WinterSown

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

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!

thank you. milk is good food.

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.

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.)

You've touched on so much I am dealing with--we all are dealing with it. My symptoms are always swinging which makes management tough yet I am learning to deal. Timing is everything--what time to shop, prep meals, do the housekeeping and laundry. I hate to micromanage my spoons but some days it's a must. I'm learning it's okay to stop a chore midway and go lay down for a bit then get back up and finish it--I would do chores straight through and be wiped out, but taking a break is better as I do get the chore finished without needing to sleep for six hours afterwards. Learning to take breaks is hard--I used to be a workaholic. I rarely know the day or date unless I look at the phone, it's not from memory loss it's from regularly-scheduled-life loss. Taking care of the nagNagNAG list provides a temporary purpose I can always fall back on. I can't garden anymore which makes me very sad. This week we have to get someone to trim the trees and do the fall clean-up, I have had to admit I can't do it anymore--I take lexapro to help with the depression but I am still not content with the loss of my garden. It looks beautiful just more wild and very overgrown--it needs serious whacking back and clearing out--trees, bushes, edges, gutters, everything. $igh. I used to be able to do it all. Grrrr. I do still enjoy walking, especially at gardens or preserves on their nature trails. Hubs and I stick to trails under two miles and rated Easy to Moderate. They're about an hour walk or so when they are that short. Watch out for anything 'Moderate' because sometimes it's a bit more challenging than suggested. However, I do find the up and down roots-for-steps walks to be very invigorating and superb for my circulation--I could go all day as long as my legs keep feeling better and better from the perfusion; my sinuses clear and I can breathe deep--I love the scent of damp forest, it is the scent of life. And a great benefit, I sleep well that night and am a super pooper in the morning (yay!) because exercise helps motility. It's getting darker, night has fallen, and the day's storm has cleared. I will soon trek out with Emily, come back and switch dogs and trek out with Lucy. Walking is vital for my head as much as my bod. When you walk late at night no one can hear you except your dog. My dogs know all my dysautonomic rants and raves, they know the name of every doctor I despise and the names of every one I love. The know it all. This past week I went out with my sister for lunch--where do you want to go I asked her, 'a pub'. So we went to a bar and had a beer and appetizers for lunch. Next month I want to go to the paint bar and paint a sunflower while I drink pinot. Vitus tonightus.

I'm sorry to hear about the PAH, it can be helped with oxygen therapy and medicines; I hope you find relief, the right medicine combos right away, and your symptoms lessen soon. I've passed gallstones before--horrible experience, youch! I did not have my gallbladder removed but should it happen again then out it goes. Gallbladders are painfully unforgiving things, eat wrong and you will be punished with pain. As long as I don't overdo it on fats I'm okay, crossing fingers. Again, I hope you find relief soon. Everyday is a new day. The Blondies are gone. Gone. I had two 😞 Dang, they were good. I did not eat the whole pan myself--could have. Hubs and son basically cleaned it out themselves in a few short hours. Part of my neurotherapy is making things with my hands from start to finish and also reading non-fiction. This translated into a wonderful new hobby of collecting old cookbooks and making recipes from them. Cookbooks are non fiction and it's cooking from scratch with me measuring and chopping while I stand--that's the real the hard part--and most important, Hubs has no complaints, lol. I have no sleep cycle and made all-brown-sugar* Blondies at 1am from a Meta Given recipe. My house smells wonderful on this very cold and chilly day. So, in that, I am living well. Warm cookies in the middle of the night--ahhhh. I do get the concept of the Voodoo doll thing--gosh, sometimes it feels like I'm being speared with a knitting needle. But it goes away in half a moment and leaves me with the sensation of being quite alive. Yippee. Grateful it's over, lol. I'm grateful for one milligram of valium when I need it too. My body is the tivo of symptoms--anything, anytime, anywhere. Whatevs. In some ways I do feel like I am settling in, not ready yet to say the "A" word. I do avoid triggers and I'm working on reducing the stress in my life by currently taking care of nagging tasks, yesterday afternoon I painted my front porch steps. It took less then fifteen minutes with a can of paint and rollers I bought last year but never used. I found another can of paint from the year before in the garage, it too unopened, and think I may have enough to do the back deck and the foundation. (rolls eyes to self, keep thinking it and it may come true, lol) and all of this with nothing I have to buy because I already bought it a year or two ago. nag Nag NAG. The steps look nice this morning. I see a multi-win there. First, I found the paint and rollers. Second, I could paint it without fainting or getting so whacked I had to lay down three steps in. Third, I didn't lose my balance and fall over. I went to the dollar store and bought some foil sparkly ghosts. They will look good against the newly painted deck--I did barn red. I still have to replace the carpet but that's nailed down with the staple gun and done in minutes. I need a pumpkin, a chrysanthemum and I'm done. I give out rice krispie treats each Halloween, my steps should look nice. *Side story on the brown sugar. Last year I was trying different grains and sugars for eating healthy and I wanted a box of brown sugar called Dark Brown Molasses Sugar. I seemed to have made a mistake when ordering and was shipped one case instead of one box. But I like it, it keeps for a while, so I didn't return it for an exchange. I still have six boxes in the cupboard. Another case of Dark Brown Molasses Sugar arrived yesterday because not only did I order one case but I am on six month delivery cycle too. This year for the holidays, every cookie or cake or bean or brisket will have some of this molasses brown sugar in it. Brain fog can be delicious :-)

