The Finances

Being sick is expensive. Anyone who has visited a doctor under the current American health care system knows this: Every shot, check-up, and (in some cases) phone call that is tied to your well-being has a price tag. We must budget for insurance premiums, monthly medication, and (sometimes unexpected) medical needs.

And it can be overwhelming.

After paying the fifth installment of our recent barrage of hospital bills, my husband encouraged me to write this post. Not as a way to vent (although, let’s be honest, that is a much-needed conversation) but as a way to connect. Those of us dealing with chronic illness HAVE to think about our finances and I want to applaud your hard work in this difficult area of life.

So I want to share this part of my story; one that I don’t talk about much due to social norms and my desire to stay away from awkward conversations. But one that I think needs to be shared.


“I am so embarrassed,” I whispered to my husband.

He reached out and took my hand. “Don’t be. They understand. They know where our hearts are and how much we love them.”

We pulled away from a party, having just spent the afternoon eating cake and celebrating people we love. What should have been a reenergizing time left me feeling small and insignificant.

The invitation to this event showed up the same week that we got a whopping bill for my most recent Echocardiogram, something we had falsely assumed would be covered by our insurance. We committed to the celebration and decided not the let the unwelcome news of paying for medical tests get in the way of our regularly scheduled life. I pored over our budgetary spreadsheet and found a few places we could cut, one being our happily-named “Gifts!” line-item which was already nearing its monthly limit.

We were not willing to show up to the party empty-handed so we braved the department store crowds to get in on a good sale. We left with something we thought the recipient would enjoy and were pleased to have only gone over our budget by a few dollars. The gift bag was prepped and I felt we had accomplished something miraculous: Being able to give while dealing with medical bills.

At the party, I set our gift down on the pile of presents. It looked small compared to most of the other boxes and bags but I tried to not let that bother me. When it was time to gather around the gift-opener, I was sad to see the same thing we bought being pulled out of another bag, followed by two fancier items hidden underneath. The individual made their way through wrapping paper and bows and, by the time they reached ours, I had an apology crafted. “You can return it!” I wanted to shout, “But the store credit won’t get you much.” They opened the gift bag and laughed, seeing a duplicate item, and thanked us for knowing what they liked.

The party moved on but I did not. I couldn’t shake the feeling that Ben and I were no longer able to give good gifts. Digging deeper I saw the fear taking a truer form:

Our money had to be prioritized for me. Which meant less for others. 

We are walking into a season of giving. This is the time of year where we are expected to give presents to family and friends, to bring food to gatherings, to donate to charities. All these are good and wonderful things. I believe giving is an important part of life, especially in a world with so many needs. We need to help each other.

But how should you give when you are sick? When the prices for your monthly check-ups and medications eat up a portion of your budget? When you don’t have the strength or ability to help serve meals or give your time in other ways? When the donations to a local charity may end up coming back to you?

In what may sound like the ultimate Anti-Holiday slogan, I want you to prioritize your financial wellbeing this year. Even if that means you can’t give as much to others as you would like.

You, who spends hundreds of dollars out-of-pocket for Insulin.

You, who is stuck with unexpected ER bills.

You, who spends hours building and rebuilding your budget.

Set a financial limit for the season and stick with it. Don’t go into debt to buy presents for your family members. Don’t run yourself ragged trying to bake ten dozen cookies for your church choir friends. Don’t give your money to a charity out of guilt.

Your finances can be used for you this season and beyond. Without blame, you can pay your medical bills before you jump on Amazon for Hanukkah presents. (I’m pretty sure any financial planner would tell you that you MUST pay your medical bills first. I’m being generous.) The people in your life understand. Even more, the people in your life want you to be well: Physically, emotionally, financially well.

You are a gift to everyone around you. And you are worth every penny.

The Diet

DIET. The sigh-inducing words at a doctor’s office. Whether there are things to subtract or add to a person’s caloric intake, it is never an easy adjustment.

I am currently on the No-Gluten, Low-Sodium, Low-Cholesterol, Low-Caffeine, Heart-Healthy Diet. (Or what I call the “I Think I Can Eat Those Carrot Sticks” Diet.) I also have to measure my liquids to make sure I don’t add to my existing fluid build-up. Eating and drinking has gone from a normal routine to a label-reading, ingredient-measuring, time-consuming event. And it sucks.

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Because no chronic illness (which I believe includes food allergies/intolerances) is the same, I am not going to share recipes or give specific menu advice here. We live in the glorious age of Pinterest, Google searches, and Youtube videos which supply a never-ending list of recipes in specific parameters. If you are someone trying and modifying different cooking techniques and sharing them with people like me; THANK YOU!

Instead, lets talk about the aspects of being on a diet that medical professionals can’t take much time to train their patients in:

How to engage with the people around you regarding your dietary needs!

[Insert photo of patient having an enthusiastic conversation with friends about why they can’t attend a birthday party at name of restaurant here]

Let me first fully confess that I am a nervous person when it comes to asking to have things go my way. I am a middle child and a peacemaker by nature so I feel physically ill when I raise my hand to nix someone’s idea. It is the reason why my boyfriend-now-husband took me to a teppan-yaki grill on our third date and I told him halfway through the food preparation that I wasn’t sure I could eat anything being offered. (I’m so thankful he decided to marry me in spite of this unhelpful habit.)

I am learning how to change these timid parts of my character. Because those of us living with serious dietary needs are required to speak up for our bodies.

