Becia

Oh yeah, compazine and reglan both set me off something fierce! Seizure and tachycardia out the windows, lol. They are both on my "give this to me, and you will seriously regret it" list. I use phennergan and zofran medication wise, and peppermint oil and tea herbally to help. Sometimes it works, sometimes not. I might look into the emetrol. 4th was a bit crazy with an er visit for spraining/dislocating my right hip, headache and just being tired, but I got to have a bubble bath, which was awesome. Of course, I was so crashed from it, it took about 3 hours to crawl back through the basement back up the stairs to my wheelchair, but luxurious bubbles of spearmint and eucalyptus made it worth it. Nope, no fried dough, I fact, I didn't eat much at all at the park (kinda wanted Graeters ice cream, but was so afraid to overload my stomach, that I held off). Next time though, the fair is coming up, and I'm craving funnel cake, lol.

I don't have any moons... hum...

My body has yet to crave it really... Well, I take that back. Fast food is rather high in sodium, and every now and then, I crave Taco Bell or a sandwich at Arby's. They make me sicker than a dog, but every now and then, i just gotta have some tacos, lol.

I hadn't thought of that Katie, but that does give me an idea to try. I've started to add a couple sprinkles of salt to my ice water if I have lemon with it, trying little bits here and there, but I can't even handle much of any salt lately. I def wanna get some gavascon now to try. I think I'm getting a smidge of sodium in my Iv stuff, but I def could probably use a bit more.

I can't even tolerate Gatorade. I can handle a few bites if pickles, a couple olives, but even the it's iffy.

I unfortunately was in the ER the night our town set them off down the road at the high school. They kinda had fun watching my hr go from 70's or so to 150 every boom. I was so glad to hear the finale go off, so I could finally relax and calm down a bit. I love fireworks personally, and I think if I was watching them, and could see when they were being shot off, I could better prepare/handle myself during them, but not knowing what was going on, but hearing the booms did me in.

Anyone else deal with their body just NOT wanting to take in sodium like we should? Like, when I try to eat something that is high in sodium, I end up so extremely ill to my stomach, and I literally think that is one of the reasons I've been vomiting so much for the past few months. I grew up not eating salt or sodium at all, and now I am to try and take in 3,000 to 5,000 mgs a day? Its like overload. Even when I eat something like a bag of plain chips (not even salt and vinegar), I end up nauseated and throwing up. I've tried Thermatabs and ended up just as ill. Its not a flavor thing (well, in a way it is, because I don't like salty things, but I eat pickles and such because I know I have to for the sodium), so I'm not sure what it is, other than my stomach just doesn't do sodium. Anyone else like this? What have you done to overcome it, or at least deal with it better? I take zofran a couple times a day sometimes, and usually a phenergan every night to help with the nausea, drink peppermint tea, etc. When the vomiting gets really bad, I go to a very bland diet (bananas, rice, applesauce, sometimes toast...but I've been making very dry waffles, and those have been awesome... i make a mean waffle.). Ideas? Thoughts?

Nope, no long term epilepsy treatment either. I've had a couple this week, one that had me apparently fall and I ended up with a sprained hip again (except being the hip that normally does this, it was the opposite side). From what I get from everyone, they think its the Tramadol they prescribe for pain control for major issues, giving me more seizures than anything. Anytime I'm on it for a week or so, they really pick up a lot. If I can keep my migraines and such down, and not have to rely on it, they aren't that bad. More like the focal seizures, where you're kinda just out of it, instead of the bad grand mal's I've had lately. Of course, the more stressed my body gets with flares or triggers, and the grand mal's pick up, but lately I've done fairly well with keeping them down. I still think the triptans make my pain worse. I can kinda deal with the cardio issues I have with the imitrex shots, but if I have those and increased pain, I have increased issues. I had a blast at the theme park. I did manage to ride two coasters, very mild ones compared to what I truly wanted to go on, but after passing out on the second (it was more movement than the first was), I called it quits, and window shopped, kicked my feet up while the kids swam at the water park, and talked with friends. The extra hydration therapy i've been doing with my picc here at home has been a godsend... its really helped in my crashes and such lately, I'm very glad I have it, and I hope I get to continue it for a bit. Doing the therapy at home has given my body a chance to try and eat and equalize a bit, which has been good. Its kept me a bit perkier than usual, and has made the current crash I'm in a lot easier to manage.

