With the end of May, we wrapped up a great month for lupus awareness. Events were held throughout the country in support of Alliance for Lupus Research(ALR) and people affected by lupus. Just a few of the events that took place during Lupus Awareness Month:
5/10 Dine for a Cause at Trattoria Amici – Glendale, CA
5/12 Tory Burch Shop for a Cause – Chicago, IL
5/14 Seattle Walk with Us To Cure Lupus – Seattle, WA
5/17 Collaborating for a Cure Reception – New York, NY
5/21 New Jersey Walk with Us To Cure Lupus – East Rutherford, NJ
The ALR hosted our annual Collaborating for a Cure meeting, where ALR-funded scientists discussed their current research and exchanged ideas about possible future areas of study. At areception held on May 17, we celebrated their achievements as they help us lead the way to a cure with their innovative research.
On World Lupus Day we launched our Get In On It campaign and people everywhere have joined us in the effort to spread awareness and rally behind our mission to find better treatments and a cure for lupus. Visit our Get In On It page to see why ALR supporter Addy Batiquin and ALR-funded researcher Dr. Earl Silverman are In On It. Get In On It on our Facebook page and help us as we continue to spread awareness and raise crucial research dollars until we find a cure.
Today this came across one of the disability support email lists I am on. Given the onset of heat and high humidity, at least here in the South, I thought this might be worth a wider read.
I’ve changed all the names/references, but this is from someone local whose son is on the Autism spectrum.
So, just as dehydration can be a serious concern, so can over-hydration.
I’m posting this in the hopes that nobody else will have to go through what we did this past weekend.
I had to take Billy to the ER on Friday. He was admitted because his sodium levels were at life threatening levels (111, where the range is supposed to be 135-140). That morning he vomited stool, and then kept vomiting, so his gastroenterologist told us to go for a KUB in case he had an intestinal blockage. They thought they saw a “loop” in his left upper quadrant but weren’t sure if it was the large or small intestine. We were waiting to find out what to do next, but he was vomiting non-stop at that point so our pediatrician told us to get to the ER. They ran blood and urine tests and that was when they discovered how low his sodium levels were. The doctor told me the lowest he’d ever seen was 115. We spent 9 hours in the ER, had a CT scan of his brain and abdomen, and then he was admitted to the hospital.
He’d been drinking HUGE amounts of water for about 3 months, apparently because if you do, it gives you a “high”. (We thought it was because he also eats huge amounts of salt whenever he gets the chance – I have to keep it locked up but sometimes family members forget!) We also thought he was drinking so much because he has so much trouble with constipation. Apparently there was so much fluid in him, it caused the brain to swell, which is what started the seizures. The neurologist had put him on Trileptal, the week before, and told us to increase the dose last Monday. His therapists kept saying he didn’t seem right, but we attributed it to the medication increase, and figured he just needed time to adjust to the higher dose. On Thursday, his 18th birthday (and the day before the crisis), he had another seizure in the morning and I took him in to the neurologist. I was somewhat surprised to see he had gained 10 lbs in 10 days when he hadn’t been eating much, and stated this to the doctor. He said it was probably just an error reading the scale the week before. I insisted it wasn’t, because he had weighed 119 at his pediatrician’s office too, and this was the exact same scale. Nevertheless, my concern was dismissed.
That night we noticed Billy was twitching right before dinner. After dinner he began non-stop hiccupping. His stomach was distended and tight as a drum. At 10:30pm, he was still hiccupping, so I called the neurologist on call, after googling “seizures and hiccups” and finding that it is a symptom of myoclonic jerks. She told me to administer diastat, which helped calm things down.
I am just glad we got to the ER when we did. Had we delayed any longer, I might be telling a different story.
I did want to say that our experience at <local small hospital> couldn’t have been better, once we got past the admissions person at the ER, who didn’t seem to realize the urgency of his situation. She left us standing there for 15 minutes while she did what appeared to be routine paperwork for somebody else, even though our pediatrician had called ahead to say we were coming in. Billy had vomit all over him, (the ride over in the car only worsened the situation) and I felt there was no excuse for that. (Knowing what I know now, I should have just called for an ambulance.) Anyway, once we got past the front desk, they were absolutely wonderful. Billy was admitted to an adult ward since he’s now past the age of 18. Luckily my husband had mentioned to me a few days before that I should keep his guardianship paperwork with me. They didn’t know much about autism on the adult ward, but were respectful of my knowledge of my own son and his medical conditions, and were wonderful with their interactions with him. The nurses and doctors were very kind. The nephrologist who treated him there, Dr. Jason, will be taking over Billy’s case at his adult practice. (It seems so strange to me that one day he’s considered a child, and the next day he’s an adult.)
