Managing post-diagnosis grief

Since 2012, my health has been in a downward spiral. And really, if I start at the absolute beginning, it was in 2009, when I had mono. When I talk to my medical team, I always refer to this as the beginning, because I haven’t felt 100% since then.

One November night in 2012, in my first apartment after college graduation, I woke up with horrible pain and pressure in my abdomen. I was shaking – or shivering – and I spent the night on the bathroom floor next to the baseboard heater trying to keep warm and wishing I could throw up and feel better. My job at the time was pretty unforgiving with only a few sick days for the year and no one to fill in for me if I was absent. I went to work and suffered through the next couple of days until the weekend.

I slept all the time, which I attributed to a busy and stressful job. I thought if I exercised more, I’d have more energy. That’s what they say, right? I started and finished the P90X program but developed a hernia in the process, and it still didn’t solve my fatigue problem. Lunch breaks were designated for naps in my car in the parking lot. My fairly active routine deteriorated into survival mode.

And then there was anxiety. Lots of it, building up and piling on until I had moments when leaving the house for anything but work could send me into tears. I hated eating out – I still kind of do – because I never know when my stomach pain and digestive issues will appear in a fury. I didn’t want to fly with my husband, a pilot, because I knew I’d be trapped in an airborne tin can and it would be many minutes before I could get relief if I needed it. I still feel that way. I am convinced anxiety is the one of the toughest enemies.

I saw my nurse practitioner shortly after we got married because I thought I was depressed. I told her about my sleeping, my apathy, my inability to feel anything except irritation and anxiety. She asked if it was interfering with my ability to function normally. In that moment, I dismissed it all, because I was still going to work, still eating, still sleeping. I wasn’t sick. I had months where I felt better than others, so it had to be my fault when I felt sicker. And she didn’t know how to help me. She ordered a blood draw that day, but they lost either my blood or my results, and no one ever admitted to me that they needed to test again. I may have had an ITP diagnosis in 2013. I could have been in treatment that much sooner.

Last year, when finally I was diagnosed, I felt so much relief. Fear, yes, but more relief. Because I didn’t have to pretend I was feeling okay anymore. I didn’t have to listen to people dismiss my symptoms. It wasn’t all made up in my head. I didn’t have to “just suck it up and deal with it.”

Often the initial reaction [to a diagnosis] is one of relief; you may feel grateful to know the cause of previously unexplained symptoms. This is especially true with an autoimmune diagnosis, since the disease may have been progressing for years with confusing periods of illness and remission that are often dismissed by family, friends, and even physicians. A diagnosis can offer you much-needed validation. It is not uncommon for your relief to quickly fade, though…

From The Autoimmune Wellness Handbook by Mickey Trescott, NTP and Angie Alt, NTC, CHC

Relief lasted a long time – four or five months, maybe. But then there was grief. In the past year I’ve been in all five stages of it, not necessarily in linear order.

I have felt guilty for grieving after my diagnosis. I mean, I was grieving, in some form, a loss of my own life. This is not to discount other forms of grief and loss. It’s just to acknowledge what a diagnosis can do to a person. Deconstruction starts. You realize you can no longer live life the same way again. Priorities change. Life seems a little shorter, more urgent, more uncertain. When everyone else has a myriad of choices, you may only have a few. The current takes you where it’s going, and you grieve over loss of choice, loss of relationships, loss of a time when health didn’t dictate your days.

Grief isn’t like a round of antibiotics. You don’t cycle through it once and problem solved. Grief is like an autoimmune disease. Good days come unexpectedly. You enjoy them and try not to focus on the loss. Bad days immobilize. No one knows a cure. Remission. Relapse. Remission. Relapse. Your body doesn’t care when – whether it’s Christmas or you’re on vacation or you have an important meeting.

I have no control. No medicine to make it better. I just let the current take me, live with purpose, and wait for a better day.

