November is making its presence known this morning in the Virginia Mountains. The air has passed "brisk" and moved right on to "cold" in a matter of hours, and the leaves that were taking their time about dropping to earth apparently made the leap in last night's wind and have accumulated in a waste-high pile in my front yard. I wish I was exaggerating. That's the price you pay for living on the side of a wooded mountain — not that I'm complaining.
Thanksgiving is literally around the corner now and I usually find myself in a reflective mood this time of year, thinking about the things for which I am thankful. I watch the leaves fall while I scratch at my flaring legs, and then I look at the little pile of skin cells that have accumulated on the floor, and that changes the perspective a little. Like the trees, my skin is changing with the approach of winter, and like the trees it will be less attractive until the warmth (and humidity) of spring returns.
I'm putting the finishing touches on light booth 2.0 — the next incarnation of the original booth I built six or seven years ago. It was a quest for information on how to build one that led me to FlakeHQ and Ed Dewke, and for that I am thankful. Ed's example inspired the creation of PsorChat, and we've been around for more than 5 years and have more than 1,200 members — for that I am very thankful. The most satisfying thing for me is to read a new member's posting that he/she didn't realize anyone else was going through the same sorts of things, and that they no longer feel alone. That's what it's all about. -Rob
I had to sit down for a little while this afternoon [11/8/2006] to think about why I run PsorChat. This introspection was precipitated by something that happens infrequently, but enough to cause me to say “here we go again.” A PsorChat member became insulted because in an e-mail exchange it was revealed that the member’s posts were being moderated. This revelation caused the member to unsubscribe after a brief but terse e-mail to me.
Somewhere in the archives of PsorChat there’s an explanation of why new members are moderated, and here it is in a nutshell: For the first three or so years we were up, we had a lot of trouble with spam on the list. I didn’t want to moderate every posting that went up, and after a while Yahoo! changed the options so only new members can be moderated. After a while, the moderator (me) can change that status. I usually do this after a new member has posted several messages and shown a pattern of responsible posting, but if something is going on with work or life in general that distracts me from that, it could be weeks or months before someone comes off moderated status.
I don’t advertise the policy, and I don’t alert people when they have been taken off moderated status because some people will try to beat the system. The less info they have the better. One poster sent several legitimate-sounding messages one day to test the water. I was at the computer and was approving messages as fast as they were put in the queue, so this person thought messages weren’t being moderated and started posting ads for a porn site. I banned the member and deleted the porn postings before they ever made it onto the list or into anyone’s e-mail. This sort of thing happens anywhere from once a month to several times a week.
I run a full-time business, and recently I’ve had to devote a lot of my attention to the care of two family members who are in declining health. I spend large portions of each day attending to their needs, and large portions of each night keeping my business going. I spend what time remains with my wife. On all but the rarest of occasions, I still manage to keep up with the messages that need moderator approval on PsorChat. I take my laptop with me on vacations and business trips so I can make sure there’s not a backlog of messages that need to be approved and posted.
Today I thought about why I started PsorChat, and why I continue to do it. I don’t make any money from it, and in truth the productive time I lose moderating messages is money lost as far as my business is concerned. I could stop moderating entirely and let the board fill up with spam, but that would defeat the purpose.
When my P first came on 18 years ago, I would have loved to have had a place like PsorChat to go to exchange ideas and information with other flakers. At that time, I felt like I was the only person in the world with the disease, and my options for contacting others were limited to the phone and snail mail, or if I was lucky I might find support group in my area that met once a month. There weren’t many places I could turn at 3:00 in the morning when I was feeling low, and while my friends would talk about it with me, they always had that uncomfortable look on their faces.
FlakeHQ was the first place I found where other flakers shared their experiences, and from that model I hit on the idea to start PsorChat, so people could exchange ideas in almost real-time on the internet. And the fact that I got goose bumps just now as I wrote that is probably the reason I still do it — this is a labor of love. I am proud that this is a place where people share their stories, debate ideas, and bounce theories off one another. I’m also proud that we’ve finally got a system in place that seems to be keeping out the junk, which gets in the way of real discussion sometimes.
So if you have left
the fold because your messages were moderated, come on back. We
miss having you around. Volunteer to help with the moderating if
you don’t like the way I’m handling it. The hours stink and
you’ll get no thanks or pay, but it’s rewarding in other ways.
