Becia

I read an article that while we're taking the fiber out, our body still needs some sort of fiber, as it helps keep the blood sugar regulated? Something like that... I'll have to hunt it down. I could live off of fruit and some veggies. I love salads, but they don't love me, lol. I do eat chicken, and this last week, I made some italian grilled pork chops (I love to cook and experiment in the kitchen, but most of what I cook, I can't eat lately). I don't get a whole ton of protein in my diet because I have issues eating it lately, but fruit and veggies, we're good.

Not a UK person, but thanks for the information about compression stockings I can't remember the brand I have, they are knee high, but hopefully this week I'm progressing to waist high and possibly a little bit stronger, as my feet still pool wearing the 20-30mg.

Howdy Marina! Welcome to the club here. Looks like you've been put through quite the ringer... hope you find help and support here. I know I have, this board is awesome Becia

Normally when my potassium is too low my legs cramp more, also from when sitting in my wheelchair and using them to pull myself around, I noticed they are a bit sore.

You know you have pots when... You no longer cook for enjoyment, you cook for living. For me, if it tastes bad, I'm sure it's good for me, because I hate HATE salty stuff, it all tastes horrible to me, so I literally choke food down now when I do eat. All of my cooking experiments have been failed lately, but man, I can still bake like crazy. Your phone has alarm settings titled "take midodrine", "take your midodrine now...", and "seriously, get off your duff and take your pills". Yes, I have alarms set for them, but I usually don't need them now, I'm pretty much on a schedule and I know when it's time to dose by feelings. And my favorite...You realize your compression stockings negate the need to shave your legs. Yes, this just happened for me. I was about to take a shower, slather some veet on, and shave my legs, but then I double checked my outfit for church tomorrow, and realized, the knee high stockings I like to use are perfect for the capris I'm wearing. Score! Now they will eventually get shaved, but right now I can save my energy for something else.

Okay, found some Rudis, and I also found some Udi's at Kroger here in town... I got a loaf of the cinnamon raisin bread in the Rudis brand, since normally for me, bread is a breakfast food, will try it tonight with some homemade honey cinnamon butter. What brand of baking mix to you all prefer to use that is gluten free? I've seen some sandwich bread mix by Glutino (I love their lemon cookies), and a couple of bobs red mill to, but was curious if anyone thought of any other brand being good?

On days I drink a lot, I try to make sure I'm getting a good amount of electrolyte rich drinks in me, although my doctor at Cleveland clinic was adamant that I drink that much in just pure, unadulterated water. I finally told her we are gonna have to compromise because just that much fluid makes me sick period, so she finally accepted that I alternate water with Gatorade and my electrolyte mix (which is lemon juice, lime juice, water, salt, and a little bit of sugar to take the edge off, or else it's really strong). I also try to drink some orange juice every day, or every other day depending on my stomach. I need to get back to checking my bp at home a bit better. Just replaced the batteries in my machine, and checked it because I flat out feel like bleh, and it was 160/101 with a hr of 108. No wonder I have a bad headache right now.

I went from passing out while laying down, to being able to sit up for a couple hours with my feet down. It hasn't been an easy 9 months, and I still have quite a ways to go. I would rather use my chair, than dislocate my hip again, or worse, break something,especially while out of my safe zones. It ensures I can get to my desk and be worthwhile when I'm studying for school, it ensures that I can make to my appointments and focus on the problem at had for whatever appointment it may be (therapist, pots visit, etc). It's gotten me out of my house, and that honestly has been one of the biggest pluses of the entire thing. No one wants to step outside their door and feel nothing but panic because their body is so unpredictable. And I would worry about others around me, what if I hurt them. I don't have that fear now. I stand as I can, I walk as I can, sometimes that's more, sometimes that's less.

I have two, and I use them everyday. I typically don't use the legs on them, so I can utilize my legs to move and help work them a bit, but when out in public, I will hold my feet up under me and use my arms. I look at using them as working out sometimes, because I can alternate back and forth. When in the house lately, I do try to walk a bit, but always have my chair nearby, or somewhere to sit. I love to bake and cook, so when in the kitchen, since it's hard to get around there, I station chairs in different place, so I can take a few steps and sit if need be, be at the right height to chop veggies, etc. I use it to go longer distances I don't feel comfortable doing as well, sometimes that can be just around the corner of my door to the couch, or to the garage. I have another that I use in public, it's more comfortable for sitting longer, and in public is always my fear of passing out, I'm safe in that chair. I do take a few steps to get onto the stage at church to play drums, and a few steps back, but for the most part, I have it nearby just in case. I fought the chair tooth and nail when my doctor and my friends decided I needed it, because I had banged myself up pretty good with falls, but in the end, they have been worth it. I'm afraid of being too reliant on it, hence why I'm trying to walk more in safe areas, but being out, it's handy. I hadn't had to purchase them, one was an old one my grandma had, and the other we are currently borrowing from a friend, but I also have a script from my doctors to get another one if need be. If I could get one like my older one, which fits in doorways, I would get a new one, but they are all much wider now, and having the one that can go in doorways has been very helpful.

