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.

 

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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.

 

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.

Christmas Blues

It is the most wonderful time of the year… or is it just another blue Christmas? Chronic illness and the holiday season can be conflicting. Yes, there is so much beauty as well as love in this season. However, it can also be a reminder of life B.C.I. (before chronic illness). The traditions we can no longer take part of, the foods we can no longer enjoy, and the friends who have left us.

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My love for Christmas has always been known. By October, I am ready to begin decorating and listening to Christmas music. Throughout the fall, the excitement builds with every step closer to the Holiday season. This is the first year I am not excited about this beautiful season. I find my lack of excitement frustrating. I don’t feel like me.

Of course, medication change has a role in this for me emotionally. The saga continues as I taper off of the lovely Prednisone. It has been a little over 20 days since my taper. My body is furious. I have begun passing kidney stones again, which landed me in urgent care. I have been put on a miserable antibiotic. Additionally, my IBD is flaring along with my lupus.  Not to mention that finals are right around the corner. I know logically why I feel the way I do, but logic doesn’t ease the frustration.

I know I am not the only person playing tug a war with emotions this Holiday season. It can be more difficult to cope will illness. I am attempting to fake it till I make it, going through the motions. Praying somewhere along the way the excitement will kick in and I will feel the spirit of Christmas once again. I have begun decorating my room though it is a struggle with POTS. I become dizzy as I raise my arms to hang up snowflakes. My cats are inspirationally excited about the Christmas season.

How do you combat Christmas blues?

Families are messy to say the least. Somehow we learn to function in the dysfunction and chaos. Whether we like it or not our families influence us in countless ways and determine various aspects of our lives. We love them and hate them. Regardless they are a part of who we are at the core.

My family is not resilient to typical family chaos. We are just as flawed, if not more than the average family. Some days I ask God what he was thinking when he paired us together, our personalities are extraordinarily unique. That when God reminds me of the beauty woven within my family.

I am thankful for my family, who have sustained me and walked with me on my journey (some didn’t have a choice). I never went through typical teen rebellion stage, but I did take my family for grant and the fact that they have always been there for me. Through my short time away at school and the decline of my health, I have learned to truly cherish those I love. Yes, they might be embarrassing at times, but no matter what they are my family; a blessing from the Lord.

Picking A College

Most of you know that I’m a college student. My academics are important to me. Lately i have been struggling to keep my head above water in regards to my school work. My abdominal pain has been getting worse daily. It has taken over my life.

I have always enjoyed school over all. Of course there are days I don’t love it and subjects I don’t like.

Preparing for college was a challenge due to my illness. I began my search early but I wish I started sooner. I choose a college three hours away which was not ideal. I had e expected to be able to go to school full time and have a job. I thought once i began medication i would improve quickly. I had unrealistic expectations. I began school two months,after my fifth surgery. I don’t recommend this.

My parents add I soon realize me going to school so far,away want a good idea. My heath got worse. But i was determined to finish the semester. Over Thanksgiving break I had blood in my urine…game over. I knew I couldn’t go back to school. I completed my first semester online. My plan was to get better over break then go away to school again closer to home. However, with a sever double kidney infection that was not an option. Recently I scheduled my classes with the ‘local’  (which is an hour away) community college. I tired to be happy and excited about the change. I greeted the semester with a good attitude and an open mind. The semester busted at the seams with obstacles. I had to receive antibiotics though an IV, a bladder scope, and a few dozen kidney stones. The rheumatologist I had been seeing took me off of my Lupus medications, which complicated things.

I had been able to get ahead with my classes. The flexibility with online learning is great. I completed the semester with a 3.5 GPA. I had been told that I am not a smart person through out my school career. I never expected to do this well in college. Last semester I ended up with a 4.0 GPA which I have mentioned before mainly because I am so surprised by it.

Entering college is scary and ecciting.  Picking a college and filling out the paper work can be stressful. It is a challenge to find the prefect school for you. I don’t know about you but I don’t know how I’ll feel five minutes from not never mind in a few months to a few years. I recommend beginning your college search as early as you can, this way you will have plenty of time to consider your options and it will be less stressful.

The biggest question is: is it realistic to live on campus (if that’s one of your dreams). It is best to discuss this with whoever helps take care of you, anyone in your support system, a school counselor, and your doctor. You need to make sure your health is stable enough to make that huge jump to living on a college campus. I would recommend either picking a college fairly close to home or near relatives or a close family friend. This way if you end up in the emergency room, are going for extensive testing, or need support someone you know well and trust fully is there for you.

In addition to being close to someone who knows your medical history and you trust there are many other factors to consider when choosing a college.

Some questions to ponder while searching for what college you will attend:

  • Consider what the area is like compared to wear you live. Is it city, suburban, or rural? Will living in the city for example affect your health? Personally I cannot live in the city due to the air and noise.
  • How close is the nearest hospital? What type of a reputation does it have?
  • Will you need to switch doctors? (If so, it is best you do research on what options you have for a new doctor. You want to be sure they know what they are doing and can properly care for you.)
  • Where is the pharmacy?
  • How long can I expect to have insurance coverage? (For example, up to what age am I covered? Do I need to be a full time student to receive or “get” full coverage?
  • Is there a nurse or licensed practitioner?
  • How big is the campus?
  • Where will you be living? Is the dorm building handicap accessible?
  • How many people will you need to share a room and a bathroom with?
  • Whats the food like? Would your body be okay with what the serve?

Let me know your thoughts in the comments! If you are in college currently or have already graduated please share other things to consider when picking a college.