Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

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Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

Undercover Zebra

I am so excited to have an amazing EDS warrior guest post today, Hana. Please share to help us raise awareness for this rare disease.
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Ever hear of Undercover Boss? Well, this is Undercover Zebra: Where chronic illness warriors go undercover as healthy individuals to chase their dreams in the real world. On this episode, we have Hana Belanger, an 18-year-old girl with the main diagnosis of  Ehlers-Danlos Syndrome Hypermobility Type (hEDS) who dreams of being a cinematographer in the music industry. As an adolescent, she must figure out her own identity, chase her dreams, and not let a rare disease define her. If you think this to be a challenging feat, then you are right. She is…an undercover zebra.
I start every morning the same way, not wanting to get out of bed. Whether it be my 5:45 school alarm to Bowling For Soup’s “High School Never Ends” or sleeping in past noon on the weekends, the act of waking up is just another arduous chore no likes to endure. So far, just like any other teenager in the world, or really, any non-morning person in society.
Once I finally persuade myself it is worth getting up, I “oil” my joints with either Icy Hot or Arctic Ice analgesic gel. Whichever I just happen to have on my bedside table at the moment. Hypermobility is a symptom of EDS, however, in the morning I find that my joints much rather be stiff with pain, like the Tin Man from The Wizard of Oz. I also tend to take this time to pop back in any joints that may have popped out of place while sleeping the night before. Got to love all those constant dislocations and subluxations. More symptoms due to the faulty collagen my body produces. Mornings with a connective tissue are never boring.
Next step is getting dressed. My favorite comfortable get up has to be pajamas, especially my zebra print ones. Sadly, school dress code does not allow for pj’s. Next best outfit of choice? a baggy band t-shirt and a pair of leggings. Don’t forget to accessorize with wristbands, a mood stone choker, and a plethora of braces and KT tape to keep all those joints in place. Pretty sure my joints like to go out more than I do. I always am found wearing my knee braces, but my collection expands to wrist braces, ankle braces, a back brace, and even a neck brace. I also have a cane I decorated in zebra print duct tape because when you need some extra support you have to make sure its cripple swag awesome.
My morning concludes with the breakfast of champions: AKA medication and vitamins. Then, on school days, I rush off to spend 6 long hours so I may be educated enough to graduate. After 12 years of this grueling routine, it does become tedious. I also have a work study internship with my local cable access station, a slam poet, and freelance videographer. The last three are the most fun I believe and give me a huge platform to be myself. When I am on stage or behind a camera I do not feel like the sick kid. I feel like a poet. I feel like a professional videographer. I feel…human.
Many days it is hard to hide the pain I am going through. EDS likes to throw curve balls more than Alton Brown on his show “Cutthroat Kitchen.” Often I wake up with migraines and nausea, which takes hours and even sometimes all day, despite medication. I have injured myself in school walking to lunch and working a one-hour film shoot. It’s as if EDS does not want me to live my dream.
But I will not cave into this awful disorder. That wouldn’t be very punk rock of me to give in. I know my limits and I go as close to the line without crossing over. I make sacrifices when it is safe to do so to enjoy myself. I have been to music festivals and concerts, filmed all day events, went to my Junior Prom, etc. EDS does not have to rule how I live. I just have to adapt to my circumstances in order to survive.
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Illness Awareness Month

Illness awareness months are a big deal providing an avenue for education. Furthermore, it gives those enduring the illness a set apart time to celebrate all the victories they have had over their illness. It seems more socially acceptable to take off the healthy person mask revealing how life is with a monster on the loss inside. Our awareness month also gives us the much-needed reminder that indeed we are not alone despite the feeling of isolation. It is a cracked door allowing outsiders to get a tiny glimpse into living with a chronic illness.

May is one of those months that someone was like let’s see how many illnesses we can raise awareness for in this month and they might have been a bit overzealous. On one hand, it’s great, especially if the majority of your illnesses have the same awareness month. On the other hand, it is a bit much in a short month.

With a complex illness, you could easily take a year or more talking about the illness, testing, medications, and daily living. Times that by over 12 is hectic. To complicate things a bit more the majority of us have more than one chronic illness!

  • American Stroke Awareness Month (promoted by the National Stroke Association)
  • Arthritis Awareness Month
  • National Asthma and Allergy Awareness Month
  • National Celiac Disease Awareness Month
  • Hepatitis Awareness Month
  • Lupus Awareness Month (promoted by the Lupus Foundation of America)
  • Melanoma/Skin Cancer Detection and Prevention Month
  • Mental Health Month
  • National High Blood Pressure Education Month
  • National Osteoporosis Awareness and Prevention Month
  • Preeclampsia Awareness Month
  • Inflammatory Bowel Disease: Chrons & Ulcerative Colitis.
  • Fibromyalgia
  • Ehlers-Danlos syndrome

I currently have a diagnosis of the following just from this list: Lupus, Ulcerative Colitis, Osteoporosis, Arthritis, and Asthma. In addition, I might have Autoimmune Hepatitis and Ehlers-Danlos Syndrome.

