Becia

So, I've been busy lately. Had major surgery last Thursday (2/26) to extract 27 teeth, to start off with. This was done at the request of my cardiologists, and the dentists i used saw no way of restoring them, so out they went. While dramatic and majorly life changing, it had to be done really, for my health. I saw the infections, had a very active abcess going into it, and they were falling apart. Being the POTSy and EDSer I am, my recovery has been the pace of a turtle stuck in molasses, but it's getting there. And a bonus, according to one of the dental crew, I'm gonna have a nice smile when I get my teeth, which is something I've never had before. All dental work I've had done, I've felt, because I don't numb well at all. Well, this time, they admitted me to the hospital to do it, under general, to make sure I didnt. I've been in bed pretty much every since. While laying, my heart has been hovering 130 or so. Moment I get going upward, we are climbing ever so high... One time I remember seeing 179 on my monitor, then out I go. I've currently got no standing tolerance, just a sitting one of 3 minutes, and thats with feet up. Oh joy! On top of the physical stresses of surgery and medications, I also have a horrible infection, and the medication I'm on for that, I'm allergic. So double whammy there... One thing that has been a lifesaver in all of this, is my PICC line. My every other day liter of fluids has saved my stomach for food, since it doesn't empty right (testing for that to happen on the 19th), helped push the bad stuff outta me, and kept me coherent, rather than a passed out syncope mess. Home health has even come out and started my ivs for me since Saturday, which has been a big help. Well...PICC line came out of me today. My mouth has been swollen, so I've been icing it a lot, and I take an ice pack to bed with me. I thought I was strong enough to go do it myself tonight, to secure that, my ice water, and a pudding cup for taking meds in middle of night (take with foods, lessens nausea). I tell my friends thwt I'm with "I'm okay, go ahead to bed". Guess I wasn't ok. Felt syncope coming, grabbed a chair so I could kick feet up and lean on until it passes, and I guess somehow I snagged my line. Now, lately, the dressings for it have changed,and they aren't that good, and I had to patch this one to make sure it was closed over right... Guess it came off, because when I came too, I began getting my bearings and noticed extra purple line showing. Thought maybe my extension had come undone...nope, the entire line had. Panicked, applied pressure, screamed for my friends, and we all started calling. Ended up going to ER for X-ray to make sure the entire line came out (which they still aren't sure, lovely), dress my hole, and now gotta call doc and PICC team in the morning. And it's a treatment day too! Oh my gosh, I'm just beside myself. Friend picks me up, we slide home through all the snow and ice we got (and technically we could have been arrested for being out, but I begged a police officer to not do so, he was cool with it), he can't get his car into gear to get into the garage, so he grabbed an extra wheelchair we had, wheels me over to the house entrance where mine was, hauls me up to mine (stairs are a no don't think so with the body right now), and he's running through the house to make sure I get to bed before I pass out again... Only for me to throw myself to my bed and my hip comes out of place. If I had teeth, I'm sure I would have bit my lip. So, Im symptomatic, need medications, dislocated, toothless, and PICC less... I'm cursing myself up a storm, and my friends the darling he is, brings me a bag of ice for my mouth, and a pudding cup. I guess when all else fails, there's always pudding. And it's banana cream, good stuff. Hips just gonna stay out of place, I gotta call doctors tomorrow and see about how to go about another PICC. Not looking to how much that hurts again, but the fluids do so much good for me, I hate to go too long without. So...how yall?

Mylan I couldn't swallow, and it never felt as strong as the previous kind I could take. I've been getting partials of my kind now that I get from cvs (not sure what brand, it's the tiny blue pill one), but I usually do have enough to make it. I also have a bottle of 5mg that I have as an emergency (last bit of an old script, I had it filled three days before they switched back to 10mg), so I have a bit of a "stash" just I case of a more prolonged issue getting my main script filled. I'm really nervous if I have to go back on Mylan, not just because it doesn't work as well (my opinion), but because of the swallow issues. I tried even cutting it before, and it just fell apart, so I ruined several pills before I gave up. I'd prefer to not have it stuck in my throat

On my old iPad, I had a video for people to watch that explained my conditions, gave my doctors information and who to contact. I really need to make a new one to place on the new iPad, with updated information, now that I think my condition is fairly stable. I keep a card in my wallet that has allergies, meds, my POA information. I usually have a few salty snacks in my med pouch, a bottle of water is always in my purse, and I also have a bag with my picc line information and extra flushes, alcohol, face mask in it. I need to get a medical alert bracelet, but haven't been able to afford it yet, or figure out how to word things on it.

