Category Archives: Infection

Life After Sepsis

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The Lord is MY helper, MY portion, MY everything. No matter how dark things have been in my life, the one thing, many times the only thing that gets me through it,is Jesus. I love that not only is my Savior, my Creator and the Omnipresent I AM, he is also my friend and loves when we talk and when we sit together in the stillness.

I find myself daily apologizing to my family and friends, but most of the time, my family for the bone-tired feelings I get. Some days I only want to rest, and do absolutely nothing else. These are the days where as soon as I sit or lay down, I’m out. Mid conversation some days. Insomnia is now part of my new normal and I do not like it at all. But, until I can figure how to beat it, I just have to live with it.

My thoughts are many people are of the opinion, you had sepsis. You survived. That’s great. Let’s move on. I wish it was that simple. Truly I do. But many days it is not. It is always at the forefront of my mind, what happens if I get it again. How will it affect me then? And for many of us that have lived to tell about having Sepsis, Septic Shock, Septicemia (the terms are interchangeable) it is a reality we face daily.

My maternal grandfather died of sepsis. At age 14 I knew it was some type of blood poisoning, but that was all I knew. After having survived it, I know that any infection that we have in our bodies, can get into our bloodstream and our system starts shutting down and going into organ failure as a response to the infection.  Sepsis is a life-threatening condition that arises when the body’s response to infection causes injury to its own tissues and organs. And it does not discriminate. Anyone can get it. For more detailed information about Sepsis, visit The Sepsis Alliance.

The day before this all happened. Before I was in a near-death state, nothing seemed out of the ordinary. I stayed up till 10p.m. turned in for the night and that’s when life hit some pretty big bumps, but I didn’t realize it then. I became cold, so cold that no amount of blankets was helping to warm me up. I shivered for several hours, determined that whatever was happening was just a really bad cold and it would be better by morning. I had chills like this in the past and lived. I was up and down to the bathroom several times, but that didn’t seem out of the norm for me, so I just kept hanging on. The next day waking up, I was still cold, but not freezing. I assumed I must have had a fever and it must have broke and that was the reason for no shivering chills. As I descended the stairs, I kept thinking I felt like “death”. I knew whatever kind of bug it was, it would eventually be okay.  How little did I know, I was closer to death than I would have ever imagined.

I recall the paramedics taking me to the cot and when they lifted my legs on the cot, the pain was unbearable. I screamed in response to the pain, having no idea why that hurt so bad. It seems cellulitis had appeared overnight and my leg was severely inflamed. I still had that elusive fever I thought I had shaken and my blood pressure was seriously low (60/40). The next five days were a blur. I can recall bits and snippets but full days are lost. I remember being moved from the step-down unit to regular room and the fear that I would lose my leg if they couldn’t get the infection under control.

I had lived through so many cellulitis infections that I had taken for granted how serious it could be and was. The pain after those first 5 days in the hospital was something I hope I never have to endure again. Therapists would come in the room and want me to try and stand/walk on it and I felt like a baby because I couldn’t. I wasn’t one of these people that whines when I am in pain, very often. I have lived with Fibromyalgia for over 10 years and I have learned to deal with pain every single day, but this pain was something I wouldn’t wish on my worst enemy. My total days in the hospital was only 14. I know two weeks seems like a lot, but not when you have Sepsis/Septic Shock. The miracle is you survived. What the doctors fail to tell you is that your life will never be the same again.

Here I am, Post Severe Sepsis 7 months and 6 days and while I am thankful for the Lord keeping me here and alive, I miss the old me. I NEVER had panic attacks or any type of anxiety that couldn’t be calmed by the Lord and His Word. My memory was rock solid. I slept. Insomnia and I had never met. Fatigue, I thought I knew what that was, that’s part of the fibromyalgia too, along with brain fog. In that sense, knowing what it was and living with it for the past 12 years prepared me. I didn’t have to wonder why, in mid-sentence or thought I would just forget. I simply have no idea what I am doing or why and most days I just have to let it go. Trying to remember makes it worse. It reminds me of what I have lost.

Losing my short term memory is like watching my grandmother and father in law grope their minds when they were dying with Alzheimer’s disease. I hate the feeling. I despise asking family members to remind me what they might have just told me 10 minutes ago because I need to write it down or put it in my calendar. And some days, mid-thought I can’t speak what I want because of the word being just out of my reach. It is so frustrating to me. Or worse yet, I start to tell someone something I already told them but have no memory of the conversation.

I am cold 99% of the time. This part of me hasn’t really changed that much as I have always been cold due to not having my thyroid anymore and relying on medication levels to keep everything in check.

I really need to get my hearing checked. I have always been known as a loud person. Unfortunately, since sepsis, I am super loud, but don’t realize it. My husband and children are always telling me to stop yelling. I have no idea I am. I can still hear everything ok, just not my voice. To me, my voice sounds perfectly normal. I cringe when I am out alone because I have no idea if I seem to be shouting or not. No one ever says.

The fear of getting sepsis again is pretty huge. I don’t talk about it much because dwelling on any one thing, is not healthy. And since my first bout when I was in Severe Septic Shock, I have already had another Septic infection. That landed me three days in the hospital. My big sign is shivering/chills that won’t go away. I wait a few hours and if not better, head to the ER because I know I need those IV antibiotics sooner than later.

I should have known to go to the emergency room that day when I awoke. I did not urinate all day long. That should have been a red flag that something was wrong. The fact that I didn’t want food or drink of any kind, at all, should have been a red flag, but I was so sick by morning, that I was confused and lethargic by that point. I’m very thankful my husband was home and knew something wasn’t right. Had I been home alone, I wouldn’t have lived to write this.

