Crohn's Chronicles :: Here We Go Again

My Crohn's is back. I mean, it never actually left, but my symptoms are back, and my disease is active again. Sigh.

I was blessed with remission from my Crohn's for a long time {almost 7 years}, probably longer than most people experience. The Lord allowed me to be pretty healthy, long enough so I could have my babies, and that alone is something for which to be incredibly grateful.

I started seeing a return of my symptoms about 6 or 7 months ago. At first, I ignored them, brushed them off as something else. Thankfully, the symptoms have not been severe, but they are undeniable. When you go several years without any symptoms, and then all of sudden start to see them again... that's kind of a scary thing. So when they kept occurring, I knew I couldn't ignore it anymore. I started tracking everything and went to see my GI again. 

First step was routine bloodwork. That came back showing an iron deficiency {which may explain all of my headaches!}. It also showed that my C-reactive protein {CRP} was elevated, which is an inflammation marker. That just means I have increased inflammation somewhere in my body, so that alone doesn't point to a specific Crohn's flare, but it helps put all of the puzzle pieces together in the diagnostic process. 

The next step was another colonoscopy. Not fun, but part of the process. I used Suprep again {better than GoLytely, in my opinion}, but this time didn't seem quite as simple. I did fine with my clear liquid diet, then started my prep. First dose wasn't too bad, but the second dose was really hard to get down. Maybe one day they'll make something that tastes better. Or is 100% tasteless.

All cleaned out and ready for my {third} colonoscopy

My last colonoscopy was when Eli and Maddie were 10 months old, almost 3 years ago, and it showed zero evidence of disease. At that time, my GI had said that if had been my first one, he would never have suspected Crohn's at all. Fast forward to now, and he found that my ileum {lowest part of small intestines} is ulcerated again. And he also found evidence of disease in my colon, which is new. So my original diagnosis was Crohn's Ileitis, but now it would be classified as Crohn's Ileocolitis. So not only is my disease active, it has spread. {Why not go big, right?} They gave me photos from my colonoscopy, and I cried when I saw them. 

So what now?

The immediate concern is to reduce the inflammation and heal my intestines. So I will be taking steroids for the next month to address that. I will eat a low residue diet to give my insides the best chance at healing. And I will go back to see my doctor in a couple of weeks to discuss a new treatment plan.

Most likely, my Humira isn't working for me anymore, so I am looking at a change in medication. It's actually not uncommon, as most patients see about a 5-year effective life. I got almost 7 years, so it really was a good medication for me, while it lasted. We will confirm its effectiveness {or lack thereof} with the Prometheus diagnostic test {basically a test to show if I have built up any antibodies to my medication}. This is something that wasn't available when I was first diagnosed, so I am interested to see what it says. 

Like I mentioned before, the Lord allowed me to have a good level of health for a long time. And I am so grateful for that. I have always tried not to take my health for granted, as I knew that it could change at any time. But I have to admit that this is really hard right now. I really didn't want to be back here. It's overwhelming to think about "starting over" again. With getting my insides healed, finding the right treatment plan, dealing with insurance, not knowing what lies ahead, not knowing if I will achieve remission again, and if I am able to, for how long?

It seems harder this time too, because now I do have kids. It's harder to be sick when you have 3 little people who need you all day. With the return of my symptoms in the last few months, I have had to share more about "Mommy's Crohn's" with them. Because they want to know why Mommy is in the bathroom again. They want to know why Mommy doesn't feel good. Y'all, I don't want to be the "sick mom." :(

I know we'll figure it out. The Lord will sustain us, He will grant us wisdom on the next best steps. And I know that the Lord will use this in some way to teach my kiddos too, at least I pray that He will. Whether it be empathy and compassion, or simply patience while they camp out in the bathroom with Mommy...because I don't have to do that alone anymore :)

So here we go again. I am thankful for a good support system, and I am thankful I don't have to walk this alone. I pray that the Lord grants wisdom and healing, but more importantly, that He uses this to grow my heart closer to His. He is good, and I trust Him.

