Diagnosing Lupus

There wasn’t a defining moment or even chapter in my life pointing to when Lupus invaded my body.  The pain began at age six. I quickly learned how to fake well. Overall ignoring the pain. It was mentioned off and on through the years to my pediatrician. No one was persistent with any of my symptoms or complaints. My first severe flare up was at nine years old. I had back to back ‘viruses’ blamed for every intense symptom. I was put on homebound, unable to go to school. The older I got the sicker I got. The more intense the pain. The more symptoms appeared.

I longed for a diagnosis. For someone to take me seriously. I was told countless times I was too young to be in so much pain, too young for a chronic illness. The first rheumatologist I saw did no testing, yet placed me on a medication. At first, I was relieved and full of hope. That is until I began having an allergic reaction. The doctor insisted on increasing the medication. I began having psycho seizures and stopped taking the medication. I saw a few other rheumatologists. Everyone eagerly promises to get to the bottom of my case at the first appointment then quickly becomes discouraged telling me they are clueless or there is nothing wrong with me.

One day I was discussing my frustrations with my cousin. She asked me if I had been tested for Lupus. I had no clue what Lupus was, but I had not been tested for it. She advised I check out the Lupus Foundation of America. Which of course, I did that evening and I was in awe. This illness was a perfect fit. It described every wacky symptom I had. From that point forward I did research on Lupus and spoke with the foundation several times learning as much as possible.

My symptoms mirror a perfect textbook case. In the beginning of my case, I believe due to my age, my labs were not always positive. I have had some of the top doctors on my case all of who believe firmly I have Lupus, but the way my body functions is different from most people. I am not normal by any standards.  After a long battle, I got my diagnosis. As soon as I received it I asked for it in writing. I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now.

I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now. Though, we frequently become frustrated still with my case and have different options I love my team of doctors. Having good doctors is a true treasure. Knowing that they will listen, are trustworthy, and will try to help makes things slightly less stressful.

I came home a few weeks early from college my first semester with the plan of getting things under control and then going away again the following semester. I found out I had severe double pyelonephritis (kidney infection). It lasted a little over four months. My body has not been the same since the infection.

I thought knowing the name to the monster reeking havoc in my body would be my big break though, the end of my major struggles. I thought I would get my life back.

It is also a battle keeping a diagnosis. Medication makes labs look pretty than the doctor begins to overthink.It seems when blood tests are postive they are never positive enough. When additional test records something alarming it is brushed off to the side. It feels like a game. One I don’t want to play. My symptoms equal the classic Lupus textbook case, but my labs do not always reflect this.

Diagnosing any autoimmune disorder is a complex task. Even in the medical field, people are not educated enough about autoimmune diseases- especially when it comes to Lupus. This is one reason awareness months are vital. Not only do those who suffer with the illness get support and educated, but doctors have new chances to become educated as well as people not directly affected by this particular illness.

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Encouragement

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.

Welcome December

I adore the Christmas season, it is absolutely magical. Beauty overflows all around from stunning lights to warm smiles to traditions and so much more. Christmas carols sweetly fill the air. The Christmas season brings joy as it reassures us gently that things will be okay. It helps us connect with our inner child reminding us of the wonderful Christmas memories. At the same time, it encourages us to move forward filling us with a hope like no other. It unites us with those we hold dear in our hearts. I cherish every aspect of Christmas.

Unfortunately chronic illness and the stressful demands that go with it does not take a holiday. The doctors appointments, treatment, and testing still must be done. Chronic illness tends to complicate things and get in the way of our joy during this season. It is easy to lose focus of the beauty in this season when we are consumed with emotion and pain. When the world seems to be caving in on us and everything seems to be falling apart. Chronic illness isolates us. We feel the effects more so this time of year. Finding a balance between doing things and resting becomes more difficult. For some, this season is depressing, reminding them of all they cannot do.

I hope you are able to take the time to rest and reflect this holiday season. Take to reflect about all the ways you have grown as an individual, all you have accomplished, all the blessings in your life, and everything you have overcome the past few months. You, my friend, have come so far. I am proud of you. You deserve to take time for yourself this busy season. You are an inspiration. Your story is breathtaking and laced with beauty along with encouragement it will change lives. I pray your strength is renewed. The Lord will bless you greatly this season, be open to all he has to offer for you.

I pray you would have a flare free Christmas season. I hope that despite your pain you are able to enjoy this season of blessing. Cherish every moment with those you hold dear to your heart. Hold onto the Christmas spirit. I pray that this season would bless you with little to no pain, plenty of spoons, memories, joy, and love. “It’s beginning to look a lot like Christmas.”

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. ❤

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!

