Wisdome from a Chronic Illness Warrior

I am excited to have a beautiful warrior from the Chronically Hopeful Facebook page guest blogging for us today! “Ellie is a 45 year old woman living in South Carolina.  She has battled Malignant Multiple Sclerosis with grace and courage. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.” Please check out her blog here.

 

She never wants to meet me for lunch. It’s the only time my health will mostly fully allow me to socialize outside the home. My friends know this. She never answers my phone calls. That email has been sitting there unread for days. He won’t answer my texts, but he’s all over social media with all those silly memes. The phone shouldn’t ring off the hook every time I call for an oil change appointment only for me to come home to 3 messages on the answering machine asking why I haven’t scheduled my service appointment.

 

There’s no reason I can see for me to be number 68 of 123 on hold for a customer service rep when I call to try and straighten out yet another medical bill. Yet I am. It’s only more aggravation added to a life already made extra stressful by multiple serious and chronic illnesses. Can’t people act right if they’re going to be a blip on my radar? Don’t I deal with enough already just fighting to live?

 

There’s something I’m forgetting in the throes of all these medical appointments, treatments and pain-  the world won’t stop spinning because I’m always in pain. It won’t even slow down a little. I have to jump up on the ride while it’s spinning, full turbo blast speed ahead. Sometimes there’s a kind passenger already onboard willing to help out, but not usually. I must adjust and remember that people in my life are more than just blips on my radar, even the people just passing through and the strangers I encounter.

 

In a life full of illness and pain and the extra stress and hardships they cause, people are everything. My city is in the midst of a big cold snap with high temperatures in the 30s. I was sitting outside the library to cool off because my body doesn’t regulate temperature the same way as “normal” people. There was a shirtless man in shorts walking by on the sidewalk. He was singing loudly until a police officer pulled up beside him in his cruiser. I wondered if there was going to be some kind of huge scene because the lyrics the man was singing were not the nicest ones.

 

There was no scene. The police officer talked to him quietly and then reached back in his cruiser and put a coat on the man. They then got in the car together like they were friends. I hope they went to a shelter if the man needed it.

 

Many years ago I was grocery shopping with my mom and saw a woman crying in the store. We asked if she was ok. She said yes and we didn’t press the issue, but it didn’t look like she was ok. We carried on with our shopping and rounded a corner and there was the woman full on sobbing sitting on the floor in the produce section. The store manager was on his knees beside her praying. It seemed to help her.

 

Many years later, this event is still having a profound impact on my life. I didn’t know religion in any way at the time. I was dead set against it, actually, and quite vocal about my lack of faith. Time has changed that, and recently I went back to this store to see if that manager was still there. He was. He too remembered the crying woman. I told him what an impact it had on me. The conversation I had with this manager will stay with me forever, and well, is too private to share, but it, and the crying lady were a huge stepping stone on my path to a faithful life.

 

Please remember that as we go through life with disease and pain that everyone is going through something. Illness that doesn’t go away does not make our pain different than anyone else’s. It may mean there’s less of a break, but pain is in the eye of the beholder, everyone feels it differently. Just like beauty, and that is a beautiful thing.

 

 

 

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Seriously, I Can’t Hear You

I can’t hear you. Could you please repeat that? No, I did not hear you come in. I am completely serious, though it is hard to believe at twenty-three. I previously blogged at my hearing loss mentioning a couple unstable theories. Shortly after, receiving my HHT diagnosis, I was told I needed my hearing checked. The doctor who relayed the message was skeptical because she had been on my case for a brief amount of time and was unaware that I had issues hearing. To be fair, the doctor who ordered it was never told either. Simply, because it never came up, furthermore, it did not seem relevant

I went through an intense hearing test while I was having no trouble hearing. I found out a few days later that I have extremly mild bilateral hearing loss. However, was not mentioned at the appointment, I am guessing because it is so minor. There isn’t anything to do, but it is a great thing to know.

If you went undiagnosed for any significant amount of time you understand the value of a reason for dictating symptoms. Though there are an overwhelming amount of questions at times without answers, having a name to the monster helps. The name doesn’t not by any means make the road any easier it just makes someone feel validated in their bodies rebellion.

 

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.

 

Bazzar Symptoms

I deal with plenty of bazaar symptoms regularly. I have decided to begin blogging about them occasionally. I don’t know the origin of the majority of them. I don’t have much advice either. So why share? you might ask. My hope is that someone else who encounters anything similar will feel less alone.

My ears are small inside. I encounter a lack of hearing at times. Other times hearing loss in one or both ears. This evening it is both ears. There is a decent amount of pressure at times. I am twenty-three and frequently need to ask others to speak up.

I remember the first time it happened. I was in high school. I freaked out completely, thinking I was going deaf or something had happened to my ear drum. At the time, I was seeing an ENT. When the doctor looked there was nothing noteworthy. Other than my ears are tiny like I said. Therefore, wax will slip in front of the ear drum.

Sometimes pulling on the ear or pushing on it helps. Other times it is a waiting game for hearing to return. No other theories have been brought up with this issue. It is not a major issue at this point in time. However, it is frustrating and distracting. At the same time, it makes me thankful for my hearing.

 

 

 

2016 Major Moments

Another Christmas races through our lives. The season always slips by in a blink of an eye. Shortly after another year kisses us goodbye. This year is elegantly coming to a close and we are able to once more reflect on the moments which have shaped the year. Each year shapes our lives and our character. Each year we learn, grow, are filled with love and joy, and shed many tears.

