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Category: Life

Only Good News

Only Good News

I feel like a normal person again. Since our last post my hands have gotten significantly better. I can use knives again… and feed myself… and clip my fingernails. I get excited about every little bit of progress. Sometimes it seems like a dream when I think about how bad I was, and I feel like I was being dramatic back then because of how good I am doing now. Last two months I started working full time again in November. It…

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Living in the Now

Living in the Now

It’s been far too long since I posted an update on Josh’s condition, so here we go, finally. Specialty Clinic Re-Cap As many of you know, at the end of July we made a spur-of-the-moment trip to Michigan. Josh had experienced a serious negative reaction to the medication he was on (Syprine), which caused his symptoms to worsen significantly.  In the days leading up to our trip, Josh’s entire body was shaking constantly, even while lying down. This was a…

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Holding On

Holding On

Warning: these first couple of sections are a bit of a downer, but just hold on. General Update It’s difficult to want to give an update when the news just isn’t what you were hoping it would be. Josh started on Syprine (the original drug he was prescribed in April) about two weeks ago. Although the Galzin (zinc acetate) that he was originally taking was slowly ridding his body of copper, his tremors were not responding to the treatment. Our…

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Gratitude and Taking Health for Granted

Gratitude and Taking Health for Granted

Taken for Granted It is easy to take your health for granted, especially when you’ve never experienced major health issues. It’s funny how when we get sick, we feel as if we would give anything to be healthy again. Once that health comes it is easy to forget how much you longed for it. Then there are ailments that I have never experienced and may never experience. One good example is being paralyzed. It is so wonderful just to be able to…

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Labor and Delivery: A Spectator

Labor and Delivery: A Spectator

I thought I would also share my experience from when our son was born, so that we have a more complete record of Shaylee’s labor and delivery. However, I will warn you that this is not nearly as detailed or exciting as her story. Early Labor On September 15, 2016 Shaylee finally went into labor. We were pretty ready for our son to come at this point. So Shaylee was trying some techniques on her own to further the process along. I…

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Labor and Delivery: Let’s Get Real

Labor and Delivery: Let’s Get Real

“Our son came into the world exactly one week early on 9/16/16 at 1:40pm. He was born weighing 8lb 3oz, and measuring 21 inches long. With a head of black hair like his daddy, he is 100% adorable. We absolutely love him and are so happy to have him in our lives.” This is the “birth story” that I originally shared on social media when our son was first born. I think I’m finally ready to share a little more….

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Wilson Disease: Update

Wilson Disease: Update

Three weeks after my diagnosis I finally started a treatment. Initially, the treatment for Wilson Disease seemed simple and straightforward. However, after digging a little deeper, we realized that it is not so simple. There are some pretty serious risks associated with all of the options for treatment, and it definitely didn’t help that my insurance was not cooperating either. As you can see from the image above, we are still optimistic and happy to start on the road to…

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Wilson Disease: The Treatment

Wilson Disease: The Treatment

All I Need is a Prescription Apparently, getting a diagnosis is only half the battle. This past week has probably been more stressful than any of the previous five. I wasn’t even able to talk to someone about setting up an appointment until this past Tuesday (4/11/17), and they initially told me that the first opening was in May. It makes sense that the receptionist would just look for the first available appointment, but waiting another month for an appointment was…

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Waiting, Worrying: Josh’s Diagnosis

Waiting, Worrying: Josh’s Diagnosis

*I highly recommend reading Josh’s post Wilson Disease: My Diagnosis, before reading this post. His post more clearly covers the process we went through, while mine is more rambling and full of feelings. Waiting for a diagnosis for yourself, and waiting for a diagnosis for a loved one are two entirely different experiences. I experienced a little bit of the stress and anxiety of the first situation when I was just over eight months pregnant. Unbeknownst to me or my doctors,…

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Wilson Disease: My Diagnosis

Wilson Disease: My Diagnosis

I want to start by pointing out that Wilson Disease is a very rare genetic disease. It effects 1 in 30,000 or 0.0033% of people around the world. I obviously don’t blame any of these doctors for not catching it sooner, and I actually feel very lucky that the diagnosis came pretty quick. To learn more about Wilson Disease click here. I Don’t Even Drink In late 2014, Shaylee and I were getting life insurance policies. We each had screenings…

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