Faith of a mustard seed. Tender mercy today.

Update after yesterday's pity party... A lot of prayer, a little faith in a hard time, and a prompting to watch this video (https://youtu.be/2nPY22FoDpY ) that popped up is AMAZING! Pray he is there. He does hear you. And he will answer you in due time. Have faith of a mustard seed  -Chelle

Today I Cried.

Today I cried because, I don't want to anymore. This year has worn me down more then ever before. I feel  broken and beyond repair. The truth is sometimes being sick breaks you down. The holidays for whatever reason really brings this out in me. Which is really great because then I proceed to be mad at myself for being upset. And the circle continues. I finally caved in and called my mommy and had a good cry. I don't think Fergie was right that big girls don't cry. I think we cry more... Mommas are the best at helping us find prospective in life and the truth is I am grieving a major loss in my life. I may never be the same person I was. But my mom pointed out that phases of life happen and we are not always meant to stay the same person. Change is life. It means we are learning and growing for the after life and gaining the tools and knowledge we will need to do the work we have been called to do. (Which is funny because all week the song afterlife had been stuck in my head and I know god talks to me  in these ways.) So yes today I woke up with no clear understanding why God would make healthcare SO hard to obtain, why I spend hours a week fighting to get the healthcare I need let alone doing the actual healthcare. It truly is a full time job between, appointments, pills, tubes, and infusions... and that is if nothing goes wrong along the way. It tears me down to go to the pharmacy and get treated like a druggie because I am truly sick. It breaks me down to have to fight with bill collectors because they always want more. It breaks me down to always be in pain. It breaks me down to get the flu weekly to survive. It breaks me down to push my body into a burning fatigue to merely do the work to survive this life. It breaks me down to be afraid of being called crazy by medical professionals who do not understand my complexities. It breaks me down to be different all the time and appear the same. It breaks me down to see what scars, steroid weight, and fragile thin hair stares back at me in the mirror. It breaks me down to be broken down. As Julie Andrew's sings, "I'd sure hate to break down here, nothing up ahead or in the rear view mirror, out in the middle of no where knowing. I'm in trouble if these wheels stop rolling. So god help me keep me moving somehow. Don't let me start thinking I should miss him now. I made it this far without crying a single tear. I'd sure hate to break down here." Now I am not in a break up but I am so far ahead from the starting point but I can't see the end of this journey. And breaking down here, now is not an option. That's where faith comes in and we rely on God to carry us through the journey. When we are all about to break down. God wont let us because we are not meant to stop here. 

I don't know why this tragedy has unfolded in my life. I was a happy newlywed. Who had overcome being disabled. I was in a remission of several other nasty diseases. Then I got side swiped with an autoimmune disease that attacks my brain. That has caused nothing but heartache. But I know I have a strong momma to guide me through this trial. I can't see ahead but she can. And if she can then I will keep trying. I will keep praying in pure faith that My god has never failed me. And maybe it is just the adversary trying to pull me down. Maybe the adversary wants me to believe that I am nothing more then a broken brain, medical Bills, and a person who needs help. Yes, that is exactly what the adversary wants me to believe because that creates a wedge between what I know to be true. God is there and there is a reason for our trials in this life. Life is a constant changing and together in faith we can overcome these trials. Faith not fears. Cry your tears then dry your eyes for a better tomorrow. Dont give up the good fight. Even if there is no end in sight. And remember you are likely doing better then you think you are -Chelle &  Chelle's Momma. 

Christmas to do list thoughts.

I have gone so far out of my way to enjoy this Christmas season. Doing  little things like planning  far ahead, getting my 'to do's' done early, putting my tree up before Thanksgiving so I could enjoy the holidays. And if you're chronically ill, I highly suggest it. It helped me be able to relax and enjoy the true meaning  of christmas.

Today started out really great. The weather was beautiful and sunny. I felt decent and bright.

One big way I know christmas prepping has been working for me is, today... I shopped for a few hours  and made cheese ball all night. Two extremely hard things to do for me. STANDING. Ugh my worst enemy with POTS. After a month of no insomnia. I am having insomnia, I've been having  severe signs tonight that my body has been pushed past it's point. And the hard part is, I truly did not do very much. It makes my heart hurt in so many levels to feel so fragile all the time. To not be able to do what I want or even what I need. You NEVER think it will happen to you, untill it does. (And then it is too late.)  So I am bumping some of my plans and adding in more rest time. Feeling down about this I prayed. I out my heart out and I got a return message, "it is going to take another year." I am turning back into myself again slowly but surely. But I have to be oh so careful. It's not just my health anymore it's life or death. If I flare up I can die now. And that's a burden of it's own to carry.

