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Oct. 30th, 2025 08:47 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
serafaeryI keep posting publicly and then locking it. Not willing to share so openly about this current health scare, but need to get it out at least for a short while here and there.
Saw the new PCP today and I am not a fan, but beggars can't be choosers I guess, it's just not a good personality fit. I get that people avoid vaccines for dumb reasons, but getting such bad vertigo that I couldn't do aerial for a month is not a dumb reason to avoid further covid vaccines, and I did FOUR of them before that happened, so it's not like I'm an anti-vaxxer - I *required* people to be vaccinated to get hair sparkles. But she's acting like I'm uneducated for refusing. I always had bad reactions to flu vaccines and have always avoided them, but I got my TDAP and my TB and several others that she should be able to see on my chart. Dismissing me as brainwashed by chatgpt is not fair, I don't even use chatgpt or AI at all, I don't trust it one bit. It hallucinates, I've seen it make really bad mistakes and it's getting worse, not better.
So that's annoying.
She's also overly fakey-nice and hyper-apologetic. Like, please just be real. Like has kicked the shit out of me and I'm still standing, don't treat me like a wounded animal. I'm tougher than I look. I think all my trauma in my chart and all the family deaths and cancer have her a bit scared of me. I guess rightly so. I do feel like a walking corpse, often. Most people can't relate to my experience unless they're in their 60s and beyond.
Anyway. This is my only option. I guess I know now why she had availability. Sigh.
When I told her how I bristled at the term "pre-cancer," she explained why that's a normal term people use for my condition. Because it "could" evolve into cancer. Great, thanks for making it worse, I guess? Can't that happen anyway? Just call life "pre-death" then while you're at it? Can we focus on the fact that I don't have cancer because that's what I'd like to do.
It's okay, I know she's doing her best, she's just doing the best she can with the information she has. Maybe if she gets to know me she'll realize I'm actually not AI-addicted or a tiktoker.
I did lecture at Harvard once. I am smarter than I look, in this little skeleton hoodie.
Maybe that was a wrong choice for a hospital, oops.
I think it just started raining.
I need to jump in the shower and get ready for the club, I guess. I want to go but I'm kind of dreading the post-show vibe. I will go late and stay late and I do want to see Duncan. It's a costume night but I will just zip on my skeleton onesie. I wish I were in better shape, it looks better on me when I'm skinny. But. I'm not willing to go on a GLP1 shot like all of my skinny friends just yet.
Maybe swimming will help with that, once I move.
I worry about everyone with the benefits getting cut in a couple days. I know people on food assistance. I was on it for several years.
I do wish I could give back more, volunteer, provide real hands on support to people. But I still feel like I can barely keep myself afloat, and expending energy to help others when I'm barely hanging on by a thread does not feel like the responsible choice, at this time in my life. I'm focusing my helping efforts on Josh and Avalanche. Josh is eternally grateful. I think my support genuinely helps his life go more smoothly, and helps him perform better at work, and I'm grateful for that.
I feel like ass.
Maybe a shower will fix it.
I don't have to wear a costume. We'll see how I feel once I'm cleaned up a bit.
They tried to draw my blood at my appointment this morning, which was not in the plan, so I didn't prepare, which I need to. I tried to explain this, and I explained that I am very difficult to get blood from. My doctor insisted that her assistant is "the one I call" for tough cases. But, of course, instead of getting my vein, she stabbed my muscle and proceeded to dig around trying to find purchase. I did not give her a second try and I refused the pneumonia vaccine that this doctor insisted I get, the day before Halloween, which is as sacred to me as Christmas is to most Americans. Not a fair suggestion to spring on me like that. "But I see sick people in the hospital" yeah I'm sure you do and I'm sure it sucks but I'm not ruining my most important holiday to make you feel better about how you're able to control your patients' decisions.
Sorry feeling bristly.
Upset about all of it. I feel dismissed and like a statistic to these people a lot of the time.
