In My Cacoon. January - Update.

**prior to January's hospital stay** I've been in my Cacoon for a while now. While the rain storm keeps me up, and my knee remains locked and cramped thanks to side effects of taking harsh steroids. I lay with my bunny ear eye mask on. I figure since my hands are able to move and type, and I can think some at the moment. Well I'll type...I'm not well. 

This is something I have NEVER  done in my life, but there simply hasn't been another way to go through this continuing journey. It is a nightmare honestly. A few weeks ago I was unofficially told I likely have an Autoimmune Disease that is neurological. It's called "anti NMDA receptor Ecephelitis." (The Netflix movie "Brain on Fire". Is this condition.) My own body making antibodies is attacking my brain. I've been super sick since being airvaced this past August.  (with the CFS leak, brain bleed, & Menegitis.) They then decided to stop the IVIG treatment I was currently on at the time. It was the only change in treatments so it seemed logical to stop and see what happened.  Now we know was a bad move and was likely holding this beast at bay a little more. I am on extremely high doses of steroids, and even on more then one form of IV steroids. Then to top it off I am on an anti rejection medication to weaken my immune system. This is barely working and I am upside down currently in this war. I am at a literal war and I can honestly say I have never felt so incredibly ill in my life. They are trying to start plasma exchanges as well but it's proving difficult. I wanted to share this while I could as my whole body is effected and some times I can't even talk or move. I can't use my hands either sometimes. Into through katonic spells and all types of things that I don't remember after. I start pacing and no one can help it. My brain is literally on fire and steroids are the only slightest releif. It's a sick that is completely unimaginable. Whole body. My whole body just has wanted to shut down as it has. It won't even let me sleep for longer then an hour or so at a time and I get 1-3 hours of sleep a 24 hour period. For weeks I slept one hour a day only. (Yes I have "moon face" from steroids.)  

I continue the same and worsened in the hospital. I have a severe rash that is a side effect of the strong steroids I am on. And instead I got called crazy.  I landed myself in the ICU. I have no new news yet. I tested for an Antibody back in August but I was not told (even with asking) until I saw the GI doc. (Last month.) That's a sign of me having a neurological auto immune condition. They did more tests but it will take weeks to come in. I will be following up with my Neurlogist. We will start IVIG as fast as possible. We are tapering of the loads of steroids for now, and a plasma exchange may have to be done. I have had an extreme allergic reaction to the steroids I have been taking. They were changing the type now while I taper off and hopefully I quit with this full body allergy reaction. (That's the type of hospital care I received and it was very poor.) I am back with my Neurogist whom has been changing offices these past few weeks. Of course it's more difficult but,

He is trying to help me despite the trials. My diagnosis will be played out and monitored on how it goes with treatments.  I don't want to get into details today of how I feel symptomatically. It's just too much. All I can say is I've never been so sick in my whole life. And this time I am actually afraid of it all.  But I try hard with my faith and Heavenly Fathers love for us. There is a balm in Gilead. I have such a long road ahead of me. There are few smiles that have occurred as my face has been neurologically effected by this. So I'll share the ones I have. I got very much sicker after this time frame but I don't want to share details yet. 

This for this fight will be long. I wanted to share my testimony that I know the Church of Jesus Christ is the true church and he loves us each and every one of us. Especially through times of trouble. That the veil to heaven is so completely thin and bright that we can feel it here on earth. Grandma has been hanging out with me and getting me through my worse times, and that has been such a beautifully blessed piece into this. Angels are here on earth with us to bear is up and is God. -amen.  But the one thing I know is this beastly condtion has a lower probability of coming back after its gone. I'm in for the fight of my life right now and I couldn't have a better husband in the world. He is my rock and my bestie.

I love him so much! I hope he knows how amazing he truly is!  And my Mother is the best Mom alive. She has gone to the ends of the oceans for me time and time again. She has a heart of pure gold and I am so blessed to have her as my mother. She is Superwoman every single day. But thinks she is not. But she is, she is special.  Her love and compassion knows no ends. She is my inspiration in this life of what a Mother really is and what a true friend is. What faith and fighting truly is. She puts her shoulder to the wheel daily no matter what and she is the bravest-sweetest soul. I love you mom. Thank you for all you do for me. We just got news, I start IVIG this week via HomeHealth. And I am getting my new steroids so I can taper down the next month with out the world's worst allergy reaction. So blessed! Our prayers have been answered today. 

-Chelle