 But when I put all those worries and thoughts in my head aside, and listen to heavenly father I know that's my road map. It is okay to go slow. It is okay to put your tree up and wrap your presents a month early. So you can watch christmas movies and feel the spirit of Christ in your home and life during december. It is okay to go easier then normal this year. (Or than you want.)

I truly really had christmas hyped up in my head this year because it was the very last time I felt like me before I " woke up a completely different person" I have been trying to navigate a whole new world this year and I've desperately been searching for myself within the rubble. But I know heavenly father is molding me as much as I don't honestly want to be right now. It is painful physically and mentally. And I've been mad, sad, and weepy for a year. A part of me knows it is time to move forward and start excepting the new me. As much as I do not want to. So i told myself Christmas was my goal to get back to my normal and when that did not quite happen i decided to have a great Christmas to celebrate the year I've endured. I really wanted to feel the spirit of Christmas. And I have.

 Some times we have to have heartaches in life. We know I am no stranger to this. I've been fighting trials unfathomable for many years. This one just took the cake is all. But Jesus has atoned for our sins and felt all of our pain. He has compassion for all of our sufferings here on earth. How special is that?  Christmas is not about the hustle and bustle and pushing ourselves into our sick beds. I realized this tonight. I am sad that going grocery shopping and making cheese spread over did my poor body but I am happy for prospective on my life. A glimpse, a pure tender mercy that it is going to be okay again. That in a year I very well may have my normal back. And now it is time to start moving forward with a new normal. God will redirect us in life. He will change plans. But I can attest that every time he has changed my plans something better has been in store. Heavenly father isn't hurting me, he is blessing me. Because I am way too stubborn to do it on my own. I am very excited to see what 2020 has in store. I feel there will be blessings in store.

 Speaking of what 2019 had in store and blessings. We  could have never prepared for the storm of autoimmune encephalitis that almost took my life, and shut down my whole body last year. What a trauma to me and my whole family. The other night me and husband where talking over the crazy beyond crazy year, and he said. "With everything we have been the lucky ones." At first I wanted to smack him until I realized what he was telling me. Things were bad. But they could have been so much worse. I received so many blessings this year. I could very well be dead. I could also be a vegetable. What a huge blessing. What more could I ask for this year? The biggest blessings I had in front of my eyes, and I could not even see them. Huge blessings in my life. Thankful for husband to point these things out to me in my down times.
We do not need to stress and worry. We need to just enjoy our lives and our precious families.
The lord will give us opportunity this coming new year in all aspects of our lives and the savior will direct us and comfort us along the way. Much love and a merry christmas -Chelle

Christmas nostalgia.

This week has been a different week. I've been sickly a bit more but still okay. I've been busier as I started my new job yesterday. Nothing major Just answering phones at home. Something I've been praying doe and searching for for years. A form of work, from home. God listens to our prayers and provides for us in times of need.

It has been a week of majorly pushing myself out of my comfort zone and trying to enjoy Every bit of the  Christmas season.

                    

 We went and put small lighted Christmas trees on Grandad & Grandma's graveside. I found a pearl christmas tree ornament and of course she needed it right!?

I enjoy decorating their spot. Some may find it weird but I like feeling like their gravesite is taken care of. They are not there but it's for them. Other family decorates as well on the regular but I try to make it a priority to do something every season. It started with Grandad and now it's for the two of them. Grandad was my angel for years and comforted me through some dark times and grandma has been with me this year a few times. The veil to heaven is thin and we can feel our loved ones when needed. They visit us if we pay close attention. It has been such an anchor and a blessing in my life. Families are forever.

And of course it wouldn't be Christmas without making my granny Hatch's famous Caramels. They are the best and hold nostalgia in my heart of her Christmas parties growing up. When I think of Chritsmas I think of excitingly going to my grandma Sherron's house on christmas eve. She spoiled us so rotten it was just as exciting as Chrristmas morning. And for many years granny Hatch would join us for the excitement. Then we would take her home and keep an eye out for Santa and look at Christmas lights.  Then the next evening we would go to the Hatch family party and watch the adults fight over these very caramels. In this family these are not just candy they are so much more.  It was great fun.

