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About WinterSown

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    Advanced Member
  • Birthday 08/23/1957

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    Long Island
  • Interests
    Winter Sowing, metadata, learning new things everyday.

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  1. WinterSown

    Welcome new members

    welcome to everyone!
  2. WinterSown

    I made a cake.

    #hippiegrandma Pull up a chair, grab a mug of coffee and have a cookie--I am sorry to hear about your diagnosis but you're in a good place here--people can help you with their experiences so you can get through your own. It's a very good support group.
  3. WinterSown

    I made a cake.

    Yummm, banana bread. All my cookies are gone, eaten to the very last crumb. MIL called, she loved them. I agree with you, it's like learning to cook again. A lot of these old recipes seem like ones I learned in Home Economics back in the early 1970s. How would you define it? Maybe call it Retro Cooking. Hubs requested vanilla dunkers for the next batch, I guess this one's a make again.
  4. WinterSown

    I made a cake.

    My adventures in new recipes from old cookbooks continues and I made Basic Drop Cookies last night--easy tweakable recipe, super easy. I used a recipe from King Arthur's 200th Anniversary cookbook, the online version has about twice the chips and nuts than the cookbook recipe. I could take these to a cookie swap or bake sale and hold my head up high. These are more cakey than chewy--like a cross between a cookie and a muffin top--they are superb dunkers. YUM. I made them with the mixer and after chilling measured them out with the ice cream scoop, got 18. Yesterday was my MILs 91st birthday, she got six of them in a box. I'm too generous.
  5. WinterSown

    how do you deal with a good spell?

    I hear you! Every little thing that is an energy saver adds up. Slight changes can make big differences. Over the past few months I've been making some changes in how I do things. I prep and cook a LOT more for my freezer, last night we had wings that I put in marinade and froze in a baggie; I just defrosted them in the nuker and baked them on a foil lined pan--baked the wings and tossed the foil afterwards (I don't have a dishwasher.) I make mini meatloaves in muffin pans and pop them out for singles--Hubs calls them Meat Muffins (lol), they freeze beautifully and defrost and heat so fast for a sandwich. I putter around in the garden restoring it because I did nothing except mow for three years. Some of the old tomato beds are going to be converted to habitat--more shrubs and reseeding wildflowers. Inside the house I've been de-cluttering by donating or chucking things I will never need again. Now I don't have to dust them again or store them or care for them in any way anymore. I went outside for a look, my wildflower seeds are sprouting.
  6. WinterSown

