Becia

Has anyone else experienced a delayed medication reaction, for lack of better words for it? For example, I've been on mestinon since September, and I've had some side effects ever since the first dose, but as time has gone by, these effects and reactions are getting more and more severe and harder to take care of. Nausea has given way to serious serious vomiting, my muscle twitching started off as not too bad in the beginning, and now everything twitches after a dose, to the point my eyes go insane when I try to focus, and when I do stand, my body feels like jello with as much twitching my muscles do. In the beginning, I had some minor stomach cramps, but it's progresively getting more and more severe, to the point I'm doubled over and crying from the pain (it's a sharp, stabbing pain). Today was the worst I've ever felt with these, and I'm sitting here going "shouldn't some of this be getting better? It's been nearly two months, I need a break!" It hurt bad enough I screamed, and startled my neighbor next door, who came to check on me. I know with me and side effects, I feel some no matter how long it's been, but I've never had any get worse on me like this one. With midodrine, I still get the goosebumps and such, Florinef still gives me migraines everyday, and maybe I've managed those better, but I don't think I can do the mestinon anymore. I can handle the seizures I've been having, but this pain and unretractable vomiting is a deal breaker for me right now. I can't afford to lose any more fluids.

lol, may I have th same experience tomorrow when I go to the dentist for the first time in about 16 years (huge phobia of the dentist, my doctor already is sending me with Xanax to help deal with this). most people don't hear the "s" in POtS, so most expect me to be high, lol. I'm high alright... In heart rate only.

Thanks yall brought the temporary scooter home yesterday, and while it's very temperamental (kept giving error codes while loading and unloading, so a friend literally pushed the thing from the back entrance to my apartment, not an easy feat), I'm hopeful it will work. I charged it last night, and had to get up at one point to try and move it myself because the charger is really loud and it was keeping me awake. I didn't get an error code or anything, so maybe it was just low on juice. Hoping to trust myself enough with it to go down to the bank today and pay my rent and withdraw cash before physical therapy. I'm currently a bit terrified of this thing, because in my head I'm equating it to driving, and I can't do that yet. Some days I think I can, some days it's like nope! I have a fear of getting somewhere while feeling great, but then not feeling great, and I'm stuck where I'm at. Trying to work on my judgement and decision making, where if I'm too tired to go take my trash out down the hall, I shouldn't be "driving". Lots of new stuff happening in my world, no wonder I've been exhausted, lol.

My psych dude diagnosed me with depression with the origins of having to deal with a life altering condition. Hated hearing that diagnosis, on top of everything else, because all of the sudden it was like I was having to deal with yet another problem, and I didn't know how to handle more. Some days are better than others, including days where I feel up enough to get out of the house for a bit. It bothers me that I can feel fantastic (well,a a fantastic as we can sometimes), and just the action of getting dressed makes me go "nope, done." Yesterday I rolled down to church (only two blocks away), felt decent for once service that I run media for, and then ended up sick because I started crying (it was a special service remembering those who have passed away in the last year, and of course, my Mom was listed since she passed in August). That zapped my energy to the point that my friend and power of attorney kicked me out of my media booth and forced me to go lay down with my feet up. I went from feeling fantastic, to nothing, in a very short period of time. Being I was upset, I didn't want to go home, so I opted to go to lunch with my friends, and another new guy joined us, which made me anxious a bit , because he knows I have problems (he's the media director, he's seen me sick, but never passed out or in a seizure, which is a fear I have when out), but honestly, he's reeeeealy cute and the last thing I wanted to do was pee my pants in a seizure in front of him, lol. Some days I can handle the depression better than others, because maybe I'm getting used to the isolation. I'm really frustrated with my Dad thinking my illness is a joke lately, because he keeps telling me I should write this all in a book (I write I my spare every and time), and make it funny, and title it "I can't do that anymore". There's nothing funny about not being able to walk across your kitchen with a knife because you pass out so easy, and have stabbed yourself in that process before. There's nothing funny about doctors trying different medications, and them making you so sick, you end up in the hospital. Nothing funny about finding videos of you bike racing (yep, did that before all this hit), and realizing you will never get on a normal bike again, or the videos of you hiking and rock climbing, knowing that is just out of your reach. Nothing funny about realizing your "friends" left you because you weren't the same Becia physically, and so you're just non existent. I can kinda joke about some things now, but even then, they are barbs at myself and in the end, it hurts sometime. I can't tell you how to make yourself happy. I know for me, I have my fish right now (home didn't seem like home until I had them here), I find a good book every now and then, I have a phone with unlimited minutes and texts for contacting friends and my therapist. I try to get busy with activities, like helping out with the media at church, and the youth group (I direct the sign language team there), but sometimes my energy level wanes at that. But they know I do the best I can do, and if I'm having to do it different than I used to, most accommodate that. I'm planning a trip to Dayton this weekend to see my niece in the marching band for her state finals, so I'm focusing on that. It will wear me out in the end, but it will be worth it to see her accomplish something amazing. I heard a phrase on a movie once of "Chin up, boobs out, it's showtime!" I often repeat that to myself when things get hard, because the show has to go on sometimes. It bites the big one sometimes, but I can't stop living. Made a bet with a friend to live a few months ago, and I never back down from a challenge. So, for me right now, I gotta chin up, boobs out its showtime to get going with my day,

