How I Came to Love the Limits of My Rare Disease

The more you try to avoid suffering, the more you suffer...

I know I’m safer inside, tucked away behind the drapes and in the shadows. My head understands when I venture outside I am vulnerable…that the sun itself is my nemesis. My body clearly protests even a single moment spent in the sun and heat. And though my heart doesn’t want to believe, it’s undeniable: I am “allergic” to the sun.

The specifics of my rare illness don’t matter too much, but if you must know, look up mast cell disease. It’s like being allergic to the world (to sun, to heat, to cold, to smells, to food, to stress, to the environment) without having a true allergy. My body decides without warning, or sometimes without even provocation, to dump the contents of my mast cells. I describe it as feeling like your own body is poisoning you from the inside out. In our rare illness group, we call these mast cell attacks. And the scary part is with every attack I risk life-threatening anaphylaxis.

So I stay out of the sun.

Everyone who lives with chronic illness or rare disease must face limitations. We face the loss of what our lives used to be (or could have been), and we rearrange our lives because of illness until we find a new version of normal. Whether we are dragged along this path of limits kicking and screaming or we step methodically and peacefully onto it is up to us. You and I get to decide how we want to deal with the limits imposed by our chronic illnesses.

Personally, I take a lot of medication to be able to function, and I’m very grateful I have a few somewhat helpful treatment options. But the very best treatment for my rare disease, is to avoid having my mast cells set off; I must cut out ANYTHING that could cause an attack. I must impose strict limits on my life.

At first imposing limits was loss. I had to give up so much in service of an illness I didn’t choose. And when a new symptom claims yet another piece of normal, it is still loss. And loss causes me pain.

Yet, staying out of the sun makes more sense. A highly specific diet makes me feel better. A warmer climate causes me less pain. Temperature control (i.e. air-conditioning) offers relief. My choices to limit my life bring me more: more freedom and more health, not less.

That’s how I came to love the limits of my rare disease; I discovered limits CAN offer freedom. Instead of fighting to maintain my life exactly the way it was and finding myself worse for the battle, my power is restored when I make choices that increase my well-being.

Do I fight for some things? YES! I fight to attend graduations, move my kid into college, volunteer at my favorite leadership conference, to stay working and some nights to just sit up at the dinner table with the family when my body is begging to lie down. Those are the hills I die on today.

Yet peacefully choosing limits can be more liberating than fighting hard any day, for the war with chronic illness will be won through wise choices and acts, not simply brute force and wishful thinking. What I’ve given up in limiting my everyday life is nothing compared with what I have gained from the freedom to stay a tiny bit healthier.

The sun, as it peeks through the clouds or bounces off the lake, is still amazing. I just choose to enjoy it from the safety of my bedroom window.

Four Ways to Create Your Own Best Chronic Illness Life

My goal is to create a life I don't need a vacation from.

I’m still learning about living life with a chronic illness. I’ve been sick all my life, but it’s not like a person can master how to live gracefully and courageously when they’re fighting with a body that doesn’t seem to want to take orders. I don’t have it all figured out, but every day I work hard to become uncommonly brave: to live my life under my terms with a sophisticated peace that conveys I am the author of my own experience.

Want to create your own best chronic illness life? Where do you even start? Here are a few thoughts to get you going:

  1. Your nest. Think about your home, your bedroom or the place you spend the most time when you’re feeling ill or having a bad day. This is a great place to begin. What would help you feel more comfortable here? Do you need extra pillows, a special chair or a bedside reading nook to create a space that feels warm and inviting? Or do you need a desk where you can be productive for a few minutes at a time? Make plans to redesign your space to make it work for you and your unique needs and desires.
  2. Your free time. Think about what you tend to do with your free time. Maybe you already take long walks on the beach or in the woods. Maybe you love window shopping or crafting gifts for others. Whatever it is that fills you up, do more of this! When we’re sick, we tend to stop doing the very activities that might distract us from our illness and bring us internal strength. If you’ve stopped doing these things, start today. Even a few minutes of soul-filling activity is worth it! And if you need help, ask for it. Maybe you can’t walk through the woods, but you could use a nice drive to a park. Make it happen today.
  3. Your work time. Think about how you spend your hours contributing to the family income. If you don’t work outside the home, think about the activities you do inside the home. We all spend a lot of time at our workplace or working at home. Do what you can to bring life and joy to this situation! Pin up pictures of things you care about in a work locker or in your cubicle. Add color to  your office or computer area. Find a few favorite restaurants that deliver. Block out time to have lunch with a friend. Start simple, but make this area and the time you spend in it something you look forward to. Sometimes even the simplest things can make a huge difference.
  4. Your life. Think big! Do the suggestions above seem too small? Then think bigger. Maybe you don’t need a few minor improvements to create a life you love. Maybe you need radical change. Of course, I’m not advocating you make reckless changes to your life (like quitting your job without another income or moving to a place you have no support system developed). But if you’re really feeling like your life has become unbearable, it might be time for a major adjustment. Maybe it’s time to gather a few friends, share your dreams and talk about how you might achieve your goals, despite your illness. It’s never to late to start again.

