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!

 

 

 

International Travel & Packing with Chronic Health Conditions

“Leaving on a Jet plane! . . .” Cue the excitement and the thrill of international travel. Regardless, of the reasons behind travel, whether domestic or international, the drive comes from an innate, human curiosity and capacity for learning and experiencing the “other. ”

What does travel look like for a person with chronic health conditions? Depends on the condition and circumstances. Certain conditions may even limit a person’s ability to travel. But I know my packing list and priorities differ from your typical travel blog.

travel

Points to Ponder:

1. Understand the region of the world you are interested in travelling to. Be realistic about your condition(s) and understand the potential risks of visiting an area where you will not have access to certain types or quality of medical care. God be with those that don’t have access to good medical care.

2.  Check with your health insurance company to see if your policy follows you to your travel destination. My past two policies did, but only certain facilities in the UK were covered. If not, weigh your need for a temporary, international health insurance policy.

3. For ease of mind, research how to access healthcare services in your destination country(ies). Most of the world operates on a different healthcare system then the US. The local Embassy website will outline how US Citizens can access different healthcare services within that specific country.

READY TO PACK?

1. Medications The General Rule of Thumb: Carry on your prescription medicine in the original package(s) with a Letter from your prescribing doctor outlining the medical necessity of your medications. Research medication travel guidelines by country you plan to visit. Most Embassy websites within your travel country will have info regarding travelling with prescription medication. If you have less than 3 months of medications, you typically don’t have to disclose to Customs  (varies by country). If you have over 3 months of medications, medications administered by injection or liquids, or medications that are “controlled substances,” assume you will need to disclose to Customs.

2. A Doctor’s Letter. Make sure to request a Letter outlining the medical necessity of your prescription medicine needs, list of prescription meds, and contact info for your prescribing physician at least a 1- 2 weeks before travel. Most doctors are responsive to patient requests, but your doctor could be out of the office. This way you aren’t stressed and scrambling at last moment. Having this letter will help with any Customs inquiries or if you needed any medical attention while travelling.

3. Daily Dosage. Depending on the quantity and shape of your medications, bring a pill case or Ziploc bags filled with your non-prescription medications. Once through Customs, you can easily transfer your daily dosage from the prescription packaging to a convenient and portable on-the-go system. For example, I take more non-prescription and prescription meds daily than can fit in any pill case. I use sandwich size Ziploc bags. Once through Customs, I add my prescription meds to my supplements and grab one bag per day. Do not discard the original medication packaging.

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4. Pack Extra. Pack more prescription medications than days you are actually traveling.  Don’t save space by packing fewer meds. Take another 1-2 weeks of meds for “just in case.”

5. Prone to Nausea. If you’re susceptible to stomach sickness, skip the airline barf bags and pack a couple quart to gallon Ziploc bags. Discreet and practical, these plastic bags allow for better control and ease of disposal. I have complicated migraines and sometimes struggle with nausea.

6. Research Handicap accessibility and guidelines at your intended travel destination. Check with your modes of transportation and lodging about handicap accessibility and accommodations. I do not need special accommodations for accessibility, but please, research for your particular needs.

Most importantly, HAVE FUN and ENJOY the experience of international travel! May God be with you on your next adventure.

St. Christopher, 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.

Part 1: Pride Goes Before Disaster

“Pride goes before disaster, and a haughty spirit before a fall. It is better to be humble with the poor than to share plunder with the proud.” ~ Proverbs 16: 18-19

Other than the theme of love the theme of pride dominates the majority of literature- Hubris. I learned acutely this week: Pride has no business in an intimate relationship.

St. Augustine wrote, “It was pride that changes angels into devils; it is humility that makes men as angels.” So very true. Pride enslaved us to sin and death. Humility freed us from sin and death.

S. Augustine- pride

Within a loving, intimate relationship pride ruins relationships and wrecks havoc. Pride destroys all other virtues and even other vices. Pride denies sin. Pride ultimately means an over-inflated, misplaced self reliance and rejection of our reliance on Our heavenly Father- Our Creator. Pride is like giving God the middle finger. We puff up like a petty, pouffy self-absorbed grouse. But pride makes us feel good or justified or superior. In reality, we reject God, turn ourselves into mini-gods, and reject the people we claim to love. We’re too busy loving ourselves.

