I'm freaking out a bit.

[LuckyCharms]

Taking Xanax and pot gummies on alternate days to try to calm myself down.

I don't want to scare my wife...she has enough on her plate. She gets scared when I'm sick.

Woke up the other day mostly blind. Dumped "Systane" eye drops in my eyes all day...eyes eventually cleared up to the point of tolerability. My floaters are ridiculous. Straight lines are crooked. Letters of the alphabet all run together like jackstraws.

I have 3 doctors...a retina specialist, a regular eye doc, and an optometrist. All 3 of them are so goddamn busy, that they spend about 3 minutes explaining this shit to you before running off to the next patient. They skirt around my question "Am I going blind". Retina doc says it's the front of the eye causing the problems. Regular eye doc says its the retinas.

I get Eylea eye injections. They help for a bit sometimes.

Here's what the report from my last visit to my regular eye doc says:

Established patient. Type 1 with ocular complications. Severe nonproliferative diabetic retinopathy OU. Dry eye syndrome OU. Meibomian gland dysfunction all 4 lids. Macular RPE changes. Diabetic Macular edema OS. Vitreous floaters OU. Posterior capsular haze OU. pseudophakia OU.

The above is from the regular eye doc...not the retina doc. I don't have a write up for those problems.

I've been posting here either way too much, or hardly at all. That's because I'm scared shitless.

I have some real-life shoulders I can cry on, but those that I can cry with depend on me, so I don't want to scare them, so I type out my fear here.

I'm scared, and this sucks so bad. no response needed, I'm just venting. I'm going to get off the computer and go work myself to exhaustion so I can get some sleep.

Thanks for reading.

[underpants]

1. We're pulling for you. ❤️

[irisblue]

2. What underpants said.

[Harker]

4. Yes.

[pat_k]

45. +1

[Lifeafter70]

3. Sending a warm hug your way

[niyad]

5. Hugggggs. We are all here for you.

[erronis]

6. I've found, over the last 10+ years, that personalized caring has decreased tremendously.

Everything has shifted to a very limited insurance-dictated window for seeing the patient and then dealing with all the forms. The continuity of care has disappeared.

The primary care doctors are mainly gate-keepers for the insurance companies. They may really want to know their patients, but they aren't reimbursed for that time.

Most optometry-ophthalmology practices have been taken over by the big corporations who have no connection to the patients.

Super-specialized practitioners are making big bucks, but there's no "whole" patient approach. My cardiologist doesn't want to know about my blood cancer numbers (oncologist) - and vise-versa. Don't get paid for dealing with things outside of their ICD codes.

In these cases we need a personal hero - a doctor or nurse who knows the system and will take the time to advocate for our particular case. Sometimes good hospitals have some type of ombudsman role, perhaps you can find one for your eye problems. (I have glaucoma and early macular degeneration - runs in family.)

Good luck!!!

[pat_k]

50. Can't overestimate how critical being your own advocate is.

The "system" sucks, but I am also exhausted with pushing my step-father to take responsibility for his own care.

Without going into too much detail, he went for years being "watched" for MGUS. When I became aware of what was going on and learned about the wide range of symptoms he was dealing with, I hooked him up with a specialist that was running an amyloidosis clinical trial. Finally, long overdue testing was done and he was diagnosed with amyloidosis and entered the trial, which was for two groups -- both standard protocols, one with the test medication.

That was 10 years ago. Finally getting treatment was a very good thing, but diagnosis should have happened far, far, far sooner. And over the past 10 years I feel like I'm banging my head against a wall to help him get the care he needs -- and the wall is not "the system" -- the wall is him and his failure to effectively advocate for himself. The disease has a complex set of effects. I feel like I'm pulling teeth to get him to discuss symptoms and get referrals he needs.

Yes, the doctors should be asking the right questions, but over and over when I ask what was addressed in this or that appointment, he has either completely failed to mention any of the obviously heart failure related symptoms, or he has given them a list so long, vague, and varied in terms of seriousness that it would be impossible for any doctor of any specialty to even begin to address.