I have been unbelievably stressed. My regular self-care routine is falling apart. I burst into tears today with a customer at work whose mom died from alcoholism, I don't know how we got on that topic but I had to drop into silence to hide my tears from her, I did not want her to realize I was crying while sparkling her. Her poor mom. (Alcohol also killed my mother, slowly and insidiously in an indirect way.)
Maybe dancing will help.
Saw the new PCP today and I am not a fan, but beggars can't be choosers I guess, it's just not a good personality fit. I get that people avoid vaccines for dumb reasons, but getting such bad vertigo that I couldn't do aerial for a month is not a dumb reason to avoid further covid vaccines, and I did FOUR of them before that happened, so it's not like I'm an anti-vaxxer - I *required* people to be vaccinated to get hair sparkles. But she's acting like I'm uneducated for refusing. I always had bad reactions to flu vaccines and have always avoided them, but I got my TDAP and my TB and several others that she should be able to see on my chart. Dismissing me as brainwashed by chatgpt is not fair, I don't even use chatgpt or AI at all, I don't trust it one bit. It hallucinates, I've seen it make really bad mistakes and it's getting worse, not better.
So that's annoying.
She's also overly fakey-nice and hyper-apologetic. Like, please just be real. Like has kicked the shit out of me and I'm still standing, don't treat me like a wounded animal. I'm tougher than I look. I think all my trauma in my chart and all the family deaths and cancer have her a bit scared of me. I guess rightly so. I do feel like a walking corpse, often. Most people can't relate to my experience unless they're in their 60s and beyond.
Anyway. This is my only option. I guess I know now why she had availability. Sigh.
When I told her how I bristled at the term "pre-cancer," she explained why that's a normal term people use for my condition. Because it "could" evolve into cancer. Great, thanks for making it worse, I guess? Can't that happen anyway? Just call life "pre-death" then while you're at it? Can we focus on the fact that I don't have cancer because that's what I'd like to do.
It's okay, I know she's doing her best, she's just doing the best she can with the information she has. Maybe if she gets to know me she'll realize I'm actually not AI-addicted or a tiktoker.
I did lecture at Harvard once. I am smarter than I look, in this little skeleton hoodie.
Maybe that was a wrong choice for a hospital, oops.
I think it just started raining.
I need to jump in the shower and get ready for the club, I guess. I want to go but I'm kind of dreading the post-show vibe. I will go late and stay late and I do want to see Duncan. It's a costume night but I will just zip on my skeleton onesie. I wish I were in better shape, it looks better on me when I'm skinny. But. I'm not willing to go on a GLP1 shot like all of my skinny friends just yet.
Maybe swimming will help with that, once I move.
I worry about everyone with the benefits getting cut in a couple days. I know people on food assistance. I was on it for several years.
I do wish I could give back more, volunteer, provide real hands on support to people. But I still feel like I can barely keep myself afloat, and expending energy to help others when I'm barely hanging on by a thread does not feel like the responsible choice, at this time in my life. I'm focusing my helping efforts on Josh and Avalanche. Josh is eternally grateful. I think my support genuinely helps his life go more smoothly, and helps him perform better at work, and I'm grateful for that.
I feel like ass.
Maybe a shower will fix it.
I don't have to wear a costume. We'll see how I feel once I'm cleaned up a bit.
They tried to draw my blood at my appointment this morning, which was not in the plan, so I didn't prepare, which I need to. I tried to explain this, and I explained that I am very difficult to get blood from. My doctor insisted that her assistant is "the one I call" for tough cases. But, of course, instead of getting my vein, she stabbed my muscle and proceeded to dig around trying to find purchase. I did not give her a second try and I refused the pneumonia vaccine that this doctor insisted I get, the day before Halloween, which is as sacred to me as Christmas is to most Americans. Not a fair suggestion to spring on me like that. "But I see sick people in the hospital" yeah I'm sure you do and I'm sure it sucks but I'm not ruining my most important holiday to make you feel better about how you're able to control your patients' decisions.
