October 20, 2022

Summer of Sepsis, part 1

 I am stuck in a pain cycle right now and it is KILLER. My meds aren't touching it and I've tried some alternative meds and nothing. It sucks because I can't eat, I can't sleep, I can't work. I mean, I'm sort of doing those things, but not very successfully. It's absolutely maddening. 

So of course I'm going to hop onto ye olde' blog and complain. OF COURSE I AM. 

In other news, I guess it's as good a time as any to talk about my Summer of Sepsis. Yes, that is what I'm calling it for the rest of my life, because it was a BIG HUGE DEAL and is still affecting my health. I have permanent damage to my lungs, spleen, liver, and kidneys. It's also why I'm currently stuck in a pain cycle. LIFE IS SO SUPER DUPER FUN. On to the story... 


On June 15th, I was scheduled for a surgical repair of my guts. There was about an inch of my esophagus that needed to be removed, where it meets the stomach, due to prolonged damage from a number of factors. I also had some growths in my intestines that needed to be removed. 

The surgery is very safe, though intense, and required quite a bit of pre-op preparations which were followed to the letter. 

However, we are talking about ME, and my tendency to be medically *ExTrA* did not disappoint. 

The first thing the surgeons noticed was an overabundance of scarring which was essentially locking my organs in place. My liver, spleen, and left lung were the most damaged. 

It was also noted that a previous surgery was done in a manner not commonly practiced anymore. Again, not wrong, but not ideal. 

My surgeons cleaned up as much damage as possible, made some corrections, then continued with their original mission. The surgery was successful and I went to recovery, where I stayed an extra night due to the complications. I was discharged, with oxygen orders, after an uneventful 48 hours. 

At home, on Saturday the 18th, I started feeling unwell. I figured it was due to the typical after-surgery care... when the "good drugs" are officially out of your system and you are adjusting to the discomfort of the healing process. 

I was ALSO being monitored remotely via medical devices and apps, which I will say right now were a godsend and literally saved my life. The app started to ping my surgeon because my pulse rate and blood pressure were wildly varied. Then I started having difficulty breathing, despite being on oxygen.

Saturday was bad, but Sunday was worse. 

I read through all my patient materials again and again. I figured I was having gas pains. Or maybe I was drinking my water too quickly and swallowing too much air. Maybe I wasn't drinking enough and was dehydrated. I was doing my best to troubleshoot the situation. Then my left shoulder exploded. 

 A sharp, sudden pain burst behind my left breast and traveled down my side and across my belly. I screamed in pain and fell to my knees. I started to cry and it took Troy, Blayne, and Taylor to get me into bed. I took as many pain meds as I could and started eating Gas-X chewables like they were candy. 

The shoulder explosion began to repeat on loop and Sunday night was spent in agony. 

On Monday morning, I called the surgeon to request more pain meds. The nurse I spoke with was kind, but firm, that no more prescription pain meds would be called in. (tangent 1: You see, in a NORMAL world, I 100% agree with the nurse. But in a CAROLINE world, where a person has an extremely high pain and drug tolerance, I do not agree with the nurse.) I tried to convey my issues, but it is hard to talk when you are in pain, on drugs, and exhausted. The phone call ended and I lay in my bed wondering if a trip to the ER would be dramatic or not.  (tangent 2: when you have a decades-long history of being written off by doctors as "dramatic" you will for the rest of your life wonder if you are actually feeling what you are feeling.)

As I was lying in bed, feeling like death, a phone call came in. It was another nurse from the surgeon's office. She had pulled my monitors and based on the information, they wanted me to head to the Emergency Room since I was having trouble breathing. 

Permission was all I needed. 

However, I was at home with Taylor and Blayne, my two non-driver people and there was no way I could drive myself because I was on oxygen and could barely stand upright with the help of my walker and a person. So I called Daniel and Thaddeus, who were both working at McDonald's, and said "I need one of you to drive me to the ER. Right. Now." There was a bit of a kerfuffle in the background, but soon enough, Daniel was back at the house and helped me get into the car. 

He raced me to the ER, and dropped me and Taylor off, before heading back to work. I hobbled into the emergency room, bent over in pain, and told them I had had surgery at this location, five days ago, and I can't breathe and my doctor said to come in. 

