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.

 

Shut up – it’s Christmas.

Sometimes, when I was a kid, and even now that I’m an adult, I’d wish to be just a little sick. Only when I was dreading something, and it seemed like the only way out of it was to be irrefutably ill. Because it was never good enough to simply not want to show up. It doesn’t matter what you want—it matters what you ought to be doing.

Some sad, duty-loving part of me wants to hold dearly to this.

Christmas as an adult is like driving through a big snow drift. You know it’s coming. You can see it ahead. It’ll probably be magical, like a big POOF and then you’ll be safe out the other side with a good story to tell. Or you’re me, and you foresee every horrific outcome that pile of snow has to offer. The magic turns into outright panic. You have two choices: brakes or gas.

You could hit the gas, hoping the momentum will break you through safely.

You could slow down, give yourself more time to consider and dread the unknown. But you’ll probably get stuck there, sitting in a cold car alone, wondering what happened.

One way or another, you’re going to hit it. But will it be magical? Or will you be digging yourself out?

There are some people who seemingly spend their entire lives calculating the value of others and finding new ways to assign significance (or insignificance) to them. For them, Christmas is another excuse to assess their friends, family, coworkers, anyone. Their scorecard is invisible. You’ll never know how to get an A in their classes. You won’t even know you’re in the class until you realize your Christmas has become consumed with pleasing them. You didn’t ask for it, but you got a grade.

Better luck next year. Game over. Every year.

I realize the holidays are a time to reconnect. But what if we all just shut up?

Sounds pretty harsh, I know. The truth is, it’s loud enough at Christmas. Just for a day, what if we were quiet, gentle spirits? What if we didn’t think about attendance or food or gifts?

The point is, you might be missing out on the tenderness at the center of it all.

What if we approached Christmas like the wise men and shepherds? Bringing only what we had, coming quietly to honor the end of one era and the beginning of a new one. We’d approach Christmas very differently, I imagine.

Maybe next time I’ll write about how to deal with people who have too many opinions during the holidays.

christmas-tree-2016
The view from where I sit.

Overweight, cranky, and anxious

Back in August, I was feeling pretty defeated. I’d had my third round of IVIg, and I wasn’t feeling any better. Coming down from a high dose of prednisone gave me the worst headaches I’d ever had. My body was so confused–nauseous and hungry, hot and cold. I felt both determined and disappointed, calm and irritated. The treatment was worse than the disease.

We had been a foster home for a hound rescue prior to my diagnosis, but when I realized most of my free time would be devoted to doctor appointments, treatments, and blood work, I shut down all the extra stuff in my life. It was good to do that, even though it was temporary. The extra time let me slow down and process what was happening.

But four months later, I wasn’t feeling it anymore. I was cooked. Done with trying to get better. Done with the medication. Done with treatment. Exhausted.

I needed to make progress somehow. I needed to do something. Somehow I talked my husband into fostering a dog again. What I didn’t tell him was, “Honey, I need to do this. But what that really means is you will do a lot of it. Because I won’t feel well enough to do it.”

And so it was. Duke, now Duey, the elderly foster beagle, came to us in September when we came home from vacation. He was overweight, cranky, and anxious. He had been left behind in a moving situation. We don’t know much more than that. I’m pretty sure he and I were having the same feelings about life. img_20161014_203332424

He settled in. He slept a lot. I slept a lot. We are the perfect match. He is the perfect foster dog. He never has accidents in the house. He never complains about his food. He never chases the cat.

But then Duey broke a tooth. And we had to drive him an hour away for a full dental and mouth surgery. While he was there, the doctor discovered a large mass in his abdomen. Guess who drove two hours after work to get Duey so I could go home and rest?

Duey has been an adventure. He deeply loves my husband, only comes when he calls, and knows all the good food things come from his hands. I am the mean one. The one who gives baths and cuts toenails and withholds people food.

Duey had another surgery this week to remove the mass. We drove three hours to drop him off and guess who had to drive three hours on a weeknight to bring him home? Not me. Who insists on accompanying me to the store? To run errands? To hematology appointments? Who drives me places when the weather is bad? Who goes to events in my stead and explains to others why I’m gone?

It’s not me. It’d be easier if it was, but it’s not. The real exhausted ones here are our caregivers. They put on their strong faces for us. They do the tough stuff for us. We’re just along for the ride. As hard as it is for me to let him do all that he does, the real saint in the story isn’t me. It’s my husband, my caregiver. When Duey and I are feeling overweight, cranky, and anxious, he’s the one who gets out of bed, or drives three hours, or finishes the laundry.

