00:01When I was 20 years old and I first got admitted to the hospital,
00:05I overheard my doctors telling my parents that I had two months to live.
00:10The average lifespan for someone with Takayasu's is anywhere from 10 to 15 years.
00:18And I've had it for nine years.
00:49All my symptoms started hitting me at once. I had a fever that wouldn't go down. I had lost my
00:54voice. I had really bad night sweats.
00:57One day I was at the store and I was reaching the shelf.
01:02Midway while I was reaching, I couldn't see my hand and all of a sudden everything went black.
01:10I finally saw the doctor. He told me I might have COPD, which is a chronic breathing disease that a
01:17lot of old men who are smokers have.
01:20And I'm none of those things, so it didn't make sense.
01:25I went to another doctor and he told me I just must have heavy periods.
01:31A lot of male doctors have said things that were very gender specific.
01:37They think I must have not been that sick because I had time to do my hair and put my
01:41makeup on.
01:43I've been told I'm demanding, I can be a diva.
01:48These words that are just associated, I think, with women who demand certain things.
02:08Waking up every morning has been a challenge. I will mentally wake up and be awake for maybe two hours
02:14before I'm able to actually be mobile.
02:19Whatever we assume an 87 year old woman feels like that's how I feel.
02:26This is what happens when you cannot hide what is happening on the inside of your body.
02:32Feeling isolated with a chronic illness is a horrible feeling.
02:38There's so little research on what I have.
02:41I don't think there's a cure anytime soon.
02:46This is already what I have just in a month and a half of bills.
02:51Based on my prescriptions, my infusion that I get, imaging, CT scans, because my disease affects my heart, my brain,
03:03my eyes.
03:04You can feel like you're drowning in medical bills.
03:11One of the first things that really stuck out to me at 20 years old was that I'm not able
03:16to bear children.
03:18And that's something that I still think about because I want children so badly.
03:24My legacy now has shifted through my writing and through whatever I create and leave behind.
03:33So this journal in particular is from 2001.
03:37I remember I used to write a lot of short stories with female characters who would be kicking ass basically.
03:45And I've always kind of envisioned myself as that person and getting diagnosed really put things into perspective.
03:53Like, oh, you're going to fight for your life, literally, like the rest of your life every single day.
04:02When I was first diagnosed, I dealt with a lot of people who didn't believe that I was really sick.
04:10Just based on my appearance, based on my demeanor.
04:16Don't doubt yourself. If you feel something, you know better than anyone else knows.
04:24I have come to terms with the idea of death.
04:27That's something that we're all going to be faced with one day.
04:30But because of the disease that I have, I've had to face it sooner.
04:36My heart beats really irregularly.
04:39That's my literal reminder every second of the day that I'm still alive.
04:45I don't live around the fear of death anymore.
04:50So, I feel like I'm going to live a long life.
Comments