Becia

My qsart had me in tears. I would have rather gotten another tattoo than go through that again. My autonomic tilt was kinda freaky, as at one point I had no blood pressure whatsoever according to my records, and then it spiked extremely high before it started falling slowly. I don't do well with feeling my heartbeat, so once we hit 120, I was miserable and sick. The guy who drive me for this day of testing was a great friend of mine and had salty Chinese food and broth waiting on me, because I was so off my meds, I could barely function. I send lots of hugs!

I've had some doctors tell me I've had this stuff for years at a different level, but having my two heart ablations last year to deal with pvcs sent mine into a full blown situation.

I just started my beta blocker because just sitting and laying down my heart has a tendency to spike to the 140s and higher, but the side effects of the libido and exhaustion are horrible. My cardio also put me on it, because he though I had more high blood pressure, but when I asked about just reducing my midodrine or Florinef to control that better without dropping it too much, he just kinda stared at me, I'm being referred to another ep to look into a pacemaker to kinda slow my heart down when it needs it (they mentioned another ablation, and I'm like nooooooo!), because I have such a hard time on meds as it is. When they added the zebeta, my dizziness took off and I also have vertigo on top of my usual dizzy, which makes this horrible. And even with taking it, I'm still spiking my hr doing little things Iike laying in bed sleeping.

Thanks. We went, we saw, we came home. I honestly don't remember much, I was kinda out of it, but my friend who took me said they didn't do much, nor did they contact my neuro, so he's making some calls and we are going from there. When we got home, he couldn't wake me up, so I essentially slept in the car, which was kinda funny to me when they told me this morning. It's a comfortable car, that's for sure, and they had brought my shawl and pillow to me. Kills my hips, but I guess I had a seizure on the way home, and he couldn't get me awake to help get out if the car. I just know right now, I'm really tired. I feel like my body is going in opposite directions. Right now, I just wanna attempt to eat lunch, and nap some more.

Home health came out earlier, and had sent a message to my doctor about how everything was going, and they are sending me to the ER for a quick evaluation in the meantime of everything. Gonna be a few hours before I can go (waiting in my IV to finish and for my power of attorney to get home from work, then an hours drive to get to the ER of my neuro), but just double checking the hips and the fact I'm having more seizures according to the housemates, checking that too. I'm exhausted. I'm frustrated.

My pt was insanely awesome. I loved this guy and his assistant. He was fairly knowledgeable about POTS, and educated her before our sessions together, and they were both really good at letting me work at my level. They left me with a couple of Thera-bands of various resistances as well as some ankle weights, and gave me a full regime to do however i needed, whether in bed, sitting, or if I got adventurous, standing. While I was in session, I remember at least twice we did a standing check, to see if I had any better dealing with everything while upright, and both times we still ended up about my usual 1-1/2 minutes before I went out. I contacted them today to see if they had any other suggestions with my hips, seeing as they dealt with me when the right went out the first time, and are aware of how bendy I am. I'm hoping to get pt to come out here, but I'm not sure what all my home health offers at the moment, I have the number of an orthopedist, a doctors appointment on Friday with my usual doctor and am taking the info to him. We are trying some extra fluids in the meantime, and right now it's just "don't get up without assistance, don't do anything. ". That's so not in my vocabulary it seems nowadays, but it is what it is. I've made it back from this once, time to dig deep and make it back again. I'm working on getting some other assistance as well. But today I had a phone conference with my mental health therapist, and am taking his advice... Rest. Got a hot date with Netflix, the pillows I just ordered online (to attempt to support my legs better to be comfy), and another Vicodin, because I nearly fell in the bathroom trying to get my PICC line stuff for the nurse tomorrow, and my legs feel like fire.

