To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

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Dysautonomia Awareness

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October is slipping by fairly quickly because of school and pyelonephritis. I truly wish I had more time to devote to  Dysautonomia awareness month. Millions of people are affected by  Dysautonomia worldwide. Sadly, like with many illnesses, there is not enough research or enough treatment plans. “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about.” In addition, I strongly encourage you to take a look at this video from the Dysautonomia foundation.

POTS Awareness Video

The beginning of my POTS symptoms is unclear. I had adapted to my peculiar symptoms. Then I landed in the cardiac unit from an allergic reaction to Reclast about two years ago. My nurse had woke me up a handful of times because of tachycardia. Then I overheard some medical professionals discussing my case and mentioned that I might have POTS. Of course, I did the tilt table a few weeks later with extremely positive results.

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POTS impacts my life daily. Some daily symptoms include Tachycardia , low blood pressure, dizzy spells, not absorbing things properly, brain fog, fatigue, and dehydration. In addition, I collapse, shake, and pass out. Currently, my treatment plan isn’t excellent. My doctor refuses to order saline. My only POTS specific medication is tachycardia medication. I do not have additional treatment options at this point in time due to my overlapping illnesses and treatment plan overall.

Accommodating myself is a challenge, to say the least. Hydration is a struggle, especially due to the fact that I cannot absorb fluids properly at times with Ulcerative Colitis.  Gatorade, water, tea, and drip drop are some ways I attempt to fight dehydration at home. At times, my cats can sense when I am going to pass out or have a POTS flare. In addition, I do minor diet modifications. Compression stockings are a must, though I wish they helped a bit more. Whenever I go food shopping I use a wheelchair.  If I am on my feet I clench the muscles in my legs and back to assist blood flow. I never lock my legs. I elevate my legs frequently as well.

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Education of POTS is lacking majorly in the medical field. I recently came a crossed a doctor that believed that POTS is purely a psychiatric disorder. Needless to say, I was irritated with the conversation. POTS is a health condition. It is complex. There are no cookie cutter patients. New research suggests that it might be an autoimmune disorder.

The Foundation page has some excellent resources for living with POTS. I hope you learned something from this post! If you live with Dysautonomia share what type and how it impacts your life in the comments. Lastly, if you aren’t in a support group find one. There are a wealth of in-person as well as online support groups.

‘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!

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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You’re a Fighter who Inspires me

You are a fighter who inspires me. Daily you demonstrate to the world what a fighter looks like. You struggle as you begin your day. Through out your day you accomplish a lot and battle many things because of your illness. Your optimistic attitude is inspirational. You battle so much endlessly. No one knows the depths of your invisible fight. Much of it is internal. Though you are weary your smile holds stunning beauty and inspiration. The fight is never easy. Some days the temptation to surrender is appealing, but you keep pushing forward.

My heart overflows with thankfulness for your presence here on Chronically Hopeful. It is an honor to know that you are here. I am inspired by your fight against invisible illness; your story. I am proud of all that you have overcome. You are my inspiration. You inspire me to keep fighting.Thank you for just being you. Thank you for fighting this chronic illness battle. Thank you for never giving up.I hope you will take a moment today to ponder your invisible fight. Be proud of how far you have come. Celebrate all that you have over come.

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Your illness might be invisible, but you are certainly not invisible. You matter. Your story matters.

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Dear Caregiver,

You have an important role in the invisible fight. You acquired a unique view of invisible illness. You provide support, assist with daily living tasks, and push us to be the best person we can be. You push us to keep fighting providing hope when we want to give up. You have accompanied us to countless doctors appointments, medical testing, and procedures. When we couldn’t find the words, you were our voice. A priceless advocate. You have seen us at our worst and our best. You help sort though medications and bills. You listen to our frustrations, fears, and ambitions.  You laugh at our medical jokes. You encourage us to embrace this new season of life and the person that we are becoming.

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Honestly, you could never be paid enough for your efforts. Thank you does seem to express enough gratitude. We notice all the little things. We appreciate all your effort, all that you have done, your support, and we appreciate you. You are a warrior; a hero. You demonstrate unthinkable strength. You are an inspiration. Thank you for all you do!

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But You Don’t Look Sick

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“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.

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The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

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“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.

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Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?

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Invisible Illness Awareness Week

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There is more than meets the eye, don’t judge a book by its cover. Sayings we can spit out weightlessly in a moment notice. Our brains have memorized the words yet in many situations do not comprehend the depth of these words. Riding through the motions of life we jump to various conclusions based merely on what our eyes rely to us. We are quick to jump to conclusions and far too judgmental.

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Invisible illness awareness week is essential. “But you don’t look sick” is one of the most over used phrases in the Spoonie world. Our outward appearance does not clearly display the war raging inside our bodies. Many individuals with chronic illnesses lose their friends, are treated poorly by family members, and receive rude comments from strangers. There is a lack of understanding and a lack of empathy. People make assumptions based on appearance and many times are unwilling to listen to what is really going on with an individual who is ill.

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Invisible illness awareness week is a campaign founded by Lisa Copen over ten years ago. Lisa is the inspirational founder of Rest Ministries.  Invisible illness awareness week empowers those who live daily with a chronic illness.  Additionally it raises awareness for countless invisible illnesses. “96% of chronic illnesses are invisible.” This campaign strives to make the invisible…visible. While an individual might not see our illness that does not make it any less real. It is very real. A battle that must be fought without ceasing.

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My heart is heavy with passion for the invisible fight. Raising awareness for chronic illness is vital to me. I believe that educating people about chronic illness is essential. Knowledge is power. Educating people who don’t have illnesses enhances their empathy for those who battle chronic illness daily.

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The campaign and raising awareness in general impacts those who are chronically ill as well. It is empowering. It also encourages those who are chronically ill to keep fighting. Raising awareness reminds people that they are not alone, they are not the only one struggling with illness and the challenges it presents.

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.

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This year invisible illness awareness week is September 28th – October 4th. The theme is My Invisible Fight. I will be posting invisible illness awareness things here and on my facebook page Chronically Hopeful through out the month.

Join us on Facebook:

https://www.facebook.com/InvisibleIllnessWeek/timeline

https://www.facebook.com/chronicallyhopeful17?ref=hl

There are many effortless ways to get involved in invisible illness awareness week. Check out and like both the invisible illness week and chronically hopeful facebook pages. There will be a wealth of resources on each page daily. Uplifting pictures will be shared, beautiful stories, and articles. There will also be online conferences throughout the week.

http://invisibleillnessweek.com/

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