I have a very hard time drinking what the doctors want me to drink, which is "just 2-1/2 liters". Yeah, just that much... I get so full on fluids, that I end up not wanting food, so getting the right nutrition in me has been a load of fun. As for feeling better if I drink less, I know nausea wise, I do feel better, symptom wise I'm still about the same either way I go. I do try to make sure I have something with me at all time, but trying to force myself to drink 44 ounces of water before I get out of bed, I no longer force myself, because then I'm just sick the rest of the day. I can't even drink the 16 ounces they say to drink before getting up. As it is, all this fluids just goes right through me, and I can't see how drinking so much is supposed to be helpful if I can't retain any of it. Somedays I can drink more, some days I drink less. Today is probably a more day, as I've already drank probably over 50 ounces? Now, I've only been able to eat one Belvita soft biscuit (I'm kinda addicted to these), and a chicken Cesar wrap from Wendy's, but I've drank a lot because I got a lemonade at Wendy's, as well as drank some water when I got up, and some homemade electrolyte drink after I worked out this morning.

I had wondered about the nutribullet, I had almost bought one a few months ago I hopes that I could create a few things that would be easier for me to tolerate, but then heard how they broke easily. How have y'all's handled everything? With me having issues with solid food lately, I like smoothies and such, but haven't quite gotten to the vegetable state with them, lol. My favorite is a pineapple mango and strawberry smoothie made with orange juice, a little milk, some honey, and yogurt. It makes a double, so I freeze what is extra and eat it like sorbet later.

I have a coupon for Rudi's but I can't find it.

I'm hoping I can get this approved after my next cardio appointment next week, either at home with a port, or at some sort of infusion center (we really don't have one around, so I'm afraid its going to be "go to the er twice a week"). If they could do two liters once a week, I think I would be set, they help so so SO much than me trying to drink everything. I drink 16 oz of whatever, 10 minutes later, I'm peeing it all out, I keep thinking "Whats the point?", and when I'm on IV's, like when in the hopsital, my cells and my body absorb it so much differently, and I feel 10 times better.

I love Bob is Dysautonomia! Such a good blog. I love to write too, and have been fiddling with a few stories as of late to pass the time when I'm needing to stop and recuperate.

I'm on .2 of florinef, and I feel my heart everyday, all day. Before my POTS diagnosis, I had two ablations for insane PVCs, and that was one of the things I kept asking my doctors "is it normal to feel your heart so much? I feel ever PVC, every run of tachy, everything." My EP who did the ablations just said I was one of those abnormal people who just feels everything. Sometimes I keep thinking if they could just do something about me feeling everything my heart does, maybe I would be a bit better off, because it really bothers me a lot.

We have a screened in back porch, as well as a uncovered porch, that in take full advantage of when the weather is nice... Lately just too cool for me to handle though. It's a change of scenery, just wish I was able to go hike in this nice weather before it gets too hot.

I weight the pros and cons of going out so much, that sometimes I throw caution to the wind and just go do it. I know I'm gonna pay for it, but like you said Cleo, it's so uplifting to our minds. I have been riding along with my friend Lori when she goes and picks up her lunch (she works outside the home, so often times to escape, she goes out for lunch) just to see something other than the same four walls, no matter where I am in the house. Lately though, I've been taken to staying down in the basement where the home gym is, after my workout for the day, just laying on the couches for a few hours. They are so blooming comfy, it's just wrong, lol. I always end up falling asleep, but lately the weather has been nice, so I've been watching the birds outside the wall of windows and the woods. Keep telling myself someday I'm gonna be back outside with those birds, lol... I'm so worn from this last weekend, that I'm taking the week off from school. I did a quiz Sunday morning since I got up so early, so I'm currently ahead, and tired transcription leads to bad grades with me, lol. It's hard to take it easy knowing I have work that could be done, but my body says it's needed, so I'm trying to.

