Michelle Sawicki

Hi everyone, I was supposed to be taking the next two weeks off from moderating because I am swamped, but I didn't want to stick poor Nina with this one. The forum guidelines were put into place to protect each of you and to keep things on track. This is a dysautonomia forum. Our name is the Dysautonomia Information Network. Dysautonomia is what we are all about. I think about 99% of what is posted here does relate to dysautonomia. Wheelchairs and coping mechanisms certainly do relate to dysautonomia. The new forum guidelines did not stem out of one incident. If you stop to read them, you will see that "solicitation" was probably added to the most. There was a reason for that. Updating the forum guidelines is something that I have been needing to do for a while. Again, most of the posts here are completely relevant. We have made exceptions for some off-topic posts, which you can read in the forum rules. And please do not be afraid of being publicly embarrassed on this forum. I really don't slap people on the hand in front of others. If it ever gets to the point that I am publicly confronting someone on the board it is only after I've done so privately and they have ignored my warnings, or because they are r-e-a-l-ly out of line and acting up. We have a "tone" that we have set on our forum, and we work hard to keep it. We want this place to be positive, caring and supportive. Yes, there are times when we all need to vent and rant -I am fully aware of that- but if people are rude, argumentitive, insulting, or completely negative in all posts and to others etc. I am not going to let them continue to participate on our forum, and I do that for the sake of all of you. Let me tell all of you a little about my life.... I work three days a week in the reference department of a public library. I have a teenage son....and everything that goes along with raising a teenager. I have a husband who I try to devote evenings and weekends to. I have to keep up on the latest research to keep the website up-to-date....a monumental task. I currently have a stack of research papers on my desk waiting to be added to the website. I create DINET's newsletters. I greet each new person who signs up with DINET and send them an informational brochure. I try to keep in touch with our medical advisors and volunteers, though they are often neglected as I often have no extra time. I have (often lengthy) phone calls with members who request them. I have projects that DINET is working on that I need to focus on and/or oversee. I have a messy house that I keep saying I am going to get to one of these days... I am writing a book (not related to dysautonomia). I have 3 crazy dogs that I try to walk every day for their (and my) exercise. I usually have at least one appointment a week that I must attend on my days off. I live in the country, so to go to stores, appointments, etc. I usually have to drive an hour or more. I have a chronic illness (POTS) that leaves me feeling unable to focus and work the way I need to on some days. I could go on, but I think you guys get the point. My life is busy, and burdened with chronic illness on top of everything else. I wish I could throw "moderating an off-topic forum" in there, or to say I have extra time to moderate off-topic posts on this forum. I honestly just don't have the time. The off-topic posts are the ones that cause the most conflict between members, and cause the most complaints to me. I have worked one too many evening late into the night trying to mend hurt feelings after reciving a flurry of emails because someone posted something someone else did not like....and it had absolutely nothing to do with dysautonomia. Also, I am well aware of the dangers of making a forum where I say, "Go ahead, have a free for all". I know it would make some of you very happy....for a little while. But when you visited it and found links posted to porn sites, people arguing with you, people solicitating you, etc. you would be the first to get offended and send emails asking me to remove the offending posts. I have to use caution and common sense and put guidelines on this forum. Take a second to think about why you came to this forum....I'd venture most of you were trying to learn about dysautonomia. Now take a second to think about what you like on this forum....I think you will realize that our forum is enjoyable because we don't tolerate certain behaviors. Please understand that I am a dysautonomia patient just like you guys. Everything I do with DINET is completely voluntary. I recieve no compensation, and no one hands me a ribbon or pats me on the back at the end of the day. DINET is a job. I have taken it on, without any compensation, because I feel passionate about helping people who have dysautonomia. I'm sorry if some of you do not want to support DINET as a result of my decisions, but ultimately I am doing my best to keep the group -as a whole- happy. Michelle

There is a shy-drager support group at: http://www.shy-drager.org/ I hope that helps! Michelle

There was an article in the December 2002 Guideposts about a girl who was having autonomic storms. She had a lot of other problems too...leukemia and meningitis. Sometimes having information in print helps others understand. Michelle

Hi Kite7, I had a FANTASTIC doctor who moved away not too long ago, so I can relate. She was open to all my thoughts and ideas, was compassionate, really listened, and had a way of putting people right at ease. I miss her! She was replaced with another doctor who I have only seen once...she seemed okay, but I don't think I will ever find a doctor that measured up to the one who left. It's fantastic when you can find one great doctor, let alone two, and I wish you the best in finding another. Sincerely, Michelle

I'm guessing you got that info off of Stewart's site? I linked to some definitions that might help you understand: adrenergic vasoconstriction peripheral vasodilation splanchnic venous arterial I hope that helps, Michelle

Most of the people I've talked to that have "moved on" have gotten the information/support they needed and are now focusing their thoughts and energy elsewhere. Take care, Michelle

