Power. So simple. So necessary. Let's get it back for Alexandra and Bear.

Photo copyright Alexandra Lynch; all rights reserved.

This is Bear. He's the husband of my friend Alexandra.

And when I say, "This is Bear," I mean exactly that:  This is him, right now, today. In the hospital, hooked up to a ventilator.

Life has not been kind to Alexandra and Bear and their family in recent years. They both deal with disabling conditions resulting from a very bad car accident some years ago. Their medical conditions, coupled with a bad economy, have reduced the family finances to dust. I didn't know how bad it was until last week, when Alexandra mentioned that their utilities had been off. For a while.

Unfortunately, last week, Bear what they thought was a routine asthma attack but turned out to be something much, much worse. Heart attack, coupled with diabetes. Multiple blockages, none less than 70%. By the first of this week, he was in the hospital, undergoing a quintuple bypass. He's still a young man. A young man now with five bypasses in the arteries of his heart.

Meanwhile, Alexandra has to cope with his condition, which has to be terrifying for her. He's in good shape overall, apparently, but there are, of course, some complications. Meanwhile, she has family responsibilities, both children and parents — and hot weather looming, and no power on in the house. 

This is not workable.

Even in the absolute best-case scenario, Bear will need the power on to refrigerate his insulin when he finally comes home. But he will also need air conditioning to provide some relief from the heat and humidity; his condition can't be aggravated by severe physical discomfort that's easily fixed with a little electricity and the money to pay for it.

Alexandra has put up a GoFundMe page to try to raise $2,000.  This will get any arrearages covered and get the power turned back on. But she and Bear are going to need a lot more support than just a little electricity in the weeks and months to come. Their lives have just been altered in catastrophic ways. They'll need help over the long term.

So please, go here, and donate if you can. Even if you can't, please share the link with all of your networks. We'll be in for a bit ourselves later, when I've had a chance to see where we are for the rest of the month. At that point, I'll ask you to help match it, however modest it may be.

Let's get Bear back to doing what he loves:

Photo copyright Alexandra Lynch; all rights reserved.

and Alexandra back to being able to smile like this without thinking about it:

Photo copyright Alexandra Lynch; all rights reserved.

Chi miigwech.

"But You Look So Normal!" Living With Multiple Autoimmune Disease

Photo copyright Wings, 2014; all rights reserved.

Author's Note: This was first posted at Daily Kos on October 24, 2010, as part of the twice-weekly series Kosability. Because I was forced by circumstances to spend this week revisiting these issues in gory detail and exposing them and their often-humiliating effects to a host of perfect strangers, it seemed like as good a time as any to cross-post this here. I know some readers will have missed it he first time around, and I know some of them are struggling with their own chronic health issues (or have loved ones who are).  

Most of what follows still applies, although as you will see, I'm no longer permitted medications. That's not necessarily a wholly bad thing, considering some of the side effects. You'll also notice that I don't parrot the line currently in vogue about FMS. That's because it's in vogue among the ads disseminated by Big Pharma, but I haven't seen anything to support the notion that the earlier information does not still apply. Oh, and another thing: I do also use a cane now, at time. Most days, in fact, when I first get up in the morning, and on my way to bed at night. It's a really cool cane, though.

A final note: I have dealt with my symptoms longer than many adults have been alive. I know them better than any medical professional ever will. I also know intimately my own particular mix of sensitivities and reactions and responses, and I know what my body can handle and what it cannot. If it's out there, I've tried it, and it doesn't work for me. It's not Lyme. It's not gluten allergy. It's not any of the myriad things that may have been the case for someone a reader knows. Much of the discussion got hijacked the last time around, and I won't permit that here. I'm not susceptible to evangelism, and I'm too tired to be polite about that fact. So please, no advice in the comments.

I had a couple of alternative titles in mind. Like "Pain: Every Second of Every Hour of Every Minute of Every Day." Or "I Feel Like an Eighty-Year-Old Woman." Both true. But I finally settled on the one that I hear all the freakin' time:

"But you look so normal!"

It's usually tinged with disbelief, sometimes laden with open skepticism. How could someone like me possibly be sick?

And they're right — sort of. By most benchmarks — heart rate, blood pressure, blood glucose, other indicators — I'm extremely healthy. My diet is very healthy. My weight is pretty good; I put on 15-20 extra pounds while I was away from home taking care of Mom (because I didn't have access to healthy, unprocessed foods), but I've lost most of it. And at a fine-boned 5'9" or so, it looks like less on my frame than it actually is. My skin is good, at least superficially: relatively few wrinkles for my age, courtesy of good genes, having quit smoking, and the fact that I drink water by the gallon. Enough physical strength to lift 50-pound hay bales or a 100-pound dog, when needed (although I pay dearly for it every time I do it). I don't use a wheelchair; I walk (mostly) normally, without a cane.

So what the hell is the problem?