The moment we came home, the first thing Billy did was go to the cabinet to get a glass out for some water. So this is something we are going to have to watch carefully, and I will be weighing him every day. Although the doctor said we don’t have to restrict fluids (they had him on 1 liter per day while hospitalized), we are going to try to keep him at no more than 2 liters a day for a while.
- Autism is More than Just a Walk (chicagonow.com)
This arrived in my mail from a fellow dog-rescuer. Gigi should be sainted, quite frankly. Anyway, if you’re in the LA area and are looking for a companion, or know someone who is, please contact Gigi. Or contact me and I will put you in contact with her.
Update: So I asked Orbitz to remove my account. Delete it. You know, take my data off of their systems and make my account go away. You can see the original request below. You can also see their rather idiotic reply.
So I asked again after writing this blog entry below. This time they “forwarded my request to a supervisor”
Subject Cancel Account! Discussion Thread Response Via Email (E-mail Customer Service) 05/28/2011 11:13 PM Dear Orbitz Customer,
Thank you for contacting Orbitz.
I understand you wish to delete your Orbitz account.
I have forwarded your issue to a supervisor. They will review and respond as soon as possible. I apologize for any inconvenience caused and appreciate your patience while this matter is examined. When we do learn of a problem, Orbitz takes immediate action to prevent any future disappointing experiences for our customers.
Orbitz Email Service Team
When you Orbitz, you know!
Oh, and don’t think for a minute that “her” name is “Cara Simpson.” Orbitz email customer service is in New Delhi, India.
Anyway, I waited to hear from the “Supervisor” about this. Guess what? Right. Still unwilling to actually remove me from their systems.
Response Via Email (Athena) 05/29/2011 02:41 PM Dear Orbitz Customer,
Hope this email finds you well.
Thank you for your detailed follow up e-mail. We regret your continued disappointment.
It is my understanding that you wish to delete your account with Orbitz.
Deleting the account regrettably that may not be possible but what we did was that we locked the account.When we lock/close the account rest assured that there’s no further access of information.
Again, don’t believe that “her” name is “Athena.” Customer service supervisors are in the Philipines though, not India.
So the best these people can do is ‘lock’ my account so that I can’t access it? Um, that’s just failure on all levels.
Orbits, you folks really need to figure this out. It is certainly possible to remove someone from your system. Just because your outsourced, $1/day “customer service” people can’t figure it out doesn’t mean it can’t be done. And not giving me an easy, straightforward way to delete MYSELF is double-fail. What am I, your hostage? Once I’ve signed up with Orbitz I can never change my mind a leave Orbitz? You really think your service is that good that I can never live without you?
Get it right folks. Fix this.
I supported the Stop Beck campaign for a long time by writing emails, sending tweets, etc. to companies that advertised on Beck’s freakshows. It worked. So many advertisers dropped him that even the Rage and Bigotry Circus Faux Newz had to finally give it up and cancel his rubber-room hour.
When The Drop Fox campaign started up, I of course thought it was a great thing. I detest encountering Faux Newz on televisions in public places — especially places where one is a captive audience like Doctor’s waiting rooms, etc. I always ask them to change the channel or turn it off, and consider not using Fox as their background noise permanently. It is making people stupid.
But I digress.
The Drop Fox campaign is doing great work. Fighting an uphill battle to get the truth out about what Faux Newz really is: Right Wing Propaganda and Lies. Oh, and Xenophobia and bigotry. Lots of that too. So they asked Orbitz to stop advertising on Faux. Orbitz had always been a “supporter” of LGBT community, and marketed directly to them and quite frankly made a pile of money off of them. So it seemed (and still seems) reasonable to ask them to actually support the LGBT community and not support a network that promotes intolerance and bigotry. You’d think.
