Becia

Sounds like an amazing trip and sights!

I don't really have any advice for you, except I know how you feel with how your family talks to you (aka the pushing through speeches). My dad does the same thing to me, and my sister is the worst. My therapist once told me that I could be blue in the face trying to explain to those around me how I feel and what's happening when I do one of those intense days, if the other person isn't gonna get it, it doesn't matter how hard or long I try to tell them. I've said my peace, and once it's out, it's upon them to get it. There was one moment my dad actually got it...I was shocked. He's back to not understanding sometime again, but again, I've said my peace. If they refuse to see it from my eyes, or take into consideration what I'm saying, I can't change their thoughts. I've pushed through a lot of stuff before, just for the sake of my family, and in the end, when I ended up in the hospital from doing too much, it surprised them. Going out to the store isn't just a casual lets jump in the car and go. Dad experienced this last week when I had to vacate my apartment for two hours because of the exterminator. I was sick as a dog by the end of it. He kinda got it then. For my family, and myself, we are all having to see that I'm not the same person I used to be. Hard to admit, especially since I did everything before my body crashed, but it's there. I have one day a week that I go all out...store, church, lunch with friends. Sometime it's not the day after it hits me, it's the day after that one. Today is an example of that, I had a procedure yesterday, my friends thought I was fine aftere brcause I was up and making dinner for myself... Today, I can't get out of bed. I look great, but sitting up isn't happening. I'm rambling, my meds for my migraine are making me tired. I agree, print out what you wrote here, let them see it. And just know that you've said your peace... Some will get it, some will not. Some will get it and then forget it even...but you've said how you feel, stand by it, and you do what you gotta do to survive this life. Where did you go on the cruise? I did a 12 day Panama Canal cruise several years ago...it was amazing. I think for me, that's how I'd want to take a vacation again, because there was always something to do on the ship, if we didn't feel like going on shore (my mom was with us, and she was disabled, so sometimes we didn't leave). Kinda hoping I can take one again soon.

I have amazing friends... They have been my family for almost 2 years, when mine basically dropped me when I couldn't do everything I used to. Test is done, and I'm home. They stretched my esophagus to aid with swallowing, removed one polyp, and did mulittle biopsies of my stomach and such. I had an omelette for brunch, and was able to eat the thing without having to stop three steps in and throw up. It was lovely! But now, I'm at my friends house, curling up in my old bedroom, and sleeping as much as I can.

Thanks yall. Yep, my prep started at 3pm taking some pills, and at 5pm, downing 8oz of this stuff every fifteen minutes until gone. I got to the last couple cupfulls before I threw in the towel, I was so weak, shaky, and throwing up I couldn't tolerate myself. Everything was clear anyways, I've been horribly sick to my stomach this week anyways. I managed to make it to bed before passing out. Currently trying to wake up and get ready to go. Packed my things last night in between everything, but since I cannot be medicated, I'm extremely symptomatic and weak. My friends assured me that my bed is ready for me to crash, just bring my pillow, lol. I am hoping they can give me something for nausea while I'm there, because I know I need to eat before I sleep this mess off, and I quite honestly want pancakes.

Lol, my friends have seen me try to walk lately, my joints are so loose and I'm so symptomatic most of the time that one said it reminded him of a newborn giraffe, and that's not a cool way to look. I guess trying to stay upright when the blood pooling really hits, and keeping my legs in the correct place (they form a C when I stand upright), it looks goofier than me whizzing around the corner for a drink at the corner store. You'll get the hang of it. I think SarahA33 put it best to me one time "think of the end result." The end result will be your independence, and saving your energy.

You will hit things, but then you will learn your machine, how your hands will operate the joystick, and you'll find a comfortable position to sit in that optimizes everything. I Still have moments of being imtimidated, but you do get the hang of it. My intimidation comes from the sidewalks and trusting my jazzy to make it across some of the rough spots I encounter without issues. You will get the hang of it, just gotta go out there and try it. Start small, don't go on a one mile "walk" right out the door. I also jokingly forwarn people that I'm a bad driver, watch their toes. I have yet to hit a person. I did hit a bird once, but never a person.

It's happened to me now. I got my partial yesterday, told to come back today for the rest... Went back to pick that and my Florinef up, and got told it is back ordered until middle of April. I luckily have some extra from when I was sick and didn't take it so I could lay down and rest, but Yep... Getting harder to find. They are going to try and get another manufacturer that I can swallow, since the other is out of the question due to swallow and efficacy.

It is the 4 liter, lol! It's so different than my last one. The last one was easier, very little drinking of yucky stuff.

