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Everything posted by Cala

  1. Hey, where I'm from, people have those blasted Bluetooth thingys clamped to their ears and heads 24/7 ha ha ha Most of the time I can't tell when someone is talking to me or to the random person they are on the phone with, so why not music via Bluetooth? IF I had money I'd so do exactly that ha ha ha But I also cheat a bit LOL have really long hair so hiding my earbud isn't even a concern for me, the majority of the people around me don't even notice it.
  2. When I get really bad, I use music. Not what you think though. I bring up Pandora on my phone, or any music player, put in "one" headphone, and put it on a Spanish rap channel. (I do not speak Spanish) or a music only dubstep/dance heavy beat channel. This noise, in a language I can not follow, with a beat that often will mimic the heartbeat, distracts me and will NOT let my mind do but two things. What I'm doing AND listen to the music. It's important though to only use one headphone. Using both will drown out everything around you, put you on the music only and your mind will shut it off and take off in a million directions. Also, with one headphone, no one can hear it, you can still talk to people, and carry on like normal. I guess you could use just about any music you wanted but calming classical or ancient music just makes me think of things (bad choice) country music....well you know what happens with country music LOL That's my idea :-) it works great for me
  3. I gave up sugar several years ago. Lost 60 pounds when I did and it helped me a lot. When I do consume sugar now, if it's very much at all, it has a time delay reaction, my blood sugar plummets in a couple of hours and my blood pressure goes right along with it. Takes me days to get it all back in line again. I assume my body is dumping insulin out on me like a fire hose LOL
  4. OK this is what I pulled up when I waded through all the Cf sites. Aquagenic wrinkling of the palms (AWP) The cause of AWP is unknown but relates to sweating. It may be caused by a salt imbalance in the skin cells, which results in increased water retention within these cells and increased transepidermal water loss. Some cases have been related to different medications, such as non-steroidal anti-inflammatories and some antibiotics. My guess is it has something to do with all the fluid/salt fighting I do with my body most of the time? Since CF is not something that is anywhere in my family tree and I had no sign of this problem until my Dysautonomia made itself obvious years ago. I do know I'd live in that saltwater pool if I could...man I felt normal when I was in there
  5. Oh I did notice last year that it does not happen at all in saltwater. So a saltwater pool is awesome!
  6. My palms do exactly the same thing!!! Dead on, your pictures could be my hands LOL I always thought it was odd because I don't remember when I stopped wrinkling like I'd do as a child. But it seems like it's been like this forever. And it's just water that does it, doesnt have to be soap, chemicals or anything else. Really weird, so what part of Mercury were you from? I was from the east side. :-)
  7. Don't look a gift horse in the mouth LOL it may go away tomorrow but enjoy it for however long it lasts :-) Although you could be on to something. I do my best with feeling decent when I'm in a lot of sunshine/outdoor light. I'll even sit in the sunlight in windows during the winter whenever possible. Even going so far as to hit tanning beds when I was at my lowest when I used to work retail big box store and couldn't get enough light. I've never really connected feeling mentally decent to how symptomatic I am but they would have to LOL Maybe I need to start keeping a log for myself. Excellent theory here! Keep us posted!
  8. I don't think it causes them, my heart does that by itself every time my blood pressure goes above a certain range. Not high blood pressure by any means but higher than normal for me. Example, I get really stressed out or in pain or the two together (migraine pain) and my blood pressure will elevate and if it comes over that invisible barrier, my heart starts fluttering. It goes crazy sometimes. That why I was kinda sorta expecting it to happen. I've had it happen when I over do the salt every now and then and I'll check my blood pressure and it's reading "gasp" almost like a normal person LOL but my heart is thumping around like a Mexican jumping bean in a match box. SO don't let the medicine freak you out. I do not think that's what's doing it
  9. Hi guys, time for the report :-) It worked about like it figured it would. I tried it twice. Both times at the house. Once when I felt fairly normal and again when my heart rate went down low and my blood pressure bottomed on me. Each was the 2.5mg (I weigh 125 pounds and I'm 5 foot 4) Both times I noticed my blood pressure jump within about 25 minutes. Prolly about 10 points. I was checking it but I wouldn't have had to, I could physically feel it climbing. Along with my hair LOL I felt like I had bugs in my hair. Hands were tingling as well. (My body does this when my blood pressure bounces around anyway but just not this bad) It does make my heart go out of rhythm though (what I call stump jumping or butterflies flapping around) and it seriously unnerved me in that respect so not so sure I want to try that again for a while but I did give it a good old college try. It is something I can keep for emergency use in case I was out in a very bad place to be like that but let's hope I don't start visiting street gang hang outs anytime soon LOL I think I'll stick with salt and Gatorade and just hang out under the Christmas trees and swap stories with the other shoppers while it works LOL
  10. Oh yes indeed! Anytime the barometric pressure shifts drastically one direction or the other it affects me bad! Can feel like my brain is being squeezed from the inside. My kids always refer to it as my "hackles" because I always "know" when a storm is about to turn nasty LOL but any shift affects me to some degree. Sometimes they are terrible but they can affect me the other way as well and make me feel really good. I guess it's just easier to overlook the good ones. I have only ever heard of those house fan things before and they honestly sound like something out of a horror story.... I can only imagine what they would do to me....
