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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Great Spoonie Volgs

YouTube is an interesting place. Allowing for entertainment, vlogging, and education. I never used Youtube much until I went away to college and needed to force myself to rest. Of course,  finding tips for living with a chronic illness and encouragement was a plus.

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Kelly Patricia is one of my favorite YouTubers and a huge inspiration. Kelly has a gift for encouraging others. She also has amazing faith. Kelly has an interesting mix of chronic illnesses and is still partly undiagnosed. Her story is extremely relatable, especially with the struggle of finding decent doctors. Some of her illnesses include IBD, Endometriosis, and Arthritis.

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Lets Talk IBD

Maggie has a great channel featuring Inflammatory Bowel Disease. She has a J-pouch and information on doing feeding tubs as well as coping tips for life with a chronic illness.

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Inflamed and Untamed

Sarah also has IBD and is an excellent advocate. She is blunt. She has battled many surgeries, hospital visits, and flares. She has partnered with the Chrons and Colitis Foundation. She has been on multiple IBD discussion panels and has a lot of knowledge about IBD.

 

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!

The Pain:IBD

The topic today is pain with IBD. I don’t like talking about my pain. On the other hand, it is a part of raising awareness. Physical pain is a part of my daily life. It has improved with medication. I was taught the pain scale at a young age. Zero being no pain at all and ten being the worse pain of your life which is usually equivalent to giving birth. On a good day, it is a five or six on the pain scale. An average day is an eight.

Simple things like eating can throw me into a flare. A bad day it’s a ten hands down. When it is that intense I know there is a 50% chance it is a flare and a 50 % chance that I am in big trouble (shutting down, a tear in the intestine, or something collapsed). The pain at times is so intense it sends me to my knees doubled over screaming bloody murder. Fighting back tears, I attempt to smile and go back to whatever I was doing before the wave of intense pain hit. The intensity is beyond words.

I’ve adjusted to the pain to a degree. However, there are times that the symptoms are nerve racking and the pain is too much to deal with. It is challenging being a college student and learning how to navigate daily life while being chronically ill. At times it feels as though the pain just becomes more intense. Each medication you try you pray is the miracle medication, your breakthrough medication so that you can go back to living even to a degree.

Coping with intense pain is a challenge. An individual needs to learn when it is time to call the doctor or head to the ER.  I have the habit of walking around the house a lot when the pain levels are high. Reading fiction, if I can focus really assists in coping with the pain. In addition, I talk with my mom or my friends who are chronically ill. Sometimes I journal prayers or just write. I also clean while listening to sermons or Youtube videos. I don’t sit still very well. Once in a while I will cave and watch television. I don’t love television. Personally, if I spend too much time watching it I feel like I have wasted time. I also go on Pinterest if it is late at night..

How do you cope with physical pain?

College Chatter #Liberty

Stability. It is something most people crave. A schedule to glide through day after day it might sound boring yet there is comfort in the familiar. When one has stability he or she can  plan to do things.

This is one of those things you don’t realize how comforting it was until it vanished. Stability takes on different meanings for a healthy person compared to someone who is chronically ill. Stability is one thing I currently do not have enough of.

This past May I was able to complete my Associates Degree at my local community college. I had been the first student to complete a degree online. By the way, if a school does not have an established online program I do not recommend going that route. By God’s amazing grace, I was able to thrive, however, there were times of extreme frustration that could have been easily avoided.

I had been hoping that my health would be more stable than it is currently. I am still struggling with abnormal POTS symptoms such as tremors, collapsing, and slurred speech. And of course, battling my immune system.

I am beyond thrilled to be continuing my education through Liberty University’s Online Program. There is a wealth of resources such as touring and an online library . The online program is split into different terms in each semester. There are eight weeks of two or three classes than eight weeks of a different set of classes. I am entering into week two of developmental psychology and contemporary worldviews.

In addition, to the stellar academic program and access to online chapel Liberty also offers an online hangout for online students to interact with one another. It is meant to be a cafe type setting. It  might not be ideal, but I will take what I can get at this point, which I am sure any spoonie would understand, as many feel like they are starving for social interaction.

