IV & Cheesburger.

 

Yesterday was round 2 of IVIG. It went well over all. I did have a headache side effect but hoping it dissipates over the next few days. (Traded one type of headache for another but this one isn't causing me brain damage and will likely go away in a few days.) I have just 2 more days left of steroids!! YAYY!! Months of these truly terrible drugs have tested me in ways I'd never dreamt of! It was supposed to be a few weeks and turned into a 3 month ordeal. And I would have another month minimal but, I started to loose my vision really bad. I still have 50% of my vision right now. (I lost about 50% I'd guess.) I did have a couple days of normal vision the other days so... I think it will improve. I am also able to breathe better as I come off steroids. Which has been a major struggle. Life has been hard these past few months. All I needed was a smudge if hope that all this crazy would improve. And I got that last week with IVIG. It's not a cure but it's definetly hope. And hope is a lot. 

Oh and when we IVIG we typically cheeseburger too. 

Keep hoping. Keep trying. Say your prayers.And remember who you are. Xoxo-Chelle 

In need of prayers

I am in need of those good prayers. I am really not doing okay and I haven't for a while. My heart hurts and my body is tapped out. I've never been so sick in my life. It's heartbreaking honestly. There won't be pictures for a while on here. This morning Doctor decided to taper my steroids much faster. The process is already extremely hard on my body. Now we are doing it twice as fast due to complications. I am not doing well. I have been struggling super bad. The worst ever in my life. I still can't Phathom how any of this has happened. My head still spins. My eyes/vision has started to be effected and that's not a good thing. I am Unrecognizable currently due to the steroid side effects...I have a severe case of moon face and a double chin and neck fat that I've named "hunchie". A horrific side effect of life saving medications that ironically have to be stopped slowly or you die (no cold turkies). I can't even look in the mirror and when I do I freak out. It's the worst feeling in the world to not be able to recognize your own face. My heart drops to my stomach and I feel queezy every single time. And I am covered in a  painful rash I've had for months due to the steroids. It's so painful every single day despite all I do to recover. They told me recovery would be more than hard on me, but I didn't know how hard this really would be. Between the really high steroid doses and the reactions to the brain injuries and illness itself. The process of a healing brain is quite a lot and there is quite a lot to recover and monitor. Time will only tell us what's permanent or temporary. My stomach has this past two weeks really started to shut down due to the steroid side effects and my feeding tube seems to have an infection. The nausea and gastritis is constant. The home health pharmacy has messed up for over a month and have submitted my IVIG to Insurance wrong and have made a mess of things. Also they have put off my treatments to heal me for a month now. That's a month of healing they took from me. I should hear today if I can get my IVIG this week. I pray I can get it as soon as possible I need it badly! I miss my life and I hope I can get it back again. It's truly the simple things in life guys! Just appreciate the simple things for they are truly the big things. Laugh with your families and enjoy it! This condition is ugly and awful and there is so much we won't know for quite a time. So please pray because we know those prayers work. One day at a time, we will heal our brokenness and learn the things trials teach us, & we will grow into the persons Heavenly Father intends us to be in faith. He is there. He is listening. So many times I have had the most clear answers to my prayers of words in front of my face literally saying "it will all work out." So now I am broken but I know things will be okay because Heavenly Father told me so. I don't know when and I don't know how but I have faith in the Lord that he always keeps his promises. That veil to Heaven is oh so thin and I have been blessed with the comfort of my grandma many times in the darkness of this whole literal nightmare. When I haven't known where I was or what year it is. When I've had to relearn important information. When I can't write or hold a spoon. When I couldn't wiggle my toes or move my Own hands, or move my legs. When I can't walk on my own. When I can't talk at all. When I talk funny. When my eyes can't see. When I break down in frusteration of it all. A humble angel always seems to be there at just the right moment to comfort my broken body and soul. It's such a blessing. I say almost daily, "I can't take another day of this." And then I wake up the next day and do it all over again. I'm being tested that's for sure but I pray for remission and I pray I can get off these steroids even though it's SO hard and makes you so incredibly sick. It's what my body needs and it's scary. We can do hard things. Even the things that seem impossible or unimaginable. Just take a deep breath and move forwards even when your heart is broken. It's worth it. You're worth it. (D&C 84:88 And whisk receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my spirit shall be in your hears, and mine angels round about you, to bear you up.") this scripture verse I hold near and dear to my heart. -Chelle