As I reflect on Christmas granny Hatch and Grandma Sherron play nightly big roles. I don't think I have memories where granny isn't cooking or baking something. For a time i would go with grandma Sherron (granny Hatch's daughter) to Granny's house and she would make break and cinnamon rolls for the whole family and the whole town. Every single week. (If I recall right). I would sit on the counter and eat candy while they baked and baked and baked. I'll never forget the smell of her house those days. You dont smell bread like that anymore. No one can make as good of bread as my great granny Hatch. When we got bored enough with that we would go play on a metal train she had out in her front yard. Such simple fun that I will remeber for a lifetime. 

Life has been good to us and even with trials Christmas is an easy time to reflect on these precious memories that make up our lives. In times of hardships these memories may bring sadness of what was but the key overcome the sadness is to remeber what good times we were given. What tender mercies have been brought into our lives and what is to come will be good within our lives. No more holiday perfection just enjoyment. That's how memories are made. By the simple laughter, love, and joy upon one another. Simple Christ like love. Jesus Christ the savior is the season. -Chelle 

The hair struggle is real today.

The hair struggles have been real today. But on the bright side I have a new crown because well I am a princess...

Half my hair is baby hairs that officially stick straight up. We worked hard to tame it and are off to push through another day of sick. Post ivig and a lichen flare. But I am ready to get out of these four walls. I feel ugly lately as I finally caved in last week and bought a pair of fat pants. I have lost my long hair this year and as you can see it's wild now. (But fortunate it is coming back.) I can say this year, one of my biggest trials has been feeling like Chelle. I went to sleep and woke up in a different body in every way. I did not really go to sleep... I simply do not remeber. Maybe that seems so small to you when I barely missed  my own death this year. I can say it is a true trial all f it's own to not feel like yourself. You learn to rely on the savior during this time. I keep thinking about Jesus and how he felt every pain imaginable... and I always think, "how on earth did he do all that. When my pain is so strong?" But something I know is he was not alone. He had Angels round about him and His heavenly father the whole way. And thanks to our savior Jesus Christ we have the atonement. And I never have to walk alone. Even when it feels endless, relentless and too much to bear.

So today despite my flaws and illnesses... because of him, pressing forwards with faith that I am more than my physical self. One day my clothes will fit again and my hair will grow back. Or not. But one day I will feel like me again. One day at a time -Chelle

Good day for good news.

Today I received unexpected comforts from my neurologist. I was up all night full of appointment anxieties. I prayed until I finally fell asleep. Turns out my prayers where heard. I have slow but steady progress and that's exactly where I should be. The weight gain is from the steroids and though I gained it all in a quick two weeks thanks to the necessary evils, (said steroids)... it will come off on it's own with time. The frustrating part for me is, I can not work it or diet it off... I just have to wait.

 But the BEST news is my autoimmune encephalitis didn't just fall out of the ever so scary sky. It does not happen likely in POTS patients but we are prone to autoimmune encephalitis and spinal fluid leaks. We tend to have these complications. They dont know why or what the connection is. It just is. So for me this is a horrible disease that I still have to endure, but all my horrible diseases go together. However it is such a releif they aren't a bunch of random rare diseases. (Though some of them are very rare to have.) Hopefullly that makes sense. But I am so relieved. Words really can not Express it. I am counting my blessings today. It has been such a trailing year for me in ways I likely will never talk about on this blog because I would prefer to seek the light of this nightmare year. (Plus my memory is a big ur this year with gaps inbetween.) But I want people to know there have been very dark times amongst the bright times this year. But one thing I have a strong faith in is that heavenly father let's dark unphathomable times come so we can learn and grow and enjoy fully the brightness that enters our life.

On another note I can't get my community out of my head the past few days... I see so many families recently face such trials. Something big in heaven must be happening for Heavenly Father to bring so many sweet amazing people home. I pray for the families to have comfort and peace during this time. Lots of love -Chelle

It's early.

