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Michelle Sawicki

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Everything posted by Michelle Sawicki

  1. Hi everyone, I wanted to share a talk that I found inspiring. I think it is one that many of you will be able to relate to: Janine Shepherd: A Broken Body isn't a Broken Person http://www.ted.com/talks/janine_shepherd_a_broken_body_isn_t_a_broken_person.html Michelle Sawicki
  2. Hi,

    The problem is internal. I'm sorry. Our IT person has been working on it. We will fix it.


  3. You can read it here: http://www.dinet.org/newsletter.htm Michelle Sawicki
  4. Hello everyone, Nina stated DINET's goals well. The DINET site was created out of complete frustration with how little information was out there regarding orthostatic intolerance. My goal was to get the available research in the hands of patients and also to provide support and networking, such as the Meet Others Program and forum do. I am in grad school now and my time is extremely limited. Many of you have expressed some really great ideas here. Have you thought of taking the first steps to see your dreams fulfilled? I agree that someone needs to do this. Why not you? Michelle Sawicki
  5. Hi, I most likely still have your orders in our inbox. I will get with Alexia and see what has and has not been filled. I haven't received the DVDs yet. Michelle Sawicki
  6. There are two different reply buttons. You will see one to the bottom right of each post. That will reply to that specific post and -if this forum is the same as the last- will have that person's post in quotes within your reply. There is also an "Add Reply" button at the bottom right of your screen. That will add a reply to the entire topic (with no quotes). Did that answer your question? Michelle Sawicki
  7. Hi everyone, Are you guys still getting a slow response after you hit the reply button? Please let me know.. Michelle
  8. Livinstrong, You just need to go to www.dinet.org and fill out the join form if you want to join. If you are emailing me from the forum, then you are already a forum member. Please contact a forum moderator if you need help using the forum.

  9. Please do not reply to any emails that sound suspicious. If you are receiving emails you do not want, you can always log into your messenger area and block the person in question.

