Friday, January 12, 2018
Monday, January 8, 2018
I hope everyone was able to enjoy their holidays! Now that the Holiday season is over I thought I'd update again.
Saturday, December 23, 2017
Friday, December 15, 2017
Not one but two donors are matching 150k this year in research. My heart needed that after this scary, frusterating, out of nowhere, flare up. That's the name of autonomic dysfunction. It is a constant battle and then some days it is down right terrifying! Praying I can keep pain levels lowered and mast cell issues can improve (all autonomic dysfunction). There have been some ups lately... Despite a big hospitalization, being in so much pain my body actually snapped and had to be sedated Multipule times... Many ER and a virus a.k.a a Dysautobomia disaster, Multipule doctor visits... An oh so much more. I managed to get an A in my class! Little victories to me are huge and I am proud! I could have easily quit so many times but Ipushed forwards instead in faith in God's plan.
Monday, November 27, 2017
Question: Did the IVIG infusions break my migraine cycle of over three weeks? Answer: YES! 🙌. I did get a headache for a little while but i have been the most headache free I've been in weeks. It was the only thing that stopped any of it. I have had a headache free day! Eek! Now I am not totally feeling fine. I am still really weak and my POTS is revved up. Standing puts my heart rate through the roof so I'm like running a marathon no matter what I do. But I am clearly doing much better. Now if we can just keep things going this way... Hopefully I will get back on my feet again and recover. I have to rebuild strength for sure. It takes me overnight it seems to loose months of hard work. Now my poor GI motility really needs to improve. Neurological Gastroparesis likes to change course with neurological condition that causes it. (Dysautonomia)... (Plus in it's defense I ate crap food for two weeks on those massive steroids. Never in my life have I had huger like that! I was starving and thinking of my next meal in the middle of a meal 😆! The girl who doesn't eat. Ate. My poor tummy deserves to be upset at me. After all it is paralyzed and I ate foods I can't digest for two weeks straight. It is very flared. Oh crazy steroid side effects!) hoping my poor tummy goes down and quits hurting so severely. I am on mushy liquid diet. Looks like a full liquid diet will be next. Just my update. I am so blessed and happy the IVIG clearly helped me. I don't know what this exactly means... But it means I have some form of a treatment that is not just masking symptoms... It is treating something that's wrong in my body. I have always felt like my immune system just runs rapid and starts attacking me. Since day one ten years ago basically I've said this. And here we are finding my cases could very well be caused my autoimmunity. Who would have thunk! The cool thing is IVIG builds the immune system up instead of pulling it down. Makin me stronger not weaker. Heal little body heal! Lots of love. Never loose hope & though you have faith may you believe in Heavenly Father's plan for you. May you realize the lessons in the journeys and find joy along the way. Even in the trenches there is peace and joy. Sometimes you have to look a lot harder than others. Have faith in God's plan -Chelle