Mast Cell Activation Disorder and “Weird” Anaphylaxis

I have Mast Cell Activation Disorder, which can also be called Mast Cell Activation Syndrome, or Mast Cell Activation Disease. In case you don’t know what this condition is, I will give a brief explanation. MCAD is a very complicated rare disease that was only discovered in the early 2000’s. In simple terms, a person’s Mast Cells are responsible for inflammation and allergic reactions. Everyone has Mast Cells, but mine are overactive. Because of this, I have a LOT of allergies to different things, and new allergies that like to develop. Sometimes I will have an allergic reaction and not even know what caused it. There are many Mast Cell triggers which I will write about in a different post. Like I said, MCAD is a very very complicated condition, and even doctors have a hard time understanding it. It is important to note that each person who has MCAD will have different triggers and different kinds of reactions. My experience that I am about to share may or may not be the same as another person with that condition, which is part of what makes it so complicated.

Okay, now that I gave you a brief explanation on what MCAD is, I will tell you about my experience with anaphylactic reactions. I am currently anaphylactic to peanuts, cloves, watermelon, and cucumbers. (These are just my anaphylactic allergies.) Now, this is where it gets complicated. Each of my anaphylactic reactions are slightly different. The good thing is that I have learned to know the warning signs when a bad reaction is coming on.

I have slow onset anaphylaxis, meaning that it takes longer to make me stop breathing than typical anaphylaxis does. When I start to have a bad reaction, it can take up to 40 min to get to the climax. Another unusual thing about my anaphylactic reactions is that they are hypertensive. Instead of my blood pressure dropping, it goes up. Once I use my epi pen my blood pressure goes back down to my normal level. This is totally backwards to most people.

Because of these bizarre reactions, I have had many doctors tell me that it might just be anxiety. (They always tell me this after they have given my epinephrine, and a bunch of other meds that stopped the reaction.) First off, I know anxiety. I even have anxiety attacks sometimes. But this is 100% different. I will have a tone of allergic reaction signs when I am having an allergic reaction that do not happen during anxiety attacks. Also, whenever I have a bad reaction I have a test that I do. When my throat is feeling tight and I can’t breath well, I drink water. When I need to take my epi pen I can swallow the water, but it gets stuck at a certain point and I tip myself upside down and the water will come out. This shows me and the doctors that my throat is physically swollen. With some reactions I will feel like puking, but my throat will be too swollen. I also get rashes, headaches, parts of my body going numb, and all sorts of other symptoms depending on the allergen. Doctors who know about MCAD have never thought my reactions are anxiety, which says something.

Please feel free to comment below if you have any questions for me, or if you would like to share your own experience. I would love to hear from you!

Growing Up With Undiagnosed Autism

I always knew I was different from other kids. No matter how hard I tried to make friends and fit in, I never felt “normal.” I always felt it deep down, but didn’t know how to express it. No, I didn’t have speech delays. No, I wasn’t physically disabled. I could walk and talk, and to most people I seemed like a perfectly ordinary little girl. The only people who noticed something different about me was my Mom and my Grandma. When I was 3 years old my Mom started doing some research and thought that I might have Sensory Processing Disorder, but my Dad didn’t want his daughter to be labeled. Although I was not diagnosed, it was always in the back of my Mom’s mind.

As a little kid I was not able to figure out what made me feel different, or even how I was different than other kids. Looking back I can now name some things.

• First was my clothing preference. When I was little “comfy clothes” were not a thing. Jeans, lace, tags, socks, hats, zippers, and itchy fabric have always been a problem for me. As a result I preferred to wear dresses. Of course there were times that dresses were simply not practical, and so I was forced; (yes forced) to wear jeans.
• At fourth of July parties I had to wear ear muffs because the fireworks would make me have a meltdown. And usually I would end up hiding under a blanket as well. I wanted to like fireworks. I mean, everybody else liked them. I didn’t get why they hurt me, but not anyone else. Every fourth of July I felt bad because my family didn’t go see fireworks very often because of me. I didn’t know what was wrong with me and tried so hard to act like my siblings but every time I freaked out.
• My older sister recently told me that when I played with her and other kids I always seemed to be confused about what was going on but would try to just go along with it. I am told that I am very literal, and I am not good at imagining things. I always played very realistically. And honestly didn’t like playing. It was just the normal thing to do so I would play so I could be normal.
• As far as school went, I was home schooled until halfway through my sophomore year of high school. Math has always been a complete nightmare, and often I have been told that I am arguing about a math concept, when in reality, I truly do not understand how to do it. I will go as far as to say that math has been one of my biggest struggles in life. Because of my struggles in school I fell behind and felt stupid. I didn’t know why I struggled so much.
• Lastly, meltdowns. This is probably the worst part about growing up with undiagnosed Autism and Sensory Processing Disorder. I felt terrible about still having meltdowns when other kids my age, or even younger had grown out of them. I had zero ways to cope with my sensory issues, and when I had a meltdown, and everyone else thought that I was just being a brat. I knew that I needed to stop having meltdowns but I didn’t know how. My family never went to Disneyland and other fun things like that because they were afraid that I would melt down and ruin it.  Because of this I have battled depression since I was eight years old. It has only been in that last few years that it has been getting better.