Honestly, we have discovered me taking in massive amounts of sodium orally, leads to me throwing up and having more stomach issues. I find things I do like, such as edamame, some pickles, sometimes chips, and try to eat those as I can, but I gotta be careful, or I'm sicker than I was before. I'm such a sweets person, it's hard to fit salt into liking it, but every now and then I get some salted caramels, or I get the dark chocolate with sea salt flecks. I have also taken a chocolate cup cake (such as the little Debbie or hostess brand), and placed some sea salt flecks on it.

Today was a two week follow up with my gp and it went amazingly well. He is most definitely trying to keep me as independent and safe as possible, so he never balked at me needing a letter to put me in line for a wheelchair accessible apartment, and today I got the greatest news I've had in a bit... He is gonna try to get me a motorized scooter for use outside the apartment, like for running to church two blocks away, the library, grocery store down the road, etc. he agrees that my independence is key to my mental health now, and maybe this would be a good thing to at least try, it would def make it easier to get to a few things I want to do, like go to the library, church, there's a place with some classes/social groups right down the block. I went Monday, and didn't realize how hard it would be to get back home, it made me extremely sick and triggered doing so, and it wasn't that far. Even better, my church is awesome, because one of the ministers was visiting one of our home bound members, and she is selling her Jazzy scooter as her place is too small to use it, and when she does go out, she requires more assistance, so she can't use it then either. While my claim is being processed, she is selling this one for a very good price for very good condition (we checked it out tonight, and it's spectacular, lol... Even the battery is really good, which was the main thing I was worried about), so I have a scooter I can use in the meantime, to get used to it, and know what I want mine to be like since it will be customized (doctor mentioned wanting it to recline and elevate my feet as well). Bad news is I still need fluids every other day, so we are continuing that process. It's not really a bad thing, I just kinda hoped to reduce my intake that way, but on the days we've done trials of trying to maintain everything orally, I struggle a lot, and while my PICC line is a bit temperamental but functional, he wants me to get all the fluids I can that way, because it makes such a difference to my living abilities. He also is working with me on pain management, as my hips are still extremely sensitive and the wrong move makes them dislocate. I hated asking for something stronger than just maxing out on Tylenol, but it's nice to know I have something on hand if it gets too uncontrollable, instead of having to get a ride to the ER for something that's pretty common with me now. Slowly getting adjusted and settled here. I do love my new place, and I've already used the alarms for help. Being so close in living area to my friends, church and the such has already eased my mind a lot. Already got a lot of old me hitting on me in the lobby, but I'm close to everything I need, lol. Never a dull moment around here.

I'm curious too, seeing as my PICC line has decided to get a bit temperamental as of late. It would be nice to have this as a back up method, seeing as today my doc extended my every other day schedule for another month.

And for being located in downtime, so far not really noisy, the police siren earlier kinda unnerved me (only three blocks from that), but that is all. Even the lights aren't bad in the windows, although I will be getting new curtains soon.

