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Becia

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Everything posted by Becia

  1. It's bad when I have smells that sometimes trigger me to help with the smells that are triggering me, lol. Kinda awkward and weird.
  2. I am, and it's killer in such a small apartment like mine. I have neighbors who smoke, and love to keep their doors open, so it comes under my door when they really get going. I've got little cups of peppermint essential oil soaked cotton balls, a wax warmer with some decent smelling cubes, and open windows to help clear the smells.
  3. Back in February I was given some pain pills I could hardly swallow, and my doctor suggested coating them in butter to help. I also do the chin down thing, but my body has this thing where it will start swallowing, and then stop, so they kinda just hang there sometimes. Butter helped.
  4. Today I went for a pretty successful visit with my general practitioner, who has been the most instrumental in managing my POTS in my team, I also found out today, homeboy is moving to Tennessee. I'm crushed, because he has been so good with me, and has been the only local doctor willing to deal with me with my conditions (pots and eds) for general stuff (like antibiotics for strep) to managing my IV hydration therapy to keep my blood volume up and constant. I hate looking for a new general doctor, but after this guy has step up to the plate in my therapy and daily living needs, I'm terrified. I require some pain medication to manage my joints and eds pain, and the incoming replacement is not keen on dispensing pain medication. I've seen one of the nurse practitioners for antibiotics before, she felt fairly confident with treating me because my doctor took really good notes, but I'm not sure how she feels on long term help. And I'm also afraid that my IV therapy will cease. I'm hoping for a good transition, even in the eye of all this bad. I'm being referred to a pain management doctor, and if they will take over my pain meds, maybe I can make the new doctor work. My cardio wishes I would lose my PICC line and IV therapy in place for a pacemaker, but until he fixes my low volume better, I'm sticking with it. It's one therapy that has worked so well for me, I truly am scared of falling back behind. I can tell a big difference when I end up missing a treatment or two. Until we started the every other day, I had been in the hospital every couple months for major IV treatments...I haven't been hospitalized since before my nursing home stay in September. Good thoughts appreciated, ive got one month until he leaves and my case is transferred, I'm gonna try and stick it out, but if the new doctor isn't bringing new ideas/willing to work with me on what helps... Gonna be in the new doctor business. Not fun, but gotta do what I gotta do. Also being referred to Ohio State to see a neurologist. My neuro ended up returning home to take care of his ailing parents, and his office has really changed. I'm hoping this neuro will help me manage my seizures, my migraines, and my outgoing gp is hoping this guy might have some ideas on my POTS to help as well. It's not all a cardio issue, like the first neuro I saw kept saying. And these are not all just pseudo seizures either, I have had a positive eeg, and with my history of no sleep in the past three weeks, it's becoming a recipe for disaster. I apparently didn't know who my friends were a few days ago, or where I was...not a fun thing, Other than my 150 heart rate postponing my surgery from last week until July (got pushed back to the main or again, my body just isn't handling a thing right), I'm good, I'm wishing I could go ride rollercoasters with the youth group at cedar point next week, and wishing I could go hiking, but right now, I'll take a nice stroll in my electric chair around downtown, making jewelry to sell at some craft fairs and online, and working on my stories and poetry (actually getting published for a local thing, but am looking at self publishing a book soon). Trying to find the little things happy, trying to allow myself to rest and keep my symptoms down, and keep going forward. I'm at the best I can be right now. And I'm trying to be okay with that.
  5. Given how the past two weeks mine hasn't dropped below 150 even laying down, I'm up for it. My next hurdle is getting my doctors on board, they are a fickle bunch. I gotta make it through this next surgery, and then maybe I can fight that battle better.
  6. Orange is the new black is a new one I enjoy on Netflix. Rest of my show list there is oldies like crossing Jordan, mash, royal pains as it comes out, switched at birth, and random movies. I love Greys anatomy too.
  7. I made these once, and couldn't get past the taste, but I have a weird set of tastebuds.
  8. Never used a cane, but use a wheelchair and a rolling walker... I'm threatening to decorate my wheelchair, or at least order a pink one when I can afford a new one, lol. If you gotta use it to be safe, you gotta use it, so might as well own that baby and be like "bam! I'm a rock star!"