Unsubscribing only deprives you of the company of 1200+ others
who know what you’re going through — and it deprives us of
hearing what you have to say. -R ob
We passed our five year anniversary on July 10, 2006 with no fanfare or even an email to mark the occasion. In that five years we’ve grown from 2 members to 1,151 as of today, and our numbers grow daily. When the board was launched, the treatment options for P were steroid creams, light boxes, coal tar, and Dovonex. Today we add to the list all the biologicals that have come out in recent years, such as Humira and Enbrel, and new evidence that lends credence to the dietary/environmental theories of this perplexing condition that binds us together in this little community.
It had been my hope to roll out a companion site for PsorChat at the five year mark, but fortunately or unfortunately work has kept me busy enough that I haven’t been able to devote the time and energy it will take to get that site ready for launch in the foreseeable future. If that changes you will be among the first to know it.
everyone. This is your community; thank you for making it what
it is today. -Rob
It’s been a busy
quarter at PsorChat. In February we passed the 1,000 member mark, and as
of this writing we have 1,034 members. Here we are five months shy of
PsorChat’s five year anniversary, and at the current rate of growth we
could have nearly double this number of members in a year.
I am writing this Dec. 28 and taking advantage of the lull in work activity to finally get caught up on things. It’s been a busy year for me, which seems to be the way I’ve started this column for the past couple of years. It’s also been a busy year for PsorChat. I was just looking back at my update form last year to see how many members we had then: 510 on Jan. 2, 2005. On Dec. 28, 2005 we have 936 – 426 more than we started with for the year. This seems phenomenal to me. In just over seven months we will be celebrating the fifth anniversary of the launch of PsorChat, and I think each year we’ve doubled our membership over the previous year. It’s possible that this time next year I’ll be reporting that we have somewhere in the neighborhood of 2,000 members if that trend continues. It’s good to know that so many people are finding us and are using the forum for support, research, and a place not to feel alone with the disease.
In the past I’ve asked members to give me some suggestions for what changes they’d like to see at PsorChat. There was some interest for a while in actually using the chat feature that’s available through Yahoo Groups, but that has waxed and waned over the years. I put up some links on the PsorChat web page for information on various topics of interest, but haven’t received much feedback on that to know if it’s been useful. I’ll continue to solicit the input of members in 2006 and am mulling some changes that may take the form of a companion site so as not to disrupt the continuity of the existing forum. That’s all in the idea stages right now and I’ll provide updates as things develop.
As is customary in these year-end messages, I wish all of my fellow flakers a new year full of exciting developments in the P community, and the hope that within our lifetimes the need for this forum will disappear, along with the disease.
Happy New Year everyone.
PsorChat has been hopping recently. Our membership swelled when Yahoo! made it's transition to the newer look a few months back, and I can't figure out if this is because more people were able to find us or if Yahoo! somehow added people into the group through other means. Our membership jumped from approximately 400 to 700 after the transition, and today we are over the 800 mark. I remember being impressed back in 2001 when we reached 20, so to see that we have more than 800 active members now is understandably exciting. I'll have to figure out some way to commemorate it when we reach 1,000.
Traffic on the list has been very interesting lately. I was thinking about it this morning as I approved some new-member postings and saw something about a topical zinc concoction. Back in 1990 when I first discovered I had P, zinc was one of the things that was receiving a lot of attention from the P community as a possible treatment. I dutifully applied zinc oxide to my spots for a while before I determined that it wasn't the thing that was going to work for me and moved on to other topicals. As I reflected on this I started thinking about the cyclical nature of the treatments we use for this and other maladies, and the various schools of thought that exist within our little community. In my mind, I have divided these schools of thought into three groups.
One group is what I call the Cutting Edge Group. These are the people who are trying the systemic/biologic drugs like Enbrel, Raptiva, and Amevive. Their experiences, which they dutifully report on PsorChat, help others of us who are using the more traditional treatments and may be on the fence about going the biologics route.
Admittedly, I fall into this latter group, which I think of as The Traditionalists. These are the ones among us who use the topicals and various UV treatments with varying degrees of success.
The third group is the Alternative Therapies group. These are the folks who shun the drug route and take the more holistic approach to treating their P. Some follow strict diets while others try the various herbal remedies that are out there, all with varying degrees of success.