I must have looked terrible because I was immediately taken back to a room for further examination. Things started to get a little hazy here because I was placed on a morphine drip. Labs were drawn and I had a CT scan. I must have dozed off a bit, because I remember being woken by a nurse who was telling me they were going to take me back for surgery NOW. 

And I said to him, "I'm so happy there's something wrong." 

And he said, "Yes, there is something very, very wrong. You should have come in sooner."

And that is the last thing I remember. Lying in a bed, telling a guy I was happy there was something wrong with me, with Taylor sitting in a chair in the corner of the room, wide-eyed and scared. 

October 4, 2022

Elder Thaddeus Bingham

June 8, 2022 

  • Thaddeus is called to serve in the Oklahoma, Oklahoma City mission, English-speaking. 

June/July/August 2022
  • Mission preparations are in full force. Suit fittings. Temple clothes. Luggage. Plus a million other things that you need to do to prepare someone to leave for two years. 

August 21, 2022 

  • Thaddeus is ordained an Elder and receives the Melchezidek priesthood. 

August 28, 2022 

  • Thaddeus has his missionary farewell in Layton, Utah. 
  • Thaddeus receives his temple recommend.
  • Open house to celebrate Thaddeus and wish him luck on his mission

August 30, 2022

  • Thaddeus receives his endowment in the Bountiful, Utah temple. His Ellsworth grandparents were able to come to Utah and go through the temple with him. 

September 4, 2022
  • Thaddeus is in an ATV accident. Has hairline fracture to the clavicle and cracked ribs, A.C. joint separation, and pulmonary contusion. Has to wear a sling and is ordered to take it easy.

September 11, 2022
  • Thaddeus is set apart as a Missionary

September 12, 2022
  • Due to coronavirus protocols, the Missionary Training Center experience begins at home

September 21, 2022
  • Thaddeus enters the Provo, Utah MTC. 

October 4, 2022
  • Thaddeus is officially in Oklahoma. 

April 16, 2022

March-ish to April-ish 2022

 My face is back to normal now. Hooray. (She's says with lackluster.) At any rate, my brain is doing just fine. I just had my yearly MRI and the results are stable. What does that mean? Not a whole hell of a lot. The reason I have to have my brain looked at is that the disease progression of MS can be spotted on an MRI of the brain BEFORE it's noticed physically. But disease progression in other parts of the body that are controlled by the nerves in the spinal cord is usually noticed physically before you can see the progression on the spinal MRI. Are you confused yet? At any rate, I am STABLE and my brain more or less has the same amount of damage as last year. That being said, there is definite, noticeable brain atrophy, which gives more weight to the fact that I am losing my words more, and more often. 


The disease progression has gotten to the point where I will need another surgery. They need to remove some of my esophagus and intestines, plus it's time to remove some old scar tissue courtesy of my handy dandy connective tissue disease. It will be awesome to not feel like I'm being squeezed all the time and I'm ESPECIALLY looking forward to less vomiting. 

THEN, when THAT is done and over, I will be getting two more dental implants and another bone graft. I mean, can you even handle my glamorous life? I'm very excited about the whole teeth thing though because I've been waiting a long time. We had to get through 3 sets of braces and a wisdom tooth surgery before it was my turn. And our insurance resets on May 1 so there will be plenty of money for co-pays and such. 

In non-Caroline news, we are getting Thaddeus ready to send in his mission papers. He has been working really hard to get things in motion, including setting up his own doctor appointments. It's super helpful because work is crazy for both me and Troy. (And there I go making non-Caroline things into Caroline-centric things.) 

We are trying new meds for Blayne. We are switching to something a little stronger and hopefully a lot better at quieting some of the voices in our head. 

Daniel is doing great. He has his appointment set up on his birthday to get his drivers license. If you can keep a secret, I've been letting/making Daniel drive people places instead of me.  THAT'S WHAT YOU GET WHEN YOU GET A LICENSE.   

Taylor has been really getting into sewing and making clothes. She right this minute is making a gray bustier. She found a pattern she liked on Etsy, bought it, and immediately set to work. 

Which reminds me that I have to work in a few hours, so I need to get some sleep. Man alive, life really just gets crazier and crazier the older the kids get.