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About Becia

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    Advanced Member
  • Birthday 11/29/1981

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  • Interests
    Music (especially drumming...), sign language (am fluent), crocheting, reading, cooking

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  1. Thanks Kim for the idea of tracking for the review! I hate not knowing, so I'm already nervous about that and it hasn't even occurred yet. I'll start a new tracker on my computer for this. and thank you everyone for your kind words. I've had a few days to destress about it (and replaced that stress with fighting with a doctor apparently) and am beginning to feel a bit better about it. Still a bit of a mixed bag, but getting better.
  2. Sometimes the thing you want to hear, is the hardest to process once it's out in the open. Seeing something in black and white, in your hand, can lead to a mixture of emotions. Do I feel jubilee? Or is this disparity? My disability was approved. Not just approved, but FULLY approved (or "fully favorable" in SSA-ese) back to July 22nd, 2013. It's got some crazy talk in the decision process making that has me extremely freaked out, but I'm trying to not focus on that. Just like when I finally received a name to everything I experience, the POTS and the Ehlers Danlos... It's offi
  3. I've been fighting some major insomnia for a couple weeks, getting to the point of "I know there's nothing on the walls, but I'm seeing something." I've been changing everything that I can think of. One thing I've started using is my iPad, and a white noise/sleep sounds app that I downloaded. I've always liked the sound of rain and storms, so when it is time to go to bed, I start it up, and put it right by my pillow. I can set it for hours or minutes. Usually about 15 minutes I can start relaxing, and while I may not go completely asleep, I do feel a bit relaxed. I also have started using
  4. You know you have POTS when... at the amusement park, you're don't have to ride the rides for that adrenaline rush, you just have someone push you real fast in your wheelchair. Your idea of a good night is simply a good comfy pair of pjs and a movie in bed, followed by 8-9 hours uninterrupted sleep. When you refer to your IV saline as your best friend. When you name your aides to daily living, such as Portia the Port (my medi port), Pip the Pump (my IV pump for the saline I get every other day), etc. I'm sure I have a few more, but brain fog and the fact I've had three hours of sleep since Wed
  5. When I was diagnosed with POTS, and then later with EDS, a friend popped her head into the media booth I was hiding in at church (because I couldn't tolerate the sound and lights of the youth room during Sunday school), and said "you have a name for everything that's coming against you. No longer can doctors sit back and tell you you're crazy, nor can you sit back and wonder if your mind is truly the reason for all of this... It has a name, and that makes it real. Now that you have a name for it, and your doctors have named it, now we can go about trying to figure out how to live with it." H
  6. I echo Sarah's comments of using the BP as a tournequet and using heat to help the vessels. Being a former phlebotomist/lab tech, for people who were difficult sticks, we used many warm towels, heating packs and sometimes even a little light massage to help the veins relax and come near the surface. Only bad thing about doing this sometimes before a blood draw is it could sometimes lead to changing the results, as manipulation could lead to hemolysis (breaking down of red blood cells).
  7. A belated merry Christmas to everyone from my little corner of the world...which currently consists of the couch and many pillows, lol. I chuckle at the "having pots has taught me how to cope with feeling bad" because it's so true. After all my body throws at me, there is truly not much that sways me. as mom once said, "ain't no thing but a chicken wing". I do hope all are having a easy day after all the festivities. I was only out of the house for four hours yesterday, and feel like the truck just ran me over a few times. Between POTS and EDS issues with me, it doesn't matter how short a
  8. I know with me having EDS, my veins are fragile and can easily blow. I've only got a few decent ones keft for IVs if needed. I had PICC lines for over a year since I do IV saline infusions at home, but the doctor finally placed a port in my chest for access.
  9. For over a year, I've been in IV fluids every other day. I'm fortunate that I never had any infections with my PICC lines (have had one in each arm, I now have a medi port placed and accessed ), and my doctor has been very supportive in using this as a therapy for me. I am also on a 0.1 dose twice a day of Florinef with this. the biggest drawback for me, is I benefit from the runtime being slow, such as over 8hours. I get ivs in the ER, run at their fast "get her out" rate, and within 15 minutes, it's flat out all in my kidneys. Slower run time, I can benefit from the dose of sodium it giv
  10. Effexor was a bad drug for me. I was on it for 2-1/2 weeks, and it set me into a pots crisis that a hospital stay and then a nursing home stay for a couple months to get my energy back, was needed. I was nauseated, throwing up, having horrible thoughts, lightheaded, dizzy even worse than normal, and I couldn't function. I've never been prescribed clonazapam, but I have heard from others sometimes doctors don't like prescribing it. I do hope you find something that works.
  11. For over a year, I've been on IV saline, one liter every other day, for my POTS. My gp was actually beneficial in getting this therapy for me, and it literally has been a life saver. I was being hospitalized for my POTS every few weeks it seems, but in the past year, I've only been in the hospital three times for it. I just recently had a port placed in my chest for my access, as my veins were not that great for the PICCs anymore, and hen I was hospitalized a few weeks ago, they determined the last one needed replacement. Due to how I was there, they did some research, realized I've had two
  12. I was told the compression starts at the ankle in stockings, so I can't see whether open or closed toe would make a difference. I just purchased thigh high stockings after a couple years of knee high (the doctor wanted me in waist high, we compromised with thighs)... And I cannot get them on, lol. i ended up dislocating a hip in the middle of trying (I'm also EDS), and kinda had to lay there like a turtle on its back for a bit. It was actually funny, but man... Gonna have to work on this a bit, lol.
  13. I just became an "as needed" user of this, after being on it everyday for two years. i can use 30mg a day, split over three doses, if needed. We set parameters with my BP, using it if it drops 135/85 or below (because once the moment I sit up, or have my feet down for an extended time, my BP starts dropping). I also am hyper-POTS, so I have a tendency to have it run higher, and for awhile they were using it everyday with me to help keep the blood pushing towards my brain (since it works as a constrictor for my vessels in my extremities). So far, since we've starte this protocol, I've used at
  14. I'm Hyper-POTS, and tried Effexor at 75mg once a day for three weeks. I ended up in the hospital, and then a nursing facility for two months after. That medication totally messed me up and fried me. I was doing a trial run of it to see if it would help with my EDS pain, and my depression. It literally did the opposite for me (increased pain, increased depression to a very dangerous level) as well as nearly fried my autonomic system. I wasn't maintaining anything, my body was in overdrive so much that I had one of the worst flare ups ever. I had a similar reaction to Paxil and Celexa two year
  15. "Let's just make your midodrine as needed". It was music to my ears, because the last doctor I talked about reducing the midodrine because it seems like sometimes it's hurting something else, promptly told me I was crazy, and how dare I ever think I will be with this medication for the rest of my life. I'm in the midst of another long term in patient stay at a physical therapy center, trying to regain my energy and trying some new stuff, after about two months of not being able to safely function at home on my own. One thing led to another, and bam. Also just had some more oral surgery, so I
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