Wednesday, February 4, 2015

mast cell face!

See that photo? that's my mast cell face - see all the pink around my cheek and chin? Itchy, red, looks like I have beard burn? Mast cell reaction, to I don't know what. Too many histamines somehow. Something I ate? Wish I knew.

There will be a time when I'm not still pursuing the diagnosis, but have been diagnosed. We will know as much as we can know, and this will just be "my life". And there will be coming to terms with what that means. Having the diagnosis of EDS means there are PT options that can help with strength and pain. Mast cell disorders have some pharmaceutical mast cell stabilizing interventions, but there is no guarantee they will work. They COULD cause me to be less reactive to food and my environment, and ideally that's what will happen, but no guarantee.

Right now, though, my life is a series of doctor visits, physical therapy visits, and lab visits. It doesn't really seem like I leave the house anymore except for these visits and grocery shopping. Being a spoonie, with a very limited number of spoons, and usually crashing after these visits, means that I don't really have the resources for anything else. Also having gotten sick almost when we first moved to this area, I have no former community to draw from, or already established friends, save for one. And I am really so very burnt out on healthcare facilities.

Our little family is a sort of island - our house is this bubble we live in, and we have all found ways of coping with having to be inside it so much of the time. And really, inside - because our neighbors sometimes have fires - either on their property or in their fireplaces, it doesn't matter - the smoke from them causes me to react just the same. And other times a neighbour will use some sort of horrid chemical on their lawn - it killed my bees a few weeks ago when someone used something. Those days I can't even go outside or open my windows.

Much of the time technology is all that keeps us even remotely connected to the outside world. We do have a couple of friends who are kind enough to be willing to drive to our home and just visit us here, and they have been a great girt - I cannot possibly convey to them what an incredible difference they make in my life just by being willing to do that. But most of our lives are lived on Facebook and Skype, and it's really difficult not to feel pulled down by the lack on actual human interaction. I mean sure, we have each other, but variety is the spice of life, and we are all at heart pretty social people. My husband at least gets to work outside the home and see his coworkers daily - sometimes I think it's the only thing keeping him from imploding. 


It's possible that a wheelchair or a scooter is in my future - whether near or a little bit farther I'm not yet sure. I do know that right now, even a day at a science museum is beyond my capacity. And by "day", I mean less than two hours. Walking the hard floors and going from building to building was just more than I could manage, not to mention the lights an noise. But if I had a scooter or wheelchair, I wouldn't have to expend so much energy, and I might be able to manage more days out doing fun things, rather than just going to see healthcare providers all the time. a person NEEDS joy to really and truly heal.

I still don't know what might be my new normal and what might be temporary. What can be helped and what needs to just be accepted as the way it is. How to process any of it. How to allow it into my world and embrace my life.

So as we continue down this road with the doctors and getting the diagnoses happening, I might be getting more of these resources, and figuring out more of these things. In the meanwhile, my joy is in listening to my son Skype with his friends, creating things with my hands, snuggling my animals, moving my body in whatever way I am able, and connecting with my friends on Facebook. 

1 comment:

  1. You have a heart full of gratitude, appreciation, and compassion. Love you, and your friends as they reflect the same!

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