Update: We went on the 26th, and you know what, for an absolutely exhausting day, I had a great time. It wasn't too hot or humid, even though I did get a tad bit of sun (but didn't burn, yay!). I had my IV therapy the night before, packed a bag of salt, True Lemon packets to flavor water, and my own water container, as well as some snacks, dressed relatively cool, and put the feet back on my wheelchair (I usually don't have them so I can use my feet to propel myself, working my legs). , I'm a total adrenaline junkie, although my body no longer lets myself handle it, but I had a talk with my psychologist before I went, and he made the suggestion of "just go and try it, you don't know what your body will truly do until you put it in those moments. From those moments, you learn." I had a special pass that would allow me to ride the rides, just allow me to access them from a different location, take people with me to assist, gave me a time to report, so I wasn't waiting in line with a bunch of people, etc. There is one coaster there called "Adventure Express" which is not a twirly one, more like side to side, a little up and down, through a forest-like area. One of my housemates was with me, and she rode next to me, helping me sit up and even held my head because it wasn't an over the shoulder mechanism, but just a lapbar deal. She was worried if I did pass out, I would hurt myself, and since it was slightly jerky, she grabbed me to help keep me upright, so I didn't hurt myself. I didn't pass out, was triggered yes, but had a good time. I waited for a bit before we found another that someone suggested might be safe to me to try. That one i don't remember, I passed out on it, but was coming to when we stopped. That was the end of my fun, but hey, I at least did try, and now I know, lol. They weren't crazy rides like the ones I wanted to go on (like the one with the huge drop that you go 80-mph on, that was my favorite last time), but they were away from my wheelchair I kicked my feet out of my sneakers and propped them up at the water park (couldn't swim because of my PICC line at the moment), and enjoyed the shade. From there, we left the park, and while I was able to enter and leave the bus on my own feet before, I had to use the wheelchair lift for the remainder of the trip. The kids were awesome too... at one point they were fighting on who was gonna push me, because the park had a lot more hills than I remembered, so any help was gladly accepted. We stopped at Chipotle, which is a burrito place, on the way back, and I was so afraid I wasn't gonna be able to eat, because lately that's something I'm really struggling with, but I ate, and it was actually good. The food tasted great, which is something rare with me lately. Friday after was rough, Saturday I thought I had kinda gotten better, but Sunday I fell ill with a horrible migraine at church, which I've been nursing all week. Monday my housemate found me passed out in the bathroom, suspecting I had a seizure because she couldn't get me to wake up for a few hours, which is common with them. Looks like the extra hydration did me good, and delayed my crash that I knew was gonna happen, but they extra treatments have helped me bounce back a bit better than I would have otherwise without. Have had a few more seizures, but we think they are more related to the fact I was taking a pain pill that has that side effect. Last one was Thursday night, and that one ended me up at the ER because I somehow twisted my injured hip and my leg went numb. That has sense resolved somewhat, and I've gotten my hip back into place, and gotten a medication that doesn't cause seizures (yay!). I'm so glad I went. I wanna go back. I kept repeating to myself through all the troubles I've had, that day of fun, away from doctors and appointments, in the fresh air, was worth it. It was, I had a blast.

I'm more afraid to be around people if I have any triggers that leave me susceptible to symptoms or problems. I used to be very active, now my whole world has turned upside down, and I'm afraid being around certain people in certain situations. It's embarrassing to pass out in public still for me, even when those who understand around me and can vouch that I'm okay, just need some time to recoupe. It's painful when they call the ambulance for me because I'm that far "gone" that I need the er or the hospital to get my body back under control. For a person who worked 40 hours plus a week, was active in physical activities and social outings, being regulated to doctors appointments for the most part, really really hurts. Every time I try to pick up going to another outing in the week, sometimes it works, and sometimes it sets a flare off so bad that I have to give up. I do make myself go to church once a week, where I sit in the youth room above the auditorium for most of the time, feet up and laying on the couch. Only doing that do I seem to make it through that day, get to have lunch with my friends, and get to the grocery store, but sometimes even that's not enough.

