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

In My Cacoon. January - Update.

**prior to January's hospital stay** I've been in my Cacoon for a while now. While the rain storm keeps me up, and my knee remains locked and cramped thanks to side effects of taking harsh steroids. I lay with my bunny ear eye mask on. I figure since my hands are able to move and type, and I can think some at the moment. Well I'll type...I'm not well. 

This is something I have NEVER  done in my life, but there simply hasn't been another way to go through this continuing journey. It is a nightmare honestly. A few weeks ago I was unofficially told I likely have an Autoimmune Disease that is neurological. It's called "anti NMDA receptor Ecephelitis." (The Netflix movie "Brain on Fire". Is this condition.) My own body making antibodies is attacking my brain. I've been super sick since being airvaced this past August.  (with the CFS leak, brain bleed, & Menegitis.) They then decided to stop the IVIG treatment I was currently on at the time. It was the only change in treatments so it seemed logical to stop and see what happened.  Now we know was a bad move and was likely holding this beast at bay a little more. I am on extremely high doses of steroids, and even on more then one form of IV steroids. Then to top it off I am on an anti rejection medication to weaken my immune system. This is barely working and I am upside down currently in this war. I am at a literal war and I can honestly say I have never felt so incredibly ill in my life. They are trying to start plasma exchanges as well but it's proving difficult. I wanted to share this while I could as my whole body is effected and some times I can't even talk or move. I can't use my hands either sometimes. Into through katonic spells and all types of things that I don't remember after. I start pacing and no one can help it. My brain is literally on fire and steroids are the only slightest releif. It's a sick that is completely unimaginable. Whole body. My whole body just has wanted to shut down as it has. It won't even let me sleep for longer then an hour or so at a time and I get 1-3 hours of sleep a 24 hour period. For weeks I slept one hour a day only. (Yes I have "moon face" from steroids.)  

I continue the same and worsened in the hospital. I have a severe rash that is a side effect of the strong steroids I am on. And instead I got called crazy.  I landed myself in the ICU. I have no new news yet. I tested for an Antibody back in August but I was not told (even with asking) until I saw the GI doc. (Last month.) That's a sign of me having a neurological auto immune condition. They did more tests but it will take weeks to come in. I will be following up with my Neurlogist. We will start IVIG as fast as possible. We are tapering of the loads of steroids for now, and a plasma exchange may have to be done. I have had an extreme allergic reaction to the steroids I have been taking. They were changing the type now while I taper off and hopefully I quit with this full body allergy reaction. (That's the type of hospital care I received and it was very poor.) I am back with my Neurogist whom has been changing offices these past few weeks. Of course it's more difficult but,

He is trying to help me despite the trials. My diagnosis will be played out and monitored on how it goes with treatments.  I don't want to get into details today of how I feel symptomatically. It's just too much. All I can say is I've never been so sick in my whole life. And this time I am actually afraid of it all.  But I try hard with my faith and Heavenly Fathers love for us. There is a balm in Gilead. I have such a long road ahead of me. There are few smiles that have occurred as my face has been neurologically effected by this. So I'll share the ones I have. I got very much sicker after this time frame but I don't want to share details yet. 

This for this fight will be long. I wanted to share my testimony that I know the Church of Jesus Christ is the true church and he loves us each and every one of us. Especially through times of trouble. That the veil to heaven is so completely thin and bright that we can feel it here on earth. Grandma has been hanging out with me and getting me through my worse times, and that has been such a beautifully blessed piece into this. Angels are here on earth with us to bear is up and is God. -amen.  But the one thing I know is this beastly condtion has a lower probability of coming back after its gone. I'm in for the fight of my life right now and I couldn't have a better husband in the world. He is my rock and my bestie.

I love him so much! I hope he knows how amazing he truly is!  And my Mother is the best Mom alive. She has gone to the ends of the oceans for me time and time again. She has a heart of pure gold and I am so blessed to have her as my mother. She is Superwoman every single day. But thinks she is not. But she is, she is special.  Her love and compassion knows no ends. She is my inspiration in this life of what a Mother really is and what a true friend is. What faith and fighting truly is. She puts her shoulder to the wheel daily no matter what and she is the bravest-sweetest soul. I love you mom. Thank you for all you do for me. We just got news, I start IVIG this week via HomeHealth. And I am getting my new steroids so I can taper down the next month with out the world's worst allergy reaction. So blessed! Our prayers have been answered today. 

-Chelle