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DancingLight

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  1. Sophia, I have a return of all of my GI distress--bloating, diarrhea, feeling 'toxic', lower energy (not that I have energy to begin with), constipation, etc. When I went gluten and dairy free on a fluke (b/c no doctor was helping me at the time, I tried the elimination diet), my GI symptoms that I had shrugged off as IBS (lots of diarrhea and nausea, etc) pretty much disappeared. When I 'cheat', which I no longer do b/c it is NOT worth it, I feel sick, toxic, bloated, constipated, have stomach pain, diarrhea, etc. I know saying 'toxic' sounds a bit out there, but I don't know how else to describe it. My body just feels less 'heavy' and I feel better. Not to mention the disappearance of bothersome GI symptoms. I don't 'cheat' at all anymore, it's just not worth it! I just started being able to eat soy, not sure why I can tolerate that now and couldnt' before. But, even now if I eat eggs I am in so much pain--stomach pain, diarrhea, etc. etc. so I just don't do it. Interesting note about menopause and gluten. Our neighbor was having a lof of problems with menopause and she read somewhere that going gluten free could be helpful. She did it and she feels FANTASTIC! And she looks great--has lost weight and feels really good and it is helping her so much. Emily
  2. Sophia--the Barr and Tivo are scored for splitting in half, but I can't imagine quartering EITHER brand, especially the Tivo as they are shaped very narrow. I take .1 mg 2x/day and Medicaid does actually cover it, so I don't split them. Emily
  3. Sophia, I can no longer get the name brand either. I have taken the Barr brand and the Tivo brand. Usually Tivo is a good brand all around (according to my pharmacist whom I like a LOT and really trust). However, I've had a bit better luck with the Barr I think. The Barr can get a little flaky, but I like them better than the Tivo. Still it's hard for me to sort out what's what as I have so many bladder symptoms. I am thinking about trying the nasal spray, as I remember Lois saying it lasts longer, but I need to figure out what a comparable dose would be to what I am taking now. Hope this helps! Emily
  4. Rachel, I am on a gluten free dairy free diet and it has been life-changing. I never tested positive for Celiac disease...but honestly, I don't think that necessarily means much. I think many, many people have food intolerances and it's worth a shot to go gluten free (and even dairy free as my ANS doc believes up to 30% of POTS patients are allergic to dairy--but don't test 'allergic'). I never wanted to go back to gluten just to confirm for sure whether or not I had Celiac. But early tests showed I didn't. It wasn't worth the colonoscopy either! It works for me, so I'm sticking with it and my doctors agree. Also, there is a newer more specific genetic test available for Celiac disease that DOES NOT require you to be off of gluten. I will be interested to see if in a month or so you notice any changes. What made you suspect gluten intolerance? Best, Emily
  5. Dark chocolate is a good option as a 'sweet' for me as it is possible to find dairy free versions... I'm really a vanilla girl and miss all the vanilla cakes and things... But, I try to do low carbs and low sugar, but I do splurge on 2 squares of Lindt dark chocolate a day! There are many places you can get dark chocolate covered pretzels--lots of towns have small candy stores that make them. I can't eat the gluten, so don't eat them. A big trend these days is chocolate covered potato chips! Emily
  6. Katherine, I think I'll mix things up a bit? It sounds a bit like a combination of anxiety and POTS...does that make sense? Perhaps the level of stress you are under is creating a low level of anxiety that is making you more prone to POTS symptoms, even if they are appearing in a 'new and different' way. I don't know if that makes one bit of sense, but it really doesn't sound like a full-blown anxiety attack b/c you can't identify thoughts precipitating the even, nor do you remember that 'I'm going to die' feeling that comes with a true panic attack. It sounds like one of those bizarre blips on the POTS radar that we never quite understand. But, of course, me mindful of these happening again! I am sorry that I've been missing so much going on--not realizng that you are working full-time now (Oh my!) and that G is in school now, for some reason I was thinking she had a year to go! Oops! I've had some weird just quick moments and then they go away--of hear flip flops, dizziness, nausea, etc. Hope your four day weekend is a good one... Emily