Pride manifests itself in many ways within a relationship: lack of communication, resentment, abuse and control, sexual perversion like pornography or masturbation, holding a grudge, inability to think of others, lying, omitting or twisting the truth, blaming others, whining, etc.

“For pride is spiritual cancer: it eats up the very possibility of live, or contentment, or even common sense.” — C.S. Lewis, Mere Christianity.

Pride isn’t the same concept as being proud. We can delight in our gifts, talents, and accomplishments barring maintaining healthy gratitude to Our Creator who bestowed us with the capacity. Pride doesn’t mean having unhealthy boundaries, being a doormat, excusing bad behavior, or refusing to cultivate a conscience that delineates between good and evil. Having convictions or a moral compass  is not automatically pride.

Pride prevents reconciliation, humility, forgiveness, freedom, and virtue. Pride tramples faith, hope, and charity (love.) Pride enslaves a person to their distortion of self reliance and prevents freedom in this life and the next. Pride snuffs out joy. Pride destroys peace. Pride prevents communion and union.

“The greatest misery does not stop Me from uniting Myself to a soul, but where there is pride, I am not there.” –St. Faustina, Divine Mercy in my Soul (1563)

I’m guilty of pride. Pride that hurts others and myself. Daily I struggle with occasions of sin and sin prompted by pride. I struggle to keep prideful behavior at bay within an intimate relationship. Pride can be sneaky too manifesting itself in unlikely manners and places.

What is the antidote to pride? Humility. Not faux humility. Authentic humility. Part 2 of this post will be an exploration of humility.

“Humility is not thinking less of yourself, but thinking of yourself less.” — C.S. Lewis

The Space Between

As a child, I couldn’t have imagined the complexities and complications of my twenty-seven years of earthly existence. I had a very active and developed imagination too! As the Jesuits would say, “Life is a Journey.” After eight plus years of Jesuit education, you master the reflective, meditative tone while reminescing on the journey of life and God’s will in one’s life. Many times on this journey, I feel that I slipped into the Space Between.

St. Augustine Quote

Not only the title of an iconic Dave Matthews Band song, but a literary explanation of the middle ground, the grey area, the limbo land, the space between, etc. Etc. When an unexpected turn in an important relationship transpired, I felt thrust back into that space in between. One moment the world finally made more sense. The darkness abated, and the light shone out a bit brighter. The fears and anxieties dimished while hope and joy grew. Someone finally chose me and accepted me as I was. Then life shifted course yet again.

Yes, I trust in God. But saying I trust in God and trusting God are two separate concepts. I’m practicing the latter.

When discerning my vocation, I always felt in “the space between.” As an elementary school child, the obvious vocational path to the outside world was religious life. I spent time at convents and with dynamic religious sisters. But I knew from an early age, no religious order would accept me with my chronic physical health conditions. I spent quality time around religious orders because I recognized the intrinsic beauty and importance of consecrated life regardless of whether that was a viable vocational option for myself.

In my adult life, when religious sisters recruit me for discerning consecrated life, I can smile and laugh with gratitude while thanking them for their kind invitation. Or I ponder quietly and wryly smile when they ask whether I’ve asked God for physical healing. Mhmm.

For similar reasons that would prevent my acceptance into consecrated life, these reasons follow me into dating relationships and the vocation of marriage. These reasons cast an additional layer of gravity on the vocation of marriage and prospect of biological children. At times, I feel at odds against the vocation of marriage too. To find a man, especially an orthodox practing Catholic man with depth of character and virtue, willing to embrace those odds and grow together in love beyond those odds provides a natural filtering method. I’m attempting to sound charitable.

Some may mention the generous single vocational option which I live now. The Spirit still seems to be moving me in a different direction. Jesus, I trust in you.

