Today I stayed home from work because I have caught a stomach bug. I am sure it will be gone soon, might just take me a little longer to kick it than the average person. I got very dizzy at work Tuesday and began vomiting. I then took my BP and it was on the high side. So I came home early that day, took my BP med early with a phenergran and went to bed. I stayed there until I had to get Mad ready for school, dropped her off and returned to bed.
Anyway, why laying there today I kept thinking of the conference and the kids and their families. I feel like there is so much more to be done. In the past, I was really sick myself so I didn't have a lot of extra "brain time" to take in a lot of the Foundations website. But now I feel better and am ready to help in any way I can. In my professional life I work with children and I feel like God is calling me to take my skills and help the children with aHUS. I am not sure how or what I can do from Arkansas but I know God has a plan. So I am praying about that, leading me in the right direction. It may be as simple as being a mentor to these younger children or their families. Not sure what God has in mind yet but I am listening with an open heart. I feel like I got off easy compared to all of the sweet Hyde's out there. I just feel compelled to do something, anything to help these families and the future adults who will have to deal with aHUS. If anyone out there ever has questions or you just want to vent just call me. I’m not a professional in the field of nephrology but I am a professional in the first hand experience of aHUS. If I had not had Alyssa to listen to me during the bad times and my family and friends here at home, I wouldn't be where I am today. My email is jillnziegler@yahoo.com I'll give you my cell # and we will get through this together. But in the meantime, God will lead me down the right path to help others. God Bless you all!!!!
Hi Jill,
ReplyDeleteI have been going through your blog. Really amazing! And yes, you are truly fortunate to get access to the wonder drug. This is a distant dream for people like me in whose country Soliris isnnot even available. Even if it does become availabe the cost is going to be prohibitively high for me to even consider using it. I and many like me in India pay all our expenses out of pocket.
So you should really treasure the opportunity you've been given and look after the kidney well to make sure nothing goes wrong. Take all your meds in time. Look for any warning signs - of course, hope there aren't any - and be happy!
Take care.
Kamal