Sorry feeling bristly.
Upset about all of it. I feel dismissed and like a statistic to these people a lot of the time.
I have been unbelievably stressed. My regular self-care routine is falling apart. I burst into tears today with a customer at work whose mom died from alcoholism, I don't know how we got on that topic but I had to drop into silence to hide my tears from her, I did not want her to realize I was crying while sparkling her. Her poor mom. (Alcohol also killed my mother, slowly and insidiously in an indirect way.)
Maybe dancing will help.
no subject
Date: 2025-11-01 02:21 pm (UTC)He's a fan of the research of the mRNA work, but he told me he had some concerns about this vaccine technology, especially about the links to miscarriage and other hormonally-related issues in women. He had other concerns which I don't remember the particulars of now.
I felt hesitant about those vaccines anyway, even before my conversation with my dad, which was both reassuring and not. My system is really sensitive and if there are side effects to be had, it's likely I'll have them. I had this intuition that these vaccines weren't going to work for me. But I also didn't want to die on an ECMO or give it to friends and family.
Sure enough, even though I've never had a reaction to any other vaccine, I had an allergic reaction to Pfizer shot #2, breaking out in massive hives all over my body and about one-third of my hair fell out. I haven't had a Covid vaccine since and whenever possible, I'll be steering clear of mRNA vaccines.
Getting vertigo after the vaccines sounds to me like an allergic reaction so I'm sorry you're dealing with nonsense pushback on that. UGh. I hate it when you go to doctors who do not respect the relationship you have with your own body! You know yourself! You know what works for you!
I watched this happen with my niece in the PICU. Some docs treated her with a 'her body will lead the conversation about her care', and others treated her as a set of numbers. Oncology was particularly bad about this. She was laying there, sedated, pale as the sheets she was on, and Onc was all, oh, well, her numbers look good, let's start her on more chemo. To which my sister responded, Over my dead body. That's not a well enough child to throw yet more rough medicine at.
You've really had a pile-on lately of change and stress. Sending all the hugs. I hope dancing helped and swimming will definitely help. Also getting through all the change and stress will help with natural weight loss. Is there a chance your body is holding on to some weight for protection? Mine does that. I have to literally give myself permission to let go, because I can keep us safe now.
no subject
Date: 2025-11-02 11:50 pm (UTC)I'm so sorry for the vaccine reaction, that sounds hellish. It's a good question about the allergic reaction, I am rarely allergic to things but if I were to have a reaction, it would probably be a weird one like that, the vertigo was really scary and it never really entirely went away, though the spells are very brief nowadays.
It's a really good question about the slight bit of extra weight, I imagine that yes, very likely some of this could be for safety, a buffer of sorts, protection for what my body perceives as long term threat and potential future uncertainty/instability. Hopefully once we are settled and I have more info from the oncology surgeon about what to expect going forward, I can start to manage my stress levels better. Right now I'm just going to have to be in survival mode for a bit and try not to beat myself up about not being at my best.
I am sooooooo looking forward to more swimming! I can't believe how good that felt. Their showers suck but I am so grateful for the lovely pool and soaking tub! It's such a blessing!
Your poor lil niece. How is she doing since being out? I'm sure there will be a lot of residual stress and fall out from the trauma of all that for you and your sister and for her. I'm glad she pulled through, it sounded really intense. It's so nice that you could be there for them.
no subject
Date: 2025-11-04 03:44 pm (UTC)That somatic perception of instability really can mess with us! I hope you get info from the onc doc soon so you can get into stress management, because yeah, survival mode is rough.
Yay for soaking tubs too! That's awesome.
She's doing OK. Definitely experiencing anxiety being out in the world, which makes total sense, and I'm really glad she already has a therapist. It was rough, but me too! So glad I could be there for them.