Life is just plain difficult when you’re living with a chronic illness, chronic pain or undiagnosed illness. But though your body might rebel, you still have the ability to affect positive change in your life. Why not start now?

The Value of a Moment

The Value of a Moment

Having a chronic illness can sometimes take your breath away. Literally. So it’s hard to remember that life is life is happening all around you while you’re busy struggling for air.

Whether you’re reading that figuratively or literally, when you have a chronic illness or chronic pain it’s important to remember to stop and notice the moments. Good days happen. Bad days happen. And both are chock full of moments that matter.

Here are a few of my moments that mattered this week:

  • My prayers for an appointment change for the doctor were answered!
  • My daughter submitted her college application and the art portfolio she’s been working hard at all year.
  • My AHDH son had a great victory at school.
  • We’re set to have family time tomorrow morning, and it looks like all is well. (Sometimes illness interrupts this, so fingers crossed and prayers said!)
  • I was able to accomplish what I needed to at work prepping to be away for a bit while I recover from surgery.

All in all, it was a good week. And it would be super easy to skip right through all the moments that make up life. But let’s not do that. Take time to launch some mini-celebrations. Why not have a brownie or glass of lemonade to celebrate?

In my list, I didn’t include a few other important moments that aren’t exactly celebrations. Like a high school friend lost her husband unexpectedly this week. And we discovered a hidden problem that needs attention. Those moments matter too. They demand a response.

Stop and notice. Respond with your whole self. Just because you’re sick or in pain doesn’t mean you cannot fully participate in life! Celebrate fully. Respond gently. And notice the moments life creates!

Tips for the Newly Diagnosed (Thank You to the Ronald McDonald House)

Thank You Ronald McDonald House of Rochester, MN

Tonight marks the end of our 10th trip and the 102nd night our family has spent at the Ronald McDonald House in Rochester, MN during the last six and a half years. As I sit in one of the common areas and type, I cannot help but think of all the families we have met here over the years: some with children who were struggling to stay alive and some with children like ours who are struggling with how to live.

When you’re not a member of the illness club, or a parent who cares for a sick child, you don’t realize what it’s like to live life differently. Back home, people see me as a leader, friend and even a confidant. But most will never see the other roles I play because three people in our family are sick: patient, caregiver, pharmacy tech (you should see our cupboard), part-time insurance and billing coordinator and pseudo-nurse. But as I have explored the halls here at the Ronald McDonald House and at the Mayo Clinic where we receive treatment, almost everyone I see understands these roles all to well…or they will soon.

So tonight, I was thinking…what would I say to a parent or patient who was just starting down the road of difficult illness? (Because there’s not nearly enough information out there for the newly diagnosed!) Here’s what I came up with:

1. Be Patient

Life slows down when you’ve received a diagnosis. And, MOST medical care is not emergent. Unless you need the ER or emergency treatment, everything will take more time than you like. When you’ve received a difficult acute or chronic diagnosis, take a breath. Yes, the patient feels terrible, and it’s devastating to try to take it slow when you see those you love in pain or dealing with illness. But the medical professionals have reasonable reasons for taking it slow. It really is better to change one thing at a time…so you know what’s helping and what’s not. So try hard to take a deep breath and give each treatment or change time to start working.

2. Be Persistent

A diagnosis means YOU have just become responsible to understand and advocate for yourself or your child’s illness. I wish all families new to illness would instantly know what to do in every situation, but it’s not that easy. You will likely need to do some research, make sure you’re seeing the best experts available to you, and learn how to listen to and communicate with doctors and medical professionals. Without stating it too strongly, it is your responsibility to learn everything you can about this illness and understand any treatment plans. Doctors are experts in medical management, but parents and patients are experts in their own and their children’s needs. Speak up when you need to, and be an advocate for yourself or your child.