  9. I've had a virus lately that has really drained me, but it seems like I get one or two decent days a week, followed by four or five that I'm literally crawling the ground. My friends know that Sunday's are my big day out, because i get to hang with my friends, go to church, eat out (anything I don't have to cook or clean up after, I'm all over), and then I will totally crash. The last two weeks I've had some major major symptoms on this day out, and I've been laying on a couch in the youth room at church, and yesterday, nearly ended up with a seizure because i didn't rest enough between activities. I admit, I'm horrible at listening to my body and it's needs, because I've always been expected to push through and been told "you're fine", so I will go and go and go, until the floor smacks me in the face. Trying to space my appointments out so not always on the go, and basically holing myself up in my apartment seem to be the only ways I get any sort of rest, and then I can't turn the brain off. I didn't need to bake bread today, but I baked two loaves, as well as a batch of sausage balls. Good thing out of that is, I now have food for the rest of the week I don't have to cook, just reheat. Because I won't be in the kitchen anymore for a bit. Looking into the vitamin deficiency as well. I know at one point I had some that were on the lowish side, but they were more worried about my sodium and potassium levels that we never gave it another thought.
  10. I'm lucky my insurance covers it in home. They initially didn't want to, but when I appealed the decision, I had to show how many times I was hospitalized, and how I ended up in ICU nearly every time for at least a day, just for IV therapy. All the sudden, they were all over approval, it just about made my head spin. On days I get my IVs, I get to eat solid foods more. On non treatment days,I spend so much time and ability trying to get my hydration in me, that solid food goes by the wayside. my friends joke I'm the queen of ensure, lol. I also found my body does better running the IV slow. A liter in the ER at full speed can bounce me for a couple hours, usually enough to get me home halfway safe, but running a liter at a slow rate, my body absorbs and holds on to it better. I currently every other day, but there have been times I have been unable to start a treatment, and can't get a home health nurse out for help, so if I have to skip, I at least have a small buffer. When I keep my continuity, and don't have anything else flaring me and making it worse, I'm fairly tolerable. Just ***** having to run the IV for 8-10 hours a day. Sometimes I do them overnight, but lately the tubing I've been sent isn't long enough to stretch and not cause problems, and I have a better window of ability to safely start it during the day, so usually on IV days, I'm hooked up by 10:30-11 am, to last all afternoon. It's a pain not to be able to get out of th building without carting the pole around, but the timeline usually allows me to at least grab my mail before starting, and then I'm homebound anyways. Seriously thinking of retrofitting my wheelchair with a pole for transport, that way I could take it with me easier if I had to, like in emergency, etc. I've actually brought my own IV to the ER before (it was still running, but doc sent me for more), and to the doctors office. You do what you gotta do with it. Is it sad that this has been one of the most helpful treatments I've done for my POtS? Meds don't seem to do a whole lot for me, and the side effects are worse sometimes, but this one helps, and sometimes I'm not sure even why, but I can tell it when I skip too far outside my schedule (like when I was in the nursing home, they had the hardest time getting on board with it, until I threatened to do it myself), just like I can tell when I miss a dose of midodrine sometimes.
  11. With my stomach, I cannot tolerate high amounts of sodium in it without major illness following. I get 9,000 mg of sodium in one liter of fluids, and with it going to my cells, rather than my stomach, which I think helps. Anything to bypass the ol' finicky gi system, I'm all for.
  12. I'm on one liter every other day, and have been since about September. For me, I've seen an improvement in some of my BP readings, as the way I run my treatments (very slow, over 9-10 hours), my body is absorbing the sodium better, so it's not just flushing through my kidneys super fast. I've been able to eat more on the days I do treatments, as with my gastroparisis/gastropathy, sometimes taking in all the fluids we need orally, I cannot eat because I'm just too full. My friends say I'm much more alert for Some time after a treatment (used to see a big difference when I would have to go to ER for fluids, and that was ran over the course of 45 minutes). I'm staying hydrated bettere through my vomiting spells, which is nice. I had been told once that if I'm vomiting for more than three days, I need to be admitted, this has def kept me out if the hospital. During the summer, it's a big blessing to, because I have temperature regulation issues, and if I get too hot, it cools me down, as well as helps with the massive sweating and replacing of fluids and electrolytes. I also do better on the lactated ringers fluid, instead of straight saline...once hospitalized, I received 12 liters over the course of three days, with most of that being the Lr for the electrolytes...I went from not being able to even stand, to being able to take a few steps, as well as sit up longer. The same happens in that spect for me with the saline; on days I do my treatments, I'm upright a little bit longer, a bit more steady. Basically there's more fluid in my body to circulate and try to get to my brain, otherwise every drop I have goes to my feet and out I go too. I know this type of treatment works for some, and not so much for others, but for me, it's been a big blessing in my life. I have a PICC line and run them at home. I'm dreading the day I don't do them anymore, as I have a doctor trying to get me in line for a pacemaker that will track my breathing, and then lower my heart rate to match it, and to qualify for that, I have to lose the PICC line. We have tried a different schedule and tried reducing it even, but it doesn't last long before I'm downed again, and the doctor is ordering emergency fluids. It's a pain, but in the end, it's been a worthwhile treatment option for me. Sorry if this is rambling, I haven't slept in three days due to other symptoms, and about to start my fluids now to run overnight. Hoping this helps with my headache as well.