  11. My directed dosage is 5mg 3 times a day and not to take 4 hours before bedtime. But I've not taken any of it "yet" I'm doing the paranoid, nervous, freak out, ask too many question thing I typically do when confronted with a new medicine that will either help me or possibly kill me LOL I did that with the Mestinon and left a bottle sitting for 2 months and regretted with my whole being later because that stuff actually restored my legs to me (I have neuropathy as well) neuro gave it to me and didn't truly explain what it does etc... But tampering with my blood pressure hr really terrifies me. I think I'm going to try splitting the pills down to a 2.5 trial and see what it does to me at home and go from there.
  12. Yet another question on this drug. I'm sitting here looking at my pills, 5mg and I already know I'm going to be splitting these up before I attempt to try them but my question is, my bp is all over the map most of the time. I've tried tampering with my hr with beta blockers and things before and the results were not pretty so I'm paranoid of anything long term. My heart rate is usually 100 to 140 and the bp stays around 90/70. I function "okay" at this level right? SO there are times when my heart rate tanks out for no reason and it plummets down under the 80s when I'm standing up and my blood pressure bottoms out and that's when I have. my problems. If this happens, if I was to take one of these pills, how fast would it start to work? For example, if I was at a store and I end up almost passing out under the Christmas tree display and I find I can't safely leave, would it be "in theory" a good emergency drug to use to raise my blood pressure? Has anyone ever used it like this?
  13. AWESOME! I was just browsing for stuff last night to print out and for stuff to post! That is perfect! Thanks!
  14. I was sharing this post during a debate last night and it got some serious information out guys! While the people that were with me were well aware of "my" condition, they were not aware of the higher end extreme of the tachy and several were shocked. I could see them, hands on their chests, eyes round, imagining what that would feel like LOL Always teach whenever you can! Made me show my age by blurting out.... And now you know And knowing is half the battle G.I. JOE!!!!
  15. OK here's a question guys or gals... I'll try to make it non tmi he he he What is going on when my digestive system seems to be in hyper drive? As in, I eat something and an hour later (it seems) it comes back out the opposite end, with very little change? It's like I'm not digesting anything at all. I'm losing weight but not rapidly so I'm not alarmed yet...but it's been going on for long enough I'm about to bring it up to the already harassed doctor :-) Anyone else with this problem?
  16. This sounds awful and I have to ask this.. if you were talking to your boyfriend on Skype when she swooped into the room, where did he go during this interrogation or did I miss something major? I'm understanding he lives with her and she came into the room with him while he was talking to you and started in on you like that? IF that's the case, I just don't know who's to blame more. Her for doing it or him for allowing it. I'm a mom, my babies are 21 and 17 and if I had someone talking to them like that I'd take their face off and hand it to them, so forgive me for being a bit "protective" here. I just don't think it sounds right or healthy for your boyfriend to just allow this, I don't care what the situation. It makes me shudder to imagine your future. Someone who loves and cares does not let someone do this Hon...they just don't. I may be wrong. The situation may have been totally wrong from what I read and I may be reading something off and if I am forgive me but if I'm not I want you to reconsider something. Part of being healthy and living strong is being around loving understanding supportive people who will help you be what you can be. Not people who drag you down and undermine what you accomplish. And someone who just sits back and allows others to undermine you are just as guilty as the ones doing it. Love is beautiful and bright, but it can be like staring into the sun, when you look away you can't see anything till it's too late
  17. I think the Florinif salt and water is really just turning us into sponges and we are just rippling when we bite into something. Bwahahaha! I think we all need to go live in a pineapple under the sea! :-) Sorry, I couldn't resist, forgive me
  18. Yeah that's what I'm seeing with the research I'm doing. I'm still waiting on the doctor to contact me back. The pharmacist told me she didn't want to give it to me, knowing I had hypoglycemia, without me having verification from the doctor about the reasons for it and feeling comfortable about taking it. I'm not feeling brave about this even with his expectations LOL I think I'd rather just eat every 2 hours like I do now than risk that.
