Becia

Yeah, they told me no to everything beforehand. Anything that might skew the test, can't do, including the stockings.

As of right now, flying is my only option. The flights I've researched have all been fairly seamless, just getting the dates scheduled is a problem. I'm opting for one that leaves a bit later in the day, that way no morning trigger fest, and that are as little stops as possible. I will be using my wheelchair in the airport, since I can only stand a few minutes at a time. I will look at Marriott near my areas. I'm still debating if I'm want t fly into my hometown where I have friends, or if I'm gonna fly into where my cousins and uncle are. I'm trying to split my time between both areas, so I can see people, but have been entertaining the idea of just going to one location and people come see me, since travel is a bit hard.

I'm decent with sitting as long as I can prop my feet up or have them not hanging down for too long. On church days, when I find myself with them needing to be down more than up, I make sure I have my compression stockings on to help, but I prefer to have them kicked up somehow.

So my body has decided that it doesn't want to cooperate at the moment, so I'm laying in bed doing some planning and dreaming. I found out today that my state disability has been approved, and I am receiving a lump sum for the past months while everything has been processing. This is not the federal though; but Ohio has a state amount of $115 per month that I finally qualified for (along with permanent Medicaid, yay). This lump sum is a pretty good amount, and since I've been pretty decent at reducing my bills the past year since I stopped working, I don't have a whole ton that I owe people at the moment The responsible thing would be to put the extra away in the bank and not touch it... But the "please help me get out of this mood" in me is saying "Go home for a week." Home is actually Texas. I don't think I could go for too long, maybe just a week or a few days extra of one, just enough to recharge my batteries from here, see some friends and family, visit my brothers grave, see a few sights. Just step away from the life I know now as constant doctors appointments and lonely. I haven't been back since I left going in 6 years ago. I've asked my friends about who might be able to accommodate me and a wheelchair, but I started thinking about where to stay. Staying with some friends I'm sure isn't too big a deal, but when it comes down to it, I'm beginning to think a hotel might be a good idea. It might be nice to have a place to rest away from the busy of being with people at the end of the day, where I can have a more accessible shower, etc. Kinda like a "trigger-free zone". I've got great friends, but some of the houses are not very wheelchair friendly, so I know I will be wearing myself out there, and if I need to use my chair like at night to get to the bathroom, I may not be able to. And if I've remembered correctly, I can bring my Iv fluids with me, and do my treatments there too (which would help keep me from crashing too bad). Since it's a very large city, I have lots of available places to chose from, but just narrowing down price and accessibility. Is there anything in particular y'all look for when traveling? I found one of those mini-suite places that has a kitchen in it, and thought that would be awesome, I could certainly save on some food costs by hitting up my favorite grocery store with a friend (but i do plan to eat out a couple times, you can't go home without hitting up the old favorites). Ideas? Thoughts? This may all be a pipe dream in the end, but in case it does work out decently... I wanna be prepared, so this is a good trip and not one that I feel I tortured myself to do in the end.