The fridge microwave thing has come to mind, and I asked my housemates about it. The way the electrical is in the house, I'm a bit afraid to do this, as if we vacuum the floors and have a certain light on, it trips the entire house (it's like that with several areas of the house, just weird). I think out of sanity and safety, as my "compound" as I call my room, is wired to their home office and the modems and such, I best maybe not do that. But, when I do move out, I'm so investing in that for my bedroom, because I can see just having cold water available very handy. Huggins Naturals? That's what I will pick up thank you for the suggestion on that. My skin just goes nuts, and we've always made our own in our house before I moved, I don't think I've ever used a baby wipe amazingly. My roommates and I talk about the seizures, especially when they are happening so frequent, like now. As for videotaping, I don't think we have, but they said this morning I had two last night trying to get back to bed after using the rest room and getting my IV started, and that the past couple days seizures seem a bit different than what I had been doing, which may explain why I'm sore in a different way. I've been hit a lot with pre-ictil feelings, and I'm still feeling post-ictil this morning after resting/sleeping. Last night I apparently told them I didn't feel right, but maybe it was the meds, I wanted to use the restroom before they went upstairs for the night, so I didn't call them later and have issues requiring more assistance, I managed to use the rest room and wiggle back into my chair, but then they noticed when they came to move me and my pole I was tensing and not focusing, which is usually their clue that I'm likely to seize. I had asked them to stop for a second, I couldn't hold my legs up to get into the bedroom ( my wheelchair for the house doesn't have feet so I can use my legs to usually propel myself), and they were talking to me, but I wasn't able to follow commands. Had a small seizure in the chair, they waited for a bit, and I kinda came out if it, but after they helped me into bed, another longer one followed. After the past week, and last week, yep, a video tape I think is in order. I've got a call in to my doctor and the information for a orthopedist as well, for some braces. I can't even begin to let my hips heal it seems, because the littlest movement if not done right with the amount of support, pop they go. I hate to imagine the soft tissue damage going on, I cringe. I've inquired for some custodial help, and according to the people around here, I'm too young (even though I'm disabled), and I'm looking into another outlet for home health to assist me. Hoping maybe I can do some PT through there, so they can come see what a typical time is for me, the layout I struggle with, and how better I can strengthen. I think the last sessions of PT I had where I went to an office, were really detrimental. They went with the goal of making me stand and walk, but if I can't get the blood to my brain, there's no amount of standing and walking that will fix the fact I pass out so easily. Did get some good tips for working my legs, and that makes a difference strength wise, but yeah, I still pass out. I love this board, y'all are amazing people. Thank you so much for your advice and help and hugs.

And the seizures are pretty common when my body gets stressed like this, what scares me is they are saying these are different than my typical ones. I'm not sure how different, as i still feel the same yucky way afterwards, but I guess another thing to have to take fare of, I don't like scaring anyone. They keep saying I'm not too much to handle, but they have kids and lives if their own, and I'm so tired of losing friends to my condition. Everyone else seems to be scared around me, except Lori and Dave here at the house. But I'm afraid I might be someday, and no where else to go.

I'd had them both come out before, it's Ike that part is nothing new, but I'm seriously contemplating some braces now because I just change positions in bed, and it's horrible, calling my doctor again as well as the physical therapist I just dealt with to see if they have ideas, I have an appointment Friday, hopefully will have answers by then. I'm sending off for baby wipes tomorrow. I used to make my own, so using a store brand is a new experience for me, so I'm hoping I find a brand that doesn't make me itch. I got up today and started another IV to run overnight, and just wiped down with a wet cloth today, really wished I could have just thrown some body wash in the water, but started to get really sick before I was done, so it was just a quick clean up. We are researching further assistance, but unless my insurance covers some, we are on our own. I've talked with my housemates, and they are fine helping me, and understand how I feel to a certain extent, but stil... I'm freaking out because my body is freaking out, and what I really want right now is a hug. My orders are literally to do absolutely nothing, and I'm going stir crazy in this bedroom. I almost attempted to go lay on the couch, but the way the couch sinks, I knew getting arranged could be difficult, and that energy I knew I needed to start my IV (the house is afraid if my line, so I have to do evereythg for it, or have another friend or my home health nurse start it), so I opted to stay in my room. The house did pick me up some groceries today, things that don't require a lot if cooking or preparing, so if I feel Iike getting to the kitchen (which I don't, as it's in the other side if the floor plan ), I can make it quick, and they can get things ready for me too. It would be better if I could eat... I have lost the desire to try and eat, I always say I can only handle one thing at a time. I'm overwhelmed. I think if I can brace my hips, and get that to start healing, it would be a start. If I can stop feeling like I need to be evereythg to everyone, I can focus on myself and heal. But right now? I need a hug, another pain pill, and gonna watch my fish for bit. I love my fish tank in moments like this.

So sorry for the troubles you're having Bella. I have a PICC line myself, and we have been pushing for a port as it's looking like this will be more long term than we originally thought. I've had a couple issues with my line, but so far, no clots or anything, and it flushes pretty easy (just hurts more, I think from placement). This thread is very helpful to me.

