Michelle Sawicki

Hi everyone! Glad to hear some of you are interested in getting together. Anyone else? What days of the week will work for you guys? Times? I'm available most Tuesdays, Thursdays and Sundays (some Fridays and Saturdays too). Let me know what works for all of you. We can even do lunch if that works better. Anyone from Ohio is welcome to meet with us as long as they are willing to drive to the Ann Arbor area. Looking forward to getting together with everyone! Michelle

I want to thank the following people for helping to get the bracelet fundraiser rolling: Forum member Stacey Yount, for coming up with the idea in the first place and for helping to execute the fundraising plan. Nina Wilde, for directing the project for DINET. Our anonymous donor (you know who you are!) who donated $125.00 to help us start the bracelet fundraiser. Forum member DancingLight, (aka Emily) for donating $25.00 to get this fundraiser underway. You all have contributed to make the bracelet idea become a reality, and I want to express my gratitude to each of you. Thank you! We're not done with the bracelets yet, and this fundraiser could still use some financial backing. If anyone is interested in contributing they can do so at: http://www.dinet.org/how_you_can_help.htm Please be sure to specify that you'd like your donation to help with the bracelet fundraiser. For more information on DINET's bracelet fundraiser, please see the following post: http://dinet.ipbhost.com/index.php?showtopic=1087 Thanks again to those who have helped so far! Michelle

Hi guys! I've met individually with some of you from Michigan already, and I was thinking it would be nice if you could all meet each other. Anyone interested in meeting for dinner in a central location...maybe the Ann Arbor area? Let me know.... Michelle

Hi Ling! Have you seen a doctor about this? If not, I encourage you to do so. I wish you the best. Michelle

Welcome to the forum! As previously stated, the "What Helps" page has info that may help you. We're here to help! Michelle

Congratulations! How exciting!!! Michelle

The thing that helps me the most when I crash is Motrin. Pedialyte helps as well, as does wearing compression hose and getting lots of rest. I'm sorry to hear about your crash. I know it can be both frustrating and scary. Hang in there... Michelle

Oooops....I just remembered...the 20th is a Monday. I won't be able to make that one... Maybe another time... Michelle

Hi Amy! Welcome to the forum! I was wondering where you were! I was looking out for "Tiger Lady." Good to see you have joined us. I enjoyed meeting you for dinner in Ohio. Hopefully we will meet again on the 20th? BTW, anyone else in the Toledo area is welcome to join us for dinner.... Michelle

I took it years ago. It didn't help much, but it didn't hurt any either. The patches did leave bright red marks on my arms, but they don't do that to everyone. Hopefully it will help you. Best of luck. Michelle

That's great news, Sue! I'm happy for you. Michelle

You should definitely see a doctor about this. There are conditions other than POTS that can cause this. Michelle

I can't do sugar, caffeine, or alcohol . I try to stick to basic foods without a lot of additives/preservatives. Michelle

Hi guys! Thanks for your input re: alternative therapies. And Pam, thanks for sharing your similar experiences and for the explanation on "Logan Therapy." I wish you all the best in whatever treatments you seek, whether alternative or otherwise. Michelle

Hi Sue! If it helps any, I was told by my doctor that if a lump hurts that is a good thing....it is the painless ones that more often turn out to be cancerous. He also told me that if it is movable than that is a good thing too. I've had surgery 3 times to remove lumps. I had a few removed from my breast years ago, then one from my arm and then one from my ovary. I know it can be scary. I'm sending good thoughts, prayers and cyber hugs your way. Take care, Michelle

Hi Futurehope! I want to thank you for posting about the baking soda. I've been drinking baking soda/water for the last couple of weeks. It REALLY helps my stomach. I was even able to stop taking Nexium because the baking soda helps just as much, if not more. I couldn't take salt tabs because they upset my stomach. The baking soda/water is a good way to get some extra salt and keep my stomach feeling well too. How are you doing with it? Michelle

