An interview with Lauren @cortisol.queen

Hello everyone! It’s Fullabilities here. My name is Hania and today we have an honour to be joined by Lauren Michelle. She’s sharing her story on Instagram and today we’re going to talk about chronic illness and disability. If you want to join Lauren’s journey, you can do that on her Instagram, all the links you need are going to be in the description box. If you want to learn about us as well, again, everything will be down below. 

Let’s get to the questions.

Lauren, could you introduce yourself and tell us a bit about your chronic illnesses.


Hi, I’m Lauren Michelle, Instagram handle @cortisol.queen, and I am here to tell you a little bit about two of my illnesses. 

So, I have two acute chronic illnesses, one of which is Mast Cell Disease. Basically, I am allergic to life, put me in a bottle, please, and I use a lot of EpiPens. The other one is Addison’s disease. No, I’m not a dog. Yes, people have Addison’s too. Everyone with Addison’s is different and we’ve come  very far.


How do they impact your everyday life?


Well, currently I am homebound, because if I go outside… The last time I had anaphylaxis someone was mowing the grass and I was wearing a n95 mask trying to go to the doctor’s appointment and I wasn’t even there for allergy, obviously, but trying to give me my IV benadryl (medication) and I needed a new EpiPen. I was missing a lot. Adrenal crisis, I’ve normalised it so much  because I had so many because I’m in adrenal failure. I make no cortisol but I’ve had to drop out of a lot of classes, not completely drop out of school, I only had a few credits left to get my biochemistry degree, but every single day I had to be on a lookout for “Oh, man I have an anaphylaxis to this this and this” or “Oh, I’m brown or I feel like I’m gonna pass out, I’m dizzy and going into shock. Someone give me an emergency shot for the Addison’s!”


What’s something you’d like to tell people about living with a disability?


I don’t really like to generalise, cause we’re all different, but… believe us. Believe our symptoms, believe that we need rest more than other people. Believe those of us who have POTS and have to take salt tabs daily. Believe me when I say I’m wearing a mask because people came and I can’t breathe very well with the stuff they use, even though it’s a detergent.


In your opinion, what problems affecting people with disabilities are the most difficult?


Hm, what problems touching people with disabilities are the most difficult… It’s our accommodations. A lot of people say that I have special privileges. They’re not privileges, they’re just even in a playing field. And a lot of people don’t see it that way. So, that’s my biggest problem. That's me disabled, it could be completely different for another person.


What does your daily routine look like?


My daily routine is a full time job. I wake up between 3 and 5, I make sure that my Total Parenteral Nutrition (TPN) is running, because of the Mast Cells and the Addison’s, and the drugs I have to take, I have malabsorption of the gut and the small intestine doesn’t work, thankfully, my stomach works, but we had to go straight to TPN. And I wake up, do all of that, take a lot of medications just to block my Mast Cells from degranulating. 

Degranulating is just *shows with her hands* this is your cell… degranulating!... puff. Check my pump for cortisol, make sure it’s running.  Make sure I take medication to keep my blood pressure up. Then I get to enjoy a cup of coffee and we always try to feed me a little bit even though I’m about 90% dependent on my TPN currently.  Lunchtime I take, actually whenever I want to have food, I have to take chlorine sodium, so my body tolerates it and it has to be 30 minutes before meal. So I do that all day. Lunch is usually , right now it’s something liquid, we mix the safe food until it’s not safe. We just try everything. Between 4 and 6 I have all the meds to do again so I take all those medications, try again to eat something, shower, which means covering this port needle, this takes some time, and then taking my night medications. Sometimes I take a nap, because it’s very hard for me to sleep at night because I could easily stop breathing on my own. I have a service dog, who knows how to alert that. My body naturally wakes up every three to four hours, cause that’s about when you can take more medication to stop the reaction  or you need to check on the pump. So, that is my day.


What bothers you the most in other people's behaviours? 


I think what bothers me the most in other people’s behaviour towards me is the disbelief that I have a problem. I used to pass as a person who doesn’t have a disability, I don’t look like that, it’s called an invisible illness. This is a huge problem, because they act like I could do everything, while I’m putting up an act and really I’m exhausted and I am burnt out. I had to go to hospital a lot of the time not because of people's opinions, but it’s just… The behaviour towards me is very weird when they find out that I’m sick, because I don’t look sick. People don’t understand that, like, I used to be a ballerina, I was doing it everyday, I was eating healthy food, I was at the top of my physical fitness. Yeah, and I woke up one morning permanently disabled. 


In your opinion, what is something people should know about disabilities and chronic illnesses?


Personally… 1) you can’t always see it, 2) no one owes you their diagnosis and why they’re doing certain things and 3) every disease and chronic illness is different. I have two friends who have lupus, but their experience is completely different to one another. Disease is very individualised and you should  try to refrain from giving unsolicited medical advice:) 


How has living with a disability affected your life?


Well, 1) I had to move home, because I can’t take care of myself, 2) now I have a service dog named Nova, who helps me a lot, but is still in training, 3) dropping out of the classes for school, taking online classes to complete a science degree. It’s impacted my life in the ways I didn’t even know it could. I have a walker, because sometimes I can’t walk very well. I understand why people say “I have fallen and cannot get up” because I’ve literally fallen and I’m not able to get up. I’ve lost a lot of muscle tone and I can’t eat. I’m on TPN. The list goes on and on.. Illness has affected everyone differently depending on severity and mine is severe.


Is there something your medical journey has taught you, and if so, what is it?


My medical journey has taught me that the most important thing in my life is human kindness, other people, my family… Personally, I am a Christian, maybe it’s not that common with people with chronic illnesses but it’s taught me that my relationship with God is worth trying and no matter what’s happening to me, I can get through anything and just never give up. And sometimes it’s day to day, hour to hour and sometimes it’s minutes to minutes. And it’s okay to be that way, even though it’s terrifying, it’s okay. You don’t choose to be chronically ill. 


What is something you want to achieve by sharing your story on social media?


I just want to share that invisible illnesses exist. Mast Cell Disease is quite known but Addison’s is less common. I have a cortisol pump and people think I’m just type I diabetic but my pump is full of cortisol.  Here he is. I got a custom case because I don’t want to drop it, it’s very expensive.I’m in adrenal failure so my body doesn’t make any of its stuff so I have this pump to do it for me and it feels like I’m holding my adrenal gland in my hands.


Do you know any good disability representation in the entertainment industry?


I don’t think there’s someone with my disease. But when it comes to Lupus then I think Selena Gomez is a great representation in the entertainment industry, because I don’t think a lot of people know that she has lupus . She ahs spoken up about it which is crazy and very brave.


What would you recommend for people wanting to learn more about your condition or disabilities as a whole?


You should check out The Mast Cell Disease Society that is working to find a cure. You’ll find the link in the description box. They talk about all the mast cells disease. Another one is Mast Attack and it’s a website run by scientists. If you're close to someone with chronic illness or disability just respectfully ask them. Don’t make assumptions though.

  

Okay, that’s all the questions we have for you today. Thank you so much for sharing your story with us. We wish you all the best and I hope we’ll see each other soon. Bye!


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