Michelle Sawicki

I've been wondering too! I hope she checks in to let us know how things are going. Michelle

I take licorice primarily for water retention....otherwise water seems to go right through me. I don't take it every day because it can lower potassium. I usually only take it on the days I work (3-4 days a week). The capsules I take are 450 mg, and I usually take 1-2. I don't know what the recommended dose is for people with low blood pressure & POTS (or if there even is a recommended dose...I've never looked into it). If your going to try it, you really should do so under a doctor's supervision. I have added a few licorice links to the website for further reading: Medicinal uses of licorice through the millennia: the good and plenty of it: http://fkogserver.bmc.uu.se/course/B/Liquorice.pdf Licorice root. A natural sweetener and an important ingredient in Chinese medicine: http://www.iupac.org/publications/pac/2002/pdf/7407x1189.pdf Licking latency with licorice root: http://www.jci.org/cgi/content/full/115/3/591 -Michelle

You might want to try your local library for free rooms. Have fun! Michelle

Hi guys, Someone wrote to me the other day asking about licorice root and, for the life of me, I can't find their email. I think I may have accidently deleted it. If it was one of you and you're reading this, could you please write to me again. Thanks, Michelle

Hi Ellen and Corina, We've already got everything planned and going for the first week in July. I've taken time off work and others have worked it into their schedule too. I wish you could participate though, Ellen. Maybe wherever you are staying will have Internet access? Corina, I hope you have a great vacation. I've always wanted to go to France. Can I live vicariously through your trip? Take some pictures and send them my way. Michelle

Thanks for adding my pups! I love seeing everyone and being able to put faces with names. Michelle

Corina, I can't wait to see those cards! I think I emailed you the address of where to send things, yes? We'll be running the auction on ebay the first week in July. However, we'll be putting up pictures of items on our site before the auction so everyone can see what will be put up for bid. This is where we will also feature pictures of the people who donate if they so wish. So keep an eye out for the auction page we'll be adding soon. Thanks so much for making cards! Michelle

Happy Birthday!!! Sounds like your having a great one. Michelle

It looks like you've already gotten some great advice. The only thing I have to add is might there be a company in your area that delivers food door to door? We have Schwan's here where I live, and you can just call in an order and they deliver. You can google them to find out if they deliver in your area (I have no idea how widespread they are). Also, if you type "grocery home delivery" into google, quite a few different companies come up. Michelle

Awe...I feel so sorry for you and your little guy. You'll be in my prayers. Michelle

That was a really sweet message, Tearose. I wish all the mothers out there a happy Mother's Day too. Michelle

Hi everyone, There has been a lot of talk on the forum about new DINET services. I felt I should post about this because I don't want you guys to get the wrong impression and think we have some of these extra services in the works. I wish I could say we've come into a large amount of money and are able to even consider some of the extra programs discussed, but that just isn't so. We're currently operating on very little funds. However, when/if the day comes that we can consider adding more programs I will be the first to let you know. Thanks for your understanding. Michelle

We've received another donation! Robert and Sally Miller donated $100. on behalf of Chrissy Lorenzo. Thank you! I've changed the page so that we can track donation until the end of the year, at which point we will start anew. Thanks to those of you who have helped, and those of you who are planning to help in the future. Donations will be used for dysautonomia education. http://www.dinet.org/logo.htm Michelle

Hope you have a fantastic birthday! You've been so instrumental in getting brochures published (and at a great price, too!)...I can't thank you enough for all you've done for DINET. Michelle

I am sorry to hear of your loss. When you have the time, please send me an address where I can send a thank you to the family. Michelle

We've reached our goal!!! Melissa Davis donated the needed $135. Thank you, Melissa! And thank you, Alexia, for coming up with the idea of Member Appreciation Donations. These donations make our work possible, and we can't thank our donors enough. http://www.dinet.org/logo.htm Michelle

So it's "viola!" Thanks Emily! I forgot to mention that Dan's donation was made in memory of his friend who passed away a couple of years ago, Brent Allen Chance. We've received a $100. donation from Hugh Washburn, in honor of Joannie Boehnen! Now we only need $135.00 more to reach our goal! http://www.dinet.org/logo.htm Thanks to everyone who helped Alexia's "Member Appreciation Donation" idea become a reality. We're very grateful for all of your help here at DINET, and our work wouldn't be possible without it. Michelle

