Well two days ago we had our appointment with the headache clinic. Bella was told she has chronic migraines, which we knew, and what was described as cluster headaches to us previously, are also just really bad migraines because they last too long. He wouldn’t really touch on anything else because it’s not his specialty and he let it be know anytime we strayed off subject, though he stopped when he realized we were also saying how the other symptoms relate to the headaches and kind of just disregarded anything he didn’t find relevant. Though it sounds like he was kind of a dick, he was actually a really good doctor and it was a pretty good visit. He did refer Bella to someone who specializes in mitochondrial disorders, based on the other symptoms he’s heard, so we’ll see about that too soon enough.
Walking out, Bella got an email from one of the Labs where we sent out testing. Got a positive result for Large infection of MARCoNS in her nose. Multiple Antibiotic Resistant Coagulase Negative Staphylococci. As far as I can tell it’s like MRSA but worse and hidden in your sinus cavities. Depending on the type and resistances, it won’t go away, and we may have trouble treating it because it’s one of those controversial things, even though it does happen more than anyone would like to admit. “It’s rare” is something we constantly run into and takes us a while to actually get tested or treated… Some doctors say it’s ok to have staph in your nose, which i don’t really understand, but im not a doctor and usually when someone has staph or mrsa it needs treated right away before you lose whatever its infecting… Idk, we’ll figure that out, and treating it could greatly improve Bella’s health and overall condition.
So after getting the news, we sent the results to all of her doctors, and hopefully one of them can help. Functional med actually suggested us get the test, and it’s also the only doctor who doesn’t seem to reply to any messages or calls we put in. Hopefully someone will help with the protocol to rid her of the marcons and rehabilitate the damage done.
Other than that we had to goto the ER this morning due to severe chest pains and body aches, that we just couldn’t lessen or get rid of. They couldn’t find anything, but we had a good doctor who may have pointed out something new, that’s not really a big deal as of right now, but could explain why the lymph nodes around bellas breasts get swollen and tender… Nothing else found in blood or heart rhythm, so they sent us home, shes resting now.
Also huge shout out to my boy Jack. He turned 10 today and is amazing and we love him. He’s a great puppo and amazing service animal for Bella, and we’re going to give him too many treats and a homemade doggy cake today :). Also thank you to the annonomous person who sent jack some food and a toy today he loved it.
So as im trying to wind down the day and get everyone ready for tomorrow, Bella is resting and taking her meds and trying to force herself to eat through the pain to not make things worse. Pray for us.
Please share if you’re able, and any donations would be much appreciated. Until we can figure out insurance, and get them to pay for her meds we have to pay out of pocket :(.
Love you guys, share with #helpthehero and ill update soon, im sure i left a bunch out, but im in the middle of chasing and getting savayah to burn out her energy so she sleeps tonight, and thus allows me to do the same at some point, I hope lol.