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).
If you like someone to boss you into positive thinking, this affirmation list is the perfect place for you. Welcome! By the way, that was your first affirmation. I’m charging you per happy thought- they don’t come cheap these days, you know? If this makes you smile, that’s double. Technically, it’s not exactly a mantra, but it still counts as positivity. I didn’t make up the rules! If you don’t like it, take it up with the Bureau for Good Vibes. They are monsters when it comes to positive thinking. Just try to have a single doubt in their presence, and security will escort you straight out of the building. Those people sound laid back and relaxed, but that’s just what they want you to think. The truth? Two words: Illumi Nati.
In an attempt to get on their good side, I’ve bribed them with a vintage set of Bob Ross, The Joy of Painting VHS tapes. I’m crossing my fingers that Bob’s “happy little trees” and positive vibe-spraying hair will get me some good karma with the underground happy committee. So I’m sweetening the pot with this affirmation list.
All kidding aside, below is a mix of uplifting words, and useful reminders for you and any friend who might need a pick-me-up. I like to tack encouraging messages for myself up on my wall as a simple way to keep focused on bright spots in my life. (Especially when that darn happiness bureau is out there😉).
- Your butt is the perfect size.
- You give good Facebook.
- Repeat after me: “It’s ok if the house is messy.”
- You folded the socks today- good job! You deserve a cookie.
- You are enough- as you are.
- You don’t have to be fearless to be brave.
- Try being grateful instead of guilty.
- It won’t be perfect, but it will be epic!
- Don’t forget that you are a stone cold warrior.
- You didn’t swear in front of the kids today! A++
- You changed out of your pj’s! Well done, you.
- Gold star for eating breakfast🌟 You earned yourself another cookie…ok, an oatmeal cookie 😉
- The plants are still alive- that’s the way!
- You paid all your bills on time ✔✔
- You wore a bra today- Killing it!
- A nap is a great idea!!!
- You moisturized? Beast mode.
- Face each day like you have a glue stick in one hand and a jar of glitter in the other.
- Punch today in the face like it’s bullying your kid. (But don’t be seriously punching kids for real though. Weirdo.)
- Take your vitamins, get some sunshine, wash behind your ears, and never forget to DVR Project Runway.
- Stop. Freaking. Out.
- You’ve got this.
- Deep breaths.
- Tomorrow is not for today.
- You are meant to be.
- Your purpose goes beyond the walls of a building.
- God has always loved you, and always will.
- No need to make the bed- what kind of psycho does that anyway?
- In some cultures, tummy rolls are a sign of beauty and prosperity. True story.
- If you wish you had more curves, smile more. Your smile is the best curve on your body.
- Smile. Take selfies. Wear what you want. Be happy in your skin. There are millions of people who would love to look exactly like you right now (including you in about 20 years.)
- You can’t buy happiness, but you can buy chocolate. And that’s pretty close.
- I followed my heart, and it lead me to the fridge.
- I’m learning to be my authentic self…my authentic self believes you should be doing the laundry.
- On an emoji scale from unicorns to poops, make today a unicorn kind of day🦄
- In today’s world, caring about other people is about the most radical thing you can do.
- If your grandma were going through what you are now, what would you want to tell her?
- All of this will be worth it in the end.
According to studies in positive psychology dating back since the 1980’s, the way affirmations work is you must repeat the same phrase to yourself over an extended period. Say the positive affirmation every time you have the compusively negative or harmful thought you’re trying to replace. For example, each time you have a reocurring thought or feeling of loneliness, use the same powerful phrase, quote or prayer to affirm that you are loved. In time, you can actually change your own mind and rewire the way you think! #neuroplasticity
I would love to hear your personal favorite affirmation in the comments section below.
This 20-year-old blogger and survivor of multiple chronic illnesses describes her grief process. You may be surprised to see that even on a somber topic like mourning loss of health, she writes from an outlook of gratitude; below she shares why she chooses her approach.
If you like this post, check out the article she wrote last week- it will give you a boost of inspiration!
With a chronic illness, there is no cure. It is all about treating the symptoms and learning to live life with it. It’s like an enemy you can’t get rid of. Its hard to cope with at times. For me, I was working, in college, and training for a half marathon, and one day it hit me like a truck. Within 2 days I was in the hospital. So going from constantly on the go and enjoying a normal 20 year old life to daily appointments, constantly miserable, and not being able to take care of myself alone. Its normal to have grieving stages while being sick, here are ways I grieve with having several chronic illnesses.
- The anger phase.
Its okay to be angry, I completely understand this phase. I’ve lost a lot like my job, a lot of people in my life disappeared, and I can’t do a…
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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.
I just want to remind you of something that may have slipped your mind this morning, or this week, or this month since the seasons of life are changing and the colder months can cast a darker, colder shadow at times.
Each morning, you might want to start fresh, and leave the past behind you, right? But please, friend, don’t forget everything you’ve overcome.
