Systemic Mastocytosis: Creating Your Own Sanctuary

Pam Hodge: I brushed my teeth and used some mouthwash one morning, and then my throat started swelling after that, and I had not even had any food.

Graphic: After experiencing allergic reactions, Pam sought medical attention, and consulted with an immunologist who played a role in diagnosing her with systemic mastocytosis.

Pam Hodge: I just remember the paperwork he gave me. There was something listed as "mint." So I ran down the stairs and I found the paperwork. And sure enough, it was salicylate sensitivity, and mint was listed as a salicylate. And so I connected the dots and realized "Okay, I am sensitive to salicylates." I think 30% of people with mast cell issues are reactive to salicylates. They're everywhere. They come from plants. It's the plant's little defense system. And so, all of your natural products that we use in our houses are going to have salicylates in them.

So I had to do a 180 with everything in our house. We had to change everything. We had to get all those products out that had a high amount of salicylates. Which, ironically, I had, for a little while, gone to Trader Joe's and all the places to get all-natural everything: deodorant, shampoos, toothpaste, and all that stuff. I started eating a bunch of plants, trying to be super-healthy, and so I had inadvertently made myself worse because of that.

I had two children at home – the third child had already moved out – but they all had to change. They had to change everything. They had to change their deodorants. They could not wear perfume in the house. They did not like that. That did not go well. One of them would try to sneak it, and I'd be like "Okay, I'm 300 feet away, and I know you've got perfume on. You can't do that." And so everybody had to make sacrifices to keep me healthy.

My husband, he's hung in there. You read so many situations or cases where the spouse just leaves, you're sick, and they're gone. And thankfully, he's always stayed around and takes good care of me. He goes with me to get my Xolair (omalizumab) injections, which is – I've heard people say, "Wow, that's really nice of him to do that," and it is really nice. Because they have you sit there for 30 minutes to make sure you don't have anaphylaxis. But then he drives me so that when I'm driving alone I don't have anaphylaxis on the way home. And that's something he wouldn't have to do, but I'm glad he does, just because it's something that he goes out of his way to do to keep me safe. And so, he's had to put up with a lot, for sure.

And like I had mentioned before, we can't travel due to my illness, so we've made a little sanctuary in our backyard. We have a little pond and a nice patio. And so people are taking vacations; we just wander to the backyard and enjoy our backyard. I think I'm a homebody anyway, and I think he is as well, so thankfully, we're matched very well in that way. But we enjoy what we have going back there, and it's really helped to have a place to escape and just feel at peace here at our home.

So I used to feel like I was a prisoner at home when I first got sick, but now, I don't have that. It's taken a while to adjust, but I realize that the house is my sanctuary. It's my safe place, and it's not a prison. It's where I'm actually the safest. And so, I still have a lot of triggers when I go out in public: perfume, chemicals, and those things in a store could send me into anaphylaxis. So I don't go out a lot. I don't go into public a lot. And so, thankfully, he's okay with that. He's put up with a lot, he's still hanging in there, and I really, really appreciate that.

Basically, the support groups and my good friend pretty much get me through the lows, and it's up and down, up and down, up and down. But the support groups allow us to have that connection where we don't feel alone, and if you feel alone, you also feel hopeless and helpless. And so the support groups have helped me as much as they've helped other people. I might be a leader of the support group, but it's as useful for me as it is for the other people who attend.

And so I also have a good friend who I met in a support group, years and years ago, and she is also a patient. She has mastocytosis, and so we really hit it off. And you meet a lot of people, but there are certain people who you tend to hit it off really well with. We actually met in real life, so that's fun. We've met a couple of times in real life. But if I'm having a bad day, I basically call her and say, "Hey, I need a therapy session." She's not a therapist, but she's a good listener, and I do the same for her. If she's having a bad day, she calls me.

Again, it goes back to she understands my situation and I understand her situation. And without that connection, I'd feel very alone. And especially with a rare disease, it is very hard to find other people in your area, in your community, in your state, and in your region, who you can, one, connect with and relate to, and two, get along really well. So I'm appreciative of the support groups and my friend who helps me out with that.