Originally uploaded: August 20th, 2023
Youtube Link: https://youtu.be/DkOwu4zIxYQ
https://linktr.ee/aleshapeterson
*I'm behind on Dailymotion
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Filename: How to advocate for yourself as a patient.mp4
Original Youtube Description:
#1. I wasn't believed for years.
#2. I do have a great team of doctors now, but it took a long time.
#2a. A lot of people did say it was all in my head when I was younger when I was in a lot of pain. Keep going to doctors until you are believed.
#3. People still judge. I have procedures/shots/blood draws more than I like to admit to, and some folks make judgement calls. One of the things my docs told me is to eliminate stressful people, situations, jobs out of my life. Now that I've done that.....people make judgement calls. No matter how you are, people will talk. Let them talk. I let the advice go in one ear out the other nowadays.
#3a. I'm actually losing my hearing, so I may not hear your advice at all.
#4. I do look skinny in some of my videos. Sometimes, it's the angle I shoot these from. FYI. I have several chronic illnesses where I don't feel that great, made me lose weight and not . Don't judge folks with chronic illnesses and invisible illnesses.
Connect with me: https://linktr.ee/aleshapeterson
Spotify: https://open.spotify.com/artist/3yGNnFm83unJ09DAjEd2dL
Youtube Link: https://youtu.be/DkOwu4zIxYQ
https://linktr.ee/aleshapeterson
*I'm behind on Dailymotion
Filename: N/A
Filename: How to advocate for yourself as a patient.mp4
Original Youtube Description:
#1. I wasn't believed for years.
#2. I do have a great team of doctors now, but it took a long time.
#2a. A lot of people did say it was all in my head when I was younger when I was in a lot of pain. Keep going to doctors until you are believed.
#3. People still judge. I have procedures/shots/blood draws more than I like to admit to, and some folks make judgement calls. One of the things my docs told me is to eliminate stressful people, situations, jobs out of my life. Now that I've done that.....people make judgement calls. No matter how you are, people will talk. Let them talk. I let the advice go in one ear out the other nowadays.
#3a. I'm actually losing my hearing, so I may not hear your advice at all.
#4. I do look skinny in some of my videos. Sometimes, it's the angle I shoot these from. FYI. I have several chronic illnesses where I don't feel that great, made me lose weight and not . Don't judge folks with chronic illnesses and invisible illnesses.
Connect with me: https://linktr.ee/aleshapeterson
Spotify: https://open.spotify.com/artist/3yGNnFm83unJ09DAjEd2dL
Category
🛠️
LifestyleTranscript
00:00Hi! My name is Alisha and if this is your first time visiting my channel, welcome!
00:19So for this video, it is inspired by Jenna Reese and how to advocate for yourself as a patient.
00:30I've been having chronic illnesses for many, many years and I've only been saying things
00:57about it recently because I figured, hey, at the 17 year mark, it's safe for me to start
01:02speaking on what's been going on with me because I'm not one of those people that like to get
01:07on Facebook and, hey, I feel sick and I threw up six times and I had to go in the hospital
01:12and I had to have this treatment or that surgery or this or that or this or that. I kind of
01:17just keep it to myself. And when I saw Daily Blast Live and saw Jenna Reese, I'm like, hmm,
01:28I want to make my own video because I think it was really cool. And sometimes when you're
01:33young like me, they're like, oh, there's nothing wrong with you. You look young. No, I have
01:37stuff going on. I just don't always talk about it. Hey, y'all, I'm going to go ahead and edit
01:42this part in. I probably should have said for the most part, I keep it quiet because I do.
01:50But every once in a while, I do run it by a trusted group of people because sometimes some
01:56of these surgeries have me feeling some kind of way. Like I know for my last surgery, I only had
02:01two days to prepare. Car. Anyways, I only had two days to prepare and I had no content scheduled
02:14out. I was freaking. And so I was a little bit nervous about that. I do run it by trusted
02:21people every once in a while because as these illnesses progress, I'm not getting any younger
02:27right. And so as time goes on, I do want to let some trusted people know, hey, this is
02:31what's going on with me. So if something happens, at least somebody will know what what's going
02:37on. So just to keep that in mind, I probably should have said for the most part, I don't
02:44tell people sometimes every once in a while. I do a trusted people though. So there's here's
02:52some of her notes that she talked about in her little segment that I really relate to. Number
02:58one, being a reliable historian of your body. Like if you're experiencing pain when you're
03:05walking up the stairs or if day to day life makes you more tired, make sure you have notes
03:12on what you're feeling. Anywho, be specific about what patterns. Notice that your body is going
03:27through different things like what food sets you off. What makes it worse? Because when you're
03:34vague, it's hard to pinpoint what direction to go in. Let me repeat all that just in case
03:40because I saw a text. Be specific about patterns. Figure out what food sets you off. What food
03:48makes it worse? Because when you're vague, it's hard to pinpoint what direction to go in.