But not only has Orbitz refused to stop supporting Faux, but they have doubled-down on the stupid by issuing the following statement:
And then just yesterday, Hoyt issued an response letter saying “Our tone … is the result of dealing with the tired tactics of these shady so-called non-profit fringe groups like the one that attacked Orbitz.” Wow. Shady, fringe groups? Really?
Wow. Shady fringe groups. Interesting way to play this, Orbitz, but ok. Have it your way.
I’ve said I have a zero tolerance policy for racism and discrimination and bigotry. I’ve said it a lot. I mean it. No, really. I MEAN IT.
So off I go to Orbitz to delete my account. I told you I mean it. But I can’t seem to find any way to delete my account. Huh. Weird. There must be a way. I just can’t find it. So I fill out a customer contact form and inform them of what I want, and why.
Straight up and to the point. I want my account cancelled and all my data removed from their systems. I should have that right, right? Apparently wrong.
Dear Orbitz Customer,
Thank you for contacting Orbitz.
I understand you wish to delete your Orbitz account.
In Orbitz we do not have an option to delete an account once it is created. However, you can remove any card information or billing information from the account.
To delete the credit card information from your billing profile, please follow these steps:
1. Go to ‘My Account’ http://www.orbitz.com/App/ViewMyStuff.
2. Click on the link ‘Billing Information’.
3. Click on the link ‘Delete.’
4. Click on ‘Save’ which is at the bottom of the page.
To edit your billing profile, please follow these steps:
1. Go to ‘My Account’ http://www.orbitz.com/App/ViewMyStuff.
2. Click on the link ‘Billing Information’
3. Click on the link ‘Edit this billing profile.’
4. Make the necessary changes and click on ‘Save’ which is at the bottom of the page.
However, you may also get your Orbitz account locked by calling Orbitz Customer Service at (888) 656-4546 from the US and 001-312-416-0018 from outside the US. Our Customer Service Agents will be able to assist you more efficiently on the phone.
Sophia Robertson Orbitz Email Service Team
Really?? So once you create an account at Orbitz, you’re theirs for life. No way to get removed. No way to have your data removed. The best you can do is to remove the credit card you have on file with them. (Guess what? The card they have on file was already cancelled.)
Sorry, but this is unacceptable. Maybe it calls for some new legislation, but as a customer, I should be able to have my information deleted from their systems upon my request.
This isn’t over. Not by a long shot. I have every intention of getting my information deleted from Orbitz’s system. I most certainly won’t be using Orbitz any longer. They have shown me that they do not wish to listen to their customers so I don’t plan to hand them any more of my money.
- Not Cool, Orbitz! (perezhilton.com)
- Orbitz Snubs Media Matters’ ‘Drop Fox’ Campaign: ‘We Aren’t Going To Engage In That Fight’ (mediaite.com)
- Tell Orbitz It’s Time To Drop Fox (ynative77.wordpress.com)
- GLAAD: ‘LBGT groups urge Orbitz to pull ads from Fox News over anti-gay rhetoric’ (miamiherald.typepad.com)
- Media Matters Targets FOX Over Anti-Gay Content By Going After Their Advertising Income (lezgetreal.com)
I’ve said it before and I will say it again and again and again: It’s not okay. Here, let me gut-punch you.
So stop it. I’ve said I will have zero tolerance for racists and birthers (same thing as far as I am concerned) and all the other bigots knuckle-dragging their way through this world and refusing to join a modern, civilized society. Now I’m adding this to my lists of things I simply will not tolerate.
So if you think it’s funny, or cute, or clever to call someone retarded, or a retard, it’s not. It never was. And fancying it up to call them a Foxtard for watching Faux News, or a Libtard, or any other kind of -tard doesn’t make it any more acceptable to me, or any more clever or funny. It’s the same thing. It reminds me of how my Grandmother used to use the word “Niggra” because it finally became clear to her that she couldn’t use the word “Nigger” anymore, but she still couldn’t stand to treat black people like, well, people. We all knew exactly what she meant. I hated it then and I hate it now.
It makes you look crass and insensitive and like the kind of person who preys on people that may not be able to stand up for themselves. It makes you look like the kind of person who pushes others down to make yourself look taller. Who preys on people’s weaknesses because you are too much of a coward to pick on someone your own size. But guess what? We see exactly who and what you are when you do this. More clearly, in fact.
