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WinterSown

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  1. I want to tell you that you are not alone, that other people experience what you do, and there is now documentation. DINET's survey from last summer is heavy on personal experiences; there are some very accurate descriptions of what we go through to get a diagnosis. I can suggest to you to read it, then print it and take a yellow highlighter and mark over everything that applies to you. Take it with you to your next appointment to share with one of your disbelievers--it will be a beginning and hopefully your doctors will get their eyes opened. Minimally, by reading through it, you will get validation that what you are experiencing is very real.
  2. I experienced that one other place and it stayed there, but not here. Fortunately, this is the group where the disbelief stopped. I'm very happy with them and they will also be going over the testing from that other place and that will end that--the other place will get the report to add to my file. The first time I met the cardiologist I came in two weeks early for my appointment--he took me, broke his lunch to see me right away. I was totally befuddled. They've been in the loop on my dysautonomia advocacy work since the beginning. I keep gaining confidence with them every time I go.
  3. My Cardiologist, EP, and Neuro all work for the same hospital and they can instantly see my records--they all work off the same e-chart. Every single thing is there; all my complaints, my tests and all the different diagnosis and treatment. I visited a new GI doctor yesterday--she also works for the same hospital and has access to all my records as well. This is the first time I've been to a new doctor that I did not have to explain what 'D' is and how I was eventually diagnosed and what is my management. I find visiting a new doctor to be very stressful because they tell me they remember the word dysautonomia from a breakout discussion group in med school, if they know it at all. I didn't have to explain anything to her and all she did was listen and ask a few questions of what I didn't cover--very thorough doctor. And instead of ordering tests she ordered a review of all the tests I've had from other doctors. I instantly liked her. I filled out multiple release sheets and everything will be scanned into my records. When I left she printed out a visit summary with my vitals, my upcoming appointments with her and the other three doctors, it lists my meds, my problems, my everything. I don't want to use the word relaxed, not yet, but having all my specialists working off the same record set has lowered my concerns about having to tell people over and over again what's wrong and then listen to their denial. #win
  4. It's a good recipe with its own gooey sauce underneath. I'd like to try it next with orange rind and sub molasses for some of the maple syrup. Hubs and I are enjoying my new found hobby of making easy food. Simple really is best.
  5. Currantly, butter and vanilla. This is Hasty Pudding, it is one of the most delicious things I have ever eaten in my life. It's a new recipe from an old cookbook, The Illustrated Encyclopedia of American Cooking, by the editors of Favorite Recipe Press, 1983. I've been collecting old recipe encyclopedias and I ❤️ this one. It's very super easy. Took only minutes to make. Hasty Pudding (listed among raisin recipes) 1 c flour 1 1/2 tsp baking powder 1/2 tsp salt 1/4 c packed brown sugar 1/2 c milk 1 tsp vanilla 1/4 c melted butter 1/4 c raisins (I used currants) 3/4 c maple syrup Sift flour, baking powder and salt: add brown sugar. Blend in milk, vanilla and butter; pour into 1-quart buttered casserole. Sprinkle with raisins. Combine syrup and 1/3 c water in saucepan; bring to boil. Pour over batter. Bake at 350 degrees for 35 minutes. Yield: 6 servings.
  6. Godsend drug! I first started taking low-dose 2mg diazapam for vertigo but it has helped me with reading as well. It's a muscle relaxant and helps keep my eyes from jumping about so I can read longer, it's also helped when my hands shake from blood pooling. It takes the edge off of stress nice too. I usually bite my pills in half and start with one mg and that's fine enough, sometimes I take the second half but then I must nap.
  7. Hormonal? hmmm. I developed symptoms well past my child-bearing ages. Many of us did. It's not a disease found only in women of child bearing age. Over 30% are diagnosed post menopausal. Doctors need to look at a wider spectrum of women, not just a wider spectrum of symptoms.
  8. My son has been getting zapped in an eye since he was four, he is now 35. He has been 'drilled' thousands of times. Ask the eye surgeon to do the procedure in a hospital or surgical center and knock you out. They will strap you into a chair with your head held in place. If stress is causing your eyes to jump around or you to faint then you need to be unconscious or in 'twilight sleep' for the laser, ask how it can be arranged. I don't understand your comment about that you can't go more than 30 feet from a hospital or you will need to have emergency surgery. You may be more worried than you need be.