  10. Thank you for your patience. The new newsletter is available now. Special thanks to Staci Friedman, Kristen Fouts, Janie Farrens, Annette McDermont and our advising physicians for making this newsletter possible. I'd like to also thank whoever sent in the research abstracts. We have Firewatcher, Artemis, Yogini and Steph06 listed as the researchers...which one of you sent in these articles? Michelle Sawicki
  11. Sorry, I am still working on the site. Give me a few minutes and it should be up. Michelle
  12. I just wanted to let everyone know that I ordered more of our Changes DVDs. I will make them available for free once I get them. Please check www.dinet.org in a week or two for order information. Thanks, Michelle
  13. As far as I know the doctors were just as surprised as we were. The ones I am in contact with did not know of this ahead of time. Michelle
  14. The forum will move before our new website is ready. When everything is finished the forum will reside within the website at the same host instead of us having two separate hosts like we have now. We'll save money that way. Michelle
  15. Hi, The forum will be down for brief periods while we move it to a new server within this week. Please be patient. Thank you! Michelle
  16. I am very glad to hear this site has helped you so much. I definitely remember you and it was nice to get an update. I hope you continue to improve. Michelle Sawicki
  17. HI everyone, Dr. Grubb sent me this video the other day. Please note our correspondence after watching the video. This pacemaker will unfortunately not help most POTS patients. Hello Dr. Grubb, Thank you for sending this video. The person in the video had a very low resting heart rate. Is this pacemaker something that might help your average POTS patient, or just those with very low resting heart rates? I have read so much about pacemakers sometimes actually worsening POTS. How does this pacemaker differ from those others? Michelle Sawicki, President DINET PO Box 55 Brooklyn, MI 49230 Dr. Grubb's reply: This particular patient is quite unusual. The pacer would not help the average POTS patient. Blair P. Grubb MD FACC Professor of Medicine and Pediatrics Director: Cardiac Electrophysiology Service Health Science Campus University of Toledo School of Medicine 3000 Arlington Ave Toledo, Ohio 43614
  18. I am going to close this post now. I also want to send out a general reminder that a tone of kindness is appreciated in all discussions and also that DINET's forum is not a place to post medical advice or solicit members. Please review the following forum rules for further clarification: Medical Advice The content of DINET's forums is in no way a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and a physician. Please keep in mind that treatments that help one patient may be detrimental to another. Members should never try any new treatment without first obtaining a physician's approval. Clarification to "medical advice:" It is okay to suggest someone seek professional medical advice and treatment. It is okay to say that you had a similar situation in which you were treated with x, y, and z medications. However, it is not okay to tell others what to do, such as, "You should take x, y, and z medications." Participation on DINET's forums signifies that you agree to abstain from giving medical advice to other members. Respect For Others A tone of kindness is appreciated in all discussions. Please do not post information regarding anyone else's health without first obtaining that person's permission. You agree, through the use of DINET's services, that you will not post condescending, defamatory, obscene, offensive, violent, racist, profane or illegal material on this forum. DINET encourages you to use good judgment, but please do not be judgmental in posts. You agree to refrain from flame wars, debates and the discussion of "hot topics," which are likely to provoke debates. Common hot topics include, but are not limited to, politics, abortion and religion. Asking for prayer is allowed, but please do not use this forum to promote your religious beliefs. Posts dealing with sex-related issues should have a tone of maturity. DINET's forum has a built in censor that removes profanity and replaces it with "****." Attempts to bypass the censor by the misspelling of inappropriate words will be edited. Clarification: The following definitions are provided to clarify DINET's forum rules. However, DINET's forum rules are not necessarily limited to these definitions. Definitions are from The American Heritage Dictionary of English Language, Fourth Edition. Condescending: 1. "Displaying a patronizingly superior attitude." Defamatory: "To damage the reputation, character, or good name of by slander or libel." Obscene: "1. Offensive to accepted standards of decency or modesty. 2. Inciting lustful feelings; lewd. 3. Repulsive; disgusting." Offensive: "1. Causing anger, displeasure, resentment, or affront. 2. Making an attack. b. Of, relating to, or designed for attack." Violent: "1. Accomplished by force: coercive, forcible. 2. Extreme in degree, strength, or effect: desperate, fierce, furious, intense, terrible, vehement." Racist: "1. The belief that race accounts for differences in human character or ability and that a particular race is superior to others. 2. Discrimination or prejudice based on race." Profane: "1. To treat with irreverence. 2. To put to an improper, unworthy, or degrading use; abuse." Illegal: "1. Prohibited by law. 2. Prohibited by official rules." Judgmental: "1. Of, relating to, or dependent on judgment. 2. Inclined to make judgments, especially moral or personal ones." Public Disagreements with Other Members You agree that if you ever have a disagreement with another forum member you will not attempt to persuade other members to take your side of the argument or publicly post about it on this or any other forum, blog or website. Please be mature and talk to any member you disagree with privately. Public Disagreements with Administrators, Moderators or Rules You agree that if you disagree with DINET's forum rules or the actions of an administrator or moderator you will not publicly post about arguments or disagreements on this or any other forum, blog or website, nor will you attempt to petition administrators or moderators to change policy through posts, polls, email, PM or any other service found within the DINET website. You agree that you will not attempt to persuade other members to take your side in any disagreement with administration, moderators or rules. If you have a disagreement, you may respectfully send an email to DINET's administration at staff@dinet.org. Soliciting DINET does not allow advertisement. This includes, but is not limited to, medical studies, other organizations, products, businesses, websites and forums. If you are a researcher who would like to advertise your medical study, please contact DINET. Use of our forum signifies that you agree not to use any services provided on DINET's website or forum to solicit others. Soliciting: "1. To seek to obtain by persuasion, entreaty, or formal application. 2. To petition persistently; importune. 3. To entice or incite to evil or illegal action. 4. To approach or accost (a person) with an offer of sexual services." Further clarifications regarding soliciting: It is okay for you to share your experiences with medical studies as long as you follow forum guidelines. However, it is not okay to suggest members participate in medical studies, or to post information on how members can participate in medical studies. It is okay to say you are a member of another organization, website or forum. It is okay to say you use a particular business or product. However, it is not okay to use DINET's forum to recruit members for other organizations, websites or forums. It is not okay to use DINET's forum to promote businesses or products.
  19. I am posting this for Maggie. Please make sure to contact her if you want to join in on the quilt project. -Michelle Hey forum members, Here's squares # 10, 11 and 12. They all did a great job. There's still time to get involved with this project. Just pm me with your address and I'll send you everything you need to do a square. We are moving right along on this project. Hope others of you will want to join in the fun. Maggie
  20. How kind of you guys! Thank you! Michelle
  21. Nina, if you figure out how to get rid of that yellow, let me know. I've used tumeric for years with my canaries because it helps prevent a protozoa birds are prone to called coccidiosis. I shred the root and always end up with yellow fingers. I hope tumeric helps all of you. I am following this post with interest. Michelle
  22. Hi guys, For those of you who know Amy Van Der Kamp, I just wanted to let you know that she is not doing well at all these days. Michelle
  23. Here's my two cents for what it is worth (which is about two cents...LOL!) I really think you just need to be yourself...pullled muslces and crappy mornings and everything. I mean, you really can't live your entire life *pretending* to be one way when you are really another, and YOU would probably actually get really tired of that after a while. That said, if it were me personally, I wouldn't complain about the symptoms too much because that could get wearisome to another after a while. And I would avoid the whole morning situation with someone until they really got to know you. But I couldn't imagine being in an intimate relationship with someone and not just being able to be honest when I didn't feel well. I would also tell anyone new that POTS and EDS are not contagious. I've heard of situations where people thought they were and were afraid to kiss the person, etc. Did you ever see the movie Juno? There is a line in there when her father says something like "You'll know you've met the right person when they think the sun shines out of your *butt*" (and I'm changing that word to be forum appropriate). We might not always feel the greatest, but everybody has their downside...everybody. It's the person who can look past your illness and still think you're the greatest that is the right person for you. Michelle
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