Meeting yourself at 32... Stephanie's story...

People come into your life in many different ways. I knew I would be opening my friendship circle once I was a member of the immune system suck club. One of the first people I really understood & felt they understood me was Stephanie. I think the first time we talked I interrupted her more than I’d like to admit but she was saying things I had felt for a very long time. Enjoy this amazing lady & the powerful message she shared with me. 

L: Well hello there newly found friend. 

S: Hello!! Shout out to Jennifer for the hookup. 

L: Let’s chat about the new world you & I have found ourselves in. 

S: Yes, please! It’s so refreshing to talk to someone who understands on a deeper level what you struggle with everyday.

L: You just turned 32 & yet you feel like you’re starting a whole new life - tell me why?

S: Yes, my life has completely turned upside down. Gone are the days of being spontaneous and carefree. Now, my days revolve around medications and taking steps to try and lessen the chance of a flare up. I take liquid medication four times a day and when I leave the house, I have to plan to bring the correct amounts with me. Vacations are incredibly hard. I can’t be too active or in the heat for too long. When the vacation is over, I usually need fluids and multiple days to recover.

The hardest part of having a chronic illness is learning to mourn the person I used to be. I still feel like I don’t recognize the person I see in the mirror. This is so common in the chronic illness community, but not talked about very often. Even after a year of therapy, I still have days where I have trouble accepting it.

L: Ugggggg…. That hurt my heart. You were the first person I talked to that mentioned mourning the person you used to be. I immediately understood what you meant. For me, it was the unknown. For 39yrs of my life I reacted to things a certain way & now it was all different. The sun/heat thing is an issue for me too & the first time I got sick after going outside for too long was a hard one to deal with. Not just for me, but for my family too. 

L: Your new life is based on recent medical diagnoses - talk to me about your journey.

S: I was diagnosed with Mast Cell Activation Syndrome in February 2019 and Ehlers-Danlos Syndrome (type 3) & POTS in June 2019.

L: Alright - there’s a lot to unpack there - talk to me like I’m a child - tell me a little about each one.

S: Ok, let’s do this. Mast Cell Activation Syndrome (MCAS) is the inappropriate release of mast cells in the body. Mast cells are immune cells that live in all body tissues that play a large role in keeping us healthy. They react to illnesses and foreign bodies by releasing mediators, such as histamine. If you are healthy, these mediators will help heal your body but with MCAS these mediators are constantly and inappropriately being triggered. Too much of something isn’t always good and can cause negative effects on the body. Triggers for this can be anything from food, exercise, environmental factors such as heat and weather, or smells. 

Ehlers-Dalos Syndrome (EDS) is a connective tissue disorder caused by a gene mutation in the body’s collagen. Connective tissue connects and supports tissues and organs throughout the body. There are 13 different subsets of EDS and I have been diagnosed with hypermobile EDS. There have been quite a few celebrities to come out with EDS, which is refreshing. Most doctors do not ever think to use this as a diagnosis, so I am glad to have influential people spreading awareness. When I was diagnosed, I was told that EDS caused my POTS and MCAS. Lucky me, I have the trifecta. 

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, which is a medical condition associated with a malfunction with the autonomic nervous system. The ANS controls the automatic functions of the body that we don’t think about, such as heart rate, digestion, and blood pressure. POTS is characterized as someone who has specific symptoms that occur when standing and a heart rate that increases by at least 30 beats per minute. When someone without POTS stands, gravity pulls blood into the lower part of the body and the brain senses the loss of blood that triggers a response to force more blood into the upper body, usually within a few seconds. When someone with POTS stands up, the brain triggers the heart to beat faster and the lower body blood vessels do not constrict, so blood is not correctly redistributed throughout the body and the body maintains the rapid heart beat. 

L: Was it a blood test that determined your POTS diagnosis? 

S: You get diagnosed via a tilt table test, in which they literally strap you to a table and test your vitals while laying down and then they move you upright and test your vitals again. If your heart rate goes up a certain amount, you are confirmed for having POTS. I have never been more terrified during a test. I heard horror stories about this, but passing out was never a symptom of mine so I figured it would be fine. They aim to have you on the table for 20 minutes I believe but I lasted four minutes. I was sweating, nauseous, and had tunnel vision in my sight and hearing. If they wouldn’t have stopped the test, I would have 100% passed out. This condition is the one that is the most life altering. I would not wish this on anyone.

L: Just reading this made my breathing speed up. That’s so awful.

