Suffering in Silence: Life with Autoimmune Disease

For those unfamiliar with autoimmune disease either personally or by association, the best description I can give is your immune system, which keeps you healthy, begins attacking healthy cells – your body essentially attacks itself. There are a multitude of autoimmune diseases: Rheumatoid Arthritis, Lupus, Celiac’s Disease, Scleroderma, Psoriasis, Sjogren’s syndrome, Ploymyalgia rheumatica, Pernicious Anemia, Multiple Sclerosis, Type 1 Diabetes, Chrohn’s Disease, Vascultitis, etc.

According to the American Autoimmune Related Disease Association (AARDA,) over 50 million Americans are affected by autoimmune diseases with over 80 types of known autoimmune diseases. Autoimmune disease can run in families and 75% of those suffering from an autoimmune disease are women. African-American, Hispanic, and Native Americans have an increased risk of developing an autoimmune disease.

As with many diseases, autoimmune disease can have stages from systemic to remission. As a point of clarification, I’m not officially diagnosed with an autoimmune disease. My entire life I have lived with a loved one who has multiple autoimmune diseases. I also have friends with autoimmune diseases, especially conditions that became prevalent after college.

My blog post isn’t just an autoimmune disease awareness post, but an exploration into living with those silently suffering with these diseases.

 

auto immune disease
What Can Aggravate an Autoimmune Disease?

 

  • The Dignity of the Human Person: “A person is an entity of a sort to which the only proper and adequate way to relate is love.”- St. John Paul II, Love and Responsibility. Tragically, our culture maintains a mostly utilitarian and social Darwinist approach to the dignity of the human person- if you can’t quantify the worth by the socially accepted rubric it ain’t there. I’ve witnessed the very real, painful struggle of a loved one clinging to their intrinsic worth and dignity while the world feeds them lies about how they are a burden on their family, loved ones, community, and society. A person is person regardless of form or function. Even the sickest or most deformed and seemingly inconvenient person is a child of God and reflects some aspect of the divine. Love bears all things and believes all things. Love rejoices in the truth.
  • People vs. Things: As the graphic above depicts, everyday life can be life threatening to a person with an autoimmune disease, especially a person facing a systemic autoimmune disease. Don’t even get me started about the inundation of artificial fragrances and bath/beauty/home products in North America creating a toxic environment. People don’t want to live in bubbles, but when the outside world is toxic, your options can be limited. Our home may be hypoallergenic and fragrance free, but we chose that long before it became a life-threatening need. Sometimes the process is arduous, expensive, and inconvenient or seemingly hopeless. But by choosing the person over a lifestyle and the things that make a lifestyle, we gain more than we “loose” in inconvenience, appearances, and expense. Our lifestyle may not be “sexy” or “glamorous” but it’s worthwhile and authentic.
  • A Person Isn’t a Tool: “You must remember to love people and use things, rather than to love things and use people.”- Venerable Fulton J. Sheen. A person isn’t a utility knife once rusty or broken you either repair or discard. Sometimes you can’t “repair” or “fix” a person, but you can suffer with a person (i.e., compassion.) Life with autoimmune disease or living with a person with an autoimmune disease isn’t easy and can be hard- the best type of hard. The lifestyle requires and demands mental/emotional/spiritual energy, staunch courage, creativity, perseverance in adversity, and loads of divine grace. Having a decent sense of humor and a level of abandonment in Christ helps too. But I found many people who struggle and suffer with an autoimmune disease have an immense capacity for joy and hope.
  • Learning About Yourself/Learning to Adapt: I went to dinner with my friend who is a Licensed Massage therapist and works with patients who have autoimmune diseases. She listened to my story (my family’s story and the difficulties we were facing.) She paused and stated, “You want to be frustrated with a person with an autoimmune disease when you can’t plan anything or commit to anything with certainty, but you can’t be. It isn’t their fault because no-one can predict how and why and what may happen hour by hour. And they are the one’s who suffer with this daily. How frustrating it must be for them.” She captured a rare truth. Living with a person suffering with an autoimmune disease is an exploration into one’s self (a mirror of sorts): your motivation, your priorities, your definition of commitment and relationships, your worldview, your sense of humor, your selfishness and selflessness, your compassion and empathy or the lack-there-of, your faith and the importance faith in your daily life, your humility, your pursuit of virtue versus vice, and whether you have the courage to live in the world but not conform to the world.

Thank you for reading and your support!

 

St. Lidwina, patron saint of chronic pain and chronic illness,  pray for us!

