Sorry it’s been a while, the last week has been rather tough, and I’m getting sick now as well. Bella was admitted, discharged, gotten worse, and on new treatment, with it all being rather unbearable. On top of that we had to take Jack to be seen since while we were at a follow up appointment he got into some chicken bones and we can’t lose him. The vet took all we were able to save up in emergencies, and cut into our monthly budget harshly, but he’s very important to us, and on many occasions Bella holds him above all of us for love lol. I’m running on lack of sleep, and caffeine for now, so let’s see where this takes me, before I have to start taking something to feel better too. So this month will be more of a struggle than usual, but we’ll figure it out.
I left off last time telling everyone about what an invisible illness is, and unfortunately people are assholes, and they make Bella feel bad too. We ran out yesterday to get a few things for the house, mostly food, and Bella used one of those electric scooter cart things in the store, because she wasn’t feeling well, got dizzy standing up and all of that. People will stare, and judge because she looks perfectly fine, but they don’t see the writhing in pain, near misses where she almost passes out if she doesn’t sit or lay immediately, or the lengths we have to go to keep her stable enough to just even ride the scooter in the store for some sense of normalcy. If they could get on with life without me for a little while, I’d be in so many fights almost daily. Sorry for the early side track before even continuing on with the story, but it really pisses me off when assholes look at her like WTF, those are for disabled people, and they don’t realize that anyone could have so much more going on than their small minds could possibly comprehend…
So back into it; We were told she was going to be sent home to die, while admitted at Cleveland clinic. They couldn’t figure out what was wrong, called in the rapid response team like 5 times. We got yelled at by the doctor and made to see psych right after the incident where she said she was going to send Bella home to die, just after saying she probably has Munchausen or whatever it’s called… We call the ombudsman, administration, and pretty much anyone else we could, and then leave.
That day I pack up the car, anything we could possibly need. Scrounged for any cash, decided not to pay bills, and hoped we could catch back up later. Even borrowed from Bella’s adoptive mom, unless that was the second trip. Made sure to map out any emergency rooms along the way, as Bella was still pretty unstable. Got everyone in the car, and started driving. Honestly it was mostly adrenaline, and pure hate that got me through driving the 14 hours. We got to Rochester, MN around 7am, and though we made it all the way there, had to take Bella to the ER right away.
The first day was kind of nice, huge improvement of ER experiences while there, compared to all the places we’ve been in NE Ohio, however it was also the nurses and doctors seeming much more like they care if you live or die. Being treated like a human was great, and they admitted her due to her being so unstable. So we stayed our first night at the Mayo clinic in the hospital. The attending doctor on day one, was very helpful, did his best to look through our huge binder of medical stuff to know about Bella, and took his time, and assured us he would try to help any way he could. Tried different meds, and was able to help get Bella scheduled to see a few doctors while we were there for the week. Friday became Saturday, doctors changed, and all the things set up by doctor #1 were pretty much changed or cancelled other than the appointments we were able to set. She got discharged, and we found a cheap hotel for the next few days, hoping we would be able to afford the next couple of days and still somehow make it home.
This is where we start making progress. We saw the Top doctors in their fields for POTS. Bella had a tilt table test that showed she couldn’t stand or walk for more than 90 seconds without it having a detrimental effect on her autonomic system. They took some genetics tests, and we saw a few specialists that wanted a lot more info, for the next time we would be able to see them. The biggest thing of this visit was the autonomic testing. It was proof that this stuff was not in her head, just like we were saying all along, and possible steps to move forward. It gave us much needed hope, we had been barely holding on too after being told “I don’t know” for so long. Research continued, and we barely made it through the week and it was time to drive back. Bella was hooked up to an IV pretty much the entire drive back, we somehow made it through, and with all the new info we attained while in MN, we had plenty to research, and searched for more ways to move forward. The rest of the month was very hard, we somehow made it through. We hit so many dead ends chasing leads, but we still push onward, trying to continue the care we had at mayo clinic, here.
We found doctors don’t like to be proven wrong, especially by a better doctor. Though the tests were done and interpreted by someone who is the top in their field, a lot of doctors out here didn’t want to hear it, because they’re right even if they’re wrong. This has been the case when it comes to a lot of specialists we’ve seen, especially if it’s an older doctor… Kind of bad when most of the breakthroughs or good ideas are coming from their students and the younger doctors, but I guess they aren’t as set in their ways yet, all bright eyed and bushy tailed.
Armed with more knowledge, but few answers we kept pushing forward. Soon after the first Mayo visit, I had to quit my job because of how much work I was missing. I was able to get a little unemployment to help out, we couldn’t find my medical records from the VA to try for my disability. Time’s were bleak, and every day was a struggle. Not that they aren’t now, but we had so much less to work with back then, even with me trying to work as much as possible. With the Emergency calls and missed days, it was surprising they let me hold my job as long as they did.
However that seems like a good place to end it for now. Every day is a struggle, some days worse than others, same with the weeks and months at times. Bella is so strong even making it to this point where most people would have given up. Her only goal is to be able to be a mom again. That alone, with a little help here and there from me, is how she has pushed through to today, and will continue to push through until this is all over with. Even if it ends up being something simple that was overlooked, or a blood infection she’s currently treating… it doesn’t matter as long as she can get some semblance of a life back. That’s what we do every day.
So remember when you see someone struggling, even if they look completely fine, there may be something underneath you can’t see. Please share with #helpthehero and if you’re able too donate, we will be much obliged.