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!

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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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Picking A College

Most of you know that I’m a college student. My academics are important to me. Lately i have been struggling to keep my head above water in regards to my school work. My abdominal pain has been getting worse daily. It has taken over my life.

I have always enjoyed school over all. Of course there are days I don’t love it and subjects I don’t like.

Preparing for college was a challenge due to my illness. I began my search early but I wish I started sooner. I choose a college three hours away which was not ideal. I had e expected to be able to go to school full time and have a job. I thought once i began medication i would improve quickly. I had unrealistic expectations. I began school two months,after my fifth surgery. I don’t recommend this.

My parents add I soon realize me going to school so far,away want a good idea. My heath got worse. But i was determined to finish the semester. Over Thanksgiving break I had blood in my urine…game over. I knew I couldn’t go back to school. I completed my first semester online. My plan was to get better over break then go away to school again closer to home. However, with a sever double kidney infection that was not an option. Recently I scheduled my classes with the ‘local’  (which is an hour away) community college. I tired to be happy and excited about the change. I greeted the semester with a good attitude and an open mind. The semester busted at the seams with obstacles. I had to receive antibiotics though an IV, a bladder scope, and a few dozen kidney stones. The rheumatologist I had been seeing took me off of my Lupus medications, which complicated things.

I had been able to get ahead with my classes. The flexibility with online learning is great. I completed the semester with a 3.5 GPA. I had been told that I am not a smart person through out my school career. I never expected to do this well in college. Last semester I ended up with a 4.0 GPA which I have mentioned before mainly because I am so surprised by it.

Entering college is scary and ecciting.  Picking a college and filling out the paper work can be stressful. It is a challenge to find the prefect school for you. I don’t know about you but I don’t know how I’ll feel five minutes from not never mind in a few months to a few years. I recommend beginning your college search as early as you can, this way you will have plenty of time to consider your options and it will be less stressful.

The biggest question is: is it realistic to live on campus (if that’s one of your dreams). It is best to discuss this with whoever helps take care of you, anyone in your support system, a school counselor, and your doctor. You need to make sure your health is stable enough to make that huge jump to living on a college campus. I would recommend either picking a college fairly close to home or near relatives or a close family friend. This way if you end up in the emergency room, are going for extensive testing, or need support someone you know well and trust fully is there for you.

In addition to being close to someone who knows your medical history and you trust there are many other factors to consider when choosing a college.

Some questions to ponder while searching for what college you will attend:

  • Consider what the area is like compared to wear you live. Is it city, suburban, or rural? Will living in the city for example affect your health? Personally I cannot live in the city due to the air and noise.
  • How close is the nearest hospital? What type of a reputation does it have?
  • Will you need to switch doctors? (If so, it is best you do research on what options you have for a new doctor. You want to be sure they know what they are doing and can properly care for you.)
  • Where is the pharmacy?
  • How long can I expect to have insurance coverage? (For example, up to what age am I covered? Do I need to be a full time student to receive or “get” full coverage?
  • Is there a nurse or licensed practitioner?
  • How big is the campus?
  • Where will you be living? Is the dorm building handicap accessible?
  • How many people will you need to share a room and a bathroom with?
  • Whats the food like? Would your body be okay with what the serve?

Let me know your thoughts in the comments! If you are in college currently or have already graduated please share other things to consider when picking a college.

Challenger

I have overcome so many challenges in the past few years. I encounter new challenges daily. I battled depression a bit in high school, low self esteem issues, 5 surgery’s, almost falling into a coma, a concussion, and numerous additional health issues. The health issues have been the most steady issue in my life for at least five years now. I have grown as a person through it all developing more patiences.

I honestly thought my Jr year of high school that I had hit rock bottom with my health. I did not yet have a diagnosis. Yet I was encountering what seemed like every symptom under the sun, from pain to seizures, to rashes. I had seen a few doctors who were absolute quacks. I seriously question their degree. One never ran any tests diagnosing me with Fibromyalgia. Then putting me on Cymbalta and he kept upping the dose. I eventually just stopped taking it because I had become so ill from the medication. Though Jr year was difficult, it was not rock bottom with my health.

I love college but my college years have been laced with many challenges. I had pleurisy, a kidney infection, and began passing stones. I got undiagnosed with Lupus and taken off my medication then rediagnosed. Many of you know I was in the hospital last fall due to an allergic reaction to Reclast. Now I am working through a concussion, kidney stones, flare ups, and tapering off steroids. There is never a dull moment.

I have had my share of challenges but I try to be content wit whatever season of life I am in. Of course that is another challenge. I know the Lord has a beautiful purpose for my life and will use my pain to bring him glory. Right now I am working on strengthening my relationship with him. Making that my number one priority as I face new challenges.I know the Lord will provide all I need to get through each day and I am grateful for that.

If you are facing challenges today, I want you to know that you are not alone. Don’t be afraid to reach out and to tell people that you are struggling. You probably don’t want to make a billboard announcing this but telling trust worthy people such as a family member or a friend. Talking to someone makes a huge difference. I also encourage you to bring your burdened heart to the Lord. Open up and let it all out.

It is okay to grieve what you have lost but don’t forget to also be grateful for all that you have. I want you to understand that just because you cannot do something that does not make you less of a person or a failure. You are beautiful, valuable, and precious. You have an amazing purpose in this world. You will make a difference.

Whatever challenges you are facing remember this is only a season in life and it will pass. Sending spoons, hugs, and prayers ❤

Gonna Break

How much more can I take?

