I can’t thank you enough for all the positive feedback and love from my last post. I was in a very angry and low state, and that post really helped me to deal with everything. I wanted to address a few misconceptions about this illness, and hopefully answer some questions.
One thing I’m always asked is, “have you thought about allergy shots?”
First off, we asked. They wouldn’t help. MCAS is a blood disease with my mast cells not behaving in a normal way. I have triggers. My triggers aren’t true allergies. With allergic disease, you could potentially train your body to stop the adverse reactions. When it comes to MCAS, every potential exposure can and will progress the disease. So, I know the suggestions for allergy shots come with love, please stop. There’s nothing out there that will completely get rid of my symptoms. I might be able to take some medication that will lesson the reactions, but they’ll still be there. And the triggers may change. For instance, I used to be able to drink pop like crazy. Out of nowhere, the caramel coloring in dark colored pops (colas) became a trigger. I gave up all pop (minus the occasional Sprite here and there). While in Minnesota, I wanted to have one last Pepsi, and I wanted to savor it. It was a big mistake. I had maybe 6 oz of the bottle, and I ended up sick for 2 solid days. So, it became severe in the few months that I didn’t drink the colas. It’s like that with so many things. I’m still learning my triggers, and they will change. Bear with me while I’m still learning my body.
Another thing people ask is, “if you have your Epi-Pen, why do you need to go to the hospital? I thought Epi-Pens stopped reactions.”
WELL…you’re half right. Epi-Pens may halt a reaction for a period of maybe 15-20 minutes, but it won’t stop a full blown reaction. For that, you need the medications that are given at the hospital: 2 types of antihistamines and a steroid. They are really the only medications that will completely stop a reaction. And when you’re taking these medications, you need to be under close eye of a trained emergency team. The thing with the Epi-Pen is it wears off very quickly. And then, even after you’ve gotten your meds, you can have something called a rebound reaction, basically another round of anaphylaxis. It’s not fun. But it’s better to be in the hospital when it happens, rather than at home where you don’t have the correct treatment plan.
“Can you outgrow your allergies? Someone I know was really allergic to milk and he outgrew his allergy. Do you think you could do that?”
The short answer? No. This disease is a progressive disease. It will continue to get worse and worse as I get older and come into contact with more stress. There’s no way to “outgrow” this disease. I wish there were. There are treatments, but nothing will completely fix this for me. And while I’m happy for your friend, it sucks that it’s thrown in my face that others are healthy. I know that sound petty, but if you’re chronically ill, you now what I’m talking about.
“DO YOU WANNA SEE MY PICTURES FROM VACATION/CONCERT/ADVENTURE I JUST DID?”
Honestly, no. I don’t. And I’m not trying to be mean, but it’s really hard for someone who “can’t” to see people do the things that you wish you could. It sucks when all you want to do is go out and see something, and not be able to; seeing people who you care about getting to experience life is great–I love hearing about it. I don’t want to see it. Not everybody thinks like me. There are others who love seeing pictures of what everyone else gets to do…because it’s like they’re there with them. But speaking for myself, it just emphasizes what I’m missing.
“So, you’re just allergic to a bunch of stuff? It could be worse. You could have cancer…”
I cannot tell you how much this statement irritates me. You’re right. It could be worse. But by telling me that it could be worse tells me you’re not taking me seriously, or you don’t understand how complicated this disease is. You’re negating my own feelings. So please stop telling me it could be worse. I know it could. I never dreamed that I would be this sick. Ever. I have terrible days where I can’t get out of bed. I have severe depression and anxiety caused by this disease. I have lost all sense of independence. We are all fighting battles of our own; don’t compare me with others who are sick. It’s a completely different journey.
“You slept all day? I’m so jealous.” “You don’t have to work? You get to stay home and not work all day? I’m so jealous.”
No. Don’t be. It’s miserable. My sleeping habits are terrible. In a flare, I can sleep anywhere from 15-20 hrs a day, and still wake up tired. It’s miserable. You don’t want this. As for not working, I’m going stir crazy. My mentality is still that of a person who wants to get out on their own. I HATE not being able to work. I’m bored very easily. I try to find ways to pass the time, but it’s lonely. Please. Don’t be jealous of this–I’d do anything to be able to get back out into the workforce. You don’t want to be stuck at home doing absolutely nothing.
I’m doing my best to get through this. I simply want people to know the answers to different questions I’m asked frequently. I’m sorry if I sound harsh or mean at all, but these questions have been getting on my nerves.
This weekend I’m headed over to Lake Michigan to spend a long weekend on the beach. I’m so excited about this…I know I “rest” a lot at home, but I need this–to get to the beach and relax. People have criticized me for going on vacation when I’m sick. Go away and don’t judge me. I’m not apologizing for this. Yes, I have an incurable, chronic illness. Yes, I struggle to do things at home. No, I’m not an invalid who needs to be cooped up in a cage all day long. I’m still 28 and need some freedom.
If you have more questions, please ask. I’m an open book about this illness and love to share what I know.
Sending all my love to you all,