You ever want to give up? Ever been so sick and down you just want it all to end any way it’s possible?.. Begging for so long for help. Begging to get better. Begging for a miracle. Waiting for someone to actually listen and care. Waiting for a plan… Hoping it’s not all so bad, that even with treatment, you hope you body will allow you to do basic things like sit upright, turn or even just make it to the bathroom…
Bella’s body doesn’t even send the signal to pee until she’s about to burst. Sitting up in bed is sometimes too much to handle. She really cant do more than play on her phone and research most days. A good day for her is sitting in the car as we drive around a bit before it too becomes too much.
The last few weeks have been even worse than her “normal”. The hospital stays were a struggle the whole way. First hospital stay she had 3 separate doctors throughout her stay. Each one decided to stop or change her meds as soon as they came on, causing more problems. Luckily i was able to be there most of the time to help her and talk to the doctors and explain a bit more, but still having to fight for what she gets daily just to maintain and not make things worse shouldn’t have to happen.
The second hospitalization came 2 days after discharge and that was only because we tried to ignore her fever and stay out of the hospital. Turns out that the extra safety/cleanliness protocols we asked for and denied made it so Bella could catch the Flu(type A) from the hospital. Once her temp hit 103.4 and wouldn’t come down we had no choice. She thought it was sepsis, turned out to be the flu. Which also had been spread to Savayah and me, so super awesome. Bella is in constant pain, her body attacks itself, she cant really fight infection well, and she’s so weak and tired. Having the flu on top of that was miserable at best.
This whole time she has documented. Countless doctor appointments. Countless diagnosis and rework. Countless labs. Begging and pleading for help as best she can. Researching and doing the work herself from bed. Even this site alone has a page just with test results, doctors letters and proof of everything we’re going through and people are still trying to say she’s lying.
There’s a group on FB that she used to be a part of. It’s just a community page where we live, and she got along with them pretty well until she posted for help once. All the people who she had made friends with turned on her for reaching out and not being able to answer everything as they beat her down with questions and nonsense arguments of how she’s lying. I don’t know if you’ve ever had an argument where you knew 100% the other person is wrong, showing them proof, scientific evidence and physical findings, but they’re still convinced you’re wrong and refusing to listen to you? But that’s basically what was happening, and after a while because Bella thought they were her friends, she finally left the group. This was almost a year ago, maybe longer. I may have even wrote about it back when it started happening.
Well to this day at least a few of them go through to find her profile, screenshot her posts, repost them to the group and continue to make fun of, defame, and misinform. The worst part is no one defends her, and people who don’t know us at all are going on social media regurgitating what all those people have been saying. I believe I’ve been pretty open and honest about our situation. Just reading through this blog you have a chronological order of everything that has happened since the start. Including lab work, doctors notes, pictures, and even more recently audio/video links.
A friend of ours started a Gofundme for us to help pay for Bella’s medical and maybe help us save our house. Now even she’s getting emails from the same people who only seem to want to make things harder than they already are, for no reason. Threatening her because they don’t think Bella could be this sick. Honestly what do we have to gain? We’re losing everything to this and these people are horrible. It’s one of the reasons I’ve lost most my faith in humanity, the friend who is trying to help is like the glimmer of hope, but i think she understands because she’s chronically ill as well.
That seems to be the divide. We’ve been told many times how much Bella’s story sounds like theirs. How they’re glad we’re putting all this out there because maybe people will understand. I get more hate mail than I get suggestions or sympathy. I grit and bare it because if i wasn’t a part of her life and seeing every day with my own eyes, i wouldn’t believe it either. Unlike some people i wouldn’t add to it to make it worse, but honestly the way we were before all of this i wouldn’t think this level of sick would be possible. Full transparency.
I don’t understand how people can be so cruel. How they can see someone so sick and in pain and just without any provocation tell her she’s a piece of shit, tell her that she’s lying, threaten her or our family… It’s almost a daily occurrence at this point that she’s had to deactivate her accounts a few times just to get a break from the extra torment.
I wanted to write this post as an update to say we’re getting her through it at home the best we can. It’s not going well but we’re still fighting. However i don’t know how to do that when all that’s on my mind is how many people are so mean to people with chronic illness. So instead of everything else going on, i apologize on behalf of all the assholes out there who don’t understand and only make life worse for you. If you’re chronically ill in any way, not just with Lyme or Babesia or anything Bella has, im sorry people are assholes. Im sorry they don’t understand. Im sorry you feel alone in any of this, i wish i could open their eyes and make them see. We stand with you, and support you. You deserve so much more than the world has to offer you and i know its not fair.
Lastly, for anyone who wants to feel personally attacked by anything i have to say, you’re likely the problem and should listen to what your mom used to tell you. If you have nothing good to say, don’t say anything at all. Life will be much happier for everyone involved, and you know what im sorry to you too. Im sorry for whatever has hurt you in life that makes you think its ok to put down someone already so far down. Im sorry for whatever hurt you to make you that way, but you need to get over it. Find happiness and please just leave Bella alone. Leave all those out there who are chronically ill alone. Their lives are hard enough to have to deal with your emotional baggage.
Sorry for the rant but im done for now, ill make better updates soon, more pertaining to our lives, but i felt this post had to be done. Thank you for reading and know i love you all. If you’re going to only show hate, go for it, ill even start posting them on the blog and replying. Contact us is a direct email to me and ill be happy to answer your questions. Read through if you can little by little and maybe you can see a sliver of how we live. Other than that Ill talk to you all next time. Thanks again, i hope you have wonderful nights.
PS i was going to put up screenshots of the people who were straight up just mean to Bella but decided not too. They can be petty and assholes, i have more than enough to do, they can figure their own shit out. Night everyone. Also again if anyone has questions or would like clarification on anything, feel free to email or comment. Thanks for reading.