woman looking out her window during autumn

September marks the start of a new season. A time of change. A reminder that nothing is stagnant. Life in particular has twists and turns, both good and bad.

Whether we have good health or chronic illness, life has seasons. Things will happen that are not connected with our chronic disease. They are just normal life events.

 

However, living with chronic illness adds a complex layer to these normal seasons of life. The good times can seem intensified as we know what it’s like to experience the depth of pain and we also so often have to miss out on special events because of our illness. So when life is good, it feels extra good. It can feel euphoric.

However, when life throws curve balls at us (not health-related) we can, if we are not careful, make them feel larger than they really are. We are already experiencing health battles with constant pain, fatigue and niggling concern about our health and the impact it will have on our future. This can easily make us less tolerant of even the ordinary difficult seasons or events that interrupt the smooth flow of daily life.

An argument with a loved one, the inconvenience of an appliance breaking down, someone on the phone being less than helpful, etc., can quickly become catastrophic in the life and mind of those battling chronic disease.

If you are experiencing a season when you feel like everything is against you, just take a step back for a minute. Sit quietly and think about the issue that is distressing you. Is it as bad as you think?

Is it that it just feels like the last straw but in actual fact the main issue is that you are just too tired to deal with it?

By taking time out to stop and think calmly about your difficult day or season, you might surprise yourself and find you are actually able to think of a way to handle it without it being blown out of proportion and without it causing you undue health repercussions.

On the flip side, if you are experiencing a season of joy and good times, enjoy every minute. Those times are priceless and deserve to be celebrated, especially for those battling chronic disease.

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I hope and pray this new season brings you much joy, even with the challenges that chronic disease will always bring. Just remember to try to keep everything in perspective and stop and breathe. The title of a well known book comes to mind… “Don’t Sweat the Small Stuff.”

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Thinkstock photo via evgenyatamanenko.

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This post was sponsored by Novartis.

It was my final year of college and, like any senior, I was looking forward to graduating, celebrating with friends, and getting started with my career. I was 21 years old when all of that changed.

I first noticed bruises all over my body. I didn’t know what was wrong, so I went to my primary care doctor for testing, thinking it would be a minor issue. Later, my doctor called. With fear and uncertainty in her voice, she told me my platelet count was extremely low and that I needed to see a hematologist immediately — it was an emergency. With the results we were seeing, the hematologist thought it was chronic immune thrombocytopenia (cITP), but he had to rule out other diseases because cITP is a diagnosis of exclusion. From what I have since learned, my situation was unique in that I received a diagnosis fairly quickly, whereas other patients often can be misdiagnosed or face a long road to diagnosis.

After I was diagnosed, I learned cITP is “a rare autoimmune disease where platelets don’t function properly. Platelets are the blood cells that allow the blood to clot and keep blood vessels intact, and platelet levels that are very low can result in dangerous internal bleeding and bruising.”

For me personally, the most difficult part of living with cITP has been its impact on my schedule. From the amount of time I devoted to getting blood tests, going to the doctor and waiting for test results, coupled with the symptoms of the disease, learning to live well with cITP was incredibly challenging. In college, while my friends were out socializing and enjoying the last few months of our final semester, I spent most of my free time at the doctor’s office and adjusting to the difficulties that come with this disease.

The emotional roller coaster, fatigue, and interruptions to life that accompany cITP can be scary and frustrating. As someone living with this disease, I encourage healthcare professionals managing cITP to learn as much as they can about how the disease affects their patients’ lives. It’s important that practitioners understand the full impact of the disease and can ensure their patients have the resources they need.

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My advice to anyone diagnosed with cITP is to make sure you have a support system to lean on — whether it’s your family, friends or the advocacy community. Work with your healthcare team to gather as much information as possible, which will help you understand all of your options, and seek out the support of advocacy groups. When it comes to cITP, there’s no truer saying than “knowledge is power.”

To learn more about ITP, visit MyITPLife.com.


I recently posted a picture on Facebook of my first outing on my mobility scooter to our local shopping center. It was a momentous occasion. The adrenaline of being able to move more than 50 meters kicked in and before we knew it 90 minutes had passed.

It was a lovely afternoon and I don’t regret it for a minute. So many friends and family who saw my post on Facebook were excited to see me out and about. Expectations that this was a whole new beginning for me were expressed in loving comments. I so appreciated every one of those comments and the spirit in which they were written.

The next day I felt reasonably OK. I think the adrenaline of having achieved this huge milestone was still running through my veins. I even managed to color my hair the following afternoon, although once I started I began to realize I was probably pushing things just a little.

The second day after my outing was a huge wakeup call. I couldn’t move. My legs were in so much pain it was as if they had re-broken. The muscles were so fatigued they couldn’t support my weight. My whole body felt like it had gained 100 kilograms and the inflammation was rampant throughout my entire body.

I had taken a leap too far. My own expectations after purchasing the mobility scooter and the expectations of others who were willing me to be more active and mobile and have something of a more “normal” life, were driving me to push beyond what my disease would allow.

