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WinterSown

Volunteer
  • Content Count

    504
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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

1,228 profile views
  1. WinterSown

    What are your vestibular symptoms?

    I go to PT about twice a week, I've been going for almost two years. It helps tremendously with balance and strength. If I have a Drop Attack I have the strength to support myself now. I was at my cardiologist this morning and we talked about it. I faint, remain conscious, and am still on my feet--my face not bruised and my teeth still in my head. I did joke that I would prefer being knocked out for the recovery aspect because the whooze is awful, but I'm not injured. This is a huge, huge win. Fainting is awful but because of PT I can do it conscious and on my feet.
  2. WinterSown

    What are your vestibular symptoms?

    I have vertigo. It's one of my worst symptoms and it sets off Drop Attacks--I faint without losing consciousness; I can collapse but I stay awake. I don't often get the spins but I feel like the world is moving at a different speed than me, sidewalks elongate and warp, turning corners can seem like going around a banked turn, door knobs extend beyond my grasp. My balance is poor, I feel like I'm going to fall over backwards when I walk up the slightest slope like a wheelchair ramp at the end of every curb. Walking up stairs is worrisome, especially if I am carrying packages--my balance is off and I feel like I'm going to fall backwards. I've added to my pillbox aspirins or ibuprofen so I take it regularly, twice a day. By adding them in with my prescriptions pills for morning and evening I have considerably less headaches and pain. I have had positives on every dix-hallpike they've done, last year the audiologist did a whole series including a vemp test to look for imperfections in the tunnels of my ears. I've looked at images, flashing or still, circles, moving things, had clicks pounding into my ear. Ugh. The VEMP test was horrible--it's like sonar mapping of your inner ear, it doesn't hurt but dang, super willies! I am on my third Vestibular PT script. The first sessions rearranged the crystals in my ear and began my balance and strength training. Each successive script has added more intense balance and core. I can hold myself up if I have an attack. My primary diagnosed the vertigo before I was diagnosed with dysautonomia. All the ear tests confirm that there is no physical deformity causing the vertigo and so it is attributed to dysautonomia. I have excellent hearing for 61 but my balance is not there. The primary prescribe 2mg diazapam (low-dose valium) for symptoms as needed, it does lower the sensations and tone down or remove the headaches. I bite the pills in half--for me one mg seems to do fine, a full pill and I need nappies. There is an OTC product called Bonine, often sold for sea-sickness, that may give you some temporary relief. Vertigo and imbalance are very treatable once you are tested and it is confirmed. A Dix-Hallpike test will rapidly confirm vertigo in the doctors office. It is non invasive and takes but a few minutes. For now, try to avoid areas that are going to give you a lot of sensory overload. Shop at slower hours or schedule at-home delivery to avoid stores which are meant to be flashy and get your attention. You need calm and quiet--stores and businesses don't do that until their very slowest hours. Feel better soon.
  3. WinterSown

    Feeling better after Gallbladder surgery.

    So nice to hear you are on the mend and have a plan to keep getting better. Apples are a great food for digestion. Keep healing fast!
  4. WinterSown

    Be Brave

    Thank you! Puffs on fingernails, rubs on imaginary lapels.
  5. WinterSown

    Be Brave

    balance, Balance, BALANCE! This is what my cardiologist is always stressing. In heart, mind, body and soul. tweak you water, your food, your meds, your spoons, your hours, your your, your everything. After putting so much effort into being balanced I fall over from exhaustion. #cantwin
  6. WinterSown

    Be Brave

    I push it up on my arm for typing, I have it pushed up now. Still feels comfy, the strap is very flexible. I am getting very used to it.
  7. WinterSown

    Be Brave

    I took a couple of pictures showing the closure, mint for size. Overall, the circumference of the band and strap is about 7.5". My wrist is 6 3/4". The strap has some give and is a tad stretchy so it will stay taught. Unless you are very skinny or a toddler this is not going to slip off your wrist like round bangles. I haven't taken it off since I put it on, I've showered, slept, washed dishes, etc and the bracelet holds up very well.
  8. WinterSown

    Symptom I don't hear about much

    I get similar pains from blood pooling. I do sleep in all sorts of positions that compress my blood vessels, it's the only way I can rest. I find walking to be very helpful in improving my circulation, I also exercise with balance boards which is superb for the circulation in my legs. When it's really bad I sleep with a heating pad and keep a bottle of aspirins on my end table.
  9. WinterSown

    Be Brave

    We must be brave to stand up to our symptoms and those who would prevent or discourage us from healing. Today I will bravely rake leaves. Tonight I will bravely sleep an exhausted sleep in my bed. #pleasenoblisters
  10. WinterSown

    Be Brave

    I have carpal tunnel and usually can't wear a bracelet but this is very comfy.
  11. WinterSown

    Be Brave

    and in fashion too, lol. I ordered an awareness bracelet from the DINET shop and wanted to show it off. I am not a jewelry person but I like this bracelet, especially that I can put it on by myself. I am brave!
  12. thank you. milk is good food.
  13. WinterSown

    So want to scream.

    Good for your Grandma, may she stay fit and happy for as long as she can! I hope we can all do that. I love walking--I put on my headphones and listen to my favorite tunes. I've saved a lot of old dance faves into playlists for walking or exercise--gotta have a beat to hit the street. My cardiologist is big on walking, he says "Don't like the weather? Get in the car, go to the mall, and walk there." Indoors is fine if the weather is harsh. Cooking can be quite the adventure. I cook up big batches of mirepoix, and I portion into freezer bags. Other stuff I make ahead too--I've made pre-marinated meat for the the freezer, all I have to do is defrost and broil or bake. To my surprise I finally can make a great london broil. Who knew! I bought some used cook-for-your-freezer books and learned new ways. I am 61, I wish I had learned this when I was 21. I wish this was something I had been taught in home-ec, I could have used this skill my whole life. Next, I want to look into some of these cooking 'projects' for a day of prep equaling a month of meals. We order too much take-out. Someday's I am so wiped I just can't do it but I'd rather pull something out of the freezer than get on the phone to Uber eats. I'm going to make a meat loaf today and let it sit until tomorrow when I can cut it nice and make wrapped slices for the freezer--these are a great fall back when you have zero energy. They defrost in the nuker while the bread is toasting; a meatloaf sandwich in less than five minutes is fast comfort food. Healthier than a bag of takeout. Someone ate the two leftover pancakes that were left from dinner last night. He's sitting in his chair with a syrupy grin, smiling and chuckling. I will have oatmeal instead.
  14. WinterSown

    So want to scream.

    I made pancakes with brown sugar for dinner. With everything, simple is best. I do love the old cookbooks--you can get them at thrift stores, yard sales and online. One of my faves is best recipes from the back of boxes and cans. You cannot go wrong with that. Basically, they are recipes for tired women to make when they come home from work. Simple, fast and yummy. Spirituality is very important. My management is very heart, mind, body and soul. Conquering the effects of dysautonomia is like rising on a platform--you must go up evenly or you lose balance. I do more things I enjoy and they are often different from my pre-dysautonomia life, I read and study--my primary smiles and says 'I do things.' and I appreciate that he notices. I go to PT twice a week and I exercise and walk, I practice portion control and don't eat food that will hurt me later, and I try to be mindful of the people near me and the world that surrounds me. I don't have a wax warmer but I do love a nice candle. (I do need to eat more fruits and veggies. But pleh.)
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