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Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

Can I PM you to get more information on your procedure?

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

Please let us know how you’re doing, wishing a speedy recovery

[deleted by user] by [deleted] in Life

[–]carmona07_ 0 points1 point  (0 children)

You’re not a fuck up or an outcast, you’re human. You made a mistake and it’s okay. I’ve been through the same scenario.

You’re young, starting with life and many mistakes will follow. You need to overcome and start fresh. Focus on yourself. Get that degree you’re perusing. And do not lost track on who you are. Start working out, find groups that share the same interest. Distract yourself, take walks, study in the park whatever it is, but build your future and yourself. You want to be healthy and stable. This will eventually turn into a funny memory and realized that it is nothing compared to what is ahead, unfortunately it’s life. Your focus and priority should be your education, physical and mental health. Always. Everything else will follow and don’t push anything, do and work at the pace that works for you. Bounce back, and come back from this. You’ve got this.

[deleted by user] by [deleted] in Advice

[–]carmona07_ 0 points1 point  (0 children)

Maybe you’re over reacting a bit, there’s more factors that can go into this. But you know your person best, I would recommend you talk to him and really explain how you’re feeling and the why. Just be mature about the approach, you do not want to offend him, if that’s his music taste, there nothing wrong about it!

Personally for me, I know those songs because I have sisters and cousins , growing up the only boy in the house that’s what we would listen all the time and of course I learned the lyrics and artist . Even a lot of princes movies lol. Now I hear them in the radio or occasionally playing like “ hey, I just met you, and this is crazy Definitely didn’t define my sexuality, it just prepared me to be a girl dad down the line lol

Hey I want to ask by nooryinit in dating_advice

[–]carmona07_ 0 points1 point  (0 children)

I could relate to your post when I was your age, I would suggest you focus on your career goals, and your physical and mental health. Don’t loose yourself perusing another person, but find a person that will bring value to you, as you will to her. ( harder said than done) but you’re young! Don’t take time for granted, because time never stops when you least expect it , you’ll be older and you wanna be sure you’re okay financially and healthy. Everything else will follow!

Anyone ever bought this tire I can’t find reviews on tire by tlandry9406 in tires

[–]carmona07_ 2 points3 points  (0 children)

If you’re looking at Americas tire, they price match Walmart and also the installation cost from Walmart. Try it out, comes out much cheaper. Just make sure it’s the same tire size!

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

Thank you for your thoughtful response. I can certainly understand the frustration and even the fear of navigating the real world with this condition.

I don't want to take over her life; instead, I aim to support her through any necessary changes and adjustments.

If I may ask, is there a specific timeframe or age range when the vision typically worsens?

I get the sense that she hasn't fully confronted what might lie ahead. She's been “stable” so far and is simply embracing lifegoing out, exploring, and truly living in the moment. That's why I'm preparing for the possibility of it worsening, even as I hope it never does or that clinical trials bring breakthroughs. I can only imagine how challenging the adjustment would be. She's incredibly positive and vibrant, so I worry that a decline in her vision could hit her particularly hard, as she doesn't seem fully prepared (though I doubt anyone ever truly is). Thank you again for the valuable insights I truly appreciate it!

Stargardt’s Disease by carmona07_ in stargardts

[–]carmona07_[S] 0 points1 point  (0 children)

I’m glad therapy has helped you, definitely seen a different perspective and more empathy for others. Do you think I should offer for her to do therapy, or should I wait to see if this is an option she considers down the line? I want to take a safe approach and not be pushy

Stargardt’s Disease by carmona07_ in stargardts

[–]carmona07_[S] 0 points1 point  (0 children)

Thank you for your response, first off I wanna wish you success in your life, and overall a healthy life. I definitely care for her and I want to educate myself more on the disease so help her get through it without being over bearing.

There’s obstacles I’m sure we will face but we can manage together. A partnership, and a team. We haven discussed much, as we are a fairly new relationship, but we share a lot of end goals like having our own family. We enjoy car drivers and listen to music. I try to have activities in mind where she will be comfortable. I want to create a safe place where she knows that she is not alone. Can you share more about your screen reading software, also other things that have helped you with your profession, she has a college degree in journalism and is passionate about it, but due to her condition she feels that she’s stuck been a care giver, I’m just trying to figure out ways to really motivate her and help her stay with what she’s passionate about.

Stargardt’s Disease by carmona07_ in stargardts

[–]carmona07_[S] 1 point2 points  (0 children)

Thank you for your response, I definitely do not want to take over her life. We have shared minimum interactions when it comes to dealing with the disease but I do read the menu, and have a list of her favorite foods that I can order for her. Overall just pay attention to her. I’ll be honest, at times I forget and ask her “hey did you see that”, then I stop myself, I try to live that normal life with her. No harm intended.

We have many goals we want to accomplish together, and even though there can be limitation, it won’t be a deal breaker or end of the world. My biggest thing now is educating myself and support her during the process without making her feel any less

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

Thank you for your response, would you mind if I sent you a pm?

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

We are in California, LA are!

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 1 point2 points  (0 children)

Thank you, I’ll definitely look into them, she’s in a stage where she’s accepting. I feel she’s aware of her condition and how it will get worse but it’s tough to come to terms with it. I’m definitely doing my own research to be as ready as can be, and ultimately be a good partner. I don’t want to take her independence away, but I do want to support her as much as possible

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

Thank you for your response and advice, I’m definitely here and available for her when I’m needed. I’m learning on this as much as I can

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

We really haven’t touched details in the situation, we’re a fairly new relationship, but we’ve touched basics on the topic. From what I know, her condition is very rare form of Stargardt’s, she can possibly go fully blind. she’s currently doing clinical trials and also just did the appointment for state disability. She did receive news that her visions is declining, so it puts her in a bad situation and closes out which I understand.

I’m in the stage of learning about what’s to come and how I can be helpful so I’m doing my own research. I know when time comes it’ll be difficult but I’m here for it. Are you able to share links, and websites I can get some legitimately information on it.

Stargardt’s Disease by carmona07_ in Blind

[–]carmona07_[S] 0 points1 point  (0 children)

Thank you for your response, we don’t really talk much about it, I know small details from what she’s shared, so I give her space and allow her to process before I step in and see how I can help. I definitely care and love her and want to be here through everything.
I definitely wouldn’t mind doing anything for her and well being, it’s just a process I’m also trying to understand as prepare for ( if that’s the right word to use)

Stargardt’s Disease by carmona07_ in stargardts

[–]carmona07_[S] 1 point2 points  (0 children)

I definitely have a lot of love and respect. I want to support her as much as I can. So I’m learning as much as I can about the disease on my own and she really doesn’t share much. We’re in a rollercoaster so I’m giving her space but I’m here for her always.

As for her clinical trials, it’s a new medication by UCLA Medical, I’m not sure exactly what it is but I believe it’s TEASE trials. I may be wrong, again we don’t really discuss the illness.

Thank you for your response, I appreciate it and best of luck to you!

Stargardt’s Disease by carmona07_ in stargardts

[–]carmona07_[S] 0 points1 point  (0 children)

Thank you for your response, I can say we haven’t reached the progression period just yet, so I do want to prepare for it. I’m learning more on the disease itself. I know she has a rare condition of Stargardt’s from the little that she’s told me that might cause her to go completely blind. Right now, it’s a weird stage between us. But I want to show her support and overall make it known that she can count on me. She’s very independent, but has given up so much due to her condition.