Kinda Camping

As Husband's work camping trip came up I found myself growing nervous. First off I've never been camping. And second off...  have you met my body? I also haven't done any socializing in months and worried I lost my social skill and would come off super awkward. What if I moved or talked funny? What if I got heat intolerance and had presyncope? What  if my pain got out of control? What if I got cyclic vomiting? All the what if's took over  my thoughts.  But I pushed myself for a few hours and sitting by the camp fire I realized that in this very moment I could still have real life moments again. I can still have normalcy in my own life. I'm not fully
Broken anymore and I'm still me.  Sure, there  may be extra  planning and medications. There may be paybacks the next day. Things  may look different while I do them. But I can still have moments in life that are normal. What a blessing that insight is to have gained after this storms blown through. -Chelle

A Winter May Day. Recovery.

 Today is a very dreary, windy,  rainy/snowy day. This makes my body ache like never before and keeps me in bed. Or on the sofa typically where I am

not as boxed up and bundled up with the "polar bear"

Blanket my husband wrapped me up in.

He is pretty sweet. Also I can look out the Windows, use Netflix, the new Nintendo Switch,

My coloring books, and sometimes my kindle for E-books.

 Most importantly it's right by the kitchen of course!

This morning we woke up with my five alarms set for a doctors appointment for a medication adjustment. It was rough for both of us to get out of our warmed bed and out in the rain/snow.

Rain boots saved my feet at least, I was totally drenched walking into the clinic. Things are going well but they are still so hard. I just keep telling my family I feel like I  just woke up in February in a whole different body and I don't know how to work this one. It's physically different.

(But making progress with the puffiness.) My movements are different.

Sometimes talking is even different. Sometimes my

Own brain function is different. Sometimes I break down and cry for literally no reason.

That's part of Healing from autoimmune Encephalitis. My body has two modes. Sleep 16 plus hours per day with being woken up or no sleep at all for days.

This stinks! I will start a new medication for

This  Monday. The neurologist is using this medicine that's typically used for narcolepsy to

Help train my brain to wake up. It's being lazy and

Confused essentially. But the side effects are scary I won't lie. So let's pray they don't happen. 

Oh this is my couch. The cover is currently in the wash. I was very ill two nights ago and Mr. Wreckee got upset & peed on our couch!! So we have been diligently cleaning the spot the size of Texas up. Thankfully the cushion was covered in a plastic under the cover and thankfully the cover comes off and can be washed!! Phew! Would it be weird if I covered my whole couch on plastic like Marie on, "Everybody Loves Raymond"??? 

My dog literally never pees in the house and bamb!

So naughty little doggie!

My regime to recovery is to try to destress. And of course faith and hope  in the Savior's plan for me.  I also am trying to relearn/retrain the brain.

I can write but it's like Chinese and you can't read it typically. For some reason it also has to be very big. So I've taken up coloring books to help hopefully restore and reconnect this brain of mine. I'm 26 years old struggling to stay in the lines.

I'm also reading books again.

I ride my stationary bike and have just started playing "Just Dance" with Husband last week. It's hard because I've actually lost a lot of motor skills. I've lost my full ability to dance.

And if you know me you know I've always been a dancer.

This has been heart crushing to see and feel the awkward movements no matter how hard I try. I just simply feel like I've lost parts of me.

Hopefully they come back with time. As I write this I am on my couch lying down.

I looked down and for some reason I'm wiggling my

Toes.

There was a time not long ago I couldn't wiggle my toes or move my hands.

I couldn't hold a spoon or anything.

I couldn't walk without help. 

The important part is to remember just how far I've come these past few months.

Sure the better I get the more issues I find.

More lost knowledge or functions

But I don't give up and that's 50% of it.

So I'll color, I'll cry, & I'll keep moving on. Life is precious and I'm not going to waste it in self pitty. Bad days come but they also pass and good days replace them.

It may be raining today but there's always a chance for sunshine tomorrow.

-Chelle 

If this was my last, I'd have a lot to say.