I don't think any of us fall wholly into only one group — I prefer to try the topicals in combination with other therapies that are more holistic in their approach, such as exercise, meditation, and the occasional herbal or "natural" remedy. Ed is one of the few people I know who has gone almost all routes, from the holistic to the cutting edge. He's a renaissance man in that and many other regards.
The existence of these differing schools of thought speaks to the nature of the disease itself, and the fact that what works for one of us often does not work for another. I've seen posts chiding us for not using what is "obviously" the method that works. In these postings I think the authors fail to acknowledge is that it works in their cases, but may not be the best choice for someone else for a variety of reasons.
Pagano's diet may be the answer for some of us, but there are many of us for whom it's not a good fit because of anything from dietary restrictions to a lack of the desire to adhere to such a strict regimen. Some of us may not have the time or inclination to apply topicals every day, in which case systemics may be a better solution. For others, the possible risks associated with the systemic/biologic treatments may outweigh the discomfort of dealing with the disease itself.
Just some food for thought on a hot August afternoon. -Rob
The summer is heating up and so is the world of Psoriasis Activism. In April the NPF sponsored a Hill visit for 60 members to visit the Capitol and speak to their representatives in an effort to encourage them to vote for more funding for Psoriasis research. Around that same time, a member on PsorChat came to my attention through several channels for his efforts to increase psoriasis awareness on the Hill, and since then Mike Paranzino's Psoriasis Cure Now! has been a steady source of information (for me, anyway) on the latest developments in the battle to set the record straight and generate more interest in finding a cure. Kudos to Mike for making this a full-time job.
People continue to report success using Enbrel, which was recently expanded by the FDA to cover the treatment of PA and possibly even RA if the ad I saw last night on TV was any indication. In addition, there's been a lot of interest recently in UVB treatment at home. I attribute this to the onset of warm weather in the U.S., where a majority of our members are based, and the subsequent reduction in symptoms many of us see after exposure to the sun.
I was stunned today to see that the membership has grown to 775. Shortly after Yahoo! made changes to the format of the groups I saw a dramatic increase in membership, but I attributed it to some kind of software glitch. The numbers have remained constant, however, so I have to believe we got a significant influx of new members, and many of them have become regular contributors. I want to take a moment to welcome all the new members and thank you all for your contributions to this little online community we've developed.
I continue to look for new ways to improve the community and am open to suggestions. In the past we've discussed using the chat feature of the group to actually have interactive chats, but so far no one has taken advantage of that — at least to my knowledge. This is your community, so let me know what you'd like to see from it and I'll do what I can to make it happen. -Rob
Back in January I resolved to be more involved with the day-to-day business on Psorchat and to take better care of my skin and my health overall. I've done okay on the latter, but a very demanding work schedule has made it nearly impossible to be more involved with Psorchat than to approve pending messages from new members and occasionally weigh in when something catches my eye.
That said, I see this as a good thing.
When I stared Psorchat in July of 2001 I envisioned an online community where people could log in, share ideas and stories, and generally support one another. There were various starts and stops along the way. Some people had trouble embracing the support aspect of the group, while others took advantage of the vulnerability of those hoping for a cure. Still others targeted the group with spam, whether it was related to the topic or not.
After almost four years, Psorchat has become the online community I envisioned, and it's been my inability to be as involved that's brought me to that conclusion. I used to have to weigh in a few times a week to settle a dispute or warn everyone about a scam someone was trying to pass off on the group.
I haven't had to do either of those things in a very long time.
The approval process for new members has almost eliminated spam and hoaxes, although one occasionally still gets through and probably always will. Best of all, the support aspect of the group has really taken root and the community that has grown here has become very much self-moderating. I've become obsolete as a moderator, and I couldn't be more pleased about that development.
My best to all 558 of you who are currently members of Psorchat. Thank you for making it what it is today. -Rob
Jan. 2. We've just finished taking down the Christmas decorations and have
tossed the carcass of the Frazer Fir into the woods beside our house as
a lesson to other conifers: Stay the hell away from us; we're dangerous.