This year began with a shaky start for me. A few short days after the new year, I was admitted to the hospital due to extreme pain levels. They admitted me to the surgery floor fearing my intestines collapsed or did something funky. I had two Gastros on my case who bickered back and forth accomplishing nothing. I meet another Gastro while admitted who became a permanent asset to my medical team. We tweaked my treatment plan.

My Ulcerative Colitis continued to flare. Sending me to the ER after over eight hours of vomiting. Steroid doses were up and down. At the same time, I began my first online Bible study. Featuring the book I Know His Name by Wendy Blight. I honestly, I little hope for learning anything from the study and went into it with some doubt due to bad experiences in the past. However, God deeply blessed me beyond my dreams. He used that study to change my life forever. Shortly after, I joined God-Living Girls a support group for women with chronic illness and chronic pain.

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Shortly after, I joined God-Living Girls a support group for women with chronic illness and chronic pain. I adore this support group. There are many thriving ministries online. I encourage women of all ages to check it out here God Living Girls.

 

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Sadie watching a sermon from our Online Chruch 

 

 

In April I was nominated for the Psychology honor society, better known as Psi Chi. Then in May I graduated with my Associate degree. Shortly after, I began leading Online Bible Study. In addition, assisting in online ministry.  I mainly assist in running two Bible Studies and do a Bible Study Live event about once a week.

I began pursuing my bachelor’s degree at Liberty University Online in August. I adore the online program here. To my surprise, I have thrived in the program beyond my dreams. I have access to tutoring, an advisor, and the library. Additionally, I began assisting with Sunday school at church. I teach the teens, however, if I don’t have kids, I assist with the little ones. They always have me laughing.

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My Gastro retired. So I began seeing another new Gastro. I am grateful this one is compassionate and well educated. We began paperwork for Remicade over the fall.

Then in October, I had another kidney infection along with stones. I also got to have a lovely weekend with my friend and visit Liberty. The trip to Liberty was one of the highlights of my year.

In November, I stopped 6 MP and began Remicade. A difficult transition. I have done two doses. It is an adjustment period.

December my friend and her family visited.(Another highlight!) While I was away with my friend I began thinking more about becoming more independent. I decided it was time to apply for a service dog.  I also got approval to move forward in the service dog process. I just began the process so I have a long way to go but it is progress and I am excited!

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The Problem of the Semester

Introducing the problem of the semester. Each semester I seem to run into at least one big obstacle with my health. Lupus doesn’t think college is eventful enough.

After coming home from the hospital, I collapsed, at least, four times from POTS landing on my right hip. Needless to say, I was experiencing hip pain. It was determined that I didn’t break anything. Even so, the pain was getting worse. I knew there was something wrong.The concern became that it was possible my body wasn’t providing enough blood to the bones in my hip. That could cause a bone or tissue to die. My doctor sent me for an MRI which revealed a growth along with some torn cartilage. Now I am waiting to see a specialist to see what the next step will be. Waiting is one of the most challenging things. Not being able to do much for the pain and not knowing what they will suggest to do for the issue at hand.

With Lupus, there is hardly ever a dull moment. I think about my friends with Lupus and everything they go through because of this illness. It can feel like you are just overcoming one obstacle and boom there is another. At times, it is difficult to process everything that is happening. We get use to dealing with certain things like blood work, but additional obstacles don’t become easy to deal with.It threatens our Lupus normal and can cause stress. This is one reason it is vital to have a support system not just of encouraging people but also of others who are dealing with chronic illness. Those  of us with chronic illness have a different perspective and provide a different element of support to one another.

At times, people tell us how we should react to an obstacle or tell us the ‘magic’ cure. If you are also facing a health obstacle it’s okay to feel emotional or to feel fine. Your emotions are not wrong. You have enough strength for whatever you are going through. Wishing you all a wonderful afternoon. 🙂

 

Holiday Outing Tips

Being chronically ill, an individual gets stuck at home often. Going out, at least for me, is just for a doctor appointment, church, or food shopping. Therefore, going out or having friends over is extremely exciting. It is extremely draining as well.

It is best to go into spoon saving mode when attending holiday events. The night before getting everything together, the more you can accomplish the night before the better. Pick out your outfit, anything you need to do your hair and makeup. I take everything I will need out. My bag is packed, shoes on a shelf (so I don’t need to bend), socks unfolded, and braces in place.

If you are going out, how long will you be out?

What medical supplies will you need to bring? No matter where I go, I always bring a makeup bag packed with things I need. Personally, when going out I bring my inhaler, icy hot, chap stick, nausea medication, Benadryl, and any medication I take as needed. I also put my daily pills in an old pill bottle. My oversized water bottle goes everywhere with me. Sometimes, I carry tea bags as well. You might consider bringing hand warmers, gloves, and braces. Depending on your illness think about bringing extra clothing and toilet paper (some public restrooms run out).

Consider how long the car ride will be. When my fingers aren’t swollen I bring my crocheting stuff. I always have a blanket as well.

Make sure there is food that is okay for you. Personally, I do not drink alcohol. If  you are of drinking age it is so important to discuss this with your doctor. It is great to try to be as normal as possible, but it is not worth flaring for the remainder of the season. It alone can cause flares or interact with medication.

I hope you find this post helpful and that you are able to go out and have fun this holiday season.