My cardio started me off on 10mg right off the bat. Kinda saw that and went "really?" And his response was "you have high blood pressure, so yeah, you need that assistance too." Never mind the past three months of readings and information he wanted from me showed my bp being better regulated by me reducing my midodrine unless out and about, and tweaking my florinef as well. That brought it back to a high, but not super high, number where my gp and I agreed it should be. And I was semi functional, except for the fact I have some wild tachy. Now that I'm somehow coming down with something and my body is stressed, and right now, my bp I can't get above 110 at all it seems, which is on the way low side for me, so I'm slightly terrified taking something that is supposed to reduce that more, thus making me hard to function because my bp is falling back into the Potsie realm. Kinda funny, we take so much to raise our bps and all, and then it's too high in some cases, so they put us on something to lower it while we are on the "uppers", lol. Working in further testing, right now it's just getting someone to order it. My gp is an amazing guy, but even he admits he's still learning about this stuff. My current cardio has referred me to OSU for a doctor up there because I'm one of the worst pots cases he's ever seen and I'm out of his realm of care. And I appreciate him realizing this, both of them really. That alone makes me feels safer. My neuro is just beginning in my case, and only seeing the migraines, and his current thinking is if everyone else can get their act together, then he knows what he need to research and do with me. He has some experience with pots, and agrees this is more on the neuro side than the cardio side, as diagnosed by his collegue, but after my last clinic basically told me "yep, pots, go back to your normal doctors, they can treat it", he's not quite sure where to go. I'm still patiently waiting for Toledo, just to be told that my insurance isn't one that he accepts. I'm hoping by the time my appointment comes, it might be, or it may just not happen, which hurts after waiting so long to see a specialist that seems interested in my care compared to my last clinic experience. Honestly thinking about trying To go to the Vanderbilt clinic as well, even though I was denied for their inpatient research program, and it's 6hours away, maybe their outpatient might help get the testing I think I need? Or at least point me in the right direction. And frankly, a vacation would be nice. Even a few days. I kept telling my previous cardiologist that I didn't think the Paxil was helping me, but hurting. I, I guess like an idiot, listened when he said I just needed to give it time, and get it into my system better, hence why he upped the dosage and I obliged. I just want anything to work, so I can feel like I can survive this. That upping and messing with my dosage, and going was long as I did with it, had me in the hospital, which totally made me realize how much I'm on that essentially has messed me up more. I dealt with so many side effects, for what? It actually made me cry when I realized how many tried to hurt me. I didn't take it last night, and I haven't taken it tonight. Been vomiting enough today that I basically gave my body a break from everything except some Tylenol, a Claritin, and my liter of fluids. If I wasn't throwing up, I was sleeping off some seizures from yesterday. Tomorrow I see someone at my gp's office to maybe get something that will help reduce some of the dizziness, and once that calms down, maybe I will try it again. It would be great to sleep without my heart going about 120 or so, but not sure I'm strong enough to tolerate the effects.

When I'm well hydrated, I do fantastically better than when I'm not. I know my saline therapy has helped me bounce back from crashes easier, allowed me to focus on trying to eat actual food (I have swallow issues that get compounded by the fact I was drinking constantly for some weird reason), and its kept me out of the emergency room every week. I find if I run mine slower (usually overnight, 8-10 hours), my body really takes in the hydration better, and its not instantly hitting my kidneys and out the door. The past two runs though, I've upped my speed to 4-6 hours, because I've been dealing with extra vertigo on top of everything, and the later I have to wait to starting it, I'm not able to get it started properly (I have a hard time focusing in). I wanted to start my treatment today earlier, but had a doctors appointment, so I'm currently running it on the faster side. Anytime they've run it wide open or within 2 hours at the ER, its run itself right through me, and I don't really feel the benefit. I currently have a PICC too, and this one should last a year with great care. It took several months of fighting for it, but the saline therapy has been a great tool into my treatment. I just dislike that when I get one thing going great, something else is going wrong.

I'm thinking the Zebeta is gonna be a no for me. Took my second ever dose last night, and spent the day sicker than sick. We looked up the side effects, and all if mine have shown up in the "overdose" list, which is telling me yeah, my body isn't handling this well. Don't know if titration would help or not, but something that is dropping my bp when my bp has been residing in the low lands lately, doesn't help me. Today, I've struggled to sit up, to stand has made me hit the ground. I've had several seizures, I'm dizzy upon dizzy... I'm thinking this isn't gonna work. But giving up after two days, really bothers me. I guess I worry about what others may say, like I'm not trying hard enough or something, maybe if there was a way to control this extra dizzy on top of my usual hat I can tolerate. Maybe this is all just a major, major flare, because I'm super stressed with home and family life. Maybe I'm doing too much, But if I haven't been unconscious today, or asleep, I've been in tears from pain, frustration, constant vomiting. I'm not taking it tonight, may give myself a few days and try again. But right now, I just wanna attempt eating this banana (which the smell is making me sick, but it's on the easy foods list right now), set my alarm for my doctors appointment tomorrow, and sleep some more.

