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!

College Chatter #Liberty

Stability. It is something most people crave. A schedule to glide through day after day it might sound boring yet there is comfort in the familiar. When one has stability he or she can  plan to do things.

This is one of those things you don’t realize how comforting it was until it vanished. Stability takes on different meanings for a healthy person compared to someone who is chronically ill. Stability is one thing I currently do not have enough of.

This past May I was able to complete my Associates Degree at my local community college. I had been the first student to complete a degree online. By the way, if a school does not have an established online program I do not recommend going that route. By God’s amazing grace, I was able to thrive, however, there were times of extreme frustration that could have been easily avoided.

I had been hoping that my health would be more stable than it is currently. I am still struggling with abnormal POTS symptoms such as tremors, collapsing, and slurred speech. And of course, battling my immune system.

I am beyond thrilled to be continuing my education through Liberty University’s Online Program. There is a wealth of resources such as touring and an online library . The online program is split into different terms in each semester. There are eight weeks of two or three classes than eight weeks of a different set of classes. I am entering into week two of developmental psychology and contemporary worldviews.

In addition, to the stellar academic program and access to online chapel Liberty also offers an online hangout for online students to interact with one another. It is meant to be a cafe type setting. It  might not be ideal, but I will take what I can get at this point, which I am sure any spoonie would understand, as many feel like they are starving for social interaction.

As a new academic school year arises, I want to remind you, there is hope for every student, there is hope for everyone, even you. “People do their best making plans for their lives, but the Eternal guides each step.” Proverbs 16:9 The Voice In general, we are more capable than we give ourselves credit for. A little encouragement goes a lot farther than imagined and baby steps are actually giant leaps. 

It’s a Spoonie World

Sometimes with being sick, I feel like I live in a different world. A world consumed with pills, doctors, and all things medical. The real world is a distant fairy tale. Attempting to budget time according to pain, fatigue, and symptoms. Even the simplest task must be carefully planned out. Planning is necessary but can be destroyed in an instant.

In this alternative universe, my health is the dictator. Rebelling would only make things more difficult. Taped and chained, the wall crumbled, oh the pain.

Occasionally, I try to sneak out to visit the real world, to be normal. These short visits never go as planned. Rebellious excitement floods my veins as I begin talking to someone. But Conversations quickly die when you are from another universe. The spoons are sucked out of my grip. It becomes easier to sit back and observe. Blending in is difficult. As time waltzes away, I realize how different those not citizens of the spoonie world function.

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The spoonie world isn’t all bad, it is filled with the most inspiring people you can encounter.Each stroy, is more beautiful and devastating than the last. Our problems are deeper than what most people are age deal with such as heartbreaks, parties, all-nighters, and peer pressure. We deal with the lastest hospitalization, biopsies, surgeries, and medical testing. Like normal college kids, we cry together and laugh together. We adjust to the Spoonie world challenges and beauty alike becoming stronger daily.

Good Night Encouragement

Today was far from perfect, never the less it was a blessing. You did your best which is all anyone can expect. Every day you are faced with many obstacles, which you gracefully overcome with determination. You might feel like you are dragging your body through the day like you are going to collapse from all the pain. Yet every day you accomplish so much.  You are doing an amazing job! You might not be where you want to be and that is okay, you will get there in time. You are doing a fantastic job where you are in life right now. Don’t be too hard on yourself. Be grateful and proud of the small accomplishments.

Be compassionate to yourself tonight. Take a few moments to reflect on all your amazing accomplishments and blessings. Do something nice to recover from this long day, take some me time. You need to be nice to yourself it not only benefits you but also those around you.

You are an inspiration and a blessing to many people my friend. Your friendship is priceless and very precious. Everyone you encounter is blessed by you. Bless by your smile or your kind words. The strength you display is yet another blessing to others. Inspiring them to be strong in the trials they face. You bless many people daily.

I pray that the Lord would be with you this evening as you unwind and prepare for bed. I pray that you would fall asleep quickly, stay asleep through the night, dream sweetly, and wake up with a lot of spoons.

Holiday Outing Tips

Being chronically ill, an individual gets stuck at home often. Going out, at least for me, is just for a doctor appointment, church, or food shopping. Therefore, going out or having friends over is extremely exciting. It is extremely draining as well.

It is best to go into spoon saving mode when attending holiday events. The night before getting everything together, the more you can accomplish the night before the better. Pick out your outfit, anything you need to do your hair and makeup. I take everything I will need out. My bag is packed, shoes on a shelf (so I don’t need to bend), socks unfolded, and braces in place.

If you are going out, how long will you be out?