Dear caregivers, mine included, please accept this as my public confession of gratitude. Duey says thanks, too.

Coping when you don’t have answers

Especially when you are a results-driven person. I despise tasks that don’t produce anything when they’re done. Mowing the grass gives me an unusual satisfaction that creative endeavors do not. So having answers or at least a semblance of an explanation is nice.

I haven’t written anything in a couple weeks because I don’t know what to write. It feels like I’m standing in a dead-end alley. Right before Thanksgiving, my clinic called to say I could reduce my labs to twice a month instead of every week. It’s definitely good news to know I’m not seeing a needle every week. But I think we’re cutting back because the tests aren’t giving us any useful information anymore.

I started thinking a few months ago we were beating a dead horse. But when you’re the patient with a diagnosis that almost no one understands, you just go along for the ride. The only person who understands ITP is the person who ordered all of these needles and tests. Yeah, I’ll do what he says.

I started crocheting. I’ve always wanted to, but now it’s been almost a year. And I’m not making any progress. I needed to do something productive, get some results. If I can’t have answers about my blood, at least I can make something useful.

Here’s to making time to learn new things when you don’t know what else to do.

Blessed to be sick

It almost brought me to tears when my husband and I served communion at church yesterday. Such a common thing, really. Our church takes communion once a month. But being on the other side of it, offering something holy to others, that’s an almost scary thing to do.

We are too quick to dismiss the gifts we have, not that they are unholy gifts, but that they’re not worthy of sharing. But gifts and blessings are empty if we hoard them.

I read the beatitudes last night in a fit of insomnia–I’m still fighting that at 4:30 AM right now. To gain some perspective, I read them a little differently (OK, scholars, hang in there).

Luke 6:

Blessed are you who are poor – You’re blessed by the gift of poverty

Blessed are you who hunger – You’re blessed by the gift of scarcity

Blessed are you who weep – You’re blessed by the gift of mourning

Blessed are you when people hate you, exclude you, insult you – You’re blessed by the gift of being an outsider

Receiving the ITP diagnosis earlier this year transformed the way I look at life in the best way possible. I have never felt so much pain and peace, this symbiotic relationship rising up at every wild turn in this journey. Symbiosis means both parties–pain and peace–offer mutual benefit to one another. Pain gives meaning to peace, and peace gives relief to pain.

I am blessed to be sick, because I love people better knowing their suffering. Because I know what it means to be helpless. Because the difficulty has brought healing to other parts of my life. Because the messiness of sickness has unshaded people, relationships, desires, and ventures that I couldn’t see clearly before.

I hope that you do, and that you don’t, find yourself blessed with poverty, scarcity, mourning, and rejection. But if you do, I hope it turns on a light in your life that helps you find direction and firm footing like you’ve never had before.

How to Pack for Infusions

I’ve been thinking about writing this since the first time I had IVIG infusions. As a first timer, I needed advice on what I could and couldn’t bring.

So here it is–what to pack for a day of infusions, especially when you don’t know how long you’ll be there.

packing-list-for-infusions

  • Computer
    They have wifi. Why not use it? You’re going to have plenty of spare time and that needle in your hand or arm is not very comfortable.
  • Reading material (Kindle)
    It doesn’t take up much space and might help you fall asleep for a little bit.
  • Headphones or earbuds
    Because all the beeping and other patients’ daytime TV shows are going to keep you awake.
  • Water and snacks
    They do have water and some snacks there, but it’s better to have your own close by. And make sure the packages are easy to open because IV’s don’t improve dexterity. Also, you might not want to bring junk food. I mean, unless you want your doctor to know how bad your diet truly is.
  • Chargers
    It could be a long, boring day.
  • Chapstick or other basic toiletries
    To make you more comfortable. Just make sure they aren’t super fragrant, because some other patients may be sensitive to strong scents.
  • Comfort items (pillow, sweatshirt, sleep mask, etc.)
    Chances are, if you’re getting infusions similar to mine, they pre-treat you with Benadryl and other fun drugs to minimize chances of a bad reaction. These drugs can make you pretty tired, and you may feel like taking a nap in the infusion chair. They can give you a blanket and pillow, but you may feel more comfortable with your own.

Also, take a shower the morning of infusions. You never know what will happen that day, and you’ll feel better knowing you’re fresh and clean.

So, I may be getting an unplanned infusion tomorrow. My numbers dropped lower than they’ve been in months. Tomorrow’s labs will determine the next step, so tonight I’m packing my bags just in case we decide to do an infusion tomorrow.

Please say a prayer for my nurses and doctors. Ask that they will be able to discern the best course of action tomorrow.