Soon, I celebrate an anniversary of sorts. Not the kind that you really want to celebrate, but a definite life definer. I was diagnosed with a chronic illness almost twenty years ago. Autoimmune diseases take all shapes and forms and my particular one, rheumatoid arthritis, doesn’t always reveal its affects on the body to the unobservant. To many, I look healthy and fine when many times I am anything but the picture of good health.
With an arsenal of tools from pills to wraps and ice packs like others with chronic pain and swelling issues, I spend much of my time in recovery or preparation for the absolute essential activities of life. We miss out on many of the everyday moments that we, given the choice, would want to experience. No one chooses to spend 50% or more of their life resting or sleeping. But at times, this reality is part of the life of an autoimmune patient. We miss friends and we lose friends because, often, we can’t participate so we struggle with loneliness and depression. A light switch didn’t turn our memories off. We remember and miss our old selves and the abilities we once had, the activities we once enjoyed, and, in my case, the cute shoes I once wore. Real energy sacrificing effort is required to keep from becoming marginalized. Energy, I, often, only have in limited supply. Adapting to a new self or a changing self, as in my case because of my particular disease, takes time, love, and patience on the part of the patient and those that care for them. A somewhat normal and generally pain-free life is possible when the right combinations of drugs and/or therapies are working.
Several months ago, I took an incredible test. Incredible, in the sense, that science and technology has actually developed the ability to determine the activity level of my disease by markers in my blood. Knowing my score on that test made decisions concerning my medication easier for my doctor. The test also comes with an incredible price tag for a blood test, but in the scheme of all things medically related not that bad. The Vectra DA test confirmed what I and my doctor have suspected for some time. The drugs weren’t working. My activity level is high.
I’m not surprised the test came back high. I’ve been dealing with swelling, joint pain, brain fog, and incapacitating fatigue. Some might say they didn’t know. I didn’t look like I felt bad. I have to admit that’s part of my ruse and plan. Maybe, I should share more how I’m feeling but experience has taught me differently. (And that issue, my friends, is for another post.) Forgive me for the missed calls, the condolence and congratulation cards that didn’t get sent or are terribly tardy, and the lack of presence. Please don’t mistake my bad manners for a lack of love, care, and support towards you. I may not be there but my prayers have been.
And if you haven’t realized how I am : How do I make my public life look normal? I choose to be happy and joyful. I attend the things and see the people that are essential to me. Then, I go home and collapse. Somedays, I just can’t go. Those days are the toughest. So for now, I’m saying goodbye to Remicaid and hello to Humira for the next six months. Then, I take the test again and we see.
For months, I have been visiting animal shelters looking for a kitten. I was having a hard time finding the right one. A few turned my head and tried to steal my heart but sadly, they just weren’t the one. My family started hinting that I was being too picky because they thought I was trying to replace the cat I lost. Truthfully, I might have been a little picky but I knew the right kitten was out there for us just waiting to be adopted.
And she was! Lizzie Bennet has come to our house to stay. We brought her home last weekend. She is close to 4 months old with a loud purr, a sweet disposition, and wicked little claws.
She already enjoys good books!
Isn’t she sweet?!
My figurative plate is filled with activities, friends and family while my literal plate is becoming brimmed with goodies. I’ll be back in the new year. I wish you the merriest of holidays!
“Today in the town of David a Savior has been born to you; he is Christ the Lord.” Luke 2:11 NIV Bible
I love finding and reading book lists. I like knowing what others are reading and what they might suggest for me to read. Beyond the biblical story of the birth of Jesus from Luke’s gospel, these books are a few of my favorite Christmas reads.
The poem, A Visit from St. Nicholas, by Clement Clarke Moore is more commonly referred to as Twas the Night Before Christmas or The Night Before Christmas. This selection is my favorite rendering of this poem because of the illustrations by Mary Engelbreit.
A Redbird Christmas by Fannie Flagg is a heartwarming tale interwoven with faith about a newcomer to town, a young girl, and a redbird named Jack.
Two from Galilee by Marjorie Holmes is a lovely retelling of the birth of Jesus and the love story of Mary and Joseph.
A Christmas Carol by Charles Dickens: If you’re like me, you’ve probably seen this story told many ways in many movies. I first read it to discover whether the movies followed the book or not. Some do, some don’t. And like most movies and books, the book is a treat. Do yourself a favor and give it a try!
Christmas With Tucker by Greg Kincaid: I read this one last year and the story truly pulls at your heartstrings. Grab the kleenex box ahead of time.
Mitford Snowmen/Shepherds Abiding by Jan Karon
These short stories are a nice introduction to the town and residents of Mitford and a must for Mitford readers.
“But the angel said to them, ‘Do not be afraid, I bring you good news of great joy that will be for all the people.'” Luke 2:10 NIV Bible