So, if you want to insult someone’s intelligence, then might I suggest that you actually apply some of your own first? Be creative. Be funny. Be sarcastic and snarky. Be as mean or insulting as you think you need to be. But don’t use the word ‘retard’ or any of its more modern forms or I will have something to say about it. To you directly. In public. You won’t like it. I won’t care. If that means we can’t be friends then you’re really not the kind of person I want to be friends with anyway. I’d rather have friends that treat others with respect and dignity and compassion. And yes, you can still insult someone and treat them with some respect and leave them with their dignity. So learn how.
With what seems to be a growing awareness of childhood lupus, we at the Alliance for Lupus Research (ALR) have been placing an increased effort into understanding more about this disease as it applies to children. In our recent Lupus Research Update (LRU), we examined the complexities of lupus as they relate to children, and the various aspects which make how it affects them different than for adults.
We continue this discussion in our latest podcast, Lupus in Children. In this podcast, we speak with Dr. Barbara Anne Eberhard, who specializes in pediatric rheumatology at Cohen Children’s Medical Center of New York, part of the North Shore-Long Island Jewish Health System. Dr. Eberhard speaks candidly about some of the considerations in treating children with lupus, and gives additional insight into a facet of this disease that we are gaining an increased understanding of every day. Please click here to listen to Lupus in Children.
Subscribe to our FREE podcasts on iTunes and new segments will be automatically downloaded for you, or you can also check back with the ALR websitefor the latest in lupus news.
Leading the way to a cure.
*This podcast is meant to be informational and any individual who is being treated for lupus should consult their healthcare provider to determine the therapy that is right for them.
- World Lupus Day (oneblueeye.me)
- FDA Approves Benlysta for Treatment of Lupus (oneblueeye.me)
- Glaxo, Human Genome Sciences Win EU Backing for Lupus Drug (online.wsj.com)
This is great news for SLE sufferers in Europe.
By Ben Hirschler LONDON | Fri May 20, 2011 9:55am EDT (Reuters) – The first new treatment for lupus in a half-century was recommended for approval in Europe on Friday, offering a new option for patients and underpinning multibillion-dollar sales expectations for its makers.
Of course it’s all about the multi-billion dollar sales, and not about helping people suffering from a debilitating disease.
And finally …
The Mayonnaise Jar
When things in your life seem almost too much to handle. When 24 hours in a day is not enough; remember the mayonnaise jar and 2 cups of coffee.
A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and start to fill it with golf balls.
He then asked the students if the jar was full. They agreed that it was.
The professor then picked up a box of pebbles and poured it into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls.
He then asked the students again if the jar was full. They agreed it was.
The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else
He asked once more if the jar was full. The students responded with an unanimous ‘yes.’
The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand.
The students laughed.
‘Now,’ said the professor, as the laughter subsided, ‘I want you to recognize that this jar represents your life. The golf balls are the important things – Family, children, health, friends, and favorite passions Things that if everything else was lost and only they remained, your life would still be full. The pebbles are the things that matter like your job, house, and car. The sand is everything else The small stuff.
‘If you put the sand into the jar first,’ he continued, ‘there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you.
‘So, pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out to dinner. There will always be time to clean the house and fix the dripping tap.
‘Take care of the golf balls first — The things that really matter. Set your priorities. The rest is just sand.’
One of the students raised her hand and inquired what the coffee represented. The professor smiled. ‘I’m glad you asked. It just goes to show you that no matter how full your life may seem, there’s always room for a couple of cups of coffee with a friend.’
I know at least one friend that I owe a couple of cups of coffee to, and I intend to have them.
What about you?
Support Lupus Research. Really. Don’t make me stop this car and come back there.
Today is World Lupus Day
with Alliance for Lupus Research
On World Lupus Day, join the world’s largest private funder of lupus research as we kickoff Get In On It, an exciting new campaign!
ALR funds the most innovative lupus research in the world – Get In On It will utilize the most innovative communication technology in the world to help spread awareness and raise critical research dollars until we find a cure.
Visit our website. Follow us on Twitter. Like us on Facebook and tell us why you’re in on it – your story may be featured on our website!
- Erin Kotecki Vest on Living With Lupus (blogher.com)