Don’t forget the challenges which seemed impossible…when you said “there is no way I can get through this” but you did, and you are. Don’t ever forget.
Don’t forget when you ran out of every last molecule of energy you had left to give, and you had no idea how you would keep going another moment longer…. but instead of giving up, you found something else inside of you that carried you forward. Don’t forget that driving force within you.
Don’t forget when you had experienced all of the torture you thought you could shoulder. Don’t forget when heartbreak, physical pain, and sleepless nights pushed you past your breaking point. You said, “I can’t endure this nightmare for one more moment.”
Remember when you were ready to forget it all?
How are you still here after everything you’ve been through?
Don’t forget how you made it!
Don’t forget that force inside of you that begins when you’ve reached the end of yourself.
As seasons change, as life continues to surprise you, carry yourself as the OVERCOMER you are.
Links to the featured artist: The Last Sparrow (artistic home furnishings on Etsy), Follow Voilet D’Art on Flickr, Twitter
As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives “will some day be of use.”
I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!
I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.
We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My personal peace rests in God, a relationship which has grown inside of my own tsunami.
This message of purpose is one I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again.
This is my pride speaking!
In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?
The next time someone reminds you that all the pain and struggles you are battling will be worth “something” some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness is not a waste.
I don’t believe we have to wait until we’re perfect for our lives to have value. If that’s true, then I guess we will all be waiting forever!
Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.
It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.
We greatly undervalue the quiet connections, asking others how they are and actually listening in return, sending a note by mail to a struggling friend, or letting someone know they’ve been in your prayers.
Society does not measure these acts as successes, but what if you redefine what success means in your life? You may have very little energy to spare, but what you have to share is precious.
I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing trials?
It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.
I got a new working phone yesterday for my birthday! Woot woot!
I’m still playing around with it, but I have to say that it’s kind of stingy on the emoticons.
You don’t realize how far down the emoticon rabbit hole you’ve gone until all of those little faces are suddenly ripped from your life like a big yellow blur. (Insert sad face here)
Goodbye winky face: you helped me keep my foot out of my mouth so, so, so many times. (insert yikes face here) Now, I’ll have to rely on the ‘LOL’ to save me from myself.
Farewell Tear face: How will anyone know I’m sad? Words just don’t do what one little tear face can.
Mr. Smiley Face, I will miss you the most. Your good old classic “I’m smiling” demeanor may be overused, may at times be the inappropriate emoticon for people to utilize and get on my nerves (rolling eyes face), but you never get old. Keep on smiling, Mr. Smiley!
(Insert 2 laughing faces, winky, and blowing kiss face)
Yep, I would have nailed those emoticons (thumbs up symbol to myself).
It has been Twenty years since RSD crashed into my life and it has been quite the ride. Some moments I have wanted to be over before they happen. Other moments I held onto for dear life because they were all that sustained me through the hours and days of pure physical and psychological torture. At times I was able to be more normal like many of my peers. Other times I behaved and felt as if I were on my death bed. However, if I had the choice to do this all over again there would be nothing that I would ever change. I am not saying I like being sick but all of the gifts that it has helped me to find out about myself in a hurry compared to my “normal” peers has been truly priceless. I will tell a brief side of my tale that has led me to find peace with RSD and my life.
20 Year Anniversary by guest writer, Logan Woods
In February, 1996 I was a normal 15 year old girl who really did not want to go to the dentist, and I got out of it by going to the ER instead. I knelt down and felt like I broke my kneecap in half (I did not). So my mother and brother took me to the local ER to have my knee looked at (I had to be carried, it hurt so bad). They took and X-ray of it and found out that I had somehow knelt on a needle that was now lodged in my lower thigh muscle. They ended up sending me to a different doctor to have surgery on my knee as they could not get it out. The surgery doctor’s next appointment would not be for five days which they thought would give the needle time to work its way up out of the thigh muscle. It worked its way further into the muscle instead, so on that day of the surgery, they took four times as long as they thought they had planned for. After the surgery, the site that they opened up to remove the needle was healing just fine, no complications, no unusual pain, but then on the eighth day after surgery at 4:30, sometime in the afternoon, RSD came into my life. So far has not left, although I keep insisting that she can be on her way now.
So, mid teen years were now controlled by not me, my school, or my mom, but by RSD, and I am just learning how to gain control over the elusive mistress. She swept into my life limiting my ability to go to normal school and participate in normal activities, although looking back at it, she might have saved me from getting too wild and crazy. I hated my ninth grade year before RSD came in the picture but it became even more troubled after. I ended up dropping out of ninth grade because I could not get out of bed due to the intense pain my leg.
The doctors I went to told me was in my head even though my mom kept telling the doctors my leg kept changing colors to this purple splotchy looking thing. My mom believed me but by then it was such a trouble to handle getting told over and over again there is nothing wrong with your leg. So, I gave up going to the doctors and started living with the pain.
