Posts

To Be Thankful

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As I pack, I realize just how much we have.
Packing for a six day Thanksgiving trip for a family of seven (plus an "extra" teen this year) with different food allergies and preferences, as well as medical conditions, can be challenging. We need to remember everyone's medications, supplements, braces, and other medical equipment. We need to pack food and cooking implements for five gluten-free family members, including one pescatarian.We need air beds, sheets, blankets, and pillows. And then there's the Christmas gifts for the family members we're visiting, entertainment items for everyone, cameras, chargers, and all the little things you don't think of until the last minute.
We bring a big cooler that plugs in and acts like a mini fridge to keep our gluten-free foods separate from the other food. We bring blankets and pillows both because everyone but the driver sleeps during the overnight drive and because we'll need them when we arrive. We bring enough cl…

To Complain

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"You cannot hang out with negative people and expect to have a positive life."

A friend posted that in response to something I posted on social media, provoking a thought that amused me to no end... the people from whom I usually get the most negative comments about my blog posts and social media posts about living with chronic illness are constantly complaining that I complain too much. The only responses they have to things I post are negative comments about what they perceive as my negativity.

Then again, they see things a bit differently than me.

To me, complaining doesn't sound like this:

"I can barely move my neck and my arms, I guess it's time for more prednisone and a pajama day!" (Note: in case you're not familiar with pajama days, they involve wearing pajamas all day and lounging in bed, and watching movies, and reading good books, and eating lots of snacks. In other words, pure heaven.)

To me, that's stating fact. If I'd posted "I ove…

To Move Forward

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There is a remarkable amount forward movement in my life these days.

Tuesday Night Sunday School, Epoch Arts Homeschool Co-op, Puppet Ministry, Mini-Production, and other activities are in full swing. We're planning our trip to PA for Thanksgiving. The refugee resettlement ministry I'm a part of has given the "green light" to our parent organization to resettle another family. Our church's Call Committee is moving forward in the process of calling a new pastor to our congregation. And Christmas is right around the corner ... isn't it?

There are so many things about which I'm excited every day. It's wonderful to have much to look forward to...especially when I have so many stressors in my life.

When I was first diagnosed with chronic illness after chronic illness and my health steadily declined, I needed to take stock of what was important and let go of activities that drained my energy and bogged me down. As I figured out what was truly feeding my soul, …

To Get Good News

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My cell phone rang while I was driving. Usually, I just let it go to voicemail, but this time was different. I knew my liver doctor's office was going to call with the results of my liver biopsy. Pulling off the road, I put my van in park and answered the call.

I was prepared for more bad news. The Fibroscan and the doctor who performed the test and read the results said for certain that I had cirrhosis of the liver and the biopsy would tell how bad things were and if there were underlying autoimmune issues complicating matters and needing treatment. When I heard my doctor's voice on the other end of the phone, my heart sank. The nurse I spoke with earlier about my bloodwork results said she would call back with my biopsy results and the doctor would only call if there was an issue needing the doctor's attention. As prepared as  I was for the possible news I was going to receive, nothing prepared me for what I heard next.
"I have good news for you." 
My brain screec…

To Need Rest

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"Spock's great!" 

That's what this overtired, migraine-laden mama thought her eldest daughter said. I couldn't figure out why she exclaimed about a vulcan's awesomeness at church, but stranger things have happened. When I questioned her love of Spock, she reiterated, "this box is great." That made much more sense. 
Then, when we got home, my younger son asked if he could steal a plate. I told him that stealing was wrong, and that he could use a plate whenever he wanted - he didn't have to steal one. He then slowly enunciated, "can I stay up late?" This made more sense. When I said yes, he went into the kitchen and stole a plate anyway. 
This happens a lot. I hear things wrong all the time. My tired, stressed, pained brain cannot keep up with normal speech patterns, especially after 4pm. After four o'clock is usually when most of my children's and some of my activities take place, so this tends to be an issue. I ask people to repea…

To Sink

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I'm not doing well. 

If I'm honest with myself, I have to admit that simple fact. I'm not doing well. I'm sinking into depression and anxiety. I'm struggling to come to terms with what having cirrhosis of the liver means for my life - for the quality of my life and for the quantity of my life. I still have a week to wait after a liver biopsy for more answers, and possibly more bad news. I'm not sure how much more I can take. 

I struggle most in the quiet moments and with the smallest things.

Trying to sleep at night is torture. Thoughts of the negative effects my combination of illnesses is having on my family - what this is doing to my children - constantly assault my mind. I don't want my children to have to go through watching my health decline to the point that I need a liver transplant and all that entails. I don't want to put my children through losing their mother while they're still relatively young. I hear people bemoaning turning fifty, when …

To Transform

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When Alia, my youngest child, was a preschooler, she assumed that boys had long hair and girls had short hair. After all, her sister and mama had short hair and her brothers had long hair. She would meet someone new, look at their hair, and use the pronoun she associated with their hair length. Sometimes she was right ... more often than not, she was wrong. Someone would correct her, and she would continue with life using the correct pronoun for that person's gender, eventually learning that outer appearance had nothing to do with gender.

Recently, I was having a conversation with someone who was talking about their grandchild, who was born male, but identifies as female. She came out as transgender years ago and has been living as the wonderful woman she is ever since. Yet this person refused to call her by her chosen name and her appropriate gender. Their reasoning was that she would always be their "best buddy" grandson...as "he" had been from the time "…