Resting in him

Because sometimes we just need a reminder after being up sick all night. That fear is the problem in the equation. And that the antidote for fear is faith. I know God speaks to me through song at just the right time when my heart is too heavy to bear much more. I slept a few short hours and woke to, Lillies in the field" playing through my head. A definite promoting to listen. An hour later I find myself 9n tears and filled with what only could be his love and peace. Nothing on this earth could offer such peace and love. It is a gift and I am thankful for each and every tender mercy I get here and for the sweet direction and guidance of my one and only Heavenly Father. The only one who truly knows my heart. -Chelle

Another diagnosis

This past month not hip has been bothering me and I have not been able to walk and I have been aking up in pain. My pcp did some basic tests and found I have degenerative disc disease in my lumbar spine. This is scary as I have a herniated disc in my mid back and a history of spinal fluid leaks. The thought of my spine falling apart makes my stomach sink. I think something else is wrong with my hip as it effects my range of motion and I have experience with sciatic pain and this hip is just different but you know how docs dont always listen to me. I am seeing my neurologist at the end if the month who specializes in EDS a collegen disorder I have that causes my joints to dislocate. We think the spine has been there and they stumbled upon it but the hip is likely from my EDS I have likely injured it via dislocation. So frustrating to keep finding problems. My heart hurts when I think on it too much but I know God has made me this way for a reason bigger then myself. I hate being sick but I have to trust that the Lord can heal me or help me through it. I have to believe my lifeguard walks on water so I can't drown. And he does so I know even when my heart aches... I am okay.

So I will put on lippie stick and curl my hair because feeling sorry for myself will never help. Faith is bugfer then fears. One day at a time -Chelle

Fear is a liar at 4 am

I have been struggling with severe to crippling hip pain for a good month now. Maybe even longer. I even had acupuncture for the first time yesterday and it helped for the day but something is happening in my sleep. This morning I woke up with excruciating pain and I pushed through it to get to my pain meds trying not to wake husband. As I hobbled back to bed I wondered why this is happening. I mean  I have been unable to walk from this it is so bad at times. And the test of the time I hobble around like a pirate. I am always trying to figure things out because when something is wrong with this body I am normally the one who does the figuring. I have a team of good doctors who I know will try. .. but why do I wake up from being I'm such bad pain several times a night? What is causing the pain? Is it Ehlers-Danlos syndrome? Am I hyper extending and dislocating in my sleep? Are we really going to start going down that road? Before I knew it my brain was like a bee hive full of thoughts buzzing around in my head. And I had a song stuck in my head since I woke up. Didn't pay any attention to it. Hello I am in too much pain to care about a song stuck in my head. Then in the midst of a beehive anxiety riddled thought I hear, "fear, he is a liar He will steal your faith. Rob your happiness." As I am on the brink of I cant do this tears... I found myself crying tears because I knew in that moment I was not alone and heavenly father was telling me not to be afraid. He put that song in my head it was my job to listen. And I felt the comfort of never being alone in my trials. Knowing that I have an all powerful God and a savior who atoned for my sins. Because of this I don't need to listen to fear. Or worry about my disease riddled body. Or worry about getting off medications that are so hard to get off but I've been doing. When you die they put you on a lot of things and for the past year all I've been doing is coming off medication after medication and it has been a trial of it's own but I know the reward will be worth it
I promise in our darkest hours we are never alone. When we are in pain he is there if we just turn to him in faith he can relieve the most excruciating moments. He can take that sharp edge off of it and replace it with perfect peace. But we have to be willing to listen. -Chelle

Post Covid Update

I hope every one have a blessed and fun fourth of July!!

 We just hung out at home with quarantines and lack of events around town. It was a simple day filled with grilling and chilling. 

I have been off quarantine for almost a week. I have gotten better. The Covid is gone and my POTS is still bothering me but not it seems to be coming along. I also would say my tummy (gastroparesis) is coming along as well. Definetly getting stronger. The heat is also playing into my worsening POTS symptoms as heat will ramp POTS symptoms. I do my best to stay indoors in the summer, unfortunately. We made another trip to the doctors yesterday in Phoenix. I survived, it was hot. I do not like covid protocols. I do not like them at all. Anywhere I do think some precautions are necessary but having covid myself people are taking it way to far in my personal opinion. I have not been out in months and it is a completely different world out there. A sad world of fear. What happened to faith over fear? I pray for God in our lives. I pray to see his hand in mine and others to see his hand in theirs and to stop and recognize him. Our life guard walks on water we have no need to be SO fearful. Smart is fine. Some precautions are fine. But fear is not fine. I will continue to walk in faith knowing that my redeemer lives. Fear is a choice. He is there we will have a plan Devine and lessons on earth to learn. We can not run from those lessons because no matter how hard we try they will come anyways if meant to be. It's not a  punishment it is just part of our earthly journey here on earth. I got sick for a reason (chronically) there is a plan in it and no matter how hard I try I could never run away or stop it. So now I choose to have faith in God's plan. Have faith in the way he made me. To have faith to not be healed and to realize this is no punishment it is a blessing. The way things were meant to be. I will always fight and try to heal don't get me wrong this is not a post promoting sickness or to not try to prevent sickness. We all have free agency. But a post of faith versus much fear I see in the world. I feel we are crumbling in fear and crippling ourselves when I look around. We are stronger then our fear with God I can attest my biggest fears have been my biggest blessings in disguise. A thought from -Chelle

I have Covid.

I found my new anthem and it is perfect. https://m.youtube.com/watch?v=Q1xlpcu3gsU

yesterday I found out I tested positive for Covid19. I started getting sick 2 weeks ago the first week was mere fatigue and body aches
 I honestly thought my thyroid was low. The following week I woke up with a sore throat, nasal congestion. And fevers. The next 24 hours worsened and I started having GI issues and worsening fevers. Headaches. It has so far been in my opinion like a long drawn out version of the flu. The cough is very dry. My lungs have hurt but mostly just uncomfortable and dry feeling. Vitamin C,D, and Zinc were prescribed and they make a huge difference I suggest everyone be taking them now. I got this because my husband is an essential employee. I have not been out in public at all for months.  The biggest fight was continuing my ivig treatments and I did have a slip into catatonia one night. Over all I feel blessed and pray I am on the wns of this covid and can move forward. Dont loose hope. Remeber God is your anchor and our life guard walks on water. I've been listening to hymn mash ups every morning and that just makes life so much better. It is truly medicine for the soul. I will trust in you -Chelle

Update Covid is improving may even be gone but it has made my POTS worsen and my autoimmune encephalitis is flaring I think. Big prayers tomorrows dose of ivig knocks it out.

Peace in Christ

This song has been repeatedly playing in my head and I find it no coincidence.
https://youtu.be/R46J-GjbRWA

My heart is heavy and the world is defeating so I turn to Heavenly Father and he sends me church talks. And I listen. And make no mistake each prayer I get, an answer of guidance during these trying times. It is okay to be afraid, hurt, heart broken, or whatever you are feeling... but there is always peace in Christ. One thing I know time and time again... when the world is a heavy burden and you have no control. There is peace in Christ and our Heavenly Father. Time and time again I find myself in an out of control situation in life. Whether it my health (the typical) or worldly events. I promise you if you turn to Our ever -loving Heavenly Father he will calm your storms and guide you through it.
 Choose to be a light. Choose goodness. A soft heart. Forgiveness. -Chelle

It is well

This week it has been well with my soul... I am moving mountains I feel in my life in the first time in a long time.

Tonight,I lay restless and sleepless staring out my window from the couch. Looming out the blinds to the sky. Wondering if I will ever fall asleep. (Just another lovely side effect of IVIG.)

This week has been full of blessings and Heavenly Father's hand is a definite in our lives right now. My Angels round about me to bear me up. I have had so many tender mercies and I feel so comforted in that during this trying time of finding my new normal. I am trying to work again and being disabled that likely will always be a trial of some sorts. But I have been working hard and feeling good. I am tired but good and tired I can do. My biggest struggle has been waiting for everything I've worked so hard for to come crashing down on me. Well that or the next big life altering tornado to blow through but that is fear not faith and I have gotten several spiritual confirmations that this is not the case. When you are constantly trying not to drown you dont know what to do with yourself when you hit dry land. So this time is to grow and be happy. Faith in God's timing and HIS plans for our family. Work is bringing physical hardships but is so rewarding and fuel to my soul. It's nice to feel productive again. I just can't get over how blessed I truly am feeling. Even if all this does not work out I will have tried my hardest and there has been lots of feeling of the spirit and that is priceless. Even if it ends up being temporary. But it won't be. Xo - Chelle 

Chronically ill & Covid19 Chroniciles 7

Pulled out the laptop early ...

It's my last morning of the week to sleep in and I am up in pain but the sounds of the little birdies tweeting outside first thing in the morning while the sun comes up makes it worth it.

Oh, did I mention I changed my hair? Tubes in my chest for ivig and earphones in my ears for work training. I am  working quite possibly harder then ever at life.
Last week was a good week. Week 4 of exercising a few days a week. I have been slowly building up and that is a major thing for my body. I got an unexpected phone call from my home health pharmacy letting me know my sterile flushes had been recalled days after using one of them to access my port and it was drippes into my sterile field. Unsettling. This puts me at a sepsis risk.  That picture above with the needle in my chest that goes to the central line straight to my heart. Well... it may have been dirty. That is bad. But there is no going back now.

I think one of my asthma medications that I have been on since I was a measley 5 years old has started giving me some nasty side effects. It was an easy choice to remove it this past week and so far (knock on wood side effects gone.) Down side, it was the main medication that controlled my allergy induced asthma. It is allergy season and I had to go dig through supplies and do a breathing treatment in the first time in years. I am missing my old doctor more with every passing day. A doctor who understands all my illnesses and knows I have good knowledge too and works with me as a team mate. It's been a hard year for me without this doctor. But I keep pushing along and waiting for a hopeful return. And it makes me thankful for the others I have in my corner ready to fight with me when it is needed. My anxiety got really bad but seems to be leveling back out. I have hospital PTSD from some pretty awful stays with some pretty awful abusive care in the past. And I had the swift realization that I could be hospitalized alone. This sent me immediately into freak out mode. But I've taken myself home and my worries home to My Savior. Through him I can do all things and I need not to worry myself sick over the uncontrollable. We are in his hands. And I know that.

This weekend me and the hubs had some much needed down time. We have been fighting through these trials the past two years. Sometimes I get mad it is not fair. We were robbed. My health robbed us of being newly weds. It robbed us of so many good times. It threw us into survival mode for the longest time and is the big green monster on our backs. Constantly waiting for it to spook us and not knowing when. We watched a movie I did not know was about cancer and of course the tears streamed. The pain with being critically ill and the situations you endure. The pain of your hair falling out and in munchausen gaining 40lbs in 2 weeks from the drugs that barely kept me alive. While I was dying I was dying inside too. There is so much pain wrapped up in it I'll never be able to describe fully. I just wanted to watch it because Shania Twain was in it. But it hit too close to home and I still can not shake the feelings. I may have well watched brain on fire. And that makes me upset that these movies bring up so much emotion because I have been through so much unbelievable movie making situations. But then again, I bring it back home and remeber God has a plan for me. And it must be pretty special to put me through so many things. Trials are life's biggest blessings. It just doesn't always feel that way in the moment. That is why Cornona is so scary for me. If you are healthy take caution. Doctors can not fix it. We as humans think we can run to doctors and we will be fixed but I promise there is a sad world when the doctors don't have tools. They don't have the answers. You will be left broken. And it will be your job to turn broken to beautiful and it won't be easy. And you will never catch a break or be able to take 5. So please just be patient. It is hard but the alternative I assure will be even harder to endure. I guess I just had some thoughts rolling around in my head this early morning.

But even though horrible unimaingable things have happened to us, we are still strong. I am still here, and we still get to laugh and that makes it all very worth it.

Last week was Husband's birthday. Can I just stop and say I am so proud of this man! He is so awesome to me and loving. He works so diligently and always outs his whole heart into everything he does. He always can make you smile or laugh too. He is good oh so good and I hope he had a very happy birthday. I've been locked up at home but we bent the rules for birthday and let immediate family join us for dinner and goofiness.

I found this gift to be quite fitting for the year 2020. 

It is safe to say Mr. Wrecker partied too hard. 

Oh and I also baked breat in my cutest bread pan ever! It is called sweeties if you want some stinking cute dishware. 

It made me reminisce baking bread as a kid (well I just sat on the counter and "helped") while my grandma and granny Hatch baked bread every week for practically the whole town. I miss that perfect smell if her house full of fresh baked bread and cinnamon rolls. And of course eating caramel flavored candies our of the candy dish. Warm memories I will never forget...

I love my family and I hope you are all well and saying safe out there. Much love -Chelle 

Covid19 & Chronically ill Chronicles #6

My morning thoughts.

I have seen a lot of arguing over if we should re-open the country or not. Go back to normal or stay put? I have seen that some people feel their freedoms are being taken away and some are simply just sick of it and ready to get back to life... So I am sharing some of my own personal perspectives. I have been in the trenches of  ill health and I feel comfortable saying I know a lot about it. That being said I won't say I am right or my opinions are perfect. They are simply the way I view things and maybe another perspective for others to consider.

For years I could not get out of my bed let alone my house. I had to quarantine several times over the years and basically for years. I could not do what I wanted. I was too sick. I could not go out to eat. I couldn't socialize. I could not go do the errands I needed to do. I could not work. It was not the government stopping me. It was my own body. I could not draw a paycheck even though I had medical bills and needs just the same as any other human adult. I did not get disability every healthy person raves about as an answer for over 3 years. And then I was to live off $700 per month. I had to live at home with Mom and Dad and I will always be grateful for all they did for me during this time. They took care of their adult daughter. And for that I am obviously fortunate.

So WHAT DOES THIS HAVE TO DO WITH COVID19 LOCK DOWN? Sometimes in life we do not have control over things. The important things like paying our bills and feeding ourselves. It is truly scary. We do not know what to do day to day and there is not a clear cut person or thing to help us and this is scary. But what happens when we open things up too soon? The virus spreads like wildfire. Now our loves ones have it. Hospitals and ERs where we feel safe and can be healed are turning us away because they are not equipped to care for us. ALL the ventilators are taken, already in use. Who lives and who dies? Sorry we can not treat you and you or your loved on is now gone... They also know very little about Covid19. Is there long term effects if you get it? Take it from someone who works hard everyday to get up and be semi human with a defected body. There is nothing worse then when a doctor can not fix you, or treat you. A broken body leads to a broken life and will effects every single aspect of your life. You can not take a vacation from your body. So when you just can not handle another day, you will have to.

Sure you can choose to stay home if they open things up. There will be obvious repercussions. But majority of pole live with an essential worker and if this thing spreads like wild fire that essential worker will bring it home. Now staying at home has not protected you because people could not be patient for just a while longer. This is not a political post this is a listen to the doctors post. I don't claim to know it all this is just and only MY perspective. the health is a crown only the sick can see... Sometimes we just have to do what we do not want to. IF you are LDS listen to the Prophets and leaders words from general conference, take comfort in them. They said "This will pass" "Be patient" they guided us to pray, so pray with a prayerful heart for the right answer for you. But do not let fear be your actions let your decision be based on faith and the guidance of the Lord and our Savior Jesus Christ. And you will never fall. That is a promise. -Chelle

Covid19 and chronically ill Chronicles #5

Easter was BORING as Husband worked but super blessed. I am so thankful for all of the sacrifices Jesus gave for me and my family. (Including the ultimate sacrifice) I am thankful for the atonement and the knowledge of repentance. No matter how lost you feel if you feel so, remember you are never alone and our heavenly father walks with you in not only happiness but in times of trials and pain. Jesus Christ atoned for our sins so we can be cleaned and have hope.So we could learn and grow, make mistakes that we would learn from, He walked alone so we never have to. Never alone, never alone.

A needle in my chest and an IVIG infusion is my new normal way to start my week. Some times it is nice to have a down day even though I am sick... Some times it totally is crummy because I am feeling well and do not want to stop for a minimum of a whole day a week to feel sick, once again. I have been fighting harder then ever and working out for 3 weeks straight now. It is good but I feel like my body is trying to flare up so I am taking the day off today to rest and reset.

I was cleaning my Kitchen and came across these Norwex wipes! They are the baclock. I ordered them last fall and stuck them in a drawer and forgot all about them. I have given them to Husband to use in his patrol car in hopes they help him not get sick. They are convenient and just need water no chemicals for a quick wipe down. Obviously we do not know if they work for viruses particularly Corona but, they can't hurt.

My house is messy and I do not care. It is messy but clean. No germs just messiness. Excuse the awkward living room mess and displaced furniture photo but I had just opened my order of new baking dishes... I was too excited and had to share. I LOVE the Pioneer Woman. My kitchen is complete finally. Shopping online is my only sanity some days. (wink wink)

I told everyone I would do an update on naturopathic doctor. I have not been able to really start with it because of Covid19... I chickened out and did bare minimum. I did find an answer to my burning bones. I had low Calcium Fluoride. Since I started this supplement after being tested I am happy to announce no more burning bones! This is major for me! As a result I have been more mobile and physical.

Well that is my week super boring but that is the way I like things, When things get not so boring it is usually not so fun for me -Chelle

week 4 Chronically ill Covid19

Another week has passed. Not much has changed for me anyways. I am stuck at home and have gone on a whole 2 car rides this month. Luckily I am used to living like this for the most part. The hard part is not being able to go to the grocery store. That is what is driving me nuts. My stomach is better and I am just taking a wait and see approach to things. I have been working on hunting down masks for husband's job in hopes he can be more protected. Proper masks matter the N95. If anyone knows of anything feel free to reach out to me. The allergies are real. Holy springtime they have hit everyone super hard this year it seems. Besides that we did picnic in our teeny tiny yard. And I enjoyed every sun shinny minute.

I got a new toaster.... (Is it super weird I am so excited over a toaster?) It matches our kitchen perfectly. My kitchen is my favorite place in my house. It is where I feel comfort of cooking homemade recipes that have been passed down. It is where I cook our nightly dinners and feel I am doing my spiritual duty as a wife. Even if some of these nights are frozen pizza from a box. It is where i start my day every morning unloading the clean dishes from the dishwasher and drinking my coffee full of protein powder. There is something about my kitchen that just makes me feel good.

General Conference was wonderful and brought much needed insight. I love General conference. Pajamas, cinnamon rolls, and a lot of Heavenly Father's spirit. It is a comfort to know these hard  times will pass. Though as you all well know i am an advocator of hard times and trials deeply enriching and bringing the biggest blessings into our own personal lives. Hard times build us stronger and allow us to learn lessons that are needed for the next life. Through trials there are always personal gains. Trials are life's biggest blessings! When we are burned down to ashes that is when we can build ourselves back up stronger then ever.

Rough morning

I could use prayers during this crazy time... my body finally heard about Covid19 and decided it wanted to play games. 

I'm having a rough morning. I thought I had a stomach bug but I have been sick for several days and it seems more serious then a stomach bug. I would have been in the ER if it wasn't for Mr. Coronavirus being worse then whatever is wrong with my bowels. Luckily I have been able to slowly hydrate. And always keep powerade on hand for these moments. I've passed out several times while home alone and this is scary. I am in excruciating pain constantly and taking lots of meds to combat it. I am supposed to be having a colonoscopy but has gotten put off due to cornonavirus understandably. My iud did expell last month so I truly thought this had to do with it as it only happens on my cycles. But no iud and it came back this month. I alonf with my doctor have a huge suspicion that it could be endometriosis growing on my bowels. (I did reach out to a friend who has been through this and it matches symptom to symptom. And timing) This breaks my heart a little. I do not need surgery right now. I have worked SO very hard to find this stability within my health and surgery can flare me bad. It can also go perfectly fine but it is always so scary I am so high risk so many factors are included not just during surgery but after. The hospital my lovely favorite surgeon is at, (one of the top surgeons in the country for this and the only one I trust to do these operations on me repetitively) is the very same hospital that did not believe I had autoimmune encephalitis last year. The neurologists don't believe me and don't  believe my neurologist who treats me. They told my neuro they knew I was severely sick but didn't want to do anything for me. During this hospital stay I rember very very little. My memory is wiped. But I clearly remember Heavenly Father coming to me and giving me the option to stay here on earth with my family but it would be tough or I could choose to keep fading  away and come home again. I chose to stay for my family. I was in so much pain. That I do remeber. My memories during that stay the few I have are also of me looking down at myself. I was on the edge of death and literally being called crazy with a clear diagnosis by another neurologist of Autoimmine Encephalitis but they wanted their own tests which took weeks and it's more complex then a test. Plus months prior I tested positive for it. There was no questions.... And kicked me out before the test results came back. I dont want to go through that ever again. I have never been so scared to think of a possibility of surgery in my life. It is a tough time to be chronically ill But I sit here praying to know which direction to choose. Obviously I would wait out the coronavirus to clear up best I could first. My heart is a little concerned and heavy. This popped up on social media at just the perfect time as the perfect reminder that heavenly father loves me. He knows me. He is helping through this. We are indeed never alone if we look worh willing eyes and a soft heart. -Chelle
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Week 3 Covid19 Quarantine

This dog is always at my side when I need him. He is so sweet and comforting when I am down... I don't not know what I would do with out this pup and his love.

My guts are defective today. I had IVIG yesterday and it is supposed to treat my severe Gastroparesis as well as so many other conditions, but apparently that did not happen. But as long as my brain doesn't flare I truly can't complain. I am in so much pain. And I am a little sad and I cried for a moment in pain. A song played in my head, "you with the sad eyes you don't need to worry" and I immediately felt comfort by the spirit and I knew in that moment the lord is aware of my struggles. He knows my pain and he knows my suffering. He did not lighten the pain but he gave me comfort to get through the storm. Coronavirus is scarier when you have over 10 complex serious comorbidities. My heart is a little tired today. I am tired of being in pain today after a painful day of IVIG yesterday. Sometimes the medications I take to combat the side effects get to my head and make me weepy and upset. But it's the price I pay to stay here on earth. God gave me the option and I chose to stay. I will continue to fight because I know I have more to do. I am not writing this blog for others. I am writing it for me. I just hope it helps others along the way. We can be sad we can feel and that is the beauty of it. This way when we find happiness we really know what happiness is. God is in control. He will never leave you alone. Even when your crying in your bathroom he will be there for you

Last week we baked cookies I was weak so it was with the help of my handy dandy stand mixer and Husband. They are so yummy (not today. No food for me today) We are finding activities to try to stay positive so I do not go stir crazy. I feel so vintage lately.

I am thankful for this guy and his ability/willingness to administer the sacrament in our little home. We definitely feel blessed by this and i know I feel much peace from this during our time of need. The Lord is amazing in his ability to always provide for his children and be there for them too. Update on how Covid19 is effecting me: all appointments are by telemed only. I can not leave my house and haven't in weeks. No visitors. I do have a nurse who comes to my house for a day a week and infuses my IVIG. I asked if he gets sick what is going to happen? To which he responded, "I don't know. No one has talked about it in the company" (nice) so he showed me the few things I didn't know how to do just in case. This way I can infuse myself and luckily I already know how to access my own port and give myself iv meds. I've never been more grateful for my independence in my healthcare. I always tell people to be as independent as possible. Not only is it healthier but look what it can do for you in a crisis. Advocate for yourself fellow spoonie and hang tough -Chelle

1st Anniversary Toilet Paper

This year for our very first wedding anniversary, Husband figured out it was the paper anniversary so along with my gift he included some toilet paper. He found it very funny and I was not ammused in the least with this gift. I even wanted to send it back but he wouldn't let me. It is likely a memory I will never forget. Reading through my emails to find a purchase for anniversary toilet paper that was ordered off my account. I was definitely underwhelmed. It read, " Happy 1st Anniversary My Love. I love the (poo emoji) out of you." I literally could not believe what I was finding. I almost sent it back but did not want to cause a tiff. But you can imagine the text my Husband got right away.

Just a few short months later we rush to the store to hope we can find toilet paper before we run out and I remember a few weeks ago as I decluttered our house asking, "can I throw this lovely gift out." holding a roll of decorated toilet paper in my hand. While at the store full of bare shelves I thought to myself, "at least I have that anniversary toilet paper at home. How ironic?" So, thanks for the fancy toilet paper for my first anniversary babe. It couldn't have been a more spot on gift for the year if you tried! I thought I would share the funny in this story. It was the best worst gift I've ever received. -Chelle

Covid19 update #1, Rural AZ.

My mantra of the week has been, " It is well with my soul." I found this image across Facebook and it stuck in the midst of panic.

There has been comfort in spring cleaning my house this week, plus a full exercise. I find I worry a lot less when I stay busy during the day. I love that I have the ability to work from home.

My poor couch has been very used since the begging of our marriage. When you have conflicting sleep schedules with your spouse and chronic illnesses your couch takes the abuse.

I did find out through my nautropath that I have a calcium fluoride deficiency. I think it is from the harsh steroid use. So we have been supplementing and within a week my bones have nearly stopped burning completely. Due to this I have been more mobile and physical. I was even able to work out this week! BIG DEAL FOR ME!!!

I am using a lot of supplements in my liquid diet and that is also making a huge difference. (I am using Lady Boss Lean Vanilla Cake and Chocolate Orgain.) Slowly, but surely building this body of mine to be stronger. I LOVE seeing positive results in my health. It has truly been such a long recovery this time and still continues to be. The Coronavirus has taken my little social outings away but I have not gone backwards. this is not a setback.

                                 Though I do miss date nights....

Things have gotten a lot more serious in my area over the past week. In my last post, I was much more relaxed about the current situation because Covid19 had not hit our county yet. However, it did hit this past week. There has been two confirmed cases. I have been contacted by all of my doctors to lock down and stay at home. I have over ten illnesses and a compromised immune system. I am currently taking immune suppression therapy medications to treat my autoimmune diseases. Luckily for me we are tapering off but this is a process that will take almost a year if all goes right and there is no guarantee I will be able to quit them. I also have asthma, and scar tissue of the lungs from being preemie. So I am being extra cautious. With having healthcare workers in my family I have had to social distance from them. The hardest has been my Momma and knowing that I likely won't see her in person for another month. I am so thankful for the wonderful blessing technology is at this time. Husband can not stay home in his line of work. He will always be on the front line for his community which means exposing himself to all illnesses. He has a special mask. We have implemented a system to help protect me. He immediately removes his uniform and puts it into the washer upon coming through the door, then showers. We disinfect all surfaces regularly and as always I sanitize my dishes in the dishwasher. I also have implemented telemedicine in all my healthcare needs. I will say My largest struggle is to not be able to go to the grocery store and buy groceries and needs for my home.
 
The anxiety did hit hard one fine day last week when I realized the seriousness of my conditions combined with the Coronavirus. The poor understanding of my care and conditions in general let alone compacted by the Coronavirus. The fact I would not be able to have visitors to protect me and explain to the doctors my differences in care in the case something happened as visitors in hospitals are rarely allowed. I have PTSD from prior awful hospital stays and it is something that shakes me to my core. So I continue to pray. I pray harder. I hope for the best and for protection and then I get up and keep going forwards. Sitting down and panicking is not going to help anyone. It simply hurts you to panic. So my advice is turn off social media. Set boundaries of things that trigger you on social media and the news. I promise it will help. Seek the Lord's guidance at this time and when it seems lonely and too much to bare bring it to him. He will help you in your times of need. There is always angels around us lending helping hands.

Something that has literally been life changing for me is listening to conference talks at bedtime. I fall asleep to general conference talks and it never fails that the lord brings just the right talk at just the right time as to what I personally am needing to hear. I know Heavenly Father is hearing my prayers and that he is answering them through these talks. It is crystal clear. I suggest to you guys to listen to old talks as well for they can bring answers and much peace in a time such as this.

We are all in this together. Hang tight guys we will make it through just as many have before us. Pray for this storm to pass, pray for our temples and churches to be able to be reopened, pray for peace, pray for your personal needs, talk to Heavenly Father. Have hope and take things one day at a time. Lots of love. - Chelle

Coronavirus Rural Arizona

With the recent pandemic if the Coronavirus people have been curious as to how I am doing and generally afraid for me. I am of today fine. It has not hit our county yet. So I am far more concerned over a common cold or flu. I am not panicking. I am living life as normal because this is my everyday life. I don't go out to large crowds ever. I stay home much of the time. I work from home. I wash my hands like crazy and I take the best care of myself I know how. So as far as changes go it is just staying in a bit extra but literally my life is the same. I did brave the stores yesterday as we hadn't gone grocery shopping in 3 weeks. I have been down because my iud expelled. If it's going to happen to someone we know it's going to be me. So I was pretty bad off due to this because I went two weeks assuming it was my endometriosis/adenomyosis acting up. I have severe adenomyosis. So when you're chronically ill sometimes it takes longer to realize there is a problem. So due to this we had bare cupboards. My husband would have willingly and happily gone grocery shopping alone but I am feltnlikenthisnwas something that I needed to do myself... and I was physically up to it after some extra meds, some liquid nutrion, and several salon paas pain patches. I went in with faith that I though should be extra cautious, the lord can take care of me. I prayed to be able to find the proper groceries and medications that I require and that my family and I both would not  fall ill and I left it with my faith that the lord. He would allow me to provide for my family. My role in life. I had a partner which helped cut down on time. I did a grocery order so I didn't have to physically go in the store as long. But we needed more and they didn't have a large portion of my order. I was successful with my patience at getting what I needed. I even got one of the last toilet papers from a worker unboxing about an hour after giving up hope. I was out of TP... not hoarding. I do not believe others should be hoarding it is not helping one another.  Itnisnhurtinf one another and I am an advid seeker of being prepared but that doesn't mean harming others. We are to help our neighbors in time of need. Though at the stores tensions were high I reminded myself christ like love. And you know what happened despite ALL those people in the store that were grumpy and on edge. I smiled, said excuse me, and most responded well to this. Simple christ like love. My family and I kept eyes out for each other and bought goods we needed for each other that we were out of so we had a whole team shopping for our family and that also helped us all get what we needed* suffienctly. It was weird to see bare shelves  but I do a 75% all liquid diet so I was super worried that I wouldn't be able to find my proper diet. But no one touched the nutrtion drinks and protein powders. Me and my husband have discussed we will be making  our year supply in the form of meal replacement powdered drinks that we both like... so not to waste but it hydrates you and you get a rounded diet. It also has a long shelf life. And if my gastroparesis is bad I can run it through my feeding tube and actually absorb it. My panic came from my gastroparesis and absorbing and my special diet. But like I said no one touched that nutrtion enriched dry storage. (But I hear adults are buying baby formula without babies. They are buying it for themselves and there is not enough nutrition in this you guys. Save it for the babes they can't eat  other things. Buy ensure or other meal replacement drinks!) Just an idea for others. Luckily we had a good supply of bottled water prior to this. And are able to share it with family. I feel my prayers are heard and answered. Me and Husband have been extra blessed recently and we feel so grateful in our hearts and look forward to our future for the first time in a while. Being so sick was a crazy way to start a marriage and hopefully now we get to enjoy and live our life a little bit more. Hopefully reach some goals. Families are what is important now and this past month almost all of my family members have had close calls with fragile life. But the lord protected them fully. Jusy like I pray ever single day for him to. And it has been a  Great reminder of what is truly important. Remeber not to panic and have faith over fears. Follow your promptings and the church's guidance. Stay well. Think of other's well being besides your own because it matters too. I promise I am trying to stay well.  -lots of love, chelle

Oh So Good

Tonight is a quiet night in my house. Just me and the puppers curled up on the couch with the heating pad. Endometriosis is still not my friend. 

So I have been reflecting on my week and I have been blessed in so many ways. I feel lucky with simplicity. I had a fun weekend though it has left me physically drained. I feel like me more and more as time passes. 

I actually wanted to go to the store and buy clothes again. I am having enough energy thanks to tube feeding to get up and get ready. To live. Tube feeding is truly a blessing in my life. There are moments when I struggle because it is obvious to me that my brain is not the same from my autoimmune encephalitis. But then there are times I feel I am healing. IVIG is becoming the normal and  no longer something to grieve. A day or two a week of crumminess is worth feeling better. (Now that I can see the results.) I did get exposed to a cold today so feeling very nervous about this. I pray one of my many IVIG donors have had this strain and I will be protected. It is in God's hands and I choose to rest in that. 

Something that is comforting to me with my new crazy hair is hats. I used to feel bald but now that the hair is growing back it is just wild. It sticks up all over. So I wear hats. It is cold out so hats are comforting. Baby steps. That is my advice when coming out of your cocoon. Baby steps and faith in God's timing because it's not meant to be done in yours. Allow yourself to grieve and heal. Have patience with yourself and pray often -Chelle 

Will You be My Valentine?

Valentines day was a blessed day for me. I got to get out of the house and just enjoy being happy with my husband. Truly simply happy. We went to dinner at a local restaurant the night before and went and bought valentines after. Husband is so sweet he went to the store (his own idea) and instead of buying me flowers... boy did he buy me flowers.

He bought two bouquets of Roses and several other pink flowers to go with it. Then he came home and took the time to sit patiently and cut them all and arrange them in a vase until it met his standards. He is so truly sweet hearted some times I can't get over it. My clothes still do not really fit and I haven't wanted to buy more so I kinda felt sad getting ready. But I chose happy. I chose this and because of this I was. I had the best time I have had in forever. And a stranger even stopped to tell me how cute my outfit was. However I think I was merely beaming full of the love my husband holds for me. Maybe I won't ever look the same but I am still me. And I am still loved. We are all more then our physical selfs. Let joy come in. Let beauty be on the inside.

Today our community has endured another tragedy. A local Law enforcement officer was killed in the line of duty early this morning. My heart aches and goes out to this family, along with my sincerest prayers. Some one else endured my worst nightmare. Today I hold a heavy but very grateful  heart that that could have been mine. I pray you all join me in prayers for this officer's family in their time of need. 

On the health end things are the same. I just completed ivig for the week. If I miss a feeding replacement feed my body burns. No matter how much I eat. Which points to malabsorption of solid foods. So working on this. I have started testing with a naturopathic doctor and will keep you updated. I sent a hair sample off to the lab to be tested. Maybe it will offer some releif and more healthy days to come. 

           

P.S .    I love that we are goofy    -Chelle 

I do not know what to say, but I'm ready to talk.

I made it to 27...

For the first time I find myself crippled. I do not know what to tell my readers after this year of trauma. I am hurt but I am healing. God is with me every single step of the way. But I've needed time to be alone and deal with the massive changes in my life. I have been in more pain this year then I've ever experienced. I have more fears and trauma to deal with then ever. BUT Heavenly Father is speaking to me strongly and I will get better. He wants me to put faith in front of fears. And though I feel like I only have negativity to share right now or depression.... I know I have so much more. I was stripped to the core this year but I am gonna make it. And if I can make it through almost dying a horrible death, turning it around and healing a brain Injury, healing from the trauma of not only loosing my physical self but not being recognizable for months. Then you too can make it through your trials. I am not the same but I am SO much more then my physical appearances and my physical abilities. God gave me the chance at life for the what 4th time?
Something I have not spoken about is when I was in the hospital in January 19. The month I do not remeber. Heavenly Father did give me the option to fade away and come home or to stay but it would he hard.  And all I could think of was my family and my sweet husband I had just married two months prior. I didn't have to think. I was staying. AMD my sweet grandparents particularly my Grandma Pearl has spent a lot of visits with me. When I needed it most. She told me I did not have to be so brave during my last conversation with her about life right before she passed. And when I feel not so brave and tired. I know she is there for me.
 And I want to make it count. I can feel God's hand working on me in my life right now though things are still pretty hard. God loves us each and every one. No matter what. No matter how broken. No matter how mangled. No matter how soiled. He will ALWAYS love us. And at any.moment in time if we reach out to him, he will be there reaching out to us. My favorite scripture quote is D&C 84:88 and I have had heavenly father at my right side, and my left. His spirit has been in my broken heart. And definently mine Angels here on earth and the other side of the veil have round about me to bear me up. Make no mistake. Heart ache took over and physical pain and anguish but Chelle has hope. I am making progress. It is not in my impatient time line it is in HIS patient time line. And that's been a trial. Some times I just think to myself, "if only I was more patient maybe I wouldn't have to go through these trials." Lol. No matter how distant we feel we can come back home in a heart beat. I promise these things humbly in the name of jesus christ amen. -Chelle

I am loving this song right now. I just found it tonight how oh so fitting!! https://m.youtube.com/watch?feature=youtu.be&v=pmPNUvQmexo

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