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.
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.
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"
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