This week is Crohn's & Colitis Awareness Week, so it's fitting for me to update where I am in my journey.
I have been sick for 3 years. It's still hard to reconcile that; it has just become our way of life. For the most part, I have learned to work around it, and we do the best we can. I have been sick for 1/2 of the twins' life, and most of Aiden's, and our Virginia friends and church family have only known me sick. My kiddos faithfully pray for "Mommy to be feel better" at every meal time. And while I am much better than I was, even 6 months ago...I still can't officially say that I am remission.
It was so disheartening when my suspicions were confirmed, and I found out that my Crohn's was active again. I had been experiencing a rapid onset of symptoms for 8 months, but I still didn't want to believe it was true. But I had a good doctor, there were new medications on the market, so I knew I would just have to fight hard for remission again. I had no idea that I would still be waiting to see it, now 3 years later...
I spent an entire year on a drug {Entyvio} that did very little to curb my symptoms or heal my insides. It's hard enough to fight this disease, but to work so hard, put toxic chemicals in my body, only for them to give you extra side effects, but not actually do what they are intended to do...I was disappointed, for sure. But I was going to continue fighting, because what else could I do?
When we moved to Virginia, I was so very sick. Entyvio was not working for me, and I was now trying to figure out health stuff in a new state with a new doctor. I still have nightmares about spending most of that first 2 months here, stuck in a hotel bathroom with 3 kids and a dog running around.
When I moved to Stelara, I was just so tired. Actually physically tired, but also tired of being sick, tired of having to say "no" to things, tired of being the sick mom. While I started to see some improvement, it was still very slow, and I wasn't convinced that I would ever see remission again.
When my doctor moved me to 4 week injections, I was nervous about side effects. I had already experienced quite a few when I started Stelara, and I was not looking forward to experiencing more. My concerns were valid, as I have struggled the last 6 months with debilitating migraines. To the point, where I have had to seriously weigh the pros and cons of taking this medication. While it has finally brought me some relief from my GI symptoms, my quality of life has not yet improved because of the migraines. I was happy to finally have some answers regarding my fatigue though, and I have slowly seen that fade away as my iron levels increase. I still tire quickly than most, but I can happily say that I don't require a daily nap to make it through the day! Which is good, because my children don't let me do that anymore haha {I am incredibly grateful for the extra time they did give me...I realize my children have napped longer than most, and I know that has been a gift of grace from the Lord}.
So here I am, 3 years after my initial symptoms showed up, still fighting, still hoping for remission. This is the closest I have felt to it in the 3 years I have been sick. And while the past 3 years have been a long, slow, difficult journey, I have SO much for which to be thankful.
In that 3 years, God has sustained me in countless ways that most would view as impossible. I am still standing, still functioning. He has brought relief from most of the GI symptoms, and that in itself is a huge praise! He has kept our family healthy; part of the struggle has been battling all of this in the middle of a pandemic. But God has kept us all healthy so that I haven't had any setbacks in my fight for remission.
He has kept me out of the hospital. That is a miracle. The severity of my disease, coupled with how long I have been sick...it's a constant fear in the back of my head, because clinically, it's inevitable. And yet, God has been faithful to keep me healthy enough to avoid any hospital stays for 3 whole years. Even when I have been at my sickest, I have been able to avoid any major issues.
The migraines are starting to slow. I'm not convinced that it's permanent, but I am taking the relief where I can get it. I was having a migraine every 5-7 days, some of them lasting 2-3 days. But I have now gone 2 months with only 1 each month. I am hopeful that my body is finally figuring out how to play nice with the Stelara, and that they will slowly dissipate entirely. Please God.
I have a follow up appointment with my GI next week, and I am hopeful about that conversation. I will keep fighting, keep praying, keep hoping that maybe 2023 will be my year for remission!
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