In addition to scaring off evergreens, our former Christmas tree
provides shelter for some of the songbirds we work so hard to attract to
our property, and later bugs will break down the wood, making nutrients
for the soil before they themselves become nutrients for a host of other
critters. It's a good deal
all around, except for the tree, which gets very little from the whole
the tradition of undecorating and cleaning the house, we've been
thinking about our resolutions today. My wife, never satisfied with the
also be starting on a resolution I make every year: I'm going to take better
care of my skin.
nearly every one of us, I hit a wall with my P where I just get sick and
tired of even trying to do anything about it. As a result I try to
ignore it and just hope it will go away, and to some degree this
actually does work. Some of my spots respond to benign neglect, probably
because I'm not damaging the skin there trying to aggressively remove
plaques. Other spots demand my attention when I'm trying to avoid them
by erupting in a painful and/or itchy flare.
my resolution for 2005 is to take better care of my skin. I'm going make
a derm appointment for
sometime in January and see if this newest derm I saw back in October
for Kenilog injections has some new ideas for treating my old problem,
and I'll reinstitute my regimen of skin care while I'm following the new
regimen of exercise and healthy diet.
also be spending more time on the site than I have been lately.
Psorchat has grown to 510 members as of today, and that seems
fitting since 2005 is the 5th calendar year Psorchat has been in
operation (okay, I'm reaching). With getting married, buying a house,
moving, and starting a new job — all since September — I haven't had
a lot of spare time. Fortunately, our volunteer moderators have pitched
in when needed and I'd like to thank Mike Bailin and Ed Dewke for their
continued assistance and guidance in a variety of ways. Fortunately
we've become a very self-moderating group and there's really very little
need for me as a moderator anymore. I'm just here learning and coping,
like everyone else.
hoping 2005 is the year they discover the treatment option that works
The stats: As of July 9, 2004, we have 421 members — another new record. May 2004 goes on record for having the largest number of posts in
PsorChat's three-year history, and also goes on record as being one of the more contentious months we've experienced.
One of the dynamics of the group is self-moderation. Most of the time this works pretty well —
someone says something that's out of line or inappropriate, others take issue with it, and eventually things settle out. Once in a while it gets out of hand, particularly when Spam gets into the mix.
March-April and a
little bit of May 2004
The stats: As of today, May 15, 2004, we have 392 members on PsorChat — our highest ever. More people seem to be finding the site, either through FlakeHQ or through other channels in the P community. Since January 1 of this year we've had more postings than we did all of last year, or in the previous two years combined.
Ed and I were recently discussing (via e-mail) the growth of the list and the recent activity. Both of us were pleased that by and large the postings are genuine and the responses are helpful — a rarity when a list grows to size ours has, and especially when it grows quickly. I like to think it's because we flakers are genuinely interested in helping one another through the rough times, and in celebrating the little victories as they happen. I'll touch on both of those in more detail in a moment.
I had to revise this update after originally sending it to Ed because I'd been bragging about how few SPAM e-mails we had been receiving. We'd gone about two months without any Spam activity of noticeable proportions, and then the spammers must have been reading my e-mail because we got hit with four in one week. Worse than that, it triggered a spate of e-mails with list members sniping at one another and generally treating each other in just the way I had been saying we do not. It was a very disappointing time for me as the list owner.
Because of this recent bout of Spam, I've instituted a new policy on PsorChat. It's the only way I can see to make sure people don't join, try to sell something, and then unsubscribe. Effective today I'll be approving new member postings only — which means when someone joins they'll initially only be able to post after I read what they've said and approve it — hopefully weeding out some spammers in the process. If that proves to be too time-consuming or slows down postings too much I'll ask some of our established members to become volunteer moderators and lend me a hand. It feels rather big-brotherish to me, but this problem apparently needs to be addressed with something other than a stern warning on the new member message.
Getting back to the tough times and victories, I'll start with the victories: several members of the group are having good experiences with the biologics to varying degrees. Some folks are seeing dramatic near-remissions, others are getting a little respite from the itching and scaling and the pain from PA. Enbrel has been a popular one, and the word on the list about Raptiva is also good. I've seen some questions regarding the very nasty side effects some have mentioned reading about, but so far the only person to have a very negative experience on Enbrel that I know of is Ed.
I continue to sit on the fence about using a biologic myself. I'm getting married in October and would love to be able to have clear(er) skin for the honeymoon, and while my fiancé doesn't say it, I know she'd like that too.
The tough times have been a big topic recently. One of our group was referred to a rheumatologist by her derm in hopes of getting her onto Raptiva. The rheum was a sick, sadistic excuse for a human being, however, and he basically held this poor woman against her will while being verbally abusive and doing several other inappropriate things. She gave us a very detailed account of the experience and the response from the group was overwhelmingly supportive. She seemed ready to give up on doctors all together and hide from the experience, but people were quick to point out that what had happened to her was not the norm and that she needed to recognize her inner strength and fight for justice — for herself and so this pervert can't inflict this kind of abuse on anyone else. She has kept us abreast of the situation and we all wait anxiously to see some justice — for her peace of mind as well as for our own.
