It's taken a little over a week, but I feel like I can catch my breath now. It's a shaky breath, but not a defeated one, I don't think. I have gone through my research frenzy for this MCAD thing, and I finally feel like I have enough of a handle to not feel completely swamped.
I know there is lots more to learn, but I feel like I have a little of the basics.
1. Drugs are not going to solve this.
They will not help with the chronic fatigue, or the cold and heat intolerance. They may not help with a lot of the pain. They may or may not help with many of the symptoms, depending on which of the over 200 substances released by the mast cells are actually causing MY symptoms.
They can be of some help in keeping incidences of anaphylactic shock a little less, which I oh so definitely want. However, I don't have shock very often, so this is more of a 'once in a blue moon' benefit for me.
2. I still have to avoid my triggers. These are the things that make me react, that we've been treating as allergies (some with IgE slightly elevated levels, admittedly). There is NO magic pill to make me not react to these. If I get too much of a trigger or get triggered too many times, it CAN potentially send me into anaphylactic shock. In fact, MCAD/masto folks are 33% more likely to have a reaction turn into shock.
So I have to avoid them. I still can't go near coffee, or perfume, or scents in shampoos and floor cleaners very often, which means I have to stay away from...from everything, it sometimes seems like. Friends' homes, hotels, book stores, grocery stores, banks, doctor's offices, airplanes, buses, trains, the sidewalk waiting at a crosswalk - all of these can be coffee and scent hazards. I was really, really hoping that with anti-histamines, I could be around my triggers without issue and be able to live more like I used to years ago, but that's not looking even remotely possible.
I might be able to really drug myself up on anti-histamines when I go, say, to the doctor's office, so I don't feel so bad afterward. But I don't know if I'll ever be able to go on a plane again, or take a train, or visit the majority of my friends in their own homes. Every time I trigger, meds or no, it makes me more likely to go off with the next trigger, it seems, so avoidance is the key.
I think this will be the biggest challenge, because it's going to take some real work to avoid feeling isolated and alone, and sometimes I know I'm going to fail. And the fact that we're testing my daughter for this right now makes me want to cry, because this will be her life, too. She doesn't have as many triggers, if MCAD is what she has, but...I don't want this for her. I don't even really want it for myself, but I really don't want it for my little girl.
3. I am a leaker. There seem to be two types of MCAD folks, leakers and shockers. All it means is that the majority of the reactions, once triggered, either lead to a leaking of 'stuff' into the body from the mast cells, or a quick release of it all which leads to shock. Some of us seem more prone to one than the other. Talking with other MCAD folks, however, being one does not preclude having a reaction like the other. Leakers can still go into shock, and shockers can still sometimes leak - sounds like I'm discussing diapers, doesn't it?
My daughter's diapers were of the 'shock' variety, by the way, with sudden explosions that released all the contents at once.
4. I need to rest more often. I will feel exhausted more easily just as a general rule, and exhaustion will make me more likely to trigger, so I need to make sure I get enough sleep. If I feel tired in the middle of the day, I should take a nap, or many naps, if needed. I will also feel exhausted more frequently after physical exertion, and should rest more after that, and be careful how much I do.
This is new. Not that I don't know I feel tired a lot, or that my bones ache like I have a fever, or that getting too tired makes me feel truly, genuinely horrible...I just never thought about it much. That was reality, now, since Valley Fever kicked my butt 7 years ago. The idea of slowing down is, not appealing, but I suppose it gives me an odd sense of both frustration and peace.
Frustration, because I want to be able to do as much as I want to, and not have physical limitations trip me up.
Peace, because I haven't been ABLE to do as much as I want to, for years now, and for the first time I don't feel like an utter failure at not being able to stay away, or do everything that I've wanted to do. I have real physical limitations that don't CARE how much I want something. If I don't listen to my body, it's going to stomp me in retaliation.
I've been experiencing this for years, but I couldn't help but feel like I was a failure. I was babying myself too much if I got extra sleep, or felt too tired to go out at night with friends and family. I needed to put in more effort and push through the exhaustion, ignore how exhausted and awful I felt, because I was just wussing out.
There is peace in knowing that this is not true. I don't want to think of having to miss so much, or avoid so much in my life, for the REST of my life. I can't even completely sit down and think about it because it's going to make me cry and mourn that loss for a good, long while.
But...I can adjust. I have the outdoors, I have my kids, I have friends, and pets and the internet. And if I'm lucky, I might even have travel every once in a while as well. Things could be so much worse; this could be the Walking Dead. How much worse would THAT be?
5. There is one last statistic that is haunting me: about 20% of people with this are able to work. Those are not good odds for either my daughter's future nor mine. I don't know the statistics on shocking and leaking; perhaps the leakers are more likely to be able to hold down a career.
I hope I can find one I can do, now that I am looking at something other than stay-at-home mom to support myself. And I hope desperately that my daughter can have one. I hope that she can go to college. I hope that she can have romance and love and an amazing life.
And even if all that is possible with MCAD, which it very much may be, I truly hope that she doesn't have MCAD.