Becia

Moved out of the rehab facility to my apartment today. It's been a very stress filled day, but I got the majority of the boxes my roommate had brought over previously, put away in some places where it won't interfere with my wheelchair, or make me trip over them. Have a new bed, and need to create a footboard for it to place it on my risers to have it with the head elevated, so sleeping flat for the first time in about 8 months, which is weird. It's obvious I'm still in a flare and the extra energy I expended at trying to make this place habitable for me, has really comeback to kick my tail. Tomorrow I have a doctors appt, followed by grocery shopping and then choir practice, but I think once I get groceries in here, and maybe a microwave, maybe I will feel more at home, and can let myself rest better.

All I know about the vaccines like the flu vaccine, is it never fails, I get sicker than a dog. And given how sensitive my system is, I don't think I could chance it. Haven't taken one in about 10 years.

Much love and gentle *hugs*. I feel the same way sometimes. I've been in this flare for about 2 months with an increase in several symptoms that my doctors cannot explain, been in a hospital, now a rehab/nursing home trying to regain some strength and figure out show to control my limbs while we search for further answers (if they are even out there), and I'm totally missing my prior life. I miss driving, I miss riding my bike, I miss living on my own and not being totally terrified. I am too just trying to tolerate little things. Some days are better at it than others. Right now, my goal is to sing with my choir come this Saturday. We have five pieces to showcase at this big festival, and I'm proud to be asked to join in, even though getting on the stage will be a challenge, and I cannot stand with the others. Things like that make me feel human again. I will pay dearly for the outing, I know I will, but I pay dearly for trying to get up before my meds kick in, so what's the difference anymore? If I do anything on any days just let me open my eyes and catch as deep a breath of fresh air as possible. I may just go from bed to the couch, but that's okay.

I want to go to Cedar Point someday, lol. We talked about doing that late in the summer, time just crept away from us. I love roller coasters, just can't do them anymore, but I enjoy the shows, people watching, etc. I've never used spanx, I only have my compression stockings and they are killer some days. I'm a bit leery adding more to it, but I gotta do something about these hips. My roommate here at the rehab fell again this morning, and I nearly disclocated a couple joints getting to the nurses station because they weren't answering the call lights. I think everything is back in place now, and thank goodness they have me in some decent pain control here. I'm a bit terrified that pain control won't be there when I leave. And hahahahaha, yeah, no panty lines and I bet you feel all skinny with all that compressions! You're a nut, lol.

My pt here mentioned using compression wear, like what runners wear, for helping at least tricking my brain into feeling they are better supported... I don't know if I could do two types of compression garments, one for my legs, and another for my hips. Very uncomfortable as it is, lol,

He does referrals to a brace guy, but wanted to try 6more weeks of pt 3time a week to see if we can strengthen them more. My thing is for me to feel any resistance to my muscles, I literally have to contort my body in weird positions to get any feel in them. He promptly told me to stop stretching, I don't need to stretch.... But I gotta warm my body somehow, to avoid muscle strain, I would think. He concures with the rehab sending me home with a better wheelchair, and with a wheeled walker for short distances as I feel stable enough to do so. I also got my insurance approval for my genetics consult too, so that's coming up. I guess braces are the next step if there isn't significant improvement through the pt.

