Protecting Kids from the D Word

On different occasions over the years we have talked about the few people in our lives who have passed away. Our oldest, who is 5, i think at this point understands what that means and will sometimes ask questions. When my husband was recently very sick and going back and forth to the hospital this conversation came up a few times as he asked about his daddy and if he was going to be ok. We had a few private heart to hearts where we talked about how the doctors and nurses were taking great care of him and that he was going to be okay. It's hard to see my young one going through this thought process as I know he was feeling incredibly affected and concerned for his best friend. Yesterday after watching my husband change the bandages on his legs the question came up again and we had to answer him the best way we knew how: by assuring him no one was dying and reminding him that daddy is getting better, it just takes time. While we know having Crohn's does not mean dying, eventually some way or another people do pass away. For anyone with kids, have you had these conversations, and how do you field the questions they have about death?

SCD, Doctors, and Tortilla Chips

So in the past few weeks my hubby and I have been doing a lot of research on self-treatment by diet, and came across the Specific Carbohydrate Diet (SCD). While he has been apprehensive to adjust his diet, he has quickly attached himself to this, and so it has sent us on quite a thrilling adventure! Lots of new things to try, and actually it's been great to hear him notice how he feels when he eats something "illegal". Considering the last 3 years he has relied on medication to keep his symptoms in check, I'm excited to see how this will affect him overall. Sadly, I am sitting here eating tortilla chips (gluten free), and salsa....and tired. It's been busy, and in truth, it's a lot of work suddenly doing EVERYTHING literally from home. I do a lot of cooking anyways, but I feel like this has sent me into turbo mode trying new things, adjusting things and just simply the time it takes to run a house, feed a family of 5, and whatever. 3 kids require a lot of attention and so I really have to plan my time wisely, which I am having to figure out fast. Does anyone else follow SCD? How was the adjustment period for you? We are really in our 2nd week and we have actually been enjoying the changes, but yes, there is definately an adjustment period. Like tonight, we are low on groceries, I am tired, and my hubs has taken our two older ones out for dinner, at imnotsurewhere. Anyways, my hope is that after some time he will really have a better idea of what food affects him, but moreso that he will learn to have better control of his symptoms. For more info on this you can visit breakingtheviciouscycle.info. He also had an appointment today to check on his skin wounds, which he was worried were getting infected again. I think he has nearly met every doc in town! He ended up meeting with the resident wound specialist who knows some, but not all about his condition. It ended up being somewhat educational, and so we continue on in this. It was a great reminder to continue to educate ourselves and to learn to do self-care. Regardless of your Crohn's symptoms, I think this is huge, because depending on where you live, and the availability of doctors there are probably times when you will have to help yourself a bit. His specialist is back in the city 6.5 hours away, and our family doc here works at the hospital every other week so it can be hard to see him on short notice. I read recently that GI patients are waiting upwards of 4 times the expected wait time to meet with doctors. I'm not much surprised by this as when we make an appointment with his GI doc there is usually at least a month wait, if not more, unless it is an emergency (which it is usually not). But for those patients who are in really rough shape, or who are in the process of getting a proper diagnosis, how do you/they cope in the meantime? Our GI specialist in Calgary now only works 1 1/2 days a week (a WEEK) and she is excellent. I wonder what it would take to get more docs trained in this field because they are clearly needed.

