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“Team Gadget” Now in Effect!

Please click here join me and Team Gadget!

– Sharon, the spirit of Gadget, and Barnum, bored SDiT?

P.S. See? I can write short posts.

Elizabeth

I keep deciding I’m going to save my energy for training Barnum and getting my writing career going again, and then things come up. Things like deciding to try to save someone’s life.

For months, I’d heard from friends about a good friend of theirs, Elizabeth Chalker (many of them call her Lizzy), being desperately ill, and how she was dying because they couldn’t find a doctor to treat her.

Well, I’ve been there. When I was really sick, first, doctors thought I had Lyme disease. Then, they decided I was too sick to have Lyme, that it must be something worse to be this horrible, something they didn’t know about. Some of them told me to go away and get diagnosed by someone else, because they didn’t know.

Then, other doctors knew I had Lyme, but because it was such a severe case, because I was so sick and it was so complicated by my other diseases, they said they couldn’t treat me. It was too risky. They didn’t want the responsibility if something went wrong. So, my friends and family thought I was dying.

Looking back, I realize I was dying. At the time, though, I refused to believe it.

So, I thought I understood Elizabeth’s story of isolation and unbelievable suffering and inability to find medical help.

Then I visited her website.

I saw her “before” picture:

Tall woman with long wavy red hair smiles at the camera in a black mortar board cap and black gown with green, white, and blue robe indicating advanced degree and holding a black folder presumably containing her diplomas.

Then the “after” pictures:

Close-up of a woman whose face is gaunt and emaciated. Her eyelids are half closed; it appears as if she’s not able to open them all the way nor that she has control over her other facial muscles, which are slack. Her hair is brown and limp. The picture is taken from above, with a pillow behind her head.

I thought, “That’s terrible. I really hope people can help her, but I’m so done in already, it will have to be other people. I don’t know her. People who know her will help.”

More time passed. A friend asked me to help. I made the tough decision to put my needs first.

Yesterday I got an email from a friend of Lizzy’s. She pleaded for help for her. She said, “Just watch this video.”

I watched the video — which another friend made about her, and I changed all my plans for the week.

I was wrong. Her story is so much worse than mine.

This is the video, below. It was very hard for me to transcribe because I frequently had to stop typing because I was crying too hard. It’s very painful for me to watch, because I know that if I hadn’t gotten treatment three years ago, I’d be in Elizabeth’s shoes. Or I’d already be dead.

Honestly, I don’t know how she’s not dead. That’s what doctors keep telling her, too: “You should already be dead.” Really comforting stuff for her to hear, I’m sure.

This is the transcript of the video.

(There’s no dialogue in the video, so it’s accessible to Deaf and hard-of-hearing viewers. The only audio is a song.)

She has had nobody — nobody — in her life except a good friend, Corey, who told me that Elizabeth is “a daughter to me,” who visits when she can — and Elizabeth’s dog, Symon, who — as I discovered from the video — died recently.

She is in bed around the clock, and she is dying, absolutely, unless she gets help. Her organs are failing. Without medical care, she will be dead. She is a devout Christian, and she has held on through “raw faith,” even writing a book about her struggle to survive, focusing on faith. She has asked her God to take her, but she’s still here. I don’t believe in God, and I still cry when I read about that. I don’t know why.

Because so many other people with Lyme who have gotten to know her over the years via the internet (which she is much too sick to use now) care about her, or just care that she is a person who needs help, she now has a chance. A specialist was found in Maryland who has agreed to treat her. It was very difficult to get an appointment with him, but it is booked for next week.

Hotel reservations are made, plans are made. Dozens of people have been working tirelessly to get her to this doctor. The problem is that the only way Elizabeth can travel is by air ambulance or nonstop charter jet. She’s too sick for anything else.

The people working on this tried for months to get a foundation, a celebrity, one of the mega-churches to help. To donate a plane. Nobody was interested.

They approached the charities that fly people for medical care for free, and would you believe, Elizabeth doesn’t meet their requirements, because she’s too sick? For example, one requires that patients be ambulatory and be able to switch planes.

So, I won’t be answering comments or posting blogs for the next few days (although a new — and fun! — post goes up tomorrow that I wrote a few days ago and scheduled to post on Thursday), because I’m hoping by this Sunday, June 19, Elizabeth will be on a plane bound for Maryland, to get the help she’s been seeking for years. Before it’s too late.

Training my service dog is important. Blogging is important. Writing interviews of people with MCS, and writing lesbian erotica and all my other writing is important. But saving a life? I can’t NOT do whatever is in my power to help make that happen.

So, I’m writing this blog.

I’ve also written a press release, which is something I haven’t done in nine years. I had to refresh my memory about how to do it by using internet “how to”s. My brain hurts.

I’ve just received word that the fact-checking is done, so we can start using the release. If you have experience contacting the media (newspapers, magazines, TV shows) and/or you have any media contacts, please get in touch. I could use the help. Here is the press release.

