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!

February

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February is a month focused on love and romance. I challenge you this February to focus on loving yourself, caring for yourself, and loving your story. You are a beautiful individual with so much to offer the world. You have many talents. The things you are passionate about add to your uniqueness. Your passions are there for a reason. You are chronically ill but there is so much more to who you are as a person. You are going to make a huge impact in this world.  Take time to understand why and how much the people in your life love you. Take time to take care of yourself, do things you enjoy, and rest. I hope that this month you can see how wonderful, precious, and valuable you truly are. 

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Wishing you a month overflowing with beauty, blessings, and love. Take everything moment by moment, you have all you need to get through this moment. You are a strong, admirable, and beautiful individual. You are too amazing to put yourself down or speak negatively about yourself. Praying this month is pain free and that you have more then enough spoons. Sending warm hugs and prayers.

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Comment below something you love about yourself.

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%.