I've had this discussion with my doctors, and I had one basically tell me "why would you want to not take your meds?" I told him I wasn't asking to not take anything, but maybe reduce something that seems to be causing more issues. I keep getting harped at for my hydration, well, I'm throwing up my toenails sir, that's dehydrating. No wonder I have refeeding syndrome half the time, because my body just naturally goes in reverse now. I can tolerate the midodrine for the most part. The florinef I was in my doctors office two weeks ago crying going "I can't do this anymore". My gp is great, as he's been letting me dose myself how I feel I need to, since I watch my bp and hr very closely at home. But since I've reduced it to once a day, my bp has tanked, so it helped there (maybe a bit too much even, it ran 140-150 systolic, now I haven't been able to get it above 120, running more 100-110 systolic). But agony. Headache, vomiting agony. I just keep thinking back to the Paxil situation past February, and all the seizure activity I've had lately. I don't ever want to feel Iike that again. I'm willing to try things, but there's gotta be a line drawn, and more importantly, the doctors need to respect how I feel with everything. Some are great, some arer kinda "eh". Just curious of everyone else's level of tolerance and how long do you try a therapy.

Just curious. I know we all have different levels of tolerance to things. I'm beginning to think I'm the biggest wimp imaginable. I'm extremely sensitive to medications, and have a wide variety if side effects from every single one of them. Some are mild, like the scalp tingle thing the midodrine does. Some are severe (to me, at least), like the constant migraine level of my dose of florinef (0.2 a day). Several of my meds cause increased dizziness, headaches, sensitivities to sunlight, sometimes trembling, and even had one that increased my seizures. Lately though, I'm getting frustrated. I'm finding myself going "is this my condition, or is this a medication for my condition? Is it worth trying to pursue using this treatment if it's going to make me feel______ (enter whatever side effect I'm dreading)?" It's such a touchy game we have to play, the weighing of the pros and cons. And after spending three days in the hospital this last week for a possible infecte picc line (so far, everything has come back okay, and it's still usable) and a new diagnosis of peripheral dizziness (aka "you have vertigo on top of vertigo" according to the neuro consult), I keep thinking about this. My cardio had prescribed Bystolic for my tachycardia, but my insurance would only cover Zebeta, so last night was the first night on it, and wow... Um, yeah. I didn't do well with it. Maybe it's because I'm super duper dizzy right now with everything, in the midst of a flare? It just made me feel even more off. I've weighed the pros of midodrine, and the problems I have with it, I can mostly tolerate because it has made sitting up a bit easier. I keel going back and forth on the florinef, because I am so susceptible to migraines, it's hard to see how having a constant headache that makes me extremely ill to the point of being hospitalized for dehydration a lot (which picc line does help, as long as I can keep it) can outweigh it just making the midodrine work longer. The current meds I'm on for my stomachs pyrotechnics (aka, vomiting), dizziness and headache. Sometimes the meds work, sometimes they don't. I try to stick it out for a couple weeks to really give myself a chance, but even after all these months on everything, I'm still suffering those side effects they said would go away. I hate to think I could be on something that is harming more than helping (and I've been there with my Ssri crisis beginning if the year, and my pain medication fiasco), but at what point do you go "okay this isn't working, next treatment option please?" Don't want to look like I'm not willing to try anything and everything to help my case manage better, but at this time, I'm feeling like everything is going back to pre diagnosis problems, and everyone is adding meds, but not taking any away. And maybe I'm just frustrated now because of this new development. I just got a grip on how I needed to do certain things, and now everything I can manage reasonably, is heightened to a level of insanity, lol.

I'm currently not typing well I think, because I'm so dizzy I can't seem to focus on anything. And it took me a few tries to really read that, and then I was like "oh no, I'm gonna get another message of edited post, lol".... I really wish I could get voice to text working on my iPad, lol.

Shirt... Lovely autocorrect.