3. Be Perceptive

Along with illness comes emotion. We all have feelings. Caring for difficult physical needs is not emotionally easy. In fact, it can be downright hard to recognize and accept the “new normal” you’re encountering. Whether this new normal involves living in a hospital, dealing with daily symptoms, medications or treatments, or simply coming to terms with newfound boundaries, our emotions are intimately involved in living well with illness. Be perceptive of your own needs and the needs of your loved ones. Children and adults alike can have some very profound thoughts and questions as they work to understand and cope with illness. Keep talking and exploring, even if you don’t have all the answers.

4. Be Present

Life doesn’t end with a diagnosis. (Even if it seems that way right now.) Ill people and their families have a ton to deal with, but normal things, even fun things, still occur in their lives. Making dinner still needs to happen, even if it’s a call for pizza delivery. Washing clothes is still important. And even doing homework can be a priority. Interestingly, ill people have a great deal of time on their hands…typically spent feeling sick or in pain. But they also wait a lot: for treatments, for doctors, or for answers. Plan ahead now to use this time well. Try not to spend it feeling sorry for yourself or your loved one. Instead, be present with them. Use it to do something fun, or at least distracting. And make the most of each minute. Ill people are still living…so LIVE!

Surely there is much more information and there are many more practical tips to help those dealing with new diagnosis, but those four thoughts are a great starting place. And if I added a fifth tip, it would be this: be open to help. I love coming to the Ronald McDonald House, and for sure, it’s not because I love illness. I love coming here, because I am surrounded by families who “get it” and served by strangers, and after ten visits now, even a few people I can call friends. They cannot make my children or me better, but they do what they can to make everything around me just a little bit easier and even a little bit more fun.

Today I was brave. I got out of bed.

Today I was brave! I got out of bed.

Today I looked chronic illness in the face. Today I was brave. I got out of bed.

So…it’s been a long week. For the last several years, I’ve had the opportunity to volunteer behind the scenes at a national leadership conference called the Global Leadership Summit as the assistant video director. I love what I get to do! I call cues for the camera operators and the director to ensure the presentation is as seamless as possible. Fast-paced, high-pressure environment. It’s one part planning, one part strategic thinking and one part leadership.  It kinda comes naturally to me.

But…to volunteer, I must travel by airplane, sleep away from home, figure out what foods are safe to eat while traveling and, because the satellite truck must keep the equipment quite cold, I must endure some very cold temperatures. That’s hard on the body when you’ve got a chronic illness. It’s a definite sacrifice.

And…after I got home late, I went right back to work the next day (Sunday), and my kids had their first day of school today (Monday). 5:45 AM. That was the time my alarm went off. That’s a TERRIBLE time for the alarm to go off when you’ve got a chronic illness. But dad is traveling, so I gotta do what I gotta do. Thank goodness for grandma and grandpa pitching in (thanks mom and dad)! The kids survived their first day back at school, and we’re all wrapping up for the night.

Some things are hard. Like getting out of bed. But they’re ultimately worth it. Do I feel great? NO! But am I infinitely glad I made the choices I did. YES! I don’t know what you’re facing today. Maybe there is absolutely no way you could dream of doing what I’ve done this past week. Maybe you could do more. It doesn’t matter. Because the truth is ultimately the same: Sometimes we must choose to feel sick, so we can experience a joy greater than our illness.

Today, I was brave. I got out of bed.

It was well worth it.

Difficult Days Happen…When You Have a Chronic Illness

Difficult days happen with chronic illness

If you don’t have a chronic illness, if you’re not the one with a rare disease, if you don’t have an invisible illness, then you likely won’t relate to what I’m about to say. But I hope you’ll listen. I want to tell you that when you have a chronic illness…difficult days happen.

People with chronic illness might be jumping and running, laughing and playing one day. Then the next be at home in bed feeling like they got run over by a truck. Your child might feel fine one minute, and the next be struggling with an incredible amount of pain. Your friend, who was perky when she arrived at your party, might feel like the world is spinning by the time she leaves. Or your wife might be fine one week, but really struggle to contribute in any way to the household the next. That’s because…

Difficult days happen!

No one in the chronic illness community wants to experience a difficult day. Yet, we all know these days are destined to come. Why do they hit? Maybe because we overdid it the night before. Maybe because the seasons are changing. Maybe because the man who lives down the street has a hangnail today. (Okay, that’s not a real reason…but you get the idea.) Occasionally difficult days happen because we chose to use our energy on something that was really important to us the night before. Sometimes they happen because our environment is out of whack. Other times, who knows why they happen? But they do.

As someone with a chronic illness, I would like people around me to understand that I want to be cautious with my energy on the good days (to make sure I keep a reserve), and at the same time I want to have a good time. And I want them to know that I need a bit more space and compassion on the bad days, because on those days I’m working extra hard to just maintain.