Anyway, this is just my little vent about trying to help an 85 year-old man -- who is now obviously seriously depressed on top of everything else, but stubbornly refuses to even attempt a trial of anti-depressants; who refuses to install the rails and other needed devices to make his home livable (and he does have the money); who refuses to bring in any sort of help with cleaning, who is not demanding certain referrals that are clearly called for... arrghh.

Not sure what sent me off on this diatribe.

[Marthe48]

7. It's scary

The straight lines went crooked for me in 2000. I was diagnosed with a type of wet macular degeneration in my right eye and not to scare you, but my eye doctor treated it as an emergency. At the time, laser treatment was available, and the dr. who treated me stopped the leaking and the progression. His treatment lasted till 2018, when I got cataract surgery done on that eye. The cataract surgery started the MD again. The dr. didn't tell me that, or I wouldn't gotten the cataract removed. Laser treatment isn't available now. My vision in my right eye is ruined. I won't get cataract surgery on my left eye. I can see ok, but I'm preparing myself for eventual loss of vision. I'm older than you are, and I'm hoping this old bod will hold up till I don't need it.

I think you should look for another retinal specialist, even if they are some distance away. The doctor who treated my eye in 2000 was in Canton, Ohio, don't know if he is retired or not. Vitreo-Retina Consultants. I also went to Cleveland Clinic Cole Institute after the cataract surgery. I got the shots, too, stopped going because of Covid. I had to take anti-anxiety med because I got so worked up thinking about getting the shots. I wish I could've gotten the laser treatment, but it can destroy more vision than it helps.

If you can get in to see your doctor, do that. If you have an Amsler grid, see if one or both eyes are affected by the vision problems. Rest your eyes as much as you can. I don't want to tell you what to do. but maybe your wife would like to know and share your burden. My husband was fabulous and helped me get through 2000. I wish he'd been here for the disaster in 2018. Take care of yourself.

[cate94]

8. Sending hugs

That would scare me too.

[SuzyandPuffpuff]

9. Next visit

demand that your Dr spend time with you. Answers your questions...gives you a game plan and damn well listens to you and your concerns. Our medical society is a joke. Demand what you pay for . Answers.

[KS Toronado]

10. A nice reminder that there are sicker people than me here on DU.

[LuckyCharms]

48. We don't communicate often, but I read your posts...

and I know what you are going through.

You hang tough, OK?

My best wished to you for a favorable outcome.

Feel free to message me if you ever need someone to listen.

[KS Toronado]

51. OK Lucky practice what you preach .........."You hang tough, OK?"

Doing the best I can.

[LuckyCharms]

52. You better be doing the best you can!

If this means anything to you...I think you're going to be alright. And I'm never wrong!

[Marthe48]

75. I keep you in mind

In my prayers daily.

[FakeNoose]

11. I hear you and I understand

A very good friend of mine for over 30 years is losing her eyesight to macular disorders. She's legally blind and hasn't been able to drive for over 10 years. Luckily she has family and friends to help her out, also Access for trips to the doctor appointments etc. But still it's very difficult for her to get out much. She has limited vision, so a special magnifying glass allows her to read a very little bit. It's almost impossible for her to "watch" TV, but she can listen to it for the news and weather. No computers or internet of course.

The important thing is to listen to your doctors and trust them. They have your best interests at heart and they will do whatever is necessary to help you stay healthy. My friend has sweet little dog to keep her company and it really seems to help her a lot.

Good luck and may God bless you!

[littlemissmartypants]

12. Not trying to complicate your anxiety but...

I'd suggest that you go to a neurologist. Changes in vision are a warning sign for stroke.

If your other docs are too busy...
You need a fresh pair of eyes on the issue. Seriously and pun intended.

We love you, LC.

Action conquers fear.

❤️

[LuckyCharms]

66. You know, on this exact date last year, 2025...

I went to the ER because I had a hole in my vision.

