outside, because we’re in heavy try to get Bella more stable and ok mode. However it happens every day. For the past 5 years, we’ve held together to get as far as we have. We’re not out of the woods in any way just yet, however we’re as hopeful as ever, still researching, and we’re going to keep going until we figure it out for the last time.
Thank you for reading, and I hope some light has been shed. I’ll continue on soon, and as always I ask you to share. #helpthehero on social media, and if you’re able too, please donate, as we’re still pretty tight financially, and need to make another cross country trip soon.