Nina, I told my doctor about the reaction to Nasonex yesterday and she said "That's a very uncommon reaction." Guess not for us though, eh? I'm staying away from that one. Emily, the saline spray is just a nose spray. I think you can use it as often as needed...it's just saline....but maybe check with your doctor on that one. Michelle

We are over half way to our goal!!! Thank you, Dan Jacoby, for your donation! http://www.dinet.org/logo.htm Emily, if you can make a table in a program like Microsoft Word, than you can make the graphic I just made. It is really easy. Make a take, split or merge a few cells, add some shading to the background and wha la (How do you spell that anyhow? LOL!). I like all the fresh energy aboard too! It's exciting, and the more people involved, the more we'll get done! Michelle

We've reached almost half of our goal now thanks to donations from Gilbert Santiesteban, Staci Friedman, and the Lorenzo family on behalf of Chrissy. http://www.dinet.org/logo.htm We can't thank you enough!

I've been really curious about this, so I contacted the gal who put on the lecture we attended (not the doctor who actually gave the lecture, but the person who arranged it and runs a support group for EDS). This is what she had to say - now grant it, she is not the doctor who gave the lecture, so we really don't know what the doc was referring to, this was just her interpretation of what was said, which was similar to mine: I have definitely heard of this with Vascular type EDS. It is also sometimes referred to as mosaicism. It's where one parent has sort of a partial mutation in a particular gene, which doesn't cause symptoms in the parent, but then it is prone to transforming into a full-blown mutation when that parent's cells divide to become eggs or sperm. So it's still a dominant trait (not like a recessive gene where a person who is affected with a disease might have a child who is an unaffected carrier, who could then pass on the disease to affect the next generation). With mosaicism, there is no family history of the disease at all. But one parent's genes are such that they carry a strong potential for spontaneously mutating into EDS. Therefore, it can happen to more than one of their children, without the parent being affected. My impression from Dr. Petty is that mosaicism could happen with any type of EDS. I do know that spontaneous mutations can happen with any type of EDS, where neither parent has any defect in any gene, but for an unknown reason, a mutation happens in the baby's genes and it develops with EDS.

I sent both you and persephone a PM regarding international donations. Thanks! Michelle

I'm doing pretty good. Here are a few things I do to stay that way: -As mentioned previously, I feel better when I take my meds before getting out of bed -I always sit in the shower -Lay down for a few minutes after getting out of the shower -I sit down while putting on makeup and drying my hair -When I'm having a bad day (and it's winter) I won't turn on the heat in my car so that I vasoconstrict all the way to work. I hate being cold, but this really does help. -Avoid stairs when possible. If not possible, I breathe evenly and deeply while going up the flight of stairs. -Lots of water & pedialyte w/ extra licorice root on bad days -At work, I pull up a chair and sit down with my patrons when they need help on computers, etc. -Get plenty of sleep -Take breaks, put my feet up, and get the blood back to my brain -Wear compression hose, but not if it's too hot -In the summer (in sandals), I can watch my toe nails to see how blue they are turning...they are kind of a red flag for when I need to sit down -Try not to lift anything too heavy. I can't always avoid this at work and end up paying for it when I have to. -Try not to do anything that requires a lot of bending over, such as taking the groceries out of the shopping cart. -Take it easy on bad days and try not to push myself too much -Lower my expectations of how clean I want my house etc. and what I can accomplish in a day There are probably a million and one other things, but that's what I can think of off the top of my head.

I'll send you a PM regarding this. Thanks! Michelle

I like seeing the donations this way as well, Emily. I think I will keep it up and add all of this year's donors after we reach our goal. I just received the brochures in the mail today. Yay! Now I will contact the gals who were interested in sending them out and get that squared away. They'll be available soon. We've received even more donations toward our goal: http://www.dinet.org/logo.htm (YAY!) I also made some updates to the website. There are a ton of new links on the What's New page. Some of those links were sent by hmichel, buddyleeswife and I think briarrose may have sent one or two as well. I hope I am remembering everyone. There are lots of good articles to read, for those of you who have some extra time today: http://www.dinet.org/Whats_new.htm Amber (Amby) was also kind enough to update our list of support groups, which I hate to admit was w-a-y out of date. We update it every year, but a lot can change in a year. We still are waiting for responses from some of the leaders, so we're not sure if everything on the page is 100% correct, but it is better than it was. Thanks Amber! Michelle