 

 

 

Catholic 365 Article: NaProTECHNOLOGY for the Unmarried Woman

A couple months ago, I submitted an article to Catholic 365 which was published. This article is a follow-up to an article I wrote a couple years ago. The article is a personal witness and testimony to health and healing beyond hope.

http://www.catholic365.com/article/6864/naprotechnology-for-the-unmarried-woman.html

Stroked

I am a Pediatric Stroke Survivor. Today marks the 13th Anniversary of my left pontine ischemic stroke (I.e., brain stem stroke) which resulted in right side paralysis. Science and medicine can’t explain why it happened nor my 99% recovery, but the Grace of God and His mysterious plan for my life explains the rest.

Survivor

Life has thrown me curveballs that irreversibly changed the course of my life. Having a stroke at 15 years old during my first two weeks of high school certainly caused the ebb and flow of my life to alter.

Some of My Stroked Lessons:

1. Life is beautiful in all its forms and functions.

2. A person’s utility doesn’t make them lovable or not. A person is lovable because they are human.

3. When you loose control of your utilitarian purpose in life and become completely dependent on the goodwill and charity of others, develop a deep sense of purpose not based on external factors.

4. Develop a good, clean sense of humor. Learn to laugh at yourself and life situations. Not only is humor therapeutic but an invaluable coping mechanism.

5. You can either fight your mortality or not. Either way you’re still mortal.

6. Medicine = people helping people to help people. Not perfect people perfecting people to perfect people.

7. Be kind to yourself and others. Suffering a traumatic brain injury will close doors but even if a window doesn’t open look for a transom window. A little light is better than no light.

An Anniversary Prayer:

Dear Heavenly Father, thank you for the gift of life and the gift of healing. Grant increased healing of body, mind, and soul to those that suffer. Grant them peace. Grant their caregivers’ wisdom, quiet strenght, and compassion. Allow them to experience a transcendent hope. Help me to always be grateful, to cultivate joy, to suffer with purpose, to persevere through adversity, to know my limits, and rely more fully on your love and grace. May my life reflect your light to others.

Amen.

When You’re Tired of Fighting . . .

snowflakes
Photo Credit: Isaiah Eyre Photography

“. . . Chained by your control. There is freedom in surrender. Lay it down, and let it go.” This is a poignant line in Casting Crown’s song “Be Held.” A song with a message that came into my life two years ago.

A recent conversation with one of my best friends prompted this post. Both she and I are facing potentially radical life changes or challenges. The common thread was the idea of being held. Both she and I have been instructed by priests to be held and stop grasping at and controlling life. My priest, a Jesuit on a retreat during the sacrament of confession, further warned me of the dangers of this illusion of control. Sure we make free will choices about what we think, say, or do, but the real ticket items of life are out of our control.

You can be the healthiest and most active person but still experience a health crisis. You can be the most competent driver and still end up in a car accident. You can pray and do all the right things at the right time and still have a crisis of faith. Praying that perfect novena might not get you the spouse you want or deserve in a timely fashion. Grace downpours upon us, but grace doesn’t equal control. Only God has authentic control, I.e.., He is the alpha and omega. Moreover, God isn’t about control. God is about a divine, merciful, and loving plan for us and our world working with our free will choices.

My Jesuit retreat master warned me of the dangers of control. He explained I was chained by could haves, should haves, and would haves. I was playing God. Not only were my two hands chained behind my back, my freedom was becoming more limited and constricted. I was chained by my control, and in the process I had lost an innate and inalienable aspect of my humanity- freedom.

His solution: BE HELD. For any reader who may be scoffing, “dude, that is easy,” either you have achieved a level of sanctity many of us are working on or this concept really hasn’t sunk in or been practiced. Allowing Christ to hold you in complete and utter abandonment like an infant in a parent’s arms is no small feat especially as a modern adult. To back away and tell God, “I can’t handle it. You handle it.” Or “I rely more on you than myself or anyone or anything else.”

Be Held . . . A lifetime of practicing this reality awaits. I look to my neice and nephews as examples running into my arms with arms stretched wide, face joyful, and eyes scrunched closed. Once in my arms, the dead of weigh of their love and trust almost cripple me. I hope and pray that one day I will approach Jesus in this manner.

Too Mas

# St Francis #lightFr. Robert Spitzer wrote a book entitled “The Five Pillars of the Spiritual Life.” Contained within the chapter exploring prayer, my former university president suggests certain forms of spontaneous prayer. Every moment of every day is an opportunity for prayer. Particular prayers that ring true recently include “Help me, God!” Or “help!” Or “you take care of it!” God understands and hears our pleas. Intent is more eloquent than words.