We went to kings Island, and they are being awesome in helping me with everything. One of the ministers has been gathering items from a wish list for me, and found a couch, table and chairs I needed today. I'm overwhelmed by how much she is helping me out, especially when everyone is so busy and it's hard to coordinate schedules. By the timing that I'm seeing, we are hoping to move me this weekend, and discharge is on Monday. I had my last pt and ot sessions this afternoon, so I'm basically free to do what I need to do. Still nervous, as I passed out several times today (symptomatic because my feet have been down a lot, with very little rest/reprieve from hectic schedule), and my body is showing signs of a crash impending. Hoping my IV treatment tonight will help boost me a bit, as well as getting some good sleep (which is nearly impossible when you have a roommate that requires someone to get her up to use the bathroom every 2 or so hours... She doesn't drink a lot and she constantly goes, I drink more than she does and I'm not up nearly as much, lol). Time will tell. I just don't Handle change very well, and this is a big, big change since my diagnosis. I've been alone for a couple weeks at a time with my friends, house sitting, but the difference there is I knew they were coming back home. This time, I won't have that. And they will be about 10 miles the opposite direction. While I'm glad to be temporarily nearby to see my niece at school everyday (right next to the high school), I'm just a bit nervous of how she is gonna be if she find me on the floor with an injury again. Speaking of injury, results of my MRI were good, no tears or anything,but everything holding my joints in place is so stretched that it doesn't support the joint staying in place. We are trying more physical therapy on an outpatient basis in home, to try and strengthen around it, and am in line for genetic testing for any other connective tissue issues, but doctor is pretty sure this is EDS. His advice was "don't bend like that!" And for me to be as careful as possible. I'm going home with a new wheelchair, and they are also sending me a walker home if I feel like using that for any short distances, just as a precaution. I got equated to a human gumby doll today, lol. A stressed out way too bendy chick who could really use a margarita if her body and meds would allow.

But an interesting tidbit about this place... My rent is only $2.00 a month because of my income, and my utilities are currently only $20 a month because of my income. I won't have much, like I'm not sure I can do high speed internet there, but I have cell phone service, and I can tether to log in here. And it's right next to the high school, so I can listen and watch my niece in the marching band every day at practice. Little blessings. I'm a total band nerd, played the same instrument she is playing (percussion), and while I can't make it to the games this year, I can at least get to watch her practice.

That has been a thought, but right now I'm living on $115 disability assistance from the state, so cost could be a factor. I think once I get to the other apartment, which is more located to people, place, etc, I may not be as afraid, as I know I have a friend who is two blocks from the apartment there. I do have home health, occupational therapy, physical therapy, possibly skilled nursing coming out, as well as possibly an assistance group from our local aid office that can help with household chores and such, but there is a lot of time I will be alone it feels. I am a yoyo it seems, and my doctors agree that the best I can do is try, and if it fails, then it's okay to come back here and regain some strength. I do not want to be back here, it's been very hard mentally on me with literally, all the death, illness, triggers. Like I told the doctor today, I feel like in a lot of ways I'm too healthy to be here, but maybe not healthy enough to manage certain things "on the outside". Maybe this is anxiety then? I never feel anxious that I know of, but maybe this is how it feels? I'm pretty much to my own devices here, but do need help going places, etc. All I know is I want this stress gone. I want to shave my legs (it's been way too long since they've seen a razor or a bottle of Nair, lol). I want to Unbox my new mixer and make bread. Maybe when I get in and get settled, it will do better? I don't know. Don't know until I try. I'm trying to come up with anything I can think of that might help me when I get to my new place, whether it's a barstool to make sure I'm at the right height for the counters, finding a couch to make sure I can lay down somewhere else other than a bed, and figuring out a major grocery shopping trip to make sure once I'm there, I have everything I need to make something to eat, no matter how I feel.

