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You are here: Home / Personal thoughts / Pardon me for wanting normal

Pardon me for wanting normal

By Know-it-All Nikki Leave a Comment

I don’t want to do this. I really don’t.

On the 19th, I will be having surgery. I have to leave behind Peanut with my sister for about 48hrs because I will have to have a one night hospital stay. Lest I say again, I really don’t want to do this.

It’s necessary though. If I don’t have surgery, eventually my pacemaker will completely quit working (if it hasn’t already) and my heart will be left to fend for itself. Which will make me very tired. Very tired. I’m already tired, so imagine very tired with 4 kids at home, one of them, a baby. a breastfed baby. Say again with me… very tired. There is a side to this surgery that is not necessary and that is having 25 or so years of scar tissue removed from heart. The scar tissue is from all the surgeries I had done when I was younger. This has caused my heart to have to work extra hard to pump blood through all that scar tissue. Would it benefit me to have it done? Sure, I might feel even better than I did before. Problem is, the doctor doesn’t know if he can even do it until he gets a good look at my heart. So before I have surgery, I get the fantastic luxury of having a tube/camera shoved down my throat to get a real good look at my heart. Then they will decide. On that day, before the surgery. As of this point, I decided to have it done, if it can be done, (part of me wishes that it can’t) and it’s mostly because poor hubby has told me he wants his wife back. The one with more energy, who isn’t tired all the time. I tried explaining that no matter what, anyone who has pushed out 4 kids in 10 years is bound to be a little worn out, so get over it. The gal he married, is probably not coming back. He will have to make do with the model he has now.

I guess I am just ambivalent about the whole thing. I don’t want to leave my kids, I don’t want to be recouperating another 6 weeks, I don’t want to be in pain and limited to what I can do and can’t do (until I am healed), and I don’t want to be sliced open anymore.

I know, I should be thankful that through modern medicine I am even here today. Am I glad? Yes, but can’t I just be glad and then go on to be normal? Instead of a constant reminder of how un-normal I am? Every time I see a doctor, I have to explain all my scars and then my condition and then yes, I have 4 children and then No, no complications with my heart… by the time I get done with all that, I forget why I went to the doctor in the first place. My grandfather would be kicking me right now if he heard me talking this way. He was always the first to shout out my name whenever he saw me coming, he would sit and tell family, friends and even strangers about when I was born and how it’s a miracle that I am even here today. I should be more thankful I know but right now, my brain only focuses on the preparations at hand to get ready for this, the recovery and just how nice it would be to not have to do any of it.

But that’s not the plan God had in store for me. So I guess this is my self-absorbed blog for today. I’m sorry I couldn’t write anything better. I just want the 19th to be here and gone and to resume my regularly scheduled unnormal life as quickly as possible.

Filed Under: Personal thoughts Tagged With: Everything Else

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Hi there!

I’m Nikki and I’m thrilled to have you here. I’m powered by a good chai latte, loads of chocolate, and humor. Here at Know-it-all Nikki, I dish up honest conversations about life with adult congenital heart disease and mental health. I also share my love of books, knitting, midlife, and life after divorce. So, pull up a seat and grab a beverage. Let’s spill some tea, have a lot of laughs, and a few good cries. To learn more about what makes me tick, CLICK HERE

knowitallnikki

#writer 📲 #Binder #bookblogger #Knitter 🐑 💙 #chd #ACHD #TGA📧 hello@knowitallnikki.com 📸 ©️ @knowitallnikki


Ok, okay, I won't go anywhere. Promise.
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.
.
#c

Ok, okay, I won't go anywhere. Promise.
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.
.
.
#charliesworld #catstagram #instacats #catsofig #housecatlife


Technically, he's not ON my planner, thus preventi
Technically, he's not ON my planner, thus preventing me from filling it out, but he IS laying on the stickers I need to fill in the days and dates.
.
.
.
.
#charliesworld #instacats #catsofinstagram #catsofig #housecatlife catstagram


The world is falling apart.
The world is falling apart.