03:54So she also says in her interview that at first, she didn't have this type of fatigue before.
04:00But now, for many months, you're having it. So if you all of a sudden go from like really
04:06energetic and also you're tired a lot, that's something to jot down. And the more certain
04:15and sure of what you're feeling, the better the outcome. I know she said in her interview
04:20that if a patient or somebody is having some of the experiences that she had, she'll definitely
04:27advocate for that quicker. I think in my life, like if I have a friend, there's a lot of airplanes
04:33that goes on every time I've been filming lately. Just do a little fancy dance until it goes away.
04:53Anyway, how do you like the way you hear? The noise is gone. But anyhow, how do you like this?
04:58Okay, so anyways, in her case, she said that if a patient experiences some of the similar symptoms
05:08she has, she going to advocate for it quicker. I'm the same way. Like if you're experiencing
05:13something I've had, I'll just say, hey, is it endometriosis? Is it arthritis? Is it fibromyalgia?
05:19Is it lupus? What could it be? Because they won't know until they do the test or until they really like pinpoint what it is.
05:27So I think that's how I could be an advocate for friends and family and people. Like if they're
05:33experiencing similar things, hey, maybe have them check for this or have them check for that or have
05:37them check for this. Because for many years, like, but for many years I wasn't believed and I was told
05:45that it was in my head, you're full of shit, you know, you're young, sleep it off, suck it up,
05:51toughen up. And the worst part is just being on being in all that pain and not being believed.
05:57No worries, but we're just going to go with it.
06:01Going through all those pains and not being believed. I remember when I was 15, I had the worst pain I've ever had in my life.
06:13And I felt a really bad stabbing pain and I felt it for many years and just didn't say anything. And so what
06:21I've been doing is investing in more products and more foods that I think can make it better and more
06:27supplements. And there's no cure, but I've been doing all these different things and make it better.
06:32I've been doing all these things and I've been doing all these things and I've been doing all these things.
07:00There's no cures for these chronic illnesses. Like I said, I'm going to edit this part in too.
07:07I've even tried going vegan for 30, 60, and 90 days just to see what that does.
07:11Because I'm always trying to find all kinds of ways to improve my quality of life.
07:17And there's even times where I have to stop working out and I love working out. You know, I have a fitness channel.
07:39Like I have to like maintain my channel. I have to maintain my physique. You know, that's my goal.
07:44Like I love fitness. I love working out. I love challenging my body. So sometimes these chronic illnesses even interferes with that.
07:51So I'm always trying to find ways to improve my quality of life and maintain my fitness regimen.
07:59And so I'm like, shoot, let me try vegan. Let me try, you know, this for 30 days, 60 days, 90 days to see what that does.
08:06And trust me, I'm the biggest meat eater in the world. I love me some meat, but I've been trying a bunch of different things to see what that does.
08:16So this is note number two.
08:25Okay. So some personal advice that I'll share. I have an excellent team of doctors now, but I wasn't always believed.
08:33And for many, many years I was just dismissed and called stupid, crazy, delusional, idiot.
08:40And you just have to sometimes keep switching doctors until you find someone that believes you.
08:45And also I'll say too, you'll get a lot of family and friends judging you.
08:50Oh, you look good on the outside, but they have no idea what's going on on the inside.
08:54And you have to probably join a chronic illness community or some group or have a group of friends that really understand what's going on.
09:03Because you can lose friendships over this because when you live with chronic pain and chronic illnesses, you'll miss events.
09:12And sometimes this pain will come on unexpectedly. And it's definitely affecting my day to day life at times.
09:21There's times where I've had to miss stuff and people get angry, pissed off and take it personally.
09:27And number three, I guess like my next point is surround yourself with people that can understand.
09:37Anyways, I'm going to go ahead and bounce off of here because I need to get going.
09:43Thank you for watching. Bye!