Social Distancing :: Day 102

Not much has changed on the COVID-front; we are just watching the numbers rise...

On a personal and fun note, I was able to meet my sister-in-law for a socially distanced dinner, and I can't tell you how much good it did my heart. We picked up curbside McAlister's and then backed our cars up bumper to bumper in a shaded parking lot, sitting in the back of our SUV's, enjoying our dinner. We literally sat for 5 hours, talking and catching up. Without kids. It was a little sad to realize how much I have missed outside adult human interaction haha. 

Birthdays

We celebrated a few birthdays in the last week or so! First up was Grumpz's birthday. We were able to drive by to wish him a happy birthday {he turned 70!}, and Aunt Lindsay made some fun mustache cookies for everyone to enjoy! :)

Uncle Michael was next. Unfortunately, we weren't able to see him, but that didn't stop our kiddos from sending as much as they could via video and snail mail! They really get into making cards these days, spending lots of time coloring and adding stickers.

The last birthday was Sasha's; my old lady turned 13!! I have had this pup since she was 6 weeks old, and I can hardly believe how much life we have lived together. She has been an amazing pup, and I am so thankful for how much she loves my kids. And it's pretty sweet how much they love her too :)

Father's Day

Yesterday, we got to celebrate our absolute favorite person! We had a fun, relaxing day, trying our best to shower our favorite guy with fun things. The kids were really excited about Daddy opening presents haha. We are so thankful for this amazing Daddy, and we love him so much!

Present #1: Every Moment Holy book

Present #2: a Man Crate filled with Sriracha goodies :)

It came in an actual crate with a crowbar to open it haha

Social Distancing :: Day 95

95. Days. Is. A. Long. Time.

We're in Phase 3 of reopening here in Texas, again, without meeting any of the previous phases' markers. We are starting to see spikes in COVID-19 cases from the original Phase 1 openings. The most concerning {at least to me}, is that there have been an increase in hospitalizations related to COVID-19. So we'll see how it all plays out...

Maddie Eye Surgery Recovery

We're almost 3 weeks post-surgery for Maddie, and praise God she is fully recovered! Her little eyes have healed really well, the redness is gone, and we have moved back to our normal routine. By far, the hardest part of recovery was the eye drops she had to have 3 times a day. We really struggled through that for 5 long days. But then we ran out {which was the all clear from the doctor}, and we celebrated BIG when we squeezed out those last drops haha. We had one happy little girl!

She doesn't have to wear her glasses anymore, which she actually missed for a few days. But she has since forgotten about them, and we will go back for a follow up in September. So for now, we have eye surgery behind us!

Picking Dandelions

When we go on walks in the neighborhood, we often walk up to City Hall, which is about a 0.5 mile walk from our house. There are a lot of dandelions out, and my kids LOVE picking them. They would pick every last one in the field if I let them haha! But I love the simple joy of picking a little yellow flower {weed}, and how they run to find the next one, showing each other where more are, squealing with delight over how much they love these pretty flowers :) 

Summer Days

The 95-100 degree weather has already arrived, so we are trying to find ways to stay cool in the crazy summer heat. We pulled out our water table and fire hydrant sprinkler from last summer, and we definitely have 3 happy kiddos!

Aiden is 100% a water baby; he LOVES playing in the water! He will stand in front of the sprinkler and just let it spray his face until we turn it off haha. I think he enjoys how it cools him off, since he is such a little heater, seemingly always hot. It's really hard to pull him away from the water!

This summer, we added a fun little splash pad to our arsenal of water toys, and it has been a big hit!

Front Porch Photos

Several photographers have offered Front Porch Photos as a unique way to mark a piece of history during the COVID-19 pandemic. I had reached out to a few local photographers offering these photos, but only heard back from one. Turns out, not only did we get to support a local photographer, but we got to support a young, budding one :)

She's a young high school girl, hustling to build her photography business, and I absolutely love that. She was so sweet to come out and shoot these photos, and they're sweet memories from this time. I will always jump at the chance to have some new family photos!

Of course, we still can't get all 3 kiddos to look AND smile at the camera at the same time, but they're still my little cutie pies!

