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WinterSown

Volunteer
  • Content Count

    563
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About WinterSown

  • Rank
    Advanced Member
  • Birthday 08/23/1957

Contact Methods

  • Website URL
    wintersown.org

Profile Information

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

Recent Profile Visitors

1,343 profile views
  1. WinterSown

    A typical dinner

    Doesn't that look yum! I love cooking for health and for the fun of it. I do it as a form of therapy--having to measure and lay out everything, then put it together and cook it. Fun and healthy and the family doesn't object. I love your beets--they look pretty with the greens in the same bowl. Yum! And I like your plates.
  2. They did nothing for you except bill you which is all they could do for you. Unless they knock you out you are going to have to ride out your symptoms. I have your 'bad' episodes dozens of times a day, I would celebrate having five in two months. Stop panicing over what you can handle on your own---you've already proved it to yourself--you're just working yourself up into a frenzy adding to your own stress. It is self feeding. Award yourself for getting through your bad attacks and use that skill set to get control back of your life, don't give in to self-crippling worry.
  3. WinterSown

    Newly diagnosed

    I have a cardiologist and an EP, they work in tandem. The doctors are giving you good advice. I am in the process of doing that very same thing--having my blood pressure slowly raised upwards--been working on it over a year. The purpose is so that when I do have a sudden drop in pressure the starting numbers are higher. That means the BP drop isn't going to drive the numbers so low I collapse and smash my face on the ground. Within the last year I warded off collapsing at the curb and falling into the street, I got dizzy but I didn't go down. If your blood pressure is dropping and makes you presyncopal or you are fainting then you may need to raise the higher numbers. Fainting is the gateway to broken bones and chipped teeth, you will recover from the faint in minutes, not so much the damage it does to you body if you land on something hard. There are many ways to even out what you are feeling so you can be comfortable and not collapse--adjusting drugs, what you eat and drink, and exercise are most of it, and with give and take it will be tweaked to you by your doctors. This is not a fast process but it works. Feel better soon.
  4. WinterSown

    Newly diagnosed

    I agree with @Pistol that you should pee more. I hope you mean two times a day more since starting to make an effort to drink more water. Can you keep a diary of your poops and pees for a week? It will give you a good idea of your own pattern. I have a BIL who goes once every three days, like his brothers and father and uncles.Hhe married my sister who can poop every time she pees (me too, and our mom and aunts). You cannot change your genetics. If your bowel movements are dry or hard and you are straining then use some glycerin to initially help but adjust your diet by increasing with easily--digestible fiber. A bowl of cornflakes helps me as much as a bowl of raisin bran--whatever works for you. Feel better soon!
  5. WinterSown

    Newly diagnosed

    I have been told if your pee is colored like apple juice or beer it is too dark, you need to drink more fluids. If it is lemonade or lighter you are okay.
  6. WinterSown

    Guilty

    Is someone laying a guilt trip down on you? Tell them to bug off! You had no control of the cause for dysautonomia if you even ever learn what that was. Management and medicine can help control or limit some of the symptoms but without the miracle of remission they are not going away. Anyone trying to make you feel responsible for this does not understand the syndrome and its many symptoms. Yeah, some people are thriving. But I just signed up with PeaPod to get my groceries delivered--I can't go to the supermarket because the sensory overload is a trigger for me, and I faint if I stand too long. Amazon takes care of the rest--no malls either, too loud, too busy, too bright. For occasions we choose quieter slower restaurants where the food is still good but the noise level is way less. I can't work outside the house anymore which triggered some depression, Lexapro is helping. Please be more kind to yourself. You are going through a tough time. Everyone here knows what you are feeling. Hugs.
  7. WinterSown

    DysautoCookia

    Anything that I think works! You can do stuffing like this too. Stovetop is wonderful but even for us it may be too salty, and Hubs doesn't need it. 😞 Mac and Cheese is like chicken soup. Everybody does it their own way and it's all good.
  8. WinterSown

    DysautoCookia

    I made a new one to me. I've made mac and cheese a zillion times but not in loaves. So, so easy. I wish I had known this when I was a newlywed! I made mac and cheese in a loaf pan, chilled it, flipped it out, cut even slices then wrapped them for the freezer. Defrost and heat in the microwave to eat as is or sear it in a hot pan on both sides. I boiled a pound of pasta and made a two-cup white sauce throwing in every little bit of cheese I had in the fridge or freezer (my Mom's way). Added buttered panko to the top and baked them until bubbly. Let it cool, then wrap and into the fridge overnight, then slice and serve or wrap as needed. A pound of pasta will make enough for two 8x4" loaf pans.
  9. WinterSown

    DysautoCookia

    It was! And so good. I am going to try it with apples this week.
  10. WinterSown

