Still Sick

This post is part of the 31 Days Writing Challenge, in which a group of writers post a piece every day for the month of October. Want to read all of my posts in this series? Click here

On Fridays this month, I’ve been telling the story of Husband-Mans journey through illness this year. I know that today is Thursday, but I figured you’d want to know how he’s doing now. 

So, how does Husband-Man’s story end?

Isn't he cute?

Isn’t he cute?

It’s not close to over yet. And I’m very thankful for that. The story of his sickness will only be over when he dies and is in heaven with Jesus. When you get diagnosed with an autoimmune disease, you don’t ever get rid of it. Sometimes you go into remission, and other times you don’t.

His liver hasn’t been inflamed for the past six months, thanks to the treatment he’s received. Next month, he’ll go back to the doctor to talk about reducing the amount of one of his medicines gradually (barring any other issues) until he’s off of it completely. Then, he takes another drug for a few years to give his liver a chance to heal. Then he gets another really fun test to see how his liver is doing, and we go from there.

The rest of our lives is going to be a waiting game with this illness, but the rest of our lives are a waiting game regardless. What matters is how we choose to wait.

This month, we’ve been thinking through what we wait for and how we go through that time of waiting. For me, me this intense period of waiting has opened my eyes to the opportunities that I’ve missed because I was waiting passively. I have spent so much of my life waiting without actively seeking God in that waiting. Waiting on Husband-Man’s health has forced me to turn to God, because I knew I had no where else to turn. I’ve had the opportunity to live every day like his life was in danger, and have learned to appreciate him so much more. I’ve had to rely daily on God’s provision of strength and grace. I had the opportunity to learn that waiting is a way that God draws me to himself.

And it’s been a blessing. A huge, painful blessing that has impacted my life. I’m so thankful for this blessing, because if God had not brought me though this, instead of enjoying my time with Husband-Man and being active with him while he was sick, I would have sat idly by waiting for something to happen and would have missed the opportunity to walk with him through one of the hardest times of his life.

How has waiting actively blessed you or your loved ones?

Results

This post is part of the 31 Days Writing Challenge, in which a group of writers post a piece every day for the month of October. Want to read all of my posts in this series? Click here

On Fridays this month, I’ll be telling the story of Husband-Mans journey through illness this year. This post is about our struggle with test results.

After three months of tests and agony, Husband-Man started getting phone calls from staff at his specialist’s office. One nurse called and said that his test indicated that he didn’t have autoimmune hepatitis, so we went in for another (much less painful) test. After the easier test (an endoscopy where Husband-Man was put to sleep before they scoped his insides), he got a phone call from another nurse that he had autoimmune hepatitis and that he needed to start treatment immediately. And the nurse calling didn’t know why he had been giving conflicting reports, so she couldn’t tell us what was going on. And she took a message for the doctor, but he didn’t call back.

Husband-Man didn’t know what to do. We had spent so much time waiting for news, but the news we were getting didn’t make sense. We had a diagnosis, but we didn’t know where it had come from. And we couldn’t get to the source. We couldn’t get to the doctor. Husband-Man called and left messages for the doctor, and the doctor would call back when he was asleep. And when Husband-Man would call back, the doctor wouldn’t be available.

So, Husband-Man scheduled an appointment. And he found out that on a scale of 1-4 (4 being the worst damage that can be done to your liver and 3.2 being irreversible damage), the damage to his liver was a 3. He found out the the second test was to rule out another possible condition that could have done so much damage to his liver, and that there was no sign of the other condition. He found out that they only way to know for sure was to begin treatment and see if the markers in his blood indicated that the swelling in his liver had decreased.

So, we got a diagnosis. And the diagnosis was “wait and see”. I wanted to curl up and cry. So I did. Why was God making us wait so long? Why couldn’t we just have definitive news and have the opportunity to deal with it?

But, with the diagnosis came treatment. And the treatment reduced the swelling of his liver. And slowly, my husband started eating again, feeling like moving, and turning back to his normal skin tone. And eventually the diagnosis of “most likely autoimmune hepatitis” became “almost sure autoimmune hepatitis”.

Day 24

Have you ever waited for some major event and found out that it was just another step towards more waiting? How did you react?

Gaining Weight

This post is part of the 31 Days Writing Challenge, in which a group of writers post a piece every day for the month of October. Want to read all of my posts in this series? Click here

On Fridays this month, I’ll be telling the story of Husband-Mans journey through illness this year. This post is about his struggle with food.