It’s a week since that outing and I have struggled more over the past seven days than I have over the past two years. My quality of life at home has been terrible. Before pushing myself to get out and about on the scooter, I was able to enjoy short car trips to local cafes or sit in the park and take in the beautiful views of the Bay. I was able to putter happily around my home independently, cleaning in small bursts, sitting in the garden, writing at my desk, chatting on the phone and most importantly providing support to the members of my online forum.

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I’ve tried to continue to do some of that over the past seven days, but it has been so limited and I am still not able to get the pain under control. It has all been a leap too far.

So what does this all mean for my future adventures on the mobility scooter? It means lowering my expectations. It means not feeling guilty if I can’t get out on the scooter at regular intervals. It means being content to use it, not necessarily as a leisure item but as a transport means, for important or special outings that require me to get to from A to B when I can’t make the distance on crutches.

My bone disease attacks my muscles as well as my bones. It causes my bones to die but it also causes muscular atrophy and avascular necrosis. The vibrations of the scooter unfortunately aggravate these issues. In conjunction with an occupational therapist, we have made as many adjustments as possible to the scooter to help alleviate these consequences, but we all knew we couldn’t eradicate them entirely.

Living with a chronic illness means living with realistic expectations. I will always test my limits… that’s just who I am and what I’ve always done no matter what life has thrown at me. However, I have also learned to be content with whatever state I find myself in.

I will get back on the horse, so to speak, but not tomorrow or the next day or maybe not even this month — and that’s OK. I will also make sure that my next adventure on my scooter will be no longer than 30 minutes and I will carefully assess how I fare afterwards. Slow and steady will be my approach.

My “normal” is so very different from what others can or can’t do. It’s unique to me, but then that really is the case for everyone. After all what is really “normal?”

What is important is being happy and having the best quality of life possible. I have that in spades, and if I’m not posting photos on Facebook of me out and about, rest assured I am happily content at home doing the things I love, things that are within my limits.

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Thinkstock photo by Tharakorn.


I heard her cries with my heart, more than with my ears, each wail reverberating in my aching chest. I cradled her head and held her rigid body against mine as she yelled, “No, no, no!” then heaved a shaky breath to release another loud howl. I whispered in her ear, “I’m here. I love you,” again and again, as I swayed and tasted the salty tears that ran down her neck. For five minutes I felt the waves of emotions that coursed through her tired body – confusion, anger, frustration, fear – as she succumbed to exhaustion.

I absorbed her helpless desperation, but wouldn’t, couldn’t, let myself collapse beneath it. Instead I just held her, rocked her, and continued my chant, “I’m here. I love you.”

There is a sacred space we enter with another person when we can let them feel what they are feeling without avoidance, advice, judgement, or tense discomfort. Simply to tell them, “I’m here and I love you.”

I am not in my daughter’s skin, and so I don’t know what it feels like to have steroids coursing through me, creating a surge of unpredictable emotions and moods. This little girl has all these new big feelings without words to even make sense out of them. I want to understand what she feels, I want to tell her how to make it better, or distract her somehow. But in this desperate moment, after a sleepless night, a long morning, and still no nap, I can only be here with her as a witness.

Yes darling, you are miserable. Your body aches, you are tired but your body won’t behave and sleep as it should. You feel angry and powerless. You want mommy to make it all better, and you are learning, maybe for the first time, that there are some things that mommy can’t fix. But I am here, I am with you in this. I love you.

And in this brave moment between a helpless baby and her helpless mommy, I begin to learn a lot about how to help someone heal.

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When we are confused, overcome by big emotions we can’t explain, when life hurts and we feel too tired to even make our bed, we don’t need advice. We don’t need platitudes, or our pain to be wiped away like an unsightly smudge of dirt. We need a brave person to stay and hold us through the waves of grief, anger, desperation, and longing, to whisper lovingly, “I am here.” When life knocks the breath out of us, sometimes the bravest thing to do is to inhale and exhale those first few breaths, to be held by the loving arms of those there to support you, and fearlessly succumb to the illusive sleep that our tired souls need.

You are seen. You are loved. Dear one, you are so, so brave.

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Thinkstock Image By: moodboard


Patients describe what #Rare is for them.


I’m part of a group of amazing parents and children; people bonded by diagnoses — most you’ve probably never heard of.

Many disabilities, differences and illnesses are not easy to identify in people we may know or meet.

In a world where kids think they have to keep their invisible differences hidden, we disagree. 

More than ever before, our world is polarized, separated and less accepting. Thus, we fight daily for awareness, inclusion and compassion.

We’re exhausted by people being ignored or judged because what makes them different isn’t visible at first glance.

If you ask the naysayers or look in history textbooks, they tell you what we’re trying to do is impossible.

So how do we make the impossible a reality?

Because we’re fighting against ignorance, we do things differently. We lead with empathy and education. We don’t have unlimited resources, so we rely on relationships to spread our movement. 

 

And it’s happening.

Every single day.

It’s happening through books, articles, television shows and films.

It’s happening on playgrounds, in grocery stores, in forward thinking businesses, places of worship and in classrooms.

Acceptance of invisible differences in growing.

We are winning. 

We believe our invisible differences are part of our lives, but they don’t define us.

We won’t stop until we change the world.

This is our manifesto.

A version of this post appeared on rshibbard.com.

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