It is early today in the Germann household. I've been up since 5 am. My new normal. The only problem... I'm not able to sleep until after midnight. A spoonie needs her sleep. Every morning on the dot, I wake at 5 am... i am currently waiting on my home health nurse to arrive here. Today I have home health IVIG. I find it ironic I have an infusion once a week that make me sick for a minimum of a day, to feel better. Well actually, for me it is to keep me alive. Not because of my POTS, or several other conditions, it's that lovely old mean Autoimmune Encephalitis. My steroid weight is slowly coming off and my hair is growing back in. BROWN! I think I'm having an identity crisis. So I have some long thin-brittle red hair and baby patches of brown hair. Its bananas! (Something that has helped my steroid weight come off is lymphatic drainage... and I have been using the Noblerex Platium machine. It also helps healing and strengthens muscles. I personally love it. It has helped me gain some leg muscles again.) 

This morning I have been reflecting on my past year.... tomorrow is my 1 year wedding anniversary! 

It has been a year of trials, great suffering, heartaches, yet a year full of limited love. My mother lost her job to take care of me when I was dying and has not found one since despite great efforts. She feels bad but all I see is a brave, beautiful, strong woman who so selflessly gave up her stability for her grown daughter. I have the best mother on this planet. Idk why some trials happen, but I know God is watching over us. He will bless her for her blessings she gave to me. I do not know a better person in this world then my momma. I really don't. 

My dearhushand has stood besides me continously. He could have walked away or deemed me crazy as some negligent doctors did. He could have ran from the chaos and pain. But he merely stood besides me and held my hand. Even when I was fat from the extreme doses of steroids that are the only reason I write this today. It is crazy how life works. Things happen beyond our control and all we can do is our best and learn the lessons within the storms of our personal trials. I believe God helped us this year. Getting married was such a big decision. It meant losing heslthcare and financial stability of my disability. It meant choosing the harder right then the easier left. So of course Satan had to play his game and try to ruin the goodness. My first year of marriage is a true testimony of walking blindly in faith and choosing the right. And that choosing the right won't always make everything easy or go "right". It simply means trusting in our heavenly father and following his teachings. But I know we will be blessed if we have not yet been already. I value and cherish my hard first year of marriage because though I wanted to die and all but did.... the blessings where innumerable even if it did not always seem that way. I have such a good husband and I am ready for year number 2 tomorrow. A brand new start. Hopefully with health and little trial. Xo -Chelle 

We love halloween! We've watched the classic movies. I didn't get any trickery treated. Ap my heart hurt a little lol but we had a fun might together after Husband got off work! After all we went to a church halloween dance for our first date... 

 I was a scare crow

We  were too lazy to carve our pumpkins so we switched to our artistic painting ablilities.

M.I.A.

I realize I've been quiet lately. I've fallen into blogger silence. I just have not had a lot of updates. There seems to be steady improvement but at the end of the day I am walking on ice. I have many victories but my heart hurts most days. I know every single thing is in God's hands and he has a plan for me. A plan Devine than my own patience. So I will rest in him. This song perfectly sums up my many emotions right now. I'm grieving, to put it simply. Which is actually a good sign because the fact that I am processing g means I am feeling better and no longer merely just surviving. It is part of the healing process. "Even when I can't speak" by julie yardley is a beautiful song for times of hardship reminding us if the bond between our heavenly father and us. It is consistent even when we ate not. Never lose faith lovies. If your world crumbles he can save you & he will in his timing. There are many lessons to be learned here on earth and trials to be overcome. For this I can honestly testify. Love yourself and be more patient to yourself. My sweet grandmother told me that I didn't always have to be so brave in my last conversation with her. I remember being confused because I was doing SO well. She is my angel. And her wisdom rings in my head when things get tough and I allow myself to step back now and take a break when needed. As grandma would say "just do the best with what the lord has given you and do your part and everything will work out." -Chelle
Here is the link to Julie's song.
https://www.invubu.com/music/show/song/Julie-Yardley/When-I-Can't-Speak.html

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

I let my illnesses bully me.

Today it hit me. I've gotten to the point to where I felt decent wearing makeup. (After a battle with steroid induced acne that was horrific. Makeup was even too painful to apply, even if I had wanted to.)  To realize I still don't feel good about myself. Makeup used to be my armour. Something I enjoyed on a sick day. A coping mechanism because, I looked well on the outside and I could pretend I was fine on the inside.

Well the insides won this time. I don't know how. I have NEVER let my health beat me down. It ravished me this year more then most people are aware. It's no secret I almost died and the treatments where rough to me. But for months I couldn't leave my house. I cried every time I looked in the mirror as the steroids and I mean massive amounts of steroids for months that almost killed me alone. That stopped my immune system and pushed my little body beyond belief.