Thanks Katie . I went and bought some non red Gatorade today (I usually only like the red flavor), I'm just ready to get this show on the road.

I have emergency ivs (two liters), and am going to run one Wednesday (my schedule this week is Sunday, Tuesday,Thursday,Saturday), while I'm doing the prep. The prep for this liteerally sounds like something from a horror movie.... I start drinking this mess at 6pm on Wednesday for a 8am procedure, unless they tell me diffrerent. It's a lot to take it, and then lose really fast for me, especially with how my body holds on to hydration.

Welcome all!

I use a manual and a electric chair. The manual is for when I'm at home, or out with friends, because only one guy has a lift for my electric, and my body varies in letting me push myself, or having to use my legs to pull me. Some days I can manage it, and I joke it's my workout. Other times I'm like "alright, push the POTSy, because POTSy don't have it today". My Jazzy, as I've named my electric chair, actually came around by accident. My doctor mentioned he wanted me to keep as much independence as possible, and that maybe using an electric chair to get outside and enjoy the fresh air would be a possibility. I agreed. Two days later, a lady from my church called and said there was someone selling theirs, and asked if I was maybe interested. They church bought Jazzy for me, a $6,000 machine, they paid $200. At first, she was intimidating. I didn't have the mental image of wheelies, I had the mental image of getting hit by traffic, because I was crossing a street and passed out. I was so so scared. I made myself use it to take the trash out, down the hall of my apartment. Wow, that was kinda nice! No balancing on legs and exhaustion. Just put can on the foot platform and go. Decided to take it outside my floor and went to the lobby to chat... Wow, not so tired and dizzy. Finally made myself go down a few blocks outside, and into a store with it. While that was nerve wracking (kept thinking I was gonna take out a display or two), when I stopped to pay my rent, I was shocked at how much energy I felt. I hadn't driven in over a year, and here I was going places for myself! It's truly helped so much for me, both chairs have. I can safely manuver how I need to for my body. Sometimes I can manage chores with my manual, other times I break jazzy out indoors for them. If I need a gallon of milk, I can go get it myself instead of begging friends. I can get to church myself (I come home after to switch chairs to go to lunch with friends), I can go to social events... Before, I just sat at home, because I had a hard time simetimes, finding rides to things. People worked, I dont, and it was hard. Now, I can go participate in life again, safely above everything. I've made a lot of changes, and going from an able bodied human to in a wheelchair in 6 months, was very hard, not lying. But, having my chairs has opened up my independence and mindset so much. During Christmas, I was really depressed, so at one point, I just got out and went down the street to see Christmas lights. I couldn't do that before. It's gonna be a challenge in the beginning. There are times I am still challenged by Jazzy... But then I look around and realize, I came to the store alone, and I can buy tampons without embarrassing my guy friends who typically push me through the store. Some guys handle that well, others are like "really, I gotta watch you chose tampons?!" Grand theft auto... lol, I'm trying that today, I'm going to the grocery store in a bit for a few things I forgot yesterday... I can see it now... I'm gunning for my friends husband who works in frozen, and my chatter guy buddy who works in the meat department...

Yeah, and the prep for this is different than my last test, so I'm freaked out. I have to drink 4 liters of this wonderful (sarcasm!) stuff, and with my stomach not emptying right, I know I'm gonna be throwing up a good portion of it. Maybe it's a good thing I've had issues the last few days, there can't possibly be more in me,,, I do IV therapy at home, and have adjusted my IV schedule, so I'm running them during the time I'm prepping, and on the day there, I'm asking for extra fluids too. I live lightheaded and dizzy, so more makes me very anxious. But again, my friends have been there since the beginning of everything, so whatever my body decides to try and do, it won't get far with them, they know just what to do.

Just an odd question for those who've had this done, what was your recovery timeline? Like, when did you feel "normal" again? I know they can take a lot out of you in the prep, and then some of us don't respond to the twilight medication well, so there's another added stressor... I have this wonderful test scheduled for Thursday, which puts me exactly three weeks since my surgery, in which I'm still struggling with getting my energy back and with pain (I have EDS as well, so that may be playing a part in it). I've called the schedulers and asked for the first appointment of the day, knowing I'm gonna be dehydrated and my body will be stressed, in hopes I can get extra fluids and such and get this out of the way. My friends who I stayed two weeks with, have already gotten my bedroom ready, because while Im back at my place, I am still struggling with my everyday tasks and energy level. My surgery seemingly put me back to where my sitting up/feet down limit is back to just an hour or two on a double dose of midodrine, still weak, etc. I'm apparently going to stay the weekend with them to ensure I've bounced back and properly rehydrated, which is a very big deal with me. Given how I respond to medications as well, they are knocking me out like they did for surgery as well. So, how did you fare for this? Were you up and going later that day just fine? Or did you need a few days to rest up, get strength back, etc? Just wondering.