  9. Call your primary and ask to come in and pee in a cup. It could be temperature related, you might have not drunk enough fluids for a while, or you ate something that is darkening your pee like asparagus. If you have it for several days you can be concerned but if its changing after a day or two then it's something to call or talk about to learn to avoid and not rush in for a visit.
  10. That's pretty much most of my daily list, except for the ptosis--sorry you have that :-( This is all part the experience. I often wear sunglasses and also wear noise cancelling headphones which cut down on a lot of street or store noises when I must be outside.
  11. Your cardiologist is discussing mythology. Supposedly teens could outgrow POTS, but they can't and none of us can. However, remission is possible. For your whole life you can swing in and out of symptoms. Please refer your cardiologist to DINET's survey where it shows, out of over 200 respondents, that less than 2% get better. You can also print out the survey and use a highlighter throughout to show anything similar to your experiences and bring that to your doctor. You are not alone! The survey is in PDF form.
  12. You have some symptoms that are familiar to me, I faint and remain conscious; it's called a Drop Attack. It's often associated with hearing disorders because of loss of balance. I had all the tests and they said my ears are fine so it could be from dysautonomia. You can read up about it and talk to your doctor--there are some different causes, my neuro sent me to the ENT. The EP, at the same time, slowly cut some of my drugs to raise my base vitals so that when my numbers do crash it's from a higher set and I'm less likely to collapse. I also go to PT for balance and strengthening. I am a lot better. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2639899/
  13. According to their website The Dynamic Neural Retraining System™ is a natural, drug- free, neuroplasticity-based healing program that can help you recover from Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Chronic Lyme Disease, Food Sensitivities, Anxiety, Chronic Pain, Postural Orthostatic Tachycardia Syndrome and many other conditions Many of these conditions are related to a chronic stress response... I've been helped a lot just by going off of supplements and getting what I need from all I eat and drink. I didn't pay extra for it and it was advice from my cardiologist, not a dot com. Before you drop a nickel on retrainingthebrain perhaps get an opinion about their program from a neurologist or the better business bureau because if it sounds to good to be true it usually is.
  14. Wonderful. I love their long droopy flowers and such scent. I am happy for you. There's a public garden near here with one over a century old, they live a long time so good things are worth the wait.
  15. Causes of dementia or loss of clarity and recall are unique to the individual, your health and history add into that. I remember asking her about long term partial deoxygenation and she said that was not my cause. I have vertigo and sensory overload issues that can also make me wig out, there's an assortment of scripts; I have a lifetime of reasons that are possible so we treat the symptoms. I do things that I love doing, that's the key to success. DINET just published its quarterly online newsletter, they published an article about how I am succeeding with a self-styled neurotherapy program, it's called 'Walking out of the Fog'. It's a good edition, enjoy.
  16. I made another one last night, I made a one bowl apple cake but it's already gone. I had one slice. One slice. :-(
  17. If you read the study they've yet to determine that it always happens. The fog can be brutal at times but it can and does lift. I've dealt with it in my own way and have improved a lot just by studying and being creative. Talk to your neuro about setting up a program ton help lessen the fog and do more. We will determine whether the disease process always damages neurons in the brain (resulting in a movement disorder and/or signs of dementia) or can, in certain cases, remain confined to the autonomic nerves outside the brain.
  18. I have this same issue, I sometimes am unable to look at electronics for more than a few minutes. Flashing ads and suddenly playing videos just wear me down too fast. I think it's related to sensory overload. I've added some pop-up and ad blockers and I do often sit with a timer here at my computer. I put it on for ten or fifteen minutes and walk away when it rings. I do some other stuff or go lay down. When it's very bad I need to take a muscle relaxant, I have a low-dose script for valium; I can get more work done online but I must lay down later.
