Health and Wealth and GrownUp Stuff


  • Tutorialist

    @JinShei said in Health and Wealth and GrownUp Stuff:

    @Macha never done it before! He pretty much said yes, this is this, keep warm, take drugs, keep moving.

    I'm old

    alt text



  • Depression: Your work performance review has been scheduled for this afternoon. STRESS! Turn into a ball of nerves and fail to sleep properly as you have vague unformed nightmares about losing your job and failing.

    Reality: Boss pushes back meeting by ten minutes due to feeling it hardly neccessary, tells me how happy he is with how everything is going, asks what he can do to support if I need it, claims he had no real ideas what to put in the mandatory to fill in improvement section. So is there any external training that he can pay for me to go on? Also keep up the good work and enjoy the fifteen thousand dollar bonus.

    Depression: Still leaves me feeling meh and anxious and terrified of job security? Dammit.



  • So, today it was confirmed. The baby (Isla) has 2 bad genes, so cystic fibrosis. They told my daughter and her husband, at their very first newborn 'well-baby' appointment that their child wouldn't live past 40 so that was fun.

    The flip side is their hospital is part of the Children's Miracle Network and has an actual CF center as part of it, and she's already got three pediatricians, a dietician, a pulmonologist, a respiratory therapist and a social worker so at least everything will be being done the best it can be done for her from the beginning.

    Still. Fuck.



  • @eye8urcake said in Health and Wealth and GrownUp Stuff:

    So, today it was confirmed. The baby (Isla) has 2 bad genes, so cystic fibrosis. They told my daughter and her husband, at their very first newborn 'well-baby' appointment that their child wouldn't live past 40 so that was fun.

    The flip side is their hospital is part of the Children's Miracle Network and has an actual CF center as part of it, and she's already got three pediatricians, a dietician, a pulmonologist, a respiratory therapist and a social worker so at least everything will be being done the best it can be done for her from the beginning.

    Still. Fuck.

    I'm sorry to hear this. :( BUT. I'm glad to hear they have a good hospital there. That's super awesome.



  • @eye8urcake said in Health and Wealth and GrownUp Stuff:

    So, today it was confirmed. The baby (Isla) has 2 bad genes, so cystic fibrosis. They told my daughter and her husband, at their very first newborn 'well-baby' appointment that their child wouldn't live past 40 so that was fun.

    The flip side is their hospital is part of the Children's Miracle Network and has an actual CF center as part of it, and she's already got three pediatricians, a dietician, a pulmonologist, a respiratory therapist and a social worker so at least everything will be being done the best it can be done for her from the beginning.

    Still. Fuck.

    I am sorry to hear about this. I am glad that they have the resources they need. This way they can focus on quality of life with their child. My prayers are with them.



  • I am terrible about working out.

    I mean, who isn't?

    I hate it. I'm lazy. It's worsened by the fact that I'm limited in what I can do by my health and my ADHD (seriously, tell someone with ADHD to do something that they find insanely boring and won't see any benefit from soon if ever). I'd swim if I could because I love swimming except I can't afford a membership to a pool I can swim laps.

    So, recently, Just Dance 2020 was on sale. I picked it up for my Switch.

    It's fun.

    Yes, I will even play the Baby Shark song. What do I care. I live alone. Who's gonna make fun of my fat ass? My cats?

    And if I do the world tournament mode, who is gonna see me? NO ONE. In fact, I can look at the fact that I place 110th out of over 300 people in that round and think 'I bet some 200 of you are kids in better shape than me. SUCKAS.'

    But I love music, so I'm inspired to do it and each song that come sup I'm like 'pff, it's just like, 3 minutes. Easy.' next thing I know it's been half an hour and I've worked up a sweat.


  • Tutorialist

    @eye8urcake said in Health and Wealth and GrownUp Stuff:

    The baby (Isla) has 2 bad genes, so cystic fibrosis. They told my daughter and her husband, at their very first newborn 'well-baby' appointment that their child wouldn't live past 40 so that was fun.

    It seems incredibly weird that they would say this. As someone who has been in a long-term relationship with a CFer that still has basically full lung function and almost no organ issues, along with his various family members that have it, and the people in the CF wing that have it in the rare event he gets a sniffle and they want to pump him full of kidney-killing drugs for two weeks -- this seems inaccurate. Especially if it's Delta F508, which it's statistically likely to be, since they have some kickass new drugs for that.

    That seems like a doom and gloom prognostication since I know plenty of CFers over 40 and doing decent. :-/



  • @Derp said in Health and Wealth and GrownUp Stuff:

    @eye8urcake said in Health and Wealth and GrownUp Stuff:

    The baby (Isla) has 2 bad genes, so cystic fibrosis. They told my daughter and her husband, at their very first newborn 'well-baby' appointment that their child wouldn't live past 40 so that was fun.

    It seems incredibly weird that they would say this. As someone who has been in a long-term relationship with a CFer that still has basically full lung function and almost no organ issues, along with his various family members that have it, and the people in the CF wing that have it in the rare event he gets a sniffle and they want to pump him full of kidney-killing drugs for two weeks -- this seems inaccurate. Especially if it's Delta F508, which it's statistically likely to be, since they have some kickass new drugs for that.

    That seems like a doom and gloom prognostication since I know plenty of CFers over 40 and doing decent. :-/

    Right? Also, it wasn't until today, four days later, when they went in to do the sweat test that they even explained to them that the main aggravating factor for inducing the damage is getting sick, and gave them all this information, literature, people to call, etc. to help lay the groundwork for her not getting sick, for her eating right before her pancreas has problems, and other things.

