jackalope78

[jackalope78]

I'm rewatching Elementary for the IDK how many times. I just really love the two of them. Lucy Lui as Joan Watson is just fantastic and my favorite person of Watson.

#elementary #joan watson #sherlock holmes

[jackalope78]

Ugh. It's a bad hand day today. They're just clumsy and moving funny. The Bacoflin I take for spasticity is helping a bit, but things are just taking too long. I cut onions for breakfast this morning, and they were not up to my usual standards. I also really need to go to both petsmart and the grocery store. But ugh. Just ugh. At least it's not a work day, and I don't have to struggle through typing while my hands are uncooperative.

#vent post #ms symptoms

[jackalope78]

So I binged the new Bridgerton episodes, and I had forgotten that Lady Danbury has a walking stick, and seeing her walk around like the boss that she is with that stick was so amazing. It's so weird, i never thought about it before i needed a cane/walking stick beyond oh nice representation, but now it's like, OMG MEEEEEEEE. I said out loud, I want that walking stick, at some point.

#bridgerton #representation in media #cane #mobility aid

[jackalope78]

Just updating to say that so far the retuximab side effects have been minimal. Knock wood. I have one more infusinion next week, so two to start with, and then it'll be once every six months until... I don't know, they come up with a better treatment? Or the side effects are too awful? or I die?

Coming to the realization of what a chronic ilness really means is... oof not easy. This is forever, or at least for as long as I live.

I don't think I was prepared for how jealous I get. I see people doing physical feats, even things just as simple as dancing, and I don't think "OMG HOW COOL THAT HUMANS CAN DO THAT" I get bitter and jealous and just so angry.

And I'm not in that bad of a shape. I can move. I will probably improve if I do my physical therapy and move my body. But I know that leaping around is probably not going to be something I can do, because right now just stepping down the stairs without a railing or assistance is scary, because my balance is off.

And I don't want to be an angry or bitter person. I don't. But represing these feelings isn't going to make them go away. So I'm holding to the hope that I will be ok, that I won't get worse. And I'm clinging to the things that make me happy, like my cat who snuggles into my shoulder and purrs and makes everything wonderful for just that moment.

#multiple sclerosis #ms #cats #too many thoughts

[jackalope78]

I like looking nice and feeling pretty. I don't wear makeup on the daily because it is too much effort to both put on and take off, but I value aesthetics in my appearance. I have nice dresses, lots of jewelry, belts, scarves, shawls, and various fashion trappings. Hold here while I divert for a second.

I've been getting ads for various mobility aids (because Big Brother is indeed listening), and I saw these shoes that are supposed to help with the MS walk. Which I have, I'm not lifting my feet, I swing my legs, etc. It's not usually bad, but it's there, and it's exacerbated when I'm tired. So while I don't need these shoes, I could use them. Especially on days when I have to walk a lot.

The problem? They're HIDEOUS. Awful, awful affronts against shoes. And so I would never wear them, because I like looking nice, and nothing about those shoes is about aesthetics. Nothing.

And like, I am fully prepared to embrace the crone look. I've long since let my hair go grey. I don't love my cane, and I'm in the market for a fun walking stick to use instead (approved by PT because it's for balance, not support). But I don't mind it. It's a fairly standard metal cane, no real art, just pure function. And it does kind of bother me because surely there can be a balance between function and beauty. Something more than just an aftermarket beautification, a cane that just comes pretty with no modifications needed.

Humans love pretty things. We love making pretty and useful things. Why can we not find a balance between cute shoes and shoes that won't trip me up when my MS walk flares up? Is that really so much to ask?

#multiple sclerosis #mobility aid #it's about the aesthetics #but i like cute shoes

[jackalope78]

best brownies in the known universe (at least, according to my grandma)

some year and a half ago when i was getting ready to move out i combed through all the family recipes that lay lost to time and one of the ones that i found was my grandmas brownie recipe. idk where she got it from (nor can i ask cause she has dementia) and its a printed out email she sent to my mom in june 2000. but by george these the best brownies i have ever tasted. would she be pleased that i am sharing this recipe with my vast following? absolutely.

YOU WILL NEED:

5 tablespoons butter (unsalted) 1 ounce unsweetened baking chocolate (or as much as your heart desires) 2/3 cup unsweetened good cocoa powder 1 cup sugar (white) (superfine preferred, normal works fine) 1 cup sifted white flour (can use gluten free) 1/2 teaspoon baking powder as much cinnamon as your heart desires (your heart needs to desire at least some cinnamon. its essential to the recipe) 3 egg whites 1 egg splash of vanilla extract (again, non negotiable step!)

preheat your oven to 325 degrees. grease a square baking pan (9x9 preferably).

in a small saucepan over medium heat melt the butter and baking chocolate. while that is melting, sift together the flour, baking powder and cinnamon into a small bowl. once the butter and chocolate is done melting add the cocoa powder and cook it together for 1 minute. add in the sugar and stir. it will get very thick. this is correct.

set that aside to cool. while thats cooling take a large bowl and put in your egg whites, egg and vanilla. beat it up with preferably a whisk but you can use a fork if youre fresh out of whisks. once the chocolate is cool enough to not scramble your eggs dump it in the eggs and mix it together. add the flour in gradually and keep mixing until its smooth and happy.

spread into your greased baking pan. put it in the oven for EXACLTLY 18 MINUTES. very crucial step. they will come out slightly under done. that is what we want. as they cool they will continue to cook in the pan. we dont want them to get hard and sad. they are not good when they are hard and sad. do not overbake them. you will be sad.

slice them up and as the official last step on the original recipe says: EAT ENJOY AND MAKE MORE! (theyre very good with mint chocolate chip ice cream)

[jackalope78]

The thing I am learning about spoon theory, whether because it was missing from the dialogue or because I wasn't paying attention, is that you do not have the same consistent number of spoons in a day. Some days, you have ALL spoons. Some days, you have none, and not just because you borrowed some of today's spoons yesterday. And sometimes, you don't know how many spoons you're gonna get until you've used them up and you're in the parking lot of the grocery store tying to figure out how you're gonna drive home and get your groceries up to your apartment.

