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Supporting the Grogans

Winston-Salem, NC


Many people have asked over the past few years how they can help, so this is my attempt at communicating what would best help us at this time. As most know, I have suffered from significant health issues for many years. I have Dysautonomia/POTS, hypotension, EDS, MCAS and more. Unfortunately, things have continued to decline and have been further complicated. In August 2022 I was given 2 rounds of an IV iron brand that I was never supposed to receive again because it caused me to develop hypophosphatemia twice. I thought I was receiving a safer type of iron in 2022, but the doctor mistakenly gave me the same kind, injectafer, twice without my knowledge. Within hours of the second bag, I was admitted to the hospital for severe and persistant hypophosphatemia and eighteen months later, I have not fully recovered. We have sought help with local physicians, but no-one here has seen or treated this before. We even went to the Mayo Clinic in Minnesota last March for help and that doctor there had not seen. It has been eighteen months of trying to figure out how to fix things and I am still not well. I am on as many as 8-10 phosphorus pills a day and even have to set an alarm to wake up at night to take a dose. I have been having blood draws almost weekly for months. This is in addition to the many other health issues I continue to try and manage. Things are hard and I am exhausted. I can no longer drive, cook, clean or even wash my own hair consistantly. 95% of my time is spent in bed. I have also developed significant memory loss and cognitive impairment. Managing appointments and such is almost impossible for me. I am exhausted all the time and thinking is increasingly difficult. Cole, our families and many friends have provided amazing support for us over the years and I am grateful. I am hoping this page will make giving updates and communicating our needs easier for all. Cole is an amazing caregiver, a full-time caregiver, but caregiving is hard and it takes a toll. He has had his own health struggles this past year and I know being worn out all of the time played a roll in that. So, I am asking for help. I would like him to be able to get a bit more rest and not have to carry so much of the burden. A meal once twice a week for a bit would certainly give him a break. Transportation to appointments for me would also allow him to not miss so much work. My family is wonderful at helping, but I have constant appointments, sometimes more than one per day. My doctor is working on getting home health involved. Having a meal brought to the house once or twice a week for a bit would probably help Cole have a little break. If anyone likes to prep frozen meals, that would be helpful too, anything we can throw in the freezer for easy use later. We also need some help keeping the house clean, possibly laundry and I need help getting my hair washed. I tried going to the salon but I am just not strong enough for that right now, so if anyone has ideas on washing and maybe drying my hair here, I would love to hear. My goals each week are to make it to church, possibly small group and Cooper's games. If I can get out for a meal with family occasionally, that is wonderful. No-one wants to be stuck in the house all the time. If you see me out, please remember that being out doesn't mean I'm better. It does mean I am having a good enough day to be out though! Chronic illness is just that, chronic. The last thing that would be incredibly helpful is help with tasks that require executive function like scheduling appointments, communicating with healthcare people and such. If you are someone who has the time and wouldn't mind helping with this task, I would greatly appreciate it. I want to take a second to also say that if you are in a season where life is hard, please do not feel like you need to add to your burden right now. We can also use prayer and that is how you can help. Life is hard for so many and it almost feels wrong to ask for help. If you have read this ridiculously long post, thank you. I really appreciate it.

Special Notes

Food Allergies Shrimp Blue Cheese Aged or smoked foods Alcohol No visitors at this time please. Phone calls are really hard for me, but texts are ok. I may be slow to respond at times. Cole is happy to receive calls or texts.

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