It's going to be okay.

Another sleepless night.  I don't know if this means the treatments to pull me out of coma brain are working, or if my body is just being its abnormal self.  I have had a lot of time to think lately. And I do know that it is going to be okay. God will heal me again. In his time, not mine. But I will be well again. It is gonna take a lot more work and a little more effort.

This popped up on my newsfeed after I said my prayers that were of gratitude tonight for all that I do have. 

This year has been a very trying year. I have felt emotions of all kinds. Brain injuries are no joke. Poor health care next to abuse is no joke. And I was handed both unfortunately this year. I have not talked a lot about this but when I almost went comatose and seized several times 24-7, the neurologists in the hospital called me crazy. First theory was that my husband was abusing me and next was my parents where playing Into "it". It referring to me being dramatic and crazy. I don't know how this could make a personal nearly die or go into a coma... my body literally shit itself down. The hospital neurologist told me this theory and called my neurologist and told him, "that he knew I was dying and did not want to deal with me." "She is too complicated " my neurologist by the grace of God knew what was wrong with me and begged them to run just one dose of Ivig and see how it would save me... something I had been on for nearly a year at one point. So it wasn't new to my body. I really had nothing to loose at this point in time. That hospital refused and sent me home to die. They knew..and they didn't even tell me, though I knew... I felt how terribly sick I was. I don't remeber majority of these times but they happened. They led my family to believe I was a wack job. Also lucky for me I had a supporting, loving family that did not buy into this ridiculous theory. My neurologist was not seeing patients at this time and was out of work but kept in contact with us due to the dier circumstances. So because he was not in practice it stalled me out to seek proper treatments faster. And I faded. He told me it would be one heck of a year. He said it would be gut wrenchingly hard. He had me on as much steroids that could be prescribed which led to awful side effects and temporary cushings syndrome. I gained a ton of weight, was unrecognizable at one point due to moon face, I was covered in sores that turned out to be from steroids, I lost a lot of hair, and most importantly I lost my brain. But that steroid saved my life... I temporarily lost pretty much all functions. I went non responsive for 30 minutes the end of January. For a time I looked exactly like I had a stroke. My right side didn't work.  I couldn't talk or hold a spoon to feed myself. I could not walk. In fact I still struggle to walk properly. The funny part is it's not recognizable to the blind eye. Some days I can't decide what year it is. Basic things are just not clear anymore.  I temmor, I hurt like never before.

 I can't even begin to explain the unimaginable year I've truly had. There just aren't enough words. My poor mother lost her job because of me needing her care and help. So I hid away, mostly to take time to heal but no one needed to see the true horrors of my reality. I have progressed with treatments but I'm still just not there and I may never be there again. Until Heavenly Father confirmed it to me tonight. On another sleepless night I lay awake and try to digest all of these things that happened this year. I try to refocus on the larger picture and what God would want from me to learn from this. Because after all that's why I am having to endure this. It is gonna be long and hard. As it alwaysseems.to be with these trials.of health. I fight though, and I can still advocate for myself. Something I have not felt able to do since all this hit. Heavenly Father can and will heal my broken brain. And I am still a smart girl. I may take a little longer and it may take a little more effort but I am not quitting this fight. I will walk in faith and my Heavenly Father will wall besides me the whole way. There is a journey ahead of me but I choose to look up not down. I have been grieving long enough now it is time for my voice to be heard. -Chelle

Comatose?

I wore a bathing suit. With Cushing's syndrome. Courage my friends. Courage. 

After plasma exchange in July, I had a few golden days. It cleared up the dangerous symptoms and I started thriving it seemed. Then I started sleeping all the time. Usually I can't sleep. Things just weren't bright anymore. And not depression, this was different. Turns out not to be scary but since my body almost went into a coma it has decided it likes the comatose world. So neurologist was treating me out of comatose world with a medication to waken me. I had to wean up it and some how I accidentally moved it out of my system. (By error). I have a very serious medication system and I removed the medication at some point a few weeks ago. I don't know when. I have no memory of it. And I didn't even realize I was missing it. Scary, my memory is these days. It seems every other word out of my mouth is incorrect too. Brain injuries simply suck. I feel incredibly stupid these days. God humbles me that's for sure. I thought I must not need the medication somce.i didn't notice it was gone...  but my mom thought maybe we should give it a try since lately I'm sleeping through my life. Which was seemingly ruining everything and taking my spark away for life. So we started it and it immediately helped.
I still have a ways to go but the last few days I feel like me again. Just a few days ago I was fully crushed wondering if I would ever feel good again.... if I'd ever feel like me again... I prayed long and hard and woke up from a nap realizing I was no longer taking a medication I apparently need... I felt guilty and ashamed for making such a mistake. I don't know that regularly people know how much work truly goes into 11 chronic illnesses. I'm human and things will happen. It's a lot to manage.  I'm still tired but my family has gotten me through the week and I got to live a little today at the lake with husband.

