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ginger

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About ginger

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  1. Kite#7-- Glad to hear the positive experiences. Yes, I'm pretty open about medical/physical stuff--and I talk a lot! I figure it can only help others to be open and candid. Lynna-- I'm a bit confused by the doctor's "no kid" repsonse. Maybe I'm missing something, but we saw children walking around or in wheelchairs, some in waiting areas for testing (like xray), and lots of kids waiting for physical therapy. Here's the link to Mayo's pediatric services: http://mayoclinic.org/pediatrics-rst/ I'd suggest call up there myself and asking questions about your son. If you're local doc won't refe
  2. Here's one from last week at Mayo... I was all hooked up for pelvic floor biofeedback. Electrodes on either side of the anal opening and one up on my sacrum. The idea is watch the EMG monitor and get your number as close to zero as possible. Then learn... The pelvic floor is relaxed when you feel like you're gently passing gas. Mind you both the phys therapist and a student are working with me and I'm completely naked under a sheet. Well, I rolled on my side to work on some moves in that position and sure enough, the real thing started rumbling below... the real gas. I looked at the monitor
  3. Guess what! It's me in person! I'm finally sitting down to check out the forum. I feel I'm out of touch with everyone, so forgive me if I've missed something. Whew! As you can see from my posts above, it's been a long and very intesting two weeks. Mayo today said have a stall in getting the pudendal nerve block appointment. I assume it's because it's a rare procedure and they have to locate the right dr to do it. So, waiting with suitcases out and ready. Morgan-- keep at it! I tried a number of times and couldn't get in. Went to Cleveland and sent tilt results to Mayo, to specific autonomic dr
  4. Miriam-- I'm sorry to hear your frustration, especially since I'm headed there tomorrow! Actually, your experience and suggestions from others have got me in a determined state! Blackwolf... we purposely got hotel with free hot breakfast, free wireless DSL in room, and room with kitchenette... we're going to try and keep expenses down by eating in a lot, too. Besides, I doubt after the "tilt-a-whirls," as Miriam so best put them, I'll feel like eating much. Miriam, hope you can put it all together into something more meaningful... can you have a local doc call up there and get more detail? Or
  5. Hi all-- Thanks for the questions, test requests, etc. I'm printing this out now. Ernie, I'll let you know. Thanks for the suggestions and reminders, Tearose!
  6. Avais1-- I've read several people here wake up out of sleep and have weird reactions, tachy, etc. Last night, I woke up thrashing me head violently---in my dream a big, fat, black hairy spider had fallen from the ceiling into my shirt collar, yikes!---and as I awoke my whole body shook/trembled all over harder than ever before. Heart racing, felt weird. So, I think we potsy folk aren't weird, we just have bodies that do weird things! Ginger
  7. Hi Miriam-- I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful. Want me to give Dr. Low a list for you? And your phone number!? Ginger
  8. 2dizzy4now and Rachel-- Yes! We're not crazy, just happen to "hear things." Last summer when POTS really firing up (and before my official dx) I would wake up, take a shower and then as I was getting ready I heard very loud grating sound. Sometimes it was more like a TV static and sometimes more like an engine or groan, but always very loud. It would last from seconds to minutes and would eventually go away. I do experience occassional ringing and have ear pain still, especially when I'm feeling bad/dizzy. I haven't had a loud, strange one in awhile. I wonder if it's since taking Florinef an
  9. CONGRATULATIONS! Sending you and your family warm wishes and sweet, blissful moments with your new baby girl! Ginger
  10. Evening, Tea! (pun intended) What a horrible time for you! You are so full of life and joy and compassion... I just want to scream at those who have hurt you, including our lovely SS system. I can't offer advice as I may also face the same challenges. I agree with JBL... yes, yes, Tearose, write a book! Ok, since you always brighten our days and bring some humor to the forum, I pulled out a coffee table book my mom gave me a few months ago. She inscribed it, "For those days when there's not much to smile about." It's called, "Furry Logic: a Guide to Life's Little Challenges." You'll have to
  11. Hey Blackwolf, me too! Hummm, gifted tongue and gift of gab... maybe they go together!?
  12. I have heard of changing roses, but have never tried one. Kind of like POTS, like life, always changing colors! And each color special in its own way! Do they come in climbing versions? I want to add a climbing one this year, too. One of my favorite ones I got for birthday a few years ago is "apricot beauty." I love to eat apricots and although, my favorite color is purple, I love the apricot color rose. Ohhh, fun to think about my flowers while it's snowing outside. Hey, maybe we can have a virtual DINET garden this year... everybody post pictures of their flowers and together, we'll make
  13. Nina-- Best wishes for your MRI tomorrow. I know they're easy compared to the other stuff, but it still takes time and energy! And you've had so many! We'll all be thinking of you. btw, try counting the number of bangs or clicks each set (in our mind) ... I did this once... the techs must have thought I was nuts, when I told them the number. And maybe I am! I've been following your back issues closely. Sure hope they can help you. I'm not sure my opinions on those EMGs. They hurt and I wonder how much they really tell us. I had TWO anal sphincter EMGs--major ouch--that showed damage. Well, d
  14. 1-Name: Ginger 2-Books: Well, as a former English teacher, I can't possibly just choose one. Right now, I'm going through the Dan Brown books. Also want to start another Jeanne Ray book titled, "Eat Cake"... her "Julie and Romeo" made me laugh outloud! And I need to catch up on the latest Harry Potter. 3-Movies: Oh, gosh. Much Ado About Nothing, Good Will Hunting, What Dreams May Come, Star Wars (the original 3), Harry Potter, Lord of the Rings, so many. And I must admit, all time favorite list has to include Monty Python and the Search for the Holy Grail. At Christmas, it has to include Lamp
  15. Stacey-- I hope brighter days are ahead for your dad and your family! Prayers for you all. Ginger
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