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WinterSown

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  1. I didn't grow any tomatoes this year but I had the energy one weekend to move around some hostas to the patio edging, it's pretty. I do have to get someone to come and mow and weedwack, I'll try this weekend myself but long-term I need a landscaper to do a weekly service. I still am enjoying the herb garden. It has gotten very overgrown and gone to flower; it has attracted a zillion butterflies and all sizes of pollinators. So nice to sit and listen to the birds, the chimes and watch the butterflies.
  2. I have never been one for vitamin supplements other than a one a day, but this week I bought a bottle of Calcium, Magnesium and Zinc, plus (in very small letters) Vitamin D3. Is it going to really help beyond being an emotional placebo I don't know yet but I'll try taking them for a week or so then decide.
  3. You are my twin, I am not alone! I had the number thing and I was supposed to drive to the supermarket around the corner and then I was in Syosset across the county. A friend posted a recipe for baked parmesan potatoes that I can make with the food processor and bake in the oven in a casserole, I'm gonna try that tonight--I have to do fast recipes or my legs get wonky, if I'm gonna drop it's in my kitchen. New recipes are great for my head and Hubs doesn't mind it at all. I went to the thrift store on dollar-a-bag book day and got a bunch of retro cookbooks, some for the pressure cooker (got a hotpot) and some for the food processor. I love reading them--it's like cooking my Mom's recipes. I share a lot of extension articles with the Winter Sowers, I read them first so I get some daily learning--extension articles are short but loaded with information. Last year, before I completed Vestibular PT I drew line art for adult coloring, after that I lost the urge to draw--it helped with a lot, they're funny birds and it was a release for me. I am so glad you mentioned continuing community education. You can take a short and sweet one-night course or something that is a few weeks longer, and some with certificates. It doesn't matter if you are learning art or mechanics, discography, Italian cooking, ESL, or a business skills course--it's important that you are learning something new but you are also in an environment where you learn through osmosis. You learn things, related or not to the class, from the other students there too. Each community usually has schools or libraries that send out a list of courses, where they are available and with a free to $$ price range. County and town parks have classes and exercise programs. If you are a senior there's a break in the price practically everywhere for continuing ed. Always, ALWAYS sign up for the exercise classes ASAP if you are doing jazzercise, yoga or zumba, etc. They sell out immediately as they are a bargain compared to a gym and no contract either. Win. T
  4. There is some available information. You must be evaluated. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117678/ I have short-term memory problems. I was evaluated at Cushings/Chiari Institute in Great Neck, NY. They found that I do not have dementia from deoxygenation due to any erratic blood flow or pressure problems, I've also had my brain scanned and xrayed a lot, it's been thorough. My neurologist has me on a neurotherapy program where everyday I need do something creative with my hands or learn something new--this is to help me build new pathways to learning and memory restoration. Fortunately, everything is getting in but I am having problems with recall--I'm initially looking in the wrong file draw. As an example, since I had to retire, everyday's routine and the same. If you ask me I don't know what day of the week it is and need to look at something electronic, like my phone or computer, to read the date and time. That's okay, she said that's fine and not to worry there. It's when I no longer know where to look up the date and time that I will need a lot more help. Her neurotherapy program is working, I do have more recall and can do a lot more advanced studies but I will never be able to go back to work. I own the company, it's not fair to my clients that I am so brainfried. I fired myself :-(
  5. I'd Get in the tub and soak with some epsom salts, whatever temp you prefer. I always find this helps me relax. Also, I've been making instant broth in the microwave and diluting it to half-strength with cold water. I get a warm, hydrating salt shot that tastes like soup but doesn't gross me out with being too salty. Eat white carbs for a while, they're easy to digest and are also comfort foods. Give yourself a break and the stress can taper off. I hope you feel better soon.
  6. I was diagnosed with vertigo and have completed Vestibular PT which helped so very much. I also take 2mg valium which reduces a lot of the vertigo symptoms. Your primary can do a Dix Hallpike maneuver in the office to determine if you do have vertigo. I hate HATE this test but it has been immediately conclusive with me each time it's done: https://www.youtube.com/results?search_query=dix+hallpike+maneuver The PT doctor did more than rearrange the rocks in my head, lol, he had to reposition the crystals and it took several sessions of manipulation. He also trained me for balance, strength and endurance. I don't trip like I used to, the world no longer tilts, and I'm strong enough to use my body strength to keep me erect if I feel like I'm going to fall. It's been a big difference for me and I cannot say enough good things about Vestibular PT. In the meantime, if you can take an extra pill, I have found Bonine to be a good OTC drug for motion sickness--it gets rid of a lot of brain fog as well. I hope you feel better soon. T
  7. My neurologist has me on a therapy I call 'Muse it or Lost it', where I have to learn new things everyday, or make things with my hands, write anything, if I want to adult color okay but I have to do my own line drawings first. I try new recipes (big fave with Hubs!), watch educational videos, and otherwise try to be creative and exercise my brain to create pathways through or around the fog. I'm starting to process my diagnosis and am working through that wanting is not the same as having. I wrote a poem. The Day After. Laying back upon my bed, My right leg up, my toes wide spread. My hands are pressed hard to my eyes, They cannot move, not side to side. Flashing lights in back of my head, With inaudible sounds loud as words unread. I twist and contort until the waves subside, I’ll sit, then I’ll stand, I’ll step forward in stride. I am up. It is over. I go back to my life.