Things simply aren't the same but I am still me. That's hard to remember these days but I know God has a plan out there for me. I don't know what it is but he does. I have been praying not to run from pain and to embrace it. Less fear of the unknown more faith. I'm full of gratitude for the olive branch I received today. That's what today was an olive branch. Thanks Heavenly Father. Love, -Chelle
P.S my hair isn't falling out after months of falling out in clumps and is growing new baby hairs..I'm ecstatic!

Should update

I haven't posted in a bit and decided I should probabaly do an update. Things went up after my plasma exchange and then idk if my endometriosis knocked me down or what but I went from dancing around for the first time in a year to back in bed most days. I want to ephacise I am SO much better still! I really am basically just worn out and I keep getting headaches that we've always blamed on the IVIG. (Now my brain is not on fire the tall tale symptom of my autoimmune encephalitis.) Idk why I'm getting bad headaches. When you have 11 chronic conditions it gets a little blurry. So we have proceeded with IVIG ahaim.after a 3 week break. It was super rough on me. I got the side effects. We think its because when they do a plasma exchange they remove all your antibodies and IVIG floods you with donors antibodies... therefore it was like my first dose of ivig all over again. But my sweet hubby took good care of me the whole time. He made me soup and when I felt a but better later some popcorn with lots or butter and salt. To soak up that big IV I get lol.

He has been so helpful this past month with helping and

cooking dinners when I can't. Thankfully he knows how to dance in the rain. It is in some of the worst moments that he makes me laugh somehow and I realize we really were made for each other. I truly love him. He is my best friend and makes life worth living.
If things don't improve rapidly with this body of mine we will go back to the drawing board and tweak.

Today I'm putting my new feeding tube in and I'm so relieved my old one is so icky and I always worry it will fall out because its flat worn out.

Tummy isn't as happy these days. Gastroparesis is more obvious.  I am really focused on better nutrition and I am doing a lot of liquid meal replacments. You know my favorite all organic healing (not a bunch of chemicals) meal replacement drink is Orgain. GPers I have had a lot of the meal supplements and orgain doesn't make me sicker it makes me heal. Its at Walmart in the food section. I seemed to developed a small bowel blockage. We did find out in December, not only are my small Intestines and stomach paralyzed, but my bowels are as well. (This is why you do a full gastric emptying study if you're getting a GES do at least a 12 hour. You want to get a full picture of what's going on. It's all connected. You wouldn't go to the eye doctor and do an eye exam and glasses on just one eye. This is good info because now I know I am at risk for bowel obstructions and blocks so I can try avoid them with treatments and diets.)

 I am weaning off some of the meds my brain needed after all.the trauma earlier this year and time is going by... and I'm happy to announce that for the 1st time since steroids I have lost weight on the scale! My hair quit falling out in clumps. All this past week. It's so relieving! They told me I have as a result of heavy steroid use, that I have Cushings Syndrome for at least the next 9 months. Its been so hard mentally. I just morphed into a whole different person within two weeks. I'll keep those photos to myself for personal reasons but it is truly unbelievable what steroids can do to a body. I follow the truth 369 an awareness for childhood cancer. I don't know why besides I know how important awareness is... not just for things I have but for all things especially childhood ones! over the years I've seen photos of sweet little looking so puffy from the steroids and I now know how miserable it is and my heart just aches more for these babes! I pray hard for them all! If there is anything I've learned this year is never judge someone else for anything. We simply don't know what or why someone is in a circumstance they may be in. There is so much we doing know. We should merely walk in Christ's love. It's hard I know when you're busy out and about and people can be cranky or rude.... but don't let someone else negative take away your bright and goodness. I'm talking to myself when I say this but we should all strive to soften our hearts in today's horrid world we live. That's what this blog is it's notall awareness and updates. It is about spreading light in a dark world. The only light of our heavenly father. Its contagious.  Just keep doing the best you can do and know ththe savior will walk  besides you.-Chelle