Katherine, I'd love your help with this. I already started on it some time ago, but the numbers have changed since so I will have to update it. I will send you a PM so we can talk further. Thanks, Michelle

I'm locking this topic to avoid any more hurt feelings. Please note that I have read much of the published literature on POTS and everything says the associated arrhythmias are considered benign (not life-threatening). However, you should always consult a physician if you are experiencing arrhythmias. Michelle Sawicki

Hi Sue! Actually there is a chat feature available with the forum but it costs extra and we have decided against it at this time....mainly because we don't have anyone to moderate it 24/7, which means anyone could get on there and say anything. I feel my #1 responsibility on here is to keep you guys safe, so that is the reason we have held off on chats. Michelle

Corina, We are including the physicians from our Physician List page. I know not all physicians are on there so it won't be 100% accurate, but I think it still should be interesting. Also, we don't just automatically include physicians on our list. We first send them a survey and ask them if they would like to be on our list. Some well-known physicians, like Dr. Rowe or Dr. Abdullah, have chosen not to be on the list. There are way too many patients and way too few doctors, and sometimes doctors are already overwhelmed and don't want the publicity. If you want, you can submit your doctor's contact information through the "Add a Physician" link on the Physician List page. Take care, Michelle

We're going to do this for one of the newsletters. I've already started on it, but feel free to speak up here too. I am also going to inclue where our physicians are located...that way we can see the physician to patient ratio in areas. Should be interesting... Michelle

All of you once came here to learn about dysautonomia. It is wonderful that many of you have since made close, personal friendships. However, when you want to discuss topics with your friends that have nothing to do with dysautonomia it is best done off of the Dysautonomia Information Network's forum. I have come to this conclusion after spending one too many evenings working late into the night to resolve conflicts on our forum that have absolutely nothing to do with dysautonomia. It is dysautonomia that unites us. When we delve into topics that have nothing to do with dysautonomia, differences of opinion are often expressed and then flame-wars start. That is not what this forum was set up for. Our goal is to help people with situations and experiences relating to dysautonomia. Obviously there will always be some grey area relating to this topic. For example, I see nothing wrong with Emily and Corina's comments on idioms, for that is a very generic topic not likely to spur debate. I also will gladly make exceptions to the rule for announcements such as births, deaths, marriages, adoptions, graduations, accomplishments and achievements. Ultimately, I ask that you all use sound judgment in your posts, and I will continue to do my best to make this a safe and supportive place geared toward helping people learn about dysautonomia. Thank you for your cooperation. Michelle

Sophia, I think clear subject headings would be appreciated by all. Thanks for sharing your thoughts and ideas. Michelle

Hi guys! I've read all your posts, and I love to see you fired up about educating both physicians and the public. If you read our newsletter you know Valerie Fenston will soon be mailing educational brochures to physicians around the country. Dr. Stewart (one of our medical advisors and a lead investigator in dysautonomia) proof-read the brochures and offered some fabulous suggestions. We have another person who will be contacting top dysautonomia physicians to obtain publications we can use for an educational mailing packets. The packets, as well as the brochures, will take money to duplicate and mail. I love your ideas, but as we are taking on two new projects that will take our time, energy and money, I don't think it is wise for us to take on a third project at this time. Also, our funds are limited. However, this is something we can probably do in the future, provided we have enough volunteers and funds. I do think the projects we are currently focusing on will help to achieve what many of you have expressed a desire to do: educate others about dysautonomia. As for a conference, they are mighty expensive. Dan Smith from NDRF told me their last conference, which was very nice, cost over $100,000. We could have a scaled down conference, but it still would cost thousands of dollars. I have been told that most funders will not fund conferences. Still, there are some who will. If any of you would like to help with grant research/writing, we would be happy to have you aboard. Sincerely, Michelle Sawicki

To Merrill and others who may be confused about our name: I started potsplace.com years ago, with no intentions of it becoming a nonprofit organization. I was simply a POTS patient who had gone through what many of you have...I'd become ill, no one could figure it out and even when they finally did (after I found the information myself) no one could really explain it well to me. No one had a convenient list of the things that might help, and the things to avoid. This led me to do my own research. I learned a lot, but still heard from many, many patients who were struggling to find information on POTS. That is what fueled me to create a website about POTS, potsplace.com. I quickly realized that potsplace.com was costing me quite a bit of money. I paid for the website, domain name, research articles, etc. I was spending money I didn't have to help other people. The expenses continued to add up, and I knew I would have to be able to ask for donations to keep things going. And so, I started a nonprofit organization. I could have named it potsplace, as this was the original website name. However, I also wanted to help those with other forms of orthostatic intolerance. I felt the name "potsplace" limited me to POTS, so I named the organization "Dysautonomia Information Network" and expanded our website to include other forms of dysautonomia. We own the potsplace.com, potsplace.org and dinet.org domain names. So that is the story behind why we are called by two names. "Dysautonomia Information Network" is our official, registered name. Michelle

