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