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Bigskyfam

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Everything posted by Bigskyfam

  1. On a 60 day trial period. Second week of working 4 days straight? HRof 170. Boss(doc) sent me to er. Overnight stay. 2 bags of fluid. Home. Still swimming. Just keep swimming
  2. I'm so sorry I didn't see this in time. I try to do the main course.. Coca cola ham. Hubby did the fixings. I did the desserts because I could stretch it out a few days.tackling what I could when I could. We used festive paper plates how were your holidays?
  3. Ooh yeah. Sun exposure too. No betablocker though
  4. I do at times. Mainly chest neck sometimes tummy and legs. Not sure why. It's not consistent
  5. Agreed with you all. I had a flare at age 35... Flurries of symptoms since puberty that never amounted to testing or diagnosis.
  6. First off... hello! What a great historian you are! I think you'll feel at home here. I've been here for over a year. Autumn gets a lot of us. I am still searching for causes/ treatments. I've been dx with pots by TTT. I've seen a specialist... Hard go geographically... And am being treated by a d.o at the moment. Rougher day today, so I'll post more later on. Love your pic.
  7. So to date I've had a TTT to confirm pots, an echo to confirm a mild aortic root dilation and now a vit d deficiency... All other labs good... Haven't had magnesium checked... My ehlors danlos testing is still pending. I found a Fam prac doc a d.o who uncovered the last 2 diagnosis... Progress is progress. We have to be proactive!!! Here's to a happy healthier new year.
  8. Nicely done. I'm so over folks saying take the day off from advocacy... Yeah just like I can take a day off from pots... This was what I needed to get me through
  9. Get one if you can. Great present to myself. Shoulda got it last year.
  10. Thank you in looked into it. I feel it's reasonable accommodations because even though I'm gone at times my work gets caught up quick
  11. I broke down and used the wheelchair in target Hard but I didn't want to pass out. Rough day. Think im starting to get sick
  12. I have confirmed raynouds as well
  13. Thanks guys for the info. Here I am in my upper 30s trying. To figure it out. Decided for genetic testing as I have kiddos. They show a few symtoms of pots and eds. Feels like nailing jello to the wall. Ugh
  14. I'm on other side of country. I will look into it! Thanks for the info. I know I can always count on you for good vibes and info!!!
  15. Thx for the reply. I have pots... Awaiting genetic testing for eds... My echo showed borderline last year and mild dilation this year. Wearing my 30 day holter. I think I finally found a doc who is ready to investigate. Glad I switched docs. No stone left unturned I think is the expression
  16. Hello friends. Anyone with pots and a cardiac echo that showed aortic root dilation? And if so, do you have eds?
  17. Less than 50. I'm typing up my thoughts this weekend. Up and trying to make it in today. I have doc appt in afternoon. So there goes perfect attendance for the week
  18. Second write up today.... Attendance. Not being there four full days a week. Also disregarded my statement of out of line comments regarding my health by my supervisor. Laying down trying to regroup
  19. I use it. Better with it than table salt. Nice taste too.
  20. I find I need to balance my protein carbs sugar and eat small and frequent.
  21. Understand. I'll post more when I'm less foggy Rough week after a better summer. My hubby's friends brought their kids over last night... Ages 2/4. My hubby was keeping them occupied. My youngest is 7. I've been diagnosed for a year. Was hard keeping up with them even though I was sitting most if the time I had a thought and shared it with my hubby What am I going to do if I'm ever a grandparent? I don't see it happening soon but we have 5 kids This made me sad Emotional component is so very tough and touchy I'm glad I've got support with you all Even though I may not reply or post often I always read
  22. Joint hypermobilty syndrome...not sure about the b
  23. I was dx last year After a major bedbound flare. I was working and going to school to be a teacher. I dropped my courses. Went to cardiac rehab started working a day a week up to 2.5... Then changed from back office medical assistant to 4 days a week as a medical record clerk. Sitting more has helped but I'm still symptomatic my quality of life is better. Not quite what I wanted to do but I'm able to work at the moment Congrats on your diagnosis, sounds weird to say that but now you have a direction. Lifestyle changes really helped me.
  24. Positive thoughts your way. I need dental work done.. Scared to do it. I agree when it rains it pours... But also it freezes and thaws. I'm in the nw under 6 inches if snow and -15f temps this weekend. Hang in there!!!
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