They stroke alerted me, and I thought the entire hospital staff ran into that little room asking me questions.

It wasn't a stroke last time, but I had two previous strokes prior to this, hence, their concern.

First stroke was an eye stroke that caused a Hollenhorst plaque in my retina, putting me on blood thinners forever.

Then, I had a lacunar stroke and went to a neurologist after receiving an MRI, and he told me it was just a migraine, when two other doctors subsequently read the MRI and told me that the neurologist was full of shit and that the MRI definitively showed a stroke.

You can't win!

[littlemissmartypants]

70. Did you find a new neurologist? Did anyone actually share with you that you...

Have increased chances of subsequent strokes with every stroke that you have already had?

How's your blood pressure?

How fast can you dial 911?

How far away from the nearest ambulance or medical rescue service are you?

Symptoms of stroke include but are not limited to:
• Trouble speaking and understanding what others are saying. A person having a stroke may be confused, slur words, or may not be able to understand speech.
• Numbness, weakness, or paralysis in the face, arm, or leg. This often affects just one side of the body. The person can try to raise both arms over the head. If one arm begins to fall, it may be a sign of a stroke. Also, one side of the mouth may drop when trying to smile.
• Problems seeing in one or both eyes. The person may suddenly have blurred or blackened vision in one or both eyes. Or the person may see double.
• Headache. A sudden, severe headache may be a symptom of a stroke. Vomiting, dizziness, and a change in consciousness may occur with the headache.
• Trouble walking. Someone having a stroke may stumble or lose balance or coordination.

Play to win, LC.
Fail to plan, plan to fail.
Either way, we still love you.

❤️

[LuckyCharms]

71. LMSP....

You are very kind.

All the neurologists around here are in the same group. I'm not going to say too much about them, except that there are some issues...

Blood pressure is good...controlled with 3 medications.

My wife checks on me often. I tell her not to worry because I have good life insurance.

We sleep in separate rooms because I have to sleep in a recliner...but I have a doorbell to a wireless system next to me that i can ring to wake her up downstairs. The only time I had to use it...she didn't wake up! I also have her wake me up in the middle of the night if she takes the dog out...she hates doing that, but I tell her that I don't want to find her dead in the backyard 5 hours later when I wake up!

I can dial 911 pretty fast because I have a special phone that has "11" on it, so I only have to hit the buttons twice instead of 3 times!!

Ambulance is only 2 miles away.

[littlemissmartypants]

72. Don't make me have to come over there, LC!

🤓😉🌞

[LuckyCharms]

73. I'm ringing my doorbell button!!!!

How come you're not here yet???

Are you sleeping?

[littlemissmartypants]

74. I'm paddling as fast as I can.

One oar in the water.

[LuckyCharms]

76. One oar?

You must be going in circles!

[littlemissmartypants]

77. 😉

[LymphocyteLover]

13. Good luck, seriously! But you should tell your wife. She needs to know.

[iluvtennis]

14. Sending hugs.

[Tanuki]

15. I sincerely hope your medical providers can find solutions

that will preserve and improve your vision. No wonder you're feeling stressed. I'm wondering if your state Office for Disabilities might have some suggestions for resources/adaptive technologies that could help you compensate for the problems you're describing, and generally improve your quality of life, while you're searching for answers?

[Marthe48]

79. The Ohio Low Vision Agency were immensely helpful

after the problem in 2000. Their doctor diagnosed the double vision I was experiencing, and got me prescription glasses with prisms, and most important helped me heal after a shattering experience.

Great idea, Tanuki!

[Bobstandard]

16. Can we find a patient advocate for LuckyCharm?

Someone local. Someone with relevant experience. Someone who can arrange for LC to have copies of all the Physicians Notes? Someone to work the refs on behalf of LC?

Stories like this piss me off. It ain’t right.

(I’m pulling for you LC)

[niyad]

26. I think that is a very important suggestion.

[Chicagogrl1]

17. 🫂🫂🫂🫂🫂🫂

[debm55]

18. Sending hugs to you ,Lucky,

[Mr. Mustard 2023]

19. I'm so sorry you have to go through this. Aging is awful

and I wish you all the best for you and your family. Best wishes friend.

