Crohn's Chronicles :: 18 Months

My Crohn's has been active for 18 months. 

I have been sick for 18 months. And while it definitely involves a myriad of GI symptoms {which is the bulk of my symptoms; I'll spare you the details}, it has also included fatigue, migraines, joint pain, muscle weakness, dizziness/nausea, weight loss, skin irritation, vitamin deficiencies, hair loss, and sinus irritation/pain {I sound like the side effects warning on a drug commercial haha!} Because Crohn's is an autoimmune disease and involves inflammation in the body, it can affect so many different parts of the body. I go through these cycles of good and bad days. Slowly, slowly, the bad days are decreasing, but that's going from having bad days every day of the week to having 2 or 3 good days in a week. I recently had almost an entire week of good days {5 whole days in a row!}, which was absolutely amazing. But also incredibly sad. Because it hasn't repeated itself. And it has been over a year since I have had a full 5 days in a row of good days :(

And that's just the physical stuff. That doesn't include the emotional toll of being sick {while still trying to be a mama and a wife}, the frustrations of setting up care in a new state, fights with the insurance, oh, and the whole trying to manage it all in the middle of a global pandemic. And I thought I was exhausted back when I started my new treatment plan last July! ;)

The point of this post isn't to complain about how awful Crohn's is {even though it is awful, and I am completely exhausted}. But I want to have a record of this valley, so I can be that much more thankful {if and} when I achieve remission again. Because I am realizing now how much of a GIFT it was for me to have achieved remission so quickly after my initial diagnosis, and then to stay in remission for 7 years. I want to remember how far I have come, even if it's not quite the distance for which I would have hoped after this much time. 

While I have seen some improvements in the last 6 months or so {praise God!}, it has been a slow, rocky climb. I had another Entyvio infusion today, and I am hopeful that this 4-week schedule will help get me on track to remission. I am praying for God's grace and healing, that He might use Entyvio to help. Most days, I do ok emotionally, kind of accepting that my life right now is in Crohn's-mode. I don't like it, but I just try to work around it, do the best I can, and try to give myself a lot of grace. But there are hard days when I just want to feel better, and I just don't know how much longer I can play the role of being sick. I get overwhelmed with the fact that I know that I am not guaranteed remission, and I start to panic that this might be my life indefinitely. 

But I also never thought I would have made it 18 months either. And yet here I am. Still fighting. Still praying and hoping. Taking it one day at a time.