  8. I can drink a glass of pInot grigio and feel awesome, a glass of pinot noir will make me turn as purple as that wine. Tolerance is going to be individual but I find a glass of white wine and a little something salty to nosh on is as good as medicine. Happy hour really is!
  9. By Trudi Davidoff Though an outlier, let me say that I am grateful to have been diagnosed in a little over two years since becoming noticeably symptomatic. I didn’t notice the loss of appetite or thirst creeping up on me or the constipation causing damage and created a fissure which is a small rip or tear in the anal canal. This was my introduction to things not being as they should be. As I learned more about dysautonomia, I was surprised at the length of time and the number of doctors it takes to get a diagnosis. I’d seen only about a dozen specialists not counting those at the imaging centers who give and interpret so many of the tests. Despite being older, my diagnosis numbers of 27/12--twenty-seven months and twelve doctors is better than average and it inspires me to help others through advocacy and education. Last month, I gave the office that treated my fissure a copy of The Dysautonomia Project for their in-house medical library which they kindly and graciously accepted—they were among the many doctors who had not yet heard of POTS. I had never heard of POTS; I had never heard of dysautonomia. But as I began reading and learning about it, I often saw the phrase ‘of child bearing age’[1] in vetted medical descriptions. But this wasn’t me. I’m going to be 60 soon and it’s been well over a decade since my last menstrual cycle. I went looking for answers but came away only with more questions. How, when a syndrome is so new to the medical community, does a particular age group get segregated away from the others? POTS was named in 1993[2]. In so short of time has enough data been gathered to support post-menopausal women being given an extra hurdle to a diagnosis? How many women have been symptomatic and accurately described their condition to their primaries, gynecologists, neurologists and cardiologists yet were told they had anxiety and were given a prescription for a low-dose anti-depressant and sent home with a pat on the shoulder? “There, there honey, you’ll feel better soon.” Sigh. Women are more than 2.5 times likely to be prescribed anti-depressants than men. [3] It's time for a change. How do we begin to identify these women no longer of child-bearing age and get them to come forward so they can be accurately diagnosed? They may be stigmatized by being wrongly diagnosed with a mental illness in their younger years and do not wish to bring themselves continued condemnation, further frustration—and even the likelihood of feeling yet again, ostracized. What medical practitioner will become the most important care provider for the post-menopausal dysautonomia patient? Would it be the cardiologist to help with blood pressure, the neurologist to help with the brain fog, or a nutritionist to help with the nutrition, hydration and eating habits that are so vital towards preventing syncope and pre-syncopal symptoms. Do we see a physical therapist to keep our bodies mobile and prevent deconditioning, or a primary care doctor specializing in geriatrics to assist our aging bodies and knowledgeably send us to the right dysautonomia-educated specialist for advanced help? Ultimately, all doctors should have increased training in dysautonomia related to their field and their education should be without the built-in hurdle of age-related bias. As changes occur, I would like to see the phrase ‘of child-bearing age’ removed from the medical descriptions of dysautonomia. I feel there is much more research to be done and answers found before we instill a cultural sense that POTS and other OIs are mostly a problem of teens and young women. No person, male or female, needs their age used a barrier to a speedier diagnosis. It’s time for a change. How do we combat this problem of medical age discrimination? We begin by identifying these women no longer of child-bearing age and encourage them to come forward where they can be accurately diagnosed. They may be stigmatized by being wrongly diagnosed with hysteria or depression in their younger years and do not wish to bring themselves further frustration and condemnation. They were already underserved, misdiagnosed and insulted by the medical community, who can blame them for wanting to avoid further ostracizing? So how do we begin to help these patients? To learn more, we are making a small, eight question survey available. It is a beginning to finding gaps in diagnosing women and creating relevant age-related maintenance programs. Thank you for participating. The results will be published on the dinet.org website i.n September of 2017 Let the change begin. Editor's note: This survey is sponsored by DINET and will take less than 2 minutes to take. Please consider helping Trudi and DINET understand more about dysautonomia. Thank you. [1] http://www.dysautonomiainternational.org/page.php?ID=30 [2] http://www.dysautonomiainternational.org/page.php?ID=30 [3] http://www.health.harvard.edu/blog/astounding-increase-in-antidepressant-use-by-americans-201110203624
