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!

Bittersweet Birthday

I had overheard people saying that old age caused pain. So, by the time I had chronic pain, about nine years old I thought it was I just a part of the aging process. At the same time, I wondered how everyone else was coping so well with the pain and mine was taking over. I felt extremely guilty for missing an excessive amount of school. It took some time for me to understand that children should not be in intense pain or pain all the time. Those people were indeed referring to elderly people. Who knew?

From a fairly young age, I associated growing up with having more pain. I am thankful to be alive. Especially in light of a handful of times, it was questionable if I would make it. Even so, my birthday is a little difficult emotionally.

It’s not just the physical pain. I tend to feel more isolated around my birthday. This is the time I notice that indeed I am not a typical young adult. The time I need to grieve the things I can no longer do. Time to grieve all I am missing out on.

The social clock is ticking obnoxiously. I can just hear people saying, “She is nearly twenty-three years old. She should be out on her own, not living at home.” It is difficult for me to view my accomplishments. My brain finds it natural to highlight the struggles during certain seasons. Society, as we know, has too many unneeded options. I have learned to allow comments to roll off my back, but sometimes it has a way of getting under my skin.

Furthermore, I have found that the older I have become, my memory has faded. The brain fog is thick. I was devastated when this began to happen. Heartbroken as the memories of my furry friend slipped out of my grip.

It is okay to struggle with holidays or your birthday as someone with a chronic illness. It is okay to have fears. It is okay to not be okay. As long as you do not give up. Even when you don’t feel like it, hold onto hope. Crawl forward, even if you are slower than a snail, you are still making progress.

Even though it is emotional, there is a part of me that looks forward to my birthday. I am deeply blessed to have people in my life who support me and love me. I am thankful for days of simple joy and laughter. The Lord has allowed me to thrive in the midst of great adversity.

“For You shaped me, inside and out. You knitted me together in my mother’s womb long before I took my first breath. I will offer You my grateful heart, for I am Your unique creation, filled with wonder and awe.You have approached even the smallest details with excellence; Your works are wonderful, I carry this knowledge deep within my soul. You see all things; nothing about me was hidden from You. As I took shape in secret, carefully crafted in the heart of the earth before I was born from its womb.You see all things; You saw me growing, changing in my mother’s womb; Every detail of my life was already written in Your book;
You established the length of my life before I ever tasted the sweetness of it. Your thoughts and plans are treasures to me, O God! I cherish each and every one of them! How grand in scope! How many in number!” Psalm 139:13-17 The Voice Translation 

Hope

New Year’s sweet bells of hope ring loudly as January launches. Fervently we compose resolutions so that this year will be astonishing. However, the sweet song evaporates. Leaving us in silence by mid-January as we waltz back into the reliable beat of everyday life. Focus is no longer aimed at hope or the resolutions. Slither into daily calamities, apprehension leeches on, despair dangles overhead, and sorrow is deep.

Providing joy, strength, and adding depth to our relationship with Christ. Despite heartbreak, pain beyond comprehension, and when our world seems to be crumbling before our eyes there is always a spark of hope. It is not always instinct, but then again living the way Jesus called us to is anything but natural. As Christians, we are required to battle our flesh. In addition, we are to fight to remain firm in the hope Christ provides for us. It is a daily fight. Let me assure you, my precious friend that the reward is immeasurable.

How would you, dear friend define this simple word hope? Appearing frequently, it is engraved on our hearts. Yet we need a reminder of the biblical definition so that we resist conforming to the world’s definition of hope. Additionally, so that we remain steadfast in Christ and transformed by Him.Bible.org defines hope this way, “Hope” in Scripture means “a strong and confident expectation.” Furthermore, there is a clear element of trust throughout Scripture when hope is examined. Moreover, I find it essential to highlight the usage of hope in the New Testament, which I found on Biblestudytools.org. “The New Testament consistently uses the verb elpizo [ejlpivzw] and the noun elpis [ejlpiv”] for hope.” Both words here are Greek.

 

Additionally, hope molds our character, providing joy, peace, confidence, endurance, strength, courage, and comfort. Expanding beyond our dreams when we are consistently feasting on the Word of God. Furthermore, our hope cultivates as we become consumed with the Holy Spirit.Perspectives are transformed by hope as it gives new light to an existing situation. Likewise, it modifies the way we view ourselves, transforms what we value, and affects how we spend the gifts God has graciously entrusted us with such as time and talents.

Practically, how do we remain anchored in hope when our circumstances are screaming give up? When we continue to receive one piece of bad new after another. As mentioned before, we must continuously feast on God’s word. In addition, it is vital to the health of our hope to spend time simply in  Christ presence. Additionally, prayer provides a path to the renewal of hope. Various books, sermons, and worship songs can be an asset. Lastly, we can remain anchored in hope by leaning on Christian friends.

Lord,

Rekindle our weary souls with fresh hope. Fill us with Your HolySpirit. Enable us to have a deeper understanding of Your hope and of who You are. Regardless of what we face enable us to remain steadfast in hope. We praise You for the hope of salvation found in Christ Jesus. Blessed be Your Holy Name.