Thanks y'all. She had been ill for quite some time, and she's no longer hurting or bed bound. It's a mixed blessing; I was my moms caretaker for years, until my health got severely compromised with my diagnosis and working through that. She was a special lady, and I'm really missing her. My housemates asked me if the hospital does anything different than what we do at home right now, and it was a yes and no answer. Yes, as they maybe might give me more fluids than what my current script is, maybe medication in a different way, or even some different medications, and they would make sure I eat on a more regular basis and can help me more physically with getting to the bathroom and getting cleaned up. No on the other hand, because I will still be laying in a bed, watching tv/reading/crocheting and sleeping, just a different environment that would have different triggers for me. The first thing that my therapist wanted to do was medicate me so I would sleep, instead if nightmares and the such. Something to slow my brain down. Can't say that would work, but who knows. And I also had to tell them last night for the millionth time, I'm afraid they will send me away. It was mentioned before that they wanted to move me to a nursing home to make sure I'm really over this huge hump when I've been downed like this, and no nursing home would take me because I just wasn't sick enough for them. They told me they wanted to make sure that I got the care I needed, that they couldn't do it for me, so now I'm paranoid that I'm too much for my friends to manage, because there have apparently been a lot of seizures, and a lot of issues that I just don't remember and am not aware of. I'm afraid of hurting them. They are afraid if hurting me. I'm just really frustrated that getting up, to the bathroom, and back, leave me so breathless, so dizzy and passing out like, that my spoons are just gone (re the spoon theory, I love that story and I use it to relate to). I don't see how washing myself down in the sink with a washcloth can take two spoons. It seems like such a simple act, but oh my goodness... And in my world, I've never been given the chance to just lay here and do nothing, I have always had to pick myself up and keep going. Well, my keep going done went. I can't explain that to my mind. I can't tell you how many hours I've sat here just trying to contemplate how exactly I would take a shower. I rest easier if I'm clean, and right now, I so totally need to shower. I feel just ick on top of ick. The rinseless shampoo stuff is kinda awkward feeling in my hair, but it is at least a bit fluffy, rather than a total grease slick. But I can't even raise my arms that high to put it on, so I have to ask for help. I don't know how to fix me, or at least get me back to where I was.

Well, I've been bed bound for the past week. On the 17th, I lost my mom, and we expected that while I wasn't out making the arrangements with the funeral home and such (I was in charge of the service, making travel arrangements, and things I could arrange with phone calls and emails), the stress of everything was gonna make me crash a fair bit. But, I have my IV fluids, my meds, and did my best at keeping my feet up and resting when I could ( which wasn't much sadly). I had two days out of the house for the viewing and funeral, then the next day at the threat of hospitalization by my therapist (I already hadn't been sleeping, but I wasn't getting even a nap in anymore, he was going to admit me and medicate me), I hung out in bed with my feet up and Netflix. Last Sunday, I apparently had some major issues. I went to church, where I apparently wasn't acting right (we think I was having mini-seizures, but kept chalking it up as I needed more rest), so instead of helping with the media, I laid down in the youth room and slept. Ate lunch and went to the store, decided to start my IVs for the then instead if waiting until Monday... According to my housemates, they found me in the floor in the bathroom, and couldn't wake me. The moment I started to come around and they tried to move me, I would seize. They got me into bed, and minus a doctors appointment to get some X-rays and pain medication for dislocating both of my hips, I've been in bed. This is reminisce of a year ago, when I was bed bound. Due to my hips being sensitive, they have been helping me to the bathroom and back, cooking/picking up food for me, and tonight, after much debate, helped me "wash" (it was that no rinse stuff) my hair and get my IV going, since I'm extremely dehydrated, and still trying to avoid a hospital. We've realized, even though I'm fully medicated, my feet being down for 15-20 minutes, I'm passing out and if they don't get me laying down soon enough, I'm way out of it, and have had more seizures, and those take more energy out of me. I guess in a way they are good, because they make me sleep, and sleep is something I really need. It's like I'm back at the beginning. I've made all these strides forward, learning how to manage things with this condition, and now, even getting to the bathroom and back has my heart soaring to 170 and higher in just those few minutes sitting down with feet down. Even when I'm laying here propped up in bed, I've watched my hr go to 150. It's like my body is having this major hissy fit, and I am so clueless as to how to work through this. I keep wanting a timeline, like this day or this date range, I will be better than I am now, I've gotten up once today, when I started my IV, did my hair, and used the rest room (yeah, just once... That alone freaked my housemates out today, but I was also afraid to get up while they were gone, lest problems arise, their tile floor is really hard). It was excruciating, not just the pain in my legs from my hips, but just the onslaught of symptoms. The dizziness, the shortness of breath, the racing heart rate, the lightheartedness, just all too much. I'm just ranting, as I know some here understand how this feels. I have things to keep me busy while I lay here, but mainly I need sleep. Even with about three things that have drowsy as a side effect, I'm still awake until 6 am, and only then I get about an hour. Maybe all of the symptoms I face everyday are magnified because I'm mourning (I've always been the one that everyone expects to have it together, and then fall apart later), maybe the months of insomnia and such, have left me in a more severe crash than I've had before (the fluids help though, thank goodness for the PICC line). How do you make yourself rest before you get to a crash? The seizures are a blessing, because they do make me sleep, but it's not a restful sleep... It's a "just laying here still" sleep. I guess still is better than my deep desire to keep going like crazy. Thanks for letting me rant. Off to take meds again, and try to sleep.