I always like to challenge everyone to learn one new thing in May about one illness. I am a strong believer in education others about chronic illness. I have encountered medical professionals who have been in need of education (I am not trying to be rude in any way). I have had people in the medical field ask me what’s Lupus? A basic understanding is helpful. Knowing just a little bit helps, even if you are not sick, for the day you encounter someone with an invisible illness.

I could go on all day on this topic, but I won’t as I am sure you have plenty on your to-do list today. Have an amazing day! Be sure to Like Chronically Hopeful on Facebook and subscribe to this blog! There will be a handful of guest bloggers which I am SO excited for!

This Is Chronic Illness

How the melody began of the symphony “the Spoonie Life” is unique to each of us. However, like a ton of bricks, the news crushed us emotionally, which no preparation could brace us for the sudden shift in song. Lumped into a group of over 125 million American’s who are in daily combat with their bodies due to chronic illness. After all, these are Invisible Illnesses.

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Adjusting to the new role. A list of things we can no longer do. Harsh comments as well as the stairs, seem to greet us everywhere. Friendships fade away. Symptoms and pain consume each day. Functioning seems nearly impossible. Daily medications. Frequent breaks. This is chronic illness.

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Well-meaning doctors increase anxiety levels. Medical testing is never ending.  No one seems to know what to do. At times our health is out of control and all we can do is ride the roller coaster and pray. Help seems just out of reach. This is chronic illness.

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Yet we cling to hope because our lives depend on it. Dreaming. We find that reason to keep fighting. This is chronic illness.

This week is Invisible Illness Awareness Week. A week to honor you and to give you a voice. To equip you to fight your battle a little better. Making the invisible visible. Making those around us more aware. Hopefully, others will understand the reality of chronic illness.

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My friend with an invisible illness, you are brave, diligent, and compassionate. You overcome  negativity.  You have battled your invisible illness gracefully. You are an inspiration. Don’t give up! You are beautiful. You have an amazing purpose and you are making a difference.

Uninvited Devotional Two

Many wonderful people in the Bible felt left out, lonely, and less than. Uninvited, as we do today. I just began reading The Friends of Jesus by Karen Kingsbury where one of the main characters is Simon the Leper.  Talk about major rejection!

Most of us have heard the term leprosy in the Bible, but how much do we truly know about it? Probably a little less than we would assume. Leprosy is a bacterial infection, it is also known in the medical field as Hansen’s disease. It is slow progressing. It is also called chronic though today there are treatments and it is listed as curable. One treatment option, of course, is none other than Prednisone. Some symptoms include but are not limited to pain in joints, pain in the skin, changed in skin color, tumors, nerve injury, weight loss, and organ damage.

In Biblical times, treatments weren’t available, therefore people who contracted this illness were sent to live in a leopard colony.  Leopards were viewed as sinful. They were seen as unclean. In addition, to the physical pain, those inflicted with this disease encountered deep emotional wounds. They were treated as if they were dead by those they cherished. They were isolated by the community they dedicated their lives to.

“Large crowds followed Jesus when He came down from the mountain. And as Jesus was going along, a leper approached Him and knelt down before Him.Leper: Lord, if You wish to, please heal me and make me clean! Jesus (stretching out His hand): Of course I wish to. Be clean. Immediately the man was healed. Jesus: Don’t tell anyone what just happened. Rather, go to the priest, show yourself to him, and give a wave offering as Moses commanded. Your actions will tell the story of what happened here today.” Matthew 8:14 The Voice Translation

Walking through chronic illness and the rejection that accompanies it is a challenge. Healing does not always come in the way we expect, but the blessings may be larger than expected and God will receive glory from our story. You might feel like a leopard; an outcast, but you are the most beautiful princess in the Father’s eyes. You are a Blood Bought Baby Girl of Jesus Christ and He has a beautiful purpose for your life. I hope you are learning how to live loved.

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Smart Relief Review

As most of you know, I damaged my hip. There isn’t much anyone can do overall, so I have looked into over the counter helps. Which is why I had invested in the Icy Hot Smart Relief. You have most likely seen the TV commercial for it.

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The product description found on Amazon includes:

“Smart Relief offers powerful, portable relief of back pain by bringing TENS technology to pain sufferers in a convenient, affordable way. FDA approved for relief of chronic pain associated with arthritis. TENS (short for Transcutaneous Electrical Nerve Stimulation) blocks the body’s pain signals by sending gentle electrical pulses along the nerve, which reach the brain before the pain signals do.  Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery,  Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery,

Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery,  Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery, reusable electrode pad and a user guide. Easy to use, no wires, no assembly, no doctor needed. The electrical pulses of Smart Relief are generated by a small, battery-powered device. It’s remarkably small – only half an inch thick and smaller than a credit card. It easily snaps onto an adhesive patch, and activates two small electrodes that pass the gentle electrical pulses through your skin and block your pain. It provides the same type of TENS relief you find in physical therapy facilities.”

