{Crohn's Awareness} :: Struggling in Remission

The first week of December is Crohn's & Colitis Awareness Week. They have done various campaigns in the past, but this year they focused on an "It Takes Guts!" Award, highlighting inspirational stories of varying IBD warriors and their caregivers. While it absolutely takes guts to live with these diseases, awarding a t-shirt and a social media shout-out for our daily reality just seemed a bit strange to me. Maybe I'm just being cynical. 

But it probably highlights how I have been feeling over these past few months. I was able to claim remission back in May, which is a HUGE blessing. It came after a long 3.5 year battle. And yet, I have had a hard time identifying why I haven't felt settled in my remission. A hard time identifying why I still feel so frustrated, despite being in remission. I have certainly been thankful for it: my symptoms have reduced, and I have felt so much better than I did the previous 3 years. But I have still really struggled, and I haven't really been able to pinpoint why. 

Remission is Not the Same

Part of it is that I haven't gone back to feeling the way I did in my first remission. While I feel better, I still don't feel my best. And that's a little hard to explain to people. Yes, my symptoms are better, but they're not 100% better. My GI tract is just not the same as it was before I got sick, and I feel as though it will always be off in some ways. In addition, I have still been dealing with side effects from my medicine. When I took Humira, the side effects eventually went away. That hasn't been the case with Stelara. It seems like they're here to stay. And it has been a long, slow process of figuring out how to deal with those symptoms. Out of desperation, I'm chasing medication side effects with more medication, and it's just not a fun place to be. Especially when the secondary medication can only provide some relief, not actual elimination.

On a positive note, I am seeing much improvement on the migraine medication. I went 15 days without a migraine, and I literally cried happy tears as I went to lie down in a dark room when I got that first one after so many days. Because that was the longest I had gone without a headache in OVER a year. That length of time hasn't repeated yet, especially with all the pressure shifts in the weather, but it gives me hope that it is possible to go 2 weeks again without a headache!

Another Flare, But Normal Labs

In addition, I have had 2 flares in the 6 short months I have been in remission. Which I never had when I was in remission on Humira. I would have bad "flare days" on Humira here and there, but nothing like this. My first one was in September, and it lasted more than 2 weeks, and felt like I was right back in the thick of active disease. It eventually settled, but then a month later, it started again and lasted about 1.5 weeks.

When I met with my doctor in November, I mentioned it to him, so he immediately ran lab work. Which I appreciate so much. Turns out that my labs were completely normal; my inflammation markers were the lowest they have been since my last remission and 100% confirm my current remission {lowest recorded in Virginia!} Which is a huge praise! So we're chalking my flares up to flukes, possibly stress-related, and monitoring my symptoms moving forward. I am personally taking my flares as a gentle wake-up call from the Lord on my schedule and confirmation on my need to pull back so that I don't over-stress my body and push its limits. Message received, loud and clear :)

Processing This Remission

I don't want to seem ungrateful; the Lord has been incredibly gracious and kind to me. I am in remission! I am not sick like I was a year or 2 years ago. And I remind myself of that often. I have to. But there is a reality to living with Crohn's, that even being in remission is not simple or easy. And that is something I am learning this time around. Because my first remission was. I achieved remission on the first biologic I tried, fairly quickly, and stayed in remission for 7 years. For the most part, I felt good, going back to feeling more like myself. I did have to adjust my life, but I found a new normal that felt fairly similar to my life before Crohn's.

This remission is just so different. One biologic failed me before I found one that put me in remission, and it took 3.5 years to achieve it. I have already had 2 flares in the first 6 months of this remission. And I haven't really felt good yet. Better than when I was sick, but not really good, like myself. The side effects are almost as bad as my Crohn's symptoms, that I often question which are worse, and if remission is worth the side effects. I am having to readjust my life again, but I am finding that my new normal is looking much different than it did before. And I am struggling to process through that.

But I have to remind myself that I am only 6 months in, that maybe another 6 months and things will be different. It took a long time to get to remission on Stelara, maybe it will take a long time to actually feel better, or more like myself, on Stelara. Even though my Crohn’s is in remission, I’m sure my body is still healing from being sick for so long. Because Crohn’s affects so much more than your GI tract. And I have always had to remind myself that my health is not guaranteed. I smile to think of the words of my former boss "Every day you're not in the hospital is a good day!" And that's SO true. I am beyond blessed to have not had any hospital stays. That alone is practically unheard of for Crohn's patients.

The Lord is good regardless of my remission status. I have seen His faithfulness over and over. So while it can be a struggle sometimes, I will praise the One who cares for my every need and never leaves my side. I will praise Him for access to medical care and medicine, for an attentive doctor. I will praise Him for {even imperfect} insurance and a generous employer. I will praise Him for a supportive husband and the ability to work from home. I will praise Him for every day I am not in the hospital, for every good day I have. I am currently working on praising Him, even for the bad days, because I know that He is with me, and that I don't have to walk them alone.

Advent 2023

For Advent this year, we are doing our Advent Blocks again, but we are also adding in the countdown wreath that we used at Easter from The Keeping Company. We set it up to countdown to Christmas, and we will be using Advent candles and their Advent devotional. I plan to light the Sunday Advent candles, but use battery-operated candles during the week. I figured that was safer ;)

For me, I signed up for a daily Advent email series from Every Woman a Theologian: The Right Prevail. It's supposed to be a more theological Advent series, so I'll be curious to see what it will be like :)

I am looking forward to entering into this Advent season. I had high hopes of having all of my Christmas shopping/wrapping/shipping-prep done by December so that I could enter into the season free of that stress and distraction...while I didn't quite meet that goal, I am close. And I will still be able to wrap things up earlier than usual and focus on the beauty and wonder and peace of the season. At least that's what I'm fighting for this year ;)

{iPhone Rewind} :: November

Oh my goodness...the PAPER. Does anyone else have this problem? We have massive amounts of paper that we clean out weekly. But it keeps multiplying. It's unreal. And ridiculous. And we're drowning in it. #sendhelp

First bonfire with Daddy's new Solo Stove!