    Symptoms of over exertion

    My thigh bones throb. Nothing helps except time. And a lot of soaking with epsom salts. I lay down on the bed and it feels like gravity is pressing me into the mattress. I know that getting up and walking around will help my circulation but I am stuck on that bed until I sleep it off. I hack a lot too now--I think I'm just throwing off toxins. Hack hack hack. I think spring allergies are whacking me too. Plain jane aspirins seem to help better than anything else for the pain.
  7. We knew we had a vacation week coming up in the fall and we hadn't nailed down a city yet. I saw this event coming up and asked if he wanted to go and he said yes instantly. Hubs loves anything historical and military and I love staying in river cities. I booked the trip twenty minutes later including overnight stopovers in Corning for the museums. #doitright I have blood pooling in my hips if I sit too long so I need to get up and do more than take a pee break on road trips. I have to get out and walk around for a while to get my circulation and brain oxygen back to comfort levels. We use a nifty map site that has pushpins to some of the more unusual stops along the roads. We visit a lot of these. The benefit of museums and parks that are off the beaten path is that they are just as fascinating but are quieter, smaller, and usually there is no wait for the bathroom. Roadside America.
  8. #whoami There are regional events in October. Hubs and I attended one in Niagara last fall, we met with others for a lovely dinner and watched the falls turn turquoise for Dysautonomia Awareness. I think they will be illuminated again this year, I have not heard otherwise. There are other events in Canada or right across the border in the states. We drove up from Long Island but other families had traveled as far from other states--I know some drove from other states and provinces. Worth the trip because Niagara does not disappoint.
  9. @RecipeForDisaster Any day you are not on the floor is a very good day. Doctors see us in fifteen minute segments which you hope they remember as well as you do. Were you better than the visit before? If so, the doctor was very sincere in saying 'glad you're doing better'. Be happy s/he remembered or maybe they didn't and only have their chart notes to go on . You appeared better than your previous visit. #celebrate #smallwins
  10. I hope you feel better soon--heart, mind, body and soul.
  11. It depends on the individual--that's what it's all about. You remaining you. And not letting dysautonomia or the negative social side-effect, like your life careening out of control, change who you are as a person. It's been almost fifteen months since my diagnosis but two weeks ago my MIL was questioning which doctors gave me that diagnosis!!! Obviously, that was about her and not me. Oftentimes, no--a lot more than often; it's pretty much every single time someone bugs you, questions you, snoots at you--they are trying to make you think you are less than you say you are. It is all about them. Take a moment and consider the emotional weakness of person who has to bolster themselves by attacking someone they know has a confirmed diagnosis; they know you are ill but you are an easy mark to them until you stop them. I would not let my MIL get the upperhand. I had my facts and I was able to tell her she was questioning two cardiologists (she sees one of their partners) and several other of her/my doctors including our primary who I started seeing on her recommendation. In other words, I whipped out everyone's credentials and beat her over her head with them--well, verbally of course, and I was polite because she's 90 (I am 60 and she's been POed at me for nearly 40 of them. hehehe). She didn't get her jollies--she looked so sad too 😞 You have paid a ton of money for your medical documentation, whip it out in conversation when you need it. As situation warrants, you can be more or less polite when you tell someone that your personal life is your own--they usually get the hint, if not then ignore them.
  12. 'Glad you're doing better.' means just that. It doesn't mean 'Hallelujah! You're cured!!!' I saw two different cardiologists yesterday and heard the same from both of them and I GLOWED when they said it because it means they noticed I'm trying to get better. Doctors like when they physically see you are following their advice or by some miracle (other than them) you are improved. It doesn't mean you're out the door and gone from them forever. It doesn't mean that you won't feel like crap ever again and it doesn't mean you are cured. Usually it means they see you're strong enough and can begin another stage of care to get your life back on track again.
  13. There are some online POTS forums where it seems their tone is more about who has the most symptoms, the biggest pillbox and the worst non-understanding friends. These places are about keeping you down in the dregs with the worst of them. Avoid these forums because they're not about getting better. This forum here, DINET's forum, is quite the opposite, we're all about encouraging people to get better; meds, exercise, the right foods and personal disciplines can bring about an amazing change. If you are worried friends will treat you negatively because you are making a winning effort to get better then you need new friends. Dump anyone who disses you for not staying down and in despair, physically and mentally. You must rise above their words.
  14. WinterSown

    Is this a lifetime illness?

    Vertigo is one of my primary symptoms, it comes and goes at different times and strength. I pop one mg of diazepam as needed, currently several times a day but it helps. I have had Vestibular treatment to 'rearrange the rocks in my head' as my DPT loves to say, and I have been in physical therapy for almost two years steady to help me with balance and gait. I am much better, I don't fall over and trip as often and I am, overall, much stronger. Chronic vertigo is a life changer but it doesn't have to change everything--you just learn to do things a bit differently. Sensory overload is a huge trigger for me so I've learned to shop at stores when they have their slowest hours--info I can get by googling the store's name and address. I also wear wireless headphones with pads--not earbuds--which do a lot to cut down on external noise, sunglasses I often wear in large stores--their high ceilings are very glaring and bright. We will be travelling for vacation in a few weeks. I can't fly but we instead take wonderful driving trips which I map out ahead with lots of stops to take a break, walk and get my circulation going well again. Vertigo made good things different, it didn't make them go away. It was not easy at first but I am getting better at having a more active and full life. You will get it under control and get back a lot of what you used to do, it will happen.
  15. WinterSown

    Doctor Groups with Electronic Records

    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.