Sometimes life feels heavy, very heavy. (Que me humming Heavy.) Sometimes there is no answer but Trust in God. Sometimes there aren’t feelings of consolation. Sometimes life just stinks. Life can feel physically, mentally, emotionally, and spiritually draining. Life can feel like all is too much.

In these moments, like today or the past couple of months, my only advice to myself and others is be honest with God about how you feel and where you’re at. He already knows, but I’m sure He appreciates the honesty. A priest friend posed the question recently of choosing between confessing the sin of anger or another emotion towards God or the sin of being dishonest about how we felt. Oh snap. God deserves respect and Holy fear, but God also deserves honesty and love.

When you feel burdened and crumbling under the weight of life’s challenges, God wants to know how you really feel. And he wants to extend a loving,  reassuring hand to support and guide you or I. When you can’t handle life anymore, God can.

Jesus, I trust in you.  Amen.

Dear Creighton NFP (1 Year Later),

Approximately one year ago I wrote an open letter about Creighton NFP outlining my hope, fears, and frustrations. One Year later, I figured I should follow-up.

Dear Creighton Model:

Not only did you totally kick me in the keister, you pushed me to the boundaries of sheer sanity. NFP continues to affirm and heighten my belief that there IS A GOD, and I’m not God.

Wholly smokes! When my system is working in harmony, it’s like the restored, gleaming Sistine Chapel. When my reproductive tract falls into discord, it’s like the Sistine Chapel with loin clothes added and years of grime and gunk covering the paintings. Being a woman is always beautiful, but sometimes that vision is easier to recognize some days rather than others.

Recently that vision has been nigh impossible to decipher. I’ve left a trail of tears and pleas in your wake. I cry out to God all the day long and all the night too begging for His infinite mercy and guidance. Though I resolutely practice and follow your guidelines, I struggle daily. Apparently, there is pain, and then there is PAIN. Who knew hormones were so amazingly powerful and important to the simplest and most complex bodily functions. Who knew you could have low grade infections not for months but for years. Thanks to NFP I learned I have a new breaking point. I learned control is much more elusive concept than before. I’m more broken than even I realized.

Sometimes I’m angry with God and disagree with His plan. As I told a priest friend in confession: “God is asking too much.” Daily I make a commitment to offering my pain, suffering, and frustration for the conversion of sinners and the salvation of souls. If you have to suffer, one might as well suffer well. But suffering well doesn’t make the actual suffering easier just more meaningful.

For those who are quaking in their boots by the above description, every uncertain and frustrating day is worthwhile rather than denying who God created me as a woman. Rejecting and denying having a reproductive tract that can malfunction and become ill like any other system of your body may seem like a good idea, but isn’t. Creighton NFP isn’t limiting but freeing. My heart breaks over the though of countless women and medical professionals denying their bodies and providing only a band-aid solution for serious issues. Only when you’re illuminated through the eyes of God can you see yourself for the breathtaking creation you are.

The most important lesson learned thus far is to see myself as God sees me. Beautiful. Whole. Enough. Fearfully and Wonderfully Made. Made in His Image.

With All My Respect and Admiration,

Hannah

P.S. Please, find and fix something soon. I pray for strength and courage.

Medical Zebras

Today I read an article on BBC News about a young woman who competes in Beauty Pageants with a rare genetic connective tissue condition known as Ehlers-Danlos syndrome (EDS). An article highlighting a beauty queen with a 25 inch scar down her fused spine was worth a read. This young woman, Victoria Graham, started a charitable organization called “The Medical Zebra Network.” Why?

She explains the network’s name: “In medical school, doctors are trained to think of the common thing when diagnosing through the phrase, ‘When you hear hoofbeats, think of horses not zebras.'”So if a kid has runny nose or a cough they most likely have a cold rather than a rare form of cancer. But those rare things do happen and are often called ‘medical zebras’.

“So we say, ‘Think zebras, because zebras do exist’.”- BBC NEWS

I looked up the authenticity of the history lesson. BBC and she are correct. This was a medical school metaphor. The picture under this portion of the article shows her flexing her bicep with a hefty pick line inserted into her arm. I smiled. For those who don’t know what a pick line is think an IV but an internal IV threaded into your artery, usually with the entry point in your bicep area. This allows direct intravenous access to your artery.

