Hidden in Plain Sight

Do you remember when you were younger and you were learning a new game and you got a practice round so you could “get the hang of it” before keeping score? Wouldn’t it be nice to have a practice round for each new stage of life? Unfortunately, that’s not how life works. We can have a “do over”, of sorts. Each year, month, week and day is a fresh start.

I am going to hit the re-start button and have a fresh start for this blog. I have had an internal battle with myself as to whether I should continue to write. So, here I am . . . writing. It has been too long since I last put pen to paper or fingers to keyboard. I wasn’t sure I could still write or if I even wanted to write. Has that season passed? I hope not.

Can you relate? Have you ever wanted a re-do for a season of your life?

Life with a chronic illness is like that. Each new medicine and each new treatment comes with the promise of a fresh start – – – a more “normal” life.

I was recently in a clinical trial. (I will tell more about that in a future blog.) The clinical trial definitely came with the promise of a fresh start and a more “normal life”. Although there is no cure for Crohn’s, the new med has given me the most normal lifestyle I have had in a very long time. A daily shot – – – not something I ever thought I would be doing – – – gave me a new shot at life. My physical symptoms have improved. My energy still fluctuates but I’m able to do most of what I want to do. And, if I’m not able to do something, that’s OK. Tomorrow is another day.

Reflection: What do you need to set the re-set button on? A fresh start can come any time, not just January 1st.

*Author’s Note*

I enjoy writing these blogposts for http://www.hiddeninplainsights.com. I eagerly and enthusiastically set out on this blog journey, trying to write and publish one blog a week. When I couldn’t meet my self-imposed deadline, I was upset with myself and thought maybe I shouldn’t write. Gradually, I did stop writing. With the encouragement of several friends, I am putting pen to paper and fingers to keyboard, again. My new, realistic, writing plan is to publish the first week of each month. Ideally, I will publish the first Monday of the month. However, you will notice today is Tuesday. I’m not allowing the fact that I missed my goal, yesterday, keep me re-starting the blog, today. Let this be your reminder you can re-start any time. I plan to do my best to publish a blog at the beginning of each month. There will, occasionally, be a bonus blog. I want to share some insights into life with a chronic health condition with some personal anecdotes. I hope what I have learned in my almost 30 years of life with Crohn’s can help someone on their journey with whatever condition they are living with.

Thank you to everyone who takes the time to read what I write.

Are you one of those people who is always organized and everything is in it’s place and a place for everything? Or, are you running around like a crazy person in the last few minutes before guests arrive, trying to give the impression that everything is always in place and you have your act together? Me? I’m both. I’m a recovering perfectionist, trying to be organized without stressing too much.

Life with a chronic illness has taught me that no matter how much I like to plan my day, my body will make other plans. Having my ducks in a row is more of an outline for my day/week/month/life. Life certainly goes smoother when your ducks are in a row. But, sometimes that row of ducks is gonna be crooked.

What does my crooked line look like – – – setting my alarm early, hoping to check a couple of items off my list. But, I wake up exhausted with a headache and a little nausea. It’s ok, I think, because it’s early. I can still get something done. I have to eat so I can take my medicine. I start cleaning and have to stop and rest. My ducks are getting off course.

I have house projects on my to – do list. The big projects are on hold, for now. The days that I have lots of energy have become filled with every day life chores. The biggest project on hold is the last of our moving boxes – – – these are mostly boxes for the home office. I need to corral by ducks and tackle the last of the boxes before the holidays.

If I get my ducks lined up and get to the end of the boxes, will the ducks stay in a row? What will come next? We have very few routine days in our lives. What can we do to keep our ducks in a row? Have a plan. Have a backup plan. Don’t lose hope when the plan gets derailed.

Reflection: Life is full of plans – – – We make plans and change plans. Ultimately, God makes the plans for our life. We have an outline. All we can do is try to follow the outline and . . . keep our ducks in a row.

* Just as you would not judge a book by its cover, don’t jump to conclusions about this blog post from the title. This article is in no way a commentary on masks as they relate to Covid.*

Masks, Something very few of us thought about before March 2020. We have since been told the value of a mask.

Let’s think about that for a minute. What is the real value of a mask? And, while we’re thinking about masks, let’s go beyond Covid. Masks were here before Covid. There are, of course, surgical masks. There are also Halloween masks. They can be fun. We can hide behind them and pretend to be someone else. And, there are also skincare facial masks. These masks are soothing and leave you with a youthful glow.

