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!

Not fine

She seems fine

Her smile shines

Proves she is all right

Put on the mask

To hide all inside

To be strong

Cannot seem to find the words to her song

Her hearts been wandering for miles

Though she tries to smile

None sees the tears she cries

Wishes she could fly

To escape all her troubles

A Reason Why

Maybe there is a reason

For all the storms in life

For all the tears we cry

Maybe there is a reason

For every season

Why flowers bloom

Leaves glide

Snow blankets the Earth

And the sun warms our hearts

Maybe there is a reason

I’m alive

Maybe I have a purpose

Maybe I could change a life

Have you ever thought maybe just maybe

There’s a reason why the sun rises and sets

Why people go through hard times

Why you’re alive

Maybe just maybe there is a reason why

She is the Clay

Tears have made her face moist

She’s longing to hear your voice

Seeking guidance to make a choice

She’s waiting day after day

Knows you are the potter and she is the clay

Things will fall into place in your time

Not alone in this climb

You’ll get her out of this bind

Let her know you’re near

There’s nothing to fear

Make her path clear

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Prednisone Part One

I have shared on here off and on about my treatment plan. My treatment plan has drastically changed after leaving the hospital. This is partly due to my liver and partly my doctors just being a bit annoying. I have been pulled off of Methotrexate and Benlysta.  Right now my main medication is Prednisone. I have decided to do a small series of Prednisone blog posts, hopefully someone will find it helpful. Prednisone, it is almost always a love- hate relationship. It is unclear which is better being on it or not. There are an abundance of harsh side effects, yet it is a life savior. 46bde1cc6919eb9cff7a962b8c6f5026

Most Spoonies know of  Prednisone, for those who don’t, I will give you a brief overview. By definition Prednisone is, “an analogue of cortisone,used as an anti-inflammatory,immunosuppressive, and antineoplastic in the treatment of various diseases.” Put simply, Prednisone is a steroid. The body naturally makes low amounts of steroids it is also classified as hormones. This steroid is not the same type that well known people such as sports players or movie stars take. Prednisone should be a fast acting medication. It is used for countless illnesses arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, immune system disorders and additional illnesses.   download

There is a side effect overload when looking at Prednisone. The side effects range from irritating to utterly devastating. Some ‘mild’ side effects include: Abnormal Fat Distribution, Absence of Menstrual Periods, Acne, Disorder involving Personality Changes, Excessive Hairiness, Excessive Sweating, Feel Like Throwing Up, Moon Face, Visible Water Retention, and Weight Gain. More serious side effects include: Seizures, Infection, Low Amount of Calcium in the Blood, Thin Fragile Skin, and Anemia. Most people experience at least one side effect while on Prednisone. Every encounter with Prednisone is different. It is a difficult medication to be on. Many times it alters someone’s personality and how they look. Coping with side effects is a challenge. It is meant to be used short term, but that is not always the case. prednisone2

Check back this month for more Prednisone posts. I will be sharing my personal experience and talking about how to cope with Prednisone.

Just a Drop of Encouragement

Having an optimistic outlook is wonderful. It will not cure anything, but it helps us cope with many things. Surround yourself with people who are uplifting. It is okay to not be optimistic every second of everyday. Allow yourself to feel other emotions. It is okay to be angry, to be overwhelmed, to be stressed, to be sad, to be confused, and to be negative. It is okay to scream and cry. It is okay to have a pity party. Though it is okay, even healthy, do not allow yourself to stay in that negative state of mind. Once you are done with the negativity, pick up your boxing gloves and be ready to fight. To fight for your health, your happiness… To fight for you. You are worth fighting for. Your life is beautiful. You are a warrior. You are a survivor.

The Lord will provide for you emotionally, physically, and spiritually. He will provide just enough at times, this way you can move forward. He meets your ever need. The Lord has blessed you greatly. He has blessed you beyond your understanding and knowledge. He will continue to pour out his blessings in your life, for all of your days. You are flawed and facing unfair struggles but you are so blessed. You have countless things to be grateful for. Let gratitude fill your heart and mind. Allow your heart to sing with thanksgiving.