  7. 'Melissa on morphine' update! haha! Melissa somehow managed to pick up the phone tonight around 9 and leave me a voice message--I think I must have been in the bath when she called? Anyways, she had surgery around 9 this morning and she called to tell me that she thought I would enjoy a message from her since I think she is so funny on morphine. Which she is. But, I don't like it b/c it means she's in pain. She is so super duper drugged and on something else on top of the morphine which I have no clue what she said. I was laughing out loud at her message because she is so loopy. And she knew it. So, it sounds like surgery went fine, but she's in incredibly pain. The plan as of yesterday was to put in a port a cath and have a 'double' one. The only issue was whether the hospital had a double one in stock, but since she had the surgery this morning I am assuming they did. That's all folks! I'm loopy myself as we have a nine year old neighbor girl sleeping over here tonight. I'm soooo tired! LOL! I love the pics you all have posted--esp. Sophia's gorgeous pictures. Thanks all!! Goodnight, Emily
  8. Happy Birthday to you Stacey!!!!!!!! May your day be as un-POTsy as possible! LOL. Lots of love, Emily
  9. Thanks all for your continued thoughts. I was able to talk to Melissa on the phone yesterday and it was so great to hear her voice. Wow! She is not on oxygen during the day now, but is at night. She's got a plethora of tubes, wires, and lines going in and out of her. She is still in the step-down unit and receiving medical care that she is happy with. The turnaround from near death to her being able to talk on the phone is remarkable, amazing and a gift from God that she is here with us. What she goes through each time she goes into septic shock is beyond anything I can imagine and what she endures with such grace is beyond my imagination also... Lots of love to you Melissa when you get to read this! Love, Emily
  10. Rachel, I'm continuing to think of you...I'm just scrunching up my big nose and wondering what all these symptoms are! Can you picture that face??? LOL. And hoping so much that you find some answers. And get through the process of waiting patiently--so hard to do! Emily
  11. The only words of wisdom that I can offer you is that I just finished watching a documentary on the children's center at JHU and it made me feel that if I had a sick child that is where I would want to be! I feel like you couldn't ask for your daughter to be in better hands. Do you know who her doctor will be for the TTT? Also, it is such a blessing that they have it set up for parents to stay with their children now. Many folks on the board have had all of those procedures done--so a search for any of them 'colonoscopy', 'endoscopy', etc. might be useful to you. These are all fairly common procedures and I think your daughter is in excellent hands--I know that can't take away a mother's worry though! For YOUR worry, do any of the medications in the benzo class help you in a pinch? Like xanax, ativan, or clonazapam? These can be useful in such a situation where your adrenaline is in high gear. Sometimes JUST HAVING the medication on hand can prevent a spell or panic attack b/c you know you have something to help. If you have a spell, you can just maybe lie with your daughter and feel yucky together! Best to you and your daughter, Emily
  12. I got the Abbie and Costello joke! LOL! But I do like Oreo for a name! I STILL think about my other dogs, even though we have Asher...so of course they cannot replace little miss Chloe. But, I am so glad you got yourself the puppies. I'm not sure I could handle the upkeep of a puppy right now! Asher is handful enough! I can't wait to see pictures! Emily
  13. Just a quick little update on Melissa... I don't really have and 'new' news, but Melissa's mom did shoot me a quick call this evening and we caught eachother in 'real time'... I also need to say that whatever I post is filtered through Melissa's mom--and she said tonight that she messes up the medical stuff a lot so not to take it as hard fact! So, something I may have posted the other day could be off a bit! LOL! Melissa is now in a step-down unit from ICU, but not a regular room. The pneumonia has improved quite a bit--which was the biggest thing to get through immediately. At this point, in terms of the sepsis--they're back in unchartered territory. So, I don't know quite what all that means, except hoping that the abx do their job right now. Thanks for your continued thoughts! Oh, and all of you worrying about me??? No worries--worry about Melissa! I'm just pooped out from overdoing a bit, but nothing like what Melissa is fighting. Send all your sepsis-fighting battlers her way! Love, Emily