Well, if I could stand, I'd be dancing a jig. If I could just sit up, I'd do a little chair dancing even.... But I am so exhausted. But I am pretty much moved to my new place! It happened way faster than I expected, but today, when I got my keys and did my inspection, I went ahead and moved a few boxes of things that I wasn't using, and one thing led to another, we ended up with another truck, two friends to help me and my father... We moved my furniture (couch, bed, table and chairs, and rocking chair), my fish tank (my babies were not happy with me, lol), and my Kitchenaid mixer (we were so not leaving that out in the open for theft, I paid too much for it). We moved all but a few boxes from the bathroom, and my kitchen. I grabbed a banana, a box of Twinkies and a couple bottles of water to tide me over for breakfast tomorrow. I have therapy tomorrow, but hoping to get the rest if that packed up, at least moved if not put up, and my keys turned over. This apartment is absolutely amazing. I have an amazing view of downtown, and these huge windows. Need to get the correct curtains now, but I'm just floored. The bathroom is not wheelchair ready at all, but it's tiny enough, and I can get my chair into the doorway, that there is very little space where I am not near something to grab and sit. There are wctually emergency call buttons in the bedroom and the bathroom, that if there is an issue and I need assistance, pull the cord, and they are notified out in the hall and office, and they can get help to me. That is such a big relief, although I will still be purchasing a med alert system, as well as getting a motorized scooter. There's a gorgeous courtyard to enjoy outside, and there's even a resident groundhog! Apparently it Iikes apples, and will eat from your hand, Also, a TV room to enjoy a change of scenery, and they have events for the residents to enjoy too. This is like the nursing home, but much more independent too. I feel home, although I am so triggered and exhausted right now. My pain is extremely high as I dislocated my hip earlier getting in and out of the truck, and from overuse pulling myself. I managed to get to bed safely, and am enjoying a movie on my computer until I get everything else set up. Gonna be spending a good amount of time with my feet up, an IV running, and banana... But I feel Ike I can relax now, I feel truly home. I feel safer. That all said, I don't want to move in a POTS flare again, lol. I think I'm good now, lol.

Careful with the mestinon, as one who has seizures also, it's contradicted in us. I'm still trying to give it a chance though, because something has to be better than nothing. Travel safe!!

In my TST, I started getting cold, amazingly. My body just couldn't figure out what it was to do, and at one point, I told the tech "I feel like I'm freezing". Strange thing, the body and temperature. Right now I cannot warm up, and am about to climb into bed for a bit to warm up. I would take a shower if I had enough strength, but right now, from throwing up most of the day, I can barely stand to get in my chair.

Slowly but surely. im just ready to get it over with and be settled. I feel like when they moved my fish over, that was a big moment for me and kinda signaled that I am home. Ready to have that moment again now. I still am in the process of procuring a med alert device. I think I have which one I want, but just need to come up with the funds. Keep thinking and praying my disability comes around at some point, but I'm still a year away according to the lawyer. Just trying to patiently wait, and not end up sick or hurt. Been a hard couple days with everything going on, but trying to slow down and just go "I got this".

So I've been home at my apartment for going on two weeks now. While I've still struggled with issues with this flare, I've done my best to move forward, figure out things I can/cannot do, and just go from there. This week, the physical and occupational therapists came out and did their evaluations, and started my treatment here. My orthopod has diagnosed my hips at the current time while we are doing genetic testing, as possible EDS and hip dysplasia. The physical therapist who did my evaluation is awesome!!! For once, I have a therapist not trying to put me in harms way by forcing me to stand longer than I can tolerate without hitting the ground, and he's familiar with POTS because his daughter has this diagnosis too! We talked about the difference in our cases, and today he came back and we started working in a regimen for me. I'm having a horrible day today, bad enough I needed two liters via IV this am to be able to sit up halfway straight. He could tell this wasn't a good day, and watching my bp go through its roller coaster high then dropping, it was confirmed. he knew I spent a good portion of last night on the floor, and didn't push me like the others have, who truly saw what my joints and body were doing in reaction to everything, and hasn't downed me and called me lazy or thinks I'm not trying hard enough. He didn't even get phased when I had an out while he was here, which is rare (people usually freak). This dude is awesome,just plain and simple. The occupational therapist was just as cool. My arms are fairly strong because I use them to push myself in my chair (alternating using my legs and arms kinda makes me feel like I'm working out again), but my hand strength is not that great, which was a bit worrisome. I didn't know if I would qualify for their assistance, but I did, for energy conservation education, and assistive device help. As much as it hurt for me to hear it, she (as well as many others in my life) thinks an electric scooter or chair of some sort will be needed, sooner rather than later, so I get to start that activity soon. And lastly, I found out yesterday an apartment opened up at the building I truly wanted to be at! While it's not handicapped accessible, it may work, and if I need an accessible one at a later time, I should be able to transfer apts to one that is. This apt puts me down the block from a store, across the street from a pharmacy, two blocks from my church and three blocks from the library, and less than a block from an amazing ice cream shop (because sometimes I need raspberry chip in a sugar cone, or I'm just not a happy person, lol). I'm smack dab in the middle of a sleepy downtown of a small town, in a building of disabled people and people who are 62 and older. Sounds crazy, but im so excited about this. I haven't completely unpacked, so moving will be easy once we just load up the furniture. The fates are just lining up in a row, for once since my diagnosis. Even my wheelchair situation is improving: the one they send me has already broke, they are replacing it with a different brand, and even making it the smaller size I've wanted for comfort, and will ensure that I can get in the doorways of the new apartment. So while this experiment has been very hard, and I'm still mentally struggling with finding that fine line we all tiptoe on, I feel like I'm getting outfitted better for it. Just trying to keep plugging, stay off the floor, keep my joints in place, and not go stir crazy being in the house all the time.

