The reason behind the need- breathing

I stay in a lot because it's easier than going out. I never take the easy way out, but here if I don't choose "easier" that means I choose "harder" and when harder is in reference to your survival, it's not something I like to risk.

I stay in a lot because I have needs that others would see as privileges or options. I have needs that can't always be met if I go out, and even when they can be met, sometimes people don't understand or follow through. I have needs of a different way of living that others aren't accustomed to. Because of MG, they are in fact needs. If I don't have them I take one more step in the direction of the hospital. Allow me to explain, please read to understand the reason behind the need.... specific to breathing.

There is a breathing test at the doctor's office that measures your MIP and MEP. Basically it measures how strong your diaphragm is (the muscles surrounding your lungs which allow you to breathe in and out). The closer to 100% the better. Normal is at least above 60% for one and at least above 80% for the other. Well I am anywhere from 20-45% on both, depending on the day. That is bad, really bad. And I feel it, some days more than others. Some days all I can do is merely lay there and breathe. Just breathe. Because it takes that much effort. Like an elephant sitting on my chest or the most tightly wrapped band wrapped around my chest and abdomen over and over and over and over. Each breath is an effort. So to reduce that effort whenever possible, I need...

Air conditioning- Even if I am cold, I need air circulating and I need it to be cool. First, heat makes MG worse, so that's important. Sitting outside in the sun or heat is bad and I can't do it. But second and probably more importantly is the effort to take in a breath. If air is circulating it makes it easier to take that breath in. If air is stagnant or humid, it becomes more of an effort than that already 20-45%... even on a "good" day. If I remain in a hot, humid, stagnant air room for more than a couple minutes I near closer to a hospital visit the longer I remain without that air. I've asked for oxygen, at least for overnight, but of course the way insurance works they won't cover it unless my oxygen saturation drops below 88% while they are monitoring it. That's ridiculous. Anything under about 95% is not enough oxygen as it is. I measure it myself below that regularly. But of course when in the office and those 30 seconds they measure it, it's fairly normal.

Elimination of Allergens/Dust/Animals- Anything I am allergic to makes it again more difficult on top of the already difficult breathing. These days it seems I am almost allergic to life. For us with MG allergy doesn't mean a little sniffle. It means breathing trouble and as you read above, anything that affects breathing is extremely dangerous when its already so hard to breathe. So mold, pollen, weeds, grasses, flowers, cats, dogs, rabbits, feathers/down, dust... these are all triggers, some more than others. Yes I do still want a dog so so bad but a hypoallergenic one, and I'm apparently not allergic to dogs even though my body says I am. I also learned those allergy tests don't nearly pick up everything so it makes more sense to listen to your body than a piece of paper. Anyways, getting off topic.. other triggers include perfumes, colognes, cleaning supplies, static/dryer sheets, hairsprays... pretty much anything that is not natural and even many things that are. Roses used to be my favorite flower and now I'm allergic. Tulips seem to be the only ones I can tolerate at the moment. So, that's a lot of things to avoid there because the vast majority don't think of their perfume or these other "little" things being harmful to others, but they are.

These accommodations will help us with MG breathe a bit easier. It will still be hard if MG affects our diaphragm but it will at least help prevent a trip to the hospital.

I feel it's very important to get this word out there about MG, chronic illness in general and specifically an invisible illness. People tend not to believe what they can't see. But we need to be aware there is more to it than what you see. We need people to understand why we look fine but aren't fine, why we need accommodations, why we need awareness, and why we need a cure. MG is serious. MG can kill. It's blunt but it's true and we need people to know it. Thank you so much for reading and helping to spread awareness. God bless.