Updates.

This past week has been a tough one. I am still on massive doses of steroids. I have severe side effects and allergies to one. That one we discontinued and replaced with another one that works for my brain on fire symptom. My eyes are really effected now and it's a concern, among many other severities that steroids give, moon face, leg cramps, severe nausea, the list could go on and on. They upped my taper so I can get off a lot sooner, which says how bad my body is handling them. I call them "my poison pills" becau that's exactly what they are! They are awful! We've been trying to get my IVIG treatments continued but that's been a train wreck of it's own. We pray the IVIG can get approved and my HomeHealth can come admistering it this week. But truly who knows how long the insurance process will drag out. I may also be doing a plasma exchange out of town. That's a whole thing of its own. We have a war and I don't know if I am winning or not. I just know I am super sick. But God has a plan and I have full faith in that. We have been through hard times before, maybe not this hard or scary but nonetheless. Having a rash for over a month is painful and I hope it goes away soon! It's miserable not to recvogning yourself in the mirror. Between the steroids and the rash, it's just a lot to process some days. Recovery is long and horridly slow. I think the goal is to practically kill you over to stomp out the bad antibodies. I can't just let antibodies attack my brain. It's such a miracle to me I didn't go into a coma like most do. I was previously treating other autoimmune conditions I have and so that protects me some. Things do get scary and have gotten scary. I have neurological episodes and I have gone non communicative to a neurologist. I have memory loss and speech issues. Sometimes I can't even hold a spoon or let alone my hands. This is a mean ugly condition and we only know as we roll... So we see what happens and what to do that works or doesn't. It's called Anti-NMDA Autoimmune encephalitis. I found out about it clicking through channels on a interview. The girl on the show simply said "my brain was on fire all the time." And I was like that's what I always have but it gets called a migraine. So I listened & thought, "no." But did continue care with my Neurologist in August. He ran a very special blood test looking for signs of an "neurological autoimmune disease" well, 6 months later I found out I had tested for an antibody in August during my hospital stay when I was airvaced to Mayo. They did the tests because my doctor had already ordered them. (At this point I was on an immense supression therapy and IVIG. So for me to have tested was a big deal.) I found out in December I think from a GI that I had this antibody and needed to restart IVIG. Then I got very sick and here we are. Idk how I got here. But I know there is a reason and though it's hard and will be hard for a long time. Recovery is going to and is super hard, but we will beat this! If I keep it in remission for 2yrs I likely will not fall out of remission again is my understanding. There is so much I don't know now and won't for a time. The movie on Netflix is a movie but it is called "Brain on Fire." Here is a link that's very easy to understand. . https://www.med.upenn.edu/autoimmuneneurology/nmdar-encephalitis.html I pray I get better treatments tailored to my case and that great healing will occur. I had a blessing and oh how much it has helped! You're never alone. He is always there & Heavenly Father always keeps his promises! Even when your soul hurts, & this life seems too bleak, there are blessings growing inside & around you calling you home to your heavenly fathe and his divine love and plan for you. Better days will come once again. Lessons will be learned and pages will be turned for the better if we choose. -Chelle

Wrecker found his new favorite spot. Stinker! 

I would say easily opening my scriptures every morning has made a difference. Such a small thing with so much strength! -Chelle