  19. “It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve. My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was enough of a rest to bring back some clarity because I remembered the phone in my pocket. But before I could even call, I looked up and there he was. He had come back for me. I was shaken to the core. This event became a part of my history and one of the factors in my dysautonomia diagnosis. A few weeks earlier, Dr. X had ordered several head scans and a round of memory testing. The results were mixed. Physically there was nothing wrong that they could see in the MRIs but the memory testing showed I had some problems with recall and acuity. I knew I could not figure out how to put a tray of colored blocks into patterns fast enough. Sigh. She said, “ Too early, it’s too early for that for you”. We talked about my life, what I had done, what I would like to continue doing and what was special to me. I needed to get my brain juices flowing again. I am not sure how she got me to think this was my idea but Dr.X is a master of beneficent persuasion. I told her I read every day, I love adult coloring and taking photos with my cellphone. I had set my fate; it was like that great line from Ghostbusters, “You have chosen the destroyer.” Well, I had chosen. She liked me reading every day but suggested it should be non-fiction and subjects that are new to me. She liked adult coloring but only if I drew my own line drawings to fill in. Photography is a great hobby, but I needed to take photos in unfamiliar places. She also threw in making things by hand. I liked the thought of all of this and I accepted it. I think that accepting was the most important part. She recommended (with twists), what I already loved to do. Since I will be doing this forever, it is important to love your therapy. I love gardening and horticulture and fully embraced university extension factsheets - short and sweet, info-laden pages about plants, animals, or foods related to our lives and environment. I average about a half-dozen a week. It’s amazing how fast you can tear through a few pages about the flowers, herbs, or pollinators you love. There are a zillion topics to choose from and all non-fiction. My other joy has been cooking new recipes from old cookbooks. Again, reading. My thrift-store cookbook addiction has finally paid off. Right now I’m learning how to cook for my freezer which equals a fast and healthy dinner instead of take-out when I want to crash instead of cooking. Last week I froze polenta wedges and bags of cooked chicken strips I made on the electric grill. The week before I did some sweet potato puree and bags of chopped onions. I’ve got bags of frozen rice and cooked noodles tucked away. I make at least a dozen servings of each recipe so it’s worth the “spoons” I use for prep time. We’ve cut down greatly on takeout so overall this is a big plus. We eat a lot healthier and we keep our take-out money in our wallet. Please tip the cook. Another big gain came from reading DINET’s Facebook feed. Not every article is about dysautonomia and I enjoy reading the personal perspectives. More than anything else, I’ve gotten an education in how dysautonomia affects our lives. I can now dialogue with my doctors and better explain to family or strangers what we experience. Taking photos is easy - getting someplace new is not. My cardiologist already prescribed a daily walk -either outside or at the mall. I limit driving - no joy rides - just to the doctor or the supermarket across the street. I don’t go far. I park on top of the mall’s highest lot and took panorama shots of the skyline in the distance. I go downstairs and inside and take sienna tints of shoppers rushing by my bench. I go into to the dressing room and do a personal photo shoot of myself in fashions I would never buy. Well, not all the pieces! I take different photos of different things in different places. Mission accomplished. Each day I walk my two dogs separately (four walks a day!). I used to keep the phone in my pocket, but now it stays in my hand. I take pictures of what thrills me that moment - bark, molds, flowers, critters, clouds in the sky shaped like ducks. I usually delete more than I save - but the ones I save are keepers. Neurotherapy can do more than give you clarity; it improves your life. You are better able to interact with people and the world again. I’ve heard knowledge is power, but in this case, knowledge equals confidence. I don’t know what I look like to strangers when I’m grasping for words. It bothers me deeply that people see me impaired. Do they think I’m drunk or witless? Am I allowed out by myself? But now, I no longer find myself searching so often for words in a conversation. I am not hesitant to speak because I can find many words in my head, not just the one I lost in thought. Being able to have a conversation go to its end is something so many take for granted. I did, too. Learning about my condition has given me a greater vocabulary. I have a larger arsenal of words and phrases to bring to mind when I am suddenly at a loss for a specific word. In the last few months, I feel like the fog is clearing. I can recall discussions much better—I’m no longer asking my Hubs what he wants for dinner six times in a row. I think the last few months have been some of my most productive since my symptoms showed up three years ago. I’ve made advances in clarity and cognition. I can articulate better and I have more energy for “spoons” saved. We eat better and the dogs love it when I pick up that camera. And Hubs is sure happy--who doesn’t love a dinner like grandma used to make?! Editor's note: AdultColoringBook_TrudiDavidoff.pdf Download and enjoy! Return to newsletter
