Category Archives: Hope
If you’ve been glued to your couch or imprisoned in your bed because of chronic disease or intractable pain…then you may feel trapped, hopeless, even useless. Are you getting tired of staring at the same 4 walls and know that you’ve been made for more?
Whatever you’re feeling right now, your feelings are completely valid given everything you’re going through. Whether you’re feeling depressed or hopeless, frustrated at doctors, even angry at God, all of those feelings are understandable and very difficult emotions to process.
You’ve lost so much in the battle with your health. It’s okay to grieve over your life, and grieve the loss of your health. You built a good life, and the threat of physical invasion is more mentally overwhelming than anyone around you could possibly realize. You didn’t choose this battle, but you’re in it nonetheless.
It’s important to give yourself permission to mourn the things you’re losing. That’s what people mean when they say “be kind to yourself” or “give yourself a break.” Self compassion isn’t the same as self pity. In fact, self loathing begins to dissipate when self compassion enters the picture. If you would show love and tenderness to your daughter or grandmother in your situation, then do the same for yourself. You’re worthy of that care. Dig deep and find understanding and patience for yourself (even if other people around you haven’t).
When we say chronic illness is a “battle,” that’s part of it. Being a warrior is choosing to treat your body with patience instead of anger- even though you may not feel your body deserves your understanding for how it has betrayed you. Being a warrior is giving yourself dignity simply because you’re human, and worthy of it no matter your health or ability status. Being a warrior is staying in this game of life, even when leaving feels like your only option. Of course, battling chronic illness refers to the rigors of healthcare and living through the “hell” in health, but it also refers to giving understanding to the people who don’t understand us in return.
Then, consider finding something constructive to do from exactly where you are. Whether that’s offering to moderate in your favorite online support group, or taking a free web course for something enjoyable (see Domestika.org), getting involved in a weekly Bible study online with a friend (see YouVersion app plans), an online book club over zoom, or getting into a new hobby that you can do laying down.
I know your brain is pushing back with all the reasons you can’t do it, and may already be making you feel that it’s a pointless cause, etc. That’s the same part of your brain that likes to tell you that you’re lazy, and says that no one actually cares about you– it’s just not true, my friend. You’re not lazy, you’re ill. People do care, but they may not know exactly what you need right now. That ugly little gremlin in our brains is a straight up liar.
Just find one new thing, and try it out temporarily. You don’t know where it will lead, who it will impact, and how one small change will help you in the long run.
Your job never defined you in the first place. You are still you and you are still on your journey ❤
You are loved. You are not alone. Please take good care of yourself,
Join us at the disabled art share group Chronically Inspired on Facebook where we share our adapted projects, and encourage each other to get back into doing the things we once loved.
Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
That’s something I’ve been considering more and more in regard to health.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.
And so is yours.
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
World Aids Day 2017
So much progress has been made for a killer autoimmune disease/infection/virus that was once surrounded by so much prejudice and misinformation.
Healthcare was far out of reach. Doctors did not seem to understand. The public turned their backs.
Meanwhile men, women, children, and infants were infected, without care, suffering and passing away.
So much has changed in a relatively short period of time. Still, there’s a long way to go, especially internationally.
Maybe you have a chronic pain condition and feel as though doctors, society, and family have singled you out as a drug addict. Maybe you’re being denied treatment. We continue seeing our own friends in pain pass away due to lack of care… Or if you’re a rare disease survivor and are feeling hopeless about the healthcare situation at hand, please keep this hope in front of you.
If the HIV/AIDS community could create a revolution for themselves in the midst of such a horrific crisis, please keep hope alive that we can also. But we can only do change the system if we stay united.
#worldaidsday #hivawarenessday #raredisease #rarediseaseday #sicklivesmatter
You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future, or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do.
It doesn’t make it any less horrible to know that 100 million Americans with chronic pain can relate to that feeling, but it may help in some way to remember that your feelings are absolutely normal.
Illness, pain, long-suffering literally deprive the brain of the chemicals and hormones required to feel a general sense of happiness and peace. It’s not pain or illness alone that causes depression, but instead the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like serotonin, oxytocin, and dopamine are no longer in balance to counter feelings like uselnessness, loneliness, fear, and hopelessness.
What might have been a passing thought of fear, thanks to the ongoing imbalance in the body, can become a spiraling pit of despair and feelings of doom. Pain can wriggle into your very soul, and drain you of every resource.
This month is my 13 year anniversary with chronic pain (RSD/CRPS). Then when the condition progressed to stage four with comorbidities 6 years ago, I felt as though I completely disappeared. Illness swallowed me up.
If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and move forward with their lives while you fight for your own in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?
I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked.
You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.
You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing.
If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll go on another day, the pain might be pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (P.S. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness.
There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make HOPE become your weapon of choice.