I saw my neuro yesterday. I leveled up over the summer, all the symptoms got a little wonkier, a little worse. But my ability to handle them is improving at an accelerated rate as well; I am getting used to the sudden out-of-nowhere onset of symptoms. I got worse but I seem so much better...the dysautonomic's dilemma. We talked about acceptance, we talked about avoiding triggers. When we got to talking about living the best life I can live I wanted to scream. I know it, we all know it, no cure at this time but remission is possible (when, please?). So best to enjoy your life, have fun , do things. I wanted to instead hear from her that it's a flare and it's going to go away but I didn't hear that. Instead I heard live your life the best you can. I left with another set PT scripts--balance and parasthesia still vex me. I went to PT this afternoon and I worked out a lot of frustration, sweated it out. I love PT, it is one thing that always improves my body and my state of mind. I'll walk later tonight after the town quiets and there's little traffic--sensory overload is so much less. Walking is good for my head and bod too, I used to hardly make it to the corner without exhaustion now I can go much further. What shall I do first for joyousness? I think I will make a pan of Blondies and eat them all myself, sorry Hubs, hehehe. With coffee--a ginornous pot of coffee. I'll feel fine in no time, so there! (I may also make a second batch and freeze them--holidays are coming so one less thing to do then--fun.)

I precook a lot of my ingredients and keep them in the freezer, like mirepoix, or chopped and cooked onions or mushrooms. I bought some used cookbooks online about cooking for the freezer and they have been a great benefit. I per-season food like london broil, chops, or wings and put in a freezer bag. When I need a meat I just take one out and defrost then cook. It's a bit of a change for me as I have always enjoyed making dinner but I can't stand long enough to chop a carrot, so having some extras already prepped in the freezer has been a big help.

There's probably twice as many unknowns as are on that list, the list will no doubt lengthen over the coming years. My doctors and I have made the decision to not pursue cause but instead treat the symptoms. Like many people in their sixties I have had a lifetime of virus, disease, trauma, whatever. I just don't need so many tests. Reducing the symptoms and/or their effect on my life is the focus. Be well.

I get an attack when I stop moving or change position. So like, a zillion a day.

Without knowing what the tests were I'd still celebrate getting a good cardiology report and good reports from the other doctors showing no defect. There are multiple forms of dysautonomia, POTS is only one of them. Obviously only a doctor can diagnose but I'd ask your doctor to check your daughter for vertigo using the Dix Hallpike Maneuver which can be done in the office, is non invasive, and will tell in moments if she has vertigo. I would also consider discussing her visiting an ENT or Audiologist to rule out any physical defect within her ear which can cause many disturbing changes to how you process with your senses. I would not hesitate to ask the doctor to consider sensory overload as a trigger for your daughter's symptoms. I hope she feels better soon, sensory overload is one of my biggest triggers. I've learned to shop at slowest hours, we dine in the quiet restaurants. go to the tiny museums and rural parks on vacations, I walk and exercise mostly at night, etc. It all helps. Management is very possible once you realize your triggers.

I'm 61. Dysautonomia is complicated enough but as we get older the symptoms of normal aging can mirror those of dysautonomia. A recent neck doppler showed I have cervical radiculopathy which can radiate pain into your limbs. Physical therapy, aspirins, muscle relaxants and walking have been very helpful in giving me better range of motion and longer endurance. Fibro goes hand in hand with dysautonomia, I think especially more so as you age because there is age-related wear and tear on the body to add to your woes. I've added naprosin and to my pill boxes because when I take them regularly I control the pain better. Be well.