Here are some things I have learned about being my own dietary advocate:

  1. Your family and friends need to know your diet.
    These are the people in your corner, your biggest supporters. They want you to thrive and a huge part of that is taking care of your body. Take time to spell out what you can and cannot have in your diet and ask them to help you eat well when you are with them. Have them keep you accountable and answer any questions they have about dishes they want to share. Remember what you are talking about includes daily meals with your household, holiday parties, as well as snack-filled gatherings for Game Day. Volunteer to bring a dish or, when necessary, create your own plate before the gathering. If Uncle Louie gets mad after you explained that you can’t eat his Thanksgiving Gumbo that he worked so hard on, that is not a matter of food and will require further discussion I won’t address here.
  2. It is okay to skip the church potluck, birthday luncheon, charity dinner, etc.
    If there is nothing you can eat you don’t have to be there. Period. This is especially true for people dealing with severe food allergies or restrictions that could cause you immediate bodily harm. Don’t risk your health to be part of the experience. Send a gift to the birthday girl or make your donation online. If you have already talked to these people (see #1) then there is nothing else you need to say.
  3. Don’t be afraid to speak to a manager.
    As a white woman in her thirties this is the scariest advice to act on–I know my privilege and don’t ever want to cause harm by demanding services or acting as if I deserve anything special. I don’t. While we should all be kind and patient with a restaurant’s team (Seriously, be good to people serving you) those of us with special requests need to be EXTRA courteous. The best way to ensure you can eat something from the kitchen is to speak to the person in charge, either a manager or head of the kitchen, and lay out your requests in a helpful manner. Especially those dealing with food allergies know that they cannot always guarantee a safe plate. If that is the case, thank them and drink your water. Most of the time they can create something delicious and filling with a few modifications.
  4. It is helpful to write down and rehearse your “Dietary Monologue”.
    Your wellbeing is important and you need to know precisely what you can and cannot consume. If you have a long list (like me) or some specific allergies (like my husband who cannot eat arugula) put them in your phone or write a note for your wallet. Because communicating your diet is a vital part of your progress, take time to say your restrictions out loud at home. Ask your family questions about the ingredients used in their casserole. Then when you are in a crowd or talking to someone you don’t know it sounds more familiar and helps you remember your list of needs.
  5. Find foods you really enjoy.
    Know your palette and pin down favorites. If you find a recipe you really like add it to the menu more often. Ask for the same meal whenever you visit a particular restaurant. Having restrictions does not mean you are limited in taste; it just means deciphering which foods are helpful and those that are not.

You’ll notice that I did not add “Cheat once in a while” to this list. Personally, I have found lots of reasons to cheat: when I am on vacation, when someone is visiting, when it is Friday, etc. In the long run it is not worth it. Heck, sometimes even in the short run it is not worth it! (Who wants to spend their afternoon on the toilet?!) It is much easier to stick with your diet and make healthy choices when you don’t give yourself other options. Don’t let others talk you into pushing past your guidelines. Instead find pride in keeping with your plan. It will make you (and your doctors) healthy and happy.

Be encouraged and know that you are important, your diet is important, and people want you to be well. May your conversations be helpful and your community understanding of your dietary needs.

Bon appétit.

 

The Initial Shock

My 25-year-old frame that had days before hiked mountains with a well-traveled twenty-five-pound pack now slouched under the weight of bad news.

Doctor S. heaved a sigh and let his eyes wander back to the test results attached to his clipboard. I looked so different from his other patients; a young, single, summer backpacking guide was a rare sight in a cardiologist’s office.

Yet here we both sat.

“Your heart,” he said lifting up the sonogram for both of us to examine, “is enlarged. Your heartbeat is irregular—we can tell that just feeling your pulse. Your heart is only functioning at fifty percent. And I believe it is getting worse.”

I had not realized this was going to be a serious conversation, otherwise I would have worn something more formal than yoga pants. I stared at my chipped red fingernails wishing my parents lived nearby. They would know what to say next.

“What am I supposed to do?”

“Well,” he looked down at the clipboard again, “I am not going to allow you to go back out on the trail this summer. You will need to inform your boss that you cannot work right now. We can start talking about short-term disability so you can still have an income and leave room for rest and doctor’s visits. There are options for medication, the possibility of surgery, wah wah wah wah wah.”

The Charlie Brown voice always took over when my brain slowed down.

He stood up and walked over to me. “I’m so sorry Mrs. Baird.” (My chart still had the wrong marital status. Was it the right time to ask him to change it?)  “We are going to get to the bottom of this. The medicine I prescribed will help strengthen your heart, proper rest will relieve any added stress, and we as your medical team are going to figure out what is causing this.”

The lump in my throat blocked any chance of a reply. He gave me a quick side-hug, something I’m sure most cardiologists avoid, and looked me in the eyes. “It really is going to be ok.”

 

This is a blog for people with stories like mine.

 

There is not a plethora of helpful resources for young people living with chronic illness. Most of the books, blogs, and advice you can find are made for silver-haired patients who are concerned with finishing life well. But what about those of us who feel like life is just getting started? Those of us who are making plans and have big dreams? We who wonder if we can afford to get sick, if illness will prevent us from getting married or having kids, if slowly dying means we can’t live to our full potential?

This blog is not meant to give medical advice. I am not a doctor* and will always refer people back to their trained team of professionals.

*Side note: During my semester working at a health clinic in Nigeria I was asked to sign off on some documents as Dr. Caitlin Baird. If you have seen those papers and were led to believe that I am a medical professional, I am sorry I led you astray.

This blog is instead about sharing stories and giving advice, hearing from other twenty and thirty-somethings who are asking the same questions. My story includes heart failure but my experiences with doctor visits, emergency surgeries, and making difficult decisions is not unique to heart patients.

So please join me. Whether you are a patient like me or someone who cares about a person like me, I hope this can be a useful resource for all of us.

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Cheers to the young, sexy, and sick. We make this look good.