Head to the blog (link in bio) and read the latest
Head to the blog (link in bio) and read the latest. I've been trying to figure out how to write this for 2 months now and I still don't know if I got it right.
.
.
.
#knowitallnikkimovestoohio #dtga #heartmonth #ACHD #adultchdsurvivor


Well poop, I missed day 4 (Early Answers, Lasting
Well poop, I missed day 4 (Early Answers, Lasting Impact) and day 5 (How We Monitorthe Heart)! But it's fine! Because they both fit nicely for today's adventures which consisted of a carotid artery ultrasound (day 5) and a series of messages between myself and @nationwidekids to discuss how best to approach the weight loss struggle (day 4). 🤨😠

But it also ties in beautifully with day 6 of #heartmonth, #choosingjoy because despite all of the crap that goes along with being an adult with CHD, I am genuinely joyful. Some of comes out in sarcasm but I've told people if I'm not cracking jokes or inserting some token sarcasm into the day, then something is truly wrong. The last 2 years have been hard, but believe me when I say, I AM HAPPY and I'm wearing red today!
.
.
.
.
#ACHD #congenitalheartdefectsurvivor #WearRedforHeartMonth


I almost missed it, day 3 prompt for #heartmonth i
I almost missed it, day 3 prompt for #heartmonth is #lifebetweenappointments 

Yeesh, where do I start? Right now my life between appointments is a little chaotic. The number of appointments has increased a thousand fold than what I was used to growing up.  There are more appointments now than I had when I was pregnant with all four kids!

I struggle to keep them straight or where they're going to be. I write them down in a paper planner, my wall calendar, and my phone's calendar. And I still wind up looking them up multiple times because I don't trust my brain's ability to recall.

I'm expected to write down detailed symptoms. I don't recognize symptoms as symptoms. It just feels like a Tuesday to me. But do try to have a normal life, the docs encourage: eat right, be active, get sleep. How do I do that and not wonder if what I'm feeling while I'm trying to be normal is a symptom?
.
.
.
.
#heartfailure #congestiveheartfailure #congenitalheartdefect


Waiting.
.
.
.
#catsofinstagram #charliesworld #in

Waiting.
.
.
.
#catsofinstagram #charliesworld #instacats #catsofig #catstagram


Day 2 of #heartmonth is #motivationmonday. All I c
Day 2 of #heartmonth is #motivationmonday. All I can say, is sometimes motivation feels like the end of a very long tunnel; a pinprick of light in an otherwise black abyss. Motivation eludes me more than I care to admit. When it feels unattainable I feel like the little girl I used to be, opening my eyes in a pitch black room, are my eyes actually open? Making my way across the room, arms outstretched, hoping I don't run into anything, or worse, fall. 
And then other times, like on this Monday, motivation arrives and it feels easy, like a special occasion you'vebeen waiting for. So you wear the anatomical heart earrings your daughter bought you and you don the gifted knit heart cowl your knitty BFF made for you and for a day you feel normal.
.
.
.
.
#congenitalheartdefectsurvivor #congestiveheartfailure #dtga


Today kicks off the first day of #heartmonth. I st
Today kicks off the first day of #heartmonth. I still think it's silly to only give one day, one month, or even one week to talk about heart disease. Alas, here we are. 

I'm going to do my best to follow the 28 daily prompts for #heartdisease and #chdawareness but I make no promises.

Today's prompt is #BeyondtheDiagnosis. To me, looking beyond being born with a CHD means a few things:

It's the invisible things that can't be measured on a chart, like the fatigue, sadness for the health I wasn't born with, and the mental math of asking myself if I have enough energy for all I want to get accomplished in a week, or even a day.

It's being seen as a whole person; not the condition the doctors are treating. This a part of me, not all of me. I'm still a parent, friend, writer, a hopeless romantic. Yes, I'm a heart patient, I ALWAYS will be, but I'm also opinionated, stubborn, funny, and a person with real feelings. 