Well, nearly a month has passed since I came to the in patient rehabilitation for my hips, and it's about time for me to leave. In the middle of my stay, my name came up on one of the housing wait lists I've been on for a few months, and I will be leaving to be in my own apartment. While I'm excited about having my own place, which will be better customized for my needs (aka, handicapped accessible, wider doors to fit a wheelchair, no carpet to fight, bathroom accessible better, etc), I'm a bit nervous. My flares vary in degree, with really this last one being one of the most severe I've had since diagnosis (was bed bound by symptoms, as well as injuring my hips severely as a result of passing out and seizing), and I've been really fortunate that I've lived with friends who said they were willing to help me however they can, and were there. This is now changing, I'm gonna be on the other side of town now, kinda separated from the world that I know I never had anxiety before, but this scenario has me seriously wondering if I'm ready to be alone. I feel Ike a little child right now, literally staying in tears because of fears. What if I pass out, what if I have a seizure, what if I have a severe problem and cannot get ahold of anyone? I've had friends tell me "call me, I'm there for you", and lately when I've needed help, they haven't been anywhere to be found. The difference here and there is at least with my friends, I knew they were coming home, would be there, and it would be okay. They would try to stop me from pushing myself too far, offered help, and now... I don't have a choice but to be risky on days I'm lucky to get out of bed, because there is no help. In the middle of this insane situation, the orthopedist I've begun seeing because of the hip situation, highly suspects I've torn ligaments/cartilage in my hips from the sprains, and highly suspects EDS as well based on how super flexible I am. He has told me surgery wouldn't help me if this was the case, because the eds would just continue to let my joints sublux and come looser and looser, thus not holding things in place. He's asking for a genetics consult with OSU to confirm, so I'm waiting on that. He showed me the X-rays and was showing me some measurements in the joint that are usually 25 degrees max...mine are 31 on the right, and 42 in the left, which was a bit freaky. While I've been building up my endurance here with physical therapy and occupational therapy, my standing time is still no more than 2 minutes if I'm feeling decent (min symptoms, med side effects, etc.) less if I'm not (which can be from exhaustion because I'm not getting enough rest here, illness, etc.). While I'm trying to safeguard myself and be ultra prepared, I still have that "what if" in the back of my head. Everyone keeps telling me I should be excited about this, but I'm really struggling with it. I just needed to rant to people who understand... I truly hope this new phase of life works with me somehow, because I feel like I have no place to fall back on if it doesn't.

For me, it feels like I go through time of my medication and therapies working, and then all of the sudden, they stop. Takes a few weeks of building back up, and then I'm good for a bit again.

agreed Katie.

its crazy, that's for sure. Today I met with an orthopedic doctor, who thinks I may have torn cartilage in my hips, and also is suspecting a connective tissue disorder with why I can't heal properly. Being sent for genetics testing, looking for anything, such as EDS, before we consider surgery to fix and stabilize, because if there is a connective tissue issue, surgery is most likely poor outcome because in time, the joints and such will continue to let things sublex. waiting foe that call, but trying to continue physical therapy for any benefit I can find, which is so far I still need a lot of assistance and adaptive devices. Stood for 15 seconds before my Bp plummeted, and so did I.

currently, looks like a minimum of a month, but they are also working on getting me a bit more independent, and also getting me my own place, and my insurance, depending on the certification they submit, I may be here longer. The more I read about the mestinon , the more I want to try it, thank you everyone for your opinions and experiences. my doctor here is keeping my usual gp in the loop, and am working on my specialists involved too. I see am orthopedic guy on Monday to evaluate my hips and joints. I am still apprehensive about every thing that is going on. Its a bit stressful, but talking with my friends, if j need to go back there after this is done, they want mw there, but right now is just trying to fix me. Get me ready to live again. just ready for a break. I'm noticing the littlest things are exhausting to me. I played two games of bingo today with the residents, and spent the rest of the time kn bed. I truly am back to the beginning again. And in the midst of this, I am looking at having major dental work, because from my seizures and falls, I've broken teeth that were already bad. If I chose the pacemaker down the road, I have to eliminate any chance of infection, and I admit my teeth are horrible, no matter what I do. When better to do this than now when I know I will crash, and they can help me rebound with help now.

I'm on midodrine, florinef, and IV saline for mine. They just now realized my potassium is non existant, and have me on a suppliment. Sometimes they can't even manage my symptoms effectively, just depends on how my body is gonna react. After all this time, I have just figured out how I can manage the side effects of everything, I'm scared of throwing some curveball my way, and not being able to manage. Getting my local cardio on board before I try the mestinon, just in case, because they are gonna be the people managing my care at the recommendations of this outside specialist. meanwhile, rehab is foing ok. Exhausting, but ok.

and this dude yesterday started me on 60mg twice a day, just full fledged.