  10. By Trudi Davidoff Though an outlier, let me say that I am grateful to have been diagnosed in a little over two years since becoming noticeably symptomatic. I didn’t notice the loss of appetite or thirst creeping up on me or the constipation causing damage and created a fissure which is a small rip or tear in the anal canal. This was my introduction to things not being as they should be. As I learned more about dysautonomia, I was surprised at the length of time and the number of doctors it takes to get a diagnosis. I’d seen only about a dozen specialists not counting those at the imaging centers who give and interpret so many of the tests. Despite being older, my diagnosis numbers of 27/12--twenty-seven months and twelve doctors is better than average and it inspires me to help others through advocacy and education. Last month, I gave the office that treated my fissure a copy of The Dysautonomia Project for their in-house medical library which they kindly and graciously accepted—they were among the many doctors who had not yet heard of POTS. I had never heard of POTS; I had never heard of dysautonomia. But as I began reading and learning about it, I often saw the phrase ‘of child bearing age’[1] in vetted medical descriptions. But this wasn’t me. I’m going to be 60 soon and it’s been well over a decade since my last menstrual cycle. I went looking for answers but came away only with more questions. How, when a syndrome is so new to the medical community, does a particular age group get segregated away from the others? POTS was named in 1993[2]. In so short of time has enough data been gathered to support post-menopausal women being given an extra hurdle to a diagnosis? How many women have been symptomatic and accurately described their condition to their primaries, gynecologists, neurologists and cardiologists yet were told they had anxiety and were given a prescription for a low-dose anti-depressant and sent home with a pat on the shoulder? “There, there honey, you’ll feel better soon.” Sigh. Women are more than 2.5 times likely to be prescribed anti-depressants than men. [3] It's time for a change. How do we begin to identify these women no longer of child-bearing age and get them to come forward so they can be accurately diagnosed? They may be stigmatized by being wrongly diagnosed with a mental illness in their younger years and do not wish to bring themselves continued condemnation, further frustration—and even the likelihood of feeling yet again, ostracized. What medical practitioner will become the most important care provider for the post-menopausal dysautonomia patient? Would it be the cardiologist to help with blood pressure, the neurologist to help with the brain fog, or a nutritionist to help with the nutrition, hydration and eating habits that are so vital towards preventing syncope and pre-syncopal symptoms. Do we see a physical therapist to keep our bodies mobile and prevent deconditioning, or a primary care doctor specializing in geriatrics to assist our aging bodies and knowledgeably send us to the right dysautonomia-educated specialist for advanced help? Ultimately, all doctors should have increased training in dysautonomia related to their field and their education should be without the built-in hurdle of age-related bias. As changes occur, I would like to see the phrase ‘of child-bearing age’ removed from the medical descriptions of dysautonomia. I feel there is much more research to be done and answers found before we instill a cultural sense that POTS and other OIs are mostly a problem of teens and young women. No person, male or female, needs their age used a barrier to a speedier diagnosis. It’s time for a change. How do we combat this problem of medical age discrimination? We begin by identifying these women no longer of child-bearing age and encourage them to come forward where they can be accurately diagnosed. They may be stigmatized by being wrongly diagnosed with hysteria or depression in their younger years and do not wish to bring themselves further frustration and condemnation. They were already underserved, misdiagnosed and insulted by the medical community, who can blame them for wanting to avoid further ostracizing? So how do we begin to help these patients? To learn more, we are making a small, eight question survey available. It is a beginning to finding gaps in diagnosing women and creating relevant age-related maintenance programs. Thank you for participating. The results will be published on the dinet.org website i.n September of 2017 Let the change begin. Editor's note: This survey is sponsored by DINET and will take less than 2 minutes to take. Please consider helping Trudi and DINET understand more about dysautonomia. Thank you. [1] http://www.dysautonomiainternational.org/page.php?ID=30 [2] http://www.dysautonomiainternational.org/page.php?ID=30 [3] http://www.health.harvard.edu/blog/astounding-increase-in-antidepressant-use-by-americans-201110203624
  11. I had the TTT and I didn't faint. I still was diagnosed with POTS. My neurologist told me to exercise my brain everyday as neurotherapy to lift the fog. So, each day I learn something new, or I make something with my hands, write poetry or fiction (haikus are clever and quick), I am allowed to adult color but only if I make my own line drawing first, etc. In other words, she is helping me create new pathways to restoring my short-term memory loss and help blow through the fog. It is working. She said it would not be fast and that is true, but each month I can do a few more things than the month before. Today, I am challenging myself by making a new recipe from a cookbook I bought at the thrift store. The first challenge is getting to the store to get the stuff and come back home with enough energy to make it. I hope to succeed. The best part about this is that it doesn't cost an extra nickel from the budget.