  19. I was so excited last night that I didn't actually look at what in had prescribed LOL Today I looked at the pad and I realized it was too much going on for the poor man and he must have misunderstood me seriously wrong LOL he prescribed me miglitol (Glyset) for my low blood sugar... he must have gotten seriously confused or misunderstood me because to my understanding, this is for high blood sugar? I need to talk to my pharmacist in a bit and do some research before I try this one on for size. I'll let you know.
  20. I tried attending church and it didn't work well for me. I'm a member of a very large church and bless them, they are all very helpful friendly social loving....yeah...you can imagine what happens LOL They do however record the sermons every Sunday and I can watch them televised from the safety of home. I know it's not the same but it's safer for me :-) You ARE a rebel Becia, my son was in band in college and I tried doing some of the shows and such but I couldn't handle it. Even with earplugs. You need a medal of honor for keeping that as a part of your life. My dog ears were my undoing LOL However I have no problems listening to music on my headphones which I don't fully understand. I'm grateful though. I couldn't live without my music... And I have Rosetta stone, I looked up Arabic but it won't teach me curse words /sulk And Darlene, those adrenaline rushes are like warning shots to me LOL I know when I get one that disaster is looming. If I'm driving and someone "almost" runs over me and scares me, I pull over and stop driving as soon as possible. If I'm shopping and a child almost falls out of a lady's shopping cart and terrifies me, I find a place to sit, pronto. I know it's like the coming attraction LOL and it's usually fairly soon so I try to chill out, snack on something and try to head it off. Doesn't always work but it sure beats telephone pole tango, which sounds awful by the way.... Yes even losing my temper at the return counter can bring it on at times LOL thus I try to avoid confrontation as well
  21. So I just arrived home from a 3.5 hour visit to my GP. Interestingly enough he took everything in stride, called me a new referral in to Vanderbilt without batting an eye and handed me paper proof that he had done so. He also looked over his own files, got on the telly and demanded files from my neuro to be sent. Went over them with me when they arrived. (Many of these test results of tests I was unaware were even done, much less discussed with me afterwards) He was appalled that the majority of the tests were done well over a year ago and no follow up testing had been done despite my repeated complaints of getting worse. Last blood panel was 14 months. My Gp ordered full blood work, prescribed medication on the spot for my low blood sugar and for my low blood pressure. (Sternly stating that "This has been going on for months how can this "man" ignore this problem???") He also printed out and signed a disabled parking permit and handed it to me and told me to call Vanderbilt in the morning to verify and he would see me every week for the next month until he gets orders from Vanderbilt. I think my GP just fired my neurologist LOL I think I also need to put this one under the good doctor stories because first of all I had honestly no idea he knew so much, second I was floored at how hostile he could be when crossed. There ARE some good ones left!
  22. It keeps on getting better and better.... Called Vanderbilt earlier, it's been right at a month since my referring doctor sent the referral for an appointment right? And they told me it could be up to 2 weeks, so I figured 4 weeks was a bit much. They didn't even have my name...I find out the doctor never even sent the referral at all... I sat down in the floor and didn't even have the will to cry. Now I understand why so many patients come in the door looking for a fight the way I seen those customers in retail. I guess I'm going to have to pull on the big girl panties and become like them.
  23. Yay! :-) was waiting on that answer so I could go to sleep LOL
  24. OMG that is horrible Bedhead!!!! I wish they could find a way to install on/off switches on our body parts! My gastro stuff is just every now and then I can't imagine dealing with it for that long. How awful! /hugs
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