Tony Tobin of the U.K. runs a Yahoo! health group that is information only about CRPS/RSD. He waxes and wanes as to when and what he posts. January saw only one message -- but February has been a flurry of activity. He doesn't judge the material he passes on although it is evident that most of it has passed through his savvy intellectual filters. He does not have CRPS/RSD but watched and learned and then became a virtual sponge for knowledge after his granddaughter was "afflicted."
So that's Tony.
He knows, it sometimes seems, everyone in the CRPS/RSD "community." He posted his 17th message this month about one of those people.
It is with deepest regret and great sorrow that I post this obituary. I have known Andrea and her family for many years and I am finding it hard to find words to express my feelings. So for now please just accept her obituary as my way of saying 'God be with you.'
Cutting through the blither-blather, here is the part that matters:
Andrea Lynn Gianopoulos
Andrea Lynn Gianopoulos, 26, of Lancaster, died unexpectedly on Wednesday, February 11, 2009 at Hospital San Jose in Monterrey, Mexico.
Andrea also moderated a Yahoo! health group, fighting fire with fire (and founded one other, of which, I think, she was the most proud --Fighting 4 Us ). In February 2008, she wrote a welcoming note:
Hey everyone out there in RSD land! I wanted to sent out the first
email of this group to get things going. I know there aren't a lot of
people in this group as of yet, but I want you guys to know that you
can invite ANYONE you want! The more people who know, talk about, and
read information on RSD, the better. So get talking people! Advice,
jokes, interesting news, WHATEVER! The more emails the better too!
Alright I'm going to get going but I will be here as your happy
moderator, ready to answer any questions or concerns. Till next time,
keep on Fighting!
Your happy moderator
I am not proud of it but groups like this one are as fingernails scratching on the blackboard. In general, I believe that people in the kind of diminishing-to-the-self constant pain that folks with CRPS/RSD live with should not gather in groups greater than three, and probably should be supervised. Ankle bracelets. Muzzles.
Nothing good can come of the congregation of either drugged out Pollyannas who believe in silver bullet cures (One day, they'll find the cure for this Beast, this Monster! Fight on! Rah! Buy a bracelet! Use Epsom Salts to draw out the poison! HBOT! Sign a petition! Use lots of exclamation points and emoticons!) or bitter bitter sufferers who are not yet resigned to their intractable pain. They curse a lot, threaten suicide, and emotionally blackmail everyone in the group. Eventually.
It's sad and I see it happening in almost all CRPS/RSD support groups. This may be silly, but I have some tonal and linguistic red flags to which I try to pay attention: "scripts" instead of prescriptions, "perks" instead of percocet, spread of the urban legends about the purportedly high suicide rate among "RSDers" (many doctors contribute to the myth, unfortunately, including one of the foremost experts on the disease, also the balletic and oft interviewed doyenne, Cynthia Toussaint, now predictably stricken with fibromyalgia.).
Choo choo! Toot toot tooot! Derailed train of thought, once again.
I, The Retired Educator, do hereby lay claim to the Fog of Anesthesia, in the name of Isabella and Ferdinand, Catholic Monarchs of a united Spain...
Another of Andrea's final posts is so typical of the harried sense of anxiety that chronic pain creates, as the days' sufferings accrete and fold, fold, fold over and into themselves, like air into a delicate batter. What? I can't help it... the Food Network is on.
She sounds like such a sweet young lady, determined to help anyone she can, but a bit lost, too. Her train of thought is about as clear and straightforward as mine. Her expressive style reminds me of a recent blog post by the Doc at Ten out of Ten, wherein he classifies patients by their communication acumen. Thus far, he has exaggerators, ill-depicters, stoic [doods], vagueurs, wanderers, hystericals, no/buts, and the positive-review-of-symptoms.
Choooo! Andrea paid no attention to the perils of internet overinvolvement -- perhaps she had never been burned or taken under the bridge and beaten by trolls; Could it really be that she was just unwaveringly good, unspoiled, a true optimist?