These steroids changed me. At one point I was not recognizable to my home health nurse outside of my voice. I don't think I'll ever be the same. The weight gain, now the zillion stretch marks, the acne, now losing my hair. BUT I am alive. I am here & though I wasn't always happy, I'm happy. It hurt in unphathomable ways. But I did it. But it bullied me. Being sick and these treatments locked me up in my house.I hid from literally the world. And I just realized that as now I can put my makeup on after relearning how to do it with the brain issues. Now I feel ugly because I feel bald, though I'm not completely. Plus my hair that's left is just fuzziness. But I'm still me. And I was thinking today, "what's the point in putting on makeup? It doesn't matter. It won't matter for months or another year when I feel normal again." And that's when I realized I let my illnesses bully me.

                           

 I let the weight gain, the pain, the hair loss, speech issues, and feeling like a total dummy when I can't comprehend the simplest thing bully me. No. This isn't going to be. Not anymore. I embrace the flaws of illness. I will make lemons out of lemonade and I will fight this because I am STILL ME. No matter how different I feel. So I pulled out the makeup and put on a what turned out to be ugly PURPLE wig. But I laughed and the smile was priceless. Don't give up enduring any trial no matter how hopeless it seems. No matter how dull your light seems. Keep going because I promise God is with you and he is there even if we aren't. And there is always light at the end of the tunnel. And you will be blessed for the trials you face in this lifetime certainly fly in the other side of the veil to heaven. Pray often. I promise. God let me sincerely smile tonight and enjoy my makeup. I ultimately felt alive for the first time this year and I am blessed. It may seems small but it is oh so the big picture-Chelle

Medical care in America?

Its amazing what the right treatments can do.

I haven't had symptoms since getting my first round of plasma exchange. Which is what it's supposed to do. They will remove.my line this week. It hurts pretty bad so I am happy it will be removed. Thought I know that will hurt too. Then we will continue with IVIG and hopefully be in the clear forever. You can tell I'm doing better because I finallly put makeup on and did my what's left of fuzzy hair. Treatments have not been nice to my hair this year. That's been harder to deal with then I thought. I've considered a wig but then I just am like oh its not that bad. I feel homely though. I have 9 months left of hair loss, weight gain, and stretch marks to go. They told me from the heavy and long steroid use it would take a full year for the nasty side effects to go away. It's been three months. The acne is finally starting to go away. I am glad they saved me but the side effects have been simply terrible on me. That's why we are taking alternative and better treatment approaches. God has been good to me and I'm thankful for good doctors that try their best by me. I'm thankful for these treatments though they are a trial themselves.
I currently don't have a Primary care provider due to being "too complex" the company decided they will not treat me since my regular doctor left and literally left 4 of us "complex patients" on the streets to vend for ourselves. Leaving it all in my lap to find a way to obtain my meds and regular care. I have to restart and find a new doctor and the earliest they will get us in is a month. So for a month of going through heck itself I have no help at home. Our medical care is oh so lacking. It is sad to see others suffer because we are the sickest. Its pure laziness on the medical end. No one wants to be bothered by us and they don't care if we pay that price or even die over it. It's wrong. It needs to be changed. And I plan to work towards fighting the fight for others when I get on my feet. I will continue to advocate. Patients deserve rights to actual care.
 I was sent home to die in January when I could have had a simple dose of IVIG that would have and did eventually at home months later save my life. My neuro had no hospital rights at that time and begged the neurologists at a huge hospital in the city to just try one dose. But they instead told him, " no. We know she is sick and dying but we don't want to deal with her." On the other side I was being told, "you're crazy and you're family is letting you be." (That was after they accused my husband of abusing me. Because why else would a disabled female get sicker? Funny they dropped those accusations when they found out his occupation.) Bottome line is corparate care is not about caring for sick people. It's about making money and the two do not combine and work. Doctprs hand ate being tied. It's not always their faults, I should add. As the patient I can vogue years of these experiences. Paying the price of no care when I deserved better. Chronically-ill patients across the country  are struggling. I talk to them and hear their stories. It's not just me or bad luck. It is not a one time oops. Its turning a blind eye because that's the easy way out. Its knowingly harming patients. Some times on purpose. And a lawsuit isn't going to fix it. It is much bigger then that. I won't give up even when I'm given up on consistently. But things really need to change before more innocent lives are hurt and lost. I pray and hope for better care one day soon. -Chelle

Round two 🥊

It's the second round of plasmapheresis. I'm currently hooked up to this machine that's taking my bad antibodies out of my system. Bye felicia!