I've gotten to the point I dress for comfort. I have a couple pairs if yoga pants, cami top with bra built in (no metal), and a shirt. Sometimes I even make sure I'm wearing underwear, lol... (Yeah, there might have been some brain fog moments.). I go in how I feel, no make up, comfy clothes, etc. if I'm wearing something that doesn't feel right to me on that day (sometimes clothes just hit me wrong), but I look nice, they never take me seriously. If I go like I'm about to fall into bed after I get home, they seem to realize that it takes a lot of effort for me to get going. Lovely auto to correct... Had to fix a bad word thanks to my iPad

Glad I can make you laugh Rachel! For what it's worth, I'm currently in the hospital dealing with some bad symptoms myself, and I keep er reading my letter as I can (I'm so dizzy right now I can't even sit up) to stay motivated, sometimes you just gotta get mean with your condition.

LOL, yeah, he's starting me on 10mg off the bat. I was having to research the size of pill because I wasn't sure I'd be able to swallow it, and everyone's going "titrate!" and I'm like "Homeboy is going full force here!" Yeah, standing, laying, sitting, my BP has been INSANE lately. I totally need a break from the 140's.

I'm afraid of my bp dropping too much, it's been running 130/90 or in that range, but when I'm sick (like now, even though I think this is just a crash and I'm exhausted), it falls a lot lower. Today, it was 118/88. Even after I got home and drank some water, it only came up to 121/90. And all of this bp is on a 30mg a day dose of midodrine (split 10mg at a time of course), and a double dose of florinef. So I know I'm coming down with something if it's bottoming out after all of this. I've never had the tachy sustain for this length of time. Normally I can lay down for a bit, and I'm okay, but even laying down has been agony because it's going so fast and so hard. And of course, my bed is angled, so it feels like I'm standing the entire night, which doesn't make it better. My friends had to pick me up off the floor last night because I kept passing out. The outs were bringing my hr down a smidge. But the moment I moved again and came to, hello crazy spike! I couldn't stay concious enough to get my Iv going last night, I know the fluids would help, but I keep passing out, knowing my luck I will screw something up, and not be awake to fix it in enough time, and the Iv stuff freaks them out. I'm giving my body today to see what happens, and then I'm calling doctors to beg for something to make this stop so I can rest. It's wearing me out. I know some who have a higher hr, so I'm trying to not complain about it, but I'm just like "something has to give". And yeah, I'm freaking about more ablations. I asked his opinion on how ablations are contridicted in us, and how that might impact everything, and he really didn't have one. The nice thing was he did admit I was a little out of his realm of treatment options, since I'm such a zebra (although I'd rather be a fabulous flamingo, they are pink and cute, and stand on one leg, whilst I can't stand on two, lol), and he didn't want to do anything to endanger me further. He's none to happy I'm still using a wheelchair while out, but once again, they frown upon you laying down in the walmart parking lot. Better safe than sorry.

Sounds bizzare, but that's how I feel now. Met with my cardiologist, who wanted me to track my symptoms for three months while he got my records from everyone. While I've got my blood pressure under control, my heart rate is running 145 and higher, and with it constantly running so high, I'm flat out exhausted, and it's wearing me out. He gave me a script of Bystolic (anyone take this before? It's a BB), and is referring me to Ohio State University for possible ablation of my sinus node and a pacemaker. I explained to him I'm a bit apprehensive of more ablations, since OSU told me it's very likely that my two ablations last year set this off in me, but I guess if they are "killing" the sinus node, there won't be anymore tachy? And my insurance requires preauthorization for my Bystolic script, so it may be end of this week before I get to try it. I am so frustrated. According to him, I'm the worst case he's seen. All I know is I'm exhausted. With me standing, my HR is reaching 180s, and I'm beginning to get concerned that it won't be backing down, but I'm not sure exactly how to go get help getting it regulated in the ER. Or if I even need to go to the er with this, it's POTS, tachy happens... Need a break from being that rare patient.