Since I have not written in SO long I'm starting from scratch explaining this past year.
I also have no memory of what I have or have not written. So please bare with me!
If you would like to kinda learn more there is a movie on Netflix that's a true story of a girl with Anti- NMDA Autoimmune encephalitis. She also has a book.https://m.youtube.com/watch?v=VZn6G0M9wNs

Yesterday I saw Neurology. He confirmed again  that I do have Autoimmune Encephalitis as we already know AE  is a new one. . (Along with the strew of other medical issues i.e. POTS/Dysautonomia, Elhers-Danlos Syndrome, Mast Cell Dysfunction, Gastroparesis, Sjogren's Syndrome, Lichen Planus, Small Fiber Neuropathy, Asthma, Endometriosis. & if I gain another diagnosis I might go loopy!! Wink wink) It seems from what happened this past year is,  I went from remission to one big flare up. My immune system runs the show and it's very faulty. This time my brain receptors where on the attack. And I almost died due to this. I was airvaced a few times, ambulanced. I was deemed 'extremely complex' by nearly every doctor I saw. And due to this I was called crazy. A lot. Sadly my care was not existent a lot of the time. My immune system luckily was semi suppressed due to a medication I was taking for another condtion I have. This really saved me.  
 But it all started with a CFS leak. This is something I am prone to due to my collagen disorder. This caused a brain bleed and the spinal tap also showed I had Asystemic Menegitis (meaning not contagious and it's also a side effect from IVIG treatments.) While in this hospital stay, they preformed about every test under the sun. Apparently including an antibody test that shows I have Anti-NMDA Auntoimmune encephalitis. However sadly, I was never notified. So I was sent home to recover where for the next few months I suffered from the absolute worst headache known to man. I always said it felt like my brain was on fire. Doctors called it a migraine. The headache specialist referred me to the guru of the country out of state to review my case for an underlying condition to my CFS leaking.  (This never actually ended up happening and I have not gone there as of yet.) Also at that time I continued having about 8 in total spinal epidural blood patches. I was informed I had a very hard case of a CFS leak and that they did not think they could fix it. They told me half my spine dura was missing. (Whatever that means) and they encouraged for me to have  more spinal epidurals to  repair or "patch" this missing dura with my own blood. Then after more time passed, I was called a drug seeker & an attention seeker. These doctors bullied me and lured me into a drug rehabilitation center. They told me I was having another epidural blood patch and instead to my major suprise I was met by a psychiatrists. Who not only worked the program but invented it and successfully  set it up across the country. Luckily for me she saw I was not some crazy drug addict and that I did not belong there. She was rather upset, apologized, & sent me on my way.

As time passed  I only kept getting sicker. In about a weeks time.  I started looking as if I had a stroke all the time. My right side would numb or get weak. And my right leg would turn in and my foot would lock .I dragged my right side to walk. Then I started seizuring and this got worse rapidly. They became regular several times per day. For a month I did not sleep. No dramatics. I would pace and clean my house all night long every single night. Then I started having hallucinations and paranoia. We can laugh about this now. I believed everyone in my life was against me. They all where setting me up. They all thought I was crazy. So my family was going to get rid of me send me to a deserted island. They also were poisoning me and putting things in my water to make me thirsty and drink more of the non existent poison. I would tell them, "I was not stupid and that I knew their plans". I was really mad and serious. I even would get mad at my dog and I believed that he was micro-chipped. He was spying on me and telling my family information about me.  Yes I believed my dog could talk. I would chastise him over this and call him a trader. I would text my mom and accuse her of stealing my lotion. (Idk why lotion of all things.) then I started accusing my family of stealing all of my belongings. Even though none of them where missing. I would tell them "it's so stupid of you to steal from me, and don't think I don't know about it." "Steal from someone with fancier stuff" "they were bad crooks" I would get upset at my husband for saying things he never said. And one day I even hallucntinated my neighbor broke into my house in the middle of the day. Oddly she threw my dog in the house. So that was interesting. We can laugh at these now. I'm sure I was hard to live with. I required 24/7 monitorization. 

