Today was a very tough day at work. I can't really go into the details but someone who doesn't know about their terminal diagnosis and has been given weird reasons for that pain had a symptom that potentially can be serious and could mean a lot of bad things, and I had to calmly explain why an ER visit was needed, giving bland reasons when I know too well what the several really ugly possibilities are. And of course it was one of the patients you immediately want to do everything for.
I'm still very, very tired. I'm hoping that tomorrow I'll really sleep during the day since I'll know nothing is planned at all. The increased Seroquel is only sort of helping; I do sleep but it's not easy to get there no matter how tired I am, and getting up is painfully hard. Seroquel levels out rapidly so I should know for sure in the next few days what the result is. At the same time the Symbicort is sort of helping but I still had to use the dreaded rescue inhaler today, I still feel things are tight, and I still hurt. However, some of this could be from the test still since I know my throat is still irritated and my throat has resumed the rough sounds that I had just recently started to get rid of from whopping cough. Symbicort takes a few weeks on the full dose to really work so I have some waiting. There are just some effects I wish would start soon, like not feeling slightly short of breath. My rescue inhaler doesn't fix that, which it should, but it's not the ideal rescue inhaler for me (and I have a request to try something else since it makes me so restless as well as not totally clearing symptoms), but between knowing that and knowing a dose now means more trouble sleeping I choose to feel a bit uncomfortable. Once Dr. Body has my test results I'm going to make an appointment so I can ask a bunch of questions. The main thing I know is that he is trying to be more aggressive quietly. I didn't realize until tonight that he put me on the higher dose of symbicort. I know this is partly because of how sick I've been and I suspect he figured if I could get some in the higher dose would help make up for the possibility of not fully handling it. I want to know so much, but some of it I'll know more Monday. I want to know how severe this is. I want to know if now that we've had the test if there's much chance this is slow-to-resolve damage from whooping cough (in my heart I know that answer). I need to know things like what happens if I get a cold, because that's going to trigger bad things. i want to know how to exercise, and why I'm not hungry anymore. Generally I want to know that we can make my life livable with this condition. By livable I mean I want at least some control and I want to be able to be comfortable, to have energy for more than work, and to be able to sleep normally.
There's a whole other thing where I'm kind of annoyed with Dr. Brain, something that has almost never happened, but it makes me cry. I see her next week and I hope she can make me feel better. Right now my bipolar tendency to convince myself people I care about are mad at me when I have no idea why is in high gear.
I'm so grateful for these days off. I haven't rested but I've had time to do some things I really needed to do. I believe I'd explained that my company accidentally shorted me several thousand dollars. Well, knowing money is coming has let me relax about money for the first time since my checks were first shorted. So I got my haircut and FINALLY was able to find and buy a product for curly hair to control tangles. My hair is falling out in huge clumps from being sick for so long (and here I cry as I just spent 3 years regrowing much greater hair loss after lithium toxicity and months of vomiting and my thyroid failing) and the clumps tie knots around the long curls. Finally that is much, much more difficult for them with this stuff. I've looked at some gardening things, and also found the best thing, if I can make it work. I found an heirloom rose website that sells a rose with my niece's name. I'm going to give one to her mom and grandma for mother's date, but I also want to get one to grow inside to try to have a blossom (or several) to be used in our family photo shoot. I have an image of a little one holding a rose (obviously with the thorns off) and possibly some way to have all the women with an "Anne" rose. (B and Julia since you know her real name you can go to heirloomroses.com and search her name and it's a gorgeous rose). I have an email in to the company about how to do that; they won't ship them until mid-March and that would give me 6 weeks to get a bloom and I don't know if that's enough time or too much time.
I also did something I've wanted to do for about 2 years. I am going to be an official vermiform composter. That means that I have a composter coming that actually sits inside my home (basement or kitchen) and has these special worms that I buy (my come free) that eat through the things you usually compost, plus some things like corrugated cardboard, newspaper, shredded bills, etc. and produce the compost without odor or real effort. All I have to do is collect my mother's compostable stuff and add it to mine every week or so and dump some food in every few days. My aunt sent me a random "splurge on yourself" check and this was my choice. Weird, but I'm excited to start.
And I have ordered every black top I can find that I think may make me look skinnier. This is for the family photo shoot. I figured I could order a bunch and then return what I don't like. I have no idea what style will look right and feel comfortable so I'm just trying about 10 of them. I also ordered a bathing suit (in 3 sizes) for vacation. 110 days until the ocean waves....
I'm sure I've spent the time doing other things, it seemed like there were a million details here lately, but those are big ones. So many things I've just not been able to handle with time. So much more to do......