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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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!

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.

Pour Out Your Heart

It is never ending. The symptoms. The pain. The frustration, anxiety, and tears. The fatigue. The new diagnosis. Life dramatically changes when you learn you have a chronic illness. Things become devastating when you keep adding to that list.

It is bittersweet. One is thankful to know what is going on and that there is a logical explanation to the maddest within their body. Yet on the other hand, one may question, how can so many things be wrong with my body.

It becomes more challenging when no one offers a full treatment plan. A few medications may help, some, yet it is not nearly enough. The pain becomes so intense one questions if they are dying. More frustrating when someone cannot function and sees no way out. There is no independence. Living at your own risk.

Yes, positive thinking is an asset and it is fundamental. In contrast, shutting off all “negative” emotions will do no good. Sometimes we need to allow our selves to get frustrated, upset, admit it is too much, admit we are scared, anxious, or feeling hopeless in the moment.

For a very long time, I handled my chronic illnesses emotionally “too well” to some. I wasn’t scared or anxious or depressed. My doctor at the time felt I should be unstable and offered me anxiety or depression medications which I refused. I knew it was God’s grace which I would embrace until the season ended.

Now, three years later, I am more emotional and grieving my losses from chronic illness more. Not clinically depressed or anxious, just emotional more than I would like. It is a challenge for me, like many others, to allow myself to feel hopeless, anxious, or scared. I feel the need to be super woman. To handle everything perfectly according to an unrealistic worldly perspective. Feeling like I never measure up.

No where in the Bible does it say that a saved individual will handle every problem with no struggles or negative emotions and of course it doesn’t say we will handle it perfectly. Take a look at the Psalms to see how David shared his raw emotions with Christ. Christ meets us in the struggles. “For the Eternal will be a shelter for those who know misery,
 a refuge during troubling times. Those who know Your name will rely on You, for You, O Eternal One, have not abandoned those who search for You” Psalm 9:9-10. He holds us during the unbearable pain. He wants us to pour our hearts out to Him and to share the intense emotions. He encourages us to be transparent. He is okay with us saying that we feel it’s unfair, we are frustrated, angry, or scared.

Christ meets us where we are in the middle of the mess, the emotions, and pain. Psalms 34: 4- 5 says, “God met me more than halfway, he freed me from my anxious fears.  Look at him; give him your warmest smile. Never hide your feelings from him”(MSG). He holds us in His arms when life is too much to deal with. Endlessly He pours out grace in the tragedies. He wants us to trust Him in the difficulties. Gently, He will guide us and provide moment by moment.

Lord,

I lift Your name on high. Thank You for knowing me better than I know myself. For allowing me to be completely honest with You. You understand my sorrow, anxiety, and pain. You understand my thoughts and emotions better than I do. Help me to invite You into my pain and to pour my heart out to You without holding anything back. May I never hide anything from You. You are my refuge. I trust in You. Provide all I need. Help me to live life abundantly. Let each moment of my life bring honor, glory, and praise to Your name.

Amen

Grieving the Lasts and Embracing Illness Firsts

Karen Kingsbury’s tear jerking poem, Let Me Hold You a Little Longer describes a mother’s affection. The profound sadness laced with delight a mother endures as her precious baby grows up. A poem not only for Mama’s but for everyone. A reminder to us all to cherish simple daily moments to hold on to them a little longer, a little more dear to our hearts. As an individual with a chronic illness, I learn the lesson to embrace life’s precious moments sooner than my peers.

“Long ago you came to me,

a miracle of firsts:

First smiles and teeth and baby steps,

a sunbeam on the burst.

But one day you will move away

and leave to me your past,

And I will be left thinking of

a lifetime of your lasts . . .

The last time that I held a bottle

to your baby lips.

The last time that I lifted you

and held you on my hip.”

I cannot help but consider my Spoonie lasts overcome with anguish. I inquire if I understood those moments were my lasts if I would have done anything differently.

The last time I would breathe without excessive pain.

Fatigue wrapping me in chains.

The last time I walked without feeling dizzy.

The phone call or visit from that friend I cared for too much.

Heartbreak still in my clutch.

The last summer consumed with fun.

The last time the sun kissed my skin.

Life was just about to begin.

The last time I gazed in the mirror and saw me not the battle wounds of my illness.

Things on pause an awkward stillness.

Remembering each the lasts is more than heartbreaking. Though I would have preferred to know those were my lasts, I doubt much would have changed. Despite being so young I know in my heart  I appreciated those moments of laughter to their fullest. I loved those people who wandered out on me with all my heart and as deeply as I understood how.Entering the chronic illness world is challenging. Furthermore, those people are forced to conform to the restrictions. Adapting to the medical testing, questions, and daily activities.  Attempting to master the language. Recreating lifelong aspirations.

The first time a medical professional uttered the name of my illness

The first time I meet another who would support me

Laughing together, developing a friendship, providing encouragement as I wept a sea

The first time I did self-injections

Releasing perfection

Chronic illness is a complex journey. Oppression, delight, and countless lessons have a place.  One encounters grief, frustration, sorrow, and joy. Strength and courage are necessary daily. Those with chronic illness soon become legendary inspirations for the world. Each has their unique grief with their lasts. And unique illness firsts.

If you are newly diagnosed please know that you are not alone. While this is certainly a difficult road there is a lot of beauty and joy.  It is okay to grieve. But don’t forget to embrace the simple joys.