So want to scream.

[WinterSown]

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.)

[blizzard2014]

6 hours ago, WinterSown said:

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.)

Sometimes it all become too much to handle. I just found out that I might have possible pulmonary hypertension on top of my newly diseased gallbladder. It's like playing whack a mole with all these conditions and meds. Someone must have the two of us as voodoo dolls poking us with needles lol. You will push through this. You are one of the strongest posters in this support group. Hang in there. 

J

[Pistol]

@WinterSown - so sorry that you are worse again. I can relate: for the first years of my illness I thought that this is all temporary and every treatment or med was going to be the one that gets me back on track. But everytime the "placebo effect" wore off I found myself still sick - even worse. So I started to fight POTS - only to realize that this had made it worse. For many years I thought just like you: I am not letting this thing get me and I will win and I will NEVER accept my limitations. Then I had to stop working, became disabled and then depressed - because I realized this will never end, cannot be overcome and I lost. … But then one day - after one of many talks with my wonderful PCP who had tried for years to make me realize that this cannot be willed away - I found my acceptance. In stead of giving up I had to change my battle strategy. I was loosing so much valuable time in which I could be enjoying the simple things in life with my family by trying to stay on top of POTS. So I decided that I will do what I can when I can and no longer worry about what I "thought I should be able to accomplish". I started to plan my days so that I could do simple chores, exercise and enjoy family time - just without telling myself what I can do. Now I live every day doing what I feel like - and can - do, do not push myself and create a more peaceful me. Yes - I had to give up control over many things in life but I also re-created a life that works for me and my family DESPITE POTS. Can I do what I used to love - like gardening or hiking or working? NO WAY! But I can tend to my house plants, freeze my home grown produce, cook, do chores … take time for reading or exercising … enjoy my pets and - most importantly - I can still be a good mother and wife and friend and sister etc … I no longer look at what I lost - but by looking at what I can accomplish every day and by the things I still am good at I realize that my life is still very much worth living and enjoying and sharing!!!!!! --- Acceptance is not defeat - it is essential in healing. 

[StayAtHomeMom]

Accepting is hard. I can accept my new life most days. There are days where I still fight, but it is just pure stubbornness on my part. Life is easier when you accept your new norm. Your body and mind feel better

[WinterSown]

12 hours ago, blizzard2014 said:

Sometimes it all become too much to handle. I just found out that I might have possible pulmonary hypertension on top of my newly diseased gallbladder. It's like playing whack a mole with all these conditions and meds. Someone must have the two of us as voodoo dolls poking us with needles lol. You will push through this. You are one of the strongest posters in this support group. Hang in there. 

J

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 :-)

 

[StayAtHomeMom]

38 minutes ago, WinterSown said:

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 🙂

 

That sounds amazing. I have never been much for baking, but I may try to dig out my wax warmer and try to get my house to smell like you described. That sounds very spiritually uplifting. And today is a cold rainy day

[WinterSown]

13 hours ago, Pistol said:

@WinterSown - so sorry that you are worse again. I can relate: for the first years of my illness I thought that this is all temporary and every treatment or med was going to be the one that gets me back on track. But everytime the "placebo effect" wore off I found myself still sick - even worse. So I started to fight POTS - only to realize that this had made it worse. For many years I thought just like you: I am not letting this thing get me and I will win and I will NEVER accept my limitations. Then I had to stop working, became disabled and then depressed - because I realized this will never end, cannot be overcome and I lost. … But then one day - after one of many talks with my wonderful PCP who had tried for years to make me realize that this cannot be willed away - I found my acceptance. In stead of giving up I had to change my battle strategy. I was loosing so much valuable time in which I could be enjoying the simple things in life with my family by trying to stay on top of POTS. So I decided that I will do what I can when I can and no longer worry about what I "thought I should be able to accomplish". I started to plan my days so that I could do simple chores, exercise and enjoy family time - just without telling myself what I can do. Now I live every day doing what I feel like - and can - do, do not push myself and create a more peaceful me. Yes - I had to give up control over many things in life but I also re-created a life that works for me and my family DESPITE POTS. Can I do what I used to love - like gardening or hiking or working? NO WAY! But I can tend to my house plants, freeze my home grown produce, cook, do chores … take time for reading or exercising … enjoy my pets and - most importantly - I can still be a good mother and wife and friend and sister etc … I no longer look at what I lost - but by looking at what I can accomplish every day and by the things I still am good at I realize that my life is still very much worth living and enjoying and sharing!!!!!! --- Acceptance is not defeat - it is essential in healing. 

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. 

[WinterSown]

8 hours ago, StayAtHomeMom said:

That sounds amazing. I have never been much for baking, but I may try to dig out my wax warmer and try to get my house to smell like you described. That sounds very spiritually uplifting. And today is a cold rainy day

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.)

[StayAtHomeMom]

3 hours ago, WinterSown said:

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.)

My hubby has been collecting old Cajun recipes and cookbooks. He wants to start a food truck. Me personally, food is what you eat to survive. I prefer good fiction books, and video games personally. But whatever strikes your fancy and makes you happy is the most important thing. This illness can be difficult and we must enjoy what we can

[Pistol]

@WinterSown - I so share the love for cooking and experimenting with new recipes! Although I function best in the am and my abilities to be active dwindle the later the day goes on I enjoy cooking for my family. That is why I often prep everything I need in the am and then just throw it together before dinner. Granted - some days I am too fatigued by dinner time to eat but I still had fun cooking! --- You mention that you feel better after a good walk - that reminds me of my mother. My specialist believes she too has POTS but in her case no one knew what that even was ( she is 87 years old ). She had fainting, surges and fluctuating BP's including severe hypertension starting in her 40's and had to stop working in her 50's due to this ( sounds like I got it from her ). She is an avid walker - to this day she says that a good walk in fresh air cures her symptoms! Today she lives in a senior complex and is one of the most healthy and active person there and I believe that is due to her walking all of her life. So - keep on trekking!!!!!

[WinterSown]

3 hours ago, Pistol said:

@WinterSown - I so share the love for cooking and experimenting with new recipes! Although I function best in the am and my abilities to be active dwindle the later the day goes on I enjoy cooking for my family. That is why I often prep everything I need in the am and then just throw it together before dinner. Granted - some days I am too fatigued by dinner time to eat but I still had fun cooking! --- You mention that you feel better after a good walk - that reminds me of my mother. My specialist believes she too has POTS but in her case no one knew what that even was ( she is 87 years old ). She had fainting, surges and fluctuating BP's including severe hypertension starting in her 40's and had to stop working in her 50's due to this ( sounds like I got it from her ). She is an avid walker - to this day she says that a good walk in fresh air cures her symptoms! Today she lives in a senior complex and is one of the most healthy and active person there and I believe that is due to her walking all of her life. So - keep on trekking!!!!!

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.