As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”
-Marion Zimmer Bradley
Thank you to The Mighty for choosing my article for publication.
We should all have a calling, right? A passion that drives us. “If you find your purpose, you will never work a day in your life”, and will be wonderfully successful, respected, admired, and make loads of money. At least, that’s what I’ve always heard, so it must be true.
What if I told you that having a “Life’s Purpose” is a myth.
We are taught by society, and modern culture that to be fulfilled, we have to find our one special calling, that career we love, and it will bring us prosperity and fortune all of our days.
Why is this philosophy problematic?
…Because we aren’t built to have only one purpose. We are each meant to fulfill many unique and diverse missions throughout our lives. We have dreams and goals for ourselves, but we are multidimensional beings and our greatest life passions and fulfillments may or may not be wrapped up in that job we desire.
Most of the time when we say, “What is God’s will for my life?” We are referring to our careers, right? But God allows purpose to thrive in so many aspects of our lives.
You can be a passionate artist, a wife, mother, doctor, friend, AND a passionate writer. You can find calling, drive, and fulfillment in multiple areas of your life.
The world hands us such an impossible task of figuring out our one and only sparkling, unicorn reason for existing, and it puts sooooo much pressure on all of us. Once we believe we’ve found our “life’s calling”, complete our degrees or training, we can finally pour our passion into the work… but some time later, there’s an itch that comes over us. We feel unsettled, maybe even claustrophobic. If you’ve felt this way before, it’s miserable. And it’s also a huge disappointment that the dream we wished for doesn’t feel like we hoped it would. You do everything you can to refresh that passion you once had in your work, however, more than likely, the feeling of displacement whittles away at your spirit.
A Life’s Purpose is not the same as a Life of Purpose.
We were not built to stay in one place. God has so many plans for each of us. Some of us are amazing multi-taskers, juggling projects and people all at once, and others of us pour everything we have into one job, person, or other undertaking, and then we are diverted to our next chapters. One season ends, and the next begins. Sometimes there are painful seasons in between for our growth, for pruning, and for us to prepare for whatever we are meant to do next. And for some of us, those painful seasons last, so we seek out purpose and meaning in the big and small moments.
Callings come in seasons. We all hear the stories again and again: Someone had a career they loved, then a crisis struck, but that sideroad somehow illuminated a new and exciting path. It happens all the time.
Like me, you might be asking, “What is God’s will for my life now?” You might feel a little bit lost in the fog, the upside-down, so to speak. Very rarely, we have these beautiful gifts of some extended time when we are just waiting to find out- what’s next? It can seem like forever, but rest assured, you are never forgotten by your Creator.
I’m not very good at being still and peaceful while I wait, because I am so impatient. It is such a comfort to know, we are always fulfilling our Life’s Purpose when our desire is to please God. When you’re seeking to do the next right thing, you can be at ease that you are living inside of your destiny.
Being Broken, I roll over and apologize yet again. I am sorry I am broken. I mean it when I say it.
Agonizing pain makes me the unbearable one. I moan, I cry, I writhe in pain. That isn’t what really hurts. The real pain comes when it wakes you up. When this beast reaches past me and begins its assault on you. It strikes again in the middle of the day when a young boy wants to play and have fun, but he can’t ask because he loves me and he sees that I am in agony. So he suffers quietly trying not to be hurt that he can’t ask. Always the thoughtful loving child he would not want me to suffer. I don’t want him to suffer and feel alone even in my presence. This disease spreads the pain far beyond my arm, my leg, etc. It reaches out and it latches on to the minds and hearts of those I love. It shatters dreams, it breaks hearts, it damages everything it touches.
Broken things can be fixed. Sometimes. They don’t always look the same when they are put back together. Re-purposing, taking something of one use and redefining its use. That is now the story of my life. I won’t accept being useless. I am not. I have purpose, I have life and use left in me. It won’t look the same. The clay has to be reshaped. The design is no longer of my making. I am now at the mercy. Mercy. Grace given when it isn’t earned. Help, I need help. I have never needed help in my life. Now, I need help. I need to find a way through the darkness.
Independent. I have always been a wandering gypsy soul. Stubborn. It’s in my genes. The hardest thing to navigate has been the stripping down of all of that. I can’t just go, can’t just do, can’t just be “me.” Life has changed. I thought it was for the worse. But, along with being all that I am, I am one thing indefinitely. I am the eternal Panglossian! I look for hope and beauty in the worst of situations. And I have found some real treasures. Most of all, the support and love of those closest to me. I am actually learning, learning that I can let others love me. Who knew. I thought I was supposed to do all the work, be on top of handling everything, making sure it all runs smooth and without any hassle to those I love. I have never been able to delegate, I don’t trust any one else to do the job without being bothered by doing it, so I do as much of all of it as I can. No, I am not an overachiever lol, not at all. I just want everything to be perfect! Well, guess what? It isn’t, and I’m not. Not perfect and NOT independent. I now am forced to rely on Mister to love me enough to help me. Guess what, strangely enough, he does! I would NOT have known the depth of his love, or the truth of it without this disease. It has brought me faith in another human, in humanity. It has brought me to a humble place where I can learn compassion, a healthy place to serve from.
