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.
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