Oklahoma is the place to be!

18 03 2015



Theres an event next month. In Oklahoma. For folks with porphyria and their families. I’ve wanted to go, but I’ve been afraid to try to go, because everything’s been a failure as late and I can’t take failure anymore. 

But my friends want me to go. I want to go because my kids will meet other kids affected by porphyria in their life somewhere. Because my husband will meet other husbands of porphies. Because my family will get a break from the struggle and grind of everyday life with a sick mom. Because my kids have been begging to ride on an airplane.

My friends want me to go so I can network with other porphies, learn about the latest and greatest in porphyria land, and meet with the expert who will be there for a Q&A. 

So they set up a fundraiser for me, and at just two days in, I’ve almost got half of what I need. I’m starting to let myself think the trip will happen. STARTING TO. If I don’t get enough, I’ll at least pay a medical bill with what was raised. Which is something of significance. 

Here’s the grit on the event in Oklahoma. 

And here’s the link to the fundraiser. 

If my lovely followers would pass this link around the world and back, I’d be ever so grateful. My friends love me so much, and they remind me to take care of myself first. I have a hard time with that, as most of us with spouses or children or jobs or commitments do, but it is NOT AN OPTION, ok? Remember that. It is an ABSOLUTE. The simple fact is: if I stop taking care of myself to take care of my kids first, I will get sick and not be able to take care of my kids at all. If you don’t take care of yourself, you will crumble. You know that. SO DO IT. Like I’m doing it. By asking the world to give me a couple of dollars, per person, to help me get to the place where I may meet people who can help me find a healthier, happier quality of life. 

It’s certainly not easy, asking for help. In fact, for many of us, it feels damn-near un-doable. You’d rather crawl into a hole in the ground than ask your friends for help. (Especially monetary! Shudder.) But trust me: once you get past the initial horror of the ASKING part, I bet you’ll be shocked at how easily people oblige. People are inherently good (or I choose to believe they are, anyway,) and want to help whenever they can’t. They just don’t know how or when, unless you tell them. How often, when you’ve updated your Facebook status to let everyone know you’re back in bed or in the hospital or having the toughest day ever, have your friends said “what can I do to help?” Probably fairly often. 

Guess what. They are sincere, the lot of them. Instead of saying “oh just keep me in your thoughts!” or “thanks but I’m hanging in there!”… how about saying “well, a meal would be great. I’m too tired to cook. Would this weekend work?” Or what if you said “I’ve been in bed for three days and the kids have nothing to wear! Do you think you’d be able to come over this afternoon and maybe throw in a load of laundry?” 

Sounds uncomfortable, doesn’t it. 

But it doesn’t have to be. Your friends will be happy to help, most likely, just as you’d be happy to help them. 

And the upside to this is that you have one less worry, a bit more rest, and some energy to put into something that counts. Like your kids, your spouse, your job. And there’s certainly no shame in that. 



Sending you all love and light! 

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