  14. Doctorguest: Thank you for taking time to respond to my post. I also never thanked you for responding to the Lyme thread ages ago. You do a very good job taking what we say, even if it is negative, and making good points. I apologize for my hositlity. In retrospect, I should have 'cooled' down before I posted. And honestly, on any other day, the article might not have hit so many buttons. I'm just literally at my wit's end right now with the pain specialist--the level of emotional stress has been overwhelming. I've been treated so poorly so many times, but this has been one of the worst. I agree with your points in your second post--and they actually put the article in perspective, which was I think my concern. You are 100% right that most patients do not do a lot of research and often just trust doctors to know what is best. It is amazing how I watch my friends, some of whom are absolutely brilliant, take NO control of their health and are not educated on issues. They call me for advice! LOL. Especially when it comes to birth control! haha! (I did sex education all through college). My dad is a genius in Sociology yet if you try to teach him how to eat well it's impossible. However, he likes to do the 'trained incompetence' thing too! HA! Also, there are so many people who are NOT blessed with an education and the opportunity to be their own advocates. And they are at the 'mercy' sometimes of doctors who don't have their best interests in mind. I think maybe the article hit me extra hard b/c my mom was not symptomatic during menopause, but her PCP told her he would only order a bone density scan if she went on hormones. He basically bribed her. It's sick. And then when the study came out, and she never had wanted to go on hormones to begin with she was very angry. In the end, we have learned that going on hormones isn't ideal--especially if you are not symptomatic. Or take them to get through the worst of the symptoms and then stop. I didn't realize the article was written towards the audience of other doctors. Sorry. Was tired and didn't catch the context/audience. Also, I know that many of us here are lucky to be able to make sense of medical information, especially since we do have an illness, that in reality, many doctors have never encountered. My PCP has told me that everything he has learned about this illness is from me. He's amazing, but he doesn't pretend to have answers to things he doesn't know. I guess what I just wish is that when a doctor sees a patient that they take into account that patient as an individual. If the patient is highly educated and knowledgable--respect that and honor that. If a patient is not educated then, by all means, please don't send them out of the office with a prescription for something they don't know how to use and don't know why they have it. Or, even for someone like my dad who is smart, but not medically smart, give him more guidance! LOL. I think I've just gotten so weary of being treated like I am stupid, even when I go in with lists or whatever. It sounds like your patients are lucky and you have what it takes to give patients what they need--time to discuss things and understand them. I wish I could say that after 9 years I've found this to be the norm rather than the exception. But I have not. I do have a GREAT team now. But, I still find those folks that are so demeaning. I wish that I could portray to you how passionate I am about healthcare. How passionate I am about health. About how my life was always about becoming part of the healthcare field. Now, I am a patient, and it is teaching me a different and new lesson about health and healthcare. I am currently watching the PBS series Remaking American Medicine. I want to say that even though I get angry or frustrated, I'm frustrated wtih the ENTIRE system. I am frustrated on behalf of doctors, nurses and patients. I feel incredibly empathy for doctors and nurses today who are not given time to do what they are trained to do: patient care. Instead they are spending their time on insurance claims and fighting to justify drugs they prescribed. I do believe that we have the potential in this country to do so much and be so much more--we have the best doctors, the best researchers and the best facilities, but they are so broken. And it is hurting all of us. You as a doctor, me as a patient, my parents as caregivers and financial supporters of me, etc. etc. I wish every doctor had the time (and was supported by who they work for) to give patients what this article describes. But, until then, we are sometimes (often) left to find answers on our own. Or at least try. And, as you concurred, we should also be our own advocates as much as we are able--whatever that capacity is given our situation. I've been blogging a lot lately and really writing a lot about my experiences and what they say about healthcare overall...and I just hope we find a better day soon. I live in PA and no doctor even wants to come here b/c malpractice laws are so ridiculous. Okay, I'm not trying to be political here, but it is really, really hard not to be. I'm soooo passionate about this! Sometimes I honestly believe that if it wasnt' for people on this forum or the research I did online I would never have found any answers. Emily