Sometimes you have to do Spelling in your Princess outfit :)

Sweet brothers

Eli finally lost his front tooth! This thing has been loose for 2 months!

Pretty fall flowers from Mike

Read-Aloud time with Daddy :)

My attempt at a Thanksgiving-themed appetizer haha #nailedit

After months of wiggly teeth...Eli finally lost BOTH of his 2 front teeth!

Just chilling in the leaves

Enjoying a good robot book next to the fire

Superheroes and ponies :)

We have found some pretty BIG leaves!

The day after Thanksgiving means only one thing...

It's the end of November, and we have a raspberry crop in our backyard!

We celebrated Mike's birthday with some chips and salsa!

Eli is so patient...he helps his siblings work through their math workbooks when he finishes his work.

Thanks for the new book, Ms. Vi!

Using up all those turkey leftovers! ;)

Working hard on that handwriting :)

We made some paper bead necklaces for history while we were studying ancient Africa :)

Setting sail on their ship! #imagination

Learning about birds of prey and showing Daddy how we do science!

Thanksgiving 2023

This year for Thanksgiving, we decided to make it our "practice" year for a Thanksgiving meal. I made my first official meal a couple of years ago, but I made the turkey in the crockpot because I was too nervous to try it in the oven. And it was fine. But I decided to give it a go, for real this year ;)

I was gifted a turkey, and it ended up being 19-pounds haha. What better way to "practice" than on the largest bird available? Go big, or go home, right? Since it was so large, we knew we would have more than enough to share, so we put out an invitation to several people in our church. Many already had plans, but we ended up having a sweet woman from our congregation join us, and it was such a blessing to have her. 

This year, I started with The Pioneer Woman's recipes: brine and roast turkey. And while it was a decent amount of prep work, it actually turned out pretty good! I definitely learned a lot along the way, but overall, it was doable for a non-cook like me ;)

First thing I learned: I don't have a big enough pot. I had to do my brine in 2 batches because my pot wasn't big enough for the amount of brine necessary for a 19-pound turkey. Go figure. I don't plan to cook a 19-pound turkey again in the future, but if I do...I'm gonna need a bigger pot.

I also had my little helpers in the kitchen with me. Maybe if I can teach them alongside me, they'll learn early and take pity on their poor mother and be the ones to cook the turkey when they're grown haha. 

While we waited for the brine to cool, we finished up some schoolwork and then pulled out a fun Thanksgiving activity map {thank you, Dollar Tree!}.

Necessity is the mother of invention. Where there is a will, there is a way...I was smart enough to get the brining bag, but not smart enough to think through where the brining bag was going to go with the turkey and all the liquid in it. And since my pot certainly wasn't big enough...let's just say, my kids were not too sure about my idea, because I definitely roped them into helping me hold the bag while I stuffed the turkey inside. But Mommy got 3 loud cheers when I accomplished my goal AND lifted it into the fridge, so... 

Mike was busy making his family's recipes for rolls and dressing. The kids were more than happy to help with that too, and they turned out great! Made with love :)

In the end, everything turned out great, we had a lovely Thanksgiving meal with wonderful company, and it was a great day of giving thanks for all the Lord has done. I'm thankful for sweet family traditions to pass down and start with our kiddos, and I am thankful for how the Lord is so faithful to take care of us all year long. Praise God from whom all blessings flow! :)

Happy Thanksgiving!

Fall Days

It's hard to believe that we have already been in the house for almost a year! But here we are, another fall season has rolled around, which means another leaf-raking season has come :)

We have a magnificent oak tree in our front yard {and several other trees in our backyard and surrounding our property}. It's actually one of the historic trees in the neighborhood, as it was one of the original ones from before the neighborhood was built. It's massive and absolutely beautiful. 

Earlier this year, it secreted a sticky substance that coated our cars and driveway, that we later learned was the excretion of aphids chewing on the leaves {gross}. But it eventually stopped and thankfully is as healthy as ever. Then starting in early September, it starting throwing acorns at us haha. We had a mass amount of acorns littering our yard, and we had to be careful walking under it, because otherwise we would get pelted. And then all the leaves began to change colors, which is such a sight to behold, and makes me wonder how I ever lived without real seasons before. 

But then the leaves fall. And fall, and fall, and fall. And we basically rake leaves endlessly for weeks haha. So it is an all-family affair! Thankfully, we have had some good advice on all the right tools to help make the job a little easier, and it really has become a fun family event. It's still hard work, but we try to make it as fun as possible, and when you have hulk hands to pick up the leaves, and you get to jump in the leaf pile every now and then, it's not so bad ;)

Maddie Grace has become our expert helper! She gets right in there, holds the lawn bag, is ready to get more supplies when we need it, and even uses her strong muscles to carry the leaf bag! She's such a fantastic helper :)

And sometimes Daddy rewards the kiddos with a fun fire pit after an afternoon of hard work. I love these fall days and the memories that we are making as a family. Growing up, I remember Saturdays when my dad would mow the lawn, and we would have tuna fish sandwiches for lunch, without fail. I'm sure I complained about having to "do yard work, again?!?!" haha. But I don't look back on those memories with frustration, but rather with sweetness, knowing that I was with my family, and there was consistency in spending time together. I wonder what my kids will remember from these fall clean up days...because there's definitely a lot of them. We raked twice this past weekend. And then it rained, and the ground was covered again haha.