And I want to note – no one knows if there is a connection between anxiety and digestive symptoms and my one autoimmune diagnosis. From my research, it looks like many autoimmune patients eventually receive diagnoses of multiple autoimmune diseases. Maybe we’re headed in that direction. I’m not sure. The trouble is our healthcare system isn’t really that great at tackling autoimmune disease and chronic illness. It likes the patients it can treat and kick out. But I’ll talk about that in a future post.

It’s hard to be a childless Christian

I know, I know. I hear you already. It’s hard to be childless no matter who you are. It’s hard to be a Christian. It’s hard to want things your peers don’t want. It’s hard to be single, to be married, to be different. Life is hard, period.

Our four year wedding anniversary is coming up, and we’ve been reflecting on how our relationship has changed in the six years we’ve known each other. Our decision not to have children – yep, we decided that before my diagnosis, and it was a good thing we did – has been questioned, praised, shamed. We knew it was the right thing for us to do. We didn’t know why, but some circumstances have led us to follow instincts the Holy Spirit has anchored in our hearts even though we can’t clearly see why.

Fear of disappointment
As a kid, I was driven to excel by the desire to avoid disappointment, and to fulfill the expectations of my peers and family. I enjoyed school and most of the tasks to which I set my mind. But disappointment chased me down, and being the one left behind – that was my deepest fear.

So here, at 28, finally embedded in both a career and church I love, I can safely name everyone’s primary expectation for me. According to the way of all things, I have checked off all the other things I should do first, and now, pushing 30, we should probably hurry up and have some kids.

I feel a little bit naked writing this, letting all these strangers into our lives and our marriage. Please share a little grace with me as you read the rest.

Fighting the narrative
At first, I felt angry. The Christian narrative about being “fruitful” made me feel sinful and selfish, and more than anything, I didn’t want to disappoint people. The conflicting forces resulted in someone who felt really quite hostile about the topic. (If you were the recipient of this hostility, I apologize. I wish I understood then what I do now.) I felt helpless to fight back when people were quoting a “commandment” to “be fruitful” from Genesis. I didn’t have a Bible verse. I just had an instinct, a feeling.

Then I remembered a time when some “wiser” person quoted scripture to prove me wrong. As a teenager, I gave all the money I raised to another kid in youth group who couldn’t afford to go to camp, and I stayed home. The youth pastor asked me why God would lead me to stay home from such a wonderful experience, and I told him I felt this was the Holy Spirit’s direction. He interrogated me, as if I’d have some irrefutable scripture to quote, but I had nothing. All I knew was someone needed money, and I had it, so I gave it away. I acted on nothing but an urging from the Spirit.

The “ah-ha” moment
When I was diagnosed with ITP (chronically low platelets), we had this ah-ha moment when everything made sense. Our desire to wait for children, or maybe never have children, possibly saved my life. (In case you were wondering, low platelet counts are pretty dangerous for pregnant women. You can read more about my ITP story here.) The diagnosis, as scary as it is, brought me relief I can’t explain. It freed me from these scripture-mongers trying to run my life with their literal interpretations. And it freed me to start fighting against the narrative that childless Christians by choice are sinful and selfish.

I read this terrific article by Raymond Van Leeuwen in Christianity Today, written from the perspective of a parent with adult children, who explains this “be fruitful” phrase is not a commandment but a blessing. Children are a gift from God, and choosing not to have children can also be a blessing. God does not call us all to the same end.

Different, but okay
Here’s the gist of our experience: we feel our decision not to have children has been God-ordained, but we also understand that with this blessing comes other work God has asked us to do. This blessing has allowed us the privilege to follow God’s call to places and commitments that would be difficult with children.

None of this is to discount the blessing and extraordinary call to parenthood. I admire my peers who parent so gracefully, who have such lovely children. At times, I feel left behind when I look at them and realize how different our lives would look had we chosen that route. Either way, God would have seen us through. We just look different from most of our peers, and that’s okay.

A conversation about my health

I knew we needed to discuss the 2017 plan for my health again after some disheartening lab results. But I was really dreading it. Why? Because treatment is expensive, and it could undermine our financial plans for this year.

