Beautiful Beyond the Pain-Honoring Alex's Memory

"Her strong faith and support of family and friends gave her the strength to fight with great courage until the end. "

"I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want."  - Philippians 4: 11-12

Before I traveled to Birmingham, Alabama, to judge the 2014 Miss Plus Alabama Pageant in April 2014, I received a private message on my Mrs. Mississippi International 2014 Facebook page from a dear woman, Sherri, who I now consider my friend. Sherri wears many hats in the Miss Plus America Pageant System in Alabama and Georgia, and now on the National level. She messaged me to let me know how excited she was that we were going to have the chance to meet when I judged in Alabama because we had a true connection before we ever met in person: Chronic Illness and Chronic Pain.

Sherri wrote:  "As I read your info and saw the platform "Angie's Quest," I was thrilled. My best friend's daughter is dying of the complications of severe Crohn's Disease. She is only 20. Anyway, they have set up a foundation in her honor, supporting and bringing awareness to those with "Silent and Invisible Illnesses." Alex looks gorgeous on the outside but only has 4 feet of intestines left and there is nothing else they can do. She is currently at the Hospice Hospital. I just wanted to make a connection and personally invite you to join our Facebook group, Beautiful Beyond the Pain. I think that it would be an awesome fit for both of you and maybe we can learn and support each other in the journey that God has blessed us with. I can't wait to meet you."

Beautiful Alexandria

 Alexandria (Alex) the daughter of Sherri’s best friend had suffered from her Chronic Illness most of her life. Alex had been in hospitals over 2000 times and had countless operations in her 20 short years of living. She was 11 years old when she started to experience “stomach issues,” and by the time she entered High School and made the Cheerleading Squad, she could not even cheer at one game. Alex had developed Crohn’s Disease, a disease like my Chronic/Degenerative Arthritis that is often associated with older people. At 17, Alex even had a DNR (Do Not Resuscitate) written and signed by herself, her parents, and her lawyer. She lived in extreme pain every day of her life and was wise beyond her years. Alex had committed herself to God and was ready to be healed and whole in God’s time, when HE was ready to take her from this earth.

Alex made it out of the Hospice Hospital while I was judging and Sherri was working for the Miss Plus Alabama America Pageant. Although she lived in excruciating pain, she continued to fight for those living with Invisible Chronic Illness. Her mother, Lorri, was even able to compete in a pageant that April 2014. Alex carried on with her work on her Facebook page and Foundation- both titled “Beautiful Beyond the Pain.” She was determined to help others like herself- like me- to gain our permanent, recognized standing among the medical community and the world, at large.

Not long after, the foreboding pain of Alex’s illness overtook her again. Part of living with her debilitating Crohn’s Disease meant that most often Alex had difficulty breathing. Rather than bring hospice into her home, Alex asked her parents to take her to the hospital. Although she questioned her own request, Alex was not sure that God was calling her home just yet. Once in the hospital, Alex’s body quickly deteriorated, and specialists of all kinds determined to place her on a respirator, even though Alex had a legal DNR. The doctor’s told her parents that her breathing troubles this time were most likely caused from pneumonia-thus, the respirator. Once on the respirator, the DNR was no longer effective. For several weeks, Alex’s parents, family members, and friends fought the medical system to allow the DNR to go into effect; they prayed, cried, and loved Alex. And even though, Alex regained consciousness for a short time, her fragile body could no longer fight the physical distress that she was in; Alex left the hospital only to have to go to a hospice facility. Alex passed away on May 14, 2014 at Peachtree Christian Hospice facility in Duluth, GA.

Alex and her mother Lorri-silly through the pain

 I was honored to be invited to Alex’s memorial service held on June 1, 2014. Because the trip to her hometown was far from my home, and because I was having a difficult time dealing with declining health problems of one of my family members, I was unable to go to Alex’s Memorial. I pray for Alex’s parents and for her close friends as often as God reminds me of Alex. Her mother Lorri misses her baby girl; yet, Lorri is strong, and she is now the Chief Operating Officer at “Beautiful Beyond the Pain.”

As you read my story about Alex, perhaps, you can understand why those like me, who live with Silent, Invisible Chronic Pain and Chronic Illness[es] every day of our lives fight so hard to help doctors, those who have their health, and the general population to understand what it is truly like to live with pain every waking moment of your life.

For Alex and for the Chronic Illness Community still standing strong even in their pain, I will speak to anyone who will listen to me about the importance of “Bringing a Voice to the Silent World of Chronic Illness.” I will help others learn to “Cope with Chronic Pain” in whatever way they need me to help them. I will strive to live “Chronically Content” and stand in the gap for those whose bodies are too weak to stand for themselves. I have been where they have been. 

I thank God [not often enough] for bringing much welcomed wellness to my body. I can exercise now. I can drive. I can swim. I am not dependent on my husband or my daughters to be my caretakers. I can compete in the 2014 Mrs. International Pageant. Wow, that is so humbling and awe-inspiring to me at this stage in my Chronic Illness journey. I am stronger than I have been in many years. Yet, never doubt that I have days when my pain is tremendously debilitating. I am learning to fight through my pain and continue my tasks-whatever they may be.

Believe me when I say that I do not take my physical fortitude or my emotional and mental resolve for granted. As long as there is breath is my body, it is “Angie’s Quest,” just like it was Alex’s to love, to care for, and to be an encouraging beacon, a symbol of hope for those living with Invisible and Visible Chronic Illnesses.

—Chronically Content

—Philippians 4:11-12

Angie Russell Irvin

Mrs. Mississippi International 2014

For more information on Crohn's Disease see the Mayo Clinic's website link below:

http://www.mayoclinic.org/diseases-conditions/crohns-disease/basics/symptoms/con-20032061

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