In January things went from being really strange to really bad (now I don't remember but this is what ice been told.) . The seizures only worsened and I would seize in the middle of the nights.  I would quit communicating. I couldn't talk or walk at times but it was spiraling. I couldn't even open or control my eyes. My hands I couldn't use. I went fully catatonic. This is when my neurologist sent me to a hospital that was strictly for Neurology. My Neurologist gave my family direct details of what to tell these doctors. I was possibly going comatose if I didn't receive help and fast. I continued with the stroke, seizures, Catalonia, and of course hallucinations/paranoia. I broke out in a severe rash and I had fevers that would not budge. I was in the ICU. Now I don't remember the month of January and parts of Decemeber are gone. I do have permanent memory loss. I do remember just a few things from my January hospitalization that was a nightmare. Like super tiny nothing "clips" of time. A few seconds or so... . They as normal for autoimmune encephalitis deemed me psychotic . I was psychotic. My mom argued that didn't explain the fevers or rashing. Oh and the continuous seizing? I was withering away and getting stuck in my own body I will never forget how painful it was though. The pieces I do remember. . I did not know where I was continuously, I didn't know what year it was. They continued pumping me full of extremely high doses of steroids. My neurologist jokes that if my brain being under attack didn't make me loose it surely that amount of steroids would. But days passed with no improvements. The team spoke with my neurologist and made it crystal clear they did not want me there. They sent me home to die essentially. I guess before I left one of the attending a came upstairs. He had ran out of fear of missing me. I guess he was the one who sat with me and witnessed when I went unresponsive. He tried to rally me out of it I guess but I didn't budge. Eventually he hurt me to get me to come out of it. But this nice Doctor ran all the way up several flights of stairs to tell me to my face he knew I wasn't crazy and to ignore the ones who called me this. He told me I wa really sick and he believed me. Keep  trying. (His hands were tied obviously.) I told my Kim this doctor had seen my phone ring. The screen showed a wedding photo just two months before. I saw him state at it with big eyes and look back at me. Then back to the phone. He saw my "normal". I think looking back that's what truly helped him see that I was truly very sick. I was released feeling the most beaten up ever . But my own neurologist knew what was wrong after several phone calls, videos, face times, & emails with my husband and mother. So he started the process to get me on IVIG. He wanted to also do plasmapheresis but was literally in the middle of moving to his own new practice. He wasn't even seeing patients at this time but he was seeing me. Saving life literally.

Dose number one of IVIG was life changing at this time. My brain has not been on fire since. It didn't cure me but it helped. It's been a lot of time. A lot of horrific steroid side effects. They cleared out my immune system so badly I'm still to this day fighting off an infection I've had for months. Last Month the steroids gave me a extreme case of phnemonia that landed me back into hospital. I had phnemonia in all 4 out of 5 lobes of the lungs. And this was after stopping the steroids. (They had to nearly kill me to save me ironoically. It truly got dangerous.) I now have Cushing's syndrome for now and it's going to take time for these awful side effects to go away. This has been very hard for me. Gaining weight like this. Simply hard.

 I saw neurology yesterday and they think for the shape I'm in I am doing good (knock on wood).  He says he thinks that I very well could go back into remission even after all of what has happened to me. (Not any time soon. I have another year.) If anything now, we know for sure I have autoimmunity that's neurological. That gives us more power to treat it all. With time the speech, & discordination of this mangled up body should heal. I still can not write (physically) properly and weirdly I have to close my eyes to make it. BUT I can hold a pen! I can smile! I can talk! And I don't think anyone is trying to kidnap me! I have about a year for those brain  tissues to re-heal. I sleep way too much so they have to start training my brain to literally wake up. It's hard. Things hurt. A lot. Some days are better then others. It can be quite mentally draining but that's also because my brain is healing from two brian injuries. I miss my memory the most. Short term and long term. Doctors say time is the most important factor & tweaking symptoms. I'm working hard to heal. I finally will leave the house. I was too embarrassed. I still don't quite feel like me but I can see I am getting there. I'm one of those lucky ones. My family supported me and knew I was not crazy. They knew that I was really really sick. My husbands the best husband on earth and though life was totally flipped upside down he still loves and supports me daily. I find myself relearning the simple things and that's what we will continue to do is learn pushing forward.