I emptied my PayPal account. I contacted a friend who knows pilots who is in Florida. She is trying to find someone who can donate a plane or their time as a pilot. And I’ll be writing another post, at my other blog, which I hope you will read, too. That will have to wait till after an eye doctor appointment (and recovery time) tomorrow. I’ll post a link when it’s up.

When this is over, and Elizabeth is on the road to recovery, I hope to get a chance to speak to her. I hope she, like me, is able to look back on the time she was dying and be so grateful that things are so different now.

– Sharon, the muse of Gadget, and Barnum (so bored AGAIN! SDiT?)

Barnum Picks a Name

The post is up at aftergadget.com of who Barnum picked for the jackpot. Barnum seemed to enjoy the process. The photos tell the story.

Thanks to everyone who participated!

-Sharon and Barnum, judge and SDiT?

The Fans Have Spoken!

Life is good. I have a warm, wet, slimy bouvier beard in my lap. (Bouvier beards are required by Dog’s Law to be gross. The Dutch nickname for the breed means, “dirty beard.”)

Now I have to worry about all the ticks he’s probably brought into the bed with him.

This May has been terrible for ticks. Appropriately icky for Lyme disease awareness month. Betsy, all my PCAs, and I have all found them on ourselves at least once, most of us have had one attached, though briefly.

I will soon put up my post on how to tick-check your dog. Meanwhile, please remember to tick-check yourselves. Very important.

Back to my amazing week. The response to my questions about Twitter and Facebook have wowed me. Thank you! I’m now tweeting with several of you! Very cool. I’m still learning how to say everything in 140 characters or less. (You may have noticed, brevity is not my long suit. No pun intended.)

I’m slooooowly starting to build a FB fan page. I will let you know when it’s up.

The auction is almost over. It ends in less than three hours! Some exciting bids have come in this evening (while I was taking a nap, mostly!)

Thank  you so much to everyone who has supported it!

Note: If you really want the thing(s) you bid on (including my stuff), please check the site, because some of you have been outbid and may need to snipe! (That’s a term I learned from Betsy, who sells on eBay. She tries to do it when she buys, but we have a slow internet connection, so it’s tricky.)

I’m extending the deadline for a couple of days for you to get your comments in at my other blog post. Because . . .

I would like to be able to thank you with an e-click or tweet-click from me (I have it as a wav file now, too!), and/or a thank you postcard (Sick Humor Postcards or Barnum card) from me in the mail, and/or if you’re interested in the After Gadget Jackpot, please go to yesterday’s blog about it and comment.

Random tangent: Postcard postage has gone up to 29 cents. I didn’t this, and have been part of a creative-postcard-sending circle, and we were all doing 28 cents of postage. Oy!

I know several of you have bid who haven’t commented yet. But I don’t know everyone’s other handles and names and e-addies, so it’s too confusing for me to try to put in your names, myself. (And if Barnum chooses you, and you don’t want the book or whatever, that’s fine! I won’t force it on anyone!)

Betsy has agreed to be judge when I have Barnum pick out the winner. (I plan to video or photograph the event.) She has pointed out that I either will need to put the pieces of paper face down, so Barnum can’t read them, or to have a serious talk with him about ethics, so he doesn’t choose someone intentionally. After all, if Dumbledore’s Goblet of Fire can be hoodwinked, you never really know if you have an impartial judge (lying across your feet in your bed, snoring).

Can you tell I’m a bit giddy by now?

I have experienced wonderful sisterhood this week working with the other women to help our friend.

I have been totally blown out of the water by you folks.

The whole experience has given me new hope — in making and keeping friendships, in maybe being able to work more, in learning I can do things I didn’t realize I knew how to do. I thought I was just going to volunteer a few hours to get things going. Just shows to go ya.

I tried to make our group of Feisty Sisters an Apology-Free Zone, because there were always comments like, “I’m sorry my typing is so bad, I’m having seizures,” and “I’m sorry I wasn’t around yesterday, I was only awake for four hours,” and “I’m sorry I couldn’t do my shift earlier, I was in the ER today.”

I guess that’s my “Lyme disease and MCS awareness month” note for this post. The above dialogue is a pretty good indication of what it’s like to be in a group of women with Lyme and MCS. We’re really sick, and we’re so used to it, and to people “not getting it” (and because we’re women), we think we have to apologize for ourselves all the time.

When I would remind the gals not to apologize,they would apologize for apologizing! People would “like” me saying, “Don’t apologize,” and they would apologize themselves, the next time. Somebody else would “like” me telling them not to apologize, too. Good times.

Okay, snipe away. I’ll see you on the other side.

-Sharon, the muse of Gadget, and Barnum, SDiT?

P.S. Don’t worry. Barnum still knows what a clicker sounds like. We’ve been doing a fair amount of clicking-from-bed all week.

QuickPress: Clarification

Hi.

I am a bear of very little brain these days. I left out part of my instructions on the other blog.

Apologies!

I have fixed it, and it should be clearer now. Check it out.

If anything still isn’t clear, feel free to ask me any questions here or there.

Thank you!

-Sharon and sleeping Barnum


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