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Hoobaid

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  1. I received an email asking to reprint some comments I made during a post. I am specious of this email. Thanks, Lori

  2. thank you for your replies. I will check with my Primary to see what she thinks. Thank you again for responses. Lori
  3. Hi everyopne. I am some what new to the forum and had a few questions. I am having problems and have been for some time, with throwing up after some meals. I went through many tests, MRIs, etc. and they found nothing. It seems to happen when my heart races to 160+ after a meal. I have been experimenting with different things that could trigger it. Larger meals, not being able to lie down after eating or very rich foods. Does anyone else have problems with nausea or throwing up? Could these be symptoms of POTS? Any feed back would be great. Thanks! Lori
  4. The only way I can do shopping is with an electric cart or have my husband push me in my transport chair. The transport chair is very lightweight and easy to get in and out of the car. Most malls have the electric cart as well. I use my pretty purple walker for short trips to pharmacy or speciality stores that are not too big. It took a while to get use to people looking at me. I don't really think they were looking, it was me. I got a handycap hang tag for my car and now I can park close. Also, have a friend or family member take you shopping. They should be more than happy to help. Lori
  5. Hey Lori, I'm actually looking for a specialist....what Dr. do you use? I live in Gainesville, but I'd be willing to make the trip for someone who knows what they're doing... ode_to_fantasy I have a cardio named Marilyn Kuo. She is part of the Clearwater Cardio. She is great but I still am trying new things with her. Have you tried Shands? I saw a few docs there about my Lupus...I wasn't too happy with them but maybe they have a good Cardio. Good Luck! Lori
  6. The heat makes it so hard for me! Having both POTS and Lupus - SLE I stay out of the heat and sun almost all of the time. When I do go to the store, etc... my husband drives me and drops me at the door and I get an electric cart or he brings the wheel chair. In the cooler months I can manage some by myself. The house AC is kept at 72 and I always have a fan on me. I live in Florida, near Clearwater and Tampa, so it is HOT 75% of the time. Lori
  7. I can honestly say I am probably the pro of 24 hour urine test! I have been doing them each month since Feb 2004, due to my Lupus Nephritis. They check the protein in my urine. I do put it in the frig (up to 24 hours after) marked "this is not lemonade". I would ask the nurse at your doctors office or at the lab for more information. Good luck! Lori
  8. This is such a great story. I have used the Spoon Theory to explain my Lupus situation to many people, I first heard of this story in the Lupus community. It works great with Dysautonia as well! Thank you for sharing with us! Lori
  9. I too am a member of this club. I have migranes about 5xs a month on an average. I retreat to the dark place that is quiet. They last for up to 2 days and the aftermath is a foggy brain. I see the auru before and vomit during the intense pain! I was told once I went through"the change" (as my Moma calls it), I wouldn't have them. Well I went through the change 2 years ago (early due to chemo) and they are still with me. I am on my third type of migrane med. Will the little man stop pounding my head, already! I hope the best for you! Lori
  10. Everyday is a roller coaster ride. Buckle up and hang on! Hi Dionna, First off, (((Hugs))). This is a hard thing to deal with. I can only say, take each day one at a time. I don't make plans, except Doctors visits. When we have company, I excuse myself and nap. This seems to give me a little more time with people. I collect Chatty Cathy Dolls. I have 29 as of today. I buy them off ebay and wash their hair, bathe them and put pretty dresses on them. It's fun for me because I had one as a child. My husband and 3 sons get a kick out of it. Another great thing I do is watch the birds, squirls and bunnies. My wonderful husband and sons set up a nice bird area outside my window. there are 2 feeders, 3 houses and a birdbath. I sit for hours watching mother nature give me a show. I love watching them! Some days I sit and watch for hours. I have a bird book and write down the observations (when I'm doing ok) and I also name the critters. I love it! I play board games to help keep my mind from getting mushy. Also, I do word jumbles (not good at cross word) and read magazines or a book is always there for me. I tried sewing but I wiped out too fast. I have RA so knitting, etc. is no good for me. Drawing is fun even though I can't draw! Have you ever thought of writing Children's books? My husband collects dvds so I always have a movie to watch. I don't get out much but I do make it to the end of my driveway to get my mail. My husband takes me to breakfast, the mall or some store I like.He pushing me in a wheel chair. Most of the time I can not use an electric cart because I lack energy and it wipes me out. I must say, I do things in small doses and know that it will take me days to recover. This is how I look at it. I can't live in a bubble. I think like a child and take things one day at a time. One other thing, Don't try to make a "to do" list for the day. Make them for a week or a month. It's not as overwhelming that way. We are all in this together, Lori
  11. I was diagnosed Oct 2005...Wow one year anniversary coming up. I had gone to the ER for dehydration and the ER doctor did a orthostatic test and fould I had it. I then followed up with my PD and then to the Cardio. It took a while to figure it out because I had so many other health issues going on. Looking back I know I've had it at least 3 years. Lori
  12. Very nice, Willow! I'm sure this took a lot out of you to post this. Thank you for sharing. (((Hug))) Lori
  13. Sophia3 Thanks for the tip! I was hitting the wrong button. Lori
  14. Thank you for your reply. My pulse rate jumps to 100-110 during and after I eat.That's about the only other time. My problem is my BP goes down so low that if I had this done where it leave me? Fainting? Lori Thank you for the welcome! Lori
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