I guess I'm wondering what is the goal for this drug with me, as the way he worded it doesn't make sense. He prescribed it because Dr Grubb prescribes it, but didn't explain the goal for use. Like our florinef is to retain fluids, our midodrine is to raise Bp, beta blockers to alleviate tachycardia and /or high Bp. What is our intent for using this, because I hate taking something without knowing I need to look for whatever effect. I guess its a self monitoring thing. I'm talking to the med doc here as well as my cardio dude, because they are the ones following me on this, and I value their opinions and thoughts. my gp seems to be my go to for everything, and he stays in contact with specialists. Kinda a weird deal, bur he seems to get more done than any other does. Being here at the rehab, I will have a new doctor, bjr everyone has been researching my condition, and having fresh eyes may help. Everyone wants to get me to a specialist, but right now, that's not an option, and the specialist I have seen, just sent me back with no more help or ideas, so here we are. I'm close to home, right down from family and friends, so at least I am local. Today is my first full day here, so its been busy but hoping to get really settled, figure out exactly I need and want around me. My dads and nephew stopped by earlier, one of my minister friends is visiting later. And bonus, my friends brought sushi a couple days ago. Just lonely being this young in such a different place. And with no internet, lol. I'm such a tech geek, I have my nook, iPad and computer here, when most have pen and paper.

whirlwind of stuff going on. I was released from the hospital yesterday, into a inpatient rehabilitation progam to work on my hips issues as well as further recouping of energy from this crazy crash. Its at a local nursing home, so I'm a bit freaked there, but I have a sweet older lady for a roommate who was so excited I was paired with her, and we keep each other laughing. Being the youngest patient isn't easy, and having the invisibility of POTS on top has led to a lot of educational moments. I'm also the envy of the ward because of the extra salt order, lol. Trying to settle in and make the best of it. today though, I saw a new ep guy at OSU, per the request of my cardio dude. While this guy was really hard to get, he did give me a script for mestinon. I know several here use it, what are your thoughts? Meds and me are crazy, so I'm naturally scared. He sis recommend a new pacemaker that monitors breathing, and then adjusts the heart to fit the rate, thus slowing down the tachy, but for me to do that, I would have to have major dental work and get rid of my picc to reduce risk of infection. I seriously think the fluids and picc are the reason I've done so much better with a few aspects lately. I can work on eating real food without being sick on fluids. The sodium and electrolytes are being better absorbed this way. Yeah, I'm in a pretty severe crash,just one of many, but I managed to avoid the hospital far longer than before. Given my stomach and its issues, I'm very hesitant to five this up right now. trying to weigh pros and cons. There was a lot of information thrown at me today. It sounds really good but again, what's the fall out? Still gonna need so much sodium that I will be dehydrated from vomiting. he upped that to 10mg from my 3-5 I struggle with.but that seems to be my big issue now, my heart racing, no oxygen, and passing out and waking with injuries.

Yeah, I've had those before, and honestly not sure what helps the weirdness afterwards. Usually I'm like that when my body just can't handle anymore, and it goes down for a long time.

Don't know about this, but i found a while back a connection with my blood sugar and my migraines. My neuro suggested I start checking my sugar one time when we were just pulling straws trying to find a reason for them, and I noticed if I didn't keep my sugar in the 90's and up, I was more likely to start having issues. I don't check as often now, but I do still prick my fingers and such when I get more symptomatic to make sure. Now that we believe my migraines fall under my POTS stuff, it kinda helps me monitor my body more.

New developments everyday it seems... I was admitted to the hospital on Saturday, and today they are moving me to an inpatient rehab place to work on getting my hips in better shape, as well as making sure I can fully bounce back better with my current flare. I will be the youngest person at this location, but it's where my doctor recommended, and apparently my POA had been working on getting me in there before he brought me to the hospital this weekend. I'm terrified, which has my symptoms up in arms, as well as fighting with my hips. But, this should help. I'm hoping there's wifi or something, so I can continue to communicate with people and keep my mental health in check. Becia needs her netflix, her reading, and her support forums, as well as the always going game of Scrabble. I rely on that game of scrabble I always have going with my friend more than anyone will know.

