That’s me. Well, part of me. There are a lot of parts to who I am as a person. One part, a new/confusing/trying to be courageous part, is the wife of a chronic illness sufferer.
My husband, Sean, and I were married on a breathtaking winter day in March of 2018. About ten months prior Sean was diagnosed with Primary Sclerosing Cholangitis (PSC).
Choosing to Live with PSC
Lots of questions, right? What is PSC? How is PSC different from other chronic illnesses? Is there a way to fix it? What does Sean’s diagnosis mean for his future? What does it mean for our future? What about our plans…our dreams? Can you plan a future with a chronic illness?
- PSC affects the bile ducts of the liver
- Bile ducts in PSC patients are too skinny to allow bile and other toxins to leave the liver/body system properly
- Leads to cirrhosis of the liver
- Side effects:
- Itchy skin
- Jaundice skin and eyes
- Internal Infections (a.k.a extended inpatient stays)
- Eventual liver transplant may be necessary (*in our case it’ s definitely appearing to be necessary)
My first thought bubble was: “Ok. A chronic illness. At least it’s not cancer*. We can figure this out. We CAN make this work.”
Then I began reading the results of my Google search. It was discouraging at times, but I still fought to be internally optimistic…or maybe I was in denial…I go back and forth on those two.
*Cancer seems more immediate and therefore more dangerous to me…just my opinion though.
There is hope. Always.
It’s been about two years since Sean was diagnosed with PSC and it’s been almost a year since our wedding (YAY US!!). I’m confident in saying that we have both individually and as a couple done well thus far on our journey together. We’ve answered a few of those questions for ourselves. We’ve also added about 563 more to that list, still unanswered.
There will always be unanswered questions. We aren’t meant to know it all. In my belief, however frustrating that can be at times, that’s just the way it’s supposed to be.
That’s the encouraging note to end this post on…
We don’t need to have answers to all of the questions. We won’t. We can’t. It’s impossible. THAT’S A GOOD THING! Our lives are always evolving. God is constantly working. He never sleeps. So the questions will keep coming. The answers will keep changing. We will keep hoping and trusting that there is more to life than just the questioning.
Never stop working to find the hope. Where have you found it recently?
You are fulfilling Joshua 1:9 “This is my command”, says the Lord, “be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” That’s where I find my hope, too! Great blog! Look forward to the next one!
Thank you! I was thinking about adding a verse to this post and that one is very fitting. 🙂
That’s such a great verse! It’s an easy one to memorize, but I think it’s so important for our day to day lives! I also love that its a command! DO NOT be afraid! Or discouraged! It’s wonderful to know that God KNOWS that we tend to be like that, and yet, He tells us over and over again not to be. Not because He is frustrated with us, but because He wants us to have joy and peace, not fear! And how great is it that He is with us, *wherever* we go! That includes things like hospital stays, long and sleepless nights of feeling awful, and on good days when things aren’t so hard! Can’t wait to read the next one, either! Definitely recommending this to my Mom, who also has a chronic illness!! 🙂
Thanks, Kate! I hope it will be a source of encouragement to your mom. 🙂
Dana, you are in our prayers daily. God, the God of all hope, will work everything together for your good and He has everything under His direction. Keep trusting and we will keep praying❤️❤️❤️❤️
Thank you for your support. It continues to mean so much to Sean and I. <3
Thank you for visiting my blog. Come back soon! 🙂
Great post.