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.

Migraine 101

 

 

The word migraine is a familiar one to most yet there is a lot of confusion surrounding them. Migraines are anything but straightforward. In fact, many medical professionals debate over the definition, cause, and treatment.

The basic foundation of the definition of a migraine according to Webster dictionary is a condition marked by recurring moderate to severe headache with throbbing pain that usually lasts from four hours to three days, typically begins on one side of the head but may spread to both sides, is often accompanied by a variety of symptoms. Some people believe that it is a genetic neurological disease.

Of course, there can be other causes in addition to genetics such as stress, trauma, or chronic illness. Many times the cause of a migraine disorder is unknown.

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There are a total of four stages of a migraine, but not everyone encounters each stage which is prodrome, aura, headache, and post-drome. First, prodrome occurs one or two days before a migraine. Many people do not experience aura which is nervous system symptoms before or during a migraine. The stage headache also is known as the attack is an actual migraine which can last anywhere from 4 hours to 72 hours if untreated according to Mayo Clinic. Lastly, post-drome occurs afterward for around 24 hours.

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Being able to recognize the signs of a migraine are essential. A migraine can be accompanied by an array of symptoms.

Some symptoms include

  • extreme pain,
  • light smell or sound sensitivity
  • nausea
  • vomiting
  • pain on one side
  • pain down the neck
  • vision changes
  • numbness
  • Vertigo
  • Feeling lightheaded or dizzy
  • Puffy eyelid
  • Difficulty concentrating
  • Fatigue
  • Diarrhea – constipation
  • Mood changes
  • Food cravings
  • Hives
  • Fever

Symptoms of a migraine are vastly different for every person. Furthermore, symptoms may vary different episodes. Likewise, triggers are unique to everyone.

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Some triggers include but are not limited to

  • Stress
  • Hormonal Changes
  • Weather
  • Foods such as aged cheeses, salty foods and processed foods
  • Skipping Meals
  • Dehydration
  • Lack of Sleep
  • Additives in foods like MSG
  • Drinks like alcohol or caffeine
  • Sensory stimuli. Bright lights and sun glare can induce migraines, as can loud sounds. Strong smells — including perfume, or paint thinner

 

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The majority of the time migraines are diagnosed on a clinical exam and from discussing episodes with a physician. Additionally, they will consider medical history, symptoms, and perform a neurological examination. Other medical tests may be ordered to rule out another illness or if the pain seems unreasonably severe or is unusual.

 

 

The Spirit In Me: Online Church

Online women’s ministry has been a part of my life for a while now. It has opened many doors that allow me to serve Christ even though I am limited physically. I have seen it change lives of many women from all walks of life.

I am excited to share an online church group which I am sure you will

“We are a ministry dedicated to provided church and prayer specifically for people like you with chronic illness and your loved ones as well as people who just need more of Jesus. If you know people who are hurting, who are unable or afraid to go to church, this could be for them. Please share with others!

I have been providing this to people for two years now, and have been receiving requests to copy church into other groups. This makes it a available to everyone, but gives privacy and respect, by keeping it exclusive.

We are unusual as we do not have “live” church, but have a series of posts, that center around the themes of the sermon and devotion, along with opening worship. Everything is designed to be meaningful and encouraging, without being legalistic or judging. Our God is one of mercy, grace and abounding love, and we come to worship and be fed.

So scroll down, soak it up, you can come and go as you please. Feel free to comment and share as you are led. Please keep in mind that for some, this is the only church type interaction they are getting. We are so blessed to have you with us!” – Kim

This ministry was founded specifically for those with chronic illness and your loved ones. We are expanding it and it is open to all who would like to join; those who have a mental illness, single mamas, those feel broken at times, want more time with Jesus, or want more fellowship. This is a ministry of Renewed Minds Online and Chronically Hopeful and will be open all week. We would be honored if you would join us!

When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

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.