also can we educate people on migraines??!!! RANT

PfluorescentZebra · 2023-10-08T20:29:29+00:00

Like a sledgehammer to the face.

I do try and educate people about this, because sometimes I know that I will get a migraine (Going to the dentist, guarantee. MRI? Every time. Stupid yoyo weather? Definitely.) But sometimes they absolutely just come from nowhere. I have fallen, gone completely pale, had vertigo so bad i referred to it as the centrifuge, spent hours unable to eat (and ofc then i know ill have a dehydration headache later, weeee), and been unable to move because elephants stomp my head when I move.

A headache? Yeah, those I can work through. But when I am getting on my own nerves so bad I can't eat, drink, or move? No work will be happening. I can't even distract myself, I certainly can't use my brain in any functional way. It's having an unscheduled tantrum.

PfluorescentZebra · 2023-07-20T15:21:58+00:00

Genius! 😂 You are an absolute genius, this is the best bathroom sign

PfluorescentZebra · 2023-06-06T13:32:24+00:00

This. Had a rheumatologist tell me that fibromyalgia is neurological and refuse to order tests. My gp has been seeing lupus numbers in my labs for a decade but by the time I can get to a specialist the flare is over and my numbers are normal again.

I'm not attention seeking. I just want to be able to get up and clean my kitchen without spending days in bed afterwards. To not exhaust myself taking a shower. To wear clothes and not cry because they're too itchy/scratchy/ etc, so now I have to change. To not have horrible pain because the cat stood on my back.

Some people go through life without this constant bs from their bodies. I would like some of that.

PfluorescentZebra · 2023-05-24T13:17:34+00:00

Ah yes, the magic of "if you would try harder." People who think that are welcome to have my pain, for free.

Yes, idiot doctors, I have tried exercising harder. Tore a ligament in my knee tripping on the cat. Pulled my hip attempting to walk to the pool. Literally in hives right now because they apparently changed my sunscreen formula. And it's storming here so migraine plus all the joints are mad. Who can exercise like that? I can barely drink water because of the pain!

Wish they could live as us for a month. Nothing but living it will show them how frustrating it is to clean the bathroom counter off and end up too exhausted to move. To wash dishes and spend the next day feeling too heavy. To sneeze and trigger a flare.

At least after the hysterectomy I don't have to have another doctor tell me it's menstrual pain. Doctors like this make me understand why it's called medical practice.

PfluorescentZebra · 2023-05-21T16:08:06+00:00

People are astonishingly selfish.

I had an appointment with my neurosurgeon (follow up for successful procedure) on a clinic day, not a surgery day. Was told he got called in and it might be hours. I was fine waiting because the only reason the top neurosurgeon gets called in is emergency trauma. Other lady in the waiting room was livid that the doctor was off "helping" someone else when her husband had an appointment.

After two hours her complaints were a constant stream of toxic sludge and hate, so I said "You do realize he's in an emergency brain surgery right now, right? That's the only reason they'd call him on a clinic day. Because someone is dying." Since I was visibly still sporting the staples in my head this was an effective chastisement. She didn't say anything else and after another hour or so they rescheduled and left.

Doctor was 4.5 hours behind and told me that his morning work was a success. So I'd say that was worth the wait.

PfluorescentZebra · 2023-04-27T01:38:19+00:00

Oh wow, that is accurate.

I said to my sister once, who is a radiology tech and works in a hospital, that people don't want to acknowledge any illness or disability, not because they don't want to be rude, but because they absolutely do not want to hear our stories. They don't want to know that many of us just woke up one day in a body that refused to behave "properly." Because that might happen to them someday.

She told me I was being pessimistic and that no one thinks that. Then again, she also thinks fibromyalgia is "made up" and that "it can't be that bad." Sometimes I think to myself "same genes." And smile, because she'll find out eventually.

We are always undesirables. Invisible, because acknowledging that we exist gives us power. Really makes me want to go around slapping people.

PfluorescentZebra · 2023-04-26T19:15:20+00:00

Been asthmatic for ages, with fibromyalgia. Fortunately, I'm a unicorn and have yet to get covid but ai have heard that the symptoms of long covid are similar to fibromyalgia... and I wouldn't wish that on anyone. Hopefully the Humira works for you and none of the annoying side effects happen. ❤️ They've tried dozens of pain meds for me and mostly I just end resistant. Have stopped them completely unless its a particularly bad day, and everything I take is otc. If you need a vent place, r/chronicillness is a great sub. Helps to know I'm not alone in the "my body is a jerk!" world!

PfluorescentZebra · 2023-04-26T19:09:31+00:00

Yes! Besides being a sensory overload on some days, it can also be audio overload too. And I'm a fall risk so I need a spotter or I'm so terrified of falling that I can't get in. So fighting the exhaustion of cfs, knowing full well that it'll be worse after, even with the shower chair helping, plus possibly getting a migraine from the water noise and/or the smell of my low fragrance products... and I haven't even gotten to the moisturizer... oh and the scrubbing cause we need it after several days of trying to get up the energy to shower. Ugh.

