Thursday, May 30, 2019

Just Gabs

I am down today. I am stuck in bed. But I have the best Husband ever. He made me coffe mixed with Breakfast essentials (just me shoving some vitamins in somewhere.) . I know we're not supposed to drink coffee but it does provide me relief in times of need. So I guess I use medicinal coffee. Lol.  I have Endometriosis with a side of a migraine. One day I'm up the next I'm down. Yesterday I put makeup on and curled my hair .
This is the first selfie I've taken all year due to the nasty steroid side effects of moon face. I used to bawl every time I looked in the mirror. I literally woke up a different person. My body was different in every way. It was really tough. My neurologist even apologized a few weeks ago for putting me on such extreme dosing but it was that or die. During it I proclaimed often, "I'd rather die"
But that was probably those steroids making me more manic then the Autoimmine Encephalitis was.  But things are improving slowly.
I wish faster but I'll be content with improvements.
 I definetly need to do more of that! It makes you feel so much better when you can feel like yourself and just simply put together. No we women don't need make up to be pretty. I just have always had a love in my heart for makeup and the way it makes me feel. And I hardly wear it anymore because sick took over and energy is sparse  & that's okay too! 
I finished month 3 of IVIG last weekend. And it makes me SO much better!! Lately we have noticed a huge GI improvement. (My whole GI system is paralyzed neurologically.) I can eat & drink 100% by mouth. I can even eat vegetables and fruit! But I am keeping the Gastric Tube. It was way to hard to get replaced once I slipped backwards and Really knocked me down. So I'll keep it and have it for those rough patches. Because we don't know. It's all a Rollercoaster of neurological chaos. We now know how to treat it though because I have autoimmune encephalitis. The goal for now is focused on time passing essentially. This next year is to see what my brain heals on its own. I have brain damage now. But if I stay in remission for a few years it shouldn't come back again. So the success rate is amazing. I started my immune supression therapy back up after a week pause. And my hair is falling out in clumps. I'm gonna need a wig you guys! They have definetly squashed my
Immune system this year. Sometimes it makes my stomach flip upside down to see all the hair that falls out in the bath. Every. Single. Time. (Daily).  Plus the hair we constantly find all over ourselves and the house. Then when I have to comb it. And I use a pick. I'm super careful! 

I have the best husband and if anything being sick has allowed for more time with him. 
We have been challanged this year unfairly.I think we've only been made stronger because of it. He is my best  friend and my other half .
I could not do it without him & I couldn't have found a better man on this earth to be my soul mate. 
I'm not just lucky but I am very blessed. I love you Husband! -Chelle 

Wednesday, May 29, 2019

Contentment

lately I just want all the bad things to go away.  All the side effects and pain. I want my body back. I want the invisibility back. I fight SO hard every single day to do all in my power to heal. I wish I could loose the weight, shrink the moon face chipmunk  checks, find the energy again, remove the purple stretch marks, & rash from hell itself,  the stiffness, the lack of coordination, change in mobility, & press forward. Tonight I realize I just am going to have to find contentment in the middle of this. It's that simple. I can't change this. I didn't make it happen. It's just the undfortunte side of Autoimmune Encephalitis. So finding contentment In saviors  plan for me. Goal.
-Chelle

Saturday, May 25, 2019

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

Thursday, May 23, 2019

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 


Thursday, May 16, 2019

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"