As a new academic school year arises, I want to remind you, there is hope for every student, there is hope for everyone, even you. “People do their best making plans for their lives, but the Eternal guides each step.” Proverbs 16:9 The Voice In general, we are more capable than we give ourselves credit for. A little encouragement goes a lot farther than imagined and baby steps are actually giant leaps. 

Smart Relief Review

As most of you know, I damaged my hip. There isn’t much anyone can do overall, so I have looked into over the counter helps. Which is why I had invested in the Icy Hot Smart Relief. You have most likely seen the TV commercial for it.

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The product description found on Amazon includes:

“Smart Relief offers powerful, portable relief of back pain by bringing TENS technology to pain sufferers in a convenient, affordable way. FDA approved for relief of chronic pain associated with arthritis. TENS (short for Transcutaneous Electrical Nerve Stimulation) blocks the body’s pain signals by sending gentle electrical pulses along the nerve, which reach the brain before the pain signals do.  Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery,  Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery,

Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery,  Icy Hot Smart Relief Tens Therapy Starter Kit includes a control unit, 3V battery, reusable electrode pad and a user guide. Easy to use, no wires, no assembly, no doctor needed. The electrical pulses of Smart Relief are generated by a small, battery-powered device. It’s remarkably small – only half an inch thick and smaller than a credit card. It easily snaps onto an adhesive patch, and activates two small electrodes that pass the gentle electrical pulses through your skin and block your pain. It provides the same type of TENS relief you find in physical therapy facilities.”

I would not advise using this on an injury like my hip, specifically torn cartilage. However,  I do use this several times a day on my back. It does help in coping with the back pain. I have arthritis in my back, it isn’t straight, Lupus pain, disc issues, and possibly some Fibromyalgia.

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Like it says in the description it is super easy to use. I have had it over a month and have not needed to change the pad or battery. Sometimes it is delayed with turning on but to me, that isn’t a big deal. It is a nice touch to a flare day kit. Hopefully, this review helps you. Let me know your thoughts in the comments.

http://www.smartrelief.com/

Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

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I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

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It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

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All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

Ticks

Technically it is summer. I technically graduated the end of May with my associate degree from community college. I was the first student to complete a degree at this school completely online.  Currently, I am completing my very last course for my associate degree, statistics. I got the midterm out of the way this week. I have applied to an actual online college, just waiting to work out all the details for the fall semester.

Last weekend, I found out that I was bitten by a tick after the tick and I swelled up. By Tuesday morning, I had a decent fever. I began antibiotics as a precaution. I am not too far into the course, but so far it is much better than my typical antibiotic combination. I have been dealing with mild intestine pain and extra fatigue, that I think is related to the antibiotic. I have noticed an increase in joint pain after the bite. I have been given multiple warnings, by my doctors, that more symptoms can appear. I can either run into a flare of all illnesses or some forum of remission with the antibiotics.

Ticks carry more than just Limes Disease. Some include Anaplasmosis, Colorado tick fever, and Tularemia. For a complete list check http://www.cdc.gov/ticks/diseases/. It is essential to check for them and to remove them as soon as possible and properly. Some hospitals or medical centers want to test the tick so you can save it in a zip lock bag.

How to remove a tick

  1. “Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible.
  2. Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If this happens, remove the mouth-parts with tweezers. If you are unable to remove the mouth easily with clean tweezers, leave it alone and let the skin heal.
  3. After removing the tick, thoroughly clean the bite area and your hands with rubbing alcohol, an iodine scrub, or soap and water.
  4. Dispose of a live tick by submersing it in alcohol, placing it in a sealed bag/container, wrapping it tightly in tape, or flushing it down the toilet. Never crush a tick with your fingers.” (http://www.cdc.gov/ticks/removing_a_tick.html)

After a very brief google search, I came across https://www.lymedisease.org/, which seems to have additional practical information about Lymes Disease.

 

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.