L: Let me ask you - if I didn't know all of this about you - would there be symptoms that I could visibly see?

S: Not really, which makes it that much harder to be believed. Sometimes I will get rashes on my arms when my MCAS is really acting up. You may also be able to notice how dark red my lower legs and feet get after showering or standing for a while, but other than that you can’t see any of the symptoms.

L: Is there a cure for any of your conditions?

S: None of these conditions are curable. You treat the symptoms to be as comfortable as possible. 

L: follow up questions - 

#1: how long did it take you to get diagnosed? 

#2: how many doctors did you have to fire?

S: It took me close to two years to finally find the source of my GI problems, which was the first indicator something wasn’t right. After I was diagnosed with MCAS, it only took me 3 months to get diagnosed with POTS and EDS. I am one of the lucky ones. That being said, I was the one who did the research, found the specialists, and asked for the testing that led to the positive diagnoses. At that moment, I learned that you have to be in charge of your own health. 

I was very lucky with every doctor I saw. I have only had to fire three doctors. Two were because I felt like they had done everything they could do to help and the third one was because her final treatment plan was to simply treat the symptoms without finding the cause. That was the last time I cried leaving a doctor’s office. 

L: The days you feel horrible - what do you want people to know?

S: It’s hard to understand that someone can feel horrible when they look healthy. I want people to know that just because I look normal or I’m not talking about feeling bad, it doesn’t mean I feel fine. Most days, my pain and symptoms start the moment I wake up before I even get out of bed. My body constantly aches. Some mornings my hands hurt so bad, it’s hard to get ready for work. For me personally, my baseline pain on a scale from 1 to 10 is a 5. Even the smallest tasks can be hard. A simple shower can cause dizziness, swollen feet and my heart rate to jump to 150. The worst part is not knowing when I will feel bad. It causes so much guilt having to change or cancel plans last minute. It’s also hard to shake the guilt that I should feel lucky instead of disappointed because it could be much worse. I am still learning how to let go of that since you can’t compare your illnesses to anyone else. 

L: Who's your support system?

S: My fiancée Bryan, my family, and my friends. I am very lucky and grateful to have so many supportive people in my life. Also, my job is very accommodating and understanding. There are only a very few within my support system that know everything I go through on a daily basis. Thank you to those people who have been there every step of the way. 

L: Since you’ve gone through all of this - do you feel like all of a sudden there’s more and more out on social media about your conditions?

S: I think so, or it may be that I notice it more. It helps that we have people like Sia, Jameela Jamil, Yvie Oddly, and Leah Dunham speaking out about the condition. I think social media for this purpose can be such a powerful tool. It helps you believe that you are not alone. But on the other hand, it can negatively affect people. There are those out there who accuse you of lying or tell you that yoga and essential oils will treat the condition.

L: Ohhhhhh Stephanie… don’t get me started on the essential oils lol… or the other suggestions people offer. I wonder if people know you don't have to suggest something when you know nothing about the subject??

L: & do you have the same thing as me now - friends are coming to me to tell me they’ve been recently diagnosed or they need to send their friend to me because they have questions because their doctor won't listen to them?

S: Yes, some! I have had friends tell me about their friends symptoms and I have made recommendations if it sounds similar to mine. With my conditions, no one person looks the same. With MCAS, I was finally diagnosed via a colonoscopy biopsy, which isn’t the way most people get their diagnosis. It’s pretty common for urine tests and blood work to be negative and when it is, most doctors just move on. I am always happy to pass along my experiences like this in hopes that it can help someone else. 

Alright - let’s get to know a lil more about you that has nothing to do with medicine or immune systems. 

L: What's your most used emoji?

S: ??

L: What's your fav app?

S: I love my Podcast app, but I just downloaded Marco Polo. You can send video messages and it is a great way to keep in touch with people when you are tired of playing phone tag. 

L: what’s the last thing you googled?

S: “America Ferrara Superstore” America posted on Instagram that she will be leaving the show after this season. This show is so good, I had to know why. 

L: I follow her on IG too & I’m so sad she’s leaving the show. They've done such a good job with not making her & Jonah’s relationship all drama & monopolize the show - I wonder how they're going to end it? But also - I’m excited for her because I think that means she’s going to be doing more directing & producing. 

S: I know!! I don’t know how the season can end in a satisfying way with her leaving that soon. So bummed!! Highly recommend Ugly Betty if you like America Ferrera! 

Thank you Stephanie for educating me on the new you. I admire your courage to discuss and to know you’re the biggest advocate for your health. 

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