  12. We frequently all hit the sack and are drifting off in moments. I had insomnia again last night and when walking through my kitchen felt as if my internal power had blinked--like the electricity in the house can blink during a fierce thunderstorm. I was able to get to bed soon afterwards and got up at normal time, had a cup of coffee but had to go lay back down right afterwards--felt ugh. I woke up some hours later but it didn't feel the same as my other sudden naps. It's hard to describe but my overwhelming sense was fear, I did not feel rested from sleep but instead felt more like my power switch had been turned back on. I do have a scheduled appt with my cardiologist in about ten days. If anyone else has had a similar sensation how do you dialogue that with your doctor? I have to tell him I think I may have fainted but I'm not sure as there is no physical evidence, well still, hooray then for that. In the past he's asked me if I've fainted and I've laughingly told him how would I know if my head isn't bruised. I have fainted in the past and wound up looking head on at the dog bowls on the kitchen floor, but I never did it on my bed--at least, I don't think so. Right now I am feeling much better but will pay attention and if it happens again I will see if I can reschedule sooner and I assume yes. If any of you have had such an event please let me know if I am on point with my description. Thanks, T
  13. Plas, I am so sorry you are experiencing these symptoms. At Sjogrens.Org I found a page with a list of suggestions to help you through your symptoms. I have been reading them and many will apply to all dysautonomic patients., it's a motherlode of advice--a lot of it common sense, a very easy read too, and it is all on the same page: https://www.sjogrens.org/home/about-sjogrens/survival-tips I hope you feel better soon! T
  14. I totally get this as I have the same problem. Intense vibrations and visual motion can set me off. Last year, before I was diagnosed, I had--what we assumed then--was a panic attack at the Columbus Zoo. I was already being treated for vertigo and take low-dose valium when I need it. It works great for taking the bite out of stress too. Anyway, this panic attack led me to meeting my current neurologist who has me on 'Muse it or Lose it" for neurotherapy, it is slowly lifting the fog. I remain very sensitive to vibrations and bright light. I have insomnia and used to fight it and try to go back to bed but becoming a night-owl has helped. Less light, less sound, less vibrations, less movements, less everything. I am an autodidact and do not know my IQ though when I was much younger I was determined untestable. I recently had memory testing at a local institute and it started off with the intern getting POed with me, lol. She was doing correlations and asked me 'Two and Seven?' I answered immediately in rapid staccato," 2+7, 27, three cubed, magic number nine!!!" She looked annoyed, had to remove several tests from her stack and add in a few others. She did say unhappily, "You high proficiencies...I was warned." Great. I got tested by an intern with an attitude. A month later I went to my neurologist to go over the test but the institute had not only forgotten to send the results over, they hadn't even completed it yet and needed another week to finish the assessment. I try to have a sense of humor...
  15. On my way to PT this morning was listening to Everybody Hurts by REM. It made so much sense. Hold on!
  16. Coffee and valium, potato chips and candy, weed and whiskey. When you are having a bad attack you will throw anything against the wall to see if it sticks. Cannabinoids may or may not bring you relief, it's individual. I live in NYS and it's barely legal--the drs seem almost paranoid about prescribing it. We're currently dialoguing between our family primary and a pain management doctor for an approval so we can get edibles for my 86yo MIL who does not want more hip surgery and can't smoke or she will hack and loosen the bolts that holds her bones together, she has to sit still. Does it help pots? Minimally, it will be an emotional panacea. How it chemically reacts with your body is unique to you. http://www.medicalmarijuanainc.com/autonomic-dysfunction-medical-marijuana-research-overview/ Search results from Goole Scholar: https://scholar.google.com/scholar?q=cannabinoids+and+dysautonomia&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwi84IPjn97UAhWp24MKHQcABxYQgQMIIjAA
  17. My doctors have never discussed a recovery or remission date with me. I am doing neurotherapy and was told it would help lift the fog and that it would take a long time but it would happen. I am having some improvement but I am still a long ways from whom I used to be. POTS effects everyone differently so what and how you learn to control your symptoms will be unique to you. I just got back from a long walk with the dog and I am sitting here eating potato chips, I cannot decondition and salt helps. I wish you luck and a speedy diagnosis. T
  18. I can be symptomatic anytime of day but usually the 'bad ones' are in the morning. I lay on my bed feeling like I am drowning from a stormy surf smashing me around inside my own body. I'd rather not drink gatorade or broth as soon as I wake up but if I must I must. If you are similarly symptomatic in the morning what do you do to minimize the sensations?
