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

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.

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Chronic illness: Learn to be gentle with yourself

In the last few years (meaning many), I have learned to live life at a new pace (meaning slower). And sometimes I even like it.

If you have a chronic illness, a rare disease, or even an undiagnosed illness, you will likely understand what I mean when I say that chronic illness strips away your level of choice. Choices like how you spend your time, where you go and what you eat. My illness is progressive, so each year it seems I can do a little bit less. I have less energy to burn, therefore I must move slower. So one of my highest priorities is to choose how to use the energy I do have well.

But this is harder than it seems. Because it’s not just prioritizing life choices that weighs you down when you have a chronic condition. The emotions involved in being sick can turn ugly. You might get angry with people who provide you with services. You can find yourself out-of-your-mind upset with medical professionals. You can take out your frustrations on your family. But unless you’re accustomed to playing the victim card, the person who typically suffers the most from your raging emotions is you.

Recently I’ve been sick. Coming down with a regular illness (like a cold) on top of being chronically ill just stinks. The illness stays around longer and seems to knock me down harder than it might the “normally healthy” person. So whenever I get a cold, I watch as it slowly turns the corner to bronchitis. And when I have bronchitis, for the first few days, I can do nothing. I lie in bed (propped up of course) and wait. Wait for the days to pass. Wait for the virus to exit my body. Wait for my energy to return. Just wait. And of course this happens whenever I get an illness flare too.

If you’re a caregiver of someone who is chronically ill, think about all that waiting time. For most of us who deal with bouts of illness that confine us to bed, we can have a lot of unproductive time on our hands. And when you feel like you got run over by a fleet of semi-trucks, being unproductive is about all one can manage. Sometimes, we can feel well enough to contribute to the world in small ways from our bed. But often, waiting is what we must do.

And during all this waiting time, our emotions can get a little messed up.

Healthy or ill, each of us have limits. We are not omnipotent. I never have liked the fact that I cannot leap over tall buildings in a single bound. Or that I’m confined to travel by foot or car; flying (like Superman) would be so much more efficient. But I cannot leap over buildings, and I cannot fly. Sometimes I cannot even get out of bed.

In my younger years, I was pretty hard on myself when I would get sick. Endless hours of television aren’t very activistic, and I love action. I used to blame myself, question God and get angry at each and every bad day. Part of this anger was dealing with undiagnosed illness. But part of it was I had no compassion for my own weakness.

Now…I work hard to give myself a break. To be gentle with myself; for I am fighting a hard physical (and therefore emotional) battle. And nowadays, I find my significance in life not in how many times I can pick the children up from school or go grocery shopping or meet a friend, but in the breadth and depth of my own humanity.

My spirit is rich because I no longer fight to rid myself of this illness. Instead, I wait steadfastly…knowing my down time, while not my choice, is what it is. And somehow, once I stopped fighting, I could even enjoy some of those sickbed moments.

Please, be gentle with yourself and your loved ones who have chronic illness. They did not choose to be sick. But in gentleness, they may find peace.

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How to Choose Hope When Chronic Illness Abounds

It would be ludicrous for me to say I understand what you’re going through. When you have a chronic illness or a child with a chronic illness, there is practically no way for anyone to truly understand the depth of your daily distress or the breadth of your pain. You may be walking through some of the most difficult days of your life. You might be finally feeling like you can breathe again. Even though I cannot fully understand…even though I do not know what your circumstances hold…I do know this…hope abounds.

Hope is not a fuzzy feeling. It’s not an illusive mind trick. It’s a real and absolute assurance. It’s an understanding the future holds promise and good.

Not clear yet? Then, consider the opposite of hope: despair. We’re all familiar with despair. It comes in varying forms and levels. It’s the feeling there is no way out, no way forward and no assurance of a better future. It’s the “end of the rope.” Different than depression, despair is a sense that difficulties cannot be repaired and forward momentum is impossible.

I think that’s the core of the issue…to choose hope, we must believe forward momentum is possible. We must believe there is a brighter day. We must know that in the midst of our troubles, we stand on solid ground, and not on sinking sand.

Maybe I recently mentioned that one of my mast cell friends recently said she felt better, calmer after talking with me? I quickly suggested to her this feeling has nothing to do with me being a good, calming person…but everything to do with my relationship with Jesus. For me, this friendship with God is what allows me to always choose hope. Because I know God is always with me, I can claim the promise that He has a good plan for my life AND a HOPE for my future (Jeremiah 29:11). I can choose hope, because I know there is always a way through.

Sound sappy? Maybe it seems that way. But I can attest to the fact that it’s not. While I still struggle with fear, anger, sadness and all manner of distress, one thing I do not struggle with is despair. Despite my pain, despite my illness flairs, despite my ongoing symptoms, I have hope. And this hope is not just the maybe-someday-things-will-get-better kind of hope. It’s the calm assurance that no matter what circumstances seem like at the time, God is capable of helping me handle them.

So how do you choose hope? You find your solid ground. Mine is Jesus. What’s yours?

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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.

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When Chronic Illness Flares into Worry

This weekend I had a chronic illness flare. Most people with mast cell disease call them attacks. And this attack once again introduced worry…

Because of my mast cell disease, I can react to normal everyday stimuli as if I were highly allergic. In fact, some people with mast cell disease describe it as living every day in constant low level of anaphylaxis. One of the more depressing reports I read recently suggested patients like me are “extremely ill” and live close to death’s doorstep. How encouraging. Not.

