Starting back some time mid-February I got sick. This wasn’t my usual chronic illness, this was acute. It went from flu-like to worse quickly. I put myself in steroids to breathe but handled it all wrong. Afraid they would put me in the hospital and the house would go to Hell in a handbasket, bills wouldn’t get paid, the emergency room was always an option was my rationale.
Dumb. I never claimed to be a genius, just creative. I went a week on occasion or two or three just getting e-mail once or so. Then the dinosaur laptop croaked (fan wasn’t fanny anymore, not an actual death).
Still coughing up small squid weeks and weeks later (I’m a treat, aren’t I?) my lungs are less tired, less worn out. I see Dr. W. this week so he can give me his level gaze and tell me how full of shit I am. It doesn’t matter that the concerns were real, there were ways around them.
We were to begin working on my lungs, ironically enough. Supercool doctor for TSC left Philly and moved two states away. He is now highly unlikely as a candidate. The steps will now be:
- Find a new TSC doctor? Is one in a viable area? (I don’t drive. Epilepsy) Will insurance allow it now? These hoops alone give me agita.
- Afinitor (with or without a TSC doc??) Afinitor is the hope that might bring shrinking or at least a stand-still in kidney tumor growth, seizure activity, even possibly lung angiomyolipomas if any are present and missed (very common. LAM is sneaky on film and the keyword here is “possibly”).
- Proving to Dr. W. I’m, indeed, back to dedicated with my illness. Some of the things I like about Dr. W. is he doesn’t treat you like an idiot and don’t you dare do that to him. He’s a scientist first, is intrigued by my case and always supportive of me. When I went AWOL for months and came back he let me know this was not how it was going to be. So, yes, it’s ok to get tired but when you finally get a team leader who will work with you, do not be a jackass.
- Admitting I can not quit cigarettes on my own. I need help, major help.
I only have my extremely old phone (which will not allow any apps to be added because Google bloatware can’t be rooted off and it’s out of space, that’s how old it is) and my older tablet. I’m leery of the WP app because of the fiascos in posting the last time I had it but maybe it’s better now. E. has been kind enough to let me on to her pc while she is sleeping.
This gets old really fast.
Sick and tired of these motherfucking squid in my motherfucking lungs.
I have things I need to get done and they are getting in the way.