  13. I was on it for a few months, but struggled with side effects too much to really see a different in my situation.
  14. Yeah, my place is super tiny, which is okay to a point. I've got two wheelchairs (one manual, one powered) which take up more space than I would like, but it works for me. Just when I was as sick as I was last week, I wasn't getting anywhere. I got as far as my couch, which is only about 8feet away from my bed or so, and laid on the ground for about two hours,never getting to kitchen or anything. What I love about my apartment, is it is Becia-sized, for lack of better terms. It's small enough that I can keep it semi tidy. I usually don't have help cleaning, I don't qualify for that type of home health (although man it would be nice to not be completely spent after mopping kitchen floor), so the smaller, the better. The kitchen took a lot to get used to, I'm still trying to adjust, but it's nice to be able to reach everything from my kitchen stool. I have applied for disability, and am waiting on my hearing (two denials in). I just passed the one year waiting mark on my last denial, been told it's still 18 months away for possible hearing with judge. All I can do in the meantime is just wait, do the best I can, and go from there.
  15. Yep, cut my hair as well. I wear a lot of scarves and hats, especially on days I can't have my hands up long enough to tame it down, or when I don't feel like doing anything with it (currently shaggy, haven't cut it since November, time for a trim). Slow cooker is my pal. Lately I've been doing a pork roast for pulled pork, and then I can repurpose it into many meals, usually lasting a week. I make tacos, sandwiches, an omelette if I feel creative and can handle the eggs (if I have them too many days in a row, migraine trigger, but once every now and then isn't too bad). I usually have one "big" cooking day, and will chop extra veggies if I have them around and freeze for later use (I use onion and celery like its going out of style sometimes), as well as make double batches of baked things and freeze for later. So handy on those days when being upright for more than a few minutes is dangerous. Also use my oven s lot... Anything I can just throw in there, turn it on and then rest for a bit, I'm good. Baked potatoes are good; just wash, pierce, spray with oil and sprinkle with sea salt, wrap in foil, toss in for 1 hr, maybe hr 15 depending how big. Tall stool in kitchen to sit on. Lucky my kitchen is so tiny, I can kind park myself in a corner and I can reach stove for stirring and put things in sink. I usually prop my feet up on my wheelchair when I'm in there a well. I have a round board I can place in my kitchen stool and use as extra space for placing my chopping board, rolling out dough, all from sitting in my wheelchair. I have meds everywhere in my place it seems. Stomach meds in bedroom, by couch and in purse, BP meds and pain meds in purse and bedroom. Best thing I can think of is having a support team as well. I have a friend and POA who has my key, and they can let themselves in on me having a bad day,so the buzzer of the door doesn't trigger my heart, nor do I have to move to let them in (my building is a locked down building, and we have to buzz people in). I can call, ask for them to stop by and bring mostly anything I need, or for them to come by and help me do things. Last week I had some sort of flu, and wasn't moving at all unless I was crawling and then laying down on floor. They stopped by, fed my fish, moved my curtains into bedroom so I could stay in bed and rest (only have one set of curtains right now), brought me soup, and apparently helped me off the floor (seizure, fever, bad combination). While I know they are not always available for this, it does help. I want a roomba so bad, lol. I miss vacuuming, I loved to vacuum. And Katy, what brand is your digital pressure cooker? I'm looking at upgrading my slow cooker set up, and have been eyeing different things, but you said yours has a browning feature? That would be nice
  16. We all deserve a break. Sometime I wonder if I got about 12 good solid hours of sleep, if that would help, I hadn't been getting much. Trying to get around and doing things, but dragging my pillow and blanket with me. so far, still at home.
