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.

 

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!

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

I am honored to introduce to you a beautiful Lupus warrior. Aliccia is sharing an amazing post with us in honor of Lupus awareness month. Please share to help us raise awareness! Who better to tell you more about this courageous warrior than Aliccia herself. A huge thank you to Aliccia for sharing some of her story with us.

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Hi! I’m Aliccia and I’m 24 years old. I love tea, Japanese cars, Netflix, good books and cold weather. I’m a Californian currently living in Texas with one fur baby named Takata. I like smiling, and I am proudly one of Jehovah’s Witnesses. I’m obsessed with galaxies and I like to write on occasion.

 

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

By: Aliccia Rico

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My quest started in late 2015, on a cold November morning. I couldn’t take the pain and discomfort of being in my own body anymore. Selena Gomez had been all over the media talking about how she had a disease called Lupus, and I’d been battling some sort of illness that oddly sounded just like the one she’d been interviewed about. It seemed as though I’d been dropped off in the wilderness and told to make the best of the situation… Even though the joint pain and my hair falling out drove me crazy, almost to the point of a nervous breakdown. I’d joke about being a pro napper, but fourteen-hour stretches wouldn’t even aid the fatigue I felt on a daily basis… Let alone be normal hours of sleep. This wilderness I was in felt isolated from everything I thought I knew about myself, and those around me. Who could I trust with telling about this thing that has been plaguing me? Am I crazy?

I had been seeing a rheumatologist that never took my symptoms seriously. He had me on a Remicade infusion therapy that made me worse than I was before. It took me three infusion sessions and hundreds of dollars out of my own pocket to leave this office… He even laughed in my face when I was diagnosed with pleurisy at an urgent care. I’d fallen into a depression, even when I started seeing my current rheumatologist who diagnosed me as having “Lupus-Like Syndrome”, she doesn’t want to diagnose me with Lupus officially yet. The light at the end of the wilderness I was in got dimmer and dimmer. It felt as though the life was being slowly drained out of me, and I started giving up all hope that I had.

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I found myself months later standing in my restroom, my face wet with tears and red from inflammation. The frustration finally hit its peak the moment I got out of bed. My hands couldn’t open all the way, my hair lay in the sink in chunks. I couldn’t recognize who was staring back at me, the breath gone from my lungs. How did this happen? Why did this happen? I threw all the items on the counter onto the floor, screaming at the top of my lungs. I fell to the floor and started sobbing, trembling from confusion, sadness, and anger. I was angry at my body, angry at how much more my hands and arms hurt from my moment of insanity. All I wanted was for all of this to be over. I looked up to the ceiling, my breath catching in my throat as I try to clear my head. My phone had been ringing for the past five minutes, and I didn’t care.

 

Finally, I grabbed my phone as best as I could, seeing a familiar name across the screen. I unlock the phone, my breathing slowly getting back to a normal pattern. I fixated on the words on the screen, making me cry even more.

I don’t know how it feels,
but we’re in this together.
You’re not alone… I love you.

 

I closed my eyes and started praying. The light at the end of this wilderness had been in front of me all along! Years of frustration, agony, and depression began pouring out of me. I thanked my God, Jehovah, for giving me such an amazing person to help me through this hardship, and for never abandoning me. The more and more I poured my heart out, the more I felt the strength building in my bones. The thing about faith is that it’s based on trust, and trust is what I had to give to my God to endure the obstacles put in front of me. That day, my whole outlook on my disease changed in various ways. I put away the makeup that I would use to hide my skin, I chose to smile and not dwell on the pain or weaknesses that I had now become accustomed to.

 

I refused to stay complacent, depressed and have a “woe is me” attitude. I’d read stories online for support with this disease, but none of them were even remotely positive. The whole goal with living with any type of autoimmune disease is to find positive support and know that you’re not alone. I didn’t and don’t want special treatment, nor do I want to be a walking billboard of the typical “but I don’t look sick” movement. I want people to see me for who I am, not the unfortunate disease I have. Facing each day with a prayer, relying on the support of my spiritual family and friends and telling myself I could face the day helped me personally so much.

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In one of my favorite scriptures in the Bible, the Apostle Paul wrote, “So I take pleasure in weaknesses, in insults, in times of need, in persecutions and difficulties, for Christ. For when I am weak, then I am powerful.” (2 Corinthians 12:10) I take those words to heart because in my weaknesses, I have been the most powerful. While in a flare up, getting out of bed is an accomplishment, making tea is a milestone, getting dressed is a feat. My faith is stronger than my weaknesses and my illness, stronger than the anxiety and depression that I face, my faith gives me the strength to walk when I am so physically tired that I want to collapse, it gets me through each day.

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That day I had my breakdown, I was at my lowest point in the wilderness called Lupus. My faith brought me out of the wilderness to a brighter, clear road that showed me that yes, I do have an autoimmune disease, but I can get through these challenges I face (even as simple as opening a jar) no matter how hard they are. Everyone’s autoimmune disease quest is different, everyone copes with things differently and fights their battles in their own way. I admire those who are enduring chemotherapy, those who are mothers and fathers while having a form of autoimmune disease, those ones who need canes and wheelchairs. Your strength is admirable, and in no way could I ever make light of what others go through. We’re in this together, and we will get through it… Day by day.