I'm in the same boat... Currently waiting on a hearing, which can take over a year according to my lawyer. I'm blessed that I right now, get food stamps and Medicaid, but for basic needs like deodorant, shampoo, the occasional "The Big Bang Theory" DVD set (because I need laughter and something to occupy my time, and I can sit there and watch these over and over), it's been a struggle. I pay a series of bills online for dad who's never figured out how to do it, so if the bill is $86, he will give me $100. He's been paying my phone bill which is only $50 a month because I told him if he wanted to communicate with me, this would be the way (I live with friends, and while they have a home phone, she works from home and has business calls during the day on that line, if he wanted anytime communication with me, a cell would be needed). I've learned to do without a lot, and to cut majorly down on stuff, but I'm blessed that on the times I need ensures, and don't have money for them, my friends pay for them. We go out to lunch every Sunday with a another couple of friends, and lately, I've been given my card back, and they've covered my lunch. I'm a girl who's struggled for everything she's ever owned or done, and to have friends just give and help me, is new. It makes me feel horrible sometimes because I can't do anything for them in return, and they don't want anything in return (we've had this argument a lot lately). It's new territory for me. Ohio has a state disability thing as well, that I've applied for. It's different from the federal ssi, and they would provide $100 a month for things like bills, needs, etc. been waiting on that for about a year, hoping to hear something soon on it, but that would certainly help me until hopefully my disability gets approved. Thank goodness for it being retroactive to when I first filed, that bulk amount would certainly be very helpful at the moment, but right now, the waiting is the hardest.

Yeah, driving to CC earlier this year, I was going "yeah, glad I just chose to get up early and drive it instead of stay..." It was pricy for what I could find, and when I got there, I was going "wow" at the scenery. One side is kinda rough, but the other side is right in college territory, and lots of museums and pretty parks.

Nope, CC didn't do much with me at all really. I obviously wasn't fine, because it's still been a long crazy struggle since, and all my tests came back with "yeah, she's got issues." I've had one neuro tell me they aren't, but my current neuro thinks they may be to an extent. I hadn't heard of migralepsy, but might look into it as well, because these never ending migraines are for the birds, and everything they put me on, makes them worse. They keep treating the headaches with triptans, but they make mine worse. Yeah, I have a lot of anxiety about doing things around the house, outside the house, everywhere. Last week when I went to a friends house for a few hours, it was great,but all I could think was "please don't have a problem here, she's got three little kids, I can't scare them or her like that." There are very few people I trust myself being around because of the problems. I don't even like being around my real family if I have problems, because they just don't understand. My restrictions are "do what you want, within reason, knowing how your outcome may be." I've stabbed myself with knives trying to cook, I've broke glasses passing out and falling in them (that wasn't fun, little shards of glass in sensitive hands, ouch), fallen down the stairs because I was trying to do my laundry when the house was gone, hurt myself in and out of the shower, and the list can go on and on... I have a hard time realizing my limitations. I have asked a friend of mine who went to nursing school to be my personal aide at this point when I go out, because she's the only one around me other than those I live with or have seen me have one and know the routine, that will remain calm and keep them from calling 911. My friends and doctors encourage me to go out of the house as I feel, and sometimes it's okay, sometimes it's overkill. If there's people here at the house, I'm okay being here,but the past week when everyone was out on vacation and at camp, it was extremely lonely, and upsetting to me. A friend came over a few times, but it was just me and the dogs. Talk about stressed... One of the dogs has seizures too, so we were both peas and a pod... She stresses when I have them, I stress when she has them, lol. In the end, it's all gotta work out, right? Something has to give, the world has to be okay. And someday, you'll get to use that pink mixer (I'm jealous if that by the way, pink is my favorite color, I wear something pink everyday because it cheers me up). Right now, I just wanna focus on Thursday. Come on amusement park... Mama needs a change of scenery.