In conclusion, growing up I always felt lost and confused. Trying to fit in, trying to match up. I never knew why I didn’t understand people, or why they didn’t understand me. When I was older, my Mom told me that she thought I had Sensory Processing Disorder. This actually made me angry. I had fought the feeling of being different for so long that I was in denial. I was angry that someone else had noticed it. I just wanted to be like other kids. Over time, I softened to the idea, realizing that maybe someone could help me. I was finally diagnosed with Sensory Processing Disorder when I was 13. Being a “high functioning” girl, I was not diagnosed with Autism until three days before I turned 17, where I was also diagnosed with ADHD and Dyscalculia.

Had I known about my Autism growing up I would have been able to understand myself more. My parents would have understood me better too. I think that my childhood would have been a lot less frustrating if me and my family would have known.

My Sensory Struggle At School

Written by an Autistic

I am a Junior in high school. My School has about 1500 students and about 7,256 different smells. Yes. Smells. Now, most people will probably read this and think, “This girl is nuts.” But that’s impossible, because I’m allergic to nuts. 😉 Anyway, it’s true. I can smell everything from fabric softener to shampoo, just by standing next to someone. Once, I caught myself wanting to compliment a girl on how nice her shampoo smelled. Yep. I seriously I was going to. Until I remembered that that is not exactly normal, and would come across as awkward, especially since the girl in question does not like me very much. It probably would not have gone over very well.

Walking through the halls during passing period is a nightmare. I can smell every single person all mixed together. (Which is not a good smell.) Lunch time is the worst. We have this thing called Decca. This little lunch store thing. Every time I walk by it I have to force myself not to gag. Not necessarily because it smells bad, but because it puts my sense of smell over the edge. I simply can’t handle it anymore.

Next are the sounds. My school has probably the same amount of sounds as any other school. The halls tend to have the most. Tennis shoes, high-heels, Dock martins, etc., all make different sounds on the floor. Then there are the people talking, yelling, shouting, swearing, and laughing all at once. High girl voices, and deep guy voices. Teachers saying hello to their students. Backpacks zipping, lockers slamming, and then at the end off all that noise-the bell rings. I’m pretty sure I jump almost every single time it rings. (Each ring lasts about 5 seconds.)

To top it all off, there is the crowd of people trying to get to the right place at the right time. People bump into me, but most of the time I bump into them. My sense of balance gets all messed up. When I see a friend in the hallway and they smile or say hi, I don’t respond most of the time. It bothers me, because the truth is, I can’t respond until about 10 seconds latter because there is too much overwhelming my brain at that point. By the time I am able to respond, the friend is long gone. However I figured out a way to help with this problem. If the entire time I am in the hall, I am thinking about saying the word hi, or smiling, I am more likely to be able to do it at the right time. If I don’t do this, I probably wont be able to respond.

Okay so, I think I made the point clear. I HATE passing periods. I have been offered accommodations to be able to skip passing and just get to class late, but I said no. The reason is, is that Sensory Processing Disorder WILL NOT control my life. I have to learn how to get through these things in the world if I ever want to be successful in life. Yes, there are things that will always bother me, and there are a lot of things that I simply can’t do. Honestly, I still haven’t figured out the best of ways to cope with things like passing periods, but I know that at some point, with enough trial and error I will figure it out.

The list of all the things that overstimulate me at school is so long that I am not going to list them all off. Some days something bothers me, and other days the same thing that bothered me yesterday won’t bother me today. I wish it was more consistent. The worst part about this is people not believing me. My teachers will say things like “You did it yesterday, so why can’t you do it today?” The thing is, that with Sensory Processing Disorder, yesterday doesn’t matter. I literally have to take things one day at a time.

If you, or someone you know is living with Sensory Processing Disorder, (or something like it) or, if you are trying to learn more about it, fell free to comment or ask questions below. I would love to hear from you!

~AJ Faith