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Rachel

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Everything posted by Rachel

  1. "I have learned to kiss the wave that throws me against the Rock of Ages." Charles Haddon Spurgeon

  2. It has been a wonderful 7 years! Thank you, DINET community, for all you have done for me! It has been a pleasure volunteering here. I will now be devoting much more time to rest. I will miss all of you and will be sure to check in now and then! Meanwhile, you can find mere here on facebook: https://www.facebook.com/CranberryTeaTime

  3. Hi Midatlantic, I'm glad the video was helpful for you. I hope it is helpful for your doctors too! You mentioned that you wish you lived near Dr. Svetlana Blitshteyn. In case you weren't aware, she does offer phone consultations. I'm not sure if this would work with your insurance or not, but I wanted to let you know in case it would be of benefit to you. I hope that you will be able to find the help and treatment that you need! Rachel
  4. "Therefore we do not lose heart, though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:16-17

  5. My fatigue and muscle weakness continue to progress, and I continue to struggle with migraines. I am scaling back on my already substantially limited activity level. I am seeking to live well with dysautonomia and focusing on being a wife and a mother to the best of my ability. I won't be doing much volunteer work for DINET, but you will still find me online, whether on the DINET facebook page, the forum, or on my blog. You are always welcome to visit me in these places!

    1. Rachel

      Rachel

      I have enjoyed my time serving as DINET president, and I am thankful for the various ways I have been able to volunteer for DINET over the years. It has been challenging, rewarding, and fun. Thank you, DINET, for allowing me this opportunity!

  6. Thanks to a sweet friend, I now always have an extra spoon! :)http://www.cranberryteatime.com/2013/11/an-extra-spoon_4.html

  7. Just wanted to stop by and say that I'm thinking of you today!

  8. Happy New Year! May 2013 be your best year yet!

  9. I have a new lift chair from a friend. It has been such a help to me! http://www.cranberryteatime.com/2012/12/a-special-friend-special-gift.html

  10. Happy Thanksgiving!

  11. After 6 months I am mostly unpacked and settled into our new place. Hopefully in another 6 months the unpacking will be complete. I'm slow, but I'm getting there. :)

  12. We are moving from Georgia to Minnesota today. I will see you all when I have internet access again!

  13. MartiZ, Yes, it is true that there is no diagnosis code for POTS. There are ones for other heart rate or blood pressure issues, like the OH code you mentioned above, but there isn't one specifically for POTS. Rachel
  14. I am excited to announce that DINET's full length POTS documentary is now available on YouTube. We are not able to take new DVD orders at this time, but we do hope to make the documentary available on DVD again later on this year. Meanwhile, feel free to watch on YouTube and pass the link on to anyone who may appreciate it.
  15. Hi Emma, I hope you are having a good day!

  16. Love your new profile picture! Too fun!

    1. hilbiligrl

      hilbiligrl

      awe... thanks rachel!!!! i think keeping humor in my life helps me deal with this disease.... as it seems to be my number one coping mechanism. I am a huge cut up when im feeling good...... and well, we all know that laughter is the best medicine!!! :) thank you though... i do really like my pic... it is quite fun! i was making my daughters halloween costume (i love making homemade costumes and i am rather amazing at it!!!) so i was cutting up...

    2. Rachel

      Rachel

      I think you would be so much fun to hang out with in real life. If only you lived in Georgia!

      What did you make for your children for costumes? I made costumes for my children this past fall too. My son was Wall-E, and my daughter was a ladybug. It was lots of work, but so much fun to see them dressed up.

  17. You know you have POTS when...your children don't have a toy doctor's kit; they just borrow your real one. My children love to play with my blood pressure cuff, stethoscope, thermometer, and pulse oximeter, and they use empty IV saline flushes to give me "shots."
  18. I'm organizing a meet up for DINET members in the Atlanta area. Send me a message if you are interested! I'd like to meet some of you and chat in person!

  19. I get those symptoms also. I know what you mean about eyes not shifting quickly enough. Sometimes I will turn to look at something on the other side of the room, and my brain will tell my eyes to move, but the movement is slow and delayed. During that second that it takes my eyes to move the whole room looks like it is spinning even though I'm still. I get blurry vision from time to time, and it is just from dysautonomia. Sometimes my nervous system just can't keep up with focusing my eyes. It is especially hard if I am going back and forth between looking at something that is close and s
  20. Hi Gigi! Welcome to DINET!

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