Awesome. The home health nurse just left and found it amusing that I dislocated my toes this last week. It's like weird things with my joints, they are rebelling is all I can say about them. Definitely looking into that board and information. Thanks so much for y'all's advice and help

Yes. When they did my swallow exam, they came back and said I had a delayed reaction (I would start to swallow, but then my body would forget the rest of the action). They think mine is from the vomiting issues I've been having since last year, really kicked into gear early this year, but essentially my body doesn't know it can accept food since it was going in reverse so much. Right now, it's not too bad. I do make sure I eat small bites, make sure my food is soft and "wet" (aka, using extra gravy on something that might be rough on my throat in the swallowing process is an example), and just going slow.

Due to funds, yeah, Baltimore would be hard (but man, I would love to go up there, I love history and cool stuff, and Baltimore has that, lol), but I'm def mentioning this to my doctor who's been taking care if everything with me as of late. Another weird question, is there anything they can really do for this? I know physical therapy is option 1, but what else? I have a feeling I'm regulating myself more to my wheelchair than I had been as of late (I'd just gotten to the point I could semi walk around my room/bathroom, although I still have chairs everywhere, and often times do lay on the ground), because the past two days just moving in bed, I feel my left hip going bonkers, and having to use my arms to push myself up more is causing issues with my shoulder which likes to go bonkers occasionally too. Each time I end up with hip issues, it takes about two weeks for them to be halfway normal again. Usually I have one good hip and can still manage things like getting up, down, showering, out if the house, etc... With the two now, my friends are having to lift me and move me more, and now I'm afraid if hurting them. And I sooooooo need a shower. I'm offending myself, lol, I guess in my mind, there's just peace in knowing why my body is doing what it's been doing. If there's not much they can do with it, okay, but just having a name to call it might help me mentally. And if this is something I need to take into consideration when I move into my apartment (like if I need a more handicapped accessible one compared to a normal apartment), it might help make my life easier knowing and expecting this to happen.

I did some pt as well, as they were trying to get me to be able to stand a bit longer than I currently am. In the middle of the sessions, is when my right hip had it's first dislocation actually. My therapist and I decided until my pots was better controlled, we needed to hold off doing more, but I do have some items to work on at home to help strengthen, but so far, we still have joint outs and "brain outs" as we call my syncope. Al I know is this is really painful and so not one schedule of stuff to do... I barely moved this morning, and popped my left hip out again trying to get to my chair to get to the bathroom. Bad hips, bad bad hips.

This past week has been something I just wanna throw out the window. Dealing with a death in the family, my POTS that has taken an upswing as of late, and just flat out exhaustion, I'm just fit to be tied. I want to rest, but my brain is wired for constant thinking and worrying. Apparently been having more seizures as of late, which has led me to my question at hand... EDS is pretty common for us POTS people. Now, I've tried to protect myself as much as I can, utilizing my chair, not putting myself into harms way, doing the best I can to lay down more, but with my seizures apparently, I'm having a few more joint issues than I really noticed. Take last night: yesterday was super rough, and I guess my friends and I debated if I should do an extra treatment of fluids. Apparently the answer was yes, because I woke up this morning with my IV going, and no recollection of what happened. Apparently had some seizures (and they thought I'd been having some small ones through the day,cause I wasn't acting myself), and in the process, I dislocated my hips. Yes, I said hips, plural, both of them evil joints. Usually one side goes out depending on how I end up falling, but my friends said last night I complained if the side that was turned awkwardly, but when they tried to help me sit up to get into my chair, the other side went out too. Sure enough, after I woke up a bit this morning, gathered some strength with my housemate helping me, popped them back into place for good (the left was already back, it goes in easier, so I apparently maneuvered it last night, but the right was a bit stiffer). I'm super bendy, always have been. With these major issues, plus the shoulders dislocations, and a couple minor ones (like my toes, that was just bizarre), I'm beginning to really feel like I need to push for someone to tell me what the world is making these happen, other than "you're a clutzy person". Is this possible it's EDS? Just wrap me in bubble wrap; it might be my only option, lol.