  19. I exercise everyday. I walk my dogs which I do well with, especially late at night when it is darker and there are less distractions. Last year, prior to diagnosis, I was getting dizzy. I was diagnosed with Vertigo and did a course of Vestibular PT which did fix the rocks in my head, lol, but also made me stronger and taught me some endurance. This year, after diagnosis I had now also to do a round of Pelvic Floor PT and feel even stronger--this time around the PT doctor was aware that I had POTS so he tailored my exercises to assist me further. Kudos to my PT doctor. At home I have a balance board, stretchy straps, weight balls, resistance rings. large inflated bouncy balls, and leg weights. I certainly don't use them all everyday but I do a few things daily. I also like to put on the music and dance. I am far better off exercising, it's been vital to me getting up off of my bed faster. I can walk father, I have greater endurance and can handle pre-syncope much better than before. And, I look pretty good too. Physically there has been some toning and for me that is an emotional upper. It's a win/win. I'm stronger and I feel prettier.
  20. I got a chronic fissure from constipation. It was my first sign that something was wrong. I needed surgery to close the tear. I do not do well with miralax, it is too strong even when I use a less than full dose. I currently take a stool softener with my evening meal and a dose of metamucil before I go to bed. I have a lot less bloating. I have had repeated problems with IBS and/or rapid gastric emptying and after some testing I am now doing pelvic floor PT to help with retention issues. When I am feeling 'stuck' I use a glycerin stick and that generally works within fifteen minutes, you may have to repeat a few times initially to get yourself back on track. Try to drink more water if you can, my colorectal surgeon suggested I cook everything that I was eating raw and then slowly reintroduce raw food to my diet. Cooked fruits and veggies are easier to digest and pass through quicker than raw foods. Learn to love wet food like stew, cereal, and soup. Watermelon is one of my faves as it contains fiber I can digest as well as water. Extra fiber may or may not be your friend, I had to switch back to 'white' carbs as those pass through me faster. The longer food stays in your intestines the more water is drawn out of it, if food passes quickly through you it passes out of you moister.
  21. I am 59 and was just diagnosed at the beginning of this year. I believe it is quite possible for an older woman to have POTS and that she may have had it for decades but it went undiagnosed and/or she has been treated for anxiety or hysteria in her past. I would certainly be insistent in giving a long and accurate history to a cardiologist or neurologist who understands POTS.
  22. I can't stand long either, I don't have a dishwasher so we may have to remodel the kitchen just for that (and that, so far, is the only good thing about POTS, lol). I do a lot of meals for the freezer. It is as easy for me to throw twice as many ribs into the instapot, multi-cooker or whatever you call it. I love this thing. I make ribs or wings with sauce in the pot and then, if you want, a few minutes under the broiler. I even learned how to make flan in it. This site has nice rated recipes or do a keyword search for 'recipes for the freezer' http://allrecipes.com/recipes/17880/everyday-cooking/make-ahead/freezer/ I will broil eight burgers instead of two and put the rest in a plastic bag in the fridge, they don't last long, my husband and son scarf them down in a day or two. I make a lot of reheatables. I know it costs more but I often buy the precut fresh veggies and melon at the market I don't like to depend on tv dinners or take-out though I do need all that extra salt, it's not fair to my family to overdose them on the salt as well as heavy calories that is in take-out foods. Instant carbs: Bake brown rice (EASY!) and freeze it flat on a cookie tray lined with parchment, then put it into a plastic bag to pour out what you need when you need it. You can do that with cooked grains and cooked pasta shapes too. My husband will eat anything on bread. I make flat bread pizzas, grilled cheese, paninis, etc. He thinks leftover stew on instant polenta is like restaurant food. I try to be creative, saucy leftovers on an easy carb is always a winner here. He also likes pancakes for dinner--I make them in the blender with greek yogurt or cottage cheese to increase their protein. I cook fruit in the microwave on the 'fresh' veggie button and we have that with the pancakes. And for fun, I went to the thrift store on a book day and got a ton of old appliance cookbooks--recipes meant for the food processor or blender or pressure cooker, I go through them and find new things to try, some of these books are so old I think my Mom had them in her kitchen, the added nostalgia is good for my head. And Hubs, so far, is enjoying the new recipes.
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