Seizure wise, I'm still having them, sadly. Currently depends on how triggered I am, how tired I am, how hydrated I am. It seems the worse the migraine I have, the more apt I am to having them because my body literally can't handle much more, and even when I'm downed, I have to get up and use the bathroom, and that little bit of exertion is enough for me. With the dehydration, I do have them often, and am hoping that at least getting the 3 liters a week in me helps aid in this. Currently I think it's too early to tell; I had one this evening on the way home from church. I perpetually live dehydrated at the moment, hoping the treatments help bring me up a bit. My fear is that the dehydration will never be resolved. I can barely eat most of the time, much less eat and drink 3 liters of fluids per day. I too have filed for disability, and am now in a yearlong wait to see a judge about it. There are days I feel I could work, but on the days I try to hold "office hours" in working on school stuff, or my jewelry making (I've started making jewelry again after several years of not, just to keep myself busy, and sell a few pieces here and there for some money... While I get food assistance and medical card, I don't receive cash assistance for anything else, so my hobby helps buy things like shampoo, lol), the next day or two are a disaster. I'm in a crash now, because I have three appointments a week, plus church... I just physically cannot do this anymore. And I feel you on the brain fog and confusion too... I was glad to let my lawyer handle mine, and my friends as well... I can't keep up with anything. I finally made a file on my computer that lists every hospitalization, doctor, diagnosis, med start and termination, different therapy, anything and everything, and it gets added to each time things change. I had so many visits with specialists and such that I couldn't keep up, and neither could my power of attorney (I opted to go ahead and have one, because they couldn't keep me conscious enough to answer questions in the start, and recently with my headaches, they effect my speech something horrible.), so the file came to fruition.

I can go into a flare with something as simple as getting out of the house more than expected. I've had bronchitis twice this year, and both times have sent me into a severe enough flare that I ended up in the hospital. Every sniffle I end up having sends me and the household into a tizzy, because no matter how early we start antibiotics, it can down me so easily. I'm coming out of a flare now from a couple weeks ago when I was only home one day from doctors appointments, getting my port line placed, and major sensitivity overdrive. At physical therapy, they gave me some therapy bands that are different strengths that I can use even when laying down to work on my strength and mobility. I also do simple leg lifts and the such. When it's bad, even doing those can jet my heart rate to 150 and higher, but I do my best to grin and bear it as I can, and at least stretching my legs always makes me feel a bit better.

And cooling vests... I don't have one. Where can you find one? I am planning on getting one of the cooling socks for my neck, and I have called the park and talked to first aid to see if I could stop in periodically for ice to help cool off, but if I start going every two hours or so for major cool down moments, it's kinda kinda bite.

I've wanted to go to the Columbus zoo so bad lately, lol. There are a couple rides and such that are much calmer, but one has strobe lighting which lights bother me, and the other is a water ride, which I have a line out of my arm to keep dry, lol. With kings island, wheelchaired people get assigned a time to ride the coasters if you choose, so I thought about riding one at the very end to see how it would do. I close my eyes in them, I just like the feeling of soaring, but yeah, if it's late when we leave, my hr increases as the day passes, and it would be very detrimental. One can wish though, lol. And sometimes just sitting up is hard in me. Im hoping I have enough time to save energy next week before we go (church and I'm running sound for a concert on Sunday night, physical therapy Monday, community dinner and meeting Wednesday, then trip Thursday). I do hope someone can push me a bit, but I'm trying to not be a party pooper or needy. I just gotta get some different scenery. Plus, to pass some time, I've been making jewelry, and they had a glass blowers shop there that had the most gorgeous handmade beads, plus lots of demonstrations... Hoping I can learn some tips on making my own beads, and incorporate that into my line. So far the temps are estimated to be in the 80's, but it's ohio, it'll change, lol. They have some shows and stuff that are in theaters, so if I have to go see the science show 10 times to cool off, I will, lol. Or, they can just leave me in the beer garden for a while, and I'll just have a grand old time, lol. Keep the ideas coming! Y'all are amazing!

Unfortunately it's a temporary line in my arm called a midline catheter port, but there is a possibility of actual port implantation at a later time. I did an infusion Wednesday, was able to get out of the house for a few hours yesterday to visit with a friend and her kids (2 years, and 1 year old twins, all girls, lol), and we ended up going to Goodwill. Today I have a horrible headache, and really need to be doing my infusion now, but instead have to travel an hour away to a doctor who's supposed to evaluate me for my insurance. He could say I still qualify for it and I keep it and keep the therapy, or he could say I don't anymore, and pull all of my stuff. Praying he realizes how bad this is, and I can come home and do my infusion with peace knowing it will continue. If he deems me not disabled enough for my Medicaid, it all has to go back, and the line will be pulled. But I tell you what, the slow decrease of a headache on Wednesday as I was doing my treatment, was amazing. A lot of these problems, including my speeding heart apparently, are tied to my hydration. I watched my hr slow, my headache ease up, my appetite come back. It's truly amazing.