Amen

 

 

Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses

 

When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses is a practical book for anyone who battles a chronic illness or chronic pain. Esther is an inspirational individual who has thrived in many aspects of life despite chronic illness, without a doubt she is a role model. Reaching out as a compassionate friend she gently teaches her readers about the grieving process and coping with chronic illness and chronic pain. She is transparent with her faith journey as well as her struggles and victories.

Grief is an overwhelming aspect of chronic illness that threatens to take over. It breaks a person down. Those facing chronic illness and chronic pain grieve the person he or she was before the pain, their past, broken relationships, shattered dreams, and the person they had hoped to become. Chronic illness alters every element of life. At times, with the pain and additional symptoms, those with chronic illness don’t want to deal with the emotions. However, emotions are healthy and a part of life.

Personally, the emotions tend to hit me like a ton of bricks in a delayed reaction. Grief with chronic illness was no different. I get consumed with daily life not processing what I am going through on an emotional level. Maybe you can relate. Once the emotions hit it is overwhelming. I officially got my diagnosis in my late adolescent years. I took a season to grieve all the things I missed out on like prom and mission trips I had planned out. That season I grieved the friends I lost.

I have worked through a lot of the grief but there is still some work to be done. Support is essential when working through it. This book provides a positive outlet for grief. One of my favorite things is that there are writing prompts to assist the reader in constructively working through emotions.

Amazon description: “Chronic pain, illness, and disability take so much away. Sometimes it seems as though they take everything we have ever loved and held dear.

Our physical abilities and our jobs. Our current passions and future dreams. Our finances and our friends. Our sense of community and our ability to engage the world in ways we could before.

Chronic pain takes away our sense of self and who we always thought ourselves to be. How in the world are we supposed to deal with this fact?”

Make sure to pre-order your book here! In addition, feel free to drop by Esther’s blog: Life in Slow Motion.

Ulcerative Colitis Update

This flare began about a week ago. My liver enzymes are high again, though not nearly as bad as in the past. The theory is that this is from my immune system attacking it. The major difference is that this time I am still on 15 mg of prednisone, which I also refer to as my safety net. The pain has been extremely intense this weekend. With these flares, it feels like being hit by a bus I know it sounds dramatic, but the intensity is hard to describe. The main issue is the abdominal area. Evey joint hurts, my ears ache,I have the chills and nausea. Of course, the fatigue is 50x’s worse than normal.

My Gastro retired last month and that was heartbreaking. She was the first gastro I had trusted and had compassion. I saw the new gastro on Friday and it was nerve-racking, to say the least. I am not a fan of seeing new doctors because my case is complex. I was relieved that this doctor had listened, was up to date on my medical mess, had some compassion, and was ready to start something new.

Most of you know that in addition to Lupus and POTS I have Ulcerative Colitis. Eating has been a struggle when the Prednisone is lower than 15 mg. Currently, I am on a combination of two anti-inflammatories, Prednisone, and Mercaptopurine (a chemo also known as 6mp). The goal for any chronic illness patient is to come off Prednisone. In my case dropping to 5 mg or coming off means going into the hospital. This is a common issue for people with a chronic illness. I know I am not alone in this struggle. #It’s A Spoonie Life! Thankfully, I have been blessed and have not suffered major side effects from Prednisone. 6MP is my second chemo. I am not a fan. I have had no improvement on it.

With all that being said I got the extremely exciting news that I do qualify for a biologic (which I knew). And of course, my new gastro feels it is time to begin the testing and paperwork. Testing include normal labs CBC, Comprehensive Metabolic Panel, and Hep Panels. In addition, TB testing is required. At the same time, insurance paperwork is started. I will be on Remicade. I will be writing a Remicade blog post soon!

 

A huge thank you to everyone who participated in invisible illness awareness week! I was honored to be involved, but I wish I could have done more.

This Is Chronic Illness

How the melody began of the symphony “the Spoonie Life” is unique to each of us. However, like a ton of bricks, the news crushed us emotionally, which no preparation could brace us for the sudden shift in song. Lumped into a group of over 125 million American’s who are in daily combat with their bodies due to chronic illness. After all, these are Invisible Illnesses.

Adjusting to the new role. A list of things we can no longer do. Harsh comments as well as the stairs, seem to greet us everywhere. Friendships fade away. Symptoms and pain consume each day. Functioning seems nearly impossible. Daily medications. Frequent breaks. This is chronic illness.

Well-meaning doctors increase anxiety levels. Medical testing is never ending.  No one seems to know what to do. At times our health is out of control and all we can do is ride the roller coaster and pray. Help seems just out of reach. This is chronic illness.

 

Yet we cling to hope because our lives depend on it. Dreaming. We find that reason to keep fighting. This is chronic illness.

This week is Invisible Illness Awareness Week. A week to honor you and to give you a voice. To equip you to fight your battle a little better. Making the invisible visible. Making those around us more aware. Hopefully, others will understand the reality of chronic illness.

My friend with an invisible illness, you are brave, diligent, and compassionate. You overcome  negativity.  You have battled your invisible illness gracefully. You are an inspiration. Don’t give up! You are beautiful. You have an amazing purpose and you are making a difference.