I love f.lux. I have it on my laptop, and at night, it helps a lot. Lately I've noticed lights bothering me a lot more, but I know my body is in a bit of a flare, so lots of things are bothering me more. I cannot tolerate the lighting in stores and doctors offices, and what does my apartment have in it? The same fluorescent lighting they use. I've finally got enough lamps I can light my living room to avoid it. And sweet laptop to win! I'm totally jealous, yet, I'm like attached to my iPad so much it's never far away, and it's not much smaller, lol.

Allergic to them, or I would.

I just shake the salt shaker over my water and lemon, and drink like that. I have no clue how much I'm getting from it, but it's there. I also get IV saline every other day, so that helps that intake. I'm on potassium supplements, but hoping I can either get that switched to a different brand or maintain with bananas, etc.. The pills I currently take are very hard for me to swallow and burn when they come up.

This had me laughing. I can just imagine the look on your face with it.

I've made my own by water, strawberries, lemons, salt. I am horribly allergic to artificial sweetners, so nuuns are out for me too. Sometimes I can tolerate the coconut water. I'm at the point I can tolerate salted water with a squeeze of lemon juice. Sorry, I'm not any help at all.

You made me smile here Sarah. Thank you ((hugs))

Lol, a bunch of my friends were just talking to me about this! They are very big scuba divers, and we're trying to figure out a way I might be able to try this. Dave seems to think that once I'm in the water, it won't matter how I'm positioned (feet down, sideways, etc) because the water and my body will correspond somehow and my body won't be able to tell that I'm "standing" really. I'm terrified to try it, but he's going to ask their dive guides in the next big outing their thoughts. I do have a paralyzed friend who does assisted scuba. He has a dive master that basically holds up by the tank to keep him in the position needed to move forward. It's a beautiful thing. I love fish, and every dive trip they do photos and pictures, I get more and more jealous. I worry about my body going into some crazy overdrive, and then passing out. Maybe when I'm better regulated.

I'm afraid with how sensitive my skin is, I couldn't tolerate another tattoo. When I got my current two, it just felt like scratching, but after totally melting apart during my QSART, I'm not sure I could tolerate it. Little things send my body into overdrive now.

My very first tattoo was my right shoulder, it's a pink ribbon with the word "life" underneath it. I got it out of my passion for fundraising for breast cancer research, and something one of my patients said to me when I worked in the hospital. She said one time after I finsihed drawing her blood, that she just had to embrace her battle and that this was her life now. That struck me so odd, but I loved it. It's the same with us in a sense that being potsy's is our life in a lot of ways. I've fought against this label for a long time, but am now just going "it's part of me." It's not the only thing that defines me, not by a long shot, but it is indeed part of me, and I embrace it for my life. I've thought about getting a tattoo to symbolize how my life is now. I have another one on my opposite shoulder that is in memory of my brother (guitar with butterfly, his name underneath), and then my little ribbon one, so I'm not sure where I would put this one, but I've thought of designs based off of a spoon with a dysautonomia teal ribbon around it, with the words "bend, don't break" somehow around it, because that's a phrase used a lot with me, and not just from my EDS standpoint. I've bent my life around my conditions but they haven't totally broken me yet. It's my little catchphrase to keep going. So I can't do something like I used to, I have to bend my will a little bit, but I don't have to break from my passions.

Me too. Now my mental health therapist will probably think I'm insane today, lol.

Accept the tools given to help you be happy and safe, whether the wheelchair, the ramp into the house, the transport driver, or the PICC line that keeps you from nightmare ER visits. Be kind to yourself and don't accept mediocre care. You deserve treatment just like anyone else. Ask for help.

Don't know about it being back ordered, but everytime the last four months I tried to fill my monthly script, I only get a partial, and have to come back the following week to get the rest. since I have to have one particular manufacturer because if my swallow issues, Im curious.

I hadn't heard of that one, but will look it up thanks for the info!