I was told 3 liters a day. I hardly ever get that in though, because when I try, my stomach doesn't empty right, and I get full on fluids, then I cannot get actual food in my stomach, which leads to me throwing up more.

*waves* what up... Glad yall are here.

I pass out quite easily. its no longer terrifying, more annoying than anything depending on who's around me.

I've slept all day today as well. Got up and started my IV treatment this morning, slept, friend finally woke me up enough to eat, went back to sleep. I got up to disconnect IV and eat some dinner, am gonna attempt going to kitchen and picking up some salt for rinsing my mouth (had surgery and doing salt water rinses) and a Popsicle, but I'm sure I'm back to bed after this.

I too, have weird foods that help calm me when I'm nauseated too! I take a lot of heat from a friend of mine who keeps preaching that when I'm nauseated and throwing up, I need to be on the BRAT diet (bananas, rice, applesauce,toast), and that potatoes are hard on the stomach because of starch. But yet, a potato is the blandest thing to me. And when I'm throwing up the brat diet even which has happened, I tell you, applesauce to me burns. So I eat a bite or two of potatoe when I can manage it. I also like waffles when I'm sick...they are dry like toast,but not abrasive to my sensitive throat. I have some gi testing coming on 3/19, I'm hoping it may shed some light on this part of my life.

Lol, I woke up, got to church, and passed out for three hours. Got up from that, went to lunch with my usual group of friends, passed out while trying to eat, came home, took a five hour nap. I've pretty much only gotten up now to eat, take some medications, change my clothes, and go back to bed. May not even make it to change clothes... Dinner has suddenly become a pudding cup and some water.

Yeah, it was horrible for me, sadly. Twitching, severe abdominal pain, never slowed my heart like they had expected it too. I was on 60mg twice a day?

I've had three different doctors tell me my body just doesn't do well with salt in my stomach. I can do it IV, no problem, but even when I start getting the slightest sodium in my gi system, look out world... Nausea, vomiting, gi distress of the "I'm never leaving the bathroom" kind. With as much as we have to take in (mine is currently 10,000mg a day), I'm grateful for IV days, because there's 9,000mg right there. I can do a little bit diluted in my stomach without too much issue, but like lately, I've been drinking broth, and it's bothering me again. Just gotta ease into it, and not suddenly slam myself.

Got my PICC line just reinstalled, and they moved it to my left arm. My right arm, upon ultrasound, seems to have w blood clot, and the line just merely had worked its way out. They (the PICC tewm) are going to push for me to have a port implanted. While I'm one of the few they have thwt never had issues with her line other than this one, the fact I'm doing this all long term, port would be better, and they have some major pull with the surgeons here in getting them in. So the ones who told me they won't do them because they want to know when they come out, and mine will be in longer than usual, they may just not have a choice but to install one. Gotta have an ultrasound to verify blood clot, and if so, that treatment. Woohoo. BUT, after I got done having this new line placed, I got the bestnice cream I've had in a long time, lol. My friend who drove me found w Coldstone creamery place, and hello chocolate ice cream! Tastes so good and felt so good. Becias ready for a nap. How's about it yall.

I so almost called you last night Sarah!! Even D mentioned "do I need to get that blonde chick back on the phone, she seems to know how you feel better than I do" on the drive (or the slide) home. I just got off the phone with the PICC team, contacted my doctor to send the new order and info over to the schedulers, and if I can have all arranged by 12, they can fit me in this afternoon for a new line. If not, it will be at least Monday. Guess eating was nice while it lasted, because If it doesn't happen today, I'm gonna be pounding salty drinks and water, which means no place for food (gasp, no pudding!!!!) We at least are not at a level to get arrested at now with the weather. I'm taking a nap. I just had a call I thought was from the doctors office, and it was one of those spam "you won!" calls...said I won w sunny cruise for me and my guest. I wish!

I was laying in the ER waiting on my friend to come get me and chatting with the nurse, as she's seen me several times, and we said the same thing,.. It's like a cast of follies of what else can happen. Get home, throw out my hip, and I guess I had my answer. It really was the topper for a very odd day. I'm trying to get back to my baseline, so I can go back to my apartment. I had hoped maybe today or tomorrow, but I can see thwt won't be happening. I can't wait for baseline again. But someone pointed out, even thought I'm struggling, I have been more aware of what's going on, which is good. Normally I'm not, but staying in bed with feet up has helped.