[Buddyzbuddy]

20. I'm sorry you're going through this, LuckyCharms.

I wish I had something more constructive for you.

[greatauntoftriplets]

21. Sending you positive vibes.

I hope that one of those doctors figures out what's going on.

[stage left]

22. I'm with whoever said

get your doctors to explain exactly what's going on with your eyes in regular English. You deserve to know. And I've heard that a burden shared is a burden halved. I'll bet your wife is stronger than you think. Most of us are.

[blue-wave]

23. I wish I had the cure for you

I hope your doctor can help the situation. Stay strong!!

[Joinfortmill]

24. I have AMD, the wet form in my left eye for which I receive injections

I think the Eylea may not be working well in your case. This is what happened to me and finally, my insurance approved another medication, which has been working.

I realize these docs are very busy, but try to pin them down for the five minutes it would take to speak to you. If not, if possible change docs. Keep us inforned.

[JoseBalow]

25. Your friends here care about you, amigo

I hope that helps you feel better.

[LoisB]

27. Oh my goodness! I certainly hope everything is figured out and worked out.

[markie]

28. We hear you

[kozar]

29. Uhm,

You took Xanax and THC? And you're confused?
Uhmm. There's your answer,

[LuckyCharms]

30. Uhm, who said I was confused?

Maybe you're the one who is confused, Dr. kozar.

Xanax one day, pot gummies two days, Xanax the following day. Xanax...one day on, two days off.

And the dose of Xanax that I take is one third the daily prescribed dose.

Also, Dr. kozar...Xanax is addictive and a respiratory depressant. Because of that, I am careful with it. THC is not a respiratory depressant. I am not going to hurt myself by this method. The doctor who prescribed the Xanax is aware of how I take them, and has no problem with it.

I didn't need to read this comment, kozar, and I would appreciate it if you kept this fucking nastiness out of my thread.

Maybe you should try some medication to keep your random negativity contained.

Or, maybe you can apologize for externalizing your angst onto others...like you do every two or three days.

Capiche, Mio amico?

[kozar]

34. Ok you're freaking out,

I was trying to be kind.
And I just had a stroke,,
.wanna cyber fight? I've been dead 3 times,
I don't need to be the comedian on this website, to feel good about myself

[LuckyCharms]

35. Ok kozar...

I've had two strokes, and I don't attack people in here every other day.

Fuck off.

[LuckyCharms]

38. Bye now.

[Kali]

53. fuck you troll

people here gave you so much support FOR YEARS, including the owners/admins and you still come here and shit on people. I sure hope your chances here are finished with this one. fuck off.

[LuckyCharms]

57. !!!

There's hundreds of people here who come here for support when they really can't get it in real life for one reason or another.

We don't have to type our issues in here...but we do. And the support is tremendous.

Usually.

And then one or two people get a fucking bug up their ass and come in and make you feel worse.

And it's wrong.

It's a pet peeve of mine.

And when it's consistent, I'll speak up about it. I feel like a prick doing so, but Jesus Christ, that is not what this website should be about.

Some people don't realize how much that can ruin your day. You're on the head of a pin as it is, and you get up the courage to post about it, and then someone insults you instead of just reading the thread and moving on.

I'll tell you one thing, and this may ruffle some feathers here with some people...if I were in a mental state where I found myself attacking DUers every few days, I'd stay the hell off of the site because there is not a soul in here who needs that shit.

And unless my mind were totally gone, I think I would recognize when i was being a complete prick to people consistently. That's my opinion, and i know that not everyone is going to like it.

I think people should understand that EVERYONE IN HERE is having some kind of problem, and we need to be kind. Or at least, be kind somewhat consistently.

Thank you, Kali.

[Figarosmom]

31. Sorry about all the anxiety.

Think maybe it's time to get second opinions? And stop hurting yourself, please. Working yourself into a frenzy does you no good.