I enrolled into a different high school as we had moved during the summer into a new school district. Tenth grade year was magical with the friends that I made and the activities I enrolled in at school. School was great, home was rough, but was do-able. The pain never went away from my knee and I learned how to distance myself from the pain and focus on my life, but there were times that the pain would break past my threshold and I was no longer able to hide it from people.
Eleventh grade I enrolled in dance class at my school and thought that if I was going to “try” to learn to dance I might as well try once more to figure out why my knee still hurt after 18 months of the initial RSD onset. I ended up seeing a doctor whose specialty was RSD though we did not know that at the time. After the initial meeting, within four hours of meeting this doctor, I was officially diagnosed with RSD in my left knee. I thought, okay this can go away with one of these treatments that the doctor wanted us to start trying right away; it was one tough year. So, treatments start, the school year starts, and everything is going ok. I do not know what to tell my friends so I do not tell them a whole lot. They just find me funny that I would become a log when we would have sleepovers; they would use me as a table to put the pizza on.
I started missing more school days but I managed to keep up until the end of that year. I was desperate to have a job, so even though I was not that functional, I got a job for 9 months. It was fun getting the paycheck, but work was fast food, not rocket science. In twelfth grade I ended up having a teacher from my school come to my home to give me school work and tests so that I could graduate with my class, which I barely managed to do.
The pain and treatments that were supposed to help just left me isolated from the world, partly by my choosing and partly because I could not act normal with the raging fire in me all the time, so I turned inward.
I had a boyfriend I loved very much but as time went by we were not a compatible match for each other, and RSD became more of a main focus in my life which I am not so sure that was a good thing.
College time came and I just knew I had to go to college for all those wonderful fun 80’s movies that glamorized colleges, and besides, how was I going to work being sick all the time? I took one class a semester for 8 years after high school. I loved my college years and I made some off-color choices, but hey, I thought isn’t it in college that I can get away with shit? My grades were up and down because of the pain but it gave me the experience of a lifetime- taking my time to learn what I wanted to and figuring out what thrilled me to fight for more than just surviving this illness.
I was figuring out that I had found a passion to learn how to thrive. I was only identifying myself at that time as the girl with RSD, nothing more. It took me years to figure out how to stop identifying myself as that sick RSD woman.
I did, by my hairy son Randy (dog) and my hairy son Orion (cat), my hairy son Siries (cat), and through my hairy sister (dog) who in one form or another was sick. So, I started researching about pet health and focused on pet nutrition as it was something that I could do to affect their health. The love for business, invention, and innovation became my zest for life and I helped me to handle the illness.
It took years to get here- where I can see the future I want for myself, and know that I can have it. I would have what we call the “Lorado” me acting like a tornado being destructive against myself, my possessions and the people I loved. I was unable to control my emotions, and I would get really upset over anything, but really, I was just upset because I was miserable and extremely unhappy.
I was tired of being sick all the time (not like we ever get the choice), I was tired of feeling like the only life I might have is through other people, and tired of myself. So, I had to make a decision if I was going to “stay” I had to change me or more precisely change my thinking.
I read books by people who help people handle their moments in life. I started asking myself what I really wanted in life with or without RSD. I took time to learn to know what I wanted and learned how to stop hating myself and RSD. I would pick a part of myself to like about me and over time I learned to love me and those around me more profoundly and deeply. RSD was no longer my calling card or any way to describe myself. I became Logan, just Logan.
Today, at twenty years, two months, and twenty days into RSD it helps make me, me.
I am becoming a successful business woman by helping to start up a company with my mom and brother, www.Blindsofbeauty.com the one and only company that sells and makes vertical blind slip covers. This is just one of the many companies I will be involved with creating and running. Believe it or not, it is because of RSD that Blinds of Beauty exists, my mom invented vertical blind slip covers as a way to cover the vertical slats that would leave my room even when they were closed blazing hot while I was going through blocks and treatment for the RSD and we were prohibited on our apartment lease from putting holes in the walls. It took a few years (15 years) to start the vertical blind slipcover company but it has been well worth the wait. Blinds of Beauty is giving me the job as the CFO among other responsibilities. Life is pretty great for me now; I just had to find me.
It has been a work in progress to live my life with RSD, ignoring it to the best of my abilities (not always wise), loving the hairy children I have, giving life my whole heart, following my dreams, and having fun. I plan to run companies, adopt a few non-hairy children, have a wonderful partner, live my life on my own terms, enjoy the great moments and breathe through the rough moments.
This week is the launch of Logan’s new website for her company, Blinds of Beauty. Please check it out. It is truly unique! I’m so honored to share Logan’s story here. She is one of the first people with RSD I “met” online over a decade ago, and we have been friends ever since. She is a beautiful person, inside and out, and she deserves every good thing this life has to offer!