I'm pretty introverted too, unless its an activity I like/love, like my music, my sign language, bike riding, hiking. I think with me the problems I'm having dealing with not being out in the public now, is the fact I used to be able to drive, and just pick up and go if I wanted, and right now, that ability has been taken away from me (my keys were taken in July after my diagnosis, and no clue when I might be cleared since I do pass out very easy sometimes). Now I have to live by someone elses schedule, which for the most part is okay, but there are times I am literally in tears, because I need a different surrounding other than my home. Yeah, I'm going to different parts of the house, am able to go downstairs to the basement and hang out for a bit, or sit out on the porch (screened in back porch) for a change of scenery from the living room or my bedroom, but I get so sick of it. I used to walk the local cemetary and look at the history and the artwork displayed in the statues... I long for those walks again. I see a new neurologist on the 21st, and my GP wants him to clear me to drive. Part of me thinks he'll be like "yeah, go ahead!" because he doesn't know my case fully (only met him in the hospital in February), and that part of me will be like "is it right to go ahead and drive or not, because I'm still having so many POTSy issues". My friends, the ones i live with and who took my keys, have told me that if he clears me to drive, they still may not feel too keen on handing the keys over because I wasn't making the best decisions before they were taken... I was still trying to drive and do stuff, and I nearly wrecked my car more than once. I would pull over if I was having a problem, to let the feeling pass, and didn't get over fast enough... well, I did, but nicked a sign pole in the process. As much as I want to be out and about, maybe for my safety, I should be a hermit. Thats not the only dumb thing I've done pre-diagnosis... I dunno.

I cannot work at the current time, and it seems lately the only reasons I leave the house are for doctors appointments, but I do go to church at least once a week (I sit in the youth room above the family life center and listen to service, being down in the environment is too trigger filled), and afterwards I usually try to go to lunch with friends and the grocery store. Sundays are a big out day for me, as it's usually the hardest day of the week. I kept getting reminded of what my father said to my grandpa one time about going to church when you don't feel good: you can either stay here and not hear a message and feel just as bad, or you can go to church, feel bad and still get to hear good things. Kinda a warped way of my thinking, but I know when I don't feel good where I can go while I'm there to recouperate, so it's always worth a try. Some Sundays are better than others (last Sunday I got to drum with the band and sang a solo, a rare feat lately, but I'm paying for it dearly this week), but at least I give it a shot. I try to go to events, such as a basketball game or a track meet kinda sporadically, and doing these I have to gear up for in advance. I went to a track meet Friday and spent Saturday trying to relax and rest. Sunday did me in this week, so I am taking a week off of schooling stuff, don't have anywhere to go other than therapist appointment on Thursday. Might try to go to church on Wednesday for a meeting if I feel up to it and get a ride, but if I don't make it, it's fine.

And the Tuesdays at this moment! Im pretty sure the way I've been feeling, I've got upper management written all over me. Now where did I out that stapler....

I love movies, and on days like today when it takes everything I have to just go from the bed to the restroom 8 feet away and back again, they are the enjoyment I get. But then I started thinking about how ours lives can be like movies sometimes, and the first thing that popped up in my head was that cult classic "Office Space". Having POTS is kinda like living in the movie Office Space, this I have determined. The boss is constantly coming around the corner going "Yeah, if you could just cancel your plans and just plan on being in bed all day today, that would be great." Plans being things I want/need to do, being in bed because I'm flat out exhausted and symptomatic out the wazoo. And my flair is not in order either, so that could be a problem with expressing myself. O... dear. I'm just gonna... go watch kung fu or something. Just had to share. Hope you got a chuckle out of it if you know the scenes referenced.

Oh, I love Udi's, and now Walmart in my town doesn't carry them anymore!

I know I probably won't be going to another meet for a bit, which bites because I had a great time rooting on these kids I've come to know through everyone around me. Life is definitely different. I sang in church today, first time in ages, and the solo I did was so perfect for my situation. I've asked time and time again for this to be over, to stop the torture, and yet, I keep breathing and going. I'm just about to cry sitting here thinking about it... My therapist is trying to get me involved in some activities, one being a walking group that meets at our YMCA. He talked to the lady leading it and she said I could come roll along if I felt up to it, just to be out and talking to people. I try to do things at church, but often just stay at home where I know my triggers are minimized, any extra energy I can focus towards cooking or school, playing it safe. It just felt so good today to say I'm done for now. Not an easy choice for me to make, keep thinking I should push for more whatever... But I just gotta remind myself, I've come a long long ways since the start. One step forward, two steps back most of the time, but I'm still breathing. And after all I've done today, I so better sleep, lol... Worn out to the max with church activities, lunch with friends, and grocery shopping, I now have cankles a from my feet swelling and pooling, fighting a headache and been really tachy today. I'm done in for.

The fludro headaches for me are a reason I wished I DIDN't take this med, but I'm still on it.

Last year near the end of the summer, I got to the point I would pack an insulated lunchbox with ice, water, and a washrag that I could wet and start sponging myself with to cool off. Ice water only did so much, but this seemed to help a bit.