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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Don’t Judge a Book By It’s Cover

Don’t judge a book by it’s cover that is what we have been told. Yet sometimes even once we have dived in and are reading there is a drastic change we would never expect in our wildest dreams. At times, we believe whole heartily that we trust a person and the individual is extremely different than reality. Perhaps the person put on a front and we never expect them to betray us when we needed them most. Other times something tragic happens and the person we cherished dearly pushes us away.

Most can recall a time something like this has happened out of the blue. Reason or no reason it is devastating and heart wrenching. On one hand we might like to go back to how things were on the other we might hunger for revenge. Emotions race through us consuming us and dictating our actions or attitude.

Healing from a loss of a friendship is not an easy road. Furthermore, it is a road traveled too often by those who have a chronic illness but that fact does not make it easier. Coping in a healthy way as we move forward is vital.

The truth can hurt. To be completely honest the only One who is completely unwavering is the Lord. He cannot betray us. He will never turn His back on His children. Moreover, His love for His children is too great to put into words. Regardless of what we do He is still there.

Those words of reassurance might bring some comfort at times but there may be times those words offer no comfort at all. To be honest that is perfectly okay. It is okay to not be okay and that our hearts have been shattered in this tragedy because that is not how God intended humans to interact. He intended us to live in community, encouraging one another, and challenging each other to grow closer to Him. However, we live in a fallen world with too much sin truthfully.

My heart breaks for you if you can relate to these words. I do not know when nor how but I promise it will be okay. By God’s grace you my sweet friend will overcome the heartbreak. God is close to the broken hearted, the rejected, and uninvited.  Run towards your loving Savior who will heal your broken heart.

Do not isolate yourself (though it may be tempted and I understand that). A reminder once more, the Lord created us for community just not everyone uplifts us the way they should. Those in our lives should encourage us to thrive and grow in Christ not be a source of stress.Call that person you can always count on for prayer.  During this valley of sorrow practice some self care. You have been though an emotional combat and must recover properly.

Lastly, be certain to pour your heart out to Jesus because He is always listening. Write out your prayers to Him. Rest assured He holds all your tears in a bottle. He understands the heartbreak and devastation. Pick up that devotional you have been meaning to read. Start that Christian book that is under a pile of junk on the counter. Listen to a pod cast or sermon. Take the time to begin studying that book of the Bible you have been meaning to. Join an online Bible study. Do anything to immerse yourself in His Word and His love. Guard your heart. You have victory in Jesus Christ over this.

 

 

Jehovah Jireh (God Our Provider),

We surrender to Your compassionate hand the individual who has deeply hurt us. Allow them to be redeemed by Your grace.

Our hearts have been shattered in ways we never imagined. Things will never be the same. Even though it hurts, Lord Jesus, we will praise You. We will always unending sing Your mighty praise. We are confident that You will heal our hearts. Confident that You will provide and deeply bless us beyond our dreams. Fill us up with You, Jesus. Drench us in Your love. Comfort us. May we grow closer to You.Allow this season of sorrow to bring honor and glory some how to Your precious name. We love You.

Amen

Mast Cell Activation: An Overview

Tightening in the throat that increases by the second. The grip, like no other. Strangling. Less air pushes through.  Constricting more. Will the airways close. Focus on breathing. On finding the —A wave of dizziness emerges as less air pretenses it’s self… Focus on finding the medication.

Near anaphylaxis. It has become a common occurrence although it has not yet become normal to work though. Mast Cell Activation Syndrome is one of a few new diagnosis I recently acquired.

I had hear of the disease in passing, but it was the furthest thing from my mind. When my POTS doctor asked if I had a lot of allergies I replied no thinking everyone has a list of allergies. My theory was everyone has allergies they are just unaware, which of course, is not true. Eventually, I made my way to an allergist and got conformation of my diagnosis. Mast Cell Activation Syndrome.

Defining Mast Cell Briefly

Mast cell are a vital part to our blood as they assist in the function of the immune system. They are found in many locations throughout the body. “Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. ”

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Triggers

For someone with mast cell there are various triggers. Basically, anything at a given moment can trigger us. Many times I have been okay with a food or cream for months or year than react to it. Some triggers include Heat, cold or sudden temperature changes, Stress: emotional, physical, including pain, or environmental (i.e., weather changes, pollution, pollen, pet dander, etc.), exercise, fatigue, food or beverages, including alcohol, medications,  natural odors, chemical odors, perfumes and scents venom infections (viral, bacterial or fungal), and Sun. Additionally someone with mast cell can have a reaction to themselves which is the strangest concept in my option or idiopathic reactions.

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Some Symptoms

Symptoms are unique for everyone. They can be altered depending on the day or the trigger. There are many symptoms with Mast Cell.