You know, for example.

#spoon theory #ms #chronic illness

[jackalope78]

[jackalope78]

Oof, this hits. My mom keeps asking me when I think I'll see improvement, and I keep saying that I don't expect to, and it's like that fact just doesn't sink in. I'm hoping when she actually lays eyes on me and sees that I'm ok, really, she'll calm down a bit

hate how obnoxious abled people get the moment i so much as vaguely imply any part of my disability might possibly be permanent

i understand that the mere concept scares you shitless and your feelings are valid etc but fucking keep it to yourself, yeah? maybe read a book about how not to be an ableist cunt while you're at it

[jackalope78]

The thing about having a pet when you have a disease that can disable you is that they refuse to let you stay in bed and feel sorry for yourself. Brought to you by my cat who told me that she was hungry and it didn't really matter that I wanted to sleep all day yesterday, she would like her dinner and then her breakfast this morning. So even though the physical therapist didn't like that a small, moving, tripping hazard lives with me, I think her ability to make me stop wallowing counterbalances the potential tripping.

#multiple sclerosis

[jackalope78]

[jackalope78]

The IV infusion went well. No reactions, and the nuse was really pleased with how I was doing. I'm really tired right now, but I feel ok. Gonna see how tomorrow is, but I may even go into work.

Here we go. About to get my first round. I'm so nervous. I have no idea what to expect really. And I'm staring the day kind of tired, because it's just a bad day, symptom wise.

#multiple sclerosis #treatment

[jackalope78]

Here we go. About to get my first round. I'm so nervous. I have no idea what to expect really. And I'm staring the day kind of tired, because it's just a bad day, symptom wise.

#multiple sclerosis #ms symptoms #treatment

[jackalope78]

I would like more words for tired. Cause I'm not tired, sleep wouldn't make me feel better and I'm not sure I COULD sleep. Weary has a spiritual connotation that doesn't quite work. Exhausted is too much (and implies the solution is sleep, which as we've discussed isn't it). I'm just... tired. Low energy. Can't do anything but sit on the couch and pet my cat, because everything else takes up energy I just don't have. But it's not tired in the way most people think. So I need a new word.

#multiple sclerosis #ms symptoms #weary #i need more words #come on english make with the word thievery

[jackalope78]

On the other hand, maybe "I done fucked up and now I'm trying to redeem myself" is ok too. We'll see where Baris's story goes.

Watching Tales of the Empire and realizing I don't want these stories. I don't want the story of how someone used their hate and anger to survive and become more awful. I want the story of someone like Leia, who suffered and STILL managed to be a good person. I want the story of a person who feels anger but doesn't let it define them. I want aspiration fiction, not warning fiction. Fiction that says, become like this instead of this is what you could become if you're not careful.

#bariss offee #tales of the empire #star wars

[jackalope78]

Watching Tales of the Empire and realizing I don't want these stories. I don't want the story of how someone used their hate and anger to survive and become more awful. I want the story of someone like Leia, who suffered and STILL managed to be a good person. I want the story of a person who feels anger but doesn't let it define them. I want aspiration fiction, not warning fiction. Fiction that says, become like this instead of this is what you could become if you're not careful.

#star wars #tales of the empire

[jackalope78]

Starting Treatment

I'm starting treatment next week. Which is great! But also kind of nerve wracking. A week from today I will officially be immunocompromsed, and that'll be true probably for the rest of my life, or until a better treatment option comes along.

It's a little scary to think about being immunocompromisd though, especially because COVID seem to make it's way around my office about once every six months or so. We're in the latest round of it right now. I will say, a few people made sure to specifically let me know that Person X had it because they wanted to make sure I was ok and hadn't interacted with them. That is nice of them.

But yes, starting treatment next week. I've arranged for friends to drop me off at the medical center where I'll be for FOUR TO FIVE HOURS and then another person to come and pick me up after. While I was making those arrangments, the person who is going to pick me up offered to come immediately after she drops her daughter off at school and just sit with me the whole time, which is so nice of her. Honestly, the people around me have just been so amazing and supportive, willing to step in and help where ever they can. I'm worried it won't last, but for now I'm gonna take it.

In other news, I've been made aware that anxiety and depression are common symptoms of MS, and I'm wondering how much is that from being diagnosed with an incurable and potentially debilitating disease and how much of it is because MS attacks the brain and thus alters your brain chemestry? I mean, is there really a difference? Probably not for treatment, but I'm curious. I have anxiety and depression issues anyway, going back to my teenage years, though I haven't had a bad flare up in a long while. Hopefully, the MS doesn't trigger anything, though I have been considering getting myself a therapist to help process this new diagnosis. An internet aquaintance, someone I met once but was friendly with online, had MS, and she commited suicide a few years back. It devestated me at the time, and I'm worried about that happening to me now. I have dealt with suicidal ideation in the past, I'm good right now and I would like to stay that way. The more I think about this, by writing it down, the more I do think I should probably get a therapist so that someone professional can keep an eye on me. It's far too easy to become a boiled frog, especially when you live alone and have a bad habit of hiding bad symptoms from your friends. HI IT'S ME. I'M THE BOILED FROG.

But today, today is a good day. And yesterday was a good day. So I'm gonna hold onto those days while they're here.

#multiple sclerosis #ms symptoms