Today seems much better then Monday coming straight out of surgery to the plasma exchange.  My dialysis catheder is sore but continually feeling better. I still can't move my neck. I have a small incision  in my neck from placement.

But I can say after my first round of this plasmapheresis I felt so much better! My brain no longer has felt on fire and seems less inflamed. No more seizures or hallucinations. No more flu like symptoms. I'm so much brighter and happier. It was messing with.my brain so badly. Life is better. Which is exactly what this whole ordeal is all about is putting this nasty autoimmune encephalitis in its place. I don't want to get too excited but I think I feel better then even when I started IVIG. So I may have been needing this kick in the pants all along. It gives me lots of hope. Never give up hope. I feel very blessed beyond words today -Chelle

It's 3:37am

It's 3:37am. And I am pretty positive I am flaring with my autoimmune encephalitis. Which is extremely scary. I trust in Heavenly Father's plan for me, and I know I am doing the best I can with the circumstances at hand. But I really don't want to go back on really tough treatments. I'm still not over the last round. And I am sitting here with insomnia, worrying myself sick. And then God talks and I start thinking about Emma Smith & all the trials she faced in faith. And that made me think that my mindset must be off somehow. I needed to do some digging. So I started searching for Emma Smith history because that's what popped into my head. And somehow I found this podcast. Which is not Emma's Smith history at all but that's what led me to this... .

(I am now a subscriber. She seems pretty amazing!) 

I think it's exactly what I needed to hear. Ugh this circumstance stinks but is it worth it? Yes, I would say Living is worth it. Hills and valleys. She brought up everything I already knew... That worrying isn't going to change my having autoimmune Encephalitiis among ten other chronic illnesses. I want to be well but I simply can't wish myself well. I definetly can't worry myself well. God has plans. God talks. God directs. If we listen to the still smal voice. I prayed last night to be guided in faith by that still small voice and that I'd follow if he would give me comfort and peace. He comes through when we need it most and we are Indefinetly never alone. Pray he is there. Speak he is listening. You are his child. His faith now surrounds you. -Chelle

July

The 4th was fun! We made more memories.

 Love Birds... Is it even the Fourth of July if you don't eat a hotdog?!

As life goes on this blogging thing keeps getting harder. I don't know, maybe that's the way it's supposed to be. It's funny how time passes by so quickly when you're  doing better and so slowly when you're healing. Looking out the window watching life pass you by, wondering if you have much time left on this very earth yourself. Then you heal and blessedly overcome it and hit the "weird-patch" of recovery. Where  you're not quite normal, you're starting to realize how sick you just where, & the fear of going backwards in any direction is paralyzing in itself. You want normalcy back in life but you're simply not the same person as before. And that's okay. Being sick is okay. Being imperfect is perfect. Life happens to everyone and if they say it doesn't they are probably 100% lying. I've been through things that blow my own mind but they make me better. They teach me a lifetimes worth of lessons. Gods timing and faith in that. I am not a patient person. Maybe that's why my patience is always being tested. Just rest in him and bring yourself home. Worrying will only drive yourself crazy. Be you. Be silly. Be happy. Be sad. BUT then be glad it happened at all.-Chelle

God talks.

Some times God just has a way of letting you know everything is going to work out.

 

Even when you're flying by the seat of your pants and jump into starting a new business. Being Chronically ill is oh so challenging in all ways! Even financially it's hard to work and sometimes impossible. Yet you have to still pay yo bills. But I have a huge faith in Heavenly Fathers plan for me and all I need is love & my family. Don't ever take your health or family for granted its all this life is really about here. Things are just things. Families are forever. Love -Chelle 

These past few weeks I've gotten extra husband time and it has been the best! I am healthier so we can do a smudge more and it's nice to feel nice and have fun! 

The other night we went to dinner and a movie for the first time since married. We saw Toystory 4 and I LOVED Toystory growing up. My uncle got it for us for Christmas one year and we used to watch it on repeat. Back in the day on VHS and you had to rewind the tape. Silly how times have changed. But the ending sincerely disapponted me. But that's just my opinion and that's all I'm going to say. Nonetheless we had fun and that's what it's all about! 

          

He is my "favorite Deputy" "you got a friend in me" -Chelle 

I don't know if I'll ever stop comparing myself to normal people.