An overview of some of the many symptoms:

  • Gastrointestinal symptoms such as nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption
  • Low blood pressure
  • Fatigue
  • Itching, flushing, hives
  • Episodes of fainting or dizziness
  • Bone pain
  • Brain fog
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart
  • Anaphylaxis

Overlapping Illness

Most individuals have an overlapping illness or a few. It is common to have POTS (or Hyper POTS) and Ehlers–Danlos syndrome. Additionally, some of these individuals have an autoimmune disease.

Treatment

Treating mast cell of course comes with challenges. The biggest challenge is that many people have a lot of medication allergies. One of the goals is to calm down the mast cells. Additionally there needs to be a plan when one reacts. Some people have continuous symptoms such as pain. Than they also deal with a massive amount of sever symptoms when encountering a trigger. Due to this there are various elements of the treatment plan.  Almost all people start on two over the counter medications Zyrtec and Xanax. These medications should calm cells. Moreover, other over the counter and/ or prescriptions are used to treat it.

Getting Educated and Finding Support

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Photo by Sharon McCutcheon on Pexels.com

Like previously mentioned there are times we encounter a trigger which can result in some symptoms like itching or nausea to life threading symptoms such as Anaplhyaxis. Again treatments vary. Some use benadryl or an Epi Pen or both.

If you or a loved one have mast cell or suspected mast cell please educate yourself as much as possible because it can (and most likely will) save your life. Be sure to connect with others with this illness. Personally, I am a huge fan of Facebook support groups and there are some fabulous ones for Mast Cell. My favorite Mast Cell Facebook Support Group can be found here Mast Cell Activation Syndrome Support (MCAS only). This group has the best resources I have found to date. It also makes it easy to get educated and find support.

Need some extra information? Check out these wonderful resources: 

  • Mast Cell Research: http://mastcellresearch.com/
  • The Mastocytosis Society https://tmsforacure.org/
  • Mast Cell Activation Syndrome: The Immune System Gone Wrong https://www.drlam.com/blog/mast-cell-activation-syndrome-the-immune-system-gone-wrong/32795/
  • Mast Cell Activation Disorder | Diagnosis Discussionhttps://www.youtube.com/watch?v=iYje4mmh5mk

    Living with EDS: Mast Cell Activation Syndrome

    https://www.youtube.com/watch?v=qv40McIWocU

 

 

What are your tips for living with Mast Cell?

*Please note this is a very brief overview of this disease. Many medical professionals are not fully educated. Please subscribe to be notified when the next mast cell post comes out.

Uncertainty in Fibromyalgia and Chronic Illness

Today we have a wonderful and eye opening post from Cassie Creley.

Cassie Creley lives in the Pacific Northwest and loves writing. Dealing with multiple health conditions including cancer, fibromyalgia, Dysautonomia, and asthma have taught her that God’s joy is available even in our worse struggles. She blogs about creativity, faith, and living with chronic illness at http://cassiecreley.com.

 

 

You would expect a diagnosis to bring some certainty to your life. But when the diagnosis you receive is for a chronic illness that is currently incurable, that is not often the case. It took me some time to realize this. At first, I was blindsided by the amount of uncertainty that took up residence in my life due to my health.

 

Being diagnosed with a chronic illness puts us in a constant state of uncertainty. This uncertainty is one of the unexpected and most difficult side effects I’ve been dealing with since being diagnosed with fibromyalgia. Before getting diagnosed, as my health declined, there was always the assumption in the back of my mind that things would get better, I would get well, and life would continue as normal. But the diagnoses have just kept coming in the last two years: thyroid cancer, Dysautonomia, CFIDS, in addition to the asthma and allergies I was diagnosed with early on in life.

 

Unless you’ve experienced fibromyalgia, Dysautonomia, or other chronic illnesses, it’s hard to imagine the daily impact. I find myself wishing someone had warned me, which is just the same as wishing there was no such thing as uncertainty!

 

My body and my mind have become sources of uncertainty. I’m normally a very organized and dependable person. I could be counted on to show up when I said I would, to have a project done by deadline. Now, I often have to cancel last minute because there’s no telling when my body will suddenly decide it’s done for the day. I also used to thrive on having a schedule and routine. My symptoms and lack of energy throw my entire day into chaos, making it nearly impossible to predict when I’ll be able to accomplish even simple tasks.

 

Perhaps most frustrating of all is the uncertainty I now experience when it comes to my mind. I used to easily memorize information, but now struggle to find words or put them in the right order when speaking. When proofreading my writing, I’ll often find that I’ve inexplicably typed the wrong word. This is all part of the infamous brain fog of fibromyalgia. It makes me uncomfortable when talking with even close friends, let alone people I don’t know well, and impacts my confidence as a writer and my self esteem in general.

 

In spite of all this (and maybe partially because of it) I’m a huge believer in silver linings. What, you might ask, could possibly be a silver lining to so much uncertainty?