    I'm going to blame it on that first appointment being the old doctor, and this appointment being in the CF center of the hospital with the people who, like... actually know their shit. I just got off the phone with her and they sound SO MUCH LESS DOOMED, it's unreal.

    It also helps that my daughter, who has a condition called D-MER, has really been struggling with breastfeeding and has felt really attacked by the old doctor and nurses regarding her issues with it, but today's appointment had Isla at proper weight maintenance with eating 2.5 times as much as they expected. They really gave her a pat on the back for the effort, and now the baby's on enzymes and vitamins that are supposed to help with that even more.

    As with everything, some good, some bad but I'm going to go ahead and share your post with her so she can see what you've said about how life might be for her. Thank you, @Derp.


  • Pitcrew

    Really fed up with this cough, and with the constant return of depression. I get that it is a life long thing (the depression not the cough) and that it is by nature a cycle but... fuck off already.

    I don't have TIME for this shit this week (which is why it is here, of course). So busy beating myself up over mistakes recently, and getting an oncoming tsunami of work that it will be impossible to do well...

    over it


  • Pitcrew

    While I'm glad it's essentially confined to my scalp, having seborrheic dermatitis is just... old, at this point. Huge swaths of skin breaking away and peeling off. Great for my OCD, terrible for my appearance.

    Also, it itches.


  • Pitcrew

    Pain pain fucking pain. In my feet, my right ankle is throbbing like a whole fucking pack of drummers is in there, my lower back (which is more usual) and my left fucking shoulder. Like WTF body - you haven't been this big of a dick in a week.



  • The past handful of days have required far, far too much medication and meditation and deep-breath-calm-blue-ocean for my liking to keep the flashbacks and panic attacks under control.

    It's easier when it's a case of 'this, too, shall pass'. Most things do. I've given it quite some time, but it isn't passing; it is getting worse instead.

    I can't keep this up forever, and odds are good I can't keep it up much longer. There's not really an option B, though. (Well, there is, but thankfully my brain hasn't been going there anywhere near as often as it was for a few years, and that is not an easy fight, either. That option really isn't acceptable and I have gotten better about reminding myself of that. It's still going there a lot, but not more than once or twice a day, and briefly when it does, which is a huge improvement.)

    This blows.



  • @surreality said in Health and Wealth and GrownUp Stuff:

    The past handful of days have required far, far too much medication and meditation and deep-breath-calm-blue-ocean for my liking to keep the flashbacks and panic attacks under control.
    It's easier when it's a case of 'this, too, shall pass'. Most things do. I've given it quite some time, but it isn't passing; it is getting worse instead.
    I can't keep this up forever, and odds are good I can't keep it up much longer. There's not really an option B, though. (Well, there is, but thankfully my brain hasn't been going there anywhere near as often as it was for a few years, and that is not an easy fight, either. That option really isn't acceptable and I have gotten better about reminding myself of that. It's still going there a lot, but not more than once or twice a day, and briefly when it does, which is a huge improvement.)
    This blows.

    You should talk to your doctor about this as soon as possible. There are always (good) options. <3



  • @Lemon-Fox I have an appointment on the 5th, so it's already in the works. Holding out until then I can do. It isn't fun, but I can do it.

    There are certain things I just don't like to see, let alone be subject to, and they're pretty inescapable in life at the moment.


  • Pitcrew

    I'm trying to explain pain tired vs tired tired to someone. It is not going well.


  • Pitcrew

    @Macha

    That conversation will never go well and lead to disgust tired.



  • Good things:

    • FINALLY finished this antibiotic. (That was a looooooootta horse pills.)

    • OMFG we found one that actually works, and I can tell people this, so they will stop prescribing Bactrim (which totally doesn't work, hasn't for over 15 years, and just makes my skin tear right off with any bandages/tape, making any infection significantly worse instead of better). This is a super huge deal, since I had a minor bad childhood reaction to penicillin that got it labeled 'is allergic to'. This is a far-flung branch of the same family and has no adverse reactions at all, so they feel confident they can use it, and similarly far-flung things, moving closer if needs be to check over time. (Also, they seem to grok that things like 'life-threatening organ failure is too important to worry about a minor 12 hour leg rash'. It may have taken them decades and that extreme situation a few years back to come to that conclusion, but this is me not complaining now that they finally have.)


  • Pitcrew

    @silverfox This person just didn't know. It actually went well when I explained pain tired isn't fixed by a nap.

    They asked me then if there is anything they could do to help.



  • The other day I did an hour of Just Dance. It was great. I felt great after.
    The following day I could only manage 20 minutes.
    The next day I couldn't make myself do it at all and just felt exhausted. Sluggish. Full fibro flare had come up..
    Yesterday I slept until 2pm.
    Today walking to/from the bus is torture.

    I hate this. I hate how even finding a method of working out I like.....and my body is rejecting it. I hate how I WANT to get in shape.... I mean an hour may have been the issue and once I recover I should prob do less but I was having fun! I should be able to have fun and enjoy myself and not pay for it for days on end.


  • Admin

    Organized, competitive basketball on Sunday nights is amazing. It's fun and exhausting in equal measure.

    What's not fun is that the games are late (they start at 7 pm) and then I just can't sleep. I'm not sure if it's the adrenaline rush or the caffeine consumption before - I'll adjust the latter, at least - but two weeks in a row I couldn't get to sleep until past 1 am, which just straight up murders my Monday morning.


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