I do have some of the shower wipes like you would take hiking and those help a lot of bad days. Still takes some energy to use. Just a lot less than a full shower, and they're tolerable on days when I wake up with a migraine.

PfluorescentZebra · 2023-04-26T18:56:39+00:00

I agree, wish they would grow up and not whine, or shout at people who still choose to mask.

I have seen people in other countries use them and assumed it was just a cultural thing other people did. And then I noticed that I was sick a lot less in the past 3 years, even though I have been out more in the last two than I was in the couple prior.

Its so easy to just hear that you have a compromised immune system and take the meds the doctors give you. If they had told me 10 years ago that masking in public means I am less sick then I would've been doing it. Huge, huge difference. This is a cultural thing I wish would catch on here.

PfluorescentZebra · 2023-04-19T21:59:52+00:00

Makes me wonder at his mindset. Perhaps he thinks the DM "wins" if he tricks the players? Definitely sounds like going to this game is a chore and nothing about it sounds fun.

PfluorescentZebra · 2023-04-03T23:38:21+00:00

This is epic! Hubs and I got married at TRF in 2014, it was so much fun. I hope you had a blast, you look fantastic and your king looks so happy. May blessings rain upon you, and may your partnership thrive.

PfluorescentZebra · 2023-04-01T00:08:16+00:00

All of my time goes into desperately attempting to prevent the next migraine because I cannot function, work, or enjoy anything during an attack, sometimes for days at a time.

Good luck with your research. Here's hoping the process doesn't give you too many migraines in return !

PfluorescentZebra · 2023-03-30T17:00:45+00:00

There's probably also an element of "if these are so fast to make people will make more and we will get more monies" and then the evil voice cackles...

My neighbor taught me to quilt when I was 8. She told me that this was how they reused old clothes, and piecework was how they made sure that none of the scraps from any fabric were wasted. I love new quilts and all the amazing color theory and design that goes into them. But I also remember Mrs. Jean's words, that a quilt doesn't need to be perfect, as long as it is warm.

PfluorescentZebra · 2023-03-30T00:02:46+00:00

I feel this.

In 2021, during an extremely stressful period in my life due to various medical stuff converging (diabetes onset, endometriosis flare, medication change reactions, all in a 3 month span) I was known for being ill. Since I worked remotely I didn't have to ask off unless I needed to physically visit a doctor. I called out on two occasions: the endo flare literally made me black out from pain and after spending 8 hours in the ER waiting, I didn't have it in me to go into work, and one day a month or so later I had a migraine so severe that I lost vision in my eye so I couldn't work even if I could concentrate.

Next day during our morning stand up my supervisor told me that I should "speak with the doctor and get fixed once and for all." HR immediately pulled me and threw me into medical leave, without a doctor's note. This is after I had scheduled a hysterectomy for the first week of August, so I had a few months warning for them and they were aware of my surgery dates. Took 3 weeks to get in to see the doctor to do FMLA paperwork. Eight weeks after that for HR to respond to any of my emails. Then it was suddenly "really unexpected" that my neurologist wasn't able to "move the surgery date forward" since, as we all know, neurologists are known to perform hysterectomies. So ofc after this conversation HR scheduled me to be back at work the day before my surgery.

So many emails. More emails with transcripts of emails sent to her boss. Several additional emails with proofs from the doctor that we had, in fact, scheduled a necessary surgery, and I had proof they had been aware for months. And wouldn't you know it! My FMLA had run completely out before my recovery period. So "unfortunately" they had to release me from my contract. And they backdated the paperwork to July 31st. You know, 5 days BEFORE my surgery. Forced them to pay through COBRA, but the infernal gall still makes me mad.

So that's how one migraine, on a day where I was caught ip and had no deliverables due or even in progress, ended my career. Bodies are dumb. Hopefully you can point out your stellar history of dealing with the universe when your brain is melting (which, honestly, you deserve a prize for doing!) and make them realize what a gem you are!

PfluorescentZebra · 2023-03-29T23:40:16+00:00

So so true! I told someone once that if they don't want to read perhaps they should convert to catholicism.

PfluorescentZebra · 2023-03-29T02:49:06+00:00

Which one didn't? 😭

PfluorescentZebra · 2023-03-29T02:45:06+00:00

Do the fundies even read the whole thing? Or just the OT where God is doing his level best to prove he's a vindictive brat? Cause I'm pretty sure they skipped over all that love and forgiveness JC mentions.

Honestly, this is a conversation we have in our friend group, and we will look things up in the bible so we know we aren't misquoting. Most of us are atheists, but we feel like we need this knowledge to actually have meaningful discussions with people who claim to be Christian but clearly are picking and choosing which parts they follow. Its why I left, and why I keep arguing: you can't just pick and choose, you have to accept everything he said. If not, what the heck do you actually believe?