I worry about only having one good eye too. But for now I can't worry myself about it or I shutdown. Not about to waste time I've got left on earth.

[Niagara]

32. I don't blame you for freaking out or venting

We rely on our eyesight to get us through our independence.

I hope that one of your eye doctors can figure out what the hell is happening...and soon!

Big hugs to you, Lucky!

[Bmoboy]

33. One eye blind myself

Retinal detachment in left eye. Four surgeries followed by gradual deterioration of vision and now pretty much blind. Now right eye floaters increasing.

I can identify with your fear.

I also don't talk about it with my wife.

She has her own health fears.

Enjoy what you can see while you can see.

[Ilsa]

36. That's a huge load of stress. So much

going on with your eyes.
I hope all of the docs are communicating with each, and I hope they are all reading each other's notes.

Give yourself a timeout from anything that stresses you, and sometimes that might mean DU.

[Ms. Toad]

39. Several of those things are related to diabetes.

I'd look for a specialist who deals not with retina v. eye, etc., but one who specializes in ocular complications of diabetes (regardless of what part of the eye is involved).

Take someone with you - it doesn't have to be anyone paid, or trained - but it should be someone you trust who will recognize when the doctor is over your head, or not taking time, who will speak up an insist the doctor explain more clearly, more slowly, and in layman's terms. They should also be decent at taking notes, because when you're anxious it is hard to recognize when you need to stop and ask questions, to remember questions about something the doctor said a minute or two earlier, etc.

Finally - some eye complications from diabetes can be slowed or reversed if your blood glucose is lower and more consistent. I don't know that yours From an earlier post, I know you don't use a pump - and have had at least one wild swing. Do you at least use a CGM, so you can catch and treat swings earlier? My spouse has an A1C that is 7.1, not horrendous, but she swings daily from 60 - 400 and it's impacting her vision (no diabetes diagnosis other than cataracts yet - but she's close to her second cataract surgery because her wild swings seem to have dramatically sped up how long she benefitted from the first). She's finally on a CGM (and insulin), and is getting more stable.

[LuckyCharms]

42. My best a1C recently has been 6.8...

I'm having pretty good control. CGM and multiple daily injections.

I understand what you are saying about the wild swings. If I get above 290, I'm extra vigilant about corrections, so I am rarely in the 300s, except when I'm Prednisone.

My problem is, and you probably know about this...after years, sometimes when your control is TOO tight, it affects your eyes then too! Moreso than if I run high 200s for some period.

I appreciate your advice. This stuff is all too much for me sometimes...it's been 31 years and I have big time diabetic burnout.

[Ms. Toad]

68. It's not clear to me whether the impact of tight control on vision is because of the insulin -

or the control itself. All the information links the two (tight control + medical intervention causes the harm).

I know it's less common for T1, but I have friends with T1 who use a lot less insulin by limiting the carbs they eat. If you get a doctor who will actually stop and listen to you and answer questions you might want to explore what it is that causes the damage (long term tight control - OR - the insulin used to achieve it). Insulin is a miracle drug - but since we're never as good at mimicking how the body creates/uses insulin as our bodies are, it is both a blessing and a curse. It's worth asking whether it is the control itself - or using insulin to achieve the control. If it's the insulin - you might explore trying to eat fewer carbs to minimize the swings. (My spouse (T2 for about 30 years) is swinging wildly - 55 to over 400 in 12 hours, and I see how it impacts her vision, cognitive function, and memory. Because she's new to insulin, we have a CGM for the first time. Until now we didn't know whether she was just hanging out all day above 200, or swinging wildly (generally harder on her body than a relatively stable blood glucose))

Good Luck!

[LuckyCharms]

69. You always post great helpful advice. Thanks so much.

And my best wishes to your spouse...and to you!

[mountain grammy]

40. All the best to you Lucky and just one thing

Please reconsider telling your wife. She already knows something's going on don't you think? Don't let her sit there and just worry.

Whatever you do is right for you. Please get better.