I want to talk about a different mask. We can wear a figurative mask to hide our emotions. Or, in the case of someone with a chronic illness, they may wear a “mask” to hide their pain.

We have all said we were “fine” when we were not. People with chronic illness and autoimmune disease are great actors. They hide behind their smiles and continue to be “fine”. They become experts at acting like they’re not sick.

My own experience has been to wear my “I’m fine” mask to conceal headaches, nausea, abdominal pain and more. I tend to mask my symptoms until I have to reveal I’m having a procedure or surgery. Thankfully, my symptoms are mostly under control, for now, with medication.

I will continue to mask my symptoms. And, if asked, I will tell you that “I’m fine”. I have become quite good at acting “fine”.

Reflection: What are you hiding? Or, what are those you meet hiding? Behind every “I’m fine” is a story we don’t know. Unmask the real you.

Here we go, again . . . I am a “frequent flyer” in G.I. Procedures at UNC Hospitals. My family and friends know I have a procedure, approximately every six weeks. I have decided to share some of the behind the scenes of procedure time. I jokingly refer to the procedure as getting a tune up or rotating my tires. Believe me, after almost 30 years with Crohn’s and IBD, you better have a sense of humor.

Crohn’s has many sub-illnesses. These “bonuses” can be worse than the initial Crohn’s. Through the years, I have had many of these side issues – – – fistulas and a stricture are the main culprits. The stricture is the reason for my many procedures.

An article in healthline.com describes an intestinal stricture as “a narrowing in the intestine that makes it difficult for food to pass through. Sometimes, it can lead to an intestinal blockage. At least one-third of people with Crohn’s will develop a stricture within the first 10 years of a diagnosis.” I did have an intestinal blockage in 2005, twelve years after my initial diagnosis. However, I was not plagued with chronic strictures until fairly recently.

I periodically go to UNC Hospitals for a stricture dilation. The procedure is quick. But, I am sedated. Dehydration and years and years of procedures means I’m a difficult I.V. stick. It usually takes two or three tries to get the I.V. started. Sometimes, I’m lucky and it works on the first try. You can see in the picture above that that was not the case on that day.

I usually tell the nurses, “It’s not you, it’s me.” The nurses and staff at UNC Hospitals are amazing! They do their best. But, the odds are against them when most of their patients are dehydrated AND are frequent procedure patients.

OK. Enough about getting a good I.V. stick.

Without going into too much description, a stricture dilation procedure is similar to a colonoscopy. Plus, while sedated, a dilator is used to stretch the stricture.

In addition to the stricture dilation, I give myself shots to help keep the stricture open. I recently changed the type of shots I use. My physician and I are hopeful that the combination of Stelera injections and stricture dilation, along with a steroid shot during the last procedure will lengthen the time between procedures.

Thankfully, Stelera seems to be working well, at this time. My last procedure was November 19th. It has been 10 weeks. And, I still have 4 weeks until my next scheduled procedure. I am incredibly grateful for research and new meds.

Reflection: Whatever life throws at us, big or small, always look for the positive and be grateful. And, the occasional tune up is good, too. Reflect, adjust and change your outlook, when needed.

Today is the first day of a new year. It represents new beginnings. Out with the old, in with the new. So much symbolism as we start a new year. Each year, as we flip the page on a new calendar (or scroll to January on our digital calendars), we all expect something magical to happen. A new year marks new beginnings. We make resolutions. Or, we set new goals. Or, maybe you have a word or a theme for the year.

Through the years, I have made resolutions. It didn’t take long for the newness to wear off and the resolution fizzled. The truth is there’s no real magic to the clock striking midnight on December 31st. We’re the same person today that we were yesterday. But, every day we should be a better version of ourselves than we were the day before.

Life with a chronic illness means you start a new year thinking —– “Is this the year that I make it all year without going to the hospital?” OR “Is this the year I have another surgery?” OR “Will I miss my daughter’s dance recital, this year?” These questions and many others have motivated me to switch from New Year’s resolutions to a word of the year. The word for 2021 was JOY. I tried to live with as much JOY as I could. I found joy with family and friends.

