Sorry, I ended up needing a bit of a break from social media and the like. With all the stress and Bella being more and more sick despite treatment… I just needed a bit of a mental break if you will.
The headaches have been back with a vengeance for Bella. They’re totally debilitating and nothing helps bring them down to a more bearable level. Sometimes it lessens slightly and shes able to get some food in, or maybe come down stairs, but it’s been bed rest other than that. Movement makes it worse, and when it gets real bad noise and light exacerbate it all. However on a lighter note her body and mind seem more clear. We’re just not sure if the headaches are hiding the other pains or if the meds are helping and all this pain and suffering is just the die off of the Lyme, and it’ll get better soon as time goes on. Either way we’re continuing treatment, starting the 2nd antibiotic at home this week, and I wish that was all.
These headaches lead to times where she loses her vision, her speech starts being effected, and it’s starting to occur even when she’s not that bad. If that makes sense? Though the headache hasn’t fully dissipated in weeks, there have been a few times where it’s bearable, at least to her. Even though she’s always in pain, her tolerance has always been high, so I can only imagine bearable for her is ER for most other people. It’s hurting her ability to communicate and get out words or gets stuck on words… It’s heartbreaking to watch…
We see the headache clinic tomorrow to see if they can offer any help at all. If they’re somehow neurological or physical, they can help but if it’s from the Lyme, we just have to wait it out unfortunately, unless the Lyme doctor can offer any insights. We’ll see, it’s neurology and early in the morning, so hopefully I can get her well enough to make it, but it’s going to be a struggle. Wednesday we have the Lyme doctor. We still need to raise a bit more money to be able to afford the appointment and she desperately needs him since he can not only monitor her antibiotic use better, but he can also help tailor a treatment plan to include other effective ways to help manage everything, where our normal doctors have no clue because they aren’t educated past the initial infection.
It’s been fun to say the least… I don’t think I’ve slept more than an hour or two the past few nights. It’s hard for Bella to sleep because of the pain. She can’t help but need help because of it, and though I try my best to rest when I can, things still need done during the day. When she does sleep it’s very light. Any random noise wakes her with a startle and skyrockets her heart rate, building the chest pain and flushing her adrenals. It’s a horrible feeling if you’ve ever felt it, let alone multiple times a day.
She was on a steroid to help with the headache but it only helped for a day then became ineffective. Afraid to stress dose because it can combat the work of the antibiotics, and throwing more steroids on that may not even help is just bad for her all ready ravaged body. Unfortunately we’re at the wait and see portion of everything. She feels bad enough to be in the hospital, but we do everything possible to stay away because they are never able to help and it’s not worth the risk of catching something else while there, until it is.
One day I’ll start proofreading and going through these to make sure I got everything out in a clear manner, but I’m surprised I was even able to get this part out without falling asleep. Anyways, sorry for my poor writing skills, I’m exhausted. Please if you can find it in your heart share our story far and wide. If you’re able too, I’ll love you forever, please donate to help us make it thorugh and possible to see the doctors Bella needs to see, and pay for the tests that insurance doesn’t cover but her doctors need to continue care… it’s been hell. Thank you for reading, and follow on social media with #helpthehero. Goodnight everyone, I hope you have wonderful rest and make tomorrow beg you for mercy.