During my healthcare journey, I attended a program for people with chronic pain and illness in which we were encouraged to have a difficult day plan. We could put this plan in writing or make it a verbal agreement with the family. But the plan needed to include the things we would continue to do, start to do or stop doing when the times were difficult. For some, exercising (maybe at a lower intensity) is still important on a difficult day. For others stopping all activity is what needs to happen. Some people need to watch a funny television show or movie to get the endorphins going. Others need to have time to meditate or stretch. We each just need to know (or explore) what works for us.

If you’re trying to support someone with a chronic illness, find out what works the best for them. Then you know how to help (even without being asked) when the day is hard. And if you’re someone with a chronic illness, make a difficult day plan. Choose ahead of time what you think will help distract you from the pain and illness. And choose two or three healthy activities you could participate in to help you recover some strength. (Me…for the really bad days, I have a few television shows I wait to watch on Netflix so I can do an occasional difficult-day-marathon. And I try to get up, get showered and do as many normal things as I possibly can. I also use these days to pray and meditate.) Each plan will look as varied as the individual…but it helps to have it in mind. That way when the difficult days come, you have already decided how you’re going to react.

Difficult days happen. What’s your plan?


5 Ways You Can Still Make A Difference When You Need to Lie Low

5 Ways You Can Still Make A Difference

Sometimes I feel useless when my chronic illness flares up. Most people that know me would be partly surprised with this statement. But then if they stopped to think about how activistic I can be, they’d see the frustration in needing to stop and rest…to do less.

To be clear, I do NOT like doing less. I would rather do more. I’d rather go, go, go. Not stop, slow down or rest.

I’ve heard from quite a few people who live with chronic illness that they feel the same way. As their productivity goes down, their frustration goes up. And an impatience to just feel better sets in. But alas, chronic illness has a way of telling your body that rest is a priority. And too, importantly, I’ve learned if I rest when my body asks for it, I recover my strength so much faster!

So, I do. I stop. I slow down. I rest. And then I feel…well, useless.

After participating in this cycle for far too long, I decided to make a list. Ever heard of the idea of a “bucket list?” The term that became popularized through the cinema represents a list of those things you’d like to do someday…before you “kick the bucket.” I’m still working on my life bucket list. But I’ve got my bedside bucket list further along.

Sometimes when I’m feeling bad, I’m too sick to check anything off my bedside bucket list. But other days, I spend that forced time in bed or at home to make a difference. I can always send up a prayer. And I can encourage people on Facebook or via email. I can spend time with my kids, or watch a movie with my husband. I can even check the family finances or research something I’m interested in.

I’m sure you’ve got many ways of dealing with your forced down time. What are your favorites? What’s on your chronic illness bedside bucket list?


3 Reasons I Embrace My Struggle with Chronic Illness

Embrace the Struggle with Chronic Illness

A few of you who have chronic illness are shrieking inside at this moment…”how could you ever suggest I embrace my struggle?” Then you might add, “You have no idea what my life is like…what I’m going through.” And on that point, you would be right. I don’t fully understand your reality.

But here’s what I do understand about chronic illness. I know the kind of pain that makes you feel like you absolutely do not or cannot think of moving. I know what it’s like to have parts of your body move without your control. I understand what it’s like to watch your child struggle for breath or writhe in pain. I know what it’s like to get extremely ill in a matter of minutes in a highly unpredictable way. I know what it’s like to have doctors say it’s all in your head. I understand what it feels like to be afraid of what each day or moment could bring. And I know what it’s like to have a loved one with mental illness in the family. I don’t know your particular struggle. But I know that even though the details are different, our journeys likely look much the same – we have some form of struggle.

Daily I read Facebook posts from people who have questions about their illness, who are sick and tired of being sick and tired and who are sometimes doing everything in their power to escape the hold illness has on them. Of course, for anyone who has an illness that is truly curable, these thoughts are not for you. The thoughts that follow are for those of us whose illness has no cure and will not go away. I write this for those who are dying to escape their illness and who push against it so hard that they’re declining instead of improving.

