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Everything posted by SunsetParadise49

  1. Today at the doctor's office the bottom number was 80, I forget what the top number was...when I am in pain which I am in a lot now, I do have high blood pressure typically. Even so, my heart rate is normally tachycardic.
  2. I've been diagnosed with H1N1 today. Yesterday I was sent to the ER for some fluids because I was passing out. They gave me 1 bag of saline and I felt as good as a POTS-y can get for the rest of the night. At 3am today I woke up sick. Bad aches and pain, scratchy throat, really bad cough, fever etc. I went to the doctor and he said that he believes I have the Swine Flu. He can't actually test me for it unless I was in the hospital because of a shortage of test supplies. Anyway, since Monday, my heart rate has been oddly normal. It's been in the 70's. I have not been taking my beta blocker because of my heart rate being on the normal side but I just don't know what is going on. Every time I am sick with something "big" my heart rate is high, and now it's normal? I'm not complaining but just want to know if this has happened to any of you before? And how many of you have been hospitalized because of H1N1? I'm kind of scared that something will happen and I will be rushed to the hospital but if I were already there, it would make things easier? Thanks
  3. Then what helps to get IV's in when warming my arms up and drinking a lot before hand doesn't work...
  4. The hospital that I go to has an IV team which the members of the IV team are either RN's or LPN's who wanted a change in careers. Then they have the phlebotomy team who are specially trained. The hospital has now changed their procedure to all IV's will be put in by the IV team. ..even in the ER.
  5. Thanks Poohbear. I will stick with IV's and blood work for now until it is no longer possible, I guess. I can't even begin to imagine what it would do to my mom if I got an infection and didn't make it. We've become so close through out the past 5 years of my being ill....I just know she couldn't handle it. Thank you both for your upfront answers.
  6. Thank you Bellamia. I know someone too that just died recently from sepsis possibly from her port (that's what I think happened) so I am aware of all the risks. I am admitted into the hospital just about every month or two and am in the ER a lot. Blood work is quite frequent as well. I was in the hospital back in September and it took 3 IV tech's to get an IV in me. They too ended up using a pediatric needle. Getting an IV in me on the first or second try is extremely, extremely rare. It typically takes over 3 tries and as much as 13 tries...not joking. I drink a lot. I love ice actually. I suck on it all the time but don't feel better per say. I drink before getting blood work and it sometimes helps and sometimes doesn't. When I'm in the hospital, they normally always put hot soaks on my arms to warm my arms up. Again, it doesn't always help but sometimes it does. I am used to being stuck and I don't mind it much anymore but I get tired of all the tries it takes to get blood drawn or an IV put in.
  7. Hi Everyone, On Friday I had my appointment with one of my cardiologist's in Hershey and we were discussing all of my problems...she actually listens to you! Anyway, I brought up the fact that when I need blood drawn or an IV they have major trouble. They can be in the vein and have no blood return or my veins will keep rolling around so they just can not get into them. Plus they are deep I am told. For IV's, it takes multiple tries 95% of the time....it's ridiculous and gets uncomfortable pain wise after a bit. So Dr. Ting suggested a port under the skin. She said that she would highly suggest it but that is her opinion and she knows that it is a very touchy subject with other dr's so it's up to my mom and I to proceed with the idea and perhaps bring it up to my family dr and see what he says and go from there. I am nervous about the idea of having a port. More nervous about having it put in. I think they put you to sleep if I remember correctly. But I think I also remember hearing the patient was in some pain after it was placed in. I have a few questions: 1. How does it work exactly with it being under the skin? 2. Does it hurt to access it and draw blood or receive IV fluids or meds? 3. What is the risk of infection? 4. Is the risk of infection HIGHER than the risk of getting an infection with a regular IV? I think that is all for now...thanks for any advice that you can give me! Thank you!
  8. Pretty!!! Are they getting along alright?
  9. I love mestinon. It has improved my quality of life a lot....I'm less dizzy, don't pass out as much etc.
  10. When I was still on my parents insurance I ran out of my Florinef and the mail was very late in coming (they have to do mail order for prescriptions) and I was terrible. I could hardly stand, I was so dizzy, and just felt plain old weird. I really do better on medication. And now that I'm on Mestinon, I can defiantly tell when I need to take the next dose. When it wears off, I know it!
  11. I wish you luck ! I don't have any advice for you as I'm in the US!
  12. If you have EDS, TMJ is usually a follower.
  13. I usually just laugh it off because I end up saying something really dumb....other times I just get so frustrated that I stop thinking about whatever the brain fog is messing with.
  14. (((hugs))) I was approved the first time ....feel free to PM me if you have any questions.
  15. Mestinon is working really well for me. I'm having no side effects which is really nice! Thank you for all your well wishes!!
  16. Just wondering if low calcium and high phosphorous is a Dysautonomia thing or not. Thanks! p.s. I made a mistake in the title
  17. Do any of you have this problem too? My blood pressure drops when I'm laying down and the lower it goes, the more my heart rate increases. Thanks in advance!
  18. We're going to try mestinon. The pharmacy has to order it but I'll have it by Monday night. I hope it helps at least a little.
  19. I've taken it and I had no problems with it. But if you are concerned, I'd talk to your doctor or even pharmacist.
  20. Thank you everyone....I am doing better today mentally, health wise it's the same but mentally I feel a little better from all your support! Thanks again!
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