Food Is Yum

I can eat. Thankfully. Things are still touchy but I can eat. That was a long...whatever it was. 

I did try to call the hep but they're out for the rest of the year and so is their secretary.

Man. Will anyone be there when I need them? It appears not.

I was supposed to have a follow up appointment soon, but I couldn't get it scheduled because the calendar wasn't open, then the secretary wasn't there, then they told me call scheduling because I just got back from vacation and I'm busy EXCEPT scheduling can't do anything because the hep is 'retiring but not retiring' so there's like some kind of presidential pardon and MI6 double agent thing that has to happen to make an appointment, and then it was we're not scheduling until later so call back, and and and. 

Meanwhile my gut is brewing fuckery. Sigh.

On the teen...Started leaving messages for the physiatrist and we had a follow up visit with Infectious Diseases and are looping back around again to cerebral palsy for the kiddo. Ha. Just when we think a diagnosis is coalescing we get a plot twist. We have a genetics referral as well because why not at this point. Various specialists have brought it up so it seems dumb to not at least talk to Genetics. And ID wants to do some outpatient IVs. 

I keep trying to figure out an end game. When can we stop? How long can we go with nothing tests for all these symptoms? What's the cutoff where we can say we tried, but the science isn't there so let's just live our lives? Will anyone ever do an MRI if cerebral palsy isn't going to go away? The teen is tired of it. I'm tired of it. But we do still have some things that we haven't tested so we need to keep going. Maybe it's worth it? It feels like it'll just be another dead end though.

Like, yes, the fever has dropped. She's been at 99.7 for months instead of 100.4 and 100.6. So that's good. Her joints finally feel better. But yet we still have all these issues causing major problems. How do we get any stability? We can't seem to stabilize. PT is useful but it's not even close to being enough. Medications are useful but we have a lot of breakthrough. It's very frustrating.

On the narc front...the narcs are rampaging and have thrown everything into chaos. So lots of family drama times multiple narcs. 

I'm tired. People suck. Science is slow. But at least I can eat and the teen feels less terrible at the moment.