I’ve noticed some unrest on social media about pending healthcare changes in the U.S. I want to say only this: the conversation changes when you are diagnosed with a chronic illness. Not just the political conversation but family conversation. Money conversation. Employment conversation.

When you’re sick, you live in a world where hardly anyone understands you and your condition, not everyone wants to hire you, and no one wants to insure you. So when you’re an atypical patient like me, it makes the conversation even more difficult. My condition isn’t emergent, so we find ourselves asking, where are the boundaries of treatment? What do I really need? What can we afford to do? And how often?

When your healthcare isn’t superb – mine is probably mediocre at best – you stop talking about getting better and start talking about what’s absolutely necessary. I can’t imagine not having a job with decent benefits. My husband and I are probably two of the hardest people to insure: a pilot and someone with a dangerous blood disorder.

I have become numb to the healthcare conversation, but it used to feel emotionally charged. Sometimes I can muster up energy for it, but truth be told, I need that energy for my health, for conversations with my medical team, for conversations about paying our bills. That’s why we need people on the other side of the fence – people who are well and who care about us – to stand up for us. We’re already fighting a fight, some of us for our lives. Among all of the other things you care about fervently, please consider us, too. When you make decisions about our politicians, when you help choose a healthcare plan for your company, when you join the healthcare conversation, think of us.

We had the conversation, although reluctantly. To be perfectly and painfully honest, my health is already altering our lives without considering how expensive it is. I don’t want to be afraid to talk about treatment options because of their cost. Bills shouldn’t be scarier than treatments.

And listen – before you tell me about all the “helpful” options out there – I know about payment plans and support groups and double checking hospital bills. But none of that alone will change the conversation. We have to change the healthcare conversation about chronic illness. We have to advocate.

“Words kill, words give life;
they’re either poison or fruit—you choose.” Proverbs 18:21 (MSG)

 

 

A year on prednisone: what the cyberbullies don’t know

I’ve been trying for a week to reconcile an online stranger’s argument that physical symptoms have spiritual causes. And not just any physical symptoms – he’s saying that anger and irritability from steroid treatments are only spiritual issues, completely unrelated to the drugs.

His view is understandable. It would be easier, in my opinion, to resolve a spiritual issue than to fix a problem with the body. You don’t need a Ph.D. to transform your mind. But living like that – believing the physical struggles of others are all caused by the “evil” inside them – that outlook has no room for grace. Or science.

I’m a week away from being on prednisone for a year, and I know you simply cannot speak about the side effects of this drug until you’ve taken it. And I don’t mean you took it for a few days when you had a poison ivy rash. I mean months of this, sometimes years. There’s a reason people call it Satan’s candy. You can read about the side effects online, but those lists don’t adequately capture the experience.

Imagine you’re already a self-conscious person, a perfectionist, a worrier. So let’s give you a drug that not only makes you feel anxious about everything, but now you don’t even look like yourself. Your face is twice its size and you feel like a balloon about to pop all day every day.

I can only equate it to the fat kid eating chocolate cake in the movie Matilda. Imagine being that kid all day every day. Always hungry, always eating, feeling like you’re about to bust the button off of your pants, sweating constantly. When you lie down to try and get some relief, your heart starts racing. Somehow you’re both exhausted and tingling with nervous energy. And that nauseous-anxious feeling you get before you’re about to speak to a crowd of people? You have that all the time.

Imagine what that does to your mind. That’s just a small peek into the side effects I experience on prednisone. It doesn’t even address the more concerning ones, such as feeling like I don’t have a conscience. (Don’t worry – that was only on the higher dose.)

So, dear stranger on the internet, please stop trying to be a theologian. Instead, be someone’s friend. Be understanding. Be gracious. People are not as evil as you think.

A brief health update, since it has been a few weeks since I’ve given one of those:

After a failed attempt to wean off the prednisone in January, things stalled. My platelet counts fell from their very optimistic numbers and haven’t come back up. At this point, they really need to go one way or another. I’m praying my body will decide soon. I had another appointment with my hematologist, and we discussed some other possibilities for treatment, none of which can be explored until at least July for a number of reasons. The next month is going to be very busy for us. I’ve blocked off every bit of free time I can get for myself so I can try to stay healthy. You do what you have to do.

