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Wishing you all the best possible outcomes here. I know (in a smaller way) first-hand how devastating it is to be told that there is little to nothing that can be done about the things going wrong in your body.
With some trepidation (I don't want to sound like you should be happy with all this) I will relay a thing that happened to me a couple of days after I found myself weeping in public after a phone call with my doctor.
I got into a conversation with a neighbor who is partially blind and uses a cane. He was telling me a little about living with his condition and the inevitability of totally losing his sight. (He knew nothing about what had just happened with my health.) After a little more conversation he startled me by saying "I've realized after a couple of years that in a way I see things more clearly now than I did before." I was flabbergasted, it was like a feel-good movie script had actually happened to me. He was in no way trying to engage in phony happy talk. It was his simple truth.
Whatever happens with your health, I wish you the best.
I'm so sorry to hear about your health issues, too. 💜
I've heard similar things in an online support group for people with this condition. Some of them have lost most of their vision, but they talked about changing their perspective in life and said that although it's hard, you do adjust. They seemed to have found peace.
I am so sorry about your health problems and I wish you luck. I hope you can take some time to get out into nature, it is so good for helping with stress relief.
Not that this should be on you, but try to keep up with the medical literature for your condition. New things are discovered all the time and even the best doctors can't keep up with it all. There may be a new treatment in the future.
Remote hug!
I do love gardening! I haven't been watering my plants lately because of everything else that's been happening (some of them need heat stress to bloom anyway), but I'll try to get back into it a bit.
I really hope new treatments are found for this condition. When I have a bit more mental space I'll start doing my research. I'm just too panicked at the moment.
I'm so sorry to hear this. You need to prioritise your health right now, especially your emotional and mental health. Take a step back from everything else, let other women archive this website.
Coming to terms with this kind of life altering change can be hard. Its a process similar to the stages of grief. Have a look online for support groups and charities relating to your diagnosis, and try to connect with other women who know what you are going through. They will know if there is any support available, and may also know if there are any benefits you can claim and help your through that process.
💜 I think I will seek out support groups in time, maybe not right now though. I have looked at support groups, but they were very depressing seeing what they're dealing with even with a lot of intervention, and also confusing considering how little is known about the condition and how much contradictory information there is. Maybe when I'm less panicked...
And yes, I do feel like I'm grieving. I guess I am really.
That sounds absolutely terrifying. I’m glad you’re getting help now. Hopefully there is treatment available to stop this in its tracks and get you some help.
Other people are working to archive the site and save content. Even more people are working to keep us collected elsewhere online. You absolutely can take a rest and focus on your health.
Is there anything in particular you need or want saved? We are here to help you.
There is treatment, thankfully, but not much is known about the condition. I really hope my case is one of the more treatable ones— unfortunately there are some patients who don't respond much to any treatment. All I can do is just go to my appointments and try not to freak out and assume worst case scenario, but I have to admit it's hard not to.
I'm not even sure what I want saved, really. It's really overwhelming. I guess what comes to mind is evidence of all the shit things TIMs and TRAs do to women that has been compiled here over time, things they will do doubt deny when the time comes. Another thing might be evidence against conservatives' attempts to take credit for the pushback against trans— they're always stealing feminists' ideas and then going, "wHeRe ArE tHe FeMiNiStS??" while their audiences clap like seals. But this all happened before when r/gendercritical was shut down without warning— it was all just gone, and then we recovered.
Hey, have you seen this post? It looks like the site is being archived:
I’m so sorry. Big hug to you. Take care of yourself right now, and if you can try to take it one day at a time. And if you need to, take it one hour at a time or 20 minutes at a time or 5 minutes at a time. There are so many resources available and whatever happens (and right now, you don’t know what the outcome will be) it will be okay. This is not too lighten or minimize what you are going through, just trying to send support so that you can get through the storm. Love and respect to you, sister.
Thank you. 💜 I'll try to take some time out every day just to unwind. It sucks because stress exacerbates the condition, which is making me smile as I write this because come on, that's basically funny in its absurd unfairness.
That’s poignantly unfair.
If you’re looking for other resources (and you didn’t say you were so just throwing this out there) I really like Martha Beck’s work and Byron Katie’s work. It helped me cope with some big stuff that I couldn’t control and helped me find the grace I desperately needed to get through tough times. Martha has a podcast called The Gathering Room that I really like and it’s short and sweet. There’s one called “Staying Sane, No Matter What” and it had a solid meditation and coaching that was really nice.
Byron Katie’s “Loving What Is” on audio book is also great (her voice is very comforting as well IMO). Just sharing these since this site is about to go down and in case they could help you de stress a bit so that you can focus on healing. Again, more hugs!
Thank you, I've put those names in my notepad app and I'll look into their work. I looked them up and Byron Katie's philosophy sounds particularly interesting.
I am so sorry this has happened to you. Life is very unfair. I hope that some useful professional support is available to you. Friends and family can be great if one has them, but if you're anything like me, you can hold back from asking for fear of being a burden. The crying is probably healthier than bottling it all upside. Big, big hugs.
Thank you. 💜 I had counselling last year, and I need I need to arrange it again for this year, especially now. I have a small support system, but yes, it would be good to talk to a professional too for those reasons. And yes, I think the crying is healthy. I feel better afterwards.
Im so sorry. I'm sending you love and strength, may you find the best path available ♥️
Do what you can to develop some relaxation skills/techniques as you navigate and adjust; stress can exacerbate eye issues and other issues.
I fully sympathize with the panic and grief that comes with losing sight. It can feel very lonely and unfair. I hope things only improve for you and that your worries won't be realized.
Thank you. 💜 I have to admit, the fact that stress exacerbates the condition has only made me much more stressed and confused and frustrated. But it's still true. I think I need time to adjust to my new reality. But I will try to practise deep breathing, read or do something to de-stress to cope with the day-to-day.
That's terrible. Hope you can find what you need to go into remission.
I hope so too. I guess I can only wait and see at this stage, but here's hoping 🙏
Awful, so sorry! 😔
I feel a bit better now. It really helped to see people were reading and sympathised 💜
I am so so sorry, that all sounds devastating!
I'm so sorry you're going through this. Your health should be your priority right now. I hope you find an effective treatment.
Thank you 💜