Helping Other Despite Illness

Before stepping into my currently reality, I was able to serve others regularly. I was able to help at free dinners, do yard work, mission work, help out with a retreat, youth group, and a few other small things. I love to help. I figured I would only need to step back slightly for half a season due to my health (mainly due to getting answers and five operations in four years). However, that was not reality. My limitations weighted me down as I realized how I had been serving was no longer an option physically. The desire to be used burned with in as I pleaded with God to use me in any way. This is still something I am working through.

I adore running Chronically Hopeful, but there are days it doesn’t seem like enough (there is plenty of work, but I wanted to serve more).  Most of you know that right now I am leading with a few other women two online Bible studies. I have also joined the ministry team for my online Church.

When God lovely nudged my heart to lead Come With Me, I attempted to tell Him I was too busy. Can you guess who won that disagreement? He did hands down. One of the chapters we are reading this week is about Jesus’ presence in a storm, specifically when the disciples woke up Jesus in a panic followed by Jesus simply rebuking the storm.

We all encounter different trials in different seasons of life. Trials come so that God can discipline us, mold us, enable us to comfort others, and bring us closer to Him all while bringing glory to His name. The Bible calls us to carry one another’s burdens. Do you know of someone in a trial? Trials are demanding. Support is essential during these times.

Most people who follow Chronically Hopeful are chronically ill, so the remainder of this post is written with you in mind. How can I support someone when I am physically limited? It can be intimidating to offer help when you feel flawed. You might be turned down completely, I have been many times, but that’s okay. Offer whatever you have to God, “not enough becomes more than enough when we give it to God.”

Keep in mind the little things make a big difference. Everyone needs encouragement. The simplest notes of encouragement go a long ways. Use Facebook, e-mail, or snail mail. A short note with a Bible verse or a line or two are excellent ways to start. If you want a little more of a challenge write an entire letter and be personal.

Find an in person project that is short term and can accommodate you needs. This might be assisting in the nursey at church, being a greeter, making a meal for a family, or helping a child with homework in the neighborhood.

There is nothing like being in person, but at times illness traps us either keeping us homebound or sucking the energy (and spoons) out of us. Volunteer online. I know at first it is a strange concept. Support groups can use help with events or managing pages or responding to comments. Online Bible studies are another option.

Do you find it difficult to reach out and help others? Share your struggles. Share ways you have been successful in this.

 

Fruit of Brokenness

Today, I have a special treat for you, Melinda from  Fruit of Brokenness.

I had to accept it. But I didn’t want to. I had to accept a term I didn’t like for myself. It’s a label used when someone does something horrific like shoot a bunch of innocent people or drown their children. We use it to describe people who are so out of touch with reality or so far outside societal norms that they make us uncomfortable…

MENTALLY ILL.

If you met me, your first thought wouldn’t be “mentally ill.” I mean, I look like a normal 43-year-old mom of three kids… which means I can look a little crazy-frazzled at times, but I’m not the stereotypical unkempt, wild-eyed, roaming the streets talking to imaginary friends and enemies.

I suffer from Major Depressive Disorder. Sometimes my brain goes sideways.

Major or severe, depression is difficult to explain to someone who has never experienced it.

It’s like walking death. Everything that makes you-you carved out, leaving a gaping emptiness that can’t believe you ever really were anything, especially not anything good. You no longer enjoy your favorite things, or anything else. It’s impossible to believe things will get better; it’s impossible to believe that better is your normal.

Some of you may think that faith in God should make feeling like this impossible, that people who claim to be Christians who suffer depression or anxiety must be doing something wrong.

Their faith must not be strong enough.

They don’t pray or read the Bible enough.

They must have hidden sin.

While all these things can contribute to depression, depression is not just a spiritual issue. When churches approach people struggling with mental health issues as if is all only their fault, it is unhelpful at best, and can be dangerous.

Faith hasn’t cured me.

While a correct understanding of God and ourselves is vital for mental health, it doesn’t guarantee we won’t suffer from depression or anxiety.

Faith isn’t a magic cure-all. As with physical illness, mental illness can strike down believers and dog their steps.

As Paul related in 2 Corinthians 12, I haven’t been able to pray away my thorn. I have medication that is keeping the suicidal depression in check, but I still struggle with depression and anxiety and know it would be dangerous to quit taking my medication.

I have a chronic illness that requires physical, mental, emotional, and spiritual treatment. To attribute one too much importance than the others is unhelpful. There’s a glitch in my brain that affects my emotions, my perception of reality, and my ability to think clearly.

At its worst, I believe that I am beyond grace.

But there’s something awesome about God’s refusal to remove our thorns. Our weaknesses are an opportunity for His strength, and also His grace, to shine.

Paul knew this.

God can heal. God does heal. But God doesn’t always heal.

It’s not wrong to ask for healing, but we must choose to trust Him whether or not He sends it.

Whatever God allows or chooses in my life, I need to let Him be God. In and through my circumstances.

A huge thank you to Melinda for sharing her story and offering hope to others. Please check out Melinda’s blog and social media:

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