  15. Friday, yes, you can certainly get it weekly if you find that it works to help you function at a higher level. usually if it helps you, you might get a good 48 hours of feeling better. I did saline txs every other day or every third day at my worst. you will have to find what works for your body. as needed can mean a lot of things!!!! lol. as for bee's comment--each person is also different in terms of infusion time--i always had two liters over two hours--which is fast. other's who do it at home, do a slower drip over several hours. emily
  16. Hmmmm, I'm not sure how I feel about this article. Not everyone is fortunate to have a doctor who goes through that much information with them. And many doctors DO just rely on tests and don't sort through them. Or they hand you a pill and send you on your way. I don't mean to sound cynical--but if we all had doctors that had the time to talk through all of the issues on our minds, we wouldn't be forced to turn to the internet or support groups like this to figure things out. We DO have to be our own advocates and I think it empowers us to be able to read medical articles and seek out our own information. Still, I do agree 100% with the issues that the media distorts studies and doesn't give the full story. This is a huge problem. But, I also think this author doesn't give patients enough credit. I felt insulted reading the article. I already knew that stuff and I felt like he assumed that his patients--just b/c they are patients--are not educated or smart enough to make good decisions and that we should 'let go' and leave our care in the hands of the doctor and trust them. I can't imagine where I'd be if I took all the 'great' advice I'd gotten from doctors and didn't do my out legwork these past 9 years. I have an amazing doctor NOW, but I didn't for the first 6 years. The doctor I have right now I DO trust 100%, but that doesn't mean I don't dialogue and ask questions. I think it's rare to find someone like that though. No, I don't think, I know. Sorry to seem grumpy... I have been in the midst of an encounter with a pain specialist who has treated me so horribly (yelling at me, not examining me, handing me drugs, not returning phone calls, refusing to coordinate care with my specialist, etc.) that it's hard for me to feel like he knows what's best for me. As for research, I learned extensively in college how to read and understand journal articles, statistics, etc. and I felt as if this doctor did not acknowledge that we might have the capacity to sort through what the media is telling us. I've felt so much from the medical world that because I am disabled I am also dumb. That because I am a young woman I am stupid or faking this. Emily
  17. Hello all! Thank you for all your continued thoughts and prayers for Melissa (and your song Carmen!). Melissa's mom left me a long message yesterday evening, and I am sorry I am not posting until now, but I was too wiped last night. Here is what I know: As of yesterday she had been fever-free for about 24 hours (which is always good!). Getting her fever-free is one of the big hurdles. So let's hope it's still sticking at this point. It sounded from her mom's message that the pneumonia was really tough--and they drained quite a bit of fluid from her lungs which did help her to begin breathing easier. She is happy with the medical care and the lead doctor on her case seems to be willing to fight to find the source of the sepsis--however, as she knows, and he knows, he may not be able to do this. But he's willing to try. It sounded like the bacteria found in her lungs was the same one they have been finding in her gut? Also, she is on lots of antibiotics and they are still running tests and cultures. I think the past few days have been spent on the immediate crisis of stabalizing her--rather than any actual problem solving in terms of the sepsis. The big news was that they were hoping, yesterday, that as soon as a bed became available in the step-down unit from ICU Melissa would be moved. That's the news I have...I think Melissa is pretty weak and knocked out from the pneumonia and all else that is going on. It's gonna be a long road, so keep the thoughts coming... Later alligators (just don't eat Sunfishes!) Emily
  18. Rachel, I am wondering how your appointment went? I really feel like you've got SOMETHING else going on and I hope someone is willing to do the puzzle solving with you! Emily
