Journal Entries
This is going to be my blog for today because I am still having complications due to my chronic illness. Unfortunately, leaving the house for long periods of time just isn’t possible right now. I’ve had to advocate for myself and make a decision one that wasn’t easy especially considering I’ve been with my GI doctor for about nine years.
After this recent hospitalization, and honestly after last year’s surgery that was not the best experience, I realized I never really shared what happened.
Basically, I was scheduled for an endoscopy. I have to get them every couple of years to check the damage to my pancreas. Over the last 12 years, I’ve had about four endoscopies total, including an endoscopic scope ultrasound. They don’t do them often, but they’re important. They can detect cancer early, identify Barrett’s esophagus, GERD, duct issues, and so much more related to the pancreas.
I wasn’t nervous at all. Endoscopies scopes are not typically painful just a mild sore throat afterward.
But when I was rolled into the procedure room, my doctor said, “We’re here to stretch your esophagus.”
I immediately said, “No. I’m not here for that.”
He looked at the chart and corrected himself.
For a moment, I thought what if I hadn’t said something? Esophageal dilation is a very painful procedure and not something I would ever agree to unless absolutely necessary. Plus not needed for me, That moment alone was unsettling.
They had me lie on my left side with a triangular pillow behind me. They placed the mouth guard in. I remember being put under anesthesia and then the next thing I remember was people screaming my name and doing sternum rubs trying to wake me up.
I couldn’t wake up from the anesthesia.
The anesthesiologist later claimed I was so anxiety ridden that they had to give me extra medication. That was not truthful.
That experience halted me from wanting procedures done there again. On top of that, my original doctor no longer sees patients. The new doctors and nurse practitioners don’t know me, can’t get my records right, and I’ve experienced repeated chart errors.
Recently, after seeing my primary care doctor, I was told I needed to speak with my GI. I called them and explained I was having complications and needed to be seen ASAP. They told me the end of March.
Then a week later, they called to say I was on medications prescribed by the ER medications I was never prescribed.
Again, chart errors.
Again, people not doing their jobs properly.
It’s scary.
So I made the decision: I need a new GI doctor.
I see my primary in about a week and a half. Until then, I’m managing complications that make it difficult to leave my home for long periods of time.
The Reality of Chronic Illness
I had to cancel my in-person Bible study at church. That was hard.
I am very tired. Very down. Exhausted.
With chronic illness comes malnutrition and deficiencies. There aren’t enough specialists in this area, and that’s a real problem.
I’m part of online groups for people with pancreatitis. When you have a chronic illness, people don’t understand. You can put makeup on, do your hair, get dressed and no one would ever know you’re sick.
There are no visible scars. No obvious marks.
You “look fine.”
I pray for everyone with chronic illness. None is worse than another. They’re all hard. They’re all different. They’re all exhausting in their own ways.
Right now, I don’t have answers. I’m not scheduling new procedures. I physically can’t be gone for long periods. So I’m focusing on what I can do continuing my Bible studies and finishing the Book of Proverbs study, which has been incredible.
But I had to accept that I can't always sit in church for two hours right now. I have to give myself grace.
Every person I speak to at church knows what I’m going through. They offer rides. They pray. They show kindness. And I am deeply grateful.
But chronic illness is lonely.
And maybe this is a season where God is drawing me closer to Him in the quiet.
There are moments in my day where I am very emotional. I know some of that is healing. Some of it is grief. Some of it is counseling work. Some of it is just being human and feeling defeated.
How do I work?
How do I show up?
I’ve filled out over 70 jobs and heard nothing or received denials. I’m looking for anything remote receptionist work, sales, social media anything I have experience in.
The job market is saturated. The economy is high. Living on a fixed income while supporting others is heavy.
I love my daughter. She’s in college and trying to find work 100's of applications on top of college and taking care of her daughter. I help support her and my granddaughter. I do it because I love them. I always will.
It weighs on me. It pressures me. I’ve given it to God, but it’s still real.
A Word About My Daughter
I want to be very clear about something.
My daughter is an amazing mother.
She is supportive, caring, protective, confident, and incredibly positive. She doesn’t need outside approval to feel secure in who she is. She has high self-esteem, and because of that, she’s able to express herself in ways that many people cannot.
She is unique. She is strong in who she is.
And that confidence flows into how she parents.
She allows her daughter to express herself freely whether that’s hair, clothing, hobbies, personality, or emotions. There is no judgment in our home about self expression. There is no shaming for individuality. There is no pressure to conform.
But what makes it even more powerful is that she models it.
She expresses herself openly. She communicates. She talks through her feelings. She shows her daughter that being expressive, being communicative, and being emotionally honest is not weakness it’s strength.
We have a very family dynamic over here.
It is a safe place.
It is a place where you can say how you feel without being shut down.
It is a place where you can dress how you want age appropriate of course
It is a place where you can color your hair how you want.
It is a place where you can discover who you are without fear.
Your 20s are for discovering who you are. Even though the brain doesn’t fully develop until after 25, growth continues into your 30s and beyond. You’re still asking:
Who am I?
What do I like?
What feels authentic to me?
This world tries to conform everyone into looking the same, acting the same, following trends, and seeking validation. That is unhealthy. Individuality matters. Being your own person matters. Confidence that doesn’t depend on likes, comments, or approval matters.
I love unique people. I love people who are comfortable evolving. I love people who don’t need to tear others down to feel secure. Because when you are confident within yourself, you don’t need to compete with anyone else.
And that is the environment we choose to create in our home. Its a amazing home and one I am very proud of and that is why I wanted to post about her tonight as well. I have a amazing daughter that I am so proud of because its a hard world out there and she has not aloud any of it to effect her in anyway but, to be better then that negative evil stuff and that is a amazing and I love her with my whole heart and cheer her on to always be her and do her. She is doing life the right way with college and great career for her and her daughter its amazing and I'm so proud. This part of my post is for just the amazing I see day in and day out of how great a mom and person she is. Plus being supper strict on getting married before anymore children!!! . Amen to that!
In my days you play you pay now its to scary and to much commitment to get married but, having children isn't its all mixed up to be honest, I can't tell you how many people I know like this now a days with multiple dads and is a mess. Marriage is hard and work and worth it with the right person who's healthy. Having children is a amazing gift but, Lets change the norm now of just having kids with a live in person.
I am proud my daughter learned this way back 7 yrs ago and won't settle for less its a proud mom moment anyone can have a child its doing what is right for the whole situation. Again another thing I see on social media as a cool thing to do, Children test a relationship in many ways and I see so many be like, I just want to have his baby, or it will make us better, its cool, I just want a baby. Children are a huge responsivity and marriage should be the first thing before having them. I am old school and I see to many children back in forth and not just my grand daughter. Its sad. I pray that these things get better in this generation all you can is pray for the people and friends and families that things work out for the best. You should always want the best for all and I truly do.
I hope everyone has a amazing Wednesday night
Hugs