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.

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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.

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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The Blessing of Pain

Returning home from the hospital is a breath of fresh air, however it comes with countless diverse challenges. I tend to forget that being in the hospital demands a lot from my body. Though I feel as though all I did was rest, it is actually the conservatoire. The dehydration and lack of nutrition take a toll on the body. Not to mention daily blood work, new medications, antibiotics, cat-scans, and additional testing. Despite the weakness, towards the end of my stay at the hospital I attempted to walk up and down the hall a few times a day. My strength is still oceans away.

Being admitted to the hospital has drained all of my strength. My to do list swarms my cluttered mind. I desperately want to go back to ‘normal’, but I know if I push too hard too fast my body will not forgive me. Regaining some sort of balance and normalcy is a moment by movement struggle. It is hard to determine if I am pushing myself too hard or not hard enough.  #Spoonie Life Struggles

Of course, it is the end of the semester. Therefore losing ten days is drastic. I am usual complete my school work weeks ahead of time. I hate having assignments hanging over my head. Being behind in school work is a nightmare for me.

After leaving the hospital I reflect as much as my weary mind allows me to about the days before being admitted, the stay, and life in general. I can’t help, but acknowledge the blessing of pain. The blessing of pain sounds bazaar, for lack of a more fitting word. No one enjoys being in pain, it is absolutely miserable. But, God gave us pain for a reason, ultimately it will bring glory to His name and sometimes it is a life savor. Intense pain is a red flag scream, “HEY WAKE UP, SOMETHING IS WRONG.” Many times being a spoonie I ignore these sings. Discerning what is urgent is difficult.

I was informed the night that I was admitted, normal people do not have any signs of high liver enzymes. Normal people experience no pain. However, personally the liver complications nearly broke the pain scale. My pain was without a doubt a ten out of ten.

Honestly, that entire day is a blur, I could not think straight and was consumed with symptoms, pain, and the worst weakness. I nearly feel asleep talking to people at church, which is out of character for me. The Lord truly blessed me though my pain that day. If it wasn’t for the weakness, pain, and my mom I could have encountered permit damage. The negative possibilities spelled out to me were shocking. No one knows how my enzymes rocked up so high then crashed at the speed of light, none of it made logical sense. Without a doubt my condition would have been much worse. It is hard to swallow the pill of beauty and blessings through our pain. “ Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance,  and endurance produces character, and character produces hope,  and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5. 

The Lord is faithful and he always provides. He graciously pours out countless blessings in our lives, but we fail frequently to acknowledge them or to understand them. The Lord uses everything for his glory. He can turn our worst pain into His greatest blessing.

Dear Lupus

Dear Lupus,

You came into my life abruptly and completely took over. You have stolen a lot from me. You have put me through countless hours of doctor visits, medical testing, and unbearable pain. You dictate my life.

Because of you…

I cannot trust my body

I lose hair

I wake up in the morning with rashes and fresh bruises

I need to rest too much

I had to give up dance

I can no longer enjoy time outdoors

I need to take pills everyday

I cannot hang out with friends

Because of you…

I struggle to write

I have trouble walking on my own too often

I have lost friends

I missed my prom

And other ‘important’ high school events

There are days…

I cannot eat

I drag myself through the day

lifting my tooth-brush is tiring

I cannot stop crying because of you

Though you have caused set backs and heart breaks, I cannot neglect to recognize the positives. You have taught me a number of things. You have helped shape me into the person I am today. I can fake a smile and tell jokes despite my pain. I am more grateful and find tremendous joy in the simple things. I cherish every moment with those I love. I have met inspiriting people.

You will win many battles BUT I am not going down without a fight and ultimately I will win. We will defeat you Lupus.

Sincerely Your Grateful Victim,

Victoria

A New World

I have just stepped into the world of Methotrexate. Though I am a foreigner, I must admit I am excited to be on this journey. Let me back up. I am sure someone is thinking, “What is Methotrexate?” Methotrexate is a medication which falls into the following classifications: Disease Modifying Anti Rheumatic Drug, Immunosuppressants; Antineoplastics, Antimetabolite, Immunomodulators, and Chemotherapy. I’m sure the majority of this list looks Greek to you, just a bunch of medical mumble jumbo.

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Methotrexate slows down the reproduction of various cells. It also decreases inflammation. It is used to treat diverse illnesses, however it is not completely understood why it improves some illnesses. It is also said to decrease pain and stiffness due to athirst. Methotrexate is used to treat Cancer, RA, Lupus, Psoriasis, IBD, and a handful of additional chronic illnesses. Though many people go on this medication only half of patients improve.

As with any medication, Methotrexate can come with a variety of side effects. Some include: dizziness, drowsiness, headache, nausea, swollen, tender gums, decreased appetite, and hair loss. It is essential to weigh the pros and the cons before beginning any medication. It is also vital to be extremely education this way you know what to expect.

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When my doctor mentioned Methotrexate, my anxieties about seeing a new doctor melted away. Excitement ran through my veins. I had researched and discussed the possibly of going on this medication a while ago though it seemed unlikely anyone would put me on it. The doctor offered give me information on it and allow me to think about beginning the medication. Consumed with disappointment I informed her that I was educated about this medication. That’s when she decided to begin me on a low dose of Methotrexate. I do believe this is a positive move for me. I feel like this medication will work well with my body. I am hopeful that I will be able to function more the longer I am on it.

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Currently I take Methotrexate orally, pill form. It also comes in a self-injection, which sounds ideal to me because it gets into your system quicker and there are less side effects. I only take it once a week. I took my first dose Friday night, around 8 pm. I chose to do it on the weekend this way, once school begins again I have time to recover. Most people say it is best to take it at night this way you can ‘sleep off’ the side effects. I agree 110%.

I did have slight anxiety about beginning a new medication, due to the reaction I had to Reclast (https://chronicallyhopeful2014.wordpress.com/2014/10/25/reclast/). I think it is normal to have some anxiety when altering your treatment plan.

I ate dinner around 6 pm then completed my evening routine. I had a few crackers 15 minutes before taking it. I made sure I was comfortable, had anything I could possible need, and relaxed before taking it. . I felt completely fine, until I stood up. Then I began getting dizzy and some nausea began to set in. Fatigue and nausea slowly but steadily increased. An hour and a half after I began getting a head ace, but it was mild. I had peppermint tea to help settle my stomach. Before I went to sleep I was experiencing mild dizziness, headache (6), slight increase in upper abdominal pain, extreme fatigue, nausea (7), and feeling a bit foggy. Two hours after taking Methotrexate I went to bed.

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The ‘side effects’ I experienced were not out of the norm for me. Honestly I had expected it to be a lot worse. I have heard that the first two doses are the worse. I think my first dose went very well.

I did not sleep well that night, which is most likely due to the fact that I had my Benlysta treatment that day as well. The following day I experienced a lot of nausea. I did have fatigue however I cannot blame it on the medication because that has been an ongoing issue.

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I hope if you are considering beginning this medication that you found this blog post helpful. Please feel free to ask questions. I will be doing a Methotrexate survival guide in the future. Sending spoons, prayers, and hugs. ❤