Thanks for your thoughts, everyone. Actually, I like that we support each other through tough times, and that we help each other through. I think that is what brings people to this forum time and time again. I am all for support. What makes me leary of off-topic posts (posts that have nothing to do with dysautonomia) is that I get more complaints about off-topic posts than any other posts on the forum. My time is precious, and I choose not to put myself in a position where I continually have to get get involved in people's arguments that have absolutely nothing to do with dysautonomia. I gladly moderate posts dealing with dysautonomia. However, I strongly feel I should not have to referee political debates, religious disputes, or (hypothetically) have to tell Ms. X that no one really wants to hear daily updates on her cats. There are topics that clearly belong here and then there are topics that clearly do not. What lies in between is a grey area that I am attempting to sort out. Best to all, Michelle

Just an FYI...I am walking out the door right now but wanted to let you know I have read this post and will respond this evening or tomorrow at the latest. Michelle

Just to explain a bit more on Nina's above post....if you have not had a post deleted or been contacted by Nina or myself regarding one of your posts than Nina is not referring to you, so please don't feel the need to apologize "just in case." 99% of the people here use the forum appropriately, and I have no qualms with 99% of the discussions here. It is the approximately 1% of inappropriate posts that I am trying to prevent, and I am trying to do this for your happiness as well as my own. Thank you to those who have let me know you enjoy the site. Miriam, yes they are the ones who come knocking at your door. We may have some on the forum. And please feel free to share your one year survival. Katherine, I have thought about an "off topic" area, but have not started one because of the reasons you mentioned in your post. I am still working on my clarifications, but will post more soon. Michelle

I've had to edit and/or remove posts from this topic. Please be respectful of one another. Just to make it clear to all, we've had to remove posts in the past due to the subject nature, which is why I am clarifying the forum rules. The clarifications did not result from one post or one person. I will explain my feelings on religion now, and I do encourage you to post your thoughts as well. Ultimately this forum belongs to all of us, and I want it to be a place you can all enjoy. I feel it is fine for you to ask for prayers from others. This can be a great way to support each other. I also feel it is fine to ask other members if you can pray for them. I do not feel it is a wise idea to just send a prayer out to the forum members in general or to any particular member without asking. I say this because the other person may not be of your religion, or may be an athiest altogether. I will give you an example that will -hopefully- help you understand why I feel the way I do: I have a friend who is a Jehovah's Witness. He would not be too happy with me if I started praying about how Jesus will protect his soul, and how he will one day walk the streets of gold and live in a mansion in heaven. He doesn't believe he has a soul, and he doesn't believe he will go to heaven. Saying these things to him in a prayer would surely make him feel uncomfortable, not comfort him. For reasons such as these, I feel we need to be careful about who we pray for and what we say in a prayer. You probably will not offend anyone by saying, "I am of such religion. May I pray for you?" and then praying if the person says it is okay. I am simply trying to be respectful to all members by setting these guidelines. Please feel free to share your thoughts with me... Michelle

I have read your posts and am considering all that you have written. I will post a reply in the near future. Michelle

I have attempted to clarify DINET's Forum Disclaimer. Please let me know if anything is still unclear. http://dinet.ipbhost.com/index.php?showtopic=5 Thank you for your cooperation. Michelle Sawicki

"Small, harmless bumps under the skin" can be a sign of Ehlers-Danlos syndrome. See http://www.findarticles.com/p/articles/mi_..._65/ai_87027912 for more info. Best wishes, Michelle

Read it at: http://www.dinet.org/Spring2005/spring05news1.htm Best wishes to all, Michelle Sawicki

Regarding dishonest dentists... There is a device my dentist uses called an intra-oral camera. It is a tiny camera that takes picures of your teeth and projects a large picture of each one onto a computer screen. The picture quality is fantastic, and when my dentist says I have a cracked tooth he can show me the crack in the picture. Now I can actually see the cavaties, ect., so I don't just have to take my dentist's word for it. For any of you that doubt what your dentist is saying, you might want to see a dentist that uses this type of camera...I know it gave me peace of mind. Michelle

I think most of you know that in addition to running DINET I also work part time in a library. I specifically chose library work when going back to work with POTS because I had worked at a library while in college and I knew it was low key and wouldn't require a lot of standing. The only time I had a real problem with work/POTS was when they asked me to teach classes, which required standing for hours at a time. This proved to be too much, and I would spend the following day in bed if I taught a class. However, I was able to get a doctor's note and now I don't have to teach classes anymore. Working in a library is probably not something I would choose if I were completely healthy. I still have a "go go" personality, but I just can't "go" like I used to. And I must confess, at times it can be terribly b-o-r-i-n-g. However, it is something I can do to make a little money, so I do it. There are jobs that some of us healthier people with dysautonomia can do. Sometimes you have to re-evaluate where you are going and what you are capable of. I can't say I'm living my dream by working part time in a library, but I can say that right now it works for me and I am happy. I wish you the best, Michelle