But even though that statement was from a new story where truth can often be sensationalized, this explanation of mast cell disease holds a kernel of truth. I can get extremely sick, and sometimes I am even worried that things could go really bad when I’m having an attack. For me, attacks can include trouble breathing, chest pain, flushing, headache, internal pain, full body pain and even (warning: TMI) GI distress. Most times it happens in a slow burn…unrelenting symptoms that leave me feeling sick, but able to function. Sometimes though, like this weekend, it happens quickly…extreme symptoms that make me feel like I’m going to explode from the inside out and leave me completely unable to function.

This weekend it was fumes from gym floor lacquer mixed with off-gassing from new carpet. Normal people might be annoyed with these smells. But me…exploding headache, nausea and a feeling like someone drained all the blood from my body (that’s called anaphylaxis – for which I took emergency meds). While I was able to make it home, load up on Benedryl and sleep, it left me unable to function for quite some time.

But what episodes like this also leave behind is something I don’t want to be a party to…WORRY!

People with chronic illness can easily worry. Worry, when they’re feeling good, whether or not they will get worse. Worry, when they’re feeling bad, whether or not they’ll ever feel good again. Worry they will not be able to participate in their family. Worry they will loose their job or their source of income. Worry their friends will not understand. Worry their family won’t either. Worry they will die.

Interesting thing is that worry does no earthly good! As Corrie ten Boom says, “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” Worry (which is a form of fear) doesn’t do me any good. It doesn’t make me feel well. It cannot save relationships with my friends or family. It cannot supply for my financial needs. Worry can only cause all these things to become more difficult.

So worry needs to be kicked to the curb.

Yesterday I was talking to a friend who also has mast cell disease. She mentioned that she felt better after talking to me…that I had a calming presence. My response: that’s Jesus in me. Left to my own devices, I would be a complete worry wart. Because of God, I can take all my fear and worry about my illness, or anything else in my life, and give it to God. The Bible says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God” (Philippians 4:6). That’s the cure for worry: let God handle it. I don’t need to carry around a weight of worry. God is big enough to handle any of my problems.

And yes, all those things I could worry about regarding my chronic illness might happen. I could loose my friends. I could loose my income. I could feel worse. I might never feel better. But I’m not worried. God’s got it. And He will give me the strength to handle each any every one of my problems as they come. For today, I choose to save my strength. I choose trust.

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How to Count Your Blessings When You Have a Chronic Illness

It requires bravery to count your blessings when it seems like your body is falling apart. When you have a chronic illness, it’s easy to ignore the good. When things around you are in a natural state of decline, you can get sucked into the sentiment that everything is going to “heck in a hand basket.” And when we fall into these thinking traps, it is difficult to recover. In this state, we see scarcity in the world.

Thought it can be difficult at first, I believe you can learn to count your blessings. You can learn to see the abundance in the world. Here are a few tricks that I use to help me get started:

  1. Thankfulness – I can choose to be thankful for the little things and the big ones. Whether it’s rain for the grass or a diagnosis that helps guide my healthcare, I can choose to count those as blessings.
  2. Comparison – Though comparison is always a game of subjectivity, when I compare my life to that of others, it’s always possible to find someone with pain or symptoms worse than mine. I can count my lesser symptoms as blessings.
  3. Wisdom – I have learned a ton through being chronically ill. I can choose to count all my new knowledge and wisdom as a blessing.
  4. Strength – I have gained physical, intellectual and emotional strength over the many years of my illness. This hard-earned strength has become a blessing that now spills over into other’s lives!
  5. Friendships – Because of my illness, I have gained new friends…others who have similar symptoms and parents of children who have chronic illness. What a treasure it is to count those blessings!

I could go on…but you get the point.

Sometimes what starts out as pain, ends in a gift: blessings you can count. Choose to count your blessings today. You are not simply lucky. You are blessed!

 

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Difficult Days Happen…When You Have a 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?

 

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

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?

 

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3 Reasons I Embrace My 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.

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The Perception of Invisible and Chronic Illness

It doesn’t make sense. I look fine on the outside. And, I’m so not fine.

Logically, I can understand why well-people seem unintentionally ignorant at times. Because I hardly ever look sick. The old adage “what you see is what you get” doesn’t apply to those with invisible illnesses. Some people will never understand how everyday tasks can be exceedingly difficult or even impossible for me. They don’t see me during the hours I’m at my worst, because that’s when I stay home in bed or spend time on my couch. They probably won’t see the baskets of meds on my shelves or the volumes of medical paperwork I work hard to keep organized. Well-people don’t know how long my morning routine must be to accommodate the difficulty of just getting my body going. Hopefully, people will only see me at my best…as a productive member of society, contributing in my own unique way. Because while I am sick, being sick is not my identity.

But what’s on the outside doesn’t always display what’s really happening.

People with chronic illness can get very angry when the well-people around them speak or act out of ignorance. Well-people cannot ever understand what it’s like to be sick. And the result…some well-people seem to have what might be referred to as “foot-in-mouth disease.” Even the simplest question from a well-person (“How are you feeling?”) can prompt a wave of frustration from someone whose illness can change on a dime and who thus never quite knows how to answer. Though most well-people have good intentions, their uneducated questions, not-so-helpful hints and personal “when I was sick” stories can be exhausting and enraging for the sick.

Personally, I’ve decided to counter ignorance with love. That means when I get an uneducated question, I try to respond with grace. And when I get those helpful hints on diets, exercise, vitamins or the latest treatments, I listen to see if by chance they know something I don’t that actually might be helpful (even just a sliver of helpful). And when they offer their “when I was sick” stories, I pull out as much empathy as I can find…because even well-people like to know their story is valuable.

So, go ahead and wonder what it’s like to have chronic or invisible illness. But if you ask me…and really mean it…be prepared for my honest answer. Because everything is not always as it seems.