I do fluids at home via PICC line, and my labs always seem to be "fine" but yet, I'm needing at least 3-4 liters a week. And the slower I can run it, the better. Like my body absorbs it all better that way, and I don't end up peeing it all out until my body just physically seems to say "okay, I'm good". And the difference I feel is night and day. My bp can be high, low, in the middle, but the fluids always help me through stuff. I also have issues with my stomach, like taking in too many liquids and and not enough solids messes up my throat and swallowing abilities, but I get so full in liquids, that I don't get any physical food nourishment. Another blessing of the ivs, if I decide to try and eat a bit more that day, I'm kinda covered if I don't drink as much. Drinking Gatorade and eating salty stuff just makes me nauseated more.

I was in two different ssri's before, and both had horrible effects it's me and my symptoms, so off I went. I couldn't stop shaking, horrible headaches where I couldn't function, and passing out just as much as if I wasn't on it. I no longer will do any Ssri for that reason. I got enough making my life hard, I'm not tolerating effects like that.

How do you manage doctors at the you encounter who don't believe POTS and all it's idosyncracies exist? Like, ones you can't escape? I ask, because I'm currently in the hospital, mainly because the situation with my hips has sent me into a harder crash than we could manage at home, so we are trying to get me into a rehab for a few weeks to get them back strong and get me back to my baseline. This week has been a blur to me, as according to my roommates it's been seizure after seizure and I've been passing out a lot. I just remember wanting to sleep, which happens when I have hard times like this, but the end result of it all had me not eating and drinking because I was just out more than awake. My power of attorney and friend whom I trust, packed me up yesterday to the ER, and basically said we weren't leaving until something was done. They gave me a liter of fluids, and begrudgingly admitted me, even though I had a seizure in the parking lot, was in and out in the ER from pain and orthostatics, and then when they got me to the room, the admitting hospitalist came in, and went into the story we all end up hearing: that this was all in my mind, it doesn't exist, and I'm doing this for drama and attention, According to Dave (my POA), I came out fighting and got extremely upset, and rightly so. This isn't made up. The seizures are like my bodies response to severe stress, and with the recent events and the fact I'm in pain overload, yeah, they are frequent. But this doctor, basically spent a good half hour telling me I'm crazy, I need to see a therapist ande medicated (I see a therapist, medications don't have the desired effect with me), and this is all made up. And he wasn't nice. POTS is real. So are anoxia seizures, which my neuros have all said that is what happens when my heart beats so a fasts, the transfer of oxygen doesn't completely happen, so my brain freaks out, making my body freak out, and having the seizure is it's way if rebooting itself. I can't escape this "bunch of words and names that are really bad" because until my friends and my general practitioner that is working with my insurance have a rehab place and plan ready to go for at least getting my hips stronger, he is the hospitalist over my case. He is the one who wrote my admitting diagnosis, which he was nice and included syncope, but also added failure to thrive and mental instability. I'm not cool with those. I'm not cool with him telling me how I feel is invalid, stupid, and a drama ploy, or telling the nurses, so I get the "you're too young for this nonsense" lecture from them when I ask for help getting up because the world is spinning nine ways to Tuesday. How do you handle doctors who don't believe you? Can you let is slide off your back? Or do you try to bring up articles and information to educate? I know the earliest I can leave right now is Monday, when someone tells me what's going on with the rehab situation, but I have this sinking feeling this guy is gonna be a pain in my side until I do leave. To appease him, I've agreed to another mental evaluation, which me and my POA don't really see as a problem, but I'm just like... Pulling my hair out. He's about to have a ball of anxiety at him, because last night was no sleep due to seizure precautions, loud ward, and no amount of classical music could drown that out, on top of being afraid of forgetting everything, so I stayed up reading and noting. They are offering me Xanax. I'm about to say yes to one, just to see if I can rest and relax a bit. How do y'all handle these types of doctors?

Yeah, my doctor asked me about my libido one time, and I just about spit water... Yeah, what's that, I don't remember having one... They sound fun, ha ha. A friend of mine made me laugh when he asked in a roundabout way if I could go have a sex life, but then he quickly correctd himself by answering the question out loud with "I guess you don't have to be conscious for it, but I think it's more fun if you are..." I threw.a plastic bowl at his head.