What medical supplies will you need to bring? No matter where I go, I always bring a makeup bag packed with things I need. Personally, when going out I bring my inhaler, icy hot, chap stick, nausea medication, Benadryl, and any medication I take as needed. I also put my daily pills in an old pill bottle. My oversized water bottle goes everywhere with me. Sometimes, I carry tea bags as well. You might consider bringing hand warmers, gloves, and braces. Depending on your illness think about bringing extra clothing and toilet paper (some public restrooms run out).

Consider how long the car ride will be. When my fingers aren’t swollen I bring my crocheting stuff. I always have a blanket as well.

Make sure there is food that is okay for you. Personally, I do not drink alcohol. If  you are of drinking age it is so important to discuss this with your doctor. It is great to try to be as normal as possible, but it is not worth flaring for the remainder of the season. It alone can cause flares or interact with medication.

I hope you find this post helpful and that you are able to go out and have fun this holiday season.

‘Tis the for midterms, testing, and finals. Tests were never my favorite part of school. Testing has become more of  challenge because of my illness. Brain fog interrupts as well as symptoms. Ideal testing conditions rarely happen, but I have learned to work through it. I am going to share with you a few spoonie academic testing survival tips.

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Prior to the test gather as much information as you can about the test. The more information the better this way you can plan accordingly.  How many questions? What type of questions (multiple choice, essay, fill in the blank, ect…)  How long is the test? Are you able to retake the test? This question is outside of  the norm, but I have taken two math classes that allow the student to retake quizzes as many times as they want.

If you are receiving accommodations make  your professor is aware of this and applies them. I get extra time. However, none of my professor remember this. I always send out an e-mail before the first test reminding them of my accommodations.

Where are you testing? Do you need to schedule to test some where different? Most schools offer somewhere other than the classroom to take tests if you receive accommodations.This is a great option. When I tested in a different room I was by myself or with under five other people, therefore it is much quitter.

If you  are testing at home it is important to set up your testing space effectively. Personally, I test in my room. I usually aim to take my tests in the morning. If the test is open notes I spread out everything I need. Of course I have additional material such as a calculator or text book or paper and pens near by.

I have my just in medication which includes my tachycardia medication, nausea medication, Tylenol, and my inhaler. I always have a minim of two drinks; hot tea and water. If you have POTS consider having Gatorade on hand.

For longer tests I have a snack on hand. My heating pad is never far away. I set everything up at my dresser (more or less it is my second desk). I am able to put my feet up on another chair if needed. I am able to sit on the floor or my bed. I also get up and walk around during my test because of back pain. Depending on the test and pain levels I either walk a few feet to my door or down stairs to my kitchen. Walking around helps relive some pain and helps lift some of the brain fog.

I always wear compression stocking. Comfortable clothing. I also have a sweat shirt and blanket near by. Testing at home allows me to control the temperature in the room which effects POTS symptoms.

If symptoms get intense know what to do. If you pass out, once you are stable who can you call and inform about what happened? Or if you end up ‘locked’ in the bathroom because of IBD (or another illness).

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I still have not come close to mastering any skills that assist with brain fog and testing. Please comment any ideas!

Five C’s of Coping with Stress

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Stress comes with chronic illness.  Get one chronic illness and receive more stress than you dream possible at no extra cost! Not the type of deal I was hoping to receive. We all know that stress is bad for us, especially for our illnesses though it is nearly impossible to avoid. Like pesky mosquito on a summer day.

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There is stress at work. Stress at school. Stress at the doctors, the pharmacy, with the insurance company, and stress from the endless testing. There is stress at home when the kids constantly bicker. Stress from the medications. Stress from the endless bills. Stress from the pain. There is no way to just avoid stress. Therefore we need to cope with it and this is not always an easy task.

The five Cs of Coping with Chronic illness Stress: a short guide.

Cry

I have always been an emotional girl. Look at me the wrong way and I’ll start to ball my eyes out. Crying is a wonderful and healthy way to cope with stress. Releasing the tears can help the body work through stress and regulate various levels in the brain. A good deep cry can assist in coping with stress.

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Cuddle

Who doesn’t love to cuddle?!? I mean seriously, what is more comforting then grabbing your furry friend and spending some quality cuddle time? Cuddles and hugs come with extra health benefits besides being awesome for stress like lowering blood pressure.

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Coloring

Yes, color. Your favorite childhood pass time is not only acceptable in adulthood but it is recommended and healthy. “When coloring, we activate different areas of our two cerebral hemispheres, says psychologist Gloria Martínez Ayala. “The action involves both logic, by which we color forms, and creativity, when mixing and matching colors. This incorporates the areas of the cerebral cortex involved in vision and fine motor skills [coordination necessary to make small, precise movements]. The relaxation that it provides lowers the activity of the amygdala, a basic part of our brain involved in controlling emotion that is affected by stress (huffingtonpost).” The bottom line? Coloring is a creative way to combat stress.

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Chatter

Call up a close friend and vent away. Letting it all out helps.