Today I feel like I’m floating yet again in that space between. The certainites and possibilites of yesterday don’t exist or not in the same manner today. The hope of tomorrow gleams. For now I’ll float on the ocean of God’s mercy. Hoping and trusting the boat will be guided to safe havens no longer adrift in the space between.

The Double Edged Sword of Looking Good

Appearences aren’t always indicative of reality. A conversation after Sunday Mass with my friend’s family reminded me of the deceptive nature of appearences. We can exude a reality that doesn’t exist. Easily.

I cringed when she said, “You look great!” People need to understand appearances can be deceiving. A smile can mask a multitude of ailments. Supernatural joy can hide deep rooted pain and distress. We are masters of distortion for a variety of reasons, usually either selfish or selfless reasons. All the world is our stage and we act out our illusion of control.

For a person with multiple chronic and complex health conditions, acting the part of a healthy character has become an artform, a tool of discretion, a mask of fleeting normalcy, and a shield from narrowmindeness and hurt. This act can come at a heavy price- the double edged sword.

A smile can hide a multitude of ailments. When the doctors banned me from replying I was “okay” to pertinent medical questions, I wasn’t being coy or manipulative. My internal joy of my miraculous pediatric stroke survival trumped any discomfort and uncertainty I faced. Therefore, I was okay in the grand scheme of God’s plan. Maybe I wasn’t medically okay, but I was providentially okay.

Occasionally my loved ones or I haven’t received the medical care we needed in as prompt of a manner because we’ve smiled or laughed in the ER or Urgent Care. I’ve had clinicians diagnose me as a healthy young women when I was only a few hours away from severe metabolic imbalance and potentially cardiac arrest. This is an extreme example that illustrates my point.

Appearances of a person’s physical, mental, and emotional state of being may not be as it seems. I may smile and engage while looking healthy and vivacious in-person. But I may go home and curl up in a fetal position in a cool dark room moments later dead to the outside world for the next week.

I take for granted the fact my parents and immediate family are intuitive and perceptive people. A subtle change of skin tone, subtle change in breathing patterns, a distortion of posture, or the sheen in ones eye can be enough to alert them of a medical concern. Learning the subtleties of the other produces a keen sense of awareness, a responsibility to others wellbeing, and an avenue to break from selfishness.

Strength and defiance of visible weakness can become an extension of pride, a mark of valor, and a mark of extrodinary courage on the battlefield of chronic illness. The real battle is not to loose our ability to feel and express emotions, allow others to serve us in our moments of weakness, and honestly share the reality of our precious lives.

I guess either I need to practice acting ill or others need to practice being perceptive. Or both.

Free Will: Freedom & Consequences

I wonder if how I feel presently about living with the free will choices of another mirrors in any minute capacity how God feels? Except God wouldn’t feel helpless or hopeless because He is the Alpha and Omega. The I AM. But I wonder if God feels a profound sadness and sorrow when He must live with and navigate our detrimental free will choices? If the Gospels indicate anything about God and God’ s love for us, my answer is “Yes.” The Diary of St. Faustina indicates the expansive mercy and pure love yet overwhelming sorrow the Divine Mercy feels towards us too.

A recent situation with a close, dear friend sparked a greater degree of introspection. Pain, heart break, confusion, and anxiety of the unknown and undecided future surfaced. Two people faced with choices. Two people moments before besotted now distant. All the tendencies towards kicking, screaming, pleading, and manipulating still don’t guarantee the desired outcome. Why? Because at the end of all my desire for control or influence, I’m incapable of making the choice for another.

In many ways, my sad scenario mimicks aspects of humanity’s relationship with God. Presented with better and healthier options or even just a different way of living topped with support and grace, we can still reject that reality and chose the opposite or a lesser variation. For all God’s grace and guidance, we can choose “no.” And God isn’t going to kick and scream or manipulate us back into place. That defies our human free will.

Love upholds freedom. If you truly love someone, you allow that person freedom. The free will to choose. This doesn’t include condoning or tolerating bad behavior. If I manipulate the free will choice of another especially for an intended result, I’m no better than enslaving them. Guidance and encouragement are different than manipulation. So I will love and let live. And pray. And hope. And attempt not worrying.

 

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.