I would not advise using this on an injury like my hip, specifically torn cartilage. However,  I do use this several times a day on my back. It does help in coping with the back pain. I have arthritis in my back, it isn’t straight, Lupus pain, disc issues, and possibly some Fibromyalgia.

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Like it says in the description it is super easy to use. I have had it over a month and have not needed to change the pad or battery. Sometimes it is delayed with turning on but to me, that isn’t a big deal. It is a nice touch to a flare day kit. Hopefully, this review helps you. Let me know your thoughts in the comments.

http://www.smartrelief.com/

More Than an Accomplishment

Good Morning Warrior,

We compare ourselves from the time we rise in the morning till our head hits the pillow at night. Comparison feeds us lies. Consumed with thoughts of never living up to expectations. Negativity becomes the dictator of our day.

Your identity isn’t in the tasks you accomplish. It isn’t in the things yu can or cannot do. Your identity isn’t the symptoms, pain, medical test, or diagnosis. It isn’t rooted in other people’s options or the things you have loss. You are not defined by any flaw.

I wish you could see what I know, the beauty that radiates from your heart and the way your smile glows. The hope that you anchor in others. You are cherished, valued, and worthy beyond words. Your purpose is amazing. You are making a difference. You are changing the world. Keep pushing forward- even if you crawl go forward. You are stronger than any trial. You are not alone. I am cheering you on and wishing you a wonderful day.

Sending Spoons,

Victoria

Lupus Awareness Day

Lupus awareness day posts never go how I would like. I always have this awesome vision, but then life happens school gets hectic and Lupus ruins my plans.

Happy Lupus Awareness Day! Get your purple on to show support and raise awareness. Lupus awareness day is about educating people about Lupus and also celebrating those who battle the illness daily with courage. We can only have a future with NO Lupus if we KNOW Lupus. A little education goes a long ways.

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It is hard to know what to say because Lupus affects every detail of my life and those around me. Everyone I know with Lupus has been affected in different ways, but one thing is the same this illness has changed our lives forever. We are not solely define by Lupus, but we are reminded and impacted by Lupus every second.

Our normal as young women with Lupus is very different from healthy young women. Personally, I don’t view my life as abnormal. It’s not until I talk with a healthy friend that I remember I need to adjust the way I talk and that they don’t understand the medical terms I’m using. Having friends with Lupus has given me a sense of normalcy. We laugh, talk, and swap stories like any other twenty-something-year-old.

What is it like to live with Lupus? The symptoms can be overwhelming. It is a lot to take in for a healthy person. It is difficult to explain. Every day is different. For me living with Lupus means joint pain, fatigue, and sun sensitivity daily. Often I have rashes or hives, bruises, headaches, bladder pain, chest pain, and hair loss. No two cases are the same. Lupus is complex, making it difficult for health care professionals, caregivers, the support system, and the person battling Lupus.  With Lupus, the autoimmune system can attack anything.

Take a moment today to learn something about Lupus or talk to someone who battles Lupus, you will be surprised how much you can learn.

Brush of Wings: A Book Review

I had the honor of reading and reviewing Brush of Wings, which is the third book in the  Angel Walking series by Karen Kingsbury. The first two books were beyond excellent. The concept of the book reminds me of the television show Touched by an Angel. Reading the first two books is the only way this book will make sense.

I love how Karen Kingsbury keeps Christ as the main focus of the book. You see the characters wrestle with God and strengthen their relationship with him. The reader also sees the struggles the characters encounter as well as how they cope with it as young adult Christians.

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The characters come to life! Completely amazing.  Mary Catherine is a young woman with a passion for serving the Lord. She is full of life.She had a medical condition, however, she refused to tell anyone. Her health spiraled out of control. Despite warnings from her doctor, she ventures to Africa on a mission trip. Her best friend is Sami..\ Marcus Dillinger, is possibly the most persistent and patient guy. He pursued her with all his heart, praying for her daily. He crosses oceans to try to save Mary Catherine when she became critically ill, on deaths door step.

I truly felt a bond with Mary Catherine because of her medical condition and her passion for mission work. She, like most of us with an illness didn’t want to be a burden or to worry those she loved. She hid it so well that it caused a tragedy. The reader sees the struggles of all the she faces due to her condition. Again, most of us with illness can relate to this, illness changes lives no matter how hard we fight it.

The four friends have been on countless adventures, but this book topped them all. There were surprises and excitement in each chapter. They assist in running a teen program for teens involved in gangs.

“The team of angels walking is busier than ever in this epic battle between life and death. A Brush of Wings is a poignant tale of love, sacrifice, and the power of faith” (Kingsbury).  The team restlessly and fervently prays for each of these people and for an unborn baby who will one day impact America. He will be a modern C.S. Lewis. Each angel appears in human form to assist with the storms. In addition, the angles battle demons that the people are unaware of.

The ending was amazingly unexpected and perfectly beautiful. The biggest disappointment is that this is the last book in the series. Though the book is fiction Karen Kingsbury writes a book that does more than entertain. It also helps the reader grow in faith and in their relationship with Christ. I love how she includes scripture throughout the book as well.