Here we are. Two years ago this month our lives took quite a turn. The last post about my illness can be found here from October 2012. (So sorry, but this post will be less eloquent and more direct. I have very little energy and have attempted to write this post for months.)
If you’ve asked me at any point in the last year “How are you,” chances are good I gave you a blank stare.
The question “How are you” is pandora’s box for my brain. Because I prefer honesty in friendships, my instinct freezes me in place at the thought of answering that question truthfully. Depending on the setting, I probably answered “I’m okay.”
But that’s a lie.
I am so very far from okay. We are so very, very far from the shores that were once safe harbors of “okay.”
Here is our reality, in more detail than I’ve ever shared publicly before.
“How are you?”
No. We are not. I just didn’t want to cry in front of you. Or dump a bunch of truth on you when you were simply being polite. Or, most commonly, I didn’t have the energy to answer.
It was difficult for me to comprehend an illness like this* until it happened to me. Even with my PharmD degree and 7 years working in various pharmacies, this disease confuses and surprises me daily. This situation is unlike anything I could’ve imagined.
My specific disease is:
- so rare it has a name but no FDA indicated treatments.
- classified as a Rare Disease in the U.S. by NORD (<15,000 known cases), but falls under an umbrella term I’ll include at the bottom of this post. Affectionately called The V* Word.
- so invisible I look perfectly healthy.
- relentlessly difficult to treat.
- so brutal on my insides I’ve visited the hospital three times within ten months and need higher doses of IV medication each time.
- humbling. I’ve used a wheelchair (but can’t propel myself) only to be met with patronizing looks as if I’m a teenager out for a joyride in a stolen chair.
- humiliating. I’ve wished I had some kind of mask, or a fake broken foot. Or a sign that says “My insides are broken.” Because I look fine. Healthy even. (Because I’m that young, healthy looking person who walks a few steps up to the wheelchair and then sits down. A person who can walk to a wheelchair certainly doesn’t need one, right? Wrong.)
- mentally challenging and emotionally exhausting, as I suspect most diseases are.
My disease has:
- few treatment options. Every treatment has substantial risks. Recently I failed my fourth treatment. On to the next.
- no recognition. (Until sadly, someone famous died of it less than four years after being diagnosed. Oh how I wish I could’ve met Harold Ramis. For so many reasons.)
“How are you?”
This brings me (again!) to an old soapbox:
Social. Media. Is. Not. A. True. Representation. Of. Life.
How much this disease limits my daily life is so substantial, I’ve lost my job and spent the majority of this year (and the previous one) in a bed. When I have ventured out it was either in an attempt to rest with a change of scenery or because of Life Events. Life keeps flying by and although I miss most things, I can’t miss everything. (my brother got married! my sister graduated!) My smiling face in one picture doesn’t equal health. It equals one half-moment of moving my facial muscles while highly medicated.
“How are you, really?”
- We are tired.
- We are weary.
- I am in pain.
- I am sick of having a fever everyday.
- I’ve forgotten what it feels like to wake up and think “what needs to be done today?” with the feeling that I can actually accomplish any of that. Fatigue is real.
- I’ve forgotten what it feels like to wake up and do anything other than a full systems body check.
- I shower once a week. And it drains me.
- I am mentally and emotionally exhausted. Writing this post is draining and I’ve been postponing it for months. But I want the truth out there. It’s important to see God working even as we walk (or I’m carried) through the valley of the shadow of death.
- I’ve spent a good quarter of this last year in a no pressure point chair my grandmother impulse bought for me off TV because she wanted so badly to help me but didn’t know how. (That chair is now known as “my chair.” Good impulse buy, Mimi T.)
- I feel like I have the flu and food poisoning and arthritis and mono and migraines and countless other things all at once. (I’ve actually had each of those before. Singularly. But now it is all of them simultaneously, all the time. Not exaggerating.)
- My skin is full of pseudo-acne. They’re really blood blisters or foliculitis or red nodules called erythema nodosum. They ulcerate and scar. Sometimes the red nodules protrude so far off my face, they’re measurable with a ruler.
- Depending on the setting, if I’ve been out of the house, I was most likely on some pretty high doses of steroids (and other meds). Because whenever I’ve ventured out this year, there has been a set preventative plan from my doctors to make that outing possible. And none of those plans have fully worked. I still end up in bed for months.
- I’ve changed my diet, but I can’t prepare my own food.
- I’ve switched to as chemical free everything as possible for us.
- I’ve forgotten what it feels like to run errands. To go grocery shopping. To have the freedom of choice.
- I’ve forgotten what it’s like to have energy. To make plans. To keep plans.
There was a time at the beginning of this illness when we wished for something, ANYTHING to show up in my blood work and test results. Now everything is abnormal. Things that were normal once, now pound the walls of my body screaming SOMETHING’S WRONG IN HERE, as if the house is on fire and they’re stuck inside. It feels like every doctor finds something new, and to my knowledge, that’s not an exaggeration.