The year 2021 was a year without surgery. And, there were no overnight hospital stays. So, that’s always a good year. I did have seven outpatient procedures. I also switched from one biologic medicine to a new biologic med. Which means I changed from giving myself two injections (shots) every two weeks to now, giving myself one injection every eight weeks. Overall, 2021 was a great year for me, as far as my health is concerned. If I have a great health year that translates into a great year in all aspects of my life. Many years, I have missed holiday activities with my family because my Crohn’s was flaring up. This was the first year in many years that I was able to enjoy all the Christmas activities with family and friends. Christmas Eve was very special because I was not in the bathroom with a Chron’s flare.

Being present and in the moment should be important for all of us. It is very special for the chronically ill. You don’t realize how important it is to be in the moment until you miss those moments.

That brings me to my word for 2022. This year’s word is intention or intentionality, as being intentional with your time — how you spend it and who you spend it with.

I plan to make my time in 2022 count.

Reflection: When you look back on 2021, what do you see? Do you have a word for the new year? As a writer, I always like this analogy —– Today is the first page of a 365 page book. How will you write your story?

December 1st marks the beginning of Crohn’s and Colitis Awareness Week. December 1st is also my birthday. And, today marks one year since I wrote and published by first blog. I chose this date to publish my first blog for those reasons. I took it as a sign that my birthday falls on the first day of Crohn’s and Colitis Awareness Week. I wanted to start the blog to make others aware of this disease. I have published 22 blogs that are part educational, part devotional, and a little glimpse into my life and my journey with Crohn’s.

Thank you to everyone for following along on this journey. Every day is it’s own journey with it’s own challenges.

I have had a goal/dream to write a book for many years. I have a novel I have started writing. In the back of my mind was the gnawing feeling that I couldn’t write a fictional story until I wrote my own story. I decided the best way to tell my story was through a blog. I plan to continue telling my story while living a life hidden in plain sight.

Reflection: Live and celebrate your best life each and every day.

The picture above is what would later be my biggest scar. It’s also the largest outward symbol of the inner battle my body has taken on to keep me going. 2015 was the year I had many battles. That year, I had two major surgeries – each with about a week inpatient stay. I also had four outpatient surgeries and another week in the hospital for an infection around the drain tube in my leg.

Recently, I was reflecting on that year and other surgeries and hospital stays. The song, “Scars” by Christian group I Am They, started playing.

The song, of course, is about Jesus’ scars. Every time I hear it, I can’t help but think of my own scars. Multiple surgeries have left me with multiple scars.

These scars are an outward sign of the battle my body has been through. Every surgery creates a new scar. Some are visible and some are on the inside. Scar tissue builds up. That can create other issues.

Scars don’t have to be a bad thing. Every new scar, and, even the layers of scar tissue can make you stronger. I have learned that the battles our bodies fight make us stronger, make us who we are . . . who we’re meant to be.

A health diagnosis can change your life in an instant. And, you are left with scars . . . physical and mental. The physical scars are visible. People have an idea you have been through something. The invisible scars are no less traumatic.

Let your scars – visible and invisible – be a map of your journey. Scars can tell where you have been, while showing your inner strength.

I know I am thankful for my scars. I would not be who I am without my scars and the journey they have brought me through.

Reflection: Be thankful for your body, including all your scars. You can’t appreciate where you are without the entire journey.

There are so many ways to answer the question, “How do you define you?”.

We are all different. Each person will have a different answer to this question. And, each person will answer the question differently, depending on what season of life they’re living.

We determine what we allow to define us. You can be defined by your circumstances. Or, you can be defined by how you live through your circumstances.

What is the meaning of definition? The word definition is defines as a statement of the exact meaning of a word.

When you receive a chronic autoimmune disease diagnosis, you know your life will change. You may not know, at the time, but, you still hold the cards as to how your life will change.

When you get a chronic disease diagnosis, you have to redefine yourself. You even redefine what your “normal” is and what healthy means for you. My “normal” day would be a sick day for someone else. Perspective plays a big role in how you define you.

I decided early on that Crohn’s would not define me. I was once introduced as “the woman with Crohn’s”. That’s not me. Although I do have Crohn’s, it will not define me. I will live my life as if I’m not sick. No one will know I’m sick unless I tell them.

The definition of my name, Carolyn is Joy. And, that is what I hope will define me – – – the joy in my heart and the joy I can share with others and the joy my family gives me.

Reflection: Don’t let your circumstances define you. Who you really are is much bigger than your circumstances.