And I will keep writing about it and spreading awareness. Sepsis kills over 250,000 people in the United States alone every year, millions globally. sepsis org

God gives us one life to live. We must use our gifts and talents as a service to others. My prayer is that I will never have to say I survived Sepsis again for a third time.

I belong to a Post Sepsis support group and I am glad to know that the many concerns I have, how much I have changed, it’s all our new normal. If normal is such a thing. I miss the old me, but in having to take small steps to make it back, I have learned to appreciate life more and not take it for granted. And someday, I hope to make it through a whole day without a nap. That’s my goal for now.

May you know that Jesus is here for you, every single second of your day. When you need him, he’s always available. He loves you~so very much. Jesus can turn any test into a testimony and any mess into a message. #HopeAlwaysHaveFaith

Blessings to you ~ Carlene

 

 

 

 

Days Gone By

As I sit here, I just can’t believe that summertime is over and school is upon us. For some districts, their school has already started. Our summer break didn’t go exactly as planned, but we still managed to squeeze in a few days at the Columbus (Ohio) Zoo and Newport (Kentucky)Aquarium.  Tyson had a blast and that was our hope. A great way to end the summer before starting all-day kindergarten this year!

Tyson Berwin Park

Climbing down -because he never does things easy.

As I look back on the past several years and read some of my past blog posts, I am amazed at how far Tyson has come. When he entered preschool two years ago, at the age of 3 he had 24 words and some of them weren’t even true words, but sounds he made for something.  Now at the age of 5, he not only has unlimited words in his vocabulary but is speaking in multiple sentences at a time!!! We are so thankful to the many speech therapists that have worked with him and continue to work with him on articulating each syllable he speaks. He used the word “very” quite often but still says “berry”. And somewhere along the way, this child has come up with the phrase”not quite yet” when asked if he is ready to do something or finished with it.  It is quite comical because he is ever so serious when he says it.

He is very excited to be going to Kindergarten. He will be in a Special Education Resource Room for most of his learning time, but as he excels in areas or becomes proficient, he will have the opportunity to spend time with his neurotypical peers in another classroom, as well as going to gym, music, art, library, and lunch with them.

Four more days and he will be boarding his schoolbus and starting his adventure for the year.  To say that I am excited, would be an understatement.  I love him with my entire heart and then some, but I am ready for my own break from him.  He is so full of energy and inquisitiveness, this grandma is ready for some downtime.

A friend asked me if I thought he would do well in an all-day class and quite frankly, I think he will be amazing. He THRIVES in a structured environment.  The night of the school open house, it took a long time to get him out of his classroom. So many things to see and do. The hardest part of the whole day will be getting him up very early (for him) to get ready and eat before his bus comes.  I am sure he will be one of the children that will fall asleep on the ride home.

Over the summer, other changes have taken place. Our son moved back home, with a new puppy, that is not trained yet. He is a beautiful dog, but still very hyper and having one hyper “boy” in the house does not help the dog calm down. I keep praying a magical fence will appear around the yard and then both boy and dog could run until they were too tired to move.

Psalm 62:5-8 New Living Translation (NLT)
5 Let all that I am wait quietly before God,
for my hope is in him.
6 He alone is my rock and my salvation,
my fortress where I will not be shaken.
7 My victory and honor come from God alone.
He is my refuge, a rock where no enemy can reach me.
8 O my people, trust in him at all times.
Pour out your heart to him,
for God is our refuge.

As I recover from the medical problems I experienced in June, the Lord and I have been spending more time together and this is exactly what I needed. The waiting game has always been a hard thing for me. I am great at telling others that God is in control and everything in HIS timing, but I am not very good at following that advice for myself. I have never had this long of recovery time after having a cellulitis infection, ever. And then I remind myself, it just wasn’t the cellulitis. The lingering memory problems from the sepsis is one of the struggles I am having. I know memory problems come with age, and I totally get that, but the struggles I am having makes me feel like I have dementia some days. My husband can tell me something, and the moment I turn from him and walk away, I forget it. I then ask him about the same thing and he becomes agitated because he JUST told me about it. Now,  I am trying to repeat out loud everything he tells me in the hopes I will retain it in my memory.

Short term memory and cognitive problems are a known response to having

sepsis/septic shock in your body.  The fatigue isn’t anything new. I’ve lived and dealt with fatigue for over 10 years due to the fibro. I’m used to fatigue, it’s just that I used to be able to walk more with my cane and now everywhere I go, it’s my walker or wheelchair. I keep doing my home exercises and getting out as much as possible to build my strength. My therapists and home nurse, before discharge were happy for me and all the progress I am making, but being the person that doesn’t like being out of control, I am struggling to see the progress. Today, I woke early (8 a.m.) and haven’t taken one nap all day.  I guess I am making progress. I will be calling first of the week to have the hospital bed picked up, as now climbing our stairs is possible.

Life happens. It goes on. Even if we aren’t ready for it to go in the direction it heads. Jesus is at the helm in my life. Sometime’s as life happens, I am reminded that I truly do need to rely on HIM for everything. Sometime’s I need to slow down and take care of me.  In my mind, I know I can’t take care of others if my well is dry, but there are time’s things happen that remind me of this fact. My well is slowly filling up, and as it slowly fills back up so I have all the love I need to pour out on others, I will learn to be still and wait on the Lord.  I am forever grateful for the people the Lord places in my life to remind me that progress, no matter how imperfect, is still progress.

May you know how much Jesus Loves you~right now as you read this and always. Jesus can turn any mess in our lives into a message and any test we face into a testimony. #HopeAlwaysHaveFaith

Blessings~Carlene