I've only been to a chiropractor once in my life. I was thinking about running a "My Experiences with Alternative Therapies" column in the newsletter at one time, so I wrote down my experience with this chiropractor when I got home. Let me say before you read this that I am sure there are good chiropractors out there, maybe great ones, but unfortunatly the one I saw was not one of them. I don't want to knock chiropractors here, so please don't take it that way. For what it's worth, here was my experience: I chose Dr. C out of the phone book. He specialized in gentle manipulation, with no cracking or popping. Dr. C has been in business for 21 years. During my appointment I filled out the usual paperwork. I noticed they had ?family plan? discounts. I had not known that whole families went to the chiropractor. After the paperwork was completed, they had me watch a short movie. The movie showed people discussing their experiences with chiropractic work. Some had obtained instantaneous results. Others had had to go for months before they saw results. Basically, it covered all bases and encouraged people who didn?t see results to keep going anyway?surely they would eventually see results like the people in the video. After the video I had some time to sit in the room and listen to Dr. C in another room, answering some questions for another patient. The patient asked, ?How do you know which bones to manipulate?" Dr. C enthusiastically answered, ?Well, it?s really something. I can just ask the bone, this one, yes or no? And your body lets me know which bone to manipulate. It answers me. And it?s really something? chiropractors can go to other countries and ask in their own language, and the body will still answer them. It?s really incredible.? He was serious. He really was. I tried my best not to laugh. Thank God I wasn?t in the same room with them. I don?t think I could have held my composure. ?How important is nutrition?? the patient in the next room asked. ?Nutrition is very important,? answered Dr. C. ?I have two supplements that will help you. One is $20. and the other is $28. I take them every day.? Dr. C sold his supplements, thanked his patient for the questions and finally entered my room. He looked over the paperwork, which had asked about my current health problems. I had put down "postural tachycardia syndrome" and "Ehlers-Danlos syndrome." ?What is Ehlers-Danlos?? he asked, pronouncing it ?Eerlos Danloss." I gave him the simplest explanation I could think of. ?It is a connective tissue disorder that lets my joints move further than they should." Dr. C looked at me in all seriousness and said, ?Around here we call that loose joints due to adrenal exhaustion." Oh really? Funny, he couldn?t pronounce Ehlers-Danlos a second ago, but now he was sure that it was a disorder synonymous to this ?loose joints from adrenal exhaustion." Once again, I tried my best not to laugh. ?Did you go through a period of stress before you got it? Did you have any traumas or falls?? Dr C asked, now certain he knew exactly what was wrong with me?certain that he could surely fix me up with his chiropractic expertise. ?No," I told him. Now it was my turn to look at him seriously. ?It?s a genetic disorder,? I explained, ?It runs in families. There?s a mutated gene.? ?Well does anyone else in your family have it?? he asked. ?Both of my sisters show signs of it," I answered. He said nothing further about adrenal exhaustion. Instead he started telling me about the tests I was to have, a surface EMG and x-rays. The surface EMG would test my nervous system, including my autonomic nervous system. Since I hadn?t mentioned the ?autonomic? word, I couldn?t wait to see what he had to say about that one. I was taken to a room to change into a gown. While I was changing I noticed a framed saying on the wall. It had Dr. C?s first name on it, and then it went on to explain the meaning of his name. One of the explanations said he was God-like. Another talked about his healing powers. Now that I had been assured of my chiropractor?s God-like ability to heal, I giggled my way to the surface EMG machine. I was quite sure that, if nothing else, this appointment would prove to be amusing. The surface EMG was performed by one of the office girls. She put an instrument on my back that reminded me of the thing they put on you when they give you an ultrasound. It was hooked to a computer, which evidently recorded ?abnormalities." She placed this instrument on each portion of my spine for a few seconds. It was nothing like a ?real? EMG, which gives you a small shock. In fact, I couldn?t tell that this surface EMG was doing anything at all. ?So how does this work?? I asked the girl. ?Well, I really don?t know how it works. I just give the test. The doctor interprets it,? the girl answered, ?but from the look of things, you have a lot of abnormalities." Oh really? She didn?t say anything about my x-rays. Their x-ray machine was really old, ancient. ?How old is this machine?? I asked. ?Well, he bought it when he went into practice 21 years ago," she replied. ?These things cost about the same as a car. You just can?t buy one every year." I could only imagine the excessive amounts of radiation I was being exposed to with this old, ancient machine. I was sure I would be glowing by the time I got out of there. In total, they took 6 x-rays of my back. I was all ready to hear Dr. C dish out how awful my back was and how he, of course, could make me better. But I never got a chance. Instead, Dr. C explained that I would have to come back to get my results, but that he would give me an adjustment that day. The adjustment consisted of Dr. C putting a small tool on my back, which hit me with a light ?pop?. He did this three times. He told me that now my legs were the same length (gee, I never knew they weren?t?) and that he didn?t like to do too many adjustments in one visit because my body needed to process all of the new signals he had just opened up for it. He said he wanted to see me the next day. I explained that I had to work the next day and couldn?t possibly make it. I told him the only days I could come would be Tuesdays or Thursdays. ?We like to see our new patients every day,? he explained matter of factly. ?Each treatment builds on the one before it." And he was serious. He really wanted me to come every day. I did some quick calculating in my head. Each office visit was $30. So, if I came every day they were open, which was four days a week, I would be paying this guy $480. a month. Was he insane? I explained that there was no way I could come every day. He looked at me with pity, certainly disappointed that I would not receive the best of his care. Or was that a look of disappointment over the fact that he wouldn?t be laughing all the way to the bank with my cash in hand? I left my first visit to a chiropractor in disbelief. The appointment that had once been amusing, if nothing else, had turned into an awakening to the dark side of humanity. This man was using his position of authority to sell snake oil and a few pops on the back to desperate and na?ve people seeking healing. It was no longer funny. When I got home I looked up ?surface-EMG? on the Internet. I wasn?t surprised to see that there were articles about it on quackwatch.com. I also looked up ?sublaxations,? which was the title of a pamphlet Dr. C had given to me. Sure enough, sublaxations were on the quackwatch site as well. The quackwatch site even discussed the specific pamphlet published by Dr. Koren that Dr. C had given to me. The article on quackwatch concluded ?My advice about "subluxations" is very simple. If a chiropractor purports to locate and fix them -- "killer" or otherwise -- seek treatment somewhere else." Needless to say, I was not impressed with my first visit to the chiropractic profession. While I did want to go to my follow up appointment just to see what Dr. C would pull out of his hat this time, I just could not justify giving this man any more money. I never went back. -Michelle