Spring got a late start after teasing us here on the east coast, so again I encourage you to get outside and shed — I mean show — some skin! -Rob
2004 goes on record as the busiest month we've ever had at PsorChat, and
our membership is also at a record 329 people as of this writing. Today
is March 1 and spring is definitely in the air here in the mid-Atlantic
region. People are breaking out the shorts and short-sleeved shirts and
I, like so many of us, find myself looking at my skin a little
self-consciously as I get ready for another season of questions and
off-hand remarks that aren't meant to be painful, but still sting a
As of this writing our membership on Psorchat has climbed to 301. It was 302, but I had to punt someone for trying to sell a product again. This happens less and less frequently now and I'm encouraged by that – perhaps the word is getting around that flakers aren't suckers.
Because of the holiday, traffic on the list was pretty light – the lightest it's been since Ed linked us up to FlakeHQ. Conversation tended to focus primarily on our favorite subject these days: biologicals. A lot of people are trying them with differing degrees of success. Like so many other treatment options, what works for one doesn't work for another. Reading first person accounts of the successes, disappointments, and side effects has been very educational for those of us on the fence about whether to try the needle.
With the cold weather pretty firmly established, conversation in recent days has turned to beaches and sun. Some folks are contemplating trips to exotic locations to get in a little combination therapy – sun and salt water. The relaxation factor isn't bad for the skin either. Other recent discussions have centered around diet and various herbal / nontraditional treatments that provide relief for some.
Right before the holidays there seemed to be a feeling of discouragement on the list. People were unhappy with the results they were getting, the treatments they were trying, the dermatologists they were seeing, and occasionally with others on the list. The new year seems to have brought a lot of people over to the optimistic site. Someone actually wrote recently that she believes there might be a cure available in the her lifetime.
Recent threads have also shown new commitment to trying new therapies, or being more diligent about the old ones. It's like the resolutions to lose weight and quit smoking; it's a new year and time to turn over a new leaf. I'm on the bandwagon, too, and like all of us I'm watching the news carefully in hopes that one day in the not too distant future the mystery cure will turn up.
And if it does, I might make an exception and let someone sell it on the list. -Rob
little group jumped from 150 to 230 since September, and with the new
blood came new topics for discussion. Ed started things out as usual
with the FlakeHQ discussion topic: Are
you going to try one of the new biologic drugs for psoriasis? Why
or why not? And when?
usual, the conversation quickly steered away to other topics, but this
one kept coming back again and again The biologics are a hot topic among
flakers because they offer some real promise for those who’ve had
limited success with topicals and other treatments – hopefully with
fewer risks of serious side effects. Amevive was discussed at length
since the manufacturer, Biogen, suspended manufacture of the I.V.
version of the drug in favor of a version delivered by intramuscular
weekly injection. Whether that injection can be done at home or has to
happen in a derm’s office has yet to be cleared up.
people discussed Soriatane and its less-than-pleasant side effects, as
well as Enbrel, the benefits of older treatments such as MTX, PUVA, and
emollients, and their related problems, such as skin cancer and the
much-discussed/much-feared liver biopsy.
effects were on the minds of a lot of people. The higher incidence of
cancer while using Enbrel made us all think of Ed’s recent ordeal
(well, made me think about it anyway, as I shifted uncomfortably in my
chair) and the discussion of how the biologics work reminded us that
this is immunosuppressive therapy – the drugs suppress the immune
system to stop the immune response that theoretically causes the lesions
and PA. This is not without risk – a pathogen that might otherwise not
make much difference can get past a suppressed immune system and cause
some damage. Is it worth the trade off?
was much discussion about coping with the disease. Several new people
expressed what we’ve all felt at some time or another: despair,
frustration, feeling alone, anger, etc. Several people talked about how
religion helped them deal with their feelings, and admittedly I cringed
when this thread started because nothing starts a fight faster than
religion, except maybe politics. I was pleasantly surprised to see that
people generally respected views that differed from their own and the
thread was able to ease gently into safer territory.
had a few spammers, as always, but they took up far less of our time and
energy than they have in the past.
topics covered included: