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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