Shake it Off

Too many people are rude to Spoonies. 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 there way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 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.

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strange 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 phases like: 

But you don’t look sick

You need to be more positive

Have you tired…

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

Sending lots of spoons, prayers, and hugs. ❤

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!

Encouragement for You

 

Blessings are all around you though at times they might be hard to see. The fact that you woke up this beautiful morning is a blessing. You are a fighter with a sparkling and breathtaking personality. If you are able to walk on your own that is truly a blessing, but if you cannot and you have a walking device that is a blessing as well. Your senses are a blessing as well as all the amazing things your body accomplishes without you taking notice. Those that you hold dear to your heart are blessings so is every moment that you spend with them.

Not only have you received a great abundance of blessings but you have blessed other without even knowing it. You have been a blessing by welcoming a new person to your group of friends or your church. You have been a blessing by reaching out to a friend who was lonely. You were a blessing simply by being present and listening while someone was having a difficult time. Your life story and the story of how you have battled you illness has inspired many. It has given people hope, strength, courage, and peace. Many more people will be inspired by your story and blessed by your compassion. You have impacted more people than you are aware of, you matter to countless people more than you know.
Reflect on all the priceless blessings in your life and encourage someone in your life.

Lupus

“Yes, you need to know what Lupus is all about, but above all you need the strength and resourcefulness to battle with the wolf in its lair. The wolf will always be with you, but you can put a leash on it and make it heel.”

Lupus is known as the cruel mystery. People have heard of the illness before, but few know what it is and even fewer understand it. The way Lupus presents itself is as unique as our finger prints. Its complexity confuses medical professionals. Researches are working on formatting better testing, finding the cause of the illness, and developing better medication. Many aspects are highly controversial at this time such as causes of lupus and the diagnostic criteria.

So, what is Lupus? It is an autoimmune disorder in which the immune system is over active and confused. Those of us with Lupus are being attacked by our immune systems. It attacks anything from joints to skin to kidneys and everything in between. In a healthy person (or in someone who does not have an autoimmune disorder) the immune system fights off bacteria and viruses. It essentially works endlessly to keep you healthy.

If you don’t have Lupus I urge you to educate yourself, just a little. A little bit does go a long ways.

The search for a diagnosis seems like an endless and hopeless road. From my observations this is true when being diagnosed with any chronic illness, not just Lupus. The more I connect with those who are chronically ill, watch medical shows, or read spoonie stories I repetitively hear the horror of the individual searching for a medical answer. Many factors play into this inadequate testing, lack of knowledge in the medical field, bad doctors, the illness not progressed enough, ect..

If you are new to the Lupie World… Welcome. I know you’d rather not be a part of this ‘club’. I know that there are many emotions swarming you as you attempt to process everything. If you have been searching for answers to your symptoms, having a diagnosis is exciting and a relief in a way. On the other hand if you didn’t have any symptoms and no idea an illness had invaded your body I am sure this is utterly shocking. Where do you go from here? That is the million dollar question. A question that has a thousand answers but has no answer at all.

Allowing yourself to process that you have Lupus is important. I also advise that you educate yourself as much as possible about Lupus. When I got diagnosed I found the Lupus Foundation of America to be an excellent resource. Their webpage is great, in addition you can call them to ask questions. The Lupus Foundation also sent me information about treatments, living with Lupus, doctor information, and a magazine. I am so grateful that the Lupus foundation is the way it is. I cannot say thank you enough for the support and resources that I have received from them.

Life is never the same once you get a diagnosis. For better or worse things need to change. Most people need to adjust their life style, that is not saying that their life style was unhealthy. The life style of a healthy person is different then someone who lives with Lupus because the body needs different things. You will need to change your diet, how you exercise, and learn how to pace yourself. Of course, there is a good chance that you will need medication. Again I encourage you to do your homework. Educate yourself about the medication you are going to put in your body. Personally, I have a lot more confidence in trying a new medication when I know what to expect and the possible side effects.

Learning how to pace yourself is a huge challenge. Learning when you need to push a little harder and when you need to rest. Learning to rest is an obstacle for most people. Resting can feel like a waste of time. However, regardless of how you feel it is  a necessity. Your body needs to rest sometimes and that is okay. Resting can help avoid flare ups.

Lupus effects everything not just your body it effects your life and your emotional well being. It is essential to address the emotional roller coaster. Ignoring it and shoving it under the rug will only make things more difficult. It is tempting to shove the emotional aspect of Lupus under the rung most times, because there are so many other things demanding our attention. Depression and anxiety can be rooted in Lupus. Like any emotional illness sometimes depression or anxiety associated with Lupus can be treated with lifestyle changes other times medication needs to play a role.

Isolating yourself can be easy with any chronic illness. Many of us lose friends. It is difficult to keep in contact with people due to various symptoms, holding a conversation at times is utterly draining. Sometimes people avoid talking to others because of a rudely obnoxious lack of understanding. Even so, we need support. Isolation is not healthy for anyone. Having a support system is vital. In addition, I have found it helpful to find some support online through online support groups or pages an individual can like on Facebook.

I could go on for hours about Lupus and living with it. For now I will try to wrap it up so that this post doesn’t take too many spoons. I hope that you have found something in the post helpful. Welcome to the World of Lupus. You will be an amazing warrior who will demonstrate strength and courage daily. The road a head will be hard, but you have all the strength you need and you are never alone. Your story will give others the courage to keep fighting and to live their life.

How long did it take you to receive your diagnosis? What is the hardest thing about living with Lupus for you right now?

My favorite Lupus Resources:

http://www.lupus.org/

http://www.lupusny.org/

http://www.mollysfund.org/

Pages to like on Facebook:

World According to Lupus

Lupus and Me

Non- Lupus Resources:

http://restministries.com/

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

http://www.fightlikeagirlclub.com/

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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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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