Here are three reasons why I choose to embrace my struggle with chronic illness:

  1. I can spend my time feeling sorry for myself OR I can spend my time feeling joyful for the good in my life. It’s really easy to feel sorry for yourself. I have moments when I feel alone and incredibly sad about this darn illness. Sometimes, it’s even the illness speaking, as chemistry wages war inside my body. When those moments come, I breathe deeply and remember that things do not always look so bleak. (If you are someone who has not just moments of sadness, but days and weeks without end…please, please go see a doctor or therapist. There is a better day.) But aside from those moment of distress, daily I choose to look up and find the good in my circumstances or relationships. And even when money has been tight or when I’m in an illness flare, I can be thankful. Even when I can’t make sense of my medical bills or I have to stay home from a special event at work because I’m not okay, I can find happiness. It is possible to CHOOSE an attitude of joy…and the feelings will follow.
  2. I can spend my life wishing for what I don’t have OR I can spend my life living out of the abundance I do have. Every time I watch my family leave for an evening of entertainment without me because I am sick that night, I have a choice to make. I can wish my life were different, or I can spent my time enjoying what I do have. Sure, it’s difficult to miss out on things. That’s real. But when my family leaves and I am alone, would it help my illness more to spend the night crying or to spend it laughing at a bad movie? I choose laughter. I choose to appreciate what I do have. A great puzzle on my phone. Or a Facebook session. What do you do when you’re confined to your house or bed? You can make a choice that promotes personal health and live a life appreciating abundance.
  3. I can spend my energy frantically seeking a way out OR I can spend my energy peacefully creating a way through. This one is the clincher. And to be clear, I am absolutely in favor of personal health research, self-advocating for the best care, and periods of trial and error with appropriate treatments. But each of us has a choice when we face illness. We can choose to act as if life is squishing us like a bug…and we need to struggle with all our might against a force much larger than us. Or we can choose to act as if life is gently holding us…and we must only find the rhythm with which we need to move. One picture leaves you exhausted, anxious and afraid. The other leaves you searching, moving and resting. I choose the latter. I choose to work hard to find the best way forward AND rest hard in the knowledge that choosing peace and acceptance of my personal limits actually offers me freedom. It makes me strong!

That’s why I embrace my struggle with chronic illness. Because if I don’t, it will always get the better of me. But if I do…I am the one in charge. I am the one who is strong.

There is No Magic Pill That Will Cure My Chronic Illness

There is No Magic Pill That Will Cure Me of Chronic Illness

This is a post for the newly diagnosed. The ones who have just realized there is no magic pill that will cure their chronic illness. Those who have suddenly and sometimes frighteningly hit a health wall they never wanted to run into. Some of us have been sick for years, trying to find answers. And some have suddenly become ill or injured, when they had lived an-until-now healthy life. No matter what end of the spectrum you fall on, receiving a medical diagnosis is kind of a big deal.

A medical diagnosis means everything changes. You must reoriented your life around an illness. Every day you live life with the moment-by-moment knowledge that all is not well inside your body. How you get up in the morning, how you go to work (or don’t), how you eat, how you take care of your home…everything changes. And when you’re first diagnosed, it can be a scary time. Just the label chronic illness carries a weighty ring to it. But it also carries a meaning that it’s not going to get better. It will be with you for life.

So if you’re reading this and feeling that all-too-familiar tightness in your chest, strain in your stomach or tears welling up in your eyes, it’s possible that you’re moving through the stages of grief. We all know these stages, whether or not we know them by name. First comes denial (this cannot be right or this cannot be happening to me). Second comes anger (who is to blame?). Then it’s bargaining (If only I had not… or if I could just find the right doctor). Fourth is depression (I need support or I’m so incredibly sad). And last is the stage of acceptance (I can move on and I will still have a good life). Sound familiar?

And by the way, people living with chronic illness or their caretakers don’t move through these stages cleanly once and are done. Sometimes we have to revisit a stage or even go out of order in our personal grieving process. Sometimes we sit in one stage for a really long time. If this is your case and it’s not the stage of acceptance, you might want to look for a counselor who can help you move forward. Each time chronic illness takes a little more of our life, we must revisit the stages of grief.

Today, if you’ve just been diagnosed with a chronic illness, take a moment to breathe. And remember a few things:

  • You’re (or your child is) the same person you (they) were before a phone call or appointment with news changed your life.
  • You will figure this out. Give yourself time to acclimate to your news and to a new way of life.
  • Chronic illness means medical things move slowly. Unless you’re having an emergency, learn to plan and learn to wait. Trying new treatments and seeing new specialists takes time.
  • Chronic illness is not the end. Though it changes how you live your life, it does NOT mean you loose your life. You are allowed to have dreams and pursue them!

It’s true there is no magic pill for those living with chronic, rare or invisible illness. That’s reality. But when you get to a stage of acceptance and learn to stay in that emotional space, you’ll find chronic illness helps you appreciate the most important things in life…while putting the rest in perspective.