Reflections on Privilege

priv · i · lege | priv(ə)lij

noun

a special right, advantage, or immunity granted or available only to a particular person or group

I have actually been thinking about privilege a lot lately. It's not lost on me that I have experienced a tremendous amount of privilege in my life. By virtue of the family I was born into, where and when and how I grew up, as well as the opportunities I have been given. It is all absolutely a privilege, and it is all absolutely grace from God. 

I feel like the Holy Spirit was whispering to my heart about it when the Pandemic started, and life as we had known it ground to a halt. Someone posted a quote that really got me thinking:

"We are in the same storm, but not in the same boat."

We are all facing the hardships of a global pandemic, and yet, we do not all have the same advantages {i.e. privileges} in the fight. I have the ability to make decisions for my family that will keep us pretty safe from this virus, all with fairly limited inconveniences. Is it hard to be stuck at home for months on end? Is it hard to have to take extra precautions because of my suppressed immune system? Of course. But can both me and my husband work from home with {for now} secure jobs? Do we still have access to the things we need, like shelter, groceries, and healthcare? Do we still have access to the things that we don't actually need but are really helpful during this time, like internet, and Amazon delivery? Yes. So I would say I have a pretty nice boat to ride out this storm.

As debates have erupted over the best next steps {when/how to reopen, masks or no masks, economy and public health safety}, I had to take a step back and realize that it's easy to have an opinion and support one particular method, when I can sit safely in my boat. I had to step back and realize that it's not as easy and simple for everyone to stay home. Not everyone can work from home. Not everyone still has a job. Not everyone's boat is in as good a shape as mine is right now.

And so, while I certainly have an opinion on what I think is the best course of action, I have to realize that I don't have all of the information, and I don't actually know what's best for every single person. So I can seek the Lord's wisdom and work with others to help find meaningful solutions. I can love and serve my neighbors, whose boats might be battered and/or non-existent right now. I can show grace and kindness to my neighbors who have differing opinions, knowing that we are all just trying our best to survive this mess. And I can rest in the knowledge that my God is the One who ultimately controls the storm.

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But there's another type of privilege that has been on my heart for a few years now. The national discourse over race relations has escalated so much in the past few years, or perhaps it's something of which I have become more aware. Either way, I have been trying to listen, learn, and seek understanding in the conversation. And I have so much more to learn, so many more ways to grow.

As I watch the news, my heart is breaking. For the senseless murder of an unarmed black man {George Floyd} by a white police officer. For the angry outcry of my black brothers and sisters who are trying so hard to get someone, ANYONE to listen. For the hurt and pain that runs deep within a community, a hurt and pain that I have not and probably will not ever experience. While I don't personally believe that violence and retaliation is the answer, I am trying really hard right now to understand it. And I know there are so many considerations...not all police officers are bad, not all of the protestors are violent, two wrongs don't make a right, etc. But I don't want to get lost in the weeds. I don't want to miss the real conversation and change that needs to happen in this country. The conversation that surrounds racism and how it has been allowed to continue in our society. How there are systems in place that grant me opportunities that are not granted to others, simply because of the differing colors of our skin.

I don't have all the answers. To be honest, I don't know if I have any answers. But I do know that sin is ugly. In all forms. I know that Satan loves nothing better than to divide and destroy and kill.  I know that we are all created in God's image, unique and valued and loved by a Creator who desires to be in an intimate relationship with us. I know that my God is good and kind and just. I know that my God grieves over the devaluing and loss of life. I know my God specializes in healing and redemption. I know that I have to set my privilege and preconceived ideas aside so I can actually listen and learn. And I know that I am called to love my neighbor, speak up for those who have no voice, and to seek God's glory in every word and action. 

So it's not enough for me to just recognize my privilege. I have to use it to serve and love those around me. Not only because it's the right thing to do, but because it is what the Lord requires of me. 

"He has told you, O man, what is good;

and what does the Lord require of you

but do justice, and to love kindness,

and to walk humbly with your God?"

- Micah 6:8