 There was a time I was confused why God would let me hit remission for a year only to get sicker then ever before & this time seriously ill where fatality was too close. I had just gotten married. It didn't make sense. But as time has gone on... It doesn't have to make sense. Maybe I was well so I could meet my husband and get married. So I could say good bye to my grandma before she passed. Maybe, it's so I can fight this round with faith that God heals and remission is fully possible once   more. Patience is not my strong suit and maybe that's why. I don't know but I do know we have to   live our lives to the best of our abilities. Sometimes the best we can do is hide out for a while and wait for the storms to pass. I did the whole cocoon thing for the first time. Partially because I was the walking dead, ashamed of how I looked, mostly because I had no immune system so I couldn't come into contact with any one due to germies. We're gonna keep fighting though. I've had my Angels  by my side the whole way & Heavenly Father never leaves us alone. He will let the storms come and go but he is always there guiding us. I don't know why I am so sick in his life. But it does bless me as hard as it is. And as much as it challenges me. I'm still pretty ill but everyday I think I get a little bit better. Now I just need to remember to live because, I've been given a second chance. Again. Hilary Week's song "beautiful heartbreak" was my mantra through all those hard years battling Dysautonmia and bad Gastropareis. Now Hilary has my back once more. Her song "Last Song" is my new mantra. Yesterday I realized, writing this blog was some how God's work for me. I quit it & I lost a part of me.  It's a part of my soul & I know I am meant to do this. I needed time to heal. I could not have even probably put a sentence together the past few months but I am blessed to be able to once more.
I want to live not just righteously in the eyes of the lord but I want to do his work here on earth. This song connects me to my Heavenly Father  each time I hear it. And that's my new thing. So, as the song goes,            
" If this was the last time 
I could write the words on my mind
Looking back on my life
I know what I'd say

I'd sing about reaching for the stars and keeping of it on the ground
I'd sing about living in the moment and making every second count
I'd tell you 'bout the moments when I fell apart
And I thought my heart would break. 

But more than anything I'd sing about His grace"  

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

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

Today I feel so blessed as I found some good news out. I have nicknamed my self "pop the pig" off the kid's game. These steroids make me retain water very badly, so far. My knees even swell up so badly I can't walk. I call myself "Rollie Pollie Oillie". Changing steroids will take time and the old steroids I was allergic to has to work its way out of my system still. It takes about 2 months or so. But the new steroids IV do help me feel better to the source of the issues. The rash is back and forth. I did get some sleep though. The miserable side effect  leg cramps finally slowed down for a night. I will be glad to continue to taper off all thee nasty steroids and hopefully it will put some life back into me. These things are harsh at these levels! Awaiting IVIG to be finished setting up. Then that's next is to get back on that. It does take 6-12 months to fully load into the system. I won't be on social media as much in general due to the struggles of treatment side effects and the condition itself. Some times I just can't and sometimes I can do certain tasks still. God has surrounded me with many great blessings and he continues to daily. I am a very lucky and blessed girl. We just have to keep walking though the storm. It will all clear up in time and what a beautiful thing that moment will be. Today I woke up earlier and I felt promoted to read my scriptures off my night stand. As I opened a random passage, this is what I found already highlighted. 

 

-THE ACTS 1:4-20. Isn't it amazing when we eat our vegetables of the faith and devour ourself in our savior's love just how much stronger we can feel in all of life's great challanges! It's a super fuel to the soul & I simply feel blessed. -Chelle.   

I have received so many tender mercies of direction, comfort, peace, and true Christ like love this week. It does my heart great good. Words can't even explain the pure love I feel from my Hevaenly father. 

❤️ Valentine's Day was lovely it was our first married Valentine's Day. Husband got me the cutest T-shirt that says " " & even COOLER! We got our cute little wedding pictures in. I felt like a princess! What a sweet day to receive our wedding photography! 

