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About joyrose

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    Encouraging others who are going through autonomic problems as well as other difficult times. Writing, watercolor painting, gardening, reading and daydreaming.
  1. Hi Everyone. It's just us in the room, right? OK. Well, you can see by my medical history at the bottom of this frame that I've got a long and painful 30 years behind me in the 27 years of marriage. My husband knew that I wasn't strong and healthy, but he took me as I was. Intimacy is your relationship with your mate, expressing it in the way of the golden rule-do unto others as they would to unto you. As much understanding and thoughtfulness as you want, make sure that you are remembering to give it. Sex in the 27 years of our marriage has been wonderful and exciting, and we've had two childr
  2. Dear Melissa, You deserve a merit badge for Effort because you have put out an extraordinary amount of strength just to "keep on keeping on." That is so tough. I may be able to find someone to help you. You can email me and I'll give you my phone number. I care. Deb
  3. That is such wonderful news. You have suffered for so many years and it must be so comforting to have someone to affirm your symptoms. Did she mention anything about an "abdominal migraine?" My neurologist will say, that when I have a headache and my gastro-intestinal system is completly off, I am in a migrainous state, a whole body migraine. Dr. Chelimsky is the head of Autonomic medicine at University Hosp. in Cleve. Ohio. He really knows about dysautonomia and trained under Dr. Low at Mayo. Whatever it is that is causing your pain, I hope that you will soon find relief . -Deb
  4. You have been through the wringer, haven't you? Whatever the diagnosis is, I just want you to be believed, be correctly diagnosed and find relief. Deb
  5. Nina, You sound like you are suffering so much. I've been hospitalized with sinus infections in the past and I know how terrible someone can feel. I hope that you can pull all your stretched parts together and huddle under a blanket and get better. To clean out sinuses here's what I've done and I've never had a severe infection since I started doing this when one takes hold. I mix up some saline and put it in a dropper or the smallest bottle. The water should taste pretty salty. Lie down. You can put it in your nostrils now or you can spray a 12 hour decongestant first. After each spray or
  6. Dear, Dear Julia, What a terrible, horrible day. I agree with the others about the position of your head and neck, combined with the trauma, maybe low fluids, and because of the discomfort, your were tightening up, maybe even holding your breath and doing a valsalva. Put it all together and it's "who needs nitrous oxide?" I hope that you can snuggle up and take care of that sore tooth and see the doc soon to discuss what is going on. Here's a hug. -Deb p.s. Hope you billed the dentist twice what he billed you.
  7. I agree with Melissa. Your vision is precious and needs to be maintained and protected. Floaters are normal but when you have a neurological or any other medical issue complicating things, regular visits to the ophthalmologist (if you can see one rather than an optometrist) are in order. You won't regret it. -Deb
  8. Dear Dana, Welcome! You found us sooner rather than later which is a good thing so you can learn from us. Dysautonomia is a group of symptoms, and different for everyone. All of us can identify with the frustration of dealing with an uncooperative body. I care. -Deb
  9. Dear Morgan's Husband, You are doing a wonderful job of loving her and being sensitive to your familys' needs. Thank you for letting us know how she is. Take care of yourself too, and let her love comfort you in this time. -Debi
  10. Nina So glad to hear that things are working again. It's amazing what the rest of the world takes for granted with a little "flush!" Oh, I know how you feel. I'm on morphine and have gastroparesis anyways. Glycolax sometimes does the trick. I don't want to write a blog but it becomes quite a daily focus, doesn't it?!! ---To hope-ful, I am so sorry that this has become such an overwhelming problem. You are smart to find some treats to enjoy. ---Ithomas, Stimulants full-time? Wouldn't that get to be the slow tolerance build-up and after a few years you'd need a handful? Or is that just the pri
  11. Ha, Ha, Ha, I laughed so hard when I saw this. I, of course, thought that I was the only one in the world with the "shower secret." When I read your postings I felt like I was sitting on a porch with everyone and we were laughing together, until our sides split. Somebody rolls up a pant leg, and pretty soon another round of giggles start. What stories born out of such pitiful bodies. Aren't we quite a bunch? I'm glad that we have each other and that we can improvise in our need. -Deb
  12. Oh Morgan. Isn't it always with great hope that we enter the hospital? I am sorry that you have to go in but I hope that your doctor, his great smile, and his great brain can help you make some progress. Rest up. I care. Deb
  13. I take atenolol, clonidine, Topimax, morphine, Mestinon, Paxil, Robinul, Then as needed: visatril, Zofran, Chloral hydrate, Ditropan, I've been on massive doses on the first 2 drugs. Since starting on the Chloral hydrate a month ago, I've been able to cut back on my paxil, morphine, ambien and doxepin. -Deb
  14. Dennis, Have you ever considered Reynaud's? It's a neurological problem and your hands and feet severely cold and white or even yellowish looking. So sorry that you are so miserable. Temperature fluctuations are hard. My doctor prescribed Robinul at bedtime and that helped. -Deb
  15. Dear Nina, You are so persistent. You try so hard to find out the answers. You still keep dancing. -Deb
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