A Closing of Eyes

When I got out of the shower a few minutes ago, Ernie, my cattle dog, was lying on the rug outside the tub. I can’t be sure, but he seems to feel the sudden emptiness that has come to our house. It’s different from a dog being adopted—that has happened many times before. He must have known those last few weeks what was inevitably coming.

Somewhere in the final weeks, it seems like we closed our eyes to the sacredness of life – of a beating heart or a new shoot on my spider plant. Even the bamboo grew frustrated and developed a brown leaf, and I felt nothing.

I had lost the urgency of my job as a foster parent, forgotten my duty to protect and fight for this long-time four-legged resident of our home. In between the 2 AM vomiting and the labor-intensive trips outside to potty, the sacredness had dissolved into a schedule of hospice care, which I hadn’t yet acknowledged.

Knowing what I know now, it’s hard to reconcile how we spent Duey’s last weeks. His suffering was more than I could see or understand. That’s the hardest part – knowing the little life he had at the end seemed to swallow him up, that his brightest moments came in sliced deli turkey and bits of chicken sausage.

When I assess Duey’s short time with us, I’m almost equally torn between seeing a spoiled, well-loved beagle and one who had to suffer a foster mother who couldn’t see the full extent of his struggle. Maybe I couldn’t have changed anything. Maybe even if he could’ve told me how he felt, I still would have been powerless to change it.

When humans suffer, most of the time, we tell each other. Sickness stands in the way of our lives, and we seek care. After Duey came to us, he broke a tooth. It’s hard to say if that was the beginning of his spiral downward or if that little incident gave him a few extra months with us. He endured an extensive dental, ultrasounds, a splenectomy, bloodwork, and x-rays. After all that we shipped him off to endure without us, he still beagle-smiled every time he came home to us. His love didn’t waver in the poking and prodding.

I cannot say the same for myself in my year of health challenges.

When I said goodbye to Duey, I stood next to the table and kissed his head, took in the scent of his soft, old beagle fur. I wanted to pray, but all I could think to say was, “Thank you.” So, I did. I thanked God for the gift of Duey, for the easing of his suffering, for the moment. A tear fell on his head, and he pulled away from me. Then he put his head down, closed his eyes, and it was time.

I’ve been struggling to say anything about Duey’s passing this last week. While many have shared in our grief, plenty still seem to find it trivial. More clearly than ever before, I’ve seen how important and different pain is for everyone. That is how it should be. From afar, we look up and acknowledge pain that is different but equally as important as our own.

Please don’t be afraid of fostering in any capacity because of our experience. Duey, hospice dog or not, still needed a place to go. Instead of sitting alone in an empty house the rest of his days or being scooped up by animal control, he slept on the bed of his choosing, ate marshmallows and leftover bacon, and shared sympathies with my grandparents over his bad hips.

As conflicted and tender as my heart is, Duey’s life was six months of as much happiness as we could give him.

Duey, you are so sorely missed.

Duke (AKA “Duey” or “Bo Duke”)
September 17, 2006 – February 18, 2017

duey

Hands open (Hair falling out)

My husband and I have been talking for a few months about giving and receiving with open hands—that is, with all parts of our lives, not just our money. For me, this has been a lifelong requirement. A series of trials has ingrained in me a mentality of gratitude, but I’m afraid it might also be mixed with – and sometimes overpowered by – fear.

I hope I have lived the past year of my life with hands open. But you have to understand—when you live your life with open hands, you show willingness to receive whatever God decides to give you. It may not always look like a gift. My diagnosis certainly didn’t always feel like a gift this year.

Living with open hands isn’t lying to yourself, forcing yourself to feel like you’re happy about the gifts you have. At least, that’s not my experience. Living with open hands is a posture and a transformation of the mind. It doesn’t stop you from feeling angry or betrayed or afraid. Instead, gratitude helps you recognize what you’re feeling and act accordingly. It helps you see you already have exactly what you need.