Yeah, I'm finding im allergic to a lot of inactive ingredients in medication. There's one in Zofran ODT that sets my headaches something fierce. I'm also allergic to an ingredient in this mouthwash I was using for a week once. Major migraine starter. I'm having surgery coming up in 26 days (it's a big deal it me, so yeah, I'm keeping track of the days, lol), and all I can think of is I'm gonna be throwing up my toenails...might as well make my bed next to the toilet...praying they can control that, as well as my pain, but really, control the pyrotechnics of the gastric type.

I'm allergic to the ODT form of Zofran.

Never heard of the Tigan. I have issues with compazine and reglan causing my heart rate to skyrocket, don't know if I've ever had a seizure with them. They gave me compazine one time in er and didn't believe me when I said there was something wrong... Guy could barely hear my heart, it was speeding. I think it was 190s when they finally put a monitor on me. This was way before POTS diagnosis, I had a migraine and needed IV meds for. I was probably 14-15... Never again. I love IV zofran, just wish my doctors would let me do that at home through my PICC when it gets to the point I can't get the four plus pills for nausea Im taking a day down me (home health says I'm ideal for doing this, instead of risking ER each time, as I'm still constantly throwing up). I see a gi doctor on the 12th, hoping to get some answers and relief.

it depends on if I'm on solid foods, semi solid, bland, not bland, doctors appointments, or home all week. My usuals are some sort of fruit (sometimes don't know what until I see what's on sale and speaks to me essentially), cheese (I love cheese), sometimes some meat of sorts, pasta, soup and... Pickles. Oh my word, the pickles. I have come out of the store with four types of pickles sometimes. Once a month I buy a case of bottled water, and a couple packs of Gatorade for sodium help and for carrying with me. I'm currently craving potato soup. Guess I need to go and make it, but currently just too tired.

65% of my apartment building has the flu right now, and given its of the older population, most of them are shocked they have it, because cvs came through and gave out flu shots here in the building to protect us. I didn't take one because I end up severely sick each time I have, and with my weakened system, I'm lysoling everything and everyone. I've had a cough the past few days, nothing too bad, just dry air I think, but this morning my throat was sore. Home health comes out today, here's hoping she doesn't call the ambulance herself at this point. I feel worn out, but I also had a very busy day yesterday with appointments and being out.

that there are still good people out there, that do not think I'm just begging for handouts or help. That believe my conditions and have seen how they have changed me, and know when I need help before I ask for it. These people help me in so many different ways, and it's without desire for repayment (although I try to do things for them as I can, such as baking bread or sweets, or knitting and crocheting)... I was afraid people would only remember the pre-illness me and leave. Some did, but there have been a few that have stuck with me, and for that, I'm grateful. They are my family when my family left.

I did, and where I was sitting when I moved to the quiet areas, they had it playing on the TV on there, so I still got to see some of it, in a protected environment. Had a couple friends sit with me for a bit too, especially when the last band had their pyro going off (it was Skillet for the closer, a good band, but a very loud band). The pyro pops sent my body into one of its tense moments, where I'm seized up, aware, but can't move, like my body is just having a hissy fit. Thankful the POA was there, he made sure the people around me didn't freak, and got me calmed back down.He also pushed me across the way back to the bus, because I could hardly sit up in my chair (another thing I'm noticing lately, I lack strength to sit up for long, my body is so loose right now that I seemingly fall over, or can't hold my head up, so I look like a weird question mark after sitting too long). We couldn't get the bus started, the battery was dead, so there was some drama getting in (wheelchair, needed to use the lift on the bus, it since they couldn't work that manually, I crawled up the stairs and they helped me to my seat), but once we got it all done, it was good. Laughed all the way home.

Don't know what you can handle until you try, right? I sat through 2-1/2 bands of a 10 band concert. Passed out. Twisted my knee trying to not come out of my wheelchair (one of the youth kids was helping me, and we hit a hole neither of us could see in a puddle of water, and I nearly landed on the sidewalk). Passed out. Currently struggling with a heart rate of 170 sitting. But I tried it. I love hanging with the youth kids from church, and how I can be a support for them, even like this. My POA is with us, and noticed I had some of my seizure mannerisms, so they have been checking on me to make sure I'm alright. But I tried.

Used to use bentyl, but allergic to tramadol. Will be looking into snri for treatment.