  19. I haven't heard any updates on Melissa....the waiting for news is so hard. Emily
  20. Wow! This thread is really helping me! Thank you. My mom may make a trip to AAA to see what they have to say. Specific Van types and models are helpful to those of you who are mentioning vans. I do think a big 'ol Buick might do the trick too! Anyone ridden in the new Lucerne yet??? I'm glad to know I'm not the only one riding in the front seat with my feet on the dashboard! YIKES. I KNOW it is dangerous...it's so hard! I really appreciate all of the help! Later alligators! Emily P.S. Lois!!! So glad you are seeing my blog! I've missed you! So, yes, the wheatens get lighter as they grow...some are lighter than others though--there are Irish and American Wheatens and their coats are somewhat different. They are even darker when they are first born. It's fascinating to watch the transformation over the first year of life. I don't really think they are considered 'white'--not like a Westie gets--the name Wheaten really describes the color that they are. Although some of the Irish Wheatens are lighter and I think almost white (in my opinion) and have a very shiny coat. Oh, those puppies were so cute. (If you're reading this and are totally confused--someone other than Lois--she's referring to pictures on my blog of Wheaten puppies. (www.adancinglight.blogspot.com)
  21. Thanks all!!!! What type of van do those of you have who use vans? Since we will be renting anyways, we get to pick! Emily
  22. Friday, I recommend that you do a search on this topic, as it has been discussed in a LOT of detail in the past. I just did two searches: 1. A Topic Search for IV Fluids and came up with 9 topics about this 2. A Topic Search for IV Saline and came up with 6 topics on this So, this should give you a LOT to read and hear people's experiences. I think you will find answers to all of the questions you are asking. Also, I saw your post on Dr. Bell asking if he has done studies on this. I do not know the answer to that, but POTS patients have been using (and have been prescribed) IV Saline for a long time now as a treatment option. My understanding from my ANS specialist is that it works for some patients and we don't know why it works, but it does so that's what matters. If you do not know how to do a search...let us know. I just went to 'Search' in the upper righthand corner, clicked on 'more search options' typed inthe topics i listed above, and then said search 'topic titles only'--this last part is important or you will get a zillion hits. Hope this helps, Emily
  23. Well, we're getting ready to make the 7 hour sojourn to NY at the end of September to see my Lyme doctor. I am wondering if anyone here has found the 'perfect' car (or close to perfect) to travel in long distances. When I go short distances I just put my feet up on the dashboard. I know...not safe. And recline as far back as possible. My mom has a Subaru Legacy wagon which is pretty good, but if you recline all the way you are not quite flat and your legs can't be elevated very far. My Dad's Buick Rendevous--BLACH!--and he thinks it's the best car ever! LOL. And my stepmom's Subaru Forester...pbth on that one too. I can't really lie on my side or curl up in the back seat of a car very well b/c of my neck. So usually I need to sit in the front seat, recline as far back as possible and prop my feet up. Does anyone have a car that they do this in? Or one that they really like to travel in? We are going to have to rent a car probably, unless we just go with my mom's car, which is what we usually do, but it's not ideal. I loved it when my dad had a Buick LeSabre. We also test drove our neighbors Toyota Avalon and that was pretty good. Anyways, any suggestions for finding a car that you can lie as flat as possible on your back would be GREAT!!!!!!!!!!!!!!!!! THANKS! Emily
  24. Tammy, Melissa has been on Vancomyacin already in the past. This is the first time she has had pneumonia also. She has had many types of bacteria found in cultures and sometimes different ones each time. Really, even the best GIs are stumped and that is what is making her case so complicated b/c the sepsis seems to originate in her gut/intestines and be related to her gastroparesis, etc. I'm not explaining it very well, but it's all a big complicated situation! Thanks for your ideas though! I would think that with all the cultures they have done on her, they would have checked for those two things--MRSA and VRSA. I don't have any new updates as of this time. Emily
  25. Katherine, Giuliana is so cute skipping her nap to make something for you! I bet she thought it was HER birthday going to the amusement park and farm! Emily
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