Before this weak body breaks

I know I am strong

But now it is getting harder to move along

Harder now to hide the pain

To force the smile, slap on the mask

Starting to fall faster and faster… here comes the rain

Energy wasted on a smiple pointless task

Don’t bother asking how I am

Surely I will lie, don’t need the sympathy

What they don’t know won’t hurt them

I’ll be fine on my own

Birthday

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My parents and I all have our Birthdays in January. What’s even more unique is my mom and I share a birthday, which is today January 28th. The first six years of my life I was an only child. I adore being a big sister, but I am grateful for the years I spent as an only child. I believe those years allowed me to develop a special bond with each of my parents. “You love your parents, but as you get to know them you fall in love with them.” I believe this quote is absolutely true. As a child, our parents are heros. As teenagers, we drift away from our parents. We are so consumed with our lives, we don’t take enough time to get to know our parents and cherish the small amount of time God lends them to us. I cherish the time I have with my parents.

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My mom and I have always been close. She is the reason I am who I am today. I couldn’t ask for a better mother. God has truly blessed me. She has been with me for every appointment, ER trip, urgent care trip, every test, and every surgery. She’s the one who calms me down when Prednisone makes me crazy or when I’m just overwhelmed with everything. She is a huge encouragement and the source of strength. I am blessed that she introduced me to the Lord and raise me in a church. I am blessed that my mother encouraged and allowed me to go on missions trips and retreats. She always encourages me to lean on the Lord and to find strength in him.

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I wish I could remember all the wonderful moments we shared together as I was growing up however my illnesses have impaired my memory. I cherish the few things I remember, the stories I am told of these moments, the home videos and countless pictures I have.

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I know my illness is extremely difficult for my mother, which is heartbreaking for me. She is an admirable woman. I can only strive to be half as amazing, compassionate, and loving as she is. The strength she has always leaves me in awe. She has overcome and given so much in her life. I God every day that He blessed me with my mother. Thank you is not enough for everything she has done for me. HAPPY BIRTHDAY MOM!

Today, at 2:14 pm I turn 21 years old. I did not think I would see this day. There were many times I wondered if I would wake up in the morning or if the Lord would send his angles to carry me to his arms. I’m only 21, but I have fought for my life a number of times. There are a thousand reasons I should not be alive, but for whatever reason the Lord has allowed me to still be here. 

 Most people cannot wait for their 21st birthday, however I am not most people.As my birthday approached I began to dread it. Another year has passed, making me yet another year older. 21. I have never been a fan of getting older. For as long as I can remember I wanted to stay in toy land, to stay a child. For me growing up was something I dreaded and feared. Until recently I never understood why. Now I am beginning to understand this bazaar fear. The fear is rooted entangled with pain. I began have chronic pain around six years old. Continuously I have associated getting older with more chronic pain as well as my health becoming more complex.

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Though I’m not thrilled to be 21, I am grateful to be alive and to have another year. Today is a day to celebrate everything I have overcome, being alive, and what I have accomplished. While I was 20 I began my Facebook page, this blog, survived my Reclast experience, achieved a 4.0 GPA, and other various small accomplishments. I look forward with hope to what will unfold during my time as a 21 year old. I hope to achieve at least a 3.8 GPA, get my kidney stones to stop, stabilize my health, grow my blog, become closer to God, and be able to go away to college in the fall.

 “For you formed my inward parts; you knitted me together in my mother’s womb.  I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.”

Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart.”

I hope you have a terrific day, thank you for stopping by! Sending lots of spoons, hugs, and prayers ❤

Throw Back Thursday

January is birth defects prevention month, it should also be birth defect awareness month. Birth defects are one of those things people don’t talk about. Many view people with them as outcasts. It is true that some defects are due to carelessness of the expectant mother, however there are many times that there is no way to prevent a birth defect. The cause of birth defects goes unknown for many. In fact some people live a good portion of their lives without ever knowing that they have an internal birth defect. I am one of those people. I never suspected that I had a birth defect and neither did my parents. It was an accident that I found out.

Last January, I went to have cystoscopy. In simple terms this means I had a bladder scope. There are a number of reasons cystoscopy are preformed, for example to look for interstitial cystitis, other bladder disorders, or kidney stones. Generally this is a short scope. Many people remain awake for it. I insisted on being put to sleep and was informed later on that it was the right descion. Right before my cystoscopy I met the doctor who would be preforming the scope on me. We discussed my symptoms and pain. He decided that it would be beneficial to look in my kidneys to see if I had additional stones. As we made our way into the OR, the doctor instructed one of the nurses to clear the schedule for the remained of the morning because my scope would take a while.

My scope took nearly an hour. I woke up in extreme pain. For me the cystoscopy was by far the most painful scope I have ever had done. The nurse begged me to go back to sleep, but I was in too much pain to rest. In addition I needed to use the bathroom. The nurse insisted that I didn’t need to go and argued with me for a while before going to get my mom. Of course I was sleepy when she came back. I could tell by the look on her face that they had found something during the cystoscopy. Fear and joy leaped within me. Joy that someone found something. Fear of what it could be. She told me that I had three kidneys and three ureters.( The doctor was so excited because he has never seen this before). Then explained that I had a stent in my left ureter because they had seen something on that side. I was in awe that I made it to merely a few days before my twentieth birthday and never knew that I had three kidneys.

The medical term for this is a fused Supernumerary Kidney. The kidneys on my right side are fused together which is why no one noticed I had an extra. My right ureters are twisted together. Less than 100 cases are documented worldwide currently. If it is caught during childhood it is removed. Many times the extra kidney begins giving the person trouble during their late teens to early twenties. No research is being done about supernumerary kidneys because it is so rare. Most doctors have minimal knowledge about it.

Nearly everyone who hears that I have an extra kidney think it is cool and ask, “Can you donate the extra one?” Sadly I can’t. No one wants my extra one, it would just give more issues to them. My extra one might be the cause to some of my kidney issues as well as some of my abdominal pain. It does not function a 100%.