My Prednisone Journey

I talk a lot about Prednisone on my blog but I never shared an overview of my whole relationship with the medication. It has been a roller coaster like for most people.

Before we dive in let me quickly give you a  brief overview. By definition Prednisone is, “an analogue of cortisone,used as an anti-inflammatory, suppressed the immune system, and in the treatment of various diseases.” Put simply, Prednisone is a steroid. The body naturally makes low amounts of steroids it is also classified as hormones. This steroid is not the same type that well known people such as sports players or movie stars take. Prednisone should be a fast acting medication. It is used for countless illnesses arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, immune system disorders and additional illnesses.  

I begun my journey with Prednisone in 2013. For the first few years I was off and on low doses of the medication but the time I spent off of it became shorter and shorter. At the time I began the medication there were a lot of undiagnosed illnesses.

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Right before I began steroids. 5’8” and under 100 pounds here.

 

 

 

During this time I ended up with a sever bladder infection that infected all three (yes you read correctly, all three) of my kidneys and threatened to hit the blood for four long months. Let me just say, after a four month long infection the body is never the same and neither are the illnesses. They did determine with the type of bacteria that the steroids indeed saved me from being in a more life treating position. I manged some how, to stay out of the hospital that entire time! Not sure I could handle a do over of that.

During this time my diagnosis of lupus became more concrete. Things were fine, which is a term I use loosely with a chronic illness, while I was on Prednisione. We took the proper precautions with my bone health and beginning a medication to take its place. Than we began to taper. All was well enough to be out of the hospital until I went to get my Benlysta infusion and was receiving my once a year bone infusion. I had a bad feeling as the Relcast infused. I began feeling a little unwell but the nurse assured me I was just anxious and completely fine. Except for the following morning I work up feeling funny, well, not really funny more like hit by a bus. The pain broke my pain scale. Movement hurt. I soon discovered I couldn’t get up and see straight. I was unable to eat or drink. Eventually I made it to Urgent Care who transported me to the hospital were I was admitted to the cardiac unit. Later on I was informed my liver enzymes were oddly high and over heard I may have POTS.

 

From that point forward tapering became a nightmare beyond my imagination. The following April I tapered down to 5 mg and a few weeks later landed admitted to the hospital again. This time I broke my liver enzyme record and most likely the record of the hospital my numbers reaching near 900s. I also get told I have UC. This time I could not eat for days. I was in the hospital for ten days. It was brutal.

The following January history repeats except for the fact that I ended up going to the hospital sooner for the pain so my enzymes were lower.

The doctor in charge of the taper shifts over time for various reasons. Each doctor made promises of figuring out how I could safely come off yet each has greatly failed. No one has made an honest attempt to help solve this problem therefore in the end contributing to its growth.

After a flare in March I was told I need to come off as soon as possible or my doctor will not continue caring for me. Such little guidance.

Tapering is overwhelming for a multitude of reasons. A gland shuts off while someone is on Prednisone. It must turn back on so that the person can stay alive but it takes time. The body goes through something like withdraw but it is rooted in the fact that the gland is not on and the body needs it to survive.  Tapering off too quickly can be deadly. Sending someone into an adrenaline crisis.

I have been in this taper cycle for five years. Each time I move a half a mg I feel as though I am dying with the intensity of pain. At times, it feels like the muscles are being torn apart and breaking. While the joints are being crushed. There are no accurate words to describe the abdominal pain. The fatigue with the process is hands down unique. Eating becomes a chore.

I began to feel completely hopeless of coming off the medication and figured I would settling for staying on 10 mg or 5 mg if possible. Anything so that I could actually live. I have with a lot of changes, hard work, persistence, and prayer made it lower for longer than I have in years but it is still an extreme struggle. I finally have hope by the grace of God to get off this medication. It is most ‘definitely a struggle daily and it is time to get some extra medical help (which is long over due) but I am making Prednisone progress. One day at a time, one sip at a time by God’s grace I am taking my life back. 

 

I will continue to blog about what is helping me on this journey but if you cannot wait to hear what it is please leave a comment with your e-mail address.

 

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Encouragement

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It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

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.

 

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!

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.

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. 🙂