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About Bigskyfam

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  • Birthday April 10

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  1. Welcome! 1. Finding a good primary doc who thinks outside the box and can refer you to a specialist and is willing to communicate with specialist. 2. All speculation after 3 yrs, but I have eds. The year I had my initial pots flare, I had 3 surgeries and hormone trials and flu vaccine( found out I was allergic to eggs) 3. I did have success with cardiac rehab which got me back to work... Was unable to keep up both. Taking at least 2-3 l of h20 per day and cutting out allergy triggers. Salt increase when bp runs low and pacing myself.
  2. I'm wearing a holter monitor at the moment... Saturday ... Urge to urinate and racing heart etc... Cardio called this am 167. Sinus tachy. Was sitting in wheelchair whole time other than in bathroom. I did wheel myself into bathroom. Slug the rest of the day. i love being able to use search aspect on dinet. User friendly!
  3. I worked in med field always got mine... Day after my flu shot in 2013... I had my first pots crash. I never did well after the flu shot but never had the flu. Fast forward two years with new allergy type reactions( mast cell) allergy test revealed allergy to egg ... So no vaccine for this girl. I think this was addressed in a newsletter last year
  4. Decaf sugar free chai when my HR is sluggish. I do consume chocolate. Soda and coffee free since 2013
  5. We moved to a new place 2012.I had my first pots crash fall 2013, we found mold downstairs in our basement summer 2014 and moved into a newer rental with ac. Is it the cause? Prob not, but I think it's a puzzle piece to my health
  6. My doc says it's common for those with autoimmune issues.
  7. 17 in dec... 24 today after 3 mos of 2000IU
  8. First migraine tonight. After a normal ct they concocted a variety of meds. Needless to say... I walked in with a migraine developed bad pots symptoms then home to sleep it off. What is intriguing to me is my joint pain is gone. They have me 1 anti nausea, 1 pain, 1 anti inflammatory and a corticoid steroid. Tonight my vitals are norm finally after being tacky and I can think normally. What a day
  9. Slow capillary response points to eds
  10. I switched from back office to front working 4days a week most weeks
  11. Elevated bed by 6 inches. Sleep on right fetal position
  12. I have 5kids 18,17,16,15,6. Dx with pots fall 2013. My hubby thinks it started with my last pregnancy. Was a difficult pregnancy. Struggled with gaining weight, gestational diabetes, preterm labor, csection and anemia afterward due to bloodloss. Bedridden for 1-2 months during dx. Hard for me, my Kids and hubby. Back and forth to school, activities and such. My hubby was mr mom for a while.i have 2 kids, hubby had two and we had 1 together. Would've loved to have more or even adopt. But now, I don't see it as an option. I'm able to drive, do housework at a slow pace and go to limited places.i
  13. I may have to make them festive for the holidays.lol thanks for the heads up guys!!!
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