I am at the beginning of my journey. It’s been just over a year now. There will be many stories on the way. There will be a lot of pain. There will be endless tears and screams. There will be doubts and fears. I will think many unthinkable thoughts. When it threatens to overwhelm me, I will adjust, take inventory, and recalculate and make new goals. I will find the beauty in the ashes, I will rise up on wings as eagles, I will be more than a conqueror and I will be loved. This is the gift that I am left with facing the beast CRPS. I am given the chance to live in faith, to find hope, to be a light, and to receive love and mercy. It does have a glorious side and a beautiful ending. No matter what. I live in a broken body and a broken spirit. Broken things can be rebuilt for a new purpose and a new glory and a new day. I am not a broken person, I am just being redesigned.
~Wait for it…..it will be amazing!!!
xo ~Rikki Lin
Today’s guestblogger, Rikki Lin is only one year into her journey with chronic pain and she is such an inspiration already. She has started to rebuild a new chronic life by upstarting an oilfield jobs help page and she creates information posters for the CRPS community among other projects geared toward helping people. I’m very grateful she has given a piece of her beautiful self to us today.
(Trigger Warning: Addresses thoughts of death.)
Before a sprained ankle which turned into the chronic pain disease they call Complex Regional Pain Syndrome changed my life at 22 years old, I never knew anyone could feel that much pain. After the doctors told me that this would be PERMANENT, I thought, “I cannot go on like this.”
When I learned that the pain of CRPS can spread all over the entire body and into the organs, I said, “I refuse to live that way.”
Other survivors told me of their broken un-moving bodies from the damage and spreading of CRPS over time and I knew: I would never be able to endure it.
Even in all of my pain, I knew there was so much more to be had. If I was at my breaking point of what I could tolerate then, the future I was promised would never be one I could shoulder.
Fear and doubt spread into me like the pain biting into my body. The fire in my bones was a kindling waiting to ignite the rest of the forest. The pain living inside of me was a monster whispering promises of pain and ensuring me a future of horrors. I knew I could not live through it.
All of my nightmares came to visit me. More, in fact. The years I spent in fear of the pain to come could have never prepared me for the obliteration of my senses which would ensue in these recent years. I cannot say I am still standing, but to say I am still here and just to be coherently typing this is a tremendous miracle, celebration and gift. Yes, even in worse pain than ever before, and much worse than I could have ever imagined- it is still a gift.
The thing about pain is that most people see the other side of it. You go through the hard parts and crawl out on the other side feeling stronger. But what if the worst pain you ever felt was a only a promise of more terrible things to come? That is what some illnesses like RSD, CRPS, MS, ALS, Chiari Malformation, and Arthritis often are: degenerative, debilitating and extraordinarily painful.
I thought I saw into my future of pain, but I could never have foreseen exactly THIS.
This journey has been unique to me as now I realize everyone’s is. I so feared my future because I believed mine would look like someone else’s that I had read about online or was told of in a doctor’s office, but no one’s life is so simple. I have met more unimaginable monsters– but I have survived all of them when I once was sure I couldn’t bear my first few years of chronic pain. I used to live each moment in fear of the future and now that the future has come to pass, how can I continue living in fear? I have fought worse monsters than I was preparing to battle, and I am more grateful to be living now and less fearful than ever before.
Don’t expect the worst. But if your worst comes, don’t assume you know how you will weather it. The strength and resources come at the step you need them, not years or months ahead. Have faith. You are so much stronger than you know.
“Those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.”
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
Featured artwork by Born in November. Thank you to the artist for allowing her powerful, striking photograph You Could Feel the Sky to be displayed here. Please go to her shop and buy one of her conceptual art images or visit her home decor shop to purchase a gift for the holidays.
This blogger has only been up for one week, yet she keeps encouraging me. I know you will be blessed by her message this morning.
You never know what someone is going through until you walk miles (barefoot) or in their shoes with no soles. Everyone attempts to travel alone before needing the company of someone else. The world is composed of too many bullies (intentional or unintentional). Before you form your lips to speak, allow your thoughts to process. The tongue is the most powerful weapon we as humans possess. It’s like a samurai sword piercing through your body and tipping the core of your heart (right before the “lub dub”).
We were all planted on this earth to bloom without fear of someone cutting off our supply of water, oxygen, and essential nutrients and fly without fear of someone clipping our wings. Humans tend to be the most disengaged and insensible beings on earth. We often attack others (with words) like a predator decoying its prey. Words can hurt and in many instances…
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