 

Maybe, if we can harness our uncertainty, we can let it force us to realize that uncertainty is a natural part of life.

 

The world teaches us that we should have every step of our lives planned out. And part of me really likes that. I want to know all the details. I want to be prepared. But is this healthy?

 

This expectation starts young. I didn’t realize just how profound an impact it has until I was a high school leader at my church for a few years. Students were expected to know where they wanted to go to college and what career path they would follow well before they graduated. I could see how much pressure and stress this put on the students. And the expectations continue throughout life—people expect you to know who you’ll marry, how many kids you’ll have, what you’ll do every 5 years of your life, when you’ll retire, etc., etc. If you don’t have everything planned, people seem to think there is something wrong with you.

 

Huh. Kind of makes you realized that certainty, or at least the illusion of certainty, can be exhausting too. Probably because pretending we’re in control of everything isn’t the way God designed us to live. In fact, the book of James has some pretty harsh words about acting like we know everything:

 

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’ As it is, you boast in your arrogant schemes. All such boasting is evil.” (James 4:13-16 NIV)

 

Pride creeps in (aka boasting) when we become focused on our will and our need to control every aspect of our lives. Instead, we’re called to recognize our dependence on God’s will and surrender our uncertainty to His sovereign will and trustworthy love.

 

Maybe our unique understanding of uncertainty, brought about by chronic illness, will allow us to extend grace to others because we won’t expect people to have everything figured out.

 

Maybe we can extend that same grace to ourselves. Wouldn’t that be a relief? To know we’re not expected to have everything together at all times?

 

I’m realizing that uncertainty is part of being human. If we take the time to recognize the normalcy of uncertainty, we can also recognize that our faith makes uncertainty okay.

 

We don’t have to be uncertain about God. We’re assured in the Bible of His unchanging nature. (Hebrews 13:8) We’re assured of his presence. (Matthew 28:20) We’re assured of his unchanging love: “Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.” (Psalm 143:8 NIV)

 

The uncertainty of chronic illness starts to look smaller the more we focus on God’s certainty. I’m not saying it’s easy. But it’s possible. Some days will be harder than others. But the flip side of knowing some days will be harder is that we can rest assured that some days will be easier.

 

Once we stop running from uncertainty, we can embrace the fact that there is a positive side of not knowing everything. I’m reminded of a quote by Luci Swindoll, one of my favorites that I recently rediscovered: “Lord…may I relish the joy of knowing you are full of wonderful surprises.” Even in the midst of chronic illness or whatever life throws our way, let us never forget that God can certainly bring about beautiful things that are more than we ask or imagine.

 

Even in the midst of life’s uncertainty, let us never forget that God can certainly

bring about beautiful things!

What To Do When You Can’t Find Thankful…

Gratitude is not always second nature. There are days when it seems all hope is lost. One of those everything that could go wrong did go wrong type of a day and rock bottom turned out to be a few feet lower than you thought.

Finding God’s grace in struggles can be a challenge but it is possible. There are times you feel like you cannot find thankfulness. Regardless how devastating the struggle or if you are just drawing a blank there is always something to be thankful for.

There are many places you can look to count things to be thankful for. Go to your facebook news feed and rejoice with those who are rejoicing. Did someones daughter take their first step? Did someones son graduate high school? Thank God for the family and the blessing. Still in need of more ideas? Head to the Bible. Thank God for the miracles, the stories told, the lessons learned, who He is, and His promises.

Worship music is a nice way to shift our perspective from us, our thoughts, sorrows, ect to  a Godly and heavenly perspective. Additionally, sometimes in the search for gratitude one simply needs to remember to take care of themselves, eating right and sleeping. Listening to others encounters with Christ and stories of His goodness encourages gratitude within. Sometimes we need to take time out to tend to our weary souls.

What do you do when it feels nearly impossible to find something to be thankful for?

 

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“Know this: my God will also fill every need you have according to His glorious riches in Jesus the Anointed, our Liberating King.” Philippians 4:19

Jehovah Jireh (God My Provider),

From the moment, I open my eyes at the break of day till the time the sunsets You provide. Daily, You provide me with food, clean water, shelter, clean air, and clothing. You surround me with lovely people whom I cherish. People who challenge me to grow closer to You, people who make me think, and people who support me. A wonderful church family. You have given me purpose each day air kisses my lungs.

Daily, You provide me with just enough to thrive. Enough strength, determination, compassion, love, and grace. You have provided the beauty of nature.

You have provided me with a thriving relationship with You. Blessed me with the Scriptures and the gift of prayer. You have blessed me way beyond my comprehension. You have blessed me in ways that I am unaware of. You have blessed me so greatly, yet so often I do not acknowledge the depth of all my blessings. You are my great provider. I will forever praise Your Holy name.