[LuckyCharms]

41. Oh she knows about it, mountain grammy...

I just don't speak up about it too much.

She'll see that I'm distressed, and ask me what's wrong, and I'll just tell her my eyes are bothering me. She has her own health problems, and I need to support her.

She goes with me to the eye docs, and she's really good trying to glean out information, but they are in just too much of a hurry. They have about 25 people sitting in the huge waiting room...

[mountain grammy]

44. Good.. So glad to see this.

being left in the dark is the worst.. glad you're supportng each other and hope to see a good update soon.

[Evolve Dammit]

43. I can relate LC. Having issues as well and my eye doc retiring. Cataracts maybe.Blurry.

[richdj25]

46. Wishing you all the best

In nailing down what's going on with the vision. Please keep us up to date on your progress.

[Katinfl]

47. I know where you live and perhaps specialists are somewhat limited.

Have you looked into Upstate Medical Center in Syracuse? My SIL could get no real answers for her neurological condition and had to wait several months for appointments. She went to Upstate and got answers and treatment plans. Just a suggestion. Good luck in whatever you decide. Take care.

[LuckyCharms]

49. That might be the next step...

I had cataract surgery on both eyes in 2025.

Everything turned to shit after that. Retinal bleeds, etc.

I was pretty good before the surgery, with the exception of optic nerve edema in my right eye.

Nothing has been right since the surgeries.

Right now, I see a regional retina group that has offices all over NYS, even in Syracuse, about 80 minutes away. The same doctors in this group travel to all of their locations.

[Kali]

54. sorry you are suffering

and sorry for the minor irritation of that jackass up thread.

you will get through this, I know you will. love you, guy. send a pm if want contact info.

[LuckyCharms]

55. Thanks so much, Kali.

I'll be ok I think.

[rampartd]

56. diabetes is sure a suspect in degenerative eye things.

but i'm sure you know to keep the a1c down. and the weight

stay on top of this

[Scrivener7]

58. LuckyCharms, I'm so sorry. I can't imagine. You are in my thoughts, and I'm glad

we can all come here for support, but are you sure you don't want to tell your real life support people? You say they depend on you. Maybe you can lean on them this time.

I am praying this clears up for you.

[Diamond_Dog]

59. I'm so sorry you're going through this, Lucky.

Our medical care system leaves a lot to be desired, for sure. I wish I had something helpful to say other than I hope this will all be taken care of soon. It must be so frightening.

[True Dough]

60. Your typing is really good for someone with bad floaters!

I think you can fight through anything, Lucky!

[LuckyCharms]

61. asd jb kkarfty!!!!!111!!!

[True Dough]

62. Hold on!

I'm running that through my decoder ring!

[Kali]

63. !!!

[LuckyCharms]

64. loma...

er...

lmfoa

er....

loll....

er....

Jesus, I gotta laugh about it...

[highplainsdem]

65. I'm so sorry, LC. Sending hugs and healing vibes. My sister's dealing with multiple eye problems, too,

and it's been so stressful for her. I hope you can find more helpful doctors, or at least can get more time and attention from your current doctors.

[LuckyCharms]

67. Thanks so much highplainsdem...

and I hope your sister's symptoms are manageable.

[some_of_us_are_sane]

78. Hugs and good strong wishes

for the best outcomes for you. You unload all you want, pal. That's what friends do. We're your human backstops!

[appalachiablue]

80. I hope the current doctors or maybe a new one, can sort things out for you. I understand the anxiety

completely. Deep breathing is sometimes helpful at reducing anxiety, temporarily.

As others suggested, maybe look into another practitioner with expertise in the matters you're facing, although nothing is easy with the complex American health service business.

Years ago I worked at a small organization focused on helping people with low vision. Some had the conditions you mention. We provided information and resources on eye conditions, low vision aids like magnifiers and large print, and support groups. Take care and all the best.

[Bayard]

81. Good vibes, good wishes, and big hugs to you, Lucky

Please keep us posted.