(I’m not theologian or a psychologist. I’m just someone who has lived a year with a gift I didn’t ask for.)

Last week I was feeling a little betrayed by my gift. I was sitting in the waiting room of the cancer center, worried about what my healthcare team would say when I told them my hair was falling out. Because I thought all the side effects of the prednisone had been revealed months ago. I mean, I’ve been on this first-line treatment for eight months now. I should’ve seen the ugliest of the ugly already. So what was this?

But a couple of weeks ago, my hair started falling out. Not in huge handfuls. No, just enough that I started getting worried. I know long-term prednisone can do some damage to your body. I just didn’t expect to have my hair falling out after eight months of treatment. Sure enough, my care team agreed it was probably the drug. Kindly, they cut my dose in half, which spurred the withdrawal symptoms all over again. Of course, it didn’t last long. My counts spiraled and crashed, so I had to return to my old dose.

My platelet counts have actually been higher in the past month—well above my average numbers. So I focused on that, on the gift of my team at the cancer center, on how I have been feeling a bit better and learning more about caring for my body. I focused on some of the good and new things I have planned for the new year. I’ll tell you about that soon.

 

Grace-hoarders and the spoon theory

Part of me has felt a little guilty for writing about my chronic illness. I’ve said it before, but there are scarier, worse illnesses out there.

But I know many of us, no matter what illness we’re dealing with, share the same issue. It’s explained in the world of chronic illness as spoon theory. Here’s how it works: each day, we have a limited number of spoons, and each spoon represents physical energy. Each task in the day requires a certain number of spoons, so they have to be rationed carefully. If you exceed your limit, you borrow from the next day, meaning you have less to give the more you do.

Being both an introvert and an ITP patient, I have only a few spoons for each day. I depend on a quiet, uneventful evening at home in order to recharge for work the next day. My housework, chores, and errands all wait for the weekend. I don’t even cook dinner – my husband is a real winner for doing that every single day.Spoon

While spoon theory is a way to explain my invisible illness, it doesn’t really help people understand what it’s like. For a long time, even I didn’t understand it, especially before I was diagnosed. I figured everyone had the same amount of energy as me, and they simply pushed through the exhaustion.

That was destructive. See, it’s not a mind-over-matter issue. Your brain isn’t impervious to exhaustion. Pretty soon, everything else is going to start collapsing, which is what happened to me. My job was too demanding. My stress was overwhelming. I tried to compensate with exercise – bad advice from friends. I was sick all the time, falling asleep at my desk, unable to do basic tasks at home.

The entire issue existed because I was trying to keep up with people who didn’t understand how I felt. I still have that problem.

I will always have people in my life who think I’m dramatic, attention-seeking, and weak, and they’ll continue to believe that because they don’t think they have enough grace in their lives to share. I call them grace-hoarders.

Grace isn’t exclusively a religious or spiritual word. It means showing mercy or favor, to pardon someone, and if I may add, it means staying. Staying isn’t what comes after grace – it is the grace. Participate in their rest. Give that person one of your spoons. Be present.

Chronic illness in whatever form can be alienating and lonely. I sometimes want to talk about my fears and struggles and hopes, but there is a very solid ceiling on the empathy of others. If this is you, and you’re the patient, here’s what I’ve learned:

  • Your spoons may dictate your day, so you have to accept the new pace. You have to keep a reserve spoon in your pocket in case of emergency. That’s hard to explain and harder to execute, but there will be real emergencies, and you will need to be present.
  • Acknowledge that others may need to live their lives differently, and that may separate you. There’s a reason support groups exist. The deepest kind of emotional support can really only come from personal experience.
  • Find people who can understand what you need. You will find those who can empathize with you from an observer’s point of view, but more importantly, find people who have experienced what you have.

And cry every once in a while. Be vulnerable and open. Not everyone will be okay with that. But they’ll never forget it, and one day they’ll need it.