  17. I was diagnosed with Ehlers Danlos Syndrome earlier this year. Nothing seems to stay in place anymore.
  18. I always worry about letting people down, whether in making the right decision to go to a nursing home again, or by asking for help even. I typically ask my POA when I get this bad, as he has the key to my building and apartment, so I don't have to struggle to buzz him in. I asked twice this week, and when he came yesterday, I was crying from pain and frustration because I don't want to seem weak, for lack of better terms. He has said he would let me make that call if I needed to go, only excersizing the POA part if I was unconscious, which happens a lot, or if he thought I wasn't making sense (after apparently not knowing who he was and how he got in, and freaking out more on Monday, he thought he might have to). I told him as long as he respected my decision, I would be okay. I hate admitting I cannot be alone, but I don't qualify for help in so many areas. Doctors just spent two years of my life try to fix me, for a 2 hour genetics appointment to completely debunk. I'm not gonna get better, I will only grow to tolerate it, be comfortable, and go from there. Last nursing home ordeal, I was there for intense physical therapy on my hips, as they had both dislocated, I was in a severe flare of symptoms, and needed more help than home could give. The therapy people and the nursing staff basically made a mockery of my conditions, and made things so much worse. I'm not a google article, sorry folks! Definitely not looking forward to going there if I'm required to do the physical therapy again, because it didn't do anything for me. What I do need, is someone to help me prepare food safely. To help me to the bathroom and back safely. To let me rest, instead of expending the energy i don't have right now, to garner my energy back up. If they plan on doing this said stuff with me, then I'm all for it. And I call the shots of when I leave, easy as that. three days, three weeks, whatever it may be. Other than my friends, I am alone. I have no husband, I have no children anymore (I raised my nieces, but they are now back with their mother now), it's just me. For the most part, I've figured out ways to do things safely, conserving energy as I can. The assistance groups see that, and think it's all peaches and cream, smooth sailing, she's fine, and for the most part, I guess I am. I've self taught myself how to manage tasks like this. But flares this severe, yeah, makes me wish I wasn't so independent. Also makes me wish more people had a key to my place too... Thank you for your kind words honestly that made me smile. Fever is back again, so I'm crawling to the bathroom one last time, and hopefully making it back safely to get some more zzzz's. I'd like to think I might be able to buzz a friend in later to deliver some dinner, since the miso soup I had last night was the first time I ate since Sunday... Don't wanna eat, but know I got to.
  19. We make quite the person right now. Heard back the results of my stomach tests and biopsies. Reactive chemical gastropathy was diagnosed with my stomach biopsies. The treatment? "Well, we are not sure, because you don't have gastritis." No, but I do have gastroparisis, and the RCG can be a result of that. How you plan on helping the gastroparisis, in hopes that this other thing can be better? "We are not sure at this time, just keep doing what you're doing." If I had a nickel every time I've heard that... Well, I wouldn't be rich, but I would be a little more cushy than my finances are now. Seriously thinking at referral to Ohio State for this, I think I've exceeded the limitations of the locals, like everything else. I currently have the flu, thanks to a peck from my youngest niece when she visited me Friday. Talk about symptom upflare. I was just getting out of a flare up, had managed pretty decent throughout, and then bam...friend came to check on me Monday, couldn't get me roused from the floor, and I apparently didn't know who he was, how I got there, but every time he helped me up, I passed back out. spending hours at a time on the floor is not my cup of tea, even worse when I'm coming to and have no clue how I got there, etc. he suspects a major seizure made me the way I was Monday, but I was also pretty hot to touch, so no doubt a fever didn't help that. I haven't moved from bed unless it's to try crawling to the bathroom since Sunday, when I passed out at lunch out with friends, and couldn't stay upright. When I do get up, something that used to take two minutes, is now taking 45 minutes or longer. Upright and I are just not mixing. There's talk of me possibly going back to a nursing home in times like this. I had a major freak out with my POA about this, as my last experience was a nightmare. I agree, it would be nice to have some extra help when im this symptomatic, but so far, I haven't qualified for anything, if things don't begin to get more stable in the next day or two, I will most likely be admitted, if he has his wish (he's on the board of a local nursing home as well...sometimes I don't know if it's helpful or