Updates: Today I feel so blessed & humbled as I found some good information that I've needed all along for medical care. (We) I beleive in "choosing that harder right then that easier left." And I think that's being tested and that is okay because I have the savior on my side. During my duration of steroids, I have nicknamed my self "pop the pig" off the kid's game. The steroids make my belly round and extremely distended  some days. These steroids make me retain water very badly. And I can't drink enough water these days. Lol. It's truly crazy! I can't stand it but I find myself laughing              well at my current situations. (Crying just gives us a headache now lol) My knees even swell up so badly I can't walk or even bend them at times. They can't even be touched in my many hours long (sometimes all night long)  screaming pain episodes. (That no medication or remedy has been effective or can make "better".) I call myself now: "Rollie Pollie Oillie". Changing steroids will take time and the old steroid (Decadron)  That I was allergic to has to work its way out of my system still. It takes about 2 months or so. Due to taking such high doses of steroids for a long time I have to taper down or it could kill me. So that is why I have not just stopped the nasty steroids. I can't. And I never was intended by my team to be put on them longer term or up them so much... But sometimes you have to take care of business. But we are in the process  of coming off of them. And that's a step forward! But the new steroids IV do help me feel better to the source of the issues. Plus, I am not putting a pill in my mouth many times a day that I am simply allergic to. The ugly bad painful rash is back and forth. I did get some sleep though!! Yayyy! My body lets me get a little sleep! (I slept on average 3 hours in 24hours since Chritsmas and the last three weeks I only could sleep 1 hour in a 24 hour period. I thought I was going to have a heart attack I would be so fatigued. The miserable side effect of Charly horses full leg cramps finally slowed down again for a night. Crossing fingers they never come back. I will be glad to continue to taper off all these  nasty steroids and hopefully it will put some life back into me. Now all the chronic fatigue has set in. These stinking steroids so high are harsh at these levels! Awaiting IVIG to be finished setting up. Then that's my next step. I'm getting  back on that. It does take 6-12 months to fully load into the system. I won't be on social media as much in general due to the struggles of treatment side effects and the condition itself. I am still on lockdown and can only leave my house for medical or to go to my Mom's. Still have full care givers. Still having episodes of non epileptic seizures. I still lock up and I have stroke mimicking like symptoms. That's why we did a hospital check. To make sure nothing dangerously obvious has happened to my brain. I just had a massive brain bleed, aystemic Menegitis, & a severe CFS leak just 6 months ago. The doctors and test did clear my that I had healed from all that. (Unless I still have a slow leak.) The tests they are looking at my immune system actually comes from that original airvac stay (August) and I should have been told months ago. My Neurlogist I've have seenfor years never got the results and he is the one who started down this road of testing for neurological autoimmune. Lately, My vision is doing very poorly and I am having big eye issue that are effecting me. It hurts the muscles in my eye to move my eyes around. I have new glasses and all. So we hope it's a part of this. My brain hasn't been on fire since IV steroids and that's a good feeling so far. This recovery is super tough and I was very warned how tough this would be. And there isn't going to be any really clear answers for quite a while. Plus I have other medical issues added to the mix. Sometimes, I just can't do basic daily things and sometimes I can do certain tasks still. But I am down pretty good these days. God has surrounded me with many great blessings and he continues to daily. I am a very lucky and blessed girl. We just have to keep walking though the storm. It will all clear up in time and what a beautiful thing that moment will be. After going through the past few weeks of being told I was crazy to not being crazy to the challenges this has brought me. I think often about the talk "like a broken vessel" Elder Jeffory Holland. https://www.lds.org/general-conference/2013/10/like-a-broken-vessel?lang=eng                

Another Mormon Message has came to mind several times and I beleive they could be of great comfort to all struggling to climb those mountains. https://www.mormonchannel.org/watch/series/mormon-messages/mountains-to-climb-2 

This is my scattered brain updates. I'm sorry if they are groggy or a little off but my brain is sick. There is oh so much more but I am taking it "one day at a time" like I've always done on here. One Blessed Girl! Gods been sending me messages via social media and the right moments. It's the little things. (And best of all I just finished IV therapy which made me extremely nauseated and sick. But I got to see snow! I love my snow! Even if it does hurt my bones today!! It's the little things in life, like beautiful snowflakes falling like feathers.) 

Lots of Love to all! -Chelle