Can't answer for the subQ stuff, but I have a PICC and do 1 liter every other day. I know I get the most benefit from running it slow, about 8-10 hours (although depending on when I do start it, sometimes I will run for 13 hours, or I can speed it to 4 hrs). Running slow for me gives my body a chance to absorb the hydration better and its effects stay with me, rather than peeing them all out an hour later because its ran straight to my kidneys. I also have major issues taking in all the sodium we require, so for me this is another way of getting that in me. i guess its all in your body's absorption rate and such. I never knew mine was so different via oral liquds to intravenous until I was in the hospital one time needing major hydration, and comparing how that went to how I manage at home. Night and day.

Yeah, the sweat test was something else. Especially those cute paper bikinis, lol. My doctor suspects I'm hypovolemic by looking at my bp numbers. The closer the numbers are together, it apparently can be a sign of it. I always feel better after a few liters of fluid, and I maintain better when I'm doing about three liter IVs a week, if not more. I should have done one today, but I am way too sick to sit up anymore today to start it safely, so I'm holding out for the morning, and running today's and Fridays together (had too many appointments to run during the day to get it in me, and right now I'm sick as a dog from everything that I need to be in bed asap...already passed out once, extremely symptomatic).

Today I was evaluated for in home physical therapy, and had a great dude doing so... His daughter has POTS, and has seen Dr Grubb! For once, I wasn't crazy and someone totally understood how my body works. He even highly disagreed with how my previous therapies have gone down, same as I did. "You don't have to stand to do things, but you do have to be conscious!" Given how extreme my hypermobility is, he said it may not be exactly safe for me to be walking right now anyways, since none of my joints seem to be in place, and after having me stand to show his I'm transferring to bed, he watched and winced as I moved. Its common to me, being this flexible all my life, buf apparently its not good. We are working on a program to strengthen my core and hip girdle muscles as best we can, because just moving my legs up in bed, he saw first hand my hip go out. What scared him more was that I could put it back in without help. Yep, everything just way too loose. and good news on apartment front... I had been hoping to get into a different complex, one closer to friends who help me, church, store and the such... Found out I am next in line! Don't know if handicapped accessible will be what's avalible, but its one usually reserved for older adults who use scooters and such, and I'm hoping the doorways are wide enough for my chair in the normal apartments. Will see when my time comes up at least. I'm tempted to say yes and just crawl around if I have to. Just being able to step out for a gallon of milk on my own means a lot to my desire for freedom and independence. And will be only two blocks from church as well, so I can go back to working media and praise band stuff as my body lets me. For my mental health, even though moving is stressful, I think this will be the best thing. Closer to those who can help me if need be too. trying to avoid unpacking too much, but did get my fish tank moved yesterday, and that has helped me so much. I had missed my fish, they are my therapy when stresses and triggered, they are my babies. After me and my friend managed to re setup tank, they are happy in their environment too. One was trying to bite and then hide yesterday, lol. I'd missed nibbles even, lol. once my new wheelchair gets here (one that I don't have to reassemble three times a day like the one I got last week) I might be set for awhile. Rough few days physically, with the stomach flu on top, but I might be on the mend. I guess I will see what the next few days hold.