But most of all it's refusing to be reduced to number in the healthcare system, or someone else's discomfort.
.
.
.
#chdawareness



Follow on Instagram


knowitallnikki

#writer 📲 #Binder #bookblogger #Knitter 🐑 💙 #chd #ACHD #TGA📧 hello@knowitallnikki.com 📸 ©️ @knowitallnikki

Ok, okay, I won't go anywhere. Promise. . . . . #c Ok, okay, I won't go anywhere. Promise.
.
.
.
.
#charliesworld #catstagram #instacats #catsofig #housecatlife
Technically, he's not ON my planner, thus preventi Technically, he's not ON my planner, thus preventing me from filling it out, but he IS laying on the stickers I need to fill in the days and dates.
.
.
.
.
#charliesworld #instacats #catsofinstagram #catsofig #housecatlife catstagram
The world is falling apart. The world is falling apart.
Head to the blog (link in bio) and read the latest Head to the blog (link in bio) and read the latest. I've been trying to figure out how to write this for 2 months now and I still don't know if I got it right.
.
.
.
#knowitallnikkimovestoohio #dtga #heartmonth #ACHD #adultchdsurvivor
Well poop, I missed day 4 (Early Answers, Lasting Well poop, I missed day 4 (Early Answers, Lasting Impact) and day 5 (How We Monitorthe Heart)! But it's fine! Because they both fit nicely for today's adventures which consisted of a carotid artery ultrasound (day 5) and a series of messages between myself and @nationwidekids to discuss how best to approach the weight loss struggle (day 4). 🤨😠

But it also ties in beautifully with day 6 of #heartmonth, #choosingjoy because despite all of the crap that goes along with being an adult with CHD, I am genuinely joyful. Some of comes out in sarcasm but I've told people if I'm not cracking jokes or inserting some token sarcasm into the day, then something is truly wrong. The last 2 years have been hard, but believe me when I say, I AM HAPPY and I'm wearing red today!
.
.
.
.
#ACHD #congenitalheartdefectsurvivor #WearRedforHeartMonth
I almost missed it, day 3 prompt for #heartmonth i I almost missed it, day 3 prompt for #heartmonth is #lifebetweenappointments 

Yeesh, where do I start? Right now my life between appointments is a little chaotic. The number of appointments has increased a thousand fold than what I was used to growing up.  There are more appointments now than I had when I was pregnant with all four kids!

I struggle to keep them straight or where they're going to be. I write them down in a paper planner, my wall calendar, and my phone's calendar. And I still wind up looking them up multiple times because I don't trust my brain's ability to recall.

I'm expected to write down detailed symptoms. I don't recognize symptoms as symptoms. It just feels like a Tuesday to me. But do try to have a normal life, the docs encourage: eat right, be active, get sleep. How do I do that and not wonder if what I'm feeling while I'm trying to be normal is a symptom?
.
.
.
.
#heartfailure #congestiveheartfailure #congenitalheartdefect
Waiting. . . . #catsofinstagram #charliesworld #in Waiting.
.
.
.
#catsofinstagram #charliesworld #instacats #catsofig #catstagram
Day 2 of #heartmonth is #motivationmonday. All I c Day 2 of #heartmonth is #motivationmonday. All I can say, is sometimes motivation feels like the end of a very long tunnel; a pinprick of light in an otherwise black abyss. Motivation eludes me more than I care to admit. When it feels unattainable I feel like the little girl I used to be, opening my eyes in a pitch black room, are my eyes actually open? Making my way across the room, arms outstretched, hoping I don't run into anything, or worse, fall. 
And then other times, like on this Monday, motivation arrives and it feels easy, like a special occasion you'vebeen waiting for. So you wear the anatomical heart earrings your daughter bought you and you don the gifted knit heart cowl your knitty BFF made for you and for a day you feel normal.
.
.
.
.
#congenitalheartdefectsurvivor #congestiveheartfailure #dtga
Today kicks off the first day of #heartmonth. I st Today kicks off the first day of #heartmonth. I still think it's silly to only give one day, one month, or even one week to talk about heart disease. Alas, here we are. 

I'm going to do my best to follow the 28 daily prompts for #heartdisease and #chdawareness but I make no promises.

Today's prompt is #BeyondtheDiagnosis. To me, looking beyond being born with a CHD means a few things:

It's the invisible things that can't be measured on a chart, like the fatigue, sadness for the health I wasn't born with, and the mental math of asking myself if I have enough energy for all I want to get accomplished in a week, or even a day.

It's being seen as a whole person; not the condition the doctors are treating. This a part of me, not all of me. I'm still a parent, friend, writer, a hopeless romantic. Yes, I'm a heart patient, I ALWAYS will be, but I'm also opinionated, stubborn, funny, and a person with real feelings. 

But most of all it's refusing to be reduced to number in the healthcare system, or someone else's discomfort.
.
.
.
#chdawareness
Follow on Instagram

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