Monday, June 16, 2014

The Importance of June’s Chronic Illness Awareness Months to Me!



“We can’t help everyone, but we can help somebody.”
– Pres. Ronald Reagan

“Recognizing and preventing men’s health problems is not just a man’s issue. Because of its impact on wives, mothers, daughters, and sisters, men’s health is truly a family issue.” Congressman Bill Richardson

“If we sugarcoat, or worse yet, turn a blind eye to an issue like Alzheimer’s because it makes us uncomfortable, we will never understand its complexities.” - Scott Kirschenbaum, Filmmaker


“His headache was still sitting over his right eye as if it had been nailed there.” ― Ian Fleming

Organizations that support those who live with visible and invisible chronic illnesses choose a month of awareness for various autoimmune diseases and chronic illnesses. June is a special month to me because one of the Chronic Illnesses that the Chronic Illness Community brings awareness to in June affects a family member who I love very much. While, I am not ready to speak about the illness in public, I am able to speak about it and honor my family member as I let everyone who reads this blog know about the Chronic Illnesses that are brought to the forefront in the month of June each year. 

As you glance or visit the websites of the diseases and illnesses below, ASK YOURSELFWhich of these Chronic Illnesses are familiar to me and which look like a foreign language?

Please, do not feel bad if you do not recognize the invisible Chronic Illnesses listed below. I have learned a great deal while I have been promoting my Mrs. Mississippi International platform “Chronically Content: Coping with Chronic Illness-Release the Resentment, Choose Contentment.” I am not a medical encyclopedia, so I depend on trustworthy, reliable websites and other forms of Social Media, along with speaking with people who live with these diseases to learn just a tiny bit about what each Chronic Disease is truly all about. Because the general population and the medical community both need to learn about Invisible Chronic Illness, I am making it my quest, “Angie’s Quest,” to “Bring a Voice to the Silent Pain of Chronic Illness.” I can tell you that I know one or more people, including close family and friends who are now or have been affected by the Chronic Illnesses and Disease listed below. Can you say the same?


June Awareness Months that I consider Invisible Chronic Illnesses (although some illnesses are more well-known than others) include:




National Scleroderma Awareness Month
Visit the Scleroderma Foundation at
www.scleroderma.org

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease.




National Aphasia Awareness Month
Visit the National Aphasia Association at
www.aphasia.org

Aphasia is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence.  Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing.

Aphasia is a common complication with people who have experienced Traumatic Brain Disorders (sudden trauma that leads to brain damage). This form of Aphasia develops quickly due to head injury or stroke.

Other forms of Aphasia may develop progressively, or slowly, from brain tumors, brain infections, or dementia/Alzheimer’s. A person with Alzheimer's might have difficulty saying the correct names for people or objects that were previously familiar. Speech might be vague, and the person might use the words "it" or "whatchamacallit" because he or she can't come up with the correct word. The person might also have difficulty understanding what's being said, repeating back what's been heard, or understanding what is read. In the later stages of the disease, the person might repeat a word or sound over and over or echo things that have just been heard.



Myasthenia Gravis Awareness Month
Visit the Myasthenia Gravis Foundation of America, Inc. at
www.myasthenia.org

Myasthenia gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning "grave muscular weakness." Myasthenia gravis (MG) is an autoimmune disease that causes muscle weakness. MG) affects the neuromuscular junction, interrupting the communication between nerve and muscle, and thereby causing weakness. 

A person with MG may have difficulty moving their eyes, walking, speaking clearly, swallowing breathing, depending on the severity and distribution of weakness. Increased weakness with exertion, and improvement with rest, is a characteristic feature of MG. In MG, the immune system attacks a receptor on the surface of muscle cells. This prevents the muscle from receiving the nerve impulses that normally make it respond. About 30,000 people in the United States are affected by MG. 
It can occur at any age, but is most common in women who are in their late teens and early 20s, and men in their 60s and 70s.



Scoliosis Awareness Month
Visit the National Scoliosis Foundation at www.scoliosis.org
To learn more about Scoliosis visit http://www.healthline.com/symptom/scoliosis

Scoliosis is a spinal deformity that affects about 6 million people (2-3 % of the population of the word’s population). Scoliosis impacts infants, adolescents, and adults worldwide. The typical onset age of scoliosis is 10-15 years old. It occurs equally between the male and female population. However, females are 8 times more likely to need more treatment for their scoliosis. Scoliosis can impact a person’s quality of life causing limited ability to breath, limited physical activity, and a loss of self-esteem. Over 600,000 visits to a doctor’s office are made by scoliosis patients and tens of thousands need to wear a brace, while nearly 40,000 need to undergo spinal surgery. A Scoliosis patient’s life is worsened by the many health risks and unknowns of this disease and unsuccessful or costly treatment.


Migraine and Chronic Headache Awareness Month
Visit the National Headache Foundation at www.headaches.org/content/migraine-and-headache-awareness-month

Over 37 million people in the U.S. are diagnosed with migraine.  Although 47% of the adult population experience headache annually, these disorders are poorly recognized and inadequately treated.  This is why the National Headache Foundation is standing up to “show purple” during awareness month.  We challenge everyone else to stand up with us and let others know they are not alone.  Let us show that we are unified and strong as we move forward together.


National Cancer Survivor’s Day (first Sunday in June of each year)
Visit the National Cancer Survivors Day Foundation at  www.ncsdf.org

National Cancer Survivors Day is an annual, treasured Celebration of Life that is held in hundreds of communities nationwide and around the world. It is a day for everyone, whether you're a cancer survivor, a family member, friend, or medical professional. This day provides an opportunity for all people living with a history of cancer – including America’s nearly 14 million cancer survivors – to connect with each other, celebrate milestones, and recognize those who have supported them along the way.


Men’s Health Week (the week of June each year that ends with Father’s Day)
Visit the National Men’s Health Network at www.menshealthweek.org and www.menshealthmonth.org/week/index.html

The purpose of Men’s Health Week is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This week gives health care providers, public policy maker, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury.



Deaf-Blind Awareness Week (the last week of June of each year)
Visit the Helen Keller National Center at http://www.helenkeller.org/

This week focuses on increasing public awareness and understanding of deaf-blindness. According to the Helen Keller National Center (HKNC), about 70,000 people have hearing and vision loss. More than a decade ago, Deaf-Blind Awareness Week became an event officially recognized by the Federal government.


I am writing about June’s Health Awareness Months and Weeks of 2014, because my parents, grandparents, in-laws, siblings, and close friends have lived or live with one of the illnesses listed above. If you live with any of these illnesses yourself, are a caretaker, a loved one of someone with these illnesses that organizations and people, like me, volunteer to do all that they can to bring awareness to--PLEASE SPEAK OUT! 

Support the organization's cause; but, make sure it is a reputable organization. Talk to the medical community. Tell those fortunate enough to live in complete wellness exactly what it is like to live with a Chronic Illness that leaves you to wake up each morning and try to go to sleep each night with Chronic Pain. Whether your illness occurs occasionally or you live with it daily as I do with my degenerative arthritis, ankylosing spondylitis, and cervical spinal stenosis, TALK, TALK, TALK. 

It doesn't matter if people or if our doctors look at us like we are crazy. The only way to teach others about your individual Chronic Illness/Autoimmune Disease is to Vocalize Your Own World of Silent Pain and Chronic Illness.

--Chronically Content
--Philippians 4:11-12

Angie Russell Irvin
Mrs. Mississippi International 2014
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Saturday, June 14, 2014

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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