  20. “It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve. My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was enough of a rest to bring back some clarity because I remembered the phone in my pocket. But before I could even call, I looked up and there he was. He had come back for me. I was shaken to the core. This event became a part of my history and one of the factors in my dysautonomia diagnosis. A few weeks earlier, Dr. X had ordered several head scans and a round of memory testing. The results were mixed. Physically there was nothing wrong that they could see in the MRIs but the memory testing showed I had some problems with recall and acuity. I knew I could not figure out how to put a tray of colored blocks into patterns fast enough. Sigh. She said, “ Too early, it’s too early for that for you”. We talked about my life, what I had done, what I would like to continue doing and what was special to me. I needed to get my brain juices flowing again. I am not sure how she got me to think this was my idea but Dr.X is a master of beneficent persuasion. I told her I read every day, I love adult coloring and taking photos with my cellphone. I had set my fate; it was like that great line from Ghostbusters, “You have chosen the destroyer.” Well, I had chosen. She liked me reading every day but suggested it should be non-fiction and subjects that are new to me. She liked adult coloring but only if I drew my own line drawings to fill in. Photography is a great hobby, but I needed to take photos in unfamiliar places. She also threw in making things by hand. I liked the thought of all of this and I accepted it. I think that accepting was the most important part. She recommended (with twists), what I already loved to do. Since I will be doing this forever, it is important to love your therapy. I love gardening and horticulture and fully embraced university extension factsheets - short and sweet, info-laden pages about plants, animals, or foods related to our lives and environment. I average about a half-dozen a week. It’s amazing how fast you can tear through a few pages about the flowers, herbs, or pollinators you love. There are a zillion topics to choose from and all non-fiction. My other joy has been cooking new recipes from old cookbooks. Again, reading. My thrift-store cookbook addiction has finally paid off. Right now I’m learning how to cook for my freezer which equals a fast and healthy dinner instead of take-out when I want to crash instead of cooking. Last week I froze polenta wedges and bags of cooked chicken strips I made on the electric grill. The week before I did some sweet potato puree and bags of chopped onions. I’ve got bags of frozen rice and cooked noodles tucked away. I make at least a dozen servings of each recipe so it’s worth the “spoons” I use for prep time. We’ve cut down greatly on takeout so overall this is a big plus. We eat a lot healthier and we keep our take-out money in our wallet. Please tip the cook. Another big gain came from reading DINET’s Facebook feed. Not every article is about dysautonomia and I enjoy reading the personal perspectives. More than anything else, I’ve gotten an education in how dysautonomia affects our lives. I can now dialogue with my doctors and better explain to family or strangers what we experience. Taking photos is easy - getting someplace new is not. My cardiologist already prescribed a daily walk -either outside or at the mall. I limit driving - no joy rides - just to the doctor or the supermarket across the street. I don’t go far. I park on top of the mall’s highest lot and took panorama shots of the skyline in the distance. I go downstairs and inside and take sienna tints of shoppers rushing by my bench. I go into to the dressing room and do a personal photo shoot of myself in fashions I would never buy. Well, not all the pieces! I take different photos of different things in different places. Mission accomplished. Each day I walk my two dogs separately (four walks a day!). I used to keep the phone in my pocket, but now it stays in my hand. I take pictures of what thrills me that moment - bark, molds, flowers, critters, clouds in the sky shaped like ducks. I usually delete more than I save - but the ones I save are keepers. Neurotherapy can do more than give you clarity; it improves your life. You are better able to interact with people and the world again. I’ve heard knowledge is power, but in this case, knowledge equals confidence. I don’t know what I look like to strangers when I’m grasping for words. It bothers me deeply that people see me impaired. Do they think I’m drunk or witless? Am I allowed out by myself? But now, I no longer find myself searching so often for words in a conversation. I am not hesitant to speak because I can find many words in my head, not just the one I lost in thought. Being able to have a conversation go to its end is something so many take for granted. I did, too. Learning about my condition has given me a greater vocabulary. I have a larger arsenal of words and phrases to bring to mind when I am suddenly at a loss for a specific word. In the last few months, I feel like the fog is clearing. I can recall discussions much better—I’m no longer asking my Hubs what he wants for dinner six times in a row. I think the last few months have been some of my most productive since my symptoms showed up three years ago. I’ve made advances in clarity and cognition. I can articulate better and I have more energy for “spoons” saved. We eat better and the dogs love it when I pick up that camera. And Hubs is sure happy--who doesn’t love a dinner like grandma used to make?! Editor's note: AdultColoringBook_TrudiDavidoff.pdf Download and enjoy! Return to newsletter
  21. There's a list of drugs that have interactions with melatonin. https://www.drugs.com/drug-interactions/melatonin.html
  22. Sometimes I need to sit and wash my hair under the streaming tub spout instead of the shower. Or sometimes a shower has to turn into a tub and I pull up the plug and finish by bathing instead of showering. I have very dry skin lately so I now take some body oil and squirt it onto the wet washcloth before I get out of the tub and rub myself up and down very quick. It's been helping with the dry skin.
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