Marriage: In Sickness

I wrote this a short while ago after having watched my husband go in/out of the hospital to treat an infection due to a flare up, and associated skin disease, which he is still recovering from. This last month has brought me one of my greatest challenges, probably in my life, but most certainly in my married life. I wonder sometimes when vows are spoken how we find a way to commit to them unknowing what lies ahead in life, and how long that love will be allowed us. In sickness and in health. Of course, in health. Most of us probably marry in our peak health, young and vibrant. When we married, I was 21, he was 26. We were young, in love, full of hope and excited for the future. It wasn't long after we were married that a diagnosis came that rocked us, and while I knew of past health struggles, there was no diagnosis, and no cause to worry. No evident struggle or fight with sickness. A few months took us on a whirlwind of doctors visits until we met the one who would say what no one wants to hear. I remember watching the doctor scribble it on a paper before she said it as if to convince herself of what she was going to say, and pronounce to my husband that he had a chronic sickness which has no cure. I cried. I remember in later days grieving heavily over this diagnosis and the helplessness I felt towards it, and in that, this need to give away what was not mine. The diagnosis was not mine. My husband's life was not mine, but God's. I had to somehow grace that back to Him, which had been so graciously given to me. Fast forward about 6 years and we now have 3 kids together, and while the struggle with his condition has been up and down, it seems relatively quiet to our daily lives. Until 2 months ago. He shows me something. I quickly dismiss, but wonder, is he having a flare up? He says he doesn't know. We are now far away from specialists and knowledgeable doctors, and it's been so long since we've seen this that we wonder if it could be true. Awhile later, it has gotten much worse. He is laying sick on the couch, and so I tell him he needs to go the hospital, which he does, and continues to go back and forth for another 5 days to treat an infection. He is admitted one night, when I am at home with 3 sleeping babes, unsure of what is happening. It is an incredible struggle to know which is more important, to protect and take care of my kids, or to be at my husbands side. Not that one is more important than the other, but it is an incredibly unfair decision to have to make. I am incredibly lucky that weekend to have family coming from out of town, and so I wait for them to arrive. Their presence allows me to sneak away for important appointments and offer support to the man who gifted me with the three beauties who wait for us at home. I'm not sure which is worse, to watch your husband or your children be in pain. Maybe they are equally the same. In any case, it requires a lot of effort for me at moments to hold myself together, mostly because I know he needs me to do that. On a particularl day, I find myself crumbling amidst my surroundings which bring back unfair memories of a lost loved one, unrelated to what we are going through. It is hard nontheless. A few days later, a doctor informs him of the grim diagnosis the hospital docs thought he had, which sends my mind into other places. I suddenly have to process the thought that I may have lost him, and I was at home. Waiting. I realize then how quickly things can change. It puts into perspective this incredible chance we have to love, and to give our best to someone based on what we can do for them today. My faith tells me that God gives all good things, and yet He is still there in the midst of very hard things. He is there even at death. And I know that I can only love a pint size compared to Him. This thing called love which our hearts naturally know how to feel and do, I realize is only a small glimpse into how He feels for us. Walking through sickness and pain with someone you love is a test, albeit one of the hardest. I won't say I enjoyed this, but I am grateful I could be the woman watching him go through this with amazing strength and dignity. And faith. This man challenges me to believe for things I feel are out of reach, and to ask for what seems impossible. He has shown me what it means to be strong in spite of pain. He has been strong for me, even when he was the one in physical pain. Nearly 8 years into this journey of marriage, I wonder what could come next. We have barely dipped our toes into this life long adventure of learning and loving, and I can't imagine what other trials and hardships we will likely go through together. But I am thankful he is mine. In sickness and in health.

Coming to Terms

My husband was diagnosed with Crohns disease nearly 6 years ago, but was probably undiagnosed for quite a long time. I am thankful that he has not been chronically ill, or I should say, constantly ill as some with Crohns disease can be, although when he does have a flare up they tend to be big ones. In the near 8 years we have been married, he has had 2 significant flare ups, one of which revealed a diagnosis of a rare skin condition also associated with the disease. He has been on medication for the last 3 years. It took a long time to come to terms with the reality that he had been sick for a long time and would require medication, but he has done very well. We now have 3 kids together, all of which are healthy and beautiful. Having recently gone through a significant flare up and finding no support in our area, we are starting this blog as a way to reach out to others, regardless of location in hopes that we can connect with people and families who also have Crohns disease, and also offer support. We live in a small town where specialists are at a minimum 4 hours away and most people have no idea what Crohns disease is, and doctors do not know how to properly treat it. Having gone through what we have together, and out of concern for our kids who have a chance at also being diagnosed with the same disease later in life, we've agreed to become as educated as we can and also to get involved as much as we can in bringing awareness to this common, yet misunderstood chronic condition. We are certainly not experts. We are simply a family learning to cope and care for one of our own. Hence, the name of our blog. We hope you find some encouragement and support through this blog, if nothing else, and wherever you are in your diagnosis, please feel free to share that too.