Victoria transferred colleges hoping to find a program that exercised better flexibility and understanding around her medical treatment. She discussed the sad reality of loosing friends “Maybe my illness is something they can’t deal with or put up with,” she says. “I don’t know what the reason is,” or “She also describes having relationships with boyfriends suffer.” God bless she and her family as they navigate the ups and downs of their unique condition.

My best friends and I joke about how doctors should always start with the most bizarre and unlikely diagnosis and work their way down. We aren’t a medical horse diagnosis kind of family but a medical zebra kind of family. Medical Zebras tend to be great people but intimidating too. These people deal daily, hour by hour, with the reality most people avoid daily, hour by hour . . . mortality and suffering.

Like Victoria I have lost friends or acquaintances that couldn’t “deal with” or “put up” with my conditions or treatments. When you’re dealing with intense physical suffering, the emotional and mental slap of having “friends” bail adds that much more to everything. It hurts like heck, but I learned it’s less about myself and more about them. In the end, the situation becomes an opportunity for practicing intense forgiveness and healthy boundaries.

Like Victoria and others with unique medical challenges, my intimate relationships with boyfriends and male interests have “suffered.” There are NO words to describe the experience of having a practicing Catholic Christian man essentially abusing you because of their personal extreme selfishness and issues while blaming your health situation. May God have mercy on their souls. I now look at these moments as divine mercy, but at the time and even now the pain still twinges. I pray that these “practicing Catholic Christian men” who attend conferences and rallies but cringe at the site of suffering will eventually learn to love their families and children as Christ loved the Church by laying down his life. I hope they don’t abandon ship when times get tough, but instead when times get tough the tough get going.

In the meantime between doctors appointments and treatments, medical zebras oddly have a better grasp on joy than most “healthy” people. Yes, most extraordinary circumstances whether health related or not thins out the herd of friends and loved ones. The Trinity, Mother Mary, and the heavenly host never leaves your side but draw even closer in your most trying moments. Yes, people do need to understand how sick or ill a person can be without the symptoms or visuals being obvious.

For example, a former close friend now acquaintance of mine heard through a mutual friend I was on crutches. A debate ensued if my injury was legitimate. A few days later I showed up to a choir concert on crutches and wearing tennis shoes with my dress. My former friend goes, “You really are injured. So and So said you were but I didn’t believe him.” I responded, “Do I need to show up in a body cast for you to believe me?”

Enough said for now . . .

 

Alms . . . What? Almsgiving.

This Lent I decided to move my serious almsgiving deliberation into deliberate action. Though I still have student loans incurred at a Catholic Institution and an active member in my parish, I’m not a child anymore. My faith needed to grow in a practical manner.

According to the USCCB (United States Catholic Conference of Catholic Bishops),

The foundational call of Christians to charity is a frequent theme of the Gospels.  During Lent, we are asked to focus more intently on “almsgiving,” which means donating money or goods to the poor and performing other acts of charity.  As one of the three pillars of Lenten practice, almsgiving is “a witness to fraternal charity” and  “a work of justice pleasing to God.” (Catechism of the Catholic Church, no. 2462).

This may be an unpopular statement for my non- Catholic Christian brethren, i.e. sola fide. Are we saved by good works? Yes and No. Do we earn our salvation? No. But our good works flow from our relationship with Christ- our inner disposition makes us act out based upon our faith. Christ performed acts of charity and good works while on earth. And thus, we as Christians are called to perform good works and acts of charity too. Our faith is alive in our works, actions, thoughts, and deeds. Our faith needs to be salt and light to the world or it’s dead.

Want to learn more about faith and works? Click here. 

During Lent, three pillars support Lenten practice: prayer, fasting, and almsgiving. This year I made a deliberate attempt to practice almsgiving. I’m unable to contribute in grand ways, but that isn’t the point. In Mark 12:44, the widow gave all she had. She has a whole bible heading named after her: “The Widow’s Offering.” During the time of Jesus, widows were considered the poorest of the poor including other woman and children. Society did not look after widows. It is no coincidence that Jesus used the widow’s offering as an example of almsgiving.

This Lent I decided to curb superfluous online shopping and practice almsgiving instead. The practice of almsgiving is designed to help me became a more generous person, a more grateful person, and a more Christ-like person.

Please, Holy Spirit, help me to be a more generous person.

Amen.

U.S. Catholic Christian Voting & Faithful Citizenship

photo credit: WikipediaElection Day on November 8th is fast approaching. Presidential and Vice Presidential debates ensue. People take stances or the lack therefore. Families argue. Friends argue. Catholics argue. Not to be too blunt, but evil feeds off of discord. If you’ve ever read C.S. Lewis’ Screwtape Letters, you know that the little forces or the little devil’s minions seek to create discord, disunity, confusion, and hopelessness. Politics and Presidential elections tend to evoke similar qualities.