One of the hardest parts of being chronically ill is comparing yourself to others. We all do it but when you don't function at a regular level, it's hard. I want more then anything in the world to be "normal" again. To be the old me. Yes I've grown and I've been blessed beyond blessed. I've seen things and know things about the other side of the veil that I wouldn't without my trials. I have a faith that is bigger then my fears. And that took time and being extremely ill. At times faith is all I had to grasp to. Day to day I didn't know where I was or what was happening to me. I literally lost my mind just six short months ago. But I didn't really. My brain was under attack by my immune system. But Satan was using this to his advantages. Doctors deemed me crazy and treated me like less then a human being. Some knew I was dying and simply turned their cheeks. All the while I shit down and suffered severely. My family suffered severely. It was a very dark time. I was close to that veil again. And let me promise you Heavenly Father knows your afflictions. He knows your pain. He knows your sorrows and your heartaches. And at times it's a year of faith to rest in him, to truly trust in him. Like when you completly start to seizure, hallucinate, go cray cray, and then go catatonic and almost con arose. When you constantly don't know where you are or what's being done to you. I'm glad I don't remember and have permanent memory loss. But I do know that I was surrounded by angels and my Heavenly Father's love for me at that time was fierce. And in this nasty recovery of side effects from such high doses of steroids that I couldn't even recognize myself in a mirror competent swollen in so many ways head to toe. Covers in rashes that hurt. Being completely isolated because of lack of immunity. Idk completly why I had to nearly die, and recover from this nasty terrible disease after ALL I've been through already. And many tears have been shed. But what I do know is my Heavenly Father loves me enough to let the storms come. He lets them mold me and challenge me past my limits. He challenges my loved ones. And sometimes that breaks my heart as I feel so helpless to them all in those trenches of physical war. But don't give up no matter how afraid, tired, and just completely insanely bullied or isolated you may feel. No matter how

Many normal people you see pass you by when it took you a week to get out of the house and stand next to these normies. The overwhelming feeling and grieving of missing the old you will hit in these moments. But don't let Satan win. Be the stronger one and see all the good. Remember just how hard you worked to get to this vey moment. Even if it's gut wrenching and hard.  God is there I promise and the afterlife is so going to be worth all the heck we go through here on earth. -Chelle 

Uh, Father's Day

I'm currently laying I bed at 3:08 P.M. Don't be fooled however, I woke up at 7:30 this morning. I am simply working on getting stronger and healing. Today I FINALLY drove for the first time since SEPTEMBER!! That's 9 whole months of not being able to drive! It felt amazing to feel independent again. Seriously! It's baby steps and big steps. Life keeps passing by and I am doing my best to roll with it. I have gotten off 2 medications this month and I'm super glad about that! I take too many to count so you know less of me playing pharmacist... My face is healing my weight hasn't moved on the scale but I keep slowly shrinking I hope! Steroids are mean! They told me it would take a year for the weight to leave me. That's a hard thing for me. What doesn't kill us makes us stronger!

Last weekend we made it to the Lake for the first time since I've gotten sick & this year! We enjoyed nature and fresh air for a bit, and of course those beautiful sun shine rays!

And then I came Home and took a relaxing, Kinda creepy blackberry bath, but on the bright side it didn't stain my bathtub 😉 I felt like Ursula.

Father's Day weekend was good we went to dinner at the grandparents for steak and lobster. YUM!!

Happy belated to all those incredible fathers out there including our Heavenly Father who knows us better then anyone else. Who knows our trials, tribulations, triumphs, & personal destinations. He is the details of our lives & I am eternally grateful for his never ending love for me!

 
Especially mine.-Chelle

Super busy🙌

It's officially 6 in the morning and I've been up since five so what better then to watch the beautiful Arizona sunrise and write a blog post 

The last week we have bee super busy! We put our tiny yard in and it officially feels like summer! 

We also added plants so it looks better already! 

Nothing says Sumer like beautiful bright flowers! 

                                     

It's the little things in life people! I have been able to get out a bit more and I am excercising more all the time a.k.a my at home "Physical Therapy". My neuro isn't ready to put me in rehab because my brain is still healing so it could be wasteful at this very time. So my sweet husband and I decided we would work on things together. I had lost my ability to move let alone dance.