Best wishes to Tyler! And Zofran is awesome stuff, it always makes me crave pancakes...

Yep, that's been my norm as of late.

Yay for getting approved! I'm still in the fighting stages, but yeah, I'm doing the same process: admitting I can't work anymore, and not fighting it. The hardest thing I had to do this week, was contact my professor and school to notify them I am dropping out. I've tried everything imaginable, and it just wasn't working with my body anymore. Really has taken a toll on my mind, but in the end, this week when I've been ill enough I couldn't start my ivs alone, it was a reminder that it was the right decision. Instead of freaking about a report due, I need that energy to safely maneuver my day. I did get my state disability. ( ohio has this thing for $115 a month that after a year I qualified), and now that info has been turned over, I'm praying that my federal will come through soon too. I'm much lik my mother, I don't want to admit defeat, but right now I'm admitting I'm not strong enough to do this now.

Yeah, they had me nauseous and vomiting like crazy. The first time I tried them, I thought I already had some sort of virus, but the second time, it was the same effect and feelings, so I tossed mine.

I have a hard time driving 40 minutes away sometimes. I go out to lunch with some people after church usually every sunday, and the days where we go out of town for something different (because we have a small town with limited options), it kills me. Usually I try to nap in the time, but I'm not comfortable, my feet are down, and I'm usually exhausted beyond compare when its finished. My plan is to maybe try Columbus, go up there and have a good nights rest, go to the mall the next day, do my wandering around for a few hours, and then head back to the hotel to rest. I do plan on going out to dinner to a fancy resteraunt just because its nice to go places like that every now and then (and the one I want to go to is very quiet, lol), but i think just being at the hotel will be nice. Its not my home. Sometimes I crawl down the stairs to the basement when the light is too much for me, or I can't cool off, or just need a change of scenery. I kinda view the hotel that way. I view the fancy dinner as a chance to feel worthy. I know someday I'm gonna have to drive with someone to TX to take care of everything, and I know someday I will probably have to fly (and I loved flying before, but now everything has changed so much with my body, I'm terrified), but right now... I'm so dizzy with this new flare. I ran my own feet over with my chair because I was trying to keep from rolling into the wall. Taking a shower has become a monumental task right now because of the picc line and the fact I'm passing out easier for some reason. I just want to escape for a day or two. I might even just spend that time sleeping instead... on the days I sleep here, it worries those around me. Sometimes I'm just so exhausted.

I financially could get a hotel, but I would have had $23 left after all said and done. It bothers me that "Hey ask for help!" is what I get told so much, but when I do, everyone retracts back. And I know that they haven't dealt with me yet, and I've been giving them all sorts of info as they ask for it, and I know it was also 3 weeks away, but still couldn't make myself go through with it. Which was a good thing, because I called my lawyer today for my disability, and told them I was trying to get away for some family business (which I was going to do while there in the state), and they said if they found out I could travel, that ruins my case, so here I am. I'm not supposed to just roll over and let the world pass me by, and I don't want it to. But I also couldn't handle spending that wild amount of money, and then sit in a room all day down there because everyone who said they could help me, all of the sudden can't, or won't respond to my calls or emails. Maybe someday again. Maybe I just need to take a weekend and go to Columbus up here. That way I'm only a couple hours away from home, not having to haul my IV supplies, and there's public transportation. On a good note though: I found out I qualified for public housing and assistance about two hours after I cancelled my flight. Since I'm basically starting over from scratch (I live with friends, and didn't bring much with me when I moved, and my sister sold everything else I had), I get to outfit my home/apartment how I want to, as well as have a service/therapy animal. Maybe I can look at home furnishings and accessability items when I'm there. And maybe even bring back my therapy animal

So, it's been suggested by a couple of my doctors to try and a trip. Searched flights to tx for a few days, and even took the step of purchasing a ticket this afternoon... And then panicked. I debated for about an hour of "am I strong enough for this? How will I manage away?" And literally was in tears. I called my dad even to try and get someone to talk me that this was a good thing. I canceled it within an hour. I feel like a failure. I'm so terrified of going, knowing I'm gonna crash, people aren't gonna be okay with it and it's so hard to understand everything going on. How do you overcome this? I wanna go and have fun, not have fear. I arranged a direct flight and had a ride from the airport, but trying to arrange everything else while I was there wasn't happening. Add in the fact that my doctor told me yesterday that I'm probably as good as I'm gonna get, in terms of treatment...it just hasn't been a good week. Maybe someday I can try buying a ticket again.

Wished I had suggestions, but I don't. Every time I come down with something, I end up in the hospital for a few days it seems. Do hope you feel better!