There is nothing simplistic about faithful citizenship or conscientious voting. The crux of the matter is a “developed conscience.” This developed conscience allows us to make difficult decisions and weigh matters through the guidance of the Holy Spirit. As Catholic Christians, we are blessed with less ambiguity when it comes to voting and faithful citizenship. Our Catholic faith provides clarity and sense of direction. There is a hierarchy of evils. Some evils will fatally flaw society more than others. Some policies will strike at the heart of the culture and create discord, confusion, hopelessness, and fraction. Our voting responsibilities reflect that.

Here is the link to the United States Catholic Conference of Bishops’ teaching document entitled “Forming Consciences for Faithful Citizenship.”  As disclaimed in the intro, this document is to be read in its entirety not selective to support ideology or agenda. I find the document comforting and hopeful. There is a rhyme and reason to faithful citizenship though the lens of our Catholic faith. My voting season became less confusing.

And, yes, many Catholic Christians will argue that defending “right to life from conception to natural death” is not the MOST important voting issue. Without life, there is nothing else. No other important issues or topics. No fundamental grounding principle to enact better systems, policies, and services. Everything becomes relative. We can try but will always be crippled by the fundamental flaw.

Here is one of my more graphic examples. As Catholics, we believe in the Trinity: God the Father, God the Son, and God the Holy Spirit. We believe that the Trinity is the eternal exchange of love between three persons, one God. We believe that the Holy Spirit proceeds from the love of the Father and Son. We believe the Holy Spirit lives, moves and animates are daily lives and the world around us. We believe that the sexual act is a reflection of Trinitarian love. A child conceived proceeds from love regardless of whether or not the sexual act was loving or not. Directly aborting a child is comparable to killing the Holy Spirit in the Trinity (imagine me slamming my first down on the table for emphasis.) That is fundamentally flawed.

The above document does not tell us exactly how to vote (the whole idea of free will), but guides a Catholic Christian in the formation of their conscience. May the Holy Spirit bless, protect, and guide us in faithful citizenship. Amen.

Concussion

-Thou Shall Have No Other Gods Beside Me-

This post was inspired by my recent mild traumatic brain injury called a concussion and the many weeks of physical and mental rest. One of my treatments is no or minimal “screen time.” (computers, tv, phones, etc.)

A highly controversial film starring Will Smith as Dr. Bennet Omalu, this Ridley Scott film written by investigative journalist Peter Landesman Concussion (2015) highlights the true story of one man’s discovery that rocked and exposed the NFL’s policy, treatment, and recognition of traumatic brain injuries. A highly trained black, African doctor (and Catholic,) Dr. Omalu performed an autopsy of the former Pittsburgh Steeler icon and star Mike Webster after a his tragic demise and death.This led to a series of tests, research, and linked CTE or “Chronic Traumatic Encephalopathy” with Football which basically means after repetitious traumatic brain injuries like a concussion the brain proteins and tissues become damage and your brain strangles itself from the inside out leading to severe mental and emotional health imbalances. The NFL condemned the research and even sicked the FBI on Allegheny General for his research and the professional that assisted him in publication. After ten more tragic and violent deaths of retired pro football athletes, the NFL acknowledged Dr. Omalu’s research. This CTE phenomena and dementia extends to all contact sports where your brain is bashed repetitively: football, soccer, rugby, boxing, basketball, etc.

Here is an interesting line from the movie about human physical anatomy:

“The woodpecker’s tongue extends through the back of the mouth out of the nostril, encircling the entire cranium. It is the anatomical equivalent of a safety belt for its brain. Human beings? Not a single piece of our anatomy protects us from those types of collisions. A human being will get concussed at sixty G’s. A common head-to-head contact on a football field? One hundred G’s.”

Dr. Omalu, being from Nigeria, did not accept the status qou in the USA that violent, contact sports have no potential repercussions. Sports, especially pro sports, enjoy a cult following. I lived in the Northeast, Midwest, and Southeast. I know. I watch sports. I enjoy some sports. I played sports. What I found most disturbing form the movie, is how it highlight that sports is a “god” or “God.”

There is nothing intrinsically wrong about enjoying physical activity and movement in a competitive, team environment. But at what cost to our physical, mental, and spiritual selves? This movie is good for a ponder.

“The NFL owns a day of the week. The same day the Church used to own. Now it’s theirs.”