I would like to thank Hubs who lately has been taking too many days off from work to sit with me in my appointments and tell doctors what he's seeing. He's not there to back me up, he's there to provide what I forget 😞 I've become very sound sensitive so he's got his tv down to extra low; he watches sports like he's at the stadium and can't jump up and hoot and holler when his favorite sports team scores--it sets off my symptoms. He gave up his favorite restaurants for more quiet ones. He's ready to retire but may have to keep working a few more years for the insurance. That's a big sacrifice when he worked so hard for that retirement. Today is his birthday, I just realized I forgot to tell him Happy Birthday this morning before he left, sigh, he didn't say anything because he knew I forgot. I've been with this guy for forty years and he still loves me. Thank you Hubs for being there for me so often.

Caregivers are as important a role in our lives as our doctors. They help us throughout our dysautonomic day, week, life. They help us with daily living. Along the way there is a trade-off. Caregivers slowly change how they live to accommodate our needs. What they do and the free time they have slowly ebbs away as they become more involved in our care. October Dysautonomia Awareness always will find praise for doctors and patients; I think it should also highlight the wonderful men and women, our caregivers, who help us keep going forwards. In honor of this special month I would like to invite you all to share a story or kind word about your caregiver(s). Caregiving 101~ On being a caregiver. Caregiving ~ Recognizing Burnout Gifts for Caregivers ~ Wonderful list of ideas. One of the best ways to participate in Dysautonomia Awareness is to let your caretaker know that you are aware of their sacrifices to care for you and that you are thankful.

Your stress if the product of a pervasive misconception that there is a win or fail to the TTT. It's not that type of test. It's not the POTS machine. All it does is measure levels of syncope and orthostatic intolerance. The doctor and attendants will observe you during the test, they will also consider your medical history. Based on all that you can get an accurate diagnosis. Afterwards it will be trial and error for a bit until your meds and management are adjusted to your symptoms and you have some relief from them, but it does happen. Good luck and don't let stress eat you up.

This is a good time of year to go through the coat closet. A lot of dry cleaners accept donations of coats which they freely dry clean for charities to distribute to those in need.

Yes it has. I've been slowly purging the things I no longer use, I donate anything that I think I would buy in a thrift shop and trash the rest. I've recently reorganized my books and kept the ones I use or love, some have been donated though some did go up in the attic until I know what to do with them. Now that the weather is cooler I can get back up into the attic. I seriously don't need half a dozen sets of mismatched old threadworn sheets--some I've had since I was married decades back. I'd put them away thinking I'd tear them for rags in the garden but that never happened. My fall project is to 'reclaim' my clothes closet--it has to be emptied and half of it won't go back. Sometimes, when I am cleaning the house and am just so foggy it seems overwhelming. I put on the timer on the stove for fifteen or twenty minutes and say 'that's the limit'. I find I can do more with the timer than without. It seems to keep me more focused.

I just got back from PT. I took two and half weeks off as I am in a bad flare. Despite that I was able to do my whole routine without getting faint or zoning out. I powered on through and just forced myself to stay balanced and focused. A lady came up to me before she left and told me she couldn't believe how well I could stand on a tilt board and throw and catch a basketball. I didn't want to tell her it took 18 months before I could do it well :-) I'll take the wins when I can get them. Thank you PT lady, you made me happy I went today.

@edriscoll We are all in this together! I just found a good classroom video on the Autonomic Nervous System. I like this a lot.

I am not ready for acceptance, I wrote about it in the last newsletter. One of the best things that came from doing advocacy is that it has had a wonderful effect on my management and care. My doctors know I understand the condition and how I stress the necessity to establish unique and individual management programs, especially as we age. We are all unique and need care tailored to us, not some one-size fits all treatment. Let your doctors know what you are learning and doing, what info you are sharing to help others. Doctors are usually impressed with patient advocacy and it will improve how they treat you all around. Never give up, never surrender.

What are you doing to increase awareness? I am doing a fundraiser on my FB page and I will also be sharing info links about symptoms, management and diagnosis every day for October. Education is vital to ourselves as well as our friends, families, caregivers and especially our doctors. If you can get one doctor or nurse to understand the symptoms or even that we are to be believed you will have made a positive contribution.

The TTT is not the POTS machine, all it does is measure syncope and orthostatic intolerance. Your test results, observations during the test and your medical history go into making a diagnosis. Sounds like you do have dysautonomia symptoms--I have OI and NCS. POTS is not the only dysautonomia and I am sorry that you are going through these symptoms. Take your meds, increase your salt and water, eat foods rich in electrolytes and slowly increase your stamina with incremental exercise--if you think you are doing too much then do less until you have enough flexibility and strength to do more. Be a squeaky wheel, if your meds or management need adjusting your doctors won't know unless you tell them. You will go through trial and error on meds and management until you get the right combo for your unique condition. How you feel your symptoms is entirely unique to you so getting on track can take some time to stabilize your symptoms, you will learn to manage your life.