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Bigskyfam

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Everything posted by Bigskyfam

  1. Bigskyfam
    Glad you have a diagnosis to get a direction! You are in good company
  2. Bigskyfam
    Recumbent bike 4 times a week. I started at 5 min now up to 9.
  3. Bigskyfam
    I moved from az to mt almost 4 years. I have the same thing happen. I peel like an onion.. At the house or out in town.fine one minute then 180 next minute
  4. Bigskyfam
    You guys rock! This forum has helped tremendously. I'm speechless and for those who know me. That says a lot. While I may not have a comment all the time I do read all posts and reflect on them. I hope to have more input as time goes along.
  5. Bigskyfam
    I found a big ol dose of reality here. As hard to hear as it was I was glad. My cardiologist here said hey we have a plan to get you better to work and life. She didn't know what my life entailed and how I've made small changes to keep my sanity. I needed someone positive but not unrealistic. Think I'm in better hands with my internist now. No meds just lifestyle changes... Going to try part days at work part time at end of month
  6. Bigskyfam
    Full recovery? Is there such a thing?
  7. Bigskyfam
    I was dx in nov, it seems that the more active you are the more you are prone to pots. It's hard being on the go and independent to needing help. I've been adjusting a lot but wonder short term or long. Is this it? The new norm? It seems meds are in place to alleviate sx but not eradicate them.
  8. Bigskyfam
    Agreed. My hair is shorter now than a year ago. I sit while drying hair and let it air dry a bit beforehand.
  9. Bigskyfam
    Ive never tried mestinon. But know the feeling of your heart feeling restrained on the beta blocker. I hope someone can post with advise. Hang in there
  10. Bigskyfam
    Im 35,I've had a tubal ligation and have taken ocp off and on since 18. I was diagnosed with menorrhagia last year, d &c in January, Mirena iud in march... Diagnosed with pots last month. Symptoms for a while but intensified September. Any experiences appreciated. We are struggling with pulling it to see if sx get better and starting ocp to manage menorrhagia
  11. Bigskyfam
    Jackie.. I'd be interested to get info on biofeedback. Seems that might help with my raynauds too
  12. Bigskyfam
    That's where I am at... Salt/ fluids/ compression/exercise... No meds at moment. Forrest gump approach. When I'm tired I rest, when I feel good I go out( with help of hubby) when I need help I ask for it. Day to day minute to minute sometimes
  13. Bigskyfam
    Hugs. Those days are not fun and so unpredictable. The Calvary will be there soon and we are here
  14. Bigskyfam
    Yay us!!!! We all benefit from this. Happy to share info/ideas. Just keeping warm, socks,gloves, warm rice bags. Could try channel blocker... I smiled and said no thanks.
  15. Bigskyfam
    Had a nice appt with a internal med doc who ..... Listened! Offered interest and also an I don't know when appropriate. Supports my non med ideals at moment. Drew more labs. Rechecking CBC. seems ready to research and collaborate On the eve of negative outside temps.....I showed him my hands/feet. Raynauds phenomenon
  16. Bigskyfam
    Gjensen please remind me if you've tried meds. I tried bb one day. Trying to make a good go with no meds. Found a doc that supports my feelings.if I did I might start with florinef
  17. Bigskyfam
    Angelina! What a great and horrifying story. Thanks for sharing. It's honest, humorous( after the fact). What are your sx of mcas? Did u have testing done?
  18. Bigskyfam
    Makes no sense good luck!!!
  19. Bigskyfam
    I tried propranalol for one day. Scary. I went into urgent care. They instructed me to get a Bp cuff. I track my Bp now. No meds for me at moment. Newly diagnosed
  20. Bigskyfam
    Agreed. Same feelings 1kate1
  21. Bigskyfam
    They think mine was viral onset due to ruling everything else out....I read epsteinbarr virus especially. If short lived pots... How long or short of a course I wonder
  22. Bigskyfam
    Amazing.
  23. Bigskyfam
    Thinking the holiday will be here strange how in some ways that can be easier.today I'm sitting on my sofa and my numbers are good after my morning v8. Online shopping maybe? Knotting scarves for gifts too. Any tips are appreciated with planning, organizing and coping. Much love to you guys!
  24. Bigskyfam
    Understand! I dropped my classes. One was online and I still hit snags. I wanted to be a teacher... I work in the medical field. Go figure, right? I want to give it a go...so many variables. I have kiddos and I feel if I give 100% to something I want it to be for them. Trying to think realistically.
  25. Bigskyfam
    I wish I could be monitored while trying these meds... I know I freak out about little things and on the flipside shrug off things that may be a big deal.
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