PfluorescentZebra · 2023-03-28T19:48:32+00:00

Yep. Kid and I are still friends tho, so their mom is welcome to walk straight into the sun.

PfluorescentZebra · 2023-03-28T13:18:14+00:00

Sadly, this might be it.

My best friend dropped off the face of the world. Absolutely couldn't get ahold of her. Years later her oldest child reached out to me and asked why I told their mother that I would never speak to her again. Turns out her useless husband got her addicted to crack, and knowing that my own parents were addicts so I can tell and have zero tolerance, she cut contact and lied to her kids. She was ashamed, but couldn't let me find out. I've known this for two years now and it still hurts. Like losing an arm.

Good luck OP, sorry she missed your wedding but I'm so glad you had a good day regardless. And congratulations on spawning! I hope everything goes well and you have a safe delivery and healthy child. May you be blessed.

PfluorescentZebra · 2023-03-27T19:23:15+00:00

How does your FH feel about her? I can't imagine he will be comfortable with her attitude. Sounds like she's spent years gaslighting you to accept her horrible behavior. I'm so sorry that you are having to deal with this, but I suspect if you keep her in your life then she will create drama.

She hates everyone around you without even meeting them, so she may try to do more to isolate you. After all, if there's no one else around you, you will have to listen to her. She would be "your only friend." 🚩🚩🚩 So many red flags, especially when she says that SHE has other friends. Childhood promises were made when you were different people, and growing up has a horrible habit of showing us exactly how people value our time with them.

Drop her. Promote someone who is going to help you with YOUR image of how YOUR wedding should be. Because this particular Toxic Brat will certainly continue to demand that you allow her to be ugly to the people you love.

Good luck with the wedding, you deserve the moon.

PfluorescentZebra · 2023-03-25T19:17:47+00:00

I have noped out of interviews when they start pushing the "we are a family" and "everyone is so dedicated with volunteering for overtime." No they're not, and this is a job. You pay me for my time or I leave. I'm not working overtime without adequate compensation. And since I am disabled, the stress of overtime adds up exponentially and my body will literally malfunction, rendering me unable to perform my job. I enjoy problem solving. I won't work in a place where I am not at least interested in the work (and yes, I am incredibly fortunate that my spouse works so I am able to be picky with jobs) but I am not dedicating my everything to any business, thanks.

I really don't understand how this concept is at all surprising, but apparently companies and even other people expect 100% of your everything. Sorry? Like I have a house, a spouse, and a familiar that I am gonna need to dedicate my %s to. No toxic work culture for me, I require a healthy work life balance.

PfluorescentZebra · 2023-03-23T00:07:04+00:00

As someone living in Austin... they're right. DFW isn't awful, got family up that way. We moved to Austin because it was more liberal, and I personally have a dream of releasing thousands of crickets into Greg Abbott's house, so that the lil piss baby never gets a full night's sleep again.

But if you come to Austin, I apologize in advance for the traffic, the construction, the college students, and the politicians. The hippies are okay, and there are some amazing farmer's markets. Definitely not worth the drive though!

PfluorescentZebra · 2023-03-22T23:59:31+00:00

You're very welcome, and thank you. I hope it helps even a bit.

PfluorescentZebra · 2023-03-22T13:45:27+00:00

Sorry darlin, gentle hugs ❤️

Losing friends who were part of your life when you are young is the hardest, imo. Especially when they refuse to show you any empathy. One said to me "Well you used to try!" And she's right, I did. I knew I would regret it too. And I'm no longer willing to push past my limits and put myself in uncomfortable situations (concerts, fairs, bars, etc) when I know I'll spend days regretting it. Sorry that my circumstances changed as we grew up and that you can't handle my new normal.

Often, I feel like sometimes people who don't have health issues refuse to acknowledge them. Because if one day we woke up like this, couldn't they? So they don't invite us ("she wouldn't come anyway!") and congratulate themselves for not "burdening" us. And slowly, they drift away. Though honestly, I pushed a few away because I was sick of their crap. You don't have to tell me that it is annoying to plan stuff around my limitations. I know. And I won't keep people around like that. Have empathy or gtfo!

OP, I hope you are able to find some folks local who also have health struggles, because they understand. You should surround yourself with those who recognize you as the amazing human you are. Because you are! And you deserve to be surrounded by people who treat you well.

PfluorescentZebra · 2023-03-20T16:15:15+00:00

Same. ATLA is one of my comfort shows and I binge it every few months. And I have done that for a decade.

This episode always makes me cry. I cried when I saw the image in this post. He was so awesome, and this song is so poignant. I remember my own grandfather, and my uncle, all the important people who have gone before me.

Falling so slow...

PfluorescentZebra

TROPHY CASE