 

Remember, when you are weak, you are powerful.

 

IV Fluids For POTS

Wow, I guess I don’t do health updates that often. I just noticed that it has been six months since my last POTS update.  I haven’t done many updates on my POTS because little progress has been made. Just an overview my pressure is still on the low side, heart rate most times insanely high, falling, near syncope, tremors/muscle spasms,  headaches, and brain fog. Later in the day is extremely difficult especially the closer I get to my Remicade infusion. I am thankful that I now have a rollator walker. It makes life easier after showers to safely get back to my room.

I have noticed the brain fog affecting me more cognitively lately, which adds to my frustration at times. There are times I have dyslexic tendencies while writing. I will switch or mix up letter. My spelling at times is worse. I tend to file that stuff under POTS.

I have had minimal success with POTS treatment. I have been on a tachycardia medication, but it is not consistently doing its job. Somedays even with the meds my heart rate is 160.  The steroids raise the blood pressure slightly but I sill come in at low 100- 115/ 50-85 ish.

Needless to say, my POTS treatment leaves my doctor frustrated, my family frustrated, and me frustrated. Falling every other day or more just isn’t acceptable anymore. I have been doing it off and on for three years now. My body is exhausted. I have injured a few things. My bones are not in a place that this is remotely safe. I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging

I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging laying out several creative options; medication changes, IV fluids, or teach me to accommodate my life. I was extremely respectful and compassionate as I always am with every medical professional (I remain that way even with the nasty ones). I thanked him for all he has done furthermore mentioning I am beyond thankful for the hospital. I find it important in the midsts of frustration to express that I am thankful and I understand I am complex but we need to work together so that I can have a better quality of life. Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him.

Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him. Even so, I could tell he was not sold on the idea of using IV fluids to treat my POTS, however, we had tried everything else. It seems too simple. Too basic. Thankfully, he allowed me to try which is all I could ask for.

You, need to learn how to be your own advocate. Speaking up doesn’t mean throwing a fit or being nasty. Speaking up can be done compassionately and with respect. It gives you a voice, an active part in your health, and respects your body. Never be afraid to ask questions or say no.

Today I got my first round of IV fluids. I also had my Remicade infusion, which I will do a separate post on. I was at the infusion center for four hours total and a four-hour round trip. I am expecting to notice a difference tomorrow.

So for anyone who is wondering, how can simple saline help POTS, I will gladly share. More research is needed, but the results to me are amazing and worth trying if your POTS doesn’t comply with normal treatment. Most of us are very dehydrated this, of course, helps with hydration. Additionally, it can help blood pressure, heart rate, decrease passing out or near passing out episodes, help the person stay upright, and possibly more. In my case, the hope is to also decrease shaking, improve brain fog, decrease infections (that could be related to dehydration), and decrease kidney stones.

Today I got about a litter and a half. Furthermore, I was told to keep up all fluids by mouth. Very rough estimation 50-60 ounces by mouth which are a slight decrease from a normal day. I will have two additional tiral runs of fluids next week at a center called Chronic Care. I am extremly hopeful with this treatment.

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.

 

 

 

Back to College: Organization

New Year. New Semester. School break has a habit of flying by. This is my second semester at Liberty University Online. Once again, I am taking twelve credits. The first eight-week term I am taking  Introduction to Christian Counseling and Psychology of Personality. The second term I have Philosophy and Physiological Psychology.

My plate is full, in my personal option. I have my Remicade infusion at least twice this semester, two follow-up appointments, and a new doctor visit. Additionally, as you know I assist in leading two Bible studies online as well as running a weekly event Bible Study Live. I teach Sunday School and assist as much as I can with the children Thursday evenings. Of course, I spe nd time talking to my friends, reading, time with my family, and working on Chronically Hopeful.

Even with being busy, I keep school as a priority. I have gotten school planning down to an art more or less.  Organization is key. I am thankful that my professor upload the syllabus the Wednesday before classes begin. This gives me plenty of time to do my insane planning. Once I have printed the syllabus and class schedule out I write down my two-week goals list.

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Just a free printable I found on Pinterest.

Around Sunday I write down in my planner what needs to be done each day. Currently, I have The Happy Planner. I decorate the pages with various colors, stickers, and Bible verses. From there, each night before bed I write everything on my white board so that I don’t forget to look in the planner for what needs to be done. It might seem a bit complex, but it works.

If you already have your textbooks for classes, I recommend at the very least scanning the first two chapters. Ideally, if time allows read these chapters, you will thank yourself later.

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Lastly, I want to share with you some Bible verse that I am praying over this semester.

“He has filled him with God’s Spirit, gifted him with wisdom, understanding, knowledge, and skills with a variety of crafts” Exodus 35:31

“The wise will pay attention to these words and will grow in learning, and the discerning will receive divine guidance” Proverbs 1:5

“Now to the God who can do so many awe-inspiring things, immeasurable things, things greater than we ever could ask or imagine through the power at work in us” Ephesians 3:20