Yesturday, I got a message from a man who really wants our help. I
will not tell you his name, but I will tell you that his girl friend
is really...REALLY bad off. In the first email he just sounded
angry, and said that the local group he belong to didn't help. At
first I thought he was saying he was in pain and it was my group
that didn't help him. I sent him a rather abrasive email reminding
him that if they were saying it was my local group, that I needed to
know who was taking the name of Fighting "4" Us and just using it to
Well he emailed me back. He told me that it wasn't my local group,
but that it wasn't good for her. He said this was for his girl
friend and he was just trying to find help. He said her PCP has
dropped her, and for some reason her doctor won't perscribe more
scripts. She has thirty days till the script runs out and you all
know what that means. She's going to go through major withdrawl, and
is already talking about suicide. I can't tell you the man or the
woman's name, but can you all do me this: remind me where your from?
If you're close to their area maybe I can get them to talk to you.
I suggested that she join this group, but that was in an email I
just sent so I don't kow if it will help. Just tell me where you
live and I'll see what I can do. Because we want to help our fellow
RSDers...right? Thanks all and I hope to hear from you soon...
Your always fighting moderator,
Do you remember her obituary, way up above this word mess? Do you remember where she died? Yes, that's right. At San José Hospital Technological of Monterrey, Monterrey, México.
The research being conducted on the ketamine coma is taking place primarily in two places: at the San José Hospital in Monterrey, and Saarbrueken, Germany. Recently there was a mild uproar over a patient septic from MRSA (began as a pneumonia, which is pretty common in the treatment, but -- being MRSA -- didn't respond to antibiotics, then went systemic) -- that was at the German site.
Now we have this in Monterrey.
I'm just sayin'.
Because of the infections I have developed over the past year and a half, I had to drop the notion of either getting an SCS or a "pain" pump (intrathecal pump) or going for the gold and attempting to get on the ketamine coma waiting list (word is that it is a 2-year wait at present). Now, of course, I see horror-stricken faces when I broach the topic to my doctors -- the very idea that I would want to introduce more foreign bodies that might invite bacterial colonisation appalls them.
And my rumblings about the coma? They never really took me seriously. The sepsis of one patient and the death of another may be the death knell for this research.
And I don't know how I feel about that. It has been touted as a possible cure, and I believe 14+ people have gone into longterm remission. Here's a short blurb about it that I pulled from the informed consent paperwork for folks considering hopping on an air ambulance and flying off to Mexico:
The purpose of this research is to find out if an anesthetic called Ketamine
helps in the treatment of the Complex Regional Pain Syndrome (CRPS)...
If you agree to be part of this study, you will be given two drugs: Ketamine and
Midazolam that will put you to sleep. You will be asleep during five days by
means of continuous infusions (a quantity will be given continuously but slowly)
of these drugs. At the end of the five days the drugs will be stopped and you
will wake up. After the treatment you will take several tests to see if the
treatment worked completely, partially, or not at all. You will have more tests
every certain number of months during two years in order to observe how long the
effects of the treatment last.
On January 18, 2009, Andrea wrote in her MySpace blog:
Well as many of you all know by now I will not be going to Germany in February, but I am going to be going to Mexico! I will write in here and at the Fighting "4" Us myspace site (www.fighting4us.com) about it as much as I can, and I should have wrote in this more, but there was so many feelings, so many things that had to be done, so many things to think about that I just didn't have the time or energy to come online and work through this. I was working on Fighting "4" Us stuff, however, but more behind the scenes then anyhing else. But OH how wonderful our site will be when I get back. There will be places for members to come on, it will have it's own blog....But that's just a preview of all the good things that will happen. But for now, some thoughts on going to Mexico. When I first found out that I would be going to Mexico, and when, I was overjoyed. I'm still overjoyed....but now the fear has set in. I have so many things I want to be and do...I have an entire list of them. I'd rather not take up so much room now, but when I start to check them off (and I will) you will hear about it. I'm just "a ball of nervous" as someone I know said. I guess that's all I have right now. Blessed be!
Someone has posted a banner on her MySpace page that reads: "Andrea doesn't hurt anymore."
Bless her heart.