My name is Aeilani(eye-law-knee), but you all can call me Lani.
I am so glad I joined this group, thank you all for the support and love.
I am new to this group, and have joined because I was diagnosed with MCTD last week. I got a blood clot in my leg that led to a pulminary embolism in my lung. Best part is, I got it right after my 21st birthday. Lol, happy birthday to me. The drs couldnt figure out exactly was was wrong with me till last week. I am glad we finally figured out whats going on with me, but now I'm terrified. I'm fucking scared. I was reading online that most people are expected to live about 10 years after they've been diagnosed, which is what braught me to this group. A lot of you said that wasn't true, and used yourselves as an example. That made me feel a lot better.. but... It didn't take mt fear away. I was never afraid of death before, and I think it was because I somewhat thought I was invisable - atleast for now, while I'm young. I've always thought that I was going to die from some sort of traggic accedent or crazy fall while hiking, or random crash.. never from a disease. So now that I've been diagnosed my depression has worsened and I honestly feel doomed.... I know I shouldn't give into this feeling, and that doing so will only make it worse, but hoenstly... I dont know how else to feel. Did you all feel this way too? I mean fuck... my dr said I can't sunbathe anymore, or go on long hikes... When I heard that i broke down... I just... I dont know.. I feel hopeless now, and I don't want to feel this way.
Thank you for letting me rant.
I feel like this group will help me a lot.
Just checking in here, been off for a long time-- basically, I mostly use a different computer, which remembers the password for this site, but I cannot remember it myself, and thus cannot use my primary computer.Muscle and joint pain, and fatigue, was worse over the summer, and I did have to scale back swimming and body boarding in September. I didn't do anything about it because I was too...
Hello everyone,Its been a while since I've logged on. I must say, this year has been one hell of a roller coaster, for myself and all of us. I hope the holidays aren't causing any flare ups.I am very scare at the moment. 3 of my doctors are concerned I have pulminary hypertention... I just turned 22, and I was diagnosed with MCTD right after my 21st birthday. Which means if I do have...