Category Archives: Hope
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 flaring in turn gave me a better appreciation for what people have to bear all over the world. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same privileges.
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.
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.
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.
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.
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.
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 feel this way, but it may help in some way to remember that your feelings are normal.
Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones required to feel happiness and at peace. It’s not pain or illness alone that causes depression, but 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, thanks to the rigors of chronic illness, can become a spiraling pit of despair. Pain wriggles into your very soul, and drains you of every resource.
This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, 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 live happy lives while you fight for your own life 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
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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My toothbrush is relatively small and lightweight. My father would say, it’s “smaller than a breadbox.” It is inexpensive and is of no real value, but my toothbrush is a measuring stick for my ability recently. Independent tooth brushing is a high goal I set long ago, and I have finally reached it!
Just one year ago I was unable to brush my teeth without assistance. Whoever was caring for me (usually my husband) would help me to brush my teeth from a horizontal position in bed. This is how I have done just about everything for the past 3 years. With help, lying down. This past year, however, I have been working hard toward more independence and “going vertical.”
I have a condition called Postural Orthostatic Tachycardia Syndrome (Whew! That’s a mouthful!). P.O.T.S. causes my heart to race like crazy whenever I stand or sit and then my blood pressure drops so quickly and sharply that I pass out or nearly pass out. It’s like you are running a marathon for a moment and then you suddenly get very familiar with the floor. It’s quite a riot, let me tell you. It comes along with other problems like vertigo, chest pains, fatigue, head pain, labored breathing, dehydration, and sometimes I feel like I’m having a full-on panic attack all day. But the most disabling part is the passing out disorder (obviously, being unconscious is pretty disabling).
So, my fight with gravity began by quite literally crawling slowly with lots of rest stops- and only to the restroom. Then, for a couple of years, I was walking slowly to the restroom, held up by a caregiver, bent over with my body in an upside down “L” position so my head was down, keeping my blood pressure up. Now, on my good days, I am working on being fully upright, without help, for (drumroll) about ONE MINUTE altogether. It’s very exciting!
Brushing my teeth means trying to get out of bed, walk about 10 feet to the bathroom, and balancing to brush my teeth without passing out or falling down (P.S., I’m a tumbling expert).
Even though I’m not able to stand or walk vertical throughout, this is HUGE progress in my recovery. A minute upright gained in three years sounds very small, but for someone with an Autonomic Nervous System disorder (Dysautonomia) like POTS, it’s such a big step. Getting to the restroom on my own, and now doing my own dental hygiene on MY terms feels amazing! And guess who has given a stand-up hug? That’s right! THIS GIRL.
I have other neurological chronic pain and chronic illnesses, which many of those with this disorder do. But I am not alone, as so many young women and teen girls have POTS as well. Just know that people with POTS can range on a broad spectrum. There are those who have some mild heart and blood pressure symptoms once in a while, but are functioning normally otherwise, then there are those like myself who are in/out of hospitals for care and are bed-bound for years from the disorder (though hopefully not for much longer…). I’m coming for you POTS!
If you liked any of my images today, they are all original and you may share them, along with my POTS Awareness Plaque.
Great article on Dysautonomia from Elle and the Auto Gnome