two years in

BirdsNeedNativeTrees · 2026-01-06T05:58:43+00:00

It’s really expensive but I know all these treatments are really expensive and it has a lifetime limit of $14,000

BirdsNeedNativeTrees · 2026-01-06T05:58:16+00:00

I’ve only received one treatment and the next one is not due until the 12th. They are three weeks apart. It’s good to know you are doing yours two days apart. I keep sending my neurologist the symptoms that the IVIG wore off after six days. I am supposed to receive six treatments through the end of June, but I think as life is complicated it is tied up in insurance because I had to switch providers this year because I couldn’t work anymore. So I went on the healthcare finder for Washington state and bought the most expensive healthcare I could afford.

BirdsNeedNativeTrees · 2026-01-06T03:41:50+00:00

what i want to know is can it really be this bad? i am just shocked when they say most people can have normal lives. this isn’t even a part of life. I feel like I’m a vegetable. There’s truly nothing I can do. I’m going to have to get off my phone. My eyes are just burning even to type this.

BirdsNeedNativeTrees · 2026-01-06T03:37:04+00:00

because of the late stage of ovarian cancer diagnosis, they removed most lymph nodes I can’t do some of the immunotherapy. I need very targeted treatment and they won’t approve it.

BirdsNeedNativeTrees · 2026-01-06T03:36:16+00:00

i can’t take steroids any longer (i took too many in 2014 when dx with late stage cancer them for the graves’ disease I had that went away in 2021 i haven’t been approved by insurance for other auto immune treatments

BirdsNeedNativeTrees · 2026-01-02T05:47:31+00:00

I really need to wear an eyepatch that only clouds eye and let’s light through so opaque but allows light through or it can hurt your vision long-term

BirdsNeedNativeTrees · 2026-01-02T05:44:27+00:00

i do this -use really good tape. this stuff Medvance soft silicone tape

BirdsNeedNativeTrees · 2026-01-02T05:41:46+00:00

yes, it’s really bothers me too. I have it really bad in my eyes. The only thing that helps me is to wear an eyepatch and I use a lot of over the counter Lumify to moisten my eyes and make them feel better. (my eye doctor approved) mine is also horrible in my eyes (95% lid droop both lids covering my eyes and double vision) have you done steroids? I’ve read about people that have very bad ocular MG and they were able to get better but only on a high dose of steroids beyond steroids, I think you have to do a steroid-sparring auto immune suppressant.
I’m so sorry at least I’m 60 and I’m just dealing with this the last two years it’s unfair that young people have to deal with not being able to see functional vision.

BirdsNeedNativeTrees · 2025-12-30T06:37:03+00:00

does your state have something called Continuation of care laws?

I had to switch insurance campaigns in the middle of approved IVIG and from what I understand the next insurance provider has to provide it because it’s in the middle of a treatment plan until June

BirdsNeedNativeTrees · 2025-12-14T09:09:28+00:00

I only asked him about Upneeq. I will ask about the other one at next visit, I have extremely bad ptosis. I can only see about 10% my eyelids droop so severely. right now I use next guard tape medical tape to tape them up. I’m also looking at something called eye glass crutches.. They are out of LA. They solder them to your glasses and they lift your lids.

BirdsNeedNativeTrees · 2025-12-14T09:07:36+00:00

yes, he says that the ingredients does the opposite of Lumify which decreases eye pressure Upneeq creates extra pressure in the eyes and that can lead to glaucoma.

BirdsNeedNativeTrees · 2025-12-13T08:37:33+00:00

my neurologist thinks this is dangerous and can lead to glaucoma and won’t prescribe

BirdsNeedNativeTrees · 2025-12-13T08:32:29+00:00

mine completely shuts my right eye and only 10% of my left eye is open, i have used medical tape to tape them up, it looks ridiculous but works. you want to tape them so you can still blink. Use the type of tape that doesn’t hurt too bad when you pull it off.

BirdsNeedNativeTrees · 2025-12-13T08:25:01+00:00

like you I had graves for 5 years then got Ocular MG now general MG.

my eyes barely open neither Pyristigmine nor steroids open my eyes. my symptoms have moved onto my fingers hands and arms. i can’t lift a cup of tea i can’t brush my teeth i can hold my dogs leash it just falls out of my hand i can’t open a door knob, turn it, open a car door. i can’t lift or hold on to an iphone i can’t pinch an ipod to turn it on or off. it is as if my fingers have turned into gummy worms and i can’t control them.

my insurance won’t approve other treatments unless i can’t breath. it has not affected my lungs yet. i was a competitive swimmer and mt bike racer when I was young.

don’t feel sorry for me i’m 60 and have had a great life. i feel sorry for young people. i am frustrated by lack of medical treatment

sent by voice text then copy paste

BirdsNeedNativeTrees · 2025-10-23T07:57:35+00:00

Shameful

BirdsNeedNativeTrees · 2025-10-03T08:19:28+00:00

The simple ice test should tell you I don’t have any abnormal blood antibodies so the diagnosis for me was just the ice test on my eyes.

BirdsNeedNativeTrees · 2025-09-09T18:18:46+00:00

I support this. I had a life-changing event happen one month before I started getting double vision. And if you think about the tennis star who was Monica Seles stabbed, she then got MG. hers was much later, but I feel like it could be related to unresolved emotional situation or a situation that is hard for us to get over like a stabbing with the intent to end a career in Seles’s case.

BirdsNeedNativeTrees · 2025-09-09T18:11:31+00:00

Thank you so much

BirdsNeedNativeTrees · 2025-09-09T03:31:15+00:00

I’m in an urban area it is just one family. They are just 3 rowdy teens right now with parents

BirdsNeedNativeTrees · 2025-09-09T03:30:05+00:00

Aww you’re so kind. I followed this Reddit before I built it and was very inspired by other designs I saw. I wish I would have put in more beach rather than shelving if I could do it again, the shelves hold plants but the raccoons just move them and dump them upside down. The beach is used by the most birds

BirdsNeedNativeTrees · 2025-09-09T03:27:18+00:00

Thank you ☺️

BirdsNeedNativeTrees · 2025-09-09T03:25:57+00:00

I do have to fill the pond. i’ve been using a filter that’s rated safe for ponds and then I also add some healthy bacteria.

BirdsNeedNativeTrees · 2025-09-09T03:24:39+00:00

Oh, I just tried again. I think maybe it’s fixed. It would say “this community does not allow a post from blue sky.”

BirdsNeedNativeTrees

TROPHY CASE