    Ongoing Mystery of Exercise

    I don't wear my socks to bed, I overheat and that makes me worse. I do wear compression socks in the winter outside--I'm about to walk the dogs so I will wear them tonight as they are still kneehighs and it's below 30 outside, but in the house or in a heated building I just melt into a sweatbomb and then I faint. Plain jane aspirins works as good as anything when my legs hurt but pleh. I've tried wearing compression socks at PT but I sweat like no tomorrow. If my legs get very painful there, often from some of the balance work I do, then I get on one of the bikes and ride like the wind without resistance--it drives the pain out.
  11. WinterSown

    ITCHY

    Sounds like paresthesia. I hate this, it drives me nuts every day. Sometimes I get only the itchies but it's usually pins and needles with itchies. I do find taking a walk or a shower are distracting--there may be something to change in temperature which signals an end to the nerve over-stimulation, either way. the paresthesia settles down.
  12. WinterSown

    Ongoing Mystery of Exercise

    So far so good. I don't usually take afternoon doses of my meds but this one I remember everyday. I got some extra chores done and slept well. As a side bonus, crossing fingers it is real, I seem to have better motiliy. That would be incredibly super awesome. I haven't taken it long enough to know if I need to adjust my dose up or down--usually my doctors tweak downwards. I did have bad leg pains last night, I don't know if it is related. I often have pain in my legs but this was a bit more. I like the extra energy but if it's causing the leg pains at night I need to stop.
  13. WinterSown

    I hate anxiety

    Without a comparison your numbers don't sound bad at all--some of us do that as a norm or want that for a goal. Initially I had the side to side whooshies and a sense like I was in the center or a 33rpm. My primary tested me with a Dix Hallpike Maneuver and in about three seconds I started freaking out and begging him to sit me back up. My first sessions for vestibular PT were in a dark room with a wonderful young doctor cradling my head and counting down as he re-positioned the crystals in my left ear. It took a few sessions but it's much better. I still see the same doctor now for all of my PT scripts from the doctors treating my other dysautonomia symptoms and he has combined them all into one program. I don't get vertigo from side to side movement anymore, I rarely get the spin. Yesterday, I was in traffic stopped waiting for a light to turn. The truck next to me started to slowly back up because he was well into the crosswalk--I thought I was going to hurl right there. I was still and he was moving backwards. I do have problems with length--the sidewalk extends or ripples up ahead. Doorknobs are weird sometimes too because of the reaching. And, I sometimes think I am seeing out of a fisheye camera lens; the view is slightly extended and a bit circular at the edges. I do have some balance and gait problems, I am still in PT and likely will be for some time more, but it's been a while since my shin had a lump the size of an egg from tripping into anything in my way. A couple of years ago we were vacationing and took a short cut from Cincinnati to Pittsburgh that took us through a corner of West Virginia. We drove on this little itty bitty mountain road that was more twisty than a roller coaster. We had to stop and I had to get out and pray to live. There was no place to turn except at a farm gate in front of beautiful cows. At about the same place returning, on the other side of the road, I got out and retched. As I was clutching the grass in front of me I grabbed a small piece of stone. I still have it in the junk drawer in the kitchen, my souvenir. Lesson learned, study the geography for road trips and take the roads you can handle, or plan to take frequent breaks to do more than go pee, you need to walk and improve your circulation. We like little parks or tiny museums--fun things to find along routes. Fresh air helps chase the whoozies away. And water. Plain water. sipped. slowly. My cardiologist, whom I've been seeing since my first bad tripping incident, always reminds me to try to find balance. He isn't talking physical balance only, but balancing how much I let symptoms effect my life. Sometimes you can't avoid triggers. For me, seeing things spin horizontally--like a carousel or a top, can trigger an attack. I'm okay with ferris wheels but put it on it's side and I'm whoozy doozie in a heartbeat. I do better in museums than amusement parks. Vertigo is effected by sensory overload--vibrations from heavy noisy trucks rolling down the street can bother me. Ugh. This is how the low-dose valium helps. It is a muscle relaxant and tones down the movement of your eyes and takes the edge off of the sensations at the same time. It works like a charm but has the caution of making you so relaxed you're off your sharp edge. I make a coffee or drink a diet cola--my fallbacks for energy because I can't do energy drinks which make me feel like a hyper chipmunk. I start with half a pill, I can take up to two pills. I need only one to knock me out. If I have to take the second half of a pill I am done and it's nap time. I can't always avoid triggers because life happens all around me but I do have some control with limitations. Vertigo is awful but it can be minimized and its effect on your life reduced.
  14. WinterSown

    Ongoing Mystery of Exercise

    I started Mestinin 3 days ago (20mg 3xdaily). I went to PT today and I'm not passed out, I even had energy to wash and fold laundry. I try to walk every night and during the day some exercises on the bed with my gel ring and big red ball. Steady exercise makes a big difference--just a little every day, no marathons needed especially for beginners who have to build up very slowly. I am satisfied with the benefits of some daily exercising, it is as good for your head as your body too, it's a big boost for both. And very important, be kind to yourself, be forgiving. Doing less running is still running and that's better than no running. Applause to you.
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