You'll be in my prayers, Gayla. Michelle

Have you tried sleeping with the head of the bed raised and possibly drinking an electrolyte solution as your last drink before bed? Michelle

www.rxlist.com usually has more indepth info. You might also want to check to see if the makers of the med have made a website for it. Try typing in www.____(your med name).com and see if anything comes up. Hope this helps, Michelle

Hi JLB, You can read my story (and many others) at: http://www.dinet.org/personal_stories.htm Also, if any of you have been to a "doctor who is supposed to know about these things" but didn't, I'd like to know about it....especially if they are on our website. People are always asking me about doctors, and I'd like to know which ones you found helpful, and which were not so helpful. You can send me a personal email at: staff@dinet.org Take care and best wishes to all. Michelle

I can relate to what you said about this illness working some good in your life. I'm a much more caring and compassionate person now than I was before I became ill. Sickness taught me to enjoy the little things in life, and to appreciate every waking moment...especially the ones where I feel good. I hate to say it, but for me...it hasn't been all bad. It's made me a better person. Michelle

I heard a doc mention the yawning with POTS in a lecture....can't remember which doc it was, but yes...it does happen with POTS. I'm sorry to hear you aren't doing well. You are so right, you can't be positive all the time. We're here for you in the good times, and we're here for you in the bad times too. Know that there are others in this world who understand what you are going through and who who are here to see you through. Michelle

Pester away....we're happy to help you. I'm so glad the site has helped you as well. My goal in making it was to get the info out there so others didn't have to go through what I went through. Hopefully things will just keep getting better. I do hope you can find a doctor to help you one day. Where did you say you were located? Michelle

Hi JLB, I'm so sorry the appointment went nowhere. Is there any chance you might be able to travel to see a more knowledgable doctor? Michelle