Last month I participated in a linkup with A Chronic Voice for the first time, and I had so much fun that I'm doing it again. The writing prompts this month are closing, treating, rationing, reminding, and embracing. I appreciate Sheryl's writing prompts because they encourage me to write about things I might not otherwise, and apparently, people enjoy hearing about those parts of my life because my linkup post last month was my most popular post in November!
Closing
How is 2022 already coming to a close? All my life, adults have told me that as one gets older the years seem to go by faster and faster, and I've especially noticed that this year. I think that's a good sign because time can seem to drag on forever when one is very sick and miserable and unable to do much besides stare at four walls and count down the hours until the day is over and one can hopefully escape into the world of sleep for a while before the insomnia monster wakes one up. That was my life for many years, especially in 2018 - 2019, but I rarely count down the hours of the day anymore and usually wake up genuinely happy about another day instead of dreading it.
This week I selected photos to print from 2022 for my scrapbook, and I realized how different my photo album on my phone is compared to previous years because I've been able to be out of bed more. There are photos of me at parks, photos I took of snow, flowers, and sunsets outside, and photos of me spending time with family and friends. Granted I am much more prone to photograph those sorts of things than I am to take a selfie of me lying in bed or to photograph my pills or thermometer, so just looking at my photos from the past year would give a wrong impression and make me seem healthier than I am without context, especially because my illness is mostly invisible and I am frequently told that I look good. But after years of having most of my photographs taken in bed, it's definitely encouraging to see a different camera roll from the past year!
Treating
I continue to intensely treat my chronic Babesia odocoilei infection, and on Monday, I began the antibiotic Rifabutin for my chronic Bartonella infection. I last took Rifabutin in 2017, and it was a rollercoaster ride with a lot of herxing and fevers of up to 105.4° F that eventually forced us to stop the treatment. It seems it is much harder to treat a Bartonella infection when Babesia is present, but since we have decreased my Babesia load significantly, we're hoping that I'll tolerate the Bartonella treatment better this time. Plus, in hindsight we realize how badly I had adrenal insufficiency when I took Rifabutin in 2017, and we are now supporting my adrenals adequately. This is especially important because Rifabutin increases steroid metabolism, and therefore, I need to take more steroids while on it. I've also switched from Hydrocortisone to Prednisone because Prednisone is more effective at reducing inflammation and is more affordable, but I'm trying to figure out the right dose, especially to allow me to sleep. It will take some trial and error adjusting.
Rationing
I've been rationing my energy. On Sunday evening, I went Christmas caroling at a nursing home, and I had to lay in bed almost all day beforehand to save my energy for the evening and was mostly in bed all day after the caroling also. If I want to go somewhere or do something more physically or mentally active, I have to allow for rest time before and afterwards. How much rest I need varies depending on how sick I am, but I'm glad I can leave the house occasionally, even though I have to plan carefully and will feel worse afterwards due to the herxing from the activity and the fact that my body can't produce energy like a healthy person.
Reminding
I've been reminding myself of the Christmas story. Having suffered has made me realize how astounding it is that Jesus willingly came to a broken world and suffered more than I ever have or will. For many, the Christmas season is sad because of pain and hardship, and when the radio is declaring that it's the happiest time of the year and people are celebrating everywhere one looks, grief and reminders of what is not are especially poignant. But it's because of the fact that the world is broken and we need a Savior that we celebrate that Jesus came, so may we focus on the true meaning of Christmas and be filled with hope and joy, even in the midst of sorrow.
Embracing
I've been embracing grief over my illness. I'm 21, and since 14, I have spent the majority of my time in bed and have missed out on a lot of things. Recently, I've been writing my case history for publication in a medical journal with my specialist, and it ended up being more emotionally painful than I expected to read old notes and journals to find the information. Ultimately, though, it has been healing because it has forced me to process things that I'd just been pushing to the back of my mind, and I've begun to feel progressively more peaceful when I look at my old medical records. I like what John Piper says, "Occasionally, weep deeply over the life that you hoped would be. Grieve the losses. Feel the pain. Then wash your face, trust God, and embrace the life that he’s given you."
7 comments
Thanks for reading and commenting, Sarah! I value transparency, and I enjoyed participating in this linkup with you.
Hello Lauren, thank you for sharing so candidly in this post. I think Sheryl’s posts are such a great way for people with chronic illness to connect right across the globe.
I’m so sorry to read how much you suffer Lauren although it is heartening that you managed to make it to carol singing. I think planning activities as you did is a cornerstone of managing any chronic illness.
Look after yourself
Sarah x
Thanks for the comments, everyone!
Ben, thank you for introducing me to a new song. I listened to it, and it is beautiful.
Tammi, you know what’s like to have a chronic illness. I’m glad you think that I did a good job in explaining it!
Mrs. Savage, it’s so good to hear from you! Thank you for following my journey. I am thankful that our families met at speech and debate and that my story was able to help Kayla get a diagnosis.
Anne, I am sorry that both you and your daughter suffer from chronic illness. It is the same way with my mom and me, but we have a special compassion for each other as a result. I will definitely check out your other linkups!
Oh My Lauren, you are so long and I’m so sad you have to suffer so much. I too have a daughter who has turned 17 this year and spends most of her time in bed because of illness. Ironically, I am her main carer despite my chronic illnesses and physical disabilities. We make a right pair! I’m glad you managed to get out more this year, I know what you mean about the photos, I don’t take many because I’m stuck indoors most of the time, and no-one wants to see hospital photos all the time. Good luck on the Prednisone, I had some great results on the times I was on it, but unfortunately it’s not usually a long term remedy. Fingers crossed for you x do come and look at my other linkies. I noticed you liked books too and I have another blog that has a book review linky. x
Thank you Lauren for your openness and honestly. It helps others understand so much better. I’m praying for you to get much stronger again this coming year and that you will be able to continue to process all that you have been going through. I’m sure your medical record can help so many others- so glad that you are writing it. We are so grateful that your story helped us catch Kayla’s issues so quickly. Big Hug, Robyn.