“How are you?”
Ever ridden a roller coaster blindfolded?
Only you’ve never seen the roller coaster before so you have no idea if it goes up or down or sideways or upside down or if the track continues at all.
And then the blindfolded coaster ride never stops.
And you can’t get off no matter how much you scream, pray, hope, wish, hurt, research, cry. You’re strapped in for an unknown amount of time with only one piece of knowledge:
The name of the coaster.
But the name doesn’t tell you much. No one else recognizes the name of this roller coaster so you’re on your own. And even if they did recognize the name, this coaster is a chameleon. It customizes itself to each lucky passenger, so everyone experiences a different ride. Some ride for two seconds and jump right off. Others plummet off the tracks one minute into the ride.
This blindfolded coaster has held us for two years. With no end in sight.
Now, I’m extremely thankful for knowing the name of this disease because I understand not everyone suffering from an illness gets to know a name. But the V* word is where our info stops.
“How are you?”
- I was officially diagnosed with a specific form of Vasculitis* in November 2013, over a year after becoming ill. This is a fancy word for: My blood vessels swell because my immune system attacks them as if they are foreign objects.
- Most days my husband packs meals for me in a cooler before he leaves for work.
- Being carried to the bathroom because I can’t even crawl due to pain happens too often.
- My husband has learned how to dry my hair, bathe me, shave my legs, and feed me. He is an angel straight from God.
- I dare not drive due to random muscle spasms and cramps, migraines, surges of pain, inability to concentrate, and more.
- My ability to think ten steps ahead now consists of me asking “did I already tell you that? what was I saying?” My family jokes that my brain has gone from superhuman to normal. But they’re trying to cope too. Sometimes humor helps.
- My in-laws come fairly often because they live three hours away. They visited for a weekend, and my MIL ended up staying for the week to take care of me and the apartment and to give my husband a break. Recently our doggy went to stay at their house for three weeks.
- Sometimes my GI rebels in a way that my medications stop working, and my body will only respond to increasing doses of IV medication. This requires emergency medical intervention.
- I have scar tissue in the crook of my arm because I’ve had so many IVs over the past two years.
- During one hospital stay, my IV site had to be moved so often they were one move short of having no more acceptable sites on my arms by the day of discharge. (That is a TON of sites used.)
- Because of the nature of my specific type of Vasculitis, I can potentially have symptoms everywhere I have blood vessels—yes, that means anywhere in my whole body. Many times multiple places at once.
- This disease is systemic, meaning the body acts as if it is generally ill (think mono/flu), in addition to having many other symptoms at specific sites based on blood vessel involvement at the time.
- (If you’ve offered a meal, or help, but left the offer open-ended, THANK YOU so much, but chances are good I’ve been too exhausted to schedule/communicate with you about that help.)
And that’s just the health portion of the past year. Heath problems wreak havoc on all aspects of life, as do unexpected events. But we are trusting God. Even when our trust looks like crying on the floor at 2am, we have faith. It may not be pretty, happy, wrapped-up-with-a-bow faith. But it’s faith. Dirty, painful, inadequate, broken-souled faith.
“How are you?”
I post this to show you a piece of our truth.
How am I?
How are we?
Because we have no other choice. We aren’t going to “keep fighting.” Because that implies we have a choice to stop fighting. This is our reality. This is our life. The V* word is my full time job that costs a lot of money. My husband has two full time jobs. One as a coach. Another taking care of me.
We love you all and appreciate how you’ve supported us through life and especially these past two years. Please continue to pray for my health, my doctors, our faith, our attitudes, our families, our finances, and our acceptance of God’s will. God has a plan. He’s still up to something.
I don’t ask why. Instead I ask when.
We take hope that despite the numerous difficulties we face daily, He is all we need.
****Post publish update:
A GoFundMe site (click this) has been created by Margaret Gallagher for us. Jonathan and I are in awe from your responses to this post. We don’t know what to say other than to thank you ALL, EVERY SINGLE ONE OF YOU, YES YOU READING THIS, for the love and kindness and thoughts and prayers. It feels good to have the truth out there. Invisible Diseases / Invisible Illnesses are real. I know we are not alone in fighting a battle like this. There are many others who suffer invisibly too.
Yesterday was extremely taxing because of this post, yet so emotionally rewarding. We are not facing this alone. We have God, and we have all of you—our friends, family, neighbors. Thank you is not enough. So I will put it the most meaningful way I know how: I love you all. We LOVE you all with God’s love. For every moment you’ve ever smiled or spoken to us, encouraged us, commented or messaged or emailed or texted us, we love you with eternal love. We hope you can feel it.
(Still figuring out what to do with my lemons, y’all. Honestly, they taste a bit sour sometimes. But how could we appreciate the sweet, salty, and bland in life without a dash of sour every so often?)