If you’ve ever cared for someone who was quite sick and didn’t feel like eating, you know  how painful it is to know that they’re having to force themselves to eat. If that sick person is 6’1”, normally skinny Husband-Man, it’s down right scary.

When he got sick, he completely lost his appetite. At his lowest point, I used a “weight loss” app to track his caloric intake to make sure he was getting at least 1,500 calories a day. Usually, he eats about 3,000 a day.

I did everything that I could to get him to eat. We went to the store in another town to get tempting foods that he might feel like eating, and on each trip, he had to go sit in the front of the store and wait for me to finish shopping because he got too tired. I bought snickerdoodle muffin bites and protein powder and big tubs of ice cream. I bought vitamin-D milk and frozen pot-pies. I didn’t care what was in it, as long as it had calories.

At his lowest point, he weighed 15 pounds under his healthy weight, which is 10% of his original body weight. Before he got sick, he was told that he had 3% body fat. So that other 7% was coming from vital muscle and other organs.

I came home at lunch to make food for him and to make sure that he was okay. And I agonized. We waited for a diagnosis, but we waited for something more tangible. We waited for his appetite to increase.

It’s like waiting for water to boil. It’s not a fast process, especially when someone doesn’t feel like eating. We waited for him to gain weight. And life kept going. I still had to go to work every day. I still had to live life.

Just last month, he finally got back to his “normal” weight. I tried to celebrate by making him eat. He thinks I’m weird. It was a long process, but that tiny wait is over. And it’s wonderful.

God was good when Husband-Man didn’t eat. God is good now that he’s eating again. (He’s eating a lot, in fact.)

Day 17

Today, are you waiting for a painful kettle of water to boil? Or are you celebrating that fresh-brewed cup of tea?

 

Getting Sick

This post is part of the 31 Days Writing Challenge, in which a group of writers post a piece every day for the month of October.Want to read all of my posts in this series? Click here

On Fridays this month, I’ll be telling the story of Husband-Mans journey through illness this year. This post is about when we first found out that Husband-Man was sick.

At first, we just thought it was post-graduation exhaustion. I had just finished a part time MBA while working full time, and Husband-Man had just finished two bachelor’s degrees and a minor. We traveled a lot while preparing for finals to see family during Thanksgiving. Family had just come in for graduation and Christmas, and we had spent days at my parent’s house.

So when Husband-Man said that he didn’t feel good when we were supposed to go to our friends’ for New Years Eve, we didn’t think much of it. We were sure that he was just getting some winter-ick and settled in for the night. He fell asleep at 10:00 PM and I stayed up watching chick flicks. It felt pretty normal.

But his midsection kept hurting. He went to a retreat with camp friends, and his midsection was sore. His stomach hurt. He felt a little bit slow, but we didn’t think it was a big deal. He was just tired from too much school and not enough rest.

He still wasn’t feeling good. We were starting to get worried, but Husband-Man hates going to the doctor. He kept putting it off and putting it off.

And then, one morning, something else happened. His urine was the wrong color. (Don’t get offended. Everybody pees.) It turned the color of orange Mountain Dew. And we both got scared.

So, he went to the doctor. She ran test after test, and discovered that his liver was inflamed. Really, really inflamed. Almost to the point where he would need to be put in the hospital. His levels were so high that she called him every day to check and see how he was doing. She sent him for tests every other day to make sure that his liver inflammation was still within “acceptable” limits. (“Acceptable limits”= not quite to the point where he has to be put in the hospital.) She consulted with specialists at university hospitals and called us with updates. She researched and ran more tests. The tests continued, and eventually, he got referred to a specialist.

And the whole time, Husband-Man was getting worse. We didn’t know if what he had could be spread, so we stopped visiting friends. He didn’t hold new babies, just in case. He got off the couch less and less. He watched a lot of Star Trek. He played a lot of games on the Wii. He didn’t want to eat anything. His skin turned yellow. And one snowy day when I made snow cream, I noticed that his eyes were yellow.

He didn’t want to tell people that he was sick because we didn’t know what was wrong. Our families knew that he was sick, and my coworkers knew because I would burst into tears when on the phone with him after he got more news from a doctor and because I took so much time off work to take him to the doctor.

I was terrified. I would cry at night, worried sick.

And so the waiting began. “Life” kept going. I still had to work. People got married, had parties, and went on with their lives. I was consumed with the fact that my husband was very ill, but that we couldn’t do anything about it. There was nothing that we could do but wait.

Wait-Series Image

Have you noticed that when you’re in a crisis, it seems like life should stop? When has your life seemed to stop while the “rest of the world” keeps going?