I know when I don't feel good, pain or triggers, or sometimes just needing to sleep, I rock. A friend of mine saw me doing that and thought I was having a seizure until he realized I was awake.

My wheelchair is not motorized sadly, and I probably will be pushing myself. Depending on who's there, they may help me, and I think you can rent motorized scooters at the park, but they are first come, first serve. If we get there in time, I may consider renting one. Got a dress to wear today to help stay cool, and will get a spritz bottle. I was thinking the umbrella thing for when I'm sitting still as well. I've researched where to go, what I can do, and such, I just need to listen to my body more. Also sneaking in some extra food and such because I have such special stuff to attempt eating, lol. Great suggestions, keep them coming if anyone has anything different.

So next Thursday, I'm going with the youth group of our church as a chaperone to Kings Island here in Ohio. For those not familiar with it, its like Six Flags, its a theme park, roller coaster, fun place. Its an opportunity for me to get out of the house for something other than a doctors appointment (which for the next 6 weeks, I have three a week), get some fresh air, sunshine, etc. So far the forecast isn't showing extreme heat, only in the 80's, but its also Ohio, it can change quickly. How would you prepare for going into something like this? While I've been walking short distances (still symptomatic, but my outs have been reduced a bit), I will be using my wheelchair while here since the park is rather huge. I've scoped out places that are cool that I can escape to if it gets to be too much, which will be helpful. I also will have three more IV saline treatments under my belt before we go, and am due for one the next day and may start it that night when we return to help me bounce back. I know this is gonna be very taxing on me, but I'm looking forward to the opportunity to help with the kids again, to be out of the house for a change of scenery. I would love to think I might be able to ride a coaster or two (I'm a roller coaster junkie, love them, but with POTS, its probably not advised, lol), but being a check in person on the ground for the kids is fine with me to get out of the house for something other than a white coat visit. What would you take with you?

This forum has been pretty rad for me too. Couple things I disagree with, but I'm just a rebel, lol... the wealth of knowledge here is overwhelming in a good way. Its nice to see others in my same shoes.

So a week ago yesterday I had a midline port placed, and a week ago today, I had my first at home IV treatment. Right now they are just doing normal saline, and I'm allowed to run it in as fast or as slow as I desire. I have chosen to run it over 8-10 hours normally, and so far, have done two treatments (one last week, and one yesterday after they changed my orders from 1x a week to 3x a week, and I received my extra supplies). While having the midline port has been painful and something that has kinda freaked me out, how I feel at this moment makes me glad I pushed for this type of help. I've been able to walk a little more around the house (sometimes pushing my wheelchair to keep steady and close in case I need it), wake up a bit easier, and for the first time in several weeks (actually since my last hospitalization) I was able to get a standing BP reading on my machine here at the house. It took a few tries because my BP bottoms out severely before popping back up very slowly, but I got the reading. So far, it looks like my doctor is willing to try this for at least the summer, and then reevaluate. But I'm cautiously optimistic that doing this will help me heal in a few different areas, such as being able to work on eating solid foods and swallowing (because swallowing so much fluid to try and hydrate has been torture, because then I don't eat, or I can't swallow anything not liquid). I can regain my strength. Perhaps the medications now have a better chance of working too? I guess we shall see. Just thought I would let you know. This place has been awesome, and I'm really glad I found it when I did.

Yes, for me its like an out of body experience. It hurts so much, that my body just flips out. And I am not normally a "pain is pleasure" kind of person, but after awhile, my body is just like in overdrive.

Home health came out today, and in am currently set up for one liter a week, but the nurse is gonna call to see if they can get that bumped to twice a week. There is some sort of shortage of what the doctor prescribed, but right now it's just a usual saline drip, run how I chose to have it run (which is slow and steady). I also have nine weeks approved by my insurance at the moment too. Have already been told I will have to go back in and have this switched out to a different line. Right now I fee like a truck has run me over, I am so exhausted. I couldn't lay on my right side, so last night was sleepless. My only trouble is I keep hitting it on accident and it's very much sore, lol... I joked earlier that I need to somehow magically reduce my boobs because it's in the inside of my arm, and I keep knocking my boob against it... I thought the nurse was gonna fall over laughing.