Sunday, April 26, 2020

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 




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