Amen

Tapering Tips

There is plenty of information on Prednisone as well as the side effects. One can find a list of illnesses that it can help, which lets be honest the list is impressive. There are articles and vlogs on coping with being on the medication. Additionally, there is a facebook support group dedicated to the drug we love to hate.

On the other hand, information on tapering is scare. Coming off Prednsione is a difficult journey yet there is little information to make it less.

Coming off Prednisone has nearly shut down my body more than once after months of tapering pain. I am now in a situation where my doctor wants me off by July. For obvious reasons I am not a fan of tapering. I am determined to try to not feeling like I’m dying while tapering.

I have been trying tons of little things to make the process a little easier. I know many people struggle to get off this medication so I want to share what I’ve tired with you. Please note this is only my personal experience.

Vitamins

I have added a substantial amount of vitamins to aid my body as it adjust.  The vitamins I chose are based on my personal research,knowing my body/history, and considering all my illnesses. It is too soon for me to say how well most of these work. Potassium and magnesium are must add vitamins especially for muscle pain.

Though it is not the safest vitamin for me I finally decided to add turmeric for a few weeks due to it’s anti inflammatory agents. It thins ones blood which is my hesitation.  Boswellia. It helps with osteoarthritis, rheumatoid arthritis, asthma, inflammatory bowel disease, EDS, and helps pain. Methylsulfonnylmethane (MSM) is another vitamin I added. This should help with arthritis pain, osteoporosis, and muscle cramps. I struggle at times with eating and I am well aware that I don’t get all the vitamins I need through food. Because of this I added Super Fruit and Veggies tablet. I also switched my probiotic to 40 Billion CFU Guaranteed.  I have no idea if these will make it easier to taper. I am not sure if I will stay on all of the vitamins at this point.

Many in the Prednisone support group suggest looking into CBD oil to help whatever the Prednisone was treating. CBD oil is through to help inflammation, appetite, sleep, and mood. Additionally, some use Kratom to help with the pain.

“Native to the Southeast Asia, kratom (Mitragyna Speciosa) is a powerful medicinal plant used by thousands throughout the world. The medicinal potentials of this plant are vast, some of the most prominent include: pain relief, opiate addiction treatment, mood lifting, energy and immune system stimulation.

There are entire forums on the use and benefits of this impressive plant, which speaks for this plant’s virtue more than we ever could.”

During The Day:

Gentle stenches and work outs are ideal with frequent breaks. Staying hydrated is vital while tapering.I have POTS and therefore, it is difficult to remain hydrated. I recommended checking out electrolyte tablets or powered.  Personally, I like the brands Drip Drop and The Banana Bag.

Of course, eating as healthy as possible is an assets. I have struggled with eating the whole time I was on Prednisone so this has been a struggle. I have slowly been adding in fruits as I tolerate it. Small meals are ideal.

While tapering I need to take more frequent breaks and pace myself. It is important to monitor heart rate, blood pressure, or blood sugar if needed while tapering.  I monitor my heart rate and blood pressure.I find that I get stressed out coming down. Therefore, it is vital for me to take time out for myself to de stress. Making a de stressing tool box can be helpful.

Sleep is vital to tapering. I don’t know about anyone else but I feel so drained while tapering. I have nearly no energy all day. Currently I am getting about 10 hours of sleep. Some people take naps. Either way sleep is vital.

Bath:

I recently got a magnesium spray but it is too soon to say if it is working. I have found baths to be extremely helpful with my tapering pain. I add a bath boom, Epson salt, and aches and pains bah soak. Don’t underestimate a  bath till you’ve tired it. I am going to be learning how to create bath bombs. If I discover a great recipe I will share it with you all. I always use Aches and Pain Relief by Village Naturals Therapy.

There are many topical over the counter options for many people tapering. Sadly, I am not one of them as most of these products have been irritating my mast cell. Some products to look into include icy hot, trigger balm (which was my favorite), Bio Freeze, or Bengay. In addition to creams, there are patches and sleeves too.

Slow and Steady

When tapering there is no such thing as too slow. The slower the better. Going slow allows glands to kick back on that have been asleep due to the medication. I fought for one mg tablets and finally got some. For the remainder of my taper I am decreasing by 1/2 mg. My taper schduel has been rewritten at least a dozen times at this point. So most likely, it’ll change again. However, at the moment I am planning to go down 1/2 mg every four days.

Another tip I have heard in passing is to alternate doses. I haven’t found this to be helpful but it is worth trying. Example 10, 7.5,10, 7.5, 10, 7.5, 7.5.

You need to find what works for you and stick to it. I am trying to convince myself to go as slow as I need to even if that means not getting off till August. I am not trying to be disobedient to the doctor but I need to do what’s best for my body at this point.

 

 

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.