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Change

A change in scenery can make a difference. If you are able go for a walk, go over to a friends house, or to your favorite coffee shop.  Go some where different and engage in a different activity.

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Share how you cope with stress.

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: My main illness is Lupus. I have autoimmune and an additional half dozen.
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: Childhood.

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4. The biggest adjustment I’ve had to make is: Not being able to be in the sun not being able to be on my feet for to long.
5. Most people assume: That I’m healthy, faking, or lazy. That I don’t do anything productive on a regular day.
6. The hardest part about mornings are: Being dehydrated. Dizzy spells.
7. My favorite medical TV show is: Diagnosis Me
8. A gadget I couldn’t live without is: My heating pad.
9. The hardest part about nights are: Getting to sleep & saying asleep.
10. Each day I take __ pills & vitamins. (No rude comments, please) Currently about 15. I also do chemo, self-injections, once a week. Please no rude comments, but feel free to privately ask me about my treatment plan! =]

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11. Regarding alternative treatments I: I have tried a lot of different treatments. Currently in regards to alternative treatments I maintain a healthy diet, aroma therapy, and keep stress levels down. A lot of ‘natural’ treatments can be risky for my combination of illnesses.
12. If I had to choose between an invisible illness or visible I would choose: I don’t prefer one over the other. Most days I my illnesses are 110% invisible. I have worn braces or used walking devices and some people are just as judgmental. You’re too young to use that.
13. Regarding working and career: It is difficult that I cannot work right now. I am a full time college student and patient.

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14. People would be surprised to know: I am busy despite my illness. I try to be transparent about it in hopes that others can open up about their illness. In no way am I looking for sympathy I want to encourage, support, and educate others.
15. The hardest thing to accept about my new reality has been: I need to rest and slow down.
16. Something I never thought I could do with my illness that I did was: Achieve a 4.0 GPA.

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17. The commercials about my illness: Ha. They are great… now only if the TV would play them…
18. Something I really miss doing since I was diagnosed is: I miss being normal. Doing normal activities like going out with friends, mission work, and being outside especially in the sun.
19. It was really hard to have to give up: Doing mission work and being outdoors for extended periods of time (AKA on a sunny day more than 5-10 minutes)
20. A new hobby I have taken up since my diagnosis is: Running a Facebook page, a blog, coloring, and crocheting.
21. If I could have one day of feeling normal again I would: Something outdoors, maybe visit the ocean…One day mission trip? So many possibilities!
22. My illness has taught me: To cherish every moment.

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23. Want to know a secret? One thing people say that gets under my skin is: You don’t look sick.
24. But I love it when people: Listen. And are supportive.
25. My favorite motto, scripture, quote that gets me through tough times is: So many to choose from! I love, “The Lord will Fight for you, you need only to be still” Exodus 14:14

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26. When someone is diagnosed I’d like to tell them: To educate themselves. Allow yourself to grieve and to adjust to Lupus. Learning to pace yourself is key. You will inspire so many people!
27. Something that has surprised me about living with an illness is: How rude some people are, especially those in the medical field.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me and being supportive. Don’t under estimate the power of a simple short conversation or a gentle hug.
29. I’m involved with Invisible Illness Weekbecause: I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible. https://chronicallyhopeful2014.wordpress.com/2015/09/08/invisible-illness-awareness-week/

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 30. The fact that you read this list makes me feel: Excited.

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Stillness In the Invisible Fight

Chaos, one word to sum up the invisible fight. There are always phone calls to be made, medical testing, prescriptions to be filled, and doctors to see. And that is only the tip of the ice burg.The invisible fight is draining physically, emotionally, and spirituality. It demands all we’ve got and more. Sucking the spoons right out of our grasp. On top of the daunting tasks embed in chronic illness we attempt to be as normal as possible adding school, work, food shopping, and social events. It is a full time job.

There never seems to be a dull moment. We have become accustom to fighting, it is not a choice it is something we must do in order to survive. Accustom to the demands of this life. We fight against invisible illness, for tests to be run, with insurance companies, and to receive proper treatment. Our defenses are up. We attempt to be strong for those around us. Pretending we don’t need any support. We are weary yet dressed in a warriors optimistic attitude we continue to fight another round.

“The Lord will fight for you, you need only to be still.” Exodus 14:14

Finding stillness in the mists of the fight seems impossible. Putting our to do list aside and quiet our minds we can enter into the presence of the Lord.The Lord is a flawless example of a warrior. He has fought for his children restlessly providing a picture of his love that is beyond words, beyond human comprehension. We can confidently surrender our invisible fight into His sovereign hands. The Lord understands every aspect of our invisible fight. He will support us, substation us, provide for us, and fight for us. The only thing we need to do is be still and trust in Him.

How do you find stillness in the invisible fight?

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