So, it's fitbits & Nikes! We went with "Just Dance" on our Nintnedo switch. And I tell you that boy loves this game more then me! This week I have gained new movement control and a little more range of motion. I'm not getting stuck on the floor as much when I would sit on the floor or anything like that if literally not be able to get back up again. It makes my heart happy to see minor but major improvements. I also adult color, write my letters, & read to help my brain reheal.

I figure it's not going to hurt anything to try.

My speech was being a rock star but a few days ago I  started slurring and stuttering again. GRR!  Drives me cocoa bananas when this happens! There are a lot of emotions that come and go from
anger, anxiety, to happiness... And that's life. We were sent here to learn and grow. God is going to give us trials and there's nothing we did wrong. He is simply letting us grow, no matter how unfair or heart wretching the situation may be... Take heart, for those who have walked before us have been trialed. If you read the scriptures they teach us of trials and tribulations. God is our parent and some times he must let the storms pass on their own for our own good. 

This has been a long recovery and much has been left to pass. But I've learned a bit and there has  been good of it. I know Heavenly Father loves each and every one of us so very much! My Grandma Pearl used to tell me this and she held a strong testimony of doing the best you can and the lord will help with the rest. I've been thinking of her a lot lately as it is about been a year since she passed. A year ago I was healthier in Utah, saying my goodbyes to my sincerely sweethearted souled grandmother. I miss her dearly but her strong faith reminds me consistently what love, faith, and family is all about. And I try to live by her examples. I may miss her but I know she has been with me in scary times. Plus we know of the plan of salvation and that she is returned home again with loved ones who have passed before her. What a blessing and reunion that must be! Since she passed I just incvision  her cutting a rug with grandad when I think of her up in heaven. So I hope that's the case. I think it's time for a protien drink. Good morning! 

Remember who you are, and do the best with what you can and leave the rest to the savior! With love -Chelle

We decided to bring Grandma some

Pink roses later this morning. I felt I needed to go visit her. I walked into the store and my eyes immediately locked into these pink flowers. They looked like her.

And I pointed and said, "those are the ones." My phone somehow unhooked from the car's Bluetooth while I took these pictures and the song, River God by, Mindy Gledhill was playing. I hope you enjoy your roses Grandma! I miss you oh so much & "love you a bushel and a peck and a hug around the neck."

 

Eyes can tell a lot. Autoimmune Encephalitis

I found a picture I took in Feburary for one of my doctors I cropped my eyes to show what I can't describe.. I was so sick I couldn't even hold my eyelids open and I was just so ill. I was on steroids so they where swollen. My eyes didn't look bright. They didn't even look alive. The lights where on but nobody looked very home. But I was in there. Makes my heart sad to see what I've been through looking back lately but I'm full of gratitude for the out pouring of blessings and tender mercies I know I recieved from Heavenly Father. I was being ever so watched over. "And mine Angels round about me to bear me up" upon those hard times . -Chelle

June.

June is here. That means wedding season is upon us. Last weekend

A sweet dear cousin was married.

So of course we had some wedding reception fun with family. Family is to be cherished and I love every second I get to spend with mine!

My sweet husband is new to the family and I have too many cousins to count so he keeps asking when the next wedding is! Oh boy! There isn't currently a next. But we are practicing our just dance games for the next one. (Best push coal therapy I've ever had!) I've lost a lot of abilities this year and dancing is one or really movement in general. But I don't give up that easily.

I wouldn't take pictures before, but I will now. So what I gained steroid weight and I got moon face, steroid rashes, and no immune system, oh and the constant hair loss. 

But I'm still me.

Stephanie Neilson taught me many years ago that it's not about your scars, it's all about your heart. That message stood with me strongly for years of tubes being shoved in and out of me. But the steroids felt like I went to sleep (memory loss) and woke up an entirely different person. I now knew what Stephanie more was referring to. So I'm trying to keep that small strong message in my head &  will focus on living. Though, that was not always the case I locked myself away from the world for several months amd cried every time I saw my reflection in those very avoided mirrors. As time

Passed with a little pushing from family, I finally was willing to leave the house again.

I mean after all I did just slip by deaths door once again. If that's not a sign to enjoy our time here on earth I don't know what is. Grab your loved ones and hold them close because time is truly precious.

Time is a gift Gods gives every soul here on this earth. No matter how short we came and we succeeded in getting a body to return home. We don't know when those times will be cut short. So go, live, & most importantly love. Oh and don't forget to laugh along the way! -Chelle 

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