By Stacey Philpot
Like many, the early stages of my diagnoses were often fraught with a rapid, fluid exchange of emotions and thought processes. One day they were the end of the world and the next they were maybe not so bad after all. However, with each diagnosis, my processing window shortened, and I steadied myself more quickly.
I’ve always been a dichotomy. I am a woman of fierce sensitivity and intuition, but also a researcher. Long before I had a name for my plentiful set of symptoms which seemed to come within different subsets and clusters, I was a lover of medical journals and subscriber to online medical databases, searching the bowels of the internet, trying to determine for myself what my prognosis might be.
And when at long last, those names did come I was still that living, breathing dichotomy. I remain a woman of great faith and hope, who believes and yearns for the miraculous and yet a woman who listens when doctors speak, who researches and evaluates the data and options presented.
One of the names I’ve been given for the eccentric things my body does, the reason I’ve always been sick more severely, more frequently than others is CVID, (Common Variable Immunodifciency Disorder). Perhaps, this diagnosis should have devastated me. However, I found such relief in it, such validation. It explained so much of my life.
Not long after my diagnosis, I started IVIG. Because part of CVID is my body’s inability to make enough antibodies on its own to fight off disease on my behalf, IVIG is an infusion of these antibodies from donors. According to the IDF, a single dose of this liquid gold could contain the antibodies of anywhere between 15000-60,000 people. Mind-boggling isn’t it? It’s also quite expensive, and effective. While it took a few doses, my quality of life is markedly improved as a result of IVIG. The frequency and severity of infections I experienced pre-IVIG has decreased dramatically. I could never adequately express my gratitude to the donors who make this possible or to the doctor who finally spoke a name who made this treatment possible.
However, in all of my excitement, I never stopped to consider the permanence of this disorder. I was already fighting other diseases. I was elated at the thought of some quality of life improvement. I’m still elated and forever grateful for the quality of life improvement. However, IVIG is costly. My monthly co-pay is approximately six hundred dollars. And it is not without side effects. While the doctors and nurses I work with have been amazing to do their best to minimize a headache that can feel like your brain is now too large for your skull for three days post IVIG, as well as the overall flu-like feeling, it is there.
Currently, I have a PICC line, which is used for a daily antibiotic infusion as well as for my monthly infusion. As I sat with my doctor at my last appointment, he told me he thought it was time to place a port, as CVID was a “forever thing” and IVIG would be something I’d need to do lifelong. It’s not that I hadn’t been aware of this. I knew my body wasn’t going to spontaneously sprout antibodies on it’s own. And yet, a port feels so permanent, so forever. I’ve resisted it up until this point for this reason. I like my PICC line for the same reason. I like that the home health nurse can pull it out at any point. I like that it seems to say, “This is only temporary.”
You know as well as I do any time you have an illness of any kind attached to you, well-meaning friends, family members and folks you haven’t talked to since high school will appear from the woodwork to tell you what your outlook should be.
“You cannot accept this! You are going to beat this thing!”
“Don’t even talk about it. That just gives it power. You just have to have faith!”
“You just need to accept it. This is your new reality. It is what it is.”
“Just make the best of it.”
“You need to step up and be an inspiration to others.”
When I was going through a particularly painful time post break-up and bemoaning my existence, my mom gave me a piece of advice, which has proven to be quite useful in this season of my life.
She said, “You have to stop with this I just wish I had done this or I wish it had turned out like that thing. It didn’t. And you don’t know what’s going to happen in the future. What you do know is this is your life now. This is your reality. And you have to figure out how to live within it while you’re trying to make it better.” It was a slap in the face but it’s also been my approach to illness in these years. Yes, I always cling to hope and faith, but today this is my reality, and I have to live within that reality. Denial doesn’t get me anywhere. This is what my life looks like today.
So is accepting a diagnosis a good thing or a bad thing? I don’t know, dear reader. I do, however, believe learning to live within the reality of our today is a winning way to go, while we cling to the hope of a future with limitless possibilities.
Now, pardon me, while I schedule my port placement. And please tell me, having a port isn’t so bad, is it?
Stacey is an author, goofball and avid reader. You can find her blog at chronicallywhole.com where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.