There are so many resources available to patients online, but blogs offer a particularly clear window into what life is really like with a chronic illness. Blogs give patients the opportunity to connect with others who may have had similar experiences, which can help us feel less isolated. Blogs also offer us the opportunity to learn from one another!
The Mamas Facing Forward Featured Blogger series will connect you to blogs featuring real moms living with chronic illnesses – all of whom find their own ways to keep facing forward! This article originally appeared on Crohnie Mommy and is reprinted here with permission.
If you have a blog post you’d like to submit, please email us at info@mamasfacingforward.com!
Into The Unknown
by Suzy Burnett of Crohnie Mommy
Wow, I really don’t know where to start, so I guess I’ll jump right in. I went back and forth as to whether or not I felt like doing a blog post, but when it came down to it, writing is cathartic, and right now I think we’re all doing what we can to push through during this time of uncertainty. I picked the title of this post for two reasons. Our sweet girls can’t stop singing this ballad from Frozen Two, and eerily enough, it seems to capture the very essence of what our household is feeling right now. Needless to say, the last few weeks have been a whirlwind, so forgive me if my thoughts are a bit scattered. We welcomed our sweet baby boy, Guy Richard Burnett, on February 29th (yes, an incredibly special Leap Year Baby), and since then, I’m having a hard time keeping up with the events that have followed. Usually bringing home a newborn is an incredibly special time that involves visits with family and friends, and adjusting to the new addition while surviving on minimal sleep. Things are a bit different now as we’re being confined to the house, with no relief support. Postpartum can be difficult in itself, but this time around has brought new challenges and uncharted territory. I will save his his birth story for a separate entry, because he deserves that.
Now, onto the state of the world. Does anyone else feel like they’re in the Twilight Zone, or on an episode of the Walking Dead? I’m talking about Coronavirus, or COVID-19. Never could I ever fathom that something like this would happen. I remember seeing the first few cases reported in China on the news, and not reading too much into it. I had hoped that with proper care those affected would get better. The last thing I thought would happen is a global pandemic. This obviously touches everyone in one way or another, but because my blog is geared towards someone who has Crohn’s disease, I need to devote special attention to that.
Do any of you suffer from an autoimmune disease, or have a loved one who does? Do you have a parent, or grandparent over the age of 60? Do you have a two week old at home? I checked all of these boxes. Whether we’re at a higher risk ourselves, or know someone who is, these are reasons for concern. I am pleading with you, please stay home. When I see the news coverage of the spring breakers packed on the beach, my heart sinks. When I still see people hopping on a plane for vacation, I can’t help but wonder what their mindset is. I’ve even seen posts of people “checking in” to their local gyms. That is one of many places that are a cesspool of germs. Try and practice common sense. Many of you out there might think you’re invincible. Just because you might not be showing any symptoms, doesn’t mean that you don’t have the virus, or that you can’t pass it on to someone else. That someone else, might be immunocompromised. Because Crohn’s disease is one of the many autoimmune diseases, this puts me in the high risk category. As I watched the national news last night, I sat in fear as they interviewed a woman who also has Crohn’s disease. She too is scared of the unknown. It’s so easy to fall down the rabbit hole of “what-ifs,” so after allowing myself to have those moments of panic, I decided to collect my thoughts and focus on what it is I CAN do.
I think so many of us feel helpless right now, and it’s very normal to get down. One of the ways we can help is to think of small ways we can contribute. Do some research and find out how you can help your local community. We’re all going through this, but some people are impacted more. As now a family of five, we’re very fortunate to be able to put food on the table each and every night. Several others do not have that luxury.
Food insecurity is a main issue right now, and one way to help is to get in touch with your local pantry. If you’re interested, please go to Local Pantry Information for a list of pantries that are accepting food donations. Second Harvest on a program called, Care Box Challenge. For as little as $10, you can help a family in need. For more information, click HERE. Several restaurant businesses have taken a hit, but there are ways we can help. Order delivery, or takeout. Food can be left at the door, so you can avoid a hand-to-hand exchange. Eat Street is a wonderful resource to check out your local options for food. Order groceries online and have them delivered. Metcalfe’s, Hy-Vee, Pick n’ Save and Woodman’s are all offering this service. The Targets and Walmarts of the world are offering curbside pick-up as well. Be kind, and tip well.
If you’re looking for other ways to help out, I read a wonderful article in the Washington Post, that lists several options. Please see HERE.
Through all of the loss, despair and darkness, I’m overwhelmed at how people are uniting. Yes, we may be separate, but we’re in this together. Keep posting fun pictures and videos of how you and your loved ones are passing the time. Dress up silly, throw a dance party, bake yummy treats, do a scavenger hunt in your backyard, stay up too late……or in my case wake up every two hours to gaze in the beautiful eyes of our sweet baby boy. The other day I came downstairs and my husband was dressed up in his Chewbacca costume. Why? Because it’s fun and he can. Make each other laugh. You catch my drift. Focus on what you do have, and hold it close. If you need to cry, cry. I don’t cry often, but when I do it’s the real ugly cry. Crying can be incredibly therapeutic. Keep the faith people. Whatever that means for you, whether it’s religious, or spiritual, keep doing it. Take deep breaths. We’re in this together.
Lastly, I’ve stated many times before that knowledge is power. I’ve read many posts on social media lately that say to turn off the news, and wash your hands. Although I agree that too much of a good thing can lead down a dreary path, the facts are critical right now. I actually encourage you to watch the news, and yes, hand washing is good practice, but that alone isn’t going to prevent you from catching the coronavirus. Take heed from the CDC, and all of the professionals sharing their expertise on how to navigate through this crisis. STAY HOME, STAY HOME, STAY HOME. A huge heartfelt thank you to the family members, friends and complete strangers putting their lives on the line so they can care for those who are sick.
For those of us with an autoimmune disease, this is an extra scary time. The best advice I have is to share with you what the Crohn’s and Colitis Foundation has posted on their site. Please follow the link below:
