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.

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.

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.

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!

An open letter to the doctor who told me to smile it’s not that bad

An open letter to the doctor who told me to smile it’s not that bad,

Flustered as always you entered the room, immediately questioning the pale blank expression on my face. I told you the pain was horrendous. It was making me dizzy and nauseated. You smiled at me telling me to smile it’s not that bad. It will pass with time. It is moments like these that I wish I could allow you to feel the intensity of the pain. Not to be mean but to allow you to understand that it is real. Furthermore, when I say it is terrible, I am not stretching the truth for sympathy.

You see me for fifteen minutes if that. You merely see me as a patient, perhaps even just a case number. On the other hand, there is much more to my identity than illness. I am trapped inside my body every second of every day. Each day I fabricate a smile. I focus nonstop on the beauty in my life. However, I should be able to be transparent with you. Expressing when I am in excruciating pain without obtaining a foolishly uneducated response. We should be able to discuss my symptoms and pain without me feeling guilty. Additionally, to construct a more efficient treatment plan.

A bit of compassion brings you the extra mile. Sadly,  many medical professionals lack this fundamental quality. Listening to your patients not just hearing them makes a difference.Offer support when we are facing a flare. Smile it’s not that bad or someone you know is worse does not help. Additionally, it is not comforting.

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.

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.

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.

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.

 

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.

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.