Yes, my bed is a major warm spot for me. I actually went and curled back under the covers earlier, and ended up falling asleep. A friend brought some stuff over, nearly gave me a heart attack knocking on the door and luring me from my slumber, lol. I almost wish I has put the bed in the living room.

Ohio seems to be going through a early cold streak, and I have literaly been chilled to my bones. I've had a couple days where the termperature in my place has been above 70, but most of the time, I'm laying on the couch with a blanket or two, or even just retreating to my bedroom early to warm up in bed with a few pillows laid on top of me. I'm afraid of turning on the heat for the season, because watch it go back to the 70's and 80's when I do.

Oo, hadn't seen that one! A bit more upfront, but per month, and not having to pay for a land line, that might work well. I will def look into this one.

My toilet triggers me, lol. Flushing that thing sounds like a jet engine going off, and the first time I used it, I screamed and jumped a mile high from my wheelchair. Such a small town that no online supermarketing, but luckily if I can get a ride, there are two tiny stores here that I can pick up things from. Prices are a bit higher, but for little things, they are handy. I do want my meds to be mailed to me, because the pharmacy here doesn't keep stock of the more obscure ones, like mestinon and midodrine. Aside from the lights bothering me a bit, and how I cannot control my temperature very well in here (I've been freezing, it's a tile floor, and Ohio is apparently hitting fall and winter early, it's chilly outside, and we are not very well insulated here either), it's coming along. Found out unless I get a land line phone, I cannot use the med alert system. Can't afford it at the moment either really, but there are charity groups that might help with cost, but I can't afford landline phone at the moment. It's not much, but it's home for now. Still can't wait to get to the other apartment complex, where if I needed milk, it's right down the block, and there's an ice cream shop across the street. It's hard to be frustrated when having ice cream, especially may favorite raspberry chocolate chip.

I'm in love with the recumbent cross trainer we had at the rehab. Safely sitting, walking and using my arms. I loved it. Wishing I had room for a recumbent bike or something here, but im also supposed to do three days a week in house physical therapy here, to help strengthen my core a bit more in hopes it will help my hip joints.

I did outpatient pt for about six weeks beginning of the summer, and what I really got out of it was endurance. It didnt help my standing time, and my bp and hr still had a hey day. I did five days a week pt in the rehab and once again, just rebuilt my endurance from this severe crash I've been fighting. It was in the middle of this thanks to the orthopedist I am seeing for issues with my hips and joints that we are thinking theres more than meets the eye with me and my case, but as a formers athlete, even though it all exhausted me, it felt like I was doing something worthwhile, like the old days. I missed being that active, and while it was tough, I can see where it's helped my strength with something's, and just made my mind feel better.

I have to say at the life alert system, I laughed... The doctor made the point of "you can't just lay there on the floor, you've fallen and you can't get up!" I couldn't help myself, I nearly spit water imagining the senario of me pushing this button and having to explain that I'm really fine, just can't get upright because I'm POTSy... Sure will have some blank stares.

Got told today to get a Life Alert system since I'm alone, in case my phone isn't near me when I have an issue. I've had a few in the short time I've been here, no doubt from just being exhausted the day after I've moved everything in and didn't rest enough. Trying to pace myself is insane, And lol, at the floor comment... We could just moan and speak POTSy-ese. And this bed totally rocks. I've never had a pillowtop before, I can't believe this is what I was missing. Even though I'm not at the angle I'm accustomed to sleeping at, the support is amazing.

We discovered I cry for about four hours straight when I take a Xanax. It's supposed to relax me, well it did to the point of tears. Also realizing how much around me triggers me, no doubt from being extra sensitive. The toilet flushes and startles me, the shower head emitted this horrible high pitch scream, the floors are painfully cold to my sensitive feet, there's too much light with the white walls... But trying to brace myself for the triggers and such. Having first night jitters, just talked to a friend for about two hours to relax, moved the computer into bedroom and watching movies while making my grocery list. This bed is so super comfy, like a big hug, lol... I could use a hug right now.