scary how powerful he can be; he even got a U.S. Congressman involved in my disability case, because "Bob owes me a favor."). I admit, I hate being alone when I'm Iike this, it's scary enough to me as is. But I have been doing something very unusual, which is asking for help. Jsut seems to be met with a lecture about how I usually have it together, should be "fine" now, and met with "I'm so busy, I can't do that" a whole lot. it would be nice if home health could help out, but I keep being told I'm too independent. I'm sorry, I didn't realize being diagnosed with EDS and POTS meant I just gave up trying. I had hopes of going back to bike racing one day...right now, I just want to make it to bathroom and maybe kitchen for a brownie right now. And wait until I have surgery again, oh, I will be fit to be made, I'm sure. Not looking forward to that part again either. In the meantime, I'm trying to keep myself busy with jewelry making and knitting/crocheting, trying to accept my current life on the couch/in bed. Doesn't help that the weather has been gorgeous lately, and I just wanna bask in it. Hoping by Sunday some of this has resided, and I can run slides for church. one can hope, it's all I've got. I'm still reading along here about every day, just not saying much. Don't have the energy for it most of the time, but think of yall often, and hope everyone gets to enjoy some nicer weather and lesser symptoms.
  20. I kinda had to beg my doctor, but after he realized I was needing to be hospitalized about every other month for major hydration, how every time I ended up in the ER, they'd give me one liter and I would be able to stay halfway alert, and at the major push in of my Power of Attorney and best friends, he managed to get a PICC line placed. Originally he wanted to do a port, but the doctor wouldn't place one not knowing when it may come out, so PICC has been my lifeline. Originally I was once a week, but after one week of that, he upped to three times a week at a slow drip (8-10 hours seems to be optimum for my body, the slower the better my body seems to absorb it all and not hit my kidneys all at once). about three months of that, and we bounced it up to every other day, which is where I've been since about August, and will be to at least May, when I do a reevaluation of my therapy with him. My first PICC came out on its own in March, so the next day, they placed another, but it seems like when this one will fail, the PICC line team is going to fight to get me a port, because of the risk of infection being less with them compared to what I have now. I'm very lucky, no infections, just some skin irritation from the dressings, and while the other was beginning to not flow as well (began to scar and clot up, but fell out before there was an issue with that), my new line is great. in addition to my begging, I had presented him with info of how this has been helpful. The first hospitalization they gave me 8 liters over three days, and it as amazing how different I felt. The second instance that showed how much this helps me, they gave me lactated ringers instead of just saline, and the extra electrolytes really helped. my POA and roommates were shocked at how that helped, I was able to sit up with my feet down to take a stroll around the hospital, and still remain somehow coherent. While my therapy hasn't gotten me out of a wheelchair (in it for EDS issues, as well as still being very sensitive to positional changes and passing out within minutes of standing), it has helped me a lot, very noticeable on the days I have to be upright in my chair for lengths of time. I like to be able to prop my feet up, but the saline at least helps me have a blood pressure to the point if I can't, I have a bit easier time with the feet down. Stil have a lot of blood pooling, but the extra volume helps. I also have issues taking in enough sodium through my gi system, so the 9,000 mg I get via IV, slow drip, really helps. I joke on days I get my IV treatment, I get real food and I enjoy eating. Days I don't, it's salting, throwing up, and more fluids than food,
  21. I can nevere remember what brand I have, except I was just given a purple 10mg pill, and find it doesn't work as well as my little tiny blue pill. but I remember the Mylan so well...one nurse observed when I used it in the hospital "it's like you're not taking anything." They gave me one of mine from my bag the next time, the little blue version, and bam, it was working.
  22. Mylan never seemed to work either me, and it was very difficult to swallow.
  23. My doctor said the same thing about the elevation! I too think that would be nifty, but I'm kinda partial to the heavy duty machine I have now...it takes the sidewalks of my town better than anything else I've seen in this building, which people have quite a few motorized chairs. One guy broke a wheel, another guy pretty much took out the axel in the back of his... Mine keeps trucking over rough terrain. It's worth the stability, as I'm not out unless im fairly stable on it, and am at a time I can tolerate my feet down.
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