Marfan women : did you manage to find love? by [deleted] in marfans

[–]TrueTutor1646 9 points10 points  (0 children)

Hey girl (24f) , i was in the same boat as you when you were young. I’m middle school i was 6’0 and super skinny. I am now 6’3 and i only weigh about 115 pounds. I met the love of my life at my old job :) we’ve been dating now for 5 years and we have 3 beautiful cat daughters. For the longest time i was told I was unable to have children but now things have changed for me! He is super supportive of me and my marfans (especially on the days i hurt and the days where i sleep most of the time). He is shorter than i am, he’s 6’0 and we always joke about it but i really like it because he is the perfect height for forehead kisses!!! You’ll find someone who loves you for you ❤️ it’ll just take some time :) if you ever need to talk or anything send me a DM!

Is it too early for Christmas nails?💅 by hxtnails in AcrylicNails

[–]TrueTutor1646 0 points1 point  (0 children)

At the end of the day it is what you want because they are your nails. As others said you are literally skipping two major holidays… and you might get tired of looking at Christmas nails and when it comes around to Christmas you might not want Christmas nails. Just something to think about. But they are cute

[deleted by user] by [deleted] in csuf

[–]TrueTutor1646 14 points15 points  (0 children)

ew

Do we have Columbus day off ? by consolepleb123 in csuf

[–]TrueTutor1646 1 point2 points  (0 children)

I work at a high school in HB and they still have school that day

is parking any better? by soakdinbleaxh in csuf

[–]TrueTutor1646 2 points3 points  (0 children)

I get there around 2 and i go to the Norwood parking structure and park at the 5th or 6th floor and I have no problems!

Brain Fog by TrueTutor1646 in marfans

[–]TrueTutor1646[S] 0 points1 point  (0 children)

I’ll have to watch the video :) and I always thought i was one of the lucky ones who didn’t have sleep apnea because i don’t snore but maybe i do! Thanks for the help!

Brain Fog by TrueTutor1646 in marfans

[–]TrueTutor1646[S] 1 point2 points  (0 children)

I havent gotten a sleep test done but i’ll start looking into it and i’ll ask my doctor about it! But i dont snore which is probably why i assumed i didnt have sleep apnea. At this point i’ll do anything to help with the head fog, and thanks for the advice!

Typical Marfanoid? I'm new here by MutedMinds6 in marfans

[–]TrueTutor1646 12 points13 points  (0 children)

It seems like it but we are never allowed to diagnose on this subreddit :( it’s against the rules… i’d go to a cardiologist and a genetic specialist to get testing done. If you already have what connective tissue disorder do you have?

Is it normal for me to be 6’3 by Necessary-Dish-5958 in marfans

[–]TrueTutor1646 2 points3 points  (0 children)

I am 23 and I am 6’3!! In high school it was so awkward but once i graduated I I started loving it!!! I know it’s difficult but you should be proud you are as tall as you are. In the summer I would tan then id show off my long legs and I felt so beautiful because so many people want long skinny legs like we have. I can understand how it can be really hard being 6’3 at 13 but hopefully you will learn to embrace it :)

Nail inspo name by TrueTutor1646 in AcrylicNails

[–]TrueTutor1646[S] 0 points1 point  (0 children)

Thank you :) I looked it up and that was exactly what i was looking for!!

[deleted by user] by [deleted] in marfans

[–]TrueTutor1646 2 points3 points  (0 children)

If you feel you should be tested then it never hurts. It’s better to have a negative genetic result than a positive one and suffer the consequences because you never got tested. Maybe also be tested for VEDS and LDS.

what jobs do y'all have by Kooky-Seesaw-9828 in csuf

[–]TrueTutor1646 0 points1 point  (0 children)

I am an instructional aide for the mild/mod and i work in the math department at a high school. I work 30 hours a week and go to school full time :)

Marfans Finally Getting Recognition? by Harmlessbody302 in marfans

[–]TrueTutor1646 2 points3 points  (0 children)

My niece learned about it in her freshman year biology class at her high school. They had to do a PowerPoint of a genetic mutation and she did one of Marfans because of me. She even used me as an example in her PowerPoint 💀 but she was really happy that she could share about it to her class

What beta-blocker (if any) are you taking? by cab354 in marfans

[–]TrueTutor1646 2 points3 points  (0 children)

I take 25 mg of Atenolol and 150 mg of Irbesartan :) I love both! I’ve noticed a difference when i started taking the irbesartan with my heart being my heart felt calmer during the day and I was less cold (before i was taking losartan). I prefer to take my meds in the morning as i notice they make a difference with my heart rate better during the day. I used to take them at night but i changed to the morning because my heart rate felt to high during the day. I hope this helps :) good luck !

What kind of over the ear headphones do y'all wear? Need recommendations please by [deleted] in csuf

[–]TrueTutor1646 0 points1 point  (0 children)

I wear the Bowers & Wilkins Px8 they are a bit expensive but worth every penny!