Body on fire solutions?

"Sometimes these wings get a little heavy I can't see between the lines but I'm rocking steady. When I can't  fly I start to fall but I've got wheels I'm rolling on" -Miranda Lambert.

Haven't seen this guy in a while... #backpack #backpack #tubie

Back to tube feeding we go. (It's a chocolate orgain meal replacement shake and baby formula cocktail.) 

I have been having some not so fun full body burning, fatigue, insomnia. I was getting really concerned. It is something that's been ongoing for months but getting worse by the week. It was only at night time but this week turned 24/7. We were not sure what to do or what was causing this nerve pain....  (having multiple diseases gets complicated to pinpoint issues. We hit our heads against the walls regularly. And it is simply harder this year. I lost my confidence in figuring out what is wrong with my body.) Then it hit me. The answer to my prayers. I have felt this way before.

It was during the time I was coming off my formula tube feeds to foods. My body was no longer absorbing the protein out of normal foods because it was so used to more broken down proteins in formula. Malabsorption from Gastroparesis? So I contacted my doctor to make sure this was on the right track and they agreed. So back to tube feeding. I never imagined I would be so istatic over tube feedings. You see the thing is, you can work with nutrtion. You can supplement it. Though I am eating by mouth my body is rejecting it. Ignoring it. Not processing it. And I have been muscle wasting causing these horrible symptoms. But the good news is fingers crossed for two days it seems to be doing the trick. Moral of the story, NEVER be ashamed of tube feedings. They keep you well and well is the best way to be! It doesnt matter HOW you get nutrtion it matters that you GET IT. It was definitely a God thing. He is with me always. Directing me down this crazy windy path. One day at a time. Simply blessed -Chelle

Food for thought

After last years tsunami hit our lives. I had been in survival mode. One crucial thing that happens after survival mode is you hit I have to deal with what just happened mode. And it is hard. It is hard to mentally breakdown the unimaginable. But I have been. I've been really focused on myself. And no I do not mean focused like I am the only person whose happiness matters type of focus... I mean like taking care of myself and working through emotional baggage. So I can move forward in life. The good thing is I have been here before. And after I was in this ever so fun vulnerable spot, I did move on and I did find peace and happiness. I have had a LOT of anxiety lately. And I am working on overcoming my fears. Oddly enough one thing like clockwork that I struggle with is people's perceptions of me. I am a people pleaser. So I am having  to work really hard to not care what others think. I also compare myself which is hilarious because apples and oranges baby! A quote that I have always stuck by is, "it's not about your scars. It's all about your heart." And I am finding that to be truer then ever. We get knocked down in life and others might at times make you feel bad about this. Bad that you're not doing everything the way they are. But know in your heart where you sit with heavenly father and what he wants you to do. Listen. Follow his direction and his guidance. That will get you through the storm. Stop and take a pause for yourself, quit pleasing others, (because they can't possibly know. Honestly. No one can actually go through what you're going through. It is just a fact. Compassion, yes compassion is always there.... but it is okay for people to not understand what you're doing in the moment.), and follow heavenly father's direction. That is a sure way to get to where you need to be. Because we do not need to be where the Joneses are, we need to be right where we need to be in this moement of our lives. Because we are all put here for different reasons to learn differently. This is the pathway home back to heavenly father. So goal is not to worry about what others are doing or think you should or shouldn't be doing, just do what you NEED to be doing. As long as you're following God and his plan you are doing what needs to be done. Heavenly  Father spoke to me this past week and told me this because I was consuming myself with negative energy. And he knew all I was doing is adding more pain then necessary trying to be quote on quote "perfect and pleasing". It is okay if it looks odd to others. Especially in my case I have 10 chronic illnesses. Why would the picture of me look like some one else, who does not?. Exactly it won't. No matter how hard I try to fit into a cookie cutter, I never will. So I am learning to embrace my differences because they make me me. They do not devalue me or take away, they build me up. We are all different in different ways and that is the. eauty of it. Just some food for thought this morning -Chelle.

My PSA announcement.

I was just scrolling through social media and there is so much sinful and hateful actions spewing from the internet. From person to person. It is every where, the news, and social media. Every where we go people are talking of politics and the ways of the world. I can't help but feel sad for heavenly father for his hands must be very full. There is so much turmoil in so many different fashions. And then I am grateful. I am back home. I am me. And I realize maybe just maybe I am so chronically ill to protect me from the world. Maybe my trial is a pure blessing at the end of the day. I spend less of my time focused on worldliness in my lifestyle. I spend a lot of time alone and it really stinks in ways but there are moments when I realize, I am protected by God. Maybe it seems odd that I would think this way but I feel I am being protected nonetheless. Remeber,

Teach me to walk in the light of his love;
Teach me to pray to my Father above;
Teach me to know of the things that are right;
Teach me, teach me to walk in the light Come, little child, and together we'll learn
Of his commandments, that we may return
Home to his presence, to live in his sight--
Always, always to walk in the light.
Father in Heaven, we thank thee this day
For loving guidance to show us the way.
Grateful, we praise thee with songs of delight!
Gladly, gladly we'll walk in the light.

 Choose the harder right then the easier left for the outcome will be oh so much more rewarding. -Chelle

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