My body doesn't get any good out of running the liter that quick. It goes straight to my kidneys, and out. And it almost sounds like your body was getting "shocked" by the fluids hitting it. I get that same feeling when I have to flush my picc line, and the intense hit from the saline I use kinda screws me up for a bit, but then it resolves. I hope the iv therapy helps you Its made a pretty good difference in me.

lol, if I can't go bowling and run POTS over, I guess I'll beat it out of me, lol.

Don't know of a DVD, but there's a yoga studio here that does a class that is made for people with physical limitations. I took one of these types classes, and liked it, except for the fact I kept trying to push myself too much. It was okay, I do wish I was able to lay down a bit easier and do some of the leg stretches a bit more, but I had my mido in my system, so I could feel my bp hitting "danger zone", and all the standing ones were out. I basically was regulated to sitting cross legged for everything.

I keep trying to remind myself I'm not broken, just having one of those moments I need some tape and glue. My goal this week is another bubble bath, but without the allergic reaction, lol. I almost did it today, but I have a drumming lesson this afternoon that I'm saving my spoons for.

"BECIA GOT A BUBBLE BATH!" - after last week's crawl to the basement bathtub. Never mind being allergic to the bubble bath I used, I had bubbles, I had warm-ish water, and I smelled pretty, lol. Also... "BECIA STOOD FOR MORE THAN A MINUTE!"

I declared war, but then got pretty broken really. I have given up the idea of a full recovery to the point I was before all this happened. Maybe this is a stupid move, but I'm looking at everything going "okay, I used to do it this way, how can I do this activity in a way I can still enjoy and its workable for my condition?" I'm currently taking a break from any further testing to WHY i have POTS, but just merely going "Okay, I wanna do ____ activity, how can I do it?" Like last week, I took a bubble bath. That was my major activity for the week, how can I crawl safely to the basement bathroom, wrap my picc line up, and enjoy a bubble bath. I did it. Passed out several times in the process, but didn't further injure myself, also had to rest on the couch down there before I crawled back up to my wheelchair, but I did it. And I smelled nice, and was all toasty... and even when I realized i'm allergic to the bubble bath (oh that was fun, lol), I laughed at POTS and said "Ha ha evil-doer, I got my bubble bath." My nickname for around me is Potsie. POTS may be a bully, but I'm gonna poke fun at it just as much as it does me.

I've never had moons.

I have a lot of nosebleeds, but my doctors think that's when my POTS is in a hyper-state, so my BP is really high and thats how my body reacts to it. Hasn't happened lately, which is nice, but when they do happen, they take forever to stop.

I get weepy when I panic. I can't stop crying, and I've had a lot of those moments as of late. Yesterday I did something odd... in one of my panic/upset moments at how my life has become, I wrote a letter to my condition. I called it out by name, calculated how many days this has been associated with me, told it all about what I was doing before, and how I've become now, and then I challenged it. I challenged POTS just like all the people in my life have challenged me. The worst thing you can say to me is "Oh, you can't do that because ______" (the blank being whatever reason, being a girl, being a big girl, whatever they have hurled and insulted me with), because that phrase just makes me so angry, and I want to prove the naysayers wrong. I called POTS a bully. A "push me over, attempt to break me" bully. Instead of lunch money, its robbed me of a freedom. Of a job. Of family. Its a bully that says "Nope, you can't do that, cause I'll make you sicker." POTS is the voice of all those people who'd said I'd never amount to anything, graduate school, ride a motorcycle, bike race... anything that they said I couldn't do, I took that as a mission to do it. I ended the letter with positive reinforcement to myself of telling my bully that I will overcome. Yes, there will be setbacks, but I'm looking at this as you're a bully, and I will defeat you. Won't be easy, battles will be fought, but I WILL win the war. Oddly, after writing that letter, I felt at peace. I felt calm. I felt exhausted, and honestly, as one who's always taken care of other people and never of herself, I felt like I deserved to sleep. I know everyone needs to sleep, but I always felt like I didn't deserve that rest because I had so much and so many depending on me. I have a lot of fight or flight, everyday is like that. But right now... I am at peace and I can let myself rest easier.